Photo and retouching by James Alexander Lyon courtesy of Model of Diversity

Photo and retouching by James Alexander Lyon courtesy of Model of Diversity

Mik Scarlet is like Billy Idol on wheels.

The leather-clad British journalist, actor, activist and TV presenter (“host” in the United States) with multi-colored spiky hair is also a synth-pop rocker, so the comparison — which he uses and often gets in public — certainly fits. But the punk aesthetic he confronts the world with also signals to his nondisabled countrymen that whoever they think a wheelchair user is supposed to be — he is not it.

Photo and retouching by James Alexander Lyon courtesy of Model of Diversity

Photo and retouching by James Alexander Lyon courtesy of Model of Diversity

Look deeper, and his name will tell you everything you need to know. Chosen because there were too many Miks with the same name in Equity (Britain’s actor’s union), “Scarlet” is a tribute to Scarlet’s childhood hero, Captain Scarlet, from the 1967 kids television series Captain Scarlet and the Mysterons. Like its predecessors — Thunderbirds and Fireball XL5 — its characters were marionettes, and the show used a technique called supermarionation to animate the puppets’ movements and facial features. Captain Scarlet follows a space captain blessed with an alien healing factor called retro-metabolism, which renders him able to survive anything, just like Scarlet himself.

Six weeks after his 1965 birth in Luton, Bedfordshire, England, Scarlet was diagnosed with a malignant tumor called an adrenal neuroblastoma. It was only after an experimental treatment with a new American drug called vincristine sulphate that he survived, albeit with a paralyzed right leg. At age 15, his mother sent him to school despite his complaints of not being able to walk, thinking he only wanted to avoid his German language final exam. He collapsed in front of his geography teacher. Turns out, the same experimental drug that allowed him to survive 15 years earlier had deformed a vertebra, which on that day collapsed and crushed the nerves in his legs, making him a full-time wheelchair user.

Fast forward nearly 20 years: In 1999, as he approached the end of a prolific decade as a TV presenter and journalist, Scarlet was driving around Marble Arch in London when an articulated truck cut the corner and crushed his little red sportscar with him in it. At first, nothing seemed the matter — of course that’s difficult to discern when you’re already paralyzed — and Scarlet continued to work. But pain mounted, and even though no doctors could figure out why for a year, they soon discovered the car accident had cracked more vertebrae. But once again, just like Captain Scarlet, he made his comeback. Instead of causing him to withdraw from the world, the experiences did the exact opposite.

“My parents taught me from the first day I could remember that I wasn’t less than anyone else. If anything, I was probably better because I used to get told regularly, ‘You survived something that would kill most people,’ and I still have that little flame of arrogance that burns inside me,” he says.

The Rise of a Star

Back to 1980: Following Scarlet’s onset of paralysis at 15, his mounting experience as a wheelchair user helped him realize he had nothing to lose, and he began to think that everything he ever wanted to do was within reach. Not pursuing it was not an option anymore.

Scarlet is shown hard at work dreaming up a new project. That’s his wife, Diane Wallace, on his screens.

Scarlet is shown hard at work dreaming up a new project. That’s his wife, Diane Wallace, on his screens.

“Doctors always think that if you could get a cure you’d have it, and when I first became a wheelchair user, yeah, I sort of got a bit lost and I thought my future was going to be rather grim. But actually, it marked the start of my life where all the things I wanted to do as a kid sort of happened,” he says.

First on the list was “being in a band,” so when Scarlet was too ill to go anywhere — feeling lost and that his future was grim — he taught himself to play the keyboard, program a drum machine and started writing his own songs. “I became an electronic musician. It was like a Depeche Mode sort of thing,” he says.

Mik ScarletWhen he was well enough, he joined London’s New Romantic club scene and started performing gigs with a band he put together with his brother and friends. They were called Freak UK, and at the height of their popularity they opened for Scarlet’s teenage idol, Gary Numan, on his Emotion European Club Tour in 1991. But how did a punk in a wheelchair front a band and open a European Tour? Was the UK’s record industry really that progressive?

“There was always a struggle to get people to take Mik seriously,” says Scarlet’s wife, Diane Wallace. “There was a lot of resistance in the music industry in those days. People would always say, ‘Well he won’t be able go on tour,’ so he just went on tour. He was the one who called Gary Numan and asked to be his support act. Every time someone told Mik he couldn’t do something, he would just go and do it.” Wallace was also the lead singer in his band after Freak UK, a dance music act called Eroticis.

But while the music industry didn’t exactly come along, the fans certainly did. “Mik had a really strong following for all the bands that he was in. Freak UK had a really hard core group of people that even today post things online and keep track of any new music coming out,” says Wallace.

Visiting BBC to appear on Ouch! left Scarlet saddened that there aren’t as many disabled performers on television as there once were in Britain.

Visiting BBC to appear on Ouch! left Scarlet saddened that there aren’t as many disabled performers on television as there once were in Britain.

The fans weren’t the only ones who saw something there. Around the time of The Emotion Tour, a TV producer spotted Scarlet and offered him a chance to be on television. “I said yes, obviously,” says Scarlet.

At the time, in the late ’80s and into the ’90s, there were British actors with disabilities on television and, along with himself, quite a few disabled presenters, but they didn’t always cover the topic of disability. In 1989, Scarlet hosted a show called Help Roadshow that focused on environmental issues. Then he presented youth programs like Survivor’s Guide and Sex Talk that were more concerned with sex and the latest bands than the environment. They put him on the map as the first disabled presenter ever on British mainstream national television.

Scarlet’s big break came in 1990 when he shifted gears again, hosting a truly unique kids’ show called Beat That, in which both disabled and nondisabled kids worked together to complete a challenge under a time limit such as, “Put on a fashion show using recycled materials.” The show was a hit, garnering 2 million viewers per week and worldwide syndication, earning Scarlet an Emmy and a BAFTA nomination (Britain’s Oscars).

“Mik has a very lively way with him in terms of his relationship with the camera, and he can convert that into a kind of rapport between him and the viewer,” says Ian Macrae, a blind broadcaster and journalist. “As a presenter, he’s not straight and down-the-line, but more sparky, more energetic and more interesting to watch. What he does more than many is challenge people’s conventional view of what a disabled presenter should be and how a disabled presenter should look in a more direct way.”

Macrae went on to work with Scarlet as series editor on his next gig, as a correspondent on From the Edge, a news magazine show that covered all kinds of disability issues and aired nationally on BBC2 on primetime at 7:30 p.m. from 1990 until 2000. The show drew in 1.5 million viewers a week and covered everything from disabled parking to personal support with perspectives on politics, the arts, finance and lifestyle, all with a disability angle, and it did them straight — no inspiration porn. From the Edge was part of the BBC’s charter initiative to represent every population that lives in Britain, including those with disabilities. The show was produced by the BBC’s now defunct Disability Programmes Unit.

“In the early ’90s, there were certain people around the BBC who got the idea that disability was the next big battleground in the way that gender, race and sexuality had been,” says Macrae. “They got the idea that there was this other group of people called disabled people and within that group there were activists that were beginning to make a lot of noise.”

The Disability Programmes Unit was part of a national push for more diversity in the media, and one could argue that shows like From the Edge and the effort of the DPU played a key role in the passage of Britain’s Disability Discrimination Act in 1995 and subsequent legislation to improve it in 1997.

“By the time we got to 2000, there was a feeling among senior management at the BBC that it had all happened now — the war had been won. In fact, what we knew was it was really only just beginning,” says Macrae.

Rolling Backward

Macrae was right. In the early 2000s, the BBC stopped commissioning disability issues pieces, and the disability activist community began to fragment, thanks to social media. The British government entered a period of austerity that began with the 2008 recession and has continued to this day — with many institutional disability supports such as social security, employment support and personal assistance being cut to bare bones.

Much has changed since many of the progressive policies Scarlet and others championed have been clawed back. The positive attitudes toward people with disabilities have been regressing into the past. “We’ve made a lot of progress in certain areas, but overall, we’ve gone backwards, I’m afraid,” says Sue Bott, deputy chief executive of Disability Rights UK.

Damon Rose, editor of BBC’s Ouch! — a disability podcast, blog and online talk show — says that in place of the dedicated disability programming of the Disability Programmes Unit, the BBC is now trying to hire more people with disabilities to work behind the scenes and in front of the camera on all of their shows.

“Broadcasters would justify that by saying we need to have disabled people in the mainstream, which is true, but really you need both [mainstream plus disability culture] because disabled people are not yet truly equal citizens, so there’s still a need for programming to explore disability issues,” says Bott.

The consequence, according to Bott, is less visibility and a more negative attitude towards disabled people. She says there’s been a noticeable shift in attitude over the last few years, and it has been led by the government as a way of justifying cuts to Social Security.

From the early 2000s on, while this shift in attitudes toward disability was happening, and following the conclusion of From the Edge, Mik Scarlet was still in the process of recovering from his 1999 car accident. But while Wallace was nursing him back to health, he still found the energy to rail against the state of things from his bed with his various columns across the internet, particularly on Huffington Post UK.

Mik Scarlet.
One of his most vulnerable and passionate columns came in March 2017, when he began to chronicle his switch between benefit programs. Scarlet wrote about how he was given a lower benefit on the new program because an assessor misunderstood a basic medical term, and how they’d lost the medical evidence for his appeal and then suddenly found it again when he showed up in person. When he finally won his appeal, the whole process had taken six months.

“Only after I found the appeal had gone in my favor did I realize the amount of stress the whole process took, and mine was fairly straightforward,” he wrote. “For too many disabled people out there [the new benefit program] has been a disaster. It is an overly complex system with under-skilled assessors and an appeals system that adds to the already existing complexity and waiting times that, however you look at them, are just not good enough.”

Looking Forward

“What I love about Mik is his passion and politics,” says Rose. “He cares so much about disabled people. I saw him about a year ago on a current affairs program we have every morning called Victoria Darbyshire, and he was absolutely losing it big time talking to a politician about the state of things for disabled people. I really thought he was going to have a heart attack because he couldn’t quite believe what this politician was saying and was really shouting at him live on air. That’s Mik. If he believes in something, he’s not going to hold back,” says Rose.

That’s the true punk ethic Scarlet has always stood behind. He can be the progressive pipe bomb as he was in the progressive years, but as conservatism tightens its grip, the government moves away from the social model and veers to the right and Scarlet gets older and wiser, his broadcasting background means he can speak the language of the establishment just as easily.

According to Bott, Scarlet’s magic is in skills as a communicator. Since he realizes you win more friends in high places with honey, he is able to effect real change. If you ask him, he’s always been this way.

“My first trip out in the chair, I went to the cinema, and I couldn’t get in because it lacked access, so I met with the manager and made it so it was sort of accessible. That was fueled because at the time I didn’t know how long I’d have, and I wanted to go to the cinema, so why shouldn’t I?”

He uses his life experience as a motivator. “Instead of looking upon the idea you might die one day as a bad thing, it should force you forward because it should make you think ‘when I go, I want to make sure I’ve done everything I want to do’ — and I want to make sure the world I leave behind is a really nice place to be.”

The Social Model Across the Pond

In the United States we’re just starting to see actors with disabilities in important roles consistently on television (RJ Mitte, Micah Fowler, Peter Dinklage) but beyond the occasional special report from John Hockenberry, how often do yet get to see a wheelchair user hosting a TV show on a regular basis?

Mik Scarlet points to his opportunity to succeed as a TV host as an example of how Britain was ahead of the disability curve in ways people often don’t think of. “It’s really weird because we now look to America and say how great America is because it’s got actors that are disabled coming through, but we kind of forget our own history. Britain was really forward-looking a long time ago,” he says. “I don’t think America has the same thing in the media, and I don’t think they are as dedicated to the social model as we are, so a lot of articles written on online outlets like The Mighty still reinforce the idea that being disabled is about the things you can’t do — and not what you’re stopped from doing by the world around you,” says Scarlet.