Just because someone seems open about their disability doesn’t mean that they have no personal boundaries about it. graphic by Emma Palmer

Out of Order: My disability and its personal boundaries

Whenever I meet someone new, I often get one of two reactions to my disability: First, they insist that they absolutely know the cause of my mysterious disability; Second, they try to convert me.

I’m pretty open about my disability, if that weren’t already apparent four weeks into my column on the topic. My own experience aside, I, and other disabled people, deserve personal boundaries.

Let me explain these two reactions.

The first one comes about from people asking me questions about my disability. I will often answer questions about my various ailments. Most of my symptoms are pretty vague; fatigue, pain, weakness, passing out and brain fog aren’t exactly earth-shattering names without context.

So, when I let a person know I ultimately don’t have a diagnosis, it’s almost inevitable that the person lets me know what they think it is. Sometimes it comes about by them saying, “Well, my cousin’s girlfriend once was tired and in pain too, and they have [insert whatever they think is a relevant disease].” Other times it comes from something they saw on TV.

I know they are trying to relate and help me in some manner, even though it is emotionally exhausting to listen to someone new try to diagnose me.

The worst, however, is when they pull diseases out of a hat, often based on some vague notion of the disease. Once, when I was working a desk job on campus, I had a stranger ask if I had ALS after I gave a brief synopsis of my medical history. To those of you that don’t know, ALS, or Lou Gehrig’s Disease, is a progressive neurodegenerative disease with no cure. It’s usually fatal in fewer than five years of diagnosis.

With no proper indication, a stranger essentially tried to tell me I was dying. Maybe they didn’t truly know what ALS entails. Maybe they were trying to be helpful. But regardless of the attempt, it is never okay to tell something that they think you are in the process of dying a horrible death.

Often when people try to diagnose me on first impression, I don’t do anything to correct them. It’s exhausting to try to educate people about the basics of your own life. I know that, in a twisted way, they are trying to reach a way to relate to me and my struggles. Ignorance does not excuse rudeness, however.

When people try to play “guess the disability,” they are trying to assume something deeply personal that is going to affect the rest of my life. It’s not a little game, and it’s not a just a little suggestion on something that will vanish after this conversation like what to eat for lunch. Whatever ailment I actually have likely isn’t going to go away anytime soon; it’s been around for over five years, it most likely will be here for at least another five, if not for the rest of my life.

This comes from a lack of boundaries. Because my disability is such an obvious, visible part of my life, people act like its okay to comment on it. But just because something is obvious about someone’s life does not mean it’s subject to small talk.
The second reaction I’ve often experienced is people attempting to convert me.
Personally, I am not religious. However, I respect people’s religion; religion is important to many people. But it’s also important to respect someone’s lack of religion.

On many occasions, I have explained my symptoms to strangers and they ask if I have turned to God. Whenever someone experiences something negative in their life, it’s not uncommon for them to turn to religion. What I didn’t expect was for people to push other people to turn to religion in hard times.
I’ve had people tell me that everything will be cured once I come to God. I’ve had people tell me they think God placed this mysterious disease on me to make me come back to him. And, I’ve had a stranger put their hands on me and try to pray it away right there on the spot.

The action of others trying to convert you because of your disability is insulting on multiple levels. First, it implies you are less-than because you have a chronic health condition. Second, it implies that this incompleteness is from a lack of faith in a God you don’t believe. Third, it’s not respecting your autonomy as a human being to make your own decisions.

And it’s not just because I live in the Bible Belt. I’ve noticed a massive uptake in the attempts of strangers to convert me since I’ve had a visible disability. I’m not sure if people think I’m an easy target to corner in my wheelchair, if they feel guilty that my disability is “happening” to me or they’re trying to save me before they think I’m going to die, but regardless, it’s not an OK boundary to cross with a stranger.

Besides these two initial reactions to my disability, I also face a lack of physical boundaries in my personal space.

One example I like giving is a time I tried to put on a jacket while in my wheelchair. This particular instance, I was struggling to find the hole to put my arm through, and all of a sudden I felt someone come up from behind me and push my arm into the correct space.

This stranger assumed they knew what was best for me when they were trying to help. Had they asked me if they could help, which I would have been perfectly fine with, I would have politely declined. Sometimes disabled people need a little extra help, such as opening doors for people in a wheelchair.

I don’t mind offers for help. I do mind people assuming what’s best for me, my body and my soul.

These all come down to personal boundaries. In all of these circumstances, if people had asked if I wanted to know what they think my disability is, or if I wanted to hear about their religion, or if I needed help with a physical task, I would have been okay with their inquiry.

People assume disabled people don’t know what they want. People often infantilize disabled people. Sometimes people will even talk to me in a baby face. They’ll assume that we don’t know what we want.

Even if we need extra help from time to time, we know what we want. We are our own advocates. We deserve the same boundaries and respect as able-bodied people.

Post Author: Madison Connell