Recommended Reads

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 disabilitymental health, positive thinking, overcoming adversity, trauma, and recovery.
(Left - Right) 'Defiant' by Janine Shepherd, 'Wheels of Motion' by Justin Brown and Lucy Hudson, and 'True Grit and Grace' by Amberly Lago
(Left – Right) ‘Defiant’ by Janine Shepherd, ‘Wheels of Motion’ by Justin Brown and Lucy Hudson, and ‘True Grit and Grace’ by Amberly Lago

‘Defiant’ by Janine Shepherd

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!

‘Wheels of Motion’ by Justin Brown & Lucy Hudson

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).

‘True Grit and Grace’ by Amberly Lago

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.
(Top Left - Right) 'Things Get Better', and 'Beautiful'. (Bottom) 'Start Your Day with Katie'. All by author, Katie Piper.
(Top Left – Right) ‘Things Get Better’, and ‘Beautiful’. (Bottom) ‘Start Your Day with Katie’. All by author, Katie Piper.
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 Q&A

1. What is it?

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.

Congenital Muscular Dystrophy ~ Autosomal recessive inheritance
Congenital Muscular Dystrophy ~ Autosomal recessive inheritance

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 wrote a whole post about my life with Ullrich congenital muscular dystrophy.

But in summary, it is slowly progressive, causes joint contractures, and does not affect the heart or intelligence.

4. Can people with MD have babies?

The simple answer is YES! MD doesn’t affect fertility in any way.

My good friend Fi Anderson has a rare form of MD, and is a mother to two daughters, neither of whom have MD. Check out Fi’s blog here!

5. Can a baby be tested for it in the womb or only after birth?

Prenatal diagnosis is possible for some forms of muscular dystrophy, but not all. Non-invasive testing can be carried out from 7 weeks into a pregnancy.

If one or both parents are carriers of a particular muscle-wasting condition, there is a risk the child will be affected.

It is advisable to contact a geneticist for further information and guidance.

6. What do you wish people unfamiliar with MD knew about it?

I wish there was much more awareness of the condition, and the fact that there are many varying forms.

Sadly, many people haven’t even heard of it.

Furthermore, those who have tend to associate it with Duchenne (the most common form).

Almost every medical professional I’ve encountered throughout my life has assumed I have Duchenne, which goes to show the lack of familiarity and education.

There is a lot of information, research and charitable funding for Duchenne MD, which is fantastic. But, there is very little for other forms, which is, I have to admit, rather frustrating.

This means that people living with lesser-known forms, that are just as debilitating as Duchenne, do not receive the same support.

7. How has your life been impacted?

UCMD impacts every part of my life.

I became completely non-ambulant at age 10, and I now use a powered wheelchair.

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.

Illustration by Jessica from The Disabled Life ~ http://thedisabledlife.ca/
Illustration by Jessica from The Disabled Life ~ http://thedisabledlife.ca/

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!

My Motability WAV
My Motability WAV

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.


Related Blog Posts:

Muscular Dystrophy | A Guide For Parents

My Life with Ullrich Congenital Muscular Dystrophy

Scoliosis | Why I chose not to have a spinal fusion

Coronavirus | Thoughts from a Disabled Pixie

Needless to say, we are in the midst of uncertain and unprecedented times.

Photo of a card reading, 'keep hanging on in there' (left) and a medical face mask (right).
Photo of a card reading, ‘keep hanging on in there’ (left) and a medical face mask (right).

Everywhere we look, we are bombarded with the latest news regarding Covid-19; on the TV, radio, newspapers and the Internet.

While most is factual information from reliable sources, there is also plenty of unhelpful rumour and speculation, particularly on social media.

Personally, I don’t find it beneficial to watch the News three times a day, unlike my folks!

We all know by now what we should and shouldn’t be doing to limit the spread and keep ourselves and each other safe.

Guidelines on social distancing during the Coronavirus pandemic.
Guidelines on social distancing during the Coronavirus pandemic.

Why add to the stress and anxiety? I’d rather focus on other things; happier things!

Of course, the situation affects everyone in some way; domestically, financially, their work, education, physical and mental health.

This is an incredibly frightening time for many, myself included. I am considered high-risk, since I have a progressive muscle-wasting condition that affects my breathing.

A Friendly Reminder from a Delicate Little Pixie

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.

Funny meme about the Coronavirus featuring the character Jay from The Inbetweeners.
Funny meme about the Coronavirus featuring the character Jay from The Inbetweeners.


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.

Final Thoughts

Show your thanks and appreciation for the NHS and those working in health and social care.

Illustration of NHS healthcare workers being saluted by Superman.
Illustration of NHS healthcare workers being saluted by Superman.

Be mindful of the most vulnerable in society, and help out if you’re able to.

Print-out for those wanting to help anyone self-isolating due to Covid-19.
Print-out for those wanting to help anyone self-isolating due to Covid-19.

Please don’t panic buy or stock pile. This isn’t the apocalypse, people!

Where possible, please support local businesses.

Be sensible, be safe, be rational.

This too shall pass…

World Book Day

Thursday 5th March 2020

My good friend and fellow wheelie wench, Lucy Hudson, is a published author!

Lucy, who also has a form of muscular dystrophy, is genuinely one of the most kind, caring and clever people I have ever known.

As today is World Book Day, I thought I would encourage you all to check out the two poetry anthologies she co-wrote with writer, Justin Brown.

Front cover of 'Wheels of Motion', a poetry anthology by Justin Brown and Lucy Hudson
Front cover of ‘Wheels of Motion’, a poetry anthology by Justin Brown and Lucy Hudson

Back cover of 'Wheels of Motion', a poetry anthology by Justin Brown and Lucy Hudson
Back cover of ‘Wheels of Motion’, a poetry anthology by Justin Brown and Lucy Hudson

Click here to buy!

Front cover of 'On The Road To Somewhere', a collection of poems by Justin Brown and Lucy Hudson
Front cover of ‘On The Road To Somewhere’, a collection of poems by Justin Brown and Lucy Hudson

Back cover of 'On The Road To Somewhere', a collection of poems by Justin Brown and Lucy Hudson
Back cover of ‘On The Road To Somewhere’, a collection of poems by Justin Brown and Lucy Hudson

Click here to buy!

 Related Blog Posts:

Wench Wars | Disney Villains

Book Review | Paraplegic, Sports Woman & Novelist

Book Review | ZENKA

The Girl on the Train: British Book vs. American Adaptation

Theatre Review | Birmingham Hippodrome

Guest Post | Wealden Rehab ~ Occupational Therapy

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
outcomes.

Assessing each client holistically encompasses the environmental considerations, which improve solutions for installation of ceiling hoists and
more detailed clinical considerations for seating.

Installation of multiple celing hoist units at Foreland Fields School

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
experience.

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.’

Ceiling hoist installation by Wealden Rehab at the Chiltern School


Many thanks to Wealden Rehab for providing this guest post.

Mentoring Kids

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??

NO, KID!!

I miss Bob. Happy days.

Interview | Disabled Entrepreneur Josh Wintersgill

Josh Wintersgill, 26, was diagnosed with Spinal Muscular Atrophy Type 3 at 18 months old. He has been a full-time powered wheelchair-user since the age of 10.

SMA is a progressive muscle-wasting condition. As a result, Josh requires assistance from carers, though his disability has never prevented him from achieving.

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.

Josh shooting an air rifle ~ Disability Shooting Great Britain

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.

Josh accepting his £30,000 prize from Sir Stelios (easyJet)

6. In 2018, you won the Stelios Award for Disabled Entrepreneurs from easyJet founder, Sir Stelios Haji-Ioannou. How did that make you feel and what impact has this had on you and your business?

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.

Award-winner Josh with Sir Stelios

Josh and his family with Sir Stelios at the Stelios Awards for Disabled Entrepreneurs

Josh with easyJet founder Sir Stelios

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.

Josh Wintersgill sat outside an easyJet aircraft, ready to try the easyTravelseat

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.

Josh and carer demonstrating the easyTravelseat

Josh travelling by car, using the easyTravelseat

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.

easyTravelseat.com


Thanks to Josh Wintersgill for answering my questions. 

Guest Post | Choosing a University that provides support for wheelchair-users

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.

Accommodation

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.

Interview | The Trailblazing Women of Muscular Dystrophy UK

5 Questions ~ 3 Influential Women

Emma Vogelmann (left) with Lauren West (right)

Lauren West, Trailblazers Manager

Michaela Hollywood, Co-Founder

Emma Vogelmann, Employability Officer

Michaela Hollywood (centre, front) campaigning with MDUK

1. What is your disability and how does it affect you?

Lauren West: I have SMA (spinal muscular atrophy) Type 2. I’ve never walked independently and got my first powered wheelchair at the age of two and a half.

Despite the severity of my SMA, I passed my driving test, went to university three hours from home, and moved to London to start my working life. I now still live in London with my partner and with support from live-in PAs who do all my personal care and domestic tasks.

Michaela Hollywood: I have SMA (spinal muscular atrophy) Type 2. I commonly say that I can do pretty much nothing without assistance except speak! Although, I have recently learned to drive using hand controls.

Possibly the biggest impact of my SMA is my breathing and the impact of chest infections, which can make me sick quite often. I’m also deaf, and have pancreatic insufficiency which affects my ability to digest food, and that can cause a lot of pain and fatigue. My motto is; I can drive a van, and boil a kettle but I can’t make a cup of tea!

Emma Vogelmann: I have SMA (spinal muscular atrophy) Type 2. I’m a full-time electric wheelchair-user and since contracting Swine flu in 2009, I also use a portable ventilator via a tracheotomy.

2. How and why did you become involved with MDUK Trailblazers, and what is your role?

Lauren West: I became involved at the very start of Trailblazers, after I left the Whizz-kidz Kids Board. I felt I had a campaigning void in my life after leaving the board, so I was really excited when I heard about Trailblazers. For a long time, I was the only Welsh Trailblazer and so I formed a great bond with the original team, Bobby and Tanvi.

I stayed involved throughout university through participating in work experience and attending events like APPGs. I was delighted after a few years in different jobs to be offered the role as Campaigns Officer, as I’d always wanted to work for Trailblazers. It was then super exciting to take up the role of Trailblazers Manager at the beginning of 2016.

Michaela Hollywood: I was involved with Trailblazers from the very beginning, before it even started!

I was at a MDUK Family Weekend when I was 16, and, because of my disability and access requirements, I couldn’t book tickets to see the band McFLY perform in my local arena. Consequently, I spoke to the then Chief Executive of the charity Phil Butcher, and said we need a “young people’s forum”. My idea at the time was that those of us with a muscle wasting condition have powerful voices that weren’t being heard, and too many non-disabled adults were making decisions that affected our lives without even thinking of consulting us. And out of that Trailblazers was born!

I volunteered for the first number of years, and directed the organisation from Northern Ireland for a year before it became official. I went to university and did my undergraduate degree in Public Relations, followed by a Masters in PR and Communications, specialising in political lobbying. I then joined the team from home in Northern Ireland a little over 3 years ago.

Emma Vogelmann: I was invited by MDUK to a Parliamentary roundtable meeting about disability employment. I really liked that a prominent charity was directly engaging with young disabled people and their lived experiences. After that, I asked if there were any opportunities to get involved with the organisation which led to a 4 month internship with the Campaigns team. I absolutely loved it, so when the role of Employability Officer was advertised I knew I had to apply. The rest, as they say, is history!

Michaela Hollywood, who has SMA Type 2

3. How do you feel about being an influential career woman with a disability? Has your disability made you more determined to pursue your career goals?

Lauren West: I don’t think I would describe myself as an influential career woman but if I am seen that way, then that’s a real honour.

I think my disability has made me much more determined in all parts of my life, not just my career. I have always been quite driven and even when I wasn’t sure what career path I wanted to follow, I knew I wanted to do something that made a difference.

But I genuinely think there’s been one driving force behind my ambition and that was a social worker who was sorting out my university care package. She made an off-the-cuff comment about how when I was done having fun at university, I’d come home and she’d help set me up on benefits in a little flat. Whilst this is needed for some, this is not how I wanted my life to go, but I knew I’d face similar beliefs and attitudes throughout my whole life. So I was determined to fight against that societal expectation.

Michaela Hollywood: For me, I think it made my education very important. And it’s made me steely and determined. It’s a good advantage to be able to use my voice as communication is so important when your impairment is so physical. I’m proud to be in the position I am, and try to keep my focus on what I can do for others.

Emma Vogelmann: I never really thought of myself as an influential career woman in all honesty. I suppose you just crack on with your day-to-day work, so you never stop to think about it.

Now I am starting to see the impact my work has on other people, such as my employment work. I’ve seen the people involved in my project access jobs, find a careers mentor and so many other meaningful changes. That’s incredibly rewarding for me.

My disability makes me more determined to do a lot of things, but definitely in my career. Someone in a meeting I ran summed it up perfectly, “disabled people feel the pressure to be exceptional just to be considered equal to their able-bodied co-workers”. While this is not the culture at MDUK, I do feel that internal pressure to prove myself constantly. I’ve learned first-hand and from others that it is unfortunately really hard to enter the working world as a disabled person, so once you’re there you feel like you need to show your employer why they made the right decision.

Lauren West, who has SMA Type 2

4. In relation to employment, what challenges have you faced due to your disability, and how have you overcome these obstacles?

Lauren West: Throughout school and university, getting a typical student job just wasn’t on the cards for me. For one thing, I just didn’t have the stamina to study and work. But also the usual student jobs just weren’t physically accessible to me. I was worried that this lack of work experience would put me at a severe disadvantage for getting a job once I’d graduated.

I was lucky that Trailblazers found me an internship at my local MP’s office, so I did one day a week there for three months in my final year of study. I also did work experience at MDUK which gave me a great taste of living and working in London.

I was incredibly fortunate to secure a job in London prior to graduating from my Master’s degree. However, when this job turned out to not be what I expected and complete with a very abusive boss, I had real trouble finding a new job. I mainly applied to charities and many claimed to be part of the ‘two ticks scheme’ which offered guaranteed interviews for disabled applicants.

However, it was rare I’d even get called for an interview and it took many unhappy months before I was offered a role as a mental health advocate. The same year, I started working for MDUK and I love being part of a charity that values diversity and inclusivity.

I think the only way I’ve overcome challenges within employment is just through stubbornness and determination. I really think there are organisations out there for everyone but it can just take a long time to find the right fit.

Michaela Hollywood: The biggest one is my health. Self-care is important to keep me ticking over. I’ve been really lucky to work for a group I wholeheartedly believe in, and where we see real help and progress happening. I try to make sure others are afforded the same opportunities I have been lucky to have.

Emma Vogelmann: I struggled to find an employer willing to give me a chance after university. Of course, this is true for most graduates. But I do feel that being a disabled graduate made it harder. I remember asking Lauren West for advice before I started working at MDUK about when, where and how to disclose my disability, because I didn’t want to be counted out too soon for jobs, but I also didn’t want to hide something I consider a strength. I decided to always disclose my disability, though this is a very personal choice that isn’t necessarily right for everyone. I work within a disability charity, so it is extremely relevant to say I’m disabled, but I know a lot of people who aren’t comfortable with this and that’s completely okay too.

Emma Vogelmann, who has SMA Type 2

5. What is your proudest achievement?

Lauren West: In terms of in my career, I think it was being in charge of the Trailblazers’ 10 year anniversary celebrations.

As someone who was part of Trailblazers from the start, being able to bring those 10 years together through an incredible event in Parliament was just the best experience. Seeing over 100 people all in one room celebrating their successes of the past 10 years will be forever one of my best moments.

Michaela Hollywood: This is a tough one! My dad, Michael, likes to tell anyone and everyone he meets to “Google” me because he is so proud of what I’ve achieved.

In 2015, I was given a Points of Light award by then Prime Minister David Cameron, and a few weeks later was named on the BBC 100 Influential Women List. I think those few weeks were a definite highlight.

Emma Vogelmann: What a tough question! I suppose it would be winning my case against a taxi driver who discriminated against me due to being a wheelchair-user. It happened on my second day of work at MDUK and it was a difficult experience to go through. But to have two courts agree that wheelchair-users cannot be overcharged was a great feeling. I really hope it will empower other wheelchair-users to not accept discriminatory treatment from taxi drivers.


Many thanks to the brilliant Emma, Lauren and Michaela for answering my questions.

International Women’s Day

To celebrate #InternationalWomensDay, here are some motivational words of wisdom from just a few of the many inspiring women throughout history.

These women advocate equality, inclusion and disability awareness.

Above: Deaf-blind American author and political activist, Helen Keller (1880 – 1968).

Above: Rosa May Billinghurst (1875 – 1953), was a women’s rights activist known as the “cripple suffragette”. She suffered polio as a child and, as a result, was left unable to walk.


What International Women’s Day Means to Me

Light is often shone on independent career women and high-profile personalities; celebrities, public speakers and so-called ‘world changers’.

Of course, these women deserve our respect and applause. But I’d like to also draw attention to the “ordinary” every-woman.

These are the women we are not aware of. We don’t know their names or their stories. These are the women behind the scenes who just get on with life, however challenging.

The single mum’s.

Those living with debilitating conditions and struggle to get out of bed each morning.

Those caring for multiple family members, who don’t have the option to go on holiday or pursue a career.

Women who are relied upon by disabled children and elderly relatives, and have no support or recognition.

Many suffer and struggle in silence. They simply get on with their lives without any fuss or complaint. These women deserve to be celebrated too!

They play a vital role in society – one that takes endurance, tenacity, strength of character and sheer grit. It takes a special kind of person to achieve this.

So remember, you don’t need to change the world to deserve respect and recognition. Being loved unconditionally, appreciated and making a difference to just one person is EVERYTHING!


Related Blog Posts:

International Women’s Day 2018

Interview | The Trailblazing Women of Muscular Dystrophy UK