Sara Upstone

Was like reading my own biography.

I keep reading that disabled people don’t need to worry about the assisted dying bill because we can trust abled bodied people to protect us.

I’d find it easier to accept if these people were wearing masks instead of allowing 100s of vulnerable people to die each week from a preventable infection.

Yes. And I am glad we had this conversation. Thank you.

Me too. Absolutely 100 per cent. I think what you describe is the death we all would want. I just can’t give myself that freedom unless I know no one will be harmed by it. And this bill does not convince me no one will be harmed.

Management of catastrophic haemorrhage in palliative head and neck cancer: creation of a new protocol using simulation Catastrophic haemorrhage or carotid blowout a rare but devastating consequence of head and neck cancer. In most cases, this represents a terminal event, and the patient is prescribed pre-emptive analg...

These events can be managed. I appreciate they are not, and that is beyond awful, but that for me is the issue.

pmc.ncbi.nlm.nih.gov/articles/PMC...

This law only helps in the handful of cases where that outcome is known months in advance. It’s a horrific death but that doesn’t make assisted dying the answer. The answer is terminal sedation which could be available to everyone without legal process. And which would not have the same risks.

With palliative care there should not be agony. Your scenario is an ideal but the reality is there will be people afraid of bad deaths they have heard about, people who are coerced, and people with disabilities or elderly who are approved for this because doctors see them as having less value.

So it won’t ease suffering for those genuinely at end of life, it will simply give terminal people not at end of life control of when they die. It’s about control not pain. And then we are back where we started! I don’t think that is a freedom I want at the possible cost of someone else’s life.

I am saying the examples used are of people at the end of life in terrible suffering, who did not get the right palliative care. But to be safe this law will be so process bound it won’t be something you can opt for at the very end. How is that not just assisted suicide?

I have struggled with this all the way through. If it’s going to be as difficult as it needs to be to be truly safe then it becomes a trauma in itself that won’t help any of those people who actually come to the end of their lives and need a painless death?

And I agree that is wrong. But feel that this law will mean the wealthy can pay to prolong their lives with private care while the poor feel like a burden and are pressured to end theirs early. You and I both want social justice.

An awful thing about death is that in the end we can’t control it? This makes the idea we could regain that control deeply attractive. But I don’t want that right for myself if it risks that someone else is coerced or acts out of fear or post-diagnosis depression.

I think we all need to listen on both sides. I am sorry for your friend’s loss and trauma. I have also cared for relatives at end of life. Palliative sedation is legal. It can prevent these situations but is not always being used appropriately. It would help a lot more people than this bill.

There are plenty of reasoned, intelligent people opposed to this bill. A lot of them are disabled, vulnerable and understand from the pandemic how little the able bodied will do to protect them. Please can we keep this a space of compassion where the vulnerable are listened to.

Because of the way the AHRC has calculated research capacity many newer institutions will get 0 scholarships under the new scheme having been entirely excluded from the landscape award scheme. Would love for someone at the AHRC to explain how that aligns with their EDI commitment.

It’s cold and I am tired. So today I find myself writing emails on a laptop sat in a four poster bed under a William Morris bedspread. This sums up the massive disjunction between the time I’d feel comfortable in and the one I am trapped in. Would anyone like me to hand write them a letter instead?

MPs may trust doctors to manage assisted dying. Disabled people like me cannot | Liz Carr Two friends recently woke up in hospital to find ‘Do not resuscitate’ orders on their notes. We’re all too aware that some lives aren’t valued as much as others, says the actor and disability rights a...

“As someone who relies on the state for my survival, I have a healthy distrust of giving it any more power over my life than it already has. Though some people want the right to die, many of us are still fighting for the right to exist.”

Must read by Liz Carr: www.theguardian.com/commentisfre...

MPs may trust doctors to manage assisted dying. Disabled people like me cannot | Liz Carr Two friends recently woke up in hospital to find ‘Do not resuscitate’ orders on their notes. We’re all too aware that some lives aren’t valued as much as others It’s a cold November evening, and MPs are no doubt snuggled up wondering what to watch on TV…

MPs may trust doctors to manage assisted dying. Disabled people like me cannot | Liz Carr

My statement on the Assisted Dying Bill.

Tim Fallon speaking today on the assisted dying bill reported that European countries without such provision spend three times as much on palliative care than those who have it. If these figures are true we have just dramatically reduced the possibility of good deaths for everyone in the UK.

Have you tried the dark chocolate orange ones? Those are my favourites. But I have to leave the packet in the cupboard or I am in trouble.

I have spent all afternoon writing about the work of Rory Pilgrim and the feeling I have right now is that if the whole world were a Rory Pilgrim art installation everything would be so much better.

A large Persian tabby cat looking grumpy, sat on a white shelf with sea themed blue and white wallpaper in the background.

If you missed my picture of Guinevere yesterday this is her brother Lancelot. He’s a bit more skeptical than his sister but today even he thinks this place is worth posting on.

1) transglossic storytelling and the response of contemporary narratives to the scale of 21st century crises
2) neurodivergent narrative ethics

Unfortunately I fear that’s their best selves.

She may look skeptical but Guinevere likes it here.

Thanks Alex that is very kind. Looking forward to some good conversations.

Thanks Caroline. Excited to be part of a new conversation and amongst friends. Hope all is well for you also.

Just arrived from the other place. On the platform, looking for literary, creative writing and critical theory friends. I am a bit shy so if that’s you then please follow me and I’ll follow back.