Weekend reading and viewing: 17 - 18 December 2016

Michael Berube: The Value and the Virtue of Raising a Child with Down Syndrome, (Audio 33m)
Lindsay Beyerstein, Point of Inquiry, 5 December 2016

... Berube tackles the misconceptions about intellectual disability from the perspectives of both a scholar of disabilities and that of a father. He challenges the misconception that intellectual disability detracts from the value of a life, as exemplified by his son Jamie, who Berube describes as witty, inquisitive, and full of a love for life. Berube asserts that like most children, when given ample amounts of love and attention, kids with Down syndrome have the best fighting chance at meeting their full potential and living a successful, happy life. Berube calls upon bioethicists, politicians, philosophers, and all of us to rethink how we approach disability, and advocates for changes that will move us towards a more inclusive society ...

Julius a model example of celebrated diversity

Amanda Keenan, The West Australian, 13 December 2016
A few episodes of Sesame Street and a benign blue box of nappies. That wasn’t everything but it was the beginning of something.

Catia Malaquias was at home with her baby boy Julius and eldest daughter Laura. What Sesame Street had that the nappy box didn’t was suddenly glaringly, infuriatingly apparent. The cheerful kid with Down syndrome reciting his ABCs in the brownstone-lined land of Sesame Street resonated with Catia in a way that the toddler on the nappy box — the child on the baby food jar, the family in the cereal ad — couldn’t possibly ...

Bonding In A Checkout Line

Erika Lantz, WBUR-FM Boston NPR 6 December 2016

... Right away, Sydney said, “She has Down syndrome. She has a big heart, like I do.” Suzie pushed the cart toward Sydney, and Sydney wrapped her in a hug. Then Sydney asked if Carly knew any sign language, and before long they were swapping different signs ...

Could this 81-year-old be the oldest person living with Down's syndrome?

Holly O'Flinn, Lincolnshire Live, 8 December 2016
A woman with Down's syndrome from Mablethorpe, who has just celebrate her 81st birthday, has defied all the odds - because doctors said she wouldn't live beyond 20.

Julia Pittaway, who was born in 1935, is believed to be the oldest woman in the world with Down's syndrome as she hits the grand age of 81 ...

Recreating Down Syndrome in Mice (audio: 12m 16 s)

Witness, BBC World Service, 9 December 2016
In 2005 British scientist Elizabeth Fisher and a colleague successfully transplanted a human chromosome into a mouse for the first time. It transformed medical research into the genetic condition Down Syndromethat affects millions of people worldwide. Professor Fisher tells Louise Hidalgo about the challenges researchers faced and their thirteen-year struggle to create the first Down Syndrome mouse ...

This Man Called His Little Brother With Down Syndrome The‘Perfect Mirror'

Kat Abianac, Parker Myles, 8 December 2016

6 years ago, Tyler Klefot’s brother entered the world in Louisville, Kentucky. He discovered he was a life-changing little guy. And the more he thought about it, the more he wanted people to know what he now knows. Then this big brother decided to share his thoughts about the last 6 years, on his Facebook page. Tyler wanted others to know that the more time he spent with Jonah, he discovered a secret ... His brother is his teacher. And he explains here exactly why ...

My Brother Is Disabled But He’s Not A Sob Story

Anne Suslak, Buzz Feed, 8 December 2016
We may have missed out on a traditional sibling relationship, but my twin brother’s cerebral palsy, hydrocephalus, and epilepsy has far from ruined our lives ...

A World that Wants Me In It': The Case for Conserving Disability

Rosemarie Garland-Thomson, ABC Religion and Ethics, 1 December 2016

... Arendt's and Hubbard's ethical assertions address the central question of my current scholarly project: why disabled people should be in the world ...

Worlds are spaces, complex material environments made up of people, the material artefacts we make and use, the geological habitat and other living things ranging from forests to viruses. Our lives occur in these spaces; how we think and what we do shapes them.Disability offers a good case study for investigating current and future world building. Modern cultures are now undertaking two contradictory world-building initiatives that are expressed in social, legislative, material, cultural and attitudinal practices ...

Weekend reading and viewing: 10 - 11 December 2016

If you are in Dubbo this Christmas, look up! The Western NSW
city is decorated with flags, and Emily Gardner is proud and
thrilled to be one of the festive faces on Main Street. She is
pictured with Michael Kneipp, the Western Plains Regional
Council Administration, and her mum, Cassie Gardner.

‘Liz Never Needed Fixing. Her Difference Simply Needed a Home’

Al Etmanski, The Tyee, 3 December 2016

“My name is Liz and I have Down syndrome." She strode onto the stage without notes, without preparation, and seemingly without a care. A hundred pairs of eyes were anticipating her spoken word poetry performance. A recipe for disaster. A disaster that I had tried to prevent from the moment she was born. It was the scene of my undoing ...

Disability day: When he struggled with words, Kayah Guenther danced
Thea Halpin, ABC News, 2 December 2016
Kayah Guenther has difficulty communicating verbally, but he has no trouble getting across a powerful message. For several years he has been using dance as a form of expression and communication — one that transcends language and overcomes barriers placed by disability ...

Shifting Great Expectations: Parenting a child with Down Syndrome (video 10m 11s)

Lito Ramirez, TEDxColumbus, 5 December 2016

... explores the changing nature of expectations we have for our children, especially when they are born profoundly different than you expect ...



The Other Option

Dave Hingsburger, Of Battered Aspect, 1 December 2016

... it's easy isn't it, to just subtly, and without meaning to, and certainly without malice, simply take control of another's life. And it's easy for people with disabilities to get used to riding the passenger seat as they journey from year to year ...

Sunday Brunch with Jess Tattersall

Simon Marnie ABC 702, 4 December 2016 (Segment starts at 1h 54m)

A delightful interview with Jess Tattersal has Asperger's syndrome and intellectual disability by one of her ABC colleagues, Simon Marnie, to mark International Day for People with Disability.

Can we learn to live with disability? 40 min audio 
Waleed Aly and Scott Stephens, The Minefield, ABC RN, 1 December 2016

'While we are obliged to extend a certain dignity to those who live with a disability, we would prefer that they did not exist to begin with.'

• You can view the short video Dear Future Mom discussed in this program in this post, and a summary of the Minefield  discussion is here.

Weekend reading and viewing: 3 - 4 December 2016

Monopoly
Lizzy Leggat, DSA (UK) Journal #133, Spring/Summer 2016
When I’m asked what it was like growing up with a sister who has Down’s syndrome, I have often directed people to Emily Pearl Kingsley’s piece ‘Welcome to Holland’, which delivers a very nice analogy from a parent’s perspective. However, as time goes on I realise that it does not detail a sibling’s experience and that there may, therefore, be a gap in the metaphorical market for a piece that does ...

• There are more excellent articles in this issue of the DSA Journal, and back issues can be downloaded here.

Self talk
Adult Down Syndrome Clinic, posted on Facebook, 20 November 2016
People with Down syndrome frequently talk to themselves.  We have long believed that for our patients this was a method of learning, a coping strategy, a method of amusement when bored, developmentally appropriate and/or other functions.  Uses and benefits are being recognized in those without Down syndrome as well.  This article below shared by Dr. Dominiak reports some interesting findings:

It turns out – people who talk to themselves aren’t crazy, they’re geniusesGrayson Berman, Sharably, 6 September 2016
Studies show that talking to yourself can make you learn more quickly, think more efficiently, and boost long term memory ... Many experts and studies have actually done research in order to see how talking to yourself helps. Here’s the top five ways, all backed up by science ...

• For or more information on self talk in people with Down syndrome, look under Mental Health on the Adult Down Syndrome Center's web page.

A Father’s Speech to the Diocese of Providence 
Kevin Alviti, Down Syndrome News, Vol 39, #2, Summer 2016

... The greatest gift that my wife ever gave me was the ability to process this news on my own, at my own pace. Not once during this process did my wife say to me, “I am going to have this baby with or without you”  ...

• Down Syndrome News is the newsletter of the (US) National Down Syndrome Congress, published quarterly. Back issues are available from the National Down Syndrome Congress website.

The Pressure Of Perfection Shouldn't Apply To Children

Rachel Wong, Huffungton Post (Australian ed), 1 December 2016

Doctors shouldn't talk in worst case scenarios to mothers of children with Down syndrome. We are all for diversity these days, are we not? Identity is sacred and inclusiveness is the official word on people with disabilities. So why is every effort being made to eliminate certain people with a difference before they are born?

Doctor Notes: Stop portraying childhood disability as tragic or inspirational

Barbara Gibson, Toronto Star, 28 November 2016
By actually listening to disabled people, we realize they are “disabled by” their worlds more than by their bodily differences ...

Digby Webster and Nathan Basha screened their film Heartbreak and Beauty at a special event put on by The Guardianship Division of the NSW Department of Justice, in celebration of International Day of People with Disabilities. 

A very cool crowd included Screen NSW's Courtney Gibson (CEO) and Tracey Corbin-Matchett. Digby and Nathan did a great job answering questions on a panel and advocating for people with disabilities.

Heartbreak and Beauty was made by Bus Stop Films, who also provided the opportunity to present it at the Guardianship Division.

Photo used with the permission of Bus Stop Films.

Weekend reading and viewing: 26 - 27 November 2016

To speak out, people with intellectual disability need to see other people with intellectual disability using their voice ...

To support participation of people with Down syndrome you need to give them time - to plan, prepare and grow into work ...

Michael Sullivan, 

Down Syndrome Australia AGM

November 2016, Darwin

Catalyst 2016 
Accessible Arts, 16 November 2016 

The Catalyst Dance Residency was a national artist development program across 2015 and 2016 supporting 14 dance practitioners with and without disability who demonstrated commitment to integrated dance practice.

The program comprised a 7-day Skills and Career Development Residency in year one held at Carriageworks and a 6-day Choreographic Research Lab Residency in year two held at Critical Path.

Full information on the program can be found on the Accessible Arts website, here.

IDFA Film Review: ‘The Grown-Ups’

Guy Lodge, Variety, 22 November 2016
Maite Alberdi's sensitive, good-humored study of Down's Syndrome adults expresses anger against the system with a light touch ...Though Alberdi’s short, audience-friendly film offers plenty of sweetness and light observational humor, the sad anger of its message still burns through; international distribution, particularly on VOD platforms, is quite feasible ... One to look for on the festival circuit.

Recommended online periodicals
Joan Medlen (dietician and wellness coach, author of the Down Syndrome Nutrition Handbook) recommends the latest issue of the online newsletter Impact published by the Institute on Community Integration at the University of Minnesota - a feature issue on Person-Centered Positive Supports and People with Intellectual and Developmental Disabilities.

'This new issue in the redesigned Impact series shares articles from around the country that profile exemplary strategies for delivery of services; educate about the guiding principles and choices that must be examined in policy and practice; and tell personal stories of the difference that person-centered positive supports make for people', Editorial.

• Web page and back issues

Hand in Hand, the newsletter of the Down Syndrome Research Foundation in Vancouver, is published four times per year in March, June, September and December. 

• Web page and back issues
• Current issue (Fall 2016)

Opening doors for students with disability
Every Australian Counts, 10 November 2016

A program at Sydney University is giving young people with intellectual disabilities the opportunity to experience life as a uni student ...

Weekend reading and viewing: 19 - 20 November 2016

How Viral Videos Shape Perceptions of People With Down Syndrome
Theresa Versaci, The Mighty, 10 November 2016
... The average person’s understanding of Down syndrome spans the depth of a single unit of course content, but more concerning to me is another means through which people are exposed to Down syndrome: the viral video ... The “Cuteness Factor” serves as click bait, drawing the person into these stories and videos ...

Down Syndrome: This is the Reason Preconceptions are Unfortunate

Arthur Lauretano, 30 October 2016
The medical record perplexed me. “Unfortunate 33-year-old-man with Down Syndrome here for routine visit for ear wax removal.” ... He brought in an envelope full of records from his prior ear, nose, and throat doctor. Each visit was documented with an entry that began with, “Unfortunate 33-year-old man with Down Syndrome.” ... All of this patient’s records described him as unfortunate ... But the patient sitting in front of me ... was in excellent shape ...

We are all equal

Paul Critchlow,  Orange Juice Flavour Sky, 30 October 2016

There has been much written and said about Down’s syndrome over the last month or so leading up to, and since, Sally Phillips’ documentary A World without Down’s Syndrome. Some of what I’ve read has been balanced and fair, recognising that the discussion Sally has started is not an easy one for some to join in but some of what has been printed has been defensive knee-jerk reactionary nonsense from some people who should know better ...

France's censorship of award winning World Down Syndrome Day video to be chhllenged in the European Court of Human Rights
Catia Malaquias, Starting With Julius, 12 November 2016
France’s Conseil D’Etat has upheld the decision of France’s television regulator to censor the video “Dear Future Mom” and stop it from being shown on French television ... A French Down syndrome organisation, Fondation Jerome Lejeune, which brought the action against France’s television regulator and was a partner in the video campaign has said in a media release that the decision to ban the video from French television was taken after two complaints were received from women who had terminated their pregnancies after being told their babies had Down syndrome. It is reported that the women found the video confronting as the people with Down syndrome in the video were ‘too happy’ ...

Bundaberg disability group kicking down barriers through martial arts
Ross Kay and Brad Marsellos, ABC Wide Bay, 31 October 2016

If you are young, old, even in a wheelchair, a group in Bundaberg in Queensland is working hard to show that martial arts are for everyone by kicking down barriers around disability ...

People with disability underrepresented in politics: advocate

Emily baker, The Age, 11 November 2016
Some political parties are attempting to improve diversity by targeting the representation of women and culturally diverse, Indigenous and LGBTI people.

But Disability Leadership Institute founder Christina Ryan says one group – Australia's largest minority – is consistently missing from the conversation ...

Weekend reading and viewing: 12 - 13 November 2016

Down syndrome answers

Canadian Down Syndrome Society, November 2016

The best people to answer questions about Down syndrome are people with Down syndrome. We found the most-asked questions on Google and asked 10 Canadians with Down syndrome to give their answers.

• 38 questions answered by the experts, on video

• This Powerful Campaign Has Answers for Parents Googling 'Down Syndrome' - the genetic disorder, explained by those who have it, Gabriel Belt, AdWeek, 1 November 2016

Looking Back on a Down Syndrome Diagnosis 4 Years Later

Dan Sheehan, Medium, 9November 2016
This is a story I have been meaning to tell in full for quite some time, because I too was once in a position on the other side of that screen looking for advice, answers, and some way to make sense of the onslaught of emotions and uncertainty raging through me at the time. Know that this is nobody’s fault, you are not alone, many have been where you are right now, and many will be in the years to come. As of this writing my youngest daughter, Teresa, is four years old (today is her birthday) which has put me on this path for a little over four years now ...

To Myself on the Day My Son Was Diagnosed With Down Syndrome

Nicole DiGiacomo, The Mighty, 7 November 2016
I constantly wish I could go back to that day. Sit down and talk to myself when I first heard the words “Down syndrome.” When the blood test came back, and then the amnio. I remember the gut-wrenching feeling like it happened just this morning ... I write to tell you the real story — what really happens after you get a Down syndrome diagnosis ...

'My Feral Heart' review – life after keeping mum

Wendy Ide, The Guardian (UK), 6 November 2016
A terrific central performance from Steven Brandon, a young man with Down’s syndrome, is the driving force of this heartfelt British independent picture. In a neat reversal of expected roles, Luke (Brandon) has become the care-giver for his prickly but loving mother. However, when she dies, the authorities ignore the fact that he can and does live independently and shunt him into a residential care home. A sequence in a car, in which the camera rests on Luke’s face as he mourns both his lost mother and lost independence, is achingly poignant and beautifully acted ...

• This movie has just been released in cinemas in the UK - we'll be looking out for it to be available here in Australia.

Review: Finding a way' by Graeme Innes
Kevin Bain, Independent Australia, 08 November 2016

This was the election slogan for Tony Clark, a blind candidate for the ALP in the recent federal election. It’s no surprise that lesser-sighted people will use their other senses to greater effect to “find a way” as Graeme Innes AM puts it in his autobiography ... There’s forthright inside commentary here about the personalities and trials of government and politics – the sausage making we call the legislative process – and his aspirations for people with disabilities. The “invisibility cloak” he talks about – where the waiter/shopkeeper/taxi driver talks to the person with him (or his dog!) – is a constant reminder of how silly the rest of us can be, although he observes that sometimes he doesn’t get presented with the bill!

Weekend reading and viewing: 5 - 6 November 2016

Joyous recognition: a lesson from my father
Chesapeake Down Syndrome Parent Group, 30 October 2016

... their quiet insistence, through their actions and words, that this was an occasion for laughter and joy just like any other birth, enabled me to snap out of whatever self-centered sorrow I was in much quicker than I would have on my own. It enabled me to spend those first days meeting my daughter and falling in love with her, because it enabled me to be aware of her diagnosis without it obscuring this actual adorable new little person who was going to call me "daddy" ...

Why is Down syndrome a syndrome?

Mark Leach, Down Syndrome Prenatal Testing, 9 October 2016

... Syndromes, however, are named that because the underlying cause for the condition is unknown. ... In the case of Down syndrome, though, the use of the word “syndrome” is outdated and regrettable.It’s outdated because the cause of the condition described by the characteristics of the syndrome has been known since the 1950’s. Down syndrome is not caused by the individuals having intellectual disability, a penchant for mimicry, or a single crease across the palm. It’s caused by an extra copy of the 21st Chromosome, most commonly Trisomy 21 ...

Inclusion: Hard Work or Magic Pill?

thesassysoutherngal, 25 October 2016

... The lack of meaningful inclusion extends past the education setting though. Beyond the walls of school the first place many parents of children with disabilities are directed is to segregated choirs, sports and church activities. Many of you would join me in sharing stories of the hurts and challenges of mainstream community activities and church. It would be easier to go another route. So if you are looking for easy, there is probably an easier path. However, I haven’t found a magic pill or magic carpet yet ...

Jamie’s place

Michael Bérubé, Aeon, 1 November 2016
Like any adult, my son wants to work, travel and socialise, and his Down syndrome won’t stop him. But can he live independently?

• This essay is expanded upon in Michael Bérubé's new book, Life as Jamie Knows It.

To the Special Needs Mother: this was you all along

Kat Abianac (guest blogger), mummalove, 30 October 2016
... of course Parker changed my life. That’s a bona fide understatement. He came charging in that day in the delivery room, turned me on my head and flipped out my pockets. He laid bare every one of my emotions, forcing me to carefully evaluate and analyse myself. He didn’t do any of this personally – he was an infant. And this is where people misunderstand the rainbows and unicorns of legend ...

StarJam video of flashmob performing Gaga's 'Born this way'

StarJammersNZ, Published 8 August 2012
The Jammers spring a surprise with a flashmob version of Lady Gaga's Born This Way.

Weekend reading and viewing: 29 - 30 October 2016

My non-verbal son communicates through ‘Hamilton’

David Perry, Washington Post, 21 October 2016

“Awesome! Wow!”  It’s 6:45 a.m. on a Tuesday as these words float across the dining room table. My daughter has already finished eating, but my son, Nico, is happily listening to music while consuming an enormous bowl of Cheerios. As usual, he’s set the iPad to “Hamilton.”

My son is what professionals call “functionally nonverbal.” He can talk. He does so all the time. But you, and to some extent I, cannot consistently understand him. He has Down syndrome, and like many people with the genetic condition, his language development is generally delayed. More specifically, though, Nico also has apraxia ...

How I Got a ‘B’ in Homeschooling

Kari Wagner-Peck, A Typical Son, 26 October 2016
To be completely honest I gave myself the B. That said, we don’t actually use grades here.

Thorin and I started our 3rd year of homeschooling/unschooling* on September 3rd. Of course we learn all year long but given classes outside of the home and my schedule we do follow a more structured schedule between September and May.

I have learned eight essentials for me to be an averagely successful unschooler ...

When People Give Me ‘the Look’ After I Tell Them My Daughter Has Down Syndrome

Pepper Caruso, The Mighty, 12 October 2016

There it was again — that look. I’m sure most parents of children with special needs know “the look.” It’s the expression that conveys pity. The tight lips and furrowed brow clearly say, “You poor thing. I’m so sorry you’ve been saddled with this burden.”

... Now, 30 years later, the national consciousness regarding people with special needs has been raised and Americans are more aware. Yet, mentioning my daughter’s Down syndrome to someone new is still occasionally met with the look. I meet people regularly during my work as a background actor, and inevitably, we have down time during which we sit and wait and chat. I’ve noticed if the subject turns to our children, I’m mentioning my oldest less and less ...

A Boy, His Mom and The Truth

Dae Hingsburger, Of Battered Aspect, 7 October 2016

... He pointed at me, he knew I saw him, he didn't care, he was angry at his mom. "You were staring at him. You were. You were STARING." ...

NSW Council on Intellectual Disability e-News, October 2016

• CID Annual General Meeting
• Going to hospital; share your experience for research
• Guest blog article
• NSW CID conference video
• Reasonable adjustment for university
• Positive Cardiometabolic Health
• NSW Disability Innovation Awards
• Mental health and intellectual disability
• Get More Skills: Hands On
• Research
• Events and professional development
• Resources

Weekend reading and viewing: 22 - 23 October 2016

5 Tips On Having A Child With Down Syndrome
Meriah Nichols, 14 October 2016
... welcoming the presence of Down syndrome into our lives, as expressed by our daughter Moxie, was not easy for us. For myself as a person with a disability, it was particularly difficult, because I was making the choice to bring her into the world, knowing full well that she would be facing discrimination and prejudice, much along the same lines that I have.

We are 6 years into this now, and while much of the initial angst feels silly to me now, we have learned some things that might be useful to other families ...

Living in the shadow of disability
Bill O'Chee, Sydney Morning Herald, 19 October 2016
In Australia in the 21st century, people with disabilities occupy a strange liminal world, at once accepted and ostracised. We have made enormous steps as a society when it comes to people with disabilities; we have given them financial support, anti-discrimination legislation, and even the opportunity to participate in sport. However we seem reluctant to give them our friendship ...

Are we sleepwalking into a world without Down Syndrome?
Tessa Prebble, The Spin-Off, October 11, 2016
Many parents make the reasonable decision to terminate their pregnancy following an in utero diagnosis of Down Syndrome. But as more sophisticated tests make it easier and less risky to diagnose early, Tessa Prebble wonders whether we’ve really thought through the consequences ...

I Thought Having A Child With Down’s Syndrome Would Ruin My Life

Lucienne Cooper, Redonline, 13 October 2016

... Nearly seven years on, Billy has confounded my expectations in the most remarkable and enchanting ways. Far from ruining my life, he has filled it with meaning and joy. He is nothing like the burden I'd feared, but is a loving little boy; cheeky, fun loving and mischievous, who adores his big brother ...

A message from Heidi

The Diary of a Not So Ordinary Boy, 15 October 2016
As you know, one if the things that is important to me is to listen to and amplify the voices of the unheard. So, with that in mind, I am proud to host this blog from Heidi, who has Down’s syndrome and doesn’t have her own blog (yet!).

Hi I am Heidi and I am 21 and I have down’s syndrome which is an extra chromosome and I find that some people are very negative towards people with Down’s syndrome because they don’t understand it and think that we are not equal. 

The things people are saying are making me cry because people don’t value us like they should ...

The murder of disabled children is often excused.
Carly Findlay, 18 October 2016
Warning: This post contains content about violence, murder and suicide related to disability.
I've been struggling reading about the alleged murder-suicide that happened in Sydney earlier this week.
... It's a tragedy too awful to comprehend. The wider disability community is hurting too. This needs to be talked about. And I have tried to write this as respectfully as possible. If this case does relate to the stress disability has on a family, then ...

Weekend Reading and viewing: 15 - 16 October 2016

On the moral questions of Down syndrome
Kieron Smith, Medium, 8 October 2016
I try, when writing about things which could be construed as being informed by personal experience, to make sure that I take as an objective and balanced position as possible ... Using secondary research to back up assertions and philosophical work by people, much deeper thinkers than I could ever be, I attempt to explore the bigger questions of humanity and morality. In this I may or may not succeed. ever be, I attempt to explore the bigger questions of humanity and morality. In this I may or may not succeed ...

Down syndrome testing results delivery to change nationally following Tasmanian complaint

Sallese Gibson, ABC News, 9 October 2016

The results of prenatal testing for Down syndrome will be delivered differently, to ensure women are not swayed to terminate their pregnancies ...

My brother has Down’s syndrome. I wouldn’t change him for the world
Oliver Shone, The Guardian, 7 October 2016
I understand the desire to eradicate Down’s syndrome, but it’s sad to imagine life without these precious children and adults who bring such light into their families’ lives ...

The day Aunt Nigella rolled up her sleeves for a good cause

Rosa Monckton, The Telegraph (UK), 12 October 2016

... Domenica was at her best self at Brighton City College, where she did a two-year catering course for people with learning disabilities. An avid follower of her Aunt Nigella’s food programmes, she always enjoyed cooking and we chose the college together ...

Down’s Syndrome: A Disaster?

Emily Beckloff, Huffington Post, 9 October 2016
There are many, many families living in a way you perceive to be a nightmare.
... Families adapt and are genuinely and properly enjoying life. They’re not pretending to, or saying so for your sake, nor to convince you …

A World Without Down's Syndrome? 

BBC, 7 October 2016 (on You Tube, 56m 48s)

Documentary about Down's syndrome and the ethics of pregnancy screening, fronted by Sally Phillips. This film explores the science and thinking around the proposed new screening test for Down's syndrome and its possible availability on the UK National Health Service.

Weekend reading and viewing: 8 - 9 October 2016

Tough Love
Australia Story, ABC TV, 3 October 2016 (30 m)
Available on ABC iview until 8.30pm 18 October 2016

On my soapbox: Marriage and pre-natal testing

Alex McAuley The Life That Max Built, 6 October 2016

In Australia, a young couple with Down syndrome has recently been the subject of 'Australian Story', an excellent television program that broadcasts documentaries of ‘ordinary’ Australians living ‘extraordinary’ lives ... In the UK, a medical breakthrough in pre-natal testing has stimulated debate on the subject of termination of foetuses with Down syndrome (DS) ...

Both of these subjects are controversial, complex and very close to my heart. Max is in a long term relationship (more than three years) with his delightful girlfriend – who also has DS – and they, too, want to get married. Max adores children, and has said he would love to have babies of his own ...

Couples with Down syndrome don't need to be sterilised, they need support

Claire Pullen, Sydney Morning Herald, 6 October 2016
One good thing about moving out of home at 20 was ending the excruciatingly awkward parental interactions about sex, and boyfriend-sleepovers, and having to hear my parents' views on the above (firmly against).

Luckily for me, though, one thing they never did was go on national television to speculate about how to have me sterilised ...

People with a disability don't need to be sterilised. They need to be supported
Naomi Chainey, The Feed (SBS), 6 October 2016

... Like Michael and Taylor however, I have a disability which would impact considerably on my ability to adhere to societal parenting norms. No doubt if I popped one out, I’d need a lot of help from my family. I might even turn to my local council or the NDIS for whatever support was available. No one would question it much, because unlike Michael and Taylor, I am not infantilised. My reproductive freedom is not inhibited by double standards.

The pervasive idea that people with Down Syndrome are children in adult bodies needs to go. Adults with intellectual disabilities are adults, grappling with all the same emotional and sexual needs the rest of us are dealing with, and with all the same inherent rights the rest of us hold ...

An Unexpected Motherhood – the story of a woman with Down syndrome who has a child of her own

Leticia Keightly, Embracing Wade, 3 October 2016

Times are changing rapidly for people with Down syndrome as every year more and more parents are encouraged to have high expectations for their children and presume competence for their abilities. Despite this, it is still mostly assumed that people with Down syndrome are unable to have children of their own. Many parents have been told that males with Down syndrome are generally sterile or their fertility is so low that they cannot conceive. There are often concerns that the person will not have the capacity either mentally or physically for parenthood. As a result, there are controversial discussions around the rights of people with a disability to make their own informed choices about the control they have over their lives and bodies versus the parent’s need to protect their children from circumstances that may harm them ...

• Down Syndrome Australia Statement on Australian Story, 3 October 2016
• Down Syndrome Australia calls for better information to support new pre-natal testing

They're Not All Like Her You Know...
Hayley Goleniowska, Huffington Post, 3 October 2016

No-one has ever once said to me that not all 12 year olds are like our eldest daughter. She's exceptional and unique in ways that make us brim with pride as most parents do about their offspring ... Now, our 12 year old has a younger sister. She has her own strengths that we are proud to celebrate. She's hilariously funny with a dry wit that can dissolve a room into giggles in seconds ...
She also has an extra chromosome. And for some reason this leads people to say, "Ah, but they're not all like her you know." They say it a lot.

But Think About the Siblings. (Don’t Pity Us)

Becky Saunders, The Sussex Girl, 4 October 2016
... We know and understand her needs, we know how she ticks, what she loves to do. We’ve seen her at her happiest and at her most sad. We’ve watched her perform on stage and we’ve celebrated exam success. We’ve helped nurse her and we’ve been nursed by her. She’s our sister and she brings strength, light and colour to our lives. Don’t you dare call her a burden ...

Weekend reading and viewing: 1 - 2 October 2016

Australian Story: ABC TV, 8 pm Monday 3 October 2016

When Michael Cox and Taylor Anderton, became an item, their parents were delighted their adult children, who both have Down syndrome, had found love.

But when the couple, both in their early 20s, started talking about weddings and babies, their parents became alarmed ... (Australian Story)



My Heart Can’t Even Believe It: A Conversation with Author, Amy Silverman

Kari Wagner-Peck, Huffington Post, 30 September 2016

Amy Silverman is a journalist and blogger I have long respected. We are kindred spirits in that we both write about our children who have Down syndrome for readers that include people who don’t. We have also both written books about our experiences ...

Sally Phillips: My son has Down's syndrome - but I wouldn't want to live in a world without it

Elizabeth Day, The Telegraph (UK), 29 September 2016

... Phillips also has a serious side. Next week, the BBC will air a one-hour documentary which she presented and co-wrote, entitled A World Without Down’s Syndrome? The programme examines the issues around Down’s Syndrome with intellectual rigour but is also extremely moving, largely because of Phillips herself who made the decision to include Olly in the film. He emerges as a chatty, engaging and kind little boy who often has his younger siblings, Luke, nine, and Tom, four, in hysterics ...

• BBC post about the documentary 

• You can view a  BBC interview with Sally Phillips (by Frank Skinner) via the Don't Screen Us Out Facebook page, dated 23 September 2016 (we cannot view from BBC page from outside UK)

• We will be watching for the documentary on Australian TV - let us know if you spot it in a TV guide.

Putting kids with special needs in ads isn't just about making moms feel good

Maureen Wallace, She Knows, 19 September 2016

... My son has Down syndrome, and seeing diversity in advertising fills my heart as much as it empties my wallet. But while companies that practice diversity in advertising may be driven by sales, the social benefits are life-changing.

My child needs to see himself reflected in the world, and the world needs to see my son and people who share his differences reflected in the barrage of images hitting us daily ...

Spotlight on non-invasive prenatal testing
Chris Kaposy, Impact Ethics, 8 September 2016
... Canada should learn from the United States’ failure to regulate the industry for Non-Invasive Prenatal Testing ...

Weekend reading and viewing: 24 - 25 September 2016

Baby Dylan 
Attitude Live, 28 March 2010 (24m 42s)
We present an intimate story of one couple welcoming a newborn with Down syndrome into their family.



Stockton: A Time for Change

CDAH (Community Disability Alliance Hunter), 13 September 2016
Leigh Creighton is a peer mentor and advocate from Newcastle, NSW. In this video, Leigh interviews Steven, Sandra and Robert who live at the Stockton Centre, about their plans for the future. Leigh also interviews Robert Strike, a leading advocate in this country who heads up Self-Advocacy Sydney. Leigh hopes this video will motivate us all to make our communities more inclusive.

Our parliament is one of the most diverse yet, but it's time for a politician with a disability
Graeme Innes, The Guardian, 22 September 2016

... Why do we need representation? Australians with disabilities, 4.5 million of us, are employed at a rate 30% lower than the general population, and 45% of us live in or near poverty. Our educational outcomes, measured by high school completion, are half those of the general population ...

How to talk to your children about my child

5 Boys and 1 Girl Make 6, 22 September 2016
... Give them the information they want and need at that moment. The rest is not important because it is unknown. No one can tell you right now who Grace will grow up to be. No one has any idea what her dreams and aspirations will be in high school. No one knows if as an adult she will live happily with her husband or at home with her Dad and I ... Please don’t think that because our child was born with a disability that we have given up on her future, because that is the furthest from the truth. We are working diligently every day to over come the set backs that she was born with ...

The Danger of Assumptions and the Importance of Awareness

Adam's Notepad, 16 September 2016
... What surprised me was the number of websites dedicated to not only educating people on what it is, but also on raising awareness of it ... What I did not realize is that being aware that Down Syndrome is a thing is quite different from understanding it. And even if someone understands the genetic ins and outs of Trisomy 21, they may not understand what it means to have Down Syndrome, or how important individuals with it are to the world ...

Weekend reading and viewing: 17 - 18 September 2016

'He was sitting there reading his book': Rescuers share joyful moment missing boy found

Cameron Baud, Yahoo7, 14 September 2016

Two men who were among hundreds of volunteers searching for missing Victorian boy Ben Dean have described the joyful moment they found the six-year-old reading his book in the bush ...

A Letter to Myself on the Day I Found Out My Daughter Has Down Syndrome
Amy Silverman, Seleni, 9 September 2016
When my newborn daughter was diagnosed with Down syndrome, I had no idea what to expect. I was sure of just one thing: My life was over. Ditto for my husband and our older daughter. I was completely lost, and it took me years to find my way. Looking back, the cliché "if I'd only known then what I know now…" resonates more than I would have thought possible. That realization prompted me to write a letter to my 36-year-old self – that scared woman with a tiny baby and a lot to learn. Now standing on the brink of 50, I realize I really am older and wiser. And very, very lucky ...

We need to talk about Bella
Daily Dose of Bella, 15 September 2016
... we need to talk about Bella, but we don’t, we really really don’t. We need to talk about the ethical debate around NIPT (non-invasive prenatal testing) and how the results of screening are delivered to parents ...

Dominating The Down Syndrome Swimming World Champs
John Beckworth, Coaching Life, 24 August 2016

... Phoebe is now one of several swimmers in my program who have either Down Syndrome or a physical disability. They are not trained differently – Phoebe is trained with my national squad and is expected to do everything that they do, except in speed of swimming. My coaching style adapts to the needs of the person I’m working with, whether they learn at different rates or in different styles ...

Judge orders civil trial in death of 26-year-old with Down syndrome

Theresa Vargas, Washington Post, 9 September 2016
A federal judge in Maryland ruled Friday that a lawsuit against three Frederick County sheriff’s deputies will move forward to ­trial, allowing a jury to decide whether their actions led to the death of a young man with Down syndrome ...

How labels didn’t stop a family from achieving full inclusion for son with developmental disability
Janice Fialka, Stateside (Michigan Radio), 7 September 2016 (Podcast 14 m 19s)
... (the family) launched themselves on a mission to prove that labels and IQ tests are not true measures of someone's ability to be valuable to the world, to contribute, to learn ...

Weekend reading and viewing: 10 - 11 September 2016

Sixty years of living with Down's syndrome
Debbie Race, DSA (UK) Journal, 133, Spring/Summer 2016
I am writing about my experience of living with a sister and a son, both of whom had and has Down's syndrome ...

• The UK DSA Jounal is published twice a year. It is a rich source of information across a range of topics of interest to familiex everywhere. A number of back issues can be downloaded from the website, here.

The half-truth of the happiness stereotype for my son with Down syndrome

Leticia Keighley, Embracing Wade, 6 September 2016... People with Down syndrome and those who know and love them, will tell you that a lot of the stereotypes do not apply and yet they persist despite that. I have come across a few since Wade was born but the most common by far is the old chestnut…“They’re always so happy!”
I hear it from well-meaning strangers almost weekly. I have perfected my nod-and-smile response mostly because I just don’t have the energy to educate every single person I run into, but also because the response is complicated. There is an element of truth to it but it’s not as cut and dry as it seems

The Beautiful Story Of An Artist With Down Syndrome Who Never Spoke A Word

Priscilla Frank, Huffing Post, 7 September 2016

... Like a wildly wrapped package, the sculptures seem to possess some secret or meaning that can’t be accessed, save for an energy that radiates outward; the mysterious comfort of knowing that something is truly unknowable. 

Judith and Joyce Scott were born on May 1, 1943, in Columbus, Ohio. They were fraternal twins. Judith, however, carried the extra chromosome of Down Syndrome and couldn’t communicate verbally. Only later, when Judith was in her 30s, was she properly diagnosed as deaf. “There are no words, but we need none,” Joyce wrote in her memoir 'Entwined', which tells the confounding story of her and Judith’s life together. “What we love is the comfort of sitting with our bodies near enough to touch.” ...

• Entwined, by Joyce Wallace Scott was released 28 June 2016

Trusting your instincts

Nancy Goodfellow, (US) National Association for Down Syndrome (NADS) News, July 2016

... There are times when we need to concede to the professionals regarding our children, but there are times when we need to trust to our instincts. Lily's Social Studies placement was a good example of when I should have remembered that I am the expert when it comes to my child ...

Beth thought she had no money. But she did.
Miki Perkins, Sydney Morning Herald, 3 September 2016

... Before, when she wanted to dye her hair, go to movies, or get a massage, Beth was told she couldn't afford it, that she didn't have money, she says. But actually, she did ...

When the barriers aren't just physical

Joy Stein, New York Times, 2 September 2016
... I realized that there were other barriers to his full participation unrelated to the physical plant. The only sustained interactions between the children in the two special education classrooms and the rest of the school occurred when older students served as “buddies” to children in special education via weekly half-hour play sessions. Besides his six classmates, only one of whom he befriended, my son had no opportunities to interact with other children his age in school ...

National Carers Week 2016 - promotional video

National Carers Week 2016 website

Weekend reading and viewing: 3 - 4 September 2016

Kill-Off - trailer
Bus Stop Films, 31 August 2016
The official trailer for the short film Kill Off, starring Jamie Brewer, Abby Earl and Mandela Mathia. For more information, check out the Kill-Off website:

Synopsis: A woman with Down syndrome forms an unlikely friendship with a Sudanese refugee through their mutual love of KRUMP. Kill Off is a proof of concept for Bus Stop's first feature film, Baby Cat. A Bus Stop Films production made in association with Sydney Community College and the Flagstaff Group.

32 Years of Challenge Gets You Cake and Stuffies

Dave Hingsburger, Of Battered Aspect, 1 September 2016
... It's an important story, but as often happens her story and the story of her employment has been co opted to tell a different story, a story not about her at all ... The celebration of 32 years of gainful employment of someone with an intellectual disability is a celebration of 32 years of breaking stereotypes, of challenging bias, of demonstrating competence in the face of expectations of failure ...

People With Intellectual Disabilities: Where Are They?

Luca Badetti, Huffington Post (UK - blog), 25 August 2016
... Increased opportunities for inclusion and higher standards of care have been important developments for a greater (and longer) quality of life in persons with intellectual disabilities. The advocacy and disability pride movements have brought some of their voices to a higher level of public dialogue and political engagement. However, they still remain one of the most oppressed cultural minorities in the world. Often living at the margins of society, people with intellectual disabilities are facing rejection and structural segregation, abuse and bullying that might often go unreported, and, as recent political news points out, scorn from those that should care for their best interests ...

Adam moves out
A record of the process of Adam, a young man with autism moving into his own home, in the form of a blog and videos, funded as a RUN project, through My Choice Matters

Uni 2 Beyond: Students with intellectual disabilities given taste of life at University of Sydney

John Stewart, Lateline (ABC TV), 1 September 2016
Walking through the halls of the University of Sydney, talking and laughing with their friends, Nalyn Sirivivatnanon and Henry Szaraz are just like any other students.

They are both participants in the Uni 2 Beyond program, which allows people with intellectual disabilities to attend classes on campus over a two-year period.

• Replay of the segment is embedded  here 
• Lateline 1 September 2016 on ABC iView until 15 September 2016

Weekend reading and viewing: 27 - 28 August 2016

A Glorious Adventure
Paul Critchlow, Orange Juice Flavour Sky, 12 August 2016
Emily was born 24 years ago today, on the twelfth of August 1992. The Glorious Twelfth as it’s known.

What have I learned over the past 24 years?

What advice would I give to a parent whose baby is born today?

What are the things I know now that I wish I knew then?

Smiths Falls mother reaches settlement with Ontario over son's home care

CBC News, 19 August 2016

A Smiths Falls, Ont. mother is celebrating after reaching a human rights settlement with the Ontario government to keep her adult son, who has Down syndrome, living independently after they were told he'd have to move to a long-term care facility ...

Lord Rix was told to put his daughter into a home. Instead, he fought for people like me
Ciara Lawrence, The Guardian, 23 August 2016
When his daughter Shelley was born with Down’s syndrome, Lord Rix was told by a doctor to “put her away in a home, forget about her and start again”. All I could think when I heard this was: what if the doctor had said that about me, or about my friends who have a learning disability?

"It's completely inappropriate": Australian Immigration deporting people with disabilitiesLaura Murphy-Oates, The Feed SBS, 25 August 2016
Last year a Bangladeshi couple, both doctors, had their application for permanent residency denied, after nearly a decade living and working in Melbourne. The reason may surprise you: their son has mild autism ...

The hidden history of eugenics - 4 part radio series

Natasha Mitchell, Earshot (ABC Radio National), 20 July - 11 August 2016

The ugly spectre of eugenics left a dark stain on the 20th Century, with the genocidal quest of the Nazis to breed a 'master race'. But the eugenic agenda reached much further and deeper still—into everyday laws and lives across the Western world—with profound consequences ...

Weekend reading and viewing: 20 - 21 August 2016

An Undimished Life

Chloe Udaly, True Parent, August 2016

Late in my second trimester I was hit with the thought, “What if this baby grows up to be someone I don’t like?”

At the time, my worst fear was that my child would turn out to be a drug addict, a religious zealot, or a Republican. My partner and I didn’t want to know if we were having a boy or a girl. We didn’t pick a name or a color for the nursery in advance. It would all be a surprise. So my first big challenge was to trust that I’d be able to conjure up the kind of unconditional love that parenthood demands. I focused on letting go of my fears and expectations, and told myself that my most important job was to support this person in becoming the best “whomever” they were born to be. It never occurred to me that the course of that life—of all our lives—would be profoundly altered in the moments leading up to birth ...

It wasn't necessary
Dave Hingsburger, Of Battered Aspect, 14 August 2016
... I saw a man with Down syndrome walking, with great purpose, through the mall. He clearly had a destination and he clearly wanted to get there.

That's it. That's all.

Hardly worth a comment, except that it is. Nothing will ever change the fact that I come from a time where that would never have been seen, never imagined and therefore never attempted. I come from a time that he'd not be walking with purpose to a destination he wanted to get to, he'd be shuffling down a hallway with habit and boredom yapping at this feet. I still notice this. I still notice freedom. I hope I always do ...

Why We Chose to Forgo Down’s Syndrome Testing
Kemberlee Kaye, Legal insurrection, 15 August 2016
... Down’s Syndrome is not debilitating, nor does it make those gifted with an extra chromosome any less of a person. Yet despite the trend towards normalization and destigmatization of so many issues, conditions, and challenges, Down’s Syndrome is still viewed as cause and often encouraged as reason to prematurely end pregnancy ...

Annie Gets Her Own Apartment
Annie Niswander (slide show - click on the bottom right corner of each page)
This is the story about how my family and I helped to create the house that I live in and how I get the support I need to live on my own ...

Robert Perske, advocate for Richard Lapointe, others with disabilities, has died

David Owens, Hartford Courant, 15 August 2016

For much of his adult life, Robert Perske worked on behalf of people with developmental disabilities, becoming the voice for many. Over the last 30 years, he worked on behalf of those he believed were wrongly convicted of crimes ...

Weekend reading and viewing: 13 - 14 August 2016

How and Whether It Is Possible to Integrate Without Exclusion?

Rhys Wyn Evans Huffington Post UK (blog), 25 July 2016
... The Girl is very sociable and is liked by quite a few mainstream children. But she is intellectually and physically slower than these mainstream peers. Despite this, she is very aware of what goes on that doesn’t include her.

In recent years, we’ve found that where parents tell their kids that, for this party, they should choose to invite, say, six or eight friends, it is unlikely that - and unusual for - the kids to pick the little girl with DS. (There is little or no ‘side’ behind that statement. It’s simply a factual observation.) Not, I hope, because they are prejudiced against DS but because they have MORE in common with, say, eight mainstream peers ...

Social Sensitivity
Dennis McGuire, UPS for Down Syndrome (Newsletter), April 2014
... Having good social skills and social sensitivity serves people with Down syndrome in many positive ways in their lives. This may help them to make and maintain positive relationships in all key areas: with family at home, with friends in social and recreation settings, with students and teachers in school and educational settings, and with bosses and fellow employees in vocational settings. Although social skills may be a great strength in persons with DS, there can be a major down side to this social sensitivity. We have found that people with DS may be too sensitive to negative feelings and emotions ...

• This article is reprinted, with permission in the current issue of Voice (July 2016) - the journal of Down Syndrome Australia.

Dear The Camp Director Who Insulted My Disabled Brother

The Odyssey Online, 9 August 2016
... you said that the camp "isn't equipped for kids like that." Kids like what? Kids that have Down Syndrome? As I recall, the previous director was more than accepting and willing to work with "kids like that". The school district pays for "kids like that" to attend the community camp so "kids like that" can remain with their peers and aren't excluded. This camp focused on inclusion not just integration ...

The Gl-are And More

Dave Hingsburger, Of Battered Aspect, 7 August 2016

... He needs strategies to deal with that difference. Parents of kids with Down Syndrome and other disabilities are often told to pay no attention to the disability, 'to us he's just a child' ... well that's not who he is to the world. He needs strategies to cope and strategies to protect and strategies to confront and strategies to engage ... with a world that will see his difference first. Let's state it clearly, it's hard to live a "person first" lifestyle in a world that has a "difference first" value system ...

Census Fail Makes Disabled Australians Grin A Bit

Samantha Connor, The Stringer, 10 August 2016

... Whilst social media explodes in Census website-crash outrage, problems with the new government run NDIS portal has halted millions in payments to service providers. It’s been months now, but it’s caused barely a ripple in the media. Social Services minister Christian Porter has announced that there will be a ‘review’.

The portal that we’re talking about collects information that is far more sensitive than that collected by the Census. It’s not just our names and addresses we are talking about – imagine uploading your whole life plan, bank account details, intimate and personal details of your goals, dreams, sexuality, plans for the future ...

Ms. Harrari, is it you that gets to define quality of life?

Tessa Prebble, One in a Million Baby, 8 August 2016

... Maybe (the journalist) Harrari actually wanted to draw attention to the lack of supports and funding for special needs adults in their families. Maybe she wanted to highlight a vulnerable group in society that needs more attention and care? Maybe she wanted to make a real change.

Maybe. But in doing so she reinforced so many dangerous negative stereotypes and assumptions made by those who have no connection to the special needs world. Her article positively dripped with ableist rhetoric ...

• Parenting an intellectually disabled child: life forever on duty, Fiona Harari, Good Weekend, 6 August 2016

Weekend reading and viewing: 6 - 7 August 2016

Things People With Down's Syndrome Are Tired of Hearing

BBC 3, 2 August 2016

From being spoken to as if they are children, to assuming they can't work or have relationships. These seven statements are guaranteed to annoy people with Down's Syndrome ...

My daughter has Down syndrome. Would I "cure" her if I could?

Amy Julia Becker, Vox, 3 August 2016
... "What are you researching?" I ask. I try to sound casual, as if I am not greedy to hear more. This fourth-grade year is the first one when she has been willing, or able, to give me details about her day consistently.

"Down syndrome," she says. "My big question that I wrote on my piece of paper is, ‘Why is Down syndrome scary?’ ... I haven’t answered the question yet. I know you were scared when I’s born. But I don't know why."

Down Syndrome couple's lives touched community

Patrick Hite, News Leader (USA Today), 3 August 2016

If the doctors who thought John Ozyjowski and Dottie Baker would never be productive members of society had only seen what so many saw last week, you wonder what they would have thought.

Julius, billy goats and a little inclusive story

Catia Malaquias, Starting with Julius, 4 August 2016
... There was nothing extraordinary. Nothing inspirational. But something more … there was something legitimate, something common and something that should be ordinary ...

The Evolution of an Accidental Meme

Craig Frohle, 15 April 2016
Several versions of this graphic representation of the difference between equality and fairness/justice have often been used in discussion of barriers faced by people with disability. This one from 2014, removing all barriers to produce 'liberation', is sourced from The Meme Centre.

The meme was originally produced in 2012 by Craig Frohle, who is 'stunned and delighted' by its evolution, and application to a wide range of discriminatory practices world-wide.