‘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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Cuddling and carrying

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Recently I have found myself talking about good things that have resulted from Sam’s birth and life. It’s now less eight weeks until the birth of a new baby so a good time to focus on the positive.

One of these conversations was about carrying Sam. Sam is almost 18kg which is very light for an almost-six year old but quite heavy for someone who can’t support any of their own bodyweight. He has various pieces of equipment to sit or stand in but every day there are dozens of transfers to be done: from bed to changing table, downstairs to specialist chair, out of chair to changing table, back in to chair, in to wheelchair, out of wheelchair, changing table, upstairs, in and out of standing frame, in and out of bath, etc etc. This is just the basics – if we spend the day doing things away from home there will probably be more lifting – so Sam can sit on top of the sculpture in the park like Eli, or to be lifted so he can see animals over the fence, or in order to sneak up on people in the woods.

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We are just on the cusp of getting a hoist to help us with some of these transfers. A hoist is a machine which attaches to a sling underneath Sam and lifts him up. We have known this is coming for a while and I find myself surprisingly philosophical. I strongly suspect Sam won’t mind – he loves swings and hammocks (and zipwires) so I don’t think he will mind repeated suspensions throughout the day. I know there is only so long we can ask others to lift him and we have a responsibility to provide an option that doesn’t endanger back muscles.

It’s the mediation of my relationship with my son through equipment that I resent. At the moment I often lift Sam like (for want of a better description) a baby, with one arm cradled under his neck and the other under his legs. He always looks up when I do this and I can look down at his beautiful little face, and he often has an expression of pure joy and comfort. Should anyone else infantilise Sam I will hate them forever (or close), but I am allowed. I have been carrying him this way for almost six years. One of the joys of early motherhood is the physicality of it – small boys who know your body better than you do and want their skin on yours. It is sad that these moments will be slowly replaced by the attachment of a sling to a hook, the pressing of some buttons and the whirr of a machine. I must find a way to keep the physical connection, for us to both remember the joy of him being on my lap.

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James does most of the outdoor carrying – he is the one helping him climb trees – but I do my fair share of the lifting, including carrying Sam up and down stairs at home. Earlier this year, before I was pregnant, we realised that if I was going to continue doing this I needed to be strong so in addition to running a bit I started seeing a personal trainer who focused on weights and strength. No-one should get the wrong idea about this – my default position is inactivity and I didn’t voluntarily run outside until I was 32. I am no gym bunny. My relationship with the trainer involves him encouraging and/or forcing me to stop being so pathetic while I deny eating a loaf of sourdough bread every week. I do not look like someone who spends a lot of time exercising (because I don’t).

But what began as a way to continue lifting Sam has been a revelation. Partly because it’s time spent doing something completely different to wiping small children, but mainly because I didn’t realise how empowering it would be to feel strong.

Then I got pregnant and as my bump has grown I have carried on lifting Sam and training at the gym. Nothing feels more satisfying than lifting (admittedly small) weights, surrounded by grunting men in vests, in the male-dominated section of the gym. Or continuing to be able to do all of the things I would normally do with Sam while 31 weeks pregnant. Sam is very accommodating of being literally pushed aside by a growing bump. I get a bit out of breath as we get to the top of the stairs when I’m carrying him, but I can do it and I will carry on for as long as I am able. There will inevitably be a month or so post-birth when I can’t lift him and even holding him might be tricky, so I’m making the most of it while I can. I am extremely appreciative of having this body, which is making its third baby and still able to carry its first.

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I have been going through a phase of obsession with the author Kate Atkinson and came to re-read a book of hers recently. I had forgotten how utterly unsuited the storyline is to me right now; I had to abandon it after a scene about a mother being murdered in front of her children precipitated some particularly heartfelt weeping. But just before that I read this passage:

‘ Their mother was wearing Joanna’s favourite dress, blue with a pattern of red strawberries. Their mother said it was old and next summer she would cut it up and make something for Joanna out of it if she liked. Joanna could see the muscles on her mother’s tanned legs moving as she pushed the buggy up the hill. She was strong. Their father said she was ‘fierce’. Joanna liked that word. Jessica was fierce too.’

Kate Atkinson, When Will There Be Good News?

I want to be strong. And when it comes to caring for my kids, I want to be fierce.

Cycling

In our quest for fun weekend and holiday activities, Sam’s tricycle has been a godsend. We are constantly aiming for variety in Sam’s life; things to do that aren’t us reading him books or watching an ipad, activities that get him out of his wheelchair.

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The trike offers all of the above, whilst also allowing a rare opportunity for Sam and Eli to do the same thing at the same time and pace. Both boys have got orange bikes/trikes, and we have just hit the moment when Eli has worked out how to ride his balance bike for longer than 2 minutes without demanding we carry it. Meanwhile, Sam has hit his stride on the trike.

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This means we can spend fun mornings in the park. Sam is happier, and more active, than he would be if we were pushing him in his wheelchair (and strangely less scared of dogs). The boys like racing each other, and I feel like we’re a normal family. Our boys are learning to ride their bikes together, on sunny days, in parks full of daffodils. We’re living the dream!

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We’re not the only ones who like the trike – people smile at us as we pass, much more than they would if Sam was in his wheelchair. I think a big orange tricycle gives people a way in – even legendarily unfriendly Londoners find themselves saying hello. One woman asked if she could take a photo.

We bought Sam’s trike last year. We got advice from various physios and had trials with two companies. There is no statutory (e.g. NHS) funding for equipment like this, and they are really expensive, so we took our time deciding what kind would work best.

The trike we decided on, made by a company called Theraplay, can be parent-operated from behind, so Sam can ride the trike normally with us pushing and steering. This allows it to be as normal a riding experience as possible, but with us doing most of the work. Sam chose to have an orange one.

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Whenever we consider buying big pieces of kit like this there’s a tension between enthusiasm and caution. Enthusiasm for the possibility of this being The Thing That Sam Loves, that he can use easily and effectively, that he is able to operate independently and generally makes all our lives brilliant and fun. Caution because we’re about to spend £1400 on something that Sam might not like, might not be able to use, and then we’ll have to work out how and where to store a huge white elephant and manage our disappointment.

This time the gamble has paid off. We have been slowly increasing the distance and speed that we push Sam. He now likes us going really fast. So far, we have been doing all the work – Sam’s feet are forced round as we push the trike forward, but we might be on the cusp of him being able to do some of it himself.

He finds holding on to the handle pretty tricky, but he can sometimes push the foot pedals round on his own now. We still hold the handle in order to steer for him but for a couple of metres we aren’t pushing at all – all of the forward momentum is Sam on his own.

This is the moment that I really hoped might happen, but was worried might not actually materialise. To pedal the trike, Sam needs to control his legs separately and time it right. It is difficult for him but, like so much that he does, he is trying really, really hard. Well done that boy! Well done that trike!

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The way things look

I was struck by a conversation I had with an Occupational Therapist (OT) when Sam was very small – she is perceptive and (typical of all good therapists) sees her work in the context of the whole life of the children she treats. She was commenting on how lovely Sam was and said that would be useful to him because he would probably always need people to help him. It’s true – both that people are always more willing to go the extra mile for people who are smiley and engaging, and that Sam depends on people going out of their way for him.

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Partly as a result of conversations like that, I always try to make sure Sam looks good. I buy him nice clothes that work for him and us (jumpers we can get on/off, coats that fit in a wheelchair) and look smart after a day sat in a wheelchair. I buy things in cheerful colours that will suit his slight frame. I enjoy doing this – I do the same for his brother – but I think it’s particularly important for Sam. We have to maximise the chances of strangers seeing past a disabled child in his wheelchair and noticing the cool little kid. Of course we don’t always manage it (there are plenty of days when both our kids look like Dickensian orphans) but we try.

We are supported by my sister’s attempts to inject cool. I don’t know how many other children wear Nike Air Jordan’s over their ankle-foot orthoses.

[This could all be an elaborate excuse for me to spend more money in Scandinavian clothes shops but don’t tell James that.]

We can’t buy everything from mainstream shops but I seek out the best of the options. Sam dribbles sometimes and he wears a bib all the time so they can be changed easily without his clothes getting wet. Very early on we bought bandana bibs in bright colours which are kind of his trademark now. I hate the idea of him in baby bibs and have known to be quite stern on this front. He’s disabled, no need to infantilise him.

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If he does need specialist aids, I think they should recognise his age. A really good example of this is his hand splints.* ‘I’d really like to wear hand splints’, said no-one, ever, but the designer of these thought about them being for kids, decided against making them flesh-coloured in the hope no-one would notice them, and made them colourful. It’s probably not a coincidence that they were ordered by the OT mentioned above.

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But for some things, particularly equipment, there aren’t many options. It’s a constant source of frustration that things Sam needs are ugly and clunky.

I trained as an architect and care about how things look. I’d rather not have a sitting room filled with supportive chairs, standing frames and walkers but I have no choice. These pieces of kit are helpful and Sam uses them every day so we have to look at them. They are so specific that not many companies make them, so our choices are limited.

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Sam’s bed is the exact opposite of the hand splints. He was growing out of his cot and needed a larger bed that could be raised and angled. Everyone agreed we needed a “profile” bed. Our local social services only supply one kind of these. It’s a full-size single mattress and looks exactly like a hospital bed. The only thing that differentiates it from an adult bed is that it has cot bumpers on the side rails which are flesh-coloured. I can’t begin to understand why anyone would think that was a good idea.

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When I asked if there were any options that would be more suitable for a five year old boy, the therapist (not the one above) suggested we could put stickers on it. I have actually done this. It took an hour to stick stars on every available surface. Now Sam often has a scrunched sticker stuck to him when we get him out of bed, but the bed still looks like it should be on a ward and I resent the fact that while some boys get to sleep in beds shaped like cars, Sam gets the same bed that he recovers from anaesthetics in.

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I have loads of examples on this theme: the time that I ordered an expensive specialist hood for Sam’s supportive buggy which took months to arrive and looked like something a 15 year old made in their school workshop. Actually, not by me at 15 because I’m quite good at making things, but by someone who shouldn’t have taken Design & Technology as a GCSE option. I returned the hood and wrote a letter to the manufacturer explaining why this product was ugliest thing I had ever seen and didn’t even work. Then my husband rewrote the letter to be slightly less offensive and the company said they ‘value feedback from our customers and will act on the constructive elements of your letter’. Ha!

The poor aesthetics bother me, but so does the absence of real design expertise. It’s not good enough for a buggy to just provide the right postural support to a child; that buggy is also going to be pushed by parents and folded up hundreds of times. A buggy that repeatedly injures the adult folding it and causes grandparents to spit expletives is not a good piece of product design.

There is one unanticipated side-effect of all this frustration and lack of control. When Eli first needed proper winter shoes I considered giving him Sam’s old boots. They’re specialist, supplied by his physio, but essentially just boots. They’re in pretty good condition since Sam never walked in them!

James told me I was being ridiculous.

So now when Eli needs new shoes (which feels like every month), I take him to a shop and choose the shoes I like most. I don’t look at the price and I don’t care whether they are the prudent choice. It is a joyful luxury to choose your child’s shoes based on looks alone and I love it.

* Sam has his hands fisted most of the time and his wrists bent outwards. The splints, which he mostly wears at night, are an attempt to stretch out his wrists and fingers to avoid him losing range in the muscles.