The Last 6 Weeks | Disability Battles & Small Wins

May was a funny old month, with slightly schizophrenic weather (is it summer yet?!), and some much needed time to myself.

Since I last blogged in April, I’ve been mostly occupied with life admin and catching up with friends.

The former doesn’t sound very exciting, and it isn’t, but as anyone with a disability or chronic illness knows, there are many ongoing battles to be fought.

I met with various doctors, occupational therapists, and mobility equipment reps. I even managed to recruit a new carer, not easy in the current climate, to drive me from place to place in my Motability WAV (wheelchair accessible vehicle).

My powered wheelchair, partly held together with gaffer tape, continues to fall to pieces, and is now in need of new batteries.

Why do they suddenly decide to fail, without warning??

This is all the more challenging since it isn’t a NHS chair, and so I am responsible for sourcing and funding repairs.

Despite actively bidding online and pursuing a move for over a decade, I still live with my parents in their home – far from ideal for any 33 year-old!

Finally, after a consistent bombardment of calls and emails, community housing managers agreed to meet with me in person.

Though empathetic, they openly admitted it is very much a postcode lottery issue, (I couldn’t tell you how many times I’ve heard that excuse). Consequently, it could take years to rehouse me!

I will persevere and hope for the best, while maintaining realistic expectations.

On a happier note, May provided some space for myself, as my folks took a little staycation.

People often misunderstand my need for solitude. Then again, these people have their own homes and the freedom to do as they please, when they please. It’s about freedom of choice and being able to live life on my terms.

As tiresome and frustrating as it is, this is the reason I battle with medical professionals, OT’s, community housing, social services, and so on – for a better quality of life!

“Though she be but little, she is fierce”

~ William Shakespeare

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.