Thread. It is a great honour to announce the shortlist for the 2025 #Curae prize for unpaid carers POETRY CATEGORY Mistletoe. Sam Garvan Diagnosis. Elizabeth Loudon Sinkhole. Charlotte Ansell I Love Him (like salt and water). Emma Wilson The Shop at the End of a Wave. Ia Kozoboli. thecuraeprize.uk

“But talking about my daughter feels like the most important thing I can do. She mattered because she was here and she was exceptional.” What a beautiful and heartbreaking and important piece of writing this is.

This is a new image from #JWST. The bright points with spikes are stars in the Milky Way. Everything else is a galaxy. Everything. Else. Is. A. Galaxy.

🧵 I want to tell you why I think this is one of the most important prizes running and I’m sorry that the book press and mainstream publishing hasn’t dived on it with bells on and support …

"This book is both heartrending and gorgeous. It crosses the line many times but, ultimately, it’s about love. He teaches us humanity." Miriam Margolyes Published June 5th, available for preorder now.

On SNJ Today: Our post today remembers “fierce, funny and fabulous” Amy Reyes, the daughter of our columnist, @catrionamoore.bsky.social & @edreyesjourno.bsky.social whose funeral was today. You can donate to Amy’s hospice #DemelzaCharity at the link in the post. www.specialneedsjungle.com/r...

It’s a very easy to use and well composed template. Collective action is all we have right now folks 💜

Chilli germinating season is upon us 🌶️ 😁

Every journo who bangs on about the ease of falsely obtaining PIP: go on then.

In preparation for ‘I Open My Own Front Door, Do You?’ launched today, I asked people to share what ‘front door’ means to them. The blog is about what people told me - beautiful, heartfelt, thoughtful quotes. www.gloriouslyordinarylives.co.uk/gloriously-o... @learningdiseng.bsky.social

For #RareDiseaseDay, here's a series of posts I wrote a while ago about how #FragileX Syndrome affects our family. #FragileX is a chromosomal abnormality & is the most common form of inherited learning disability. It's called Fragile X as the end of the chromosome looks like it's about to drop off.

Such cruelty at the hands of the system #carers www.theguardian.com/society/2025...

As well as showing deep systemic failures, this piece is so devastating and terrifying to me as the parent and full time carer for an adult child with epilepsy. The sheer lack of understanding outside of specialist services is truly unacceptable. What a heartbreaking and needless loss of life.

Why is it important that #Curae exists?

I have many pieces of @beckyrwhin.bsky.social beautiful artwork and would encourage everyone to take a look through her back catalogue as she captures the essence of things in a remarkable way.

Meet Blossom and his harem: Blossom is the giant and flamboyant cockerel, named by my mum when still an unhatched egg in our incubator (it’s a tradition). Honestly, the most inappropriate name for that brute, but here we are.

#curae - It matters. It REALLY matters. Shining a light changes lives and makes community - no not me; the brilliant people who enter do all that - and it is the ONLY national initiative for unpaid carers in this area. It’s also unfunded by Arts organisations. Still. Two weeks left to enter! 💙📚

Make no mistake, the detention of people with learning disabilities in secure hospitals is a HR issue. There will be more claims and settlements. www.doughtystreet.co.uk/news/justice...

This makes for a difficult listen but is so important, the brilliant @ellychapple.bsky.social and myself on The Skies We're Under podcast talking about Ella's human rights claim and the impact of unlawful care proceedings on their family open.spotify.com/episode/2rRf...

So it’s Feeding Tube Awareness Week - an opportunity to shed light on a topic that is personal to me. My children are tube fed and there are many misconceptions about it. Please read my eldest’s perspective. helen2tubies.wordpress.com/2022/10/29/a...

It's not easy being in Government right......

Very brilliant that @cmic-uk.bsky.social just got the go ahead to create a training microbrewery for adults with learning disabilities, so here's a reminder of @beckyrwhin.bsky.social's words in @communitylivingmagazine.com a year ago. #LearningDisability communitylivingmagazine.com/there-was-a-...

I am a massive supporter of Count Me In Collective @cmic-uk.bsky.social - and this is fantastic news! Cant wait to sample that first beer! www.bbc.co.uk/news/article...

📢Launched today: The Gender Pain Gap consultation on Pain in Sexual & Reproductive Health Procedures (UK). Aim: To understand experiences, priorities & views of people with experience of painful procedures. openeducation.eu.qualtrics.com/jfe/form/SV_... Open to 31 Jan. Please share widely!

NEW POST: The Commons Public Accounts Committee #SEND report warns of a "lost generation" of children. But SNJ's @captaink77.bsky.social finds warnings all a bit pointless when decision-makers don’t know what they value more—money or children’s futures... www.specialneedsjungle.com/p...

Began the year with a bout of hMPV which utterly floored me so I am officially starting 2025 today. Happy new year, one and all.

This is so important. And so awful. It is a catalogue of abuses of power at every level and it is unconscionable that all of those involved are the very people who are supposed to help.

You know that thing where you’re in London and you need to get home to Devon and you booked your tickets many months ago and then pretty much every single train going westward is cancelled and you’re the full time carer for your child so you have to get at least closer to home? SUCH FUN!

This response from @sbearbergman.bsky.social to @hildur.bsky.social’s post has changed my week— it is so wholesome, and human, and so the energy we all need right now. And Kerstin Langenberger, the naturalist who posted “I am on my way with the necessary equipment”? This woman is the hero we need.

| International Human Rights Day | - Scott Watkin BEM

Nothing like a 20 hour power cut to make you realise a few things.

If you’re applying for PIP, the charity Turn2Us has launched The PIP Tool: a free guide to navigate the benefits process. Their goal “is to make sure you know your rights and can afford what you need to enjoy life fully.” Share widely! pip.turn2us.org.uk

Morning #BlueSky. Ella and I would be really grateful if you might take a moment to watch and share our #TEDx talk. 'It does not matter what package you arrived in. Everyone needs a seat at the table' Please help us #FlipTheNarrative for all of our fellow humans 💜🙏 www.ted.com/talks/elly_c...

There’s are so many wrongs and harms that were committed here, but something that is rarely captured is the ferocity with which ‘services’ attempt to shut families down and the courage and tenacity it takes to challenge that. Huge love and gratitude to @ellychapple.bsky.social

It feels very much like starting again on here. If you happen to know people you KNOW enjoy the Irish Sunrise, help them find me & vice versa? ☺️

It’s that time of year again; my favourite existential elf is back!

"As we approach the vote on assisted dying this week, I’ve been struck by how arguments in favour have held to very white, Western concepts of what it is to be human." Got a few things off my chest about race and #AssistedDying @theosthinktank.bsky.social www.theosthinktank.co.uk/comment/2024...

While I figure things out, here’s a kind of holding post. My (now adult) kids are out the other side of the statutory Education system - a door I’m delighted to shut. Recently stepped into the world of the rare epilepsies and all that entails. Still ranty and sweary and living on a farm.