- What interested you in doing research relating to disability?
I’m going to luxuriate in a long answer to this question! I’d like to say that it was for moral reasons, but it was largely to do with context. My brother, who is a total legend, has a learning difficulty, and I often volunteered at groups he attended when I was a teenager. Not because I wanted to cramp his style, but because even in the golden years before austerity, anything organised for disabled people (instead of by disabled people) was largely underfunded and understaffed. Volunteer time and donated money were what his clubs and activities ran on.
A year out of college I was job hunting and I applied to a large learning disability service provider. My CV basically said ‘has a learning disabled brother’ and, apparently, that is enough to get you a full time job where you are responsible for the health, safety, fulfilment and entertainment of another human being. Working for this organisation was a nightmare. They didn’t appear to care for their service users or their staff, while we cared deeply for the people in our care. Neighbours were cruel to my particular service user who didn’t use speech to communicate, and could be quite loud. The neighbours deliberately scared them with dogs, or blocked their path with bins. I was angry all the time, and resentful of the limitations placed on us in our ability to support our service user, and the unbearable parameters placed on their happiness and self-expression.
I ranted about this to a manager, who mentioned that she had been planning to go to university to study ‘Disability Studies’, but couldn’t go for personal reasons. I looked it up, decided that getting a loan from the government to move away from where I grew up wasn’t the worst idea ever, and that some of this Disability Studies stuff seemed pretty accurate. It didn’t take long after getting to uni to realise the problem wasn’t local, regional, or even national. The global mistreatment of disabled people should be of extraordinary shame to us, and it seemed that being involved in disability activism and academia was as good as way as any to try and address this in some small part. Three degrees and two post-docs into disability research later, I’m hoping to stick around and keep going with it for some time yet.
2) What are your main concerns for disability research / the DISC project?
My main concerns relate to the short term nature of funding and wider structural problems of ableism and disablement. Research funding, like the kind underpinning DISC, is fixed term and infrequently has meaningful sustainability strategies. At the conclusion of our funding I would be looking for reassurances from our funder, and other academic funders that they have plans, with practical steps and measurable goals, to ensure that academia becomes more inclusive irrespective of the pandemic.
Covid-19 of course, adds further concerns. Disabled people, and people managing long term health conditions are disproportionately affected by the pandemic. The economic penalty they endure will be unbearable – especially as it comes straight after a decade of austerity measures. The social impact is, and will continue to be horrific. Imagine being openly identified in both policy and in society as collateral damage. The health and mortality impacts, as we know, are also disastrous for those already managing underlying health conditions. My concern is that these out of date models of disability will be doubled down on as we learn to live and function with coronavirus, and that the gains made by projects such as DISC might be at risk.
3) What are your hopes for disability research / the DISC project?
Alternatively to my answer to the previous question, I still hope that the findings of this research translate into changes in academia. There are going to be colossal changes to the UK higher education sector (along with many other sectors) as a result of the pandemic. Income streams might change/plummet, teaching delivery will have to be altered, as will the practices of research. The workplace will be fundamentally changed, as those that can are likely to be encouraged to work from home indefinitely.
The opportunity is presenting itself to fundamentally change our assumptions of what is required in the academia (up until now based on ableist and arbitrary norms). We can address science based careers, and their accessibility. University policies will be (re)written as a result of the pandemic, and we can write accessibility into these new or altered documents. Jobs will change, and we can ensure that these jobs don’t undermine the inclusion of disabled colleagues, but instead promote their achievements and academic creativity.
Accessibility in the academy doesn’t address all the needs of all disabled people, however it does represent an important site to enact better practices, involved in the development of an extensive collection of careers. I’m hopeful that this research, and the continued research endeavours of the research team members individually, will continue to contribute to important changes in higher education, even if it is university by university.
4. How do you think the current pandemic will affect the DISC project?
I think it might result in more online material than originally anticipated, but otherwise, the project should continue largely as planned. Coronavirus is impacting on individual team members differently – some of us live on our own, some have caring responsibilities. We all have our own worries and concerns, we all have our own strengths and focuses. As long as we can manage these and support each other, we should be able to meet most of the project milestones that we hoped to.
5. If you could give one message to people about disability right now, what would it be?
Disabled people are not secondary, their needs are not secondary. When we make workplaces more accessible they improve for everyone, in ways that are sometimes difficult to imagine in the first instance. Trust disabled people to tell you what they need, and deliver it. Things will get better.