Partnership - aims and challenges
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Why Using a Wheelchair Is the Opposite of Giving Up
When your child is first diagnosed with a disability, I imagine it’s 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’s 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 people with disabilities 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 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’m 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 OK. 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, something that’s 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 child with a disability, everything in our culture tells you the wheelchair is The Enemy. Even well-meaning doctors and therapists tend to talk about it in terms of “confinement” and, even though it’s fairly obvious I’m 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’re taught to be afraid of the wheelchair, and that’s not your fault.
Everywhere we look in society, we’re 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’ve had a wheelchair all of my life, and it’s done anything but confine me. It’s my freedom to move and to determine where I’m going next. It’s allowed me to zip around a college campus on my own, to go shopping, to go to museums and to decide where I’d 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 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 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’s given me a chance to move along in the world, something 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’m not confined. When I ride in it, I’m 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’ve simply given them a different way to get around. Walking isn’t bad either. I still use my walker for short periods of exercise, and I’m 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. I don’t 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 work — rather than spending every last ounce of my energy simply trying 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’ve allowed themselves to overlook your beauty.
Ask yourself: Who is truly “bound?”
The answer will not be you.
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