Month: January 2015

Chairs of Freedom

/ jess / Leave a comment

Using a wheelchair is a sort of shorthand for being disabled – easy to understand, simpler to explain than a gastrostomy or dystonia or dysphagia, and a good graphic symbol. It is the approachable face of disability – a chair with wheels! We all understand chairs!

But of course they are also intimidating. Many parents of recently diagnosed babies wonder whether their child will walk, whether they will need a wheelchair. Lots of people have asked us if Ben will walk, whether he will always need his wheelchair. Everyone is preoccupied with walking, when its significance for us has been eclipsed by other more pressing matters. At least weak legs can be compensated for with a chair; finding a way to get round the inability to eat or talk is much more complicated.

If you have the good fortune to walk up stairs and run up hills then a wheelchair seems incredibly restrictive, something to be ‘confined’ to. However, if you find walking difficult then a wheelchair is an optimistic, helpful aid – providing the opportunity to get out in to the world (stairs/kerbs/snow/sand/mud/gravel/cobbles permitting). It’s crucial that it fits right, that it supports in the correct way. Ben spends hours in his.

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Ben’s wheelchair is provided by the NHS (I think, to be honest I’m not certain) through our local Wheelchair Service. We’ve worked our way through a couple so have visited numerous times and once we’re there we meet knowledgeable therapists who try their best to find and adjust the best chair for Ben.

But the process! The process of getting to the actual appointment is enough to drive me nuts.

Unlike every other aspect of interaction with therapists who work with disabled children, there is no process for review except for me to think, ‘Oh, Ben’s grown! He’s not looking as comfortable in his wheelchair, let’s make a wheelchair appointment’. Or to think, ‘Actually he’s flopping to one side in this chair, it could do with an expert reviewing it’.

Meanwhile, if something on the wheelchair breaks, we’re supremely relaxed. Should we find ourselves in a restaurant for lunch and Ben’s footplate drops on to the floor, we just call Wheelchair Maintenance. That is a totally different ballgame. One phone call and they will visit Ben’s chair at school the following day, wheel it off in to their magical van, and back it comes Good As New.

But if I phone the Wheelchair Service because the chair needs to be adjusted or reviewed, they put Ben on their waiting list. Two – four months later he gets an appointment, generally in the middle of the day so he misses hours of school.

One/two/three months is a long time for a boy who sits in the chair every time he leaves the house. Every time he visits the cinema, or gets on the school bus, or goes to meet Michael Rosen.

Of course, what actually happens is that I wait until Ben is looking like he might possibly be getting a bit longer and so in approximately three months time his chair will be too small, and so I phone and put him on the list.

It seems to me ironic that it’s so hard to see a wheelchair therapist, when they more than anyone realise the value of a good wheelchair and take pride in making sure wheelchairs are comfortable and practical.

This is an absurd system. It is bonkers to not acknowledge that children grow. Every other piece of Ben’s equipment can be adjusted by a physio or occupational therapist at home or school, and they will do it within a week or so of a problem being identified.

I have no doubt the reasons for such a creaky system are many and varied; I have expressed my frustration at length with the friendly, talented therapists who work for the service! Presumably there’s not as much money as there could be in areas like this. I have been told it’s difficult to recruit therapists to wheelchair services – it’s maybe not the most glamorous end of the physio world. The service has a high rate of DNAs (Did Not Attends) because by definition the kids they see are more complicated than the general population, more likely to be ill, more likely that something will come up last minute, and the DNAs mean fewer appointments to go around.

One of the advantages of having a comfortable, functioning wheelchair is you can use it to go ice skating. Then you realise that being in a wheelchair works incredibly well. Ice is one of the few environments where people in wheelchairs experience no inconvenience, while walking people are near-incapacitated. Hanging on to Ben’s wheelchair becomes really helpful, and then we can whizz him around at high speed, something he loves, as long as we go as fast as possible.

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12 Thoughts About Physical Disability prompted by Stephen Hawking in The Theory of Everything

/ jess / 5 Comments

I went to see The Theory of Everything this week, a film about the physicist Stephen Hawking and his relationship with his wife Jane. Hawking is diagnosed with Motor Neurone disease at the beginning of the film and becomes progressively more physically disabled just as his scientific career is taking off.

It is brilliant. Eddie Redmayne as Stephen Hawking is extraordinary and his portrayal of encroaching disability is utterly convincing. Many aspects of his life are common to any physically disabled person but his experience is particularly relevant for people whose intelligence and cognition are unaffected.

It is a salutory reminder of why some people in the disabled movement use the phrase ‘not yet disabled’ to describe able-bodied people. We are all just one diagnosis away from being disabled.

How Hawking’s increasingly weak and uncooperative body affects his life and his family are portrayed well and are familiar, hence why I spent a bit of time weeping in to my sweets (£8.47 worth of pick-a-mix to be precise. I KNOW, it’s a reaction against never being allowed sweets as a child).

There are obvious differences between a genius physicist losing motor function and a small boy being born with brain injury that leaves him physically disabled. Ben is actually very interested in space, but let’s all agree he hasn’t yet written a cosmic book that has sold 9 million copies.

But there are similarities, so in the manner of a Buzzfeed article, here is a list of 12 thoughts about being (or caring for someone who is) physically disabled prompted by The Theory of Everything:

  1. Physical disability can be a bit shit, and everything would be easier for Stephen Hawking and for Ben if they weren’t disabled. This is very sad, and it’s easy to become overwhelmed by the sadness, but resist because…
  2. It’s possible to live a good and full and useful life if you are disabled. This may mean you redefine Time or it may mean something less ambitious, but it can be a life well lived.
  3. It’s not necessarily that easy for the family members who surround a disabled person (Hawking was keener on physics than he was on making things easy for his wife) but people will do a lot for those they love, and will do it happily (until they, like Stephen, divorce you for their nurse. Let’s brush over that for now).
  4. Kids and siblings are great. They tend to be cheerful and accepting of disabled people and like riding on wheelchairs.
  5. Male carers or helpers are really useful – physical strength is hugely valuable if someone’s body doesn’t work very well. Such strength can enable things to happen, such as overcoming the fact that…
  6. Wheelchairs and beaches are inherently incompatible.
  7. Working with a good speech and language therapist can make all the difference.
  8. It’s all about communication. It is totally crucial to find the right system of communication, find the right person to make it work, and make sure it keeps working.
  9. Avoid stairs. If that means having a bed in your kitchen, so be it.
  10. Get help, from friends, family, volunteers. Employ people if you can.
  11. If you’re the carer for a disabled person, don’t lose yourself. Jane Hawking’s love of Iberian poetry was subsumed by Stephen’s obsession with black holes and his refusal to allow others to help. It needn’t have been that way.
  12. Felicity Jones, who plays Jane Hawking, looks 15 years old at the beginning of the film, and about 18 years old at the end when apparently 30 years have gone by. Perhaps caring for a disabled person bestows some magical anti-ageing properties? I’ll come back to you on this.

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Advice

/ jess / 4 Comments

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Late last year I gave a talk about Ben and myself to about eighty paediatricians taking part in a training day at the Royal Society of Medicine. I had twenty minutes to give ‘A Parent’s Perspective’. The main challenge was to edit sufficiently to fit within time – given the opportunity there is much I can think of to say. If I were allowed to do Mastermind with Ben as my specialist subject, I would blitz it.

They were a receptive audience and gasped (‘Ben had 157 appointments last year’) and laughed (niche jokes about junior surgeons’ lack of interpersonal skills) at the appropriate points. I was asked a number of very perceptive questions at the end, but I was really struck by one:

“What do you wish you had known, or had been told, when Ben was born – and what would you advise someone just starting out on a similar kind of life to yours?”

I didn’t immediately know how to answer this, but after a momentary panic in front of a large audience, I thought of something and here I will expand on it.

When Ben was in hospital just after he had been born I was expressing breastmilk for him, something I was finding relentless and dispiriting. A breastfeeding support worker put me in touch with a woman I will call E, who had expressed for over six months because her child had difficulty feeding.

Once Ben came home from hospital I couldn’t keep up with a brutal regime of pumping, bottle-feeding, tube feeding and sleep deprivation, so I stopped expressing milk. But by that time I was in touch with E anyway, and she came round for a cup of tea. She told me she thought I was doing brilliantly which was incredibly encouraging.

Meeting her in the first few months of Ben’s life was hugely important. Her son was very different from mine, with a totally different condition, but there were similarities between our lives – not least the shock of realising things are not (and probably won’t ever be) as you expected.

Most importantly, she was heavily pregnant with her second child. The idea that she had been able to accommodate all of the difficulties of her first child sufficiently to decide to have another one gave me hope. Not just that it might be possible to have another child, but that our lives might one day be as optimistic.

I stayed in touch with E and we met periodically, through my emergence from the fug of the aftermath of Ben’s birth, and the births of my second and her third child. It was comforting and fun.

This kind of camaraderie is not unique to parenting a disabled child – much of the success of NCT is because new parents need solidarity and someone who understands the challenges and joys of a brand new baby. But finding yourself talking to a parent of a disabled child is a bit more niche and therefore perhaps a bit more special. There is huge solidarity and comfort in talking to people who have experienced similar difficulties to you, who you don’t have to explain everything to. It is most uplifting if those people are thriving, but actually any contacts will do.

I have since met many other mothers of children who are disabled, complicated or simply non-typical. I tend to find these conversations are accelerated – with no need to do as much explaining, we will very quickly be discussing private feelings and traumatic experiences. We recognise the similarity of our lives, and our subject matter touches on all of the most intimate and important aspects of being human: what your priorities are, who you were and who you have become, how and who you love.

Or sometimes I’ve just had a chat about purely practical matters. No deep connection, but getting the number of a good physio is valuable. Sometimes having a disabled child in common is not enough, and someone is just not my kind of person, but that’s fine. Sometimes things are not going very well and I just need to hunker down and get through it, not talk to anyone.

Over the years these acquaintances have come in many guises – friends of friends, women from the supermarket, bloggers, parents accompanying their children to sessions at Small Steps or fellow students on a course. I have valued these connections hugely.

So if I met myself five years ago, I would say find some friends who have been in a similar position. Either online or in your city. There are people who have survived a life like yours, and many who have thrived. You are not alone.

(You could always send me an email)

P.S. These photos were taken by my brother-in-law, a paediatrician, who attended the conference. People thought he was really weird and a bit obsessed with me and Ben until they realised he was related to us.

P.P.S. I think of my approach to make-up as quite restrained. These photos would appear to show otherwise.