Sunday 11th April 2021 – Autistic at Times of Covid-19: DNR Orders + Links

Hi everyone!

I wasn’t going to write a blog today. But, unfortunately, something’s come up that meant I had to write something now and get it out. Bonny Hazelwood, a neurodivergent journalist, contacted me today regarding a petition, on the issue of Do Not Resuscitate Orders and autistic/learning disabled people. Find her website here: https://www.bonnyhazelwood.wordpress.com/

In the UK, Do Not Resuscitate (DNR) orders, also known as Do Not Attempt Cardiopulmonary Resuscitation (DNACR) orders are medical treatments reserved for palliative care. I had not planned to write about this topic at all today. In fact, I wrote about it in May 2020, for a start-up charity I used to be a part of. I have made small changes. Facts correct at the time of writing:

In this pandemic, many have written about the effects of Covid-19 on vulnerable groups, such as the elderly and those with pre-existing conditions.

In early April, there was an outcry regarding so-called Do Not Resuscitate-orders or DNR. In the UK, only doctors can sign these, based on the efficacy of resuscitation for certain patients. These orders are given, for instance, when a patient has terminal cancer and intubation would cause unbearable pain and prolonged suffering. This is to stop unnecessary suffering on the part of the patient. Clinicians have to make these decision on an individual basis and are updated based on changing information regarding the patients

It appeared though that these orders had been abused, to count certain groups as not requiring resuscitation under these very orders. Apparently, that included our community.

Because we’re autistic, we wouldn’t be saved if we suffered from Covid-19 and needed resuscitation.

Now, NHS England has made it clear: DNR orders are NOT to be used against disabled, learning disabled and/or autistic people.

But there have been people expressing concern that these rules are not being followed consistently. That means that certain clinicians in certain trusts may still be signing these orders, despite what Public Health England said.

On DNR/DNCPR (do not resuscitate) Orders:
https://www.theguardian.com/commentisfree/2020/apr/09/nice-guidelines-coronavirus-pandemic-disabled#maincontent
https://www.disabilityrightsuk.org/news/2020/april/covid-19-and-rights-disabled-people
https://www.disabilityrightsuk.org/news/2020/april/response-open-letter-covid-19-and-rights-disabled-people
https://www.change.org/p/uk-parliament-stop-covid19-dnrs-being-issued-to-elderly-disabled-autistic-learning-disabled-people
https://www.theguardian.com/commentisfree/2020/apr/08/do-not-resuscitate-orders-caused-panic-uk-truth
https://www.theguardian.com/commentisfree/2020/mar/17/coronavirus-force-nhs-terrible-choices-covid19
Public Health England’s response:
https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/04/C0166-Letter-DNACPR.pdf

The problem seemed to have gone away by the summer, when deaths and hospitalisations slowed down.

But now, it’s back. There seem still to be blanket statements going round that define autistic and learning disabled patients as lesser-than. Having done plenty of research on the T4 programme in Germany in the 1930s, this institutional shift defines us as life unworthy of life. This needs to be fought.

Do Not Resuscitate ‘scandal’

https://www.theguardian.com/world/2021/feb/13/new-do-not-resuscitate-orders-imposed-on-covid-19-patients-with-learning-difficulties

https://www.itv.com/news/2021-03-18/widower-learned-in-wifes-final-days-do-not-resuscitate-order-had-been-made-without-consent?fbclid=IwAR0Y3kD7mWBtrIavQbh86pfwMseBp5Q92xpdVIGX92YMZ0U2EFlxPk9QqTA

The articles above give more recent information. It is still happening.

Please sign the petition below:

https://www.change.org/p/matthew-hancock-mp-a-reversal-on-do-not-resuscitate-orders-for-covid-19-patients-with-learning-difficulties?recruiter=false&utm_source=share_petition&utm_campaign=psf_combo_share_initial&utm_medium=whatsapp&recruited_by_id=a6fff670-9b00-11eb-ae85-c3a6e447e8e0&utm_content=washarecopy_27346772_en-GB%3A0

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Some links:

Osime Brown: Out of prison, still liable for deportation!

I won’t be able to make this, but please try to make it if you can. Osime’s mother should not have to fight this alone. Sign the petition, originally created by Emma Dalmayne (a hero in her own right and to be found here: https://autisticinclusivemeets.org/about-us/emma-dalmayne/. Find the petition here: https://www.change.org/p/home-office-stop-the-deportation-of-vulnerable-autistic-man-osime-brown-2f671100-bd95-423c-a547-c8b04da2a75a)

In what world is Autism a crime? Come out and let your voices be heard!!! Silence is violence!!!

LONDON PROTEST FRIDAY 16TH APRIL. Help stop Osime’s deportation. Please join us in fighting for Osime’s justice and freedom outside the home Office.
1pm-4pm
2 Marsham Street
London
SW1P 4DF

This will be a peaceful protest, we will be observing social distancing rules and advise those that are not exempt to wear masks.

Hand gel is also advised.

Please join us and bring banners and placards, home made signs are just as good.

Osime desperately needs our support, this deportation MUST be halted.

399, 266 people have now signed the petition to ask Osime be allowed to stay:
#StopTheDeportation#SOLIDARITY
#justiceforosimebrown

Have a look at these articles to learn more about Osime.https://www.voice-online.co.uk/news/uk-news/2020/03/12/shadow-immigration-minister-attacks-callous-treatment-of-autistic-detainee/

https://www.mirror.co.uk/news/uk-news/mum-fears-autistic-son-learning-23413384

“Callous” treatment of autistic detainee attacked by shadow immigration minister

Matthew Rushin is home!

https://news.yahoo.com/autistic-man-matthew-rushin-released-211800142.html

I hadn’t written about it yet, but Matthew Rushin has been freed. This is a huge victory for all of us who helped his family financially and by petitioning governor Northam; but mostly, it is a victory for his mother. Matthew is amazing and I hope he has the time and space to recover from what’s he’s been forced to undergo.

Harry Wright’s solo show

Here’s a message from my friend, comedian Harry Wright:
“My debut comedy show is previewing on 24/25 April as part of an Australian LGBT festival, 11am UK time. Would be great to see some of you there, there’s lots of stuff about autism. It’s about £10 I think, you can get a ticket here: https://www.midsumma.org.au/whats-on/events/harry-wright-smalltown-boy/“

Lisa Hislop’s blog

Another friend, Lisa Hislop, is an autistic book blogger and an incredible editor. Find her here: https://www.bookneurd.com/

_________________________________________________________________________________________________________________________

I’m going to finish tomorrow’s Book Club book, Convenience Store Woman by Sayaka Murata. It’s exceptional autistic fiction.

More about autistic fiction soon.

Love,

Jorik