Young, Sick, and Invisible Excerpt: What is Normal?

The concept of normalcy is confusing, and ultimately harmful. Normalcy implies that there is a standard, a norm, for all experience and behaviour. The normal human being can see, hear, walk, move in a certain way, speak a certain way, act a certain way. Where this concept runs into problems is that it doesn’t hold up under examination. No two human beings see in exactly the same way. We have long known, for example, that the perception of colour changes from person to person. The green I see is not exactly the same as the green you see and so on. We also have varying degrees of sightedness. If this were not the case, we would not have so many people who wear glasses. Our concept of normalcy is that you can see this clearly at a certain distance. For convenience’s sake, let us call it 20/20. A close examination of our society however would probably reveal that the majority of the population does not correspond to those criteria, that in terms of population, the percentage that can actually see 20/20 is actually quite small. Despite this however, our concept of normalcy is still centered on 20/20 vision.

We’ve already seen the way the concept of normalcy backfires in other aspects of our society. It was once thought, for example, that the normal human being was white-skinned. As much as we would like to think otherwise, this concept of normalcy is still prevalent in our society. This concept is what continues to influence racism: I don’t have to treat people who are not white as human beings because they are not normal.

Other examples of normalcy include sexual orientation, sexual expression and desire, gender expression, and more. Time and time again, concepts of what is normal backfire and are ultimately shown to be untrue. People who are completely straight and interested in “normal” sex, and fit completely into the established normal expressions of gender and gender roles are ultimately rare, if they truly exist at all. Think about that. A personified model of normalcy doesn’t actually exist. There is no completely normal person out there. Moreover, what is considered normal changes from one society to the next. If normalcy existed as a standard, it would be the same regardless of whether you are presently in society A or society B.

As long as we maintain these standards of what is normal, we will continue to run into systems of oppression simply because the real human norm is diversity.

This is not to say that we shouldn’t celebrate the accomplishments of people with disabilities or people from other minorities. Their accomplishments deserve to be lauded the same way as anyone else’s. Rather, my problem with many of these stories lies in that they ignore an important truth – the reason their stories are impressive is because our society is not accessible. The stories are not about celebrating accomplishments but rather about easing our own guilt. They are accessibility’s version of the republican’s bootstraps story. By showing how one person can overcome the obstacles we as a society have thrown at them, we can pretend that those obstacles really aren’t all that bad or even that they don’t exist. That anyone complaining about those obstacles is just lazy, or looking for an excuse, or a “professional victim”.

In many cases, the stories of people with disabilities really are impressive, but they shouldn’t have to be. In a society where we have incredible capabilities for technology and innovation, the ability of a person to succeed should not be limited because of a physical impairment. It is not our physical conditions that dis-able us, but rather society itself.

If you ask most able-bodied persons whether our societies are accessible, most will answer yes. After all, elevators exist almost everywhere and we see ramps all the time, so clearly accessibility must not be an issue. If you think this way, I offer you a challenge. For the next week, every time that you had to use even so much as one stair in order to get somewhere, I would like you to put a dollar in a jar. This includes going to a store, coffee shop, classroom, workplace, restaurant, event, house, apartment, anywhere really. For one week, every time you have to use the stairs or inaccessible entrance in order to not be late, because the accessible entrance is far out of the way, I want you to put 50 cents into the jar.  Every time you encounter an entrance that doesn’t have automatic capabilities or that the handicapped button is broken, I want you to put 50 cents in the jar. I guarantee that if you are aware and honest, by the end of the week, you will have an impressive sum of money.

When we discuss accessibility there is a tendency to think of only certain types of disabilities. As long as we cater to those, we consider ourselves accessible. Ultimately however, that leads people who don’t fall within those specific categories being disadvantaged. I will give you an example from personal experience: During the period where I had to walk with a cane, I had a hard time using the stairs. Going up stairs was painful as it engaged my hip more than many other activity. Given the choice, I preferred to take an elevator. More often than not, however, the elevators were placed in areas far out of the way. This would force me to have to walk for longer periods of time, a process that was also extremely painful.

For Ottawa residents, you may or may not be familiar with the UOttawa Campus bus station. It is one of two transit way stations that service the University of Ottawa campus. The Campus stop services the science and engineering buildings.  The eastbound stop is across from the university buildings. Rather than risking students having to cross a street filled with buses, they built an underpass. There is an elevator on the eastbound side allowing access to the upstairs station; however, in order to get down to the underpass, there are no elevators. Instead, the university has built a curving ramp on either side of the long stairs leading down. There are also steeper stairs that lead directly from the westbound station to the underpass.

For someone with a wheelchair, access is assured with the ramp. For someone like me however, the choice is either going several meters out of my way, followed by a long trek down a ramp, or braving steep stairs. Moreover the steeper stairs next to the westbound station also happen to be closed off most of the time in winter. This may not seem like a big deal, but the choice to add a long ramp rather than an elevator means more pain for me and anyone else in a similar situation. It means taking the risk when you choose to take the shorter route of the stairs – more pain but over a shorter period of time – that your leg will give out somewhere around the middle step. I’ve had that happen. I know what it is like to have your leg suddenly stop working right at the most dangerous moment. So much am I familiar with it that, even years later when my leg giving out is no longer as big a concern, I still experience a moment of severe vertigo and flashback when standing at the top of a flight of stairs.

Young, Sick, and Invisible Excerpt: What is Normal?

11 ways ELITE DAILY used ableism to make a point about relationships.

I understand the impulse towards showing your best self at the start of any relationship. I do and have done it as well. You want the other person to like you and you are terrified that if they find out how flawed you really are, that they won’t.

So you put on make-up and wear your hair down. Maybe you wear a skirt, or that itchy shirt that you look amazing in. You might show a little more interest in something than you otherwise would. You don’t lie, not at all; you just never realized how interesting this actually was.

It is human nature and it is fair to mock it. But then lists like this one come out that point out how the acceptance of “gross” things that mark a committed relationship. I look at that list and the first thing I think is: How nice it must be to be abled.

I am going to borrow the list and instead talk about the ways in which it is ableist as fuck. And So my wonderful readers:

11 ways ELITE DAILY used ableism to make a point about relationships.
((The following list is a direct quote from this linked article and does not belong to me. What does belong to me are the comments between the number.))

“There’s no demanding need to shave.”

Ok so mandatory feminist statement: There is NEVER a demanding need to shave. But let’s talk for now about some of us who enjoy smooth legs, I among them. My decision not to shave has nothing to do with a lack of caring, but rather a decision not to inflict pain on myself.

I have a permanently damaged hip. I cannot bend in a way that makes shaving comfortable. I literally cannot reach certain parts of the leg. This also created a much bigger risk of cutting myself. So I don’t shave except as an occasional treat for Alyssa or myself. This decision had nothing to do with the quality of our relationship. Actually the first time Alyssa and I hooked up, my legs were hairy with several days growth.

“You fart in front of each other.”

This presumes control of bodily function. This presumes that everyone gets to decide if and when they fart. This presumes so much, that many of us don’t get to decide.

“Poop is discussed in any capacity.”

I wish I got to decide, I didn’t. Having an accident in the middle of a midterm made that decision for me. What is worse, is that as early as that happened in our relationship, that wasn’t even the first time the subject came up. People with digestive issues, people with chronic diseases, people who have had bowel resections or live with colostomy bags, people who have had their lower bodies paralysed in such a way as to lower their ability to control their bowel movements, all of these people like me might not get to decide when we start discussing poop.

“You let him pee in the shower when you shower together.”

This presumes that he has control over his urine.

“Morning breath doesn’t gross you out.”

During crohn’s flare ups, I have to make the decision whether it is better to brush my teeth and throw up or whether I shouldn’t brush and as a result not spend my morning throwing up bile. Morning breath is the least of my concerns.

“Sicknesses don’t make kissing off-limits.”

I am immunosuppressed. My partner not kissing me when they are sick has nothing to do with how much I love them or how much they love me. That decision is based on the fact that a two day cold for them could be two weeks of misery for me. It could mean having to postpone my Crohn’s medicine and adding a flare up to things that are wrong with me. Just now I had the flu that lasted for two months. Near the end I couldn’t tell whether it was the virus causing me to throw up or my Crohn’s.

But let’s ignore contagious sickness for a minute, and focus on other definitions of sickness such as say vomiting. I can’t tell when I first threw up in public in front of Alyssa. I do remember the warmth of the hand massaging my back while the other held back my hair. I do remember that we hadn’t been dating that long that the kiss that followed was in any way required.

“Weight gain isn’t a big deal.”

Weight has been my cross to bear for as long as I can remember, and now more than ever it is intimately intertwined with my disabilities. My weight gain, my diet, my exercise are all things that keep me up at night. The implication that it should be a big deal or affect the intimacy of my relationship keeps me up even more. The social perception that fat people like me are not entitled to love is such a pervasive bit of fat shaming that it has formed our whole script surrounding relationships. If you don’t think so, I dare you to watch every episode where a man has to prove his love for his wife by realizing he loves her enough to find her sexy when she gains weight.

“Despite all of this, you actually still find your significant other sexy.”

This is the one that cinches it all. That underlines the problem. Everything on this list is considered gross and unsexy, and all of it can be related to disability. I haven’t listed everything here so as not to be redundant and not because there is one thing on this list that isn’t in some way ableist (and also possibly cissexist, transmisogynistic, sexist, classist, and so forth). These things are considered gross, as are the people who do them.

For many of us with disabilities, these things are a major part of our lives. In other words, according to this list, I am gross. I am unworthy of love. This is just yet another perpetuation of the social idea that people with disabilities are sexless and loveless. It is a lie, a damned lie, and damaging to many of us.

On the day that I received my diagnosis of arthritis, I cried. Nothing major had happened yet. It hadn’t really factored into my life at all yet except as an occasional twinge of pain which pills took care of. I had no idea what was coming. I had no idea that by that time the next year I would be in a wheelchair after several months of walking with a cane. For all intents and purposes, the diagnosis was a name for something that hasn’t really happened yet. It was nothing! And yet, I cried. Why? Because I was convinced that it was this news that would doom me to dying a virgin. That I would never marry, never find love, all because I had a diagnosis that others might find scary.

I wasn’t disabled yet and I already knew what the social script had in mind for me.

And lists like this don’t help. Because they just serve as a reminder to all of us, that us disabled folk better not get too uppity by thinking that we are entitled to being treated like human beings.

11 ways ELITE DAILY used ableism to make a point about relationships.