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Chest supports

This post is about having and using a chest support when sitting in a wheelchair. When I sit in my wheelchair I need to have a support across my chest to stop me falling forward because of limited trunk control. I am not very stable when sitting so the strap holds me in place and gives me extra support. This is totally normal to me but I have not always had to wear a chest support.

The first time I was introduced to one was in secondary school and during that time I was completely against even trying it. The support was more akin to a racing car harness seat-belt that goes over your shoulders and clips on your chest but with a zip at the front. In school, I had much better torso control when sitting down and I would also lean down to the desks to write in my books, but the harness prevented me from moving forward at all.

At the time, it felt too restrictive and as a fiercely independent person it just seemed like it would limit my abilities. I also worried about what it would look like and what other kids might think, and it was enough to completely put me off chest supports for a while at least. I think I tried it for about 5 minutes and said ‘this isn’t going to work’. Whether it could have improved my posture or delayed my scoliosis who is to say, but as a younger person it just did not seem or feel in my interest.

Now I am older, I wear an elastic chest strap all the time in my chair and have been doing so for about 5 years now. Having an extra support is definitely a useful thing when it is needed. I see it as a positive thing for me even rather than a negative, even though it was initially something I was worried about. It holds me up which keeps me comfortable, maintains my sitting position and allows me to better use my arms for driving or using a mouse. Also, it is not completely rigid so I still retain some movement.

Adapted Controller

There are now many types of controller and methods of adapting controllers to help disabled gamers. I have a Mad Catz Xbox controller which I bought a few years ago after I had a home visit from the charity Special Effect. Afterwards, we concluded that it was a good option because you could swap the analogue sticks around to different locations and it was compatible with pc as well. In addition to the controller, I have two micro-switches attached to be able to use the trigger buttons which work using various pieces of software like cronusmax. Micro-switches and buttons are very useful for improving your gaming experience as they can be placed within easy reach so give you a more comfortable button layout. With Duchenne, it becomes too difficult to properly hold a controller, so anywhere a button can be adjusted or replaced with something easier to press makes your response quicker and your game better. How the controller is positioned is also a factor in adaptations. I use a clamp and a flexible arm to attach the controller to my wheelchair in a comfortable and easy to reach place just in front of my hands. Below is a picture of me set up with the controller.

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Furthermore, I am looking forward to trying out the new adaptive controller from Microsoft to see how useful it could be. It definitely looks like it has great potential to make gaming easier by creating a sort of hub for all the different controller inputs like buttons and triggers. It is good to see disabled gamers being considered and catered to more and more with new technology by companies and developers. There are now many emulators, button mappers and controller types to choose from to help disabled gamers, which is a very positive thing. Without these options, I would not be able to enjoy many of the games I love, and by providing these methods, game developers are improving the inclusiveness of gaming.

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VoiceAttack software

Where has this been all my life? I recently stumbled across this piece of software while looking for a new mouse. I went onto a website and saw someone using VoiceAttack to help them play some games, so I thought I’d give it a go myself. I would definitely recommend buying it as it is easy to use, requires very little training, and cost less than £10. VoiceAttack allows you to use voice and other actions to input commands. Using a microphone, for example, you can create a voice command to press a button or perform an action in game. I have used other similar software before for my console but not to play pc games, and VoiceAttack is a really great way to enhance your gaming experience. So far I have only played one game (Star Wars Battlefront 2) with VoiceAttack enabled, but it made it so much more fun. Rather than just using mouse clicks to move and fire, which is my normal method, I can use powerups, crouch and jump just by saying ‘jump’ or ‘aim’ for example. You can also create a number of profiles, which can be tailored for each game you play and changed very easily.

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Gaming

Gaming is something that I very much enjoy doing, both on pc and console. A lot of games are not the most user friendly for people with Duchenne given the lack of strength in our arms and hands, but increasingly disabled gamers are being considered by developers. There are now lots of other ways to improve your experience, such as with micro switches, adapted controllers, and voice commands, a number of which I have only just learned about. In this section I want to talk about games I like and the various methods to improve gaming experiences for disabled people.

 

Accessible Toilets Revisited

Last week, I visited a ‘changing places’ toilet which made me want to write about accessible toilets again. The only other time I have been to one was in a hospital, so this was the first time I have been to one in more usual circumstances. The experience was largely positive even though it was just to see what the facilities were like inside. It had everything you would hope for as a wheelchair user, a wider door, lots of space, a ceiling track hoist, changing bench, and all the other usual features you would expect in a toilet. Other than struggling to find the room and not having a key with me, which meant a lengthy wait and a slightly irritable worker, it was easy and meant I could use it if I needed to.

The importance of these toilets should not be understated as they open up a huge number of possibilities when it comes to leaving the house. It allows disabled people much more freedom when going out because they are no longer restricted by how long they can wait to go to the toilet. Usually, I have to go back home if I need the toilet which means cutting short journeys or carefully planning where I go just to avoid that situation. Removing such a big restriction allows people in wheelchairs or with other disabilities to take part in what are considered normal day to day things much more freely.

There are just over 1,000 ‘changing places’ toilets in Britain which is a great improvement over the last 10 years but more still needs to be done, as an estimated 250,000 people need them and could benefit from them. Recently, there have been some cases in the news about providing more appropriate changing spaces for disabled people which has increased the profile of this issue and led to calls to install more across the country. This is a question of fairness and equality, and also about the dignity of disabled people. Despite certain laws being already in place, the provision of adequate facilities for the disabled remains pretty woeful. The Changing Places Consortium has done excellent work on this and continues to do so, so do check out their website for more information.

Finally, if you have a disability remember to ask for a RADAR key from your local authorities to give you access to a large number of accessible toilets in Britain. This information does not seem to be spread too widely so I wanted you to know if you didn’t know about it already.

Links:

http://changing-places.org

https://bbc.co.uk/news/uk-england-essex-42703081

https://bbc.co.uk/news/education-44210683

Clothing

What are the most comfortable clothes to wear as someone who sits down all day? This is an important question as it can be tricky to get into some clothes or be comfy in others, especially when your arms and legs are stuck in a relatively rigid position for many hours. I tend to wear bigger trousers that are more comfortable around the waist, but look for ones that are tighter around the lower leg so they are not so baggy. This can be a problem as the bigger waist you go the leg material also greatly increases and massive trousers can look a bit stupid. Joggers and lounge-wear seem to be a good option as you can get pairs that are quite close fitting around the lower legs but are comfy at the waist. I sometimes find clothes shopping in this regard quite hit and miss as I can’t try them on beforehand. Tops are not so bad for me because my shoulders are still flexible enough to get my arms in without pain so most options are open. I find that jackets are more difficult as they don’t stretch far enough for getting both arms in.

Another part to which clothes to choose is how warm they are going to be. I often feel the cold even when I’m outside on a sunny day, but sitting in too many layers feels bulky and sometimes hinders my ability to use the joystick on my wheelchair. Therefore, I normally wear things with long sleeves but not too thick, like jumpers or shirts. One thing I have bought that has been great especially when going out is a poncho. It can be worn over clothes without constricting your arms, is very warm and doesn’t look unsightly or out of place. Clothes like this that are flexible are therefore great options.

If anyone has some good suggestions for comfortable clothing. feel free to comment so others can see them.

Going out

I think it would be interesting to talk about going out as someone in a wheelchair. Although seemingly a simple and ordinary thing, it is not always as easy as people might realise. As with any journey or evening out there is a lot of planning involved, but for someone with a condition like Duchenne even more goes into just getting ready and leaving the house, as well as actually getting into and navigating around your destination. It’s never a case of just getting out of bed, throwing on clothes and heading out for instance. There are many more complexities involved and I think it is useful to explain them so that they can be understood more.

There are a lot of questions to be answered when it comes to going out that most people won’t see as particularly problematic. Is the venue accessible? What is the weather going to be like? How far away can you park? Are there suitable toileting facilities? These are just a few examples which are much more significant to plans for a wheelchair user. A question as simple as ‘can I get in?’ can turn out to be a nightmare, especially if, for example, an entrance isn’t quite accessible so you need to drive around outside in pouring rain and freezing wind to reach a rarely used side door that your chair can get through. The terrain is also something to be considered. Is the place your going too hilly or how uneven is the pavement you’re using? Furthermore, there is some anxiety that comes with going out as well. Will I encounter a situation where I feel embarrassed? Many of these problems can add up to make the entire experience of going out much more daunting.

For me, the main things that are problematic are being able to get in to a place and going to the toilet. Being able to access a venue is certainly one of my foremost concerns but currently, the toilet question is more significant as it’s about how long can I go without needing it because most places still don’t adequately cater to my needs. This has definitely restricted what I have been able to do for the past few years, and affected my participation of events with family, friends and university. This isn’t to say I do not enjoy going out but means that there is much less chance of spontaneity when it comes to doing things. You really have to think about things well in advance to make sure you can have an easy and enjoyable experience.

The above issues make going out difficult enough for disabled people already, without the added pressure of potential mistreatment by some venues. There have been a number of instances in the news recently that demonstrate that certain venues and places still treat disabled people with some disdain, and it is important that this changes as it will give people more confidence to take part and contribute more. I have also spoken before about accessibility, which still remains a significant problem.

A brief word on Stephen Hawking

Three weeks ago the world lost one of the greatest and most recognisable scientific minds, Professor Stephen Hawking. He contributed enormously to our understanding of the universe and his theories have helped to shape modern scientific thought. Despite having a massively debilitating disease, he refused to stop contributing to the world or working to unlock the secrets of the universe.

I have heard suggestions that the word inspirational is often overused when describing severely disabled people, but I believe it is exceptionally appropriate in the case of Stephen Hawking. In spite of becoming locked in his own body and confined to a wheelchair, he never gave up or shied away from the difficulties of life. Using his great intelligence, wit, tenacity, and determination, he never ceased to reach for and achieve his goals. Furthermore, he proved that disability does not define who you are or what you do, but instead gives you great motivation to always strive for success. It is possible for anyone to achieve success with proper support. Professor Hawking was therefore a brilliant example for what having a disability is like, immensely challenging but not something that stops you from living.

More people need to learn lessons from Stephen Hawking and take heed of the advice that he provided. If more disabled people could be seen and treated by society in the same way he was, it would do much to counter stigmatisation and discrimination, and create greater equality.

‘You don’t do handshakes then?’

I have heard this question, or certainly a version of it, a few times but have never really been able to give a good answer without feeling uncomfortable and embarrassed. When meeting people for the first time, there is often that awkward moment when someone sticks out a hand and waits for a shake (that I know isn’t coming), only to give a slightly bemused look after a long pause and a silence, as if to say ‘oh, he doesn’t shake hands’. By the time that awkward pause passes it feels too late to explain that I physically cannot. In those moments, I still find it difficult to articulate a simple phrase that the reason I can’t shake your hand is because my hands and arms don’t function properly.

Due to the weakening of muscles and shortening of tendons caused by Duchenne, your hands tend to curl up and lifting your arms becomes very difficult, impossible in my case. It wouldn’t take long to explain this to people and is something I should try to work on, but the situation remains very awkward and slightly difficult because some seem to assume you’re being impolite. I want to show confidence when meeting people and worrying about a physical greeting can knock that.

Despite this, there are some people who will unashamedly grasp whatever part of my hand they can but this is very rare and takes you by surprise. However, I definitely do not feel like people need to do this and I would certainly hope that nobody would be offended by just a verbal greeting. There are definitely other simple things that could be done in place of a handshake for those who can’t.

To give an example, I was very glad that at my graduation ceremonies Swansea University was incredibly accommodating in arranging for there to be an alternative to a handshake when I received the award on stage. Having the vice-chancellor take off his cap to me instead felt very special and removed any anxiety about having an awkward handshake moment.

I my experience, I feel that people are usually very thoughtful and conscientious towards people with disabilities, so shouldn’t feel put off if someone with a clear physical disability doesn’t shake your hand because in all likelihood they would if they could. This is definitely how I feel, I would love to greet people with a handshake and a physical interaction but unfortunately it’s impossible for me.

PIPs

PIPs (Personal Independence Payments) were introduced over the last five years to replace the older system of DLA, but this move has been rather controversial for a number of reasons. Most significant of these reasons for me was the fact that people with long-standing, incurable conditions that will not improve still required a meeting with an assessor to determine their eligibility.

For this reason, I found my own assessment for Personal Independence Payments strange considering that I suffer from Duchenne, a condition which does not get better or go away. Additionally, I had been receiving DLA for almost 10 years prior to being moved over to PIPs, so it was known full well what my condition was and that it was not going to improve. Despite these facts, it was still considered necessary for me to be seen by an independent assessor, who said herself that the visit was probably unnecessary for someone with my condition. Whilst I accept that people do need to be assessed to determine their need for benefits, when even the assessor is suggesting seeing you is a bit of a waste of time, you can question the reasoning behind the entire process. Also, even though it is unlikely that I will need to have my case reviewed for a long period, it seems that some people with similar or comparable disabilities will be assessed again and again which I consider to be rather ludicrous.

During my PIP assessment, I still felt nervous and uncomfortable when being questioned even though I know I have a severe physical disability, which now seems ridiculous upon reflection. Part of me felt as if I could trip myself up and get a question wrong, but ultimately it was fine and I was granted the enhanced rate on both components.

When it comes to filling in the assessment form, it is incredibly important to make sure you describe in detail all the difficulties you encounter in day-to-day living as it can affect the outcome of the assessment, whether you receive the standard or enhanced payment, or do not receive PIPs at all. Even if something seems insignificant, including it may help to put forward your case for receiving the benefits you are entitled to.

I heard an anecdote about a family with two sons who both had Duchenne, and when it came to applying for PIPs, one was granted the benefit and the other was denied. Hopefully this was resolved without much issue, but it demonstrates that the system can be rather strange in some cases.