Tuesday, March 3, 2015

Cerebral Palsy Awareness Month: Day 3: Awkward Responses to Children's Questions

I talk about my twin sister a lot around here, so you probably know I have one, and we're best friends, and we miss each other when we don't see each other for a few hours.  (Sometimes, when we are in different rooms of our apartment...)

Something I might not mention often is that she, too, has CP.  It's very mild, and causes her to walk with a limp.  She came home from work last night, loaded with Girl Scout cookies, and, as it turns out, a story about one Girl Scout and her mother, who were behind her in line.  My sis recounted the conversation to me, as close to verbatim as she could recall:

Girl Scout:  Does she have a disability?
Girl Scout's mom:  No, but she has a lot of abilities!
Girl Scout:  Well, then why does she walk funny?
Girl Scout's mom:  Because she went to the therapist and they told her to walk funny!

Now, why would anyone think this is helpful?  First of all, my sis was right there, and would have been open to answering the child's question had she been asked.  Denying disability and telling your child outlandish lies about it does nothing to educate that child.  My sis has actually been approached by a customer at work, whose child was newly diagnosed with some type of disability.  Having noticed my sister's limp, the woman apologetically asked if my sis had a disability and went on to say their child had just been diagnosed with something.  My sis was able to reassure her that her child's future was bright and she would do just fine.

Just in case the little girl scout or her mom happens upon this page, I'd like to leave a little truth behind for them.  Cerebral Palsy is a disability that effects movement and posture.  It's the result of damage to the brain that can occur from pregnancy through about age 3.  It does not get worse over time, and you can't catch it through close contact.  It is permanent, however.

As there are many different areas of the brain and many different degrees of damage sustained that can result in CP, it is possible to meet several people with it, and see several different variations of it.  For example, my sis and I are identical twins.  Our CP is not identical.  My sis walks unassisted with a minor limp, while I have always needed a walker, crutches or a wheelchair to get around, depending on my age, and the distance being covered.  Some people with CP have seizures, some of us have communication problems, some of us (like me) have trouble with depth perception.  For some of us, CP means an intellectual disability, however, CP is not synonymous with intellectual disability.

We are capable of many things, and we are disabled.  

This topic actually came up in a discussion I saw the other day: What would we want parents to tell their children who have questions about us?  And the best answer I saw was, "Let's ask them nicely and see if they'll tell us."  It's also a safe bet to assure your child that some people walk with a limp, and some don't.  Some have prostheses, or wheelchairs, or crutches, for all kinds of reasons, because everyone's body is different, and that's okay.  It's how we get around.

Lesson of the day?  Don't deny disability.  Don't lie to your child about the role of therapists or make ableist remarks about the woman in front of you.  Being curious is natural, but being ableist is learned.  So educate yourself and your child.

4 comments:

  1. Love this! I had a similar experience last year when I was walking with my friends and a little girl behind us was like, "Mommy, why is she walking like that?!!" and her mom acted all embarrassed and told her to be quiet. It was awkward for everyone, and it taught that little girl that disabilities are shameful, that they are something that need to be hidden or whispered about.

    I knew you had an identical twin but I had no idea that she also had CP! That must have been kind of nice for you growing up, to have someone who sort of knew what you were going through, even if your disabilities vary in severity. I didn't know you had depth perception issues either -- so do I! I wrote a post a while back about a depth perception experiment that we had to do in my psych class and it was a bit of a train wreck, LOL. Do you find that you ever have trouble with spatial concepts as well? I don't have any intellectual disabilities, but I've noticed that I struggle with visual perception/spatial things sometimes, and I'm wondering if that's related to the depth perception stuff.

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  2. Exactly! So harmful! And I just don't understand why a mother would make stuff up and spread misinformation like the mother did re: my sis.

    Honestly, I only ever really noticed the differences CP caused between us, not so much the similarities. My most memorable depth-perception related downfall is detailed here: http://toniasays.blogspot.com/2015/01/life-in-key-of-cerebral-p.html And yes, I had tons of issues with spatial concepts! High school geometry? No. I couldn't even use a protractor...but that was more coordination related I think. I feel like it could definitely be related...

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    1. Yeah, the misinformation in your sister's situation is especially concerning!

      Ohmygoodness, I just read the post you linked to and it seems like your CP got you into a lot of interesting situations, to say the least! I'm so glad your brother was there to rescue you. And that's interesting that you have difficulty with spatial stuff as well...I ask because I remember looking at my IQ report and I did very well except when it came to spatial concepts...and next to that section, there are a bunch of asteriks and a note that my score didn't necessarily reflect my skill level because of visual perception issues.

      I took organic chemistry last semester which involves a TON of spatial thinking and even some depth perception stuff (e.g., building, manipulating, and interpreting chemical structures with a plastic model kit). I improved on some of the spatial stuff as the semester progressed, but it was a struggle!

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  3. Ugh, I can't imagine. I excelled at most things in school but ALWAYS struggled in math. I was ahead by four and five years in reading and writing abilities but math? I was always behind by about four years according to testing. I could get it, but it just took me longer,

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