In the Blog
The Costs of Conforming
One of the things that continually astounds me about being disabled is just how incredibly expensive it is. Almost no matter what area of life you look at, it costs more to be disabled. While it doesn’t surprise me, it also infuriates me how little recognition there is of that fact. There is virtually no recognition that as a young disabled person, my cost of living is exponentially higher than a non-disabled person’s.
Despite the fact that I have multiple disabilities, so my case may be different from others, I’m going to use it anyway, because many people with disabilities have multiple disabilities.
First case in point is medication. If you are healthy, your monthly medications may include some over the counter things, perhaps birth control, and maybe if you get sick, a course of antibiotics. If you are a student, most insurance companies, if you aren’t lucky enough to be covered under your parents insurance plan, cover about 80% of your medication costs. One of my drugs is $250 per month, and another, $150. Not too long ago, I was on a 10-day course of medication that cost $700. 80% coverage doesn’t go very far when you are looking at those kinds of numbers. Although there are programs in Canada to help with some drug costs and they can be claimed on income taxes as a tax write-off, when you don’t have the money in the first place, it is really hard.
Second case in point is food. Many disabilities have dietary restrictions or strict diets for many different reasons. However, when you require specialty items and can’t just buy whatever is cheapest, expenses quickly add up. I will also add here the idea of food as entertainment. I know that going to restaurants that cater to all of my and my friends’ dietary needs is often far more expensive than just going to whatever hangout is closest. When also taking into account what is and isn’t accessible, someone may have far fewer options just by virtue of what they can access.
Third case is accessible housing. I personally live in an apartment that we’ve made fit my accessibility needs mostly rather than a truly accessible apartment, however, I can still make the case that requiring accessible housing is more expensive, simply because you are more limited in options. High-rises, which tend to be more accessible, are typically more expensive to rent than older walk-ups or basement apartments. So once again, you are paying more for a basic need.
Then we haven’t even touched on the cost of accessible devices, even for basic needs. For me to get around safely I need canes, a walker, an electric scooter, and the day dictates which I use. Someone may need to use Wheeltrans, which costs the same as public transit but can be more expensive in terms of time and productivity lost to waiting for it. Assistive devices are sometimes covered under insurance or provincial plans, but often to a degree that is not helpful. A single hearing aid can cost upwards of $2000 (this obviously depends on brand, newness of technology, etc.) and the Ontario government provides $500 toward it every 5 years. Many other devices are covered at 75%, but the remaining 25% is still the responsibility of the person with the disability, unless they are receiving income support from the government.
Also for many, though not in every case, schooling for a person with a disability can be more expensive. A common accommodation is a reduced course load - so common, in fact, that in Canada, the government considers a student with a disability to be a full-time student at 40% of a normal course load. If you take longer to get through your education, you pay more in tuition and student loans (if you have them). If you drop courses due to your disability, even if you manage to have fees refunded, the refunds are never as much as you initially paid. When you look at the fact that disabled people are often unemployed or underemployed and earn substantially less than non-disabled peers (Check out the PALS survey from 2006), having to pay back a higher student loan makes even less sense. With school also comes scholarships and budget forms that are incredibly normative. Many of the forms I see have an $800 limit on the amount that you can claim for personal expenses including all clothing, medications, entertainment, etc. Considering that I have over $600 of medication expenses alone since May (That’s just my 20%), that line doesn’t go very far in my life. The year I got my hearing aid, that alone wiped out the entire category and then some. It was a form where disabled lives weren’t taken into consideration.
The thing that frustrates and baffles me about all of this is disabled people spend all of this money to fit into a non-disabled world. I don’t actually need a hearing aid for me, if you think about it. I know ASL, I can communicate just fine, and I go through my day-to-day life with very little difficulty without a hearing aid. However, I wear it to fit in with a hearing world that does not communicate the same way I do. I do it so that other people can interact with me more easily. I use mobility devices so that I can go out and participate in the world the way that non-disabled people have decided I am supposed to. While I do receive benefits from these things, and hey, eating the right food to stay out of the hospital and having meds that help control symptoms are wonderful perks, those are still expenses that I have to live and contribute in a non-disabled world. It makes me think about how so often disabled people are considered to be living off of the system and taking advantage of government benefits, when in reality, the few benefits that there are don’t come to near enough to meet some of the basic needs we have as disabled people. It just seems so counter-intuitive to provide minimal support to a group that is accessing supports so that they can participate in a world in ways that non-disabled people dictate.