About a week ago I read a post on one of my favorite blogs, whatdoyoudodear.com, it’s run by a woman named Mary Evelyn. She is the mother of a little boy who has spina bifida. She has some great and often surprisingly funny observations about being the parent of a disabled child.
This particular post was aptly titled; The troubling side of wheelchair perks and special treatment. It’s about how her son gets extra attention because of his disability, how he will be offered cookies at restaurants and in the store or how a friend of hers at Disneyland experienced Mickey Mouse walking past a long line of kids to greet her disabled child. As soon as I read it I knew I wanted to write about it but it took me a few days to get my head around it since it’s a subject that sparks all kinds of opposing thoughts and feelings in me.
These are the sort of things I have experienced 1000s of times in my life. They are an intricate part of growing up with a disability, everyone has a ‘special’ eye on you and you will be the first one to attract attention from adults in public. As Mary Evelyn points out it’s a treat in a world that otherwise mostly is hostile towards her son. And I’ll admit it, I have almost always eagerly accepted the perks I was given because of my disability. I have taken in all the little tokens of supposed charity, the free trinkets and rides and whatever. They have been the fun side of having to live with a disability and I have laughed with my friends when they were over the top or just plain off the wall. But I have also always had to deal with drunks, derelicts and crazy people who either felt sorry for me or just saw me as an easy prey for their tiresome tirades – and trust me, they are very difficult to get rid of. Subtle hints have to be delivered with a jackhammer and sometimes powered by a small missile.
One of the things Mary Evelyn wonders about is when is it gonna stop and what will happen to her son when it does? When is her son no longer ‘the cute little boy in the wheelchair that deserves special attention?’ How will he react when that attention is no longer there? Those are some valid questions that I will try to answer here. Of course this is all my personal perspective and it may not apply to others but at least it’s one answer.
I could easily say it never stops. In general people treat me differently than they do others. It’s only a few weeks ago when my wife’s daughter noticed how we were able to pick up way more food at the food bank than if she had gone there with her mom. I think that is very likely. People who are naturally charitable do tend to be even more charitable towards me – even after I became an adult. I remember at a charity Christmas party where people could give gifts to whomever they saw fit I was showered with literally hundreds of gifts. I had friends bring them to my house in their cars and trucks and it took me days to unwrap them all. I tried to make people stop bringing me more gifts since I felt there were others who were more deserving than me. But every individual wanted to show me that they in particular cared about me so I gave up.
Then there are the more organized perks like free or reduced admission to certain museums or national parks or greatly reduced rides on public transport but on the grand scheme of things they will never make up for the limited access I experience in my everyday life, shops, public buildings, schools etc.
I could also say the perks do become less as I get older. As a young man I could get away with many things that I just can’t do anymore. No more free cookies at the store, no more skipping the line and staying on the rides for as long as I wanted at the local amusement park, Tivoli Gardens. The little perks definitely do diminish over time but I don’t think it’s something I ever thought about growing up. It was more of a natural process, it just happened. As a teenager I remember enjoying less attention, I wanted to be like other teens and that was very difficult when I would draw special attention from adults – so of course I mostly remember how much attention I did get. But in all honesty it was certainly less than when I was a child.
I can hear some of you scream: “But you always get the good parking spaces.” That might be true sometimes. But often they are filled with people who might or might not be worthy of using them, people who have gotten a parking pass one way or another for whatever more or less dubious reason. And when they are full I need to park at the very far end of the lot to avoid someone parking next to me. I personally wish they made disabled parking spaces that were far from the entrance for those of us who just want the more room to get out and don’t mind going a little farther to get into the store – that would make sense to me, nobody would try and ‘steal’ the space then.
But it’s really not about free cookies and parking. There are bigger issues at stake here. One of the main ones is that this charity is based on the view that we as disabled people/children are seen as different from others. As Mary Evelyn points out, the impact this kind of treatment has on siblings to disabled kids can be pretty detrimental to them. I have experienced that on many, many occasions. Unfortunately this is most often overseen or directly ignored by many people as they are not able to fathom what it’s like to be the child that is not being acknowledged. Of course, I have only experienced it second hand so I will refrain from going further into it here.
What I do want to touch upon is how these seemingly charitable acts are symbolic gestures that alienates disabled people and puts our otherness on public display. We are not naturally deserving of special treatment in all situations. Sometimes it’s nice to just be a person. Yes, a person who uses a wheelchair or someone who can’t see or one that has cognitive issues. But after all we are just people, we may be outliers on some scale of normalcy but so is everyone else. I don’t know anybody who is average in all ways of being. The problem is that we have become a symbol of that difference that exists all over. We have become that symbol because we need some compensatory measures to live our lives and most of us are glad to utilize those compensatory measures when we find them.
Unfortunately these days I experience that the wheelchair perks usually are nothing more than bribes to compensate for the lack of compensatory measures.
Everything that helps disabled people gaining access to services are fine with me but it makes no sense receive an ice cream because I can’t go up the stairs with my friends at some museum (yes, that has happened.) And it makes no sense when a friend of mine experience that he can’t bring his service dog into a restaurant and after he complained about it they offered him a free meal. That’s nothing short of an insult, how do they expect him to come to the restaurant when they won’t let him bring his service dog?
These are the kinds of things that make it really hard to happily receive things because of my disability. But then again, I’m a sucker. So I will most likely take the bribe next time it is offered to me.