As a disabled blogger, this is by far the most common message I receive from readers and followers – particularly those in their twenties, living with disabilities and chronic illness.
For anyone out there who has ever felt this way, I get it. I hear you!
Born in 1988 with a rare progressive condition (Ullrich congenital muscular dystrophy), I’ve personally struggled with various insecurities and a lack of self-worth my whole life.
For me, the belief that “no one would ever want me” was fuelled by cruel comments, ignorance and exclusion.
Growing up, I felt invisible, unseen, overlooked, and yet, painfully inescapably obvious to all. I wanted to hide away, and, at the same time, longed for someone to notice me. To see me, the person beyond the disability.
Me, aged 15
I was one of only two disabled students at a mainstream high school, surrounded by 700 able-bodied kids. I stuck out like a sore thumb! I was the anomaly. And, I was ever-aware of it.
Seated in my manual wheelchair, unable to transfer, weight-bear or self-propel, completely reliant on others for mobility, I felt helpless, useless, a burden.
At 13, during the month of May, I was admitted to hospital with pneumonia. One of many bouts throughout my life. I didn’t tell anyone at school. No one noticed my absence. No one asked. It seemed, no one cared.
Experiences such as this further exacerbated my introversion, isolation, my mistrust in others and the overwhelming thought that I was better off alone. You can only really rely on yourself, right?
My health has always been, for lack of a better word, crap! Deteriorating with the progression of time. It is an incredibly limiting factor. So too is relying on carers. I can’t get myself in or out of bed, I can’t dress or undress myself, I can’t drive, or work. What do I bring to the table?
Me, aged approx 30, sat in a hospital waiting room wearing a face mask
Spontaneity, what’s that? Everywhere I go, everything I do must be pre-planned. And often, those plans fall through when my chronic fatigue forbids me from leaving my bed for the entire day.
It’s no fun! It’s beyond frustrating and bloody miserable at times.
Why would anyone choose this life? Why would anyone choose to be with me? What can I offer?
I’ll be honest with you, these questions continue to plague my thoughts every now and then. Like a lingering grey cloud that will never pass by entirely.
Me, in my Sunrise You-Q Luca powered wheelchair. Aged 33
Yes, I’ve had romantic relationships. Some good, some not so good. I’ve dated both able-bodied and disabled guys.
My brief stint on dating app Hinge was an experience! Guys can be shamelessly brutal, often telling me I’m no one’s type and they wouldn’t consider dating a disabled girl. Though tough to hear, I was never surprised, nor do I bear any resentment. Everyone has freedom of choice and can date whoever they want. I never felt any desire or inclination to convince anyone of my worth.
I won’t lie, my health issues and physical disability did present challenges, cause tension and resentment within relationships. Things were said that are forever imprinted in my memory.
The saying goes, “love is all you need”. I don’t believe this to be true. I think trust, loyalty and the ability to care for someone even in the darkest of times is arguably more important.
Love was very much present in one of my previous relationships, but deep down, I knew it wouldn’t last because I couldn’t rely on him. He was all in on the good days. But on the bad days – my bad days – it became increasingly clear that he wasn’t invested. He couldn’t cope. Love alone wasn’t enough.
Me, in my Quantum powered wheelchair, aged approx 27
I don’t want to feed you empty clichés or try to convince you it will all work out in the end; that there’s someone for everyone. Because relationships are hard, even without the added complexities of a disability or chronic illness!
What I will say, what I want to emphasise to anyone reading this, is to focus on your relationship with yourself. Be kind to yourself, prioritise your health, your wants and needs. Stop worrying about what others may or may not think of you. Does it really matter?
When you do meet someone who is worthy of you, (yes, we’re ALL worthy of love, affection and intimacy), don’t try to hide your struggles and insecurities. Be open, honest and real with them. Let them see you at your very worst.
Some will cut and run. You will face rejection. We all do. This is part of life. Don’t waste your tears over these people. Trust me, it’s not worth it!
It’s easy to find friends and lovers when you’re young, fit, able and care-free.
But, this is where those of us living with debilitating conditions hold the advantage (lucky us!). Because our lives are far from easy and care-free. We can trust that the people who choose to be with us, no matter what, truly do care.
As much as I love the spooky season, I’ll be glad to see the end of October this year.
I fell ill on the first Saturday of the month, and I’m still not fully recovered.
It’s now over 4 weeks since I left the house, or saw anyone other than immediate family and carers.
For me, this isn’t unusual. Prolonged periods of chronic illness and isolation are, unfortunately, all too familiar.
A simple cold can very quickly progress into pneumonia – a frequent occurrence over the years, resulting in lengthy hospital admissions.
The vast majority of people don’t understand how I can be so ill for so long. Why would they? It’s hard to comprehend something you’ve no knowledge or experience of.
Most so-called medical professionals are totally clueless. It’s therefore no surprise that I’m met with blank faces when telling people about my disability.
Explaining the ins and outs of my condition and how it affects me, can be exhausting. But it’s also important.
I’m almost 34, and, for me, the most debilitating and frustrating part of my disability is the daily fatigue and impact on my respiratory health.
As the saying goes, ‘health is wealth’.
Living with Chronic Illness
It can be incredibly difficult to remain optimistic when living with a progressive condition and chronic illness.
This past month has been tough!
Following three decades of cancelled plans, missed opportunities, and life on pause, here are a few things I’ve learnt:
1. Never make decisions when at your lowest.
2. Try not to withdraw or push people away. Knowing I’m unable to commit to plans, it can be easier to distance myself from people to avoid letting them down.
3. Reach out to loved ones.
4. Find joy in simple things.
5. Don’t waste valuable time, energy and effort on that which doesn’t serve you.
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.
For context, I live with a very rare, progressive, muscle-wasting condition (Ullrich congenital muscular dystrophy). Unable to weight-bear, I use a powered wheelchair and rely on carers to assist with physical activities. In addition, associated health issues affect everyday life.
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!
For the past three weeks, I’ve been battling Covid, having tested positive on 27th October. I was, in fact, due to receive my booster jab the following day. Bloody typical! Despite being double vaccinated, the virus hit me hard, really hard.
A selfie, taken on 24th October – the day I caught Covid-19
Physically disabled from birth, I’m one of the many considered ‘clinically extremely vulnerable’.
My condition, Ullrich congenital muscular dystrophy, is rare, progressive and affects lung function. This is made worse by a spine that’s as crooked as a question mark and a squashed torso.
I’ve always been a “sickly kid”, susceptible to respiratory viruses, which become more and more difficult to overcome, the older I get.
Throughout my 32 years, a considerable amount of time has been spent in hospital. I’ve endured several bouts of pneumonia, pleurisy and a collapsed lung. Furthermore, my immune system is very much suppressed and affected by at least 15 surgeries under general anaesthetic – I stopped counting after a while.
It’s fair to say, my fragile, little body has taken a battering. And I am tired.
These days, it takes at least a month before I even begin to improve. Life quite literally comes to a stop. Once symptomatic, I become dependent on my BiPap ventilator 24/7. I go from bed, to chair, to bathroom. And that is how I exist. Time becomes meaningless and the days merge into one.
~ I’m not including photos of myself whilst ill because, well, I don’t want to. I don’t have the energy or interest for selfies, and, I don’t want pity. I don’t allow anyone other than my parents to see me in this state, it’s simply personal choice. ~
Few people really empathise and grasp the seriousness of the situation, which I totally appreciate. It’s difficult to comprehend something you haven’t seen or experienced for yourself. Admittedly, 20 year-old me wouldn’t understand either.
Life back then was very different. I was a night owl, regularly staying up until 4am and feeling fine the next day. I completed a coursework focused university degree, spending some days on campus from 9am – 9pm, followed by a 40 minute drive home. Though never a party girl, I did my fair share of drinking and socialising. Trips away with friends involving going out all day and every night, then clambering back to the hotel in the early hours just didn’t affect me. I had the energy and ability to do the things I wanted to do, and it was fun.
These days, it takes everything I have to get out of bed (assisted by carers) and shower.
It’s not the life I wanted or hoped for. But it’s all I have to work with. And yes, it does affect my mood, attitude, point of view and relationships.
A LOT of my time is spent resting. Of course, I would much rather be out, exploring, experiencing, making memories, living it up, and doing fun, daring, exciting activities. But I simply can’t.
Though I try to hide the severity of my condition, a select few people, whom I trust and am closest to, know how much I struggle.
I only told four people about my Covid diagnosis. Mainly because, well, it isn’t the happiest subject, is it! And right now, all of my resources are focused on recovery.
Inevitably, word gets around, and neighbours as well as family friends are also now aware. And they’ve been absolutely incredible.
Flowers from friends
To the people who expressed genuine concern, care and support – thank you so very much! You know who you are, and I value each and every one of you.
“Thinking of you” flowers
The generous gifts, cards and daily messages have been a huge comfort. I’ve even received medical supplies, vitamins and immune boosting supplements from friends! Real friends who step-up when life is pretty shitty.
Knowing that people care is worth more than anything in life.
My constant companion
To close this rather rambly and inarticulate post, I want to pay the biggest tribute to my parents, particularly my mum, who has patiently cared for me throughout, and not left my side. It’s not only my life that’s been put on hold by Covid, but theirs too.
For those who don’t know, I still live with my parents, in their home. It’s far from ideal and we do butt heads from time to time. But the love and loyalty is unconditional.
My mum is 67, suffers from arthritis, and, four years ago, underwent knee replacement surgery. She’s lead an incredibly challenging life, which I won’t go into. She is an UNPAID carer. She does not receive a single penny to care for me, and yet, she does it without question or complaint.
To whoever is reading this, please acknowledge the country’s thousands of unseen, undervalued, unpaid carers. Let’s raise awareness of the situation and show them some care, support and gratitude!
Those who work regular 9-5 jobs get to come home at the end of the day and relax. For family carers, the work never ends. It is relentless, grueling, and it impacts their lives as well as their mental and physical health.
Living with a physical disability, as I do, often means dealing with carers. Believe me, this is not a lifestyle choice! It is a necessity.
I’m a very private person who enjoys their own company, hates relying on others, and I cannot do small talk to save my life!
The last thing I want is to do each morning is slap on a happy face and engage in polite conversation with carers, as I’m still half asleep and reluctant to leave my comfy bed.
Some days, it takes everything I have to not call out, “would you kindly buggar off and let me be!”.
Not that I’m ungrateful for the support they provide (no, really). Without them, I would quite literally be stuck – unable to get in or out of bed. They enable me to live my life.
Of course, this isn’t without issue.
I employ my own part-time carers, funded by Direct Payments. Consequently, I am responsible for hiring, firing, training, insuring, managing and paying my employees. This can, at times, be somewhat testing.
I never wanted to be an employer, in any capacity. But as previously stated, this isn’t a lifestyle choice. I NEED carers. Agencies are, well, far from ideal. And so, this is my only option.
As with most things in life, carers come and go. Some leave after a few months, while others stick around for years. Either way, the process of finding new employees, who are both capable and reliable, is always stressful.
Imagine, if you will, routinely inviting strangers into your home, to observe you in your most vulnerable state – first thing in the morning; naked, dribbly, grouchy, with whiffy armpits, stubbly legs and a head of hair like Tina Turner’s!
Tina Turner
Sadly, I don’t look quite as graceful as Cinderella on waking!
You then have to instruct, explain and demonstrate your personal care routine, entrusting your safety to this stranger.
It is, therefore, all the more reassuring when someone comes along who instantly puts you at ease, makes you laugh, talks (but doesn’t babble), and actually wants to work. This isn’t easy to find!
It’s early days with my latest newbie, but after a somewhat turbulent couple of months (care-wise), it is a huge relief.
Always nice to close on a positive note, eh folks.
This week, the UK government issued new measures to suppress the spread of Covid-19. From Monday 14th September, social gatherings will be limited to 6 people.
In all honesty, I can’t say I’m surprised at these restrictions. From my perspective, as a physically disabled shielder, it seemed inevitable.
Our government has actively encouraged people to return to work, to school, the High Street, the salon, the gym, to pubs and restaurants.
Of course, we all want a return to some sort of normality. And while it is essential we sustain our economy through supporting businesses and minimising unemployment, it would appear BoJo favours wealth over health.
Those at greater risk have been largely neglected; the elderly, disabled and those with underlying health issues.
Many, like myself, have been shielding since March. We have been isolated in our homes, watching the world go by from behind closed windows.
[Image Description: An elderly man in a care home looks out at a female relative from behind a closed window. A carer, wearing a face mask, sits beside the man]
Some have endured months without medical support. Personal carers, though essential, pose a risk to the most vulnerable. And others are forced to leave work, since there is little to no support for disabled employees.
I am very fortunate to have been able to continue accessing my routine hospital appointments throughout lockdown.
Despite initial anxiety and fears from friends, I felt safe and protected during every one of my 6 hospital visits and 2 GP appointments since March – all thanks to our invaluable NHS.
[Image Description: Me, sitting in a hospital waiting room, wearing a face mask]
However, after waiting almost a year for a much-needed respiratory referral, I fear my upcoming appointment may now be cancelled, due to the latest guidelines.
My discussions with various medical professionals over the past few months reveal concerns for a second lockdown around October.
With Flu season approaching, this warning poses an even greater strain and impact on the elderly, disabled and NHS.
But there are also times when my patience is wearing thin. Some days, I’m just not in the mood!
Today is one of those days.
I attended a routine hospital appointment and parked my Motability WAV in a disabled bay, with my blue badge clearly displayed, as usual.
As I reversed out of the WAV, I heard a woman stood directly behind me shouting, “I’m just having a nosey inside!”
*Cue eye-roll* Oh, feck off, lady!
I then waited in a small room crammed full of virally infested patients for well over an hour, only to be told the nurse I was due to see went home sick hours before. Which begs the question – why not inform me of this on arrival?!
I waited a further half an hour to be seen by another nurse. At least it wasn’t a wasted journey, I guess.
Having returned to my car, I was ever-so-slightly pissed off to find a parking ticket!
As soon as I got home, I logged-on to check out the meaning of this fuckery. As I suspected – no reason for issue, no explanation and no photo evidence.
Needless to say, I wrote a strongly worded appeal. Under no circumstances will I be paying this unjustified “parking charge”. No, just no!
Shortly after, I received a phone call from the CHC (Continuing Healthcare) department who claimed to have made a personal care payment back in the summer. They didn’t.
I won’t go into details (it’s a long story!) But my battle with Continuing Healthcare has been a lengthy and stressful one, with absolutely no benefit.
Okay, putting things into perspective, this isn’t the end of the world! I’m now sat watching cartoons with my beaut of a nephew. So it aint all bad!
I have just turned 31 (sooo old!) and, in order to live my life, I require support from personal carers.
Today, I (well, actually my mother) received the following letter…
Now, don’t you just love it when so-called “professionals” invite themselves to your home to drink your tea and eat your biscuits at a time and date to suit them?
How about…NO!
It seems the assumption is that disabled folk just sit at home all day, idly twiddling their thumbs ~ Nah, mate.
Not only that, they failed to inform me and instead wrote to my mother! WTF?!
I know I’m child-sized but I am in fact a fully-functioning adult who manages all aspects of her own care needs.
~ My disability!
~ My carers!
~ My business!
~ My life!!
I wouldn’t mind so much, only I’ve spent months jumping through hoops (not literally, obviously) and answering the most inane questions in order to qualify for NHS CHC (a continuing healthcare package – to pay personal care assistants).
*FYI ~ I am currently in receipt of Direct Payments, enabling me to employ and pay my own carers*
As yet, I haven’t received a penny via CHC, though I did get a call to say an initial payment was made during the summer. Nope, sorry, no it has not!
(Little tip for you ~ when it comes to NHS/council funded care, QUESTION EVERYTHING!)
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.
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.
For over a decade, I have been hiring assistants (via Direct Payments) to help me with an array of tasks, including personal care.
I prefer to recruit my own staff rather than use agency workers. This has given me much more flexibility in terms of when, how and for the duration of time I use my PAs. It also means that I know exactly who will be providing my care, which is not always the case when going down the agency route. However, with this comes the added responsibility of being an employer, which in itself can be rather daunting and stressful.
I’m in the fortunate position of having a hugely supportive family who provide much of my everyday care. Since I live with my parents, I am unable to officially employ them as my carers, and so they carry out this role unpaid!
I do appreciate that not everyone has relatives to rely on. For these individuals, the only option is to pay others, often strangers, to assist with their care needs.
Like me, they might advertise, interview and hire independently, paying for their care with council funded Direct Payments (available in England, Scotland and Wales). Alternatively they may decide to use an agency.
For others though, in times of desperation, there’s no choice but to leave their residence and spend time in respite care. I know of cases where young people in their 20s have been placed in nursing homes for the elderly, where staff have no knowledge or experience of their condition and specialist needs. Personally, I can’t imagine such an experience and count myself lucky that I’ve never had to resort to this.
Over the years, I’ve employed around 10 carers/personal assistants, and interviewed many, many more! The most successful sources of recruitment for me are friends, neighbours, word of mouth and Facebook, though I also advertise locally (newsagents, post office, school newsletters, newspapers, etc).
Carer’s Allowance
If you are a full-time carer (at least 35 hours per week) you may be entitled to Carer’s Allowance.
You don’t need to be related to, or live with, the person you care for.
My Mum is in receipt of Carer’s Allowance (currently £64.60 per week) as she is my primary carer.
This may seem like a decent sum of money, but consider ~
£64.60 = 35+ hours care work. That equates to £1.80 per hour
This doesn’t include expenses, e.g. fuel/travel costs, parking fees (hospital appointments), etc.
My Open Letter to Carers/PAs
On behalf of all who require personal/social care, I invite anyone considering taking on the role of carer/personal assistant to think carefully about what it really means before you do apply.
Firstly, this is not a choice for us – it is a necessity! We’re not too busy or too lazy to do things for ourselves. When we advertise for carers, it’s because we NEED them and not necessarily because we want them.
As physically disabled individuals, many of us cannot independently carry out essential everyday tasks such as washing, dressing and toileting. To have no option but to entrust such intimate activities to another person – a stranger – is unnatural and unnerving. We are, in effect, placing our lives in your hands when you take on the vital role of personal carer.
Recruiting carers can be a lengthy and extremely stressful process for us. There’s the initial worry over whether there will be any applicants at all, followed by the dreaded interview process.
We often find ourselves waiting around for interviewees to attend, only for them to carelessly fail to show without any notification.
Please do bear in mind that disabled peoplehave busy, purposeful lives too, sodon’t waste our time. We appreciate there are valid reasons for failing to attend job interviews, but it’s no hardship making a quick phone call or sending a text message to let us know in advance.
As you would with any potential employer, be professional and courteous.
If and when we are able to successfully recruit, it can be incredibly frustrating and disheartening when that person flippantly decides to resign days later. You may wonder how and why this occurs, but the sad fact is that for many disabled people it is a reality. We are not afforded the luxury of being able to manage until a replacement is found. No, we can’t simply wait for the right person to show up.
Some of us even have to resort to respite and residential homes in the meantime, thereby taking us away from our own homes and everything we hold dear. Try to imagine if you will, how demoralising and distressing such a situation would be if it happened to you. I therefore reiterate how important it is to think before applying for a role as a personal carer.
Are you dedicated, trustworthy, reliable, able and willing to learn? Ask yourself: are you considering care work for the right reasons? (it is not an easy option!)
Your role as PA may be demanding and will involve a variety of tasks. You will be responsible for the safety and wellbeing of your potentially vulnerable client/employer.
So, if your attitude to care work is casual and indifferent, this is most definitely not a job for you!
![[Image Description: An elderly man in a care home looks out at a female relative from behind a closed window. A carer, wearing a face mask, sits beside the man]](http://www.lifeontheslowlane.co.uk/wp-content/uploads/2020/09/20200910_161837-1024x522.jpg)
![[Image Description: Me, sitting in a hospital waiting room, wearing a face mask]](http://www.lifeontheslowlane.co.uk/wp-content/uploads/2020/09/20200910_163718-e1599757232370.jpg)
