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#UnheardVoices

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Why do so many people with autism die young?

This is a newsroom ThinkIn. In-person and digital only tickets are available.  Autistic adults with a learning disability are 40 times more likely to die prematurely (most commonly from epilepsy), and 9 times more likely to die from suicide. The UK’s largest study yet into the condition, the Spectrum 10k study, is gathering data to investigate why conditions like epilepsy are most common in people with autism, and to explore ways to improve their wellbeing. But autistic adults are calling for the study to be halted, fearing it could lead to a ‘screening’ test, as is commonly offered to pregnant women for Down’s Syndrome. Public awareness of issues relating to neurodiversity in general has improved in recent years, but has all that awareness translated into meaningful change, especially in terms of medical treatment, for autistic people and their families?           Illustration: Charlotte Ager   editor and invited experts Liz MoseleyMembers’ Editor James CusackChief Executive, Autistica Jolanta LasotaChief Executive Officer, Ambitious About Autism Marie Van HerteryckSelf-Advocate and Co-Founder of Neuro Diverse Self Advocacy (NDSA)

thinkin

How to break down stereotypes with actor Samantha Renke

Social homes are provided by councils or housing associations and are more affordable than renting privately. They’re also supposed to be more secure, long term places to live for people who are vulnerable or on low incomes – so they’re in high demand. But successive governments have failed to invest in social housing, which means not enough new properties are being built to meet that demand and existing ones are falling apart. All of that we knew at the start of the year. But Kwajo Tweneboa has helped reveal just how badly some are falling apart and how people are being treated when they complain about the conditions they have to live in.      Kwajo is in his early twenties.  Just a couple of years ago he lived in a dreadful housing association flat in south London with his two sisters and their terminally ill father: “So I moved here a few years ago with my dad, around 2018. When we moved in he was just so happy that we had a place, but it had mice, cockroaches, damp, mould, kitchen falling apart.”Kwajo Tweneboa speaking to the Guardian Despite repeatedly complaining to the housing association for more than a year, nothing was done. So Kwajo tried something different: he posted pictures of the mould and the damp and the cockroaches online.  It was a last ditch attempt after years of being ignored. What he didn’t expect was for the photographs to strike a chord with thousands of people stuck in similar conditions. In just a matter of hours, hundreds of people had commented on his post with stories of their own. They attached pictures of mushrooms growing out of the cracks in their walls, cockroaches crawling over packets of food in the kitchen, and their children’s clothes covered in green mould.  And there was a response from the housing association too. It repaired Kwajo’s flat. “When you publicly disgrace them and nationally disgrace them they seem to work and put things that they’re able to then complete works and prioritise tenants all of a sudden.”Kwajo Teneboa on Good Morning Britain The response he got from people in similar situations shocked Kwajo into action. “I’ve fallen into the role of becoming a housing campaigner and now I do that for other people and other tenants across the country.”Kwajo Teneboa in Channel 4 documentary Since then, Kwajo’s spent the year going to hundreds of homes up and down the country to try to help people who are also being ignored. He visited Jayvon, whose flat was flooded with raw sewage. Kwajo had to walk through the property with carrier bags on his feet…  He visited Tracy, whose home was infested with mice… “We’ve had mice for more than 10 years now. To me it sounds like a living nightmare… It makes you feel as if you’re completely unimportant.”Channel 4 documentary And he described a visit to a home which had a cockroach infestation… “She often finds them burrowed in their ears in the morning and had to have a few removed. I mean it’s absolutely slum conditions that no one should be allowed to live in.”Kwajo Teneboa on Sky News Kwajo now has 69,000 followers on Twitter. When he posts videos he gets results. Homes are finally repaired. The people with the power to do something are finally paying attention. Whilst the conditions that Kwajo documents shock many people, they’ll be all too familiar to the hundreds of thousands of people in a similar situation.   This year it was ruled that a two-year-old boy called Awaab Ishak died as a result of exposure to the mould in his own home… “Awaab Ishak died after suffering a cardiac arrest brought on by a severe respiratory condition with one pathologist stating that fungus was found in both his blood and lungs.”GBNews Awaab’s death and Kwajo’s campaigning tell a similar story of social housing in disrepair and people being ignored or dismissed when they complain about it.  People message Kwajo because they have tried and failed to get help from their landlords. For them, he is their last resort.  Like Sarah, who lives in a house riddled with mould:  “They don’t treat you with no dignity, going back and forth and it’s always you when you complaining you’re the problem.”Channel 4 documentary It’s thought that around 90,000 people are currently living in below-standard social housing, so Kwajo Tweneboa has exposed a huge problem in the sector. Here he is speaking after the inquest into Awaab Ishak’s death. “If it was any other sector, if this was the NHS for example and it was a doctor or nurse who had neglected their patient in this way and it resulted in a death, not only would they be struck off, there would be criminal charges. We need to see the same in housing too.”  Sky News When he was housing secretary, Michael Gove agreed with Kwajo Tweneboa that things need to change.  The government has put forward legislation to improve conditions in the housing market. The Renters Reform Bill would give tenants more powers to challenge poor practice and would raise the minimum legal standard for properties in the private sector. But it’s been delayed again and again since 2019.  Kwajo Tweneboa has pushed it back up the political agenda and has vowed to “take on absolutely anyone” in his fight for justice. This episode was written and mixed by Rebecca Moore.

thinkin

A ThinkIn for International Women’s Day with Gayle Smith, Nimco Ali and Mandu Reid

This International Women’s Day, and every day, 33,000 girls will become child brides and millions more will remain trapped in poverty, denied the political power to fulfil their potential. According to the World Economic Forum, it will take another 99.5 years to achieve global gender equality. Progress is far too slow. We need new and radical solutions. But what are they, and who will make them happen? To tackle this injustice, it is time to think the unthinkable. Our special guests include: Mandu Reid, Leader of the UK Women’s Equality PartyNimco Ali, Founder, The Five FoundationGayle Smith, CEO, ONE Campaign Chair: Liz Moseley, Members’ Editor and Partner, Tortoise The full title of this ThinkIn is: A ThinkIn for International Women’s Day with the ONE Campaign, Nimco Ali and Mandu Reid – How can we finally achieve global gender equality? What is a Tortoise ThinkIn? A ThinkIn is not another panel discussion. It is a forum for civilised disagreement. Modelled on what we call a ‘leader conference’ in the UK (or an editorial board in the US), it is a place where everyone has a seat at the table. It’s where we get to hear what you think, drawn from your experience, energy and expertise. It’s where, together, we sift through what we know to come to a clear, concise point of view. It is the heart of what we do at Tortoise. Breakfast from 07.45am, starts promptly at 8am. If you are late to a ThinkIn you can ‘SlinkIn’! If you would like to contribute to this ThinkIn, let us know by emailing thinkin@tortoisemedia.com We film our ThinkIns so we can watch them back, edit the best bits and share them with members who weren’t there in person. Members can find their ThinkIn booking code in My Tortoise, under My Membership. How we work with partners We want to be open about the business model of our journalism, too. At Tortoise, we don’t take ads. We don’t want to chase eyeballs or sell data. We don’t want to add to the clutter of life with ever more invasive ads. We think that ads force newsrooms to produce more and more stories, more and more quickly. We want to do less, better. Our journalism is funded by our members and our partners. We are establishing Founding Partnerships with a small group of businesses willing to back a new form of journalism, enable the public debate, share their expertise and communicate their point of view. Those companies, of course, know that we are a journalistic enterprise. Our independence is non-negotiable. If we ever have to choose between the relationship and the story, we’ll always choose the story. We value the support that those partners give us to deliver original reporting, patient investigations and considered analysis. We believe in opening up journalism so we can examine issues and develop ideas for the 21st Century. We want to do this with our members and with our partners. We want to give everyone a seat at the table.

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thinkin

Why do so many people with autism die young?

This is a newsroom ThinkIn. In-person and digital only tickets are available.  Autistic adults with a learning disability are 40 times more likely to die prematurely (most commonly from epilepsy), and 9 times more likely to die from suicide. The UK’s largest study yet into the condition, the Spectrum 10k study, is gathering data to investigate why conditions like epilepsy are most common in people with autism, and to explore ways to improve their wellbeing. But autistic adults are calling for the study to be halted, fearing it could lead to a ‘screening’ test, as is commonly offered to pregnant women for Down’s Syndrome. Public awareness of issues relating to neurodiversity in general has improved in recent years, but has all that awareness translated into meaningful change, especially in terms of medical treatment, for autistic people and their families?           Illustration: Charlotte Ager   editor and invited experts Liz MoseleyMembers’ Editor James CusackChief Executive, Autistica Jolanta LasotaChief Executive Officer, Ambitious About Autism Marie Van HerteryckSelf-Advocate and Co-Founder of Neuro Diverse Self Advocacy (NDSA)

thinkin

How to break down stereotypes with actor Samantha Renke

Social homes are provided by councils or housing associations and are more affordable than renting privately. They’re also supposed to be more secure, long term places to live for people who are vulnerable or on low incomes – so they’re in high demand. But successive governments have failed to invest in social housing, which means not enough new properties are being built to meet that demand and existing ones are falling apart. All of that we knew at the start of the year. But Kwajo Tweneboa has helped reveal just how badly some are falling apart and how people are being treated when they complain about the conditions they have to live in.      Kwajo is in his early twenties.  Just a couple of years ago he lived in a dreadful housing association flat in south London with his two sisters and their terminally ill father: “So I moved here a few years ago with my dad, around 2018. When we moved in he was just so happy that we had a place, but it had mice, cockroaches, damp, mould, kitchen falling apart.”Kwajo Tweneboa speaking to the Guardian Despite repeatedly complaining to the housing association for more than a year, nothing was done. So Kwajo tried something different: he posted pictures of the mould and the damp and the cockroaches online.  It was a last ditch attempt after years of being ignored. What he didn’t expect was for the photographs to strike a chord with thousands of people stuck in similar conditions. In just a matter of hours, hundreds of people had commented on his post with stories of their own. They attached pictures of mushrooms growing out of the cracks in their walls, cockroaches crawling over packets of food in the kitchen, and their children’s clothes covered in green mould.  And there was a response from the housing association too. It repaired Kwajo’s flat. “When you publicly disgrace them and nationally disgrace them they seem to work and put things that they’re able to then complete works and prioritise tenants all of a sudden.”Kwajo Teneboa on Good Morning Britain The response he got from people in similar situations shocked Kwajo into action. “I’ve fallen into the role of becoming a housing campaigner and now I do that for other people and other tenants across the country.”Kwajo Teneboa in Channel 4 documentary Since then, Kwajo’s spent the year going to hundreds of homes up and down the country to try to help people who are also being ignored. He visited Jayvon, whose flat was flooded with raw sewage. Kwajo had to walk through the property with carrier bags on his feet…  He visited Tracy, whose home was infested with mice… “We’ve had mice for more than 10 years now. To me it sounds like a living nightmare… It makes you feel as if you’re completely unimportant.”Channel 4 documentary And he described a visit to a home which had a cockroach infestation… “She often finds them burrowed in their ears in the morning and had to have a few removed. I mean it’s absolutely slum conditions that no one should be allowed to live in.”Kwajo Teneboa on Sky News Kwajo now has 69,000 followers on Twitter. When he posts videos he gets results. Homes are finally repaired. The people with the power to do something are finally paying attention. Whilst the conditions that Kwajo documents shock many people, they’ll be all too familiar to the hundreds of thousands of people in a similar situation.   This year it was ruled that a two-year-old boy called Awaab Ishak died as a result of exposure to the mould in his own home… “Awaab Ishak died after suffering a cardiac arrest brought on by a severe respiratory condition with one pathologist stating that fungus was found in both his blood and lungs.”GBNews Awaab’s death and Kwajo’s campaigning tell a similar story of social housing in disrepair and people being ignored or dismissed when they complain about it.  People message Kwajo because they have tried and failed to get help from their landlords. For them, he is their last resort.  Like Sarah, who lives in a house riddled with mould:  “They don’t treat you with no dignity, going back and forth and it’s always you when you complaining you’re the problem.”Channel 4 documentary It’s thought that around 90,000 people are currently living in below-standard social housing, so Kwajo Tweneboa has exposed a huge problem in the sector. Here he is speaking after the inquest into Awaab Ishak’s death. “If it was any other sector, if this was the NHS for example and it was a doctor or nurse who had neglected their patient in this way and it resulted in a death, not only would they be struck off, there would be criminal charges. We need to see the same in housing too.”  Sky News When he was housing secretary, Michael Gove agreed with Kwajo Tweneboa that things need to change.  The government has put forward legislation to improve conditions in the housing market. The Renters Reform Bill would give tenants more powers to challenge poor practice and would raise the minimum legal standard for properties in the private sector. But it’s been delayed again and again since 2019.  Kwajo Tweneboa has pushed it back up the political agenda and has vowed to “take on absolutely anyone” in his fight for justice. This episode was written and mixed by Rebecca Moore.

thinkin

A ThinkIn for International Women’s Day with Gayle Smith, Nimco Ali and Mandu Reid

This International Women’s Day, and every day, 33,000 girls will become child brides and millions more will remain trapped in poverty, denied the political power to fulfil their potential. According to the World Economic Forum, it will take another 99.5 years to achieve global gender equality. Progress is far too slow. We need new and radical solutions. But what are they, and who will make them happen? To tackle this injustice, it is time to think the unthinkable. Our special guests include: Mandu Reid, Leader of the UK Women’s Equality PartyNimco Ali, Founder, The Five FoundationGayle Smith, CEO, ONE Campaign Chair: Liz Moseley, Members’ Editor and Partner, Tortoise The full title of this ThinkIn is: A ThinkIn for International Women’s Day with the ONE Campaign, Nimco Ali and Mandu Reid – How can we finally achieve global gender equality? What is a Tortoise ThinkIn? A ThinkIn is not another panel discussion. It is a forum for civilised disagreement. Modelled on what we call a ‘leader conference’ in the UK (or an editorial board in the US), it is a place where everyone has a seat at the table. It’s where we get to hear what you think, drawn from your experience, energy and expertise. It’s where, together, we sift through what we know to come to a clear, concise point of view. It is the heart of what we do at Tortoise. Breakfast from 07.45am, starts promptly at 8am. If you are late to a ThinkIn you can ‘SlinkIn’! If you would like to contribute to this ThinkIn, let us know by emailing thinkin@tortoisemedia.com We film our ThinkIns so we can watch them back, edit the best bits and share them with members who weren’t there in person. Members can find their ThinkIn booking code in My Tortoise, under My Membership. How we work with partners We want to be open about the business model of our journalism, too. At Tortoise, we don’t take ads. We don’t want to chase eyeballs or sell data. We don’t want to add to the clutter of life with ever more invasive ads. We think that ads force newsrooms to produce more and more stories, more and more quickly. We want to do less, better. Our journalism is funded by our members and our partners. We are establishing Founding Partnerships with a small group of businesses willing to back a new form of journalism, enable the public debate, share their expertise and communicate their point of view. Those companies, of course, know that we are a journalistic enterprise. Our independence is non-negotiable. If we ever have to choose between the relationship and the story, we’ll always choose the story. We value the support that those partners give us to deliver original reporting, patient investigations and considered analysis. We believe in opening up journalism so we can examine issues and develop ideas for the 21st Century. We want to do this with our members and with our partners. We want to give everyone a seat at the table.

thinkin

Why don't we talk about miscarriage?

Around one in four recognised pregnancies miscarry. That’s tens of thousands of women experiencing loss, pain and grief every year. Yet the unwritten rule not to tell friends and family you’re pregnant until you’ve hit the 12 week mark “just in case”, attaches a stigma and secrecy to losing a pregnancy. Why is having a miscarriage a forbidden grief? And how can society, and the healthcare system, be more supportive towards all the women who think they are alone? Our special guests include: Julia Bueno, Psychotherapist and Counseller Natasha Necati, Trustee of Miscarriage Association Tom Bourne, Professor at Imperial College London and Consultant Gynaecologist  Chair: Polly Curtis, Editor and Partner, Tortoise What is a Tortoise ThinkIn? A ThinkIn is not another panel discussion. It is a forum for civilised disagreement. Modelled on what we call a ‘leader conference’ in the UK (or an editorial board in the US), it is a place where everyone has a seat at the table. It’s where we get to hear what you think, drawn from your experience, energy and expertise. It’s where, together, we sift through what we know to come to a clear, concise point of view. It is the heart of what we do at Tortoise. Drinks from 6.00pm, starts promptly at 6.30pm. If you are late to a ThinkIn you can ‘SlinkIn’! If you would like to contribute to this ThinkIn, let us know by emailing thinkin@tortoisemedia.com We film our Thinkins so we can watch them back, edit the best bits and share them with members who weren’t there in person. Members can find their ThinkIn booking code in My Tortoise, under My Membership.