Why my wheelchair is a part of my body, and what this means for you.
When I was young I would say that my relationship with my wheelchair was akin to that of a turtle and her shell. I stand by this analogy. To me, my wheelchair is most literally a part of my body. It enables me, supports me, and if you take it away I will be unable to live.
My disability means that I need a lot of structural support to be able to sit up; I cannot hold my head or spine up by myself. I have a specially designed seating system which is moulded to my body shape. Any wheelchair user who uses a moulded seat can tell you what a painstaking process it is to get it right upon creation. I have to sit in a huge beanbag for about two hours while a man moves my body around like I’m a rag doll.
A few months later, I can try my new chair for the first time, and hopefully it feels great. But then I need to get the armrests in the right place so that I can eat and drink, and the headrest in the right place so that I can breathe properly, and the footrest in the right place so that I don’t get pressure sores.
The point is, that this wheelchair is my baby.
It’s my creation.
I have put time and energy into every minute detail. To you it might just be a chair, to me, it’s a precious, irreplaceable piece of art.
It’s a part of me.
The relationship that I have with my wheelchair is most obvious when it disappears. Breakdown is a major concern for most wheelchair users and it happens more often than I would like; I have found myself stuck halfway down a country lane, on the Thames riverbank, and in the middle of dance floors. When my wheelchair suddenly stops working, I can’t move and I am at the mercy of other people.
Recently, my motor broke and I was forced to stay in bed for three days while a new part was sourced. My wheelchair really is a part of my body; I spend every minute of every day in it, and when it breaks, I am stripped of my independence and my autonomy.
And, just like a typical non-disabled body, my wheelchair allows me to do so many things. I can rise up to talk to people at bars. I can tilt backwards when I’m at the dentist or the hairdresser. I can spin and dance with my friends. And I can fall over (this has happened too many times, leading to too many broken legs).
The characteristics of my wheelchair, the way it moves and the things it allows me to do, are indicative of something alive and human, not a lifeless object.
The important question then becomes, what does this mean for you and me?
Firstly, it means that you need to treat touching my wheelchair like touching a part of a human body. We all understand that touching a person’s body without consent can be deemed physical assault and battery, and so the same level of significance should apply to mobility aids.
My wheelchair is not a piece of furniture for you to lean on without my consent; the amount of times that my wheelchair is used as a shelf or a coat hook without my say-so is infuriating.
And my controller is absolutely not a device for you to play with without my consent, no matter how drunk you are.
A lot of manual wheelchair users face the problem of people, often strangers, grabbing their handles and beginning to push them without their consent. This has led to disabled people creating devices, such as a handle cover with metal spikes protruding, to prevent others from touching or pushing their wheelchair without their consent. Luckily for me, my wheelchair is too heavy to be pushed. However, in years gone by, one classic tactic of school bullies was to grab my wheelchair handles and shake me like an earthquake.
You can see how I might associate grabbing my wheelchair with extremely negative experiences.
Secondly, and in the same vein, you need to be cognizant of my wheelchair. It is very important for the people around me to be aware of my presence and how I move.
Society sees non-disabled bodies as tangible points and generally affords them this thing we call ‘personal space’.
On the contrary, as a wheelchair user I am often not seen and I am not given space. People will fall into me or block my path, friends and family will lean over me but knock my controller as they do so. You must be aware that you are bashing, knocking, falling over, a part of my body, and that this holds a lot of psychological weight for me.
To have a part of my body observed but never really seen, can be damaging.
Thirdly, and perhaps most crucially, you need to understand and comprehend the meaning of my wheelchair being a part of my body. I think that many non-disabled people struggle to fully grasp this concept, and it shows. When I tell somebody that my wheelchair has broken down, replies might include “don’t worry you can get a new one”, or “you can survive for a while without it though right?”, or “it’s just like my car breaking down so I wouldn’t worry about it”. This ignorance is very unhelpful, but also quite upsetting.
When I ask you to please stop touching my wheelchair, I want you to understand why, and when I tell you that my wheelchair is out of order, I want you to empathise with me.
Recognising the significance of a disabled person’s mobility aid is a crucial step towards equity and accessibility.
Being a wheelchair user is a strange experience full of contradictions and inequalities. All I know is that my wheelchair is most literally a part of my body, for I am a turtle and it is my shell.
Ginny Butcher is a disability activist and law student. Follow her on Twitter @GinnyAndT or visit her website www.ginnybutcher.uk
