'We don't want to be held on leashes'

By Jadine Baldwin

As a 17-year-old girl who has cerebral palsy, every day I encounter teens with a variety of abilities and disabilities. The Limited versus the Limitless!

Society tells people like me that we’re limited because of our disabilities—mental or physical—and that because of what we’re lacking, we’ll never be able to live a full life. This can be disheartening for parents and guardians to talk about and process with their disabled children. For this reason, parents are afraid and unsure about how to support us when we become teens and even adults. They’re scared to let us “be free,” because all along they’ve been told to keep us close, or the world will eat us alive.

Parents don’t understand that just because we’re made differently from “normal” teens, doesn’t mean that we don’t want to experience life like normal teens. We want to go to the movies with our friends alone, we want to stay home alone, and we want to try the things we're constantly told we can’t do. We don’t want to be held on leashes. It doesn’t matter if we’re verbal or non-verbal, we can understand what it means to live a good, quality life.

We just need our parents and the ones we love to help us along the way.

I have a very close friend who’s my age and autistic. He’s super smart and funny and I feel so alive when he's in the picture. He and I have known each other since Grade 9. He understands me, and I understand him (like no one else does, as he says). Even though his parents have known him for 17 years, he tells me that it still feels as if they’re “newbies” sometimes. They know that he needs a simple and easy-to-understand structure in order to grasp this complicated world. Yet they still confuse him by putting too many minor details into a task or question, and that throws him off.

Sometimes, people don’t realize that simple is how everything begins. Simple love, simple feelings and then you gradually can start to think deeper. My friend’s parents are smart, my only advice to them is: Give your son a simple tree and he can make it grow into extraordinary things, all on his own. Just give him time and your support to let him know that you're ready to see the world through his eyes.

“I want to talk to you, Daddy...but the words won’t come.” That’s what it feels like to be a non-verbal child. Because they can’t voice their own opinion, you guys as parents have to speak for them. I’ve met so many parents with non-verbal children and they treat their kids so well—like actual human beings—not robots.

Although it’s great that you’re treating your child like a human being, I find it a little silly that in trying to make your child seem more than what society sees them as, you, in turn, make them feel less by focusing too much on society and not on them.

It’s hard to speak for your child if you don’t know how to stop talking and listen to them, instead. Parents, your children need to know that you are hearing them as much as you are fighting for them. Just listen!

For parents of children who don’t have a reliable communication aid, talk to other parents, and see what worked for their child, to give you motivation and inspiration. Don’t give up.

Being a child with cerebral palsy is great—if you don’t have parents that smother you! My Mom does exactly that! I bet every teen who has CP has experienced this in one way or another. Our parents think that we're little and can’t handle the “big” because that’s what many doctors have told them. So, they don’t leave you home alone for more than five minutes (especially if you’re in a wheelchair).

Some parents won’t let you go to sleep-away camps with other disabled kids until you’re 17 (my Mom)! They always think that people are out to get you. We love them more than life itself, but it gets so crazy sometimes. I always think, Mom, my friends are not murderers and if they were, I’d be dead already.

In my opinion, our parents forget how tough we are because sometimes we don’t look it. If your child has CP, please do not smother. Please don’t tell us that we can’t handle life, because we were built for it. Please let us live (a little more).

Dear parents of disabled teens: We appreciate you and love you! We aren’t telling you that you can’t worry about us. You’re supposed to. We’re simply saying that you need to support us with what our futures hold, not hold us back. We need to soar, but that doesn’t mean that we won’t come back home. We may need help along the way, but we need to explore. That’s what life is meant for, isn’t it?

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Disabled teens crave risk, speed, freedom: Study

By Louise Kinross

Many teens love to defy authority, speed and do other dangerous things.

A new Holland Bloorview study finds that youth with the most complex disabilities are no different.

The study—published in the Sociology of Health & Illness this month—found that youth with multiple disabilities want to experience freedom, speed, risk and time alone.

For example, one young man said the safety belt on his wheelchair didn’t fit with his spontaneous personality. “My whole life, I’ve been wearing this thing,” he told researchers. “I’m the kind of person that would take risks. I don’t want to just live my life as a boring person—seeing everyone do awesome stuff and me doing nothing.” His idea of fun was being pulled in the trailer of an ATV “because they were letting me go free.”

These activities are “not necessarily what we would prioritize in rehabilitation,” says lead scientist Barbara Gibson, who is a physiotherapist.

The study looked at how settings shape what we do—with the understanding that spaces aren’t static, empty containers, but fluid arrangements of people, furniture, technologies and social expectations that can enable or restrict what happens in them.

Participants included two groups rarely studied: those who require 24-7 medical care and may use ventilators and those who have little to no speech.

Youth were observed doing two activities they chose in the home or community. During the first activity they were taught to use a camera to photograph their experiences. In the second activity, a research assistant observed and discussed the activity with them as it was videotaped it. Participants also participated in face-to-face and electronic interviews. Nineteen young people aged 14 to 23 took part.

All participants said doing practical or fun things outside their home was much more challenging than inside—because people outside the family didn’t know how to help with medical or personal needs or weren’t willing to slow down to communicate with them. Activities at home were easier and more enjoyable because of connections with family members who got into a rhythm of facilitating them.

The wheelchair was seen as something freeing—for example, allowing a participant to go to the park alone—but also constricting, because of how the safety strap suggested the user was at risk or somehow lacking.

Because many activities for the youth relied on constant support from a parent, breaks from this connection—for example, when a personal support worker, friend or family member came by to visit or go out with the participant—was interpreted as freeing.

Rather than valuing independence over interdependence, the researchers suggest rehab clinicians look at how human connections in specific spaces enable positive activities and experiences. “…At times facilitating a dependency may be a more fruitful rehab goal than enabling independence,” they write.

For example, they note that while using a voice device will give a young person a higher rehab score in “independent communication,” many participants communicate much more efficiently and less laboriously through a parent or family member.

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