‘Completely Inhumane’Government’s Relaxed Approach to COVID Represents a Regression for Disabled People’s Rights
By asking people with learning disabilities and their families to live in a ‘constant state of lockdown with no support’, the Government is following an approach to the vulnerable that should have been consigned to the past, says Saba Salman
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The Government’s Coronavirus recovery plan is concealing a regression of basic rights, people with learning disabilities and their families are warning.
While most of the population has lost two years since the first lockdown on 23 March 2020, there are signs that this marginalised group has been set back as much as many decades in independence, visibility and support.
The decision to scrap mask-wearing, social distancing, free testing and nationwide monitoring of the Coronavirus’ spread means that, instead of emerging from the pandemic in a suspended state, people are less confident and active in their communities.
The situation is worse for those who have yet to regain the regular face-to-face health and care support they lost because of lockdown.
The fresh evidence that people are being overlooked in a post-pandemic society follows clear proof that this community was hardest hit during the Coronavirus. This included an initial failure to vaccinate learning disabled people, despite their greater risk of death from the virus, and support staff going without vital personal protective equipment.
Jenny Robinson, an artist from Leeds, is part of the city’s Pyramid art collective. She has a learning disability and is a wheelchair-user. The 28-year-old recently created a digital artwork entitled ‘It’s Scary Being Disabled Right Now‘, reflecting her anxiety about the ‘new normal’.
“For disabled and vulnerable people like myself, we’ve been stuck in for such a long time,” Robinson says. “I didn’t see my family for over 10 months at the start, for the risk of my health and theirs, which was the worst time in the world. It’s affected my mental health massively since then.”
Robinson still wears a mask to help her feel safer, but remains fearful of going out.
“People are scared as it is, and now for you to be at college, school, work or shops with people who have COVID, but you don’t know they have it, it’s terrifying,” she says. “I know we have to learn to live with it but to scrap isolation and then to stop [lateral flow] tests unless you’re elderly or vulnerable. It’s just such a scary time.”
Robinson is not alone in feeling this way.
A recent report by charity Learning Disability England, drawing on the year-long Coronavirus and People with Learning Disabilities Study, reflects the pandemic’s lasting, negative impact on this group.
Based on the views of almost 700 people with learning disabilities and 500 family members, the charity’s paper highlights how less than one-third of people with learning disabilities returned to activities or places they went to before the pandemic. Just half said they got the same social care support as before the Coronavirus crisis and less than half had the annual health checks they were meant to.
Families of people with disabilities are also affected. Research from the charity Sibs, which I chair, reflects how how adult siblings are still either partially shielding or still “living cautiously” to protect their disabled brother or sister.
Sarah Walker moved back into the family home in Cheshire to help care for her brother Dan, who has profound and multiple learning disabilities and is classed as clinically extremely vulnerable.
Given her sibling carer role, Walker does not feel safe returning to the choir she has been a member of for 14 years. She has not had a night out for two years or been inside a friend’s house, used public transport or travelled abroad. Both she and her parents continue to wear masks and carry hand sanitising gel if they go out.
Walker recently launched a petition demanding that the Government continue to provide free lateral flow tests for those most vulnerable to the virus.
“Our family has felt increasingly isolated,” she says. “We are used to prioritising someone else’s needs before our own, but it’s incredibly painful to hear the current narrative that the vulnerable should ‘stay at home’ and let everyone else get back to normal.”
Her brother, who is severely visually impaired, likes to reach out to people and hold their hands. Yet the Walkers have little choice but to continue to socially distance from family and friends, even when this undermines Dan’s ability to communicate.
“It is completely inhumane to ask my family to live in a constant state of lockdown with no support, no ending and none of the community spirit, support and virtual activities that were circulating when everyone was ‘in it together’,” Walker adds.
The lack of inclusion Walker describes is reflected by the fact that politicians investigating the ‘do not resuscitate’ notices received by learning disabled patients have not fully involved learning disabled people in the inquiry.
It states: “For too long, people with lived experience who are most affected by health inequalities have had little or no influence. The way your group has been set up seem like yet another example of this.”
The harsh backdrop to these pandemic-related inequalities is that people with learning disabilities also face the potential impact of reforms to the Human Rights Act, the Health and Care Bill reforms, and the disproportionate impact of the cost of living crisis on society’s most disadvantaged.
The answer, say campaigners including those at Learning Disability England, is for the Government to fill the support gaps created by the pandemic based on what people and families need now.
Sarah Walker says that, for families like hers, successfully ‘living with COVID’ means continued access to lateral flow tests and new post-pandemic guidance on how to calculate risk for different activities.
Today, institutions are – officially at least – relics of the past. But the treatment of certain individuals as an afterthought, along with the lack of visibility and restrictions on people’s lives, are reminiscent of an approach that should be consigned to the past.
As Walker says, “we face a very uncertain future in terms of when we might be able to return to a wide selection of activities that still feel unsafe now that restrictions have been removed… There’s also a real risk that we will become even more invisible and undervalued when people can’t see us”.
Saba Salman is the editor of ‘Made Possible: Stories of Success by People with Learning Disabilities – In their Own Words’. She is the chair of the charity Sibs, which supports the siblings of disabled children and adults. Her sister Raana has a learning disability and Saba has seen how the loss of face-to-face contact, reduced social activities and anxiety over the easing of restrictions have affected her confidence, wellbeing and independence