What About People Who Want a Cure?

When discussing the Social Model of Disability, one of the questions that comes up is: what about those people who actually do want a cure, or would benefit from one. What about the people with chronic pain, with terminal illnesses, or with degenerative conditions that do interfere with a person’s ability to function, regardless of accommodations? This very question occasionally leads to clashes within the disability community. Some believe that people with chronic illnesses should not be included under the definition of Disabled People. Still others use the existence of such people to push the Medical Model rather than the Social one.

I’ve seen the argument before that chronically ill people are not disabled in the same way as people with more traditionally defined disabilities like paralysis, hearing loss, vision loss, lack of mobility, and so forth and so forth, because they don’t perform disability the same way as others. The article I read, went on to describe examples of how their white cane, their dark glasses, their inability to navigate unfamiliar environments, even their service dog, all added to the disability performance. With a chronically ill person however, they argued, there is no performance. The ill person can maintain privacy or invisibility, thus not being treated the same way that “real” disabled people are. That chronically ill people are not disabled or even impaired, but rather sick.

I can understand to a point where they are coming from. It is hard to tell a person suffering from chronic pain, and I use the word suffering here intentionally, that they shouldn’t hope for a cure. Chronic illness is a bad thing, it’s not like being Deaf where it is a difference of perception – it is something actually wrong. It can be difficult to convince people that disability is not inherently miserable when they are experiencing constant pain.

While I can understand why people think the way they do, I think that it Is a failing not of the social model but rather of people’s understanding of the model as well as a misunderstanding of what impairment, disability, and chronic illness are.

Discussing the performance issue, where performance of disability here should be taken to mean actions or lack of actions that are the result of an existing impairment and disability and which identify you as a disabled person to the rest of society. Like many examples of situations where people want to exclude a marginalized group within a marginalized community, it is subscribing to the problematic concept of passing privilege – the idea that if people don’t know you are a member of a marginalized community, they won’t treat you like one. The obvious problem with this idea, of course, is that a person doesn’t have to be out to still experience the psychological consequences of witnessing bigotry aimed at an identity they identify with. A trans woman doesn’t have male privilege, a bi person doesn’t have straight privilege, and a chronically ill person does not have abled privilege. An additional problem however, is that chronic illness involves its own performances of disability. Even if passing privilege were a thing, chronically ill people do not pass.

Performance of disability still exists in chronic illness. When I have an accident in public because I cannot find an accessible washroom in time – that is an example of performing my disability. When I keep interrupting a conversation, or have to leave a movie over and over, or keep pausing a game being played with friends, all so I can go to the bathroom, that is an example of performing my disability. When I throw up in public garbage cans or on the street that is an example of performing my disability. When I cannot leave the house because I am in too much pain that is performing my disability.

There are ways which I am disabled by society, even if my own conditions do offer their own disabling influence. For all that I have chronic pain, for example, it is less the pain that is a barrier in many cases, but my inability to DO anything about the pain that is. Being restricted from accessing my medication in public limits my ability to integrate into society.  Being restricted from regular and safe access to my medication limits my ability to integrate into society. Both of these stem from ableist ideas regarding the validity of pain and pain treatment. The limits on access to medication is an example of social disability in a medical setting – my function is impaired by external forces, namely problematic attitudes pertaining to pain treatment, as much if not more so than by the pain itself.

Similarly, a lot of what separates me from society, is its unwillingness to work with my abilities as opposed to punishing me for my disabilities. When I was in university, for example, I was frequently too sick to come to class. A part of this had to do with the fact that I took the bus to and from school. The bus route did not have consistent access to restrooms. As a result, if I was having the kind of day where I’m running to the bathroom frequently, a bus trip put me in the situation of risking having a public accident. Taking the bus is also exhausting. It takes longer, is inconsistent with whether or not I will be able to sit down, involves me having to walk to the stop, and so it uses up more spoons. Some days I had to stay home, not because I didn’t have the energy for class itself but because I didn’t have the energy for the additional tasks that physically going to class would entail.

Under the medical model, there is not much I can do except maybe take so many pain meds that anything I try to learn that day will likely be gone forever before I’m even done processing the prof’s sentence.

Under the social model, however, there would be additional options – the professor could work with me to let me watch the lecture from home via skype, or pre-recorded videos. The professor could assign assignments that would make it possible for me to learn and show the work, without having to be physically there. Perhaps the university could help arrange some sort of ride share or carpooling program so that I can spend less of my energy going to class.

Similarly, a lot of my social isolation comes from not being able to reasonably count on accessibility in most situations – not being able to count on a wheelchair or other mobility device being available, not being able to count on a bathroom being available, having to use stairs to get to where the event is taking place, all of the same things that provide barriers to other disabled people, are barriers for me as well despite that fact that many of my disabilities do stem from something that can be said to be inherently bad.

The Social Model of Disability doesn’t completely disregard the existence and use of medicine. Taking anti-depressants for depression doesn’t invalidate the need for accessibility for depression. Taking pain medication doesn’t invalidate the need for access to mobility devices, for access to schooling, for access to all parts of society. Taking anti-seizure medication doesn’t invalidate or eliminate the need for people to reduce or eliminate seizure triggers in public spaces.

Acting as though chronic illnesses or even just severe temporary illnesses like cancer, are not disability further plays into the ableist idea that people have to prove they’re “disabled enough”. Many people with chronic illnesses struggle with insecurities related to their own disability. We feel as though we are doing something wrong by asking for accessibility.

It took me years to work up the courage to ask my doctor for a disability parking pass. Being forced to park far away from the doors often led to being in more pain. It meant I was losing more energy of simple errands than I would if I could limit how much walking I have to do on bad pain days. Some days, I have seconds to find a spot that is close enough to the bathroom that I can hope to make it in time. In these situations, the reserved space for disabled people is often the perfect option. I have my pass now, but even so, I find myself feeling guilty at times using it. What if someone comes along who needs the space more than I do? Do I have a right to reduce my pain, the occurrence of public bathroom accidence, to preserve my limited energy? Am I disabled enough?

All of these questions are all the result of the medical model, which treats disability like it is a binary and permanent state, rather than one of degrees which can be incredibly fluid. It makes us question whether we “deserve” to partake of accessibility resources since they are kept so artificially rare. If instead we had a society that treated accessibility as being a right rather than a privilege, we wouldn’t have to compete for these resources. Instead we would live in a society that made it possible to function and thrive as a person in pain.

What about people who are disabled in more socially understood ways, like deafness, or blindness, or autism, who want a cure?

To start with, understand that many people who want a cure, want it because society makes it hard to exist otherwise. It would be like wanting a pill that would turn you straight because the world treat homosexuality as if it is something evil and not because it is evil in and of itself.

Our society is constantly telling us that we are less than; that we are burdens on the people we love and on society itself; that we are not worth keeping alive and that in fact we are better off dead. Imagine being an autistic child and turning on the TV to find one of those commercials from Autism Speaks about how Autism ruins lives. About how Autistic children ruin their parents lives, their chances for happiness. In that moment, what are you likely to think about yourself? Probably nothing good. This is the reality we live in as disabled people, so the desire for a “cure” isn’t necessarily because we want to change us, but because we don’t want to be treated this way anymore.

In order for it to be an ethical choice, one option cannot lead to punishment. If you punish someone for not taking a cure, how is it different from forcing them to take it?

If we managed to live in a word, however, where it really was a choice, the ultimately it is up to the individual as to what they want to do. People alter things about themselves all the time both temporarily and permanently, regardless of whether they need to. At the point where it can be a choice without either option being treated as being morally superior, or resulting in a changed ability to function and thrive in society, then its personal preference.

Until that point, however, the desire for a cure must be taken along with the consideration that it is the result of pressure and punishment, and not really a consensual decision.

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What About People Who Want a Cure?

8 thoughts on “What About People Who Want a Cure?

  1. 1

    This is still kinda hard to parse. Let’s say the impairment is chronic pain. Under the social model, a society that accommodates constant opiate high would be the thing to aim for? I’m down. Still not sure I understand it all.

    1. 1.1

      Under the Social Model:

      1. We would make access to pain medication (whether opiates, or mmj, or whatever else works for a given person) affordable (free), and easy.
      2. We would acknowledge that treating pain is not a failing or a shameful thing to do.
      3. We would make treating pain a priority over preventing addiction, and work on treating addiction if it occurs.
      4. We would work on preventing addiction by reducing social isolation on the part of people who need pain treatment.
      5. We would make people who struggle with pain not have to worry about survival by actually giving them enough money to live on.
      6. We would come up with solutions whereby people who experience chronic pain would be given access to accessibility devices to reduce their pain: mobility devices, tools to make lifting, twisting, etc. easier. Access to a support worker who could help them with household chores.
      7. Create more accessible housing where being able to live depends on ability to be able to climb stairs, bend or climb step stools, etc.

  2. 3

    I’m autistic and I hate that I am autistic, and would even if it didn’t have sociocultural negatives associated with it. I despise the way my mind processes information and how it handles interactions with other humans. I’m fine with other people being autistic and being OK with it, but if I had the choice I would not want to be autistic myself.

    There is of course no such thing as a cure for autism, but if such a thing did exist, and I had reason to believe that what emerged afterward would still recognizably have “my” personality, I would at least consider it. Am I wrong to want this for myself?

    1. 3.1

      It’s a matter of bodily autonomy. If you really want a cure, then that’s your thing, just as long as you don’t try to force a cure on others or try to make it seem like a cure is the only option.

      I can’t speak for you though, but I wonder how different your interactions with other humans would be though if you were in a more autism friendly environment. Both Alyssa and I are likely autistic and both of us have found that when our friends are also autistic that the difficulties we’ve experienced with neurotypical people just don’t happen the same way. Like I said though, to each their own.

  3. 4

    Thanks for posting this. It speaks a lot to my experience trying to get government disability pension, where they first interview you to see how job ready you are (apparently if you pass this step, only *then* do you get a medical assessment), and check you against a list to see if you are disabled enough. It seemed to me that if you don’t present physical symptoms visibly in that interview in an ‘expected’ manner and if the symptoms you spoke of fluctuated, that you simply weren’t disabled at all.

    1. 4.1

      It’s not even the only place where that is the case too. I wrote about this in my post about Docs deciding who is a drug seeker. They expect you to perform as they expect, not taking into consideration that someone who has chronic pain won’t act the same way as someone who just broke their arm.

      The standard advice when applying with disability seems to be, act as if your worst day is the standard since that’s all they’ll understand.

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