As a disabled person, you’re forced to repeatedly explain your medical history – but for this article, I think it’s important. I was born with a very rare type of cancer called a neuroblastoma. In 1965, it was pretty much a death sentence. Luckily, I took part in a clinical trial and, with only days to live, I had major surgery, radiotherapy and chemotherapy with a new drug. Despite being given no more than five years to live, on my last birthday I celebrated hitting 60. I doubt anyone in 1965 would have imagined how attitudes towards disabled people would improve as I grew up. It is devastating to see how those same attitudes have reversed in the past decade or two.
The cancer left me with a paralysed right leg, so I wore a leg brace, but otherwise I was a pretty normal kid. I was lucky to be starting school in 1970 when the Chronically Sick and Disabled Persons Act came into force, which made it possible for disabled children to attend mainstream schools, if they could manage it. My parents moved across Luton to be near the only school that would accept me on a trial run and then as a pupil. When I was a child, if you could manage living like non-disabled people then you were allowed to do so. Not the fully inclusive practice I later campaigned for, but an acknowledgment that disabled people shouldn’t be written off.
At 15, my spine collapsed and crushed the nerves to both legs, an unforeseen side effect of chemo. After months in hospital I came home a full-time wheelchair user. I was lucky our town centre in Luton was very wheelchair accessible and, during my time in hospital, my high school put in some serious adaptations to ensure I could return. Accessible toilets and a lift meant I could take my exams without any real difficulty, thanks to Putteridge high school and the then headteacher, Mr Price. At Luton sixth form college, adaptations were made again, this time under my guidance. Through the course of my childhood ideas around disability had changed from “if they can, let them try” to “what can we do to help them succeed?” and even “what do they want us to do?”
That was the overarching attitude I encountered for the next 20 years. Some viewed being disabled as a tragedy, others as part of life. Most people saw any help that we received as important and something a healthy society should be offering. The exception was the workplace. I tried two jobs, both of which ended in me being sacked because I took a couple of days off. One was because I broke my foot in a lift that was too small for my wheelchair, the other was following a car accident. Both times, taking sick leave was seen as proof that disabled people couldn’t manage the world of work. So I focused on my hobby, music, and was soon touring the UK and Europe playing in bands. This led to my discovery by a TV producer. I ended up on the BBC, ITV and Channel 4, where my show Beat That won an Emmy. My media career, as one of the first disabled celebrities, lasted more than 15 years and only ended during a period of ill health.
In the late 90s and early 00s, I found attitudes became twisted towards an angrier, almost jealous view of disabled people. My Motability vehicle was vandalised repeatedly, because local people were upset about my “free car”. This morphed into “free car, free house and loads of benefits” as Tony Blair’s government, from 1998 onwards, implemented cuts to the benefits bill that scapegoated disabled people. I was attacked twice, my car was vandalised every week and my wife was beaten to a pulp by three people wearing masks. When they threatened to burn our flat down, we packed up and left our fully adapted home to rent somewhere that was safe from violence but totally unsuitable. The police? Useless.
My own brother even once spouted that it was “all right for you with your free car, free house and benefits cash”. It was especially galling as I had worked most of my adult life, paying taxes. The only time I stopped work was when I was very ill. My wife cared for me during this time, and we went from earning about £50,000 in joint income to being paid £15,000 in benefits to cover everything, including our rent. Luckily I got well again, retrained and went back to work as an access consultant.
But those toxic narratives seem to be getting worse, and have become embedded in the national psyche. Successive governments and the media have continued to tell the public lies, such as the much repeated accusations of huge amounts of fraud within the so-called “disability benefits” system that has led to terrifying levels of anger. Only a week ago I was punched in the street for being a “scrounger”.
I call them lies because that’s what they are. Motability is not a free car. It is a vehicle that is leased for a set fee over a three- or five-year period. We don’t get a free Mercedes or BMW. We make a huge upfront payment and it costs the same per week as a tiny little car. And personal independence payment (Pip) is not an out-of-work benefit. It is paid to support independent living, based on people’s ability and support needs. No one is getting it for tennis elbow. In fact, Pip and its forerunners allowed me to work, and my Motability vehicle lets me travel the UK working as co-CEO of the national charity Phab. The access to work scheme saves employers money by paying towards the adaptations and support a disabled worker might need. It brings in £1.48 for every £1 paid out, with the wider economy benefiting by £3.86, according to research carried out by the Royal National Institute of Blind People.
As we mark 31 years since the Disability Discrimination Act and 16 since that was superseded by the Equality Act, please don’t believe the hype around disabled people. Try to imagine a day walking in our shoes, or pushing our wheels. Before you allow the hype around “the freebies” we get, do some research. My wheelchair alone cost me £6,500, for example. No support; that was all out of my pocket.
As I visit the clubs and events Phab supports I meet many disabled people who can only dream of having a life like mine. But shouldn’t all disabled people have the chance to shine? When I was young I had hoped that the future would allow disabled people to fulfil their potential, and let them lead the discussion around making society more accessible and inclusive for everyone. An accessible, inclusive society helps us all. Take the lift, the ability to text and voice-to-text software. All designed to help disabled people, but now a boon to us all. If disabled people are listened to, everyone benefits.
I doubt many of us considered that things would get worse, but if disabled people are allowed to tell the reality of our lives maybe we can get back to a positive place. One where being disabled is just part of daily life. Not sad or tragic, or a licence for free government handouts. Just normal.
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Mik Scarlet is co-CEO of the national charity Phab, a campaigner and a music journalist for Blitzed magazine
