New wheelchair

IMG_4188There are certain milestones along this journey of being a parent of a disabled child which are inevitable. Some are actually the omission of milestones: the missing of typical developmental steps, the absence of a first spoken word, there never – in our case – being a first step. Others are very much present: the diagnosis of impairment, the first feeding tube, the first operation.

One of the big ones is the first wheelchair. It’s possible to keep a baby, and then a ‘toddler’, in a buggy for a long time. At some point it becomes clear that the buggy is insufficient and some kind of wheelchair (or the compromise, a ‘Supportive Buggy’ is necessary). This will be for lots of good reasons to do with postural support. It is entirely possible to be convinced by the need for the wheelchair and sad about the arrival of it simultaneously.

Sam had his first wheelchair (more of a supportive buggy) when he was two. It was needed – he didn’t look at all comfortable in the buggy we had for him, and it was showing the strain of near continuous use. So we went for a fitting and a few months later it arrived. We heaved it up the steps to our house.

I wasn’t in love with it, but I could see the advantages. He sat well in it. It folded, so just as with his previous buggy we could lift Sam into his car seat and put the wheelchair in the boot. The slight difference was that doing so injured us almost every time.

Since Sam was still young he often slept in the buggy, and he was sensitive to bright sun, so we asked about a hood and rain cover for the wheelchair (as is standard with  a buggy). It turned out that as these were not ‘essential’, they would not be provided by wheelchair services, but we could choose to buy them ourselves. They arrived just after Eli was born and I remember fitting them while James held tiny Eli. They worked, but were incredibly clunky and would need to be removed every time we put the wheelchair in the car. They looked like something someone had made in their garage and were as far removed from the slick design of a buggy as you can imagine. I was really cross and after crying for a bit I wrote an extremely grumpy letter to the manufacturers which James had to tone down so that it was only quite cross. We sent them back and found our own solution. I have written before about the way things look here

Since then Sam has had two more wheelchairs, each a bit more ‘wheelchairy’ than the last. Over the last six years we have adapted our house and bought a “Wheelchair Accessible Vehicle” (a car with an in-built ramp, blog about it here) so we have fully accommodated the wheelchair into our lives. I see the wheelchair as an enabler for Sam, and we make do with hats and ponchos so there are no resentful conversations with suppliers of wheelchair hoods.

But what I still struggle with is the particulars of each wheelchair. Sam’s wheelchairs are supplied by our local service which is staffed by great people but, like all NHS behemoths, can be a bit inflexible.

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When we first discussed the possibility of Sam needing a bigger chair last year they showed me the type of chair they thought would be most suitable. Even allowing for the fact that it wasn’t the colour we would pick, and wasn’t set up for him, the chair I saw was really ugly. The base looked to me as though someone had rustled it up out of some spare scaffolding poles. I could see it was practical, and I was told that it was one of the most reliable chairs, but it was winning no prizes for elegant design. The seat was covered in weird synthetic fabric that had a clichéd care home vibe. It was enormous compared to his current wheelchair, and relied on a ‘knee block’ (literally a shaped block, fitted around the knees) to keep Sam in the right position, which he had never had before.

I knew Sam would need a new chair soon, and I respect the opinion of an Occupational Therapist who knew about seating for disabled people. But this was a chair that Sam would use every day, sometimes for 12 hours a day. We would see it every day – in our house, in our car, in family photos. In what other sphere of your life would you think about acquiring something like this and accept the first thing offered to you which happens to be the one in stock? Do people buy cars they hate the look of? Do people get dining chairs that they’re not sure they’re going to find comfortable? There is a huge market for buggies which people spend thousands on and have the kind of designers who formerly worked on Formula One cars.

Of course it would be replaced if Sam wasn’t happy and comfortable, but I really hate the clunkiness of wheelchair design. I resent spending a lot of time incorporating Sam’s needs into the design of our home which – if I do say so myself and may possibly have pointed out before – is beautiful AND fully accessible, only to have it cluttered up with something that may be technically good but is aesthetically shit. It’s unfair to have options for large purchases in every other aspect of our lives, but not this.

The wheelchair service was patient, told me to have a think about it, have a look at other options privately (while recounting some horror stories of chairs breaking and families having to arrange fixes themselves…). Meanwhile, Sam kept growing. An engineer came to adjust the eyegaze mount on the wheelchair and we had another conversation about the chair – we all knew his current chair wasn’t quite heavy enough to support the device, and that a bigger chair would be better. After listening to my monologue about scaffolding poles she mentioned that the base came in different colours. She emailed me later to say it definitely came in black.

And so, slowly, I came round to the idea. The seat fabric could also come in black which made it look a bit less healthcare setting. We eventually ordered the new chair, and it arrived last month. Sam very patiently sat through adjustments and we brought it home with us.

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You know when you are away from your kids for a few days and when you are reunited it’s like you are seeing them anew. You notice the size and the feel of them with a jolt – both familiar and novel. It was like that with Sam in the new chair – it was Sam in a wheelchair, which is our daily experience, but he looked taller and older and relaxed. It made me feel like I must have been squeezing him into a ridiculously small chair before, like we hadn’t noticed that he was now eight. Pushing the new chair is like a dream – no weird knobbly bits on the handle, much less veering unpredictably into gutters. It comes with a tray which is a perk. There’s even just enough room on the side bar for Stella to hitch a lift (don’t tell wheelchair services…)

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There’s of course a little hint of melancholy – it’s wider, it will be a bit harder to squeeze into small spaces. We won’t be able to carry him and it upstairs to friends’ first floor flats like we have done recently. These are sadnesses relating largely to physical barriers, not to Sam’s need for a wheelchair.

Sam’s not hugely keen on the kneeblock so we’re taking that slowly (not as unkeen as we originally thought though – turns out his shoes were too small and we hadn’t noticed which was making him understandably grumpy). It’s all come good in the end. Bring on the adventures.

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‘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

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.