This is a guest post from somebody who doesn’t work at My Life My Choice, but who wanted to tell us about Disability Studies.
I work within a Disability Studies department in a university. Disability Studies is a subject which looks at what it means to be disabled from the point of view of disabled people. It aims to improve disabled people’s quality of life and promote their human rights.
The focus of my work is people with learning disabilities and talk. This means that I look closely at conversations that matter in order to try and understand what happens in them and why. The sorts of conversations that matter could be where a person with learning disabilities is telling their PA what they want support with, where a supervisor is planning work activities with their employee who has learning disabilities, or where a support worker is having a friendly chat with the individual with learning disabilities they support.
There are so many different sorts of conversations that matter and they take place in lots of different settings. I think it is important to take a close look at them because people with learning disabilities have told us so often that the way people talk with them has been hurtful or damaging.
I don’t have a learning disability, and being at a university may seem like the sort of thing that would take me further away from the everyday lives and experiences of people who do. There can be a risk that university life puts you in a bubble where you are immersed in books, theory and thinking, and distances you from understanding real people’s lives. However, Disability Studies is a subject which constantly pushes you to hear and respect disabled people’s voices, and to do research that really makes a difference.
Most people who work or study in this area are activists in some way or another. Some are part of disabled people’s user led organisations, some teach disability studies to inspire and challenge people, some do research that influences policies, and some do research to influence hearts and minds.
Disability studies is important to me as a disabled person because it allows me to be in contact with people who share my passion, who can understand something of my experience as a disabled person and who also want to make a difference with their research. It has helped me personally to view my disability as a political issue, rather than a personal failing.
I am a disabled person, but I don’t have a learning disability, so it’s important to me to try to make my research inclusive. Inclusive research is all the different ways that people with learning disabilities can be involved in research about their lives – as people who come up with research ideas, as researchers, as people who make sense of research other people have done, as people who tell others about research they’ve done, and any other creative and inclusive way.
Sometimes this can be a challenge. It was discussed recently at the Social History of Learning Disabilities conference, which is an inclusive academic conference run by the Open University, that many people with learning disabilities attend and present at. There were interesting discussions about how researchers can be criticised for not getting inclusive research ‘right’, or for not doing every part of a research project inclusively.
Someone asked ‘Are there times when it’s better to not do research inclusively if it doesn’t add to the outcome, which is to have a positive impact on the lives people with learning disabilities?’ I’m not sure there’s an easy answer, but I appreciate that difficult questions like this are thought about carefully in Disability Studies.
We should question and challenge ourselves to do better because inclusive research allows people with learning disabilities to have more control over how they are seen and thought about. We know that research done in the past about people with learning disabilities lives often focussed on medical or psychological issues and showed them as being a problem for other people to sort out. With inclusive research in Disability Studies, people with learning disabilities can challenge the idea that they are not clever enough to be researchers, to understand complicated ideas or to influence other people with their thoughts and ideas.
Research can seem like something that is hidden away, only understood by people in universities and which doesn’t really make much of a difference. Sometimes that can be true. However, things have been changed for people with learning disabilities because of research. The Valuing People white paper, which set out changes to the way services were delivered, was based on research about the lives of people with learning disabilities.
Death By Indifference and the Confidential Inquiry into Premature Deaths of People with Learning Disabilities showed that people with learning disabilities were dying unnecessarily because medical staff did not take their health needs seriously. Medical staff are now getting more training by people with learning disabilities because of this, and I know My Life My Choice are doing some brilliant work in this area.
I hope that my research can make things better for people with learning disabilities by showing what talk can look like between them and people who work with them or support them. Understanding conversations that matter like this can tell us how we might change them so people can get better outcomes as supporters, colleagues or professional workers.
This research isn’t so much about big policies, but it is about something that most of us do every day – talk. Talking to each other is something that we all have within our power to change and which can make a big difference to each individual we meet. Disability studies research can make changes, big or small that make a difference to people with learning disabilities lives and it is exciting to be part of it.
What words mean:
PA – personal assistant. This is someone that a disabled person would employ to support them to be independent in their lives, for example by helping them make a budget, pay bills, go to leisure activities and so on.
Supervisor – A boss at work.
Theory – a set of ideas which help us to understand something.
Activist – someone who works to change things that are important to them.
Political – to do with the rules and laws the government makes.
Academic – to do with university.
Inclusive – making sure people are included.
Influence – being able to change what people think.
Medical – to do with doctors, nurses or other health workers.
Psychological – to do with the mind, how we feel and act.
Indifference – Not interested or caring about something.
Confidential Inquiry – looking closely at health or health care in order to improve it.