Step 1: Creating a Positive Self-Image
Self-image and identity is a difficult topic to tackle. For many of us as kids, the older we got, the more we began to struggle with our body image and trying to define who and what we represented. Adding a disability to the mix can be especially challenging. Disability has a direct relationship to a person’s self-image. The words we say, clothes we wear, and type of mobility or assistive device some of us use, among other things, all affect our self-image. So first, let’s talk about the words we say.
A child with disability needs to identify him or herself as a person FIRST! I cringe every time I hear children say they are wheelchair-bound or refer to themselves by their disability. But let’s be honest; kids raised with a disability are probably used to having their disability talked about all the time. Parents have to talk to their doctors and therapists, their teachers, and their friends' parents. The list goes on and on. How they hear themselves being referred to in those circumstances can make a huge difference. Are they referred to more often by their disability than their name? When a parent describes their child to someone else, does the disability top the list, or do they list the fun and unique characteristics, like creative, athletic, or artistic, that make their child who they are? The more they hear it, the more they will believe that that is who they are. So if all they ever hear is the negative, or their disability referred to as a negative, they will start to limit themselves to those attributes alone.
There are two models of disability: medical and social. The medical model sees disability as something to be fixed or cured. The disability itself is a problem to solve. On the other hand, the social model of disability states that the problem with disability is society. The hindrance is that programs and places are inaccessible; the problem is not the disability itself. I tend to accept the social model of disability. This change in perspective can have a substantial impact on your child’s life. Their identity doesn’t have to be solely wrapped around their disability, and it certainly doesn’t have to be a negative thing. Ideally, there should be a better balance between wanting to find a cure and accepting the life you have while learning to live it to the fullest.
The older your child gets, the more important their identity becomes. As pre-teens and teenagers, the clothes they wear can come to define them. The athlete, the hipster, or the gothic can all be assumed with just a simple glance at what they are wearing. But often as a teen with disability they get left out of this rite of passage. There are no parental disagreements about the length of their shorts, or late night calls with their “bestie” to decide what to wear to the football game on Friday night. Perhaps the cool clothes don’t fit because they still have to shop in the kids section, or they can’t wear the short shorts because someone might see their diaper or other urinary devices, or any of a plethora of other reasons. It’s these little things that parents might not even think about, or may even consider a blessing that unnecessarily starts to set their child apart or define their child as different or “uncool.”
The same can be said of their mobility device. There are definitely both cool and uncool wheelchairs. Unfortunately, what might have been cool when they were seven is no longer cool now that they are 14, yet they may still have the same chair. As much as possible, try and think about their clothes and mobility devices as equal parts function and fashion. At certain ages, the functions of certain things are necessities, like elastic waistbands and anti-tip wheels in the back of their wheelchair, but these are things that could change as they age. Eventually, the anti-tip wheels can probably come off, and the elastic waist bands, while certainly more comfortable, should probably be handed over to Goodwill. Helping your child dress age-appropriately could go a long way in helping them learn to find their self-identity.