Things you really shouldn’t say to someone with a disability

Disclaimer:  I’m writing this from a singular perspective and don’t pretend to know how every other disabled person experiences this so I don’t claim to speak on every disabled person’s behalf.  

Some time ago, I made a remark about my eye condition in relation to my love of reading.

I can’t particularly remember what I said (it could have been something along the lines of how hard it is for me to struggle with reading sometimes), but I remember the response to that comment vividly.

That comment was “at least there are audio books.”

Now while I am a fan of audio books (in fact, I love books in all forms), my favourite form is hardback or paperback.

So it’s not so much that I don’t listen to audio novels that upset me than what the actual comment implied.

To give you a little context, I have keratoconus, a degenerative eye condition that causes the shape of my cornea to change. Without corrective and rigid gas permeable lenses, I’m unable to see properly.

I’ve previously undergone a cross-linking procedure to help stabilise my condition but because I’m currently in my early 30s – I’m at a vulnerable stage of my life where this condition can destabilise and force me into another procedure if I don’t monitor my condition or adjust my lenses according to how the shape changes.

If that doesn’t help, I have to consider corneal grafting – a last resort.

I’m currently going through a new adjustment phase that’s wreaking havoc on my eyes, which is actually why I’ve been reminded of that conversation.

To me, telling someone that there are at least other options is the worst form of ableism there is.

What you’re actually doing is placing emphasis on my limitations – a fact that I’m only all too aware of every single day of my life. Not only that, but by telling me to basically deal with it by looking at other options, you disregard and dismiss my right to express my frustrations and struggles.

READ MORE: What it's like working with an invisible disability

Also, you’re offering unsolicited advice on how to deal with an issue you have no expertise in, which brings me to the reason why I’m writing this piece.

I would like to think that most people mean well when interacting with disabled people but sometimes people just completely miss out on social cues and end up making the kind of gaffes that will leave disabled people disrespected.

So if you’re not sure about what you can or can’t say to disabled folk, here’s a guideline that will hopefully help you.

Never tell people that they don’t look disabled

Some people’s disabilities are obvious, while others have conditions that tend to lean more on the invisible side.

Mine is a handicap that can’t be seen. There are other visually impaired and blind people whose state of incapacity are no doubt worse than mine and some a little better.

People who have the same condition experience their impairments differently, so it’s about nuance, understanding and not making assumptions about the emotional or physical well-being of someone.

I would never tell someone that I am more disabled than they are, so what makes it okay for you to imply that a disability is only real or valid if you can see it?

You don’t have to know how people became disabled (unless they volunteer the information)

Not everyone feels comfortable talking about their impairments and that’s something you need to respect.

Whether it’s a handicap due to a degenerative disease or whether they were injured and paralysed in an accident, how people talk about their ailments should not be subjected to your curiosity, unless:

a) they feel comfortable talking about it (I often write about my condition, so I mostly feel comfortable raging, venting, laughing, crying and sharing my experiences, although I do have days where I retreat into my hidey hole), and

b) you are asking about their condition in order to find out how to assist them should they want or require your aid.

The point is to respect people’s boundaries. Chances are that they’ll eventually volunteer the information when they’re good and ready to.

What I am okay with (if you’re an acquaintance):

- You asking me how I’m feeling

- You asking what you can do to help make things a little easier. i.e. do I need a seat in front, should you adjust the lights, etc.

- Giving me advice after I’ve asked you to

Don’t tell us we can no longer enjoy mainstream things

See the audio books comment above. Yes, it’s a little harder for us (some more than others) but that doesn’t mean I should stop reading paperbacks (not while I still can), or stop gaming.

There are many people who work around their illnesses and still partake in events that able-bodied people do.

I’ve learnt (and am still learning) how to adjust my limits in accordance with my condition.

Your concern is noted, but until we get medical advice telling us that we should cut back on an activity, there’s no reason why people shouldn’t be allowed to do what they love.

Case in point: Amberley Snyder, a rodeo champion who has gotten back into the saddle after being paralysed in a car accident. And let’s not forget our own Paralympics gold medallist, Natalie du Toit.

READ MORE: What it's like to be a writer and gamer with a visual disability

Call me a raging mess but don’t call me an inspiration

I’m not your Lifetime story and I certainly don’t want a cookie because I’m taking on the mantle of dealing with a disability.

I was reading a piece on Refinery29 that touched on what it means to deal with having a disability.

In this piece, Imogen Fox says that people who tell her they couldn’t possibly go through what she does implies that being an inspiration somehow means attaching super hero status to the disability and not acknowledging the impaired person’s bodily struggles.

This really touched a nerve with me, and even though I know that people often mean very well, I don’t feel like it’s a moniker that I deserve or want.

I associate being inspiring with those who bear their burdens with the kind of emotional fortitude that I don’t think I have.

I don’t want this condition.

I never have and because of that, I:

a) get frustrated a lot
b) cry and rage often
c) am scared more than you know
d) am often envious of people who don’t have to struggle with their vision
e) will likely sometimes bite your head off if I’m having a particularly vulnerable day.

So, like I said. Never an inspiration, but a hot mess (and a hopefully honest one). And I’ll keep writing about it, because doing so just makes dealing with it a little easier.

WATCH: Things not to say to someone who uses a wheelchair

Are you disabled? What’s the one thing you wish people would stop saying to you? I’d love to hear and feature your stories, so please share!
 
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