South Asian disabled young people and their families

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PPP R E S S

��•POLICY

Yasmin Hussain, Karl Atkin and Waqar Ahmad

South Asian disabled youngpeople and their families

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South Asian disabled young people and their families

First published in Great Britain in July 2002 by

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Yasmin Hussain is Research Fellow, Department of Social Policy and Sociology, Karl Atkin is Senior Lecturer, Centre

for Research in Primary Care and Waqar Ahmad was Professor of Primary Care Research and Director of the Centre for

Research in Primary Care during the project, all at the University of Leeds.

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Contents

Acknowledgements iv

1 Introduction 1Aims of the research 1The research methods 1

2 Young people’s views on identity: religion, culture and ethnicity 3Ethnicity 3Religion and culture 4Social change 6Gender and culture 7Summary 8

3 Views on marriage and family 9Part of the family 9Finding a marriage partner 13Summary 15

4 Disabling barriers and racism at work and at home 16Young people’s views on disability 19Young people’s views on work 21Summary 22

5 Using the services 23Education 23Health and social services 25Summary 26

6 Implications for policy, practice and research 27Learning about ethnicity, culture and religion 27Relationships and disability 28Social views of disability 29

Bibliography 31Appendix 33

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Our greatest debt is to the young people, theirparents, brothers and sisters who shared theirexperience with us. Considerable thanks must alsogo to the many professionals who gave freely oftheir time and goodwill in helping the project.Particular thanks go to Zoebia Ali, GhazanfarBhatti, Paul Bywaters, Elaine Evans, KhalidHussain, Saeed Lunat, Alyas Karmani, AnitaPierides and Mike Smith.

Hazel Blackburn provided invaluableadministrative and secretarial support. We are alsograteful to our many colleagues at the Centre forResearch in Primary Care, who were supportive ofour work and willing to listen and offer advice.Special thanks go to Lesley Jones and AngelaHemingway, who helped edit this report.

The Joseph Rowntree Foundation providedfinancial support for the project. Emma Stone, ourliaison officer, provided helpful guidance andsupport.

Finally, we benefited from the expertise of theadvisory committee: Bryony Beresford, SulemanChunara, Aliya Darr, Asif Hussain, AlisonO’Sullivan, Mark Priestley, Mohammed Shabir, IainSmith, Emma Stone, Selina Ullah and AyeshaVernon. Our thanks to all these people, whosesupport was vital to the successful completion ofthe project.

Acknowledgements

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Introduction

Aims of the research

This report is about the views of South Asianyoung people with impairments. We wanted tofind out how everyday lives were reflected inpolicy and practice. Little is known about youngpeople from minority ethnic communities withimpairments and this sometimes affects how theyare treated by the services. Myths andstereotypes about different ethnic groups can leadto discrimination. Policy and practice are notalways based on what people actually want. Thisstudy set out to understand the views youngpeople and their families had about their lives inorder to try to improve this situation.

We aimed to find out about:

• ideas about impairment and disability amongyoung South Asian people;

• what they and their families thought of theformal and informal support which theyreceived;

• how gender, age and friendships affect theexperience of impairment;

• how much the experience of white peoplewith impairments might influence servicesused by South Asian people;

• the effects of culture, religion and ethnicity onyoung people’s lives.

We started from the everyday experience of theyoung people themselves. We talked to youngpeople about their families, friends and networksas well as the changes they were making in theirlives such as school and work and how they sawthe future. We looked at what had been writtenbefore about these topics by other people andsome of our own work on disability and chronic

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illness, with regard to people from minorityethnic communities.

The research methods

The project was carried out by Yasmin Hussain,Karl Atkin and Waqar Ahmad from the Centre forResearch in Primary Care, University of Leeds.

We spoke to 29 disabled young people: 16 youngmen and 13 young women. We were keen to seehow disabled and non-disabled people gotthrough times of change (education, work,possibly living away from home, building theirown families). We included people who wereaged between 17- and 30-years-old. (See theAppendix for more details about the people weinterviewed.)

Nineteen young people were Muslim and 10 wereSikh. We could not find anyone Hindu tointerview although we tried very hard to do so.This was partly because of the area in which wewere working but also reflected difficulties whichwe had experienced before in other work. OneHindu brother was interviewed but unfortunatelywe could not interview the young person with theimpairment. All the respondents had left school.

We also talked to 14 parents (eight describedthemselves as Muslim, six as Sikh) and 15brothers and sisters. We contacted them throughthe young people themselves. We interviewedbrothers and sisters, so we could compare thedisabled young person’s experience withsomeone of a similar age and gender in thefamily.

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We were introduced to young people by variousorganisations (both statutory and voluntary) fromWest Yorkshire and a small number from the WestMidlands, as well as by community members.This was especially important because we wantedto include young people who might not be intouch with services. The interviews with youngpeople were mostly done at home, althoughseven wanted to meet somewhere else. Parentswere interviewed at home.

We wanted to ask about what they thought ofdisability and the barriers, attitudes anddiscrimination they experienced rather than themedical effects of impairment. Some youngpeople included in the study had been born withimpairments, others experienced impairmentslater on, including cerebral palsy, multiplesclerosis, arthritis and impairments because ofstrokes and accidental injury.

The young people and their families were offereda choice of interviewer (male or female) andwhich language they wanted to be interviewed in.Ten interviews were in Punjabi, one in Urdu, and47 were in English.

We used qualitative research methods because wewere interested in what young South Asianpeople and their families thought of their livesfrom their different perspectives. We also wantedto know about the other influences on them, howthey saw impairment, religion, ethnicity, culture,age and gender and what they thought ofthemselves and how others saw them as well astheir experience of different types ofdiscrimination.

We wanted to find out about the way thatdisability worked to stop people doing the thingsthat they wanted to do and how much they feltleft out or looked down upon because of it.Having an impairment is made worse if you feelthat people treat you badly – is thatdiscrimination different for South Asian youngpeople and does it affect the way the serviceswork?

We were interested in young people’s lives. Thisreport was carried out against a background ofpolicy initiatives such as Quality Protects, reportssuch as Excellence not excuses: A jigsaw of services(SSI, 2000) and They look after their own don’tthey? (SSI, 1998), and legislation such as the 2000Race Relations Amendment Act. Changes aretaking place which may be having an impact onpolicy and practice in relation to institutionalracism.

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2Young people’s views on identity:religion, culture and ethnicity

This chapter is about how young people seethemselves, and the influences of religion, cultureand ethnicity.

A positive perspective on disability can help giveyoung people a strong view of themselves. Thesocial model of disability, though, can also reflecta Eurocentric view, that of white culture, whichmight seem to undermine other cultural, religiousand ethnic values. Independence and autonomy,for example, may be interpreted differently andthey might not have the same meaning amongdifferent ethnic groups. Bignall and Butt (2000)found this to be true in their study of blackdisabled young people.

For young South Asian people in the UK, ideas ofindependence might be a combination of theirparents’ ethnic, cultural and religious values aswell as those of the broader British culture. Thisis why independence might be as important toSouth Asian young people living in the UK as totheir white counterparts, but it may be expressedquite differently. The accounts of young peopleand their parents reflect this. Robina’s mothersaid:

“But I think within our culture it’s difficult ...like I couldn’t say to my parents like I’mgoing to live independently, like an Englishperson could do that, there would bedifficulties.”

This is not to say that the parents and youngpeople had no sense of independence. Indeed,many mentioned it as important. Young peoplewere especially irritated if their parents tried torestrict their attempts to become independent.Developing some separation from their parentsand having some control over their own lives,

however, was not always associated with leavinghome and living away. The young people tried tobalance having more control over their lives withbeing dependent on one another within thefamily – and giving and taking. More generally,being independent was a part of young people’sdesire to value their ethnic, cultural and religiousdifferences. It became important both in theirexperience of disability and in its own right, as animportant part of identity. This seems to be thecase for the ‘second generation’, whether or notthey have an impairment. Academic, policy andeveryday discussions tend to put a lot ofemphasis on ‘cultural conflict’ between youngpeople and their parents. Literature on relationsbetween generations, however, describes socialchange but also culture being passed down to thenext generation. Does impairment or disabilitychange that and is it influenced by ethnic,religious and cultural factors?

Ethnicity

It is not easy to define ethnicity. The termincludes language, culture, religion, nationalityand a shared history. It is also seen as a politicalsymbol which marks out being excluded by apowerful majority but also solidarity with othersin similar situations. It was significant to askyoung people and their families their views onthe subject.

Contact with the country where their parentscame from could be a large part of identity andsuch links were important for nearly all theparents. Impairment did have an effect on theselinks. Several young people and their familieswere reluctant to visit their countries of origin

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because of the practical difficulties of air traveland organising the trip. Young people and theirparents also felt that the support available in theUK would not be so readily available in Pakistanor India. Some of the other reasons families gavefor not visiting their homeland were about theway South Asian societies saw impairment anddisability. Both young people and their parentsfelt that, despite the negative view of disability inthe UK, disability carried a greater sense of stigmaand discrimination in South Asian countries.

Young people with impairments and theirbrothers and sisters had a mixed view of theirparents’ homeland, as do many other South Asianyoung people living in the UK. Gurubax’sbrother has never been to India and does not feelany particular links to his parents’ homeland: “Icome from here”. Gurubax shared this view.More young people and their brothers and sistersidentified with being ‘British’ than being‘Pakistani’ or ‘Indian’. Their sense of Britishnesswas often matter of fact because of being bornand living in Britain. Mushtaq’s brother said,“England’s my country really, just here, I’m usedto here and everything”. Young people and theirbrothers and sisters also had a strong sense ofbeing British because they compared what wasavailable to them in the UK and in South Asia. Aspart of this, there was a general sense that theviews held by the South Asian community livingin the UK were less rigid than those of theirparents’ homeland. Waseem’s sister dislikedPakistan: “It’s very narrow minded”. Some of theyoung people with impairment often describedthemselves as British, and linked this to disabilityand being given more ‘respect’ in Britain thanPakistan or India. The negative experiencesmentioned before perhaps added to the youngpeople’s sense of being British; Britain wasassociated with being more ‘disabled-friendly’. Sohaving a disability could influence the youngperson’s view of where they belonged.

Their parents valued trips to their homeland.However, they thought that children learning theircommunity language was more important thankeeping in touch with the parental homeland.Young people and their sisters and brothersshared this view and this explained why many ofthem could speak a language other than English.Both Fatima and her sister had learnt Punjabi.Her sister said, “otherwise it’s like losing yourown language”. However, several disabled youngpeople had not been encouraged to learn their

parents’ language, unlike their brothers andsisters. Sometimes this was seen as part ofdisability, for instance, if they had speechimpairments. In other cases it was because thefamily felt the young person had enough to copewith, besides learning another language. Againthe effect of impairment should not be made toomuch of. Some of the brothers and sisters weinterviewed could not speak their parents’language either. How much the parentsemphasised their ties with their homeland and thelearning of their language was the key to theresponses of their children. If the parents hadlittle interest, for example, it was unlikely that anyof their children had strong ties with their parents’country of birth or whether they spoke theirparents’ language.

Religion and culture

Religion also offered an identity for a South Asianyoung person living in the UK and one that wasassumed to be very important for families.Gurucharan’s mother said that all her childrenwere keen to learn about religion:

“It is important. If you don’t take them tothe temple then they do not know aboutreligion. We are not like white people andwe make sure our children know aboutreligion.”

Muslim parents said the same sort of things andreligious observance was usually valued. Nargis’father wanted all his children to learn about theirreligion and go to the mosque: “It gives youpeace of mind, a sense of self-worth and it tellsyou who you are”. Parents felt sad if they sawimpairment interfering with their child’s religiouseducation.

In fact, several young people did not have thesame access to religion and culture as their non-impaired brothers and sisters. Nineteen-year-oldTahir did not know much about religion and hecontrasted his knowledge with that of his brotherswho were able to read the Qur’an and attend themosque: “I don’t go to the mosque because I’mdisabled and they don’t teach me nothing”.Significantly, some of the parents – all Muslim –felt their child’s impairment excused them fromreligious practices. Tahir’s mother described howher son’s impairment meant that he did not learn

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the Qur’an: “It would be too much to ask”. Herother children, however, did learn about Islam.Isma’s mother took a similar view, feeling that herdaughter was unable to practise religion: “Allahunderstands this. Islam gives priority for thedisabled”. Twenty-four-year-old Mushtaq’sbrother said his brother knew nothing aboutreligion:

“I don’t think he even knows how to read[the Qur’an]. I don’t know. Because I don’tthink my mum’s ever taught him. I thinkmy mum thought he was disabled and youknow he doesn’t really need to know thatmuch.”

Even among the majority of families who wantedtheir children to learn about religion, youngpeople experienced difficulties. They often hadpoor access to wider community networks. Manyfelt isolated within their own South Asiancommunities and this did not help them topractise their religion. A particular problem wasreligious education. There was an emphasis onrote learning in both mosques and temples andon using other spoken languages for religiousinstruction (usually Urdu, Punjabi or Hindi).Teachers sometimes failed to accommodate theyoung person’s impairment or did little to supportor encourage them. Inzimam knew less aboutreligious teaching than his non-disabled brothers.He was made to feel different when he attendedthe mosque and was taught in a separate room,away from the other children. Furthermore, headded, “the Imam did not seem that interested inteaching him”. Moeen’s mother said that theImam had told her son, who had an impairment,to stay at home, yet he was willing to teach herother children. The young people themselveswere also unhappy with the reception they gotwhen they attended religious services. Azhar wasdisappointed that his brothers and sisters knewmore about religion than he did. He felt that thiswas because he did not feel welcome in themosque on account of his cerebral palsy. SoAzhar no longer went there. Hardeep hadstopped going to the temple because of peoplestaring at her. Gurudev’s mother used to go tothe temple with her son but did not go anymorebecause of the lack of disabled access. Theremay be limited resources for mosques’ andtemples’ religious instruction classes but the factremains that disabled young people found themunsupportive places. Religious communities needto address the disabling barriers which they create

by isolating or discriminating against people withimpairments.

Some of the Sikh families came across theologicalbarriers to learning about religion as well aspractical ones. For some of these families theirchild’s impairment was associated with the sins ofa previous life. This view reflected the responseof the wider Sikh community, even if the parentdid not agree with it. Jagjeet’s mother explainedthat other people in the Sikh community believedthat she was being punished for past life sins:

“It’s like the olders (sic), you know, theyassume that I’ve been punished forsomething that I must have done, somethingwrong in my past life.”

It is not surprising that most of the Sikh youngpeople themselves did not usually believe thisaccount of disability; it would have beenpotentially damaging to their idea of themselves.Sometimes tensions occurred in the familybecause of it. Gurupal remarked that his motherfelt his impairment was because of sins in a pastlife:

“I think my mum found it very difficult toaccept the fact that I was disabled when Iwas born, because she thought it was a sortof punishment from God, like she had donesomething bad and that’s why she had adisabled son.”

He, however, did not agree with this:

“Look, I am what I am and God has mademe the way I am and there’s nothing I cando to change that, so we just accept me formyself and don’t sort of like bringingreligion into it because religion has gotnothing to do with it.”

Muslims usually took a more positive view.Impairment was seen as given by Allah, whowould also provide the resources to cope with it.This idea was not very often accepted completely.A few Muslim families expressed anger with Godfor ‘giving them’ a child with an impairment.Similar views were expressed by some Sikhfamilies, although being angry in the long termwas the exception rather than the rule.

The lack of religious knowledge among thedisabled young people with impairments seemed

Young people’s views on identity

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to be largely about the more formal rituals, suchas reading the Qur’an and praying. This put themat a disadvantage compared to their brothers andsisters. Twenty-eight-year-old Fatima, like someof the other young people, described howimpairment interfered with her ability to practisereligion:

“Well I can’t read the Namas [prayers], likeproperly, like standing up because I can’t sitdown on the floor, I find it difficult.”

Actually, no young person was completelyremoved from their parents’ religion, culture andethnicity. Some said that impairment had notinterfered with their religious education at all.Thirty-year-old Gurubax said he had learnedabout religion in the same way as his brothers;there had been no difference between them in hisview. Several young people said that practisingreligion was so important that disability wouldnot create any barriers. Those who drew strengthfrom religion held this view. Inzimam went tothe mosque when he was upset:

“I normally go to the mosque or read theQur’an or something like that, you know,which I usually do; my disability doesn’tcome into it.”

Most of the young people we interviewed had agood working knowledge of religion and cultureand were a part of their family’s religious andcultural lives. Although twenty-year-old Robinano longer went to the mosque because sheresented people staring at her – adult women’sattendance at a mosque is generally less commoncompared to men’s – she still felt that religionwas important to her:

“It’s just you’ve been born into the religion,that’s where your family background lies, soyes it is important to me.

Robina was able to learn about Islam by readingat home and talking with her family. Most youngpeople knew enough about their family’s religionand culture to feel that they did belong to theirreligious community as well as knowing how tobehave ‘appropriately’.

Social change

Learning about one type of culture or religionwhile living in another (sometimes hostile) cultureis a difficulty faced by people from minorityethnic groups. Young people may be open toinfluences which many parents would wish toprotect them from. This account by nineteen-year-old Nargis’ father was typical:

“I would rather they stick to our traditionalculture. I would rather have my daughterswear traditional dress because of ourculture.”

Young people with an impairment and theirbrothers and sisters usually respected theseattitudes, although they began to question someof their parents’ values, as they adopted moreWestern ones. This rarely led to direct conflict asthese other Western values were consideredalongside – and not instead of – their parents’values. What is of particular interest is that boththe young person and the rest of the family sawchange in similar ways. Working out changeinvolving religion, culture and ethnicity needs alot of understanding as well as social skills.Impairment could affect this, but notfundamentally, and young people did seem tohave enough understanding to accommodatethese various influences on their lives, withoutbeing too confrontational. So the young peoplewith impairments were not particularlydisadvantaged in this respect and had variousways of avoiding conflict with their parents. Thiswas usually done through interpreting culturalrules and avoiding open displays of offensivebehaviour: this might be seen as somethingcommon to keeping relationships going generally.

Conflicts that did arise between parents andyoung people were as much about understandingcultural values as a lack of knowledge of thesevalues. Some young people, for example,challenged their parents’ restrictions about clothesby arguing that these were based on ‘ethnicculture’ rather than on ‘religious values’. Thesedistinctions were seen as important and wereused to argue for relaxation of restrictions. Youngpeople and their brothers and sisters also had astrong interest in youth culture, but again oftenwithin the framework of their families, religionand culture. Modesty, for example, was valuedby many of the young women – irrespective of

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impairment – and offered another example ofhow well the parents had passed on their culture.Fatima (aged 28) knew that she should bemodest, but said this could be done with both‘traditional’ and western clothes. Her parentswere happy with this and Fatima successfullyresponded to their worries:

“No, I mean my mum and dad, they prefer ifwe wore traditional clothes at home, but ifwe’re going out to work, or going to collegeor university, they’ve never stopped uswearing trousers. But that doesn’t meanwe’d go and wear short skirts, things, youknow show our legs, sort of things. As longas we’re covered, they don’t mind.Otherwise, I think they would get too upset,my family.”

Twenty-eight-year-old Gurupal said that hisparents did not understand him, but added thatthey did not understand his brothers and sisterseither. He put this down to cultural differencesbetween young people and parents. The parents,he said, still held on to the ‘old ways of doingthings’. This caused tensions, but Gurupal hadenough skills to negotiate these tensions. He wasaware that his older brother had to go through thesame things with his parents, but pointed out thatbecoming independent was particularly difficultfor himself. His parents did not like him going toclubs and public houses, for example. First,because they felt that it was culturally wrong andsecond because they worried that his impairmentmade him at risk. Gurupal said:

“I really had to stamp my foot down andsay, ‘Mum, I respect your opinion and Iappreciate what you’re saying and I’mtaking this on board’, but I mean I can’t bestuck in the house for all of my life andstaring at four walls, I have to socialise andinteract with people, because that is theonly way I’m going to develop as a person.”

Gurupal’s experience showed how young peoplehad to engage with both the effects of disablingideas about them as well as cultural expectationswhen negotiating with their parents.

Gender and culture

Ideas about how men and women should behaveplayed an important part in how parents saw theirchildren’s friendships. They worried about theeffect of damage to their daughter’s reputation,for instance. Young women were seen by parentsas needing greater protection than men. Genderseemed more important than impairment inparents’ attempts to protect their children.Jagjeet’s mother summed up the concerns ofmany of them: “Sons are sons, they’re boys. Youdon’t worry about boys, do you, the same way?”The young women, themselves, recognised thesedifferences too.

Most respected their parents’ views but someyoung women – irrespective of impairment –were beginning to voice criticisms andcommented on the unfairness of such differenttreatment. Twenty-eight-year-old Fatima said herparents kept a closer eye on her because she wasa woman. Her brother with an impairment hadmore freedom:

“My brother’s got no pressure at all, I meanhe comes in and out, it’s like you don’t evenknow where he is, he could be anywhere.Whereas I go away for a minute and theywant to know where you are.”

She added that “in Asian families there was nosuch thing as equal opportunities” with regard togender. Waseem’s sister agreed and said that herfamily treated her differently to her brother:

“There is no problem if my brothers havegirlfriends. And I was like, ‘how come it’salright for him to go out with someone,when he’s a male, when it’s not fine for meto find someone out there’. I said, ‘Mum,you’re spoken like a typical Asian now and Ithought you didn’t have a backward view’....Since I’ve turned 16, it’s like most of theirattention has gone on me, more protectiveof me and I think maybe, I don’t know,something that Asian families go through,you know, when their daughters gets to thatage.”

Impairment did influence the families’ ideas aboutyoung men’s and women’s relationships. Youngdisabled men were given more concessions,sometimes almost as compensation for

Young people’s views on identity

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impairment. Threats to the reputations of theirdaughters with impairments, however, were dealtwith by restrictions on their access to the outsideworld. Female reputations were seen as moreeasily damaged and less easy to repair than malereputations within South Asian communities.Nineteen-year-old Nargis’ father did not like hisdaughter attending social clubs with otherdisabled people: “I don’t want her to go alongwith [the idea] that girls should have malefriends”. Young women with impairments tendedto be more isolated than young men in the samesituation.

Summary

This chapter explored how young people sawethnicity, religion and culture:

• Although impairment affected their religiousand cultural knowledge, it did not seem asimportant as the value placed on these thingsby the rest of the family. On the whole, ifparents stressed the importance of religion, sodid the young people and their brothers andsisters.

• Generally, the chapter shows how impairmentis only one part of a young person’s identity.Other social factors, including culture andreligion, being male or female and theexperience of racial discrimination influencedhow they experienced disability andimpairment.

• Young people felt that their parents were moreprotective of their daughters than their sonsand worried more about their daughters’reputations.

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3Views on marriage and family

“You know what grannies are like, alwaysnagging.”

This section is about views the people weinterviewed had on marriage and the family. Itincludes family obligations and how ideas aboutdisability and impairment are worked out withinthe family.

Part of the family

Some parents saw impairment as a tragedy thatmade their child more at risk than others.Parents, for example, could be ‘overprotective’,often underestimating their sons’ and daughters’abilities as well as the amount of control they hadover their lives. In fact, parents often feltresponsible for all aspects of their child’s life.They concentrated on markers which they saw as‘normal’ for their children: a good education;social skills; knowledge of their religion andculture; as well as having a job and gettingmarried. Parents worried about all their childrenbut were more concerned for their son ordaughter with an impairment because they sawthem as needing extra looking after. They alsowere aware of the changing nature of theproblems faced by young people as they gotolder. Parents expected to be involved in the lifeof their son or daughter who had an impairmentfar longer than they did for their other children.Such ideas sometimes set up tensions betweenthe young people and their parents. Nineteen-year-old Moeen’s mother summed up the views ofmany parents:

“I want him to go out, but ... I worry abouthim. I always think that something mighthappen to him.”

A particular worry mentioned by nearly all themothers and fathers was what would happen totheir son or daughter after their own deaths.Clearly this is a common worry among parents ofa son or daughter with a chronic illness ordisability – of all ethnic groups. The parentswhom we interviewed, however, did not worryabout their other children in the same way, itseemed, since they felt they would find it easierto get support, find a job and be financiallyindependent. Parents were concerned that theirchild with an impairment would not have thesame opportunities as the other children.Nagina’s mother felt extreme concern whenthinking about her daughter’s future:

“Sometimes I pray, ‘before I go, God, takeher first’ because I don’t want to leave herbehind me. I have six daughters, but whenthey get married, they have their own life,you know, they have their children, theirhusband, another life.”

These comments also reflect the different attitudesto young men and women. Young South Asianwomen, once married, may have fewresponsibilities towards their family of birth.Instead, they are regarded as members of theirhusband’s household. Having sons, however, didnot always reassure the parent that their childwith an impairment would be looked after in thefuture. Thirty-year-old Gurudev’s mother did notexpect his brothers or sisters to look after him:

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“Nowadays everyone is so busy with theirown lives, they’ve got no time for anybody,have they?”

Several other parents were concerned aboutchanges in the family obligations and contrastedunfavourably the present generations’ ‘moreWestern’ expectations with those of their owngenerations. Rabia’s father explained:

“Here children do not look after theirparents, let alone their sisters, do they?Don’t get me wrong, all her brothers andsisters, all would give their life for her, theylove her even more than us. But it’s not thesame as it used to be. Those from Pakistanwould look after people like Rabia. Peopleborn here are very reluctant to do that.”

Many parents expressed similar views. Some wereespecially pessimistic because their other sonsand daughters offered little current support. Thisdid not, they felt, bode well for the future.Moeen’s mother was disappointed about the roleof her other sons:

“Nowadays children won’t do what they aretold; they do what they want. Otherchildren help their parents, but they [hersons] don’t do anything.”

Not all parents, however, shared these anxieties.Many hoped their other children would continueto be involved in the care of their son or daughterwith an impairment. What did those brothers andsisters think? Twenty-six-year-old Hardeep’sbrother was one of the few we interviewed whofelt that his sister was not his responsibility. Mosthad a more ambivalent response. They were, forexample, aware of the difficulties of supportingtheir brothers or sisters themselves after they haveleft the family home to get married. Shushma’ssister said that she would be married soon andwas worried about who would then look after hersister when she left home. At present she wasresponsible for the daily care of her sister.Nonetheless, thirty-year-old Gurucharan’s brotherfelt that he would always have a duty to supportGurucharan:

“It’s been tough on us actually. It’s a lot ofheadache for us. We’re always there for himand we’ve always wanted to be there forhim.... We’re a close-knit family in the sensethat we’re always there. I know that he’d

do the same for me, if I were in thatsituation, so I couldn’t really turn away.These sorts of things, misfortunate thingscan happen to anyone.”

For many brothers and sisters, this was seen ascontinuation of the support they already gave.Like their parents, they felt that they had anobligation to support all their family. Twenty-eight-year-old Fatima’s sister remarked, “My mumdoes everything during the day, so we’ve got tocome home and at least help out”. Again, being ayoung woman was an important influence on thissense of obligation. Sisters were expected tohelp out more within the family than brothers.Fatima’s sister, for example, felt she was putunder more pressure by her family to look afterFatima than her brothers were.

Worrying about the future of their sons anddaughters who had impairments meant manyparents hoped that they could find a suitablemarriage partner to ‘look after’ their child,although they felt that this would be far fromstraightforward. Another strategy adopted byseveral parents was to encourage the youngperson towards greater independence. Nineteen-year-old Tahir’s mother said:

“I try to make him independent. I think thatis where a lot of mothers went wrong andthey give the child everything. If they don’tgive the child everything, they’ve got to goand get it and that encourages the child toget up and go.”

Many parents had to struggle with their ownnegative views of disability and this sometimesworked against the idea of independence for theirchild. It was common, for example, for manyfamilies to say that they tried to treat all theirchildren in the same way. Thirty-year-oldGurupal’s mother remarked:

“We have never treated him differently. Wejust treat him as normal, we never think ofhim as disabled, well yeah he is disabled tolook at but we are there to help him. Idon’t know, we always treat him the sameas others.”

Both young people and their brothers’ and sisters’accounts largely confirmed this approach. Parentsrealised that it did not always work, because theyfelt that they could not fully avoid the

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implications of their son’s or daughter’simpairment. Several parents were aware, forinstance, that they sometimes spent more timewith the young person with an impairment thanwith their other children. This often causedproblems. Nineteen-year-old Tahir’s motherremarked that in the past she focused too muchon her eldest son at the expense of his youngerbrothers and sisters:

“We wrapped him so much in cotton wool,we forgot about the other children and theother kids were left out and it’s not fair.They started arguing between themselves.There was jealousy.”

Brothers and sisters noticed this too and often feltthe brother or sister with the impairment was givenpreferential treatment. According to 19-year-oldNargis’ brother:

“I felt left out all the time, becauseeverybody cares for her more than me.Especially my dad, he always says Nargiscomes first.”

Most accepted this, although they admitted therewere times when they were resentful. They werealso aware of how their brother’s or sister’simpairment had had an impact on their own livesand the opportunities which were available tothem. Twenty-eight-year-old Fatima’s sister, forexample, sometimes felt angry when she thoughtabout how her sister’s impairment has affectedthe family. This sister particularly wanted toleave home and go to university; the family wereagainst this idea because they felt that she shouldstay at home and look after Fatima. The sister,however, kept her feelings about this hidden andeven felt guilty about having such thoughts at all.Twenty-three-year-old Gurudyal’s sister said shetried to support her brother and be positive, butadmitted that there were occasions when sheresented the time his parents give to her brother.Some brothers and sisters felt neglected. Jealousywas also a problem sometimes, as it is in mostfamilies, with or without family members withimpairment.

Impairment and relationships

The parents’ response to their child’s impairmentwas not necessarily related to their ethnicbackground. South Asian families seem to

subscribe to the same negative views ofimpairment held by white families. There wereloving relationships between young people andtheir families, however, despite these views. Thiswas true of both those still living at home andthose who lived away. Nasira praised her family:

“They help me a lot. And you know, they’lldo a lot for me. My family supports me100%. They make life easier for me. AndI’ve got a family; I don’t really needanybody else, do I? They care for me reallya lot.”

The families also emphasised their love for theyoung person. Tahir’s mother was very close toher son:

“If anything happens to him now, I don’tknow what I would do. I don’t. I would bereally lost. I really would be lost.”

Families and young people worked at getting onwell together and nearly all described asupportive family atmosphere. As a result, somefamilies felt that their child’s impairment hadactually brought them closer together.

Such loving relationships were usually reflected inthe families’ attitude to looking after their relative.Parents of young people expressed a sense oflove, but also of responsibility and moralobligation. Tahir’s mother said:

“I’ve been coping for six years. It’s difficultto go through. Don’t ask me where I’ve gotthe strength, I don’t know. I just hope I’vegot the strength to carry on. Sometimes I’vefelt like, forget him, run away, but you can’t,you cannot run away from it. It isimpossible. They are your children and youhave to look after them.”

As in other relationships, everyday care usuallyfell to the mother, with the fathers undertakingother responsibilities. These good relationshipsdid not, however, diminish the impact of supporton the parents’ life. Nineteen-year-old Nargis’father described how having a child with animpairment affected family life:

“We’re not allowed to get on with what wewant to do. But we try and give her asmuch as we can.”

Views on marriage and family

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Nagina’s mother described a good relationshipwith her ‘special’ daughter but still felt that therewere times when she found the pressure of caringwas too much. Other parents shared this view.Caring had a big impact on parents’ own(especially the mothers’) lives. At times, theyfound caring physically hard, emotionally difficultand restricting their own social life and chances towork outside the home. These South Asianparents faced similar difficulties in providingpractical, social and financial support to any otherfamilies in the same situation.

The young people with impairments, as well astheir brothers and sisters, recognised thepressures faced by their parents. The youngpeople in particular were aware of how muchtheir parents had to go through and recognisedthat their mother and father sometimes had asense of sadness and disappointment at having achild with an impairment. This seemed toemphasise a negative view of disability. Someyoung people expressed a sense of guilt formaking life so difficult for their parents.Nineteen-year-old Nargis said it ‘is not right’ thather parents still have to look after her. Moeenwas aware of tensions between his mother andfather and believes that the pressures of lookingafter him directly contribute to their arguments.Twenty-two-year-old Jamila was aware of howupset her mother became and this worried her:

“It’s hard for mum to open up because shereally gets upset and like she’ll have tears inher eyes. It’s really hard for her. But thething is she’s more upset than I am. I’mused to it.”

Parents, however, remained vital allies for theirchildren, offering encouragement and support.This meant there was a constant tension in theirstories – similar to those described by their sonsand daughters. As they tried to make sense oftheir own sadness at having a son or daughterwith an impairment, they also wanted to makethe most of the opportunities available to thatyoung person and to have faith in their futures.Working out these tensions explains why some ofthe families’ responses to disability did shift andchange, at some times appearing contradictory. Itexplains, for instance, why some parents’ ways ofovercoming the disadvantages faced by their sonor daughter might not always have been in theyoung person’s best interests (despite their bestintentions). Most parents attempted to adjust to

impairment by treating the children ‘as if theywere normal’. Such pressure to be normalsometimes ignores the reality of the impairment.This may also have benefits though. Indeedmany young people said that this approachhelped them to feel good about themselves.However, it did mean that parents sometimesfailed to recognise the value of their childrenmeeting other people with impairments or joiningdisabled groups.

The extended family

A stereotype which was challenged by theproject’s findings was that of the necessarilysupportive extended South Asian family. Parentsoften criticised their extended family for havingnegative ideas about disability (despite thesebeing similar to their own on some occasions).The extended family was seen as creating barriersfor all of them. Young people and their sistersand brothers shared this opinion. These viewswithin South Asian communities are perhaps nodifferent from those of the general population.The study presented a picture of the extendedfamily as a mixed blessing, sometimes oppressive,like a moral police force but providing littlepractical support. Shehnaz commented onanother disadvantage of having relatives livingclose by: “A nightmare, I don’t like it. It’s tooclose, too close for comfort”. Problems with theextended family were obviously not just aconsequence of the child’s impairment. Nargisand her sister’s account of their relationship withtheir grandmother could be taken from any studyon family relationships. Nineteen-year-old Nargiscommented:

“Grandma tells dad what to do. I really getmad at that. I don’t know if she does itunintentionally, but it’s not right. She getson my nerves sometimes. You know whatgrannies are like, always nagging.”

The extended family, however, could be a greathelp and some families spoke highly of suchcontact, praising the material, social andemotional help that they received. This support,however, was often greater in the early days ofthe impairment. Some families remarked thatsuch support rarely continued and several parentsfelt that they had been left alone to look aftertheir child. This general lack of support createdtensions and led several families to contrast the

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unfavourable response of the extended family inthe UK with the (perhaps mythical) attitudes intheir homeland. Isma’s father said:

“In Pakistan, they all think that our relativesin this country help us a lot, but they don’t.When any family is in hard times, nobodywants to know at all.”

The extended family could have otherdisadvantages. Those we talked to mentionedhow their families often discriminated againstthem and how they found themselves sociallyisolated and left out of things. Families with achild with an impairment, for example, were notalways welcome at family gatherings. Sushma’ssister described a recent visit to her aunt’s house:

“Everyone else is scared that she mightbreak something and so will anticipate theworse and she went to my aunt’s house theother day and everyone like said, ‘why didyou bring her, why did you bring her?’.”

When families did attend such social events theyoften had to face negative comments. Youngpeople with impairments, their parents and sistersand brothers wished that the extended familieswere more accommodating and understanding.Their lack of understanding caused sadness, angerand resentment.

Finding a marriage partner

Finding a job, or marrying or setting up homewere seen as important symbols of growing up.Finding a suitable marriage partner can be aworry for parents and young people – with orwithout impairment. Parents did comment onhow much more difficult it would be to find amarriage partner for their disabled child,compared to their other children. Both youngpeople and their parents emphasised theimportance of finding a partner who could offersupport and care, but the difficulties in realisingthis were often a source of great sadness. Severalyoung people were pessimistic. Twenty-seven-year-old Waheed wanted a wife but worried thathe would end up alone:

“Obviously when my younger sister getsmarried, obviously she’ll have to leave andmy parents, my father is already 63 and my

mum is 50 something and when they passaway, I’ll be on my own and I hate to bealone. And that really does choke mesometimes.”

He added that his father was reluctant toapproach other family members and ask aboutpotential marriage partners:

“He thinks they will say, ‘You know yourson is disabled’ and you know he’s scaredthey might, you know, make fun of him andsay ‘why do this?’ You know, ‘Your son isdisabled, are you stupid or what?’ But deepdown, he knows that they’ll definitelyrefuse, so he goes, why bother to ask, youknow.”

Nineteen-year-old Nargis’ father echoed this bysaying that it will take time to find his daughter amarriage partner: “If she was normal, she wouldbe married by now”. Nineteen-year-old Shakeelshared similar feelings and remarked that he willnever be able to get married:

“It falls into the category of things I cannotdo. Because I’m too ill, that’s why, even ifthere was someone who wanted to marryme. I wouldn’t be able to get married tothem because I wouldn’t be able to lookafter them, they would probably have to endup looking after me.”

Shakeel added that he tried not to dwell on this,as the thought of being alone depressed him:

“Well you do think about them things, butthen if I think about them, I get depressedyou see, so I try not to think about them.”

Altogether, 11 of the young people we talked towere or had been married (including two whowere now divorced). The experiences of thosewho had been married reflected the concerns ofthe unmarried young people and their parents.Thirty-year-old Gurudev said that his recentdivorce was because his wife could not come toterms with his impairment, caused by a brainhaemorrhage. Five other young people said theywere on the verge of separation. Both Waseem(aged 27) and Gurucharan (aged 30) felt theywere a ‘burden’ on their wives and unable tosupport their families in the way in which theyfelt that they should. To this extent, they sawimpairment as a barrier to doing something that


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they had expected to – to have a successfulmarried life. Impairment did not always havesuch a direct impact on relationships, however.Twenty-seven-year-old Hardeep rushed intomarriage because she was worried that no onewould want to marry her. She then regretted it,as she did not get on with her husband. Therewas no doubt, she said, that her impairment madeher relationship with her husband more difficult,but she went on to say that that was not the ‘realreason’ for tensions in their relationship. It wassimply that they shared different views on life andso were constantly arguing. Similarly, 30-year-oldJaswant said that she divorced her husband, notbecause of her multiple sclerosis, but because herhusband had a ‘controlling’ personality and oftenbullied her. The experience of Jaswant andHardeep showed that although impairment hadan effect on young people’s relationships, it wasnot the only cause of tensions and that theseyoung people experienced similar relationshipproblems to all young people.

Despite some concerns, marriage still remainedimportant to these young people and theirfamilies. This reflected the cultural importance ofmarriage in South Asian communities generallyand impairment did not necessarily underminethis. Parents still wanted to ensure that, wherepossible, their sons and daughters withimpairments had similar opportunities to theirother children. The only two people who livedalone, Gurudev and Jaswant, had been divorced.Usually, however, the idea of livingindependently of the family home was rarelyconsidered by the young people. They oftenexplained this in terms of cultural expectations,although mentioning the limitations imposed bytheir impairment as well. Impairment or disabilitydid indeed seem to affect the marriagenegotiations, as differences emerged between theexpectations of the young person and theirbrothers and sisters. As part of this, youngpeople often felt they had to accept second bestbecause of their impairment and believed theothers in the family were more likely to find moresuitable partners. Twenty-six-year-old Hardeepsaid that her sister had got the better husband:

“Compared to my husband, he’s (her sister’shusband) much cleverer, he speaks Englishand everything, he’s more westernised. YesI think I could have done better. I think theonly reason I ended up with my husband isbecause of my disability. I ended up with

him because of my leg. I know I could’vedone better.”

Eight young people had married after becomingimpaired. (The other three were married beforethe impairment.) In all but one case, theirmarriage partners came from India or Pakistan.Both parents and young people felt that it waseasier to bring marriage partners from overseasrather than try to find marriage partners in theUK. Those who were considering marriage alsosaid this. By comparison, their sisters andbrothers seemed more likely to marry someonefrom the UK. There were various reasons givenfor seeking overseas marriage partners and mostof the partners did seem to have been aware ofthe young person’s impairment. Partners fromoverseas were seen as having lower expectationsand so being more willing to come to the UK andlook after someone. This is perhaps ironic giventhat some of the young people also felt that SouthAsian cultures were too ‘backward looking’,especially about disability. Young people andtheir parents also remarked that by consideringmarriage partners from South Asia they wereoffering their prospective partners the chance ofsettling in the UK. This, however, could have itsdisadvantages. Several young people and theirparents were concerned that prospective partnerswere using marriage as an excuse to enter the UKand had no intention of trying to make themarriage work. Several young women, forinstance, could tell of cases which confirmed theirfears about this happening.

Being a woman also affected how the parents andyoung people felt about finding a suitablemarriage partner. In some ways, women wereseen to face greater difficulties because of culturalideas about housework. Impairment was seen asaffecting domestic work. This is why Fatima,aged 28 years, said that Asian women withimpairments had a harder life than men:

“I don’t know ... especially in our culture.Because you know, you have all thesearranged marriages and it’s like the guycomes to see you and obviously, like anAsian guy, he always expects a lot from hiswife – he expects her to do the cooking, thecleaning and stuff like that and you’ve gotsomeone with arthritis, you can’t really, canyou?”

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Twenty-two-year-old Jamila similarly does notthink she would be able to cope with married life,as she could not look after her husband properly.

The parents’ part in arranging marriages wasvalued by their sons and daughters, as were ideasof family obligations. Nasira felt lucky to bemarried:

“I mean a lot of people wouldn’t have givenme a marriage partner but because it wasmy dad’s brother’s son he therefore agreedto marry me and I’ve been married for along time now, but I know that a lot of girlswouldn’t get married because nobody wouldgive them a man to marry.”

Finding marriage partners seemed to be differentfor women and men. Men were not only morelikely to be married than women; they were alsomore likely to be engaged in the negotiationsabout marriage. Men, however, did faceproblems in fulfilling their role as ‘breadwinners’and often felt that they were a ‘burden’ on theirwives. Thirty-year-old Gurucharan, who becamedisabled because of a road accident, felt he wasfailing as a father and a husband:

“When you get disabled, it’s not just that itaffects you. You’ve got a family; you can’tgive them attention, like you’re supposedto.”

Gurucharan specifically felt he had become a‘burden’ on his wife: “She’s always mainlystressed out. She’s got no time for herself”.

Do these concerns about finding suitable marriagepartners suggest that families give young peoplewith impairments greater choice whenconsidering potential marriage partners? Or is theway of negotiating the marriage – and all theexpectations involved – the same for the youngpeople and their sisters and brothers? All of them,it seemed, would take some part in marriagenegotiations. Whatever changes impairmentacceptability brings to this process, arrangementsremained the same for all the family members.Most young people accepted this as a part ofaccepting their family’s culture. Only three of theyoung disabled people considered marrying‘outside’ their culture. Interestingly, all three ofthese had a strong sense of identity as a disabledperson. They emphasised the importance ofmarrying someone who could ‘cope’ with their

disability; a feeling shared by one of the parents.Jagjeet’s mother, for example, was concerned toensure her daughter married a husband whowould look after her:

“I would never arrange [a marriage] for her,because I, then that would be unfairbecause we could find her somebody butwe do not know if he will care for her. Soit’s best she found somebody herself. Imean he does not have to be Indian. I won’tmind as long as I knew genuinely in hisheart that he would really look after her.”

Summary

This chapter explored how young people saw thefamily and the prospect of marriage:

• Disability and impairment may be interpretedwithin the family in negative terms.

• This means there is often tension withinfamilies on this topic.

• It does not stop the young people fromvaluing the good relationships which theyshare with their families.

• Finding a partner, however, was part of life forthe young people which they had to negotiatejust as their brothers and sisters did. Theywere aware, however, that they would havemore difficulty than their siblings in finding amarriage partner because of their impairment.


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4Disabling barriers and racismat work and at home

“I’ll get angry, right, if they put me in cottonwool or something like that, if they watchme every minute.”

The way young people saw the social effects ofdisability showed there was more to their livesthan having an impairment. For example, theyalso experienced racism.

Young people had their own ideas about the livesthey wanted to lead. Part of this was taking onother people’s attitudes to disability. Thisincluded having to deal with the way in whichtheir own parents treated them. Sometimes theyfelt that their parents had very negative views ofdisability, which reflected those of wider society.However, the young people, coped well withtheir parents views – it was a constantly changingprocess but they seemed able to recognise thesupport, care and love they received as well asthe sometimes low expectations held about theirabilities.

Sometimes young people shared their parents’negative views of disability. They often acceptedtheir parents’ ideas about their being at risk andtended to see impairment as a personal tragedy.These feelings seemed stronger among those whohad become impaired as a result of illness or anaccident. Thirty-year-old Gurucharan had severephysical impairments following a car accident:

“Like I say, my world’s turned upside down.It’s just a 100% different. I never envisagedlife like this. All I can say is everythingchanged for me.... A lot of people say thatI’m not the same person as before.”

His own view was reinforced by those aroundhim.

Young people often had to confront those barriersoutside as well as within their family. Tahir, aged19, was generally pleased with how his familytreated him: “They just treat me as normal andstuff like that”, although he felt that his familywas “just a bit ashamed of themselves” for havinga disabled child. This in turn makes him feelashamed. Nineteen-year-old Shakeel felt differentfrom his brother and sister: “You think you’ve leteveryone down, that you’re odd”. Many youngpeople felt isolated and undervalued within thefamily. Some, for instance, complained thatdespite the love shown by their families there wasoften little understanding of what they had to gothrough. Shakeel described his family assupportive but added:

“No one can understand you, even yourown mother can’t even understand how youfeel, only you can, you know, how you feel.She obviously will hurt the most but she cannever understand, no one can understandhow you feel.”

Many young people felt that their parents’ poorview of disability drained away their ownconfidence. Nineteen-year-old Nargis said, “Myfamily thinks I am useless; they’re always puttingmy confidence down. That’s why I’m a bitunconfident.”

The disabled young people compared theirexperience with those of their brothers and sistersand felt that their parents treated the others morefavourably. They commented that their parentsgave the non-disabled children greater freedom(although, as we saw, brothers and sistersdisagreed, often resenting the time that theirparents spent with the disabled brother or sister).For the young person, there were also times

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when they felt that disability changed the usualage- and gender-related expectations; the roleswhich they would usually have taken werepassed on to the other brothers and sisters.Young people resented such ‘lack of respect’, aterm used repeatedly to describe their treatmentby both their own family and other people. Somebrothers and sisters, however, were sensitive tothis. The younger brother of twenty-three-year-old Gurudyal said that he sometimes swappedroles with his brother: “Sometimes I am theyounger, sometimes I am the older”. He addedthat he was aware of how Gurudyal wasprevented from assuming certain roles in thefamily because of his impairment – even withgood intentions on the part of the rest of thefamily:

“I’m not thinking about marriage. Like inmy family, the eldest gets married first. AndI’m still trapped in that kind of, you know,thing, that the oldest gets married first. And,you know, I don’t really want to get marriedfirst and that’s going to be a bit of aproblem. Because if I get married he’sgoing to think, ‘Oh I’m not married now’and he’s going to say, he is going to startthinking.”

The young people with impairments mentionedother worries about not being able to carry outfamily responsibilities, which made them feeluseless. Some young people, for example, feltthat they could not live up to what was expectedof being a wife or husband. Several youngwomen also felt they could not help their motherswith domestic work. Men worried about theirrole as ‘breadwinners’. Some of the olderrespondents were worried about not being able tosupport their parents as they grew older.Waheed, aged 27 years, remarked:

“If I were an able-bodied person, when youget older, earning quite a lot of money, Iwould be able to look after them.... Isometimes do feel just a bit sad, but youknow like I would not be able to look afterthem, you know, like I would have done if Ihad been an able-bodied person. Ourculture is that the boy looks after his parentsand his wife obviously.”

Young people particularly disliked beingdependent on other members of the family. Theyfelt that this was ‘not right’, especially as they

grew older. To this extent, young people directlycompared their experience of ‘growing up’ withthat of their brothers and sisters. They sometimesfelt left out within the family as well as outside itin their social life.

‘Overprotection’

Feeling overprotected caused tension betweenyoung people and their parents, reflecting someof the earlier difficulties mentioned. This went onthroughout the young person’s life. They sawtheir parents as feeling the need to protect themfrom the effects (as they saw them) of impairmentand worrying about problems they might facewhile ‘growing up’. Their parents often talked ofthe young person’s well-being in terms ofreducing risk. They recognised that they wereoverprotective sometimes but believed that theyhad no alternative. Several parents regretted nothaving given their children scope to develop theirskills, especially as they got older and they sawthe value of independence. Jagjeet’s mothervoiced a common dilemma faced by parents. Shehad raised all her children to be relativelyindependent, but she had failed to do this withher disabled daughter:

“I made a big mistake by doing everythingfor her, so now, it’s not her fault, it’s all myfault that I’ve made it too easy for her.”

Generally the young people themselves felt thattheir parents were overprotective, especiallywhen they compared their experiences to those oftheir brothers and sisters. Young people oftensaw their parents as overreacting to thedifficulties they faced and, as they grew up withtheir own ideas, they questioned their parents’views of what was in their best interests. Otherpeople of their age regarded South Asian parents’concerns as restrictive; the young people weinterviewed felt it set them apart from others evenmore. They felt that they were being treated aschildren and they complained that their parentssometimes only saw their impairment and not justthem as young adults. Nineteen-year-old Shakeelremarked: “I wish she [her mother] would likeback off or something, you know give me morespace”. Twenty-six-year-old Hardeep Kaurdescribed a similar problem. She said that herfamily was supportive, although they sometimesirritated her by worrying too much:

Disabling barriers and racism at work and at home

18


“I’ll get angry, right, if they put me in cottonwool or something like that, if they watchme every minute.”

They describe feeling that parents laid downrestrictions rather than discussing them, whichmade it more difficult for the young person toaccept. Challenging this sense of overprotectionwas not easy and the young people often feltguilty about upsetting their parents. Twenty-eight-year-old Fatima, for instance, said she didnot know what she would do without her family,but added that this sometimes created problems:

“Sometimes it’s good, you know, you get allthe attention and you get everything donefor you and then at other times, you wishyou know, they wouldn’t go on about it.”

She was aware of being dependent at the sametime as wanting to be independent.

Overprotection can be a common feature of anyparent and child relationship. It may also be partof a parent’s reaction to their child’s growingsense of independence as well as a response totheir son’s or daughter’s impairment. The parents’disabilist responses may be coming from theattitudes and ideas about disability which they seeall around them. Comparing the accounts of theyoung people and their brothers and sistersconfirmed that they did feel that they were treateddifferently. Waheed, aged 27, was aware that hisparents treated him differently from his sister.This, however, may have been partly because hewas an only son:

“I think if I had another brother, then theymight not treat me like they do now. Part ofit is because I’m disabled, but the other partis because I am the only one [son].”

Twenty-two-year-old Jamila said her parents wereprotective but she did not relate it to disability:

“I’m the youngest in the family so it’s like,you know I’m their little baby, you knowand they protect me too much.”

Several young people with impairment felt thattheir parents were responding quite naturally tothe risks associated with ‘growing up’ and thattheir parents had similar concerns for their otherchildren. Being male or female as much asimpairment also seemed to affect their response

to their children’s independence. Parents weremore protective of their daughters than their sonsshowing that impairment was only one importantpart of what is considered usual for someone oftheir own age, gender and social class.

The experience of twenty-eight-year-old Gurupalshowed how complicated transition can be foryoung people. Like many young people he was‘growing up’ disabled, with a sense of familyreligion and ethnicity, but in a Western cultureand religion. Gurupal had to argue for greaterindependence:

“I think my disability is restricting, becausethey [parents] are more protective of what Ido.”

He specifically described his parents as toocontrolling:

“They seem very reluctant to let me havemy freedom and sort of let me go in thatrespect. And I just want them to be moreunderstanding and allow me to be my ownperson really.”

He added, however, that his brother had also hadproblems about being independent. Gurupal felthis parents had different expectations of him thanhis brothers and sisters:

“I mean I love my family because they’vebeen there and done everything for me, buttheir philosophies differ so much from whatI think and I feel. I mean growing up in thiscountry, I’ve learnt to accept their odd waysof doing things, but they were born andraised in a different culture, so theirtraditions and the way they do thingsdifferent and I mean though they’re trying toadapt and change to the way of living in thecountry. I think they find it hard whereasI’m born and raised here, so I haven’t gotany difficulty in adapting.”

He had both insight and understanding of hisparents’ position.

Seeing disability within this broader context isalso important in understanding how youngpeople maintain a positive view of themselves.They seemed to see disability and the family aspart of a whole picture of relationships.Nineteen-year-old Shakeel was aware of how

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much his family did for him, but at the same timehe pointed out that they argued just like any otherfamily:

“I don’t know if I would be able to copewithout my family. I need my family; Ithink definitely but yeah we fall out, youknow, family things.”

This way of looking at things also enabled theyoung people to play their part in the family,rather then just being a person with animpairment. It helped young people gain statusby living up to the expectations associated withtheir role as a family member. There were manyexamples of them doing this. Young people inthis study, for instance, were proud to supporttheir parents and offer advice to other familymembers in the same way that Bignall and Butt(2000) found that driving a car was a useful rolefor young disabled people within their families.

Young people’s views on disability

The negative family attitudes which the youngpeople found disabling were also experiencedoutside the home. Thirty-year-old Gurucharanremarked:

“All I get from people is that they pity metype of thing, you know when they give yousympathy.”

These attitudes annoyed him and showed howthey made the young people feel devalued.Twenty-seven-year-old Waheed’s account wastypical:

“I mean I am not an able-bodied person butI don’t feel bad about that. You know I feelthat they [other people] treat you, they makeyour life just a little bit harder than actuallywhat it is.”

Robina, aged 27, agreed:

“The worst aspect is that people do notunderstand what makes your life difficult,but it’s their kind of ignorance that annoysyou sometimes and it gets you upset.”

The young people with impairment felt that theymissed opportunities and often compared

themselves to their brothers and sisters. Theirideas about getting married as mentioned earliershowed this. Education and work were anothersource of worry, particularly as they grew older.Feeling isolated was generally a problem for theyoung people we interviewed. Making friendswas seen as part of being young and theyidentified with the popular images of fashion, filmand TV and music. These symbols of youthculture as well as the mundane realities of school,work and home life were all important as abackground to ‘growing up’. Friends and outsidecontacts helped them to feel good aboutthemselves. They wanted to meet other youngpeople generally, not just young people withimpairments. Disability, however, could limit theopportunities for such meetings and added to theyoung people’s sense of being alone. This was incontrast to the experience of their non-disabledbrothers and sisters, who, by and large, had widerand more frequent social contacts. Jagjeetcontrasted her experience with that of her able-bodied brother:

“He can go where he wants because he ain’tgot no problem. I have to think of stepsand stuff like, and toilet, but he doesn’t haveto worry about it because he is alright andhe can take himself. I can’t take myself.That really annoys me.”

Eleven of the young people could describe few orno friendships beyond family life. In contrast,their brothers and sisters seemed to have no suchproblems in having a social life. Only two youngpeople, Nargis (19 years old) and Shehnaz (29years old), had the sort of social groups that theymight have expected at their own age. Nineteen-year-old Shakeel was asked about what he did inhis spare time. His response summed up thefeelings of many other disabled young people:“Spare time? I think everyday is spare time forme”. Shakeel commented that he could not keepup with his friends and therefore did not go outwith them: “They got their own lives to live”.Nasira found it difficult to make friends:

“I don’t have any friends because I don’t goanywhere, therefore I don’t have anyfriends. They don’t come around becauseI’m disabled, you see, they don’t want toknow me.”


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Twenty-seven-year-old Waseem felt angry andbitter about how his friends had treated him sincehe had become disabled:

“People used to know me, people used tovisit me, they have all forgotten me. They allforget me.”

Many of the young people and their familiesmade a distinction between ‘white’ people’sattitudes to disability and those of South Asiancommunities. Gurudev’s mother, for instance,said that her son used to have more friends:

“It’s just that our people are more scared ofthese things. If someone is disabled orsomething, our people are scared of them,rather than going up to talk to them andthings like that. Our people are scared,white people just come and talk to him. Itmakes a difference.”

Other parents and young people felt disablistattitudes had little to do with ethnic background.Surinder’s mother, for instance, made nodistinction between the white or South Asiancommunity. She found them both to be equallydismissive and hostile to her family.

Dealing with discrimination

These examples of discrimination showed howthe young people with impairment explainedother people’s behaviour in terms of the barrierswhich disabled them. Few young peoplediscussed disability in a directly political way,however. Instead, they had a general view thatthey were missing out on opportunities, not justbecause of the practical limitations of impairmentbut also because of the insensitive attitudes ofothers which they felt held them back from doingwhat they wanted.

Some young people did see disability in apositive way, however, offering pride andresistance with which to fight against suchnegative views of disability. Twenty-eight-year-oldGurupal reflected on this discrimination:

“There’s a lot of talented disabled people,who have got the ability to work and I thinkit’s important that we’re given theopportunity to showcase our abilities....I don’t think of myself as disabled. It’s

society who’s disabled by not enabling meto do this stuff. The most difficulty Iexperienced is through not being able toaccess buildings properly, not being able toget where I want to go because the facilitiesare not there to cater for me, so that’s whereI experience more discrimination really.”

Twenty-two-year-old Jamila commented on theimportance of how she saw herself: “I don’t thinknegatively about myself. I think positive aboutmyself”. Contact with disabled people, as well asexposure to disability politics, helped supportsuch views. Jagjeet explained:

“I find it easier to talk to [disabled people],because they are in a wheelchair, they knowwhat it’s like, it’s brilliant because I find I’mmore confident there.”

Three young people, Shehnaz, Jaswant andGurudev, were involved in organising activitiesfor other disabled young people. All threestressed how important it was to meet others whocould understand ‘what you are going through’,especially since they felt that their own families,despite their love and care, could not offer suchunderstanding. These meetings also helped theyoung people to find out how to get in touchwith services and the best ways of using theresources available to them. Such contact withothers had helped Gurudev make sense ofdisability. He said:

“Disability carries a whole series ofmeanings, like sort of cut off from choices,your life, you are pigeon-holed.”

Not everyone had access to these networks. Witha few exceptions, even those who attended a daycentre, where they met other disabled people, didnot describe any sense of solidarity about beingtogether. If anything they distanced themselves,comparing their situation to others, sometimesgrateful that their situation was better, sometimesdepressed because they felt that they had moredifficulties than other disabled people. Someyoung people, although being aware of thedisadvantages they faced, did not describe thesedisadvantages and discrimination in a politicalway.

The families’ emphasis on trying to get the bestfor the young person with an impairment didmean, however, that they had some sympathy

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with the social effects of disability. They did notalways use words like ‘social model of disability’,but they were aware of how society’s failure toaccommodate difference restricted theopportunities available to their child and of howthey were ‘disabled’ by the response of others.Shushma’s sister remarked that her brother wasneglected by society:

“I don’t think enough provisions are made tomake their quality of life better. It is simplya lack of understanding, people notaccommodating.”

Tahir’s mother thought that the disadvantagesfaced by her nineteen-year-old son were madeworse by other people’s attitudes. She began bysaying how her son had little social life:

“He gets upset that he is not like others. Hesaid ‘I’ve nothing to get up for’. He didn’twant to be bothered. Why should he getup? ‘I’ve nothing to live for’.”

She was not surprised, however, by her son’sresponse:

“Because when he goes out, they call him spasticand I think it is the most horrible word, ‘Oh lookat the spastic in the chair’. When he goes outpeople keep staring at him. It hurts him verybad.”

Racism and disability

Culture can offer a chance to belong and can bepolitically important. The sense of beingdifferent, of experiencing disability discriminationand racism influenced how the South Asian youngpeople we talked to made sense of their lives. Toa large extent this discrimination happened withor without impairment. Nineteen-year-old Robinawas one of the many young people who hadexperienced racism:

“You get called Paki and things. It’s notmuch more than anybody else would get Ithink. A lot of Asian people suffer that. Imean everybody comes across that at onepoint or another.”

Waheed (aged 27 years) reflected on hisexperience of school: “They would call you Pakiand why don’t you go back where you come

from?” Parents too were aware of thisdiscrimination.

Young people’s views on work

Although access to work may be seen as acommon expectation for young adults, only six ofthe young people were in full-time work. Theirbrothers and sisters were more likely to beworking and also to have better opportunities.Young people frequently compared their ownsituation with that of the rest of their family andfelt that disability was one of the main reasons forany difference. Twenty-two-year-old Azharreflected on the problems of finding a job andsuggested that people “don’t want a disabledperson working for [them]”. Nineteen-year-oldShakeel was aware that his impairment wouldmake it difficult for him to get a job: “Theemployed will think this guy should be in care orsomething. They think I will not fit in”. Theywere also aware that racism played its part.Nineteen-year-old Sohail was pessimistic aboutfuture employment because he was both Asianand disabled: “My cousins, they can’t get a job, soit would be harder for me”. Thirty-year-oldGurubax agreed:

“I think at the end of the day you will haveproblems with the colour of your skin.That’s a big problem, that on top of mydisability. It does not make things easier.”

Those who did work outside the home describedvarious problems such as unhelpful workmates,teasing and cruel comments. The experience oftwenty-two-year-old Afzar, for example, describedthe discrimination he faced at work:

“They say I should stay at home. I don’tknow what’s going on in their heads. Theyprobably are saying what’s that guy doingworking here, you know. I was workingFriday and this guy came up to me and said,‘What are you doing working here? Youshould be claiming benefits’ and that.”

Young people also found it difficult to get on atwork, often because of the negative way in whichother people saw impairment. Twenty-eight-year-old Gurupal was a journalist, but wanted to domore presenting work:


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“It was very frustrating because I knew Ihad the ability to do the job. I had the talentbut it was just the fact that I was physicallyunable to do it that prevented me frompursuing it further. When you see apresenter on television, he’s very wellgroomed and he’s very good looking andhe’s perfect. When a person is on televisionand he’s in a wheelchair, people will be putoff by seeing a disabled person.”

There was very little formal support to helpyoung people to find work. Once they had leftschool, most young people felt that they wereforgotten about. Some of them relied on theirfamilies for support and encouragement. Somefamilies felt that there should be more help forthe young people with impairment and criticisedthe other people’s poor expectations of what theycould do. Tahir’s mother said:

“I hope that there’s somebody out there thatdoes listen to him and give him a chance toget on with it. All these disabled people,surely they don’t want to sit home the restof their life?”

Other families were less encouraging. Theythemselves had negative views about impairmentso some of them had low expectations of theirchildren. Jagjeet, for instance, wanted to work inan office and had clear ideas about it: “I want tofind a job, to work in an office, to be a secretary”.Her mother, however, remarked, “She will not beable to work for anybody. She won’t be able toget around much”.

Summary

Young people’s views of themselves wereaffected by the discrimination they experienced,which stopped them doing what they wanted todo:

• South Asian young people experienceddisability discrimination in a similar way tothat described by white young people.

• These negative views of impairment affectedhow they saw themselves.

• Some young people were becoming aware ofhow these barriers were preventing them fromdoing the things that they wanted to.

• They experienced racism at work and in theoutside world generally.

• They also felt discriminated against at homebecause of disability.

• Young people saw being impaired as only onepart of their identity. Being young, male orfemale, a part of their culture and religion andpart of their families were seen as just asimportant.

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5Using the services

“They [teachers] used to say, ‘oh you can’ttalk properly’ … but I used to think sodthem!”

One of the key things young people mentionedwas how they dealt with things as their needschanged. They had to deal with ‘growing up’ justas their brothers and sisters did. Leaving schooland finding work was part of that transition, aswas learning to deal with social and healthservices as a young adult.

Education

Education is difficult for some young people withimpairments of all ethnicities. As well as formaleducation, school offers a chance to make friendsand meet people and enjoy yourself whilelearning new skills. Young people withimpairments may lose out academically as well associally. The academic level of ‘special’ provisionmay be poor, and the experience of thoseinterviewed in our study supported this view.

The young people with impairments inmainstream schools found it hard to be positiveabout themselves, saying that they felt left outand undervalued because of their disability. Theyalso felt that teachers thought that they wereinferior to others without impairments. Manycomplained of being ‘written off’ by teachers.Nasira remarked:

“They [teachers] weren’t interested in yourwork. If they wanted you to study, it wasup to you, not to them.”

She contrasted this with the support given toothers in the class, who were not disabled.Twenty-two-year-old Jamila similarly describedhow she had difficulty in convincing her teachersto let her take GCSE exams:

“I had to fight like, to get what I wanted. Soit was quite a struggle. They [teachers]discouraged me: ‘You’ll have difficultiesdoing some things because of yourdisability’. I had to argue with them all thetime: ‘No, it won’t put me off, because I’mdetermined to do this’.”

Eventually with her parents’ help, she was given athree months’ trial by the school to see if shecould cope with the work. This provedsuccessful and she was allowed to complete herGCSE courses.

Often there were not many other children withimpairments at mainstream schools so the youngpeople were mixing largely with non-impairedchildren. This meant that they then had access tomainstream youth culture. Sometimes, however,this contact was negative in terms of disability.Many young people described how they wereteased at school, and were left feeling hurt andangry. Twenty-seven-year-old Robina explained:

“It’s hard for you to understand why you’redifferent and it’s your fault, but these kidspicking on you as well to add to that painfor you makes it really unhappy for yousometimes.”

Being isolated at school was a problem for manyyoung people, as Waheed, aged 27 years,remarked:

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“The able-bodied people don’t treat me asnormal. And making friends, that was veryhard. I felt lonely sometimes.”

This kind of experience affected how youngpeople felt about themselves and theycommented on how hard it was to be confident.Nineteen-year-old Nargis, who is now atuniversity, doubted that she would do sufficientlywell in her GCSEs and ‘A’ levels to gain universityentrance. No one at the school encouraged her:

“I thought I was sort of intelligentsometimes, but I thought, you know, I won’tbe able to do it.”

However, some young people decided that it wasimportant to challenge such negative views aboutimpairments and fought back! Shehnaz remarked:“I handled it, I can usually give as good as I getfrom anybody.” Azhar described his defiance:

“They just used to say, ‘oh you can’t talkproperly’ and this and that and ‘he’shandicapped and disabled’, but I used tothink, ‘sod them’.”

For some of them, these problems made themwant to go to schools where children withimpairments were taught together. Theexperience of those young people weinterviewed who did attend ‘segregated’ schoolsdid not support this view, however. Their biggestworry was about academic standards. Nineteen-year-old Tahir said:

“It’s not like a proper school. It was just forthe handicapped. It was a load of rubbishto me. It was just like typing something intothe computer like kid’s type stuff.”

Parents shared these concerns. Gurupal’s motherfelt her son achieved little at a ‘special’ school,and she insisted that he was moved to amainstream school:

“My idea was always to put him into anormal school because he was intelligentyou know, he has got nothing wrong withhis mind, it’s just he’s physically disabled,not mentally, so it was good when he didgo to mainstream.”

Gurupal agreed with his mother’s assessment ofhis ‘special’ school and felt that no one took any

interest in his education: “I wasn’t treated like ahuman being in that school. I didn’t feel that Iwas being treated properly”. Like some of theother young people, however, academicachievement was not his only concern. He felt‘special’ schools did not provide him with theskills to survive well outside school:

“If I would have been in a special school allmy life I wouldn’t have known how tointeract and socialise with people who areable-bodied.”

Some young people commented on the stigma of‘special’ education. Twenty-eight-year-old Fatimasaid:

“I used to say, what am I doing in thisschool? I’m perfectly all right. I’ve gotnothing wrong with me. I shouldn’t be inthis school.”

Those who went to mainstream schools had abetter academic record, with two young peoplegoing on to degree level education. Those whowent to ‘special’ schools, on the other hand, weremore likely to leave school with no formalqualifications. Nonetheless, nearly all the youngpeople we interviewed had fewer qualificationsthan their brothers and sisters. Most left school togo to colleges of further education where they didbasic courses such as information technology andlife skills. Their brothers and sisters had moreoptions open to them. The young people alsosaw these courses as having no real purpose,except to keep them occupied. Twenty-five-year-old Munir remarked: “It doesn’t really matter ...it’s just to get me out of the house and dosomething”. This was a common view amongthose attending courses. Their parents agreed.Munir’s mother, when asked about her son’scourse, said, “It passes the time”. Young peopleoften remarked on the stigma attached to suchcourses. Twenty-year-old Waheed completed aone-year life course at the college:

“[which showed] you how to wash yourclothes, how to cross the road. I was soashamed I couldn’t tell my cousin whatcourse I was doing, because it was a lowcourse, but it was a course for mentalpeople, and I wasn’t mental.”

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Health and social services

Young people found it difficult to obtain theappropriate health and social services. Manycommented on the problems of finding out aboutthe support that was available to them. Twenty-seven-year-old Robina remarked: “I thinkinformation isn’t readily available to you. I meanyou have to go and search for it”. Their parentsalso described similar problems. Moeen’s motherdid not know who to turn to for advice or help:“We don’t even know what to do”. Once theyhad discovered that help was available, youngpeople often found it difficult to get hold of thatsupport. They felt health and social care workersdid not take their concerns seriously andsometimes made it difficult for them to get whatthey wanted. Several young people emphasisedthe importance of being demanding and notgiving up in that situation. Twenty-two-year-oldAzhar said:

“I’ve got to ask for it, it’s part of life. You’vegot to ask, they don’t come running to youdo they?”

More generally, young people felt that workersdid not listen to them and did not understandwhat they were going through. They felt that theservices were insensitive and unsuitable. Manyyoung people, therefore, had little confidence inwelfare provision. Twenty-two-year-old Jamilawent to a social worker to discuss the optionsavailable to her:

“I just wanted some information, you know,I was just deciding whether to move out andhave my own place and he was like reallyputting me off, you know, saying, well,that’s how I feel at the time, like he wassaying, you know, it’s really hard work, youhave to, you’ve got your own place, youknow, you’ve got the bills, you’ve got thisand you’ve got that, you know, then youbecome lonely and stuff.”

Their families also shared these concerns.Gurudyal’s brother remarked that he felt thatsocial services had lost interest in them becausethe family did not want to let Gurudyal go to livein an institution. Mushtaq’s sister was especiallycritical of social workers:

“I mean social workers, they’re just bloodystupid. No one gives a damn. The socialworkers are meant to be looking after him.But I don’t think they do a good job.”

There was a lack of trust between young people,their families and the service workers. Tahir’smother felt that the services constantly ignoredher child’s needs, despite requests for help. Shesaid, “I don’t trust them any more”. The youngpeople and their families often commented thathaving their needs recognised and acted on was aconstant struggle. According to Rabia’s mother,“When we request things, that is when things takeforever”. Nasira remarked: “The equipment thatwe use, we have to fight for it. We have to fightfor everything”.

Parents’ views on welfare services

Parents, as we have seen, share their children’sfrustrations about service support, often acting asgatekeepers between their child and the services.As the child gets older, this role usually becomesless important. It may be different for youngpeople with impairments. Parents were likely tobe involved with services for far longer than theymight have expected to for children withoutimpairments. The young people themselvessometimes found this helpful and recognised thattheir parents were important allies in obtainingservices. At the same time, young people wereaware that service providers often let their parentsspeak for them. This left them feeling excluded.Several young people, for instance, mentionedthat questions were directed at their parents whenthey felt that they should have been askeddirectly.

As well as being a proxy for their child, parentssometimes wanted professional help forthemselves to meet their own and their children’sneeds appropriately. They often did notdistinguish between this support for themselvesand that for their child. This seems a commonresponse among the families where a youngperson has an impairment. It can sometimesmake the young person feel left out. Parents feltthey got little support from the services,especially in coming to terms with their child’simpairment (right from the time of diagnosis).The ‘sense of loss’ which they described seemedto be partly based on their contact with serviceswhere impairment was often presented to them as

Using the services

26


being a ‘personal tragedy’. This meant thatparents sometimes found it difficult to deal withimpairment, feeling that their child was more atrisk than others, would be in permanent need ofsupport and have a restricted quality of life.Often these assumptions meant that theyunderestimated what their son or daughter couldachieve.

The parents’ relationships with services alsoreflected ambivalence. Some, for instance, werereluctant to accept support. Moeen’s mother said:

“I know there are carers that are available,but I want to look after Moeen myself. Asfar as I am concerned, as long as God givesme the energy to look after my son, I will. Idon’t want anybody else coming here andlooking after my son.”

Gurucharan’s mother remarked:

“He might think low of himself by sayingthat other people have to come and help.We therefore feel it is important that heknows we care.”

Such comments might also reflect the parents’ lowexpectations of the support available to them (aswell as indicating how they felt about their ownroles and responsibilities).

Appropriate services for minority ethnic groups

Many of these problems are typical of the contactbetween services and young people withimpairments and their families – of any ethnicgroup. Insensitivity in welfare provision does,however, make the problems faced by SouthAsian young people and their families worse thandisabled young people in general. The youngpeople we interviewed faced some of the usualproblems common to many minority ethnicgroups in their dealings with the welfare state.Young people and their families could providemany examples where the communication withsocial workers, health professionals and theBenefit Agency hampered access to support.Young people and their parents also noticedcrude stereotypes and myths being used byservices. Impairment, for example, was oftenblamed by professionals on first-cousin marriage,as though the young person’s impairment wasonly due to South Asian cultural practices. This

made them feel blamed. More generally, youngpeople and their families felt held back by theirown limited access to the welfare state as well asby the service providers’ failure to take account ofall users’ needs regardless of their ethnicity,background or of the language that they used.

Some young people and their parents alsomentioned racism as a problem. Nasira, forexample, was getting frustrated at trying to getsocial service support: “English people wouldhave just got it, just like that”. Nasira complainedabout the lack of facilities for South Asian peoplein particular:

“There isn’t anything there for us in terms ofAsian people. Services aren’t catered for us.English people know what they can getbecause they know what’s available, but forAsian people its different, our needs aredifferent.”

When she challenged her local social servicesdepartment she felt that they only stressed theproblem of resources. Nasira was unhappy withthis response:

“They say they can’t do anything for Asianpeople because they haven’t got the money,but they do have the money because theyhave services for white people. Why don’tthey have them for Asian people?”

Both young people and their families believedthat the services needed to understand and reactto cultural differences. Their poor view of theservices meant that they wanted better access tothose services as well as to different kinds ofsupport which recognised ethnic, cultural andreligious differences.

Summary

In education, health and social services, youngpeople and their families experienced:

• Racist and disabilist barriers to having their needsrecognised and responded to by the welfareservices.

• Limited opportunities because of the inability ofservices to recognise and deal with their needs.

• The need to be assertive about getting needsmet.

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6Implications for policy, practiceand research

The views of South Asian young people withimpairments (together with those of theirfamilies) raised a number of important issues.Because little is known about what they think asopposed to what white people in the samesituation think, the services may not alwaysreflect what they want.

It is clear that services do fail to provide for themin the way that they want because providers donot know enough about their needs. Servicesmay be based on stereotypes and myths abouthow South Asian people behave generally, forexample, having lots of support from extendedfamilies. Another element that the services mayfocus on is the idea of independence which maybe interpreted quite differently by South Asianpeople. An emphasis on leaving home, forinstance, may not be the only way in whichindependence is defined. There are several waysin which disability and impairment are affected byage, gender and ethnicity, as well as religion andeconomics. How these young people saw theworld did take account of all the other influencesin their lives. They had clear ideas about whatthey wanted and they were quite used tocompromising between their families’ ideas andtheir own as well as with those of wider society.

Negative views of impairment and disability didaffect them and make them feel discriminatedagainst. Sometimes these views came from theirparents, extended families or from theircommunities. Some of them had learnt to dealwith this disability discrimination in the samekind of ways in which they dealt with racialdiscrimination. They also found that they couldtake their families’ culture and religion and use itas a part of their own view of the world. Somefound disability politics useful, others found

family support an effective way of dealing withthe world. They deal with disability,discrimination, racism and living in differentcultures and religions at the same time as all theother aspects of growing up.

Learning about ethnicity, culture andreligion

Ethnicity was not neutral and it includedlanguage, culture, religion and nationality, as wellas a shared history. It was important to look athow the young people saw ethnicity. Contactwith their parents’ country of origin was a symbolof ethnic identity and, as such, links wereimportant for nearly all the parents weinterviewed, as was the use of their first language.Young people, however, were less enthusiasticabout their parents’ countries of origin andlanguage. They shared similar views to theirbrothers and sisters and to other South Asianyoung people living in Britain. They and theirbrothers and sisters identified with being ‘British’more than with being ‘Pakistani’ or ‘Indian’. Theirsense of being British was often based on beingborn and living in Britain. There was also a viewthat the attitudes and values held by the SouthAsian community living in Britain were lessrestrictive than those in their parents’ homeland.Young people with impairments, particularly,found identification with Britishness as beingeven more important because they felt that theyreceived more ‘respect’ within ‘British’ than‘Asian’ situations and had access to bettersupport. Learning their parental language wasmore acceptable and many spoke more than onelanguage, but some had been ‘let off’ learning onthe grounds of disability.

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Young people’s responses to their own or theirparents’ country of origin often saddened theirparents. Parents’ attitudes to their homeland alsovaried. If parents had little interest it was alsolikely that both the young person and theirbrothers and sisters had weak ties with theirparents’ country of birth and only limitedunderstanding of their parents’ language. Theyoung person’s impairment played only a smallpart in this. Access to religious teaching was aparticular problem for young people – there waslittle disabled access provided by formal religiousinstitutions and attitudes of religious teacherswere often disablist.

How their families responded to religion was alsoimportant. Religion was an important aspect ofidentity for South Asian young people living inBritain. The young people we interviewedsometimes said that their disability interfered withtheir sense of religion. They had poor access tothe wider community networks that might havehelped to develop religious and culturalconnections. This problem seemed to be aboutthe more formal practice of religion. None of theyoung people we interviewed was completelyremoved from their parents’ ethnic, religious andcultural traditions. Most had a workingknowledge of religion and culture and dididentify with their family’s religion. In many ways,young people had a similar awareness of religiousand cultural values to their brothers and sisters,although many had only limited access to formalreligious teaching. Where it was limited it waslikely that it was shared by the rest of theyounger generation of the family.

Young people with impairment and their sistersand brothers understood how to work throughthese conflicts. Those conflicts that did arise withtheir parents were often a result of differentunderstandings of cultural values rather than alack of knowledge. Young Muslim women, forexample, could question their parents’ restrictionson Western dress, while still recognising theimportance of modesty. This showed the successof the families’ ability to pass on ethnic, religiousand cultural values. It also reduced the impact ofthe child’s impairment as a separate issue onlearning about family, religion and culture.

Relationships and disability

South Asian parents faced similar difficulties ofproviding practical, social and financial support tothose described in the general literature on youngpeople’s impairment and chronic illness. Theyalso sometimes held negative views of the effectof disability on their family, partly because of howit was presented to them initially by professionals.

Young people with impairments shared some oftheir parents’ and wider family’s negative views,but not all. This led to a tension in the storiesyoung people and their families told. The youngpeople accepted that they might be at risk, but atthe same time they wanted to lead valuable lives.Some young people felt that their parents’ view ofdisability undermined their own confidence.They felt left out in some situations but they alsofelt a part of the loving and caring families, whichoften helped compensate for such negative viewsand experiences.

The young people saw parents as allies trying tosecure the best opportunities for them. All ofthem were aware of how society did notaccommodate impairment and difference andrestricted the opportunities available to theseyoung people – they all saw clearly the socialeffects of disability.

Overprotection caused tension between youngpeople and their parents. The young peopleoften interpreted their parents’ actions as anoverreaction to the difficulties they faced. Genderwas significant here, as young women withinSouth Asian communities felt that they were seenas having more easily damaged reputations.Moral protection of young women was part of ageneral cultural picture, and such protection didrestrict the social lives of young women morethan young men with impairments.

All the young people had to engage with theirparents over rules and negotiations. Comparingthe accounts of the young people withimpairment with those of their brothers andsisters confirmed this. Young people withimpairments had to ‘grow up’ in the same way astheir peers. Seeing impairment in this broaderlight helped young people to have a good view ofthemselves. They recognised that impairmentwas only one part of their lives. That is whyyoung people gained a lot by fulfilling

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expectations of their roles as family members –giving advice or in helping other people.

Young people and their families often criticisedthe extended family for having a negative view ofdisability. They sometimes felt socially isolatedand ostracised, and wished that their extendedfamilies were more accommodating andunderstanding.

The social meaning of disability

The negative views of impairment that youngpeople found in the family were similar to thoseoutside. They felt that people underestimatedthem. Young people also felt that, compared totheir brothers and sisters, they were deniedopportunities socially. They faced discriminationin education and at work, and were often deniedthe opportunities available to their brothers andsisters. They also found it more difficult to find amarriage partner and to leave the family home ifthey wanted to, as well as fulfil the familyobligations which they saw as usual for someoneof their age and gender. Isolation was a particularproblem for young people and this alsocontrasted with the experience of their brothersand sisters who did not have impairments.

Discrimination accounted for why some youngpeople, like their parents, were drawn towardsexplanations of disability. Few young peoplediscussed this in a political way, though they diddescribe barriers. As with their parents, youngpeople’s stories reflected both social and medicalexplanations of disability. A few young peoplehad taken a more positive political view ofdisability and drew strength from this.

This positive identity as a disabled person hadadvantages for them but they still felt that someof it may have been based on Eurocentric ideas.Independence, for example, may not have hadthe same meaning among different ethnic groups.Policy and practice needs to take account of thisdifference in outlook.

Just as Bignall and Butt (2000) found in theirstudy of young black people with impairment,independence had many different meanings.Sometimes it was about living on your own orabout making choices about how you spent yourtime or which colour your room was painted. Atother times it was about taking control. There

was a clear expectation that young peoplegrowing up become more self-reliant and lessdependent on others, and this may be affected byimpairment and disability. It is still closely linkedto family relationships where give and take anddepending on each other is important.

South Asian young people wished to be part oftheir ethnicity, culture and religion and thisinfluenced their experience of disability.Discussion has tended to concentrate on ‘culturalconflict’ between South Asian young people andtheir parents, but in our study we saw quite asuccessful way of dealing with cultures andreligions among the young people withimpairments.

Use of the services

As well as being part of identity, family cultureand ethnicity can also have another politicaleffect, that of being excluded by a powerfulmajority. A sense of difference, emphasised byracism and discrimination, remained an importantinfluence on how these South Asian youngpeople saw their lives. Racism, for example, wasa feature of the young person’s relationship toservices. Young people and their families, forexample, sometimes found services unable torespond to their needs or were treated accordingto racial myths and stereotypes that denied themthe support that they needed. The youngperson’s disability added to this discriminationand affected how much they would control theirlives. Some of this disablist discrimination wasshared with their ‘white’ disabled peers.Generally, however, disablist barriers and racismmeant that South Asian young people withimpairments – and their families – had difficultiesin getting the right kind of services from thewelfare state.

Social views of disability

Disabling barriers were a powerful influence onhow these young South Asian people sawthemselves. Young people had to deal withdisablist views, both from within their family andoutside, suggesting that disabled people havemuch in common irrespective of ethnic origin.Explanations of these barriers, however, haveoften been based on white people’s experiences.

Implications for policy, practice and research

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Our findings suggest that impairment can only bemade sense of within the whole picture ofsomeone’s life. Most young people sawthemselves as defined by other things as well asimpairment. Both racism and disablism affectedhow young people saw themselves, but so didtheir age and gender.

We talked mainly with Pakistani Muslims andsome Sikhs. They reported similar experiencesand perspectives, which may suggest that thefindings are likely to apply to South Asian groupsmore generally.

Policy and practice need to reflect this diversityand not assume that Western ideas aboutdisability and independence have the samemeaning for South Asian young people and theirfamilies. In particular, services need to becomemore sensitive to the cultural and religious valuesheld by young people and their families and torecognise how these interact with the experienceof disability. Doing this will help to make surethat services are better informed about whatminority ethnic people with impairments andtheir families themselves want, rather than basingit on various disablist and racist stereotypes.

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More about the young people interviewed:

Age

1 aged 17-186 aged 19-205 aged 21-222 aged 23-242 aged 25-267 aged 27-286 aged 29-30

Status

Eight were at college, one at university and nineon training courses. Four others were working.Most lived at home with their parents. Elevenwere married and two were divorced.

Families

14 parents (5 fathers, 9 mothers)15 brothers and sisters (9 brothers, 6 sisters)

Appendix

Interviews

Interviews in Punjabi and Urdu were translatedinto English. Two people refused to be tape-recorded so notes were taken.

We used qualitative methods to analyse theinterviews onto a map or framework using thethemes which came up. We compared them andlooked at the different backgrounds to try anddevelop ideas from these which would be usefulto inform the services.

As well as contacts through statutory andvoluntary groups, community members wereconsulted to contact young South Asian peoplewith impairments.

South Asian disabled young people and their families

Documents

Transcript of South Asian disabled young people and their families