YOU ARE NOT ENTITLED TO DISABLED PEOPLE’S MEDICAL INFORMATION

People are curious about what they don’t know. I get it. I’m curious to know what a wooly mammoth feels like, and how people can read my emotions so accurately just by the way I move my face. [How does one raised eyebrow say so much?]

But there are some things, no matter how curious you are about, that are simply not appropriate to ask a stranger. And particularly, a disabled one.

“Were you born like that?”

The question came from a man sitting across from me on the city bus as I was on my way home from university. I was absorbed in my phone, tracking what stops we were passing so I didn’t miss mine, and more than that, I didn’t think this abrupt question was directed to me.

“What?” I said quietly. No one else had responded.

“Were you born like that?”

I didn’t reply. It was safer than anything that might have emerged from my mouth. But I knew what he meant. Had I always been disabled?

That encounter was years ago, but it was by no means the only time I’ve been asked that question. And the unfortunate reality is that the occurrence of strangers asking after disabled people’s medical information is ongoing, and far too frequent.

Disability happens for any number of reasons, and often, these origin stories are painful and difficult to talk about. I’m fairly open with mine: I became blind due to retinoblastoma, cancer of the eyes, when I was six years old. Both of my eyes were enucleated and I now have prosthetics, painted with the same hazel that I got from my mother.

I’m open about this part of my history. But I choose when and with whom to be open about it. And let me tell you that it is not with a stranger on the bus.

But there are people who became disabled in other ways, such as tragic accidents, attempted suicide, violence, and many more, things that are not appropriate to discuss. Maybe it brings up the trauma. Maybe they don’t want to relive what happened because it’s too painful. And maybe, they just don’t want to talk about it. Because, believe it or not, disabled people do talk about things other than disability.

It is their right to choose how they respond. And that reason also doesn’t have to be disclosed.

There is nothing more private than someone’s medical history and current condition. I’ve never once encountered an able-bodied person on the bus get asked this question.

But every disabled person that I know has been asked at least once, and often in a very insensitive way. Just because we are disabled does not mean that anyone other than the disabled person and their doctor gets to know that information.

At this point, it isn’t even curiosity about the unknown as it is plain and simple nosiness, and a good dose of ableism. If someone believes a stranger’s medical details are theirs to know and asks with no regard for privacy or consent, the disabled person has just been dehumanized and reduced to an object by which to glean information that to be frank, isn’t theirs to know in the first place.

Now, if someone asks me with genuine kindness and interest about my cancer history or my blindness, I’m often more than happy to answer. There’s a difference between curious and nosy, and if one can ask and still respect that what I divulge is my choice, then I’m all for it.

I said earlier that I’ve never seen a non-disabled person get asked so callously for their medical information. You just don’t do that — it’s an unspoken, societal rule of etiquette.

Why then, are these standards tossed aside in the face of a disabled person? When did we become things that exist to indulge and satisfy a stranger at the expense of our privacy?

Our information is free for the taking. It’s rude if we don’t give a satisfactory answer. We’ve offended the asker — how dare we refuse their request?

The entitlement is staggering. The line between personal information and public knowledge is so easily crossed and it both infuriates me and makes me laugh. How, in the 21st-century, have we gotten to a place where people feel entitled to the private information of strangers, simply to satisfy their curiosity?

Disabled people are not freaks of nature. We are not part of a circus display for you to stare at, poke and prod.

We are people. Yes, we have disabilities. But it is not your job, your right or your place to know about it unless we give our full and enthusiastic consent.

So the next time you ask me “were you born like that?” I’m going to take the advice of my mentor and respond with, “You mean gorgeous? Yes, I was born like that.”

I WAS BULLIED FOR BEING BLIND –A MINI MEMOIR

I’m somewhere between four and six years old–no longer sighted but not quite blind–when I’m bullied for the first time. And though the details are lost to memory, the belittlement and fear has never left my body. And I know it never will.

This is that story, the moment when I first learned that I would not always be safe, protected or valued because I was disabled.


“Who am I?”

“Who am I?”

“Who am I?”

Their voices tumble over each other, the cascade of the same mocking, accusing question thundering like a waterfall in my ears. I close my eyes and try to drown it out, but I can’t.

“Who am I?”

“Who am I?”

I don’t remember how I got here. The grassy slope that inclines up to the soccer field was where I’d been rolling down gleefully–maybe not today, but I know I have before–but now, it’s my prison. I’m on my back, my feet above my head at the top of the slope, and like a sheep amongst wolves, I am in the middle of them.

Trapped.

No way to escape.

Their hands pin me to the field, their taunts unrelenting. I can’t see whose holding me down, my vision is already too blurry to make them out. They’re older kids, anyway. I’m too small to struggle, and I’d never win. But there has to be at least five or six.

“Who am I?” comes the mocking refrain. Over and over, they spit the question and laugh. Let the little blind girl figure it out.

But I don’t.

So I stay put.

I don’t know how I get free. But at some point, I’m released from their grip, able to stand and brush the grass and dirt from my shirt, and go inside. It doesn’t happen again, but it doesn’t have to–I’ll never forget.