Featured

An Introduction

First and foremost, welcome to Life on the Slow Lane, a disability and lifetyle blog.

Here I share personal experiences, advice, reviews, interviews and more.

I also write for Disability Horizons, Muscular Dystrophy Trailblazers and Limitless Travel.

Please take a look around my blog and let me know what you think!


My Disability:

I have lived my entire life with a condition called Ullrich Congenital Muscular Dystrophy. It is rare, progressive and sadly widely unrecognised. There is currently no cure for UCMD.

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 | 7 Tips to Live a Confident Life Through Your Disability

Author: Jamie Costello

It’s fair to say that one of the biggest challenges of being born with a disability is that it can be difficult to be who you are without thinking of the physical condition that you’ve been born with. It’s not hard to understand why a disability can knock the confidence from you. Many individuals can find it difficult to adjust to life that requires a major change to their day to day routines and tasks. This can make it more difficult for an individual with a disability to feel confident in themselves. However, some useful insights may be useful in picking up your confidence and helping you for the future.

1. Don’t live up to the expectations others have of you

When people look at those with a disability or injury, they tend to have pretty low expectations of you because of how you look or the disadvantage that you may have. But their judgements are wrong about you. You may have a lot to juggle on your plate such as school or work and you’ll need to learn new skills that can help you to adapt with your disability. But in learning these it will definitely help you for the future. Essentially, don’t let your disability bring you down and don’t be afraid to try new things.

2. Don’t compare yourself to something else

Everybody has aspirations and you shouldn’t let any condition you have prevent you from reaching them. There’s nothing wrong with being ambitious but also be realistic about your future goals. You know what you’re capable of and you’re sure able to do it. Don’t let others influence this.

3. Doctors don’t necessarily know everything

Medical professionals do a fantastic job and their skills are to be admired in what they do, but there can be occasions where they don’t necessarily have all the answers that you’re looking for. You know yourself pretty well and there will be others around you who know you pretty well too. Don’t let the advice of doctors get you down and in some cases, consider doing what you think is right as it can normally be the right decision.

4. Be open to bringing in new people

Due to your circumstances, it’s likely that you’ll come across and be introduced to new people in wonderful ways. It may form some of your greatest friendships but at the same time, you may come across some people who will find it difficult to accept you. Don’t let this get you down and force yourself to get them to like you. Stick with the people who feel comfortable with you and you feel comfortable with.

5. Others may be afraid to be honest with you

People around you may have a feeling of sensitivity around you and the fear that they may hurt your feelings. A lot of positive comments is great to hear and can be great for your self-esteem, but at the same time it might not be a great help. You’d also want people around you who speak honestly with you and they’re more likely being that way to benefit you. The majority of the time, they’ll be the one that you want to go back to for further advice and perspective.

6. Don’t be too critical of yourself

Consider the situation that you’re in and how there are very few people who are in the same boat. The fact you’re continuing to enjoy life even though you have a disability already shows good character. Be confident in the fact that you’re knowledgeable on elements of life that others have no clue about. The qualities that you have as a person are the majority of what’s needed to get by in life.

7. Continue to exercise and keep hydrated

Do whatever it takes to remain active. Consider taking up sports that are adaptive to those with disabilities, and save yourself from being a couch potato. It can help to mentally improve your wellbeing.

Self-esteem and confidence is a large issue in today’s society, particularly when it comes to the impact it can have to your mental health too. When we think of other topics surrounding these issues, a big one being individuals resorting to cosmetic surgery to improve their appearance, a lot of these options are extremely unnecessary because regardless of the condition that you have or how you look, embracing who you are is always the best way to move forward and gain the confidence you deserve.

Guest Post | Employing Older Workers

Are Employers Doing Enough to Help with the Wellbeing of Older Workers?

The business world is going through a radical change to workforces right now. According to the Office of National Statistics (ONS), one in four workers in the UK is now aged over 50.

Research commissioned by the Department for Work and Pensions (DWP) found that from 2011 to 2014, the proportion of workers aged 50 and older rose from 21% to 24%. The same ONS survey estimated that, by 2030, the number of people in the UK aged 65 and older will have increased by 50%, while those aged 20 to 30 would see a 4% decline.

This figure may vary depending on a variety of circumstances including the location, industry, policies and more. One thing’s for sure though; these changes will have far-reaching consequences across society, including the workplace.

With this in mind, it’s even more important to acknowledge and invest in supporting the changing workforce. Organisations are now in competition for the best and most experienced staff.

In this article, we explore what this means for businesses. We identify areas where employers can further support their older workers and offer some tips for ensuring their wellbeing.

Older Workers and Wellbeing

Anyone that’s been in employment in the last five to ten years would no doubt have noticed the increased focus on employee wellbeing. It’s the trending buzzword relating to the health and safety of not only the physical but also the mental health of workers.

To keep your workforce happy (and by extension increase productivity), you should consider investing in both physical and mental support.

To achieve this for your older workers, you need to first consider what they need and want in the workplace. Research conducted by CIPD at the Centre for Ageing Better showed that just like younger workers, they’d also like a job that is meaningful, stimulating and sociable.

At the moment, older workers feel less appreciated compared to their younger counterparts. They’d like a job that’s not only flexible but also offers opportunities such as mentoring, training and career progression.

Benefits of Age Diversity

A study by Ageing Better shows employers report greater levels of loyalty, reliability and commitment from their older workers compared with younger colleagues. Their experience in life and in their sector places them in an ideal position to manage themselves and other members of staff.

According to a survey by CIPD, the number one benefit of age diversity in the workplace is knowledge-sharing. They found that 56% of HR decision-makers believe that older workers transfer vital knowledge and skills.

Having a diverse workforce, not only in age but also race, religion and (dis)ability can also help to solve complex work problems. By bringing a mix of ideas, skills, strengths, experiences and backgrounds, you’re ensuring that strengths and weaknesses are balanced.

Finally, because of the estimated increase of over 50 year-olds in the general population in the UK, age diversity in the workplace can help to match the profile of your customers which will, in turn, improve the product or services you offer.

4 Tips for Supporting Older Workers

Be open to flexibility: This is important to workers of all ages. It helps them to create a balance between their work and social life. Specifically, for older workers, it also provides a transition period to retirement. Remember to inform your staff of their right to make flexible working requests.

Mentoring: By allowing your older workers to mentor younger employers, they’re able to pass on their experience, work habits and attitudes towards work.

Training: Some employers are concerned about this investment because they worry that they’re investing in someone who may soon retire. However, it’s worth noting, training these workers means as well as keeping their skills sharp, they’ll be more employable.

Employee Assistance Programmes: As well as retirement benefits, you should also be supporting them while they’re still at your company. Offering employee assistance programmes gives workers access to support that’ll help them deal with personal problems that might impact their work performance or their health and wellbeing.

On top of all this, you should also be conducting regular one-to-one meetings to review their performance, offer feedback and keep on top of any issues.


My thanks to David Price from Health Assured for providing this guest post.

Mobility Product Review: Bellavita Bath Lift

I was recently contacted by the team at ManageAtHome, an online Medequip retailer providing mobility aids and equipment.

They kindly sent me the Bellavita Recliner Bath Lift to try out and review.

The Bellavita Recliner Bath Lift ~ A side view

About Me

I’m a 30 year-old woman with Ullrich congenital muscular dystrophy. Consequently, I am a non-ambulatory wheelchair-user. I can’t use a regular bath or shower, and therefore need to make adaptations and use appropriate mobility equipment.

Bath vs Shower

Generally speaking, most disabled people, particularly wheelchair-users, prefer a level-access shower room to a bath. Personally, I’ve always loved to sit and soak in the bath. I find it relaxing and therapeutic as it helps to ease any tension in my muscles. So, for the past 20 years, I have used various bath lifts, including the Aquatec Orca Bath Lift.

Bellavita Recliner Bath Lift

The Bellavita Recliner Bath Lift in-situ

The Bellavita is quick and easy to assemble. Compared to other bath lifts, it is much lighter in weight (9.3 kg) and therefore easier to remove from the bath for cleaning and travel. This does not make it any less sturdy than other similar models, and can support users of up to 140 kg/22 stone.

I was impressed by the sleek, compact design which is both aesthetically pleasing and practical. It is certainly less bulky than other reclining bath lifts I have tried, thereby freeing up more space in the bath to stretch out.

The side guards are detachable for user preference. This does not affect the function or stability of the bath lift.

Bellavita Bath Lift

The overall length of the Bellavita is only 57 cm – much shorter than most other bath lifts. For me, this is definitely a big advantage and something I look for. The fact that it is so comparatively small, lightweight, easy to remove and install means that it can be folded up and stored away if necessary and transported in smaller vehicles.

The entire chair, including the easy-to-use hand controller is fully waterproof. The buttons are large, brightly coloured, and easy to press, even for those with very little strength.

The easy-to-use lightweight hand controller with brightly coloured press buttons

The Bellavita includes a non-slip, comfortable seat cover in either blue (as seen in my photos) or white, which is wipe clean and effortlessly removed.

The Bellavita partly lowered into the bath

It is recommended to charge the Bellavita Bath Lift after every use, though I find once a week is enough.

Back view of the Bellavita

As the name suggests, the Bellavita Recliner Bath Lift reclines! Though some other bath lifts claim to do this, the Bellavita reclines to 50°. As a result, you feel like you’re able to make full use of the bath rather than being restricted.

One of the biggest advantages of this particular bath lift is that it is the lowest available! The seat, when fully lowered, is only 6cm from the base of the bath, meaning that you feel fully submerged and ultimately use less water to fill the bath.

I would definitely recommend the Bellavita Recliner Bath Lift to anyone with impaired mobility who still wants to enjoy the luxury of a bath.

The team at ManageAtHome have been fantastic ~ extremely professional, supportive, friendly and efficient. Check out their website to view the full range of products available!

Follow ManageAtHome on Twitter


Disclaimer:

ManageAtHome provided the Bellavita Recliner Bath Lift in exchange for a fair and honest review. All opinions are my own.

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.

Album Review | Tabi ‘I Wrote Life’

I recently had the pleasure of interviewing singer-songwriter and disability activist Tabitha “Tabi” Haly, who, like me, lives with a form of muscular dystrophy.
Tabi performing songs from her debut album
You can read my interview with Tabi here!

Tabi, who has spinal muscular atrophy Type 2 and uses a powered wheelchair, is a 35 year-old musician from New York City. She began singing to exercise her weakened lungs and writes about the physical and social obstacles she faces.

She is already an established performer, having opened the first ever Annual NYC Disability Pride Parade in 2015, followed a year later by her own show, ‘A Concert on Life, Love and Being Different’. In 2017, this show sold out at the Rockwood Music Hall. Tabi has also performed at the Prudential Center and Brooklyn Dodgers stadium.

Her self-penned debut album entitled, ‘I Wrote Life’ covers numerous musical genres and is both uplifting and poignant. With soulful, catchy melodies, this impressive first outing demonstrates artistic skill and authenticity.

The album was produced at Dubway studios by Russell Castiglione, who previously recorded Trey Songz and Norah Jones.

“Producing this album was like helping her tell her story, her struggles, and her achievements to the world and that was very humbling.” ~ Russell Castiglione

It was master engineered by Dave McNair, who has worked on albums by Maroon 5, Cyndi Lauper and the legendary David Bowie !

“Tabi puts her life into her songs. It’s refreshing to hear an artist being so real in their work.” ~ Dave McNair

Track listing for the album ‘I Wrote Life’ by Tabi

Tabi is a talented lyricist and storyteller with a distinctive tone and impressive vocal range. The album is a well-crafted, subtle infusion of R&B, rock, folk, jazz, blues, country, and dance, with a notable 90s pop vibe.

Each track is a candid representation of the different elements of her life. Though revealingly autobiographical, it is also highly relatable, owing to universal themes such as love and loss. The songs ‘I Won’t Hide‘ and ‘I Am Able‘ reveal deep insights about falling in love and healing after a broken heart.

The self-penned album is optimistic and motivational, with songs such as ‘Keep Rolling On‘ inspiring strength and hope in the face of adversity.

The title track ‘I Wrote Life‘ recounts a specific childhood memory, which summarises Tabi’s attitude to life…

“I remember as kids the teacher would say, write on the board a word today, so then everyone wrote their favourite thing, and there I was just imagining, how great it would be to live long and happily”

‘I Wrote Life’ is available NOW at Amazon and Spotify

Tabi with a framed album disc

www.tabinyc.com

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:

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Guest Post | NHS Funding

Resource Allocation: A classic medical ethics topic that often rears its head in the inevitable reality of working in a cash-strapped public healthcare system.

Should the NHS fund this new expensive treatment for a rare disease?

Should the government pay for a new experimental cancer treatments?

Should X procedure be on the NHS, or Y?

The list is endless.

This blog covers a few basic ideas and concepts for you to broaden your understanding of why things are done as they are, enhance your opinion and help you think of the bigger picture.

Utilitarianism

One way of analysing resource allocation is using a utilitarian approach. Utilitarianism describes the moral theory that the most moral action is that which maximises the happiness (or in this instance healthiness) of a population. This seems quite a nice logical and fair systematic approach, but has one major drawback.

How do you quantify the benefits gained from a specific treatment?

Fortunately, Alan Williams, a health economist calculated a measure for doing this – the Quality Adjusted Life Year. This system described not only the length of life a specific treatment can give a patient, but also factors in the subjective quality of that life.

Interestingly, some of the ‘best’ treatments by this system including cataract surgery and hip replacements, owing the massive improvement in life these can bring (even though they are rarely viewed as life extending). However, despite quantifying the ‘best value’ treatments, this system still has its drawbacks.

Firstly, many argue that this system ignores both the old, and the chronically ill. The old will have fewer ‘life years’ per treatment and the chronically ill will have a lower ‘quality of life’ per treatment by this system, and will thus lose priority in this system.

This a great concept to think about as many new drugs are for specific diseases, which are often rare and chronic, or those which affect the elderly. Secondly, ‘quality of life’ is a highly subjective term, and, although this system goes someway to quantify it, the end result is still a subjective rating score.

Egalitarianism

Another way of analysing these topics are through an egalitarian approach. This theory states that resources should be distributed equality unless an unequal distribution would work to everyone’s advantage. However, in reality, there is not unlimited funding and therefore equality of distribution means that expensive treatments (the new drugs often featuring questions) could not justifiably be funded.

This approach does promote a decent minimum standard of care (good for everyone) and some argue that more expensive treatments can be funded elsewhere. For example, charities and private companies could find a place in an egalitarian healthcare system to fund more niche treatments.

Libertarianism

Another viewpoint worth nothing (though one which many, especially in the UK, would be against) is that of libertarianism. This system states that healthcare should follow individual liberties and free market principles – i.e to be privatised. This is an interesting viewpoint to discuss, but, given the many drawback of private healthcare and the NHS in the UK, it’s not one we in the UK really consider.

So, there we have it, a few basic approaches to the classic question of ‘should we fund this expensive new drug’.


This guest blog post is provided courtesy of writer Adi Sen, from the website UniAdmissions.

Disclaimer: The views and opinions expressed in this article are those of the author (UniAdmissions), and do not necessarily reflect the official policy or position of myself or any other organisation.

Theatre Review | Birmingham Hippodrome

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.

Tickets and Les Miserables theatre programme.

Accessibility at Birmingham Hippodrome

Booking & Parking

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.

The main front entrance of the Birmingham Hippodrome – fully accessible to all.

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.

The main entrance from inside the Birmingham Hippodrome.
Inside the Hipppdrome – multiple levels accessed via stairs and two glass lifts/elevators

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.

Seating plan showing the accessible Lounge area at the rear of the Stalls (lower level).
Our view of the stage from the Lounge seating area.

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.

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

Click here for a full accessibility guide, provided by AccessAble

Les Miserables ~ The Show ☆☆☆☆☆

The current touring cast of Les Miserables

I had already seen the 2012 film starring Hugh Jackman and Anne Hathaway, and was therefore familiar with the songs and storyline. But honestly, there is no comparison!

Now, I’m generally a fan of Russell Crowe, but as Javert he was total crap. The guy who played the same role in the theatre production puts old Russ’ to shame! Man, what a voice.

The entire cast was brilliant, with no weak links. How they maintain such a high quality performance, night after night, demonstrates the talent and professionalism of each individual.

Warning: Spoilers..!

All credit too, to the costumers and production design. Particularly impressive were the ensemble scenes at the barricades, and the moment Javert meets his watery end.

For me the highlight was the solo performance of Bring him home by protagonist Jean Valjean (played by Hugh Jackman in the film version). NOTE PERFECT!

If musical theatre is your thing, go and check out Les Miserables!

Les Miserables balloons at the Birmingham Hippodrome