Food I miss

Food has become more difficult for me to eat and the vast majority of my meals are now blended and put through a sieve to make it easier. Losing weight is a big concern for someone with DMD and has to be maintained. Not being able to eat whatever I want is a challenge, it’s not just the concerns about weight or choking but also that it can get me down mentally. However, we always try different dishes to see if they can be liquidised or made in a way that I can manage. It isn’t quite the same as eating something whole but it can still work.  I generally have a positive attitude towards this part of my routine but there are certainly foods that I miss eating, and I want to share some of them with you.

Rice – This may seem like quite a boring one but I did used to enjoy eating rice-based dishes like fried rice with vegetables or chicken and rice. It does not go through a blender very well and likely would not make something with the right consistency for me. Carbs like rice and pasta cause this problem so I steer clear from them.

Sausages – They were one of my favourite things to eat. It could be on the BBQ, a fry up, in the oven, sausage and mash, toad in the hole, these are all great things that I really enjoyed. I definitely crave a sausage sandwich with ketchup on occasion. However, I do still eat sausages as part of my diet albeit in blended form as it works well in soups or casserole.

Fish – This is a more difficult thing blend and is much less enjoyable after so we tend to eat it less. We used to eat fish a lot and I would normally pick it when we went to restaurants. I really miss fish and chips as well. But again, this doesn’t mean that I can’t eat it at all in different ways. I have had fish in different sauces and also as a mousse so it can work even though it isn’t quite the same.

Paralympics

The Paralympics is on again and I have enjoyed watching the games so far. The Paralympics is an excellent platform that really shows off the incredible capabilities of people with disabilities. The athletes display an endeavour and strength that doesn’t fail to be inspirational to me as a disabled person, and I find it brilliant. Being able to watch so many people with such a diverse set of disabilities gives others a chance to see themselves within the games and say “that could be me” or make them want to try something new. It is a positive story about inclusion and how disability should be seen, not as a problem or a hindrance but as something to be made visible and celebrated. The games demonstrate that having a disability does not limit a person’s ability to achieve and strive, even if it may present additional challenges in their daily lives.

Despite all the great things that the Paralympics brings such as exposure, however, disabled people are still too often forgotten about or mistreated in society, or seen as second-class citizens, which has been highlighted further during the Covid pandemic. The Paralympics acts as an excellent reminder and a big positive for disability but it should not be the only thing that creates a discussion. It should not be the one time every four years that there is a focus on disability awareness, advocacy, and social change. Governments have to be the ones to act to reduce discrimination or increase funding, for example.

There are many different events but some of my favourites have been the wheelchair rugby, boccia, archery and swimming.  Watching swimmers with physical difficulties in the S10 category such as no limbs going so quickly is nothing short of remarkable in my eyes, and boccia allows competitors with a range of abilities to all compete using different equipment so is also fantastic.  Team GB have won numerous medals across many sports so far (80 and counting) and there have been some truly great moments for me. GB became the first ever European team to win gold in the wheelchair rugby, Hannah Cockroft won the T34 100m with a new world record, and Lee Pearson won yet another Equestrian medal, to name but a few. Additionally, I hope that David Smith will be able to win in his gold-medal Boccia match to become the most decorated British player tomorrow.

Hotels and Accommodation – Disability friendly rooms/ accessible / wheelchair friendly

In this post I am going to talk about how accommodation (hotels, guest houses, etc) advertised as accessible and disability friendly is not inclusive for all disabled people.

Oftentimes, accommodation is presented as accessible or ‘disability friendly’ when it is not. Many hotels, holiday homes and cottages are described as fully accessible when they lack certain facilities that are necessary for people with severe disabilities to use and be unrestricted. When searching for somewhere to stay in the UK, there are certain facilities and features that I need which are largely lacking. I find myself checking off criteria on numerous websites only to find a major problem. On the plus side, features such as ramped access, wide spaces, en-suite bathrooms and grab rails, are included, but for the most part two vital pieces of equipment are missing. The most important piece of equipment for many with physical disabilities is a hoist, and not enough places provide them. A powered bed is also a very important need but one I find secondary to the hoist as it is possible to cope without. Therefore, these places are not satisfying the needs of all disabled people so should not really claim to be accessible for all disabilities.

For many people with severe physical disabilities like myself, grab rails and ramps are not enough to make a room truly accessible. Because of my limited function, I require the hoist so I can use the toilet, wash, get dressed and go to bed, and far too many places don’t have this vital equipment. Either mobile or ceiling tracked, having a hoist is the make or break issue when trying to go away anywhere. Though mobile hoists are welcome, ceiling tracked hoists are so much more convenient and easier to use, but very few places install them. As a side note, mobile hoists can sometimes be restrictive due to the size and can be blocked if a bed is too low to the ground, but ceiling hoists avoid any such problems.

Hoists open up the accommodation to a much larger group and allow people with disabilities to travel and participate in ‘normal’ activities that everyone should have access too. Furthermore, the equipment does not break the bank in terms of cost, it can be locked when not in use, and doesn’t prevent anyone from staying.

I don’t think that it comes from a place of malice but one of lack of knowledge. If more people are made aware of the issues they can respond to them. Ideally, many more places would have at least some rooms with ceiling track hoists and electric powered beds. I think that there may be some benefit for people in charge of accommodation having more help and guidance, perhaps even from the government, to ensure everyone can indeed access such places.  

When I went holiday in 2018, it was so nice for me and my family to be able to go somewhere where my needs were fully taken care of. The owner had experience with a disabled family member so had installed a ceiling track hoist into a bathroom and an adjustable powered bed. It gave us so much freedom as there was no fear of not having somewhere to get changed or sleep comfortably.

Universal Credit – My experience

Recently, I started claiming for the Universal Credit benefits. Applying for Universal Credit was quite a saga for me and my family, and I want to share my thoughts and go through some of the parts of the process. The application can be difficult to navigate in places and there are several obstacles to overcome as someone with Duchenne before you can receive UC benefits. It took nine weeks from the time I applied to when I received my first payment. Fortunately, I was not in a situation where I desperately needed the money but this could certainly be a problem for other people if they had to pay for carers or other necessities.

In order to begin claiming you need to create an account. This seems straight forward, but I encountered an issue at the very beginning with proving my identity. I needed three items and there were limited choices of documents to use as proof on the UC website. I do not have a driver’s license or my own mobile phone contract for example, so someone had to come to my house in order to prove who I was. To further complicate matters, my father is authorised to act as my appointee (to help me with things like signing documents) so we also needed to prove this too.

After setting up an account, there are several forms to fill in and documents to send in order to get the ball rolling. One problem with the website is there is nowhere to select what specific benefits you are applying for which seems to unnecessarily complicate the claims process. Once I began the claim, I needed proof of my disability. It was necessary to provide a note from a doctor to prove what medical condition is preventing you from working. I then had to fill in the ‘work capability assessment’ form, a very long form detailing your everyday activities and what you can and cannot do, within a month.

Despite already going through the process for Personal Independence Payments, which entailed filling in a very similar form about day to day living, and having qualified for the higher rate, there is no way to show that my disability has already been verified by the Department of Work and Pensions. As Duchenne does not improve and has no ‘cure’ currently, it should not need to be assessed twice or more. Therefore, I think it would be good if the DWP could check your history and check medical conditions before asking for the same documentation multiple times.

I had to complete an interview over the phone as well to go through a further assessment. Completing the forms and sending the doctor’s note before this interview turned out to be very useful as I avoided having to repeat certain answers about how you are disabled and what problems you have. At the end you agree on certain commitments such as attending medical appointments, and then I began receiving payments.

Sometimes there is a need for a face to face interview, but my answers on the assessment form were sufficient to show that my condition qualifies for the benefit, meaning I was placed into the ‘limited capability to work’ group without having to be seen.

Hopefully this post gives people a better idea of the process. Please leave a comment if you liked it.

Assistive Tech & Environmental Controls – Possum

Assistive technology and environmental control systems help disabled people to use appliances within their homes. I have an environmental control system from a company called Possum, which provides various pieces of assistive technology. I was referred to Possum by an occupational therapist with the NHS, and the company came out to install a system. I have a Vivo which is akin to a smart speaker. It performs similar functions to smart speakers but it works via infrared rather than through the internet, and with a micro button (a clicker in my case) which is connected directly to the Vivo or to a wireless receiver box.

The Vivo is very useful as I can use a single button to perform multiple tasks at home fully independently. I can turn on lights, use the radio, answer an intercom, and phone people. It also allows me to call for assistance and help when I need it. Furthermore, it can be programmed based on your needs such as controlling a television or even opening curtains, or your front door should you want to get the tech installed. In addition to the Vivo, I have a hand-held pager as another way to communicate with my parents as I can ring it through the Vivo system.

Possum have been very helpful when it comes to support, and they come and service the product each year and deal with any problems. I have had it for about 2 years and I would really recommend checking it out if you are interested. It definitely gives me more independence and it is very simple to operate and maintain.

An unexpected holiday

At the end of September, I went on a short holiday with my family to a cottage close to where we live. Though it may seem unremarkable, it was probably the first time in 10 years we have been away from our house for an entire week, mainly due to the difficulties of going away as a disabled person. The holiday was unexpected in that we only found the location by chance. We had been looking for somewhere to stay which met all of our requirements for some time (mainly accessibility), but my sister happened to come across a place called Bramwood holiday home after some research on the internet. Despite not being very far from where I live, the change of scenery and easy access made it a great place for us all and we really enjoyed our time away.

Holidaying is definitely not an easy thing to do when you have complex needs, but the place where we stayed was fully wheelchair accessible and had a bedroom kitted out to accommodate a severely disabled person. The room I stayed in had a ceiling track hoist through into the bathroom, a profiling bed and plenty of space to move throughout it in my wheelchair. The rest of the cottage also had plenty of room to move around in and there was ramped access around the whole place. An added complication of going away is that we had to take all of my equipment like NIV and cough assist etc., but there were plenty of points to plug things in.

I found the overall experience to be excellent and I felt very comfortable within the environment. It was nice to be able to go somewhere where there was no fuss about bringing your own mobile hoist, or not having enough space, or worrying about whether it will be possible to use the toilet easily. It would be fantastic if more places were created which looked to accommodate and cater for all people with different disabilities. There are so many people who want to travel to different places but a lack of facilities is preventing them from doing so. More inclusivity and availability cannot be a negative, so addressing this problem would therefore be in everyone’s interest including disabled people, families and tourism industries.

 

A whole year of blogging

Unbelievably, it has been a whole year since I started writing this blog. It is amazing to think how quickly time goes, especially as I became 25 this year. I have very much enjoyed writing and posting about various things over the year and I hope some of the posts have been useful and provided some interesting points of view. I am so pleased with the number of views I have received so far and I am eager to increase that. The blog has nearly reached 1,000 views and my aim is to keep increasing this as much as possible.

I want to thank everyone who has taken the time to read any of my posts and to those who have liked the things I have written. I look forward to writing more about issues related to disability and continuing the discussion about Duchenne Muscular Dystrophy.

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.