I've so many thoughts about the culture of celebrity and its impact on shaming government into action. I've stayed silent until now, not sure what my voices adds.
My skin itches and my heart aches when I hear some of the language used to describe learning disabled people
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My skin itches and my heart aches when I hear some of the language used to describe learning disabled people
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Language that is littered through healthcare and society at large, the othering implicit in describing someone's distress. It's hard to hear some of these words from a @mencap_charity ambassador.
But simultaneously you can feel the love, the very real love behind the words
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But simultaneously you can feel the love, the very real love behind the words
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I'm left with some questions.
Why do healthcare professionals jump so quickly to discussing palliative care for some patients, when I've at times literally had to drag that discussion out of them, with my Dad's oncologist, as one example?
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Why do healthcare professionals jump so quickly to discussing palliative care for some patients, when I've at times literally had to drag that discussion out of them, with my Dad's oncologist, as one example?
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How can it be, an entire year into a pandemic a celebrity is tweeting for answers about how to help administer oxygen to someone in distress?
Why haven't Mencap already produced resources and guides and shared with their ambassadors?
What have they been doing?
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Why haven't Mencap already produced resources and guides and shared with their ambassadors?
What have they been doing?
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Why in the reporting of the need for learning disabled people to be vaccinated have the media failed to acknowledge the work of self-advocacy groups and campaigners that have been raising concerns about this for months now?
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You can see a snapshot of the work being done by a range of self advocacy groups, and the information provided, on the @InclusionNorth site here inclusionnorth.org/our_work/coron…
Lots of voices raised concerns about the risk being exposed to learning disabled and autistic people
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Lots of voices raised concerns about the risk being exposed to learning disabled and autistic people
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#EveryDeathCounts saw 240 ppl help us issue judicial review proceedings because government were failing to count/report the deaths of learning disabled and autistic people.
Where were the large national charities? What action did they take?
I count vimeo.com/417147010
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Where were the large national charities? What action did they take?
I count vimeo.com/417147010
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The legend that is @chrishattoncedr has written blog posts and threads galore, somehow managing to make sense of murky and confusing data
You can read Chris's blogs chrishatton.blogspot.com
Many family members eg @RoseUnwin and @Saba_Salman have shared their experiences
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You can read Chris's blogs chrishatton.blogspot.com
Many family members eg @RoseUnwin and @Saba_Salman have shared their experiences
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Helpful as the celebrity input was, we all stand on the shoulders of giants.
Which brings me back to where I wanted to go in this thread. Over last 4 or 5 months I've had the absolute pleasure of working with the Stop People with a Learning Disability Dying Too Young Group
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Which brings me back to where I wanted to go in this thread. Over last 4 or 5 months I've had the absolute pleasure of working with the Stop People with a Learning Disability Dying Too Young Group
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This group of kick arse campaigners have been working together for years, chipping away at societal apathy. They are passionate, committed, knowledgeable and one of the kindest groups of people I've ever met.
Their response to 2020 Leder report
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Their response to 2020 Leder report
https://twitter.com/InclusionNorth/status/1291303437666340864
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Over the last few months we've been working together to develop some Easy Read Resources that talk about coroners and inquests and ask why the deaths of learning disabled people aren't reported to the coroner as often as others.
We're launching them today at 12:30, on zoom.
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We're launching them today at 12:30, on zoom.
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DM me for the link if you'd like to join us.
The group will talk about the work we've been doing, we'll play the video guides, and then have a Q&A session.
We shared a press release yesterday, so far interest has wanted us to talk abut the vaccine
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The group will talk about the work we've been doing, we'll play the video guides, and then have a Q&A session.
We shared a press release yesterday, so far interest has wanted us to talk abut the vaccine
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This work isn't about the vaccine. Or about covid per se. It's about a far more pervasive societal apathy to the lives, and deaths, of learning disabled people.
We focus on inquests and coroners, because deaths don't get scrutinised properly
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We focus on inquests and coroners, because deaths don't get scrutinised properly
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The resources aim to help others understand the confusion that is the coronial service.
"demystifying coroners and inquests, and challenging the inequality in the numbers of deaths reported to a coroner is sadly, very timely and absolutely necessary" Karen @InclusionNorth
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"demystifying coroners and inquests, and challenging the inequality in the numbers of deaths reported to a coroner is sadly, very timely and absolutely necessary" Karen @InclusionNorth
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"This is such a fantastic resource making a confusing and complex coronial system more accessible and helping people understand their rights. Inquests can play an important role in shining a light on the deaths of people with a learning disability" @DebatINQUEST
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"We must hope that greater awareness of these lives and premature deaths can lead to a change both in culture and practice in coroners court and society”. Deb from @INQUEST_ORG
You're welcome to join us if you're free and would like to hear from the group 👊
/END
You're welcome to join us if you're free and would like to hear from the group 👊
/END
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