Blog Humare Avaaz – Our Voice (Part 3): 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.
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DEPARTMENT FOR SNAKES & LADDERS?
Fionn is 60, and has two long-term conditions for which there are no effective treatments. He wanted to be able to call on a social safety net; the best thing on offer at the moment seems to be a spectacularly uncomfortable hammock.
I’m exactly the same as anyone else who’s gathered up a lifetime of training and experience. I have a lot of skills. People come to me for advice. They offer me work. They offer me money to do that work.
And I can do the work, but it makes me ill. I don’t mind; I’ve always been ill, and I love my work. I just have to stop every now and again till I get better, then I can do some more.
Now that I’m older, those pauses have got longer. I might work for five months and have to stop for another four. The trouble is that when the income stops, the bills don’t. I live alone, so I have to claim benefits.
When I do get ill, it can be sudden and severe. One day I can be leading a seminar, the next I can’t fetch a bowl of cereal without help. What I need at this point is a benefit system that that can cushion me during those down times, and enable me to get back to work again as soon as my health allows. Instead I’m faced with a disability benefit system that appears to be based on bizarre assumptions:
“Disabled People Will Avoid Claiming If You Make It Inaccessible Enough”
So, I have to scan a 50-odd page ESA booklet because I can’t write by hand, type 6,000 words, print it out, and then transport it a mile to a post box.
“Things Medicine Can’t See Are Likely Fake”
So, I have to have to demonstrate the invisible, to someone who’s been told I’m probably lying.
“Ill People Can Stay In Work If You Just Make the Alternative Unpleasant Enough”
So, the first 13 weeks of my claim are paid at such a low rate that I can’t afford to heat my home, fund my special diet, or keep on the business services that mean I can return to work easily in future. The stress of the mounting debt delays my recovery.
“Ill People Either Get Better Or Die”
Because neither outcome has occurred I will have to repeat the whole miserable cycle over and over again, year after year, even though my condition(s) has not changed. And who does this benefit?
So why don’t I just use the Permitted Work Scheme? It allows me to work a few hours a week, and even to keep some of the money. I thought it was a great idea when I heard about it. Then I asked for the form.
What is your job title?
“It depends. Every project I take on has a different title. I’ve been working since I was 15, and I can do quite a lot of things.”
How many hours per week do you work?
“I’m self-employed. I can’t work consistently, so I can’t build my business up, and I never know how much work I’m going to be offered. I might go three weeks without a call, then get several offers at once.”
How much do you earn?
“It depends who I’m working for. My average pay’s a bit low for someone with my experience, but I do sometimes get well-paid projects, especially if the client’s desperate for help. But I’m also keen to support new businesses that can’t offer much. So, anything from £15 to £45 per hour.”
I was warned against saying I that can earn more than minimum wage by a welfare benefits officer, who told me it may lead to questions about why I’m in the Support Group.
It’s deeply depressing that DWP still hasn’t realised that severe disability doesn’t preclude academic achievement or good business skills, but I saw his point. Trouble is, I can’t lie about my earnings, yet clients would think I was mad if I asked them to pay less. And there are now no specially trained Jobcentre disability advisors to build relationships with individuals and gain an understanding that they’re chronically ill, not trying to play the system.
If I can’t return to my Employment & Support Allowance claim when I get ill – without a financial punishment for trying to go back to work, without having to write the same 6,000 words on the same form about the same conditions, and without another stressful and humiliating assessment – then it’d be lunacy to keep going back to work.
Why did I spend years doing it? Truthfully, I don’t know.
But I’ve had enough now. My talent, my determination, my courage, and my optimism are no match for public policy that confuses equality with treating everyone the same, and where my disabilities are regarded as excuses put forward by work-shy scroungers (and where a 40-year continuous work history evidently doesn’t suggest otherwise). It’s beyond the realms of possibility that either the welfare system or employers will begin properly supporting disabled people before I retire, so I’m taking the safe option now.
I’m giving up trying.
Author: “Fionn”
For further information please see the project Chronic illness citizenship mobilising collective voice social change
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Peer-led research reveals how to make peer support a highly effective addition to mental health services.
On Thursday 8th Febuary, peer-led charity Inclusion Barnet launch new research which reveals how to make peer support an effective addition to mental health services. The report finds that in order to be effective, the implementation of peer support must be accompanied by an understanding of how the values of peer support can be embedded within the working contexts of each individual team and service. The report also explores those values, capturing the principles of person-centred practice at the heart of peer support.
Peer support is a fast-moving global trend in mental health service delivery; the numbers of people who have experienced, and learned to manage their own mental health difficulties, being employed to support others facing similar struggles, grows year on year. Yet, peer support remains a controversial and contested practice. It has often fallen foul of those who are suspicious of a trend which places value on “lived experience” rather than professional qualifications and attaches value, rather than stigma, to the experience of mental-ill health. Even those who advocate for its efficacy agree that its specific benefits are difficult to identify and describe, let alone deliver and quantify.
Inclusion Barnet’s research was funded as part of the DRILL (Disability Research on Independent Living and Learning) programme, the world’s first major research programme led by disabled people. The resulting research sheds new light on what is valuable about peer support and how it can be implemented as an effective form of practice. It shows that embedding a ‘counter culture’ of practice such as peer support within traditional statutory organisations requires skill and strategic planning, as well as an understanding of how to translate the values of peer support into everyday practice interactions. It lays out the blue-prints for implementing effective peer support for organisations that are new to peer support or are struggling to get it right.
Caroline Collier, CEO of Inclusion Barnet noted: “Peer support is a growing trend in statutory service delivery and a vital element of any person-centred mental health service, however people struggle to understand what it is, and how to make it work. As a peer-led organisation, we felt it was time to undertake a robust piece of research which could explode myths and serve as an accessible and practical guide for comissioners, managers and peer support workers. Increasing the efficacy of peer support is in everyone’s interests.”
The report is based in a qualitative study, using interviews with 36 peer support workers and their colleagues from all over the country and from different sectors. It includes a thoughtful exploration of what peer support is and the benefits of using lived experience in service delivery. It also includes clear recommendations for the implementation of peer support within organisations: including strategic planning, recruitment and supervision.
Dr Julie Repper, Director of ImROC (Implementing Recovery through Organisational Change) says: “This report captures so much that is unique and important about peer support and contains some very useful recommendations. I want to make it essential reading for all of our peers and their teams”.
The report is available on the project’s webpage
For further information visit: www.drill.org.uk or www.inclusionbarnet.org.uk
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Blog Post: DRILL – The Next Steps
Being involved in a project like DRILL is both exhilarating and frustrating in almost equal measure. Recently the exhilaration has been at the forefront, partly because this month we move another step down the road by announcing over £1 million for another ten research and pilot projects across the UK which will help support disabled people to live independently.
The frustration is inevitable when you look at the environment organisations like ours (Disability Rights UK, Disability Wales, Inclusion Scotland and Disability Action Northern Ireland) operate in.
Disabled people’s organisations struggling to stay afloat, disabled people battling for benefits and services and a new secretary of state with a questionable track record when it comes to disability rights.
Part of my frustration comes from us having to decide which great projects don’t get the funding from DRILL they applied for – and it’s safe to say that frustration was shared by the group of disabled experts who made the final funding decisions. We needed a mix of projects which offered up a decent cross-section of geography, impairments and subject areas, and that meant that some really fantastic ideas didn’t make it over the finish line. We are sad about that and hope that some of those may find funding streams from other sources.
On the flip side, it’s exhilarating to look at the depth and richness of the projects which have been successful in their applications. People have come to the DRILL project armed with passion and experience and commitment and creativity. From researching accessible toilets (Scotland) to finding ways for self advocates to earn money (Wales) through to getting better access to the justice system for deaf people (Northern Ireland) and finding out why we don’t have more disabled foster carers when the fostering system has a huge gap to fill (England); and that’s just four of the ten successful that will get underway this year. If you want to find out more about the projects DRILL is funding, do go to the project page, which has all the details.
The £1 million or so for these new projects also marks a change in emphasis for DRILL. Up to now, much of the focus for us has been on scrutinising projects and working with organisations to help them develop their funding bids. In 2018, our focus moves to the myriad of projects and research which are underway.
We’ll see some of our early projects finish and produce resources and findings which will help support disabled people to be more independent. We’ll also see some interim results from other projects which will help us build our knowledge and understanding of the barriers disabled people face and how they can be challenged.
There are exciting times ahead!
Kamran Mallick
Chief executive
Disability Rights UK
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Blog Post: Humare Avaaz – Our Voice (Part 2)
Read Blog Post: Humare Avaaz – Our Voice (Part 1)
‘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?’
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Blog Post: Humare Avaaz – Our Voice (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 … 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 …
Stay tuned for part two of the blog in the New Year!
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November blog post: reflections on DRILL so far
10 new research projects led by disabled people: reflections on DRILL so far.
We’re now beginning to see the fruits of our labour over recent months (and years!) in getting the DRILL project up and running.
Early in my career a group of mental health service users did some research into life in a long-stay hospital. Academics were already studying people’s mental state and the impact of particular treatments. The service users found that often people living in the hospital were expected to wear clothes that were not their own. They understandably hated this, and the research led to a change of policy.
40 years on, we are looking for present day solutions that come from the perspective of lived experience.
DRILL was always an ambitious project, but we knew when we started to get such good quality applications we were right to aim high.
We have had more than 200 applications thus far, seeking more than £15 million in grants – that’s nearly 40 times the amount of money available for this round of funding. This inevitably means we’ve had to disappoint a lot of people who submitted thoughtful and interesting projects for the central research committee to consider. We’re sorry we’ve not been able to say ‘yes’ to more projects at this stage.
It does show, however, the level of appetite there is amongst disabled people to build our own knowledge base and test out ideas which support disabled people to participate fully in society. We are both heartened and excited by this.
The 10 projects from across the UK we have picked in this first round of funding cover a multitude of subject areas. They include projects on the support needed for decision making by people with learning difficulties through to the design of peer to peer support programmes for people with mental health problems. There’s also the development of toolkits for professionals working with disabled women and girls who have experienced domestic abuse to looking at ways disabled people can participate in public life.
We’re pleased to be funding projects for groups of disabled people such as those with dementia, and those with learning disabilities; these groups often get left behind and struggle to get their voices heard by service providers or service commissioners.
The common thread to all these projects is that they are being driven by disabled people, for disabled people; these are core criteria when it comes to getting funding from the DRILL programme. The projects are rooted in questions and approaches which are designed and delivered by disabled people – questions and approaches which may be different to those undertaken by non-disabled people.
We hope this will lead to new insights and ways of looking at things which will help develop new solutions to the barriers disabled people face. But we also hope disabled people’s organisations will develop new partnerships and insights into building evidence; and researchers will learn more about how to work in genuine co-production with disabled people. We want the work funded by DRILL to be long lasting, and have an impact on future policy and practice development.
This is the first tranche of Big Lottery Fund money to be made available, worth around £400,000. We’ll be announcing a further £600,000 of awards in the spring of next year, which will be larger projects worth up to £150,000 each.
The journey has begun. We look forward to learning great things as this fantastic project unfolds over the coming years.
Liz Sayce is chief executive of Disability Rights UK, which is providing support for DRILL in England.
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DRILL Roadshow Reports
The DRILL Programme, through its national partners, has now completed over 18 DRILL Roadshows across Northern Ireland, Scotland, Wales and England. The purpose of which was to determine how research and piloting would contribute most to achieving independent living.
The DRILL Roadshows were based on the principles of co-production involving Disabled People Organisations (DPOs) from across the impairment spectrum, disabled people, academics, policy makers and senior practitioners.
Over 640 people were directly engaged and many more indirectly through social media, with disabled people in the majority. National Advisory Groups (NAGs) received a draft report and further engagement was undertaken to satisfy the equality and diversity values of DRILL.
The 4 Reports will now inform the basis upon which the Programme will proceed and the reframing of the DRILL Themes for research and pilot projects.
DRILL Roadshow Report – Northern Ireland
DRILL Roadshow Report – England
DRILL Roadshow Report – Scotland
Adroddiad Sioeau Teithiol & Cysylltu Cymru
Thank you to all who have participated so far with DRILL. Please stay in touch.
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