‘Looking his best’: attitudes towards wheelchairs

I have been thinking a lot recently about we approach Sam’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 – Eli loves having a turn in Sam’s chairs and sometimes wonders whether he’ll have one when he grows up.

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When Sam 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. Sam’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 Sam 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.

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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 Sam 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!).

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(I’m not pregnant again – old photo to illustrate our normally unsuccessful attempts at group family photos)

We presume competence with Sam (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 Sam gets older. Being a good mother, and ally, depends on accepting Sam 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 Sam’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.

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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’

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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 Sam think he is less because he uses a wheelchair, but rather try to help him have the self-confidence to use it proudly.

 

References:

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

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Sam can cycle!

Milestones are a tricky thing for parents and children like us and Sam. Many of the obvious ones from early childhood never materialised and perhaps some never will. If they do, they will be the result of years of hard work on Sam’s part, considerable therapy input and a lot of patience. This is why we start to talk about ‘inchstones’ (as I have done here) which are no less valuable than the typical milestones. Inchstones recognise the scale of greys that we operate in; Sam can’t sit on his own but has worked up from always being held to being able to sit unsupported for two minutes. In our world, this is brilliant progress.

So there we are, pottering along, Sam working really hard on every aspect of his life, accumulating the inchstones. James and I are a bit distracted by the birth of Stella. It’s mid-winter (albeit one of the mildest winters on record) so Sam hasn’t been going out on his trike that much but we have been trying on the weekends when it isn’t raining…

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And then…

He is off! Riding his trike on his own! An unequivocal milestone! Starting with the odd couple of independent cycles with his legs, building up within minutes to confidently pedalling his legs round and round, spinning in circles. I wasn’t there to start with but James sent me jubilant videos by phone and by the time Stella and I got there Sam was happily cycling around the basketball court. We were all so happy it’s tricky to find a video that doesn’t have someone shrieking in it (I’ve muted the sound to save our blushes) but no-one was more excited than Sam himself.

It’s fantastic.

Because cycling is fun.

Because cycling is what six year olds do.

Because it’s Sam being able to move from one place to another entirely under his own steam which he hardly ever does (he can walk in his walker a bit but it takes a lot of effort and is therefore a bit inconsistent).

Because learning to ride a bike is a bona fide milestone (granted Sam can’t yet steer himself but let’s not quibble over technicalities).

Because Eli also learnt to ride his bike in the same week and it’s lovely for brothers to do things together.

Because, above all else, Sam was proud of himself and that is a beautiful thing.

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Just in case it’s a while before another milestone comes along, I’m going to dissect a little how this one came about:

Patience and persistence

We have now had the trike for 15 months. We don’t use it every day but most weeks we have pushed Sam in the trike with his legs getting used to going round. I wrote a blog in April last year about Sam starting to cycle himself but it’s not until now that it’s happened reliably. These things take as long as they take. We must be patient and give Sam the chance to learn and develop the skills – it’s no use expecting things to happen quickly and, equally, just because he hasn’t done something (be it cycling, or learning letters, or using an eyegaze computer) within the arbitrary timescale imposed by some adults, doesn’t mean it won’t happen eventually.

Opportunity

As I wrote about here, we bought the trike privately as there is no statutory funding for such equipment and it was really expensive. Sam therefore had the opportunity to learn how to cycle, little and often, over time with no pressure. Kids like Sam have to be given access to equipment and activities even though things like trikes cost over ten times more than a normal child bike.

Enthusiasm

James and I are pretty good at taking Sam out in the trike but probably the thing that tipped the balance in favour of success was his new nanny/carer. She was with James and Sam the day that he nailed it and was coming to it with a level of enthusiasm which we had probably lost over the last 15 months. Sam really likes her and she was encouraging him to pedal on his own having given him a little push, and off he went. Maybe if James and I had been doing the same old pushing we wouldn’t have realised he was ready to do it on his own. It’s perhaps an obvious point but enthusiastic, skilled carers contribute hugely to Sam’s life.

Self-confidence

Because Sam is so dependent on others to help him with every aspect of his life, it is rare that he can do things on his own or that he can take full credit for them. I love that he was so pleased with himself for cycling, and that all of his patience and determination over the last year has been rewarded. When he went to school after the weekend we recorded a message about it on his communication button and sent video links to his teacher so his whole class watched him cycling. His teacher said he was thrilled when they discussed it and the idea of him sharing his huge achievement with his friends with a big smile on his face makes me feel all warm and fuzzy. The boy deserves a bit of self-esteem.

Siblings

Eli learnt to really cycle his pedal bike the day before Sam’s achievement – he had been getting close for a while but required a hand on the back of his neck at all times which limited progress somewhat. It may be coincidence that the boys did it together, but probably not. They really keep an eye on each other and the interaction between them is great for them both – Eli wants to do what Sam does and learn what he learns, Sam is encouraged to try games and activities that he wouldn’t tolerate at all if Eli wasn’t around. This is the latest in a long list of examples of why having siblings is brilliant for them both.

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Brain surgery

It’s possible that some of this physical progress is down to the stimulators in Sam’s brain. The jury’s out at the moment – let’s wait and see how the rest of the year goes.

So hooray for big orange trikes and small persistent boys.