Bill Scott highlights some of the key strands coming out of the Inclusion Scotland webinar on DRILL funded projects in Scotland
The webinar centred around the experience and need for co-production in research, highlighting that disabled people should no longer be the subject of research, but equal partners in it.
The ‘Match Me’ project explored social housing lettings for disabled people, hearing their experiences as well as working with housing providers to find out about their practices. Their findings showed a shift towards the social model of disability, but things were often still too complex.
Peer researcher Chris Baird described his time working on the project as ‘informative, interesting and rewarding’.
‘The Barriers Faced by Autistic People’ project looked at ways to influence strategies, interventions and provision of services to autistic people.
Coproduction to them was a process; getting it right takes time and sufficient resources. Coproduction must stress quality over quantity.
The ‘Good Self-Directed Support’ project looked to shift the way in which support and social care for disabled people is delivered.
Their team discussed coproduction as a need to combine academic expertise with lived experience, emphasising that there should be ‘nothing about us without us.’ Peer researchers must be involved in the design of services, not just in the later stages when key decisions had already been made.
The ‘Inclusive Toilets’ project looked at the problems finding accessible toilets for disabled people when making journeys. Alongside their report, they also produced a play about their experiences.
Their idea of coproduction was based on inclusion, giving an example of a peer researcher who didn’t think they could take part because there was no childcare available, so an art table was created during workshops to entertain children.
‘Does it Matter?’ was a research project led by People First Scotland which looked at how people with learning disabilities can be supported to make decisions that are right for them. People First Scotland weren’t able to join the webinar, but the report they produced was really significant. Their research found that supporting people to make their own decisions made them more confident, but there was still a need for a big change in attitudes, especially from government and organisations that make decisions about funding people’s care.
We’re some way from where we want to be. But these projects have shown there are routes to co-production if the will is there. We now need to build on this work to ensure all projects which impact on disabled people have disabled people involved right from the start.
Bill Scott is the senior policy advisor and DRILL lead at Inclusion Scotland
Mutual Benefits – The Potential of Disabled People as Foster Carers
There is a huge shortage of foster carers in England. We sought to find out why Disabled people are not being asked to help fill this recruitment gap of 8,500 people.
The University of Worcester worked alongside Shaping Our Lives Service User and Disabled Persons’ Network and the Foster Care Co-operative agency to look in-depth at four fostering agencies in England. Training about disability awareness was provided by Becki Meakin from Shaping Our Lives. Participants felt it helped them change attitudes and practice in their workplace and made them more confident about working with Disabled people – looking at what they have to offer, rather than what they can’t do.
Many barriers were found, even though many Disabled people have their own children and have a wide range of life skills. These included discriminatory attitudes held by professionals; a lack of clarity about medical fitness; a lack of role models; and uncertainty around benefits eligibility. The central role of medical assessments in the application process was also found to present a significant impediment for Disabled people seeking to foster, often being based on a medical rather than a social model of disability.
We have found it very challenging to get many fostering agencies and Disabled people’s organisations interested in this project which we see as a ‘win-win’ opportunity. Disabled people will be able to step into employment, children needing care will have a greater choice of placement and the recruitment gap will be greatly reduced.
The research found that agencies are doing little to encourage Disabled people to apply to foster. Disabled people faced unnecessary barriers – such as inaccessible buildings, information systems and support structures – that could be easily addressed at little or no cost. Foster agency websites do not often mention Disabled foster parents and rarely have positive images of Disabled foster parents.
The research team made good progress across the four research sites, and interviewed twelve Disabled foster carers who are living proof that Disabled people can successfully foster. A majority of these had been previously rejected by fostering agencies solely because of their having declared a disability, and often no assessment was even made. Alison said: “… as a Disabled foster carer, I would have never expected to be matched with a child with complex needs. I expected to maybe have to wait a while for a placement and to only take easy placements maybe, but my agency haven’t been like that at all, which is again a credit to them”
If you’d like to hear more from Alison, you can listen to her interview on BBC Radio 4’s Woman’s Hour earlier this month.
Jon said:
“I have two children living with me since they were very young and they just see Disabled people as people. This is what inclusion brings – natural equality.”
It is hoped that dissemination of the project’s findings and highlighting success stories such as Alison’s and Jon’s will encourage both fostering agencies and Disabled people to embrace the great potential in Disabled people as foster carers.
The University of Worcester is seeking new funding to continue the project on a wider scale, planning further training for foster agencies and has written a practice guide about Disabled foster carers.
You can download a copy of the report here.
Dr Peter Unwin is principle lecturer of social work at the University of Worcester and lead author of ‘Mutual Benefits – The Potential of Disabled People as Foster Carers’.
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DRILL in Wales: The Impact so Far
Jody Mellor reflects on the learning for Wales, as the DRILL project begins to draw to a close, and introduces a series of webinars to share some key learning from the projects.
Historically, research on disability has rarely included people with lived experience. Disabled people have been excluded from participating in research about our own lives. Complex statistics and inaccessible research findings have precluded disabled people from understanding evidence and contributing to discussions about services or policies.
Disabled people have become suspicious of tokenistic inclusion, and when they have been invited to participate, their voices have often not been on a par with the views of professionals.
Wales has been lucky enough to receive DRILL funding for five research projects. These projects have explored a wide range of themes including:
- the experiences of peer researchers
- the career trajectories of disabled lawyers
- the friendships of young people with learning difficulties, and
- an exploration of self-employment opportunities for disabled people
These projects have all enabled disabled people to have a direct influence on decisions that impact our independent living, particularly in relation to policies and legislation.
In Wales, we have a much closer relationship to government than can be seen in other parts of the UK. This has allowed for disabled people’s increased involvement with the policies that directly impact us. Through DRILL, these five project teams have had the opportunity to present research evidence to several Members of Senedd at various events.
For a smaller nation like Wales, DRILL’s impact has not just been limited to policy change.
Wales has not benefitted from academic hubs such as a Centre for Disability Research, as other nations have. DRILL has played a crucial role in highlighting the wider relevance of coproduced social research to disabled people and DPOs (disabled people’s organisations) in our nation.
Thanks to DRILL funded activities in Wales, disabled people and DPOs have gained first-hand experience in leading research projects. They have become upskilled in research coproduction, methods of evaluation, commissioning research and systematic reviews of literature.
Disabled people have seen what works in terms of sharing evidence in an accessible way, and conducting ethical research. The DRILL Wales advisory group – led by disabled people and disability rights activists – has driven the programme and made decisions about which projects to fund. Our own organisation, Disability Wales, has led a research programme for the first time, developing DPO member expertise.
In 2019, we also secured funding for a PhD studentship and several funded internships for disabled students. Together, we are creating a repository of ‘good practice’ ethics and consent forms in accessible formats. We have archived anonymised data so this can be re-used by others in the future. Wales-based project teams have become part of research conversations by building networks with universities, third sector researchers and funding bodies.
Launched in 2015, DRILL is now drawing to a close after an astonishing five years. To mark its completion, Disability Wales is running a series of webinars to share key learning from the programme. The first of these was in June, and included a discussion with the Deputy Minister and Chief Whip, Jane Hutt. We hope you can join us at our next webinars, starting from September, to contribute to securing the legacy of this crucial programme for disabled people in Wales.
Jody Mellor
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Energy impairment and disability inclusion – report by the Chronic Illness Inclusion Project
Catherine Hale
If you ask someone living with a debilitating chronic illness if they consider themselves to be disabled, you often get a “yes but, no but” kind of reply.
If you dig deeper, you may find their ambivalence is not so much because they see disability in negative terms. It’s often because they don’t feel entitled to the status of a disabled person.
People with invisible chronic illness typically experience hostility when positioning themselves as disabled – claiming disability benefits or using accessible toilets, for example. Whether from friends, acquaintances or impersonal bureaucracies, the response ranges from subtle expressions of disbelief to overt accusation of faking or attention seeking.
As someone living with chronic illness it took me almost two
decades to shake off the pervasive sense of “feeling like a fraud” if I
identified as disabled. The research conducted among my peers with the
Chronic Illness Inclusion Project (CIIP) has opened my eyes to how widespread
this phenomenon is.
The CIIP is part of the DRILL programme, hosted by the Centre for Welfare Reform. Our aim was to reach out into the digital world of our own chronic illness communities, and bring those voices and experiences into spaces where they are not normally heard.
Our report Energy impairment and disability inclusion suggests that this hostility towards invisible chronic illness is linked to an apparent gap in the language of disability and impairment for describing our bodily experiences. Organisations of and for disabled people rarely refer to ‘chronic illness’ in the way we do. And government systems of disability assessment don’t have tick boxes for our recording our experience.
The CIIP combined in-depth focus group research with a survey gathering over 2,000 responses. Across a wide range of reported diagnoses and disease groups, respondents reported that pathological fatigue, or energy limitation, was the most restricting feature of their condition, closely followed by pain.
Yet, participants said, their experience of energy limitation was frequently dismissed with the notion that “everyone gets tired”. As one participant living with COPD put it:
My ‘real’ disability is one that very few people know about and which I’m sure would not entitle me to use the word ‘disabled’. I have extreme, life destroying, tiredness. It limits my life far more than my emphysema and yet that’s the thing that raises sympathy.
So what we are coming up against is a socially constructed idea of disability. According to norms and stereotypes, being disabled means looking different and displaying evidence of functional incapability. But if disability, in the public imagination, is about Otherness, being ‘tired’ just makes us like everyone else, only with less moral fibre.
The hostility described by participants went beyond failing to understand to actively denying and casting doubt on their testimony. We call this form of oppression disability denial and disbelief. The impact of disability denial and disbelief are far reaching. The invalidation of having bodily experience denied is traumatic on a personal level. On a social level it can destroy our closest relationships, leaving us bereft of support. On a practical level, disability denial bars our entitlement to support and impedes our right to equality and inclusion under the law.
Energy limiting conditions are very common. According to government data, “impairment of stamina, breathing or fatigue” is the second largest impairment group among disabled people in the UK.
But we are rarely seen as a group of disabled people. Medical classification systems carve us up into specialisms: – neurological, rheumatological, etc. They erase the lived experience we share of energy limitation.
Not having a term to describe our common form or impairment, people with energy limiting conditions often identify as ‘ill’ rather than ‘disabled.’ We don’t find our access needs as disabled people have been thought of, let alone met, by society.
We need a language that identifies us within the landscape of disability. Our survey respondents preferred the terms ‘energy limiting chronic illness’ and ‘energy impairment’ to existing language such as ‘fluctuating condition’ or ‘long term health condition’ for describing the impact of their health condition. ‘Fatigue’ is too easily heard as ‘feeling tired’, whereas energy impairment allows us to get across, not just an unpleasant sensation, but a restriction of function that can be total.
People with ELCI need an advocacy movement of our own, not separate from the existing Disabled People’s Movement in the UK, but as a constituent of it. As a movement, we need to be challenging disability denial and disbelief. If we take the social model of disability as our framework, we can say disability denial and disbelief are disabling. We suggest it should be seen as a form of ableism. Deaf and disabled people’s organisations must unite against ableism in all its forms.
As an advocacy movement we also need to ensure that the concept of energy impairment is included in all aspects of policy making around disability, and educating public bodies and private businesses about the adjustments and support we need in order to achieve equality and inclusion.
Some of these solutions for inclusion are to be found in digital technology. All three researchers and many of our participants are, to a greater or lesser degree, housebound due to energy impairment. But the CIIP flourished thanks to online focus group software; teamworking apps like Slack and video conferencing tools that brought us together in a virtual face to face meetings.
By harnessing the potential of these technologies, the CIIP engaged hundreds of people who said they had never been listened to before. It was also created the opportunity to do emancipatory disability research in a new way. The support we received from the Centre for Welfare Reform, and the uniquely enabling ethos of the DRILL programme meant that three researchers who were locked out of academia or mainstream employment were able to, not just have a job, but take the reins of the project.
The DRILL programme will come to an end, but the CIIP must continue and grow. This report lays the groundwork for our manifesto, to be released later this year. It will call for people with energy limiting chronic illness to be seen and to be believed.
Sign up to our mailing list to be part of the movement or to keep up to date with our activities.
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Why are disabled people seemingly unexpected in the legal profession and what can we do to create a culture of inclusion and access?
Debbie Foster and Natasha Hirst from the Legally Disabled project reflects on the findings of the project, and last month’s conference, about disabled people working in the legal profession
These are the questions that our Cardiff University based “Legally Disabled?” research team have set out to answer. Led by Prof Debbie Foster and working in coproduction with the Lawyers with Disabilities Division of The Law Society we held a series of focus groups around the UK with disabled legal professionals. This helped us to identify the key issues experienced by disabled people in trying to get into the profession and then progressing their careers once there. The key themes formed the basis of the questions asked in the 55 one to one interviews with legal professionals from a wide range of backgrounds, at different stages of their career. The third stage of data collection was in the form of online surveys, one for barristers and one for other legal professionals including solicitors and paralegals. 288 survey responses were received, helping us to quantify people’s experiences and paint a more robust picture of working life for disabled legal professionals.
Coproduction
Coproduction is at the core of the research, ensuring that disabled people from the legal profession have led and coproduced the design and delivery of research in equal partnership with the researchers. This is crucial to ensure that research is conducted with the social model of disability at its heart and seeks to produce evidence that will impact on the priorities identified by disabled people themselves.
The research is independent of any professional association, regulator or employer although we have engaged with the stakeholders throughout the project.
Disability and employment, the importance of aspiration
Disabled people working in other professions may well experience similar barriers to career entry and progression as those in the legal field. We believe that the findings of this research are transferable to other occupations. Much policy attention is focussed 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. Policy aspirations such as reducing the disability pay gap and employment gap, cannot be realised unless disabled people are able to progress into senior roles and to retain leadership roles if they acquire an impairment during their career.
We believe that disabled people seeking employment or working in the legal profession are an untapped resource with strong ambition, tenacity, determination and excellent problem-solving skills – all qualities that bring great benefits to employers.
However, our 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. Much work needs to be done to improve the fairness of recruitment processes and to open up work experience opportunities which are significant in securing training and job offers.
Disclosure and seeking reasonable adjustments
- A large proportion of research participants reported instances of discrimination and ill-treatment associated with their impairment. Coupled with a poor understanding of reasonable adjustments and how impairments and health conditions can vary, 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 opportunities for disabled people and career progression. Support from managers, HR and colleagues is highly variable and good policies do not necessarily translate into good practice.
The good practice
- Strong role models, supportive senior colleagues and the presence of mentors and networks are important factors for enabling career progression. Targeted recruitment initiatives were important for levelling the playing field and provide opportunities for disabled people. Open conversations, a willingness to find solutions and trusting disabled people to know what works for them is crucial for supporting people to reach their potential
Our data suggests that organisations already employ a significant number of disabled people who have chosen to conceal their identity for fear that this will have negative repercussions on their career. This suggests that talented and already productive disabled employees are more than likely under-performing and under-achieving and the profession is failing to properly utilise their skills.
Conference
Our conference was a platform for the voice of disabled legal professionals and we were delighted to welcome a diverse audience of around 100 people to the launch of our research findings.
The line up of panellists and speakers consisted of disabled people from across the legal profession, at different stages of their careers, providing fascinating insights into their experiences and thoughts on the research recommendations.
Three workshops supported discussion on how the profession can start to implement the recommendations of the research. ‘Getting In’ looked at the role of recruitment, ‘Getting On and Up’ focussed on the importance of progression and disabled people in leadership roles and ‘All Bar None’ focussed on the challenges for those at or aspiring to the Bar.
Our executive summary and full reports can be downloaded here.
What’s next ?
Over the next few months we will be visiting stakeholders and networks to share and discuss our research findings and recommendations. The aim is to support the profession to create strategies for change to improve access and inclusion for disabled legal professionals. Anyone who would like us to visit can get in touch.
There will be a small event in Cardiff during the Spring, details to be confirmed.
You can find out more on www.legallydisabled.com and sign up to our mailing list, follow us on Twitter @LegallyDisabled or contact the researchers on [email protected]
Legally Disabled Conference, British Academy, London. 24th January 2020. Photos ©Natasha Hirst Photography
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Blog: Looking at the effectiveness of Accessibility Plans in secondary schools
DRILL has published the research carried out by the Alliance for Inclusive Education (Allfie) into the effectiveness of Accessibility Plans in secondary schools. Dr Armineh Soorenian, who carried out the research, tells us about what she found and some of the stories she heard.
I travelled across England and conducted 12 focus groups consisting of Disabled young people, parents of Disabled young people, and education professionals. Participants shared their experiences relating to the impact of Accessibility Plans on a range of school practices. Interviews were held with a small number of parents. Alongside the field study, I ran two sets of online surveys, accessing almost 350 parents and professionals. Finally, I collected quantitative data to support the findings, which involved sending out freedom of information requests to OFSTED/local authorities and gathering official statistics.
What are Accessibility Plans?
Accessibility Plans are legal documents that set out how, over time, a school plans to increase access to the curriculum and the physical environment for Disabled pupils, and to make written information more readily available in a range of different formats.
Our findings
In our online survey, almost 80% of parents were not aware of the existence of their schools’ Accessibility Plans. Field study participants told us that they were not given information regarding the documents, and were hardly ever involved in their production, development or review. They saw them as ‘worthless pieces of paper’ if schools lacked the drive to adhere to their basic principles and foster a culture of equality and inclusion.
A major outcome of this project has been to highlight the negative, sometimes devastating, impact that ineffective school Accessibility Plans can have on Disabled children and their families. The shocking discrimination and segregation experienced by our young participants is firm evidence that the UK is persistently in breach of Article 24 of the United Nations Convention on the Rights of Persons with Disabilities.
The young participants reported that they were denied full participation in their school communities. Regular barriers included inadequate transport, lack of trained staff, access issues, and prejudicial attitudes. The Disabled young people felt isolated and shut out.
Adam explained how transport issues had restricted his son’s social inclusion: ‘My son is taken in a taxi and the timing can’t be varied, so he can’t join in any after-school clubs. Also, we don’t meet the other parents or families, so that excludes us to a certain degree. Normally you’d stand outside the school gate […], but we’ve not had that experience. We mentioned it to one of the schools and they set up a parent liaison club during the day, but because of work or other commitments it’s not really practical.’
In the focus groups, parents were critical about the lack of trained staff available for social activities and events. One parent was told, for example, that the matter of their child going to the toilet, for which they needed support, became a ‘care’ issue after 3:30pm rather than an ‘extra education’ one. Parents were generally concerned about the impact that similar experiences were having on their children’s emotional and social health.
‘Access’ is often perceived by schools and education authorities as relating almost entirely to pupils with physical impairments, rendering those with learning and sensory impairments invisible and putting them at an unfair disadvantage. One parent explained how their child’s sensory issues were totally overlooked: ‘Too much distraction. Walls and some windows are covered with text, photos, pictures, drawings, info. Desks are filled with stationery pots. The acoustics in the dining area are bad, making it extremely noisy at lunch and break times.’
Staff attitudes played a significant role in the levels of inclusion experienced. Our young participants and parents felt that if a teacher liked or disliked them, it made all the difference: ‘The head was new to start when [my son] was there and she took an instant dislike to him because she just saw him as naughty. She didn’t think that he had any special needs or anything. So, we stumbled across a lot of hurdles until she got put into the position where there was no SENCO at school, there was no deputy head, and she had to take the responsibility. Then she realised that there might possibly be something different about my child and not necessarily just naughty. But in spite of that, she still didn’t want him in the school, so she was working at getting him out. I think by the time it came to his exclusion, his permanent exclusion, I figured that if that was her attitude and her approach to him being at the school, it’s not in his best interests to be there…’
Separating Disabled learners from their non-disabled peer group is discriminatory. It limits life opportunities and produces an unjust society. Young people’s experiences of exclusion and isolation are likely to have a lasting and damaging effect on their mental health and self-esteem. One mother talked about her daughter: ‘She still, now, gets very angry and frustrated when she feels she’s not being taken just like the other children […] What I find is that teachers want to resolve an issue and they don’t listen to my daughter first. There is a lack of comprehension for the need to validate what my daughter is experiencing …’
The key to reversing the effects of segregation is a fully inclusive system. As one parent expressed: ‘I think we’ve had a generation where they’ve forgotten the “not seen.” They know they’re there, but they just don’t know what to do with them. It’s [about] bringing them back out into the forefront of how brilliant these kids can be and what they can achieve and what they can do.’
Read about the project and view the full research report
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Blog: DRILL welcomes Sue Bott as new programme manager
Sue Bott, DRILL Programme Manager
It’s a fascinating time to be joining DRILL as the new programme manager.
The ambition was to develop and implement a project which would make a real and practical difference to disabled people’s lives, both now and in the future.
The programme has produced a broad range of reports and toolkits which will benefit disabled people. These will provide resources for commissioners and policy makers to draw on when it comes to developing new policies, systems and services which help people get, maintain and increase independence.
We’ve aimed to cut across a huge range of impairment groups, geographical areas and ethnic backgrounds – an aim which I think has been well met.
At its heart has been the over-riding principle of involving disabled people in the design and implementation of the projects, all of which were part of an approval process led by disabled people from a range of fields, including academia and disabled people’s organisations.
Looking ahead there are more riches to come. Two of our projects are delivering ground breaking research results next week.
On January 23rd, The Alliance for Inclusive Education (ALLFIE) is publishing its findings of surveys and interviews with over 400 parents, children and education professionals to explore how well – or badly – schools are doing with accessibility plans.
Accessibility plans are a statutory requirement for all schools. They are supposed to set out how individual schools are addressing the current and future needs of disabled pupils and students when it comes to the physical environment, information provision and teaching and learning practices.
On January 24th, the ‘Legally Disabled’ project will report on its findings about disability discrimination in the legal profession. In an industry with such a central place in today’s society, and of course with the benefit of knowing about the law, we felt it was important to know how well disabled people get on in the world of legal eagles.
The team from Cardiff University, led by disabled researchers, spoke to people at all levels of the profession, from trainee lawyers to barristers and judges. How easy is it to break into the profession if you’re disabled? What kind of response do you get if you ask for reasonable adjustments to make it easier to do your job? And what are the experiences of senior figures in the profession?
All will be revealed at a conference to discuss the findings on the 24th. The conference is now full, but we will of course be publishing the findings on the DRILL website at the end of next week.
The same is true of the ALLFIE research, which will also be available through the DRILL website on the 23rd January.
If you’d like to know more about the projects which we’ve been funding, do go to our projects page for a full list.
Previously Head of Research at Disability Rights UK, Sue Bott is the new Programme Manager at DRILL
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Blog: Disabled researchers are a challenge to Higher Eduction sector
In academic studies involving disabled people, all researchers are equal but some – it seems – are more equal than others.
Disabled peer researchers involved in projects have reported that their lived experience is not fully appreciated and that they sometimes felt like an inferior bolt-on – even though the projects were funded by a user-led programme.
Those feelings emerged from a study funded and written as part of the DRILL programme.
Disability Wales, members of Wales School for Social Care Research, HOLI Coproduction Research in Wales and the Wales DRILL National Advisory Group conducted interviews and focus groups with both peer researchers and academic researchers involved in six of the 35 projects DRILL has funded.
It uncovered frustration amongst disabled people around university culture and systems, alongside an unspoken assumption that academic researchers – rather than those with ‘lived experience – are the real experts.
That frustration was exacerbated because participants in the study and its authors emphasised the value of peer researchers. We found that benefits ranged from recruitment of study participants to providing reassurance for disabled interviewees and wider and more effective dissemination of the research findings.
Our conclusions reinforce previously published literature which suggests that shared experiences and language between peer researchers and participants can encourage participants to give more detailed responses.
As one peer researcher said:
“I have had people say to me at the end of an interview, ‘I’ve told you things I’ve never told anyone before.”
Yet our research makes clear that there are both practical and theoretical or linguistic barriers to a sense of genuine coproduction.
The former can include the very start of the process – with university research ethics committees nervous at the implications of involving disabled people. Meanwhile, academics agitated over the extra time allocated to providing research skills training to some peer researchers and related independent living skills; and on-going support required them during the research process.
It is reassuring that ethics committees and academics are considering the potential impact on disabled peer researchers of talking about sensitive or traumatic issues that may be factors in their own lives. However, there are ways of managing that risk – such as writing reflective diaries which were used by some of the projects interviewed
Some academics also perceived that involvement of peer researchers presented additional reputational risk to both the academic research teams and their university’s reputation.
This is tied to the need for academics to change their attitudes if a study is to be a genuine coproduction. Our report concludes:
“In order to practice research coproduction effectively, academics need to relinquish some of their power and universities need to create a working environment where decisions are made jointly and new perspectives are welcomed. In this new culture, academics and other lead organisations need to be encouraged to take risks, experiment with new ways of working and be open to learning when things go wrong.”
Despite the growing number of projects that badge themselves as coproduced, that new culture has not been embedded. The delays in ethics committee approval can be a factor in the lack of peer researcher involvement in shaping the aims and approaches of research. Their exclusion from meetings at the very beginning of the process undermines the prospect of genuine coproduction.
Some of the peer researchers we spoke to felt their contribution was under-valued by universities, potentially rendering their involvement tokenistic.
These attitudes and feelings – amongst both groups – could have their roots in language.
Some disabled people felt that the term peer researcher reinforces traditional hierarchies – with the disabled people seen as inferior to the academic researchers exploring the same issues.
One project got round this challenge by the straightforward approach of using the term co-researchers.
Overall we found much room for improvement in attempts to deliver coproduced research involving the very people whose lives are under the microscope. However, there is no doubt that such approaches both improve the quality of conclusions and benefit peer researchers.
For some peer researchers the experience improved their employability and provided additional insight or knowledge of their own health condition or impairment.
Almost inevitably, however, the quirks and – as some would say – the petty cruelties of the benefits system mean that some disabled people refused payment out of concern about accessing benefits once the project ended. For some, this anxiety was so great they requested anonymity for fear that their volunteering would lead benefit assessors to conclude they could hold down full-time jobs.
We talked above about parity of esteem between academic and peer researchers. If one group is to be unpaid such parity will never truly be achieved.
The user-led approach adopted by DRILL has helped take disability research to new levels of insight and understanding. Disabled people involved in planning and delivering those individual projects must be recognised as true equals and the problems we have identified addressed.
There can be no room for two-tier equality in disability research.
You can view the research findings here.
28th November 2019
Ruth Nortey is a researcher based at Disability Wales and a PhD student at Cardiff University. Ruth’s PhD research explores good practice around the employment of disabled people in Wales.
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Blog: Supporting people with learning disabilities to have positive sexual relationships
By Anna Marriott, Research and Evaluation programme Lead at NDTi
People with learning disabilities want to love and be loved.
This is simply stating the obvious, and we shouldn’t need research to tell us this. However, the National Development Team for Inclusion (NDTi) has been working in partnership with My Life My Choice to explore exactly this topic. We have been researching this because self-advocates at My Life My Choice told us lack of support for sexual relationships for people with learning disabilities is an important issue that needs addressing. This research was funded by the Disability Research on Independent Living and Learning programme, which is funded by the National Lottery Community Fund. This has been a co-produced piece of research, meaning that the original research idea and grant application was planned with people with learning disabilities and self-advocates who worked in partnership with NDTi researchers in terms of designing the study, collecting and analysing the data.
Good quality relationships with partners and friends are important for our health, wellbeing and happiness. They can help protect us physically and emotionally and can bring meaning to our lives. This applies to people with learning disabilities as much as anyone else.
People with learning disabilities have the right to relationships. There isn’t a debate about that. They have the right to respect for private and family life (article 8, Human Rights Act 1998) and participation in the life of the community, as guaranteed by the UN Disability Rights Convention 2006. More recent legislation such as the Care Act 2014 is explicit that local authorities have a duty to promote wellbeing when making decisions about someone or planning services. Personal relationships are one of the nine areas considered as important elements of wellbeing.
So, we don’t need new laws to give people with learning disabilities the right to have a sexual relationship. They already have this right in principle. But there seem to be challenges when it comes to putting rights into practice. When speaking with people for our research, we were repeatedly given examples of ways in which they are treated that ignore their rights. Charlene told us ‘I’ve got a boyfriend, but the staff won’t let me give him a cuddle or a kiss’. Charlene has capacity to take that decision for herself and no-one has the right to tell her otherwise. But they do.
Consent to sexual relationships is an ‘exempted’ decision under the Mental Capacity Act 2005. There are no ‘best interest decisions’ around sexual relationships. So, if someone does not have capacity to consent to a sexual relationship’ then no-one can take this decision on their behalf. This doesn’t seem a radical statement – who would argue that someone should be forced into a sexual relationship/marriage if they don’t have capacity to choose this? However, somehow it appears to be acceptable that someone with capacity, who is choosing to have a sexual relationship, is denied the right.
Why do we have an issue with people with learning disabilities having sexual needs and desires? In the media we are bombarded with messages about love, sex and happy families. When scrolling through the news, adverts pop up telling you how ‘you too can meet someone special’ and increasingly love is recognised in different ways. Yet still people with disabilities are almost invisible in these images of love and sexuality. Why is it so different for them? Do we as people who support them still see this as a lower priority? Why is it more important that someone gets training to teach them how to use a bus than having someone to hold hands with on their bus journey? If we think the need for love is part of being human, what does this say about how we see people with learning disabilities?
We concluded in our research that people with learning disabilities need to understand their right to have relationships, but they also need the skills and confidence to be able to challenge situations where they rights are being denied. Commissioners have a role to play in ensuring services are respecting and protecting people’s rights. Providers should recognise their legal duties under the Human Rights Act 1998, which includes respecting and facilitating people’s decisions. In regard to rights around sexual relationships, services need to have clear, explicit organisational policies and to provide appropriate training for frontline social care staff.
We hope that the Research in Practice for Adults Webinar will help staff to understand why people with learning disabilities may need specific support around sexual relationships and give ideas on the best way to support people to enable them to fulfil their wishes to have relationships.
About the author
Anna Marriott is Research and Evaluation programme Lead at NDTi. Her primary area of research and recent work has been around health inequalities for people with learning disabilities. This has included a focus on the wider social determinants of health, such as social networks and housing, as well as work around access to healthcare for people.
Thank you to Research in Practice for Adults for allowing us to share this article.
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News: “Is it Me?: How do attitudes within the social care system impact up on independent living choices.”
Darlene Corry from Disability Action NI is talking about her research “Is it Me?: How do attitudes within the social care system impact up on independent living choices.” She is joined by one of the research partners, Paul Rooney from the Northern Ireland Social Care Council.
This important piece of research tackles two major issues head on – attitudes, which significantly impact on disabled people’s daily lives; and adult social care, which exists to support people to live as independently as possible. What happens in practice is what this research is gathering.
This research will explore what attitudes and behaviours disabled people are experiencing from social care staff as well as from the policies and practices in place within the social care system, as well as what impacts these attitudes have, positive or negative, on disabled peoples’ lived experiences of independent living. The voices of social care workers and social workers will also give context to the challenges and supports they face in their work. Is it Me? will provide key findings about what is working well and should be supported, and what is not working well and needs to be addressed, alongside evidence based recommendations for change.
The hope is for this research to become a useful tool for disabled people, their allies and organisations, social care workers and managers, policy and decision makers and others to improve attitudes within the social care system; and to improve how disabled people rights’ for choice and control over their independent living can be more effectively met.
The research data has now been gathered – this includes:
- 4 focus groups with disabled people, and 1 focus group with social care managers
- 15 interviews with disabled people
- 552 responses to an online survey by social care workers and social workers
This research is being analysed and written up now. The co-production research partnership, led by disabled people, has been working closely with the researcher from the outset of this project to co-produce this report. We are looking to get the report out for the end of October / beginning of November.
This research project is is one of 32 UK wide pieces of research co-produced by disabled people is funded by DRILL – the biggest programme in the world of research led by disabled people. It is supported by a co-production research partnership, made up of disability rights activists and academics who have been working closely with the researcher from the outset of this project to co-produce this report. The other partner for this piece of research is the DRILL National Advisory Group, supporting the five pieces of DRILL research coming out of Northern Ireland.
Here is this tv interview link: about DRILL research in progress
To get in touch with the researcher, please contact:
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