I am so terribly excited to share this post with you today. If your child has a disability, if they may someday need a wheelchair, this is for you. If your child does not use a wheelchair but knows someone who does, this is for you, too.
I first read Kathleen Downes’ blog last summer when THIS post popped up on my newsfeed. I remember standing in my kitchen saying, “Oh my gosh– YES!” over and over again before shoving my computer screen in front of my husband’s face and forcing him to read her words too. I’ve been following Kathleen’s blog ever since. This girl knows what’s up. She writes with grace and humor about her experiences as a disabled adult, she shares perspectives that I believe parents (and therapists) need to hear, and she’s definitely influenced the way I think about disability in my son’s life. I recommend you add her to your reading list like, NOW.
When your child is first diagnosed with a disability, I imagine it’s very confusing. There are lots of signs and arrows. Lots of opinions. Lots of doctors. Lots of gadgets. Lots of people who think they know the next “right thing”. And somewhere in there, you’re trying to do the right thing. It is certainly not a perfect science and navigating can seem maze-like, impossible. But one of the easiest and best things you can do for your child is talk to other disabled people who have been living this way for years. They, not the doctors, are the real experts and know not only the challenges but also the joys of living with a disability. With them come not only a trove of advice and resources but also a community that I think is pretty dang cool. When you realize that, it all gets a lot less scary, because if there are many signs and arrows, at least it is more fun when you have people to follow them with you… and laugh with you when you make a wrong turn or forget the meaning of one of the hundreds of acronyms that become part of your life with a disability. I am a 22- year-old with cerebral palsy and one of my favorite things to do is to show those parents– who are confused, scared, and lost in the face of this new diagnosis– that they will be okay. That I live a good life in spite of and because of my disability. Their children will too, if given the chance.
A lot of you are probably wondering what things in my life have given me opportunities and enabled me to thrive. My answer may surprise you. One of the best things in my life, one that has allowed me to experience the world fully with a disability, is my wheelchair. Yep. You read that right. In the early days of being a parent of a disabled child, everything in our culture tells you that the wheelchair is The Enemy. Even well-meaning doctors and therapists tend to talk about it in terms of “confinement” and, even though it is fairly obvious that I am not tied to my seat, the term “wheelchair-bound” is still very much in fashion (usually paired with a stick figure in a wheelchair designed to look mildly to moderately unhappy). You are taught to be afraid of the wheelchair and that is not your fault.
Everywhere we look in society, we are bombarded with images of wheelchairs as things that hold people back. Your fears are just a product of what you’ve been told. Well, I’m telling you to forget what you’ve been told. I have had a wheelchair for all of my life and it has done anything but confine me. It is my freedom to move and to determine where I am going next. It has allowed me to zip around a college campus on my own, to go shopping, to go to museums, and to decide where I would like to be rather than let someone else decide for me.
Seeing a wheelchair as mobility and freedom instead of a loss takes a little time for some people. The transition from a stroller to a wheelchair or from walking to a wheelchair is one of the first formal acknowledgments that your child is “different.” Most little kids ride in strollers or walk beside their parents. The day your child rides in a wheelchair is the day that he or she is “different” in a real, concrete way. Their difference is no longer hazy or hypothetical. But embracing the wheelchair as part of life, as something that is treated like legs instead of The Monster, is one of the best things you can ever do. Please don’t be afraid of something that has given me a chance to move along in the world and something that is so infused with the essence of my being. I don’t know a life without it and my alternative, given my weak muscles, would be not moving at all. My chair is covered with buttons featuring snarky phrases, fun fur, pipe cleaners from camp crafts, and trinkets from various summer trips. When I ride in it, I am not confined. When I ride in it, I am free. Free, and rolling forward.
In the beginning, well-meaning practitioners might talk as though walking is The Golden Ticket. The ultimate prize. The mark of “overcoming.” Some of them will even pressure you to make your kid walk and stand at all costs because, in their eyes, the wheelchair is defeat. But steps do not make one a whole person. The ability to stand and walk is not a mark of character and if your child does need a wheelchair, you have not failed. You have simply given them a different way to get around. Walking is nothing bad either. I still use my walker for short periods of exercise and I am glad I have the option to stand sometimes. The point of this post is not to vilify walking or imply that exercise is unimportant, but rather to take away some of the shame and implied “giving up” associated with wheelchairs.
Just because I sat down doesn’t mean I gave up.
My wheelchair has given me the option to do things I never could on my walker. I can cruise around campus without worrying about getting knocked over or losing my balance. I can keep up with people and stay beside them rather than lagging behind. I can use my hands without the fear of falling and I can go places on my own. If I were on my walker, I would need constant supervision. I don’t have to feel exhausted all the time. I can use my energy to go to school, spend time with my friends, and to work– rather than spending every last ounce of my energy simply to be upright. That doesn’t sound confining to me.
So, please don’t be sad about your child’s wheelchair. Be happy that he or she has a way to get around. Get excited about helping him or her pick the color and don’t be afraid. Because there are spokes to be decorated, buttons to be purchased, and a kid ready to be set free. Help your children to be proud and to understand that wheelchairs are nothing to “overcome.”
Attitudes, prejudice, and assumptions that deny them equality are the real barriers to overcome.
To my fellow “wheelies,” destined to enjoy the seated view: Riding in a wheelchair six inches below the average eye level will not be easy. There are days when people will judge you or even think they know the value of your life based on what they believe a wheelchair represents. But none of that matters as long as you know the truth. Those people are the ones who live in confinement because they have allowed themselves to overlook your beauty.
Ask yourself: Who is truly “bound?”
The answer will not be you.
Kathleen writes at The Squeaky Wheelchair.
If your child uses a wheelchair, was the transition from stroller to chair (or being carried to chair) difficult for you as a parent? Even in the Spina Bifida world, I often hear adults talk about children “beating the odds and never giving up” because they don’t use a wheelchair– sometimes that’s hard for me as the mother of a wheelie kid. Do you think seeing the wheelchair as a sign of “defeat” or “giving up” affects how we view people who use them? Isn’t Kathleen the bomb dot com?