Together, we will overcome

Here’s a quote from the film Sleepless in Seattle, it’s said by Tom Hanks after his wife dies:
Well, I’m gonna get out of bed every morning… breathe in and out all day long. Then, after a while I won’t have to remind myself to get out of bed every morning and breathe in and out.’

It’s a quote about grief and loss, despair and hopelessness. But it is a situation that I think many of us with long term illnesses and disabilities can identify with. Every day is a challenge when you are disabled.

A few years ago, there was a comedy show called Little Britain it had a character in it who leapt out of his wheelchair whenever no one was looking. I know many people think that is true of a lot of disabled people. As if wheelchairs were a desirable choice. This comes from a misunderstanding of disability. Being a wheelchair user does not always mean a person cannot walk or stand. Wheelchairs can be aids to enable people to travel further when their legs give out.

Wheelchairs can be used on days when someone’s legs are not working, but that they be able may walk a little on a day they feel better. Even some paraplegics have a little use of their legs and occasionally are able to stand or at least move their legs. This does not make such wheelchair users frauds, rather it means that they use a chair because most of the time they cannot use their legs. They use a wheelchair because their legs do not function properly and reliably.

When an illness causes someone’s body to stop working normally, they need to use aids to walk or even use a wheelchair. When they are in a good spell they don’t. I remember when I was first ill and yet still able to walk a little, but struggling to do so. I resisted using a wheelchair for a long time because I didn’t want people staring at me. Instead I stayed at home in a chair for days on end, only being able to go out for very short walks about once every two weeks. Eventually, my very sensible wife said to me, ‘think of them as go further wheels,’ I did that and it was so helpful. Of course, things have changed, I can no longer walk at all. But years ago, when I could, I had to accept that a wheelchair made distance achievable. Distance in that case being anything over 25 yards.

If you have never experienced the massive extension of distance that comes from illness then let me try and describe it. When I first couldn’t walk many steps, I would sit in my chair then I would need a wee. The chair was 5 yards maximum from the toilet. I would look down the short hall at the toilet door and it felt like I was staring at a mountain. I would have the same feeling about making that distance as you would feel about climbing a mountain. When I finally managed to get there and back I used to think there should be the same national celebration Edmund Hillary got when he climbed Everest. OK, I jest, but you get the point.

Someone with a nervous system that is failing can have a good day where they are able to stand or walk short distances. But their long-term prognosis is still the same. Someone with damage to their spine can have intermittent use of their legs. Comedies like Little Britain may have been very funny, but they gave people the idea that disability is a choice. You choose if you use a wheelchair and you only do it when people are looking. Sort of a sympathy and benefit seeking idea; what rubbish! No one in their right mind would choose to limit their life to a wheelchair. The world is designed for legs not wheelchairs; life shuts down in a wheelchair.

Disability is actually much more like a curse; it certainly is not a choice. Don’t criticise and doubt disabled people. Instead, if you meet a disabled person who happens to be positive and happy then they are brilliant people. If you see a wheelchair user managing to walk a few steps, rejoice with them in their short bit of freedom.

Any time a disabled person gets through a day, they are overcomers, they are to be applauded. They should be congratulated on finding the good in their situation and making the best of the good days, not criticised if they ever look bright or well or are able to ever leave their wheelchair. Don’t condemn them to more limitations than they already have. Rejoice with their triumphs and be with them in their sadness. Disability is a curse, but shared and understood it can be overcome to a degree the limitations can be managed. Not totally and not all the time. There will always be that element of: ‘Well, I’m gonna get out of bed every morning… breathe in and out all day long. Then, after a while I won’t have to remind myself to get out of bed every morning and breathe in and out.’ It’s a challenge, but one that can be overcome. Be a support and encouragement that is what disabled people need.

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Have you ever looked at the front of a wheelchair; no? I am not surprised, unless you use one or have a relative in one, why should you? So next time you see a wheelchair out and about, take a look. I am going to get in so much trouble now. People are going to be staring at wheelchair users’ legs and feet. That could be most inappropriate if the user is a young lady and the person staring a man. So, use discretion, I am not suggestion anything untoward here, just an observation of a simple fact: Wheelchairs are designed in a very odd way.

I am not sure whether a wheelchair users’ feet are seen as less important than a wheelchair or it is just thought that a lot of wheelchair users have no feeling in their feet. Either way our feet are the bumpers on wheelchairs! That is what you will notice just before you are arrested for inappropriately staring at wheelchair users’ legs. I pointed this out to the wheelchair OT at my latest assessment, our feet being bumpers, not about staring at people’s legs. He seemed to miss my point about my feet being at risk and talked about the damage done to the wheelchair leg rests. Apparently, they bear the brunt of impacts and are not up to the job. Mind you my toes were not really built for impact either. Obviously, I do care about the damage done to my wheelchair, but call me selfish if you want, I rather value my toes. I have quite a large power wheelchair and it can drive my feet very heavily into a wall or door if I am not careful. I do try very hard to be careful. But there are occasions when a tight corner or an unseen bit of furniture surprises my toes; and me. It is not a pleasant surprise.

We once travelled in a taxi supplied by the train company when the trains were cancelled. They booked a taxi that was too small for my large power chair. I could see that fact immediately and pointed it out. But who am I? Just a wheelchair user. So, the taxi driver overrode my objections and tried to cram my chair into his cab; insisting it would fit. My feet were telling me it did not fit and it took a lot of argument before he accepted that I could not go any further forward and that my feet were already crushed against the seating. Still the OT would have been pleased, the leg rests never touched the seats and so were undamaged. I wish my toes could have shared in their rejoicing.

I asked the OT why wheelchairs do not have a guard around the users’ feet. His answer was more focussed around the weakness of the leg rests rather than protection of the user’s feet. To be fair to him, I think he was trying to say that the leg rests are not a strong part of the chair anyway so you cannot use a guard around them to protect the user’s feet. For my part I would use a car analogy. Passengers in a car are protected by a crumple zone. In the case of an accident it is considered acceptable to sacrifice part of the car to protect the occupants. It seems human beings; if they are car passengers or drivers, are highly valuable. Whereas, judging purely on experience and observation, wheelchair users are not as valuable in the eyes of manufacturers or the legislators who decide the specifications of wheelchairs. Perhaps a few of the people deciding on the safety issues of wheelchairs need to try out a few days in a wheelchair?

Isn’t it time that this changed? Are we as wheelchair users less important of protection than car users? I have highlighted our feet, but wheelchairs are not fitted with proper restraints as standard, nor is there a national standard for their safe transport in cars, taxi’s, trains, coaches and buses. Each wheelchair has its own position and type of fixing point. Likewise, the restraints used in the different forms of transport vary greatly in type and safety.

Perhaps we are seen as a silent minority or an unimportant part of society. Maybe some see us as inconvenience or a drain on resource already. In these difficult times perhaps, there would be many who would question raising any issues that would cost anything to fix. But I would answer this; should we wait for a convenient time before highlighting a potential danger? When is a good time to say that something is unsafe, unfair and needs urgent attention? Now has to be that time. Anyone who has experienced these issues first-hand will understand. If you don’t understand try spending some time in a wheelchair, especially a powerchair. Negotiate tight doorways and corridors. Travel in taxis (smaller ones not the big vans, they are rare) and on buses (that is an interesting experience in a powerchair). As for trains, they are an area all of their own. Even have a trip down the high street and into shops. When you realise that your feet are the first thing that will impact whatever is ahead of you then your perspective will change.

I will end with one last thing to point out about all this. I wear slippers most of the time, even out and about in my wheelchair. That’s because my feet swell, and shoes are extremely uncomfortable. Plus, shoes are not exactly necessary as I cannot walk or stand. I understand that slippers make my feet even more vulnerable, but this is very common for permanent wheelchair users. Those of us who cannot stand up. In fact, I know of many wheelchair users who wear just socks or a kind of flip-flop. So, don’t assume that footwear could be the answer to good protection. Suggesting that a hardened shoe would do the trick just wouldn’t work. Apart from sizing, comfort, and shape there is the issue of the whole foot being attached to your ankle. When an impact occurs, the whole foot is pushed back. A large shoe would just stick out more an exacerbate that effect.

The only answer that would work is to fully protect the user’s feet with a bumper that is not our toes. If each leg plate had a protective strip around the front that would bear the impact. It is true that the leg rest might break in a bad impact, better that than the user’s toes. The leg rests would act like a wheelchair crumple zone. At worst, the whole of a user’s leg would be pushed back a little under the chair. But our toes and feet would be safe. I for one like that idea a lot.

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