Living with SMA – Trailblazer of the Year Lauren West

Budding writer, 24-year-old Lauren West, who has spinal muscular atrophy Type 2 (SMA), is one of Muscular Dystrophy UK’s original Trailblazers, a network of more than 600 young disabled campaigners. She has championed the network’s values since it started in 2008, working to break down barriers facing young disabled people going into higher education, and employment.

Lauren has just won the Trailblazer of the Year award at Muscular Dystrophy UK’s 2015 President’s Awards. She talks about her achievements with Trailblazers, some of the challenges she faces, and the changes that need to be made so disability is not a barrier for anyone. 

My day job is working as an advocate – I help ensure people with support needs get their voice heard. It’s a very rewarding job and means that I get to work with a huge variety of people, each with their own unique story.

Having a physical disability brings about lots of day-to-day challenges, things that I campaign with Trailblazers to change. Accessibility is a massive issue – the infrastructure around London can totally empower, but also totally hinder, a wheelchair user depending on where you are. I think naturally I’m quite a spontaneous person, but being a wheelchair user puts a stop on that. Although one Thursday I did decide I wanted to spend the weekend in France and so I did (and successfully too)!

I think one of the main challenges that, not only I, but every disabled person faces, is stigma. I am just a typical 20-something and want to be treated that way. I definitely don’t need people to make comments like ‘good on you’ just for leaving the house every morning!

Through school and university, part-time jobs weren’t really an option to me. I am probably not well designed to be a waitress or shop assistant. That lack of work experience can make permanent employment a challenge.

I was very lucky that I managed to secure a job whilst still in doing my Masters. I was also lucky that in this job, lived experience of disability was seen as a bonus.

There is a lot that needs to be done to address some of the issues that disabled people face when they are looking for employment. I think work experience placements are key. In a lot of jobs, unfortunately, you may not be seen as the ideal choice. So it is essential to get as many skills under your belt as possible.

Also, there needs to be better promotion of things like ‘Access to Work’ (the best-kept secret). Often, employers will see disabled people as expensive if we need workplace adaptations, etc. But if they knew there was help out there, this may not be seen as such an issue.

Universities should also be targeted. Having a dedicated disability careers officer may help, especially if they know about specialised schemes like EmployAbility. They could also help with writing CVs and interview skills. Being disabled means we have a lot of great skills already, especially with things like problem solving and creative thinking. We need to find ways to promote these skills with job applications and interviews.

Muscular Dystrophy UK has supported me in a variety of ways. Through Trailblazers, I have completed work experience placements, which was a huge help in securing a permanent job when I finished university. It’s allowed me to meet some great, like-minded people who I wouldn’t have had the pleasure to meet otherwise.

My biggest achievement campaigning as a Trailblazer has to be giving the opening speech at the APPG for Higher Education. I got really involved with the University Challenge campaign, looking at accessibility and support for disabled people at 100 universities across the country, and it was amazing to be able to give my own experience of university in front of lots of high-profile professionals!  I am also pretty proud that two of my blogs got published in The Huffington Post.

It was a real honour to win the Trailblazer of the Year award at Muscular Dystrophy UK’s President Awards – it was very unexpected. I love being involved in something where you feel you can actually make a difference.”


Find out more about Muscular Dystrophy UK’s Trailblazers.



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