Learning Disability England launches in June, next month. It is a broad coalition of people and organisations, led by self advocates, who believe people with learning disabilities and their families need a loud and effective voice. This is why I think academics need to be involved.
Back in 2015, I answered a call Simon Duffy put out challenging academics to rally round the Learning Disability Alliance. I offered to help. It has taken a lot longer than I thought possible, but now we are ready to launch a network of academics to support LDE.
Of course, this is not new. A lot of academics have already been active supporting families and people with learning difficulties to fight for justice, particularly the Justice for Laughing Boy campaign (#justiceforLB). The Network is a way of getting more people involved, supporting a broader range of campaigns. Without doing too much advertising over 30 people have signed up to these principles:
|1. We will do everything we can to uphold the UN Convention on the Rights of People with Disabilities|
|2. We will argue for a fairer share of resources for disabled people|
|3. We will seek to promote teaching and research which is likely to be of value to people with learning disabilities and their families; and to share research in ways that are accessible|
|4. We will take every opportunity to listen to and understand the concerns of people with learning disabilities and families to find out how we as academics can best support them.|
Why am I excited about this development?
There are two reasons.
The first is a negative impulse. I have watched in despair as so much that we fought for since the 1980s vanishes. The list is long. The closure of institutions, financial provision for families and people with learning difficulties, a broad consensus that these are people who deserve support, self advocacy groups, individual budgets, all in danger. Whereas once, young people with learning difficulties could expect to have help in finding a home on reaching their twenties, now they are forced to stay with families – or, if ‘challenging’, in danger of being taken off into the uncaring care of ATUs and similar. Families are either unsupported or kept at a distance. And people are dying, because of (proven or suspected) negligence. Connor Sparrowhawk, Thomas Rawnsley, Nico Reed, and many others who die prematurely because they do not get top quality timely health care. What can I do to help? The Network is part of my answer.
Secondly, and this is a more upbeat message, I am excited about the possibilities of bringing academics into dialogue with self advocates and families. If I am known for anything, it is probably championing ‘inclusive research’, research where people with learning difficulties are equal partners, in deciding what questions to ask, and how, in working alongside researchers to do the work, and share it. The advent of LDE opens up the possibility of taking this further. If we, as academics, can work with self advocates and families, we stand a chance of identifying shared research priorities. In a way that has rarely been achieved since Mike Oliver called for ‘emancipatory’ research controlled by disabled people in 1992, I can see the potential of the agenda being set by self advocates, and families, with academics advising, helping to get the funding, and working in partnership to actually do the research. It is rather like Knowledge Exchange, which has brought academics and business together for mutual benefit. I dream of something similar working for social change.
What might we do?
Gather evidence about what is happening and share it on the LDE website.
Encourage students to make contact with self advocates and families, hear their concerns and perspectives
Support students to work in collaboration with self advocates on projects and dissertations.
Argue for a change in culture so that is seen as the way we do things to work in partnership with people who might benefit from research
Summarise research findings on topics that matter to people with learning difficulties and families in plain English, share via the website and LD ELF.
Share expertise in creating easy read information
Analyse data (a la Chris Hatton Blog) and share
Join specific campaigns as advisors
If you are a student, a researcher, a teacher in higher education and want to join us? Just get in touch with me via email – firstname.lastname@example.org