The Highs and Lows of 2021A Disabled Person’s Perspective
Penny Pepper shares some of the enduring inequalities and the memorable breakthroughs which characterised the past year for disabled people
When attempting a review of 2021 from a disability perspective, it’s hard to avoid the Coronavirus pandemic.
Discussing this with my networks, friends and colleagues, I asked: was there anything beyond COVID-19?
We already know the horrific statistics that disabled people have been disproportionately affected by the virus for reasons that are not entirely clear. According to the Health Foundation, “there has been a surprising absence of analysis of the reasons for this particular inequality”.
But some of the impacts on disabled people that have not received as much exposure include chronic loneliness, a multiplying of barriers and exacerbated isolation. If you are already restricted by barriers to your freedom – along with limited support – it’s no wonder that COVID-19 has increased them.
It is difficult for anyone not to sink into the psychological effects of this ‘new normal’ – a mindset likely to deteriorate with the Government appearing to give up on those citizens that it has corralled into the paddock of the ‘most vulnerable’. Indeed, Long COVID may bring new members to the disability club – and no doubt the shock at how much discrimination and even abuse disabled people face will leave many reeling.
Add to this the impact on the NHS. Many chronic secondary health conditions disabled people already face cannot now be treated regularly or in time, resulting in complications that are more serious – more expensive – in the future.
The Government’s much-delayed non-event of its health and disability green paper – ‘Shaping Future Support‘ – was a repeat exercise in old policies boiling down to the idea of ‘can we make this cheaper and get you back to work?’. It disregarded the ‘social model’ of disability – which examines how society is organised in a way that is non-responsive to disabled people – opting squarely to ‘improving’ the lives of individual disabled people.
The Health and Care Bill likewise was met with mixed responses. Disabled people hardly merited a mention in it and the proposed legislation remains a confusing, contradictory effort. As reported by the King’s Fund think tank, “the bill falls far short of a meaningful commitment on social care”.
Disabled activists roll their weary eyes. Social care is already in tatters; the battlefield and the casualties mount up even now. From being denied support to use the toilet at night, to endless heartless ‘assessments’, the current approach is obscene and counter-intuitive to the original purpose of a welfare state. Unsurprisingly, not one person supported the Government’s approach when I issued a call-out for views across my networks. May the Gods help us all if this bill is implemented.
2021 also saw the independent peer Baroness Jane Campbell and others speak out to support the continuation of ‘hybrid’ online working, although a number of disabled people reported that it was not always an easy option. Like most people, we are missing the interaction with other human beings – the right to do this, to be within a community in the outside world, is something for which disabled people have campaigned fiercely, whether it’s through the independent living movement or the closure of vast mental asylums.
It is not for the first time I feel that disabled people are more acutely aware of what it means to lose basic freedoms than their non-disabled counterparts.
Some Memorable Highlights
Determined to find some highlights in 2021, I was reminded of some breakthrough moments within society and the media.
Channel 4 reported an overall viewing figure of 20 million for the Paralympic Games. Some people with Down’s Syndrome secured the right for their campaign to challenge what they believe is a discriminatory abortion law at the High Court, hailed as a ground-breaking action for people with learning difficulties.
We saw the deaf Eastenders actress, Rose Ayling-Ellis, win BBC’s Strictly Come Dancing, irresistibly lifting the mood of many and leading to a huge interest in learning BSL. Veteran disabled actor Liz Carr was on TV a lot – including in a recent episode of The Witcher, wearing a fetching ginger wig, and in the much-delayed release of the Hollywood film Infinite. The Bookseller – the industry magazine of publishing – even had a ‘disability special edition’. Responses may have been mixed, but it’s a great start.
One of my favourite highlights was screenwriter Jack Thorne’s MacTaggart Lecture at the Edinburgh TV Festival last August. As an old-timer still determined to tell the widest disability story, Thorne’s words encourage my cautious optimism. His lecture was important because we remain ignored, side-lined, overlooked, patronised, second-class, and sometimes hated without much condemnation. We need to be heard.
Our visibility on TV, in particular, is increasing and stories are moving away from the tired clichés of ‘pity porn’ and its flip-side twin ‘triumph over tragedy’. What happens behind the camera counts for just as much in terms of equality – from who is writing material to who the make-up artist is. As Thorne observed, “TV has failed disabled people”, and there is a lot to do. The statistics on this make a mockery of inclusion initiatives – and committees and forums and think tanks – that I have been privy to for more than 25 years.
A story helps us become human, but as the biggest marginalised group comprising 20% of the population, we scarcely make up 2% anywhere within diversity streams. Our chronic absence from the mainstream narrative links directly to institutional discrimination, including disabled people have been treated during the Coronavirus pandemic and the ongoing scandals with the Department for Work and Pensions (always a low point).
Among my personal highlights in 2021 was writing for Byline Times and the engagement with readers.
Surviving my working-class background, 1970s power cuts as a kid and Thatcher in the 80s, it’s good to look back on what we’ve all survived – and I remain optimistic with the grassroots disability activism that continues. Together, let’s look out of the window – watch less mainstream news and wait for the sun.
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