This piece was originally written in March 2015. I am re-posting it here as I am doing with all posts not on my personal blog, but featured by The Mighty. I can no longer allow my work to be used by The Mighty in light of the site's increasing disregard for the voices of disabled writers and its consistent publishing of pieces that violate the privacy of disabled people. I join the community of disabled and non-disabled people who will not tolerate this anymore. This piece, however, was also featured on the blog What Do You Do Dear? last spring by my friend Mary Evelyn. Mary Evelyn and her family are awesome, and by all means, visit her blog if you want some good reading material. Thanks Mary Evelyn for being a great ally.
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 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 disabled child, everything in our culture tells us 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 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 yours rides in a wheelchair means he or she is “different” in a real, concrete way, no longer in one that is 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. It 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 will 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. 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 them. I can use my hands without the fear of falling and I can go places on my own, whereas if I were on my walker, I would need constant supervision. I don't have to feel exhausted all the time and I can use my energy to go to school, to spend time with my friends, and someday, to work rather than spend every last ounce of it to appear 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 only ones will live in confinement, because they have allowed themselves to overlook your beauty. Ask yourself who is truly “bound,” and the answer will not be you.
Image: Me as a toddler in a ridiculous outfit on my purple walker. I am wearing sunglasses, a hat, a bowtie, teal shorts, a striped shirt and black shoes.
Image: Me and my sister as toddlers. She is hugging me as I sit in a teal stroller, smiling.
Image: Me as a young adult in my power wheelchair, posing beside a statue of Franklin Roosevelt in a wheelchair.
Thanks for sharing such wonderful writing. I relly appreciate reading your blogs!ReplyDelete