Lockdown so far: I gave up drinking and started running. Couch to 5k. I gave up and started again. Baby drinking. And running. Badly.
Monday. NHS England said they weren’t going to publish the COVID19 death figures of learning disabled and/or autistic people. The data would be packaged in the 2021 Leder review. Leder 2021. While deaths continue. Unacknowledged.
Running. 1.5 minutes. 3 minutes. Week 3. The same run three times. A lot of walking.
Wednesday. A shift in position. The data would be bunged to Public Health England (PHE) for analysis. A masterclass in vagueness. Careless shiftiness. Rebecca Thomas wrote this piece quoting PHE Director, Dr John Newton.
‘More likely to have health problems…’ says Newton, casually revealing ignorance underpinned by prejudice. Grim combo in anyone. Terrifying in a senior public health figure. How in the actual hell on a mouldy cracker drizzled with stench cream can you direct Public Health England without a scooby about health inequalities?
‘Any findings will be considered’ he added, stating the bleeding obvious. Only there is no bleeding obvious for certain people. Only hard won baby steps which remain under the constant shadow of obliteration. Also in the piece, Tim Nichols fights for a seat for autistic people at the death stats table and the new Mencrap ‘leader’ chips in with a weak, throwaway ‘it’s unacceptable’. [Of course it’s unacceptable. Is this really what you get for a three figure salary?]
An anonymous, hate filled comment under the article was removed after intervention by people on twitter. ‘They bring it on themselves, getting special dispensation to go out more than other people, killing people by their actions…’ This is the gist. Paraphrased.
There is no bleeding obvious. There is no collective outrage around inciting hatred of certain people. COVID19 is like a lightening rod, generating viciously bright sparks illuminating what those in the know know. Have known for decades. And yet it still it takes pressure to make people turn their heads. To encourage people to see what is now grotesquely visible. A labour that never ceases, never eases. Despite the solid and equally committed collective of allies, self-advocates, families, education, health and social care staff, politicians, human rights specialists, journalists, academics and so on.
Thursday. A small group of these concerned citizens got in touch with some of a core of legal experts leading legal challenges to the current denting or worse of human rights. Could the decision to not publish the data be judicially reviewed? Apparently so. At the same time, Harriet Harman wrote to Hancock requesting the data be published:
Running. 1.5 minutes. 3 minutes. Consistent and steady. Well thought through. No sudden moves. Plenty of walking.
Friday. The Medical Director of NHS England and Improvement [for certain people] said the data from acute hospitals would be published during the daily press briefing. No other news. No mention since. No update published online. Nothing.
This week local BBC ran a piece on Soundabout:
It is truly joyous. I catch the bus to work with Sam sometimes (had no idea he is such a fab singer). He works at Brookes at Harcourt Hill and catches the U1 because he likes the stop announcer’s voice. I’d never noticed her before. Have a watch with a cuppa, and maybe a choccy bic or two, and tell me some people don’t count.
Then think about the shoddy and slippery way some people’s deaths are treated. People who almost inevitably lead shortened lives because of the way they are treated in life.
[More on the legal action later.]
mydaftlife 
I remember visiting Soundabout when I lived in Reading and was a newly qualified Music Therapist, about 18 years ago. We have some of their resonance boards at my workplace. Wonderful, demonstrating music’s power to unify and to transcend difference. Sam’s rendition of Amazing Grace is beautiful.
What the BBC report didn’t say was that like many charities, the virus has rocked Soundabout finances and they could do with help. The film is brilliant. You can read more about them and find out how to support them here: https://www.soundabout.org.uk/
‘People with learning disabilities are generally more likely to have health problems than the general population…’ said Dr John Newton, ‘and sadly they die younger on average, then the general population.’
In one sentence his ignorance and inexcusable prejudice is exposed.
We weren’t aware of that fact because in our domain the people my brother and the people he had lived with for 16 years were physically active and in good health. He was more robust and healthier than me. It appears that Public Health England failed to inform Primary Care and NHS MH trusts that he and the people he lived in were fragile and needed continuing healthcare. Following my brother’s death we were left to discover for ourselves from his medical records that his care plan stated requirement for regular blood tests had been silently withdrawn back in 2002. Those tests weren’t in place for any present or continuing health problem but to check if a health condition had occurred, just as with all of us. This meant the dangerous cocktail of drugs he was forced to be complaint were never checked. This raises the crucial question for Public Health England, how many people with a learning disability are prevented from living their full natural life span because they are the silent, hidden victims of prejudice and institutional neglect, in all its ugly forms. A conveyor belt of deaths by indifference exposed in the last few decades relate to people with a learning disability having their lives robbed by various degrees of criminal-level negligence, not because of any natural inclination to physical fragility and poor health. Those are the few we know about, often because families have smelled a rat. How many others?
Jonna I agree with all you say.
The video from Soundabout and the music and joy of it’s inspirational singers and musicians has moved me to tears. What wonderful respite for us all to see and hear them. Thank you all at Soundabout and to the BBC for sharing this with me. All round the country similar groups are enabling music, drama and joy for us ,by talented musicians and actors.
On a more sombre note: The beliefs so recently and openly broadcast, that if our sons and daughters die from this pandemic it is because they are so programmed at birth by their intellectual disability – are wrong
As a very much older parent I have lived through many decades of tides that washed in and out over the lives and talents of people with a learning disability Over the decades I have added my own beliefs, energies and passion to so many other parents, who for a time have lit a better and brighter path for our boys and girls – now men and women. There have been many brilliant advocates who helped us, but often hopes and joys were dulled by others – paid only to help us.
Our sons and daughters do not die from their intellectual disabiliies.
They can be put at risk from harsh cuts in services and support. They can grow sicker from,a lack of timely access to health care. And they can die in slow inches over long years lost in ‘homes’ that the ‘able’ would experience as punishment and a prison
Witness the lives of people with families able to go to battle for them in order to oversee their health and defend their ‘care’ – as against those with none.
Our sons and daughters do not die too young from intellectual disability..
But they can die from from the indifference of others – and from the belief that they are worth – ‘less’.
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As an 80 year old with co morbidities, (Diabetes 2, COPD,& a dodgy mitral valve) I can confirm that gross incompetence within NHS England and its off shoots is widespread. Last Thursday May 8th. I received a text message advising me that I was at risk and should remain in total self isolation until June 30th. 2020 . When I logged on as requested I received details and along list of the benefits I could receive , including food deliveries.
If I had not organised myself I might well have starved waiting for a food parcel or a chat on the phone. Both offered to me last Thursday. The front line NHS workers are incredible but the admin is worse than ever.
I just read the guardian piece by Rory Kinnear about his sisters death absolutely rending