About 6 years ago, I attended The Arc of Texas Inclusion Works Conference. During one of the sessions, we talked about labels and how we describe our children to others.
In the past, when I told people about my son, or described him to others, I typically mentioned he had cerebral palsy. Not because this defined him, but because I thought it would help answer questions about him when they saw he couldn’t walk, talk, or do things like typical kids his age. I tended to focus on the things he couldn’t do when talking about him.
After that session, I really had to do some soul searching. I realized the biggest reason I mentioned his disability was because of my own insecurities. I felt like if I told people up front he had cerebral palsy, we could avoid any embarrassing situations. If I told people he had cerebral palsy, I didn’t have to explain why he didn’t verbally respond to their greeting.
If I told people he had cerebral palsy, I didn’t have to step out of my comfort zone. However, if I used cerebral palsy as a basic introduction, I was skipping over the fact that he is the most wonderful and amazing and cheerful little boy that I have ever met.
We then moved to the word “special.”
Until that point, there had always been a little part of me that cringed when I said my son had “special needs.” I'd never really been able to describe why, but "special" just seemed kind of belittling. During this session at the Arc conference, the speaker explained that “special needs” basically invokes pity. A light bulb went off at that moment.
Looking back, it seemed almost every time I told someone my son had special needs, I got a response of, "I'm sorry." Or, "God gave him to you because you're the perfect mom." Or, "You're so strong." Or, "It takes a special person to raise a child with special needs." Or the best yet: "I could never do that." Never do what?? Raise your own child to the best of your ability? Really???
But it's in those statements that I knew what people were really saying, "Glad it's you and not me." Along with all those comments came the sad look, the look of pity.
So really, what's so special about being "special?" I don't want to be special. I don't want to be an outsider. I don't want to be looked at differently. I don't want to be put up on a pedestal.
And I sure as heck don't want anyone to view my son Wade as "special." He has a disability. That's it. His life looks different, but it’s nothing to pity. Like the speaker said, being "special" at age 20 just isn't as cute as it is at age 2.
Since that day, I have replaced the words “special needs” with “disability.” It’s amazing the different response I get. It's moved from pity to “Oh, okay.”
Words can be very powerful. Not only has my language changed how other people view us; it has also changed how I view our life. Gone is the idea that having a disability is sad; it’s just different.
Here is more helpful information on resources and parenting children with disabilities.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.