For Steven Jones, life is defined by a simple philosophy: control what you can, and don't worry about what you can't. It is a mindset that has served the 32-year-old well, taking him from a graduate to a deputy director in the Civil Service. But while he is used to high responsibilities in Westminster, Steven recently decided to experience a very different kind of rush, one that involved a harness, a wire and speeds of up to 100mph.
Life with the Renault Clio
Steven has been a Motability Scheme customer for 16 years, receiving his first vehicle at 16. He credits the Motability Scheme with launching his independence. Today, he drives a Renault Clio, having recently switched back to the model after a stint with a Ford Fiesta.
"I've only had that car a couple of months actually," explains Steven. "I went for the Clio because it's a good size. And it's also got quite good fuel efficiency."
As a wheelchair user with spinal muscular atrophy (SMA), Steven requires specific but minimal adaptations to get behind the wheel. "I have a transfer plate that was installed... I can quite easily transfer from my manual wheelchair over into the car and then I push the seats back and I'm able to pick the wheelchair up and put it on the seat next to me. I have an automatic car and I drive by having one foot on each pedal," he says.
"When I had the assessment done, when I was 16 or so, I wasn't able to lift my foot from the accelerator to the brake. So, it just works having one foot on each pedal and that seems to work really well for me."
The car is vital for his role in the Department for Health and Social Care, enabling him to commute to his underground parking space in central London, and also means he can enjoy downtime on the Isle of Wight. "It gives me quite a lot of freedom. I know if I need to go anywhere, if I need to meet any friends, if I need to go into the office, I can just get in the car and go," says Steven.
Driving change
When he isn't on the road, Steven is using his voice to make travel easier for others. He sits on the Independent Disability Advisory Group for Transport for London, a role that allows him to scrutinise policy to ensure it works for disabled people.
"It's really valuable bringing lived disability experience when you're developing policy," he says. "Changes can sort of make sense and look good on paper but, actually, when a disabled person uses that service for the first time... there might be different barriers there which weren't really thought about at the start."
Steven also volunteers as a befriender for Age UK, enjoying weekly calls with an elderly person to discuss film and politics.
The 100mph drop
This spring, Steven took things up a notch when he decided to face his biggest fear: Velocity, the world's fastest zip line, in North Wales. Speaking ahead of the challenge, Steven acknowledged that the prospect was a bit daunting. "But it is one of these things where I was, like, I really want to raise some money. I saw the zip line and I thought, you know what, I'm going to go for that.
"The challenge is about more than fundraising; it is about demonstrating that disabled people continue to push boundaries, redefine expectations and live full, ambitious lives," he says. "It matters for visibility, confidence and awareness."
David, his best friend, who has been by Steven's side since his teenage years, has helped drive the fundraising efforts and has joined him in the zip line. "I met him at school, probably when I was 14 or 15... and I was his best man at his wedding," says Steven.
They are raising money for SMA UK, a charity that has been a lifeline for Steven, who has noticed increased fatigue and changes in his condition in recent years. "SMA UK provides essential information, advice and support," says Steven. "I just think if we keep going with this awareness, if we keep going with looking at more drugs, looking at quality of life... I think that we can go a lot further."
Visit Steven’s fundraising page.
Photos: Simon Fernandez; Nick Mizen
