Cerebral palsy affects my speech, but it’s worth the effort to hear me out

Posted on July 28, 2024 by Peggy

This First Person article is the experience of Alex Lytwyn, who lives with cerebral palsy and is a disability advocate, writer and small business owner of Willpower Media. For more information about CBC’s First Person stories, please see this FAQ.

Those of you who know me well know that I advocate strongly for many causes.

When everything goes smoothly, my voice and thoughts flow, my breathing is in tune, my nose is clear and I am understood.

I must make sure that my image is at its best at all times. If my pants or hat are not straight, or my wheelchair’s seatbelt or foot straps are showing, the battle to keep my disability from completely taking over is that much more difficult.

But there are plenty of days when nothing goes according to plan and I am not understood. When this takes place, I ask that you have some patience. I’ll repeat myself, spell it out, or find some other way to get my words out.

I am OK, just trying to get my words out to the best of my ability.

A man with short brown hair and glasses, wearing a black shirt and tan pants, sits in a wheelchair and looks into the camera. — Disability advocate Alex Lytwyn has spent years being a voice for others. ‘When everything goes smoothly, my thoughts and voice flow,’ he writes. When that doesn’t happen, ‘I ask that you have some patience.’ (Jaison Empson/CBC)

Holding my head straight is an aspect of my life that I really must work on. If my head is crooked, my cerebral palsy takes over the conversation and my appearance is seen negatively.

Also, sometimes stuff comes out of my mouth and onto my chin. Out of everything that I deal with, this bothers me most. I am the only one that can deal with this issue. Having stuff on my face can really hold me back from society seeing the true me.

Trying not to say 50 words in one breath is very important. If I do not talk in a measured, calm tone, the words coming out of my mouth are nothing more than noise and wind. I have to breathe slowly and just let everything flow. Sitting up straight and keeping my hands down is key to clear speech.

With me putting weight on very easily, it is a must that I stay in shape best I can. If I don’t, it makes it harder to breathe, and this really affects my speech. A lot of energy and effort is needed for me to get my point across. If I am heavier, I get tired that much faster.

Speaking — and furthermore, speaking well — can drain me both physically and mentally.

Whatever you do, don’t ask the person with me, ‘What did he say?’– Alex Lytwyn

The worst thing a person can do is give me that fake smile and pretend to know what I am saying. It’s always an awkward situation, when I am having a virtual or an in-person conversation. I finish a sentence and the other person does not say anything because they have not understood what I have said and do not know that my point is complete.

Why not just ask me to please repeat myself? It’s a lot better than silence, a stare and a smile to go along with a head nod. And whatever you do, don’t ask the person with me, “What did he say?”

Close up of a man with short brown hair and glasses, wearing a black shirt, staring into the camera. — ‘A lot of energy and effort is needed for me to get my point across,’ writes Lytwyn, but ‘it’s my hope that one day my words and thoughts will lead to me living a much more normal life.’ (Jaison Empson/CBC)

Speaking is not as easy as it used to be — the main factor being that, due to my lack of full-time care, I cannot have a drink, snack or a soothing candy whenever I want. When I have one of these three things, my voice is clear and strong.

My passion for speaking and opening society’s eyes has only grown stronger. It is all worth it because over the years, my ideas and voice are starting to get recognized and appreciated.

It’s my hope that one day my words and thoughts will lead to me living a much more normal life.