Five years ago tics in my legs started affecting my mobility so much that one consultant rather upsettingly described it as being like ‘the Ministry of Silly Walks’. I struggled on for months, walking in a chaotic way, falling down every few steps, and putting myself at risk as a result. A few people, including a close friend, a stranger and a health professional, suggested I should start using a wheelchair. But many of my friends and family were sceptical. I remember Fat Sister saying, “It hasn’t got that bad yet.” I know when she looks back at that time now she feels very differently – ‘How did we let that go on for so long?’ Now she’s into wheelchairs almost as much as I am.
I know from my own experience that the decision to start using a chair can be a painful one and how other people respond makes a big difference. I’m going to hand over the rest of this post to my friend Kaira whose tics have meant that she’s recently been facing similar challenges.
Hi I’m Kaira. I was diagnosed with Tourettes syndrome when I was 13 years old – I’m 17 now. I’ve had tics for as long as I can remember – most of them are bog-standard and run-of-the-mill, such as twitching, clapping, chest thumping, screaming, racial slurs, yada, yada, yada. As you can imagine, people stare, point, laugh, insult, tell me I’m ‘attention seeking’, tell me to ‘grow up’.
I can cope with all this, although it gets on my nerves having to justify who I am (because Tourettes is part of me), but it’s all doable. It’s not like I’m dying.
But none of that is what I want to write about. I want to tell you about “The Big Tic!”
There’s a new tic in town, it literally makes me go weak at the knees and sweeps me off my feet!
Sounds good, right? Sadly there’s no accompanying chocolates or roses, instead there’s bruising and aching muscles!
As you know, tics are involuntary, so I have no control over “The Big Tic”.
“The Big Tic” doesn’t care if I’m walking up or down stairs, standing at the bus stop, at the checkout in a store, in the shower, on the street, in the corridor at college …
Nope, “The Big Tic” doesn’t care.
Imagine you’re walking down the street and suddenly you’re on your knees, you don’t know what’s happened but you know it hurts! You get up and carry on, you’re a bit shaken, but you can’t just stay on the floor! You get five paces down the street and it happens again, only this time you land on your backside. So now you’re feeling anxious, humiliated and wondering what the hell’s going on… when it happens again… and again… and again. “The Big Tic” has led you to a new way of life, a new mode of transport. “The Big Tic” has led you to The Way of The Wheelchair.
Up until this point, I’ve managed quite successfully, even if I do say so myself. I can cope with college by relying on padded gloves and Lorazepam! That’s a joke – I don’t wear gloves!
So imagine my horror when I’m told, “You shouldn’t rely on the wheelchair.”
Yes – people really say this. Or how about, “What’s she doing in that? She can still walk! She’s such an attention seeker!” Yep, they say this too.
I don’t have a lot of friends – it’s difficult for girls with Aspergers to maintain friendships, But for a girl with Aspergers and Tourettes as well it’s nigh on impossible. So I don’t have anyone to shield me from this humiliation or to watch my back, so to speak.
Sometimes in those horrible moments I’ve actually agreed with these people: “No, I won’t rely on the wheelchair” or “Yes, I’ll try to leave it at home.”
I’ve agreed because when you’re sitting in a wheelchair today when you didn’t need one last week, and you have a group of adults crowding around you who think they know best, it’s actually really intimidating.
I feel then as though I have to justify myself, maybe fall down in front of them a few times, down the stairs perhaps, just to prove my point!
I can sometimes walk all day and stand on my own two feet. At other times I walk just two paces and fall down, and go on doing this every day for weeks. If I don’t “rely” on my chair for those times, should I just stay at home? Or maybe attach pillows to my knees and backside?
I want people who make these judgements to know that YOU make me feel intimidated, less worthy, humiliated, judged.
Do you think I WANT to use a wheelchair? Do you think I WANT any more of my independence snatched away from me? Do you think I WANT to feel like a fraud every time you give me that look?
I just want to go to college, I want to walk…. I WANT TO WALK!
BUT, I also HAVE to rely on the wheelchair, or I can’t function in college, I can’t go into town, I can’t leave my house.
I don’t want or need your sympathy. I’d like you to:
• Ask me about why I need my chair,
• Not assume that when I’m in the chair I’m also now deaf and blind… I can hear your comments and I can see the looks. This hurts more than using a chair does.
• Ask me if I’d like a hand getting out the door when I’m using my chair,
• And most of all, when I get out of it, SMILE WITH ME – IT’S A GOOD THING.
Please, just be kind.
Kai’s message is incredibly powerful and goes way beyond wheelchairs and mobility. Being kind, having empathy and not making judgements about other people’s situations would make for a much happier and more inclusive world.
Like Kai the thing I found most difficult about starting to use a wheelchair was other people’s reactions. We’ve all been sold the lie – that using a wheelchair is bad. But it’s not bad, wheelchairs are tools for living and having the right chair makes me less disabled.
Thank you Kai for writing such an important and powerful post and for sharing your experience so honestly.
I don’t use a wheelchair but I do end up feeling the need to justify myself pretty often when I opt out of activities that my body can’t handle at the time, and then explain the same thing all over again when I AM able to be active. I wish I could explain it to everyone so that society can stop being so nasty, but it gets so tiresome and some people just refuse to listen. The most ridiculous it gets for me is when people tell me I shouldn’t ever go out if I can’t carry all of my own stuff all over the place, and then tell me I have to be more active. How can anyone rest more AND do more excercise?
People can be so stupid and ignorant about disability. The rule of thumb for me is that there is no rule of thumb. What works for one person works for one person, that’s it. I guess I’m one of the slightly more enlightened types, having a daughter with autism and knowing that any disabling condition affects people in a million different ways, but it really isn’t difficult to grasp.
I can understand the advice of not relying on a wheelchair if someone is rehabilitating and learning to walk, perhaps after an accident, but wheelchairs shouldn’t be seen as a negative thing. They are a tool for increased independence and freedom for people who aren’t able to manage walking all of the time. We use a spoon to eat soup, nobody questions that, so why not use the resources available to us to achieve the thing we want to do in all situations?
Thank you Kai for your insights 🙂
T Jay says:
I have the same issue, like today I had three falls and needed my wheelchair, getting in and out of it means dirty looks from passers by, just because you aren’t paralysed doesn’t stop you needing a wheelchair from time to time