On Wednesday, the government announced that all individuals on the learning disabilities register will be prioritised for a coronavirus vaccine. The move came after an outpouring of public outrage when DJ Jo Whiley revealed that she was invited for a vaccine before her sister Frances, who has a genetic disorder and lives in residential care. Frances Whiley was later hospitalised for the virus, but has since returned home.
Three families whose loved ones have a learning disability spoke about what the change means for them.
‘It’s a shame it’s taken a celebrity to speak out and change things’
“There’s a huge sense of relief … but it’s a shame it’s taken a celebrity to speak out and for the public to be aware to change things,” said Adele from London, whose 45-year-old sister has a learning disability and lives in supported housing. She compared Jo Whiley’s influence to the impact footballer Marcus Rashford had on the government’s repeated U-turns over free school meals.
“Obviously people with more severe learning difficulties were up there [in the vaccine priority list], but this group of people are still really susceptible. My sister has lots of health conditions, but there are healthy people in their 50s who might not be as susceptible as my sister, and who are getting their vaccines. It feels like, hang on, you’ve forgotten a whole group of people.”
Adele said that her parents had been deeply affected by Whiley’s story, saying that it helped to have someone in a similar situation share their experience so publicly.
“What Jo Whiley has done has been incredible, to speak out during a very difficult period for her personally, to raise awareness of this nightmare for so many,” she added.
“The stress of what will happen if they catch Covid, not only being more susceptible to suffer more health-wise , but also the stress of them being in that situation, in hospital, being hooked up to oxygen and how difficult that will befor someone who is scared.”
‘Everybody’s frightened that the virus will get into the house.’
Jan, 64, who looks after her 22-year-old son, who has autism and a learning disability, and his elder brother, 24, who has autism and anxiety, said the pandemic had infused her home with fear. She believes full-time carers also need to be on the priority list for the vaccine.
“It’s brought a lot of stress to the family because everybody’s frightened that the virus might get into the house,” she said. “If my sons were hospitalised they could not cope. I could identify with Jo Whiley saying her sister was so stressed that she was running around the hospital in panic. People with learning disabilities are quite fragile beings because they just don’t understand the world around them.
“I have also been frightened that I may catch the virus and be hospitalised because I have asthma and high blood pressure. I’m classed as clinically vulnerable but my health concerns are not even a consideration really. I don’t know how my husband would cope because you can’t leave my [younger] son on his own.”
Jan said she had lost the little respite from her caring responsibilities that she enjoyed before the pandemic. “People with autism like their own space, and when there’s five of you all shut in the house together, there’s not an awful lot of space to get through,” she added. “It sounds pathetic, but I’m so desperate just to go for a walk around TJ Maxx and go to a coffee shop. That’s what I could do before. But even shopping isn’t a relaxation now, because it’s so stressed.”
‘It always feels a bit like you’re a second class citizen’
Emma, a special needs teacher in Hertfordshire, hopes that the news will mean a vaccine is on its way for her 20-year-old son, who is on the learning disability register. Her son, who has learning difficulties and autism, is due to return to college when it reopens on 8 March, and Emma said that it would be a “massive relief to know he has that protection”, especially because he also has a heart condition.
However, Emma said that the delay in prioritising those with learning disabilities was reflective of their wider treatment in society.
“From when he was a baby, having a learning disability and a health condition, it always feels a bit like you’re a second class citizen. You don’t get the same treatment, and I think it’s so entrenched that people just aren’t aware,” she said. “ Covid has of course emphasised all the institutional inequalities in our society but the impact on young people with learning disabilities has been truly shocking and mostly overlooked. It makes me so angry their lives are not valued by society and often by medical professionals.”
“They definitely should have been included at the start.”
