Monday, February 27, 2006

Just a Freak Show on Wheels

This time, for some reason, it was bad.

We (corporately, as a family) have developed a fairly thick skin over the years. (although you wouldn't know it to read this blog!) We just automatically block out the stares, the comments, the rudeness as much as is humanly possible. But this time, it was too much for Twinkle.

It was a busy week night at The Big W-M; it was a nice (unseasonably warm) evening, and families are out in full force. Little kids almost always stare and point, but what probably pushed Twinks to the edge this time was that there were so many of these incidents within such a relatively short amount of time.

The fact that she is exhausted from being in pain all of the time doesn't help either; when she is worn out like this, she tends to be more emotionally sensitive as well (as most of us are) and so the ordinary annoyance becomes a HUGE disturbance.

By the time we got our shopping done, and were in the check-out line, I knew she was on fairly shaky ground.

As she rolled across the parking lot, she looked up at me with tears standing in her eyes, and asked me if she was "just a freak show on wheels".

No, Twinks, you aren't.

You are just an incredibly brave little girl trying to make it through the pain until we can get a diagnosis, and treatment.

You are smart. You are funny. You are loving and sweet and kind. You are many, many things, but you are NOT a freak show on wheels. As long as you remember that the wheelchair is only a tool - only a mechanical means to an end - you aren't the one with the problem.

Puberty is tough enough without going through it on wheels. I hate it - more than I can express here - that The Twinkie has to start through this time in her life feeling so very much more different than everyone else. Because I can look back from my lofty perch of 40+ years, I can try to tell Twinks that everything will be OK - that this is NOT the best part of your life right now (if you peaked at 12, imagine how depressing THAT would be!) and that the best is most certainly yet to come.

But at 12, I was not yet really ready to listen to everything my mother had to say. As is so often the case, I was certain that there way no way my mother could ever remember even being 12, let alone understand how *I* felt!

Boy, was I ever wrong. So now it is my job to help Twinks through this part of her life, based on our current circumstances - not on some fantasy world. Sometimes, it will suck. I won't kid you Twinks - I don't operate that way and you know it. Try, if you can, to remember that those who treat you poorly usually aren't mean - they are simply uneducated about you and your situation.

You aren't "just a freak show on wheels". You are so much more, and I hope you can remember that in the days to come.


Johnny C. said...

Man, I hated 12 and I was completely healthy. I couldn't imagine having to do it in a wheel chair.

I'm sure Twinks has more character and perseverance than I ever did at age 12.

Gang in there Twinks!! It'll get better!!

kamagurka said...

I'm not talking about the whisperers, and comment-makers, not even the unabated starers, but people will look, and they will look because of curiosity. A person in a wheelchair is not seen every day, and in addition to that most wheelchairs are shiny. That's interesting, and not in a bad way. I remember being pretty fascinated with wheelchairs, until I had a neighbour who needed one, and he was prepared to answer my questions both about the wheelchair (dude, there's some sweet technology in those) and his disability. He even loaned me one of his wheelchairs and I drove around my apartment for a couple of days instead of walking. All this was both fascinating and fun.
I don't really remember what my point was, but I usually try to approach people who are different with sincere interest, because it is absolutely thrilling to me to gain even a glimpse of insight into their unique condition. This applies to people from other countries, gays, people with body modifications and also extends to disabled people. I just hope this interest doesn't look like the freak-show fascination the starers display (to be honest, I just hope it really is a different thing. What do you think?). I also realize that this interest can be just as unnerving as the normal staring.
Remember how I said I didn't remember my point? I'll shout when I find it, but don't get your hopes up.

Anonymous said...


We typically don't mind people who are genuinely interested in why Twinks was in a wheelchair, or why she wears braces, etc.

Those people tend to politely ask the questions that they have, and (for the most part) they are pretty cool about everything.

What gets to us are those who make *assumptions* and never bother to ask us about them. Or those who act like you are stupid if you are in a wheelchair.

I think it is great that your neighbor let you try out the chair, and that you obviously have someone you can talk to about this stuff. The more we all realize that everyone is fundamentally the same, the better off the world will be.

Thanks for visiting! :)