Like Jo Whiley, Our Family Faced A Terrifying Wait For My Sister’s Vaccination – Disabled People Have Been Sidelined And Forgotten

'My family and I have spent every second of the last year living in fear.'

Emma and Bess

by Bess Browning |
Published on

‘My sister has Covid. I don’t feel shiny and happy tonight, I feel scared.’ As Jo Whiley Tweeted about her disabled sister, Frances, being admitted to hospital with Covid-19 this week, I suddenly found myself trembling with tears. My heart ached for Jo and her family and this nightmare scenario hit home for me. It is one my family and I have spent every second of the last year living in fear of.

It’s been four months since I last saw Emma, 32. As I stood outside her carehome in the spitting rain, a window became a glaring barrier between me and my sister. As she sees me through the glass, her face scrunches into a mix of emotions which oscillates between a buoyant recognition and a state of pure confusion. ‘Emma,’ I say, trying to articulate my happiness at seeing her and offer reassurance but it’s difficult to express behind a cold blue, surgical shield and a double glazed window. I held back my tears as her delicate hand reached out to me.

It has been a year of these unsettling meetings and a year since Emma has experienced any normality in her life. Emma has profound learning disabilities and although she won’t understand the gravity of the pandemic, she will no doubt be aware of the monumental impact it has had on her life. Visits have been restricted or not allowed, Emma can’t visit family (she was once staying at our parents’ house every two weeks) and the activities which once made up the colour of her life disappeared over night and never returned.

Mencap reports that 9 in 10 people with a learning disability have not had the services and support they rely on restored since the first lockdown. Their physical and mental health has suffered catastrophically. Last summer, when we were all let loose in a near unrestricted world, Emma simply wasn’t given that same freedom. She was once going swimming, horse-riding, to the pub with carers and friends, out for bus trips around the local area, but now, there is nothing. The level of isolation in the disabled community is unprecedented.

People with a learning disability are not just suffering mentally. They are dying from Covid-19 at six times the rate of the general population. Those aged 18-34 are 30 times more likely to die from Covid-19 than their non-disabled peers. Even writing those figures makes me shake. When the virus swept the UK last March, our first concern was for Emma, but our efforts to protect her didn’t come without hurdles.

Her carers are irreplaceable - some of the most compassionate and diligent people I have ever come across, who deal with some of Emma’s exceptionally challenging behaviours - but just like carers across the social care network, they were not initially given the tools (guidance around carehome visits) and protection (PPE) they needed.

Then, our mum and dad, Mel, 59, and Steve, 67, were made aware that Do-Not-Resuscitate Orders were being placed on the files of people with learning disabilities. It seemed abhorrent - was my sister’s life not worth fighting for? Our parents worked with Emma’s carers to put in place an end-of-life plan, something which they never dreamed would be necessary. Shockingly, Mencap reported this week that Do-Not-Resuscitate Orders were still being put onto disabled people’s files.

The reason it has been four months since I’ve seen Emma (apart from FaceTime) is that Covid-19 hit Kent much worse in the second wave. Inevitably, despite best efforts to keep the home safe, a number of Emma’s carers and another resident tested positive for Covid-19. Working and living so closely to Emma, our worst fears were exacerbated.

Fortunately, Emma continued to test negative for the virus, and when the vaccine was rolled out, we started to relax. Surely, given the staggering death rate, people with a learning disability would be made a priority. But it wasn’t to be. Emma, despite her vulnerability, wasn’t a priority. It felt, yet again, Emma and others in the disabled community, had been forgotten about during the pandemic. So, it took weeks of letters and phone calls from Emma’s care managers to the local care authority to get her on the list. And in some stroke of luck, Emma received her vaccination last week - a moment of relief at last.

But not all families are experiencing this peace of mind. People with a ‘mild or moderate’ learning disability are not yet a priority on the vaccination list, despite the fact that 65% of deaths within the disabled community are those with a ‘mild and moderate’ disability.The government needs to take immediate action to correct this ultimately fatal flaw. This was something Jo Whiley continues to campaign for. It is time the government stood up to their responsibilities and protected the most vulnerable in our society. For Emma, for Jo, for everyone with a disability and their families.

Main image: Emma pictured with her sister Bess, before lockdown.

Read More:

Why Did Jo Whiley Get The Covid Vaccine Before Her Sister?

Coronavirus And Ableism: The Disabled And Elderly Communities Refusing To Remain Silent

Brain Fog And Endless Fatigue - The Relentless Nightmare Of Long Covid

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