Just a couple of days ago, the FDA approved a new treatment for my disability, Spinal Muscular Atrophy (SMA). It is called Evrysdi (the chemical compound was called Risdiplam) and, unlike the previous major therapy, Spinraza, it comes in the form of a pill rather than a spinal injection. This means that people like me who have had spinal fusion surgery would not need to undergo a complicated procedure in order to receive treatment, and treatment could now be delivered at home as a normal part of one’s day. To say I was excited when I got the news would be an understatement. However, it really got me thinking about the way I feel about cures.
I remember when I was a lot younger, there was some kind of medication therapy being developed for a disability that is similar to mine. I don’t remember what it was exactly and I want to respect this person’s privacy but an acquaintance of mine was planning on getting this treatment and had very low expectations for it. Basically, they said that they would be happy to be able to push up their glasses again, an ability that they had lost years before. Their mom had mentioned to my mom that she was sad at their response, feeling that setting their expectations so low was akin to “giving up.” I don’t remember what I said to my mom but I think that conversation was an important turning point in my relationship to my disability. I could relate to wanting to gain more abilities, but I was also surprised at the fairly emotionally intense reaction that people who were not disabled themselves could have to a potential cure. It weakened the assurances I had always gotten that I was perfect just the way I was.
Members of other subsets and groups adjacent to the disability community (namely the Deaf and Autistic communities) have had very vocal opinions on the topic of cures. Often, the idea of “curing” a disability is met with hostility amongst those communities because in many ways, it is an attempt to erase an identity that people may have built their life around. Additionally, it reeks of a preference for the medical model of disability. As I discussed last week, the medical model of disability couches the validity of a disability in medical terminology, making doctors the gatekeepers of disabled identity. In this way, the emphasis on “curing” makes the “wrongness” of disability the focus. Thus, the “problem” is solved by getting rid of disability rather than getting rid of structural barriers that prevent people with certain medical conditions from fully enjoying various aspects of life.
Also importantly, putting that much pressure on a potential cure is not really fair to science or medicine. When it comes down to it, medicine is fallible. That’s why we don’t even really use the term cure anymore. We say something is a treatment. Cure has a lot of baggage associated with it and if something that purports to be a cure does not 100% fix the perceived medical problem 100% of the time, it’s not really a success.
Although I agree with everything I have said above, it is still a concept I really struggle with on a personal level.
There are certain aspects of my life that would be a lot better if I were not disabled. That is objectively true. Without SMA, I would not have as many medical concerns, I would not struggle as much with insurance issues, I would not need as many community-based supports, I would not be as tired in law school so my grades would probably be better, I would not have to deal with managing caregivers, and so many other things. Almost all of the things I mentioned are structural barriers that could be solved with better policy. That is true. But at the end of the day, does it really matter whose fault it is? No matter who is to blame, I have to foot the bill. I’m the one who has to struggle to manage everything that I do and it’s not like I fool myself into thinking that politicians are losing sleep over their disability policies. Not likely.
Back when Spinraza, the other treatment for SMA, was originally approved, I knew it would be a stressful and difficult process to gain access to it. I wasn’t wrong. I have a couple of friends who have received it and who are very happy with the amount of energy and abilities it has given them. I will even say I’m a little bit jealous to see the gains that my friends have gotten from it, knowing how much I struggle to get through the day-to-day physical and mental stresses associated with my needs. But I guess it wasn’t meant to be for me.
Initially, my doctor strongly advised against it and, feeling apprehensive about getting a lumbar puncture, I agreed. I switched doctors after I started law school (for unrelated reasons) and he was gung ho about advocating that I have an option to receive it. By that point, I was exhausted from school and had known quite a few people who had gotten the procedure safely and successfully, so I agreed. Then we found out that the spinal fusion I had when I was 6 years old was done too well, and the titanium had fused completely around my spinal cord, totally blocking access. My doctor was not deterred and said that we could look into surgery to place a port. Essentially, they would drill a hole in my spinal fusion and put in some kind of contraption to allow permanent access to my spinal cord (people who know about this better than me, I am sorry for butchering the explanation like I know I just did). That came with some substantial risks, not the least of which was the fact that I would need to be put completely under sedation, which is dangerous to do with my dramatically decreased lung capacity.
Although this was true, it was possible that the improvement I would get with Spinraza would outweigh whatever detriment the surgery would cause. But it was all a crapshoot. When my doctor called me to propose this idea, he left it in my hands. “I don’t want you to give me an answer soon,” he said. “I don’t want a prompt answer, I want the right answer for you.” And just like that, he left the decision to me. It was a lot of pressure and I got a lot of different advice from people who care about me. Ultimately, I decided to not have the surgery. The risks that it could potentially cause me far outweighed the benefits I might possibly get from treatment. But there was a big part of me that felt like I was disappointing people, especially because, deep down, I do sometimes feel like a burden to the people around me. I have a lot of needs and I know that meeting those needs often falls on other people. I know it can get tiring. But that doesn’t mean that I owe anyone my personal safety or my life, and those were the stakes I was playing with.
Now, with Evrysdi, I don’t know what will happen. I unreservedly hope I can get it and it works for me. That is absolutely true. But at the same time, I am already steeling myself for disappointing news. There are many steps here where things can go wrong, from medical complications to access issues, to my doctor not wanting me to take it for whatever reason, or to it just not working on my body. Even if it works at all on me, it may not help me gain many abilities. There may be bad side effects. There are a lot of unknowns right now and I am ready for whatever happens. But I would be glad if I could just gain the ability to feed myself again. Or push up my glasses.
One idea that has helped me to reconcile my disabled identity with any potential I could ever have to become non-disabled (which will probably never happen 100%) is the idea that I should use whatever privilege I have or will have to help people with disabilities. That means that if I am ever totally cured of SMA, I won’t run off to the beach or the woods or the mountains and start a new life. Being disabled has taught me a lot of things and helped me gain a lot of skills and insight that I want to use to help other people. And sometimes, on my worst days, I do wonder If I could make more of an impact if I was non-disabled, primarily because of the energy and stamina I would likely gain. I wonder what it would feel like to go through life without one hand tied behind my back, as I feel like I’m doing now. My life isn’t always rainbows and sunshine, and that is often due to my frustration with losing abilities or being dependent on other people. I don’t really know if that makes me an asshole and I don’t know if I will lose readers for talking about disability in this way. But it’s my truth.
I would love to hear yours in the comments below.