HUMARE AVAAZ : PART 3
Research as a transaction?
Research as a transaction?
Whether it’s a consequence of experience, culture or education, different Asian groups have presented different research experiences. This is a truism of course. Asian women in East London have proved interesting. We already knew from a small community research project into ‘hidden carers’, i.e. those not supported by/known to social services, that they would be hard to engage with and that ‘disability’ would include the consequences of extremely poor wellbeing. So it proved to be.
We engaged by offering ‘Chat & Chai’ sessions in Housing Association community centres and gradually built up a regular and worthwhile research cohort. Having gained the confidence of some of the most disenfranchised women we’ve met, at least in our opinion, the conversation went something like this.
‘What is research?’ Even our project worker, an experienced community interpreter, was a little taken aback. After much discussion, we settled on ‘to have an extended discussion’ as being something we all could understand.
OK, off we go! ‘Why do you want to know?’. ‘Because we do’ clearly wasn’t going to be a sufficient answer. The question was unexpected. Our immediate response was a combination of mild irritation and a little amusement. After very brief reflection the significance of our project’s name - Humare Avaaz (Our Voice) - was again brought sharply into focus. The women genuinely didn’t know why we would want to know; no-one had ever asked them about their wellbeing, their social/economic conditions, in fact not about anything much at all. The whole thing was novel for them, they had no appreciation of the value of their experiences. The reasons took a while to explain, outcomes couched in research speech don’t translate well. The women became quite enthused once they understood our purpose. However, most did not want to be identified or recorded. There was an underlying wariness, reasonable in the context of their experiences.
Off we go again. Actually no. ‘What do we get in return’. We certainly hadn’t anticipated this. But fair enough, they were contributing valuable information to us so were entitled to ask, I guess. Research for its own sake was possibly a step too far in the process of engagement. Like many organisations, we’re used to providing advice and advocacy outside of contract or funding remits so we did our best and off we eventually went!
And it was a valuable exchange.
HUMARE AVAAZ : PART 2
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.
‘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?’
HUMARE AVAAZ : PART 1
Humare Avaaz – our voice. We thought it was a great name for community research into the barriers to independent living faced by disabled women in London’s Asian Communities. And so it has proved to be. However …
Humare Avaaz – our voice. We thought it was a great name for community research into the barriers to independent living faced by disabled women in London’s Asian Communities. And so it has proved to be. However … It’s funny how you underestimate or don’t anticipate things! The Asian People’s Disability Alliance (APDA for short) is a true DDPO. It was founded on the principle of co-production, or whatever it was called 25 years ago. We have an experienced project manager with an academic background and a well-known and experienced lead researcher, an expert in the field. What could go wrong? Well nothing actually went wrong, in fact the reverse, but boy, what a learning curve. Talk about tales of the unexpected.
‘This should all be reasonably straightforward’, said he. The methodology was simple and tried and tested. The implementation plan was elegant and the budget was sufficient. However, none of us had been involved in co-produced community-research in which the co-researchers would be disabled, few have is our understanding. Perhaps we should have seen it coming, financially we had anticipated appropriate support costs but the best laid plans etc.
It’s just the way it is. It has proved far more time-consuming than anticipated to arrange training, focus groups and interviews etc. only to have to change plans at the last moment for perfectly good reasons. Oh for the simplicity of quantitative research! But that would achieve very little for Humare Avaaz.
We also underestimated the interest our own service users would bring to the initial focus groups, designed to set the agenda. Interest isn’t really the right term; more a release of pent up frustration at not having been listened to for, in some cases, decades. Humare Avaaz really is a great, even emotive, name.
A carefully prepared-for first focus group, prepared for in the sense of structuring it around reasonably expected responses – we’ve doing this for a while after all – not in the sense of the antithesis of co-production, was ‘interesting’. Money spent on an iPad and a note-taking app with a synchronised recording facility absolutely saved the day. We naively thought that reasonable meeting protocol would apply! Just as well all present were happy for the groups to be conducted in English! On reflection, why would we assume that that the hitherto voiceless would follow the rules of those easily heard! Such a meeting was a complete novelty.
Just when we thought we had sorted out initial teething problems, one of our original partners pulled out – they had lost their core grant funding. This delayed the steering group but was fortunately easily solved with the proactive support of Disability Rights UK.
So, what is our co-produced meaning of ‘independent living’? What are the barriers faced? It is our voice after all. Next time …
Drill Research Report into Barriers to Independent living faced by Asian Women. Humare Avaaz (Our Voice)
In 2017-18 APDA was funded by Disability Rights UK/Big Lottery to research the barriers to independence faced by disabled Asian women in the UK. Our research was part of Disability Rights UK’s DRILL project (Disability Research into Independent Living & Learning). Humare Avaaz was one of the first 10 projects to be funded.
In 2017-18 APDA was funded by Disability Rights UK/Big Lottery to research the barriers to independence faced by disabled Asian women in the UK. Our research was part of Disability Rights UK’s DRILL project (Disability Research into Independent Living & Learning). Humare Avaaz was one of the first 10 projects to be funded.
The research questions were:
1. What are the systemic attitudinal barriers to independent living faced by disabled women in London’s Asian Community?
2. What is the relative importance of each of these barriers from the perspectives of Asian women and their communities?
3. How have women overcome these barriers?
4. What policies and support are needed to enable more disabled Asian women to overcome these barriers?
5. How best might these barriers be removed over time?
Research overview
The research focused on Asian women whose disability fell into one or more of the following broad categories: physical disability; learning disability; mental health or long-term health condition as a result of their status, for example as an unpaid and unsupported carer.
We gathered the life experiences and views of a representative population of disabled Asian women from different communities to confirm or refute common assumptions: ‘experts by lived experience’.
We documented positive outcomes and success stories where disabled Asian women had overcome barriers and whose experiential knowledge offered lessons or suggestions for changes to social policy.
Importantly, our research was co-designed and co-produced, which means that we involved disabled women in both its concept and planning and in its delivery.
None of the women involved had ever been asked for their views and experiences before. The research title – Humare Avaaz (Our Voice) – was therefore particularly apt.
Our report
Follow the links below for our Report, an Executive Summary, a presentation about our findings and three ‘Blogs’ written during the research.
If you want to find out more about the work of Disability Rights UK and its DRILL project, follow these links: