Inspiring video from adult with cerebral palsy

by Anna

It Just Takes a Little Longer

It Just Takes a Little Longer

So just when you're feeling overwhelmed with all the extra work involved in caring for someone with cerebral palsy, along comes a happy and inspiring video from the folks at United Cerebral Palsy to show you the possibilities.

It comes from Scott, a 29 year old with cerebral palsy that uses the same augmentative communication system that my son does, and it's nice to see someone using it independently like Scott does.

But what really inspired me about this video is that it shows him doing something physical - in fact, something that I can't do - and that I in fact would not have that possible for my son. Now, I wonder...

My little guy is only 13, but has the same kind of spunk and can-do spirit as Scott. And, also like Scott, I know that he can communicate wonderful, funny and insightful thoughts too. And just like Scott says,

"It just take me little longer."

Please watch the video and let me know what you think of my assessment below...

So what do you think of Scott's message?

It is inspiring right?

And yet....

Here's where I worry.

I'm all for encouraging people like Scott to be their best at whatever they want to do.

And I agree with Scott's message that pity isn't helpful, any more than the assumption that people with cerebral palsy are incapable.

And, his particular cerebral palsy symptoms allow him to do these types of physical activities.

But everyone's symptoms are different. Cerebal palsy can be quite mild in some people, and much more severe in others.

Scott clearly has advantages that aren't available to everyone with CP.

He has a communication system, for starters that allows him to express his thoughts, however slowly.

And I know from experience that it ain't cheap.
Luckily, we have a health system that covers it - but not everyone does.

Also, he has a power wheelchair - another hugely expensive item.

And, he apparently lives in a community where there is space and it is safe for him to travel alone in it.

On the other hand, I see that he uses the road, rather than the sidewalk. Is that because his community has not updated their sidewalks to safely accommodate wheelchairs?

If it hasn't, how safe will he be on the main roads?

And lastly, hugely, he has obviously had positive family / community support (and means?) to assist him during his growing years.

My worry is that people may see videos like Scott's and then possibly jump to the opposite conclusion - that an adult with cerebral palsy does NOT need assistance - that it somehow all comes down to attitude and motivation.

Yes, attitude and motivation are important, no question.

But in my mind, it also needs a solid base of the right equipment and other tools, as well as a supportive community that values them.

It is my hope that Scott's video does indeed inspire people with disabilities to keep striving, and just take the time they need to get what they want.

It is also my hope that those of us without disabilities also make note of what a difference it makes when we provide the right tools, the right environment and the community to support people with disabilities in the way that they need to be their best self.

What say you?

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Scott's Mom
by: Laura Belkner

I assure you, our family is not, nor have we ever been, wealthy. We, as a family, have struggled and persevered as any "typical" family... just with another challenge. The aug com devices he used (and still uses) were from the support of Prentke Romich, our family, and therapists in his young life. Scott was involved in early childhood development programs very early in his diagnosis and we concentrated very much on socialization. We live in a suburb of Phoenix AZ and yes we do have sidewalks, which Scott utilizes. Scott works out at the local YMCA, which in itself was a challenge. The Y was concerned that his safety was at risk and asked for doctor's releases and other documents. My response was: Do you ask ALL of your members for such documents? thus, he joined the Y! I must say that all Scott wants to communicate to those who want to listen is: Anything is possible. This is something our family has always believed. Scott has not had a sheltered or "easy" life.... nor has it been a bad life. Just a normal life!

The Special Life
by: Anna

Hi Laura! Thanks so much for responding and adding your information - it really helps to understand the bigger picture.

Your son's video is inspiring and I'm very glad he did it.

I also want to explore the idea of audience reaction a bit more too.

My inner naysayer, that I've nicknamed Yabbut, can always find something to worry about. :-)

In this case, Yabbut was influenced by the incredibly negative comments over on another site dealing with financial assistance for people with disabilities.

Shockingly, to me anyway, there is a vocal group of nasty people who seem to resent the idea that people with disabilities receive help.

The underlying theme from them seems to be "Why should I help you? Go get a job!"

You can read some of the nastiness I am referring to in the comments here:

Don't get me wrong, I absolutely believe that stories like your son's should be promoted.

I would just also love to add the proviso - "look what can be accomplished with the right support".

Like you, we're are in no way rich, but have been lucky enough to have support systems throughout that make a huge difference. Not least of which is the kind of can-do attitude that both of our sons have.

Interestingly, my son is only 13, and I though he would be inspired by watching your son's video since he uses the same communication device, and your son is older.

Here's what happened though...

Near the beginning of the video where you son comments on how people have always told him he could NOT do things, my son looked puzzled and asked WHY? He takes it for granted that of course he can do things....

But what was more interesting was his reaction to your son's comment asking people without disabilities to not feel sorry for us.

He looked a bit bewildered and taken aback - his face full of consternation. I don't think it has ever occurred to him that others feel sorry for him. I also think he found the idea of low expectations and pity from others unusual and depressing. He hasn't been exposed to that yet.

So in the end, the video ended up depressing him a bit, rather than inspiring him.

All of which surprised me and left me feeling bad.

So maybe thinking about the audience for the video and all potential reactions would help going forward.

For the right audience, your son's video is excellent, and I hope that it gets a lot of exposure.

Thanks for your comments!

The Special Life
by: Anna

Hi again Laura,

just also wanted to comment on the sidewalks...

Yup, I did figure that you have sidewalks where you live.

I do wonder though whether your municipality has also upgraded your sidewalks to make them accessible for wheelchairs.

In Toronto, many of the sidewalks have been upgraded , but there are still many gaps that make full access difficult or impossible.

For instance, right near our house is a little parkette that I love to stop by for a rest if I take my son out for a walk. (He has a heavy manual wheelchair)

However, I can't easily access it because of the curb. So I either have to try and lift the wheelchair with him in it (not fun!) or go on the road to the nearest driveway. Not safe.

That's what I mean about civic responsibility at the municipal level to create safe sidewalks for people in wheelchairs to use them safely.

Hope that clarifies..

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