Chronically Ill Kat

One of the biggest problems facing ME/CFS is the lack of research going into it. At the moment, there is no cure. And any possibility of a cure is far into the future. But it is still something that I want and dream about. However, in discussions about Disability Pride, it sometimes seems that, in wanting a cure for your illness, you are running directly in opposition to the idea of Disability Pride. However, I am not so sure that this is universally the case.

We don’t need a cure for disability

One of the big themes of Disability Pride is the idea that we don’t need a cure for disability. And for many disabilities this makes sense. In fact, the hunt for a cure, in some cases, has directly harmed people. An example of this is with autism. For many parents with autistic children there is an obsession with finding some sort of cure. This has led to a huge range of different, and often bogus claims for cures. Whilst many of these are harmless, some of them can permanently damage if not kill. What any attempt to find a cure for autism does is to invalidate the person and deny autism as a form of genetic divergence. Instead of understanding autism as a different way of thinking, looking for a cure suggests that this is a bad way of thinking. However, as the many, many stories online attest, given the right support, understanding and acceptance, autism does not have to be a disabling factor in someone’s life, even if someone has severe autism. The disabling factor is the obsession with making a neurodivergent person fit into a neurotypical society, either by not accepting someone’s autism, not understanding how neurodivergence works, or by spending time hunting for a cure. In a case such as autism, it is very understandable that Disability Pride requires an acceptance and understanding that autism really does not need a cure. There are many other disabilities where this is also the case. The idea is that searching for a cure means you believe the disability is bad, and do not accept it. If you want a cure, then you must be ashamed of being sick or different.  

I have also seen arguments from people with chronic illnesses who claim that, even if there was a cure for their illness, they would not take it. The whole idea of a cure assumes that there is an able-bodied normal that they would want to take their body back to, but for them, being disabled is the norm for their body, so a cure would in fact give them new abilities, and essentially change who they are as human. They argue that, by wanting or taking a cure, they undermine the years of work it took to accept their disability and become proud of being who they are. And who they are is irrevocably shaped by their disability. This argument suggests that, instead of focusing on a cure which undermines people’s acceptance of their disability, we should be fighting for a less prejudiced society, with more accessibility and accommodation for disabled people.   

As Emily Ladau says, “We should not be trying to cure disability or disease because society sees it as something to devalue. And for that matter, if the reasoning behind “curing” disability is about eradicating differences from society, then I think we should cure society’s ableism instead”.

Room for change

Whilst I fully agree that we should not be trying to cure disability in order to eradicate difference from society, I do think that there are many illness for which wanting a cure does not necessarily contradict the idea of Disability Pride. I suffer from ME/CFS and POTS syndrome and both of these significantly affect my life. In fact, even if we lived in a world set up completely for people with ME/CFS, I would still suffer a lot from my illnesses. I have intense pain and exhaustion, and some days I just have to lie in a dark room in silence. No amount of acceptance or ramp building will stop that; it is a problem with my body. And honestly, I am okay with that. Or at least I have fully accepted that I am disabled. I yell it from the roof tops, and I have a whole blog about being disabled. I am not ashamed of my illness, and I am proud of the challenges I have met, and the ways in which I have survived a world made for people a lot healthier than I am. But the idea of never having to suffer chronic pain and exhaustion again is very appealing. It would be lying to say that I don’t want a cure. When one comes along, I will be overjoyed to have my health back. I do not think that I lose my pride in what I am now – or what I was, if I were to be cured – just because I have an option to end my suffering.

I also believe that taking a cure for my illness does not undermine the long journey I have had to take to learn how to be disabled and proud. The thing is, cured or not, I will have been disabled at some point in my life – and learning to accept this will be a part of me forever more. Identity is never a static thing. We constantly pick up and add new aspects to our identities. Over the last six years, my identity has been hugely impacted by my disability; however, as I move forward in life, this will not always have to be the case. I fully believe that, should I ever find a cure, or recover from ME/CFS, the process of becoming an able-bodied person with a disabled past will be something of a challenge to explore in itself. And any exploration into my identity will be made against the backdrop of the lessons I have learnt through my discovery of Disability Pride. Change is not necessarily a bad thing.

For many, Disability Pride is about taking pride in our existence. It is about demanding that our needs are met and seeing ourselves as worthy enough to deserve for this to happen. It is about taking up space in a world made for non-disabled people and showing that, even if we spend our lives in bed, we are still worthwhile. And feeling Disability Pride means that we accept our illness and are not ashamed of ourselves because we are disabled. In which case, wanting a cure does not really contradict any of these things.

Acceptance of our disability

There is a very fine line between accepting our illness and wanting a cure, and wanting a cure so much that it does not allow us to accept our illness. For the first few years of my illness, I spent a considerable time researching different possible cures online. And let me tell you, there are so many organisations claiming to have a cure! Had I had the money, I could have spent thousands trying different methods to cure myself: from diets, obscure psychological processes, and even machines that I could put in my living room. And apparently, any one of these things would have cured me – each being a worthwhile investment for the bargain price of £2,000 or more! What this meant, in real terms, was that I spent a lot of time both blaming myself for still being ill with my “chronic” illness, and also living in a fake reality where, by not eating carbs, I would cure myself. This caused a lot of negative emotions, and also some very unrealistic life plans. I was unable to process that I could be sick forever, because I was too busy filling my head with the idea that if I was a good enough patient and tried enough methods I would find something to cure me of my incurable illness. And my family and friends, because they care a lot for me, searched alongside me, feeding into this belief. So together we kind of created a barrier to my acceptance of my illness.

The constant pressure to get well stopped me from building up a life and an identity based around my disability, and it was only when I finally gave up looking for a cure that I was able to come to terms with the long-term nature of my illness. Often, acceptance is misconstrued as meaning that the person wants to be and enjoys being sick. But for me, what it meant was that I was no longer at war with myself; and I no longer felt guilty that I wasn’t doing enough to get better. The hunt for a cure had absorbed me so much that I had lost sight of my reality. And this meant that I was unable to feel any form of Disability Pride. I felt that I wasn’t trying hard enough to get better, and that was the sole reason why I was still sick. There was so much shame around my illness that pride was unthinkable.

That being said, I went to see a new doctor last week – my first visit for over a year. And for once, it was a very positive experience; one which has rekindled my hope of some relief and understanding for at least some of my symptoms. So, I do think there is also such a thing as giving up on getting any relief from your symptoms. Whether this is through exhaustion and trauma as a result of the medical system, or from the idea that you cannot recover from your illness. I think I was guilty of doing both of those things, and the impact of this is that after six years I only received my first pain medication for migraines last week. There are still so many unexplored ways in which I can gain some relief from my illness. And this is the other side of the thin line. We have to walk the tightrope between accepting our illness and not being obsessed with the cure, whilst still experimenting with a variety of different ways to control or at least understand our illness. And I have to say, it’s a very wobbly tightrope to walk.

I think part of the Disability Pride discussion is that we should fight for more accessibility, and more symptom alleviation. Instead of looking for a cure, we should try and find ways to get relief from our negative symptoms. This is a better use of time, and also comes from a less ableist perspective than that of erasing disabled bodies. However, that certainly does not mean that, should there be a new wonder drug for ME/CFS, which works for me, my taking it is in any way about erasing disabled bodies. Such a brand new wonder drug, in the case of ME/CFS would alleviate the negative symptoms – for ME/CFS, that is all of them. But this is not the case for every disability.

We don’t hate our disabled bodies

At the end of the day, Disability Pride is about not hating or devaluing our disabled bodies. And this is something I strongly identify with. I absolutely do not hate my life – in fact I consider myself to be a very lucky person. I am surrounded by so much love and care that it would be impossible not feel this way. I sometimes feel sorry for myself because I am in so much pain and so tired all the time, but mostly, I am happy with my life. Would I love a cure to come along and let me finally do a cycling trip across the entirety of Japan? Absolutely. Does this mean I ashamed of my disabled self, or hate my disabled self? Absolutely not. In which case I think it is completely possible to be loud, proud and disabled and to want a cure for my ME/CFS.  

Links

• Article about the victim of the obsession with finding a cure for autism
• Article about the importance of the acceptance of autism
• A Ted Talk about neurodivergent pride.
• An article detailing why the author would not want a cure for their disability.