Restrictive expectations about the social roles of disabled people need to be addressed if people with learning difficulties are to
achieve their own goals. Attitudes within different communities may contribute to the exclusion of disabled people from work, marriage, education, and from access to public places (Bignall and Butt 2000, Begum 1992, Westbrook et al 1993). Similarly, expectations about the role of carers may restrict the opportunities available to people with learning difficulties. An emphasis on ‘loving duty’ may, for example, preclude the success of programmes that would help someone acquire life skills and independence (Bignall and Butt 2000, Westbrook et al 1993).
Studies have shown that negative attitudes to disability have not been specifically addressed within minority ethnic communities. Westbrook found that, in some communities, people may feel greater shame in respect of a disabled family member and attempts may be made to keep the existence of such members a secret (Westbrook et al 1993). At a broader level, a study of deaf South Asian children found that many South Asian families reported less acceptance of their deaf child by the South Asian community than by members of the White community (Chamba et al 1998). Bignall and Butt reported that young disabled people feel such prejudice must be dealt with if individuals are to receive enough support to develop more independent lives (Bignall and Butt 2000). Katbamna
et al (2000) report that carers, too, suffer from these negative
attitudes and are often left unsupported by both services and their extended families.
Negative attitudes are compounded by a lack of information about the facilities and opportunities that are available to people with learning difficulties. These reinforce the notion that individuals with impairments are a ‘burden’. Low take-up of services may be in part a consequence of negative attitudes towards disability – this does not, however, remove the responsibility for addressing such attitudes on the part of service providers (Begum 1992, 1995). In addition, there is a need for carers to be trained in practical skills associated with encouraging independent living skills. This could make their role easier to manage and help their relative become less reliant on them (Baxter et al 1990).
Poverty is a further factor which may deter minority ethnic families from encouraging financial independence for a person with learning difficulties. Poverty may mean that families may not be able to provide financial support to disabled relatives living away from home. People with learning difficulties themselves may not be aware
of the benefits being received on their behalf and a family’s reliance on these benefits may act as a disincentive to enabling more financial control. Such concerns are often accompanied by fears about the type of care and support that would be provided away from the family home, whether this care and support would be appropriate in relation to the family’s culture or religion, and worries about possible sexual impropriety and vulnerability. All these issues would need to be addressed as part of the context in which people with learning difficulties must negotiate independence.
Barriers to independence from within their own communities are compounded for many by racism. Discrimination operates across the fields of education and employment and young people can experience great difficulty in joining adult society (Bignall and Butt 2000, Doyle et al 1994). Research suggests that, not only do disabled people encounter a negative response when seeking employment, but also racial prejudice appears to play a significant part in their being made redundant from jobs that they have managed to secure (Doyle et al 1994). Our own research showed that people with learning difficulties experienced racism on the streets, in shops and on work placements.
Sexuality and the perception of appropriate adult roles are both issues which need to be addressed. The discussion of sexuality is surrounded by taboos, more so in some communities than others, and people with learning difficulties may have little access to relevant and necessary information. Communication about such issues and about individual needs may also be difficult and this could hamper the disclosure of abuse. Appropriate roles may be perceived differently in individual families; one project worker referred to a parent who would not accept that his daughters had a learning difficulty and was arranging their marriages with partners from abroad. At the same time, the literature shows evidence of other dynamics, particularly within South Asian communities, where marriage may not be seen as an option or there is resistance to the idea of marriage between two people with learning difficulties (CVS 1998), as may indeed be the case within White communities, too. Equally, marriage may be more easily accommodated where the aptitude or skills of the marriage partner are only one part of the whole equation. If marriages are a key part of re-affirming or reflecting kin relationships rather than emotional involvement or attraction between the couple, then South Asian cultures may be more accommodating of disabled people. Without empirical data, however, this remains an interesting but hopeful hypothesis.
Work on sexuality is fraught with problems, and not only in relation to people from minority ethnic communities. An experienced
sexuality advisor related a difficulty she encountered when working with a group of people in a supported employment project. The parents of a young Hindu girl gave their consent to their daughter being given information about sexuality as part of the development of self-assertiveness within the project. After the girl’s brother got married, she herself became angry that she was not getting married and then developed a relationship with a young White man from the project. This transgressed her parents’ wishes and caused extreme problems within the family. While such a difficulty could occur with White families with strong moral beliefs, the experience highlights the need to balance individuals’ and families’ wishes, given that, in the advisor’s words, “the young person is rooted in their own culture, family and beliefs”. Moreover, there is a need for accessible and appropriate information for people with learning difficulties. Staff working in this field have complained, however, that insufficient resources were allocated to providing information about sexuality and personal relationships to people from minority ethnic communities.