tag:blogger.com,1999:blog-21485181853778217002024-03-13T07:53:17.175-07:00Down's with the kidsUnknownnoreply@blogger.comBlogger120125tag:blogger.com,1999:blog-2148518185377821700.post-76863286877528212542021-03-18T03:19:00.000-07:002021-03-18T03:19:09.381-07:00The book, the audiobook, the podcast & the newsletter <span face=""arial" , "helvetica" , sans-serif" style="font-size: large;">Down's with the kids - <span style="color: orange;"><a href="https://www.amazon.co.uk/Downs-kids-Stanley-Matthew-Palmer-ebook/dp/B00O8OHKRK/ref=sr_1_2?ie=UTF8&qid=1412758452&sr=8-2&keywords=down%27s+with+the+kids"><span style="color: orange;">The book</span></a> / <a href="http://www.audible.co.uk/pd/Biographies-Memoirs/Downs-With-the-Kids-Audiobook/B00RBUUMFU/ref=a_search_c4_1_1_srTtl/275-6886987-8299536?qid=1424792896&sr=1-1"><span style="color: orange;">Audiobook</span></a> / <a href="https://soundcloud.com/user-646683117"><span style="color: orange;">The podcast</span></a></span></span><br />
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<a href="https://open.spotify.com/show/1BVVFpHSmpxyHP5K8yN23U" target="_blank"><span face=""arial" , "helvetica" , sans-serif" style="color: orange; font-size: large;">Listen to the podcast on Spotify</span></a><br />
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<span face=""arial" , "helvetica" , sans-serif" style="font-size: large;"><span style="color: orange;"><a href="mailto:palmersteve@gmail.com" target="_blank">Subscribe to a weekly quirky learning disability newsletter</a></span></span><br />
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<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-2148518185377821700.post-1782541350467881682021-03-18T03:18:00.007-07:002021-04-09T05:26:45.395-07:00Covid blogs<p><span style="font-family: arial; font-size: large;">Down's Dad's pandemic blogs - Two hosted by the Local Government Information Unit and one by The Ideas Alliance:</span></p><p><a href="https://ideas-alliance.org.uk/hub/2020/05/12/staying-up-late-is-put-on-hold-autism-and-learning-disability-during-lockdown/"><span style="font-size: large;">12 May 2020: Staying up late is put on hold. Autism and learning disability during lockdown >>></span></a></p><p><span style="font-family: arial; font-size: large;"><a href="https://lgiu.org/a-fraud-in-a-hawaiian-shirt/">8 June 2020: A fraud in a Hawaiian shirt? >>></a></span></p><p><a href="https://lgiu.org/jo-whiley-the-marcus-rashford-of-the-learning-disability-world/"><span style="font-family: arial; font-size: large;">17 March 2021: Jo Whiley: The Marcus Rashford of the learning disability world >>></span></a></p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-10094191611541348242020-04-03T03:50:00.000-07:002020-04-20T01:38:15.498-07:00Coronavirus COVID-19 support for learning disabilities and autism<a href="https://www.mencap.org.uk/advice-and-support/health/coronavirus-covid-19" target="_blank"><span style="color: orange; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Mencap: Easy read advice</span></a><br />
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<a href="https://www.autism.org.uk/get-involved/media-centre/news/2020-03-20-coronavirus-new-announcement-social-care-funding.aspx" target="_blank"><span style="color: orange; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Advice from the National Autistic Society</span></a></span><br />
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<span style="color: orange; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Down's Syndrome Association: Easy read advice</span></a></span><br />
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<span style="color: orange; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><a href="https://www.ndss.org/coronavirus-covid-19/" target="_blank"><span style="color: orange;">Graphic from USA's National Down Syndrome Society</span></a></span><br />
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<span style="color: orange; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><a href="https://www.lumindidsc.org/qa-on-covid-19-and-down-syndrome-2/" target="_blank"><span style="color: orange;">Questions and answers: From various USA Down Syndrome groups</span></a></span><br />
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<span style="color: orange; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><a href="https://www.scie.org.uk/care-providers/coronavirus-covid-19/learning-disabilities-autism" target="_blank"><span style="color: orange;">Social Care Institute for Excellence COVID-19: Supporting autistic people and people with learning disabilities</span></a></span><br />
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<a href="https://www.youtube.com/watch?v=4eY59qr2FTo" target="_blank"><span style="color: orange; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">The hand-washing rap from the Purple All Stars </span></a></span><br />
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<a href="https://www.scie.org.uk/care-providers/coronavirus-covid-19/blogs/covid-older-carer" target="_blank"><span style="color: orange; font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Dame Philippa Russell blog: An older person caring for a younger family member</span></a></span><br />
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<span style="color: orange; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><a href="https://www.scie.org.uk/care-providers/coronavirus-covid-19" target="_blank"><span style="color: orange;">COVID-19 advice for social care</span></a></span><br />
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<span style="color: orange; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><a href="http://sharedlivesplus.org.uk/wp-content/uploads/2020/03/Shared-Lives-Plus-Coronavirus-COVID-19-guidance-17-March-2020.pdf" target="_blank"><span style="color: orange;">Guidance for Shared Lives carers and schemes</span></a></span><br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-9607207224929573022018-04-20T07:29:00.001-07:002019-05-19T10:25:06.415-07:00'That's my boss'. A powerful moment<div style="background-color: white;">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">'That's my boss'. </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">The words of Sarah Merriman, who has a job in a Central London hotel, commutes to work on her own, has a boyfriend and oh yes, has Down's Syndrome. </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Andy and Sarah Merriman at the book launch </span></td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Andy's first book about Sarah (A Minor Adjustment) was written in 1999 and now Andy, Sarah and other members of the family have written 'part two'. This one's called <span style="color: orange;"><a data-saferedirecturl="https://www.google.com/url?hl=en-GB&q=https://www.amazon.co.uk/Major-Adjustment-Remarkable-Child-Became/dp/0993291147/ref%3Dsr_1_1&source=gmail&ust=1524319856768000&usg=AFQjCNFjZ4eDgzIAIkXNYcB8k03ijbhpIA" href="https://www.amazon.co.uk/Major-Adjustment-Remarkable-Child-Became/dp/0993291147/ref=sr_1_1" style="color: #1155cc;" target="_blank"><span style="color: orange;">A Major Adjustment</span></a>. </span>The book launch was last month.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Sarah wants to work and contribute to society. </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I can't stop thinking of that sentence: 'That's my boss'. In sixteen years of Down's Syndrome advocacy it's the most powerful and positive thing I've heard. Too often, people like my Stan are referred to as 'heartwarming' - with the assumption that smiling and looking cute is all they need to do to have achieved something. But Andy and I want so much more for our offspring. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>Tears are not enough </b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And then I blotted my copybook. I introduced myself to Sarah's boss, who's called Sandor, shook his hand and told him what a powerful moment it was that she was holding the book launch in her workplace. And then, </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">rather less powerfully, I burst into tears in front of Sandor. And hugged him. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">But they were tears of relief. Not everyone with Down's is going to get a job or commute on their own, but they all have ambitions and aspirations. I know that Andy's very keen to point out that it's about providing opportunities; let's see what we can all do to support people to fulfil those aspirations. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Just like Sarah has. </span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-88338204445268715032018-04-11T02:03:00.000-07:002018-04-29T12:10:39.416-07:00Approaching Jesus: not heartwarming. More 'Massive emotional intelligence'<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-7--NnWHo9d4/Ws3OjL08INI/AAAAAAAAM8U/DSClmYk42Q44hVvu6G2TQP_JmvGbORBAQCLcBGAs/s1600/1234-700x438.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><img border="0" data-original-height="438" data-original-width="700" height="200" src="https://4.bp.blogspot.com/-7--NnWHo9d4/Ws3OjL08INI/AAAAAAAAM8U/DSClmYk42Q44hVvu6G2TQP_JmvGbORBAQCLcBGAs/s320/1234-700x438.jpg" width="320" /></span></a></div>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I’m nervous writing about this. Not because it’s not a great and positive story, but because of the way people have reacted and may react. Here’s what happened:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">An Easter procession in Mexico saw a young man with Down’s, Juan Pablo, approach an actor playing Jesus. Juan was drawn to the actor because he was walking with head down, appearing upset. He then comforted the actor. <a href="https://churchpop.com/2018/04/04/boy-with-down-syndrome-comforts-jesus-during-way-of-the-cross-in-viral-video/"><span style="color: orange;">The news story is here</span></a>. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I’m nervous about talking about this because some will see Juan Pablo’s activity as being the result of his ‘mental age’ or lack of capacity to understand. Some have commented that it’s ‘heartwarming’.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">But I reject all the above. My Stan would do just the same and I think it reveals something that typically-developed adults don’t always show: massive levels of emotional intelligence. Would you see someone in distress and then take it upon yourself to ignore social norms and go and comfort them? Stan does this all the time. If someone’s upset he pushes everyone else out of the room and becomes the shoulder to cry on.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So I’m making a plea for people not to jump to conclusions about why someone, packing an extra chromosome, might approach a sad-looking person and attempt to help them.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">In the comments after the article people do say they find it beautiful and heartwarming but I am much more interested in the person who describes the action as 'courageous compassion'. Once again people with Down's show us that their lives are more complex than many think they are - and that's certainly my lived experience.</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-237276534302020682018-02-19T07:47:00.001-08:002018-02-19T09:14:08.263-08:00The Pope is groovy. Religion and Down's Syndrome <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Religious leaders seem to be falling over themselves to be relaxed and groovy about Down's Syndrome. First you had the General Synod <a href="https://www.theguardian.com/world/2018/feb/10/c-of-e-backs-motion-valuing-people-with-downs-syndrome"><span style="color: red;">discussing testing in pregnancy.</span> </a>It backed a motion calling on the government to ensure that parents who have been told their unborn child has Down’s syndrome will be given 'comprehensive, unbiased information' regarding the condition.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I was asked to comment on all of this and did so on <a href="https://www.youtube.com/watch?v=8yoEIt52oIU"><span style="color: red;">Radio 5 Live</span></a>. And then, the following Saturday, Reverend Rob Marshall went on <a href="https://www.youtube.com/watch?v=Fpgly_DqaKM"><span style="color: red;">Radio 4's Thought for the Day</span></a> and talked about my 5 Live interview. My main point was that, on top of the Church of England's suggestion that people get good information when they have a diagnosis, why not come and meet Stan or someone else with Down's Syndrome. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And then the Pope got Down's with the kids. A girl with Down's got up during a regular papal service and went towards the Pontiff. Security men quickly moved in to take her back to her Mum. The Pope stopped them and told her to sit next to him. She did just that and Pope Francis continued his homily, <a href="https://indy100.com/article/pope-downs-syndrome-girl-special-olympics-reddit-twitter-8208081"><span style="color: red;">holding her hands.</span> </a></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">It's reassuring to hear this mood music from religious figures. And it's not just about the - at-times - tired old debate about pro-choice / pro-life that the church is so often associated with. All of this is, hopefully, pro-information and also showing positive images of Down's Syndrome - and I'm comfortable with that. </span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-21872301927415719692018-02-08T00:32:00.002-08:002018-02-08T00:53:27.685-08:00Haircut time: known to the community <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">'Oh my days. Are you <b>Stanley</b>? I haven't seen you in years'</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Stan and I were walking back home from the barber shop. A woman was berating a group of school pupils for playing football on the street. But as we arrived it all changed; one of them recognised Stan from primary school days. And we all had a lovely chat. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Stan had just been for a haircut, where everyone knows him. We'd been on the bus, where no one knew him but by the end of the ride, two men in their early twenties were his best friends. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And it struck me that Stan is well known in the community. I'm often approached in the supermarket by someone who was Stan's supporter for, say, a week, a few years ago. He can leave an impression with so many people. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">But it's his former primary school friend that I'm thinking about today. At that school everyone was encouraged to learn Makaton signing and everyone just knew Stanley. Other young people might not know how to react when they meet someone with a learning disability. That lad did. Because Stan had been a normal part of his primary education. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And I like to think that Stan teaches lots of people in our community lots of things about tolerance, understanding and the joy of life, every single day. </span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-40222575024378991542017-12-18T07:44:00.001-08:002017-12-22T03:39:53.606-08:00Autism-friendly Aladdin showing<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Thanks to Learning Disability Today for hosting <a href="https://www.learningdisabilitytoday.co.uk/genie-out-of-the-bottle"><span style="color: red;">my blog on our visit to an autism-friendly showing</span></a> of Aladdin in the summer. 'Imagine a performance where the sound of a wrapper being crunched is drowned out by lots of other noise.' </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><span style="color: red;"><a href="https://soundcloud.com/user-646683117/learning-disability-and-political-activism-are-we-any-good-podcast-6" target="_blank"><span style="color: red;">Soundcloud version >>></span></a></span></span><br />
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<span style="color: red;"><span style="color: #1155cc;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><a href="https://www.youtube.com/watch?v=EUkj0Jvy1Eo&list=PLAwqT0cApAGILRBn6AqUSse2oTMRCZgHM&index=1" target="_blank"><span style="color: red;">YouTube version >>></span></a></span></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Are we in the learning disability movement any good at protesting? Steve talks to activist Paul Richards who has set up Gig Buddies and Stay up Late so that people with learning disabilities can have awesome nights out. He also introduces Jennifer, who has a learning disability and has strong views on activism. And he looks at the R Word campaign in the USA, which challenges use of the word Retard. It's Down's with the kids - the podcast. Music from www.bensound.com/royalty-free-music</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-65327324686559070392017-10-18T06:00:00.002-07:002017-10-18T06:00:50.502-07:00What's the Harvey Weinstein row got to do with learning disability?<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Letter to the i newspaper, 18 October 2017</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Grace Dent's <a href="http://www.independent.co.uk/voices/james-corden-harvey-weinstein-women-can-joke-but-you-cant-a8002926.html"><span style="color: red;">article on James Corden's jokes</span></a> about Harvey Weinstein was forceful and will hopefully stop some comedians from doing the same. But I have a problem. My son has a learning disability and too often I hear comedians defending jokes cracked about people like my son because 'anything should be discussed by an artist'. One rule for some and one for others? What we need to do in the learning disability movement is to be more convincing in our arguments and take a leaf out of Grace Dent's book.</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-21054313125106821122017-08-20T09:10:00.000-07:002017-08-28T01:38:31.475-07:00Bias: Stan and the super-strength lager on the 263<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Are we all prejudiced? Would you engage with someone on a bus who has a learning disability or perhaps someone who has obvious alcohol issues? </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">On the 263, Stan met a man who was drinking super-strength lager. It was 9.45 in the morning. Are you jumping to conclusions, reader? Was this man, probably an expert-by-experience with street homeless issues, making a scene?</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <a href="https://2.bp.blogspot.com/-cEmEl08aTUM/WX2aY0WtK-I/AAAAAAAAInQ/2fycgG1NIX0GnxGysK303IccznzTvD6AgCLcBGAs/s1600/high-abv.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="483" data-original-width="1074" height="143" src="https://2.bp.blogspot.com/-cEmEl08aTUM/WX2aY0WtK-I/AAAAAAAAInQ/2fycgG1NIX0GnxGysK303IccznzTvD6AgCLcBGAs/s320/high-abv.jpg" width="320" /></a><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Well, no. He was keeping himself-to-himself; but Stan made a beeline for him and introduced himself. Before you knew it they were captivating the passengers with one of the most bizarre and entertaining conversations I've ever heard. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Down's Mum reckons that Stan is different to many people because he doesn't have a biased bone in his body. Because of his learning disability, he doesn't know how to be prejudiced and that can be a fantastic thing. He was just born like that...</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Back to the bus. The man didn't offer Stan any of his 7.5% proof booze but he did fish in his pocket and give Stan £1. Then he showed Stan his West Ham tattoo.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">The other passengers were like the person on the train reading over your shoulder. They couldn't take their eyes off the situation. And that's a good thing for challenging bias. Because here were two people connecting and perhaps, just perhaps, breaking down a few barriers. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">See also: <a href="http://www.scie.org.uk/news/opinions/unconscious-bias">Unconscious bias isn't just somebody else problem; it’s also yours. By Ossie Stuart, equality / diversity consultant</a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-26493178159733061052017-07-24T11:55:00.001-07:002017-07-25T02:11:03.086-07:00What's testing for Down's Syndrome got to do with Baywatch?<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">In Italy last week, a young man called Valeri Katoya saved a ten-year-old girl's life. The 17-year-old is reportedly a champion swimmer. <a href="https://www.theweeklyobserver.com/17-year-old-athlete-syndrome-saved-10-year-old-girl-drowning-italy/21610/">The report looks like it's been translated </a>so you don't get much information. But Valeri did save this girl's life. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">If this had been reported it to the English-speaking press, no doubt someone wouldn't have been able to resist the urge to describe this as a heart-rendering tale. If you've read any of my stuff before you'll know I have strong views on people prescribing an act of kindness / bravery / endeavour as 'inspiring' just because they find it so. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And this was much more than heart-warming. He saved her life. And it made me think: we don't know the circumstances of Valeri's birth but let's assume that his parents might have been told that their baby wouldn't amount to much. Let's then assume they didn't go ahead with the pregnancy. Not only would Valeri not have gone on to be a champion swimmer and a lifesaver worthy of Baywatch, but that girl may well not be with us.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">The next time someone discusses testing for Down's Syndrome, perhaps chuck Valeri's story into the mix. Because sometimes the value that we bring to life, as humans, is only realised in an unexpected manner. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><a href="http://downswiththekids.blogspot.co.uk/2017/04/not-just-doing-us-favour-why-saracens.html">Related blog: How Stan contributes to society</a></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-43400535483379112572017-04-30T11:56:00.004-07:002017-07-06T07:16:47.664-07:00Not just doing us a favour: why Saracens get it<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Stan goes to Saracens once a week; not to play rugby but to do cheerleading. So on the last home game of the season Stan and two other young men (who go to the club and play rugby) were asked to come and hand out hampers to the people in the boxes and to give speeches to the banqueting tables. We explained to fans what the Saracens Sport Foundation does in the community. The three young men also took the ball on the pitch before the game kicked off. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So I got to say the same thing to fans eight times and on each occasion I honed it. By the end I was putting together something more-or-less coherent and it goes like this:</span><br />
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<b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Not just doing us a favour</span></b><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I sometimes get irked when I see that a person with Down's or another learning disability has scored a touchdown or done something endearing like<b> <a href="http://www.msn.com/en-gb/video/animals/bystanders-join-boy-with-downs-syndrome-to-dance-in-front-of-busker/vp-BBAtPA3"><span style="color: #e69138;">dance along to a busker</span><span style="color: red;">.</span></a></b> Not because they're doing it; all power to them. No - I get disappointed because the press report it as if it's some amazing event and often say it's 'heartwarming' and 'inspirational' when the person involved couldn't care less whether it is. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So I told the Saracens fans, as they tucked into lunch, that Stan, Mark and Ollie weren't speaking to them and taking the ball on the pitch because someone was doing them a favour. They weren't the recipients of some kindly act because they suffer so much in their lives. That's an old-fashioned and patronising take on this kind of thing. </span><br />
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<b><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">It's a relationship</span></b><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">No. I told the rugby fans that in the same way that Saracens are putting something back into the community, Stan, Mark and Ollie are doing so likewise. It's a symbiotic relationship that I know Saracens Sport Foundation 'gets'. The fans yesterday met three young men who are great advocates for showing that people with learning disabilities have so much to contribute; by playing sport, by learning dance moves; by teaching tolerance and understanding; and by standing up and telling people about it. So they weren't there to make up the numbers in a condescending way. They were there to be part of a success story. </span><br />
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<span style="color: red; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b><a href="https://www.youtube.com/watch?v=Ax7xppcN4mg"><span style="color: #e69138;">See Stan, Mark and Ollie on their big day >></span><span style="color: orange;">></span></a></b></span><br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-14562402942382445602017-04-23T05:33:00.000-07:002017-04-26T13:22:54.911-07:00Talking to the media about your cause: a survival guide. Podcast #5 <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Do you wish you had the confidence to speak to the media and raise awareness for your cause? </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="color: blue; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b><i><a href="https://soundcloud.com/user-646683117/talking-to-the-media-about-your-cause-a-survival-guide-podcast-5">Listen on Soundcloud >>></a></i></b></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="color: blue; font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i><b><a href="https://www.youtube.com/playlist?list=PLAwqT0cApAGILRBn6AqUSse2oTMRCZgHM">Listen on YouTube >>></a></b></i></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">For this edition of the podcast I’m sharing some of my tips on talking to the media. I used to work at the BBC and elsewhere and also have done many interviews raising awareness about Down’s Syndrome. But you don’t need all that experience. You can do it too. I speak to a care leaver who’s done a few interviews – and a film-maker, who helps you with what to do when recording equipment’s thrust at you. Print / online / radio / TV - why shouldn't it be you telling the world your views? Down's with the kids - the blog and book, can be found here downswiththekids.blogspot.co.uk/</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Music is kindly provided by www.bensound.com/royalty-free-music. Thanks for listening.</span><br />
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-2148518185377821700.post-71780933666872465852017-03-21T12:10:00.000-07:002017-03-21T12:10:00.061-07:00Not in a huff: Down's Syndrome awareness week<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">We're really pleased with the filming and editing that the Huffington Post have done. They've made a film about Stan; they filmed him and other members of the cheerleading group at Saracens rugby club. It was released today to coincide with <a href="https://worlddownsyndromeday.org/">World Down Syndrome Da</a>y and <a href="https://www.downs-syndrome.org.uk/about/campaigns/awareness-week-2017/">Down's Syndrome Awareness Week.</a> </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><i><a href="http://www.huffingtonpost.co.uk/entry/teen-with-downs-syndrome-stanley-palmer-living-life-to-the-full_uk_58cfe36de4b0be71dcf630bf"><b>Meet Stan, the teen proving Down’s Syndrome doesn’t stop you living life to the full >>></b></a></i></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The film-makers were careful to use words that didn't offend or patronise, like 'suffering from' Down's etc. But also the film gives a good indication, we hope of life with Stan. It can be a challenge, but it's as busy as the cheerleading session. </span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-32550088317783837242017-03-09T09:32:00.000-08:002017-03-10T10:11:02.406-08:00"It's OK to say 'retarded'" says comedian Louis CK. And then he makes his big mistake...<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Some comedians use the term ‘retarded’ and they’re currently headlocked in a battle with the <a href="http://www.r-word.org/">R Word campaign</a>. The latter don’t want people to use the word. But comic Louis CK says that it’s OK to employ it. He justifies it in a YouTube video - and I have to warn you that even if you’re not easily offended, <a href="https://www.youtube.com/watch?v=7Z6GcLbInn8">this is a tough listen</a>. (Warning: Offensive swearing)<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">You hear a recording of a young man with learning difficulties, who says he's upset about hearing the R Word. Louis CK responds: “I doubt that he was offended by the word. I think that somebody told him to say it.” <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Is this a persuasive argument? The older I get the less I want to see the world as 'prescriptive' - and so not everyone has to be offended by the R Word, just because someone tells them to. And Louis CK makes a case for saying that the word has been hijacked by the families and carers of people with learning disabilities. </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">He says that people don’t mean to offend those with learning difficulties when they use ‘retard’.</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-large;"><b>"I don't mean you"</b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">However, the suggestion is that people with learning disabilities couldn’t possibly understand the nuances and aims of the campaign to tackle the use of the R Word. </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Let’s sum up what Louis CK is saying: “They wouldn’t possibly understand.” And I find that deeply offensive; it's an assumption and a mistake. </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Another comedian on the YouTube recording says: “He doesn’t understand what he’s saying.”</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Some people don’t have the capacity to understand. But many do. And so it's offensive to those people with learning difficulties who are genuinely troubled by the use of the R Word; because they’ve worked out for themselves what they believe is and isn't offensive.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">For balance; <a href="https://www.youtube.com/watch?v=i0-WEOmQtrI">here’s the R Word’s side of the argument.</a> <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I appreciate that Louis CK's at least tried to justify himself. But I care less about his use of the R Word than his lazy assumption that it won't offend people because everyone with intellectual disabilities is the same; ie unable to have a view on this subject. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">When is society going to realise that people with learning disabilities have opinions, thoughts, aspirations, hopes and yes, feelings? </span><o:p></o:p></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-10398493663661924372017-02-04T02:15:00.002-08:002017-02-04T02:42:38.500-08:00Stan's 15: why completing the crossword became important on his birthday<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I was stuck on the final clue: 'Heated to destroy bacteria'. 11 letters. About five times a year I complete the </span>i<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"> crossword, without cheating. </span><span style="font-family: arial, helvetica, sans-serif; font-size: large;">And here I was, about to 'complete-without-cheat', on Stan's 15th birthday. But there was no way I was going to get this fiendish clue. And then I had an out-of-body experience. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">First though, going back a decade-and-a-half ago, when Stan was a few months old, we sat by his hospital bed willing him to come back to us. Down's Mum spent the whole time egging him on to recover from two bouts of heart surgery. Breathing life into him. Willing him on. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And, 15 years later, here I was on the Piccadilly Line, and I suddenly realised that I had to get this clue. I could do it. I could will it. And I did it. </span><span style="font-family: arial, helvetica, sans-serif; font-size: large;">And we did it in 2002. And we're just so grateful that Stan's in our lives. Happy birthday mate. </span><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-11064737121585208352017-01-26T12:11:00.000-08:002017-03-21T12:12:00.797-07:00Podcast: Down's Syndrome and employment <div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-ytqRd-ar0Bc/WIqBHc8WB7I/AAAAAAAAF7k/8Ep7gbro83YSX6AGDgDDgT5dPL1mg0TPACLcB/s1600/IMG_4181.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="239" src="https://1.bp.blogspot.com/-ytqRd-ar0Bc/WIqBHc8WB7I/AAAAAAAAF7k/8Ep7gbro83YSX6AGDgDDgT5dPL1mg0TPACLcB/s320/IMG_4181.JPG" width="320" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><a href="https://soundcloud.com/user-646683117/downs-syndrome-employment-podcast-episode-4">This episode</a> it's time to look at employment for people with Down's Syndrome - Getting jobs is still a huge challenge for people like my Stan (although look - he's ready!) but let's travel to North Carolina, Boston and Derbyshire to hear from people with DS who are in the workplace. Attitudes are changing and it starts, not with what barriers are in place, but with what’s possible. I've got stories about how people, who have Down's, are getting into work and becoming more accepted in society.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><a href="https://soundcloud.com/user-646683117/downs-syndrome-employment-podcast-episode-4">It's a podcast about employment and Down's Syndrome. </a></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-91047960767874814822016-12-03T06:20:00.000-08:002016-12-03T06:32:38.041-08:00Social media muscles<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">At the time of writing I'm looking at the picture of a baby born the other day - the baby has Down's Syndrome. I belong to a Facebook group for parents who have children with Down's. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And a woman joined the group during her pregnancy. She's now a Down's mum having given birth to a gorgeous bundle of joy. The mum's been deluged with good luck messages and affirmations of the type you get when a typically-developing child has been born. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">It was different when Stan was born, pre-social-media. I said <a href="https://www.amazon.co.uk/Downs-kids-Stanley-Matthew-Palmer-ebook/dp/B00O8OHKRK/ref=sr_1_2?ie=UTF8&qid=1412758452&sr=8-2&keywords=down%27s+with+the+kids">in my book </a>that Stan's arrival drew in many less flowers than when his older brother was born. The whole thing was thoroughly depressing. I'm sure many people said that Stan was lovely but we didn't have access to a community that really meant it. </span><br />
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<span style="font-size: large;">How would it have been for us if social media had been around when Stan was born and when he had heart surgery? The other day a parent posted that their child was in hospital having a similar operation to the one Stan had in 2002. As this child was small and poorly, just as Stan was, I posted the photo above, encouraging her to have faith because they can all grow up. I hope it helped. </span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">But for us, when Stan was born we were given a VHS tape from the 1980s depicting girls with Down's wearing inappropriately frilly dresses. Yuk. And we had no social media to draw encouragement from. </span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">I'm just glad that new babies are being welcomed into the world in a way that all babies should be. And I'm sure it helps the family no end. </span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-31143141450812920522016-11-11T03:00:00.000-08:002016-11-12T04:12:12.494-08:00One for the dads<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I've stumbled over an audio recording I made exactly ten years ago in November 2006. I interviewed fellow fathers about being the dad to a child with a learning disability. It never went to air...until now. As one dad says: "My son's special because he's a wonderful kid not because of the technical term."</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i><b><br /><a href="https://soundcloud.com/user-646683117/downs-with-the-kids-episode-3-the-dads">Steve talks about this on his latest podcast </a></b></i></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I made the recording at the launch of a report by the Foundation for People with Learning Disabilities – <a href="https://www.mentalhealth.org.uk/sites/default/files/recognising_fathers_report.pdf">Recognising Fathers</a>. It discovered that some dads weren't given time off work for hospital appointments, some health staff ignored the dad – spoke through him, if you like - and talked only to the Mum - and the report alluded to a sense of desperation amongst some dads about how powerless and unsupported they felt. My testimony was included in the project. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">When you have a child with a learning disability – and as that child grows up it can be hard for the parents to cope. As far as men go the 2006 Recognising Fathers report was, I think, really important, because it identified that some dads do really struggle. I hope that men recognise that they’re not alone. </span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i><br /></i></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-9883386123158358442016-10-09T01:54:00.003-07:002017-12-18T07:48:16.910-08:00Stan in the media<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>Broadcast media appearances</b> </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><a href="https://www.youtube.com/playlist?list=PLAwqT0cApAGK8RSJzRhGKyEXNFjMzly8b">YouTube channel </a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><b>Newspaper, magazine and online</b></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">15 December 2017 - <a href="https://www.learningdisabilitytoday.co.uk/genie-out-of-the-bottle">Genie let out of the bottle by LD-friendly production - Learning Disability Today </a></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">18 October 2017 - <a href="https://downswiththekids.blogspot.co.uk/2017/10/whats-harvey-weinstein-row-got-to-do.html">Letter to the i newspaper about comedians joking about learning disability</a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">24 March 2017 - <span style="color: blue;"><a href="http://www.nlhnews.co.uk/article.cfm?id=118314&headline=Barnet%20dad%20gives%20candid%20insight%20into%20life%20with%20son%20with%20Down%27s%20Syndrome&sectionIs=news&searchyear=2017">Barnet Press - Barnet dad gives candid insight into life with son with Down's Syndrome </a></span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">21 March 2017 - <a href="http://www.huffingtonpost.co.uk/entry/teen-with-downs-syndrome-stanley-palmer-living-life-to-the-full_uk_58cfe36de4b0be71dcf630bf">Meet Stan, The Teen Proving Down’s Syndrome Doesn’t Stop You Living Life To The Full - Huffington Post - with video </a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">5 October 2016 - <a href="https://www.thesun.co.uk/living/1912393/actress-sally-phillips-sparks-debate-over-new-downs-test/">The Sun - Talking about the Sally Phillips documentary </a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">21 March 2016 - <a href="http://www.huffingtonpost.co.uk/2016/03/21/10-things-i-ve-learnt-about-having-a-child-with-down-s-syndrome_n_7320934.html">Huffington Post - 10 Things I’ve Learned About Having A Child With Down’s Syndrome</a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">3 November 2014 - Community Care - <a href="http://www.communitycare.co.uk/2014/11/03/sons-social-care-support-shows-another-side-system-work/">‘My son’s social care support shows me another side to the system I work in’</a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">29 October 2014 - <a href="https://www.learningdisabilitytoday.co.uk/time-for-more-complex-stories-about-people-with-downs-syndrome.aspx">Learning Disability Today - Time for more complex stories about people with Down’s syndrome</a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">21 December 2013 - <a href="http://www.mirror.co.uk/news/world-news/college-entrant-rion-holcombe-pioneer-2949466">Daily Mirror - College entrant Rion Holcombe is a pioneer for young people with Down's Syndrome - and others will follow</a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">29 January 2013 - <a href="http://downswiththekids.blogspot.co.uk/2013/01/letter-to-evening-standard-undateables.html">Letter to the Evening Standard about the Undateables </a></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">28 October 2009 - Letter to Independent about The Specials </span><br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-14483594784993404282016-10-07T08:31:00.003-07:002016-11-12T03:03:59.398-08:00I found my place in the Sun<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I was a bit nervous buying the newspaper. I was pretty sure that Stan and I would be in there but newspapers can sometimes 'drop' items if bigger news comes along. So I got a copy of the Sun and <a href="https://www.thesun.co.uk/living/1912393/actress-sally-phillips-sparks-debate-over-new-downs-test/">our story was featured.</a> (Printed edition below). </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">The kerfuffle was started by actress Sally Phillips who asked on a BBC2 documentary: <a href="http://www.radiotimes.com/news/2016-10-05/sally-phillips-society-wants-to-stop-down-syndrome-babies-being-born--and-its-wrong">What would a world without Down's Syndrome look like?</a> </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><i><b><a href="https://soundcloud.com/user-646683117/dwtkp-episode-two-13-oct-2016">Steve talks about this on his latest podcast</a></b></i></span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I found it fascinating, not just because of the stuff about Down's Syndrome. But Sally goes on to look at geneticism generally and how we're on the verge of being able to choose kids who aren't disabled, aren't ginger and are good at maths. It's just that kids with Down's on in the vanguard. You can't tell if someone in the womb will go on to have an autistic spectrum condition...just yet. But perhaps soon you will be able to and that raises divisive ethical questions.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">When the Sun contacted me I saw it as a good opportunity to spread the word about Down's Syndrome. As a parent, it can be hard work but it can also be rewarding. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span> <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Stan watched much of the documentary with us. He was interested to see other people with Down's on TV. And Sally's love of Olly, and her passion about the issue, made for a really good show. I wish there had been more on geneticism more widely. But it was a good effort and it certainly got people talking. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-17518134515720065882016-09-09T01:42:00.000-07:002016-09-09T01:42:03.579-07:00Panic in the Tesco? Not really...<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">I was running up and down the aisles of the massive superstore - running but not panicking. I'd got the Tesco security guards to cover the entrance; I'd got the help desk to put all staff on alert. Stan had slipped away from me. He wasn't exactly missing - but he was definitely absent.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">The good thing about not panicking is that you get to think straight. You swing a plan of action into being and you think about what you're doing. So it suddenly dawned on me that Stan likes to go to the Costa outlet which is situated at the back of the store. And there he was in the coffee shop, having pilfered a strawberry smoothie. Quite a relief but why am I so pleased with myself about this? The answer is that I did all the things I was supposed to do.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Of course, like in Peter Pan, all this has happened before and all of it will happen again. A couple of weeks ago Stan took off and the police found him. His brother reckons that, at almost 15, Stan has hormones raging through him and that when you find it difficult to express yourself, it's perhaps easier to take the path of least resistance; ie bugger off.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">But, despite the fact that I lost my son with Down's and it was worrying, I'm celebrating a small victory. I actually nailed it by acting calmly. And then I took Stan around the store, getting him to apologise to various members of staff who had helped us. My advice to parents / carers in a similar position? Have a plan. Panic by all means. But the plan will help you to centre your thoughts.</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-85310850667674082842016-08-19T10:09:00.000-07:002016-09-02T05:57:26.678-07:00Stan's holiday<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">In <a href="https://www.amazon.co.uk/Downs-kids-Stanley-Matthew-Palmer-ebook/dp/B00O8OHKRK/ref=sr_1_2?ie=UTF8&qid=1412758452&sr=8-2&keywords=down%27s+with+the+kids">my book in 2014</a> I wrote that we'd never go on holiday with Stan again. Our last trip as a family was the dreadful holiday of 2013. But something amazing's just happened and I'm writing this because if you feel like giving up - when your child with Down's is trying your patience - I'm here to tell you that it might get better. Back during the horror holiday three years ago, I suggested that if you're going on holiday with your child who has a learning disability, then remember to pack patience and I don’t mean the card game. You could be returning with emotional baggage.</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">Laddo doing the Fado 2016</span></td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">There are two reasons why I think that 2016 was a good year. One: Stan has grown up a bit. At 14 and a half we can reason with him. The place we just stayed in Portugal - if it had been three years ago, Stan would have smashed all the wine glasses. Now, he wasn't bothered. He was happier doing his own thing. Two: Arrangements. He had priority boarding to the gate and passport control, no waiting anywhere and that helped keep things calm. And he had access to his brother and cousin. In 2013, we were staying in a different place to his cousins. He hated that. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">So, we're bathing in the glow of a successful trip. Stan even danced in the square with a band. He wasn't perfect but we had a holiday. In 2014, I predicted that we would never have one with him again. So it's a great feeling. </span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-2148518185377821700.post-49452850176127908472016-03-24T12:47:00.000-07:002016-03-29T07:35:30.381-07:00Garth Brooks: Down's Syndrome freedom fighter? <span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Around 1993 I started listening to Garth Brooks's music. I even dragged Down's mum along to see the country singer at Wembley Arena. </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">And just now, because Garth's not on Spotify, I was having a trip down memory lane via YouTube and I found this. I nearly fainted:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Garth Brooks: Standing outside the fire (1993)</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Starring in this video is a young man with Down's Syndrome - Brandon - who takes part in a High School race. </span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">Now, these days, with social media, we're quite used to seeing people with Down's doing extraordinary (and ordinary - <a href="http://downswiththekids.blogspot.co.uk/2015/09/going-swimmingly-and-its-so-tedious.html">see previous blog</a>) things. But how extraordinary was it to see someone with Down's starring in a popular music video in 1993?</span><br />
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<span style="font-family: arial, helvetica, sans-serif; font-size: large;">However, Brandon, encouraged by his mum, spurns the Special Olympics to take part in the 'regular' race. His dad argues with the mum because he wants to protect Brandon from humiliation. The mum wants to push Brandon on so that he's not 'standing outside the fire', in the world according to Garth.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">If that scene was in a music video in 2016 I wonder if there'd be an uproar. You see, the <a href="http://www.specialolympics.org/">Special Olympics, 23 years on</a>, has so much more status these days. It's not something that anyone should be ashamed of taking part in. Perhaps in the 90s it was seen as second best. Not any longer. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: large;">But it's still amazing to come across this video. It's the first time I've ever seen it so, here in 2016, to look at this man 'standing outside the fire', and starring in Garth's video, has been fantastic. </span><br />
<br />Unknownnoreply@blogger.com0