The Others: Being Disabled and Challenging Social Norms
By: Brian Rivera
Tags: Rights, Dating, Disability

Here’s the thing about being disabled. You have to spend a lot of your time solving problems other people don’t have to really think about. Some of those problems aren’t so bad. For example, I might drop my phone and have to find someone to pick it up for me. Inconvenient, but not a big deal.

Then there are the other problems. What I’ve found is the degree of complexity of any disabled problem tends to have more of a correlation to social acceptability than anything else. Case in point, I spend a concerning amount of time figuring out how I’m going to go to the bathroom each and every day. There are obvious solutions to this particular problem. I could get a catheter, but I’m not going to do that. For one, they’re painful and prone to infection. Also, it gets in the way of certain other activities. You probably don’t need to use your imagination here to figure out what I’m talking about.

Quick tangent. Sexuality is one of the one of the best examples a topic that disabled people have to figure out how to deal with that is extremely socially unacceptable to discuss. I know this because a lot of disabled friends have reached out and suggested I write about this and I just can’t bring myself to do it. It’s not that I’m embarrassed or shy or anything. Point of fact, I actually feel somewhat guilty for avoiding the topic altogether because it speaks to a lot of the stereotypes and assumptions that people make about the disabled. I even have some really great stories that articulate all that. The real reason I won’t discuss it is some of my friends read my blog and there are just some things you would rather not know about your friends.

So here’s what I will say. People often ask the following question in the most awkward way possible, exactly as I’m about to phrase it, almost as if everyone got together at some point and decided that this was the best way to ask it.

“Um, can you, well, you know?”

When you see a disabled person, assume they can “you know.” In fact, assume we can do most things. We’re all human, with the same wants and needs as everyone else, and there’s really nothing wrong with saying that.

Back to the bathroom thing. This is a challenge socially because, at the end of the day, someone has to help me with it. I have a few friends that help me with this on a daily basis and, as far as I can tell, they really don’t mind. The problem arises when none of these friends are around. There’s nothing as uncomfortable as driving into a bathroom and asking a stranger to help you go pee. A surprising percentage of people are more than willing to assist, and an even more surprising percentage don’t seem to be at all bothered.

Here’s another common problem. A lot of places aren’t ADA compliant. It’s a little frustrating to hear the uproar about transgender bathrooms and how willing people are to chime in on prejudice when there are still so many people that can’t even get into the bathroom. And I do mean that quite literally. Some places don’t have a stall big enough for my wheelchair, so I have to park in the middle of the room and just go in front of everyone, which is pretty embarrassing. Other places don’t even have a door big enough for a wheelchair to get into the bathroom, so I have to hide behind the building and hope we don’t get caught. Or you can hold it and sit in a very special kind of hell because some building wasn’t compliant.

Then there are the problems you simply can’t anticipate. My friend and I were at a party one time and I asked if we could go to the restroom. About halfway through, he leaned over to move my arm and stood up too fast, smacking his head on the rounded ceiling, knocking himself out. I heard a thud as he hit the ground and my mind went into a spiraling panic. What do you do in that moment? Do I call for help? Did I just kill my friend? I couldn’t backup because he fell behind me, so I couldn’t get out to find help. Also, it wouldn’t matter anyway because my pants weren’t up, so I couldn’t really leave the bathroom. It was in that moment that I realized that this was the exact kind of problem only a disabled person would ever have to deal with. Also, what kind of an asshole architect designs rounded ceilings like that? What possible purpose could that serve other than to cause this exact situation?

After about five minutes of trying to figure out if I could push my friend with my wheelchair without running him over so I could go get help, he woke up and was, or course, very confused. Needless to say, I felt pretty guilty for the rest of the night. Fortunately for me, he now laughs about it and thinks it was still a fun party. Also, now I can tell people that I knocked him out that one time.

Another socially challenging thing for disabled people is having children. This one is really challenging because, well, let’s face it: most people hope they don’t have disabled children. One of the things people say is they just hope they have a healthy baby, which is another way of saying not like me. It’s unsettling to think about. In terms of math, I’m relatively safe. One in forty people are carriers of the recessive gene that causes my disability, so there’s only a 2.5% chance my wife and I could have a child that was disabled. Assuming she fell into that 2.5%, there’s a 50% chance that our child would have what I have.

May the odds be ever in your favor.

Then it becomes difficult because I can’t actually care for a child. I can’t hold a baby or feed one. Once the kid hits four or five and effectively can do most things, I could start to play a role in the child’s life. Until that time, I couldn’t really do much. So when someone asks me if I want kids, the answer is that I like kids but there’s a 2.5% chance I would have a disabled baby and my wife would have to care for the child for the first few years (and me). Do with that what you will.

And then the spiral really gets out of control. Is it really good for me to be dating at all? Talk about cart before the horse here. Statistically speaking, I’d strike out well before the topic of reproduction even became a concern. But what happens if I find someone crazy enough to deal with my inner five year old personality? Is it fair to drag someone into this world? I’ll come back to this topic later.

Here’s another very different way of looking at your life when you’re disabled. When I was ten years old, the doctors that specialized in my disability told me that my life expectancy was 20 years old. That’s a very disturbing thing to hear when you’re ten. It’s also tricky because you can’t talk about it. When someone asks, “Where do you plan to go to college?” the response they aren’t expecting is, “I don’t plan to go to college because I’m going to die before I would graduate.”

Then a very weird thing happens. You hit 20 and your first thought is, “Am I going to die this year?” I went back to the doctor and they told me that they were wrong before and that my life expectancy was now 30. While this was great news, it kind of threw a wrench in my life plan. Instead of dying this year, I needed to plan for ten more, but really only ten.

Then another weird thing happens. You hit 30 and go back to the doctor. They told me that due to scientific innovation and such, my life expectancy was now 40. The first thought the voice in my head uttered was, “If the current rate of scientific innovation persists, my life expectancy will extend by ten years every ten years, which means I’m never going to die.” The second thought it had was, “Do doctors not know what math is, or is that trait that determines whether or not you go into engineering? Good at problem solving but can’t do math? Become a doctor.” The next thought I had was, “I’m kind of being an asshole right now,” so I decided to say, “Oh, cool, right on.” I also decided to stop asking the doctor how long I was going to live.

Now back to the dating thing. One question I heard a long time ago among my friends was, “Where do you see yourself in ten years?” They said living in a house, maybe with kids, so on. The answer in my head was very different. “Either dead or at the doctor’s office being told I was going to live to 50.” Is it then fair for me to bring someone into a relationship that will probably only last ten years at best? Again, cart before the horse, but it’s a fair question.

I know I talk about it a bit lightheartedly and it kind of throws people off. I think that, for me, it has always been a reality. I used to attend a summer camp for disabled people like me and there was a family of five kids that all had the same disability. Every year at the talent show, they would do a group show, but every few years, there would be one less of them. Four boys and one girl. Three boys and one girl. Three boys. Now they have all passed away. The part of this story that upsets me the most isn’t that they passed away.

The upsetting bit is that I can’t remember their names.

Because of that exposure and the constant thought that it was going to happen, it’s not really a concern of mine. I can talk lightheartedly because it’s just something that happens, but it isn’t something other people are eager to dive into. Other people really are concerned. The trouble is that sometimes it’s something that would be nice to talk about. This is a problem I have. This is a concern I have. This is a reality of mine. But I have to keep it to myself.

A lot of being disabled is about tackling problems by yourself. No one else knows about the challenges we face because we have created a world where certain topics are off limits. They’re simply inappropriate. My hope is that people start challenging themselves on what they consider acceptable. The more open we are, the more we can face together, the less we have to handle alone.