It’s been 27 years since the Disability Discrimination Act was passed, and almost 12 since its provisions were updated and included in the Equality Act. You might think disabled people’s rights were well protected under the law. Well, think again.
You only have to look at what happened to us during the pandemic—and the lack of associated outrage—to see that disabled people are not just considered second class citizens, but sometimes treated as unworthy of any protection at all. In the summer of 2020, some GPs issued blanket “Do Not Resuscitate” orders on disabled people living in care homes and, in March 2020, PPE for social care users was diverted to hospitals. Around the same time, NICE issued guidance—quickly withdrawn—advising clinicians that if lifesaving treatment had to be rationed, a patient’s “independence” should be taken into account. In the first two waves of the pandemic, nearly two-thirds of people who died were disabled.
While disabled journalists made every effort to report on these stories, they rarely made headline news. This is in spite of that fact that disabled people have, by a huge margin, paid the highest price for the pandemic, losing vital care, important social and employment networks (especially when lockdowns lifted but we were still stuck inside), as well as for many, their lives. If evidence was needed that the rights of disabled people still count for very little, the last two years have provided it in spades.
As we tentatively emerge from the darkest days of the pandemic, we cannot forget what has happened to us. Instead, we must reckon with this horrible legacy and ensure it is never repeated. We know that pandemics will become more likely due to climate change, and when the next one surely comes, disabled lives must not be treated as collateral in the quest to “get back to normal.” We need to root out ableism from its entrenched place in the health service and our society. We need a new disability rights movement.
In March, the BBC show Then Barbara Met Alan became the first primetime drama about the 1990s protests that led to the passage of the Disability Discrimination Act. It was a good reminder—after the past two years of atomisation—of the power of collective action. But it was also a reminder that the government of the day initially opposed the act, just as our government last year rejected calls for an inquiry into the high death rates for disabled people during the pandemic. Even more depressingly, the BBC drama highlighted how some of the very same issues the 1995 act was supposed to solve persist today. From inaccessible transport to the contemptuous pity with which disabled people are met when going about their everyday lives, we are still fighting the same battles. The case for radical change is clear.
What would this new movement look like? If we learned anything from the 1990s, it's that taking to the streets works. So, let's start there. We should be out, demanding changes to the care system, the benefits system, the health system, the education system. We should be noisy and disruptive, as hard to ignore as our predecessors were when they chained themselves to buses and brought traffic to a standstill. Real change requires us to be visible and visibly angry. But we've also got tactics available to us that just didn't exist last time around: social media, podcasts, YouTube and more social capital in companies and organisations that have embraced diversity. We know from bitter experience that changing the law isn't enough; what we really need is attitudinal shifts.
So a new movement needs to work on changing how disabled people are perceived. For that we need one crucial thing: better representation. We need to see disabled people in our cultural lives: on TV and in magazines, on stage and in books. And these stories need to be full, vibrant, and themselves diverse. We can no longer be reduced to pity- or inspiration-porn narratives. Culture is not enough, either—representation must extend into our boardrooms and schools, government and science, sport and healthcare and everything else. It is only when we are visible that we have power. A key demand of this new disability rights movement must be for the kind of equal opportunities work and pay gap reporting that have been implemented for women. Then perhaps the laws meant to protect us will be meaningfully enforced.
Last month I had the honour of meeting Barbara Lisicki, one of the founders of the Direct Action Network, the group which forced the passage of the DDA. We chatted about the BBC drama based on her life and the work she had done, but her focus was on the future. It’s the turn of a new generation, she told me. “Get back out there. There’s so much to do.”
