It all started on Tuesday when I went to the Market to do some shopping. As I was making my way out again, a busload of tourists was disembarking and several of them seem to find it difficult to remember what their mothers had told them about staring at the unfortunate. Apparently where they came from, there's no such thing as free range wheelchair users. So naturally, I tweeted it when I got home.
And while I am on the topic of Twitter, let me take a moment to confirm what we all expected would happen given my slightly obsessive tendencies. I’m addicted. Last week, I twice wanted to tweet in public. Felt vaguely dirty. May need an intervention before I buy a smart phone and start tweeting every minute of the day.
Anyway! So I tweeted the experience and Lisa tweeted back asking me the following question: "how do you feel abt ads which use wheelchair image as the scary outcome to get pts to change disease-mod drugs?". And probably also not surprisingly, I was incapable of answering that in 140 characters, but it did give me the topic for today's post. And as the title indicates, I'm of two minds.
On the one hand, I am sick unto death of being held out as the worst case scenario. This one's all tied up in the stigma of disability, in us being defined as Other, the ones that people can look at - or stare at - and be grateful that they are not one of us. We are the worst that can happen, we are the freaks, we are the nightmare and quite frankly, it's a bit of a barrier to normal social interaction if one of the parties is busy being completely freaked out about the other. It is why people still insist on using the loathsome terms confined to a wheelchair and wheelchair-bound, neither of which are true. It liberates me – without it, I’d be confined to bed. The chair does not bind me, it frees me, enables me to live my life.
I've spoken to several people whose doctors recommended a wheelchair or scooter and tried to help them through the instinctive flailing, reflexive putting all four paws in the ground calming yelling nonononono. Because starting to use a wheelchair is giving up, letting go of hope, giving in, stopping the fight. But I see it as a tool, one that saves you energy, one that frees you to move beyond the immediate neighborhood because now you are no longer restrained by how far (or un-far) you can walk. Instead of using the energy to walk, you will now have energy left over to do other things that you didn't before because you were too tired and in too much pain. And I have seen people get their chair, go outside and rarely be home again after that because they were too busy living.
And on the other hand, I am in a very big sense the worst case scenario. Twice, I have that doctors tell me that if I got RA today, I wouldn't end up in a wheelchair and it's thanks to advances in disease modifying drugs, thanks to the Biologics that these days, the vast majority of people who get RA will not need a wheelchair. And I’m happy about that, because that should be the goal. The goal should be to prevent the damage to joints that will require modifications in the way you move around. Because of course, if I'd had the option, I wouldn't choose the seated life. I would choose more ability, the freedom that comes with walking - or, more specifically, the freedom that comes with your disease being managed so well that you never get to the point where walking is so difficult that it significantly impact your life.
However, the seated life was chosen for me and from this perspective, it really isn't the worst case scenario.