“Prevention is Better Than Cure.”

Well, you’re not wrong…

It’s a favourite saying of many people. My mother would use it when I complained about being late in the mornings, “Should have gotten ready the night before. Prevention is better than cure!”. The idea is, it’s better for something not to happen than to have to fix it afterwards. My lovely UK framed perspective of disability is largely focussed with rights, getting the support I need to access life and all of the rest of it. It never really applied to me because I was born with my condition. Spontaneous mutation of my genes. Nothing to be done, so why consider prevention? My focus ethically is with the concept of cure, and fighting for the right to life of disabled people and to be valued as people before we succumb to this normative hegemonic society. As a disabled person, it’s hard to recognise privilege when so many other people have more than us, but I do have it. I am in a fortunate position to be able to fight for things like benefits because I live in a state with enough stability to provide it.

If I moved on to look at a global perspective of disability, I have to bite back my pride and realise that a rights based model (as is rampant in the global north) isn’t the best way forward. It’s exclusionary. It focuses on the needs of disabled people like me. Our disability movement is so about getting non-disabled people to focus on our needs but at the same time we exclude others? It’s like white feminism, except contemporary global north disability studies is so focussed on itself we don’t even have the critical infrastructure in place to come up with an equivalent term. I spent some time today reading Decolonising Disability: thinking and acting globally by Helen Meekosha and her work drives home that as a movement disability studies, battling exclusion, is very exclusive.

“Disability studies was constructed as a field of knowledge without reference to the theorists, or the social experience, of the global South… Contemporary disability studies constitutes a form of scholarly colonialism and needs to be re-thought taking full account of the 400 million disabled people living in the global South.”

I blog because I felt that people didn’t pay enough attention to my experiences, my thoughts, my opinions because I demand that I matter. To consider that I have access to many economic and infrastructural systems that allow me to do this. I’m sat in my house, on my laptop, using the internet to make people listen. This is the same kind of privilege that led to disability studies being focussed on the global north, without making the effort to incorporate other experiences. Lived experience is important, but are we focusing on the rights ones? We need to be challenged by the experiences of others, and do the extra work to include the experiences that contradict our priorities. There’s lots of research to suggest that the production of disability in the global south is a huge issue. People being impaired through wars, violence, pollution. Not to say that it doesn’t happen in the global north, but comparatively which experiences are more important? To say that because something happens here too (for example, accident at work, the lower life expectancies of people in manual work) doesn’t mean we should discount the experiences of others and go back to our nice theoretical framework that lets us keep fighting for rights and rights alone. It’s the equivalent of showing up at a Black Lives Matter rally holding your ‘All Lives Matter’ placard. It derails the argument from the central point and allows people to challenge something they disagree with without actually doing any work or anything productive. When was the last time you saw an all lives matter campaigner out working with refugees, or fixing the care system? You don’t. One person might be, but as a whole, the movement isn’t interested. In disability studies, the movement isn’t collectively interested in the production of disability and fleshing it out properly because then you have to start working on some difficult conflicts. How can the disability studies ‘We’re just fine as we are, thank you, no cures needed here’ approach mesh with the ‘Yeah, actually, we’d rather not become impaired and then disabled in the first place’ stance?

Think about it. A poisoned water source is causing visual impairment within the local town. Does the disability activist campaign to clean the water source or for the rights of those who are now visually impaired? What does the inclusive approach look like? Common sense says, fix the water and support those with impairment. But that’s an easy one. What about when it gets more complicated. Does the disability rights activist start tackling things like chemical warfare? Helen Meekosha hopes these kind of conversations will lead to discussions about the potential role of disability studies and disability activists in the prevention of global atrocities. In the same way that Christianity has huge trouble reconciling disability with fundamentals like being made in God’s image and healing, disability studies has trouble reconciling that actually — some people shouldn’t be impaired, or some people actually want a cure.

Just the other day, I went to visit my parents. I was in the area, I had to drop off a dress for my sister and also, didn’t fancy the long drive back to my house. Rather than the kind of light comedy entertainment I like to watch (or have on in the background to ignore as I write blogs like this), they had on a documentary about the Holocaust. 
“Would you go and visit Auschwitz?” they asked me. No, I self-righteously claimed, as I scrambled ever higher up my horse. I’d be too worried about it just becoming misery porn, I’d need a reason to go so it wasn’t just a tourist trip and I couldn’t see my work ever giving me a reason to go there. I’m not like all those other people who go to see death. I’m somehow different or special or have moral reasons X Y and Z which allow me to take this stance relatively guilt free. I need a reason to go, and not just education for educations sake! No, not me. It must be work related. Oh, but disability studies work and atrocities like the holocaust? Where was the overlap? The closest link I’d found so far was Godwin’s law, avoid talking about Hitler and the Nazis to prevent ending any discussion or debate around disability studies being prematurely ended. But, what if? What if we do change the information flow and the southern theories of disability enable a paradigm shift, and we do start thinking about it — and we do start having to actually engage with this idea? How do we feel about prevention of disability? What if we acknowledge that it is a privilege to be able to ignore this big issue in our work, activism and research and build a different framework? Collectively, we could either do, or enable a lot of work to be done. Sitting here in the global north, it might not be my place to do it. In the same way that I expect my workplace to make reasonable adjustments for me, I think the global north can make the adjustment of providing room in the academic debate for the southern disability approach.

n.b. There is lots of work being done to acknowledge the divide in disability studies between the global north and south, e.g. Journal of Disability & the Global South.