Lessons on how to converse with the disabled
I am not a genie in a bottle; I will not be able to grant you a wish if you rub me
After a typical week in my life, I feel as though had I only participated in half the number of conversations, I would still have a sore back.
People I don’t know well, and who I believe are trying to comfort me because I am disabled, often touch me when we talk.
Whether it’s a shoulder rub or a pat on the back, it makes me uncomfortable to put it lightly, and frankly, it’s odd: Needless to say, it does not give me a warm and fuzzy feeling.
Imagine this: You see an acquaintance in the mall, one with whom you share a casual friendship. They come up to you and unexpectedly rub your shoulder or back.
How would this make you feel?
Perhaps the words ‘excuse me,’ would come out of your mouth. Perhaps you would raise your eyebrows, or you might even push them away. No one would blame you for these reactions.
People do this to me all the time, and it’s weird.
I am not a genie in a bottle; I will not be able to grant you a wish if you rub me.
And if you are trying to express ease and warmth, even sympathy, because I am in a wheelchair, well my response is plain and simple: Just don’t.
Think about it this way: If you were being interviewed for a job, would you rub the interviewer’s shoulder? No.
According to social convention, people are entitled to personal space during conversation. My experience suggests, however, this code does not apply in interactions between the disabled and the able-bodied.
And the unwanted physical contact does not stop at my shoulders.
I have conversed with people who lean on my chair, or put their foot on my wheel. It has been a reality throughout my life.
In the future, the able-bodied may think about wheelchairs in the following way: Just as your legs are a physical part of you, my wheelchair is a physical part of me.
I understand that people who touch me generally mean well, yet I can’t help but ask why an individual would deem it acceptable to touch another unless they knew them well.
While the conversations I engage in could do without the physical contact, they could use some understanding: Past discussions have become one-sided as the other person struggles to understand what I am saying due to my disability, but they almost never ask me to repeat myself.
I already know I have what I think is not a very good voice. I’ve had it all my life. But the last time I checked, saying ‘pardon me?’ or ‘what did you say?’ is not against the law.
I fear people might believe it is, though, because I never hear them say it. After I’ve struggled to articulate a sentence, they prefer to say ‘oh, yeah.’ They prefer to be polite.
In some cases, people have hung up the phone, rather than asking me to try again.
It’s obvious to me that you didn’t get the message I was trying to send; for those who pretend to understand me, you need to work on your subtlety.
Wouldn’t you want to understand what the person says, instead of pretending? The whole thing confuses me.
The fact that people speak to able-bodied individuals differently than they speak to the disabled, well it’s wrong.
In the context of the disabled, think of conversations this way: They are like gardens. With space and time, they can grow.
Alex Lytwyn, 29, is from Winnipegosis, Man. He has cerebral palsy and uses a wheelchair, but he has not felt limited by his disability. Lytwyn has written two books in the past three years, and he is a graduate of the business administration program at Assiniboine Community College,