South Asian Women – Negotiating Identities
SOUTH ASIAN DISABLED WOMEN: NEGOTIATING IDENTITIES
2005
Dr. Yasmin Hussain
Department of Sociology and Social Policy
University of Leeds
Leeds
LS2 9JT
Tel: 0113 233 4618
Email y.hussain@leeds.ac.uk
Biographical Note
Yasmin Hussain is a Research Fellow in the School of Sociology and Social
Policy, University of Leeds.
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South Asian Women – Negotiating Identities
SOUTH ASIAN DISABLED WOMEN: NEGOTIATING IDENTITIES
ABSTRACT
This paper is concerned with the identities of disabled South Asian women within
Britain. It presents empirical evidence concerning how disability, gender and ethnicity
are negotiated simultaneously for young disabled Muslim and Sikh women. How
these identities are negotiated is analysed in the realms of family, religion and
marriage drawing on qualitative interviews with the young women, their parents and
siblings. The paper argues against ideas of singular identity or the hierarchisation of
identities or oppressions. The paper contributes to contemporary debates about how
young South Asian women are constructing new forms of identity in Britain.
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South Asian Women – Negotiating Identities
SOUTH ASIAN DISABLED WOMEN: NEGOTIATING IDENTITIES
INTRODUCTION
This paper presents an analysis of disabled South Asian women within their
respective ethnic, religious and cultural frameworks. Literature addressing ethnic
minorities and disability has largely ignored the concerns of South Asians and
especially South Asian women.
Furthermore debates about identity, disability,
ethnicity and gender take place in isolation from each other, yet they need to be
considered in relation to each other. South Asian women – irrespective of impairment
– may identify with different religious and cultural values to those of wider society
(Modood et al., 1994). It is the convergence of multiple places and cultures that
transforms the terms of South Asian women’s experiences, a process which requires
them to negotiate and re-negotiate their identities.
It is against this background that this article aims to decipher questions of
identity, by examining young women’s experiences of the inter-connected practices of
religion, family life and marriage within the South Asian community in Britain.
These practices are the focus of the empirical analysis as they are the most significant
sites of the hybridisation of identity, negotiation between parents and children and
where questions of sexuality and the meanings ascribed to the disabled body come to
the fore.
The views of these women and those of their parents and siblings show how
these experiences are socially constructed and regulated. Their place within society,
the lives they lead, their relationship with others, and attitudes towards them, are part
of a broader social and cultural picture. Their lives are shaped most immediately by
cultural and religious factors largely through the family and the community. Ethnicity
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South Asian Women – Negotiating Identities
is an added dimension to the lives of the young women interviewed, as they relay an
experience of disability in which they attempt to reconcile the inability of the wider
society and of the minority community to accommodate their impairments. What is
remarkable about these women is that irrespective of the boundaries they encounter
they succeed in maintaining positive ethnic and religious identities.
First the methodology of the research is outlined with a particular emphasis on
how the sample was constructed in order to address the central research questions.
This is followed by a discussion of recent debates around the relationships between
disability, gender and ethnicity.
This section aims to show how mainstream
discussions of disability (e.g. Corker and French, 1999; Oliver, 1996; Swain et. al.
1993) and disability and gender (e.g. Lloyd, 2001; Morris, 1991) tend to ignore
ethnicity, and how, when the ethnic dimension is introduced, many of the issues
raised within the disability studies literature have to be re-thought and cannot be
assumed to be universal. The rest of the paper is then concerned with the empirical
data focussing on the inter-related questions of religion, family and marriage
METHODOLOGY
The data used in this research was carried out as part of a study entitled ‘Disability,
Ethnicity and Young People funded by the Joseph Rowntree Foundation (Hussain et
al, 2002).
The project used qualitative methods and analysis, based on semi-
structured interviews. Young people were interviewed as well as their parents and
siblings where possible. The focus was on young disabled South Asian people who
had been born or had grown up in Britain and who had recently or were currently
going through significant life course transitions such as marriage. The inclusion of
parents and siblings in the sample represented an important methodological principle,
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South Asian Women – Negotiating Identities
to ensure that disability did not dominate the respondents’ narratives.
In-depth
interviews with topic guides for all three groups of interviewees were used. Questions
were framed around the following headings: social networks; family relationships;
religion and language; living with a disability; society and disability; service support;
education; and future expectations.
Twenty-nine disabled young people were interviewed; sixteen young men and
thirteen young women; between seventeen and thirty years old. Nineteen young
people were Muslim and ten were Sikh. In addition to this fourteen parents were
interviewed; eight described themselves as Muslim, six as Sikh. Fifteen brothers and
sisters were also interviewed and who, where possible, were matched with the gender
of their disabled sibling. Overall ten interviews were in Punjabi, one in Urdu, and
forty-seven were in English. The interviews were tape recorded and transcribed and
pseudonyms used to ensure the anonymity of respondents.
Strenuous attempts were made to generate a Hindu sample through the same
mechanisms as the Muslim and Sikh sample, both in the North of England and the
Midlands. However this was unsuccessful; Hindu disabled young people were absent
from the local authority registers and neither were they recognised by the Hindu
community or religious organizations. Clearly this is a major limitation on this study
in terms of making wider generalisations about South Asians and comparisons
between them, and this experience suggests that a very different methodological
approach to researching disability within the British Hindu community is needed.
The sampling frames allowed us to approach individuals with a range of
experiences and circumstances, in sufficient numbers to allow meaningful analysis. A
range of ages, for example, was included, as well as a balance of young men and
women. Although this paper focuses on the experiences and identities of young
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South Asian Women – Negotiating Identities
women, the inclusion of men in the sample allows some important comparisons to be
made below at certain crucial points. It was decided to select people on the basis of
religion because evidence suggests this is a more important variable than parents’
place of birth for South Asian ethnic identities in Britain (Modood et. al. 1997).
The sample was generated from a diverse range of organisations. This would
ensure it was not dominated by groups of individuals with similar experiences. The
need to include people who were not in touch with state services, for instance, was
recognised as important, as was the inclusion of individuals who were not necessarily
active members of the voluntary sector.
The young disabled peoples’ parents were largely working class, who were
either unemployed, worked in textile factories or owned small businesses such as
shops.
All the parents were born either from India or Pakistan.
The fathers
sometimes stayed at home to help the wife look after a disabled child. Respondents
had physical impairments – half of which had the impairment from birth, the others
had acquired the impairment through illness or accidents.
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South Asian Women – Negotiating Identities
ETHNICITY, DISABILITY AND GENDER
The medical model of disability, with its emphasis on individuality, rehabilitation and
sense of personal tragedy, has been challenged by the social model emphasising that
many of the disadvantages faced by disabled people arise because of the wider
society’s inability to accommodate them (Corker and French, 1999; Oliver, 1996;
Swain et al., 1993). This suggests that impairment can only be understood against
what is considered as ‘normal’ for someone of their own age, gender and social class.
Normalcy is not a given universal and impairment needs to be seen in its social and
cultural context (Ahmad, 2000). Despite its valuable and important role in asserting
the rights of disabled people, the disabled peoples’ movement has being criticised for
not recognising ethnic diversity (Stuart, 1996).
For many disabled ethnic minority people racism remains an issue and affects
their engagement with the wider society. This is manifest, for instance, in the greater
social and material inequalities experienced by South Asian families when compared
to White families (Mason, 1999; Modood et al., 1997). Furthermore, South Asian
families with a disabled child tend to be poorer than their White counterparts and have
less access to services and benefits. The barriers faced by ethnic minority families
with a disabled or chronically ill child act to exclude them from society (Chamba et
al., 1999). This is part of the broader context within which disability assumes a
specific meaning for South Asians. The failure to engage academically with the
circumstances of those individuals who are both disabled and from ethnic minorities
renders them invisible (Begum, 1992; 1996).
Women’s writings on disability during the 1980’s and 1990’s had raised the
question of the subordination of disabled women (Lloyd, 2001; Morris, 1991; Boylan,
1991). However, the category of ‘disabled woman’ failed to relate to ethnic minority
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South Asian Women – Negotiating Identities
women; these writers depicted experiences which were perceived as the norm,
describing the condition of ‘all’ women who had impairments, but ignored ethnic
minority women’s experiences which are embedded within ethnicity, culture and
religion.
This absence has meant that little is known of the commonalties and
differences between disabled ethnic minority women and disabled White women.
Just as the discrimination and disadvantage experienced in the 1970s signalled the
emergence of the Black community on the social and political fronts, a Black
collective identity also emerged within the field of disability using the collective label
‘Black’. Black women defined a womanhood which is significantly different to the
general trends in the women’s movement, by analysing the triple oppression of
gender, race and disability, and how these shape the lives of Black women (Lonsdale,
1990). The collectivisation of experiences under the term ‘Black’ has enhanced the
chances for the harmonisation of diverse struggles on issues of gender and race,
Subsequently writers such as Nasa Begum (1994) and Ayesha Vernon (1998) have
encompassed a South Asian female perspective under this blanket term.
Amalgamating South Asians within the established category of ‘Black’ in
contemporary disability discourse gives the illusion of homogeneity, and fails to
analyse the different features of identity. The issues dealt with under the term ‘Black’
are largely around disadvantage and the demand for equality. Differences in lifestyles,
for instance in relation to religion, family and marriage give rise to particular issues
within these minority communities and are absent from disability discourse.
The
experiences of South Asian people, in particular women, are intricately connected to
their ethnic and cultural background (Hussain et al, 2002).
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South Asian Women – Negotiating Identities
Even the category ‘British South Asian’ has short comings. ‘South Asian’
spans a broad definition which condenses within it specific parameters such as
religion. It does however provide theoretical direction, since the term British South
Asian focuses on what is culturally and ethnically shared. There are similarities in the
position of Muslim, Hindu, Sikh, and Gujrati women that allow a collective reference
as South Asian.
Ultimately, locating the identity of British South Asian disabled women within
established categories inherited from the past proves to be limiting. The implications
of this are especially complex when it comes to dealing with disabled people from
ethnic minority groups where the idea of hybrid identity emerges (Papastergiadis,
1997). This is part of a more dynamic process, reflecting broader changes in the
experience of South Asian young people living in Britain. Young people engage with
ethnic, religious and cultural values associated with their parents’ homeland within
the context of a Western society. Academic, policy and lay discussion tend to overemphasise ‘cultural conflict’ between young people and their parents, in particular
those pertaining to gender (see Brah 1992). Outright rejection of their parents’ ethnic
and religious identities is rare among the second generation, although partial and
contingent acceptance as well as reinterpretation of some values does occur (AmitTalai and Wulff 1995; Drury, 1991). It is not a question of forsaking one claim for
another and choosing between a ‘Western’ or ‘Asian’ way of life (Modood et al,
1994; 1997). Consequently the idea of hybrid identities has emerged to analyse these
issues (Papastergiadis, 1997). To what extent do these ethnic, religious and cultural
identifications further mediate the experience of disability?
Recent research into the lives of young South Asian women growing up with
physical impairments shows that issues of difference, gender inequalities and culture
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South Asian Women – Negotiating Identities
are all important (Hussain et al 2002). No young disabled woman is totally detached
from their parents’ ethnic, religious and cultural traditions. In fact most young people
acquire a good working knowledge of ethnic traditions and religious teachings and
identified with them. These young women question their own predicaments, values
and responses and recall how they come to terms with their own British South Asian
identity and disability.
Women in South Asian communities are also the guardians and
representatives of family honour, where their role within the family becomes
intertwined with notion of izzat, meaning family honour and self-respect. Izzat in
Britain faces a new range of threats; for example, should women be allowed to go
onto further education, enter employment or choose their own marriage partner?
Whilst their British upbringing encourages notions of individuality and independence
and also convinces them that they have the ability to earn a living, the notion of filial
duty is difficult to shed without incurring feelings of vulnerability and guilt (Afsar,
1989, Wilson 1978). For disabled South Asian women their communities’ views
about disability add a further layer of complexity around izzat.
Finally, for these women, their body is included in and often compromised by
broader social and structural relations (Edwards and Imries, 2003). Disabled women
also seek sexual and reproductive rights that are specific to them as disabled people
(Lloyd, 2001). These issues remain underdeveloped in disability studies, especially
the absence of ethnicity in such considerations. Whilst the literature on gender has
engaged with ideas about the body and its social construction, disability discourse
continues to marginalise ethnicity and gender.
The South Asian female body
becomes a site of resistance to the influences of social and ethnic relations. The South
Asian community still deploys a medical model of disability that is primarily
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South Asian Women – Negotiating Identities
concerned with the physical body. Consequently for the women their body becomes
intricately bound up within a social construction of femininity where their body
ultimately becomes ‘text’ (Hughes 1999; Shilling, 1993). For the South Asian women
interviewed for this study, the body becomes the site where the power of others is
realised, and izzat is one form of this, and wider racism another. They become
disabled through the attitudes and norms by which society defines them (Edwards &
Imrie, 2003). Thus they battle against ethnically specific expectations with regard to
sexuality, reproduction and ideal body images.
SOUTH ASIAN FAMILIES AND DISABILITY
Literature about South Asian disabled people in the past has largely focused upon the
medical model with its emphasis on personal tragedy. Rohina Shah (1986) cites
examples of parents who reject their disabled child. They encountered feelings of
resentment by other members of their family and felt stigmatised by them. The
parents interviewed for this study also saw the birth of a disabled child as a
punishment for sins or a test from God (Hussain et. al. 2002). This promoted feelings
of inadequacy especially for the mother, and consequently parents failed to prepare
for the welfare of their child, assuming that God would protect him/her (Shah, 1986
quoted in Begum, 1992).
Because having a disabled child has social and
psychological consequences for parents; this became bound up in their relationship
with the young person as it affected how the young person made sense of their
disability (Hussain et al, 2002; Beresford, 1996; Chamba et al., 1999).
Parents became ‘over-protective’, often underestimating the abilities of the
young person and thus undermining their ability to exercise control over their lives
(Atkin and Ahmad, 2000). Parental concerns specifically focused on issues such as
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South Asian Women – Negotiating Identities
the ability to successfully negotiate transitions that they deemed ‘normal’ for nondisabled children: a good education; social skills; knowledge of parental religions and
cultures; and assuming adult roles such as having a job and being married. Parents
felt their child’s impairment presented additional and substantial barriers (Hussain et
al, 2002). To a large extent, parents saw caring for a disabled child as an extension of
their parenting role and one that would continue into adulthood. They felt responsible
for all aspects of the child’s life and worried about how their disabled child would
cope with adulthood. Parents also expected to be involved in the child’s life far
longer than they would for their other children. Such assumptions, however, can
create possible tensions between themselves and the young person.
Despite having some sense of a social model of disability, families did not
entirely transcend their sense of personal tragedy and more general negative views of
disability (Hussain et al 2002).
Several parents encouraged the young women
towards greater independence. This introduced an ongoing tension in the parents’
views of disability. Whilst they regarded their child as vulnerable and unable to have
the opportunities available to their other siblings, parents wanted to maximise the
opportunities available to their child and encourage independence.
Some parents felt the extended family created additional barriers for the
family. To this extent, South Asian communities’ disablist attitudes are perhaps no
different from the general population (Ahmad, 2000). This also reminds us that that
the extended family is often a mixed blessing (Chamba et al. 1998) and sometimes
oppressive, providing moral policing but little practical support (Katbamna et al.
2000). Women’s moral identities were perceived within South Asian communities to
be more ‘at risk’ than men’s, having consequences for the individual and the family
and affecting marriage prospects (Katbamna et al. 2000). Men are agents of the
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South Asian Women – Negotiating Identities
culture yet women are its symbols; the protection of moral identities is fundamental to
this, and this shapes gendered responses to disability in ethnically specific ways
(Anwar, 1979; Ballard, 1994).
All the parents, without a shadow of doubt, wanted the best for their
daughters, yet they were clearly more distressed at having a daughter with a physical
impairment, and their daughter’s recognised this. According to Saira Iqbal a twenty
two year old single Muslim woman who experienced problems with her joints: “If I
was a boy, I think it would have been easier ’cos… our Asian people, all they want
are sons, they don’t want daughters, they think daughters are useless”. This applied
equally to Muslim and Sikh families. The mother of Rupal Bains, a young single
Sikh woman who had mobility problems and used a wheelchair, summed up the
concerns of many parents: “Sons are sons, they’re boys. You don’t worry about boys,
do you, the same way.” Perceived threats to young disabled women’s moral identities
were countered by resisting their incursions into the wider social world. The father of
Rukhsana Javed (Muslim, Single,19) did not like his daughter, who experienced
mobility problems arising from complications associated with kidney failure,
attending social clubs for other disabled people, explaining that: “I don’t want her to
go along with [the idea] that girls should have male friends.”
The young women, themselves, recognised these differences. Jameela Yusaf,
a twenty eight year old Muslim woman whose mobility problems arose from a spinal
condition, remarked: “Like my brothers, they don’t get stopped, they can go out with
friends but it wouldn’t be the done thing for girls within the family. I think they have
slightly more freedom than us.” Young women with impairments thus tended to
experience greater isolation than young men. Nevertheless, both the young disabled
persons and their non-disabled female siblings had to negotiate such issues in similar
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South Asian Women – Negotiating Identities
ways; consequently, disabled young women were not particularly disadvantaged in
this respect compared to their able-bodied sisters.
These South Asian women tried to exercise some control over their lives with
a sense of mutuality, interdependence and ability to reciprocate. They negotiated the
meaning of disability as they celebrated their ethnic, cultural and religious
differences. Such identifications become especially salient in terms of the ‘second
generation’, irrespective of whether they have an impairment. Establishing autonomy
and independence is as important to South Asian young women living in Britain as
their ‘White’ counterparts, yet assumes different connotations (Atkin and Ahmad,
2000). For disabled women, developing and sustaining an identity separate from their
parents and exercising some control over their own lives, however, is not always
equated with leaving home and establishing an independent existence (also see
Ahmad et al, 2000). The narratives of the young women with physical impairments
reflect this. According to Jameela Yusaf, a twenty eight year old Muslim woman with
mobility problems: “Within our culture, it’s difficult... I couldn’t say to my parents
like I’m going to live independently, like an English person could do that, there would
be difficulties”. It is not the norm for young unmarried women to leave the parental
home; traditionally, they leave when married. These Asian women have a need to
exercise control over their lives with a sense of mutuality, interdependence and ability
to reciprocate. They negotiate the meaning of disability as they celebrate their ethnic,
cultural and religious differences (Hussain et al, 2002). Such identifications become
especially salient in terms of the ‘second generation’, irrespective of whether they
have an impairment.
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South Asian Women – Negotiating Identities
RELIGIOUS PRACTICES
The primacy of religion in South Asian identities owes at least as much to community
relations as to personal faiths, and it marks a significant dimension of cultural
difference between the communities and British society. There is very little if any
movement between generations from a religious identification to ‘none’ among the
younger members of these groups (Modood et al, 1997). For the young women
interviewed conforming to the religious practices of their parents was a further
expression of their ethnic identity. However, there were different experiences of
religious practices between ethnic groups. Most of the Muslim participants practised
their faith more readily than their Sikh counterparts. Within the Muslim population
there were gender differences, women emphasised the role religion had in their lives
more than their male counterparts; for these women it was an integral part of their
lives.
Young disabled people, irrespective of gender, did not have the same access to
religious and cultural socialisation as their non-disabled siblings (see also Ahmad et
al, 1998; Hussain et al 2002). A particular problem was religious education and the
role of mosques and temples. Attending places of worship was problematic: according
to Rajwinder Kaur, a twenty eight year old Sikh woman whose burns have caused her
severe mobility problems, “I do feel bad because I wish that I could go, [but] you
have to sit on the floor, you see, and it’s hard getting back up”. Religious teachers
sometimes failed to accommodate the young person’s impairment or did little to
support or encourage them. Fatima, a single Muslim woman aged twenty six with
achondroplasia, was made to feel different when she attended the Mosque and was
taught in a separate room, away from the other children; she added, “the Imam did not
seem that interested in teaching me”.
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South Asian Women – Negotiating Identities
Impairment continued to affect their lives into early adulthood to the point that
almost all the young women avoided attending either mosque or temple and religious
gatherings in people’s houses on account of the problems they expected to face. For
many of the young people interviewed estrangement from such religious occasions
seemed to be largely confined to the more formal rituals associated with their religion,
in the case of Muslims such as reading the Quran and praying. Humaira Saleem, a
single woman aged twenty nine who lost the use of her legs as a child, like other
young people, described how her impairment interfered with her observance of
religious practices: “Well, I can’t read namaaz properly because I can’t sit down on
the floor; I find it difficult”.
But for the Muslim interviewees religion was a
sufficiently important part of their lives for them to accommodate the difficulties of
practice as Mehmoona Akhtar a married Muslim woman aged twenty who had
experienced severe hip problems since she was a child says “I can’t sit on the floor
but I sit on a chair and read it.”
This gendered practising of the Islamic faith, was not accidental. Parents
encouraged their daughters more than sons to learn about the religion (Hussain et. al.
2002).
This process is not specific to impairment but part of a wider process,
reflecting broader changes in the experiences of South Asian young people living in
Britain.
Young women engaged with the religious values associated with their
parents’ homeland, more so than their male counterparts (Modood et al, 1997). The
father of Rukhsana Javed, a Muslim single woman aged nineteen who experienced
mobility problems arising from complications associated with kidney failure, wanted
all his children to learn about religion and go to Mosque: “It gives you peace of mind,
a sense of self-worth and it tells you who you are.”
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South Asian Women – Negotiating Identities
Muslims also took a more positive view of disability. The impairment was
seen to be given by Allah, who would also provide the family with the resources to
cope with the child’s disability (Atkin and Ahmad, 2000). Parents saw this as their
responsibility; the mother of Kausar Khalid, a single Muslim girl aged eighteen with
mobility problems, said “If God has given me this one, I’ll help her to do everything.”
Such sentiments were echoed by the parents of Naseem Javed a single seventeen year
old quadraplegic: “God has given us a child like this, so we have got to prove to Him
that we will look after her, because she is a Muslim and our daughter.”
Whilst the women did not go to places of worship, their religious identity was
important. These women were able to learn about Islam by reading at home and
talking with other family members. Moreover, most young people knew enough
about their religious and cultural values to feel they belonged to their religious
community and to behave ‘appropriately’. In many ways, the young women had as
much of an awareness of religious and cultural values as their female siblings. The
young women found identification with their religious affiliation particularly
meaningful. These women turned to Islam for help and guidance during difficult
times. Religion emerged as important in all of the girls’ lives. Two of the Muslim
women wore the hijab and had done so for quite some time. These women used
Islam as a source of strength: according to Miriam, a twenty seven year old with
arthritis, talking about her impairment, “The only way you can sort of gain strength
and carry on is by just through faith.” She admits: “It helps you lighten the load.”
There was a growing awareness of Islam among the girls as a form of
empowerment. They talked about the injustices women faced as bearers of their
culture and their Islamic faith, and were able to define a concept of Islam which was
not a culturally determined set of practices inherited from their parents, but one which
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South Asian Women – Negotiating Identities
was firmly based on the Islamic scriptures. The young disabled women used Islamic
principles to argue and convince their parents on several issues. Miriam Hussain, a
twenty seven year old with arthritis attributes to this her awareness of women’s rights:
“That’s why I've got a translated Quran in English, ’cos they say that man can treat us
like this, it’s not true”. The women’s knowledge of Islam framed their perspectives of
life and the discrepancies they experienced in everyday life.
Therefore religion
became a resource that they used to resist parental control.
Some of the Sikh families, however, came across more theological barriers to
religious practice. For some of these families, their child’s impairment was associated
with the sins of a previous life. Such a response could also inform the response of the
wider community, even if the parent did not specifically agree with such a view. The
mother of Rupal Bains, a twenty year old single woman who used a wheelchair,
explained that other people in the Sikh community believe she is being punished for
past-life sins: “It’s like the elders, you know, they assume that I’ve been punished for
something that I must have done, something wrong in my past life”. It is perhaps not
surprising that most of the Sikh young people did not usually subscribe to such
beliefs. To do so could be damaging to their sense of self.
What was significant about the Sikhs was that although they identified
themselves as Sikhs, they had a more negative view of religion. According to
Rajwinder Kaur (married, aged 26), who has mobility problems, “I don’t practise it. I
don’t like going to temple or anything, I just accept it basically. I don’t follow it.”
This opinion of religion was not specific to gender; the Sikh men also had similar
opinions, as did both sets of siblings. The parents talked abut religion as being of
some importance, yet for their daughters, with impairment or not, it did not have the
same significance. The daughters talked about being excluded from the religion due to
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South Asian Women – Negotiating Identities
their inability to access places of worship and the reactions they experienced from
others. Rajwinder Kaur added: “I go after a year or something, they’re thinking who’s
she? Where’s she come out of?” She feels very bitter at this: “I don’t think religion
to many young children is important any more, actually. They’ve got better things in
life to do than go to temple or whatever it is.”
MARRIAGE
Disability had an impact on traditional marriage patterns with the South Asian
communities. Traditionally, South Asian daughters are perceived as visitors within
parental homes who await the transition to their ‘real’ home with the husband’s
family.
Marriage also brought about a shift in authority from the father to the
husband, consequently women became the izzat of their husbands (Modood et al,
1994).
The female non-disabled siblings talked about marriage which involved
negotiation with their parents. This is part of a dynamic process reflecting broader
changes in the experience of Asian young people living in Britain (Afsar, 1989). But
for her disabled sister, impairment added another dimension, differences emerged
between the expectations of the disabled young person and their siblings. Young
disabled women had less chance of being married than their male counterparts who
were more likely to be engaged or involved in negotiations about marriage. The
prospect of marriage for a young woman with an impairment was virtually nonexistent; her physical impairment thus prevented her from fulfilling her traditional and
conservative role as a homemaker.
Parents with a disabled daughter talked about the devastating effect on her
marriage prospects, but with sons, it was a different case: there was more hope. The
mother of Naseem Javed, a seventeen year old Muslim who had been a quadriplegic
since the age of twelve, explains why “Within our culture, girls do not belong to the
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South Asian Women – Negotiating Identities
parents, they belong to the families of the husband she marries… although all parents
worry about their daughters, it’s even worse having a daughter like this.” The father
of Rukhsana Javed (Muslim, Single; 19) talked about the devastating effect having a
disabled daughter who experienced mobility problems has had.
Talking about
marriage, he says: “Who is going to marry someone like our daughter? If she was
normal, we would have got her married by now.”
The discussions with the female siblings about their disabled sister evoked
similar sentiments. They talked negatively about the marriage prospects for the
disabled sister and mirrored the viewpoint of their parents. For instance Rehana, the
sister of Humaira Saleem, a single Muslim woman aged twenty nine who lost the use
of her legs as a child, reveals the difficulty her sister will face in finding a partner:
“You wouldn’t get a husband to actually care for her, would you… she needs 24-hour
care… you wouldn’t find a man committed enough to actually look after her all the
time, take her to bathroom, give her a shower.”
What was interesting was the perception parents and siblings had of the
partner as not merely husband or wife but as carer. Parents and siblings continually
referred to the partner in the role of the carer, they wanted their sons to get married so
that their wives could take over the role of the carer which they had been filling.
However, this was different for the women, given the domestic expectations of
married woman. Family members defined the disability as a burden and undesirable
and unfair for a man. Being unmarried was therefore an accepted fact within the
family and seemed to be an inevitable consequence of having a disability.
From the perspective of the young women, they all saw marriage as a
desirable part of life, but none of them envisaged this as a real possibility. None of
the women had been asked if they would like to marry, nor had they even assumed
20
South Asian Women – Negotiating Identities
they would find a marriage partner. Yet in reality finding a partner independent from
family intervention was difficult (Hussain et al, 2002). The girls realised this and
began to assimilate the negative views perpetuated through their family, expressing
guilt at having a disability and the suffering they were causing their parents. One
respondent, Miriam Hussain, a twenty seven year old Muslim with arthritis, talked
about her mother’s disappointment in her: “Sometimes she gets upset, saying I wish
you were okay, you’re so pretty and this and that and the other, you need a husband to
take care of you.” This negative view from the family filtered down to the women
themselves. For instance, Jameela Yusaf, a twenty eight year old Muslim woman
whose mobility problems arose from a spinal condition, said: “I wouldn’t be able to
cope, I don’t think anyway… I don’t think it’s fair on the other person who you are
getting married to. I couldn’t see myself coping and bringing up a family and things
like a normal lady would be expected to do. I couldn’t do that, there’s no way.” This
was a view shared by many others, including Saira Iqbal (Muslim; Single; 22) who
had problems with her joints: “I don’t wanna get married, ’cos I don’t think I could
ever cope with, you know, married life… it’s hard work.”
Five women in total were married, and all but one of the partners came from
India or Pakistan (the one remaining migrated to Britain from Barbados). Two of the
five had married during their impairment, Rajwinder Kaur, a Sihk woman aged
twenty six who experienced mobility problems aged 28. Both had been married with
their physical impairment restricting their mobility, but had very different
experiences. Nazia felt lucky to be married. “people wouldn’t have given me a
marriage partner but because it was my dad’s brother’s son, he therefore agreed to
marry me”. Rajwinder Kaur experienced problems with her marriage and felt she had
to accept second best because of their impairment and believe their siblings were
21
South Asian Women – Negotiating Identities
likely to find more suitable partners. Rajwinder said that her sister got the better
husband: “Compared to my husband he’s much cleverer, he speaks English and
everything, he’s more westernised. Yes, I think I could have done better. I think the
only reason I ended up with my husband is because of my disability. I ended up with
him because of my leg. I know I could’ve done better.” She was on the verge of
leaving her husband and had informed her family of her intentions.
Rajwinder Kaur’s experiences were echoed by the other women who were
married. All the other women were all experiencing problems with their marriage and
believed themselves to be a burden to their partner. These women were married
before their disability was diagnosed or before they had limited mobility, yet they
talked about the effect of the impairment on their relationship. Sukwinder Kaur
(Sikh, married, 30), an MS patient, spoke of husband’s refusal to acknowledge her
disability because she appears ‘alright’ physically. He refuses to do any domestic
chores in the home, so she has to rely on her daughter or home help to clean her
home: “I have asked him to do it, but he goes why are you here? You are here to
clean up. I’ve been to work, I can’t be cleaning up.” He accuses her of being lazy:
“he thinks most of the things that I can’t do, I should be able to do, like looking after
the house and cleaning”.
Her husband has filed for divorce without informing her:
“He wants a divorce and still to live with me and get married and bring another
woman in the house.”
Parents felt it was easier to bring marriage partners from overseas rather than
try to secure partners in Britain. By comparison, able-bodied siblings seem more
likely to marry someone from Britain, although several were considering marriage
partners from overseas. There were various reasons for seeking overseas marriage
partners and most seem to have been informed by the young person’s disability. First,
22
South Asian Women – Negotiating Identities
partners from overseas were seen as not having high expectations and therefore more
willing to enter Britain and look after a disabled person. This is perhaps ironic, given
that young people feel South Asian cultures are too traditional (Hussain et. al. 2002).
Second, young people and their parents remarked that by considering marriage
partners from South Asia they were offering entry in to Britain: a much sought-after
option among those living in India and Pakistan. This, however, could have its
disadvantages. Several young people and their parents were concerned that some
prospective partners were using marriage as an excuse to enter Britain and had no
intention of trying to make the marriage work. Entry to Britain was felt to be a
particular issue for prospective husbands. This is a particular worry for Miriam
Hussain, a twenty seven year old Muslim with arthritis. She has been engaged twice
but was worried that her prospective husband is using it as an excuse to settle in
Britain. She does not understand why anyone would want to take on a wife with an
impairment “I would never be sure that, if they just did it just to get a ticket over here,
so I wasn’t too keen”.
Although the bulk of the women were reconciled to the idea of not marrying,
there were others who were adamant about finding a partner. These women talked
about their desire to marry even if it meant having a partner from outside their culture.
Several had concealed relationships with non-Asians from their families, to avoid
offending traditional sensitivities. Humaira Saleem, a single Muslim woman aged
twenty nine who lost the use of her legs as a child, talked about her three-year
relationship with her White boyfriend, whom she met at the local community centre.
Her reluctance to enter into a relationship with a South Asian man is clearly evident
and has to do with the control she anticipates: “The way they treat their wives, tell
them what to do and what not to do”. Her relationship was conducted clandestinely at
23
South Asian Women – Negotiating Identities
the centre. She also visited his home and met his parents, but the relationship ended
when she asked him to change his religion: “I wanted him to change his religion and
to become a Muslim, so I could teach him the Quran… and he comes out with it, he
doesn’t want to do that and then he told me to change my religion… I couldn’t.” Her
parents knew nothing of the relationship, but she knows their likely response: “If my
family had known they’d have probably killed me!”
Marriages within these families were being handled in a traditional way.
Negotiated and arranged marriages took place.
Few parents or young people
suggested that their impairment would fundamentally alter traditional marriage
patterns. The mother of Rupal Bains, a young single Sikh woman who had mobility
problems, was one of the few parents who did. Her primary concern was to ensure
her daughter married a husband who would look after her: “I would never arrange for
her, because then that would be unfair… we could find her somebody but we do not
know if he will care for her. So it’s best she found somebody herself” This was an
exception, a mother encouraging her daughter to pursue a love marriage and leaving
selection entirely in the hands of her daughter.
In other cases there was scepticism about romantic love and western-style
marriage, with some citing religious reservations. Miriam Hussain, a twenty seven
year old with arthritis said: “I wouldn’t go out with anybody. I always have male
friends, but I won’t let them pass that limit.” Her reasons are embedded in religion: “I
don’t wanna, ’cos it tells me not to in the Muslim religion.” But those who were on
the lookout anticipated problems. On the other hand, a few of the women who had
displayed a desire for marriage anticipated problems. Many who would like to get
married envisaged problems not from the family but from prospective partners.
Rakinder Sohota, another Sikh interviewee with MS admits finding a partner would
24
South Asian Women – Negotiating Identities
be problematic due to her disability: “I don’t want a situation where I do meet
someone and I’m having to tell them about my disability… I’ve found with
people…they had partners who’ve left them because of their disabilities.” Because of
this, “I think I’ll just be on my own, I mean I’d like to sort of have a partner or get
married, but I can’t see myself doing it”.
CONCLUSION
The meaning of disability in British South Asian communities is neglected and
remains poorly understood in current debates in disability studies. These debates tend
to assume a universal social model of disability that has been criticised by disabled
women from a feminist perspective. However, such criticisms created their own new
universal White subject often neglecting the specific circumstances of disabled ethnic
minority women especially in relation to the regulation of sexual behaviour, marriage
and religious practices. This paper has attempted to redress these imbalances through
the analysis of empirical data on these issues.
All the young women interviewed were capable and efficient, active, vigorous
and energetic, but at the same time appeared submissive and compliant as each
limited their behaviour to some degree in order to meet cultural expectations and
avoid conflict with their parents. All are aware of their parent’s expectations for them
but also consciously motivated by their own interests and desires. From the disabled
young person’s point of view her experience was different to that of her able-bodied
siblings. For both Muslim and Sikh women marriages were difficult to arrange or
negotiate and the minority who had husbands sometimes felt that they had married
‘less well’ than their sisters, often marrying new migrants rather than British born
husbands. However, despite cultural expectations that all South Asian women would
25
South Asian Women – Negotiating Identities
get married, the likelihood for many young women in this study was that they would
not get married.
All the young women interviewed had internalised the appropriate attitudes,
values and forms of social behaviour as dictated by their ethnic, cultural and religious
values. These values became an integral to the identity of these women, more so than
their male counterparts (Hussain et al, 2002).
Social control therefore was not
exercised through punishment for transgressing against society, but through
internalised norms often associated with izzat. To a large extent, their narratives are
similar to their able-bodied siblings in this respect. The family ultimately had a major
role to play in these young women’ lives. The parents often had their daughters’ best
interests in mind and these forms of control ensured the young women stayed within
the ethnic and cultural framework; it became a means of social and family control.
Religious affiliations are of increasing significance among British South
Asians now challenging the notion of a ‘South Asian’ identity.
Religion was
especially important for the Muslim women in this study. However, despite positive
views amongst Muslims towards disabled people organised religion in Mosques and
at Sikh temples failed to cater adequately for the needs of the young disabled women.
Overall the empirical findings suggest that there is range of issues that are specific to
the positioning of young South Asian disabled women: around sexuality and control
of the body, real marriage prospects as opposed to expectations and access to
collective religious practices.
Exploring identities is a complex undertaking, especially when the potential
axis of identity claims are so numerous and contested as in this study. The young
women’s opinions and views presented here offers no support to notions of singular
identities or of a hierarchies of identifications, it shows that identity claims of disabled
26
South Asian Women – Negotiating Identities
young people were negotiated and contingent, allowing some freedoms within
contexts in which ethnicity, religion, gender, social status, racism, generational
relations and the meaning of being disabled were important considerations. It also
suggests that the findings may apply to South Asian groups more generally.
27
South Asian Women – Negotiating Identities
Acknowledgments
The support of the Joseph Rowntree Foundation which funded the research upon
which the paper is based upon is gratefully acknowledged, in particular Dr Emma
Stone. Thanks also goes to Dr Karl Atkin, Professor Waqar Ahmad and Dr Paul
Bagguley.
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