Seeing the Person before the Disability

In the disability world you may have noticed a big campaign going on for the past couple of years.  (At least that's how long I've been aware of it.)   The campaign is called "People First."  It's to remind you that people with disabilities are just people.

Do you wear contacts or glasses?  Did you know that you have a disability?  You do.  It's just that wearing glasses is so common it's become normal.  Nobody considers someone whose eyesight is failing to be disabled.  It's a disability that even has a cure, now - lasik.

The problem is that the general public is a lot less comfortable with the less common disabilities.  Wearing glasses makes you look smarter.  Glasses add to your attractiveness and desirability, at least that's what producers of eyewear would have you believe.  Sitting in a wheelchair doesn't work that way, does it?

If you have kids with disabilities, you have a front row seat to their lives.  You probably don't have any problem knowing the person before the disability.  If you don't have kids with any kind of disabilities, however, it's harder.  It takes an enormously open mind to see the person, rather than the person-in-a-wheelchair or the person-who-can't-talk-normally or the person-missing-a-limb.  Without experience with these people - without having opportunities to get to know the people who live with disabilities - it's next to impossible to have that enormously open mind.

It's easier if you knew the person before he or she had a disability.  If it's something they weren't born with.

Remember Jack Jablonski?  I wrote about him before, here.  He's the local teen who was paralyzed during a high school hockey game.  He has received so much love and support.  It's easy to see Jack, and not the disability because he was a nondisabled person, first.

I met a girl named Marrie last year.  Her name is pronounced Mary.  Here's a short video of Marrie testifying at the Minnesota State Capitol.

She has a twin sister named Carrie, and Marrie was born with cerebral palsy.  I got to know her last year at Partners in Policymaking, and I got to see the person behind the body that doesn't work quite right.  I've never experienced Marrie-without-the-disability, but I can see past it now, because I got to know her.

I know, I've harped on this subject before.  The recent death of Roger Ebert got me thinking about it again, though.  Roger Ebert was disabled.  Most of us don't think of him that way, because we knew him before he had a disability.  He was a person-without-a-disability first. 




Cancer took away a lot of his face and his ability to talk, but thanks to modern technology, he still had the ability to communicate.

In this video, Roger explains with heartbreaking personalization why society is so uncomfortable with living, working, and playing alongside people with disabilities:

"It is human nature to look at someone like me and assume I have lost some of my marbles.  People talk loudly and slowly to me.  Sometimes they assume I am deaf.  There are people who don't want to make eye contact.

It is human nature to look away from illness.  We don't enjoy a reminder of our own fragile mortality."

"We are all just one banana peel away from joining the disability movement."
(I heard this for the first time at Partners in Policymaking, but if you Google this phrase, you'll find it attributed to several different people.)

 

When you hear about battles for legislation to help people with disabilities, think about Roger Ebert. Think about Marrie and Jack.  And watch your step, literally and metaphorically.

Deep thoughts about Jack, and people with disabilities

I've been thinking a lot about Jack Jablonski this week.  He's the high school hockey player here in Minnesota who was injured during a game, and will live the rest of his life as a paraplegic.  His story is just so tragic.

I think it's his parents, though, who I am most sad for.  It's his parents I can relate to.  I relate to the grief over losing the child you thought you were raising, and coping with the prospect of raising a child you never imagined you'd have, and doing it all instantly because there isn't time to go to bed and cry when you are a parent.

I am thinking that Jack is going to be a great example of something, though.  He doesn't know it yet and neither do his parents.  But it's so easy to look at a child with a disability he or she was born with, and only see the disability.  If all you've ever known is the child with autism, or the child with Down Syndrome, or the child with cerebral palsy who is in a wheelchair, right from the get-go you make assumptions about what that child is going to be able to accomplish in life.  Or not accomplish.  Before you have a chance to get to know that child, you already know he or she is saddled with a diagnosis, a label, that will change how everyone perceives him or her.  How that child perceives him or herself.

When you hear that a friend's child was diagnosed with autism, immediately you have ideas in your head of what that child is like.  Right?  I know I do.

I think, though, people are a lot less likely to make those assumptions when someone's disability occurs mid-life, to someone who was born entirely typical, able-bodied and able-minded.

Is Jack any less valuable a person, now that he won't have the use of his legs?  Of course not.

Is he less smart?  Is he less important?  Is he less HUMAN?

Of course not.

Shouldn't it be that way, for every person with a disability?

No matter how they came about it?

Let's all think on that for awhile.

 I read once that with innovations in protective head and body gear, in the last few years soldiers being injured in Iraq and/or Afghanistan or elsewhere are much more likely to survive their injuries, and come back home with a disability. This means we have more disabled vets than ever before.

It would stand to reason that this would hold true with people injured in other ways, as well.  Medical advancements are saving lives every day, but not necessarily returning them to "normal." Which means there must be more people in general living with disabilities today than there have ever been.

This is good news - saving lives is good news!

Now we need to stop allowing people who have a disability to be discriminated against.

We need to stop assuming we know what a person has to offer, based on a word, a phrase, a medical term, or our first overall impression.

“I know of nobody who is purely autistic, or purely neurotypical. Even God has some autistic moments, which is why the planets spin.”
— Jerry Newport (Your Life is Not a Label: A Guide to Living Fully with Autism and Asperger’s Syndrome)

“In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.”
— Temple Grandin (Thinking in Pictures, Expanded Edition: My Life with Autism)

We need to stop seeing people with disablities, and start seeing people with abilities that might not be so obvious.