Beautiful post in recognition of those living with rare diseases - which their can quickly become shorthand for a professional shoulder shrug.
My own child didnโt get diagnosed until adulthood - partly due to advances in genomics but largely due to professional curiosity and a willingness to listen
04.03.2026 10:02 โ
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Double Discrimination
Whilst white privilege, unconscious bias and institutional discrimination have become high profile issues, learning disabled people of colour continue to be ...
Interrupting the grim with the light: my book Double Discrimination is out 21 May๐ฝ
It's influenced by my sister Raana, it's on racism and ableism, what happens when you feel both, why that matters (to us all) - and to do about it.
Feat. awesome people & projects
www.hachette.co.uk/titles/saba-...
03.03.2026 20:12 โ
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Forgive the boasting but thatโs the 47th five star review for my book and a very nice one it is too!
03.03.2026 19:44 โ
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What's the business re Keppra rage ๐๐ก? True? False? Inbetween? Who cares about seizure control when they are feeling so depressed (or worse)? ๐
Watch ๐!
๐ฌ YouTube lnkd.in/eAhf66-2
This episode is presented in partnership with EASEEยฎEpilepsie, by PRECISIS GmbH.
#epilepsy #keppra #kepprarage
26.02.2026 08:57 โ
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So interesting and so important.
26.02.2026 09:19 โ
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This is such a well crafted and crucial piece, especially when that โsystem that confuses control with virtue and compliance with moralityโ is really perpetuated in schools from the youngest ages. Itโs so baked in.
25.02.2026 08:44 โ
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A brown glass bottle of Country Life brewery golden amber ale standing next to a glass of said ale. The label is black and turquoise with a logo of a sea bird silhouette gliding over waves in a Celtic style. It also states the ale is called Reef Break, is 4.0% ABV and is bottle conditioned.
If you are fond of an ale, I can thoroughly recommend this little beauty. A small, independent North Devon brewery too - chin chin.
22.02.2026 16:53 โ
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SAM ALTMAN: "People talk about how much energy it takes to train an Al model ... But it also takes a lot of energy to train a human. It takes like 20 years of life and all of the food you eat during that time before you get smart."
โEvil starts when you treat other people as things. There are perhaps worse crimes, but they begin when you treat other people as things.โ - Terry Pratchett
22.02.2026 08:31 โ
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If the parent does the interview, do they actually get the ยฃ150? Because thatโs more than my kiddo ever got spent on them out of the hallowed school budget
20.02.2026 08:07 โ
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She never lived to see this moment, but itโs worth remembering that none of this would have happened without Virginia Giuffre.
She had the courage to speak out against power and privilege when it was just her word against Andrewโs.
Thanks to her, justice & accountability may finally have its day.
19.02.2026 10:59 โ
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โLet me state clearly: the law must take its courseโ.
This makes me feel more patriotic than any number of bedraggled lamppost flags.
19.02.2026 12:57 โ
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AMAZING NEWS LADS! A good couple of thousand raised by this genius move by RSPCA Altrincham.
18.02.2026 08:17 โ
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Positive action: an explainer
17.02.2026 23:39 โ
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When you have a child with learning disabilities, this is the barbaric and terrifying reality that keeps you awake at night.
16.02.2026 09:18 โ
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Album cover for Erykah Baduโs โBaduizmโ
15.02.2026 09:50 โ
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Amy Reyes obituary
Other lives: Music-loving teenager who was a consummate communicator, despite the restrictions imposed on her by Rett syndrome
It's a year since my extraordinary daughter died unexpectedly. Re-sharing her obituary because it matters so much that the world understands who children w/ SEND actually are - especially right now when their right to the support they need in education is at risk. www.theguardian.com/lifeandstyle...
15.02.2026 09:04 โ
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7 small bottles (approx 2 shots) and 2 larger bottles of homemade cassis sitting on a kitchen worktop), deep purple in colour and looking highly drinkable.
New year, new home, lots and lots of change but the cassis made from our blackcurrants (gathered at our old place) has been bottled, and tonight we will raise a Kir Royale to new adventures.
06.02.2026 11:14 โ
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Should you need a bit of positivity rn๐๐พ
05.02.2026 08:47 โ
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While I figure things out, hereโs a kind of holding post.
My (now adult) kids are out the other side of the statutory Education system - a door Iโm delighted to shut.
Recently stepped into the world of the rare epilepsies and all that entails.
Still ranty and sweary, moved from a farm to the sea.
04.02.2026 19:38 โ
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Itโs a very apt description!
01.05.2025 14:12 โ
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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
01.05.2025 11:03 โ
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โBut talking about my daughter feels like the most important thing I can do. She mattered because she was here and she was exceptional.โ
What a beautiful and heartbreaking and important piece of writing this is.
30.04.2025 06:58 โ
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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.
29.04.2025 18:47 โ
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This is so beautifully written and so completely true and I agree wholeheartedly with all of it ๐ซถ๐ผ
27.04.2025 10:37 โ
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๐งต I want to tell you why I think this is one of the most important prizes running and Iโm sorry that the book press and mainstream publishing hasnโt dived on it with bells on and support โฆ
27.04.2025 06:52 โ
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Yes! For me, at least, making publishing the goal changes the purpose - I rarely get to do things just because I want to, and this offers a way to practice and learn without the focus being on โthe outcomeโ. Also, doesnโt rule out publishing for anyone who then wants to explore it later.
24.04.2025 09:12 โ
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LOVE the sound of this!
24.04.2025 08:34 โ
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"This book is both heartrending and gorgeous. It crosses the line many times but, ultimately, itโs about love. He teaches us humanity."
Miriam Margolyes
Published June 5th, available for preorder now.
18.04.2025 10:13 โ
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