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.

Writing letters

As I mentioned in my previous post, I recently wrote a letter to my health authority to highlight some of my concerns, and it turns out that letters do still have an impact.

The first reply I received was more of an automated defensive response to a complaint, which was not the aim of my letter, so I did feel a little disheartened. However, the next week I received a proper answer that addressed my issues more fully. The letter went through my questions in greater detail and gave me some reassurance that things are being done. Further to this, I found out that my letter has been discussed in a number of meetings between staff looking to implement more complete care plans for people with similar complex needs to mine and create easier pathways for hospital admissions. How much of a difference this will make is unclear, but it is nice to know that my letter got people talking and thinking about ways to improve patients care.

Since November, I have been to a meeting to talk about my own hospital experience and discuss ideas for ways to improve facilities in hospital for hoisting and toileting for people with disabilities like Duchenne. Again I do not know how much my input will contribute or lead to change, but it was refreshing to hear that people do want to improve services and respond to constructive feedback. I have also received a pack containing more detailed information about my condition that I could take with me should I ever be hospitalised that is also very useful.

Initially I thought that writing a letter would be a waste of time which is why I didn’t finish it for a few months. However, it did get hospital staff to look into and address things that could benefit many patients. Therefore I would say that if you do have concerns or ideas about your care from your healthboard, do raise them by writing letters or by other methods because you can make a difference.

Plastic Straws

I thought I would write a small piece about plastic drinking straws as it is a topical subject. Last month it was announced that a pub chain in the UK was getting rid of plastic straws entirely and replacing them. As someone who uses straws to be able to drink independently, the idea of removing straws from all pubs and bars seems quite extreme at first glance. I have read some articles about the plastic straw debate but none even acknowledge that straws can be very useful for people with disabilities. The comments on these articles would suggest that straws are just childish and unnecessary, but for me straws provide a means to drink easily. It is true that some straws are pointless, such as the ones with a 2mm diameter, but others can help a lot.

It is clear that we have a problem with single use plastics and replacing the straws with something more environmentally friendly is an obvious decision, so long as the replacements actually have an impact. There are a number of products, such as coffee cups, that are sold under a guise of being recyclable but are in reality not. I think that it’s as much the responsibility of manufacturers as that of the consumers to make changes to what materials they use. Whilst it is easy to vilify a single product, it may be better to address the current relationship with plastic wholesale to create a cultural shift, which would go further to change our predicament.

I would be totally happy if bars and restaurants changed all straws to reusable paper versions, but people shouldn’t entirely dismiss objects or ideas that could be useful to others out of hand.