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.
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 (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.
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.
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.
Many places in the UK still have a problem with wheelchair access that could very easily be solved. Wheelchair accessibility does not just relate to getting into buildings but also to pavements, road crossings, doorways and stairways. There are plenty of minor steps that could be taken to alleviate a lot of the struggle for many people. I have been in a wheelchair for about 13 years and have visited plenty of places that were a complete pain in the backside the gain entry to. Getting wedged on the threshold of a restaurant, being pulled back out and re-entering through a little side door certainly isn’t a dignified entrance I can attest.
I find that one of my main personal issues is feeling embarrassed and nobody wants to be stared at, so getting stuck or sitting outside a closed door in the rain doesn’t help you avoid it. I think just like most people I want to have a sense of normality, being treated just like anybody else, and having proper accessibility really does help with that. I think it would be unreasonable for me to expect the installation of elevators and automatic doors in every single place I may want to go to, but it is not beyond the realms of possibility for places to add such accessories that improve access for a reasonable cost. It’s true things are improving but still very slowly, and whilst ‘push to open’ buttons are useful for some, I can’t use my arms to press them.
For example, many establishments could build ramps or have access to temporary ramps to get over a curb or a step in front of a building. Ramps can also benefit the elderly, people with push-chairs, or others with mobility issues, not just those in wheelchairs. I recently used a small portable ramp to get into a restaurant and I’m certain it didn’t break the bank. The same can be said for pavements and points to get on and off them. Many pavements in the area I live are often uneven or too narrow and in some cases completely non-existent. Also, oftentimes the curb drops are too high for my wheelchair ‘curb-climber’ to tackle and I’m pretty sure no driver wants to see a wheelchair user forced to drive along the road. The drops could be lowered or changed to better accommodate wheelchairs.
Anyway, there are plenty of measures that could be implemented simply and relatively cost-effectively to improve access for wheelchair users. Food for thought for urban designers.
Image sourced from Pinterest
There are plenty of very useful pieces of software and appliances that can really help with day to day activities. I am in no way an expert with these technologies but I wanted to list and describe a few of them I have used. I wish I had known about some of them sooner because they are incredibly helpful and could have really benefited me. Accessibility for technology has improved significantly in recent years and more people should know about what’s out there.
Dictation software for the computer.
The first time I became aware of this software was when I started university. The uni kindly offered me a copy of Dragon Naturally Speaking, which really was a life-saver when it came to writing essays, doing coursework, and preparing notes. It also allowed you to control more functions on the pc through voice commands which is again very helpful. This could have been even more useful to me if I was introduced to it earlier because I had several pieces of coursework for GCSE and A-level that required lots of writing.
R-net bluetooth hardware and software can be added to your wheelchair allowing the joystick to be used as a cursor on your mobile phone or tablet. I was able to get one through the NHS and it has allowed me to easily operate my phone. They also came up with a way to attach the phone to the chair using clamps. I never used to be able to use my phone very easily but connecting it to my chair has allowed me to use a phone like anybody else. You can get the software for both android and apple devices so you can use your preference.
Equipment for gaming
Playing games on console and pc is one of my favourite things to do but it gets a lot more difficult when you can’t fully use your hands. In order to deal with this, I have used several bits of kit to make it easier. I have used something called a Cronusmax to link a controller to my pc in order to re-map the buttons and make gaming easier. I have also used micro switches connected to a interface to allow for easier button pressing. In terms of gaming, there are now loads of things to assist you if you are disabled so make sure to search for some of these.
This is a short list and it is by no means exhaustive but the above items have really helped me so I hope you can find something that works for you.
Let’s talk about “disabled toilets”. Using the toilet is something that we all do, so why do we have public facilities that only cater for some people. Even though there are plenty of supposedly accessible “disabled toilets” in many public places, they are still totally inadequate for people with severe learning and physical disabilities. Adding grab-rails to the edge of a toilet is all well and good, but if you can’t even use your arms, or stand, or get dressed independently, suddenly the rails become entirely useless.
Accessible toilets should incorporate all the things that people with disabilities really need. This includes adequate space, enough to allow for a wheelchair to use its full turning circle as well as at least two more people, the necessary equipment, including a ceiling-track hoist and changing bench, and meaningful opening times. Some disabled toilets are actually locked during the day so people have to search for someone who may or may not know where the key is.
In Britain, premises and councils are required by law to provide accessible toilets but currently it would appear that in many cases only the bare minimum is done to comply with its directives. In my opinion, I do not believe that the law goes anyway near far enough to provide properly for severely disabled people and more should be done about it. I know that discrimination is a word often bandied about, but in this case it seems justified. There is an excellent campaign in Britain called Changing Places that aims to install facilities that are fully accessible and usable for people who cannot use standard “disabled toilets”.
When visiting public places, (including hospitals) I have often been told about the availability of the “disabled toilets” by helpful members of staff who are completely unaware that I am unable to use the vast majority of them. Without going into too much detail, to go to the toilet I have to be hoisted onto a bed or toilet depending on the circumstances but currently this is impossible in most accessible toilets. I have also fallen foul of a locked disabled toilet back when I had some more mobility, which was immensely frustrating to say the least. As I have mentioned previously, going out requires lots of planning so not being able to go to the loo without going home can really impact on your life.
People already see the disabled toilet as an ordinary facility, so why not just make them a bit larger and get the equipment in, allowing everyone to enjoy the same the experiences without as much hassle.
As I have mentioned before, Duchenne, and all other disabilities for that matter, come with a massive set of challenges. They are very debilitating and this not only limits what you can do but it also affects how you feel. It is for that reason that I wanted to discuss motivation and the importance of positivity.
I think that being positive and motivated to succeed can enable you to overcome adversity and achieve great things. It sounds like an obvious suggestion but many people struggle mentally with motivation. Thinking positively and seeing the bright side of things can really help to deal with the difficulties of everyday life and spur you on. Losing your ability to walk or being unable to attend certain events can get you down, but focusing on what you can do will drive you on. I think that more people need to be reminded about how strong they are, and told not let what others think negatively impact upon them. The more you push yourself, try hard and enjoy what you’re doing, the more your efforts will be recognised and rewarded.
I have always been a very highly motivated person and that has influenced what I have been able to achieve. I have pushed myself throughout my life, especially academically, and this helped me to get excellent grades and gain two university degrees. I would say that I hate to fail and this has made me strive to be the best I can. I am also fortunate in that I have never really found myself feeling sad because of my disability and I am rarely bored but I believe this comes down to a very positive outlook. I think motivation therefore affects how much you get out of life and your happiness too, and remember to have fun and enjoy yourself as well.
I will be honest and say that living with Duchenne isn’t always a bundle of laughs. There are plenty of problems and difficulties that have a constant effect on everything you do in your life. Whether it’s falling at a young age, going off your feet into a wheelchair, getting out and about, going back and forth to hospital, or doing simple daily activities like dressing or toileting, life isn’t without its problems. It takes a long time to get up and be ready for the day, and going out takes much more planning. This is not to say that life is not fun or enjoyable, far from it. I enjoy going to the cinema or to the pub with friends and I never feel down about what I can’t do. Life doesn’t just stop with a disability, so that’s why I think that having a very positive outlook is very important.
Despite the difficulties, your disability should not limit what you can do. Yes, Duchenne is a pain in the backside but it is something which should not hold you back. For example, I am proud to be able to tell people that I have been to university and attained both an undergraduate and Masters degree in History. So many young men with Duchenne can and do achieve many things and they excel at what they do, so I would be loath to see others held back by fear or stigma. I have not always been the most confident person but most people are always helpful and understanding so there is no reason to limit yourself. It’s also important to not worry about what other people think about you.
I am certainly very fortunate to have had such a fantastic support network of friends and family throughout my life and that has enabled me to achieve a lot. Definitely try to do as much as you can and enjoy life to the full.