Welcome home, Hilary

We’re all rehearsing for the presidency … I always wanted to be commander-in-chief of my one-woman army — Ani DiFranco, Not So Soft

Yesterday evening, just before 7pm, a lady called Hilary Lister completed a round-Britain sailing trip. She had to do it in two bursts, as weather conditions broke the electronics on her boat the first time round in the summer of 2008. If you wonder why a sailing boat needs electronics, Hilary is paralysed from the neck down, crippled by a degenerative disease, reflex sympathetic dystrophy (RSD), also known as complex regional pain syndrome (CRPS) which has affected her since she was 11; she has been in a wheelchair since she was 15 and lost the use of her arms in her mid-20s (she is 37 now). You can read an interview with her from May 2009 here. (More: Shakespeare’s Sister.)

This makes her the first female quadriplegic to make this particular trip. Actually, I don’t see why they have to call her the first female quadriplegic, because she is the first person who is anything like this disabled to do it. A male ‘quad’ called Geoff Holt has also sailed round the British Isles, but Holt, who sailed round the Outer Hebrides and the north coast of Scotland rather through the Caledonian Canal as Hilary Lister did, has a spinal cord injury which clearly affords him some use of his arms (quadriplegic means all four limbs are affected, not necessarily totally paralysed), while Lister has a neuro-degenerative disease and has been left with none. Let’s face it, one mentions that this is the first female to do this or that when it’s a matter of personal physical strength, but take a man’s legs and arms out of the equation and he is no stronger than a similarly disabled woman.

I really wanted to be down in Dover to see her in, but being on the dole and needing to get both a blog entry (which still isn’t published as I write this) and some job applications done, I could not in the end justify the cost of the fuel, which is a shame as it could well be her last big trip as her condition is worsening and there is a real possibility that she will not live another year; the possibility of her dying on this voyage was openly raised, and her support crew were under orders not to resuscitate her if she stopped breathing for more than five minutes. She said she would prefer to die at sea than at home, where she spends long periods on the sofa, alone and in pain, although her breathing problems are less likely to hit when she’s at sea. The sailing is therapeutic for her; even without being in control, her pain abates drastically, and she has said that she has a sense of control when sailing that she doesn’t when on the sofa or being pushed in a wheelchair; she is, to rewrite the Ani Difranco quote above, admiral of her own one-woman navy. One has some sense of this when watching interviews with her; in one recent BBC interview, she had a distinctly halting, almost staccato way of speaking, while those taken on or near the sea tend to have her speaking fluently and calmly. Any picture of her sailing shows her looking rather youthful, calm and happy.

One of Lister’s other projects has been to establish a charity, Hilary’s Dream Trust (also here), whose purpose is to “facilitate the sailing dreams of those with disabilities or significant disadvantages”. At this point I wonder “why just sailing?”, as many disabled people harbour dreams regarding sport or other personal achievement besides sailing. A few weeks ago I came across some videos and some blogs by a quadriplegic woman, who has also been blind since birth, in Canada whose dreams of wheelchair racing have been continually frustrated by people thinking she couldn’t do it, as well as financial difficulties.

Both women suffered an onset of paralysis which spread from their lower legs to their whole body; Lister’s took hold gradually over sixteen years. Kimberley Robbins’s took hold in a matter of hours one night in October 2004; she tells the story here and in these two videos ([1], [2]). Her condition was transverse myelitis, an inflammation of the spinal cord which leaves about a third of its sufferers permanently paralysed, another third mildly so, while another third recover (some also die). Readers of a certain age might remember the illness from the book Not Dressed Like That, You Don’t or its sequel, Everybody Else Does, Why Can’t I?, a fictionalised diary of a teenage girl and her mother written by Yvonne Coppard. The character involved is the girl’s best friend, who emerges from hospital in a wheelchair, although she eventually recovers.

She spent eight months in hospital and rehab, and unlike Lister’s, her paralysis receded, but it left her with a C6 spinal cord injury and roughly the same level of disability as Geoff Holt (updated: actually, Holt’s injury is at C5 and he has much less mobility than Robbins has; he describes it here). Her dream of being a wheelchair racer took hold while she was still in rehab, after she watched coverage of the sport on TV while in the hospital:

I remember discovering wheelchair racing on TV at my step dad’s brother’s house when I was younger. I stopped at the channel just long enough to think about how powerful the athletes must be and mull it over in my head for a few seconds before skipping to the next channel in search of cartoons. That’s the only time I ever remembered even hearing about wheelchair racing until I got a little older and started watching the Olympics on TV. I never paid attention through a whole race before though. It was interesting, but not enough to keep paying attention.

At that moment however things were different. I was one of these people. Part of the group of wheelchair users. I didn’t know any of them, but I felt like we were all connected somehow. Not just through our use of wheelchairs but all of the other things you have to deal with after a spinal cord injury. I knew from that instant that that’s what I wanted to do. I wanted to race!

However, after leaving rehab, she found that people were not willing to help because of her blindness:

When I was discharged from the hospital I asked various organizations that deal with different disabilities about racing and how I would get the equipment I needed to start.

The consensus from these organizations seemed to be the same. Don’t even bother to try wheelchair racing because you are blind and there’s no point in even trying! I was laughed at, talked down to, humiliated and told by numerous people who were also disabled to “try sailing” because there was a disabled sailing group in the area. I asked them if they had any advice about fund raising ideas and was either turned away, ignored or brushed off.

So, sailing is not the dream of every person with a disability. Hilary Lister has told that, after a few sessions as a passenger on the lake, she found she was the only person on the lake who was not learning to sail; how likely is it that Robbins would have got out of that position? Even if she had, she would not have achieved the distinction that Lister has and might not have got the same level of enjoyment out of it if she had (although there is a blind female sailor who has a record of being the first such person to circumnavigate the Isle of Wight). Perhaps it would not have answered the same therapeutic needs as it undoubtedly has done for Lister; even if it had, though, it was not her ambition. Lister made the point that the activities which are readily available to children with disabilities, including sailing trips, suddenly cease when you reach 17; but the same is true of other activities besides sailing! Anyway, reading of Lister’s success and her plans to help others made me wonder if the same people who sponsored her couldn’t help Kim Robbins out, or perhaps they could join forces.

There is a second, more disturbing aspect to this story, which concerns her situation before she started sailing, which was described in this article in the Sunday Telegraph last April; she was left alone for several hours a day in between visits from carers with nothing much to do except look out of the window. I have a sister who is the same age now as she was then, and it is distressing to think of someone like her abandoned on her own for hours, with nothing much to do and in intense pain. Lister herself prefers not to dwell on the past, as she wrote after the story was published, but someone has to as there are probably others in a similar situation. A few years ago, I worked for two weeks driving mentally disabled people around New Malden to their activities centre, to the park and to the pub; most of those I drove around were in group and nursing homes and the idea of them being left in such a miserable state would have been unthinkable. Perhaps it’s a difference between local authorities, and no doubt those activities would not all have been suitable for a well-educated but physically disabled person.

Not that being paralysed to that degree isn’t difficult enough anyway — have a read of this blog, whose author writes of being unable to do the most basic things for herself and of a lack of privacy — but this combination of loneliness, pain and enforced idleness is beyond horrific. Is there an organisation which provides companionship for people in this situation when nobody else can, or will? I don’t mean basic care, because that is already provided, but company and entertainment on the appropriate level. If there isn’t one, perhaps there should be? I thought of the name “Quads’ Company”, after Kids Company, the centre for deprived children and teenagers in London, but perhaps the ambiguity of that name defeats it (the term isn’t that well-known over here, and if I were to say to anyone I knew “this is my friend Kim/Jenni/Hilary and she’s a quad”, they would assume she had three siblings born the same day — in Jenni’s case, even after seeing her ventilator!), and probably not all those who might need this kind of service are quadriplegics anyway.

After all, not all severely disabled people have such ambitions with regard to sailing or other sport, but they still need things to do to occupy them and, if necessary, take their mind off their pain: to sit and talk or read to them, take them out and do things which interest them, whatever that may be. Is there such an organisation? Perhaps one could be set up while Lister’s achievement is still fresh in people’s minds.

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