Years ago, during a university art class, a fellow student sat idly, pissing and moaning about how awful and unfair his life was. (He wasn’t literally pissing, by the way. That would be odd!).
There, in my powered wheelchair, with teeth clenched, I chose to remain quiet while he complained about his superficial, so-called ‘problems’.
As I recall, he’d depleted the bank of mum and dad on nights out and booze, meaning he couldn’t afford to go clubbing again that week.
Oh dear, what an awful shame!
A lad opposite, who I didn’t know well, kept looking at me with a shared expression of annoyance – I remember it vividly. He finally interrupted, “you know what mate, we’ve all got problems! Maybe look around sometime”.
I couldn’t help but smile and offer a nod of respect.
I was 20 at the time. Now 33, my tolerance for ignorance and entitlement has dissipated with age.
Truth is, everyone, at some point in life, will encounter problems, challenges and setbacks. Indeed, we all feel stressed and depressed from time to time – these feelings are completely valid.
Of course, feeling depressed is NOT the same as suffering from depression itself. (That’s a whole other topic, which I won’t go into here).
I’m sure we’ve all been told, “others have it worse off”. While I find this phrase unhelpful and somewhat dismissive, I must concede, it is often true (sorry, not sorry!).
Not to undermine anyone’s struggles or experiences, I do think it’s fair to say that the problems of some people are far greater than those of others – to gain a little perspective, all you need to do is switch on the news!
Admittedly, over the years, I’ve allowed myself to indulge in moments of self-pity (not an attractive trait). The dark pit of despair is easy to fall into, and difficult to climb out of.
That said, I’ve never sulked or felt sorry for myself over what I consider petty complaints, such as missing out on a social gathering or event. Honestly, I’ve no time or patience for that sort of nonsense. Again, it’s about perspective.
On my darkest days, I would ask – Why me? What have I done to deserve this crap?
Funnily enough, no higher power ever answered. Which later lead me to ask – Why not me? What makes me so special?
Shit happens! And yes, some of us face more than our fair share of it. But like it or not, we must learn to accept, adapt and deal with it – limitation, loss, grief, disability, pain, trauma, illness…
What’s the alternative? Hide under the duvet covers and wallow? Trust me, that sort of self-destructive behaviour can only create further problems.
If I’ve learnt anything, it’s that life isn’t fair.
I continue to battle with frustration due to my health, physical limitations and circumstances over which I have no control. So, I now try my best to practice gratitude and remind myself of all the good things I am blessed with. I don’t always succeed, but I try.
I also find it hugely beneficial to avoid self-indulgent doombrains like the aforementioned art student!
Since we’re all still stuck at home, twiddling our thumbs, I thought I’d suggest some reading material for you.
The six books I have chosen focus on the themes of disability, mentalhealth, positivethinking, overcomingadversity, trauma, and recovery.
A few years ago, I had the privilege of interviewing this former Olympic hopeful who beat the odds and transformed her life after suffering a horrific accident.
Janine Shepherd radiates energy, enthusiasm and an endearing wit. Her memoir is a must-read!
Some of you may know that Lucy is a good friend of mine. Like me, she is a non-ambulatory wheelchair-user with a form of muscular dystrophy.
‘Wheels of Motion’ is a poetry anthology unlike any other. If you live with a disability yourself, I highly recommend you check this out! (Available on Amazon).
Amberly Lago is another remarkable, kind and generous woman I was able to interview following the release of her memoir, ‘True Grit and Grace: Turning Tragedy into Triumph’.
Fitness fanatic, Amberly’s life was turned upside down following a debilitating motorcycle accident in 2010, leaving her with significant nerve damage and lifelong chronic pain.
She now devotes her life to helping others.
Acid attack victim, Katie Piper, is now a well-known media personality, activist, documentary maker, charity founder and mother.
She has achieved so much since her brutal assault in 2008, which left her partially blind and with full thickness burns. Katie has endured over 200 operations and invasive treatment to ensure her recovery. She really is a true inspiration!
I read Katie’s first book, ‘Beautiful’, around eight years ago. It’s a real eye opener! Yes, it is shocking and distressing, but also incredibly motivational. I highly recommend this book to anyone and everyone.
Muscular Dystrophy is an umbrella term for a group of muscle diseases.
There are nine forms (see image above), which then divide into many more sub-types.
The various forms of MD differ significantly in which areas of the body are affected, severity, rate of progression, and the age of onset.
Some are born with the condition, while others do not display symptoms until adulthood.
2. What causes it?
A faulty or mutated gene. It is therefore, a genetically inherited condition.
If one or both parents have the mutated gene that causes MD, it can be passed on to their children. However, this doesn’t necessarily mean the children will have the condition. But they may be carriers.
I have a rare form of congenital (from birth) MD, which is an autosomal recessive disorder, meaning you inherit two mutated genes, one from each parent – as shown in the image below.
I am the only known member of my family to be affected by muscular dystrophy. My unaffected parents (both carriers) had never heard of the condition, and so, it was a huge shock to receive my diagnosis at the age of 4.
3. What form do you have and how does it differ from other types of muscular dystrophy?
I have a rare form of congenital (from birth) MD, called Ullrich.
I have severe contractures in all of my joints (knees, hips, elbows, wrists), and a severe scoliosis (curved spine). As a result, my balance is very poor.
UCMD affects my respiratory function. 7 years ago it became necessary for me to use a BiPAP machine (non-invasive ventilation) nocturnally.
For me, a common cold can very quickly develop into a serious respiratory illness, such as pneumonia (which I’ve had numerous times).
I experience chronic fatigue due to the progressive muscle-wasting and my squashed torso, which prevents expanditure of my lungs.
I try to live as “normal” a life as possible, having attended university and learnt to drive (though this is no longer possible as my condition has deteriorated).
8. Pros and Cons of living with UCMD?
The cons of my condition are mostly listed in the previous answer. The most bothersome of these are the respiratory decline and chronic fatigue.
You might think being unable to walk would be the most frustrating thing. And while I do wish I could walk, jump and run, this has never really bothered me all that much. It is what it is, and you learn to adapt.
The pros I would say, include the network of people I have in my life, people I wouldn’t know if it weren’t for my condition.
I have made some amazing friends through blogging and living with muscular dystrophy. For this, I feel incredibly fortunate and thankful.
Other pros include my Motability WAV (wheelchair accessible vehicle), blue badge for free parking, and being able to skip to the front of the queue at tourist attractions!
9. Has it changed/got worse over time?
Yes, my condition is progressive and life-limiting. My symptoms have got worse over time.
The term life-limiting can, understandably, be scary for many to hear. While I don’t expect to live to be old and wrinkly, I have no plans to pop-off anytime soon!
After all, if you’re a smoker you are limiting your life expectancy!
As a child, I could walk short distances wearing custom-made leg splints.
Joint contractures and the severity of my scoliosis has increased.
My lung function is significantly worse as an adult.
10. What are some of the common misconceptions?
There are many! Here are just a few assumptions…
I have family members with the same condition (I don’t).
I can’t have children.
I can’t have sex or a loving relationship (some even assume I wouldn’t want to).
Many assume I can walk, even when I try to explain I am completely non-ambulant.
People think I take lots of pills and potions – if only there was a miracle cure! I’d take it in a heartbeat.
For more examples, check out this blog post I wrote all about societal preconceptions related to being a wheelchair-user.
Though we all must now adapt and change our way of life somewhat, it’s important to remember this is only temporary. Things will improve.
I’ve heard people complain about the restrictions; mostly young, fit, able-bodied people. Yes, it’s a pain in the fat ass! But it isn’t forever.
Also, please be aware that many disabled and chronically ill people are repeatedly forced into prolonged periods of self-isolation throughout their lives. Plans are often cancelled last minute due to poor health. This isn’t new to them.
So, before you complain because you can’t go out partying with your mates, or to the pub, please consider those for whom limitation and isolation is a way of life.
Show your thanks and appreciation for the NHS and those working in health and social care.
Be mindful of the most vulnerable in society, and help out if you’re able to.
Please don’t panic buy or stock pile. This isn’t the apocalypse, people!
Wealden Rehab Equipment Specialists share the benefits
of having an Occupational Therapist in the team
Care equipment specialist Wealden Rehab works alongside in-house and external qualified occupational therapists (OTs).
Our in-house OT, Gayle Cardwell has 20 years experience, benefiting the team with clinical skills that can
be transferred into private practice. The collaboration between care equipment
providers and clinical experts results in a truly personal service.
Gayle offers her knowledge and understanding of both mental and physical health and wellbeing to the product advisors at Wealden Rehab, emphasising the importance of a personal approach being necessary to achieve the best
Assessing each client holistically encompasses the environmental considerations, which improve solutions for installation of ceiling hoists and
more detailed clinical considerations for seating.
Upon prescribing a piece of equipment, the occupational therapist must clearly show their clinical consideration. Gayle has devised and shared documents to encourage clinical reasoning when prescribing Wealden Rehab’s most popular
products. The documents are aimed at prescribing OT’s to consider the individual, environment, the task and to help justify the most appropriate outcome for the end user.
Gayle has provided a rigorous training program for all of Wealden Rehab’s product advisors, through individual and group training sessions. Her ongoing program is designed to enhance the assessments and the training they offer to their customers, which brings extra value.
Wealden Rehab recognise the
significance of having an OT in the team and a clinical approach in devising and delivering training for OT customers when prescribing Wealden Rehab products. We have observed increased confidence, greater understanding from OT’s in the
set-up and recommendation of our products, resulting in improving the end users
In the future, Wealden Rehab will be adding to the range
of products and, with specialist input, Gayle will be able to critique and share her clinical knowledge regarding new products. This will surely have an impact on the quality of life of many users, which is, Gayle says, ‘At the heart of
everything we do.’
Very few people know that I used to mentor and teach art to primary school children.
I’ve always found it easy to interact with kids. They say it how they see it – no agenda, no bullshit. And I have a very low tolerance for bullshit!
I’d happily take on a room full of kids over a room full of adults, any day!
I mentored one particular lad for about 18 months. He had just turned 8 when I first met him. He came from a deprived area, one of four siblings, his dad was in prison and his mum…well, let’s just say she wasn’t as conscientious as she should or could have been.
Later down the line, his 12 year-old sister accused one of the younger male teachers of indecent assault. Blimey, I remember that day vividly!
The lad, (let’s call him Bob!), was a lovely kid – really polite, always happy to see me (nice to be appreciated, eh).
Bob really struggled with reading and writing. To begin with, he refused to even try. All he wanted to do was play games. Time for negotiation – reading first, then we play games. He would often look up at me to read out the longer words for him. No mate, give it a try first. Break it down and work it out.
Admittedly, the school books were pretty crap, so I bought some more interesting ones to motivate him. He liked dinosaurs and pirates so that’s what we mostly read about.
I had studied art at university and he soon noticed that I could draw. So from then on, every session – “draw me a dinosaur!”, “draw me a pirate!”
Flipping heck, kid! How about you draw me a dinosaur!
In all honesty, I didn’t mind. It was nice to see him enthusiastic about something.
Despite my very obvious disability, in all that time, Bob never once questioned it – not that I would have minded if he did. From the get-go, I was just Caz the mentor.
He questioned everything else, mind you!!
~ How old are you?
~ What do you do?
~ Are you married?
~ Do you have kids?
~ Why not?
~ Where do you live?
~ Who do you live with?
~ Can I see your ID? (Yes, I showed him my ID to which he responded, “THAT’S NOT YOU!”)
~ What’s your real hair colour?
~ Can you dye your hair so I can see it, please??
He attended university, completed a placement year, works full-time, started his own business, and is now on the Great Britain Air Rifle Talent and Development Squad. Josh is able to drive a wheelchair accessible vehicle (WAV) and has lived independently since leaving his parental home at 18.
1. University ~ Can you tell us about the process of putting a care package in place and living independently as a disabled student?
During my last year of college, I expressed an interest in going to university. After research with my social worker and factoring my needs and desires, we identified appropriate universities that fit my criteria. I then had to decide on a live-in carer or a care agency. I opted for the agency route in order to be as independent as possible.
Once accepted by the university, I sorted accommodation and started looking for care agencies. My social worker provided me with a list of care agencies registered with the CQC, but it was down to me to make arrangements. The first care agency turned out to be unpleasant! So, after 4 months, I switched to another agency who I remained with for the duration of my university experience.
2. How was your overall university experience?
My overall uni experience was, let’s say, fruitful! From falling asleep in my wheelchair in front of the mirror to having university staff put me to bed within the first week because I was so drunk. It was clear that I was going to make the most of my 3 years at uni!
I got involved with numerous societies and activities to keep myself active and included with the student culture. I had a fantastic time and never experienced any discrimination or abuse. The staff made me feel at ease, allowed me to be as independent as possible, and provided access to necessary resources.
I graduated with a first class honours in IT Management and Business and, 4 years after graduating, I was invited back to receive an Honorary Masters in Technology.
3. You carried out an internship with Hewlett Packard during your studies, and then worked as a cyber security manager. What, if any, challenges did you encounter in finding employment and how does your disability affect your working life?
The general employment process with assessment days, face-to-face interviews and telephones interviews were fairly seamless. Most employers are extremely accommodating if you give them notice and make them aware of your access needs.
I do remember one assessment day with a popular car manufacturer where the activities impacted my ability to take part due to my physical requirements. This may have affected their decision to not employ me, even though I was just as capable, if not more so, than the other candidates. But apart from that, I have not had any issues finding employment.
Obviously, my disability limits me physically. However, as I work in technology it does not affect my ability to do my job. Yes, working full-time is not easy for me, but it’s also important to remember it’s not easy for able-bodied people either.
I have always been the sort of person who just gets on with it. I also believe that with technology making everything more accessible for disabled people, in most cases, our disability should not affect our ability to work. If you have any employer with an inclusive work culture, who is willing to support, understand and give you flexibility within the work place, then for sure you can work!
4. You returned to university to speak to students about entrepreneurship, and inspire them to start their own businesses. How did this make you feel and why do you think it is so important to encourage other disabled people to pursue any entrepreneurial aspirations they may have?
This gave me a sense of achievement and fulfilment. I believe that sharing experiences, whether positive or negative, helps others to follow their own passions and aspirations.
There is a general consensus that employment for disabled people is difficult to find, and arguably this could be due to the lack of inclusive employers. This is what makes the entrepreneurial world an attractive proposition for disabled people – it is flexible, offers them ability to work around their needs, and also avoids the hardship of being in a culture that is not disability confident.
5. You ventured into self-employment and founded AbleMove. Why was this so important to you?
I have always wanted to start my own business. When I realised I could create a product to make travel more assessible for disabled people, it was a no-brainer decision for me.
When you’re working on something you’ve created and can see the life-changing benefits, there is a real feeling of fulfilment.
Winning the award gave me a sense of personal achievement and recognition. It gave me a fresh perspective on developing my own business and the benefits it can provide versus working for a large company.
The prize money and a business deal with easyGroup Ltd enabled me to give up my full-time job in order to pursue my own business. This allowed me greater flexibility regarding how I manage my disability.
7. Prior to winning the award, you had to move home and rent within the private sector. What challenges did this present?
The challenges with the private rent sector (PRS) are vast, especially given almost 85-90% of PRS homes are inaccessible for wheelchairs.
After applying for the Stelios Awards, I was told I had to move out of a good sized two bed apartment due to the landlords requiring their property back. Having lived there for 3 and a half years, it was time to start the dreaded challenge of finding a needle in a haystack.
It’s purely pot luck if you can find an accessible house to move into straight away that doesn’t need any adapations.
After fighting with the council and various estate agents, we eventually managed to find a property on rightmove. Now, when moving home I need to consider carers since I rely on them throughout the day. My main PA (personal assistant) was unable to continue working for me, and so I had to re-jig and was then only able to maintain one PA.
Finding an accessible property and then having to manage your care situation around it is extremely stressful, tiring and irritating. On top of this, I was working full-time, getting the business of the ground, doing weekly exercises and training for the Great Britain Shooting Talent and Development Squad.
8. Can you tell us about your invention, the easyTravelseat. What is it and how does it benefit disabled people?
My travelling experiences involve being manhandled from wheelchair to aisle chair and then manhandled again onto the aircraft, which is highly undignified and uncomfortable. I therefore sought to create something that would help me travel in a more comfortable and dignified manner.
The easyTravelseat is a sling/seat combination that is designed to work as an in-situ piece of equipment. It is placed in your wheelchair, and you then remain seated in the easyTravelseat until you reach your destination.
For instance, when flying, you would remain comfortably and securely seated within the easyTravelseat for your entire journey through the airport, onto and during your time on the aircraft and off again.
Once I created it, I realised the many benefits it offers disabled people. It allows users to travel in a more safe, dignified and comfortable way, on all modes of transport. Furthermore, it opens up leisure opportunities such as canoeing, kayaking, skiing and so on. The easyTravelseat enables users to be transferred quickly and easily without having to be manhandled. The user is comfortably seated with their own cushion, a gel pad or foam.
9. Where did the idea for the easyTravelseat stem from, and what did the development process involve?
The development process involved researching the types of equipment already available, and the demand for such a product. I conducted market research to determine whether wheelchair-users would find the product useful. Then we identified a concept and progressed to prototyping in order to test how the seat would work. We then moved on to the point of manufacturing the seat and getting the required medical marking and approvals in place. During this process we had been working initially with airports around the lifting side of the device, including our sling manufacturer and then an airline. We started production in February 2019.
10. Does the easyTravelseat cater for disabled people of all shapes and sizes?
The easyTravelseat will cater for the majority of disabled users with the exception of very young children, bariatric passengers or people with extreme contoured seating.
11. How does the easyTravelseat compare with similar products on the market, such as the ProMove sling or the NEPPT Transfer Evacuation Sling Seat?
The difference with the easyTravelseat is the specific design and application of use for aircraft, whilst ensuring passenger comfort. It allows users to be moved around the aircraft, including during an emergency, and to then disembark the aircraft in a much safer, dignified and comfortable manner. All other slings are designed to be removed and offer no protection or comfort when in-situ.
12. What other assistance do you think airlines could and should be offering to disabled passengers?
I think the most important area airlines should be focusing on in the immediate is the loading of wheelchairs, both electric and manual, to prevent damage. It also concerns me the people on the ground lifting these wheelchairs are at risk of causing serious damage to themselves. There is industry equipment to load wheelchairs onto an aircraft without having to manually lift a wheelchair. This would help the loaders and reduce the amount of damage to both the chairs and the airport staff. Also, a secure area in the hold may also be advantageous to prevent luggage damaging wheelchairs during turbulence.
I also think the UK should be pushing (as Canada has done successfully) the airlines to provide free tickets for a carer when flying with a disabled person. After all, the airlines make it a necessary requirement for WCHC passengers who cannot move without any support to fly with a personal assistant/carer.
Airlines should also be addressing the toileting situation inside the cabin too. It is currently impossible for the majority of disabled passengers to access the toilet whilst flying.
Regarding hidden disabilities, there are those who are much more calm when they are surrounded by objects which are all different colours.
Long term, all airlines should be looking to allow wheelchair-users to remain seated in their wheelchair, inside the cabin, during the flight.
13. What does the future hold for you and your business?
The future is bright for easyTravelseat! We are off to a steady start with interest across the globe. We believe in an accessible aviation world and are able to provide an immediate solution to help reduce some of the significant problems with maintaining safety, dignity and comfort when flying with a wheelchair.
We will now look to ensure easyTravelseat is easily accessible in as many countries across the globe as possible in the coming years.
Picking a university can be a daunting task at the best of times – you need to try to chose one that matches your desired subject with predicted grades, and be in a location that you’ll be happy to live for the next three to four years. But for those who require a wheelchair trying to make the right choice can be a much greater challenge. Let’s run through some of the things you need to consider, as wheel as some universities that really stand out as being the most wheelchair, power chair and mobility scooter friendly.
City or Campus?
There are two types of universities in the UK, city and campus universities. Many of the best rated unis in the UK are town based – Cambridge, Oxford, and Durham for example, are town based. This can be a challenge as accommodation, lecture rooms and tutorials may all be in different locations and require navigating old city streets. However, some of the older universities are totally self-contained, and you may hardly need to leave the confines of the college walls during your stay. So be sure to check exactly where you will be housed and where your lectures and tutorials will be if you apply to a city university.
Campus universities are generally more wheelchair friendly because everything is on one site and most buildings are modern and accessible, and there will often be shops and other amenities on site too. This can make your day-to-day activities much easier, but if most of the socialising takes place in a nearby town, you may feel isolated if there are not good transport links in place, although a good mobility scooter or powerchair may be the solution.
As mentioned, few students look at the accommodation before going to uni, but this is probably the most important consideration. Many newer city universities have accommodation in mid-rise buildings (4 to 11 storeys) which although are usually modernised with lifts, are not always the most suitable option for wheelchair users.
Ideally, you should be able to get a room or apartment that has full wheelchair access with accessible bathrooms and kitchens. Kitchens should have low sinks and worktops, and ideally, there should be a wet room that you can roll your wheelchair into.
Disability Support Service
Contact the Disability support service at the earliest opportunity to discuss your needs and the facilities on offer. Pay them a visit on the open day too and have questions ready to ask – make sure they are geared up to support you fully.
Attend Open Days
Before applying to any university you should attend an open day. At the open day be sure to ask about accommodation too (many people forget this part) and take time to visit the halls of residences or area with student houses. Ask to see lecture rooms and tutorial rooms to check wheelchair access yourself.
Look Beyond the Campus
It is important to look beyond the university grounds as with both city and campus universities you will need to have easy transport to and from them. Some newer universities are often located in parts of town far from national railway and bus stations which can make it very difficult if you need to leave and arrive by public transport.
The terrain is also important. Cities such as Edinburgh and Exeter may provide modern university facilities, but many of the roads are very steep and wheelchair users will struggle to navigate all streets. It might be sensible to look up the most wheelchair friendly towns in the UK and then see which ones have universities offers courses you’re interested in. If you do head to a hilly university town, you might need to buy a new wheelchair that is lightweight and more suitable for the terrain.
Which Is Best?
There really is no “best” university for wheelchair users – every university works hard to accommodate all students equally, but one that does stand out is Loughborough University.
Loughborough is rated as one of the best campus universities (named Times University of the Year 2019) in the UK thanks to its top class facilities, access to green spaces and a good community feel in the student village. Loughborough’s Disability Office says that they support a range of long-term conditions as well as wheelchair users.
For a city campus university, here’s an interesting account of study at Canterbury Christ Church University. As you can see, some universities are extremely accommodating and will provide an excellent learning environment no matter what your abilities.
Are you, or have you recently attended, university as a wheelchair user? Please share your experiences below.
This guest post is provided by CareCo who provide mobility advice and support through their website and UK network of showrooms.