Do It Myself Blog – Glenda Watson Hyatt

Motivational Speaker

Redefining My Cerebral Palsy My Way

Filed under: Living with a disability — by at 3:26 pm on Friday, April 2, 2010

While writing yesterday’s post, I was going to leave it as “Perhaps the brain damage” and carry on. But then I chose to add “or brain injury” because some people now refer to cerebral palsy as a brain injury and I didn’t want to alienate or offend them by saying only brain damage – that wasn’t the point of the post.

But then it struck me in that moment. There’s a difference between damage and injury, perhaps only a slight one, but those two words do conjure up a difference in meaning, at least to me, in that moment.

Damage, for the the most part, occurs to a thing, an object, a good. Once damaged, a thing or object usually cannot be completely restored to its undamaged state. Damaged goods are typically devalued, discounted or discarded.

Whereas injury happens to living creatures; to birds, to animals, to people. Unless it’s a life-threatening injury, the person survives; perhaps not quite the same as before, but some parts or characteristics or qualities remain the same.

Defining cerebral palsy as permanent brain damage, which is always how it was explained to me and to those around me and is how I’ve seen it defined in countless sources, feels so heavy, so dooming, so damning. I began life damaged: devalued, discounted, and, by some, discarded. Where is the hope in that?

Instead, yesterday, by saying “permanent brain injury”, I felt that weight instantly lift. Yes, the injury is permanent. I’m not denying that fact. But the injury happened to parts of me; other parts of me, of my spirit, of my being remain uninjured, unharmed and intact. Those parts remain valuable and worthy.

It’s my cerebral palsy. I am the one who has to live with it every day, day in and day out. Therefore I am who gets to define it, and, today, I’m defining my cerebral palsy as a permanent brain injury. Brain damage be gone!

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25 Comments »

Comment by Katy

April 2, 2010 @ 3:38 pm

Great stuff here. Brain damage always feels so HUGE when you say it. I’ve even had doctors use the term and then sort of back out of it because it made them uncomfortable. And I’m always tempted to say, “it’s ok.”

My son has CP and I find your life very inspiring.

Comment by Janet oberholtzer

April 2, 2010 @ 4:44 pm

Excellent, wise thoughts!

I also like the word injury better than damage. I had a sister with CP and I was often frustrated with how she was treated as a ‘damaged’ person, instead as a person with a brain injury that affected her muscles. (she passed away 1.5 years ago due to health issues, not totally CP related)

I received life threatening injuries in an accident almost 6 years ago. One severe wound was to my left leg which almost resulted in an amputation. Somehow I survived and the docs were able to save my leg – though it now has a unique shape to it. (thankfully it works better than it looks) I’m still trying to figure out what to call the injured area of my left calf – because I don’t like to call it damaged or deformed, because those words are too stark. Most times I say something along the lines of – “it has a one-of-a-kind” look. Or I just tell them I got bit by a shark, cuz that’s what it looks like 🙂

Comment by Sandy Lipten

April 2, 2010 @ 5:05 pm

Glenda, I love this post! I’m so happy I discovered your blog through Pam Slim.

My favorite part: “It’s my cerebral palsy. I am the one who has to live with it every day, day in and day out. Therefore I am who gets to define it…” This is what I always try to tell people who are dismissive of language that they deride as “politically correct” — I believe that the person who has the characteristic or is part of the group being described is the one who gets to decide if any terminology for the group is offensive or not! (Wow, that was a long, tortured sentence!)

I have a family member who has schizophrenia. Her symptoms are so devastating that she doesn’t know or care about the words people use about mental illness in general or about schizophrenia in particular. But as someone who loves her and whose life is affected by her illness, I care! I am on a gentle but persistent quest to change the use of the stigmatizing words people use about mental illness. And now, I’m going to add to my quest a new mindfulness about the phrase “brain-damaged.” Thank you for sharing this.
–Sandy

Comment by John Haydon

April 2, 2010 @ 5:08 pm

Glenda – You are so powerful!

My mom has a massive brain injury due to a stroke when I was a kid. She was blind, half paralyzed and lost all of speech. She was able to almost fully recover because she owned her situation – it never owned her.

You two have a lot in common: Strength and a sense of humor.

Take care!

John

Comment by Glenda

April 2, 2010 @ 5:12 pm

Katy, thank you for your words. Isn’t amazing how one word can make such a difference?

Comment by Glenda

April 2, 2010 @ 5:17 pm

Janet, thank you. Sorry to hear about your sister. I can appreciate she was treated as a damaged person, so sad. I like your “it’s one-of-a-kind” phrase. Another option might be to name it, like that’s my Jaws. Just a thought. 😉

Comment by Glenda

April 2, 2010 @ 5:23 pm

Hi Sandy and welcome from Pam’s blog. Thanks for stopping by! I like your point that it’s not about political correctness, it’s about empowering people to determine the language used to referred to them. Thank you for being a caring person and for changing the world.

Comment by Glenda

April 2, 2010 @ 5:29 pm

John, I love that your Mom owned her situation after the stroke. That’s so empowering! And, yes, inner strength and a wicked sense of humour go a long way too! Looking forward to seeing you soon in Chicago.

Comment by Avril

April 2, 2010 @ 8:11 pm

This is wonderful, Glenda! I was just talking about language this afternoon with some friends. We were talking about politics, but the point is the same: language can be used to clarify or to obscure, to empower or to dismiss, to engage or to alienate – and our choice of words can make all the difference.

I love your distinction between damage as referring to a thing and injury as referring to a living being. I think your observation is bang on, and it will remind me to always make sure I’m using ‘living’ language to talk about living beings!

Comment by Troy Wittren

April 2, 2010 @ 8:13 pm

I have never really considered whether my cerebral palsy is “brain damage” or “brain injury”. My umbilical cord was wrapped around my neck at birth. Brain damage, brain injury — I have never considered either term as descriptive of me. I am comfortable with being disabled. I am comfortable with having cerebral palsy.

“Brain damage” or “brain injury” – I don’t like either one. But, as always, I very much appreciate your thoughts.

Comment by Cheryl

April 2, 2010 @ 8:17 pm

I’m glad I’m not the only one who spends so much time thinking about words!

Comment by karenL

April 2, 2010 @ 9:23 pm

The same thing happened to me, back in the early nineties when I was taking some college courses. I went to a seminar about gender-inclusive language. It all seemed a bit over-thought and over-blown to me.

So I said, I grew up in an all-girl family. I always understood I could do anything, and that I was included in the term “man”. So really, what’s the big whoop about our language saying “he”? I don’t get why we have to revamp a whole language over this.

And someone, patiently, politely, said to me, “Some women don’t feel included, they don’t see themselves in that language, and that’s important.”

So I shrugged my shoulders and started to use gender-neutral language in my writing.

A couple of years later, and I was thinking about going to film school at NYU. I read a book that some people who had attended wrote (an early e book … 1994!). About halfway through the book, I felt totally jazzed about applying, going, becoming an NYU filmmaker. As I read the next chapter, I realised. The whole book (written by a man and a woman) was written in the female gender! Instead of “he does this”, it was “she does this”. I realised that some of my excitement, nay most of it, and the way I could really picture myself in New York attending film school, had everything to do with my gender being written into the text.

Wow!

(I then studied Communications.)

I have never thought of you as damaged, unless you count your sense of humour and then, like mine, I would more say warped. 😉

Comment by Suzie Cheel

April 2, 2010 @ 10:23 pm

This is a great follow on and something you don’t know about me is that I had an accident when I was 16, unconscious for a week, and i could have had brain injuries- i was operated on and lost all my hair, but as my Mother used to always say- I was lucky to be alive- I believe I was so lucky to not have lost my memory and suffer no brain injury- I told this story to Toastmasters last week. Your story brought back memories of a girl that had a similar accident at the time and did suffer brain damage/injury. thanks I like what you are writing

Comment by Norman

April 3, 2010 @ 1:06 am

Hi Glenda. I’m posting this here and on your Facebook link as others may be interested too.

Have you ever seen the Visual Thesaurus? Take a look at http://www.visualthesaurus.com

In turn, type in the words “Damage” and “Injury”. Comparing the results is fascinating.

Dictionaries have persuaded us that words have a fixed meaning whereas the meaning of a word often has more to do with the cluster of associated words that surround it.

If I read you correctly, it’s these associated meanings of “damage” and “injury” that you are exploring – in much the same way I was poking at the distinction between “therapy” and “education” in a more jokey way (http://bit.ly/coo5df)

Words do matter.

Comment by Glenda

April 4, 2010 @ 12:38 am

Avril, using “living” language for the living – what a concept, eh!

Troy, I can appreciate you not liking either term. Both are rather harsh. I’m curious: how do you explain or describe your cerebral palsy?

Cheryl, perhaps thinking about words and trying on different ones is the writer in us.

Karen, isn’t being included so powerful! I remember in my Sociology 101 text, which I still have as proof, had ONE paragraph about people with disabilities in Canada! Like I felt included. So much to change, so little time!

Wow Suzie, thank you for sharing your story here! I’m so glad you survived the accident and that you are who you are today.

Thanks Norman, that visual thesaurus is intriguing. And, yes, it’s the associated meanings I was getting at; it may be semantics but some hurt while others heal.

Comment by Ricky Buchanan

April 4, 2010 @ 2:49 am

Language is so VERY powerful isn’t it!

Not having a firm diagnosis means I don’t really have any label for my disabilities and that’s incredibly hard. I have several labels that I use but none of them are fully confirmed so I feel rather like a fraud when I use them. And saying “I have an unidentified disability” feels very weird to me. So what do I say if somebody asks what’s wrong with me? Usually I just brush off the question with a joke (“Horrible tapdancing accident last week!”) but it always bothers me.

Comment by Todd Jordan

April 4, 2010 @ 2:27 pm

Love this article. Well done on taking ownership.
All of us, regardless of our circumstances should do the same.
Cheers, hugs,
Todd

Comment by Barbara

April 5, 2010 @ 5:25 am

This semantic distinction may be as important as person-first language.

Comment by Tracy Bonczyk

April 6, 2010 @ 11:15 am

You wrote: “But the injury happened to parts of me; other parts of me, of my spirit, of my being remain uninjured, unharmed and intact. Those parts remain valuable and worthy.”

I’m not sure from your wording, it appears to me that you’re saying that the uninjured parts are valuable and worthy. I wanted to add that even the parts of you that were injured are valuable and worthy. There is no part of you that should be discarded or devalued. I wish Everyone could get that.

Comment by Glenda

April 6, 2010 @ 11:29 am

Tracey, thank you for calling me on that point! You’re absolutely right.

Comment by Keith Hosey

April 9, 2010 @ 12:05 pm

Hi Glenda,
I’m a little late to the party here with comments. I absolutely LOVE this post. It is amazing the difference the words we use can have. When I was born I had a “birth defect”, I was/am broken according to the term. I struggled with that quite a bit for my first 21 years of my life. Though my parents and friends are all loving people and never saw me as “broken”, the term itself sucked the worth out of me. Finally one day I decided that I will not let a word or a condition define who I am. I had that “Aha!” moment you described. I now prefer to call it a “congenital condition” if I am to refer to the phrase formerly known as “birth defect”. Awesome post.

Comment by Glenda

April 9, 2010 @ 3:19 pm

Hey Keith,

All comers are welcomed at this party! I love your Aha moment. Isn’t amazing how many labels are placed on us, weighing us down and changing our life’s trajectory!

Comment by Peyton Stafford

May 15, 2010 @ 8:52 pm

Your distinction between the implied victims of injury and of damage is brilliant! It says it all!

Comment by Rowan Jumper

January 20, 2012 @ 10:35 am

Great, thanks for sharing this article post.Much thanks again. Really Great.

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