I have been thinking a lot recently about we approach Ben’s wheelchair. I have written before about the differing perceptions of wheelchairs – particularly, how once you are over the psychological hurdle of not walking, wheelchairs are freeing, wonderful things that can compensate for legs that won’t support a moving body. It’s a very simple and elegant solution to a problem. I think the outsider perspective that wheelchairs are constrictive and negative is largely based on someone’s fear that their own legs might stop working. Restrictions placed on wheelchair users are largely a result of the environment around them being inaccessible rather than the inherent disadvantage of using a wheelchair. Perceiving wheelchairs as negative isn’t inevitable – Max loves having a turn in Ben’s chairs and sometimes wonders whether he’ll have one when he grows up.
When Ben was small we were fearful of him not walking (though it became clear pretty early that this was likely). When he was young he was in a buggy, which was age-appropriate and no big deal. As he got older he moved into a specialist buggy, and then into a paediatric wheelchair. We needed time to get used to each stage; they were harsh physical reminders to us of his disability. But we accepted and adapted, and actually his inability to walk was towards the end of our list of worries. Ben’s difficulty with eating and communicating were (and are) harder for him day-to-day and have more impact on his quality of life than his inability to walk.
I still don’t love his wheelchair – I don’t think it’s designed that well, or looks that nice. It was given to us by wheelchair services. Considering how much time we spend looking at and interacting with it, I’d quite like to be more involved in the choice. I sometimes resent the difficulty of manoeuvring it around, the fact it means we can’t go in some buildings or use lots of public transport. It’s hard to clean and occasionally bits fall off. But Ben using a wheelchair, and us therefore being able to go to ice rinks, museums and parks, is infinitely preferable to us being stuck at home. He is perfectly happy in it.
I recently read a blog by Tonia Christle, a disabled woman, about her experience for growing up with a cerebral palsy. She writes about the early years:
‘I am five.
My family likes taking pictures of my sister and me. We like being the same. Our clothes match, but not our bodies, because I have a walker and my sister doesn’t. When we get our pictures taken, our family likes us to be the same, too.
They like me to stand without my walker. They say it’s better that way. They are grown-ups, so I listen. I stand leaning against a wall, or hanging onto a chair or a cabinet, or my sister. Just as long as my walker is not in the picture. My walker makes me worse, so I stand far away from it.
I want to look my very best for the picture so I smile, hanging on very tight so I don’t fall.
My family never came right out and said they wanted “normal” kids. However, as a young child, I listened to the way my family spoke about me and my adaptive equipment (which is very much a part of me.) And, though I am now in my thirties, pictures of me with my walker, crutches or wheelchair are rare finds. Many pictures are portrait-style and don’t even include my legs.’
I am definitely guilty of this to some extent. We have plenty of photos of Ben in his wheelchair (or home chair, or standing frame, or walker). But we also have photos where we have taken him out of his wheelchair so that the chair isn’t in the photo, so he ‘looks his best’. I have taken photos of his face (not his body) because I think this is most photogenic (which is partly because, of course, his face is VERY photogenic in my entirely unbiased opinion!).
(I’m not pregnant again – old photo to illustrate our normally unsuccessful attempts at group family photos)
We presume competence with Ben (we assume he can understand everything we say), and I try not to let anyone talk in front of him negatively, but I hadn’t really thought about the impact of talking about his equipment.
‘Your child is unique and special because they use adaptive equipment. It is something to celebrate, because this equipment allows your child the freedom to live the life they want to live.’ Tonia Christle. (emphasis added by me)
This idea of embracing the equipment is crucial if you are the parent of a disabled child, and involves a bit of a mindshift. It takes time, and we are getting better (I hope) as Ben gets older. Being a good mother, and ally, depends on accepting Ben as he is. That means embracing all of him and his aids. His wheelchair makes him better, not worse.
We must accept this not just in words and intention, but in the everyday: in our photos of this time in his life, in how we talk about his equipment. Don’t talk about how annoying his wheelchair is, how cumbersome, or how ugly. Don’t deny how intrinsic it is to him. Don’t let anyone else talk this way in front of him either.
This is obvious. We are careful to talk to our kids about what they can do rather than what they can’t. We talk positively about disability, equality, difference. We need to remember to include Ben’s equipment in our acceptance of his difference.
I was reminded of this revelation by a recent exhibition in London of paintings by Lucy Jones . Jones is a talented, successful artist who happens to also have cerebral palsy. She has painted self-portraits throughout her career and this exhibition includes a self-portrait with her walker.
An essay about her work describes the context of her self-portraits (which includes feminism in the 1970s), the effect of prolonged study of her own body, the depiction of her disability:
‘In Lucy in the sky 2005 she wanted to say something about being happy, about feeling safe. She is out walking, with her wheelie; she can’t fall over and is free to go anywhere. The painting started with her face, then she added the black and red top, after that the pale blue trousers. Then she had to decide on the background.’ Sue Hubbard, ‘Becoming Lucy Jones’
Jones’s disability is represented in her paintings and is part of their creation. She talks about how as her confidence grew through her career, she began to paint more of her body, to paint the ‘awkwardness’ of how she looked with CP. These paintings are about how she sees herself, how others see her, and what others project on to her. The paintings describe her coming to accept her walker as being part of who she is, and having the self-confidence to represent it.
The reality of disability is that much is projected on to disabled people and often the problem is with other people’s perceptions rather than the disability itself. The aids and equipment are helping, they’re not a hindrance, and we should treat them as such.
We mustn’t make Ben think he is less because he uses a wheelchair, but rather try to help him have the self-confidence to use it proudly.
Tonia Christle blog: http://www.ellenstumbo.com/growing-up-with-a-disability-the-preschool-years/
Sue Hubbard’s essay ‘Becoming Lucy Jones’ in Lucy Jones: Looking at Self, Momentum Publishing, 2006
Exhibition: Lucy Jones –The Cycle of Life, Flowers Gallery until 21 May http://www.flowersgallery.com/exhibitions/view/lucy-jones