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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“Legally Disabled?” Transforming the culture of the legal profession
Why are disabled people seemingly unexpected in the legal profession and what can we do to create a culture of inclusion and access?
These are the questions that the Cardiff University based “Legally Disabled?” research team are setting out to answer. Working in coproduction with the Lawyers with Disabilities Division of the Law Society, the researchers held a series of focus groups around the UK with disabled legal professionals. This helped to identify the key issues experienced by disabled people in trying to get into the profession and then progressing their careers once there. The team are now looking for individuals to participate in one to one interviews that can explore these issues in more depth.
This is the first project of its kind that focuses on disabled people in the legal profession and hopes to begin some much needed conversations about addressing barriers and promoting equality and inclusion.
Disabled people working in other professions may well experience similar barriers to career entry and progression as those in the legal field. The researchers hope that the findings of this research will be transferable to other occupations. Much policy attention is focused on getting disabled people off benefits and into any work, regardless of whether the work is suitable, accessible or good quality. It’s crucial that employment policies support disabled professionals to progress their careers and retain high quality employment. Very little research currently exists to document the experiences of disabled people in professional careers.
Disabled people seeking employment or working in the legal profession are an untapped resource. Their lived experience of disability means they have strong ambition, tenacity, determination and excellent problem-solving skills – all qualities that bring great benefits to employers.
However, findings suggest positive experiences of support, good attitudes and appropriate reasonable adjustments are something of a lottery.
Key Findings:
Entering the profession
- The profession is generally poorly equipped to anticipate reasonable adjustments to accommodate disabled candidates who apply for a training contract or pupillage. Lack of part-time training contracts is one such barrier.
Disability awareness
- Discrimination and a poor understanding of reasonable adjustments and how impairments and health conditions can vary, impacts heavily at the interview stage. This creates disadvantage and reduces opportunities for entering and progressing in Law.
Disclosure and seeking reasonable adjustments
- A large proportion of focus group participants reported instances of discrimination associated with their impairment. This creates a reluctance to disclose an impairment or health condition which in turn prevents individuals from accessing support.
Working culture and expectations
- Inflexible, often outdated working practices and the absence of imaginative job design, limits access opportunities for disabled people and career progression.
- Profitability and competition drives vast sections of the profession, disabled people feel they are unfairly viewed as not being ‘profitable’, productive or capable of meeting targets. The valued added by disabled people can be overlooked.
The good practice
- There are early indications that examples of good practice are influenced by sector of the profession, size and location of firm and the role of equality clauses in procurement contracts.
- Strong role models, supportive senior colleagues and the presence of mentors and networks are important factors for enabling career progression.
There are commonalities with other groups, such as women and those with caring responsibilities. Improved opportunities for flexible working and inclusive workplaces benefit the wider workforce and clients. The lessons learned from this research will also be transferable to other professional occupations.
How to get involved
If you are (or were) a disabled legal professional and would like to contribute through a one to one interview, you can find out more on www.legallydisabled.com or contact the researchers on info@legallydisabled.com
However, the research is independent of any professional association, regulator or employer and your anonymity is assured at all times.
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CARP Collaborations: From existing to living
Today young people with learning disabilities are delivering powerful messages to Welsh politicians about the social isolation and social segregation of their peers.
Young people with disabilities feel they face many prejudices which harms their life chances and well-being. They feel they are too often ‘just existing’ rather than living a good life. They face problems of isolation, bullying, separation from communities and lack of opportunities. These are the messages that young disabled people will be sharing with Assembly Members and policy makers in the Senedd today.
These messages are captured in an important report published today by C.A.R.P. (Community Action in Research and Policy) Collaborations in partnership with The Building Bridges Project. In an innovative and unique research project, funded by the Big lottery Fund through the UK wide DRILL research programme, C.A.R.P. Collaborations has trained and employed 8 young people with learning disabilities as peer researchers. These peer researchers have worked with 85 young people living in the Gwent area to investigate patterns of friendship and social isolation among young people with learning disabilities in transition to adulthood.
A peer researcher explains how “we tried to find out what support is needed, how we can move from the experience of ‘existing’ into the experience of ‘living a full life’. We wanted to look at friendship patterns and how they contribute to ‘having fun’ and ‘having a happy fulfilled life’ and how a loss or lack of friendships can create loneliness and ‘unhealthy lives’”.
They continue, “Today we want to share our findings with those who have the power to make things happen for young people with learning disabilities.”
The young people highlight how they found that life was still a daily battle for many young people with learning disabilities. For example, they found evidence of bullying and hate crime.
“Many young disabled people were being goaded to do things that they did not want to do, baiting and teasing and cyber bullying. These experiences lead some, young people to drop out of mainstream education, some were too scared to go out in their neighbourhoods”.
It doesn’t stop there, young people with learning disabilities are also more likely to experience or be at risk of social isolation and exclusion. They rely more heavily on parents and grandparents and carers to help them get to see friends. They also find they make friends with people at projects but then lose contact once those projects or schemes end. This leaves many only able to keep in touch with their friends electronically.
The peer researchers also want to highlight how young people with learning disabilities feel more needs to be done through the education system to help young people with learning disabilities develop personal aspirations and help find work. For example, the researchers found, “young people with learning disabilities don’t get the opportunity to undertake work experience at the same age as non- disabled peers.”
Julie Morgan AM advocate for children’s rights and cross- party group chair of children and young people’s assembly members group said, “I am delighted that the peer researchers have chosen to launch their findings at the Senedd. It is so important that Assembly Members get to hear the young people’s important messages first hand and I hope other young people with learning disabilities will take inspiration from their work.”
Vikki Butler, Co-Director of CARP Collaborations and report author says “I am so proud of the work these young people have done and their courage in putting themselves forwards to speak today. They have some important and sometimes troubling messages to get across. I hope that the people who attend really listen to what the young people have to say and act to make a difference.”
The full findings and video can be accessed on the 24th May on http://www.carpcollaborations.org/
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DRILL Grants Success QUB
DRILL Grants Success
The Disability Research Network at the School of Social Sciences, Education and Social Work (SSESW) is delighted to be involved in three grant award successes in Northern Ireland as part of the DRILL (Disability Research on Independent Living and Learning) programme, a £5 million scheme led by people with disabilities and funded by the Big Lottery Fund.
More than £1 million has been awarded to 10 new research and pilot projects across the UK, of which £450,000 has been allocated to three projects in Northern Ireland involving SSESW colleagues.
Each research or pilot project will be led by people with disabilities or long term health conditions. They will be developing approaches and questions, working alongside academics and policy makers.
The projects involving our colleagues are:
The Mental Health Foundation has been awarded £149,657 for their pilot project on supporting people with mental health problems to get involved in physical activity. They will work in partnership with the South Eastern Health and Social Care Trust, the Northern Health and Social Care Trust and SSESW colleagues Gavin Davidson and Paul Best.
The British Deaf Association has been awarded £149,947 and will explore access to justice for deaf people, working in collaboration with SSESW academic lead Bronagh Byrne and with Syracuse University College of Law and Rowan University (both USA).
Positive Futures has been awarded £149,997 for their project on supporting people with learning disabilities who have experienced violence. Positive Futures is working in collaboration with SSESW colleagues Berni Kelly and Rebecca Irvine and with the Public Prosecution Service, Police Service for Northern Ireland (PSNI) and Nexus NI.
Our Disability Research Network is a multi-disciplinary initiative aimed at enhancing collaboration between academics, policymakers, practitioners and community and voluntary sector organisations with an interest in disability studies and research. It provides unique opportunities for members to share knowledge and disseminate a growing body of disability research, stimulate debate about disability issues and develop collaborative partnerships for future disability research and further development of disability policy and practice.
For more information contact
Dr Bronagh Byrne at b.byrne@qub.ac.uk or see http://www.qub.ac.uk/drn
- Empowering people with mental health problems to undertake or increase physical activity
- Improving access to the justice system for people who are deaf
- Getting the right support: people with learning disabilities who are victims of sexual violence
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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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More than £1 million for 10 new research projects led by disabled people
Ten new projects across the UK have received between £40,000 and £150,000 of National Lottery funding each, to explore how disabled people can live as full citizens in our society and what changes and support will make that happen in practice.
Over £1.15 million worth of funding has been granted as part of the DRILL (Disability Research on Independent Living and Learning) programme, a £5 million scheme led by disabled people and funded by the Big Lottery Fund, the largest funder of community activity in the UK.
 Each research or pilot project will be led by disabled people or people with long term health conditions; they will be developing approaches and questions, working alongside academics and policy makers. Disabled people who often struggle to have their voices heard will be shaping research – such as people living with dementia, learning disabilities and mental health issues.
Grants were approved by the DRILL Central Research Committee, which is chaired by Professor Tom Shakespeare. He said:
“I welcome this next batch of timely, targeted, transformative projects funded by DRILL. From developing new social care models to improving access to the justice system for people who are deaf, these projects address some of the key barriers which affect disabled people’s ability to live independently across the UK.”
The 10 successful projects will be led by:
England
ALLFIE (The Alliance for Inclusive Education)
De Montford University
NDTI (National Development Team for Inclusion)
Cheshire Centre for Independent Living
University of Worcester
Northern Ireland
British Deaf Association (Northern Ireland)
Positive Futures
Scotland
Edinburgh Centre for Research on the Experience of Dementia
Wales
Barod
Launched in 2015, the DRILL programme is fully funded by National Lottery funding through the Big Lottery Fund and delivered by Disability Rights UK, Disability Action Northern Ireland, Inclusion Scotland and Disability Wales. DRILL is funding more than 30 research and pilot projects over a five-year period, all led by disabled people.
For further information on the projects visit www.drilluk.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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