Is Disability Misery?

One of the barriers in fighting for disability rights is that a lot of people can’t get over the idea of “Isn’t disability a bad thing?”

It’s not like fighting for gay rights, or race rights, where we understand that being gay or being a person of colour is not a bad thing, having a disability is a bad thing, right? Sure disabled people aren’t to blame, but like… we should still be trying to stop disability and it still is a bad thing. I mean… no one wants to be blind, or deaf, or have cancer, etc. etc. etc.

I have said it before:

We as a society have this concept that people with disabilities, especially those receiving disability assistance are lazy, sad, and pathetic. That they are deserving of pity. There is an underlying current of society that holds the belief that the words “I am disabled” actually mean “my life is not worth living”. In a culture that prioritizes what any given person can do, how productive they are, it is not surprising that this is the case. Our worth is dictated by how useful we are, and people with disabilities are assumed to be useless to society as a whole.

There is active pressure from society to not identify as disabled, pressure to consider “being disabled” a bad thing. It is this same impulse that leads friends and family to say such patronizing things as “The only disability is a bad attitude” or “You’re not sick, you just need to think positive.” They cannot understand why we would do something so “negative” like be disabled or worse yet, talk about being disabled. For me finally admitting to myself and eventually the world that “yes, I am disabled” was incredibly liberating.

Most of our society subscribes to the medical model of disability that sees any and all deviation from the norm as something that has to be cured.  Proponents of disability justice often point to the social model for disability instead, which suggests that the true problem with disability is not some flaw that needs to be cured but rather as an individual characteristic that happens to differ from the average, such as for example homosexuality differs from the average, etc.

For many disabilities, the part that affects them is less the actual disability itself but rather the social response to it that creates problems. For example blindness in itself is not an impairment. We have the technology necessary to make the world completely accessible to someone who is blind. The problem is that people don’t consider making the world accessible a priority because the assumption is that people who are blind are already miserable or already disabled simply by virtue of their reduced sight. We actively put barriers in the way of accessibility by making it unaffordable or only available in certain places. We assume misery because we stop and think about how we would feel in that situation. It’s not an unfair attempt at empathy, except when you consider that the perspectives are heavily biased. Someone who has had good or at least well-spectacled eyesight, would see losing their sight as a misery because they’ve learned to navigate primarily by sight. For them, not being able to see would be an impairment.

For someone born or who has become accustomed to their blindness however, it’s not a matter of having lost something. It is the way things are. Where their lives are impacted are through the unwillingness of society to integrate blind people. This lack of integration creates additional barriers by making it difficult for a blind person to find gainful employment, which in turn impacts their ability to survive, let alone thrive.

This is not to say that no one who is disabled doesn’t regret their disability from time to time. But even those of us who deal with conditions that are a hindrance in and of themselves, that doesn’t mean our lives our miserable.

I live in near constant pain, between my joints, my digestive system, I can’t really remember what it is like not to feel some kind of pain. But most of the time my life itself is not misery. I can still enjoy a pleasantly warm evening, having a cold drink.  I can still laugh and have fun with my partner as we cook dinner for some friends, or go to a fun movie. The parts that make me really miserable is the social isolation imposed by my disability.

Being disabled means that I can’t work traditional jobs. Most places are not too thrilled at the prospect of an employee who could need upwards of 60 sick days a year, who periodically needs a nap at some point during the day, who needs to smoke pot pretty just to be able to stay out of bed, or the bathroom, or the hospital. At the same time that disability increases my likelihood of living in poverty, it also increases my overall expenses. Parking at the hospital adds up, even when my meds are covered. Not all of my meds are covered, and neither is the different diets I need. Limited mobility means that access to a vehicle is pretty important if I have any hope of being able to get around, get groceries, etc. Of course all this is on good days. On bad days, going out to get groceries is out of the question. On those days, I either need to make my partner do it or go without, or spend money we don’t have on food delivery.

Disability can sometimes hinder your ability to go out. Not necessarily because I don’t want to, but because the things that I would need to make it possible are not available. I need to be able to medicate regularly in response to my pain. If I’m feeling ill, this could mean having to spend huge chunks of time outside as I struggle to get the effect in short burst of time that I otherwise get through medicating regularly throughout the day. This could be solved if I had access to some of the alternative methods of taking medical marijuana, such as those e-cigarettes which are more useable indoors, or better yet a THC patch. I need to be able to take a break if I get overwhelmed, a place to go to be quiet or do some activity that doesn’t require my active participation.

Often when I get overwhelmed or my symptoms act up, my only option is to go home. This usually means that those with me are forced to go home early, meaning that sometimes going out means pushing myself past my point of endurance so I don’t feel guilty about ruining other people’s good time.

The social isolation imposed by the lack of accessibility adds to my disability.

But shouldn’t we be looking for cures?

This is a more involved question than one would expect, and feeds into a debate over whether chronic illnesses should be included in disability activism.

The decision of whether or not something requires a cure is ultimately the decision of those people living with the disability in question. Not everyone who is deaf wants to hear, in fact many people who are forced in one way or another to undergo cochlear treatment, end up feeling as though they’ve lost something in gaining some measure of hearing.

The search for a cure often distracts from the implementation of accessibility. One major example is organizations that encourage people not to donate to programs that raise guide dogs but to donate to cures for blindness instead, on the basis that helping cure blindness is the better course of action. The problem with this is that a. not every disability is curable and not every cure is preferable to the alternative b. not every person wants to be cured and c. many people alive now will not live to see a cure, but in the meantime they are expected to struggle and suffer due to inaccessibility.

By making the priority cures rather than helping disabled people thrive, society is clearly telling us that we are so flawed, that preventing the world from having more people like us is preferable than helping us survive. Think about that, making us not exist is more important than whether or not we starve to death even though we have the means to make that not happen.

Another problem with making cures a priority is the question of who is making the decision over whether or not a cure is even needed. Take autism for example. Many autistics are perfectly happy with the way their minds work, what creates problems is that allistics and neurotypicals punish them for it. More often than not, it is the parents and those who are not themselves autistic who are calling for a cure. Why?

The request for a cure is not because there is actively something wrong with the way autistic people think but rather out of a motivation not to have to do the work necessary in making autistic people an accepted and integrated part of society.

The problem is not that an autistic person might need an interpreter from time to time, the problem is that that interpreter is not treated as such or that access to one is not allowed for. The problem is not that they are non-verbal and choose to communicate in a different way, the problem is that the recipient of this message refuses to allow for alternate forms of communication.

We have created a world that encourages deaf people to learn how to read lips and speak out loud, even though it may be less efficient and lead to misunderstanding, than encourage every child to learn sign language. A world where we place all of the responsibility for integration on the already overworked shoulders of the disabled rather than make is a mutual responsibility.

There was an image set going around a while back, from some TV show or movie. I don’t remember the details but the basic plot involved a deaf girl who was in the hospital as a result of an accident. Her friend arrives, and finds out that she hasn’t been told anything. The nurse arrives to let her know that she has to leave because she is not family. The friend instead goes off on the nurse as to why no one has informed her friend the patient as to what was going on. The nurse uses the friend as an interpreter in order to gather some very basic information and finds out that the patient is in pain, and when she is about to administer a pain killer, finds out the patient has an allergy.

The friend in question at that point goes off on a rant, the basic point of which was that her friend was forced to stay in pain and put at risk of a dangerous allergic reaction because the hospital only paid for interpreters during the week and not on the weekends, and no one who worked in the hospital spoke sign language. There is only one machine in the whole hospital that can serve the function of translating but no one knows where it is. The lesson? That deaf people better never have an emergency on the weekend.

This is reality for a lot of people with disabilities. Our needs are not guaranteed. Ask anyone who has needed an accessibility accommodation, and I guarantee they will have at least one story of a time when it was not only not met, but the act or requesting it was met with hostility.

The simple fact is that accessibility is no one’s priority. It’s not that interpreters are too expensive it’s that other things were deemed more important. It’s not that it is impossible to find locations without stairs, it’s that it would have taken more time to find, or cost a little bit more, or would have involved going somewhere other than the usual.

So is disability misery? No. It’s the abled deciding that it is that make us miserable.