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.
- Published Works
- Favorite Posts
- Interview with Ellen Stumbo: Growing Up With a Disability
- Contact Me
- All About CP and Me (Free eBook)
- CP Survival Guide
- Video: How and When to Talk to Your Kids About Their Disability
- Place Blindness and CP
- Video: What You Need to Know About CP
- Disability on The Fosters