Social Inclusion through sports for children with intellectual disabilities

what impacts does society have on children with intellectual disabilities?

what are the effects of (children with intellectual disabilities) being socially included through sports?

what are some pros and cons of social inclusion for children with intellectual disabilities?

who are the main facilitators for this social inclusion for children with intellectual disabilities and what roles do they play?

how can society work to include more children with intellectual disabilities to activities or any other aspect of life?

connect all of these to the social capital theory !!!!

Promoting social inclusion through Unified Sports for youth with intellectual disabilities: a five-nation studyjir_1587 923..935

R. McConkey,1 S. Dowling,1 D. Hassan2 & S. Menke3

1 Institute of Nursing Research, University of Ulster, Newtownabbey, UK 2 Ulster Sports Academy, University of Ulster, Newtownabbey, UK 3 Special Olympics Europe/Eurasia, Brussels, Belgium

Abstract

Background Although the promotion of social inclusion through sports has received increased attention with other disadvantaged groups, this is not the case for children and adults with intellectual disability who experience marked social isolation. The study evaluated the outcomes from one sports programme with particular reference to the processes that were perceived to enhance social inclusion. Method The Youth Unified Sports programme of Special Olympics combines players with intellectual disabilities (called athletes) and those without intel- lectual disabilities (called partners) of similar skill level in the same sports teams for training and com- petition. Alongside the development of sporting skills, the programme offers athletes a platform to socialise with peers and to take part in the life of their community. Unified football and basketball teams from five countries – Germany, Hungary, Poland, Serbia and Ukraine – participated. Indi- vidual and group interviews were held with athletes, partners, coaches, parents and community leaders: totalling around 40 informants per country.

Results Qualitative data analysis identified four thematic processes that were perceived by infor- mants across all countries and the two sports to facilitate social inclusion of athletes. These were: (1) the personal development of athletes and partners; (2) the creation of inclusive and equal bonds; (3) the promotion of positive perceptions of athletes; and (4) building alliances within local communities. Conclusions Unified Sports does provide a vehicle for promoting the social inclusion of people with intellectual disabilities that is theoretically credible in terms of social capital scholarship and which contains lessons for advancing social inclusion in other contexts. Nonetheless, certain limitations are identified that require further consideration to enhance athletes’ social inclusion in the wider community.

Keywords intellectual disability, leisure, social inclusion, sports

Introduction

The vision of social inclusion for people with dis- abilities is contained in various Rights Statements such as Article 19 of the Convention on the Rights of Persons with Disabilities (United Nations 2007) and in the policy documents of many

Correspondence: Prof. Roy McConkey, Avenue Jean Burgers 4, 1180 Brussels, Belgium (e-mail: [email protected]).

Journal of Intellectual Disability Research doi: 10.1111/j.1365-2788.2012.01587.x

volume 57 part 10 pp 923–935 october 2013 923

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Governments including the UK (Department of Health 2009). However, the challenge remains of translating the rhetoric of rights into reality for persons with intellectual disability (ID) who remain among the most marginalised in many societies around the world (Emerson et al. 2008). The reasons for this are multifaceted. Many are born into poverty and this compounds the impact of dis- ability on their social exclusion within communities. Even in more affluent countries with their welfare benefits and support services, many people with IDs have low levels of social engagement and a dearth of friendships (Verdonschot et al. 2009). Also the stigma associated with their disability has often resulted in their active isolation from society (Akrami et al. 2006) as in their exclusion from formal systems such as education and employment. This in turn reduces their opportunities for com- munity interactions and friendships (Lippold & Burns 2009). Arguably, the provision of specialised services from early childhood onwards has further isolated people from their peers (McConkey 2011).

Although there has been increased emphasis in recent years on the inclusion of people with dis- abilities in formal systems such as education, to date the results in terms of social acceptance have been uneven (Ferguson 2008) with similar conclu- sions emerging from supported employment initia- tives ( Jahoda et al. 2008). In terms of leisure and recreation activities, the outcomes have been somewhat more hopeful especially for children (Siperstein et al. 2009), although significant barriers can be encountered for adult persons such as the segregated nature of their living arrangements, the economic status of participants, their level of adaptive functioning and the availability of trans- port along with a lack of other supports to facilitate engagement (McConkey et al. 2007; Abells et al. 2008).

Participation of people with ID in sports seems a fruitful arena in which to promote social inclusion and this has received increasing attention in main- stream sports studies for other disadvantaged popu- lations such as disaffected youth and immigrants (Coalter 2010). A limitation though is inequality of access to sport by people with disabilities (Liu 2009). For example, the European Commission’s White Paper on Sport (European Commission

2007) identified problems with access to sports pre- mises as spectators as well as to sport facilities and activities as players. One response has been the development of specialised sports organisations of which Special Olympics is the foremost example internationally for persons with IDs. In 2010, they claimed to reach 3.7 million athletes in over 170 countries (Special Olympics 2011). Moreover, past research has documented the benefits for participat- ing athletes primarily in terms of gains in physical and mental well-being, sport skills and in self- esteem (Dykens et al. 1998; Weiss et al. 2003; Siperstein et al. 2005).

Nevertheless, Special Olympics has been criti- cised by some for encouraging segregation from mainstream sports and perpetuating negative stereo- types of persons with IDs (Storey 2008). However, its Unified Sports® initiative may be conceived as an attempt to promote the social inclusion of young people with IDs with their peers in local communi- ties (Dowling et al. 2012). This programme com- bines players with IDs of higher sporting abilities (referred to as athletes) with non-disabled partners of average or lower ability level, in the same sports teams for training and competition. Thus, teams are formed by athletes and partners of similar level of sports skills, which generally means the more able athletes are taking their place alongside non- disabled partners whose sports skills are weaker than those of their peers. The teams train regularly and compete with other Unified Teams in local as well as national and international competitions. The programme’s intention is to enable athletes to develop their sporting skills while offering a plat- form to socialise with peers and the opportunity to develop new friendships, to experience inclusion and to take part in the life of their community. Unified Sports programmes are initiated through schools as well as through Special Olympics clubs and local mainstream sports clubs. In 2010, Unified Sports® was the fastest growing segment of the overall Special Olympics athlete population with nearly 0.5 million participants worldwide (Special Olympics 2011).

Unified Sports® mirrors similar sports initiatives with other marginalised groups underpinned by national and international policies that have lauded the contribution of sport to social cohesion and the generation of social capital (United Nations 2005).

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However, as Coalter (2010) observed there is ‘wide- spread lack of evidence for the effectiveness of some of the core claims’ (p. 1374). In addition, Hoye et al. (2009) noted that ‘social capital is not present or reflected in the membership per se but the ways in which the membership is used to secure benefit for the individual or group’ (p. 2). To date there has been limited research into the mechanisms by which sporting initiatives have increased or could increase the social inclusion of athletes. Such infor- mation would serve to increase the efficiency and effectiveness of initiatives such as Unified Sports to achieve their core aims as well as providing insights as to how greater inclusion may result for people with ID in other contexts such as education and employment.

Aims of the study

This research was commissioned by Special Olym- pics Europe/Eurasia under a competitive tendering process. However, the specific aims of this study were developed in consultation with an Advisory Group established for the project and in light of pilot studies undertaken. They were: • To describe the contributing factors that promote social inclusion within the context of Youth Unified Sports® as perceived by five main groups of stake- holders: namely athletes, partners, coaches, family carers and community representatives; • To determine the extent to which these factors are present across two different sports and five different countries; and • To identify the implications for the further devel- opment of Unified Sports®.

Research design

A qualitative approach was used in gathering infor- mation as this enabled informants to share their personal experiences and insights with respect to Unified Sports® and the impact it has on social inclusion. Each country was considered initially as a single entity with triangulation of responses possible across the different groups of informants. However, the findings could then be compared across the five countries to determine the extent of replication especially of the dominant themes identified in the data analyses.

The study population

Youth Unified Sports® is an evolving programme that now operates in 28 countries in Europe/ Eurasia. In 2009 an estimated 16 000 players aged 12–25 years were involved. It was agreed to focus resources for this study on a number of selected countries within the region where the programme was better established and to focus on its two main sports: seven-a-side association football and basketball.

The inclusion criteria for the selection of coun- tries were: 1 The national Youth Unified Sports® programme and its teams had been in existence for more than 1 year. 2 There were sufficient Youth Unified teams who meet regularly for training and competition to allow for sampling of teams within countries. 3 There was a geographical spread between Eastern, Western and Central Europe.

Initially, eight countries were considered to have met the criteria and five were approached, all of whom agreed to take part, namely Serbia, Poland, Ukraine, Germany and Hungary. Across these five countries over 200 teams were known to the national co-ordinators of Special Olympics involving over 1600 athletes, 1200 partners and 250 coaches. Overall, male athletes exceed female athletes (81% male) as do male partners (87% male), but the gender ratio is slightly less with coaches (75% male).

For purposes of this study, within each country local competitions were arranged for varying numbers of Youth Unified teams in two or more locations. In all 55 teams were represented across the five countries involving 156 athletes, 106 part- ners and 65 coaches. Information about all the players was provided by the team coaches using a standard pro forma.

The gender balance across the 55 teams was broadly similar to that of the wider population throughout Europe/Eurasia. However, for the chosen sample of teams, partners tended to be younger than the athletes: 44% compared to 21% were aged 12 to 15 years. Also athletes had been involved in Unified Teams for longer than partners. Over two-thirds of athletes had been involved for 3 or more years, whereas this was the case for only

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12% of partners. This suggests that the turnover of partners may be greater with most staying for 1 to 2 years. This could be a reflection of partners leaving school and going on to further education or taking up employment.

Another marked difference between the athletes and partners was in terms of the school they attended. All but one of the partners attended mainstream schools, whereas athletes mostly came from special schools (92% in all). Moreover, around one-third of the athletes lived in institutions/ boarding schools, whereas nearly all the partners lived with families.

An estimate was made by informants of the eco- nomic status of participants’ families. Over three- quarters of athletes (78%) were rated as coming from low socio-economic families, whereas this was the case for 11% of partners, 89% of whom were from middle-income families.

Sample

In line with the aims of the study, in each of the five countries individual interviews were conducted with five athletes, with five or six partners and five coaches as well as group interviews with on average four teams in each country. In addition, around five parents of athletes and partners were individually interviewed as were four or five community repre- sentatives such as head teachers of schools and local politicians. The latter two groups had been invited by the local organisers for Unified Sports to attend at our request. Each sample included people of varying ages and backgrounds. In addition, back- ground information was provided by the five National Co-ordinators for Special Olympics in the five participating countries.

Method

Information was gathered through face-to-face interviews based on a standard topic guide with suggested trigger questions developed from the aims of the study, past research and a pilot study undertaken with Youth Unified Sports® teams in England. The focus of the interview was on gaining an insight into the participants’ experience of Unified Sports, their perceptions of the extent of

social inclusion, the factors that assisted or hin- dered this and the improvements they would propose. Throughout a conversational style was encouraged and interviewers were responsive to the interests of participants and points raised by them.

In each country, two or more researchers from local universities were recruited with experience of sports or disability research and who were fluent in written and spoken English. They were responsible for translating all the written materials into local languages and for translating the interview data into English. Face-to-face training was provided in-country on qualitative interviewing by a member of core staff (S. D.). Video recordings of simulated interviews were used along with role plays for prac- tising techniques. At least one member of the core staff was present at all locations for data gathering.

The data gathering was fitted around a 1-day competition among the participating teams in the chosen locality. This provided an opportunity for researchers to observe the sports in action as well as giving the teams a valid reason for attending and providing an enjoyable experience. Prior to the competition event, information sheets and consent forms were circulated by local Special Olympics staff to all potential participants. These described the study, outlined what was required from partici- pants who agreed to take part, emphasised that the anonymity of participants would be ensured and non-participation in the study would not affect their membership of Unified Teams. Signed consent forms were completed by all participants, and for those under 16, their parents consented to their participation.

Interviews were conducted as people became available while waiting for their next game. Team interviews were generally undertaken first followed by individual interviews with athletes and partners who either volunteered or who were invited to be interviewed. Interviews with coaches generally came towards the end of the day, but those with parents and community representatives took place through- out and according to their availability. The inter- views were conducted in a separate room or in a quiet area inside or outside the stadium. They usually lasted around 15 min.

All the interviews were audio-recorded using digital recorders. These were then translated orally into English by local researchers and these audio-

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recordings were sent to the core staff member (S. D.) who transcribed them verbatim. Names and identifying details were removed from the data so as to protect the anonymity of participants with codes used to identify the country and informant. In the quotes below, the country is identified first (G – Germany, H – Hungary, P – Poland, S – Serbia, UK – Ukraine), followed by the informant grouping (A – Athlete, C – Coach, CR – Commu- nity Representative, P – Partner, Par – Parent, T – Team) and then the allocated number within that grouping.

Data analysis

The approach used to analyse the data was informed by interpretative phenomenological analysis (Smith et al. 2009). Initially, the data were analysed for each of the five countries. Interview transcripts for all informants were read and reread to enable a deep familiarity with the text. It was then coded according to the main themes and sub- themes which were evident in the data. A second round of coding was then undertaken to compare the themes across the five countries and to check for variations by sport and informants. The identi- fied common themes were then revised and grouped. It was evident then that data saturation had been reached in that no new themes emerged from the later stages of data gathering. Selected transcripts were read and coded by more than one member of the core team to facilitate checking of themes. A similar process was used to identify

themes across the countries. Also as a further vali- dation check, a summary of the main findings was sent to our University partners as well as to an invited group of National Co-ordinators for Unified Sports® from countries who did and did not take part in the project.

Findings

All the informants confirmed that Unified Sports had resulted in greater social inclusion of the ath- letes, foremost through their regular engagement with the coaches and partners for training and com- petitions but also in terms of shared activities away from the sports field. However, our main emphasis was on their perceptions as to how this had come about.

Figure 1 summarises the four main themes and subthemes to emerge from the data relating to the perceived success of Unified Sports in promoting the social inclusion of the athletes. Although there were some variations across different groups of informants and across countries, the similarities in responses were much more striking. These four themes are described separately in the interests of clarity but each are related to the others.

Personal development of the athletes and partners

The personal development of both sets of partici- pants was seen in terms of sporting skills, interper- sonal skills and opportunities offered to them

Personal Development of Athletes and Partners

•Sports skills •Personal skills

•Access to places

Inclusive and Equal Bonds

•Focus on teamwork •Role of coach •Friendships

Social Inclusion through

Unified Sports

Positive Perceptions of Athletes

•Attitude change •Special Olympics events

•Media publicity

•Families •Schools

•Community and sports Organisations

Building Alliances

Figure 1 The main themes and subthemes perceived to promote social inclusion with Unified Sports.

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through Unified Sports, all of which contributed to participating fully in the teams. Both the athletes and the partners variously report improvements in their skills on the sports field, in relation to improved stamina and technical skills which were endorsed by coaches and parents.

We used to have to take it easy in training with the athletes as they got tired very quickly, now they want to go on and on, even after we partners have had enough. (UK-P02)

I think I play football much better than before, my technique is much better, like ball control – passing and shooting and being in contact with other players on the field. (S-A05)

Having improved abilities in sport led to an increase in their status among peers at school and in their communities.

. . . the athletes who are involved become more popular after taking part in Unified Sports, they are like celebrities in school when they come back with medals from a competition, and that they hang around with kids from the mainstream school gives them higher status here in the special school. (S-CR01)

All informants commented on the improved interpersonal skills of the players. These include a growth in self-belief and self-esteem and the devel- opment of confidence as well as improved commu- nication skills.

I am a more confident person now. I am not shy to talk to people. I will hold my head up and speak out loud. I got more used to people in playing on my team and I am not afraid of people that I don’t know. (H-A01)

One house-parent from an institution where some of the athletes lived also remarked on how their self-esteem has grown:

The boys I know, I can see the difference when they are at home, they are calmer, they do not have to prove themselves in arguing or something like that, they are able to be more sure of them- selves. (H-CR02)

Developments in communication skills were not restricted to athletes; partners also described new learning:

At first (when he first joined the team) it was a bit difficult because I didn’t know all these people and I couldn’t communicate with them in the same way that I did with my friends, but in just a few days this problem disappeared and it was very easy to communicate with these people. (UK-P01)

A third subtheme with respect to personal devel- opment was the broadening of opportunities that Unified Sports athletes had of experiencing com- munity life through their involvement in activities which took them out of special facilities and into typical meeting places in their communities and beyond. Through these opportunities there is also an increased visibility of people with disabilities in the community.

My son went to Romania and to Portugal, we had to look Portugal up on the map! He learnt a lot of things and he told us about what he had seen there, this experience changed him, he saw something of the world, he came back with his head high, his mother and I were proud of him too. (S-P01)

We have a good relationship with the head teacher here in this school (mainstream) and we are able to train here and hold some competitions here too. The kids at this school see our athletes here and they get used to seeing them. (P-C01)

Some participants also talked about the places they go socially with one another after training and matches. Although this was not the experience of all athletes, some did experience hanging out in places typically frequented by teenagers.

We go to the town square and talk, or to the games arcade, or we go for a drink in a café, the guys from the team know places to go and we go after training if we all have time. (S-A02)

In sum, Unified Sports provided opportunities for the young people to develop the skills needed to become more socially included first within the teams but then within other social contexts. As one mother commented:

Through Unified Sports my son has learnt that he is a worthwhile person and that he can meet with the kids without disabilities and have fun with them. He listens to what they say, that he is

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equal and important on the team and he comes home very happy. Unified Sports has taught my son that he can be included and he doesn’t have to hide anymore. (S-Par02)

Inclusive and equal bonds

A second domain related to the bonds developed between athletes and partners in the teams that were rooted in respect and equality. The focus on teamwork was central to this with coaches having a particularly crucial role. The growth of friendships among the players was also noteworthy.

We are all needed on the team, there are no star players, we are a great team and the team is the star. (H-A02)

There are no differences here between athletes and partners, we are all the same, the coach treats us the same and we treat each other the same. (G-P01)

I treat everybody equally right from the start, it is important for players and athletes to see that they are the same in the team. I am also careful to talk to them in a pleasant way, and to joke with them, I do not give athletes special treatment and I do not give partners special treatment and they all see this and it affects how they treat each other, they too are willing to behave as an group of equals. In a Unified team we are all the same. (UK-C03)

Young people reported how the approach that coaches take to training impacted on their experi- ence of Unified Sports. Some compared this to past experiences they had had in mainstream sports clubs:

The training we have here is much better and much nicer than I had before in my table tennis (mainstream) club. I enjoy it much more here. If you cannot do something then you are advised by the coaches calmly of it, how you can do work to make – for instance if you are a goalkeeper you are advised of how you can guard your goal better. (S-P01)

Parents also report in the inclusive culture of Unified Sports and often attribute this to leaders and coaches; one parent stated:

I want to talk about the healthy attitude of part- ners, because their attitude is very good, there is no negative attitude to children with disabilities, they do not go ahead with the ball, they give ath- letes every opportunity to show their skills so that everyone is involved in the game. This is how the coaches teach them and this is really working well. (UK-Par01)

Coaches mentioned the selection of partners and the need to work with partners as much as athletes to create a Unified Team.

I do not select kids just for their sporting ability, I want to know what they are like on the inside, that they are open and kind. (S-C03)

Now they (the partners) are calm, helpful and patient, at the beginning they didn’t co-operate much with athletes, now it has changed. (P-C01)

The growth of friendships among the players was commonly reported and some coaches deliberately encouraged this.

Friendship is the most important thing about being a member of a unified team. We are all friends both on and off the field. We also have a good connection with our coaches who I think I can say are our friends. (S-P02)

We all like sport and we ask each other have you seen the game last night, and do you know the latest results and things like that. Sometimes there is a girl that one of us likes and we talk to each other about the best way that one of us can ask her out, we share some of that type of infor- mation, personal information with each other. It wasn’t like that from the beginning, but it is now because we have been playing together for more than a year and we have become good friends. (S-A01)

We in the club push people together to do differ- ent activities, not just sports activities, we want them to hang around together after school, go to dances, go to discos, go to towns, and we also organise for nature walks, and we invite everyone to participate in this. So we have lots of different non-sports activities that connect people and this helps them to spend more time together. (S-C05)

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For some teams, the relationships between the players were less equal as evident in the language used by partners to describe the athletes and how they viewed their role as one of assisting people who were less able. In these teams, the extent of mutual engagement off the playing field was also not so apparent. This might derive from the atti- tudes of certain coaches.

I have always felt sorry for these people, and I always thought it was a good idea to help them and for them to meet with each other. (UK-P01)

They [the athletes] have the chance to improve their social interactions, to learn how to behave with other people who are not disabled; they can watch partners and in this way improve them- selves. (UK-P03)

I see them talking together at training and so on, and it is clear that they are friends, but as for meeting up outside, I don’t think they are ready for this yet. (P-C02)

However, other practical reasons were given for lack of contact outside the sports.

I hang around after training only with those who live close to me, because lots of us live on a dif- ferent side of the city and it is not so easy for us to hang out after training – we have to catch a bus or train to get home and that is what makes it difficult. (S-A03)

Unfortunately, as I have to help my father quite a lot at the house because we have to live off the farm work that he and the other members of my family do, after training I have to go straight home because I have to help. (S-A02)

In sum then, Unified Sports offered the opportu- nity for inclusive and equal bonds to be forged among the two sets of participants that extended into friendships beyond the playing field. When these bonds were absent, there was less evidence of mutual participation in community settings.

Positive perceptions of people with intellectual disabilities

The third major contribution that Unified Teams was perceived to make to the promotion of social

inclusion was by challenging the prevailing negative attitudes towards ID that was commonly reported by all the informants but notably parents and partners.

. . . people must stop being ashamed of these kids, people in our society still have strange reac- tions to disabled people, sometimes they are ashamed, sometimes they are scared. But we have to talk with these people more, we have to inform them, disability has been taboo for many years, it is changing right now, but it is not enough, people need to have free access to information on this subject. (P-Par05)

I am ashamed to say that I used to laugh at these people (people with intellectual disabilities), now I will tell anybody to stop laughing if I see it and I will stand up for people if I can. It is wrong to laugh at these people, but I didn’t know much before I just did what everyone else did. (H-P04)

The idea was expressed by various informants that Unified Sports created a kind of ripple effect that reached more people.

The great merit of Unified Sports is that they increase the number of people who understand the needs of people with disabilities, so yesterday for example there were 10 people, today there is 100 people and tomorrow there will be 1000 of us and then there will be the whole country who understands the needs of people with disabilities and then the society will be able to organise normal conditions for them. (UK-Par01)

Partners spoke of how their attitudes have changed.

I think the biggest change in my inner world is the change of my attitude to people with intellec- tual disability because working and training with these people I try to compare people with dis- abilities and healthy people and I can say that athletes may be sometimes even more sincere and open and kind than healthy people you meet everyday. (U-P04)

Some parents talked about how the partner’s change in attitudes and how this had influenced his/her wider family and friends:

He has taught us all really. He tells us, his family and also his friends at school about what he is

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learning about people with intellectual disabili- ties, about being good at football, about being good friends, and so we have all leant so much. Some of his friends have joined the team and I have become a volunteer when I can at events they have. His getting involved changed some- thing for us all. (S-Par02)

The data also asserted the importance of the Unified Sports programme in raising awareness of the athlete’s talents. This was achieved through media coverage of Unified competitions and cel- ebration of achievements of the Unified team. One young person recognised the direct impact of this on his life:

Lots of people say they saw me on TV because of winning the competition, and these are nice people taking to me about being a good footballer. This is because I am the goalie on the Unified team and I am really a good goalie. (S-A01)

Participants strongly endorsed Unified Sports role in advocacy for people with IDs in their com- munities. One parent stated:

This project is a good way of informing people and we should have more of them and we should inform society about the existence of such a project and the existence of people with disabili- ties via television, radio programmes and so on. (UK-P01)

This was supported by a coach who said:

To get more people involved we have to tell people about what we do here, it is our obligation to do this. (H-C02)

National and international competitions provide opportunities for doing this.

Athletes are really proud when they come back home with medals; we try to show them to society either in the press or the local TV. Some years ago at the beginning of the movement it was hard but now the media are more interested in what we do and achieve. (P-C03)

The outcomes can be personal as this athlete described:

When I walk around town lots of different people say hello to me, people that I did not know

before but now I do because I met them through this team or have played against them in some other competitions. (S-A03)

In summary, by challenging many of the stereo- types associated with disability, Unified Sports builds new perceptions of people labelled as intel- lectually disabled but does this through personal contacts at the team level which then ripple through into the wider community. It may be a slow process, but it is one that is the basis for greater acceptance of people with IDs into local communities.

Building alliances

Finally, the data from coaches, parents and commu- nity informants identified the importance of build- ing alliances as a prelude to greater social inclusion of the players. Primarily, this was with mainstream schools as they were the source of recruitment of partners and coaches.

For the third year our Unified Sports programme has a collaboration agreement with a mainstream school. Not only do we recruit many of our part- ners from this school they also let us use their 25 seat bus and their playing fields. (H-C02)

Alliances with players’ families were also important in assisting the athletes and partners to attend training and covering some of the expenses involved in their participation. In some cases sib- lings came as partners and for parents too, their involvement went deeper as alliances were forged among themselves.

We are a group of parents and now a group of friends. Some of our children are partners and some are athletes but we do not make a differ- ence in that just like we tell our children there is no difference. We try to help each other; we give each other’s children a lift or help at an event. Unified Sports is a big part of our lives too. (S-P01)

We have set up a union of parents and children in Special Olympics and it is very important because we as parents can understand each other. We can fight for what is right for our children and we can support each other in our decisions. (UK-P03)

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The teams had also forged links with various community and sporting organisations in their local communities. They offered ‘in-kind’ support to the programme in terms of access to facilities and sup- plying equipment, but also provided opportunities for publicising Unified Sports. In some instances local funding was also available through these community alliances.

As both a member of the local community and someone who is able to finance different pro- grammes, organisation, institutions, I am able to give finances to different projects with people with intellectual disabilities. We give support to programmes to this Unified project. I hope the money they receive is even bigger next year because lots of people can benefit from the sports activities in this school. (S-CR01)

For a small number of athletes interviewed, taking part in the Unified programme had directly led to them securing employment with mainstream businesses. These were achieved through introduc- tions made on behalf of athletes by coaches and through employers seeing young people play and then deciding to offer them an opportunity in employment. Athletes reported that they were supported in their employment by the mentoring of coaches from their Unified team.

I work in a restaurant in the village, this is a full time job, it is what I wanted to achieve, so I work outside the institution. This was with the help of my coach that I got this job. I tried hard to get a job and in the end I got a permanent job. (G-P02)

Finally, as Unified Sports is part of the wider Special Olympics movement, this gave access to national and international Sports Federations as well as Government Ministries, but this aspect was mentioned by National Co-ordinators rather than local informants.

Discussion

The study has a number of limitations. The infor- mants were drawn solely from participants who were actively involved with Unified Sports and did not include those who may have dropped out. It is

possible too that the teams chosen and the inclu- sion criteria used for their selection biased the sample towards the best examples, rather than typical examples, of the impact of Unified Sports. However, the aim was not so much to assess the overall impact of the programme but rather to gain an insight into the processes inherent in Unified Sports that were perceived to further the social inclusion of the athletes within teams and commu- nities. Identifying the pertinent processes is a step towards increasing the efficiency of the Unified Sports programme in achieving its objectives and for guiding inclusion initiatives in other contexts such as employment and education. In this respect the study has a number of unique strengths: it included participants from five different countries and cultures; it covered two different sports and triangulated the opinions across five different groups of informants.

The four themes identified endorse the concepts inherent in theories of social capital and in particu- lar that of ‘bonding’: that is building networks based on strong social ties between similar people which maintains a strong group loyalty and rein- forces specific identities (Coalter 2010). Such bonding is especially crucial for athletes with IDs whose poorer sporting competence and social skills, coupled with the negative stereotypes associated with the disability label or their attendance at special schooling, often lead to their exclusion from sports. Significantly, Unified Sports provides a shared experience for both sets of players to develop their sporting skills along with offering both parties access to valued opportunities, such as travel to competitions. This mutuality of benefit or reci- procity is often absent in other attempts to promote inclusion for people with ID based as they often are around the altruism of the more able person as helper or supporter to the disadvantaged group. Rather as Coleman (1988) argued, the continuing investment by others in bonded relationships requires that they too receive a dividend.

A related issue in this respect is the deliberate selection of persons to be partners, in this instance non-disabled youth with an enthusiasm for sport but lacking the skills to advance in more competi- tive mainstream sports. This not only reduced the discrepancies in terms of sporting competences but also could be seen to introduce elements of peer

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R. McConkey et al. • Promoting social inclusion

tutoring that have been shown to be efficacious in other sport-based intervention programmes, par- ticularly the perceived similarities between the tutor and the learner (Payne et al. 2003).

Allied to these bonding processes but possibly growing out of them, is a challenge that Unified Sports makes to the negative perceptions that sur- round ID in many countries ( World Health Organi- sation 2007). As other studies have identified, personal contact is a major factor in attitudinal shifts across many cultures as non-disabled people discover that the stigmatised group is more like themselves than they are different (Yazbeck et al. 2004). In addition, the emphasis on developing athletes’ talents in social as well as sporting skills and celebrating their achievements through media publicity further distances them from the usual ste- reotypes of disabled persons that were reportedly present in all the participating countries and which are often reinforced in newspapers through the negative images and words used when reporting on people with disabilities (Brittain 2004). Locally sourced, good news stories generated through Unified Sports are possibly more likely to reshape a community’s perceptions of disability than national campaigns. Also the gains in terms of young peo- ple’s personal development could enable them to participate more fully in further education and employment: an aspect that future research could explore (Beyer & Robinson 2009).

The role of the coaches in facilitating team bonding is especially noteworthy. Their role is much broader than that of imparting sport skills (Hassan et al. 2012). Unified Sports coaches have responsi- bilities for recruitment, for furthering the personal and social development of both sets of players, for forging teamwork among them, for managing prac- tical arrangements and facilitating social contacts outside the playing field. As others have noted, the social and personal development activities which accompany the sport are probably more important in realising the wider goals than are the sporting activities per se (Orsmond et al. 2004; Spaaij 2009). Parallels can be drawn with the contribution of teachers to the success of pupils with special needs within mainstream schools (Avramidis & Norwich 2002), but comparable facilitators of inclusion are absent in other aspects of life such as employment where the so-called ‘job-coach’ often has

responsibility solely for the person with disability ( Jahoda et al. 2008).

Woolcock & Narayan (2000) identify a further form of social capital: namely ‘linking’ social capital that connects bonded groups to people and resources in the wider community thereby offering access to larger social networks and the levering of additional resources. There was only limited evi- dence of such linking occurring within this study and that was mostly with local schools, families and community associations. Indeed, a surprising omis- sion in the data obtained from informants was their lack of linkages with mainstream sporting organisa- tions, as at a local level, it would be conceivable that some of the teams or players might progress into mainstream competitions. As social capital theorists have noted, overly strong bonds can have negative consequences that may discourage contacts with the wider communities and limit opportunities (Forrest & Kearns 1999) or even act as a form of social control and regulation (Spaaij 2009). ‘Linking’ social capital can help to balance the more negative bonding effects. Future research using survey-based methods could usefully explore this issue further, especially with respect to the social contacts athletes have within the wider community beyond the sports field.

It is likely too that being linked into the infra- structure of the Special Olympics organisation nationally and internationally was another source of social capital for Unified Sports to draw upon. At a practical level, this provided opportunities for local competitions based on shared rules and gave access to funds for equipment as well as providing an infrastructure for recruiting coaches and athletes (Dowling et al. 2012). Nationally, Special Olympics assisted with governmental and media contacts in a way that locally created sports groups could not draw upon (Seippel 2006) and the international competitions were possible through the regional and world games organised by Special Olympics biannu- ally. The linking social capital emanating from Unified Sports and Special Olympics, however, should be mutually beneficial, in that the success of United Sports will further stimulate change in the host organisation (Hughes & McDonald 2008).

In sum, Unified Sports does provide a vehicle for promoting the social inclusion of people with IDs that is theoretically credible and with empirical

933 Journal of Intellectual Disability Research volume 57 part 10 october 2013

R. McConkey et al. • Promoting social inclusion

evidence in support of it. Nonetheless, there are four possible limitations that require further consid- eration. First, the recruitment of coaches with appropriate skills and attitudes is central to this endeavour allied with the extent of training, super- vision and support they receive (Spaaij 2009). There is an urgent need for more empirical research relating to the role of personnel as promot- ers of social inclusion (McConkey & Collins 2010).

Second, the main beneficiaries thus far of Youth Unified Sports are more able athletes whose sport- ing skills are more on par with those of the partners in the chosen sports. However, those with greater needs arising from their disabilities are arguably at a higher risk of social exclusion and hence might benefit even more from participating in Unified Sports. It is not immediately clear how this might come about as the careful matching of the athletes with partners is key to the programme’s success. One approach may be to focus on the engagement of partners with athletes who have higher needs in the context of different and less demanding sports that feature in traditional Special Olympics and to focus more on non-competitive activities (Harada & Siperstein 2009).

Third, as in mainstream sporting activities, atten- tion should be given to the development of strategies to encourage more female players to participate. In part this is affected by the choice of sports, in that in the countries where basketball was played by Unified teams, a higher ratio of female players was found. Hence, a wider range of sports is one strategy to encourage the greater participation of women (DePauw & Gavron 2005), although further research could usefully elucidate the factors for the differen- tial recruitment by gender into sports activities.

Fourth, participation in sporting organisations no matter how excellent cannot eliminate the social inequalities experienced by young people with IDs in terms of family circumstances, financial pres- sures, education and the local labour market that were evident in this data. Ideally, a multi-sectoral approach is needed to generate the necessary political and economic capital to overcome these inequalities and although these will be difficult to achieve, the creation of social capital that is indi- vidually tailored to local circumstances may be a critical first step and one in which sport can claim to be an important contributor.

References

Abells D., Burbidge J. & Minnes P. (2008) Involvement of adolescents with intellectual disabilities in social and recreational activities. Journal on Developmental Disabili- ties 14, 88–94.

Akrami N., Ekehammar B., Claesson M. & Sonnander K. (2006) Classical and modern prejudice: attitudes towards people with intellectual disabilities. Research in Developmental Disabilities 27, 605–17.

Avramidis E. & Norwich B. (2002) Teachers’ attitudes towards integration/inclusion: a review of the literature. European Journal of Special Needs Education 17, 129–47.

Beyer S. & Robinson C. (2009) A Review of the Research Literature on Supported Employment: A Report for the Cross-Government Learning Disability Employment Strat- egy Team. Cabinet Office, London.

Brittain I. (2004) Perceptions of disability and their impact upon involvement in sport for people with disabilities at all levels. Journal of Sport and Social Issues 28, 429–52.

Coalter F. (2010) Sport-for-development: going beyond the boundary? Sport in Society 13, 1374–91.

Coleman J. (1988) Social capital in the creation of human capital. American Journal of Sociology 94, 95–120.

Department of Health (2009) Valuing People Now: A New Three-Year Strategy for People with Learning Disabilities. HMSO, London.

DePauw K. P. & Gavron S. J. (2005) Disability Sport. Human Kinetics, Champaign, IL.

Dowling S., Menke S., McConkey R. & Hassan D. (2012) The Special Olympics Youth Unified Sports® Pro- gramme. Implementing inclusive sports. In: Managing Sport: Social and Cultural Perspectives (eds D. Hassan & J. Lusted). Routledge, London. In press.

Dykens E., Rosner B. & Butterbaugh G. (1998) Exercise and sports in children and adolescents with develop- mental disabilities: positive physical and psychosocial effects. Child and Adolescent Psychiatric Clinics of North America 7, 757–71.

Emerson E., McConkey R., Walsh P. N. & Felce D. (2008) Editorial: Intellectual disability in a global context. Journal of Policy and Practice in Intellectual Disabilities 5, 79–80.

European Commission (2007) White Paper on Sport: The Societal Role of Sport. Brussels. Available at: http:// ec.europa.eu/sport/white-paper/the-2007-white-paper- on-sport_en.htm (retrieved 21 May 2012).

Ferguson D. L. (2008) International trends in inclusive education: the continuing challenge to teach each one and everyone. European Journal of Special Needs Educa- tion 23, 109–20.

Forrest R. & Kearns A. (1999) Joined-up Places? Social Cohesion and Neighbourhood Regeneration. YPS for the Joseph Rowntree Foundation, York.

934 Journal of Intellectual Disability Research volume 57 part 10 october 2013

R. McConkey et al. • Promoting social inclusion

Harada C. M. & Siperstein G. N. (2009) The sport expe- rience of athletes with intellectual disabilities: a national survey of Special Olympics athletes and their families. Adapted Physical Activity Quarterly 26, 68–85.

Hassan D., McConkey R., Dowling S. & Menke S. (2012) The inclusion of people with intellectual disability in sport: lessons from the Youth Unified Sports Pro- gramme of Special Olympics. Sport in Society (in press).

Hoye R., Nicholson M. & Brown K. (2009) Social Glue? The contribution of involvement in sport and other community organisations to community wellbeing. 15th NCVO/VSSN Researching the Voluntary Sector Confer- ence, 7–8 September 2009, University of Warwick, UK.

Hughes C. & McDonald M. L. (2008) The Special Olym- pics: sporting or social event? Research & Practice for Persons with Severe Disabilities 33, 143–5.

Jahoda A., Kemp J., Riddell S. & Banks P. (2008) Feelings about work: a review of the socio-emotional impact of supported employment on people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 21, 1–18.

Lippold T. & Burns J. (2009) Social support and intellec- tual disabilities: a comparison between social networks of adults with intellectual disability and those with physical disability. Journal of Intellectual Disability Research 53, 463–73.

Liu Y.-D. (2009) Sport and social inclusion: evidence form the performance of public leisure facilities. Social Indicators Research 90, 325–37.

McConkey R. (2011) Leisure and friendships. In: Learning Disabilities: Towards Inclusion, 6th edn (eds H. Atherton & D. Crickmore), pp. 431–47. Churchill-Livingstone, Edinburgh.

McConkey R. & Collins S. (2010) The role of support staff in promoting the social inclusion of persons with intellectual disabilities. Journal of Intellectual Disability Research 54, 691–700.

McConkey R., Abbott S., Noonan-Walsh P., Linehan C. & Emerson E. (2007) Variations in the social inclusion of people with intellectual disabilities in supported living schemes and residential settings. Journal of Intellectual Disability Research 51, 207–17.

Orsmond G. I., Krauss M. W. & Seltzer M. M. (2004) Peer relationships and social and recreational activities among adolescents and adults with autism. Journal of Autism and Developmental Disorders 343, 245–56.

Payne W., Reynolds M., Brown S. & Fleming A. (2003) Sports Role Models and Their Impact on Participation in Physical Activity: A Literature Review. VicHealth, Victoria.

Seippel Ø. (2006) Sport and social capital. Acta Sociologica 49, 169–83.

Siperstein G. N., Harada C. M., Parker R., Hardman M. L. & McGuire J. (2005) A Comprehensive National Study of Special Olympics Programs in the United States. (Final Report for Special Olympics, Inc.). University of Massachusetts, Center for Social Development and Education, Boston.

Siperstein G. N., Glick G. C. & Parker R. C. (2009) Social inclusion of children with intellectual disabilities in a recreational setting. Intellectual and Developmental Disabilities 47, 97–107.

Smith J. A., Flowers P. & Larkin M. (2009) Interpretative Phenomenological Analysis. Sage, London.

Spaaij R. (2009) Sport as a vehicle for social mobility and regulation of disadvantaged urban youth: lessons from Rotterdam. International Review for the Sociology of Sport 44, 247–64.

Special Olympics (2011) 2010 Reach Report. Special Olym- pics, Washington, D.C.

Storey K. (2008) The more things change, the more they are the same: continuing concerns with the Special Olympics. Research & Practice for Persons with Severe Disabilities 33, 134–42.

United Nations (2005) Sport as a Tool for Development and Peace: Towards Achieving the Millennium Development Goals. Report from the United Nations Inter-Agency Task Force on Sport for Development and Peace. United Nations, Geneva.

United Nations (2007) Convention on the Rights of Persons with Disabilities. United Nations, New York.

Verdonschot M. M. L., de Witte L. P., Reichrath E., Buntinx W. H. E. & Curfs L. M. G. (2009) Community participation of people with an intellectual disability: a review of empirical findings. Journal of Intellectual Dis- ability Research 53, 303–18.

Weiss J., Diamond T., Demark J. & Lovald B. (2003) Involvement in Special Olympics and its relations to self-concept and actual competency in participants with developmental disabilities. Research in Developmen- tal Disabilities 24, 281–305.

Woolcock M. & Narayan D. (2000) Social capital: implica- tions for development theory, research, and policy. World Bank Research Observer 15, 225–49.

World Health Organisation (2007) WHO Atlas on Country Resources in Intellectual Disabilities. WHO, Geneva.

Yazbeck M., McVilly K. & Parmenter T. R. (2004) Atti- tudes toward people with intellectual disabilities. Journal of Disability Policy Studies 15, 97–111.

Accepted 1 May 2012

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R. McConkey et al. • Promoting social inclusion

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Implications of social capital for the inclusion of people with disabilities and families in community life

LESLEY CHENOWETH & DANIELA STEHLIK

To cite this article: LESLEY CHENOWETH & DANIELA STEHLIK (2004) Implications of social capital for the inclusion of people with disabilities and families in community life, International Journal of Inclusive Education, 8:1, 59-72, DOI: 10.1080/1360311032000139467

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INT. ]. INCLUSIVE EDUCATION, ]AN-MAR 2004, VOL. 8, NO. }, 59-72 f.': Taylor & Francis ~ T•yfor&FranclsGn:ttlp

Implications of social capital for the inclusion of people with disabilities and families in community life

LESLEY CHENOWETH and DANIEI.A STEHUK (Onginally received 15 January Z003; accepted 7 August Z003)

This paper seeks to ascertain the usefulness of the theory of social capital as a framework for -developing and sustaining the inclusion of people with disabilities and families in community life. We discuss the theoretical elements of social capital and assess its relevance when understanding both the experiences of people with disabilities and their families and the possible implications for policy and programme efforts to promote inclusion. Preliminary findings from two studies of the experiences and social networks of people with disabilities and their families in communities in regional and rural Australia are presented. It is argued that to date, people with disabilities and their families have largely been excluded from the broader social capital debate and that social capital thinking has had minimal influence on efforts to achieve the inclusion of people with disabilities into community life. It is further argued that new paradigms of support are needed that build capacity and social capital through working alongside individuals and families to influence not only outcomes for them, but also for the communities on which they live. The local area coordination model as it has developed in Australia since 1989 provides some instructive signposts for integrating individual, family and community approaches. It is concluded that social capital theory can make a contribution to inclusion theory and practice but we should use it with circumspection.

Embracing inclusion

For several decades, the disability movement has been working towards what has been variously termed community living, getting an ordinary life, community participation and inclusion (Bradley et al. 1994, Oliver and Barnes 1998). Presented as a major paradigm shift to community membership, the essential and overarching aim has been to create places and social spaces within our communities, where people with disabilities and families are fully accepted and are afforded the same opportunities for participation as non-disabled people. Fundamental to this is an accepted and assumed knowledge about what inclusion is and what it means.

The most substantial debates and discussions of inclusion are located within education where inclusion has been a major force within education policy and research (e.g. Slee 2001, Swain and Cook 2001). Within

Lesley Chenoweth is at the School of Social Work & Applied Human Sciences, The University of Queensland, Brisbane Q 4072, Australia; Dame/a Stehlik is at the Central Queensland University Rockhampton, Q 4702, Australia. Correspondence should be addressed to Lesley Chenoweth: e-mail~ [email protected]

Inrernational JoUNial oflndusiw Education ISSN 1360-3116 print/ISSN 1464-5173 online 10 2004 Taylor & p · Ltd http:flwww.tandf.eo.uk/journals ranc•s

DOl: 10.1080/1360311032000139467

60 LESLEY CHENOWETH AND DANIEUI STEHUK

education literature, there are numerous definitions of inclusive education and how it should be achieved. Several themes can be distilled from this literature that have relevance for the broader project of community inclusion.

First, there is an important differentiation of 'inclusion' from its predecessor 'integration' (Oliver 1996, Northway 2001). While much of this could be argued as mere semantics, there is a view that the integration/ segregation binary is more technical and involves strategies whereby disabled people are made to fit into the mainstream. The 'part' (e.g. a child with a disability) requires some action to bring it into the 'whole' overcome segregation. Inclusion, on the other hand, is positioned from a starting point of the whole having many parts but each none the less is part of that whole. Inclusion does not require conformity or assimilation but rather assumes a society which embraces diversity.

Second, inclusion is seen as a process rather than an outcome and is founded on principles and values. Uditsky (1993) proposes that there is a progression from integration to inclusion and the process of inclusion rests upon fundamental principles of membership, friendship, relationships and supports.

Notions of connections, relationships, valued roles, contributing and social networks are all part of the inclusion discourse. Such qualities, while inherently admirable and almost universally espoused, have proven to be more difficult to attain and sustain in reality across the chasms of different paradigms and values and across long periods of time. For example, in the two decades since de-institutionalization policies supported the closure of institutions and the establishment of community based care models, the full integration of people with disabilities remains an unrealized ideal.

It has been argued that the implementation of community inclusion needs a multilayered approach (Chenoweth 1997), one that embraces supporting individuals and families through services and developing communities' capacities to welcome and include people with disabilities. Northway (1997) points out that inclusion will require a much broader policy response; one which includes both disability specific as well as general s~cial policy strategies. It is acknowledged, however, that ?chie'?ng inc~usio!l will be problematic because it challenges the very way m which society IS structured and organized (Oliver 1996) and as it grows in popularity, it will become more ambiguous (Uditsky 1993).

Clapton (1999) suggests that inclusion itself is a flawed concept that implies, by its very binary nature, that when we have inclusion we also have exclusion. Clap ton argues that we need to explore notions of integrality if we are to have people with disabilities truly members of ordinary communities and groups. This concept of integrality can be considered alongside current powerful debates about social capital building as a framework for building community capacity and that while social capital has much to offer, it nevertheless suffers from its lack of consciousness about the inclusion/ exclusion dynamic.

In summary, therefore, inclusion has well-articulated principles and values and represents a policy agenda based on the social model of disability rather than the individual model. However, when we embark on the path of

SOCIAL CAPITAL AND INCLUSION 61

practice-of what do we do and how do we do it-we are confronted with a yawning chasm between principles, policies, programme and lived experience for the person with a disability and often their family. There is a need for a better theory to inform practices of inclusion in community life. Such a theory needs to span the spaces between the individual, the family and society.

Social capital

In recent years, the concept of social capital from the work of Bourdieu (1986), Coleman (1988) and Putnam (1993, 2000) has been firmly placed on global and local public agendas. Social capital has been described variously as the raw material of society created from the 'myriad of everyday interactions between people' (Bullen and Onyx 1999: 3) and as the social fabric or glue that makes us human (Putnam 1993, Cox 1995). At a more practical level, it refers to the networks and norms that allow people to work together to resolve problems and achieve common goals (Stone 2000).

Social capital has gained currency in research and social policy for more than a decade (Wall et al. 1998, Healy and Hampshire 2002). It has been enthusiastically commandeered by governments seeking to fmd ways to develop stronger communities which will have the capacity and leadership to find local solutions to local problems. The overarching aim is to develop such community capacity so that the resultant stronger communities can support weaker individuals and families and that strong families will support weaker communities (Stone 2000).

Social capital can be understood as one of the different forms of capital (Bourdieu 1986, Coleman 1988):

• Economic capital including financial resources such as income, money or loans.

• Physical capital including buildings, housing, roads and machines. • Human capital that refers to the knowledge and skills acquired by an

individual. • Cultural capital that refers to the knowledge, skills, forms of

expression that are culturally valued and distinguish some groups from others.

However, social capital has undergone several metamorphoses since its inception over 20 years ago. It was first introduced by Coleman (1988) to describe the networks, ties and relationships established between individuals in the context of wider social systems. His work was directed at bringing together the individualist and sociological traditions and he argued that social capital was a concept by which these two traditions could be synthesized (Midgely and Uvermore 1998).

Bourdieu (1986) used the term to refer to the advantages and opportunities that came to people through membership of various commu- nities and groups. Bourdieu saw social capital as a resource that accrued to an individual and later defined it as:

62 LESLEY CHI!NOWI!TH AND DANII!LA STI!HUK

the sum of all resources, actual or virtual, that accrue to an individual or a group by virtue of possessing a durable network of more or less institutionalised relationships of mutual acquaintance and recognition. (Bourdieu and Wacquant 1992)

The more recent popularization of social capital is largely due to Putnam's (1993) work in Northern Italian communities in the early 1990s. Putnam argued that communities with high levels of civic engage- ment also recorded higher levels of economic growth. Later, in his popular best seller Bowling Alone (2000), Putnam further argued that social capital in America was declining as people no longer joined voluntary associations. As a result, Putnam's work has shifted the focus of social capital from a characteristic of the individual to something that is the property of groups or even nations (Portes and Landolt 1996). It is this model of social capital that has been taken up by governments of all political persuasions. The approach enabled a synthesis with the self-help, conservative economic approach favoured in the past decade, as well as linking to the larger ideological stand of 'enabling people with disabilities to live in their own homes, cared for by their own families'.

While there is a growing literature on social capital and its application to various fields of theory and practice, several themes have been identified (Bullen and Onyx 1999) for the general population. These form the key elements of social capital and are briefly discussed below, with examples of how these elements should operate for people with dis- abilities and their families.

Participation

One of the key concepts in social capital is the participation in vario~s networks through family and friends, neighbourhoods and work. Social capital is generated through these networks and associations. This partici- patory approach would suggest that people with disabilities and their families become involved in naturally occurring networks within their own communities. In fact, as we discuss further below, our research has found that isolation from such networks is more often than not the powerful experience of vulnerable people.

Reciprocity

Bullen and Onyx (1999) suggest that social capital is about the exchange ~f resources or supports or services between people. It is not based on the 'Immediate return' requirement that is inherent in the business contract but rather on the notion that people provide a support to others based on a general expectation that someone will return the favour at some time in the future. Again, our recent research has found that such reciprocity is less likely when the person has a disability, or the family is caring for a person with a disability.

SOCIAL CAPITAL AND INCLUSION 63

Trust

All discussions of social capital refer to trust-that people will act in mutually supportive ways and do no harm to each other. The principle of reciprocity rests on this basic requirement of trust. For many of the people that we have met in our research, their difference tends to alienate people. Their 'naturally occurring networks' based on trust are largely limited to their immediate family members or to paid professionals.

Social norms

Social capital is said to be related to the upholding of social norms. This is one of the most powerful determinants of difference. Social norms within society established what it is to be 'normal' and to be a member of the 'inner core' of that society. To have a disability, to be mentally ill or infirm, means that one of the most powerful norms is challenged. It becomes extra- ordinarily difficult for an individual to overcome such norms and establish their capacity within a community.

Common resources

Bullen and Onyx (1999) suggest that all the factors above create communities with a strong sense of and commitment to shared ownership of resources. These are pooled resources owned by the community separate individuals. Such resources are 'tapped into' by competent individuals and community leadership enables an equitable redistribution of such resources. However, such resources are reliant on some form of 'giving back'. It becomes difficult continually to draw on them, without being able to replenish them.

Proactivity

Social capital constructs the citizen as a creator, rather than a consumer of resources. This makes establishes its fundamental difference to, for example, the human services where people are in receipt of services. Social capital is predicated on having community members who are proactive, engaged and active participants solving not only current but potential problems. Such proactivity is largely denied to people with disabilities and their families.

Tolerance of diversity

This important and fundamental aspect is somewhat contested. Critics argue that social capital promotes inclusion of only those who 'fit in'. Putnam (2000) argues that there is a connection between high social capital and tolerance of diversity and that America is a more tolerant society now

64 LESLEY CHENOWETH AND DINIELA STEHUK

than it was in the 1950s. Such a broad statement, which tends to elide the growth of homelessness, of poverty and of class and race differential in all Western industrialized nations, demonstrates the need to more carefully research the impact of capitalism, and to deconstruct some of the discourses surrounding social capital.

Bonding, bridging and linking social capital

While largely concerned with the relationship between social capital and economic development, Woolcock and Narayan (2000) outline a summary of social capital that we believe is useful for practice. They outline three forms of social capital: bonding, bridging and linking. First, bonding social capital refers to those horizontal ties within a community such as relationships between families, friends and individuals. Such ties give people a strong sense of identity, purpose, common understanding and mutual support. Second, bridging social capital refers to those links which are made across socio-economic, religious, cultural or gender social divides such as formal and informal links beyond one's personal networks to other formal and informal resources. Finally, linking social capital comes from alliances between individuals and communities with persons in positions of power such as politicians or the chief executive officers of business corporations or community organizations. Through connections with such individuals, people can have direct access to others with the power to make decisions.

We would argue that to ensure robust and sustainable communities, it would appear that all three forms of social capital are needed, and for those individuals who are the most vulnerable in our communities, policies and practice need to be founded on the fundamental principle that not every individual can simply 'switch onto' social capital building. The three forms-bonding, bridging and linking-are all predicated on action b_Y others. In other words, social capital does not emerge fully formed, It actually requires action by others to enable it to be accessed by all.

Critiques of social capital

There are a number of legitimate criticisms of social capital. First, social capital has been revamped from its original meaning as intended by Coleman to link individuals with social systems and Bourdieu to explain how some people got access to privileged and powerful positions because of their social connections (Portes and Landolt 1996). Both Coleman and Bourdieu envisaged social capital as a resource of the individual-although neither Coleman nor Bourdieu considered those most vulnerable in society. Putnam (1993) turned social capital into a resource that is held by groups for the benefit of society as a whole. In short, social capital was proposed as an answer to social problems. It has become a commodity that communities need to have. As stated above, it is this transformed 'panacea' version that so appeals to governments and those who develop social policy.

SOCIAL CAPITAL AND INCLUSION 65

Much of the discussion on social capital also does not adequately address the 'dark side' of some social networks. Not all social groups are sustaining in the long term, e.g. members of gangs engaged in criminal activity may be strong on bonding ties but not give any credence to the need for bridging ties into other social networks. Some rural communities are similarly strongly bonding but this can be a stifling experience for some members of that community or impenetrable for newcomers trying to 'fit in'.

The very interactions that form the substance of social capital are also increasingly harder to sustain in a society where the very standards of success (and therefore being included) are rising and where there is an increasing expectation that we should all be able to look after ourselves. The ethos of 'looking after number one' or the self-help model discussed above, produces a more inward looking populous (Everingham 2001) rather than one prepared to support each other.

Local area coordination

This section outlines the research conducted, its methodology and purpose. Local Area Coordination is a new model of service delivery, established in Western Australia in the early 1990s, and most recently in Queensland and New South Wales. This study, as part of two larger projects, involved people with disabilities and families who were in contact with Local Area Coordination services in Queensland and New South Wales.

In depth semistructured interviews with individuals with disabilities or a family member were carried out in people's homes in five regional and rural communities in the State of Queensland, Australia, and five regional and rural and one metropolitan community in New South Wales. All interviews were conducted between 1999 and 2002. The majority of participants lived in provincial centres, small towns or on farms or properties. A small number (six) lived in metropolitan suburban settings.

Eighty-six interviews were completed and covered the experiences of living in the community and the range of family friends and formal relationships. People were also asked what they thought their community was like in terms of its attitudes to people with disabilities generally. In addition, 71 of those interviewed also completed social network maps (Tracy and Whittaker 1990) as part of the interview. The maps recorded the number and type of social contacts and relationships and the degree of closeness to the person with a disability. In the case of children or those unable to complete it for themselves, a close family member completed the map on their behalf. The maps recorded relationships with close and extended family, friends, acquaintances and the services and agencies involved in the person's life. These included generic services such as health care, transport, education as well as disability specific services such as accommodation support, respite or early intervention and therapy. Inter- views were transcribed, coded and analysed using the computer software package, Ethnograph. Themes were generated from these data and recorded. Detailed findings and generalized analysis from the social network maps are reported elsewhere and are not presented here.

66 l.ESl.EY CHENOWBTH AND DANIF.LA STEHUK

Implications for people with disabilities and their families

Several issues arise when considering the ways in which social capital theory and ideas might be applied to the experiences of people with disabilities and families. We identified five themes from our findings relevant to social capital.

Few resources to invest in social capital building

First, social capital would appear to be predicated on people having sufficient economic and emotional resources to allow a person to participate in networks. People who do not have secure economic and family situations or who are facing a crisis of some sort are often internally focussed on the task of survival with no 'surplus' resources to contribute to the building of social capital. Paradoxically, these individuals are clearly those who would benefit from being a member of a community with high social capital. The individuals and families in our study were often fully occupied with tasks associated with living with a disability. For example, people were fighting for in-home support funding, or negotiating for their child to attend the local school or having to attend numerous health appointments-sometimes travelling long distances to do so. Some parents were also occupied in hands-on carer roles bathing, feeding and attending to the daily needs of their child or family member.

For some people, involvement with internally focussed tasks of living and survival were episodic, for example in cases where the person has a mental illness or multiple sclerosis. For others, resources were fully utilized at various critical periods or transitional life stages as in the case of one family who found they were fully occupied with finding a school that would accept their child. Another example was that of a family whose child with spina bifida had to undergo renal surgery which required one parent to stay at the hospital many hundreds of kilometres away. However, for many families with a member who has a disability, their emotional and financial resources were stretched most of the time. As one mother of three children, one of whom had severe physical and intellectual disabilities, put it:

I would dearly love to be involved in the soccer club where my other son plays. He misses out a lot you know. Just to go to see him practice one afternoon a week would mean a lot. But who can I get to take care ofJ?There's no-one who can do that. I can't just leave him. I am 80 tired just doing all that physical work too. .

Social isolation

There is significant evidence to show that many individuals with disability and their families are socially isolated (Gething 1997, Kitchin 1998, Kerr and Mclntosh 1999).

Our study also found that people were socially isolated from both family ~n~ o~er social contacts. Given the nature of this sample with many people hvmg m regional and rural areas, some of this isolation may be explained

SOCIAL CAPITAL AND INCLUSION 67

through geographical factors. However, many people expressed the view that they did not feel part of or even welcomed in the local community. Our research found that this was true for those families who had lived in the area for a long time, as it was for those who had come to the community more recently. Poignantly, one family, where the adult son was living with an acquired brain injury, and whose mother and father had been born in the town, were experiencing powerful rejection from a community that previously, they had thought of as inclusive and accepting.

Many people with disabilities and their families have a greatly reduced capacity to form networks. If reciprocity is a central tenet of social capital then the capacity of some families to contribute will diminish as they focus on internal tasks of everyday living, supporting their family member with physical and daily living needs As one parent described: 'I was just so tired. I was just burnt out completely with looking after her'. This means that they are therefore not able to build those networks that may be able to provide some support when needed. This sets up a cycle of rejection where the demands of disability reduce the capacity to invest in social networks and therefore leads to social isolation. Being socially isolated means there is very limited access to external supports consequently, individuals increasingly rely on internal resources (from within their own family) to meet those needs.

Reality of rejection

While communities may be high in social capital, they may also exclude people with disabilities as different from other community members. Sometimes this exclusion takes a violent form. Our research highlighted the reality of rejection of many people who spoke of their experiences of bullying, exclusion and violence. One family moved their child with a disability from the local school because he was repeatedly bullied by other children. The school's response was to send him home to avoid further buJlying thereby excluding him from school. Another woman with physical disabilities who had her own small office services business found she could not 'break into' the business community because she was not known to the business leaders and her efforts to make contact with them had failed. Another man with a psychiatric illness and an intellectual disability and living in a small country town was beaten up and robbed of cigarettes twice in his local park. He was admitted to hospital for surgery to his shoulder, which is now seriously impaired. Perhaps the most concerning aspect of this rejection is the potential for violence against the person with a disability that is so often present.

Invisible volumary contributions

One of the key elements of social capital is the voluntary contribution to community and civil society. Our research over many years has underlined the important fact that many people with disabilities and parents of people

68 LESLEY CHENOWBTH AND DANIELA STEHUK

with disabilities do make significant voluntary contributions to our society on a continuing and regular basis. This occurs on two levels. First, people contribute more formally as members of groups or committees such as boards of disability service organizations, advocacy groups, advisory committees to government or lobby groups for better services. Many people reported that they had been a broad member of a local service for several years, or had participated in other committees for government. Second, parents and family members also contribute less formally, though sub- stantially in terms of efforts, through the unpaid caring work they perform daily and for many years. For example, a mother of a man of 35 years of age with Down's syndrome, explained how she had never had any support from any service or agency after she was asked to keep her son at home from school after 3 weeks in the first grade nearly 30 years ago. Over those years, she has cared for him, given him an education (albeit rudimentary) and prepared him for adult life in the small town where they live without ever having any respite or formal service assistance.

We argue that much of this voluntary contribution is invisible to the wider community yet clearly represents significant contributions made by people with disabilities and families to their communities. Who sees this caring contribution or notices the impact that it has for the wider community? Much of it is undertaken 'behind closed doors', and the energy it requires leaves little capacity for other, more public, activity. There is another question underpinning this phenomenon. Are some voluntary contributions are more valued than others and therefore seen to more actively contribute to social capital building? Hampshire and Healy (2000), in a study of social capital involving a non-profit organization, argue that social capital contributions of non-profits are undervalued. We argue that this is even more pronounced where the contribution is at an individual level.

We would suggest that our research shows that perhaps the issue of reciprocity requires that the contribution needs to have immediate and recognizable benefits to the contributor and in the case of vulnerable people, such immediate reciprocity becomes difficult to maintain.

Bonding social capital of disability groups

Our findings suggest that some people with disabilities and families do have links with other individuals and families and that the resultant networks are supportive. This was also reported by Clear (1999) in his study of experiences of families with a child with a disability. He found that families were more supportive of and connected to other families with children with disabilities than to others in the general community. Our research involved a number of parents who were members of State-wide parent advocacy organizations or who were connected to other parents through local lobbying or self-help efforts. We also interviewed some people with disabilities who similarly chose to form informal groups or friendships, or who were members of self-help groups. People reported that these social contacts were 'easier' because there was less risk of rejection and that the

SOCIAL CAPITAL AND INCLUSION 69

other person 'knew what it was like'. The energy associated with dealing with potential rejection by 'normal' groups could then be used more effectively.

Such networks appear to be high on bonding social capital but weak on bridging social capital. For inclusion to happen it is apparent that all types of social capital are necessary.

Bonding social capital was valued by the people we met who reported that they had some social contacts in an accepting environment. However, they did not feel they could call on such people for assistance or support because they were acutely aware of the caring efforts that they were engaged in. In needs to be pointed out that true inclusion is about the participation in ordinary and general social networks not segregated ones. We are certainly not advocating a separation model here-quite the contrary.

Elsewhere, we have written of the important role of the human service practitioner in building the bonding social capital capacity of individuals and their families (Chenoweth and Stehlik 2001). Note that here there is some early evidence that governments, more recently, have become aware of the importance to support social capital building while taking note of the need for inclusion. The Local Area Coordination model was estab- lished, in part, to deal with this paradox-time will tell whether it will achieve this goal.

Some conclusions

In the integration of inclusion with social capital building, our research has identified some obvious fragility in the current established model. At present, social capital remains unrealized for vulnerable people who are different. We believe there are potential benefits in working towards establishing an inclusive model of social capital building. However, such a model would need to take into account a number of concerns and issues.

First, social capital frameworks may have something to offer the inclusion movement but we should be cautious as to its potential. Over the past 30 years, the disability movement has enthusiastically embraced many 'fads' that have become viewed as quick fixes to eradicate exclusion or rejection. Social capital may be in danger of being regarded as just another trend that will not deliver enduring positive outcomes for people with disabilities and their families.

Second, that the disability movement has much to offer to social capital theory and practice. People with disability and families are part of a large number of people viewed as different or Other from the mainstream of society. Much of social capital scholarship has hitherto paid little attention to the relationship between difference and social capital and the question of whether or not one can access or build social capital as long as one is a member of the in-group and not Other. The experiences of people with disability may shed light on these issues. Additionally, the voluntary contributions of people with disabilities and families that are unrecognized or undervalued also pose questions about the comprehensiveness of current social capital theorizing.

70 l.ESLEY CHENOWETH AND DANIELA STEHUK

Third, social capital should not be considered as a panacea for social problems across all communities. We believe that there is a danger in promoting social capital per se as a policy and programmes solution to social problems. Social capital is useful, however, in developing a shared understanding of complex processes within groups, organizations and communities, and can be an important tool for practice that seeks to promote community engagement (Hampshire and Healy 2000).

Importantly, the tolerance of diversity needs to be supported in any social capital framework. We suggest that any theoretical framework addressing inclusion must address, at the most fundamental level, the experiences of people with disabilities and families. Social capital has potential for informing policy and practice on community building, social networks and community participation: all areas integral to inclusion.

To make social capital frameworks more relevant for the disability sector further work is needed on diversity and difference. Creating sustainable communities demands the acceptance of diversity and difference. A community cannot be sustainable unless it incorporates all of its citizens. There is also an inherent contradiction in social capital and values of individualism and self-responsibility. This raises a question about whether a self-help model can actually build community.

Our practice on behalf of people with disabilities and their families requires us to consider both individual and community strategies. We need to think holistically, and as a concept, social capital can establish an integrated whole. The bonding, bridging and linking social capital approa- ches need to be integrated for inclusion to work. We should focus on all three aspects, not just choose the easy option.

This is particularly relevant for those involved in inclusive education. The local school is a rich site for the development of social networks for children with disabilities and their families, i.e. a source of social capital. There is also potential for social capital generation through the inclusion of adults with disabilities in other educational processes such as technical colleges, adult education courses and community-based life-long learning programmes. We acknowledge that it requires more than mere presence in such community situations to foster the development of real relationships for people with disabilities and that the building of bonds, bridges and links requires additional supports. Facilitating such supports is often a challenge for teachers, parents, children and community members and frameworks which will assist us to develop further our understanding of the complexities of inclusion and how to support it are much needed. Social capital may provide such an integrative framework.

Social capital has received little attention within the disability movement just as social capital thinking has not incorporated the perspectives and experiences of people with disabilities and their families. We believe there is potential in social capital theory and practice especially in its application to ~ommunity building and family life. Social capital has alread~ been ~se~ to mform policy and programmes in many areas and arenas and 1ts apphcauon is expanding rapidly. It has appeal in that it is a concept that can be quickly grasped and understood by practitioners, policy-makers, people with disabilities, families and ordinary members of the community. Social capital

SOCIAL CAPITAL AND INCLUSION 71

may provide one way of integrating the individual, family and community levels of intervention that is essential if inclusion is to become a reality.

This provides an exciting opportunity for those involved in inclusion efforts to develop knowledge about how social capital works and how we can achieve positive outcomes for people with disabilities, their families and the communities in which they live.

References

Bourdieu, P. (1986) The forms of capital. In J. Richardson (ed.), Handbook of Theory and Research for the Sociology of Education (New York: Greenwood), 241-258.

Bourdieu, P. and Wacquant, L ]. D. (1992) An Invitation to Reflexive Sociology (Chicago: University of Chicago Press).

Bradley, V., Ashbaugh, J. and Blaney, B. (eds) (1994) Creating Individual Supports for People with Developmental Disabilities (Baltimore: Brookes).

Bullen, P. and Onyx, J. (1999) Social Capital: Family Support Services and Neighbourhood and Community Centres in NSW (Sydney: Family Support Services Association of NSW).

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Chenoweth, L (1997) Is there a community for us? Deinstitutionalisation policies in Queensland. In R. Adarns (ed.), Crisis in the Human Services: National and International Issues. Selected papers from a conference held at the University of Cambridge, September 1996 (Kingston Upon Hull: University of Lincolnshire and Humberside).

Chenoweth, L and Stehlik, D. (2001) Building resilient communities: social work practice in rural Queensland. Ausrralian Social WOrk, 54, 57-61.

Clapton, ]. (1999) A transformatory ethic of inclusion: rupturing 'disability' and 'inclusion' for integrality. Unpublished PhD dissertation, Queensland University ofTechnology, Brisbane.

Clear, M. (1999) Caring culture and the politics of parent/professional relations. Australian Journal of Social Issues, 34, 119-132.

Coleman, ]. (1988) Social capital in the creation of human capital. American Journal of Sociology, 94(Supp1.), S95-Sl20.

Cox, E. (1995) A Truly Civil Society, 1995 Boyer Lectures (Sydney: Australian Broadcasting Cominission).

Everingham, C. (2001} Reconstituting community: social justice, social order and the politics of community. Ausrralian Journal of Social Issues, 36, 105-122.

Gething L (1997) Sources of double disadvantage for people with disabilities living in remote and rural areas of New South Wales, Australia. Disability and Society, 12, 513-531.

Hampshire, A. and Healy, K. (2000) Social capital in practice. Paper presented at the Family Futures: Issues in Research and Policy, 7th Australian Institute of Family Studies Conference, Sydney, 24-26 July 2000.

Healy, K. and Hampshire, A. (2002} Social capital: a useful concept for social work? Australian Social WOrk, SS, 227-238.

Kerr, D. and Mclntosh, J. (2000) Coping when a child has a disability impact of parent-to-parent support. Child-care Health and Development, 26, 309-322.

Kitchen, R. ( 1998) 'Out of place. Knowing one's place': space, power and the exclusion of disabled people. Disability and Society, 13, 343-356.

Midgely, J. and Livermore, M. ( 1998) Social capital and local economic development: implications for community social work practice. Journal of Community Practice, 5, 29-40.

Northway, R. (1997) Integration and inclusion: illusion or progress in services for disabled people? Social Policy and Administration, 31, 157-172.

Oliver, M. (1996) Undentanding Disability: From Theory to Practice (Basingstoke: Macmillan). Oliver, M. and Bames, C. (1998} Disabled People and Social Policy: From Exclusion to Inclusion (London:

Longman}. Pones, A. and Landolt, P. (1996) The downside of social capital. American Prospect, 26, 18-23. Pretty, G., Rapley, M. and Bramston, P. (2002) Neighbourhood and community experience, and the

quality of life of rural adolescents with and without intellectual disability. Journal of InteUectual and Dew/opmental Disability, 27, 106-116.

72 LESLEY CHENOWETH AND DAN!EI..A STEHUK

Putnam, R (2000) Bowling Alone: The Collapse and Revival of Civic America (New York: Simon & Schuster).

Putnam, R with Leonardi, R. and Nanetti, R. Y. (1993) Making Democracy tfbrk: Civic Tradicions in Modern Italy (Princeton: Princeton University Press).

Slee, R. (2001) Social justice and the changing directions in educational research: the case of inclusive education. International Journal of Inclusive Education, S, 167-177.

Stone, W. (2000) Social capital, social cohesion and social security. Paper presented at the Year 2000 International Research Conference on Social Security, 25-27 September, Helsinki.

Swain, ]. and Cook, T. (200 1) In the name of inclusion: 'We all, at the end of the day, have the needs of the children at heart'. Critical Social Policy, 21, 185-207.

Tracy, E. and Whittaker,]. (1990) The social network map: assessing social support in clinical practice. Families in Sociery: The Journal of Contemporary Human Services, 71, 461-470.

Uditsky, B. (1993) From integration to inclusion: the Canadian experience. In R. Slee (ed.), Is There A Desk With My Name On It? (London: Falmer).

Wall, E., Ferrazzi, G. and Schyer, F. (1998) Getting the goods on social capital. Rural Sociology, 63, 300-322.

Woolcock, M. and Narayan, D. (2000) Social capital: implications for development theory, research and policy. World Bank Research ObsertJer, 1S, 225-249.

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Social capital, social inclusion and services for people with learning disabilities

Peter Bates & Fabian A. Davis

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Disability & Society, Vol. 19, No. 3, May 2004

Social capital, social inclusion and

services for people with learning

disabilities

Peter Batesa* and Fabian A. Davisb aNational Development Team, Ipswich, UK; bBromley Mental Health Services, Oxleas NHS Trust, Chislehurst, Kent, UK

Both social capital and social inclusion have emerged as significant concepts for human services in the last decade and yet their inter-relationship remains largely unexplored. This article argues that, whilst they are similar in their vision for a healthy society, they adopt sufficiently different perspectives to stimulate and challenge each other. This can be well illustrated by reference to services for people with a learning disability. Commissioners and providers of learning disability services are encouraged through this article to harness both concepts in order to assist in the process of modernizing services and increasing life opportunities for the people they support. It is argued that it is not possible to understand the full consequences of adopting either theoretical position without an adequate understanding of the other. Examples are given of the implications of this for advocacy services, day opportunities, rural communities, transition and staff training.

Introduction

The concept of social capital (Putnam, 2000) has become popular just as the English White Paper ‘Valuing People’ (Department of Health, 2001b) has required learning disability services to work towards social inclusion. This article points a spotlight on useful insights in both social capital and social inclusion approaches that may help in the development of learning disability services, and notes some of the hazards of an unthinking adoption of either of these frameworks in isolation from the other.

Social capital: investment in human society

Mrs Rose has decided to re-open the old school in our village as a community centre. She sent round a questionnaire asking each household how they could contribute their time and skills. She had 94 responses—more than the number of households in the village. As she says, ‘I don’t know why I’m doing this. I’m nearly 80 and I won’t live to see this place open. But there’s such a lot of talent in this community and somebody’s got to get people together.’ I always had the capacity to get involved, but I’m only using my capacity because Mrs Rose asked. (Ritchie, 2001)

Robert Putnam (2000) calls buildings, plant and equipment physical capital; people,

*Corresponding author: National Development Team, Unit 10, Hill View Business Park, Old Ipswich Road, Claydon, Ipswich IP6 0AJ, UK. Email: [email protected]

ISSN 0968-7599 (print)/ISSN 1360-0508 (online)/04/030195-13  2004 Taylor & Francis Ltd DOI: 10.1080/0968759042000204202

196 P. Bates & F. A. Davis

skills, knowledge and experience human capital; and social networks and norms of trust and reciprocity social capital. This distinction was taken up Prime Minister Tony Blair when he said that ‘in the future, we need to invest in social capital as surely as we invest in skills and buildings’ (Corrigan & Miller, 1999).

Putnam (2000) goes on to observe that the term ‘social capital’ has been coined at least six times during the twentieth century, while Schuller (2000) has suggested that its roots lie in a variety of intellectual traditions, including Alexis de Tocqueville (1835) on voluntary associations, Elizabeth Bott (1957) on social networks, John Dewey (1929) on shared concerns, Jurgen Habermas (1984) on trust, Amitai Etzioni (1996) on communitarianism and Albert Bandura (1977) on self-efficacy.

Despite this rich intellectual heritage, the notion of social capital remains fluid and lacks a precise definition, so, for example, Grootaert (2001) offers a list of 50 indicators that have been used in empirical studies, while the Social Action Research Project (Health Development Agency, 1999) baseline study used the following six components as a working definition:

• Participation in the local community: do you think of yourself as part of the local area? Are you an active member of a local group? Have you participated in voluntary or religious activities?

• Reciprocity: have you done or received a favour from someone living nearby? Do local people look after each other? Who would you turn to for advice or to share some good news?

• Feelings of trust and safety: in your own home or going out at night. Have you been a victim of crime? Can people round here be trusted?

• Social connections: have you chatted with family, friends or neighbours recently? Do you have close friends round here? How many people did you talk to yesterday? Do you go outside this area to visit your friends?

• Citizen power: have you formally complained about a local service? Have you joined a committee to fight for a local cause?

• Community perception: do you pick up other people’s rubbish? Do you enjoy living here? Are there enough community facilities and public transport?

Social inclusion

Social inclusion is another fluid term with a variety of meanings (Bates, 2002a). For the purposes of this article, social inclusion means ensuring that people with learning disabilities have full and fair access to activities, social roles and relationships directly alongside non-disabled citizens. Over the past 30 years an informal network of writers (Wolfensberger, 1972; O’Brien, 1987; Falvey et al., 1994; Rusch & Hughes, 1989) have shown how support can be provided so that people with disabilities can be employed rather than attend a sheltered workshop, live in their own home rather than in a hostel, and participate in friendships and community life with a diverse array of citizens, rather than conducting their whole lives within segregated disability services.

Since New Labour established the Social Exclusion Unit in 1997 (Social

Social capital, social inclusion and services 197

Exclusion Unit, 1998), the notion of social exclusion has also been used to embrace poverty, unemployment and threats to community safety, along with poor access to healthcare and decent housing.

Recent policy convergence

We would argue that social capital is an idea whose time has come. It has been enthusiastically adopted by the World Bank, American, European and UK governments, and has permeated the areas of health, education, community care, community regeneration and employment (Mitchell & Harrison, 2001).

Increasing social capital is expected to generate improvements in all the above areas because it is argued that increased civic participation will invigorate govern- ment, information flowing through informal networks can enhance job prospects, supportive friendships buffer against distress and illness, reciprocal relationships create a culture where learning and contribution flourishes, and heightened trust leads to a reduction in crime. As such, social capital theory should be of interest to Local Strategic Partnerships, Learning Disability Partnership Boards, Health Improvement Programmes, Community Safety Partnerships, and a host of other initiatives that directly or indirectly impact the lives of people with learning disabilities.

The 2001 White Paper ‘Valuing People’ (Department of Health, 2001b) intro- duces person-centred planning (O’Brien, 1987) as a driver to promote service change. The White Paper assumes that the majority of people with a learning disability will want to move towards an independent life in the community, leading to the demise of segregated services. A major part of this change is to be day service modernization by 2006 and the promotion of social inclusion will be an essential component of this change (Love et al., 2002). As a result, many services are looking towards social inclusion advocates and social ‘capitalists’ for a comprehensive and detailed conceptual framework within which to plan and manage such major change.

Thus, developments in learning disability provision, social inclusion and social capital all meet in the growing policy emphasis upon citizenship, so that ‘the world disabled people will occupy will extend way beyond their specialist services’ (Simons, 1998).

Contrasting social inclusion and social capital

The introduction above has hinted at some significant challenges to learning disability services that emerge from singular analyses of the implications of adopting either a social capital or social inclusion perspective. The Health Development Agency’s framework for social capital is now used to look at some of these areas and to explore implications where the two theories need to be considered in tandem. Real examples from services for people with learning disabilities are used to illustrate the synergy or divergences between the two theoretical discourses.

198 P. Bates & F. A. Davis

Participation in the local community

Those people who have been deliberately segregated in prisons, long-stay hospitals and other institutions are rarely mentioned in social capital thinking, while social inclusion advocates strongly assert that society should find ways of bringing this group back home (Mansell, 1993). A brief glance at policy documents such as Valuing People would suggest that services should promote inclusion, but despite this, current service arrangements often segregate learning disabled people, particu- larly those with the least natural ability to articulate their interests.

However, bringing people back home demands more than relocating their beds— relationships have to change as well. In both social capital and inclusion thinking, service users are recognized as citizens, and the traditional focus on the relationship between worker and service user is replaced by an emphasis upon the reciprocal relationship between citizen and community:

Two women with learning disabilities wanted to take up yoga. No local groups existed, so the worker found a tutor and a community hall, and put adverts around the neighbourhood. A mixed group of citizens joined and everyone welcomed each other—including the people with learning disabilities. Nine years later the group is still running—long after the worker moved to another job. (Christine Burke, personal communication)

This paradigm shift is also enacted as people are supported to take up open employment and to participate in community Timebanks (Reed & Boyle, 2002) and local exchange trading schemes (Seyfang, 2001). Advocates of social inclusion have rightly highlighted the importance of waged employment as a route to income, status and relationships, while social capitalists point the spotlight on informal roles and relationships. In addition to the opportunity to earn a wage, people with learning disabilities may participate in the community via education, volunteering or leisure pursuits.

Mainstream learning providers have a renewed focus upon developing citizens’ social and civic skills, and this may lead to a renaissance of non-vocational training to counter the recent emphasis upon developing only those skills that directly contribute to the economy. Such a shift in emphasis would have a disproportionately beneficial effect upon people with learning disabilities.

Similarly, a social capital perspective highlights the benefits of volunteering. For many years, services have arranged a few opportunities for people with learning disabilities to become volunteers in the community. Each placement must find a path between employment (volunteering as work simulation in order to attain vocational experience and skills) and community participation (volunteering as a means to harness altruistic endeavour and build affiliation and membership). Social capitalists helpfully wrest volunteering back from a single-minded attempt to use volunteering solely as work preparation and remind us that volunteering builds community, trust and reciprocity. Care is needed to ensure that volunteering opportunities are safe, rewarding, and respectful and contribute to the formation of social capital (Bates, 2002b):

The VALUES project based at Leicester Volunteer Centre supports people with

Social capital, social inclusion and services 199

learning disabilities to contribute their time and skills to the local community. Individ- uals make a difference in the museum, charity shops, environmental projects, and lunch clubs—all sorts of places.

Reciprocity

The way in which people with learning disabilities are perceived by others can be even more important to their capacity to contribute to the development of social capital and their own social inclusion than their disability. For example, if members of the public label people with learning disabilities as fraudulent, attention seeking, disinterested in civic affairs or unable to make a positive contribution to the community, this will limit their potential for reciprocal relationships with non- disabled community members. While it can be hard to identify the unique contribu- tion that a particular person enjoys making and for which they will be genuinely appreciated, without opportunity this may never be discovered at all.

The two theoretical positions bring complimentary insights to the topic of re- ciprocity. Putnam (2000) makes a distinction between bonding and bridging rela- tionships in which bonding relationships form between people who share a common bond, while bridging relationships bring diverse people together.

Respectful bonding relationships between people with learning disabilities are important, of course, but social inclusion theorists envisage a society in which bridging relationships span all the structural divisions in society (Amado, 1993). An included life with an ordinary home, job and leisure pursuits (rather than segregated in residential units, day centres and ‘group trips’) is a prerequisite for building these socially inclusive bridging relationships. Social inclusion theorists argue that society should nurture relationships between people with a learning difficulty and those without (e.g. Amado, 1993) and assert that everyone can feel at home in mainstream society, while social capital theorists do not make this explicit. Any service would be limited by adopting a social capital analysis alone as this could lead to a diminished vision that confined bonding relationships to those between peers in a day centre and bridging relationships to those that formed between centres, such as at the Special Olympics.

Bridging social capital provides what Granovetter (1973) referred to as weak ties—a valuable source of information and contacts that can help people with everything from job-finding to problem solving. Similarly, while Putnam rather derides ‘mail-order’ membership, belonging to an association that collects subscrip- tions and provides publicity can contribute to a sense of identity and provide material for conversation with others. Social capital reminds us of the importance of nurturing these connections with ‘insignificant others’ alongside more intimate connections:

Building sustainable relationships

Seventeen people with learning disabilities have fenced 144 gardens on the Oakwood Estate in Bridgend. As well as forming a tight-knit team, they have gained work experience and qualifications in amenity horticulture by linking with the local college. One group member said ‘my self esteem has improved, I feel physically fitter and I feel

200 P. Bates & F. A. Davis

being part of the group is helpful for character building.’ Using locally grown renewable timber, the fencing has created ‘defensible spaces’ as a means of reducing crime and nuisance. Stolen cars used to be driven on the lawns between the houses, but now that the gardens are in place there is no room. They say that it is all about creating sustainable projects and sustainable relationships. The people with learning disabilities feel safe and welcome on the estate. Local residents hold the project in very high esteem and they advocate for and defend its members if the need arises. Local children have joined in with painting the fences during school holidays, leading to a reduction in vandalism. One tenant said, ‘We find that friends and neighbours are far more willing to pull together and to help each other, and are once more gaining pride and enjoyment in our community’.

Feelings of trust and safety

Putnam’s position moves us from the privacy of a friendship into the public arena by including the concept of ‘thin trust’ in his description of social capital. Thin trust is present when strangers view each other as potential friends and absent when they regard each other as potential enemies. Campbell’s team (1999) failed to find much thin trust in an English housing estate, and the MENCAP (1999) inquiry into bullying showed just how reasonable it is for many people with learning disability to avoid public spaces and public transport, especially the school run.

Unfortunately, inclusion advocates tend to ignore the shameful reality of bullying, oppression and discrimination that is a daily experience for many people with learning disabilities (MENCAP, 1999). It is curious to note that Valuing People is silent on the matter of bullying, while the Department of Health does require mental health services to address it (Department of Health, 2001a). It is here that social capitalists have the advantage, since their goal of increasing thin trust precisely attends to this agenda.

We all have to run the gauntlet of meeting strangers from time to time and negotiate our way through thin trust in order to locate the new friends and colleagues with whom we might enjoy thick trust, but there are extra challenges for visible minorities, and this includes some people with learning disabilities.

Social capitalists task us with addressing these problems by challenging media stereotypes, providing learning disabilities equality training, and actively promoting positive relationships between people with and without disabilities. While social capitalists are developing instruments to measure these things, they have no guid- ance to offer on which tools are needed to make these changes, so we must look for advice to inclusion advocates, as well as media studies, community development, health promotion and students of the social psychology of stigma.

Inclusion advocates who wish to build links with community development work- ers may find that social capital is the linking concept that will bring them together.

Any examination of trust and safety quickly moves into a consideration of structural inequalities. Despite this, few inclusion advocates or social capitalists have given much attention to the way in which structural inequalities around race or gender impact upon the lives of people with learning disabilities. Social capital can systematically oppress women (Riddell et al., 2001), people from black and ethnic

Social capital, social inclusion and services 201

minority communities (Campbell & MacLean, 2002), people with disabilities, and, as Putnam notes, terrorist groups are strong on bonding relationships. Campbell (2000) sums all this up as ‘antisocial capital’, although it is likely that many groups have a mixture of benevolent and toxic effects, and few, if any, are unambiguously virtuous or destructive.

Staff will need to respond to these complexities at a number of levels. First, a focus on leisure and voluntary participation in the community will require services to offer support in the evenings and weekends in ordinary community locations away from learning disability premises, and so working arrangements will need to support these activities. Secondly, staff will need to respond imaginatively to bullying, thin trust and structural inequality.

Social connections

Both social inclusion and social capital theorists invite us to think about people with learning disabilities as citizens who are able to make a contribution to the whole community. This clashes with the current reality, where perhaps only a third of the people utilizing learning disability services have even one non-disabled friend (Robertson et al., 2001). Friendships between people with learning disabilities and non-disabled people must overcome some difficulties, especially where there are inequities in communication skills, disposable income and freedom of choice (Zetlin & Murtaugh, 1988), but can be very rewarding for participants (Newton et al., 1995). Indeed, we think that people with learning disabilities may well have the potential to make an above-average contribution to the community.

Inclusion advocates have been eager to support people with learning disabilities to take up positive social roles, such as householder, employee or student. While lip service has been paid to participation as well as presence in the community, social capitalists insist that attention is given to the quality of social relationships in these settings. Simply achieving the status of a student does not build social capital if there are few opportunities for networking and relationship building. Bridging relation- ships with non-disabled students are not enhanced if the student is attending a special class, at a special time and taking lunch in a special, segregated cafeteria. Just as important is the support that is made available, for co-location alone does not guarantee the development of friendships. So, for example, poorly skilled job- coaches may unwittingly detach learning disabled workers from their non-disabled work colleagues in order to provide intensive task training.

There are also particular challenges that arise from taking a focus on informal and unregulated relationships. A learning disabled customer is legally entitled to fair and equal service from the bar staff, but the Disability Discrimination Act 1995 does not govern the behaviour of other drinkers in the public house. This means that a host of awkward, unfriendly or downright hostile responses may be more in evidence in unregulated social relationships—exactly in those areas that are well covered by social capitalists.

A second reason why discrimination may be amplified in unregulated relation- ships revolves around the practical transaction with the bar staff. This is governed by

202 P. Bates & F. A. Davis

clear rules for the encounter (placing an order, pulling the pint, paying for the drink), while the informal connections with other drinkers in the pub are less defined and, consequently, more difficult to negotiate. Similarly, in the workplace, practical tasks may enable people with learning disabilities to demonstrate their abilities at work and so allow social interaction to grow as their competence is recognized, whilst equal opportunities policies constrain potentially negative responses of col- leagues. In contrast, unregulated places that are about talking and little else may provide few opportunities for this kind of broader relationship to emerge and so people who don’t seem to fit in may be more comprehensively ostracized. One person said, ‘I have a job, but no-one wants to go out with me in the evenings’. Social capitalists demand that these challenges are addressed.

An analysis of social capital through the life-course reveals how there are particu- lar rites of passage when capital accrues or is lost. A move into residential care, perhaps on the death of a parent, can wipe out stocks of social capital—especially if it involves relocation into a different neighbourhood (Riddell et al., 2001). Indeed, entry into any care system may burn-off social connections, trust and reciprocity. Staff need to be aware that addressing these issues can be just as important as the selection of appropriate accommodation, medication or counselling.

Citizen power

Both social inclusion and social capital theories offer a familiar challenge in this domain—that of increasing service user participation and advocacy.

Traditional services have been characterized by ‘vertical’ relationships in which staff hold power over service users, while social capitalists and service user advocates seek ‘horizontal’ relationships (Riddell et al., 1999).

There are a number of potential pit falls to watch out for here. As a social capital perspective gains ground, there are the ever-present dangers to be avoided, includ- ing:

• preferring ‘white’ social capital over culturally diverse manifestations of relation- ships, trust and civic participation;

• adding informal community connections to the list of things that it is acceptable to ‘prescribe’ for people using services;

• reproducing traditional power relationships of control and containment within new community locations;

• that individuals who do not engage may be blamed for their situation.

From our experience these problems can come about because both social capital and inclusion theorists risk unduly focusing on ‘slotting in’, rather than transforming society. From this standpoint, society is perceived as fundamentally just and stable, so that learning disability services simply need to locate a menu of vacant slots and help the person to decide what they would like to do, learn the correct behaviour and then engage in the social opportunity of their choice. Bourdieu (1983) challenges this perception by reminding us how the ‘old boy’ networks use social capital to

Social capital, social inclusion and services 203

maintain their power and control, and advises us that this kind of social capital should be dismantled and replaced by more equitable relationships.

Paradoxically and despite the above we suggest that it is also vital to take an optimistic overview of communities. Reviews of supported employment (Riddell et al., 1997) and volunteering (Bates, 2001b) note that expansion of the service is restricted, not by a shortage of ‘hosts’ willing to offer opportunities to people with learning disabilities, but by a shortage of state funding and therefore support staff. By extension we may assume that there will be plenty of informal social settings that would welcome people with learning disabilities, so long as we could arrange adequate support.

A further example of the synergy possible by taking a dual perspective involves advocacy services. These have devoted much time to supporting people with learning disabilities to engage in formal decision-making processes. Service users have learnt how committees work, how records are kept and distributed, as well as the subtler tasks of lobbying and negotiating with senior managers. Meanwhile, social capitalists have observed that, while the general membership of civic and community associations have been falling, there has been an even faster decline in the number of people willing to take office in these associations. In addition, recent urban regeneration and service improvement strategies have emphasized the value of public consultation and involvement, and sought new methods of reaching tradition- ally excluded groups. This means that market expansion and labour shortages in these community and civic associations neatly coincides with a new generation of skilled and experienced people who happen to also have a learning difficulty.

Advocacy groups that have traditionally focused on long-term bonding in order to reform the learning disability service could build bridging relationships with local community organizations and campaigns. Some people with learning disabilities might eventually leave the advocacy group in order to join other advocates for the local community improvements that most interest them as citizens.

While there is general approval for specific social roles, such as that of employee or student, taking an active part in civic, political or informal associations does not earn universal praise. Staff operate within a contemporary society that appears to place great store on garden redesign, for example, but which ridicules train spotting. This might result in staff feeling comfortable about arranging a taxi for the learning disabled person who wants to attend the agricultural college, but the same worker may be less willing to arrange transport to a meeting of the local branch of railway enthusiasts!

Separating out one’s rights as a citizen from one’s rights as an employee or for that matter as a service user, can lead to contradictory allegiances for staff. A person’s interests or eagerness to write to the newspapers about litter may embarrass the day service staff member or spill over into unwelcome publicity for an employer. Despite this, social capitalists demand that we support people with learning disabilities who wish to vote, contribute to public discussions or agitate for social change.

In addition, those who provide formal or informal civic education should be equally interested in the parallel questions, ‘How do I contribute to my community?’ and ‘How can I transform my community?’ Paulo Freire (1972) and other educators

204 P. Bates & F. A. Davis

of the liberation school have shown how the task of transforming society can be attempted through alliances between disabled and non-disabled people; that is, through the development of bridging social capital.

Community perception

In a recent training seminar, one day-centre worker described his own leisure time as occupied entirely with solitary visits to the off-licence and watching TV game shows, and therefore he did not see why isolation was a problem for disabled people. We do not know if staff in learning disability services engage in community life to a greater or lesser extent than the average, but it is likely that the personal attitudes of staff will have a real impact on the lives of service users. This is illustrated by a Department of Health study where inappropriate staff attitudes and behaviour was the most frequently cited barrier to access by disabled people (Disability Matters Limited & NHS Executive, 1999).

This suggests that there is some danger of staff defining service users’ lives by their own personal choice of lifestyle, either by assuming that people with learning disabilities will not be interested in community engagement or by evangelically promoting their own personal interests.

Staff in learning disability services may also favour urban settings, as they appear to offer more venues to people who use services, despite the high transport costs of bringing everyone into a single point. Small, rural communities have fewer events and buildings, but arguably more networks and informal opportunities to connect. When there are more bridging relationships between groups in small communities, positive or negative reputations can also spread quickly, and create or deny a new resident a chance of a fresh start in a new social setting. This means that workers engaged in community relocation should recognize informal networks as sources of social capital and develop strategies in supporting service users to navigate them successfully.

Staff and other allies therefore have a two-fold task: to recognize the unique individuality of the learning disabled person and to similarly recognize the unique attributes of the many available communities to which that person might contribute. Such creative and individualized responses defy simple categorizations and press us to create systems that promote artistry, rather than the regimented production of standardized care packages. Since people with learning disabilities are likely to want and need unique arrangements, there is a danger that the introduction of standard monitoring systems will close down their leisure options to those listed on monitor- ing forms, whilst treating the richness of local human communities as no more than an arrangement of blank, featureless buildings and facilities.

Discussion

Attention to social capital is welcome as long as this emphasis does not eclipse other important goals in the minds of service developers. For example, Wilkinson (1996) asserts that income inequality is a fundamental cause of health inequality and that

Social capital, social inclusion and services 205

social capital plays no more than a mediating role in this relationship, while Putnam (2000) sees social capital as the primary factor. We would argue therefore that working on social capital must not become a cheap alternative to reducing income inequality and must not divert us from the task of developing services that provide for basic human dignity (Morgan, 2001).

As long as many learning disabled people lack a decent home, satisfactory income, good health, meaningful employment, and freedom from discrimination and abuse they are unlikely to view or be viewed as an asset to their neighbourhoods. The complimentary relationship between social inclusion and social capital reminds us that promoting social capital as a human service aim is a legitimate and long-term solution to the isolation and segregation of many devalued groups. However, it is not a panacea and needs bolstering with other approaches.

Social capitalists collect a diverse array of data from whole populations, as illustrated by the range of issues under discussion. As there are a host of comparative indicators already in use with the general population, some of these might also be suitable for collecting aggregate data about people with learning disabilities and comparing findings with the general population in order to discover the size of the ‘inclusion gap’ (Love et al., 2002). However, population-level data is a poor source of guidance for what to offer to named individuals, and so care is needed in interpreting these findings:

Sue lives in a suburb and works long hours in the city. She leaves early each morning and gets home late at night. Almost every weekend she travels to visit friends in other parts of the country. As a result, she does not know her neighbours. Despite her house being often empty, she is safe from burglary as many of her neighbours are unemployed and they maintain a vigorous neighbourhood watch group.

Social inclusion theorists would look at Sue’s connections with her neighbours, while social capitalists look at the whole street and recognize that she benefits from the social capital built up by her neighbours.

At the individual level, those staff who work on developing social capital therefore also need to be skilled in recognizing other factors and have access to the expertise of social inclusion advocates in how to choose, get and keep a home, a job and a social life. Managers should be aware of the tension and difference in priorities that each theoretical position taken on its own could have on resource allocation, and strike an appropriate balance that supports people who use services and simul- taneously invests in the whole community. Service designers need to strike a balance between attempting to develop new ‘social capital or inclusion projects’, and the subtler task of threading the approach through existing services.

Conclusion

If interpreted with care, the concept of social capital provides a helpful additional perspective to learning disability services that are striving to promote social in- clusion. The relationship is reciprocal, however, as inclusion advocates working with learning disabled people have insights and experience that will support the pro-

206 P. Bates & F. A. Davis

motion of social capital for the whole community, as well as service users. Finally, many of the issues that have been highlighted in this article apply equally to many other groups who are at risk of exclusion. There is room for further dialogue.

References

Amado, A.N. (Ed.) (1993) Friendships and community connections between people with and without developmental disabilities (Baltimore, Paul H Brookes).

Bandura, A. (1977) A social learning theory (New Jersey, Prentice Hall). Bates, P. (Ed.) (2002a) Working for inclusion (London, Sainsbury Centre for Mental Health). Bates, P. (2002b) A real asset: a manual for supported volunteering (Manchester: National Develop-

ment Team). Bott, E. (1957) Family and social network (London, Tavistock). Bourdieu, P. (1983) The forms of capital, in: A. H. Halsey, H. Lauder, P. Brown & A. Stuart

Wells (Eds) Education: culture, economy, society (Oxford, Oxford University Press). Campbell, C. (2000) Social capital and health: contextualizing health promotion within local

community networks, in: S. Baron, J. Field & T. Schuller (Eds) Social capital: critical perspectives (Oxford, Oxford University Press).

Campbell, C. & MacLean, C. (2002) Ethnic identities, social capital and health inequalities: factors shaping African-Caribbean participation in local community networks, Social Science and Medicine, 55(4), 643–657.

Campbell, C., Wood, R. & Kelly, M. (1999) Social capital and health (London, Health Education Authority).

Corrigan, P. & Miller, C. (1999) Social capital: the basic building block of social cohesion— management briefing, August 1999 (London, Office for Public Management).

Department of Health (2001a) Making it happen: a guide to delivering mental health promotion, implementation plan for Standard One of the National Service Framework for Mental Health (London, Department of Health).

Department of Health (2001b) Valuing people: a new strategy for learning disability for the 21st century, Department of Health Cmd 5806 (London, DoH).

De Tocqueville, A. (1835) Democracy in America, Volume 1. Available online at: http:// xroads.virginia. edu/ � HYPER/DETOC/toc indx.html (accessed 16 July 2003).

Dewey, J. (1929/1958) Experience and nature (New York, Dover). Disability Matters Limited and NHS Executive (1999) Working in partnership to implement Section

21 of the Disability Discrimination Act 1995 across the NHS. Available online at: www.doh.gov.uk/pub/docs/doh/section21dda.pdf (accessed 16 July 2003).

Etzioni, A. (1996) The new golden rule: community and morality in a democratic society (New York, Basic Books).

Falvey, M., Forest, M., Pearpoint, J. & Rosenberg, R. (1994) All my life’s a circle: using the tools: circles, MAPS and PATH (Toronto, Inclusion Press).

Freire, P. (1972) Pedagogy of the oppressed (Harmondsworth, Penguin). Granovetter, M.S. (1973) The strength of weak ties, American Journal of Sociology, 78, 1360–

1380. Grootaert, C. (2001) Social capital the missing link? in: P. Dekker & E. M. Uslaner (Eds) Social

capital and participation in everyday life (London, Routledge). Habermas, J. (1984) The theory of communicative action: reason and the rationalization of society

(Boston, Beacon Press). Health Development Agency (1999) Social Action Research Project. Available online at: www.had-

online.org.uk/html/resources/websites.html (accessed 16 July 2003).

Social capital, social inclusion and services 207

Love, W., Bates, P. & Whitehead, S. (2002) Day Service Modernization Toolkit Part 1 (Bristol, Valuing People Support Team). Available online at: http://www.valuingpeople.gov.uk/docu- ments/DayService1.pdf (accessed 18 March 2004).

Mansell, J. (Chair) (1993) Services for people with learning disabilities and challenging behaviour or mental health needs (London, Department of Health. HMSO).

MENCAP (1999) Living in fear (London, MENCAP). Mitchell, D. & Harrison, M. (2001) Studying employment initiatives for people with mental

health problems in developing countries: a research agenda, Research and Development in Primary Care, 2, 107.

Morgan, A. (2001) Overview and progress report on the Health Development Agency’s programme of research on social capital and health (London, Health Development Agency).

Newton, J., Olson, D. & Horner, R. (1995) Factors contributing to the stability of social relationships between individuals with mental retardation and other community members, Mental Retardation, 33, 383–393.

O’Brien, J. (1987) A guide to lifestyle planning: using the activities catalog to integrate services and natural support systems, in: B. Wilcox & G. T. Bellamy (Eds) A comprehensive guide to the activities catalog: an alternative curriculum for youth and adults with severe disabilities (Baltimore, Paul H Brookes).

Putnam, R.D. (2000) Bowling alone: the collapse and revival of American community (New York, Simon Schuster).

Reed, Z. & Boyle, D. (2002) Growing strong communities, in: P. Bates (Ed.) Working for inclusion (London, Sainsbury Centre for Mental Health).

Riddell, S., Baron, S., Stalker, K. & Wilkinson, H. (1997) The concept of the learning society for adults with learning disabilities: human and social capital perspectives, Journal of Education Policy, 12(6), 473–483.

Riddell, S., Baron, S. & Wilson, A. (1999) Social capital and people with learning difficulties, Studies in the Education of Adults, 31(1), 49–65.

Riddell, S., Wilson, A. & Baron, S. (2001) Gender, social capital and lifelong learning for people with learning difficulties, International Studies in Sociology of Education, 11(1), 3–23.

Ritchie, P. (2001) The future’s purple, paper given at the SHS conference, Edinburgh 24–25 May. Robertson, J., Emerson, E., Gregory, N., Hatton, C., Kessissoglou, S., Hallam, A. & Linehan, C.

(2001) Social networks of people with intellectual disabilities in residential settings, Mental Retardation, 39, 201–214.

Rusch, F.R. & Hughes, C. (1989) Overview of supported employment, Journal of Applied Behavior Analysis, 22(4), 351–363.

Schuller, T. (2000) Exploiting social capital: learning about learning, inaugural lecture at Birkbeck College, 9 February 2000.

Seyfang, G. (2001) Spending time, building communities: evaluating time banks and mutual volunteering as a tool for tackling social exclusion, Voluntary Action: The Journal of the Institute of Volunteering Research, 4(1), 29–48.

Simons, K. (1998) Home, work and inclusion: the social policy implications of supported living and employment for people with learning disabilities (York, Joseph Rowntree Foundation).

Social Exclusion Unit (1998) Bringing Britain together: a national strategy for neighbourhood renewal, Cmd 4045 (London, Stationery Office).

Wilkinson, R.G. (1996) Unhealthy societies: the afflictions of inequality (London, Routledge). Wolfensberger, W. (1972) Normalization: the principle of normalisation in human services (Toronto,

National Institute on Mental Retardation). Zetlin, A.G. & Murtaugh, M. (1988) Friendship patterns of mildly learning handicapped and

nonhandicapped high school students, American Journal on Mental Retardation, 92, 447– 454.

Leveraging Social Capital of Individuals with Intellectual Disabilities through Participation on Facebook Carmit-Noa Shpigelman

Department of Community Mental Health, University of Haifa, Haifa, Israel

Accepted for publication 23 October 2016

Background Participation in social networking sites has

considerable potential to leverage the individual’s social

capital, including persons with intellectual disabilities,

whose real-world social networks are fairly limited.

Method This study aimed to understand how individuals

with intellectual disabilities use Facebook to access social

capital benefits, if at all. Qualitative interviews and

observations were conducted with 20 adult Facebook

users with intellectual disabilities.

Results The online participation enhanced their bonding

social capital as well as contributed to their psychological

well-being through increasing their online visibility,

popularity and sense of belonging. At the same time, they

experienced stress and frustration due to usage

difficulties, which prevented them from enhancing their

bridging social capital.

Conclusions Participation in social networking sites may

also leverage bridging social capital of persons with

intellectual disabilities, but they need a more accessible

platform and ongoing support to ensure safe and fruitful

participation.

Keywords: disability, Facebook, social capital, social

media, social networking sites, well-being

Introduction

Participation in social networking sites (SNSs) can

leverage the individual’s social capital and contribute to

his/her psychological well-being (Bradley & Poppen

2003; Valkenburg et al. 2006; Steinfield et al. 2008; Mauri

et al. 2011). Potentially, participation in SNSs could have

similar social and emotional benefits for persons with

intellectual disabilities. However, to date, the

phenomenon of participation of persons with intellectual

disabilities in SNSs has received relatively scant attention

in research and practice (McClimens & Gordon 2009;

Shpigelman & Gill 2014b; Davies et al. 2015). Persons

with intellectual disabilities are often subject to public

stigma and feel the absence of peer friendships,

especially in the hours after school or work, and as a

result may experience social and emotional isolation in

the real world (Knox & Hickson 2001; Hamill 2003;

Emerson & McVilly 2004; Jahoda & Markova 2004; Pottie

& Sumarah 2004; Buckley et al. 2005; D’Haem 2008;

Lippold & Burns 2009). Their limited social networks

may restrict their opportunity to build social capital and

a sense of community belonging (Kampert & Goreczny

2007; Clement & Bigby 2009; Shogren 2012). The growing

role of information and communication technologies

(ICT), including SNSs, in shaping access to community

and social life has created an opportunity to leverage

social capital of marginalized groups in society, such as

persons with intellectual disabilities.

Social capital refers to the resources (financial, social

or emotional) that become available to the individual

through one’s social interactions (Putnam 2000; Lin

2001). Social capital is inherent to social networks and is

determined by one’s location within its structures (Burt

2005). The concept of social capital was previously

applied to research on social media (Ellison et al. 2007,

2010; de Z�u~niga et al. 2012). Putnam (2000) discerned

two basic forms of social capital: bonding and bridging.

Bonding social capital describes benefits from close

personal relationships, such as emotional or

instrumental support. Bridging social capital is

comprised of what Granovetter (1973) referred to as

‘weak ties’, that is, the relationship that is formed

among casual acquaintances, people with whom one

communicates on a daily, weekly or monthly basis, for

example, neighbours and service providers, without

Journal of Applied Research in Intellectual Disabilities 2018, 31, e79–e91

Published for the British Institute of Learning Disabilities

forming an intimate bond. Bridging social capital

provides novel information and new perspectives,

which can be exchanged with others in one’s network

(Granovetter 1983).

Previous studies that explored SNS use in the general

population found that participation in SNSs contributed

primarily to bonding social capital, meaning that users

were more likely to communicate with close friends

(Cheung et al. 2011; Nadkarni & Hofmann 2012; Duggan

et al. 2015). Bridging relationships or ‘weak ties’ that can

evolve from or be maintained through SNSs may also

be beneficial for persons with intellectual disabilities

who have limited social networks in the real world

(Verdonschot et al. 2009). Further research is needed not

only to validate these assumptions, but also to capture

the subjective experiences of individuals with

intellectual disabilities who use SNSs to increase their

social capital.

Previous works suggest that marginalized groups that

are isolated, stigmatized or lack real-world support, such

as people with disabilities, might be especially motivated

to participate in and gain from online social interactions

(McKenna & Bargh 1998; Braithwaite et al. 1999; National

Organization on Disability 2000; Mehra et al. 2004; Barak

et al. 2008; Leimeister et al. 2008; Shpigelman et al. 2009,

Shpigelman & Gill 2014a). Nevertheless, only few social

media studies have included individuals with

intellectual disabilities (McClimens & Gordon 2009;

Shpigelman & Gill 2014b; Davies et al. 2015).

Holmes & O’Loughlin (2014), for example, asked

three individuals with learning disabilities to describe

their experiences related to Facebook use. The

participants reported that using Facebook, they were

able to form or maintain social relationships, had

opportunities to share mutual hobbies with others and

received social support. They also reported higher

levels of self-esteem, linked to the number of their

Facebook friends. A recent online quantitative survey

on the usage patterns of persons with intellectual

disabilities who were Facebook users (Shpigelman &

Gill 2014b) found that they used the platform primarily

to connect with family members and real-world friends

and that participation on Facebook contributed to their

psychological well-being. The findings of the above

studies (McClimens & Gordon 2009; Shpigelman & Gill

2014b; Holmes & O’Loughlin 2014) emphasized that for

persons with intellectual disabilities, participation in

online social applications is beneficial mainly in terms

of social capital and well-being. Still, persons with

intellectual disabilities are underrepresented in social

media research.

The recent protest of the community of people with

disabilities against (among other issues) their lack of

representation in the Pew Research Center’s polls on the

use of online applications (NCIL 2011) underscores the

need for studies like the one presented herein. A

plausible explanation for the lack of representation of

people with disabilities in social media research is the

digital divide: persons with disabilities, and especially

with intellectual disabilities, have unequal access to and

experience limited usability of computer technology,

which might affect the prevalence of their participation

in SNSs (Haller 2010; Fox 2011; U.S. Department of

Commerce 2011). However, the tracking data published

by Pew Research Center’s Internet and American Life

Project indicate that following the recent advent of

Internet access via cell phones (smartphones) and other

mobile devices, there has been a dramatic shift in these

patterns among underrepresented groups (Smith 2013,

2015).

The lack of representation of persons with intellectual

disabilities in social media research might also be due to

the assumption that these online environments are not

suitable for persons with intellectual disabilities, given

their difficulty in understanding the associated risks,

which include, for example, divulging confidential

personal information to strangers and friends, and being

exposed to online forms of fraud, bullying and

harassment (Acquisti & Gross 2006; Debatin et al. 2009;

Taraszow et al. 2010; Buijs et al. 2016).

Despite these numerous challenges, the above-

mentioned studies indicated that participation in SNSs

can be valuable for persons with intellectual disabilities.

The complexity of the issue suggests that much research

is still needed. Previous studies in social media that did

include users with intellectual disabilities were limited,

either in terms of the qualitative sample size

(McClimens & Gordon 2009; Holmes & O’Loughlin

2014) or the selected focus (examination of usage

patterns; Shpigelman & Gill 2014b). In contrast, in this

study, the qualitative sample was relatively larger in

terms of qualitative sample size (Creswell 1998), that is,

20 Facebook users with intellectual disabilities were

surveyed and the focus was on capturing the subjective

experiences of individuals with intellectual disabilities

intellectual disabilities. This study examined how

individuals with intellectual disabilities use Facebook to

access social capital benefits, if at all. It should be noted

that although there are various SNSs such as Twitter,

MySpace, Pinterest, LinkedIn and Instagram, this

study’s focus is on Facebook as the most popular SNS

(Duggan 2015).

e80 Journal of Applied Research in Intellectual Disabilities

Method

Participants

Participants in the study had to meet the following

criteria: (i) have an official diagnosis of intellectual

disabilities, meaning that the disability was identified

before they reached the age of 18 years and is

characterized by significant limitations in both

intellectual functioning and adaptive behaviour,

manifested in conceptual, social and practical adaptive

skills (Schalock et al. 2010), (ii) be at least 18 years of age,

(iii) reside in the community and (iv) be active users of

Facebook (at least once a week). Recruitment flyers were

distributed face to face and online by the investigator and

the research assistant to organizations and centres that

provide services for people with intellectual disabilities,

as well as to disability advocacy groups. Then, the

organizations, centres and groups disseminated the flyers

to their clients and members. Recruitment continued until

data collection no longer produced new themes and data

saturation was achieved (Morse 1995). Based on the

concept of saturation, the first round of data collection

included 12 participants and then another eight

participants were added.

The final sample included 20 individuals (10 women

and 10 men), between the ages of 21 and 43 (average age:

30.2 years). Seven of the 20 participants had been

appointed a legal guardian (see Table 1). The diagnosis of

most of the participants (17 of 20) was mild level of

intellectual disabilities and that of three participants was

moderate level of intellectual disabilities. The majority

live in supportive community arrangements (villages) for

people with developmental disabilities. These are

inclusive, kibbutz-like communities that provide housing,

physical care, employment options and leisure activities.

Table 1 Description of the sample (N = 20)

Participant No.

Gender

(F/M) Age Diagnosis Living arrangement Having computer

1 M 23 Intellectual disabilities

+ cerebral palsy

With parents Computer shared with others

2 M 27 Intellectual disabilities Alone (his/her apartment) PC

3 F 21 Intellectual disabilities SCLA PC

4 M 26 Intellectual disabilities With parents PC

5 F 29 Intellectual disabilities SCLA Computer shared with others

+ Internet access via mobile phone

6 F 37 Intellectual disabilities Alone (his/her apartment) PC

7 M 26 Intellectual disabilities

+ Asperger’s disorder

With parents Computer shared with others

8 M 36 Intellectual disabilities Alone (his/her apartment) PC

9 F 28 Intellectual disabilities SCLA PC

10 F 24 Intellectual disabilities SCLA PC

11 F 34 Intellectual disabilities SCLA PC

12 F 32 Intellectual disabilities

+ vision impairment

SCLA Friend’s computer

13 F 34 Intellectual disabilities

+ cerebral palsy

SCLA PC

14 M 41 Intellectual disabilities SCLA PC

15 M 43 Intellectual disabilities SCLA PC

16 M 25 Intellectual disabilities SCLA PC

17 M 27 Intellectual disabilities SCLA PC

18 M 31 Intellectual disabilities

+ cerebral palsy

SCLA PC + Internet access via mobile phone

19 F 28 Intellectual disabilities SCLA Computer shared with others

20 F 39 Intellectual disabilities SCLA Computer shared with others

SCLA, Supportive community living arrangement; PC, Personal computer.

Journal of Applied Research in Intellectual Disabilities e81

The residents can live alone in their apartments or with

other roommates. They manage their social life mainly

inside the village.

Procedure

The study applied a qualitative phenomenological

paradigm to capture the subjective experiences of

Facebook users with intellectual disabilities and the

meanings they attribute to their experiences in terms of

social capital (Sokolowski 2000; Charmaz & McMullen

2011; Denzin & Lincoln 2011). The qualitative

instruments used in both rounds of data collection

included observations and personal interviews. Direct

observations (Patton 2002) were conducted, followed by

exploratory questions to understand the participants’

decisions to engage in specific activities on Facebook,

such as writing a post or uploading a photograph. To

minimize the effect of the observer’s presence, the

observations were conducted in the natural setting,

where the participants felt comfortable to login and use

Facebook. In addition, the observer was sitting next to

the participant but not too close, where she could view

the participant’s online activity. Furthermore, each

participant was observed twice while in the process of

using Facebook, to minimize the effect of the observer’s

presence (especially in the second observation) as well

as to avoid the risk of bias entailed in conducting only

one observation. A 2-week interval was maintained

between the two observations, each of which lasted

approximately thirty minutes (Marshall & Rossman

1989; Erlandson et al. 1993). Following the observations

and based on the observational field notes, an interview

guide was developed to get a deeper understanding of

the observed usage patterns. In-depth interviews of an

hour each included questions about the participants’

experiences, including their perceptions and feelings, as

the following questions exemplify: ‘In general, what do

you think about Facebook?’; ‘What do you feel when

you are on Facebook?’; ‘For what purpose do you use

Facebook?’; ‘What do you do with your Facebook

friends?’; ‘How do you decide which post to respond

to?’; ‘How do you feel when someone ignores your

friendship request?’; ‘Why did you decide to join these

Facebook groups?’

Data analysis

Data were obtained from approximately 260 pages of

interview transcripts and observational field notes,

which reflected participants’ objective experiences

(online behaviours – usage patterns) as well as their subjective experiences (feelings and thoughts). The

interview transcripts and observational field notes were

triangulated and analysed to produce a set of themes in

relation to the participants’ Facebook experiences and

their understanding of online versus offline (face to

face) social relationships. Data were organized into

themes by the investigator (the author) in collaboration

with a research assistant, using an inductive thematic

content analysis procedure (Strauss & Corbin 1990). In

the first phase of the analysis, the investigator divided

the transcripts into meaningful chunks and coded them,

by assigning a brief descriptor. In the second phase of

data analysis, the investigator eliminated redundant

codes and then arranged them into themes, to facilitate

analysis of important thematic interrelationships. In

addition, quantitative content analysis was conducted to

describe the participants’ online behaviour (e.g.

frequency of use and main activities on Facebook).

Trustworthiness – validity and reliability

Lincoln & Guba (1985) proposed to use the terms

trustworthiness or rigour to establish confidence in

qualitative findings, rather than the concepts of validity

and reliability. To minimize bias and enhance

trustworthiness, the collected data were triangulated

through the use of two qualitative instruments – interviews and observations (Lincoln & Guba 1985;

Patton 2002; Niesz et al. 2008). Both the observations

and the interviews were audio-recorded and transcribed

verbatim. The observation and interview memos,

including the participants’ comments and body

language, the settings, and the interviewer’s self-

reflections were also documented and used to enhance

the analytic process. The memos were part of the audit

trail that was examined by a peer researcher, as

described below, to minimize bias and enhance

trustworthiness of the findings (Morrow 2005).

Furthermore, a research assistant audited the

investigator’s analysis, checking the data to determine

relationships between thematic categories. This process

is also known as peer debriefing (Lincoln & Guba 1985).

Conflicting assessments were resolved through

discussions between the investigator and the research

assistant until a consensus was reached.

Ethical considerations

The protocol used for this study was approved by the

Ethical Committee at the author’s university and by the

e82 Journal of Applied Research in Intellectual Disabilities

National Department of Welfare and Social Services.

Persons with intellectual disabilities who volunteered to

participate in the study reviewed and signed an

informed consent form. Participants under a guardian’s

supervision had to provide the guardian’s signature on

the informed consent form as well as their own. Finally,

personal identifiers were eliminated from the results to

ensure anonymity and maintain confidentiality.

Results

The majority of the participants (60%) reported using

Facebook every day, while the rest (40%) reported using

it at least once a week. They all used Facebook

independently, as noted also in the observations. The

participants reported that they used Facebook mainly

for uploading and observing photographs and video

clips (‘My favorite part is looking at photos’) and for

posting brief messages (‘I write posts about what I did

today or how I feel’). A few were accustomed to using

the chat option to schedule a face-to-face meeting or to

contact customer service (‘I use the chat only for short

conversations – “How are you doing?”’). Other

participants reported that they share posts, photographs

or video clips on Facebook (‘This is really

cute, so I wanted other people to see it’) and join

groups with common interests (‘The group members

always post good recommendations for trips’). Only few

reported that they play Facebook games.

The thematic content analysis of the observation field

notes and the interview transcripts revealed five major

themes related to the participants’ subjective experiences

and the meanings they attributed to their experiences in

terms of social capital. The five major themes that

emerged from the analysis were mainly related to issues

of identity and belonging: (i) an opportunity to be like

(non-disabled) others, (ii) becoming a member of the

community, (iii) becoming visible to others, (iv)

increasing one’s popularity and (v) positive vs. negative

feelings.

Theme 1: An opportunity to be like (non-disabled)

others

The participants reported that their main reason for

joining Facebook was because everyone they know (e.g.

family members, friends and service providers) use it

and they wanted to feel ‘like everyone else’: ‘All the

time I kept hearing from everyone around: “Facebook,

Facebook, Facebook”’; ‘Everyone talked about it’; ‘It has

become a trend’. It seemed that they perceived the

participation on Facebook as a positive status they

wanted to adopt. Some of the participants reported that

they joined Facebook based on the suggestion of their

teacher, tutor or friend: ‘My friend told me that he is

going to open a Facebook account so I decided to do the

same’; ‘At the beginning I did not want to join

Facebook, but a girl that I met in a computer class uses

it frequently and she said we could continue to

communicate via Facebook after the course was over.’

Theme 2: Becoming a member of the community

The participants reported that they used Facebook to stay

connected to their real-world friends (current and past

friends) and family members. It seemed that the

availability of the online communication made them feel

part of the community. They described it as follows: ‘We

can stay in touch even if we don’t talk regularly’; ‘I had

an old school-friend who[m] I hadn’t seen for years;

suddenly she sent me a friendship request on Facebook

and we reconnected’; ‘If I have friends from the past, I

can write to them on Facebook.’ One of the participants

was observed checking enthusiastically the likes and

responses he received to his post. When he was asked for

his reaction and feeling, he said: ‘I am happy because I

don’t get to talk with everyone everyday, so on Facebook

they like talking with me.’ Another participant was

observed posting a comment to his Facebook friend’s

photograph – ‘Very cool pic!’ – and then he explained to the observer: ‘There are members of our community who

don’t live here [in the same facility], I don’t see them

often, so we respond to each other’s posts and this way

we stay in touch.’ The participants connected with their

real-world friends mainly through responding to their

posts (rather than opting for one-on-one communication

via the chat feature).

It should be noted that the messages posted by the

participant’s on their own or others’ Facebook timeline

were brief messages and did not include personal

issues, because they had been instructed by their family

members and/or professional caregivers to protect

themselves from the associated risks (being exposed to

virtual forms of fraud, bullying, and harassment). They

described their Facebook activities thus: ‘[I use

Facebook] – not for personal issues, but to schedule a meeting and [to discuss] what things to bring [to a

meeting or a party]’; ‘Secrets and personal issues I

discuss on the phone, not on Facebook.’ Nevertheless,

the immediate and succinct online communication on

Facebook seemed to contribute to the participant’s sense

of belonging to the community.

Journal of Applied Research in Intellectual Disabilities e83

Becoming a member of the community was achieved

also by joining Facebook groups. The participants

reported joining groups with common interests, such as

hobby or fan groups. They perceived their group

membership not only as an opportunity to learn new

things, but also as a way to have more friends and

share new ideas with them: ‘I look for friends in these

groups and send them a friendship request.’ One of the

participants demonstrated in the observation how he

looked for new activities on specific groups and

explained his motivation: ‘This is a group of the

residents in this facility, so we can keep communicating

after retiring to our separate rooms, and the other three

groups are about trips. I can look for routes that would

be accessible to everyone here.’ Another participant,

who is a member of several Facebook groups, reported

the following: ‘This is a group of people who live in my

city and take care of dogs. I get information [through

the group] and attend adoption events. I also share this

information, so others will come and adopt a dog.’

Theme 3: Becoming visible to others

The participants emphasized their desire to be visible

on this online platform. They became visible through by

reacting to others by taking a passive role, such as using

the Like function, or by taking an active role, such as

posting (visual materials and brief messages) or sharing

information: ‘I can’t meet everyone [face-to-face], so I

want to tell them what I do. I want them to know that I

am [an active person]’; ‘When I share something, all my

friends can see it and that’s good’; ‘Like is like [saying]

‘I saw and heard what you have said. ’’This was also

observed in their Facebook use. For example, one of the

participants logged in to Facebook and the first thing

she did was like the new posts, mainly photographs

uploaded by her friend. When she was asked to explain

her action, she said: ‘I always do like to others and I like

that others do like to me. It is like encouragement. Only

if a photo is really unique will I write something,

because it is hard for me to write.’ Their visibility on

Facebook made them feel present as well as be

perceived as present in the online environment.

Theme 4: Increasing popularity

The participants’ sense of presence, achieved by their

visibility – as indicated above, made them feel popular. For example, a participant who was observed liking

photographs and greetings posted by his friends about a

soccer group, explained why he reacted: ‘It is important

that they see I am involved, I respond. I am the deputy

chairman of the fans; it’s an important role. They should

know that I care about them.’ Participants also felt that

the more Facebook friends they had – the better, as they saw it as a sign of their increased popularity. They

described it as follows: ‘On Facebook you should have

as many friends as you can’; ‘You need many friends in

order to get many [responses]’; ‘I feel good when I have

a lot of [Facebook] friends’; ‘When I see that I have

many friends, it makes me feel happy.’ The majority

accepted friendship requests only from people whom

they had met face to face, thus following the explicit

instructions conveyed primarily by their family

members. Only a few accepted every friendship request

received. For example, one participant showed the

observer that he has more than 400 Facebook friends

and said the following: ‘I am happy [having many

friends]. I accept everyone so I have many friends, even

if I don’t know them. I don’t care that they see my

posts, I have nothing to hide.’ It should be noted that

although the participants wanted many friends, they

did distinguish between Facebook friends and real-

world friends: ‘These [real-world friends] are people

you meet. You really talk to them and you can go

together to different places. On Facebook, the friends

are not real.’

Theme 5: Positive vs. negative feelings

The online visibility and popularity of the participants,

as described above, seemed to contribute to their

general psychological well-being. They reported having

positive feelings following Facebook use, such as mood

elevation, happiness, laughter and pleasure: ‘I am

happy when I watch or upload beautiful photos’; ‘When

I have a bad day, people send me funny things or a

hug’; ‘People write positive posts and it makes me feel

better’; ‘I feel good when people like [my songs].’

During one of the observations, a participant received

over 40 happy birthday wishes in her Facebook timeline.

She smiled and replied to each person who greeted her;

she posted ‘thanks’, ‘what a lovely card’ or ‘you made

me happy.’ Others said also that using Facebook, they

feel calm: ‘It’s a good way to spend time, to relax’;

‘Sometimes I have a hard time falling asleep and then I

go on Facebook and check what other people have

posted.’

On the other hand, they also noted experiencing some

technical and conceptual difficulties pertaining to the

various communication options, which limited their full

participation on Facebook and made them feel stressed

e84 Journal of Applied Research in Intellectual Disabilities

and frustrated. Initially, they had experienced difficulty

setting up the account, because of the many questions

they had to answer. They also avoided using functions

that required text typing, such as the chat function: ‘To

use [chat], you need to type fast; it’s stressful, because

the other person is waiting for a response’; ‘This [chat]

is difficult for me. You have to write fast, so the other

person doesn’t have to wait a long time, and I write

slowly. I don’t want to write a lot; I talk on the phone.’

They also encountered difficulty reading texts posted on

Facebook: ‘I don’t like it when people write long posts.

If I don’t have the energy, I just don’t read them.’ The

literacy difficulty was also demonstrated in the

observations, when the participants preferred to review

visual posts, such as photographs or video clips, rather

than to read or write posts.

Some of the participants reported having difficulty

adjusting to the frequent design changes in Facebook:

‘Now the Facebook [menu] is on the left side; suddenly

it was changed. This is not convenient for me’; ‘I don’t

get why the design was changed. Instead of Hebrew,

it’s in English! Why did they change it? Until now it was OK.’ Others reported the lack of technical usage

skills: ‘I want to delete them [Facebook friends], but I

don’t know how’; ‘I haven’t learned how to upload

video clips or music’; ‘I don’t know what to do so

people won’t send me messages, stupid stuff,

advertisements’; ‘The sound of the Facebook alerts that I

get on my cell phone is annoying.’

In addition to inaccessibility related to lack of technical

know-how, some of the participants expressed difficulty

in understanding the Facebook language. Although they

used specific functions, such as timeline, tag or share, it

seemed that they did not understand the meanings of

these common terms, or the online actions associated

with these terms. This was evident mainly through the

observations: ‘I write that this is mine [tag]’; ‘I didn’t

know it is called a group’; ‘I don’t know what personal

settings means.’ These conceptual barriers led them to

experience negative feelings following their Facebook

use. For example, they tended to be offended by others’

rejection or disregard of their friendship request: ‘I am

offended when people don’t respond to my posts’; ‘I was

offended when they didn’t want to friend me’; ‘When

people don’t respond, it’s frustrating. . . It’s like you are

talking to someone and he ignores you.’

Discussion

The present study aimed to describe the subjective

experiences of Facebook users with intellectual

disabilities and to understand the meanings they

attribute to these experiences in terms of social capital.

In general, it was found that the majority of the

participants use Facebook in the same ways as the

general population does, that is at least once a day

(Duggan et al. 2015). However, as opposed to the

general population, and especially youth (Hampton

et al. 2012), it seems that the participants in the present

study give more than they receive in their interactions

with their Facebook friends. They mainly watched and

liked photographs or video clips uploaded by their

Facebook friends. The vision-based functions, such as

reviewing photographs and video clips or playing

games, are more accessible to users with intellectual

disabilities because these functions depend less on

cognitive and literacy skills than do the verbal-based

functions, such as writing and reading posts or replying

to others (Abbott 2006; Morgan 2008; Wohn & Lee 2013;

Shpigelman & Gill 2014b).

Although the preference of the participants in the

present study was to look at photographs or watch video

clips, they also engaged in the more active function of

posting, yet they clearly emphasized that they wrote only

brief posts and kept their responses to others’ posts short

(due to the limited cognitive and literacy skills). In

contrast to previous studies (Hampton et al. 2012;

Shpigelman & Gill 2014b), the participants in the present

study used Facebook not only passively, as consumers,

but also actively, as contributors. It seems participants

were well aware of this difference, as they noted that

actively posting on Facebook was what enabled them to

gain visibility. As indicated in the literature related to

general (non-disabled) users (Egebark & Ekstr€om 2011;

Hampton et al. 2012), visibility is also very important for

persons with intellectual disabilities, who experience

greater social and emotional isolation compared to the

general population (Jahoda & Markova 2004; Pottie &

Sumarah 2004; Lippold & Burns 2009). It seems that the

online visibility helped them to enhance their social

capital, mainly among their bonding relationships

(Putnam 2000).

Furthermore, when the participants’ Facebook friends

reacted using active functions such as liking or replying

to their posts, they gained a sense of social presence,

which compensates for the lack of shared physical

space. In the framework of social presence theory (Short

et al. 1976), social presence refers to the feeling of being

together, experiencing social interactions with a virtual

or remotely located communication partner. Thus, a

sense of social presence is an essential means to

experience direct, positive and personal human contact

Journal of Applied Research in Intellectual Disabilities e85

(Lombard & Ditton 1997), which in turn can lead to

enhanced social capital. However, to make online

environments cognitively accessible for persons with

intellectual disabilities, abstract terms, such as social

presence, should be conveyed through concrete

language, that is images or emoticons (L€ofgren-

M�artenson 2008; Mervis 2009).

To recap, participants in the present study achieved

visibility through the use of the Like function and by

actively posting on Facebook. Seeing that these postings

garnered responses gave them a sense of social

presence, which made them feel that they were popular

among their Facebook friends. It seems that the

participants strived to become popular online in order

to leverage their social capital (having more friends) and

not as a narcissistic action which is the typical

motivation in the case of non-disabled users (Ong et al.

2011). The participants’ online visibility and popularity

created a sense of belonging and contributed to their

sense of community. This finding supports previous

studies in indicating that participation in SNSs can

increase the individual’s sense of belonging (Effing et al.

2011; Hampton et al. 2011; Strayhorn 2012).

The concept of sense of belonging emphasizes one’s

basic need to feel valued by or important to others and to

feel that one fits in with others in the social environment

(Hagerty et al. 1992). A sense of belonging is an

important element in developing and managing the

individual’s relationship with others. It also has an

impact on the individual’s mental and physical health

(Ross 2002; Hale et al. 2005). Cummins & Lau (2003)

found that a sense of connectedness had a more beneficial

effect on people with intellectual disabilities than did

being physically integrated into the general community.

In the present study, it seems that the participants’ sense

of belonging facilitated their sustained online

participation (Pooley et al. 2005; Zhao et al. 2012), which

in turn led to enhanced social capital. This finding

supports previous studies that demonstrated an

association between online sense of belonging and social

capital among non-disabled users (Hampton et al. 2011;

Kim 2011; Muscanell & Guadagno 2012).

The participants gained a sense of belonging also by

joining Facebook Groups. Facebook Groups is a module

that is useful for generating discussions and sharing

information (Pi et al. 2013). However, that was not the

main gain perceived by the study participants (users

with intellectual disabilities): although they ostensibly

used it to obtain information related to their hobbies,

unlike non-disabled users, they were mostly interested

in making more online friends.

On the whole, the cumulative effect of online social

participation seemed to contribute to the participants’

social capital and increased their psychological well-

being. The current findings are also in line with those of

studies that reported a positive relationship between

participation in SNSs and psychological well-being

(Valkenburg et al. 2006; Ellison et al. 2007; Mauri et al.

2011; Hampton et al. 2012; Nadkarni & Hofmann 2012;

Indian & Grieve 2014). Furthermore, interacting on

Facebook contributed to the participants’ psychological

well-being, as it provided them with an opportunity to

experience a normal identity. As opposed to non-

disabled users, who report construction of various

identities in online settings such as SNSs or dating

websites (Suler 2002; Yurchisin et al. 2005; Zhao et al.

2008), it seems that the participants in the present study

(individuals with intellectual disabilities) did not

produce new identities online. However, the

participation on Facebook provided them an equal

opportunity environment, in which their disability is

less visible (Barak & Sadovsky 2008), thus minimizing

any disability-related stigma and enabling them to feel

‘like everyone else’. It seems that they held the

traditional concept of normalization (Solvang 2000;

Davis 2013), meaning that through their online

participation, they felt they were able to fulfil their

desire to be integrated into society and to be treated as

normal (Deatrick et al. 1999; Caton & Chapman 2016).

The findings of the present study emphasize that the

‘flattening effect’ of social media applications, that is,

the blending and melding together of different social

circles in the online environment (Lewis & West 2009),

may help persons with intellectual disabilities leverage

their social capital, thus creating a beneficial effect and

promoting their sense of well-being.

The number of Facebook friends, or at the very least,

striving for a high number of friends, may have served

as another measure of social ‘normality’ for the

participants. All of the participants associated the ability

to achieve online visibility and popularity with the

accumulation of Facebook friends. In other words, they

attributed the principle of ‘the more the better’ to

Facebook friendships, which is a common perception

among Facebook users (Kim & Lee 2011; Nabi et al.

2013). Nevertheless, the majority did not blindly follow

the principle of ‘the more the better’ and refrained from

extending friend requests to or accepting them from

people whose acquaintances they had made solely

online. Much like other non-disabled users (Ellison et al.

2007; Nadkarni & Hofmann 2012; Duggan et al. 2015)

and disabled users (Shpigelman & Gill 2014b; Holmes &

e86 Journal of Applied Research in Intellectual Disabilities

O’Loughlin 2014), the participants in the present study

used Facebook mainly to communicate with their offline

(real-world) friends, that is, family members, friends

and service providers, with whom they had already met

face to face (bonding relationships). Although some of

them did communicate with their ‘weak ties’

(Granovetter 1973, 1983), and others joined Facebook

groups, which provided them with an opportunity to

increase their bridging relationships (Putnam 2000), it

seems that the majority did not reap the full benefit of

Facebook’s potential promise. In other words, they did

not succeed in leveraging their social capital to the

extent that they had hoped. A plausible explanation for

this finding is the explicit message they received from

their family members and professional caregivers and

which most of them took care to follow, namely, to

avoid corresponding with people whom they had never

met face to face. The fact that the majority of

participants followed these safety instructions and

indeed learned to use Facebook relatively safely is

worth noting, as it contradicts the common perception

that participation in SNSs may be risky for persons with

intellectual disabilities (Acquisti & Gross 2006; Debatin

et al. 2009; Taraszow et al. 2010). Furthermore, despite

the fact that their expectations were not fully met and

despite the imposed limitation of adhering to the safety

guidelines provided, users with intellectual disabilities

still managed to derive pleasure and social leverage

(related to increased visibility, social presence and a

sense of belonging) from their use of Facebook.

Another plausible explanation for the above finding

(i.e. the majority of participants did not use Facebook to

expand their social circles) is the platform’s reliance on

literacy skills which was a source of difficulty for users

with intellectual disabilities. Also the interface design on

Facebook was mentioned by participants as an obstacle,

as was reported in previous studies (Haller 2010;

Shpigelman & Gill 2014b). Some participants noted the

absence of an ongoing support system. As noted in

previous studies (Townsley 1998; Tuffrey-Wijne &

McEnhill 2008; Moloney 2012; Shpigelman & Gill 2014b),

linguistic simplification could help users with intellectual

disabilities to understand a feature or the programme and

the meaning of terms used. It could also enable them to

leverage their social capital while using Facebook safely.

Recently, major technology companies (e.g. Facebook,

Dropbox, Adobe, Yahoo and Microsoft) have initiated an

accessibility task force titled ‘Teaching Accessibility’,

which aims to make their products more accessible to

people with various disabilities (Davies et al. 2015;

Diament 2015).

To recap, the present study has shown that

participation in social media is valuable for persons

with intellectual disabilities. This activity can contribute

to their visibility and social presence, making them feel

popular among their offline friends and, in this

manner, it promotes their sense of belonging to the

community, increases their sense of well-being, and

enhances their bonding social capital. Participation in

SNSs by persons with intellectual disabilities has also

the potential to leverage their bridging social capital,

but they need an even-more accessible platform and

ongoing support.

The study has implications for both practice and

research. Practitioners can use SNSs to assist persons

with intellectual disabilities to leverage their social

capital, for instance, by creating groups that connect

various organizations or centres. People with intellectual

disabilities or with other disabilities, more specifically,

residents and employees who are affiliated with a single

organization or centre but physically belong to separate

facilities can find in Facebook an opportunity to make

new online friends, with whom they can communicate

safely. In addition, practitioners should define for their

clients with intellectual disabilities an explicit policy

regarding Facebook use and devise ways to make the

online environment accessible for their needs, while still

protecting their privacy and security.

The present study had several limitations that should

be addressed in future research. First, the majority of

participants were diagnosed in the upper range of the

intellectual disabilities spectrum and they were

relatively tech-savvy consumers. Future research should

attempt to survey a more representative sample of

people with intellectual disabilities, including those who

do not use Facebook or who use it less frequently, in

order to compare their experiences with those of SNS

users with intellectual disabilities, and to learn how to

adjust the online social environment to suit the needs of

current non-users. Second, the sample included 20

participants, as is common in qualitative research.

Future research should reach out to a larger cohort and

attempt to integrate quantitative instruments to measure

the impact of the online participation in terms of social

capital and well-being. In addition, it would be helpful

to hear the perspectives of family members and

professional caregivers about the participation of

persons with intellectual disabilities in SNSs. In general,

the findings of this study indicate that participation in

SNSs is doable and can have beneficial effects for

persons with intellectual disabilities; these benefits

should be further explored.

Journal of Applied Research in Intellectual Disabilities e87

Acknowledgments

I am very grateful to the individuals who volunteered

and participated in this study.

Source of funding

This study was supported by the Israeli Shalem Fund

for development of services for people with intellectual

disabilities in the local councils (108/2015).

Conflict of interest

No conflict of interest has been declared.

Correspondence

Any correspondence should be directed to Carmit-Noa

Shpigelman, Department of Community Mental Health,

University of Haifa, 199 Aba-Khoushy Ave, Mount

Carmel, Haifa 3498838, Israel (e-mail: carmits@

univ.haifa.ac.il).

References

Abbott S. (2006) The barriers to social inclusion as perceived by

people with intellectual disabilities. Journal of Intellectual

Disabilities 10, 275–287.

Acquisti A. & Gross R. (2006) Imagined communities:

awareness, information sharing, and privacy on the

Facebook. Proceedings of the 6th Workshop on Privacy Enhancing

Technologies. Cambridge, UK.

Barak A. & Sadovsky Y. (2008) Internet use and personal

empowerment of hearing-impaired adolescents. Computers in

Human Behavior 24, 1802–1815.

Barak A., Hen L., Boniel-Nissim M. & Shapira N. (2008) A

comprehensive review and a meta-analysis of the effectiveness

of Internet-based psychotherapeutic interventions. Journal of

Technology in Human Services 26, 109–160.

Bradley N. & Poppen W. (2003) Assistive technology,

computers and internet may decrease sense of isolation for

homebound elderly and disabled persons. Technology and

Disability 15, 19–25.

Braithwaite D. O., Waldron V. R. & Finn J. (1999)

Communication of social support in computer-mediated

groups for people with disabilities. Health Communication 11,

123–151.

Buckley S., Bird G., Sacks B. & Archer T. (2005) A comparison

of mainstream and special education for teenagers with

Down syndrome: implications for parents and teachers. Down

Syndrome News and Update 2, 46–54.

Buijs P. C. M., Boot E., Shugar A., Fung W. L. A. & Bassett A.

S. (2016) Internet safety issues for adolescents and adults

with intellectual disabilities. Journal of Applied Research in

Intellectual Disabilities. doi:10.1111/jar.12250

Burt R. S. (2005) Brokerage and Closure: An Introduction to Social

Capital. Oxford University Press, Oxford.

Caton S. & Chapman M. (2016) The use of social media and

people with intellectual disability: a systematic review and

thematic analysis. Journal of Intellectual and Developmental

Disability 41, 125–139.

Charmaz K. & McMullen L. M. (2011) Five ways of Doing

Qualitative Analysis: Phenomenological Psychology, Grounded

Theory, Discourse Analysis, Narrative Research, and Intuitive

Inquiry. Guilford Press, New York, USA.

Cheung C. M. K., Chiu P.-Y. & Lee M. K. O. (2011) Online

social networks: why do students use facebook? Computers in

Human Behavior 27, 1337–1343.

Clement T. & Bigby C. (2009) Breaking out of a distinct social

space: reflections on supporting community participation for

people with severe and profound intellectual disability. Journal

of Applied Research in Intellectual Disabilities 22, 264–275.

Creswell J. (1998) Qualitative Inquiry and Research Design:

Choosing Among Five Traditions. Sage, Thousand Oaks, CA.

Cummins R. A. & Lau A. L. D. (2003) Community integration

or community exposure? A review and discussion in relation

to people with an intellectual disability. Journal of Applied

Research in Intellectual Disabilities 16, 145–157.

Davies D. K., Stock S. E., King L. R., Brown R. B., Wehmeyer

M. L. & Shogren K. A. (2015) An Interface to support

independent use of Facebook by people with intellectual

disability. Intellectual and Developmental Disabilities 53, 30–41.

Davis L. J. (2013) Introduction: disability, normality, and

power. In: The Disability Studies Reader, 4th edn (ed. L. J.

Davis) pp. 1–16. Routledge, New York and London.

Deatrick J. A., Knafi K. A. & Murphy-Moore C. (1999)

Clarifying the concept of normalization. Journal of Nursing

Scholarship 31, 209–214.

Debatin B., Lovejoy J. P., Horn A.-K. & Hughes B. N. (2009)

Facebook and online privacy: attitudes, behaviors, and

unintended consequences. Journal of Computer-Mediated

Communication 15, 83–108.

Denzin N. K. & Lincoln Y. S. (2011) The SAGE Handbook of

Qualitative Research, 4th edn. Sage, Thousand Oaks.

D’Haem H. (2008) Special at school but lonely at home: an

alternative friendship group for adolescents with Down

Syndrome. Down Syndrome Research and Practice 12, 107–111.

Diament M.. (2015) Tech Giants Team up to Boost Accessibility.

Available at: http://www.disabilityscoop.com/2015/07/23/

tech-team-boost-accessibility/20495/ (accessed on 17 January

2016)

Duggan M. (2015). Mobile Messaging and Social Media 2015. The

Pew Research Center’s Internet & American Life Project.

Available at: http://www.pewinternet.org/2015/08/19/mob

ile-messaging-and-social-media-2015/ (accessed on 21 December

2015)

Duggan M., Ellison N. B., Lample C., Lenhart A. & Madden M.

(2015) Social Media Update 2014. The Pew Research Center’s

e88 Journal of Applied Research in Intellectual Disabilities

http://dx.doi.org/10.1111/jar.12250

http://www.disabilityscoop.com/2015/07/23/tech-team-boost-accessibility/20495/

http://www.pewinternet.org/2015/08/19/mobile-messaging-and-social-media-2015/

Internet & American Life Project. Available at: http://www.pe

winternet.org/2015/01/09/social-media-update-2014/ (accessed

on 17 January 2016)

Effing R., van Hillegersberg J. & Huibers T. (2011) Social media

and political participation: are Facebook, Twitter and

YouTube democratizing our political systems? International

Federation for Information Processing, LNCS 6847, 25–35.

Egebark J. & Ekstr€om M. (2011) Like what you like or like what

others like? Conformity and peer effects on Facebook. IFN

Working Paper, No. 886.

Ellison N. B., Steinfield C. & Lampe C. (2007) The benefits of

Facebook “friends”: social capital and college students’ use of

online social network sites. Journal of Computer-Mediated

Communication 12, 1143–1168.

Ellison N. B., Steinfield C. & Lampe C. (2010) Connection

strategies: social capital implications of Facebook-enabled

communication practices. New Media & Society 13, 873–892.

Emerson E. & McVilly K. (2004) Friendship activities of adults

with intellectual disabilities in supported accommodation in

Northern England. Journal of Applied Research in Intellectual

Disabilities 17, 191–197.

Erlandson D. A., Harris E. L., Skipper B. L. & Allen S. T. (1993)

Doing Naturalistic Inquiry: A Guide to Methods. Sage, Newbury

Park, CA.

Fox S. (2011) Americans Living with Disability and Their

Technology Profile. The Pew Research Center’s Internet &

American Life Project. Available at: http://www.pewinterne

t.org/2011/01/21/americans-living-with-disability-and-their-tec

hnology-profile/

Granovetter M. S. (1973) The strength of weak ties. The

American Journal of Sociology 78, 1360–1380.

Granovetter M. S. (1983) The strength of weak ties: a network

theory revisited. Sociological Theory 1, 201–233.

Hagerty B. M., Lynch-Sauer J., Patusky K. L. & Collier P. (1992)

Sense of belonging: a vital mental health concept. Archives of

Psychiatric Nursing 6, 172–177.

Hale C. J., Hannum J. W. & Espelage D. L. (2005) Social

support and physical health: the importance of belonging.

Journal of American College Health 53, 276–284.

Haller B. A. (2010) Representing Disability in An Ableist World:

Essays on Mass Media. The Advocado Press, Louisville, KY.

Hamill L. B. (2003) Going to college: the experiences of a

young woman with Down Syndrome. Mental Retardation 41,

340–353.

Hampton K. N., Goulet L. S., Rainie L. & Purcell K. (2011)

Social Networking Sites and Our Lives: How People’s Trust,

Personal Relationships, and Civic and Political Involvement are

Connected to Their Use of Social Networking Sites and Other

Technologies. The Pew Research Center’s Internet & American Life

Project. Available at: http://www.pewinternet.org/Reports/

2011/Technology-and-social-networks.aspx (accessed on 15

March 2012)

Hampton K. N., Goulet L. S., Marlow C. & Rainie L. (2012).

Why Most Facebook Users Get More Than They Give. The Pew

Research Center’s Internet & American Life Project. Available at:

http://www.pewinternet.org/2012/02/03/why-most-facebook-

users-get-more-than-they-give (accessed on 15 March 2014)

Holmes K. M. & O’Loughlin N. (2014) The experiences of

people with learning disabilities on social networking sites.

British Journal of Learning Disabilities 42, 3–7.

Indian M. & Grieve R. (2014) When Facebook is easier than

face-to-face: social support derived from Facebook in socially

anxious individual. Personality and Individual Differences 59,

102–106.

Jahoda A. & Markova I. (2004) Coping with social stigma:

people with intellectual disabilities moving from institutions

and family home. Journal of Intellectual Disability Research 48,

719–729.

Kampert A. L. & Goreczny A. J. (2007) Community involvement

and socialization among individuals with mental retardation.

Research in Developmental Disabilities 28, 278–286.

Kim B. (2011) Understanding antecedents of continuance

intention in social-networking services. Cyberpsychology,

Behavior, and Social Networking 14, 199–205.

Kim J. & Lee J.-E. (2011) The Facebook paths to happiness:

effects of the number of Facebook friends and self-

presentation on subjective well-being. CyberPsychology,

Behavior, and Social Networking 14, 359–364.

Knox M. & Hickson F. (2001) The meaning of close friendship:

the views of four people with intellectual disabilities. Journal

of Applied Research in Intellectual Disabilities 14, 276–291.

Leimeister J. M., Schweizer K., Leimeister S. & Helmut K.

(2008) Do virtual communities matter for the social support

of patients? Antecedents and effects of virtual relationships

in online communities. Information Technology and People 21,

350–374.

Lewis J. & West A. (2009) “Friending”: a London-based

undergraduates’ experience of Facebook. New Media & Society

11, 1209–1229.

Lin N. (2001) Building a network theory of social capital. In:

Social Capital: Theory and Research (eds N. Lin, K. S. Cook &

R. S. Burt) pp. 3–29. Aldine de Gruyter, New York.

Lincoln Y. S. & Guba E. G. (1985) Naturalistic Inquiry. Sage,

Beverly Hills, California.

Lippold T. & Burns J. (2009) Social support and intellectual

disabilities: a comparison between social networks of adults

with intellectual disability and those with physical disability.

Journal of Intellectual Disability Research 53, 463–473.

L€ofgren-M�artenson F. (2008) Love in cyberspace: Swedish

young people with intellectual disabilities and the Internet.

Scandinavian Journal of Disability Research 10, 125–138.

Lombard M. & Ditton T. (1997) At the heart of it all: the concept

of presence. Journal of Computer-Mediated Communication 3.

doi:10.1111/j.1083-6101.1997.tb00072.x

Marshall C. & Rossman G. B. (1989) Designing Qualitative

Research. Sage, Newbury Park, CA.

Mauri M., Cipresso P., Balgera A., Villamira M. & Riva G.

(2011) Why is Facebook so successful? Psychophysiological

measures describe a core flow state while using Facebook.

Cyberpsychology, Behavior, and Social Networking 14, 723–731.

Journal of Applied Research in Intellectual Disabilities e89

http://www.pewinternet.org/2015/01/09/social-media-update-2014/

http://www.pewinternet.org/2011/01/21/americans-living-with-disability-and-their-technology-profile/

http://www.pewinternet.org/Reports/2011/Technology-and-social-networks.aspx

http://www.pewinternet.org/2012/02/03/why-most-facebook-users-get-more-than-they-give

http://dx.doi.org/10.1111/j.1083-6101.1997.tb00072.x

McClimens A. & Gordon F. (2009) People with intellectual

disabilities as bloggers: what’s social capital got to do with it

anyway? Journal of Intellectual Disabilities 13, 19–30.

McKenna K. & Bargh J. A. (1998) Coming out in the age of the

Internet: identity “demarginalization” through virtual group

participation. Journal of Personality and Social Psychology 75,

681–694.

Mehra B., Merkel C. & Peterson Bishop A. (2004) The internet

for empowerment of minority and marginalized users. New

Media & Society 6, 781–802.

Mervis C. B. (2009) Language and literacy development of

children with Williams Syndrome. Topics in Language

Disorders 29, 149–169.

Moloney M. (2012) Accessible Information: Advocating the Use

of Technology for Individuals with Intellectual Disability on

Their Path to Individualized Services. Master’s thesis, Dublin

Institute of Technology, Ireland.

Morgan M. (2008) Literacy: meeting the challenge of limited

literacy resources for adolescents and adults with

intellectual disabilities. British Journal of Special Education 35,

92–101.

Morrow S. L. (2005) Quality and trustworthiness in qualitative

research in counseling psychology. Journal of Counseling

Psychology 52, 250–260.

Morse J. M. (1995) The significance of saturation. Qualitative

Health Research 5, 147–149.

Muscanell N. L. & Guadagno R. E. (2012) Make new friends or

keep the old: gender and personality differences in social

networking use. Computers in Human Behavior 28, 107–112.

Nabi R. L., Perstin A. & So J. (2013) Facebook friends with

(health) benefits? Exploring social network site use and

perceptions of social support, stress, and well-being.

Cyberpsychology, Behavior, and Social Networking 16, 721–727.

Nadkarni A. & Hofmann S. G. (2012) Why do people use

Facebook? Personality and Individual Differences 52, 243–249.

National Organization on Disability (2000) NOD-Harris Surveys

of Americans with Disabilities and Community Participation. New

York: Harris Interactive. Available at: http://nod.org/asse

ts/downloads/2000-executive-summary.pdf (accessed on 03

March 2014)

NCIL (National Council on Independent Living) (2011) Pew

Research Center Refuses to Include Disability Statistics in Polls.

Available at: http://www.prnewswire.com/news-releases/pe

ople-with-disabilities-protest-no-representation-by-pew-researc

h-center-121554593.html (accessed on 23 June 2013)

Niesz T., Koch L. & Rumrill P. D. (2008) The empowerment of

people with disabilities through qualitative research. Work 31,

113–125.

Ong E. Y. L., Ang R. P., Ho J. C. M., Lim J. C. Y., Goh D. H.,

Lee C. S. & Chua A. Y. K. (2011) Narcissism, extraversion

and adolescents’ self-presentation on Facebook. Personality

and Individual Differences 50, 180–185.

Patton M. Q. (2002) Qualitative Research and Evaluation Methods,

3rd edn. Sage Publications, Thousand Oaks, CA.

Pi S.-M., Chou C.-H. & Liao H.-L. (2013) A study of Facebook

Groups members’ knowledge sharing. Computers in Human

Behavior 29, 1971–1979.

Pooley J. A., Cohen L. & Pike L. T. (2005) Can sense of

community inform social capital? The Social Science Journal 42,

71–79.

Pottie C. & Sumarah J. (2004) Friendships between persons

with and without developmental disabilities. Mental

Retardation 42, 55–66.

Putnam R. D. (2000) Bowling Alone: The Collapse and Revival of

American Community. Simon and Schuster, New York.

Ross N. (2002) Community belonging and health. Health Reports

13, 33–39.

Schalock R. L., Borthwick-Duffy S. A., Bradley V. J., Buntinx W.

H. E., Coulter D. L., Craig E. M. P., Gomez S. C., Lachapelle

Y., Luckasson R., Reeve A., Shogren K. A., Snell M. E., Spreat

S., Tassé M. J., Thompson J. R., Verdugo-Alonso M. A.,

Wehmeyer M. L. & Yeager M. H. (2010) Intellectual Disability:

Definition, Classification, and Systems of Supports, 11th edn.

American Association on Intellectual and Developmental

Disabilities, USA.

Shogren K. A. (2012) Hispanic mothers’ perceptions of self-

determination. Research and Practice for Persons with Severe

Disabilities 37, 170–184.

Short J., Williams E. & Christie B. (1976) The Social Psychology of

Telecommunications. John Wiley & Sons, London.

Shpigelman C. N., Weiss P. L. & Reiter S. (2009) E-mentoring

for all. Computers in Human Behavior 25(4), 919–928.

Shpigelman C. N. & Gill C. J. (2014a) Facebook use by persons

with disabilities. Journal of Computer-Mediated Communication

19, 610–624.

Shpigelman C. N. & Gill C. J. (2014b) How adults with

intellectual disabilities use Facebook? Disability & Society 29

(10), 1601–1616.

Smith A. (2013) Smartphone Ownership — 2013 Update. The Pew

Research Center’s Internet & American Life Project. Available at:

http://www.pewinternet.org/2013/06/05/smartphone-owne

rship-2013/ (accessed on 07 January 2014)

Smith A. (2015) U.S. Smartphone Use in 2015. The Pew Research

Center’s Internet & American Life Project. Available at: http://

www.pewinternet.org/2015/04/01/us-smartphone-use-in-

2015/ (accessed on 07 February 2016)

Sokolowski R. (2000) Introduction to Phenomenology. Cambridge

University Press, Cambridge, UK.

Solvang P. (2000) The emergence of an us and them discourse

in disability theory. Scandinavian Journal of Disability Research

2, 3–20.

Steinfield C., Ellison N. B. & Lampe C. (2008) Social capital,

self-esteem, and use of online social network sites: a

longitudinal analysis. Journal of Applied Developmental

Psychology 29, 434–445.

Strauss A. & Corbin J. (1990) Basics of Qualitative Research:

Grounded Theory Procedures and Techniques. Sage, Newbury

Park, CA.

e90 Journal of Applied Research in Intellectual Disabilities

http://nod.org/assets/downloads/2000-executive-summary.pdf

http://www.prnewswire.com/news-releases/people-with-disabilities-protest-no-representation-by-pew-research-center-121554593.html

http://www.pewinternet.org/2013/06/05/smartphone-ownership-2013/

http://www.pewinternet.org/2015/04/01/us-smartphone-use-in-2015/

Strayhorn T. L. (2012) Exploring the impact of Facebook and

Myspace use on first-year students’ sense of belonging and

persistence decisions. Journal of College Student Development

53, 783–796.

Suler J. R. (2002) Identity management in cyberspace. Journal of

Applied Psychoanalytic Studies 4, 455–459.

Taraszow T., Aristodemou E., Shitta G. & Arsoy A. (2010)

Disclosure of personal and contact information by young

people in social networking sites: an analysis using

FacebookTM profiles as an example. International Journal of

Media and Cultural Politics 6, 81–102.

Townsley R. (1998) Information is power: the impact of accessible

information on people with learning difficulties. In: Innovations

in Advocacy and Empowerment for People with Intellectual

Disabilities (ed L. Ward) pp. 77–90. Liseieux Hall, Chorley.

Tuffrey-Wijne I. & McEnhill L. (2008) Communication

difficulties and intellectual disability in end-of-life care.

International Journal of Palliative Care 14, 189–194.

U.S. Department of Commerce (2011) Exploring the Digital

Nation: Computer and Internet Use at Home. U.S. Department of

Commerce, Washington, DC, USA.

Valkenburg P. M., Peter J. & Schouten A. P. (2006) Friend

networking sites and their relationship to adolescents’ well-

being and social self-esteem. Cyberpsychology, Behavior, and

Social Networking 9, 584–590.

Verdonschot M. M. L., de Witte L. P., Reichrath E., Buntinx W.

H. & Curfs L. M. (2009) Community participation of people

with an intellectual disability: a review of empirical findings.

Journal of Intellectual Disability Research 53, 303–318.

Wohn D. Y. & Lee Y.-H. (2013) Players of Facebook games and

how they play. Entertainment Computing 4, 171–178.

Yurchisin J., Watchravesringkan K. & McCabe D. B. (2005) An

exploration of identity re-creation in the context of Internet

dating. Social Behavior and Personality 33, 735–750.

Zhao S., Grasmuck S. & Martin J. (2008) Identity construction

on Facebook: digital empowerment in anchored relationships.

Computers in Human Behavior 24, 1816–1836.

Zhao L., Lu Y., Wang B., Chauc P. Y. K. & Zhanga L. (2012)

Cultivating the sense of belonging and motivating user

participation in virtual communities: a social capital

perspective. International Journal of Information Management 32,

574–588.

de Z�u~niga H. G., Jung N. & Valenzuela S. (2012) Social media

use for news and individuals’ social capital, civic engagement

and political participation. Journal of Computer-Mediated

Communication 17, 319–336.

Journal of Applied Research in Intellectual Disabilities e91

IDO

DEAF EDUCATION AND BRIDGING SOCIAL CAPITAL; A THEORETICAL APPROACH

CHRISTIAN P. WILKENS AND THOMAS P. H E H I R

WILKENS IS A DOCTORAL STUDENT, HARVARO GRADUATE SCHOOL OF EDUCATION, CAMBRIDGE, MA. HEHIR IS PROFESSOR OF PRACTICE, HARVARD GRADUATE SCHOOL OF EDUCATION.

HE AUTHORS use elements of social capital theory to explore the rap- idly changing landscape of deaf education in America. They suggest that the formation of relationships, and networks of relationships, between deaf students and adults has a value that often goes undetected or un- derappreciated in deaf education. The authors point out that social capital theory, as applied to deaf education, generates a number of po- tentially productive areas for improving outcomes among deaf students, and for future research in the field. The article includes discussion of a number of positive steps to promote bridging social capital among deaf students.

fears will predominate if its children are brought up in com[>letcly hearing-ori- ented wodds. The tteaf child who does not know any deaf adults is a tragic fig- ure, one who has no roots and no chance of devek)ping a positive Deaf identity'. This child is all too likely, in the minds of some, to accept the hearing wodd's judgment and condemnation of the Deaf as medical anomalies— rather than people—who are lacking or incomplete.

Deaf children have always heen at risk of social isolation from their hear- ing peers, and from the hearing adult world around them. So, too, have deaf children often been at risk of getting a substandard education. Outcomes for deaf students, broadly considered, have persistently lagged behind those of their hearing peers. As a result, re- formers and educators have heen tin-

One stoH' widely .shiirctl within the American Deaf community, probably apocrphal. is that of a little hoy whose parents find him cr>'ing inconst)Iably one day after school. They ask him why he is ciying, and he replies that he is afraid to die. His mother, unsettled and a little apprehensive, asks him why in the world he is afraid, since— after all—he's a little boy. and has a long and happy life ahead of him. The boy replies that he is positive that he will die before he grows up because he is deaf, and he has never met any deaf adults. Another version of this story has the boy convinced that, instead of dying, he will become hearing as he grows up (Mindel & Vernon, 1987).

In either version, the story illustrates the sort of misunderstanding of deaf- ness, and the social isolation of deaf children, that the Deaf community

VoniMF. 153, No. 3, 2008 .4.IKRK:A. Ai-.s OF TH1-: DKAI-

DEAF EDUCATION AND BRIDGING SOCIAL CAPITAL

kering with their approaches for as long as schools for the deaf have existed—a period now approaching two centuries in the United States (Baynton, Gannon, & Bergey, 2007).

In the present article, we use ele- ments of social capital theory to ex- plore the rapidly changing landscape of deaf education in America, and to suggest what we believe are positive steps that could be taken to improve education for deaf students in the United States. We believe that the so- cial capital framework we present here helps to illuminate and clarify some of the more complex features of educa- tional reform for deaf students, and as well generates a number of productive areas for future research in the field. Social capital theory posits that human relationships, and networks of rela- tionships, have a value that often goes undetected or underappreciated in education. Human relationships rely, at their most basic and profound levels, on communication—which, for deaf students, is of overriding concern.

Deaf Education and Relational Networks Communication has been at the heart of deaf education from the beginning, since by it students connect with the world and form the sorts of social net- works that are essential for acquiring access to information, gaining em- ployment, and finding satisfaction in community life. Yet debates over com- munication with deaf children have never been ruled by empiricism alone; power, ideology, and politics have tangled over what sort of ap- proaches "should" be used with deaf children, and what sorts of eventual outcomes the field ought to seek. Ex- cellent historical reviews of the com- munication debates can be found in Baynton (199H), Branson and Miller (2002), and Lane (1992).

There is no broad consensus on

what kind of communication modal- ity works "best" with deaf students. Gallaudet Research Institute (GRl) data (2005) indicate that "auditory/oral only" approaches are currently used with 48% of deaf and hard of hearing children in the United States, "sign and speech" approaches with 40%, and "sign only" approaches with just 11%.

Philosophical and educational de- bates over deaf education gained legal and moral weight with the enactment of Public Law 94-142, the Education for All Handicapped Children Act, in 1975- While it secured rights for many deaf people, PL. 94-142 and later revi- sions of disability law and education policy made explicit the concept that deaf people were disabled—a deeply divisive issue within the field (Bran- son & Miller, 2002; Corker, 1998; Jankowski, 1997; Lane, 2002). PL. 94-142 also accelerated a shift of deaf children out of special schools that was already well under way O. Cohen (1994) and Stinson & Antia (1999) re- poaed that by the mid-1990s, 91.1% of deaf students were being educated in some capacity in their local schools. Moores (2006), using data sets from GRI's Annual Survey of Deaf and Hard of Hearing Children and Youth, con- firmed an enrollment decline of more than 60% nationally at special schools or centers for deaf children between 1970 and 2000.

The physical location of schooling provided to deaf students matters, be- cause in tandem with communication modality, it affects the range of peers and adults with whom students may interact and form relational networks. Moving out of special schools means that deaf students are exposed to fewer deaf peers, and—depending on school type—fewer deaf adults. As we comment below, this is a serious prob- lem that must be addressed.

Technology has also rapidly changed the social worlds of deaf children. Per-

haps the most educationally and so- cially significant technological change for deaf children has been the advent of cochiear implants, first approved for use in humans in the United States by the U.S. Food and Drug Administration in December 1984. The best estimate of current cochiear implant prevalence appears to be 11.2% among deaf chil- dren nationally, though this varies by region, from 7.3% in the West to 13.1% in the South (GRI, 2005).

Though consensus in the field has yet to form on precise educational "best practice" with deaf children who have cochiear implants, the devices require, a priori, some version of the auditory/oral educational approach— which was, if only briefiy, declining in popularity among educators of deaf students when cochiear implants were approved in 1984. It is equally clear that deaf children using cochiear implants present distinct educational challenges and opportunities, com- pared with deaf children who do not use the devices (Blamey et al., 2001; Hammes, Novak, Rotz, Willis, & Ed- mondson, 2002).

Notably, there has been at least one point of stability with respect to the social and educational experiences of deaf children over the past several decades: their families. Researchers have long known that most deaf children (more than 90%) grow up in mixed households, that is, ones in which the parents are hearing (Braden, 1994), and further, that very few deaf children (less than 4%) are exposed to competent, consistently visual language models at home or at school—even those children who at- tend residential or day schools for the deaf. Though researchers have de- bated the exact prevalence level for years (Moores, 2001), recent trends in genetics and preventative medicine do not seem likely to alter the frac- tionally small proportion of deaf chil-

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dren who have other deaf family members any time in the near ftjture (Mitchell & Karchmer, 2004; Schein & Delk, 1989). Even households that at- tempt to learn American Sign Lan- guage (ASL) for use with their deaf children are learners with their chil- dren, and tend to use various gestural pidgins (Braden, 1994). Worse, most educators of deaf children are them- selves hearing—and tend either to lack ASL fluency or to use communica- tion systems that compromise gestural intelligibility (Kluwin, 1981; Luetke- Stahlman, 1988; Mayer & Lowenbraun, 1990).

Nonexistent, ad hoc, or emerging language skills among family members and educators who work with deaf children present major challenges for the development of social interactions. How can deaf children, who often do not have good language models at home, possibly form either wide or deep relational networks? Further, if most of those same children also lack good language models at school, how will those networks ever form? We believe that current trends toward greater inclusion of deaf children in traditional public schools, and toward increasing early-age cochlear implant use, underscore an urgent need for ed- ucational institutions to understand the basis of social capital formation, and to deliberately help build success- ful relational networks between deaf students and deaf adults.

Deaf Education and Social Capital Communication is fundamental to how human minds are constructed, how culture manifests, and the identi- ties children and adults develop (Bar- rett, 2002). The available range of communication choices, as many parents have understood them, has typically come down to either oral or signed language systems. The distinc-

tion between the two has often yielded differential access to human, cultural, and social capital; deaf children who learn oral or written English gain ac- cess to the human, cultural, and social capital attendant on the English-using community, while deaf children who learn ASL gain access to the human, cultural, and social capital of the Deaf world (Lane, Hoffmeister, & Bahan, 1996; Padden & Humphries, 1988). Many parents, family members, and educators have made decisions about language—and modality use—with deaf children based on implicit or ex- plicit calculations of the sorts of capi- tal to which they want deaf children to have access.

It is clear that the choices families make about language and communica- tion for deaf children have an impact on how (and with whom) their chil- dren will be able to socialize as they go through life. There has been, to date, very little empirical work on the rela- tive value of these social interactions to deaf children themselves—it is almost as if discussions of language with deaf children have been entirely surren- dered to the ideological debates over "oral versus manual." We believe this is a serious gap in the field, and propose that it is both possible and necessary to quantify the value of social capital ac- cruing to deaf children as a conse- quence of decisions about language and education.

Deafchildren, like any children, be- gin to form relationships with others at very early ages. However, they face socialization challenges unique to the communication impacts of deafness. One frequently observed dilemma for deaf children is that, unless they are among the 3 % ^ % of deaf students who grow up witb a fluently signing Deaf parent, they do not share a com- m o n language with their parents, their neighbors, or their community (Mitchell & Karchmer, 2004). The so-

cialization of deaf children has histori- cally happened—and for most chil- d r e n , still happens—withi n school (including preschool) contexts (Ram- sey, 1997; Vygotsky, 1962, 1978). Thus, a look at the outcomes of socialization and social network formation by deaf children at school makes conceptual sense and provides a grounding for understanding s o m e of the cost-bene- fit analyses that parents and educators of deaf children ultimately must make with respect to communication.

Social theorists have long pointed out that differences exist b e t w e e n people in the resources to which they have access based on relational net- works (Bourdieu , 1986; Coleman, 1988; Portes & Landolt, 1996; Putnam, 2000); such networks lie at the founda- tions of social capital formation. Robert Putnam distinguished two basic types of social capital emerging from rela- tional networks: bonding and bridging. Putnam posited that bonding social capital consists of a set of resources ac- cessed through relatively direct reci- procity within a relational network. Bridging social capital, on the other hand, was conceptualized as resources accessed through relational networks outside one's immediate social milieu.

Bridging social capital, the type we focus on in the present article, is not necessarily reciprocal, but more often depends on informal communication, social networks, and general relational trust, such as that found between coworken;, parents and teachers, or broad-based coalitions and organiza- tions. Bridging social capital connects socially heterogeneous groups, and is widely understood to have extensive benefits accruing to the individual; perhaps Putnam's most widely cited finding was that joining a social organi- zation reduces one's chance of dying in a given year by as much as half!

A n u m b e r of researchers have found that social network formation in

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school—or the failure of such net- works to form—is strongly associated with student attainment and success, particularly for students who are not of the majority (G. Cohen & Steele, 2002; Stanton-Salazar, 1997,2001; Valenzuela, 1999)- And it Is during the school years that critical social networks are formed by deaf students—regardless of com- munication modality.

In 1992, the U.S. Department of Ed- ucation issued a guidance paper recog- nizing just this reality. The guidance strongly urged that school-based pro- grams for deaf and hard of hearing stu- dents plan for the "social, emotional, and cultura! needs [of deaf students], including opportunities for peer inter- actions and communication" (para. 10). Clearly, some sense has existed at the national level that opportunities for socialization in school play a posi- tive role in the education of deaf chil- dren. One of the major theories driving the guidance from the Department of Education was that positive socializa- tion could lead to the development of useful individual-level social capital (Everingham. 2001). We could not agree more.

We believe that the conscious, delib- erate promotion of bridging social capital among deaf youth is one of the most critical needs in deaf educa- tion today.

Further, we believe that the need for the deliberate promotion of such social capital among deaf youth cuts across seemingly unbridgeable divides within the field. After all, much more important to each individual than com- munication style or cochlear implant status are the real-world outcomes at- tained by each deaf child: finding and keeping friends, getting a job, connect- ing witb community resources, going to college, and having a rich and re- warding recreational or family life.

We believe that, for deaf children, tbis conception of bridging social cap- ital as a valuable resource can be help- ful in the promotion of positive school and life outcomes, Specifically, increased levels of bridging social cap- ital have been associated with

• increased trust, broader social networks, and stronger norms of reciprocity (Bronfenbrenner, Moen, & Garbarino, 1984)

• lower teen pregnancy and high school dropout rates (Sampson, Morenofî, & Earls, 1999)

• fewer teenagers involved in vio- lent crime, homicide, or suicide (Limber & Nation, 1998)

• fewer behavioral and emotional problems (Runyan et al., 1998).

• greater scbool attainment and achievement levels (Putnam, 2000)

• increased parental engagement in scbools (Coleman, 1988)

As James Coleman and Thomas Hoffer (1987) pointed out, one cannot understate "the importance of tbe em- beddedness of young persons in tbe enclaves of adults most proximate to them, first and most prominently tbe family and second, a surrounding com- munity of adults" (p. 94). Given tbat many deaf cbildren experience tbeir scbool as a kind of "second family," tbe urgency of building social capital witb tbem becomes perhaps even more significant.

We should also note that the recent proliferation of eariy-age cochiear im- plant use is not yet well studied or un- derstood; it may be tbat these deaf students who have received implants are able to gain access to various levels of capital in both the hearing anä Deaf worlds. Some excellent recent field- work examining the socialization of deaf students who have cochiear im- plants—^in particular, Bat-Cbava and

Martin (2002), Bat-Chava, Martin, and Kosciw (2005), and Christiansen and Leigh (2002)—has suggested tbat implants may belp improve deaf stu- dents' communication and socializa- tion skills. As well, there is some international evidence tbat the his- toric communication dicbotomy (oral vs. manual) faced by families and in- stitutions may not be absolute or per- manent, and tbat families may be becoming more pragmatic than ideol- ogy driven. Gunilla Preisler (2007) has noted rising demand among cochiear implant users for rigorous instruction in signed language systems in a major longitudinal study of deaf cbildren with cocblear implants in Sweden. Kristina Svartholm (2007), exploring the same trend, indicated that

parents of children with cochiear im- plants seem to be choosing schools with a signing setting to a larger ex- tent than before. These parents want their children to develop bilingual- ism in Swedish (spoken and written) and Swedish Sign Language . . . . The special schools are now seeing a number of older students who have a greater need for sign language than first expected when their parents chose local school placement among hearing children, (p. 137)

The explanation offered by Preisler (2007) and Svartholm (2007) echoes tbat of Wald and Knutson (2000), wbo found that deaf students, with or witb- out implants, place extremely bigh value on bicultural identities—tbey will always be deaf, but want access to as much information about tbe deaf and bearing worlds as possible. Not anywbere near being tools that pro- vide perfect access to auditory input, and far from reducing demand for access to a rich Deaf culture, it may be tbat cochiear implants provide a new starting point for families consid-

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ering communication options, begin- ning not with the current either/or di- chotomy but with much more robust discussions of when and how.

Svartholm's (2007) study of Swedish schoois for the deaf, though difficult to generalize to the United States, makes a forceful argument for the promotion of bridging social capital with deaf stu- dents. Using the concept of linguistic domains (Fishman, 1965,1972), Svarth- olm points out that language develop- ment takes place across a wide variety of settings—from informal, relatively simple family and friendship settings to the more formal and complex settings in academic study or professional life. She argues that promoting success among deaf students, with and without cochlear implants, means providing ac- cess to the vocabulary' and norms of the widest possible variety of linguistic domains; we provide a number of sug- gestions for doing so in the American context below.

Further, there is at least some evi- dence given by both Preisler (2007) and Svartholm (2007) that students with cochlear implants struggle to form peer or adult relationships in school through spoken language, and that many cochlear implant users (and their family members) rely on signed languages for detailed or ab- stract information, and for the cre- ation and sustenance of friendships in and outside tif school. Though Preisler and Svartholm's studies did n<H ditectly address the question, it may be that the relational networks of cochlear implant users turn out to be entirely distinct from those of nonusers; perhaps the implants fa- cilitate oral language development sufficient for the kinds of brief but necessary relational network forma- tion essential for bridging social cap- ital, while implant users also rely on signed languages for bonding social capital.

Promoting the Formation of Bridging Sociai Capitai: Some Recommendations Start at the Secondary Level There is little cause for compiacenc>' at any program, level, or school for deaf children, regardless of structure or stu- dent composition. But since bridging social capital is particularly vital for stu- dents making the transition out of sec- ondary school and into the new (and often tjuite unfamiliar) wt)rlds of col- lege, work, or other indepentient living situations, we think it most appropri- ate to begin at that level (Briggs, 1997). Secondary programs should seek to bridge the divide between colleges and their students, and employers and their students, as early as possible.

Improve Ties Between Schools and Programs for Deaf Children Currently, many parents and families of deaf children face extensive either/or decisions about how their children will be educated—often from very early ages. One parent involved in rhc Na- tional Parent Project and Survey ex- pressed a sentiment common among those trying to navigate the currently near-labyrinthine systems of services for deaf children:

It just seems to me that there's so many people, you know, that have in thtir own mind what is the right way to educate or the right method of communication and that's part of what they're tiying to pass on to par- ents . . . instead of making something available and saying, "OK, these are the things that are available, these are the things that are used, and this is where you can find out about them." (Meadow-Orlans, Mertens, & Sass- I.ehrer, 2003, p. 22)

In what is perhaps the most disap- pointing feature of the current era of

deaf education, schot)ls and prfigrams are often set up in direct competition with each other for deaf students—in what is often widely understood to be a struggle for survival. Traditional res- idential schools for the deaf, for ex- ample, have often been unable or unwilling to include students with cochlear implants—or to develop new programming that meets their needs, just as local public school districts have historically struggled to educate deaf students who use ASL (Chris- tiansen ik Leigh, 2002; Francis, Koch, Wyatt, & Niparko, 1999; Johnson, 2004). All too frequently, schools do not work together to construct an ap- propriate range of educational op- tions for children. Instead, schools and programs have frequently insisted on "package deals" in which students and families must pick residential, day, or inclusive education programs sepa- rately and exclusively. This problem, we fear, has only been accelerated by the recent rise of inclusion and early- childhood cochlear implantation— both of which could antl shoiiki be stimuli for the creation of new pro- grams, and new cooperation be- tween schools—but have all too often devolved into unhelpful strug- gles to maintain the status quo in the face of profoundly changing student populations.

Instead, the deaf education system needs to develop rf)bust placement options that, for example, allow deaf children to get solid academic prepa- ration in one placement and develop strong social and relational ties to deaf peers and adults around them, perhaps in another placement. As Svartholm (2007) indicates, students with cochlear implants may need ex- pert speech and language services in one setting and academic instruction in another, while their families may want their children to be able to con- nect with a robust ASL-using commu-

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nity as well. Right now, such options are difficult, if not entirely impossible, for families to construct. Schools and programs for deaf children absolutely must commit to forging new relation- ships (and new flexibility) built less around institutional ideologies or pro- grammatic mandates and more on a commitment to promoting the best possible outcomes among deaf chil- dren and families.

Increase Deaf Students' Access to Working Deaf Adults The American Deaf community has long supported increased access for deaf students to Deaf adults, who are seen as both skilled communication partners and positive role models. Ac- cess to Deaf adults in the context of school is thought to combat the isola- tion often felt by the deaf student in traditional public schools, and can also provide a kind of positive "role model" for the residential deaf stu- dent. Perhaps just as important, ac- cess to Deaf adults can help deaf students form relational networks by expanding the number and type of people deaf students know and are able to interact with—in a sense, by facilitating social capital formation (Padden & Humphries, 1988, 2005). Social capital, as we know, is to a large extent driven by opportunities to communicate and form relational networks.

Because residential schools for the deaf employ much larger numbers of deaf people than do traditional public schools (Janikowski, 1997), increasing deaf students' access will be an easier task for residential schools for the deaf than for inclusive education programs or oral schools. Further, deaf students attending residential schools often have deaf adult activity supervisors, coaches, and residence hall advisers to whom they can have access during af-

ter-school hours (Cohen, 1994). Yet re- cent enrollment declines at residential schools nationwide have threatened their very existence, and many have closed their doijrs entirely (Motares, 2006). We believe it would be tragic for deaf children if these institutions did not find ways to reinvent themselves, ciuickly, while better meeting the needs of a rapidly changing population of deaf children. Schtxils and programs that employ large numbers of deaf adults must reach out to other schools and programs, of all types, and de- velop relationships with the pro- fessionals and children who do not necessarily participate in classes within their walls.

We see vast reserves of valuable so- cial networks at residential schools for the deaf, and in day schools or pro- grams for deaf children that employ sizeable numbers of deaf adults. It is vi- tal, we believe, for deaf children of all sorts to have access to these deaf adults—and there are a number of ways the logistics could be managed. From after-school, weekend, or sum- mer programming, to coteaching, guest lecturing, career fairs, and job shadowing, a full range of options ex- ist that could expand the contact deaf students have with deaf adults. Here, creativity and a willingness to over- come traditional boundaries are ab- solutely needed—and can only pay dividends in the ongoing fight against the isolation so prevalent among deaf youth.

Bring Parents of Deaf Children Together With Other Parents Increasing parental engagement in ed- ucation is an explicit goal of the Indi- viduals With Disabilities Education Act. One mechanism for doing so is Parent Training information Centers (PTIs: also known as Community' Parent Re-

source Centers, or CPRCs). Each state has at least one such center. PTIs are funded under IDEA, and their mission includes educating and connecting parents of students with disabilities, in- cluding students who are deaf. Yet many parents of deaf children still have limited access to other parents of deaf children (Hintermair, 2006; Luterman, 1999: Luterman & Kurtzer-White, 1999; Meadow-Orlans et al., 2003; Tolland, 1995). It also seems likely that many parents of deaf children do not have strong ties to traditional parent-group structures from which they and their children could benefit—though this has yet to be studied to any extent; an emerging area of interest will be whether and how well parents of deaf students in inclusive settings are inte- grated into the parental networks of their schools, whether disability fo- cused or otherwise.

We feel that increasing the access that parents of deaf children have to traditional parent groups could be ex- tremely valuable. For example, recent research shows that extensive edu- cational benefits accrue from the re- lational ties parents are able to forge among themselves (Kahlenberg, 2003; Rothstein, 2004). Parental group par- ticipation has been found to raise the educational aspirations and grade expectations of parents for their chil- dren and to increase parental auton- omy and perceptions of support, parental emotional .support for their children, available resources and learn- ing experiences fijrchildren, and direct parent participation in school activi- ties (Rosenzweig, 2001). Further, the greater the interaction parents of deaf children can have with each other, the greater the likelihood that families will gain access and exposure to a variety of programming, educational, and technical supports that are uniciue to the needs of their children.

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Support Deaf Students' Participation in Activities of All Types One of the most prescient lessons of current trends toward inclusion, and of rising cochiear implant use among deaf chiklren, is that many deaf children feel isolated from their peers, and from the adults who surround them—even tliough hearing lo.ss seems not to be the overriding factor in their isolation (Cappeli, Daniels, Durieux-Smith, Mc- Grath, ¿c Neuss. 1995; Scheetz, 1993; Stinson & Kluwin, 1996; Tvingstedt, 1993). This is damaging at a number of levels, particularly since it is known that student participation in activities is a major predictor of positive school outcomes {Kluwin, McKjres, & Gaus- tad, 1992; Stewart & Ellis, 2005; Stinson & Antia, 1999). Social isolation is, by definition, one i)f the major barriers to .social capital formation of all kinds. Conscious and deliberate planning for deaf student participation—and delib- erate recruitment of deaf students by clubs, organizations, and w(jrk sites that offer internships or job-shadowing opportunities—can and should help to combat such isolation. Some mecha- nisms to do this may be as simple as |')roviding after-school busing so that students can get home, identifying and recruiting parents or other adults to coach or lead groups, or providing technical support to inclusive educa- tion programs that want to include deaf students in their activities.

To return to the story that began the present article: One of the most pro- found responsibilities shared by par- ents and educators of deaf children is to remove the isolation that many of these children feel—from adults, from their peers, and from the rich and vi- brant hearing and deaf wodds of which they can he members. As children grow and mature, it is common for them to wonder about the roles they

play, their identities, and their "fit" in the varieties of deaf and hearing wodds to which they will have access. Deaf children need access to hearing and deaf adults alike; it is a lonely world for anyone to feel like "the only one" of any type—and with ever-increasing numbers of deaf professionals, ath- letes, technicians, and leaders, it would be a lost opportunity- not to connect them with youth. A gotxl example of progress towarcis this goal is the re- cently created Rochester After School Academy (RASA), at the Rochester School for the Deaf, which brings together deaf children from all over the city for academic, recreational, and social after-school activities 4 days per week. (Information on RASA can be found at http://www.rsdeaf.org/ enhancement academic.as p.)

Better Prepare Deaf Children for College and Work Overall, deaf studcnt.s in the United States are underprepared academi- cally for college (Menchel, 1995) and work (Rusch & Chadsey, 1998), and there are large cultural gaps between the K-12 world and postsecondary or vocational life (Neumark, 2007). Deaf adults are consequently underem- ployed. Deaf adults in the United States demonstrate lower labor force participation and education attain- ment rates than their hearing coun- terparts—even those with similar academic or vocational skills (Cooper, 2003; Crammatte. 1987; I.ane, 1992). We believe that one of the overriding factors in deaf adult underemploy- ment has its roots in low levels of academic achievement among deaf children (Leigh ik Power, 2004) and a lack of structural and relational conti- nuity between secondary education and the (often quite different) worlds of college and work (Bowe, 2003; Punch, Hyde, & Creed, 2004). Better

academic preparation and stronger transition programming are crucial components in increasing the social capital of deaf children. The opportu- nities schools have to build relational network.s—and, consequently, social capital—among deaf students will re- main stunted until academic achieve- ment is greatly increased.

To this end, we believe that the re- form efforts of the No Child Left Be- hind Act (RL, 107-110) are a positive first step. While there are justifiable concerns about both current levels of resources and capacity (see Moores, 2005a), we feel that a focus on data- driven decision making, coupled with a prioritization of academic outcomes, has long been missing from the field— and can ultimately only help deaf students. To that end we endorse the suggestions of Moores (2005b), who pointed out a need for more consis- tent assessment and reporting of deaf students' academic achievement na- tionally, improved and mijre consis- tent training of teachers of the deaf (and, for that matter, certification re- quirements of teachers (jf the deaf), more (and greater dissemination of) research on "best practice" with deaf children engaged in challenging curric- ula (Marschark, 2001), and improved and more consistent interpreter train- ing (La Bue, 1998).

Finally, a great deal more must be done to strengthen the ties between K-12 schools and the colleges or em- ployers with which deaf students ma- triculate. Among the most uncertain times in a student's life, the initial postsecondary years yield decreased contact with supportive adults, de- creased legal protections, and often decreased influence of immediate family and caretakers (Steere, Rose, & Cavaiuolo, 2007). Without improved ties between institutions, even the best transition planning in the world

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can fall on the shoulders of students alone, who may see continued chal- lenging academic work or appropriate employment as little more than a long, uncertain (and potentially quite lonely) battle,

None of these reforms will come quickly or cheaply. But the focus on student outcomes is a critical first step, and one that can help students build not just academic skills but also what we believe to be vital social capital that will help them as they look to lives lived—in large part—beyond the walls or years of formal K-12 instruction.

Conclusion We believe that successful social capital formation is deeply important for deaf students, since the barriers they face on departure from school—whether to college, work, or community life— are on average much greater than those feced by their hearing peers. So- cial capital can buffer the negative im- pact of discrimination and ameliorate some, if not all, of the challenges stu- dents face when transitioning out of the relatively sheltered confines of K-12 schcH)ling and into the real world. To the extent that a huge number of deaf graduates have struggled in higher education or employment, the vast majority of programs and schools for deafchildren, whatever their insti- tutional characteristics, have a great deal of room to grow.

Perhaps the most fundamental idea is that schools—in whatever capacity and programming they provide—must deliberately promote and maintain re- lational networks on as wide a scale as possible. Schools should, we believe, seek to link deaf children to the com- munities that surround them, deaf and hearing alike—and should do so with the understanding that there are tangi- ble benefits for their students in doing so. From a social capital standpoint, tlie formal structures of the school ex-

perience—whether residential, day, or tradititinal public (or, for that matter, exclusively oral, strictly ASL, cochlear implant-focused, or something else entirely)—matter less than the rela- tional ties the school is able to help forge between students and the adults who surround them.

We believe that the promotion of social capital formation among deaf students can help unify and direct the development of a frequently frac- tious field. By emphasizing student outcomes, and by constandy remind- ing educators to focus on what mat- ters for students (and the adults they will one day become), social capital theory provides bridges between philosophies and methodologies that can seem exclusive, often to the inad- vertent detriment of our deaf students. Given rapid changes in demography and technology, a valuable opportu- nity now exists to reinvent deaf edu- cation entirely over the next few years—years that educators can and should shape in the direction of solid academics, better ties between schools and programs, and strong and lasting ties between deaf students and the re- sources in the communities that sur- round them.

References Barrett, E. (2002). Hwyian evoluliouafy psy-

cbology. Princeton, NJ: Princeton University Press.

Bat-Chava, Y, & Martin. D. (2(K)2). Sibling rela- tion.ships of deaf children: The impaci of child and family characteristics. RehabilUa- lioTi Psycholog^'. 47. 73-91.

Bat-Ch:iva. Y. Martin, D., & Kosciw, J. f2OO5). Longitudinal improvements in communica- tion and socialization of deaf children with ccjchlear implants: Evidence from parental reports. Journal of Child Psychology and Psychiatry. 46 (12). 1287-1296.

Baynton.D. (99a)- forbidden signs.- Americiin culture and tbe campaigti against sign language. Chicago; University of Chicago Press.

Baynton, D., Gannon, J., & J. Berijey. (2007). Through Deaf eyes: A photographic history of an American community. DC; Gallaudet University Press.

Blamey, P, Sarant, J,, Paatsch, 1… Barry, J., Bow, C , et al. (2001). Relationships among speeth fierccption. production, language, hearing loss, and age in children with impaired hear- ïng. Journal of Speech, Language, anä Hear- ing h'ese(m:h. 44 (2), 264-285.

Bourdieu, P (1986). The forms of capital, In J. RÍLh:ird.si)n (Ed.), Handb(x)k of theory and research Jar the sociolog)' of education (pp. 241-258). New York: Greenwood Press.

Bowe, F. (20031. Ti^nsition for deaf and hard of hearing students: A blueprint for change. fournal of Deaf Stiuiies arul Decif Educa- tion. H (-í). 4H5-Í93.

Braden, J. (1994). Deafness, deprivation, and IQ. New York: Plenum Press.

Branson, J., & Miller, D. (2002). Damned for their difference: The cultural construction of deaf people ¿is "disabled": A sociological bistory. Washington, DC; Gallaiidct Univer- sity Press.

Briggs, X. (1997). Moving up versus moving out: Neighborhood effects in housing mo- bility programs. Housing Policy Debate, 8 (I). 195-234.

Bronfenbrenner, H., Moen. P, & Garbarino, J. {1984). Child, family, and cummuniiy. In R. Parke {VA.). Rerietv of child development research: Vol. 7 (pp. 283-328). Chicago: Uni- versity of Chicago Press.

Cappeli, M., Daniels, D., Durieux-Smith, A., McGrath, P, & Neuss, D. (1995). Social devel- opment of children with hearing impair- ments. Volta Review, 97, 197-208.

Christiansen,.!., & Leigh. 1. (2002). Cochlear im- plants in children: Ethics and dxiices ifeh- ington, DC; Gallaudet university Press.

Cohen, G., & Steele, C. (2002). A barrier of mistrust: How negative stereotypes affect cross-race mentoring. In J, Aroason (Ed.), Improving academic acbievement (pp. 305-331). Boston: Academic Press.

Cohen, O. (1994). Introduction. In R. J{jhnson & O. Cohen (Eds.), Implications and com- plications for deaf students of tbe full inclu- sion movement, (pp. 1-6). Washington, DC; Gallaudet University.

Coleman,J. (1988). Social capital in the creation of human capital. American Journal of So- ciology, 94. s95-sl20.

Coleman,.!., tk Hoffer, T. (l'-Ml). Public and pri- vate schools: The impact of communities. New York: Basic Books.

Cfxiper, J. (2003). From exclusion to inclusion; Some lessons from abroad. In S. Powell (Ed), Special teaching in higher educa- tion: Successßä strategies for access and in- clusion (pp. 19-36). London: Kogan I'age.

Corker, M. (199H!. Deaf and disabled, or deaf- ness disabled'"' Towards a human rights per- spective- Philadelphia; Open University Press.

Crammatte, A. (1987). Meeting tbe challenge: Hearing-impaired profes.sionals in the workplace. Washington, DC; Gallaudet Uni- versitv Press.

VO1J.JME 153, No. 3, 2008 AMERICJVN ANNALS O F 'IKE DEAF

Everingham, C. (2001). Reconstituting commu- nity; Social justice, social order, and the pol- itics of coaimunity. Australian Journal of Social Issues, .-Í6 (2)., 105-122.

Fishman, J. (1965). Bitingualism with and with- out diglossia; diglossia with and without biltngualisni. Journal of Social Issues, 23 (2), 29-38.

Fishman, J. (Ed.). {1912). Advances in the soci- ology of languaf^e. The Hague, Nether- lands; Mouton.

Francis, H., Koch, M,, Wyatt. R.. & Niparko, J- (1999). Trends in educational placement and cost-benefit considerations in ehiidren wilh cochiear implants. Archives of Oto- laryngalof(-—Head and Neck Surgery, 125. 499-505.

Gallaudet Research Institute. (2005). Regional and national summary report of data ßom the 2004-2005 Annual Survey of Deaf arui Hard of Hearing Children and Youth. Washington, DC: Gatlaudet University.

Hammes, D., Novak, M., Rotz, L,, Willis, M,, & Kdmondson, D. (2002)- Early identification and cochiear implantation; Critical factors for spokt;n-language development. Annals of Otology, Rhinology, and Laryngotog}', 189 (Suppl.), 74-78.

Hintermair, M. (2006). Parental resources, parental stress, and socioemotional develop- ment of deaf and hard of hearing children.

Journal of Deaf Studies and Dmf Educa- tion. 11. 493-513.

Jankowski, K. (1997). Deaf empowerment: Emergence, struggle, and rhetoric. Wash- ington. DC; Gallaudet University Press.

Johnson, T (2004). W(h)ither the Deaf commu- nity? Population, genetics, and the future of Australian Sign language. American Annals of the Deaf 148. 358-375.

Kahlenberg, R, (2Q{)i). All together mnv: Creat- itig middle-class schools through puhlic school choice. Washington, DC: Brookings institution Press.

Kluwin,T. (1981). The grammaticality of manual representations of English in classrtwm set- tings. America?! Annals of the Deaf 127. 852-859.

Kluwin, T. Moores, D., & Gaustad, M. (Eds.). ( 1992). Towai-d effective puhlic school pro- grains for deaf students: Context, process, and outcomes. Nev/York: Teachers College Press-

^ Bue, M. (1998). Interpreted education: A study of deaf students' access to the con- tent and form of literacy instruction in a ifiaimtreamed high school English cla.'is. Unpublished doctoral dissertation, Harvard University, Cambridge, MA.

Lane, H. (1992). The mask of heneiHjlence: Dis- abling the Deaf coinmunity. New York: Knopf.

Lane, H. (2002). Do deaf people have a disabil- ity? Sigrt language Studies. 2 (4), 356-379.

Uine. H-, HofFmeister. R., & Bahan, B. (1996). A

Journey into tbe Deaf-world. San Diego, CA; Dawn Sign Press.

liiigh. G.. & Pijwer, D. (2004). Education of deaf children at the turn of the twenty-first cen- tury. In D, Power & G. Leigh (Eds.), Edticat- ing deaf children: Across the curriculum, across the ivortd (pp. 9-21). Washington, DC; Gallaudet University Press.

Umber, S., & Nation, M. (1998). Violence within the neighborhood and community In P Trickett & C. Schellenbach (Eds.), Violence against children in the family and the community (pp. 171-194). Washington, DC; American Psychological Association.

Luetke-Stahiman, B. (19Ö8). A series of studies investigating SEE II use. In J. Gustason (Ed.), Signing English In Total Communication: Exact or not-" (pp. 128-131)- Los Aiamitos, CA: McKlern Sign Press.

Luterman, D. (1999). The young deaf child. Boston; Little Brown.

Luterman, D., & Kurtzer-White, F-. (1999). Iden- tifying hearing loss; Parents' needs. Ameri- can Jouniat of Audiology. 8{1), 13-18.

Marschark. M. (2001). Educating deaf students: ñx>m research to practice. New York: Oxford Liniversity Press.

Mayer, H, ¿S: Lowenbraun, S. (1990). Total Com- munication use among elementary teachers of hearing impaired children. American An- nals of the Deaf 135. 257-263.

Meadow-Orlans, K., Mertens, D., & Sass-Lehrer. M. (2003.) Rirents and their deaf children: The early years. Washington, DC; Gallaudet University Press.

Menchel, R. (1995). Deaf students attending regular four-year colleges and universities. Unpublished doctoral dissertation, Harvard University, Cambridge, MA.

Mindel, E., ik Vernon, M. (Eds.). (1987). They grow in silence: Understanding deaf chil- dren and adults. Boston: College Hill Press.

Mitchell, R., & Karchmer, M. (2004). Chasing the mythical ten percent; Parental hearing status of deaf and hard of hearing students in the United States. Sigtï Language Studies. 4 (2), 138-163.

Moores, 0 . (2001), Educating the deaf Psy- chology, principles, and practices (5th ed.). Boston: Houghton Mifilin.

Moores, D. (2005a). Progress is not our mast important product. American Annals of the Deaf 150, 249-250.

Moores, D. (2005b). The No Child Ix-ft Behind and the Individuals With Disabilities Educa- tion Acrs: The uneven impact of partially funded federal mandates {)n education of deaf and hard of hearing children. Ameri- can Annals of the Deaf 150, 75-80.

Moores, D- (2006). Comments on "W(h)ither the Deaf community?" Sign Language Stud- ies. 6 (2). 202-209.

Neumark, D, (Ed.). (2007). Improving .school- to-u'ork iransitiotu- New York; Russell Sage Foundation.

Padden, C . & Humphries, T (1988). Deaf in America: Voices from a culture. Cambridge, MA: Harvard University Press.

Padden, C . & Humphries, T (2005). Inside Deaf culture. Camhridge, MA; Harvard University Press.

Portes, A., & Undolt. P (1996). The downside of social capital. American Prospect. 26. 18-21.

Preisler, G. (2007). The psychosocial develop- ment of deaf children wich œchlear im- plants. In I,. Komesaroff (Ed.), Surgical consent: Bioethics and cochiear implan- tation (pp. 120-136). Washington, DC: Gal- laudet University Press.

Punch, R., Hyde, M.. & Creed, P (2004). Issues in the sch<xjl-to-work transition of hard of hearing adolescents. American Annals of the Deaf 149, 2S-38.

Putnam,R. (2000). Bowling alone: Thecollapse and revival of American community. New York: Simon & Schuster.

Ramsey, C. (1997). Deaf children in puhlic schools: Placement, context, and conse- quences. Washington. DC; Gallaudet Uni- versit>' Press.

Rosenzweig, C. (2001, April), A meta-analysis of parenting and school success: The role of parents in p>x>moting students' academic ¡¡erfonnance. Paper pretientetl to the meet- ing of the American Educationai Research Association, Seattle, WA.

Rothstein, R. (2004). Class and schools: Using social, economic, and educationai rejbrm to close the hlack-white achievement gap. New York: Economic Policy Institute.

Runyan, D., Hunter, W, Socolar, R., Amaya- Jackson, L., English, D., Undsverk, J., et al. (1998). Children who prosper in unfavor- able environments; The relationship to .so- cial capital./W/ßincs, ¡01 (1), 12-18.

Rusch, F., & Chadsey. J. (Eds.). (1998). Bey>ond high school: Transition from school to tvork. Belmont, CA: Wadsworth.

Sampson, R., Morenoff,J., & Earls, F, (1999). Be- yond scx:iat capital; Spatial dynamics of col- lective efficacy for children. American Sociological Review. 64, 633-Ó60.

Scheetz, N. (1993). Orientation to deajhess. Needham Heights, MA; Ailyn & Bacon.

Schein J . , & Delk, M. (1989). The deaf popula- tion of the United States. Silver Spring, MD; Natit)nal Association of the Deaf

Stanton-Salazar. R. (1997). A stKial capital frame- work for understanding the socialization of raci;il-minority children and youth. Harvard Educational Revieu-: 67(1), 1-40.

Stanton-Salazar, R. (2001). Manufacturing hope and despair: The school and kin support networks of U.S.-Mexican vouth. New brk: Teachers College Press.

Steere, D., Rose, E., & Cavaiuolo, D. (2007). Crowing up: 'lYansition to adttlt life for students with disabilities. Boston: Pearson Allvn & Bacon.

VouiMR 153, No. 3 , 2 0 0 8 AMERICAN ANNAI.S OF THF. DEAF

DEAF EDUCATION AND BRIDGING SOCIAL CAPITAL

Stewarl. D., & Ellis, M. (2005). Sports and the deaf child. American Annals of the Deaf 150. 59-66.

Stinson, M., & Antia, S. (1999). Considerations in educating deaf and hard-of-hearing students in inclusive settings, yowmia/ of Deaf Studies ami Deaf Education, 4 (3). 163-175.

Stinson, M., & Kluwin, T. (1996). Social orienta- tions toward deaf and hearing peers among deaf adolescents in IcK̂ al public high schools. In R Higginfi & J. Nash (Eds.), understanding deafiiess socially (pp. 113-134). Springfield, IL: Charles. C. Thomas.

Svartholm, K. (2007). Cochlear-implanted chil- dren in Sweden's bilingual schools. In

L. Komesarofî (Ed.), Surgical consent: Bioethics and cochlear implantation (pp. 137-150). Washington, E>C; Gallaudet Uni- versity Press.

Tolland, A. (1995). Mothering a child with hear- ing loss. Hearing Loss, 16 (4), 12-17.

Tvingstedt, A. (1993). Social conditions of hearing-impaired pupils in regular class- rooms (Monograph No. 773). Malmö, Swe- den; University of Lund, Department of Education.

U.S. Department of Education- (1992). Deaf students' education services. Retrieved June 9, 2008, from http://www.ed.gov/ about/offices/list/ocr/docs/hq9806.html

Valenzuela, A. (1999). Suhtractiveschooling: is- sues of caring in education of U.S.-Mexican youth Albany: State University of New York Press.

Vygotsky, L. (1962). Thought and language. Cambridge, MA: MIT Pre,ss.

Vygotsky, L. (1978). Mind in society: The de- velopment of higher psychological proc- esses. Cambridge, MA: Harvard University Press.

Wald, R., & Knutson, J. (2000). Deaf cultural identity of adolescents with and without cochlear implants. Annals ofOtolog}', Rhi- nology, and Laryngology. 109 (Suppl. 185), 87-89.

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