Mentoring Kids

Very few people know that I used to mentor and teach art to primary school children.

I’ve always found it easy to interact with kids. They say it how they see it – no agenda, no bullshit. And I have a very low tolerance for bullshit!

I’d happily take on a room full of kids over a room full of adults, any day!

I mentored one particular lad for about 18 months. He had just turned 8 when I first met him. He came from a deprived area, one of four siblings, his dad was in prison and his mum…well, let’s just say she wasn’t as conscientious as she should or could have been.

Later down the line, his 12 year-old sister accused one of the younger male teachers of indecent assault. Blimey, I remember that day vividly!

The lad, (let’s call him Bob!), was a lovely kid – really polite, always happy to see me (nice to be appreciated, eh).

Bob really struggled with reading and writing. To begin with, he refused to even try. All he wanted to do was play games. Time for negotiation – reading first, then we play games. He would often look up at me to read out the longer words for him. No mate, give it a try first. Break it down and work it out.

Admittedly, the school books were pretty crap, so I bought some more interesting ones to motivate him. He liked dinosaurs and pirates so that’s what we mostly read about.

I had studied art at university and he soon noticed that I could draw. So from then on, every session – “draw me a dinosaur!”, “draw me a pirate!”

Flipping heck, kid! How about you draw me a dinosaur!

In all honesty, I didn’t mind. It was nice to see him enthusiastic about something.

Despite my very obvious disability, in all that time, Bob never once questioned it – not that I would have minded if he did. From the get-go, I was just Caz the mentor.

He questioned everything else, mind you!!

~ How old are you?
~ What do you do?
~ Are you married?
~ Do you have kids?
~ Why not?
~ Where do you live?
~ Who do you live with?
~ Can I see your ID? (Yes, I showed him my ID to which he responded, “THAT’S NOT YOU!”)
~ What’s your real hair colour?
~ Can you dye your hair so I can see it, please??

NO, KID!!

I miss Bob. Happy days.

One of Those Days…

Nosey Bints, Parking Tickets and Frustrating Phone Calls

They say bad luck comes in threes…or is it multiples of three? 

I’m generally fairly tolerant with day-to-day annoyances and ignorant people.

As a wheelchair-user, I’m used to complete strangers who feel entitled to stare or approach me for interrogation. They tend to be so ridiculous I choose to simply laugh it off.

Don’t sweat the small stuff, right.

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!

As I say, some days you’re just not in the mood.

Tomorrow will be kinder…we hope!

Anyone got any rum??

Disabled Life | Daily Frustrations

As some of you may know, I have the rare condition Ullrich congenital muscular dystrophy, and consequently, I am a full-time wheelchair-user.

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!)

Rant over 😊

Have a lovely, lovely day 👍🏻

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. 

Living with a Rare Condition | Mental Health

Yesterday, I discussed my current struggle to overcome a chest infection (not to be underestimated for those with muscular dystrophy).

Of course, living with the rare muscle-wasting condition UCMD has many physical implications on my body:

~ joint contractures, scoliosis, progressive weakness, inability to weight-bear and respiratory decline ~ 

Inevitably, there is an additional impact on my mental health.

For the most part, I am upbeat and stay as active as possible. But admittedly, recurrent chest infections often get the better of me. It can feel like you’re fighting a losing battle, and frankly, it is bloody hard to remain optimistic when life is completely put on hold for months at a time, during which I’m unable to leave the house.

The considerable down-time makes forward-planning almost impossible. Over the years, I’ve missed out on many events and cancelled numerous birthday celebrations due to ill health. It is difficult to commit to social arrangements and accept invitations for fear of letting people down, which then leads to guilt.

When ill, I may…

• Have to cancel plans
• Not respond to calls or messages right away
• Be unsociable
• Be impatient
• Not want to talk
• Be unable to focus or maintain attention
• Spend a considerable amount of time resting and/or sleeping
• Lack motivation
• Be unproductive
• Feel pessimistic, frustrated and emotionally exhausted
• Feel isolated yet unable to see anyone


When I’m ill, I am out of action for a month, sometimes longer. The days are long, tiring, monotonous and utterly unproductive. It is easy to succumb to despair, so for me it is essential to establish a focus and a purpose.

Mental Wellness…

• Rearrange any cancelled plans
• Don’t shut people out
• Accept support from loved ones
• Pet therapy ~ a cuddle from your beloved pet can work wonders!
• If possible, go outside, look up at the sky
• Give yourself a daily reminder of at least 3 positive things in your life
• Say out loud, “I will get through this”, “I will get better”, “I won’t be defeated”
• Don’t overexert yourself. Allow yourself the time and space you need to rest and recover


Life is a gift, but it can also be a bit shit sometimes! Always remember, you are stronger than your struggles. 💪


Related Blog Posts:

Life, Stress & Coping Strategies

Disability & Self Worth | You are not unloveable

Interview | Spoonie Warrior

Wheeling Through Life | A Brief History

Cough & Cold Season

A Life Update | Muscular Dystrophy & Chest Infections

Once again, I’m out of action with a chest infection. Although unpleasant, this isn’t generally a concern for the average person. But for those like me who live with a neuromuscular condition (in my case, UCMD, a rare muscle-wasting disease) a chest infection is not to be taken lightly. It can develop scarily quickly and lead to more serious complications such as life-threatening pneumonia.

I have always struggled with chest infections. Every time I catch a common cold, it heads straight to my chest. As a child this necessitated a course of banana medicine (Amoxicillin), chest physio and a week off school (okay, so it wasn’t all bad).

As I have aged and my condition has deteriorated, I now find chest infections much more difficult to cope with. It can take me a month, sometimes longer to get back to any sort or normal. In the meantime, life comes to a complete standstill.

Due to the severity of my impaired lung function, I struggle to cough effectively and clear secretions, making the seemingly simple act of breathing incredibly difficult. As a result, I become totally reliant on my BiPAP machine, and find removing it for a mere 10 minutes a major challenge.

BiPAP machine ~ noninvasive ventilation

When I feel myself getting ill, I throw everything at it:

• Antibiotics
• Steroids
• Expectorants
• Nebuliser
• Respiratory physio
• Rest
• Stay hydrated and eat as much as possible for energy and sustenance
• BiPAP to support breathing

But in the end, for me, it really is a case of waiting it out and remaining as positive and defiant as possible.


Obviously, this is just my personal experience. There are many forms of muscular dystrophy, and each individual reacts and responds differently to respiratory illness. But one thing is true for all of us –

chest infections are no laughing matter!

You may often see members of the NMD community banging on about infection control and the importance of the Flu jab, and with good reason! For us, this really is a matter of life or death.


Related Blog Posts:

Top Tips: Staying Well in Winter

Emergency Care: My Experience

Abulance Action | MDUK

Lost Time | Chronic Illness

Muscular Dystrophy | A Guide for Parents

Disability & Self Worth | You are not unloveable

I think most people living with a chronic illness, disability or mental health issue can relate to this quote, at least to some extent. I know I do.

I am limited by my physical disability (congenital muscular dystrophy), despite the claims by some that you can do anything if you just try hard enough. As a non-ambulatory wheelchair-user with a muscle-wasting condition, I’m afraid there are certain things I cannot do.

I am heavily reliant on others to carry out daily activities such as cooking, cleaning, locking doors, opening and closing windows and so on. I also need help with personal care tasks like getting in and out of bed, dressing and bathing. This can be undignified, thus affecting my confidence and making me feel incredibly self-conscious and utterly undesirable. After all, who wants their boyfriend to shower them?!

I HATE asking people to do things for me, as I then feel a burden, a nuisance, an annoyance. Having to ask people to simply open a bottle or a can at the grand old age of 30 is frankly embarrassing (for me).

Sometimes I refuse to speak up and request help. Call it pride or sheer stubbornness. But there are other times I have no choice. Like it or not, I have to ask, to instruct, to explain.

For the most part, I’ve managed to conceal the extent of my disability from those around me. Many people, friends included, think I am much more able and independent than I actually am. Again, put it down to pride. But there are some people I can’t hide this from. Family members, of course, but also anyone I am romantically involved with.

Due to the nature of my disability and all the added extras – care requirements, dependency, restrictions, the inability to be spontaneous – I always believed myself to be undeserving of love. I genuinely thought *think* of myself as an unnecessary burden. Why would anyone put up with me, my weak, crooked body and all of my baggage when they could choose to be with someone else?

As a result of this and a lifetime of rejection, I put up barriers and distanced myself from society; a form of self preservation. Being told repeatedly that I’m not good enough, I’m “no one’s type”, and “too much to take on” has made quite a negative impression on my self-esteem.

Now, I don’t want to ramble or get too personal. But I am slowly starting to trust and believe I am worthy of love and companionship.

They say there’s someone for everyone. The cynical part of me still questions this. But maybe, just maybe, there is.

It takes an extra special person to accept me and my care needs. To take on, without question, a pretty drastic lifestyle change. To see past the wheelchair, the crooked body, the medical equipment and the disability itself, and simply love me for me, unconditionally. To try to convince me every day that I’m not undesirable, unloveable or a burden. People like this are rare, but they are out there!

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

Picking a university can be a daunting task at the best of times – you need to try to chose one that matches your desired subject with predicted grades, and be in a location that you’ll be happy to live for the next three to four years. But for those who require a wheelchair trying to make the right choice can be a much greater challenge. Let’s run through some of the things you need to consider, as wheel as some universities that really stand out as being the most wheelchair, power chair and mobility scooter friendly.

City or Campus?

There are two types of universities in the UK, city and campus universities. Many of the best rated unis in the UK are town based – Cambridge, Oxford, and Durham for example, are town based. This can be a challenge as accommodation, lecture rooms and tutorials may all be in different locations and require navigating old city streets. However, some of the older universities are totally self-contained, and you may hardly need to leave the confines of the college walls during your stay. So be sure to check exactly where you will be housed and where your lectures and tutorials will be if you apply to a city university.

Campus universities are generally more wheelchair friendly because everything is on one site and most buildings are modern and accessible, and there will often be shops and other amenities on site too. This can make your day-to-day activities much easier, but if most of the socialising takes place in a nearby town, you may feel isolated if there are not good transport links in place, although a good mobility scooter or powerchair may be the solution.

Accommodation

As mentioned, few students look at the accommodation before going to uni, but this is probably the most important consideration. Many newer city universities have accommodation in mid-rise buildings (4 to 11 storeys) which although are usually modernised with lifts, are not always the most suitable option for wheelchair users.

Ideally, you should be able to get a room or apartment that has full wheelchair access with accessible bathrooms and kitchens. Kitchens should have low sinks and worktops, and ideally, there should be a wet room that you can roll your wheelchair into.

Disability Support Service

Contact the Disability support service at the earliest opportunity to discuss your needs and the facilities on offer. Pay them a visit on the open day too and have questions ready to ask – make sure they are geared up to support you fully.

Attend Open Days

Before applying to any university you should attend an open day. At the open day be sure to ask about accommodation too (many people forget this part) and take time to visit the halls of residences or area with student houses. Ask to see lecture rooms and tutorial rooms to check wheelchair access yourself.

Look Beyond the Campus

It is important to look beyond the university grounds as with both city and campus universities you will need to have easy transport to and from them. Some newer universities are often located in parts of town far from national railway and bus stations which can make it very difficult if you need to leave and arrive by public transport.

The terrain is also important. Cities such as Edinburgh and Exeter may provide modern university facilities, but many of the roads are very steep and wheelchair users will struggle to navigate all streets. It might be sensible to look up the most wheelchair friendly towns in the UK and then see which ones have universities offers courses you’re interested in. If you do head to a hilly university town, you might need to buy a new wheelchair that is lightweight and more suitable for the terrain.

Which Is Best?

There really is no “best” university for wheelchair users – every university works hard to accommodate all students equally, but one that does stand out is Loughborough University.
Loughborough is rated as one of the best campus universities (named Times University of the Year 2019) in the UK thanks to its top class facilities, access to green spaces and a good community feel in the student village. Loughborough’s Disability Office says that they support a range of long-term conditions as well as wheelchair users.

For a city campus university, here’s an interesting account of study at Canterbury Christ Church University. As you can see, some universities are extremely accommodating and will provide an excellent learning environment no matter what your abilities.

Are you, or have you recently attended, university as a wheelchair user? Please share your experiences below.


This guest post is provided by CareCo who provide mobility advice and support through their website and UK network of showrooms.

Interview | The Trailblazing Women of Muscular Dystrophy UK

5 Questions ~ 3 Influential Women

Emma Vogelmann (left) with Lauren West (right)

Lauren West, Trailblazers Manager

Michaela Hollywood, Co-Founder

Emma Vogelmann, Employability Officer

Michaela Hollywood (centre, front) campaigning with MDUK

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

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

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

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

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

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

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

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

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

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

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

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

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

Michaela Hollywood, who has SMA Type 2

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

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

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

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

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

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

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

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

Lauren West, who has SMA Type 2

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

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

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

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

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

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

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

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

Emma Vogelmann, who has SMA Type 2

5. What is your proudest achievement?

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

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

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

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

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


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

Interview | Singer-Songwriter with Muscular Dystrophy

Tabi, who has SMA Type 2, on her debut album, ‘I Wrote Life’

Album cover for ‘I Wrote Life’, by singer-songwriter Tabi

Tabitha ‘Tabi‘ Haly is a 35 year-old singer-songwriter from New York City. She has Spinal Muscular Atrophy Type 2, a progressive condition, causing muscle weakness and contractures.

Tabi cannot walk and therefore uses a powered wheelchair for mobility. She is now unable to use her hands to feed herself and uses voice dictation software. With 24/7 support from “home health aides” and physiotherapy to maintain as much strength as possible, Tabi leads a highly proactive lifestyle.

I recently had the pleasure of talking with Tabi about her music career and debut album entitled, ‘I Wrote Life’, (released January 2019).


Tabi, what and who are your biggest music influences and why?

I grew up listening to classic rock, pop and R&B, but I appreciate all genres. I enjoy catchy, soulful melodies, so that has heavily influenced the songs on my album. I am most inspired by artists who write their own songs because that is what I like to do. I love timeless songs and I feel motivated to write when I hear something that I wish I had written myself. I also admire artists who write about personal experiences.

I love Mariah Carey because she writes songs that touch upon insecurities and feeling like an outcast. She writes about her faith and she has clever lines and an impeccable vocabulary. I also love singer-songwriters such as Anna Nalick, Sara Bareilles, Christina Perri, and Jason Mraz. They write about love and heartbreak, which I can relate to.

I also admire a wide vocal range because it is fun to sing songs that are vocally challenging. That is when my R&B influences come into play. It’s really enjoyable to improvise and jam along. I like to challenge myself in general, so I definitely apply that to my music in terms of the lyrics, melody, and vocal styles.

Tabi performing live in her powered wheelchair

How would you describe your debut album?

I would describe my album as real and soulful. I allowed myself to be vulnerable to reveal my struggles and hopes regarding my disability, love, and life in general. The different subjects lend to the spectrum of dark and light tones.

My album is also fun, diverse, and uplifting! There are a lot of upbeat, empowering songs. People like to dance to them, and it was definitely a blast recording them.

The album is diverse because it crosses multiple genres including R&B, pop, blues, and reggae. It was difficult to select which songs to put on this debut album. Ultimately I wanted to make sure there was something in there for everybody. The order of the tracks matters to me because it tells a story and hopefully feels like you are being taken on a memorable and moving journey.

Tabi proudly holding her framed debut album

How autobiographical is the album, and why was it important to you to write the songs yourself?

This album is my baby! I know people use that term a lot in reference to personal projects, but I intentionally released it on my 35th birthday. At this age, many women, myself included, start to worry if they have not yet had a baby.

SMA presents challenges in every part of my life, but I am highly ambitious and set out to conquer my goals. I haven’t yet had a baby, so until then, this album is my baby. As an artist, it is my portfolio.

This album epitomises all that I have accomplished thus far; buying my own home, getting through college via financial aid and scholarships, having a successful full-time career that allows me to be financially independent, owning my own wheelchair accessible van, volunteering regularly, helping implement change for people with disabilities, writing and managing my music, managing my home health aides, being a motivational speaker, and being able to perform throughout New York City at cafés, bars, church, and schools.

As great as this is, it does cause alot of stress, sweat and tears! So I hope people enjoy the album and heed the message that faith and hard work have afforded me the life I have. This allows me to remain positive and to inspire myself and others.

Tabi smiling on stage, performing songs from her debut album entitled, ‘I Wrote Life’

Is important to you to inspire other disabled people who may have musical aspirations?

It is, especially since we are now at a time where there are so many groundbreaking opportunities. A few years ago, I saw many people with disabilities acting on Broadway, which took my breath away and really inspired me to continue doing what I’m doing. I would love to inspire, or better yet, collaborate with other musicians with disabilities.

During the bridge of my song keep rolling on I sing, “there’s so much left to change, more than we even think. More face in media, presence in arenas”.

Tabi, dressed head-to-toe in purple, holding a card displaying the hashtag #IWroteLife to promote her debut album

Have you faced any opposition, challenges and/or stigma on your journey to becoming a musician, due to your disability?

Surprisingly, the biggest challenge is sometimes getting onto the stage to perform! Most stages are not wheelchair accessible, so I have to be prepared for that. Another major challenge is having less live music venues to choose from because not all of them are wheelchair accessible.

Tabi performing live in NYC alongside her guitarist

How do you overcome these obstacles?

In the early days, I didn’t want that to be an issue or a dealbreaker when pitching to venues to book a show. So I would have my band members and friends lift me in my wheelchair on and off the stage. I have a powered wheelchair that weighs at least 300 pounds! So that was a lot to ask, and I am thankful for the support. This still happens sometimes, but I am now more confident about asking venues to consider investing in a ramp.

There are still the same challenges surrounding the inaccessibility of venues, both for the performers and attendees. I think this is just one of many accessibility issues that exists and for which we need to implement improvements.

You were the opening performer at the first ever Annual NYC Disability Pride Parade in 2015 to celebrate the ADA’s 25th anniversary. How did that make you feel?

That was such an amazing feeling! I had just started using my wheelchair again after having been stuck in bed for a few months due to ill health. So this experience was a huge comeback and it was an honor to be a part of this event. I have to reflect on this sometimes and remember how privileged I was to perform outside, in front of so many people, during the first parade specifically for people with disabilities.


I would like to thank the lovely Tabi for taking the time to answer my questions. Her brilliant debut album, ‘I Wrote Life’ is available to purchase and download NOW!

Follow Tabi on social media:

Twitter  Facebook  Instagram  YouTube