I was born with a rare form of muscular dystrophy, affecting my body and physicality. I have a severe scoliosis (curvature of the spine) which, for various reasons, is not surgically corrected. This causes asymmetry and a shortened torso. Joint contractures mean I am unable to stretch out my arms or legs. Furthermore, the muscle wasting nature of my condition results in extremely thin limbs.
Now 31, I look very different from other women my age. My pixie-sized stature is emphasised by the scoliosis. In place of womanly curves, are unwanted and abnormally crooked humps and bumps. This visible contrast negatively impacts my sense of self and makes me feel odd, weird, and self-conscious.
I love fashion but fashion doesn’t love me
Over the years, I have desperately sought to hide my body with shapeless, baggy clothes. Anything resembling a potato sack is a winner. I live in leggings because jeans are a no-go and frankly, they are the next best thing to pyjamas!
Clothing manufacturers don’t cater for my body since it doesn’t meet standard criteria. Shopping is not an enjoyable experience. It is a frustrating and disappointing struggle to find anything at all to fit, let alone look flattering. Most of the clothes I buy have to be returned which makes me wonder why I bother at all – well, simply because I can’t roll about naked!
Accepting my unique body
Do I love, embrace and celebrate my unique body shape? Hell, no! BUT – I have slowly and gradually learnt to accept it. After all, there’s absolutely nothing I can do to change it. So why stress myself out over something I cannot control.
Exercise isn’t an option for me. I can’t go to the gym and buff-up. And why should I resort to cosmetic surgery? Why put myself through pain, trauma and financial strain simply to conform to societies high and unrealistic standards of beauty? Okay, it might make me feel more confident to look a little more like the average woman. Then again, it might not…
Societal standards of body beautiful
Our perception of body image and beauty is arguably increasingly influenced by social media, particularly Instagram. Heavily airbrushed, edited and filtered selfies are everywhere to be seen. With a smartphone, we can all look like a celeb from a magazine spread!
But this is misleading, unrealistic and unattainable. I can’t relate to the pouty, posers of Instagram. Honestly, can anyone?!
Diverse bodies are sadly under-represented in the media. This is starting to improve but there is still a long way to go before the presence of disabled bodies on our screens becomes mainstream.
Purple Tuesdayis an International call to action with the aim of improving customer experience for disabled people. It is vital that we, disabled people, are able to access the same services as anyone else.
Purple Tuesday is a year-round initiative that has the power to change lives!
Working together to make businesses and organisations more accessible and inclusive is mutually beneficial.
Facts & Figures
20% of the UK population (around 12 million people) and 15% of the world’s population have some form of disability.
Disabled people make up the world’s largest minority group.
Last year over 750 organisations took part, making a collective 1,500 decisive, practical commitments towards positive change.
The Purple Pound – What is it?
The consumer spending power of disabled people and their families is worth £249 billion and is rising by an average of 14% per annum. Worldwide, the Purple Pound equates to a staggering £2.25 trillion, yet less than 10% of businesses have a targeted plan to access this disability market.
Added Expense of Disability
• Heating ~ disabled people often feel the cold much more than able-bodied people
• Electric ~ charging technology and equipment such as wheelchairs, non-invasive ventilators (BiPAP/CPAP)
• Extra laundry costs
Obstacles Disabled People Face when Shopping
• Lack of disabled toilets (Changing Places)
• No lifts/lifts broken
• Narrow doorways
• Non-automatic doors (meaning we have to wait for someone to open the door for us)
• Narrow aisles
• Unreachable shelves/items
• Cashpoint/checkout too high to reach
• Physical barriers e.g. ‘Wet Floor’ signs, clothes and other items on the floor
• Poor customer service
• Lack of clear, visible signs
• No audio description available
• Inappropriate lighting, music (too loud) – affects those with sensory disabilities such as Autism
• No staff available to assist disabled customers
He attended university, completed a placement year, works full-time, started his own business, and is now on the Great Britain Air Rifle Talent and Development Squad. Josh is able to drive a wheelchair accessible vehicle (WAV) and has lived independently since leaving his parental home at 18.
1. University ~ Can you tell us about the process of putting a care package in place and living independently as a disabled student?
During my last year of college, I expressed an interest in going to university. After research with my social worker and factoring my needs and desires, we identified appropriate universities that fit my criteria. I then had to decide on a live-in carer or a care agency. I opted for the agency route in order to be as independent as possible.
Once accepted by the university, I sorted accommodation and started looking for care agencies. My social worker provided me with a list of care agencies registered with the CQC, but it was down to me to make arrangements. The first care agency turned out to be unpleasant! So, after 4 months, I switched to another agency who I remained with for the duration of my university experience.
2. How was your overall university experience?
My overall uni experience was, let’s say, fruitful! From falling asleep in my wheelchair in front of the mirror to having university staff put me to bed within the first week because I was so drunk. It was clear that I was going to make the most of my 3 years at uni!
I got involved with numerous societies and activities to keep myself active and included with the student culture. I had a fantastic time and never experienced any discrimination or abuse. The staff made me feel at ease, allowed me to be as independent as possible, and provided access to necessary resources.
I graduated with a first class honours in IT Management and Business and, 4 years after graduating, I was invited back to receive an Honorary Masters in Technology.
3. You carried out an internship with Hewlett Packard during your studies, and then worked as a cyber security manager. What, if any, challenges did you encounter in finding employment and how does your disability affect your working life?
The general employment process with assessment days, face-to-face interviews and telephones interviews were fairly seamless. Most employers are extremely accommodating if you give them notice and make them aware of your access needs.
I do remember one assessment day with a popular car manufacturer where the activities impacted my ability to take part due to my physical requirements. This may have affected their decision to not employ me, even though I was just as capable, if not more so, than the other candidates. But apart from that, I have not had any issues finding employment.
Obviously, my disability limits me physically. However, as I work in technology it does not affect my ability to do my job. Yes, working full-time is not easy for me, but it’s also important to remember it’s not easy for able-bodied people either.
I have always been the sort of person who just gets on with it. I also believe that with technology making everything more accessible for disabled people, in most cases, our disability should not affect our ability to work. If you have any employer with an inclusive work culture, who is willing to support, understand and give you flexibility within the work place, then for sure you can work!
4. You returned to university to speak to students about entrepreneurship, and inspire them to start their own businesses. How did this make you feel and why do you think it is so important to encourage other disabled people to pursue any entrepreneurial aspirations they may have?
This gave me a sense of achievement and fulfilment. I believe that sharing experiences, whether positive or negative, helps others to follow their own passions and aspirations.
There is a general consensus that employment for disabled people is difficult to find, and arguably this could be due to the lack of inclusive employers. This is what makes the entrepreneurial world an attractive proposition for disabled people – it is flexible, offers them ability to work around their needs, and also avoids the hardship of being in a culture that is not disability confident.
5. You ventured into self-employment and founded AbleMove. Why was this so important to you?
I have always wanted to start my own business. When I realised I could create a product to make travel more assessible for disabled people, it was a no-brainer decision for me.
When you’re working on something you’ve created and can see the life-changing benefits, there is a real feeling of fulfilment.
Winning the award gave me a sense of personal achievement and recognition. It gave me a fresh perspective on developing my own business and the benefits it can provide versus working for a large company.
The prize money and a business deal with easyGroup Ltd enabled me to give up my full-time job in order to pursue my own business. This allowed me greater flexibility regarding how I manage my disability.
7. Prior to winning the award, you had to move home and rent within the private sector. What challenges did this present?
The challenges with the private rent sector (PRS) are vast, especially given almost 85-90% of PRS homes are inaccessible for wheelchairs.
After applying for the Stelios Awards, I was told I had to move out of a good sized two bed apartment due to the landlords requiring their property back. Having lived there for 3 and a half years, it was time to start the dreaded challenge of finding a needle in a haystack.
It’s purely pot luck if you can find an accessible house to move into straight away that doesn’t need any adapations.
After fighting with the council and various estate agents, we eventually managed to find a property on rightmove. Now, when moving home I need to consider carers since I rely on them throughout the day. My main PA (personal assistant) was unable to continue working for me, and so I had to re-jig and was then only able to maintain one PA.
Finding an accessible property and then having to manage your care situation around it is extremely stressful, tiring and irritating. On top of this, I was working full-time, getting the business of the ground, doing weekly exercises and training for the Great Britain Shooting Talent and Development Squad.
8. Can you tell us about your invention, the easyTravelseat. What is it and how does it benefit disabled people?
My travelling experiences involve being manhandled from wheelchair to aisle chair and then manhandled again onto the aircraft, which is highly undignified and uncomfortable. I therefore sought to create something that would help me travel in a more comfortable and dignified manner.
The easyTravelseat is a sling/seat combination that is designed to work as an in-situ piece of equipment. It is placed in your wheelchair, and you then remain seated in the easyTravelseat until you reach your destination.
For instance, when flying, you would remain comfortably and securely seated within the easyTravelseat for your entire journey through the airport, onto and during your time on the aircraft and off again.
Once I created it, I realised the many benefits it offers disabled people. It allows users to travel in a more safe, dignified and comfortable way, on all modes of transport. Furthermore, it opens up leisure opportunities such as canoeing, kayaking, skiing and so on. The easyTravelseat enables users to be transferred quickly and easily without having to be manhandled. The user is comfortably seated with their own cushion, a gel pad or foam.
9. Where did the idea for the easyTravelseat stem from, and what did the development process involve?
The development process involved researching the types of equipment already available, and the demand for such a product. I conducted market research to determine whether wheelchair-users would find the product useful. Then we identified a concept and progressed to prototyping in order to test how the seat would work. We then moved on to the point of manufacturing the seat and getting the required medical marking and approvals in place. During this process we had been working initially with airports around the lifting side of the device, including our sling manufacturer and then an airline. We started production in February 2019.
10. Does the easyTravelseat cater for disabled people of all shapes and sizes?
The easyTravelseat will cater for the majority of disabled users with the exception of very young children, bariatric passengers or people with extreme contoured seating.
11. How does the easyTravelseat compare with similar products on the market, such as the ProMove sling or the NEPPT Transfer Evacuation Sling Seat?
The difference with the easyTravelseat is the specific design and application of use for aircraft, whilst ensuring passenger comfort. It allows users to be moved around the aircraft, including during an emergency, and to then disembark the aircraft in a much safer, dignified and comfortable manner. All other slings are designed to be removed and offer no protection or comfort when in-situ.
12. What other assistance do you think airlines could and should be offering to disabled passengers?
I think the most important area airlines should be focusing on in the immediate is the loading of wheelchairs, both electric and manual, to prevent damage. It also concerns me the people on the ground lifting these wheelchairs are at risk of causing serious damage to themselves. There is industry equipment to load wheelchairs onto an aircraft without having to manually lift a wheelchair. This would help the loaders and reduce the amount of damage to both the chairs and the airport staff. Also, a secure area in the hold may also be advantageous to prevent luggage damaging wheelchairs during turbulence.
I also think the UK should be pushing (as Canada has done successfully) the airlines to provide free tickets for a carer when flying with a disabled person. After all, the airlines make it a necessary requirement for WCHC passengers who cannot move without any support to fly with a personal assistant/carer.
Airlines should also be addressing the toileting situation inside the cabin too. It is currently impossible for the majority of disabled passengers to access the toilet whilst flying.
Regarding hidden disabilities, there are those who are much more calm when they are surrounded by objects which are all different colours.
Long term, all airlines should be looking to allow wheelchair-users to remain seated in their wheelchair, inside the cabin, during the flight.
13. What does the future hold for you and your business?
The future is bright for easyTravelseat! We are off to a steady start with interest across the globe. We believe in an accessible aviation world and are able to provide an immediate solution to help reduce some of the significant problems with maintaining safety, dignity and comfort when flying with a wheelchair.
We will now look to ensure easyTravelseat is easily accessible in as many countries across the globe as possible in the coming years.
Picking a university can be a daunting task at the best of times – you need to try to chose one that matches your desired subject with predicted grades, and be in a location that you’ll be happy to live for the next three to four years. But for those who require a wheelchair trying to make the right choice can be a much greater challenge. Let’s run through some of the things you need to consider, as wheel as some universities that really stand out as being the most wheelchair, power chair and mobility scooter friendly.
City or Campus?
There are two types of universities in the UK, city and campus universities. Many of the best rated unis in the UK are town based – Cambridge, Oxford, and Durham for example, are town based. This can be a challenge as accommodation, lecture rooms and tutorials may all be in different locations and require navigating old city streets. However, some of the older universities are totally self-contained, and you may hardly need to leave the confines of the college walls during your stay. So be sure to check exactly where you will be housed and where your lectures and tutorials will be if you apply to a city university.
Campus universities are generally more wheelchair friendly because everything is on one site and most buildings are modern and accessible, and there will often be shops and other amenities on site too. This can make your day-to-day activities much easier, but if most of the socialising takes place in a nearby town, you may feel isolated if there are not good transport links in place, although a good mobility scooter or powerchair may be the solution.
As mentioned, few students look at the accommodation before going to uni, but this is probably the most important consideration. Many newer city universities have accommodation in mid-rise buildings (4 to 11 storeys) which although are usually modernised with lifts, are not always the most suitable option for wheelchair users.
Ideally, you should be able to get a room or apartment that has full wheelchair access with accessible bathrooms and kitchens. Kitchens should have low sinks and worktops, and ideally, there should be a wet room that you can roll your wheelchair into.
Disability Support Service
Contact the Disability support service at the earliest opportunity to discuss your needs and the facilities on offer. Pay them a visit on the open day too and have questions ready to ask – make sure they are geared up to support you fully.
Attend Open Days
Before applying to any university you should attend an open day. At the open day be sure to ask about accommodation too (many people forget this part) and take time to visit the halls of residences or area with student houses. Ask to see lecture rooms and tutorial rooms to check wheelchair access yourself.
Look Beyond the Campus
It is important to look beyond the university grounds as with both city and campus universities you will need to have easy transport to and from them. Some newer universities are often located in parts of town far from national railway and bus stations which can make it very difficult if you need to leave and arrive by public transport.
The terrain is also important. Cities such as Edinburgh and Exeter may provide modern university facilities, but many of the roads are very steep and wheelchair users will struggle to navigate all streets. It might be sensible to look up the most wheelchair friendly towns in the UK and then see which ones have universities offers courses you’re interested in. If you do head to a hilly university town, you might need to buy a new wheelchair that is lightweight and more suitable for the terrain.
Which Is Best?
There really is no “best” university for wheelchair users – every university works hard to accommodate all students equally, but one that does stand out is Loughborough University.
Loughborough is rated as one of the best campus universities (named Times University of the Year 2019) in the UK thanks to its top class facilities, access to green spaces and a good community feel in the student village. Loughborough’s Disability Office says that they support a range of long-term conditions as well as wheelchair users.
For a city campus university, here’s an interesting account of study at Canterbury Christ Church University. As you can see, some universities are extremely accommodating and will provide an excellent learning environment no matter what your abilities.
Are you, or have you recently attended, university as a wheelchair user? Please share your experiences below.
This guest post is provided by CareCo who provide mobility advice and support through their website and UK network of showrooms.
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!
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.
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.
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.
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.
On Friday 5th April, I attended an evening performance of Les Miserables at the Birmingham Hippodrome. Over the years, I’ve seen several different shows at this theatre, and have always been impressed with their accessibility.
I am a non-ambulatory wheelchair-user, and so my primary focus is wheelchair access. However, the Birmingham Hippodrome is continually making improvements in order to be more inclusive and cater for all disabilities.
We all know how difficult it can be to book tickets for shows and concerts when you have a disability. But I can honestly say, I’ve never had a problem booking wheelchair-accessible seating at the Birmingham Hippodrome. I’ve never had to dial the booking line the minute tickets go on sale, which is often the case for other venues, and there’s even a choice of where to sit!
The Arcadian is a manned carpark situated just around the corner from the Hippodrome. It offers sufficient disabled bays and cost £7:50 for the duration of our stay (around 4 hours). This is Birmingham – parking aint cheap!
Wheelchair Access ☆☆☆☆
The Birmingham Hippodrome, refurbished in 2000, is easily accessed via the main entrance. There are multiple double doors as well as an automatic door, with security staff always on hand to assist if required.
There is then a wide, gradual ramp to the right of the central stairway. This leads to two large glass lifts/elevators. Again, there’s always multiple members of friendly staff available to assist with doors, directions and the operating of the lifts.
We sat on one of two raised platform areas at the back of the Stalls (lower level), known as the Lounge. Despite being at the very back of the audience, we had a great view of the stage, and since we were elevated, we didn’t have to head-dodge!
There was also plenty of leg room and space for multiple wheelchairs, so it was very comfy.
There are multiple accessible toilets, all of which are clean, spacious and impressively well-maintained. They even smell good! From my point-of-view, the only thing lacking in this department is the addition of a Changing Places facility, which would no doubt be a huge asset. For this reason alone, I had to deduct a star from my rating.
In 2018, the theatre made a conscious effort to be all-inclusive by installing gender neutral toilets.
“The theatre offers a programme of signed, audio described and captioned performances. Touch tours have been introduced, so blind and visually impaired can familiarise themselves with the props and scenery before attending a performance and assistance dogs can be accommodated with care being provided for the dog during each act.” ~ Birmingham Hippodrome website
Let me know if you can relate to any of the following scenarios…
Stranger: There’s only a few steps. Me: I can’t walk, hence the chair. Stranger: They’re only small steps. Me: Nope, still can’t walk I’m afraid. Stranger: Oh, not even with assistance? Me: Not even with assistance. Stranger: Not even a little bit? Me: Not even a little bit. Stranger: Not at all? Me: Not at all.
Awkward, deafening silence…
Stranger: There are steps but we can just lift you (in a powered wheelchair). Me: Thanks but this chair is really heavy. There’s no way you’ll lift it.
Stranger then attempts to lift me in my wheelchair, only to complain of the weight.
Stuck in a long queue of fit, young able-bods who look me up and down (in my wheelchair) but still choose to wait for the one and only lift/elevator rather than take the stairs, which would be much quicker!
A young driver in flashy sports car races into a blue badge bay and gets out without displaying a badge. Me: Excuse me, have you got a blue badge? Driver: No! Have YOU?! Me: YEP! (waving my blue badge at the driver while sat in my Motability WAV).
Being unable to access public disabled toilets because they’re being used for storage!
Entering a public disabled toilet after a mother and baby have just used it. It absolutely stinks and there are used nappies on the floor!
Guy: okay, can I be honest? Me: yes. Guy: let’s be real, you’re no one’s type. Are you! Me: erm, thanks!
Me: I can’t walk. I have something called muscular dystrophy. Guy: oh. Right. Okay… Me: yup… Guy: so is that something you could change if you work on your fitness? Me: no. Afraid not. Guy: not even if you try really hard and actually make an effort?
Me: I’m a wheelchair-user. Guy: oh right, what’s wrong with you? You self-propel, yeah? Me: no I can’t do that, and there’s nothing wrong with me. Guy: but I’ve seen some really fit girls in wheelchairs. They play basketball and all sorts! Me: yeah, that’s never gonna be me. Sorry.
Me: I’m a wheelchair-user. I can’t walk at all. Guy: oh, okay. What happened? Me: nothing happened. I have something called muscular dystrophy. Guy: I just Googled it. Wow that really is a disease isn’t it!! Me: fear not, it isn’t contagious.
Guy: oh, so you can’t walk at all? Me: yeah that’s right, I have muscular dystrophy so I can’t weight-bear. I use a powered wheelchair. Guy: okay…. Me: it’s fine if you want to ask questions. Guy: so…you don’t have sex then?? Me: why’s that? Guy: well, I’m guessing you can’t feel anything…you know.
Woman: aww, I’m sure you’ll find a nice guy in a wheelchair to date! Me: or just a nice guy!?
Social Worker Review
Assessor: are you able to make your own decisions? Me: yes. Assessor: always? Me: yes. Assessor: (with a sceptical expression) but…if you needed advice when making a decision, who would you ask? Me: myself!?
Stranger, whilst leaning over, “It’s good to see you getting out and about”
At a restaurant with a group of friends, all of whom are able-bodied. Waiter comes to our table, looks at me in my wheelchair, and starts rambling about a friend of his who lives near a Paralympian. None of us know quite how to respond.
At the pub with a friend who goes to the bar to get us drinks. When she returns, she says a guy at the bar who she knows told her he didn’t realise she’s now a carer. She had to stop and think for a moment and then replied, “I’m not her carer. I’m her friend! We’ve known each other almost 20 years!”
The guy looked absolutely dumbfounded.
Driving & Mobility
“Wow, you learned to drive? Is that safe? Did you have a special instructor and a special test?”
“Your wheelchair’s a bit battered. Looks like you could do with a new one! I suppose you just call and get a replacement through the NHS?”
“Do you have to have training and a test to drive that thing? [my powered wheelchair]”
“They [wheelchairs] cost HOW MUCH?! Why are they so expensive? Can’t you just save up?”
“Oh, you went to university? Good for you! It’s something for you to do, isn’t it. How did you manage though?”
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 #IWD means to me
Light is often shone on independant 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 every-woman.
The women we are not aware of. The women behind the scenes who just get on with life. The single mum’s. Those living with debilitating conditions who 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, tanacity, 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 recognition. Being loved unconditionally, appreciated and making a difference to just one person is EVERYTHING.
The 21 year-old who has Spinal Muscular Atrophy Type 2, moved from the Ukraine to England at the age of 6. She currently lives in Bradford, Yorkshire with her Mum and younger sister.
Kat was good enough to talk with me about life with a disability, her experience as a physically disabled model, her growing YouTube channel and the issues she campaigns for.
Spinal Muscular Atrophy
1. Kat, please tell us about your disability and how it affects you.
I was diagnosed with Spinal Muscular Atrophy type 2 when I was only a year old. This is a genetically inherited, progressive muscle-wasting condition.
I was told that essentially my spinal cord doesn’t communicate with my muscles properly. This means that over time my muscles slowly lose any strength they once had.
SMA2 affects all my muscles. This limits my mobility and my breathing. I’ve never had the ability to walk but I used to be able to crawl until around the age of 10. I’m now non-ambulant and a full-time wheelchair user.
When I was younger, I was often in and out of hospital because I struggled to fight off infections. A common cold would often develop into something much more serious. As a result, I was unable to attend school and was home-tutored instead.
I guess I’ve had quite an unconventional, drama-filled life, but I don’t know any different. This is my normal.
Life as a disabled Model
2. How did you become a model and what does this mean to you, as a young disabled woman?
I’ve always enjoyed being creative and experimental with my style. Not only did Instagram provide a platform for that creative outlet, it also encouraged me to express my style and share my life and experiences with people who are leading similar lives.
When I was younger, I had never seen anyone with a disability in the fashion world, and so I never imagined that someone like myself, with a physical disability, could be a model.
One day, Instagram suggested that I follow Zebedee Management. After scrolling through to find out more about them, I quickly fell in love with what they’re all about and instantly knew I wanted to be a part of their family.
I applied after attending a fashion show hosted by Zebedee Management, and was then invited to attend a shoot. I never imagined myself as a model but being accepted by Zebedee has given me a massive confident boost!
Joining Zebedee as a disabled model has made me proud to be able to represent young disabled women, like myself, in the media. This opportunity has enabled me to empower and act as a role model for the younger generation.
I feel privileged to have worked on three wonderful campaigns, all of which are very special to me.
I’ve made it my mission to embrace and love my body after years of self-loathing. It was therefore a really special experience for me, especially to have found the confidence to bare all on camera and share my scoliosis story.
I was fortunate to be chosen as one of their ambassadors, and to work alongside seven very talented people. The four LGBTQ+ campaigners, including myself, were partnered with four incredible artists who painted our portraits. The portraits were then displayed throughout the UK during the Birmingham, London and Brighton Pride weekends.
Our portraits went on to be sold at auction and all proceeds went to LGBTQ+ charities.
Visibility, diversity and inclusion is so important, and I’m so proud to be able to share my perspective and represent those with disabilities in the LGBTQ+ community. Unfortunately I do believe that we are underrepresented and I’d love to improve this by talking about my sexuality more.
It is only two years since I came out, so I’m still learning about myself and the community. I’m very fortunate that my Mum accepts me and my sexuality, although my family back home in the Ukraine are not yet aware.
3. Kat, could you please tell us about your Youtube channel?
I started vlogging because I wanted to share the highs and lows of my life, as a young disabled woman living with SMA2. Not only that; I also wanted to raise awareness of the fact that my life is actually pretty ordinary for a 21 year-old woman, despite being a full-time wheelchair user. I live at home with my Mum, younger sister and our dog named Khloe Kardashian. I love to go out shopping, clubbing, meeting friends and traveling.
I was inspired to start my own Youtube channel after I became obsessed with other vloggers whilst in hospital. Back in 2012, I was subscribed to many of the famous ‘Brit crew’ content creators, such as Zoe Sugg and Louise Pentland. I found myself watching their YouTube channels for hours and I always knew it was something I wanted to pursue.
I’m proud to be a disabled creator and put the platform to good use by sharing my experiences. I hope my contribution offers a realisitic and informative insight into what life is like with a disability, and that society learns to understand us (disabled people) better.
I love the YouTube community and feel like it’s a second family. I can definitely see myself working in the media in the future.
I also love that YouTube allows viewer anonymity. Anyone can observe my vidoes without needing to engage with me directly, thereby eliminating any potential awkwardness.
Some people are curious to ask disability-related questions but are often too shy or afraid to do so. They might be scared of saying something that may come across as inappropriate, or they may not know how to address topics appropriately.
I’m open to discussing most topics, however taboo they might seem. For me, it’s about trying to encourage people to interact and engage with me and my videos, as I love to educate, inform, raise awareness and simply chat with curious folk!
4. You describe yourself as a disability activist. What are the issues that are most important to you?
I grew up feeling super self-conscious about my disability, to the extent I would actually try to ignore it in the hope that one day everything would be ‘normal’. But when you think about it, what is ‘normal’, anyway?
I believe that we should embrace our differences, encourage acceptance and celebrate diversity in all its forms!
I think that society in general still interacts with us (disabled people) in a very condescending and neglectful manner. People are either sweeping us under the rug, or using us as tokens of diversity and not really accepting or understanding our lifestyles. It’s 2018 and frankly, it’s tiring!
I’ve been involved with a number of opportunities, such as speaking on ITV national News about my short film, which I released last year with the help of Fixers UK. I also attended an event in London with FixersUK, where I spoke to sponsors about my film and promoting disability awareness.
I have also presented talks, and held workshops with students and tutors in schools and colleges. As well as participating in panels at the WoW festival, I recently took part in a discussion for BBC 5 Live about how disability can be better represented in the fashion and beauty industry.
I’d like to thank Kat Pemberton for taking the time to answer my questions.
Following on from Paralympian Jonnie Peacock’s influential appearance on last year’s Strictly Come Dancing, the latest line-up includes Para-triathlete Lauren Steadman and acid attack victim Katie Piper. The former has no lower right arm, and the latter suffered significant facial disfigurement following a violent attack when she was only 24 years of age.
The inclusion of these two young women on such a high-profile BBC One talent show, with viewing figures in excess of 11 million, will no doubt play a big part in the promotion of positive views on disability and diversity, as well as encouraging body confidence.
Katie Piper – Acid attack victim and charity founder
35 year-old TV presenter, author, philanthropist and charity campaigner Katie Piper was left permanently scarred after a vicious acid attack in 2008. The former aspiring model has subsequently undergone over 60 necessary surgical procedures.
The industrial strength sulphuric acid that was thrown in Katie’s face has caused extreme damage and left her with sight, swallowing and breathing issues, requiring ongoing, invasive treatment.
The perpetrator was instructed to carry out the callous attack by an abusive former boyfriend whom Katie had met online.
Over the past decade, Katie has found admirable strength and persevered through the most trying of times. She bravely shared her story in two autobiographies and the 2010 BAFTA winning documentary, ‘Katie: My Beautiful Face’.
Katie has written four more self-help books, fronted several televised shows relating to body disfigurement, and most notably established The Katie Piper Foundation, to support fellow victims of acid attacks. She is also now happily married and has two young daughters.
Katie & Strictly Come Dancing
Prior to being paired with professional Strictly dance partner Gorka Marquez, Katie said, “there was a time not long ago that I wondered if I’d ever be glamorous again and now I know that is going to happen!”.
Katie Piper is all about embracing body confidence and celebrating diversity, whilst raising awareness of the consequences of acid attacks, which is a crime that is sadly on the increase. Her appearance on this hugely popular primetime BBC show will enable her to reach a wider audience and spread that message.
Piper is acknowledged to be the most anxious of this year’s celebrity contestants. Having really struggled to overcome the nerves during her first performance of a Waltz to Adele’s ‘when we were young’, Katie scored 17/40. Her confidence was knocked by negative feedback from the judges, particularly Craig Revel-Horwood who did not hold back.
Katie has since revealed, “it’s funny because like in the first week it did really affect me and it was silly because whenever I would wake up on Sunday at home it was like your 35-years-old and it’s an entertainment show, calm down.”
Katie and Gorka received their lowest score when they returned the following week with a Paso Doble. The choreography was intended to reflect the motto of the song to which they danced; ‘confident’ by Demi Lovato. However, Katie was visibly close to tears upon hearing the judges comments. While Darcy attempted to focus on the positive attitude with which Katie possessed, the others described her as “Stompy”, “plank-ish” and in need of improvement.
Nevertheless, the couple were supported by the viewing public and voted through to week three, and thankfully so, since their Foxtrot earned them 22 points – their highest score.
Katie says, “by week four I was in the groove, laughing and enjoying it and it was okay. You go in the green room afterwards and the [judges] are just normal, nice people.”
Sadly a Jive was to be Katie’s last dance on Strictly. Though disappointed to leave the competition relatively early, Piper admits though she overcame her nerves, insecurities and improved whilst on the show, she is not a natural dancer, and wouldn’t have wanted to be patronised or pitied.
Lauren Steadman – Paralympian
26 year-old Paralympian Lauren Steadman, originally from Peterborough, was born without a lower right arm. However, this has never prevented the determined sporting star from pursuing her dreams.
This Elite Para-triathlete is already a Double World Champion, Paralympic silver medallist (Rio 2016 – Women’s PT4) and six times European Champion.
Encouraged by her uncle who was himself a triathlete, she began competing in her local swimming team from age 11, representing Team GB. Two years later, Steadman took part in her first international competition in Denmark, as well as the 2008 Beijing Paralympic Games. Intent on pushing the boundaries of possibility even further, she switched sports, from swimming to the triathlon, after the London Paralympic Games in 2012.
Alongside her demanding athletics career, Lauren has pursued academics and achieved a first-class Psychology degree in 2014, followed by a Master’s in Business and Management.
Lauren recalls, “In one year I had taken all three titles – British, European and World Champion – for the first time, and graduated from university with first class honours. It really couldn’t get much better than that!”.
Lauren & Strictly Come Dancing
Lauren signed up to appear on the latest series of Strictly Come Dancing as she wanted to set herself a new challenge, learn another skill and test her “own levels of uncomfortableness”. When asked what she was most excited about she replied, “pushing myself and any boundaries I may encounter with having one arm. I like to succeed even if the odds are against me”.
With no experience whatsoever, Steadman claims her friends and family would describe her amateur dancing style as that of a baby elephant!
The glitz and glamour of Strictly is indeed a stark contrast to her sporting life. Not only that, dance itself is a very different discipline to what she is used to as an athlete. Dancing requires fluidity, expression, emotion and creativity, rather than the rigidity and stern focus necessary for triathlon events.
Despite all the odds, Lauren and partner AJ Pritchard stepped out with an impressive Waltz in the opening week of the show, scoring 25/40 from the four judges. The couple dropped 3 points with their second dance; a Charleston, and were awarded 20/40 for their slightly awkward Cha Cha Cha in week three. However, they returned on top form the following Saturday with an elegant Quickstep, earning them 25 points.
Their latest performance marks a first in Strictly history – a Contemporary dance, newly categorized as the ‘couple’s choice’. It was a highly personal interpretation with choreography designed to represent Lauren’s personal journey, her defiance and disability. The emotional dance was awarded with a standing ovation from the studio audience and 24 points from the judges.
Lauren has chosen not to wear a prosthesis during her time on Strictly. Preferring that her disability remain visible, she is keen to break down barriers, challenge convention and encourage other disabled people by demonstrating how dance can be adapted to suit different bodies and abilities.
For Lauren, the rollercoaster Strictly journey continues…