In Visibility Today: Disability Blogger and Activist Shona Louise

“We see it time and time again. It’s disabled people helping disabled people”.

Shona says this midway through our interview. She means it in response to the amount of support she received from the disability community when she was forced to crowdfund for her powerchair last year, but her statement could also be true of the many people she herself has helped, over many years writing and advocating for members of this same community.

Shona, a twenty-year-old disability blogger and activist from the UK, was born with the connective tissue disorder Marfan Syndrome. The symptoms of this she describes as “an endless list”, but the biggest thing for her is chronic pain, as well as a cyst in her lower spine that has necessitated the use of a powerchair.

As an ambassador for the Hypermobility Syndrome Association, Shona says she’s “flying the flag” for Marfan Syndrome, as within hypermobility conditions, Ehler-Danlos, a similar but not identical syndrome, gets more attention, which is why she’s so passionate about raising awareness of her own experiences.

“One side of it is just general awareness because it is a life-threatening condition, so the more people who know about it the more people you can save, but even within the medical community, I still have people tell me that Marfan doesn’t cause chronic pain. So, educating people within the medical community and the general public is an important part of [the work I do].”

NHS Wheelchair Services

Shona in her old powerchair

As a member of the general public, it would be easy to assume that someone like Shona, with a genetic condition and a cyst in her spine, would automatically be entitled to a specialist powerchair on the NHS. However, for Shona and many people like her, this is sadly not the case.

“The first time I needed a powerchair, I was using a manual wheelchair that was pushed by my family, and I had to crowdfund for that as well. There’s this rule within some NHS wheelchair services where, if you can walk inside your house, despite how painfully, despite what mobility aids you use, then they don’t tend to give you help with powered mobility.
“So, you’ll likely get a manual chair, and that was offered to me, but it was of no help to me at all, so I had to fundraise for my first powerchair.”

Unfortunately, like many people with an ongoing condition, Shona soon found that a decline in her health, coupled with a lack of knowledge about what would suit her body, meant that within 18 months her powerchair was causing her extreme pain.

The issue with the NHS system, she says, is that there’s still a sense that a “one-size-fits-all” approach is the best way to support disabled people who need mobility aids.

In Shona’s case, the only thing that relieved her pain was lying down, which meant that her old powerchair limited her in how long she could spend out of the house, and how far away from home she could travel.

But the powerchair she needed, with a tilt-in-space and recline function which allows her to relieve her pain, as well as a rise feature so she can raise her sitting level by around ten-inches, simply isn’t offered by the NHS.

All of these factors meant that last year, she was forced to crowdfund £10,000 to access a powerchair that would allow her to leave her house for extended periods of time.

“I think wheelchair services need to have more options that better fit people for longer, because, like I’ve proven, having a powerchair that doesn’t fit your needs, within a year or two you’re going to need a new one, which is going to cost far more than [the NHS] sees as saving options.
“But I also think we need to look at disability better. Whilst it’s not intentional, within the NHS there is still this idea that if you’re not paralysed, if you don’t have a spinal cord injury, then you don’t really need a wheelchair, or you are more able to go without one than others.
“What [NHS wheelchair services] offer is very limited, and they have their few companies they work with, and then it’s a one-size-fits all ideology from their side.
“They need to be taking a step back and adjusting things to fit this new wave of people who have multi-system conditions, who are deteriorating, and aren’t getting the right support because they don’t fit all the nice little boxes.”

Disabled people helping disabled people

Shona in her new powerchair

Since she’s been able to access her new powerchair, Shona has already done a number of things she wasn’t able to before. As part of her work drawing attention to disability issues, she was featured on Channel 4 discussing the ongoing environmental campaign against plastic packaging, and was even able to travel to London to appear on Channel 5 to discuss the same issue.

But none of this would have been possible without her powerchair, which was funded predominantly by other members of the disability community.

“I couldn’t fault the community [for their support]. We see it happen time and time again — it’s disabled people helping disabled people — and there was a big chunk of money raised through [a disability fundraiser in the US], which was nearly £1000.
“It took off a huge chunk, and a lot of the donations that were coming in apart from that were from fellow disabled people as well.”

For Shona, that the support has come primarily from other disabled people is welcome, but not surprising, as outside of this community, many people are unaware of the challenges we still face. Having to crowdfund for mobility aids is but a small part of the ongoing ableism still perpetuated by our society, which is why awareness raising and disability advocacy by people like Shona is so vital.

“[I’d like to get rid of] the idea people have that disability is one thing. [That] it looks one way, it acts one way, it has one manifestation, and while we are seeing more done about mental health, I think we’re still very narrow in what we think of as disability.
“Many wheelchair users and powerchair users do have spinal cord injuries, but many of us don’t, and when people have this preconception that that’s what disability looks like, then you get people like me, who are scared to move their legs when they leave the house because people think ‘well, if you move your legs then you’re faking’.
“[We need to get rid of] the idea that disability looks one way, when there are a million different ways [it can look].”

With people like Shona working to change these misconceptions, we can have hope that in the future, our societies and social systems will one day better reflect the reality of living with disability. For now, that change can’t come soon enough.

*You can read more of Shona’s work at www.shonalouise.com and follow her on Twitter at @shonalouiseblog

**Interview taken from the February episode of the In Visibility Today podcast @VisibilityToday