[The content of this blog is my opinion, so I’m not either endorsing or condoning this mobility technology]
After reading this interesting article about the WHILL wheelchair, I decided to further investigate by visiting their website. Unsurprisingly I found the usual problems regarding the product design of disability technology and societal constraints of normality.
Often, the designers of wheelchairs (or disability technology) are able-bodied, so the product is created on an assumption of need rather than through the involvement of disabled people.
This is the trap that WHILL has fallen into with 3 able-bodied designers creating the WHILL for a disabled friend who was embarrassed to venture outside in his wheelchair. They wanted to create a mobility device to help disabled people feel confident.
Hold on a second. As a fellow wheelchair user, the problem with confidence isn’t with the actual wheelchair but the anticipation of accessibility problems in the world around us. I already feel independent and confident sitting in my wheelchair.
This inherent ableist thinking viewing people with disabilities are ‘wrong’ or embarrassing needs to be changed not just hidden with sticking-plasters of new technology. A wheelchair does not need to be considered as something to be shunned, society needs to accept that wheelchairs are useful tools for disabled people to live their life.
They redesigned the ‘wheelchair’ from the ground up. Get this, with important features like colour customisation, foldability, an app to control your wheelchair remotely and seating the rider upright so they feel like they’re controlling a vehicle.
Apparently, the WHILL has been designed with the user in mind. However, who has ever wanted to feel like they’re controlling a vehicle when sitting in a wheelchair? It sounds like an interesting concept but clearly highlighting the able-bodied designers’ assumption of requirements.
Redesigning a wheelchair is not completely necessary as some options currently available are advanced already.
The rhetoric that it has been designed with the user in mind is quite arbitrary as disability has a vast scope of people with varying needs. Define your users. This wheelchair isn’t designed for people with severe muscle weakness as there is no headrest or seating support.
Thank you for reading and please join in the conversation at @UncannyVivek
After watching this interesting TEDx talk, I pondered this question ‘Why are aliens ignoring us?’
Aliens want to arrive on a planet populated by intelligent peaceful lifeforms with less Plastic Pollution in the oceans but enough flexible Plastic Straws for their anatomy. Otherwise, this planet will not be accessible to them.
Oh boy, I’m finally sharing my opinion on the present plastic straw crisis negatively impacting independence for the disabled population.
I agree that we must care for our wonderful planet and live in harmony with the animals sharing Earth with us. Plastic pollution is a gigantic problem of our time, society needs to be more mindful of their effect on this unique planet.
I’m pleased to hear that businesses, supermarkets, Starbuck’s etc are cutting down on needless plastic products. Plastic straws should not be classed as an unnecessary plastic product. In the grand scheme of things, plastic straws are only 0.03% of global plastic waste. We need to target single-use plastic wrapping on sweets, chocolates, glitter, balloons & e-cigarettes etc
Focusing on individual products takes our focus away from the necessary discussions on global waste management. After our oceans are clogged with plastic maybe we can shoot our plastic waste into space.
Disabled people are trying to live an independent lifestyle in a society and environment that isn’t always fully accessible to them. Nutrition, hydration and keeping healthy is vital in life, we all are supposedly meant to drink 2 litres of water daily.
Interesting question, how do you independently drink if you cannot either lift your arms up or bend down? The answer is a plastic straw (or living in space).
You might suggest that there are other types of straws available: from metal, paper, acrylic to wax.
- Paper straws disintegrate in a way that is dangerous for people with swallowing problems.
- Stainless steel straws are not safe for use in hot liquids and are difficult to hold with just teeth.
- Glass straws can have injury risks and are expensive.
Straws that are straight are difficult to use because through experience the cup can easily tip over. This is not a big issue with cold drinks, but it is extremely dangerous when dealing with warm drinks. I require a straw which has the capability to bend or deform so that I can grip it easily with my teeth without fatigue.
For me, the biggest benefit of a straw is that I’m in full control of the amount of liquid I’m sipping. Without this ability of the straw, I would easily choke whilst drinking because of my weak swallowing muscles. Who would want to choke in public? The embarrassment would not be the problem for me but the terrible consequences of potentially getting a chest infection leading to an unnecessary hospital admission.
You cannot call yourself an accessible restaurant if your paying disabled customers cannot access a drink, you don’t expect customers to eat their meal without any cutlery.
The problem with the alternative straw options is that they do not have the necessary attributes of a plastic straw. My solution to the plastic straw ban is simple, venues should stock small quantities of plastic straws to be available on request for disabled consumers. Also, if possible disabled people should try to re-use plastics straws at home.
Please don’t alienate the disabled population or the aliens waiting to arrive on an inclusive accessible planet.
Spoiler Warning: I will be talking about the story in To The Moon.
To The Moon is a 16-bit Indie adventure game developed by Canadian game designer Kan Gao. Games like this are not usually on my radar but I’m glad that I embarked on this emotional journey with To The Moon.
To The Moon is set in the future, you control two doctors who explore a dying man’s memories through technology in order to reconstruct them to fulfil his last wish. The 16-bit style is reminiscent of classics like Legend of Zelda however To The Moon has no combat mechanics or RPG elements only some puzzle solving tied into the story.
The story intelligently tackles philosophical and emotional themes, which are rarely spoken about. Usually, AAA games like Far Cry 5, Doom etc are there to disconnect the gamer from their violent actions however To The Moon connects the gamer with their emotions. Creating a platform to think about their lives and the themes of mortality, love and existentialist thinking.
Sensitive Topic Warning: I'll be speaking about living with a disability
Living with the terminal condition Duchenne Muscular Dystrophy has made me question my own mortality and trying to answer many existential questions. Last summer when I was at home my heart stopped, as you can obviously tell (because I’m typing this) I’m still here and earlier this year I lost my friend David Mayes. To The Moon reminded me of the tough questions I decided to answer by thinking about my wishes after I’m gone.
To The Moon has the perfect music to make you genuinely ugly cry, the subtle piano notes and 16-bit art style transported me back in time to my childhood and having to stop playing the piano due to my muscle weakness. Discovering that I had an uncurable life-limiting condition was extremely tough, like Johnny there were parts of my memory with repressed feelings of anger, depression and guilt. For a long time, I wouldn’t face those parts unless I could reconstruct those memories.
What I loved the most about To The Moon was that the story did not rely on negative depictions of Autism, it shows that autistic people can become adults and find love. Finally, I was worried that the story would change into the character River wanting to reconstruct her memories and ‘cure’ her autism. Many games seem to think that having a disability means that you want to be fixed with technology or powers (i.e. Wolfenstein II: The New Colossus).
To The Moon reminds me of the equally profound game What Remains of Edith Finch, both games focus on mortality and death but through experiencing characters memories you realise that the inverse is true, these games are focusing on life.
Games like these create lifelong memories by tapping into your heart, not your mind.
On the 18th June 2018, I was Invited by Michael McGrath to attend the Muscle Help Foundation’s flagship Porsche Muscle Dream Programme. The role of a Muscle Ambassador for the Muscle Help Foundation is a big responsibility, but it also has some incredible perks.
For the 8th year running, 8 beneficiaries and their families had the ‘Muscle Dream’ experience at the luxurious Whittlebury Hall Hotel and the Porsche Experience Centre at Silverstone. These beneficiaries were aged between 10-16 and were true petrolheads, harbouring dreams of speeding around Silverstone in a fast car & meeting their favourite driver Lewis Hamilton.
The Muscle Help Foundation had meticulously planned every single second of this amazing experience, taking the beneficiaries (‘Muscle Warrior’) and their families on a journey filled with surprises, scrumptious food, gifts & even factored in time to watch England win against Tunisia.
After refreshments in the Silverstone Bar, we were led to the Whittlebury courtyard were Michael McGrath revealed a Porsche and Aston Martin. The fascinating part of that reveal was initially watching the supercars driving up a ramp, through a corridor in the Whittlebury Hall Hotel and into the courtyard. It was difficult to prevent the bottom of the supercar scraping against the ramp but somehow, they managed it. I remarked tongue-in-cheek that “this reminds me of the access issues faced by disabled people when trying to enter inaccessible buildings.”
During lunch the beneficiaries’ nomination applications were shown, it illustrated to me how important the ‘Muscle Dream’ programme is in bringing hope and happiness to the prospective ‘Muscle Warriors’ and their families. Living with Muscular Dystrophy can make hope seem impossible especially to newly-diagnosed parents.
As a Muscle Ambassador, Michael McGrath introduced me and I was given the chance to speak during lunch. The aim of my speech was to share my life story to demonstrate that you can lead a happy, active and fulfilling life as an adult living with Duchenne. I spoke quite openly about how I’ve evolved through my failures, worries and the great opportunities I’ve had through charity work. I did end the speech with the cliché phrase, “I focus on my ability, not my disability” but in this case, it fits perfectly.
We all drove in convoy to the amazing Porsche Experience Centre at Silverstone, we were then greeted by an awfully expensive car park filled with every type of Porsche that you can imagine. The ‘Muscle Warriors’ had time for pictures, interacting and building the excitement through the briefing. We learnt the important phrase for going faster which was “Light it up!” The beneficiaries just couldn’t wait to finally sit in a Porsche, they had an amazing time.
I was looking forward to experiencing a ‘Muscle Dream’ in action, it turned out that it was not just a transformative event for the beneficiaries or their families but also for me. The Muscle Help Foundation ‘Muscle Warrior’ volunteer team made the whole event special and a memorable day for everybody involved.
The chief volunteer coordinator Lydia Drukarz was amazing organising everything in the background and helping the 30 Volunteers each with different roles on the day. Each ‘Muscle Warrior’ and their family were allocated a dedicated Volunteer host throughout the day. The many volunteers included: Photographer Gary Luff, Drone Operators Dan and Jason Smith from Cinecloud, Presenter Sarah Lowther, Gemma McGrath and the rest of the great team. Special thanks to Mel Ridgers, who provided the Aston Martin displayed in the courtyard, but also arranged for the signed Lewis Hamilton photos, the limited-edition winner’s tee-shirts and those amazing mounted and personalised car parts!
My highlight of the whole event was when I received a hand-drawn picture at the end of the event from a lovely beneficiary called Mikey.
On the 7th June, I was invited by Michael McGrath to attend the prestigious 2018 Inspiring Herts award ceremony as the Muscle Help Foundation (MHF) was shortlisted as finalists in the Family Business category.
It was a black-tie event held in the beautiful St Albans Cathedral, the mix of traditional ancient features and modern technology was exquisite. St Albans Cathedral has fascinating Medieval wall paintings & Nave Statues. During the evening coloured lights spun around the ceiling, linking in with the gorgeous stained-glass Rose Window.
Even though we didn’t win the Family Business award (we will win next year) it was such a great night getting to meet more passionate members of the MHF family – Sarah Lowther & Gemma McGrath.
It was the first time that I could use my Muscle Ambassador business cards, so I wanted them to be easily accessible rather than hidden in my bag. The solution was to place them under the MHF wristband positioned on my left armrest!
This was the second event which required the rental of a tuxedo, bow-tie, shiny black shoes & a burgundy pocket square (matching the MHF colour). I had already visited Farley’s Wedding Suit Hire shop in Oadby, so I rented the same tuxedo making it much easier. The shop is wheelchair accessible with very helpful staff. Getting a suit jacket fitted is fairly difficult for me whilst sitting in a wheelchair as I struggle to put a jacket on at home due to having stiff shoulders & I can only try the suit trousers at home.
I look forward to the next Muscle Help Foundation event – the annual Porsche Muscle Dream Programme at Silverstone.
The technology industry leaders Microsoft recently announced the ground-breaking Xbox Adaptive Controller (XAC) designed directly for gamers with limited mobility. As the Muscular Dystrophy UK Trailblazer gaming consultant, I was lucky enough to put the controller through its paces to see if it could adapt to my severely limited motor functions.
I have previously written about the difficulties I have faced with gaming due to the relationship between my condition and lack of controller adaptability (click: Disability & the Gaming Industry). As I mentioned in Keith Stuart’s Eurogamer article (click here), “I ended up watching Youtube game walkthroughs of games I wish I could play. It was heart-breaking being reminded of my disability when gaming is meant to be inclusive.” My first experience of having to adapt my controller was through the charity ReMap UK and recently with Special Effect who adapted a controller with ports for 4 switches and lighter-press buttons.
The Muscular Dystrophy UK Trailblazers, a UK-wide network of young, disabled campaigners led by Lauren West recently published the ‘Changing the Game’ Report calling for the gaming industry to consider the importance of gamers with all abilities. This report perfectly fits with Microsoft’s ethos of inclusive design, an approach that involves identifying potential barriers and designing products for people with a wide range of abilities.
“Microsoft’s new Xbox Adaptive Controller is a welcome first step towards a more inclusive video gaming culture. It will make a real difference, particularly to people with a progressive muscle-wasting condition.”
– Nic Bungay (Director of Campaigns, Care & Information for MDUK)
Designing technology through the lens of inclusivity is absolutely imperative during the development of a product. Many people with disabilities are limited by the technology around them rather than their lack of ability. For example, imagine playing Super Mario World without a jump button, Gears Of War without a cover button or the Uncharted series without ludonarrative dissonance – it just wouldn’t work. Accessibility is about the creation of gameplay options to improve enjoyment for everybody, so without a jump button Super Mario World would become a limited inaccessible experience.
Microsoft understood this issue, so they decided to work directly with disabled gamers to create the Xbox Adaptive Controller. On the 9th of May, I was asked by Nic Bungay who has tirelessly worked with Microsoft alongside Lauren West (Manager of the Trailblazers network) to offer me the opportunity to test the Xbox Adaptive Controller. I had to confess to Microsoft that I didn’t own an Xbox One but a PS4, so I had never held their controller before. I was initially doubtful that I had the ability to hold the Xbox One controller let alone press buttons to play a game. My doubts became reality, as I found my hands could not operate the regular controller and I struggled to press the big A+B buttons on the XAC. I think that the Microsoft team were initially unaware of the full extent of how my muscle weakness affects gaming.
My tests on the 14th/15th May were extremely positive, the issues that I faced on the first test were taken on board and ideas were explored. Hector Minto (Microsoft Accessibility Evangelist) and the Microsoft team brought different switches for me to try and mounts to attach them to my wheelchair. The XAC provides agency to disabled gamers by giving you the flexibility to experiment and ultimately discover your optimal set-up.
I played Forza Horizon 3 and my set-up was: the left analog stick of the Xbox controller had a velcro strap to keep my finger on it whilst steering the car. The controller was connected using the brilliant co-pilot accessibility feature. Connected to the Xbox Adaptive Controller I had a chin switch to accelerate (RT) and right head switch for braking (LT) mounted on my wheelchair. I had two knee switches stuck to the bottom of the table to press the Rewind button (Y) or Challenge button (X). I navigated menus using the big A+B buttons on the XAC positioned under my right hand. It did take time for me to acclimatize to the new set-up. Due to my limited energy levels, it was slightly fatiguing for me to use the controller, as I usually do not use the muscles in my chin or knees. I can see myself mastering the setup in the future which gives me immense hope to tackle more games. Cyberpunk 2077, anyone?
During testing, I was interviewed during gameplay about the Xbox Adaptive Controller by BBC Radio 1 Newsbeat’s Gaming Reporter Steffan Powell (If you want to watch the full BBC interview then click here). I was really engrossed in Forza Horizon 3, at one time I was talking to Hector Minto and I remember saying “Let me overtake this guy”. That remark really demonstrates my enjoyment, empowerment and capability to play competitively.
“At Microsoft, we’re aspiring to have a living, learning culture with a growth mindset that allows us to learn from ourselves and our customers.” – Satya Nadella (CEO of Microsoft)
The wonder of the Xbox Adaptive Controller is that you have choice and freedom to fit the controls around your ability. Before I tested it, I was completely unable to play using the regular controller but with the perfect switch setup and co-pilot, I managed to win multiple races. It was an amazing experience to hold a controller which I never thought would be possible for me to use. The Xbox Adaptive Controller really does make the impossible possible, it will empower disabled gamers throughout the world.
The Xbox Adaptive Controller is a watershed moment for the gaming industry, Microsoft has made the first big step to change the paradigm and make gaming inclusive. I hope that with the imminent release of the Xbox Adaptive Controller and the MDUK Trailblazers ‘Changing the Game’ report, it will give Nintendo and Sony the push to follow in Microsoft’s footsteps. Lauren West (Manager of the Trailblazers network), comments that “What we want to do now is challenge Microsoft and the wider industry to continue focusing on the needs of disabled gamers and create a much more positive and inclusive gaming environment for everyone.”
It’s exciting times to be working with technology companies, their eagerness to learn from people with disabilities will evolve the future. Inclusive technology is not just a dream but an achievable reality.
“We want to build intelligence that augments human abilities and experiences”
– Satya Nadella (CEO of Microsoft)
Welcome to Inside Vivek: a post for Mental Health Awareness Week
Writing about my journey through life with mental health has been a cathartic and liberating process. I’m usually quite hesitant to share my mental health issues, as I’m the type of person who likes to deal with those issues myself.
Speaking honestly regarding #MentalHealthMatters is crucial to facilitate change by breaking down unhealthy societal barriers. This topic is fairly easy to ignore as your mental state is not clearly visible. Similar to an iceberg, 90% of your mind is hidden underneath the surface.
We all have our demons to face, challenges to overcome and our minds to control. Unfortunately, many people have more hardships to cope with in life. A common misconception is that disabled people always have mental health issues connected to their disability, this viewpoint is (generally) incorrect. Disabled individuals face the regular challenges of life along with additional environmental barriers, physical limitations or lack of disability awareness.
Mental Health is not fixed to a singular point in time but a flexible continuum, I consider the baseline emotion to be stability. I try to keep my emotional state quite stable to prevent dramatic fluctuations either up or down. Feeling Anger, Anxiety or Excitement is physically tiring for me. I don’t have a large energy store so I have to efficiently manage energy levels. This does not mean that I’m an emotionless being (like Spock from Star Trek) because I do feel joy, excitement, sadness, anxiety & (at certain times) anger.
My tip for a good coping strategy or for staying positive is (I know this will sound clique) but you need to have a good sense of humour. Finding a glimmer of ‘funny’ in a terrible situation has helped me well over the years – a laugh is much better than feeling bitter or angry.
“Life is too important to be taken seriously.” – Oscar Wilde
Life has been quite challenging for me emotionally, psychologically and physically. On reflection, those earlier challenges have taught me invaluable lessons on emotional resilience, compassion, positivity, independence and self-respect. Without living this life, I would never have grown into the positive and confident man I am today.
I was born with the bleeding disorder Haemophilia so life was already a struggle, I had to be careful not to fall on toys or hurt myself. When I began to show signs of weak muscles I was referred to the neuromuscular consultant in Leicester who for 6 years wrongly diagnosed me with a curable condition called Polymyositis. It was a nightmare for Mum to battle with the consultant to find out what was wrong with her son. I was correctly diagnosed at age 9 which allowed me to access the correct care and finally receive a wheelchair. It was tough coping with the news but finally getting to sit down in a wheelchair and not struggle anymore with walking was welcomed.
I hadn’t fully understood my condition but as my body began to obviously limit my abilities, it hit me like a bus that my muscles would never function properly. I was really depressed/angry at that time so I didn’t care about school, playing with my toys or the future. What was the point of living? It wasn’t fair that other children could walk, run or even have a positive future.
My anger manifested when I couldn’t do an activity due to my progressive muscle weakness. I became jealous of my sister being able to do all the activities I couldn’t, like riding a bike instead I had to do physiotherapy exercises 3 times a day which were painful, exhausting and boring. The frustrating part was my inability to physically release those pent-up emotions properly. One day when I had an argument with my sister, I got angry so I decided to go to my room, I tried to close the door but instead, my footplate went through the door. That hole in the door is still there to this day as a reminder of what I was like.
“Unfortunately, unless we’re focused on building up our courage, which gives us our self-confidence and all that we need to make a quantum change in our lives, the voice of fear will always take the lead inside our minds.” – Debbie Ford
I had to leave the private school I attended because it was not wheelchair accessible so I had to be carried upstairs by the teacher. Leaving my friends was difficult. When I was finally provided with a wheelchair, I moved to a more wheelchair friendly school, I loved school as I made amazing friends (most of them were girls). Funnily enough, I had to say goodbye to friends again because we had to move from Loughborough to a bungalow closer to the Leicester Royal hospital.
I had to close my mind off from the past, psychologically manifesting the physical change I was enduring so I became a different person. I had lost all trace of my old identity, confidence, motivation and future prospects. I no longer thought of myself as a happy or confident boy only an empty shell. It’s only recently that I’ve managed to reunite both parts of myself. It was a difficult achievement as I had to learn to respect & love myself. At the time it sounded like an impossibility.
“Never expect people to treat you any better than you treat yourself.”
– Bo Benett
After my diagnosis, my parents got a divorce so Mum had to manage my care and run the home alone. As any child would, I blamed myself for the divorce but looking back it was the best decision for the family.
After scoliosis surgery at age 13, I spent most of my time isolated in my room – literally bed-bound. The reason was that my NHS provided wheelchair was uncomfortable as I was unable to alter my position independently which caused pressure sores and internal bleeds (due to Haemophilia). This meant that I was unable to attend my special needs school, so I was taught at home by the Hospital School whilst waiting to hear if the charity Caldwell Trust would fund my wheelchair. During this period, I learnt a lot about myself as it gave me the chance to look inside myself and try to work through my mental state.
“To know oneself is to study oneself in action with another person.“ – Bruce Lee
Attending Ashfield the special needs school in Leicester was good for me as I was around children with similar abilities and I received physiotherapy and hydrotherapy. However, in secondary school, they did not focus on academic achievement as the classes had mixed abilities. I felt that I wasn’t pushed enough to reach to my fullest potential, I personally aimed to get 5 GCSEs to enable me to attend my local college. After finally passing my GCSEs I moved on to college, however, the mentality from Ashfield that ‘college will be too difficult’ was engraved in my mind as I had issues with stringing sentences together and I thought I was not as intelligent as my able-bodied peers. I discovered that my fears were wrong – I could manage. I just wish that I was a student for longer than 2 years.
I battled with low mental health during my transition from children’s services to adult services as I was faced with so many overwhelming decisions. My Social Worker seemed to force me to move out of my family home. I felt that I was not in control of my life and living in the wrong way. This led me to decide to start taking more responsibility for my condition and care rather than relying on my Mum to make decisions. Gaining more autonomy of my life was the crucial transition into adulthood which meant that I was still independent living at home.
My Mum has always been a great support for me throughout life as we can discuss anything. Growing up she always made sure that I live a happy life but also prevented me using my disability as an excuse to behave badly.
“The greatest gifts you can give your children are the roots of responsibility and the wings of independence.” – Denis Waitley
Losing significant muscle function at certain periods in life has been difficult to cope with especially the loss of respiratory function & hand strength. I do still find those days depressing, having to accept another loss of function is almost like a continuing bereavement process. I now consider Duchenne that annoying friend you can’t get rid of so that it is easier to cope with.
I always try to let my negative emotions go by accepting them so that I can look at the loss objectively and try to find a solution. For example, after struggling to carry on gaming using the new PS4 controller I became frustrated and angry as gaming was my main hobby. However, after looking at the issue objectively I began to search for solutions which would help. This research connected me to amazing gaming charities such as ReMap and Special Effect who were able to help. Thanks to facing this problem I now focus my work on improving gaming and assistive technology.
“Small shifts in your thinking and small changes in your energy can lead to massive alterations of your end result.” – Kevin Michel
I’m generally a positive person when I wake up, as I check my mental state, try to understand the reason if I have negative mood and hopefully find a solution to the problem. I’m not suggesting that keeping positive is always easy for me, especially if there isn’t a solution available.
As I was growing up it was suggested that I see a Psychologist who could help me to cope and understand my emotions. After a few sessions, I felt that it was not helping me as they could not truly empathise with my condition without living with it. Initially, the sympathy was useful but it only took me so far. Therefore, I realised quite early on that somehow I had to find a way forward by myself. So I started to think of ways to help myself by looking into what I enjoyed doing which was reading. One day I visited the local library and was excited to find a new section filled with comic books. I think I have read every single comic book in Leicester. Suddenly I realised that I was feeling happier whilst reading because I could still physically turn pages or hold a book. My mindset started to shift away from my limitations to focus on things that I could still manage to do. I can no longer hold a book or turn pages but thanks to technology I can read online or on a Kindle eReader.
I think that finding a hobby or interest helps immensely with mental health. My passion for comic books began during my isolation in bed, it gave me the ability to escape my situation. I remember that the first comic I read was Star Wars: Outlander, learning about the Jedi code about controlling emotions such as anger, fear or hate really resonated with the emotions I was battling with inside. Green Lantern taught me the most, as he uses the willpower from his lantern ring to overcome his greatest fears. It’s only now that I’ve realised those comics/superheroes helped me to understand myself, morality and determination thus shaping me into the man I am today.
Through reading comic books I thought that I’d found a perfect coping strategy for anger, if I was reading then I’d feel okay. However this coping strategy was definitely not healthy, it was another way for me to detach from the reality I felt trapped in. I underwent extreme anxiety if I ever had to participate in the ‘real’ world. So my anger was replaced by anxiety, which affected my body in a different way – it manifested as a stomach ache and nausea.
“What lies behind you and what lies in front of you, pales in comparison to what lies inside of you.” – Ralph Waldo Emerson
Working with Trailblazers the young campaigner’s network from Muscular Dystrophy UK at the age of 20 was a big step for me, I was extremely shy, quiet and scared to speak. Trailblazers were really encouraging and gave me faith in myself. I gained vital communication and public speaking skills through active campaigning, asking questions at APPG’s, being interviewed by BBC, ITV Central, Leicester Mercury and Radio Leicester. It led me to win the 2012 Trailblazer of the year award. I’m now an East Midlands regional ambassador for Trailblazers, actively fighting to improve NHS provisions for the disabled community in Leicester.
Muscular Dystrophy UK has provided me with some amazing opportunities for growth over the years from work experience to my continuing work with Microsoft UK. I’m passionate about improving assistive technology from the top of the technology industry – it’s the future.
The next huge leap forward for me was in December 2017 when the Founder & CEO of The Muscle Help Foundation Michael McGrath chose me to become the third Muscle Ambassador, alongside Sulaiman Khan & Leah Booth. The Muscle Help Foundation is a small family charity delivering “personalised, transformative experiences called ‘Muscle Dreams’ for children and young people with Muscular Dystrophy and connected neuromuscular conditions.” Joining the tribe is a big responsibility but the opportunity for professional growth was hard to decline. Learning from Michael McGrath is invaluable, his motivation pushes you to not only make your future better but also the future for the next generation. Interacting/Speaking with fellow ambassadors, families and beneficiaries is why I joined, at that age I would have loved to have met an adult living and achieving with Duchenne. I really look forward to representing the MHF tribe at their annual Porsche Muscle Dream Programme in June.
Recently whilst listening to Michael McGrath’s powerful closing talk ‘The Power of the Polar Hug’ at the TEDx 2018 event held at the University of Warwick it struck me that by exposing vulnerability Michael dared to defy fear thus creating a bigger statement to the world. Exposing this truth means that Michael connected with hearts, therefore, the central theme of a hug which is kindness, compassion and love. I’ve never been able to hug someone for over 15 years, this has made it harder for me to express love especially since I now find smiling tiring. I reflect on those situations where I wish I could have given a hug, we all want that intimacy in our lives. As Human beings, we all need to rely on others, this is not a weakness but a strength. Community support is necessary to help with mental health issues.
“If you always put limit on everything you do, physical or anything else. It will spread into your work and into your life. There are no limits. There are only plateaus, and you must not stay there, you must go beyond them.“ – Bruce Lee
Thank you for reading – I’d love to hear your story, please comment below!
The simple act of breathing can be a daily struggle for adults living with Duchenne.
NHS England & NICE have recently announced that the process for approval of new drugs is about to change. These proposals – set to be implemented on 1st April – will impose significant constraints on the way that new drugs like Raxone are assessed and funded in England.
During my early 20s, I had multiple chest infections, these episodes affected my lung function so I required overnight ventilation. Growing accustomed to overnight ventilation was frustrating because of pressure sores from wearing the ventilator mask, finding the machine too noisy to fall asleep and also changing positions would mean having to adjust the mask.
Part of living with Duchenne means having to accept using the ventilator in the daytime which can be tough to use in public as it cannot be hidden or disguised. I lost confidence in myself as I didn’t recognise the person in the mirror.
My voice is quiet & I can easily get short of breath without the ventilator so I use it when have to speak for long periods. This dilemma is the toughest to overcome as there is no alternative to using respiratory support. At the time I wished there was a magic pill or medication to improve respiratory function. Initially, I restricted myself from leaving the house whilst using my ventilator but that made me feel angry, frustrated and isolated. I realised I had to change my perspective regarding ventilation. I could not shut myself away any longer because I am an outgoing person who enjoys socialising and leading a purposeful life.
I’m extremely interested in any drug such as Raxone that can improve or prolong respiratory function with some relevance concerning adults living with Duchenne. I strongly feel that the worst part of living with Duchenne is having breathing difficulties and restricted communication.
I urge NHS England to review the guidelines as these new proposals will adversely affect patient access to treatments for rare diseases. This is a shame as research into DMD treatments is moving extremely fast since the approval of Translarna.
It has been awhile since my last blog post but I feel that now is the perfect time to discuss the subject of wheelchair provision.
As of 8th March 2018, the Government announced new measures to ensure the safety of wheelchair users when accessing wheelchair spaces on buses. This is a brilliant initiative for inclusive public transport however, it is only useful if a wheelchair user has a wheelchair in the first place.
A wheelchair is unquestionably a fundamental extension of my body and capabilities, allowing me to keep mobile & stay connected to society. It’s not a luxury item. Living with Duchenne Muscular Dystrophy means that I’m totally reliant on my wheelchair for mobility, comfort & postural support.
I can never imagine a future without an electric wheelchair, in fact I would not have one.
At the moment I’m on the daunting mission to try to fund a new wheelchair through various ways:
- Charity funding
- Organising a local music fundraiser
- Approaching my CCG for part-funding
- Investigate the voucher scheme the Specialist Wheelchair Services offer.
My wheelchair gives me the freedom to have an active & purposeful life, without it I’d be isolated & stuck in bed. I’m proud of how my life has turned out, working with charities, attending meetings or travelling to see friends. Nevertheless, my independence would never happen without a wheelchair.
I have experienced being stuck in bed about 13 years ago when I was unable to sit comfortably in the electric wheelchair provided by the NHS wheelchair services. So, I had to wait a year until Caudwell Children’s Charity confirmed that they would fund my current Balder wheelchair.
My Balder wheelchair has been my faithful friend for 13 years, it has adapted extremely well to my changing abilities.
My current wheelchair doesn’t have suspension so whilst travelling in my Motability vehicle or driving outside, the slightest bump or pothole causes me pain & discomfort as my muscles no longer adequately support my neck. Driving my wheelchair outside is an intense & stressful activity as I’m constantly observing the road/footpath surface ahead just to find the route with the least bumps. I always have to think about safety as I have a bleeding condition (Haemophilia), this makes me more anxious to venture outdoors.
The new EVO Lectus wheelchair has a 4-wheel suspension system for a smooth driving experience & an adjustable seating/support system. The power backrest recline, tilt & power leg rest adjustment will help me to stay comfortable all day. I will need a new headrest, sensitive mini-joystick to compensate for my weak hand strength, inflatable lumbar support & a vehicle clamp down system.
Funding for the wheelchair has involved writing multiple letters or filling in forms for charity grant application forms, letters explaining the reasons why my CCG should fund my new EVO Lectus wheelchair. I received an assessment letter from the Specialist Wheelchair Services in Leicester stating that they could not provide a wheelchair that would meet my requirements & only offer a voucher scheme for manual wheelchairs.
I feel that it is unfair for the wheelchair services to expect that electric wheelchair users cannot benefit from the voucher scheme. Owning a private wheelchair has saved the NHS wheelchair service considerable money over the 13 years as I have paid for all the maintenance costs & upkeep of my wheelchair.
The Leicester CCG provide funding for my Personal Health Care Budget & have been wonderful in supporting me. However, as the first person in Leicester to approach them about funding a wheelchair, there is no clear pathway in place.
I’m now awaiting responses from every charity application, meanwhile, I have created a GoFundMe page – https://www.gofundme.com/vivekgohil kickstarting it off with £1000.
I appreciate every wonderful donation & support. You all provide me with hope to carry on so thank you.
The concept of authenticity is connected to creativity, the impetus to action must arise from our inner world not imposed by the outer world.
Detecting authenticity influences how I steer my ship through life, from every thought, decision, role or interaction.
“Authenticity means erasing the gap between what you firmly believe inside and what you reveal to the outside world” – Adam Grant
The Muscle Help Foundation (MHF) recently welcomed me as their 3rd Muscle ambassador. The role of a Muscle Ambassador is to grow the Muscle Warrior tribe, spread awareness through social media to keep the wonderful Muscle Dreams experiences alive.
Muscle Help Foundation’s CEO Michael McGrath was listed in 2015/2016 as one of the UK’s most influential disabled people. He comments that role models “have a really important responsibility to not only inspire tomorrow’s young people and lead by example but also make a commitment in helping others travel their own journey to achieve success.”
Michael McGrath is not only influential in terms of making wishes a reality, challenging the impossible or breaking down barriers but also in changing hearts and minds.
The philosophy of helping others to reach their full potential resonates with me. In fact, attending the 2012 Games Inspired Muscle Dreams event was the catalyst for me to realise my latent potential.
Michael McGrath’s energy and leadership, motivate you to be better, do better and hopefully a little bit of that magic lands on you to inspire the future. That is what authenticity is, construction blocks for a better future.
Our aim is simple: Deliver 657 Muscle Dreams for children and young people with Muscular Dystrophy – That’s one life-changing experience for every muscle in the human body.
Find out about the Muscle Help Foundation’s impact and discover how you can help us change lives and give hope … as we say, that’s the #powerof657.