The pandemic presented a chance to improve disabled people’s lives. Instead, they’ve yet again been left behind
Today is the UN’s International Day of People with Disabilities. This year’s theme is, optimistically, securing rights for disabled people in a post-pandemic world. The thinking goes that the past two years have proved that – as we’ve seen in the vast shifts in how we socialise, travel and work – societies can and do change. So why not harness such change to make the world better and more accessible for disabled people? Possibility is in the air as we all decide what the future could look like.
Indeed, for some disabled people, the pandemic has brought positive changes already. For those with mobility impairments or fatigue conditions, the advent of a real home-working culture has opened up new job opportunities – even whole careers – that they couldn’t access before; allowing some to become economically active for the first time. And it’s not just the world of work. While many have bemoaned Zoom fatigue, online shows and chats have enabled some disabled people to participate in culture and society more than ever before. If we are to ensure the future is better for disabled people, retaining digital access is a must.
Yet despite these advances and the UN’s admirable focus on progress, the truth is that moving forward from here requires us to reckon with what has really happened to disabled people during the past 22 months. In the UK, things have been incredibly bleak. Over and over again, disabled people have been, at best, second class citizens and, at worst, barely treated as people at all.
At the start of the pandemic, when PPE was in short supply, vulnerable disabled people and their carers reported their orders of masks and gloves being commandeered for the NHS, putting them at huge risk. Many were told to shield but then didn’t receive any support to get hold of food, medicines or other essentials. The Coronavirus Act, passed by Parliament, weakened people’s right to adequate care. Then came reports of disabled people being asked by GPs to sign Do Not Resuscitate (DNR) orders, so that if they ended up in hospital with Covid – or anything else – they would be denied the highest levels of treatment. In some instances, care home operators were asked to authorise DNRs for all their residents; a blanket assumption that these people were expendable, were not worth trying to save. The horror of it was indescribable.
Even the vaccine roll out, despite being generally heralded as a success, left disabled people behind. In January and February of this year, social media was awash with stories of those with high-risk conditions being left off the priority list. The same happened when the booster roll out started (I personally had to call 119 approximately seven times, only to find there was no record of my earlier priority status or, indeed, my cerebral palsy). Private and unpaid carers, the latter of whom often look after some of the most vulnerable people, also struggled to prove their eligibility for an early jab. Once again, it’s disabled people who are left paying the price for bureaucratic incompetence.
And then, when the country started to open up, disabled people were kept inside their homes – out of sight and out of mind – because the government refused to prolong simple measures like mask-wearing and testing for large venues. Disabled people have just as much right to safety when they go to the pub or a concert as anyone else, and yet these rights were simply trampled upon in the rush back to normal – a “normal” that had never fully accepted disabled people in the first place.
When we expressed concern online, we were told that we were curmudgeons who wanted lockdown to last forever – or, even more depressingly, that healthy people couldn’t possibly be held responsible for protecting everyone else. The government abandoned us and the public were more than happy to get in on the act.
How many times did we hear parents told not to worry about sending their kids to school because “only” disabled children die of Covid? How many young people justified not getting vaccinated because Covid is mild “unless you’re already ill anyway”? How many people decided they’d ignore the rule of six and then “just not see anyone vulnerable” – betraying that either they don’t have any disabled friends or, if they do, that they’re happy to leave them isolated and alone for a few more months for the sake of a night out?
Many disabled people hoped that the experience of the pandemic – being unable to go where you want due to issues far beyond your control, unable to access medical help, and left to fend for yourself in a highly uncertain situation – would give others a sense of what life with a disability is like, and spark an understanding of the need for change. What seems to have happened, though, is that people had a taste of disability and concluded that it was so bad that actual disabled people could be sacrificed in the escape.
Some have argued that disabled people would inevitably bear the brunt of any pandemic. But let’s consider the true consequences of writing off hundreds of thousands of people. The figures are stark. Of all the people who have died of Covid, nearly 60 per cent have been disabled, according to the Office of National Statistics. As disabled people make up around 20 per cent of the population, depending how you measure it, this represents a huge imbalance – and tens of thousands of lives unjustly cut short.
These facts cannot simply be swept under the rug in the hope that tomorrow is not quite so awful. Disabled people’s rights and, indeed, their lives, have been rendered expendable by both the government and society at large. They should be at the forefront of the upcoming public inquiry. We must face the truth of what has happened and learn the lessons. Otherwise, any pretence at progress will be built on the flimsiest, and saddest, of foundations.