‘So, why do you want to research into the barriers to independence faced by disabled Asian women, surely everyone knows what the barriers are?’ Well, on an anecdotal basis and having lived the issue for some 25 years we can understand why the question might be asked. Triple disadvantage: disability, a BME group, being women - possibly a fourth, stigma/discrimination within their communities both as women and specifically as disabled women. One problem however, we didn’t think anyone had actually asked disabled Asian women, hence the project name: Humare Avaaz – our voice. Our desk research has shown this to be so.
This finding poses a possibly worrying question. Has policy on and support for disabled Asian women been based on conjecture and assumption, e.g. that disabled Asian women benefit more than women from other communities from a close knit and extensive family support network such that culturally sensitive social care support is not required? Does support take account of the diversity among Asian communities? Indeed, previous funded community research of ours indicates that extremely poor wellbeing/health can be the result of exploitative support expectations of ‘hidden carers’, i.e. the so-called network has caused a form of disability.
On to the next possibly contentious point. We run a day care and development centre. We accept that ‘day care’ is anathema to the social model but we are pragmatists. If a fully functional family support network was there, perhaps we wouldn’t exist. In our experience, while such support networks may exist, they operate at a social level and cannot meet more complex and formal needs.
So, what does the social model mean to our clients? Does the social model and political objectives within the disability movement have any relevance to our project and research subjects? They certainly do for the project team because we understand the context, it’s our job to. But this is co-produced research; what do our co-researchers and research subjects think. The answer is ‘not a lot’. In fact, the very concept of independence is novel for most, even having discounted those whose intellectual impairments, limited education or widely ranging social factors prevent them fully considering the concept. Each focus group has presented the same issue; how to research into barriers when ‘Barriers to what?’ requires extensive explanation and discussion. Some, of course, are ‘politically’ aware but most have lived a life of systemic dependency with a voice that has never been heard.
Independence in terms of being able to go shopping, do the housework, get married is perhaps not what we expected to hear but it‘s what we’ve often heard. What has politics got to do with such issues? Is there a disconnect between some disability lobbyists and the views of at least some disabled people? Our role is to present what our research subjects tell us, not to be a proxy for them or lobbyists within the disability rights movement. It’s important that what we might wish to lobby for in other circumstances does not influence our co-research or influence the conclusions that we and our co-researchers draw from its findings.
Next episode – ‘What is research?’