Watching Sam Bosworth perform, you wouldn’t think he was disabled. If you’ve ever spent an evening on Osborne Road, you might have seen him playing in one bar or another. He’s a talented musician with tracks on Spotify and music is his passion. However, in the last few years his ability to pursue this passion has become increasingly difficult.

Sam has Charcot-Marie-Tooth disease otherwise known as CMT, a degenerative neurological disorder that over time is slowly robbing him of the use of his body. Sam’s condition has progressed to the point where he needs a wheelchair and spends much of his time advocating disability awareness online.

We’ve seen an a surge in recent years for the advocacy of different groups. But disabled people are often left out of that conversation. Sam is tying to change this and his posts on social media focus on addressing preconceptions and debating the manifestation of “ableism” — discrimination in favour of able-bodied people.

Not a litmus test

Although we might not be familiar with the term “inspiration porn”, we’ve seen the videos, the clips that appear on our social media feeds, accompanied by emotive music, text highlighting the struggle of an individual, laid over footage of a disabled person doing something we might be surprised by. We click “Like”, we share and we get a warm fuzzy feeling inside. 

“You’ll see a disabled person doing something impressive, whether it’s music, whether it’s dance, whether they’ve just taken the first steps after rehab and go… ahh, amazing,” says Sam. 

He agrees that these videos are often made with good intentions, but argues that they can be construed as patronising or belittling to members of the disabled community. “Disabled people are seen as a litmus test for what your life could be, if it was worse,” he says

“It’s difficult because of the preconceived notions we have — you think a disabled person doing anything remotely impressive is incredible.

Changed perspectives

“There are people with my disability who can run marathons and there are people with my disability who have had their feet amputated because they’ve gotten to the point where it’s too painful. And then there are people like me, somewhere in the middle.”

There is a disparity in understanding and opinion, even within the disabled community. Sam says that often this can take the form of “internalised-ableism” — but even the idea of what constitutes internalised ableism is up for debate.

“Having the internalised ableism discussion is really difficult, because a lot of disabled people are already their own advocates,” says Sam.

Some people within the disabled community recently called out the series Netflix’s Queer Eye for featuring a black disabled man who runs a charity called Disabled, But Not Really. When so many people claim an identity through disability, this was perceived as a form of internalised ableism.

As the conversation continued, more members of the black disabled community become vocal and highlighted the fact that this was actually a reflection of the black disabled experience. Disability is often hidden within this community and this was a way of normalising it. Sam admits this changed his perspective.  “People don’t want to hear they’re being ableist, especially against the people they are trying to speak up for,” he says. “There is just as much learning to be done within the community than out of it.”

More than 11 million people in the UK live with a disability and Charcot-Marie-Tooth disease is one of the most common inherited neurological disorders. Join the conversation with Sam on Instagram and Twitter.