Transitioning to Life in a Wheelchair

Being in a wheelchair isn’t entirely new to me, but this is the first time I have actually had my own chair for permanent use. Previously, I have borrowed wheelchairs from airports and hotels to get around, and that alone gave me an intense glimpse into life in a wheelchair, but now that life is mine, all the time, forevermore.

I was in a wheelchair when our family went to the Dominican Republic January 2015. The day we arrived in the chaotic Punta Cana airport, it was so crowded. Live music was playing, people were dancing, birds were swooping in and out of the half indoors/half outdoors airport. It was wonderful and exhilarating, but just a little terrifying when my head was at the same level as most adult’s waists! It gave me yet another precious insight into how overwhelming life can be for children. I was desperately trying to keep track of my young son while my husband found our driver, and a random Englishman came out of the blue and, without saying a single word to me, took the brakes off my chair and MOVED me about four feet to the side, so that he and his family could pass by with their luggage! It was outrageous. He never asked me to move, just moved me himself like I was a piece of furniture (in the process making me lose my grip on my son’s hand – a real worry in a crowd).

I was so outraged that I couldn’t even speak, my first thought was finding and gripping Alex again through the crowd that was then forming between us. By the time I had him back, and the stinging, choking tears subsided enough for the rage to set in, the man and his troublesome family were long gone, never to be held accountable for his arrogant, overly entitled actions. It was a humiliating and frightening experience and if it ever happens again I will be far quicker to react and blister the ears of whoever would be foolish enough to do such a thing. Please spread the word: It is NOT appropriate to move or touch someone in a wheelchair, no more so than it would be to simply pick a standing person up and carry them away. If you need to get past someone in a wheelchair, either find another way (trust me – they’ve had to do so plenty of times, to get around in a chair), or ask them politely to allow you through, as you would with anyone.

Well, that was a year and a bit ago, and now here I am with my very own chair to use every time I leave the house – amazing. It requires a whole lot of learning, transitioning to life in a chair.

I had several reconstructive bone surgeries on my right leg between the ages of 12–16, which left me with severe arthritis by the age of 20, and my legs have never been very strong. Along with the general deterioration of my health due to the AVM in my brain and years of seizures, my leg is now in such a state where I am facing yet more reconstructive operations. I can only walk a few steps at a time, and even then, with great pain.

So! How am I finding it so far? Well yesterday my husband went out and collected the chair from the old hospital on Lexden Road, which is just over the road from us. They operate a service where you can borrow a chair for up to three months, but you can also renew borrowing the chair as many times as you need, so I will be having this chair for a good long time. (Eventually I’d really love to have an electric scooter!) My new chair was in the house for less than two minutes and my cat Dewey was on it – and I don’t blame him! The seat is really, super comfy, much much more comfortable than the poorer quality chairs I have borrowed in the past. It’s also blue, which is my favourite colour! It’s easy and smooth to propel myself around, if the ground is flat – its even quite fun! I spent about five minutes wheeling around my games room in circles, for the sheer pleasure of moving without pain. The chair comes apart and goes back together with just a few easy clicks, so it’s very easy to get in and out of the car.

Unfortunately my Victorian terraced house isn’t at all wheelchair accessible. The doorways are too narrow to allow the chair through, so within the house I am still walking (with pain, but coping).

Last night we took a spontaneous drive to Mersea – I wanted to take my new chair out for a spin and thought the seaside sounded nice. The tide was in and high, and the parking is on a slope of concrete that goes straight into the water when the tide is up that far. I very narrowly avoided losing control of the chair and rolling straight into the sea – very narrowly! Slamming on the brakes was the first thing I needed to learn how to do. Typical…

After spending some time at the sea side, we wondered around some of the few shops in that area. The charity shop was totally inaccessible to the chair, its front door being up a step, and being incredibly crowded inside. Now that I’m looking at life through the eyes of someone in a chair, I can see how very much this world is not made for those in a wheelchair. England, with its ancient buildings is especially difficult. It’s made me long for the wide aisles, sliding doors and smooth expansive floors in the stores that I grew up shopping in, in St. Louis. But. I'll adjust, and hopefully, the spaces around us will be designed in a more sensitive way from now on. A mere slope installed outside of the charity shop would have allowed me access.

While this next aspect won’t apply to everyone who needs a chair, it will to some and it does for me – and that is CLOTHES! If you’re going to spend most of your time in a wheelchair, you need to dress for sitting down, not for standing up. Some people will roll their eyes at this and say “fuck that I’ll wear what I want” – well go ahead!! Wear exactly what you want! As I will, and what I want, is to look as pretty as possible. After comparing pictures of myself in a long dress or skirt, or jeans and leggings, I have decided I look best sitting down if I am wearing a dress or skirt. So I will be buying slightly different clothes now, to reflect this change in my lifestyle. However once in a skirt, it’s also very important that it doesn’t get caught up in or under the wheels of the chair, as happened with me before, while wearing a long maxi dress. A few careful tucks, here and there, solves that.

I will also be making a small lap quilt for use while in the chair, as I can see how my legs will get very cold in the winter, which only adds to my arthritic pain.

At the moment, I am still not strong enough to propel myself up hills, and my arms get very tired after a while of going along, so I am also depending on my husband to push me when necessary, but I do prefer to be as independent as possible.

That is just about all of the reflections that I’ve made so far, but I will be writing more as I learn more! Remember – disability is something that can happen to anyone, any family. As depressing as it is true, we are all only one twist of fate away from disability. We can’t instantly make the world into a friendly place for people with disabilities, but we can do our bit to help. I have been campaigning to bring a Changing Places toilet to our town centre – if you feel passionately about this and live in or around Colchester, please write a letter to our mayor asking that this be made a priority from the council. If they were appropriately motivated they could make it happen, and we can all help by piling on (polite) public pressure. If you’ve already written, please write again. We have a new mayor. If you aren’t in Colchester and your town doesn’t have a Changing Places toilet, take it up with your local council and mayor. If your favourite shop or cafe is up a rickety set of steps in an Elizabethan building – spare a thought for all of us who can’t get in. The future is inclusive. Be the future.

It’s been blessed by a cat’s bottom

P.S. Please read my book. It’s really rather good. Support local authors. The Lemay Leveller – from St. Louis to Colchester.

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