Weekend reading and viewing: 10 - 11 June 2017

There is so much in this video that I want to dissect about the Down syndrome diagnosis narrative, but honestly, I don’t feel like making this a resource post… let’s just talk about it as friends do. Is that cool with you? 

But first – watch it if you haven’t ...

Let’s Talk: The Conversation On The Down Syndrome Diagnosis Narrative …

Meriah Nicholls, 5 June 2017

Cara discusses common Down Syndrome myths and explain how a community of “rockin moms” (moms of kids who “rock” an extra copy of the 21st chromosome) are working to socially construct society’s “next” conversations about DS through critically examining the impact of our language choices ...

Socially Constructing Down Syndrome: Confessions of a Rockin Mom 

Cara Jacocks, TEDxACU, published  26 May 2017 (video 17m 31s)

... I wrote a column published with the heading “Welcome 8 point 1 point 5 (his birth weight) We love you”, which went on to win an award, while Nick went on to be one of the best things that happened in our lives ...

David Margan on his Down syndrome son Nick turning 21

David Margan, The Courier-Mail, 7 June 2017

At a young age, I learned to be a responsible person. The instinct to be a protective sister came naturally. How could I not? The love of a baby, in my case a younger brother, came so natural. I couldn't imagine anyone not loving or adoring this small person. At this time, I didn't know he had Down syndrome, but it didn't matter. I think I was too young to understand what this even meant, and society wasn't open to those with disabilities during this time ...

Young Life with a Brother with Down Syndrome

Rhoda Penny, Rhoda G's Online Cafe, 29 May 2017

... In expanding your friendship and reading circles to adults from the disability community, you will likely see things from an altogether different perspective, and one that is often highly enlightening!

Blogs are an excellent avenue by which you can forge forth and figure out who sounds most like someone you want to get to know ...

Mix Some Blogs by Adults with Disabilities into Your Parent Blog Reading Routine

Friendship Circle, 30 March 2017

... there are some things my kids intuitively grasp without my help. To my surprise, nearly everyone I meet below the age of 4 just rolls with it when it comes to disability. Ableism hasn’t taken hold yet. Here are five things I’ve seen young children totally understand about disability that unfortunately, most adults struggle with ...

5 things children totally understand about disability that most adults do not

Emily Beitiks, Think Inclusive, 26 January 2017

Weekend reading and listening: 3 - 4 June 2017

When I first started teaching sexuality education, I focused on people with disabilities, the parents and carers of people with disabilities, and professionals who worked with people with disabilities. I truly loved my work. When I moved back to the United States, I attempted to bring that work with me, pitching various disability support organizations around Chicago to teach sexuality education. The best response I got was...let’s call it polite disinterest ...

Sexuality education for parents of young people with Down Syndrome

Kim Cavill, Chicago Now

23 May 2017

... Perhaps because of some of the early beliefs that people with developmental disabilities are nonsexual, they have not had access to appropriate and adequate sexual education. Sex education, within the typical population, is gradually shifting from being based on the assumption of heterosexuality to being more inclusive. But even the discussions around these shifts have not occurred to the same extent in the service-providing sector for people with developmental disabilities ...

Speaking OUT: Understanding Sexuality and Diversity in 
LGBTQ+ Individuals with Developmental Disabilities
Megan Abou Chacra, Yona Lunsky and Dave Hingsburger, 
International Journal for Direct Support Professionals, Volume 6, Issue 6 
June 2017

• Link to back issues of the International Journal for Direct Support Professionals on the Vita Living Services website, here. It is published in both English and French.

... It took me this long to realize that my fellow parents are only part of the puzzle and they can only offer me so much peace of mind. Only people who live with Down syndrome can walk me through what it feels like. 

Oh, but that’s ok, we tell ourselves. We justify our non-involvement of people with Down syndrome by saying we are having private conversations or that we are talking about things only parents can understand. Let me be clear: these things are ok and good and helpful. The problem starts when we don’t leave that bubble, or react with anger when disabled voices encroach on that bubble ...

Parents Of Children With Disabilities: 

Are We Speaking With Or For A Community?

Melissa Stolz, Two Thirds of the Planet

12 January 2016

... When she got to the cashier she pulled out her money and gave it over. Here's the amazing thing. It's a small thing. But it's a huge thing too. During the time she was paying, and accepting the change, and putting it back into her purse, she never looked to him. She didn't look for approval. She didn't look in fear of having made a mistake. She didn't look to him for a cue of any kind. She just did what was needed to be done and then picked up her tray and moved on, going ahead, while he paid, to select a table ...

She didn't look

Dave Hingsburger, Of Battered Aspect 

20 May 2017

Comic book fans are very attached to their universe, but are they ready for a superhero with a disability? A new comic, Superb, debuts in July featuring a character with Down syndrome. Author Sarah Kanake's brother has Down syndrome and she's written a novel featuring a main character with the condition. Hilary Harper talked to her on Saturday Breakfast ... (8m 24s audio file)

It's a bird, it's a plane: it's a superhero with Down syndrome

Hilary Harper, Saturday Breakfast (ABC Radio Melbourne)

27 May 2017

• Friday essay: on telling the stories of characters with Down syndrome, Sarah Kanake, The Conversation, 22 April 2016
• reviews of Sarah Kanake's Sing Fox to Me  

#7 “ People with disabilities are an unfortunate drain on society.”

The Facts: Considering the ways society limits the lives of people with disabilities, it’s the other way around: society is a drain on people with disabilities. 

Significant contributions made by people with special needs to our communities are well documented.

The 8 most atrocious myths about inclusive education

Tim Villegas, Think Inclusive, 13 January 2015

Weekend reading and viewing: 27 - 28 May 2017

Austin Underwood, 39, went to college right out of high school, and studied to be a prep chef. He’s lived on his own ever since graduation, but since jobs in the restaurant business were hard to find, he worked at a local grocery store for 13 years before asking a local restaurateur for a job. And in the last two years, it’s incredibly exciting to hear how his dreams have begun to unfold!

Austin Underwood
In My Own Words, 16 May 2017

Most of us take for granted the ability to have fluid, seamless verbal interactions on a daily basis. This is likely due to the fact that many of us learn the skill of speech with little to no effort. It “miraculously” just occurs. Consider, though, that for your minimally verbal child, these “simple” interactions can be extremely frustrating and require an enormous amount of work ...

Increasing Verbal Interactions with Your Minimally Verbal Child

Damon Murtha, Friendship Circle

16 May 2017

... Benjamin is my son whom I love with all my heart. Nothing will ever change that, and understanding what is truly going on with him will make it easier to give him the help he needs. So, with a deep breath and a new resolve I told my husband, “I think we should have Benjamin tested for autism” ...

He is Still My Son

Dana Hemminger, Reflections from Holland

29 April 2017

... But sometimes, when things happen fast, I do notice. I notice not the disability in particular but the life the person with the disability is living. I notice the engagement that people have in their world or with others in their community. I notice that they are caught up in life, in the best way possible. I think this is noticeable to me because I grew up in a world without disabled people in it ...

Not Yet

Dave Hingsburger, Of Battered Aspect

28 April 2017 

Anh Do's guest this week is inspirational five-time Paralympian Kurt Fearnley. Anh tries to capture the charming larrikin's 'never say die' attitude.

Anh's Brush With Fame: Kurt Fearnley

Series 2 Ep 7, ABC TV on iView until 14 July 2017

Based on the New York Times bestseller, WONDER tells the inspiring and heartwarming story of August Pullman. Born with facial differences that, up until now, have prevented him from going to a mainstream school, Auggie becomes the most unlikely of heroes when he enters the local fifth grade. As his family, his new classmates, and the larger community all struggle to find their compassion and acceptance, Auggie’s extraordinary journey will unite them all and prove you can’t blend in when you were born to stand out.

Wonder: movie trailer

• Wonder is scheduled for US release November 2017. Thanks to Carly Findlay for the heads up on the movie. She also recommends the book by R J Palaccio.

Weekend reading, listening and viewing: 20 - 21 May 2017

... Gretel and Vanessa and the whole Cranfield family would teach me a lot over the next 15 years. A few years after that day in the park, another friend of mine had a baby who was diagnosed with Down Syndrome on the day he was born. 

Like Vanessa, this friend had no idea that the baby she’d been carrying had a disability. And as she struggled in those early days and weeks and months to process the radical, unexpected change in her life and the life of her husband and other children, I remember her saying “I can cope with the idea of a Down Syndrome child but what about when he becomes a man? I just can’t get my head around that.”

Well, Vanessa’s daughter Gretel is very much a woman now. She’s in her early twenties and her disability and the way she interacts in the world and what she needs from her parents continues to change ...

A mother shares what it’s like when your disabled daughter grows up (Podcast)

Mia Freedman and Vanessa Cranfield, Mammamia

17 May 2017

• The article is a transcript of the first part of the main podcast. There is a short extract of the podcast linked in the middle of the article, and the main, longer interview is at the bottom of the article.

... Since he is an authority on the leading edge in Down syndrome research, I quizzed him during our appointment on a lot of topics that keep coming up in the DS parent community. I have been using that information in private conversations and forums to help other parents make scientifically informed decisions for their children with Down syndrome. When we started this blog, I reached out to Dr. Skotko for an email interview, and he agreed enthusiastically ...

Ask the Expert: Dr. Brian Skotko

No BS About DS, 17 May 2017

With over 260 college options, the future is looking bright for students with intellectual disabilities. I can see the headline now: “Twin Brothers Graduate Side-by-Side, Accepted at the Same College”. 

I can see my precious boys, now men, stepping onto the platform hand-in-hand, receiving their diploma’s together ...

Class of 2031: Yes, My Son with Down Syndrome Can Go to College

Inclusion Revolution, 7 May 2017 

This photographic portrait project's aim, is to challenge any preconceptions people have about individuals who have a learning disability. The photographers brief was to look past the disability and focus on ability, personality and uniqueness. This film captures the journey we went on and the empowerment everyone who was involved felt. The images are honest and beautiful.

This Is Me: We Photographed People Beyond Their Disabilities

Zoe Proctor, Bored Panda

... But on the subject of disability, I found a Jesus that is, frankly, disappointing. He usually does precisely what disability advocates rail against. He reinforces the idea that the disabled body is broken, damaged. He treats the disabled body as something to fix ... My daughter attends church every Sunday, and, thankfully, no one tries to heal her. But I still seek a more promising disability theology ...

My daughter has a disability. I don’t want Jesus to ‘fix’ her

Heather Kirn Lanier, America Magazine

7 March 2017

Movies can have big impacts on people's lives, but not many films can say they've actually changed the law. Enter Irish film 'Sanctuary' about a couple who want to be together but face huge obstacles ...

Sanctuary is a new Irish film that has already changed history

Tom Power, Q, CBC Radio (Canada)

10 March 2017

• Includes a link to the film trailer and to a 16m interview with the film maker

Weekend reading and viewing: 13 - 14 May 2017

2017 - 2018 Federal Budget: information and opinionIt has been Federal Budget week in Australia - information and commentary relevant to people with Down syndrome and other disabilities and their carers has been compiled into a single page here.

It's been a big week of serious matters, with the Federal Budget and the subsequent analysis, and the tabling of the report into Qualifying for the Disability Support Pension in the House of Representatives, so take just 30 seconds to enjoy this very sweet ad by Johnson's Baby from Brazil.

I met you for the first time 5 years ago. I hated you the moment they introduced us. I was angry at your intrusion into my family. I didn’t want you to have any part in it. You weren’t expected and you certainly weren’t welcome ... I wanted to like you. To be like those that had known you much longer; so accepting and understanding ... You and I still have our moments ... For these things and more I do love you, Down syndrome ...

Dear Down Syndrome

Sherry Clair, Frolic

21 March 2017

Madeline has Down syndrome and lives with her family in Wollongong, NSW, Australia. Here is a letter that she wrote to her birth mother for Mother’s Day.

A letter to my birth mum - Maddie's story

The She Is Project, 15 May 2017

I’m one of those people who finds their life experience so interesting I wrote a book about it. But first I wrote for several years on my blog about my husband, about me and mostly about our son Thorin who lives with Down syndrome ... My most consistent dilemma is—is it really okay to write about Thorin? You can Google Thorin and find countless links to on-line content including photos. That thought fills me with concern and sometimes outright fear. So what over-rode my concerns to write about my son? And what restrictions do I impose? I have some thoughts ...

What I consider when writing about my son

Kari Wagner-Peck,  Bloom, 11 May 2017

I made a decision this week that I thought was surprisingly easy. I enrolled my just-turned-two-year-old son with Down syndrome in preschool. After having a developmental surge in October, Anderson has recently hit a plateau. He is able to walk, but is a little timid and a lot stubborn about it. We’ve been onboard the surge-plateau rollercoaster since his arrival, it’s normal. But now that he has less than one year before starting public school, everything seems more urgent ...

Letting Go My Child with Down Syndrome

From News Anchor to Homemaker

31 January 2017

Project explores relationships between client and support worker

Community Care Review, 9 March 2017

The dynamics of the relationship between young people with disability and their support worker have been captured in a new book produced as part of a national research project.

The book forms one part of a research project exploring what helps young people with cognitive disability and their paid support workers in their work together. The book, Relationships and Recognition: Photos about Working Together, is a collection of photos taken by 40 pairs of young people and support workers from six different parts of Australia who have shared their stories of their support relationship.

Lead investigator Dr Sally Robinson from the Centre for Children and Young People at Southern Cross University said the pairs took photos over several weeks of how they spend their time together and the activities they like to participate in ...

• You can download the book here

Weekend reading and viewing: 6 - 7 May 2017

On the 2nd of May, 2016, my beautiful friend, Annie Love, lost her son, Nicholas. He was just four years old. A mere baby – and the baby of the family. Just a little guy but in his wake, a gaping hole. And all I could think was, how will Annie keep from falling in? ... My limited experience of loss and grief tells me that this space will never be filled. It can’t be. You learn to live around the space ...

Remembering Nicholas

The Little Mumma, 2 May 2017

A short video about an experimental play written by Kathryn Evans, a woman with mosaic Down syndrome who is recovering from 'frozen syndrome', a result of anxiety.

Frozen Girl 

Today Tonight, Adelaide, 

28 April 2017
Tutti Arts (Adelaide)

... My intention ... is to give an account of how standing up for people with intellectual disabilities is possible, even to arguably the scariest individuals you can imagine. Here’s what happened ...

My Marine instructor insulted me by using the r-word. This is how I responded

Jay Mitchell

Upworthy, 22 July 2016

In a world where science is getting dangerously close in allowing people to play the role of natural selection, this three-part series will address why Down syndrome is vital in enriching our society… now and in the future.

In the first episode we go to America to meet Stephanie Thompson, the head of the National Down Syndrome Adoption Network who finds families desperate to give babies with Down syndrome a home. We also look at her personal experience in having a son with Down syndrome, who’s been in care for the last decade ...

What's Up With Down Syndrome? Adoption

Attitude Live, 30 April 2017

(video 28m 37s - first video in a series of three)

I'm tired of influential people using disability slurs as insults. As long as these people continue to use them, the average person in the workplace or schoolyard or street will think it's OK, too ...

Disability slurs are as damaging as racism and homophobia

Carly Findlay

Sydney Morning Herald, 1 May 2017

Weekend reading and viewing: 29 - 30 April 2017

I knew my daughter and her friends were awesome, but I had no idea just how awesome until today. Devon, my 20-year-old awesome girl who happens to have Down Syndrome, goes to Highline College as part of the Achieve program ... She tripped running to get across the street last Tuesday trying to catch the light rail breaking her ankle. She didn’t know her ankle was broken, but she was with her so called “disabled friends” who made sure she was safe, and helped her get all of the way home and got a hold of my wife to make sure she didn’t have to try to ride her bike home. They were a platoon of friends who knew exactly what to do, elevation, ice, help, who to call, they were even prepared to call an ambulance ...

OMG

Sean Adelman, Eximius

25 April 2017

NOS Magazine published an anti-choice and a pro-choice piece, back to back, last week ...

Abortion and Disability: Pro and Anti

David Perry, How Did We Get Into This Mess? 

24 April 2017

“I Don’t Feel at Home in This World Anymore” won the Grand Jury Prize at Sundance in January and with good reason. First-time writer-director Macon Blair created a gem that mashes up a comedy-crime-revenge-thriller buddy film wrapped in a female-driven plot that may be the first film ever to crush the notion ‘retard’ is a funny word ...

Feeling At Home — A Chat With Filmmaker, Macon Blair

Kari Wagner-Peck, Good Men Project

26 April 2017

If you have not seen the TedX talk by Torrie Dunlap of Kids Included together, then you are missing out on one of the most cohesive explanation of the different models of how we view disability. After watching this 17 minute video you won;t be able to view disability the same way ...

The real problem with disability is how we think about it

Think Inclusive, 2015 

(Video and Transcript)

... That’s what Kari Wagner-Peck yelled at a man who used the “R-word” in her son’s presence. Wagner-Peck, a Portland, ME-based blogger whose son has Down syndrome, says she felt as if the man understood her when she told him not to use language like that again ...

Putting a Stop to the 'R-Word'

Sabrina Sooknanan, NY Metro Parents

24 April 2017

Weekend reading and viewing: 22 - 23 April 2017

The parent essay or memoir on discovering one's child is not typical in some fashion is at once among the most common disability-related genre and one of the most difficult to do well. Of necessity, the essay has to move through ableist ideas about normality, encounter the challenges of having a disabled child, and then come out the other side of that encounter with ... wisdom? Hopefully, wisdom ...

Superbaby and Eugenics: He called my daughter lightning

David Perry, How Did We Get Into This Mess? 

17 April 2017

... As I recall the many stories I’ve read or heard over the years, I can’t help but ask this question: What is the big deal about Down syndrome, anyway? ... My husband listened to my rhetorical questions and offered his opinion: “Because it’s not easy. Parenting a child with Down syndrome takes a lot of work.” And while I wasn’t looking for an answer from him, per se, his answer exposed the truth about why our world wants to wipe Down syndrome from our midst: fear ...

The Greatest Danger of Down Syndrome

Chasing Genuine, 17 April 2017

... It is wonderful that so many people with Down’s syndrome are accepted and celebrated in society. There are more possibilities now than there were even just 20 years ago, but there is another side to the story. There are some people that have more than just Down’s syndrome, who have a dual diagnosis of Autism and Down’s syndrome, those that are not always understood and treated fairly ... Parents of these children and adults can often feel as we do, that we are stuck in No-Man’s-Land. We adore Ethan and what I describe here is an open and honest account of our family experience ...

Being Ethan's Mum

Nicky Holmes, DSA (UK) Journal

#133, Spring/Summer 2016

... They never spotted her loneliness and therefore never realized the vulnerability that comes with it ... no one teaches staff about the fact that people with visible intellectual disabilities have a target on their back and need a different kind of support when living independently in the community. Inclusion has sharp edges, but no one ever spoke to the staff about them and no one taught her how to avoid them ...

That's Nice (Part Two Of A Series)

Dave Hingsburger, Of Battered Aspect 

17 April 2017

Weekend reading: 14 - 15 April 2017

... This weekend, I was pretty excited to share a joy about my son, an ornery teenager with smelly feet (aren’t they all?) with intellectual disability, who kicked a massive goal. Not of the footy kind, but of the life kind. 

He learned to catch a public bus home ...

Ben’s Travels: buses and beyond…

Ben and Sam Paior , Every Australian Counts

12 April 2017

Conflicts of power and control commonly emerge in people with Down syndrome in their late 20’s and 30’s— later than their typical peers. While siblings and peers begin hitting transition milestones— like moving out, going to college or work, getting married— adults with Down syndrome may feel stagnant in comparison ...

Tips to help empower adults with Down syndrome

Bryn Gelaro and Dennis McGuire

Global Down Syndrome Foundation Newsletter

April 2017

... Why is it that some men feel this compulsion to carry all the responsibility and have the misguided belief that they alone have to hold the family together in the hour of need? I felt I had to be like the general of an army in the old war movies, standing tall on the hill, watching the battle play out in front of him, all the time remaining calm, emotionless and composed. This was my duty as the male in the household and, for the good of the family, I felt I could not let my emotions out, because if I did, I was being weak. When I look at these words now, I think, “What a load of rubbish!” ...

Tears of Strengths

Michael Harrison, Extract from Now I See:

 the Enriching Journey of Raising Children with Down syndrome

• Now I See has updated its website, and is calling for submission for the next edition of the book.

I ended up chatting with a young fellow, to me that's around 30, with a disability on a ride to work. He asked me what I did for a living and then told me about his job, about which he was quite proud. Without even lowering his voice to become conspiratorial, he openly said that we weren't like 'those others.' And while he is right, the employment rate of people with disabilities is abysmal, it is so because of employers refusing to make accommodations either to their workplaces or to their mindset ...

Us and Them Full Circle

Dave Hingsburger, Of Battered Aspect

5 April 2017

... Right now, Colleen is enjoying life to the fullest. I know that there will more changes and challenges to come with Colleen, her abilities and our life ... As shocking and heartbreaking as this diagnosis was for our family, I am grateful that it was caught early. The progression of the disease may not change, but we have the opportunity to make changes in Colleen’s care and have support each step of the way ...

Never hidden: Growing up with Down syndrome

Bo Thompson, Advocate Health News, 7 April 2017

'Let’s not give our kids the message that there’s a difference between being nice to a typical person and a disabled person. That the latter makes them somehow a “hero” while the first is expected as the norm. '

Sophie Trains, Respectfully Connected

Weekend reading and viewing: 8 - 9 April 2017

'You Can't Ask That' asks people with Down syndrome the awkward, inappropriate or uncomfortable questions you've always wanted to know the answers to, but never had the guts to ask.

You Can't Ask That - Series 2, Down Syndrome

ABC iView (available until 6 April 2020)

Series airs on ABC TV on Wednesdays at 9 pm

... he tried to assert himself, to do something for himself rather than have something done for him. Coming from the land of low expectations meant that he'd be trapped by helpers for his whole life, he would have been denied the freedom to try, the freedom to fail and the freedom to learn. He wants to move, into here, into now ...

Here, Now

Dave Hingsburger, Of Battered Aspect

29 March 2017

... Looking after Skye can sometimes be time consuming and what Howard and Rhona have to work out is how much time to devote to her, while making sure that big sister Molly and younger brother Lewis are not feeling neglected. Getting the balance right isn’t easy. It doesn’t mean that Skye has to be wrapped in cotton wool. All the normal family life, fights, squabbles, sulks and falling outs still occur, but for parents, finding the balance can be difficult, especially when one of the children needs extra attention ...

Skye, our granddaughter

Jeff Campbell, DSA (UK)

23 March 2017

... I had incredibly complicated emotions after Kate was born, as well. I absolutely loved her with every part of my heart, but I was sad, scared, and confused about her diagnosis. I get that. You are absolutely not alone. 

If I can offer you any piece of advice to start with, I would simply say: be patient with yourself. Your body just did an incredibly big thing and this season is tender and sensitive. It takes time to get to know any newborn, no matter what their ability ...

How did you make your peace?

Sipping Lemonade, 19 February 2017

Weekend reading and viewing: 1 - 2 April 2017

Alastair McEwin on Fighting the Good Fight
Down Syndrome Australia, 28 march 2017
At the recent WDSD Parliamentary Morning Tea hosted by DSA and the Parliamentary Friends of Disability at Parliament House Canberra, we were fortunate enough to have Disability Discrimination Commissioner Alastair McEwin deliver a speech ...

‘Having a sister with Down’s Syndrome has enriched our lives’
Claire Howie, Belfast News Letter, 22 March 2017
... It wasn’t until I was around 10 years old that I began to understand that Rachel had Down’s syndrome and I started to realise the implications this had on her and the rest of our family ...

A world without Down’s Syndrome? Is the non-invasive test for Down’s a positive medical breakthrough or a tool for eugenics?

Rebecca Bennett, University of Manchester Policy Blogs, 27 March 2017

In 2018, Non-Invasive Prenatal Testing for genetic conditions and variations will be available on the NHS. Here, Professor Rebecca Bennett looks at the controversy over this test being used to detect Down’s syndrome and argues for a policy of voluntary non-directive screening and testing ...

People with dual diagnoses should be included in the spotlight on World Down Syndrome Day
Gillian Marchenko, Key Ministry, 7 March 2017
... As a parent of two daughters with Down syndrome, I think World Down Syndrome Day is fantastic. I really do. But you know what? Sometimes, it’s not so fantastic. Here’s why ...

To the Brokenhearted on World Down syndrome Day

Mumma Love, 22 March 2017

... For those who will forever love a person with Down syndrome who is no longer in this world. You have been lucky enough to know the light and love and hugs that only someone with Down syndrome can give, and now you bear the grief of living without them. You accepted the role of advocate, defender and cheerleader, and sometimes it’s hard to watch the children with almond eyes grow up when your child cannot. Know that you will always be a part of this T21 tribe ...

You can’t be upside down in the gallery
Leticia Keighly, Embracing Wade, 26 February 2017
...when Wade throws his shoes across the room and announces, ‘Wade does Not. Like. Putting. On. Shoes. ANY. MORE!’ part of me is truly thrilled at the excellent sentence structure and improving articulation. I high-five him mentally over his expression of choice and fearless nature in the way he speaks his mind. I admire the award-winning performance whereby he pretends to have a tantrum by melodramatically crossing his arms and pretending to pout ...

Weekend reading and viewing: 25 - 26 March 2017

World Down Syndrome Day 2017 Conference at the UN, New York

You can see and read all the presentations at the conference here. 

You can go directly to an illustrated transcript of the presentation given by Olivia Hargroder from Brisbane here.

World Down Syndrome Day Awards - individuals with Down syndrome

Down Syndrome International, 14 March 2017

2 individuals with Down syndrome receive an award for outstanding self-advocacy:  

Emmanuel Bishop (United States) – Is an international self-advocate presenting at many conferences across the world. His self advocacy presentations are aimed at parents and professionals with the goal of improving quality of life for people with Down syndrome by raising hope and awareness of the abilities in all persons who have Down syndrome and defending the inherent dignity of all persons who have Down syndrome as valued members of society. 

Saylee Agavane (India) – Saylee starting learning Kathak (one of the eight forms of Indian Classical dances) at the age of 9.She attended all the batches from preliminary to advanced, in an inclusive environment. Saylee has won numerous awards during her 17 years of Classical Kathak Dance.

• All of the awards recipients are listed here.

A new World Down Syndrome Day video shrewdly takes on a problematic euphemism ... a World Down Syndrome Day viral video I can get behind ... 

Stop Calling Some Needs ‘Special’

David M Perry, The Establishment

21 March 2017

... I want to hear the voices of people with Down Syndrome, they are amazing voices and need only the microphone. 

The microphone. A spot on centre stage. And a world that will look and listen and learn ...

The Promposal and World Down Syndrome Day

Dave Hingsburger, Of Battered Aspect

21 March 2017

Life according to Maria Jose Paiz Arias, a 19-year-old Panamanian woman with big ambitions - and Down syndrome ...  'The cure to people's attitude towards me is getting to know me better. Over time, I can teach these people who I am and show them that I'm a good person' ...

Living with Down syndrome: 'It's a genetic accident'

Loes Witschge, Aljazeera 

21 March 2017

You Can't Ask That!

Have you seen the trailer for the second series of this popular ABC TV series? Several people with Down syndrome will appear in this series:

You Can't Ask That returns for a second season of life-affirming, insightful, hilarious and refreshingly inappropriate television. 

... You Can't Ask That asks groups of misunderstood, judged or marginalised Australians the awkward, inappropriate or uncomfortable questions you've always wanted to know the answers to, but have always been too afraid to ask.

You Can't Ask That Series 2 starts on ABC TV 1, 9.30 pm Thursday 6 April 2017 and will be on iView (Episode 1, Blind People, is available now).

Weekend reading and viewing: 18 - 19 March 2017

Not 'Special' Needs - just 'human needs'

CoorDown, Italy, Down Syndrome International, Down Syndrome Australia, Down's Syndrome Assocation (UK), Jérôme Lejeune Foundation​ (France), 16 March 2017

We’re proud to present Not Special Needs, the new CoorDown campaign for World Down Syndrome Day, 21 March. The video will be presented at the UN conference on 21 March.

What “special needs” does a person with Down syndrome really have? None.

People with Down syndrome, like everyone else, have basic human needs – to eat, drink, breathe and sleep – to be nurtured, loved, educated and sheltered – to move, communicate, contribute and work – and to share, love and live. 

Sure, people with Down syndrome may need extra assistance. Sometimes they even need significant assistance, and adjustments, to meet a particular need. But that doesn't make that common human need “special” ... see the video, read more on the campaign, the thinking behind it, and suggestions for taking an active part.

Visit the Not Special Needs website, and CoorDown Onlus on Instagram, and you will see some familiar Aussie faces!

You can also see and share  the video via You Tube:

'People make assumptions based on the way people look and act and do not always see the person behind the condition.' 

... 'Just because a person has a disability does not mean that they do not have dreams and hopes for the future,” (Ceridwen) Hughes said. “Many people with disabilities want to work and be valuable members of the community, and often they just need that opportunity' ...

Artist's Stunning Photos Shatter Misconceptions About Disabilities
Elyse Wanshel, Huffington Post

4 March 2017

I’ve never been too fussed either way and have used ‘Down syndrome’ ... it’s the term everyone knows. When I write I don’t particularly want to preach to the choir. It’s no great achievement convincing other parents that our kids are pretty cool—we know that already. I try to reach people who know very little about Down syndrome and may have never met anyone with the condition. I want to show people how much Down syndrome has changed so they may be more understanding and willing to accept Wade–and others with the condition–into the schools they attend or the workplaces they share or any other paths they may cross in the future. It’s a bit hard to change people’s hearts and minds about a condition they’ve never heard of or if they think I am talking about a completely different condition all together ... But I think I’ve changed my mind ...

Down syndrome or Trisomy 21?

Leticia Keighley, Embracing Wade

13 March 2017

The University of Kentucky Human Development Institute (HDI) is expanding its photo library and creating an important resource to improve the broad representation of people with disabilities from diverse backgrounds. 

... To create this library of resources, photographers Justin and Andy Meredith will also contribute to this project by donating their time to engage in photo shoots coordinated with the Massachusetts Down Syndrome Congress, the Down Syndrome Association of Central Kentucky and other HDI programs with connections to individuals with disabilities who are interested in participating in the photo shoot ...

This will also be the first time an individual with Down syndrome will participate as one of the principal photographers in this kind of effort. His involvement will also be an important vision of future potential for the many families participating in this photo shoot whose young children have Down syndrome and other disabilities” ... 

UK HDI Works to Improve Representation of People With Disabilities

Whitney Harder, UKNow 

13 March 2017

World Down Syndrome Day Awards 2017 announced

Down Syndrome International, 14 March 2017

Ahead of World Down Syndrome Day on Tuesday 21 March, Down Syndrome International (DSi) is delighted to announce the recipients of the 2017 World Down Syndrome Day Awards.

The World Down Syndrome Day Awards are presented to individuals or organisations whose voluntary, professional or scientific activities have strengthened and enriched the lives of people with Down syndrome, or contributed to scientific advancement related to Down syndrome.

Two awards were made to Australians:

For outstanding contribution towards scientific advancement related to Down syndrome:

Dr Pat Gunn (Australia) – Dr Gunn is now retired and in her eighties but she dedicated her entire working life to researching development in children with Down syndrome. Her research explored the psychological and environmental factors influencing how pre-school and school-aged children with Down syndrome acquire social and academic skills. The potential practical implications of this research were always at the forefront of her thinking and she was one of the first researchers in the field to look at development in Down syndrome through the lens of the wider family.

For outstanding contribution towards scientific advancement related to Down syndrome:

The University of Queensland Down Syndrome Research Program (Australia) - This award is for the Down Syndrome Research Program at The University of Queensland – the researchers, participants with Down syndrome, families and benefactors. The program has included a number of aspects; however, the centre piece is a longitudinal study which began with babies and their families in 1978. In 2018, the longitudinal study will celebrate 40 years of continuous research with these individuals and their families.

Read the full list of award winners and their profiles here.

All recipients are invited to a formal presentation of World Down Syndrome Day Awards taking place at the 13th World Down Syndrome Congress (WDSC) in Scotland, United Kingdom in July 2018.

Weekend reading and viewing: 11 - 12 March 2017

Can you imagine any person being told their life is a waste? That they won’t contribute to society? That they shouldn’t even be given the CHANCE to make their mark on the world? People with Down syndrome face this discrimination every day. As a part of our mission to improve research and medical care for people with Down syndrome, it is clear to us that our work must be framed in the context of human and civil rights.

The moving speech of our Quincy Jones Exceptional Advocacy Award Winner, Frank Stephens, underscores this sentiment and brought 1,200 attendees to their feet at the Be Beautiful Be Yourself Fashion Show. He is an author, actor, and exceptional advocate ... 

Frank Stephens stand up for Human Rights

Global Down Syndrome Foundation
8 March 2017 

People with Down syndrome have become poster children for a new generation of genetic screening tests conquering the world. In an interview about these tests, professor emeritus human genetics, former member Health council and UNESCO bio-ethics committee Dr. Galjaard, says Down syndrome should disappear ... Why?

Black Book Down

Renate Lindeman, Huffington Post

16 February 2017

There is a camp that holds vehemently to their right to say whatever the hell they want. And I’m with them.

As a former student of journalism, as an American, as a citizen of the world with an interest in truth and genuine dialogue, I do believe that you should be able to say whatever the hell you want. But what I also want the people in that camp to do is to take responsibility. 

Yes, you can say whatever you want. But, yes, there will be consequences ... 

It’s Time to Retire the ‘R Word’
Beth Zaletski, Alt Daily

21 March 2014

Our neighbourhoods need to be safe and inclusive places – safe for even the most vulnerable in our community. This includes the 668,100 Australians living with intellectual disability ... The main issue is not the type of accommodation, but its location. The neighbourhood, its design, and the community of people who live there are all significant factors for supporting safety and inclusion ...

Contested spaces: who belongs on the street where you live?

Cate MacMillan and Nicholas Stevens, The Conversation

6 March 2017

Two best friends are both disabled – but one is called “high-functioning,” while the other is called “low-functioning.” 

So what’s the difference – and what are these labels often missing? Check out this comic to find out. 

This shows how being labeled as high- or low-functioning influences the oppressive ways that people are treated. And it makes a crucial point about who these distinctions really serve in the end. 

Let’s Unpack the Damage of Being Labeled High- or Low-Functioning
M Slade, Everyday Feminism

4 March 2017

Weekend reading: 4 - 5 March 2017

Have you been wondering who the gorgeous kids are in the 2017 World Down Syndrome Day banner  on the Down Syndrome Australia website? 

Wil Schwagermann and Lily McCain are schoolmates from WA who love playdates and sleepovers, and say they will be 'best friends forever'. 

The West Australian published this article about them last October. 

Wil recently won the Best and Less Talent Search, so look out for him in their catalogues soon. 

Down Syndrome Australia, 28 February 2017 

Fewer Scottish women are terminating pregnancies following a Down's syndrome diagnosis, according to research ... Researchers said the findings might reflect changes in attitudes. 

... Down's Syndrome Scotland said: "We cautiously welcome these results but note that they cover the period 2000-2011 and would hope that a further study could be conducted, when data is available, to ascertain if this trend is continuing ...

Fewer Down's syndrome terminations in Scotland

BBC Glasgow and West Scotland

1 March 2017

... Providing a visual schedule allows your child to see what is going to happen in their day. My son, Nick is 22 years old and has Down syndrome and autism. Visual schedules provide many benefits for him to travel smoothly, through his daily routine ...

Why Use a Visual Schedule?

Down Syndrome with a Slice of Autism 

12 December 2016

More than 150 people living with a disability will march in this year’s Sydney Gay and Lesbian Mardi Gras parade, marking a record number for the event.

Record number of people with disability to march at Mardi Gras

Matthew Wade, Star Observer 

1 March 2017

... Australia’s immigration laws require migrants to be screened for medical conditions. This is to prove they will not be a “burden” on the community, specifically its health services. Children are most affected by this policy, as costs are calculated over a lifetime.
For someone found to be “burdensome”, the outcome isn’t always as positive as for Sumaya and the Baniks. A dozen or so families or their disabled members are deported from Australia every year ...

Australia has kept disabled migrant children out for decades 

– it’s time we gave them protection instead

Ruth Balint, The Conversation

2 March 2017 

Weekend reading and viewing: 25 - 26 February 2017

... A woman with Down Syndrome that I met a few years ago is getting married. I was so happy for her and immediately wrote my congratulations. She's a lovely woman, will make a lovely bride and the groom, a man I do not know, is a very lucky man ... It was almost a day later when I realized that, for the first time, the news of a person with an intellectual disability getting engaged and looking forward to marriage, was just news. It wasn't long ago that any announcement of any kind of romantic relationship between those with intellectual disabilities would stop me in my tracks ...

The announcement

Dave Hingsburger, Of Battered Aspect

18 February 2017

The world's oldest living man with Down's syndrome has celebrated his 77th birthday in a care home near Yeovil ...

World's oldest man with Down's syndrome celebrates 77th birthday

JoshFordham, Somerset Live 

21 February 2017

Recently, while I was giving a presentation on Down syndrome to a class of 7th graders, a student asked me, “Is there anything that people with Down syndrome are extra good at? Like, better than your average person?” 

My mind raced through how to use the last 90 seconds of class time to answer in a way that was in line with both the social model of disability and the settin: science class. This wasn’t an intimate conversation with a friend where I could speak anecdotally or philosophically for half an hour about my thoughts on the subject. This was a good question that I wasn’t ready to answer ...

Down Syndrome Superpowers

Lauren Smith-Donohoe,  Disability Justice

22 February 2017

... (Dr Brian) Skotko is a leading researcher in this field and wants to give families accurate information.

He said about 125 expecting parents in Massachusetts each year decide to terminate after learning their child would be born with Down Syndrome. About 94 children are born in the state annually who have with Down syndrome.
"Down syndrome today is not Down syndrome yesterday. And that's not because the genetics has changed at all. It's because our society has changed," he said ...

MGH doctor working to dispel Down syndrome myths

Fox 25 Boston, 22 February 2017

... Brilliantly directed by Israeli filmmaker Yonatan Nir, the genesis of the project began with co-producer Enosh Cassel, who eventually initiated the concept. He wanted to get closer to his brother Hannan, who has Down syndrome, and decided to take him on a journey to Nepal. On his return to Israel, he was contacted by other families with Down syndrome siblings who wanted to have the same experience. Eventually, plans were formulated for a group of siblings – Down and their non-Down brother or sister – to embark on a two-week trek through the Himalayas. That unbelievable experience became this extraordinary film ...

Film review: 'My Hero My Brother' - a tribute to the human spirit'

Beverly Cohn, LA West Media

16 February 16, 2017

• One to watch out for in film festival programs

Weekend reading and viewing: 18 - 19 February 2017

In this clip from BBC Radio 5 live, watch as Polly Gibson retells the story of her ‘love’s dream’ wedding day to husband Joe Minogue. 

The couple, who both have Down's Syndrome married in 2016 in front of 200 friends and family members. 

"WedFest" featured a unicorn throne and singing waiters as well as a three-tiered sprinkle cake. 

“It feels like love’s dream," says Polly. “The best thing in the whole wide world.”

BBC Breakfast, 

14 February 2017 (video 2m 29s)

• This Couple With Down Syndrome Threw The Most Magical Wedding, Huffington Post, 5 January 2016 - more photos of Polly and Joe's wedding.

Being a sibling of someone with physical, mental, or emotional challenges frequently leads to becoming more patient and accepting of differences. As a result, siblings of children with disabilities are often more empathetic and kind. But they may also have other emotions when their sibling needs extra time and attention from their parents. Sometimes, a typical sibling may feel embarrassed by their brother or sister’s appearance or behavior. They may even feel guilty, isolated, and worry about their sibling’s future ...

How to parent equally when one of your children has a disability

Pacer Center on Babble.com 

10 February 2017

... ‘This is me’ was produced for our 10th anniversary and is a celebration of our children’s achievements. The sentiment of the film is positivity, opportunity, hope and aspiration. Our ambition is that the viewer will look beyond any outdated DS labels and start to see children who have Down syndrome as individuals, each making a valued contribution to their communities. The film clearly demonstrates the individuality, unique character and personal achievements of each of the children as well as reflecting their hopes and dreams ...

This is me (video 5m)

PSDS, October 2016

"I told my brother that if his child is like me, it's okay to abort," said Pete, shocking me into next Tuesday ...

I'm pro-choice, but abortion can't be the only 

'sensible' option when it comes to disability

Naomi Chainey, Daily Life

15 February 2017

The Council is partnering with national learning disability charity Mencap to explore prenatal genetic screening with people with Down’s syndrome. The views gathered will inform the Council’s forthcoming report on non-invasive prenatal testing (NIPT). 

Some of the genetic variations that NIPT can test for are associated with a learning disability, such as Down’s syndrome. Though people with these variations have an important interest in the debate on NIPT, their views often go unheard. The Council and Mencap have commissioned Dr Barbara Barter (Clinical Psychologist) to carry out a series of one-to-one interviews with people with Down’s syndrome over the coming weeks. People taking part have been recruited with the support of advocacy and campaigning organisations across England ...

Hearing people with Down’s syndrome’s views on prenatal screening

Nuffield Council on Bioethics, 1 December 2016

People with Down syndrome on Humans of New York

Popular Facebook page, Humans of New York, has been posting from Argentina over the last week. On 10 February a post featured a young man with Down syndrome, and his mother, and generated many positive responses from other families with lots of photos, potentially reaching a very large international audience.

Weekend reading and viewing: 4 - 5 February 2017

Studies suggest as special needs parents we’re more likely to struggle with mental health issues, yet this is something that is really hard to talk about. Nobody wants to be the one dealing with depression, anxiety, or trauma, but we do. This is a conversation we need to have. Sometimes we need help. Sometimes we need to know that we are not alone, and other people struggle too ...

Mental Health Issues In Special Needs Parents (Podcast)

Ellen Stumbo

29 January 2017

In New Delhi, India a baby received multiple injections of human embryonic stem cells as an experimental treatment for Down syndrome. Any ethical issues here?

They are legion ...

Experimental embryonic stem cell “treatment” for Down syndrome

–any ethical issues here?

Mark Leach, Down Syndrome Prenatal Testing

25 January 2017

... Learning to Drive is not, on the face of it, about learning to drive. At first it appears to be, as Michael (Connor Long) has shown an obvious desire to drive since he was a toddler, as the opening ‘home cinema’ shots show us. But he seems to be thwarted by people assuming that, as a twenty-year old man with Down Syndrome, he is incompetent to do so ...

Learning to Drive – a road movie with a difference 

Alison Wilde, Disability Arts Online

I was recently invited to speak to a room of commissioners for services for people with learning disabilities in England. This is a pretty rare event for me these days and so I was keen to make the most of the opportunity.I called my talk ‘Who Put Out the Fire?’ and I wanted to talk about why there no longer seems to be any significant passion or momentum for inclusion or for further deinstitutionalisation. I do not mean that nobody is doing good work. As ever, there are brilliant people doing wonderful things across our communities. But overall the passion that used to exist to bring about positive change has evaporated. In fact, in some places, we see things going into reverse. 

We are at a moment of change ...

Living in the ghetto

Simon Duffy

19 January 2017

The Indiana Governor's Council for People with Disabilities marks Disability Awareness Month throughout March.

... The 2017 Disability Awareness month campaign theme is "I'm Not Your Inspiration." Often, people with disabilities who are successful, athletic, employed or simply good neighbors are put in the spotlight as inspiration to others. This year's campaign theme emphasizes that people with disabilities are people first - people who want to be fully included in their communities, just like everyone else ...

This is one of a series of posters, and other artwork supporting the theme. The campaign is local, but the message is universal.