Weekend reading and viewing: 19th - 20th December 2015

What No One Told Me When My Child With Down Syndrome Was Born

Sondra Meacham, The Mighty, 17th December 2015
She turned my world upside down four years ago. In December 2011, we were preparing for the birth of our second daughter ... I’m thankful for how much I have learned about what is important.

He is Joe. He is our son

No Label, No Limits, 8th December 2015

When Sarah asked me if I would consider writing something for the PSDS blog I knew straight away that I would say yes. I realised that I’d reached something of a milestone by coming through the trauma and stress of the early months and that I was not only ready to share our story but desperate to! I often wish I could go back in time and tell my pregnant self what I know now ...

Life Expectancy for Those With Intellectual Disability Used to be Nine Years. Today it is 50 and Beyond
Prof Mary McCarron, Trinity College Dublin, 11 December 2015

The ageing of people with an intellectual disability is a success story that was celebrated in the inaugural lecture delivered by Professor Mary McCarron, Dean of the Faculty of Health Sciences and Trinity College Dublin’s first Professor of Ageing with Disabilities, in Trinity Biomedical Sciences Institute last night.

“This is the first time in history we have ever had a population of people with an intellectual disability who have reached old age and this is something that we should celebrate. Life expectancy for those with Down syndrome in the 1930s was nine years. Today it is 50s, 60s, 70s and beyond,” says Professor McCarron ...

• Professor Mary McCarron is Dean of Faculty of Health Sciences at Trinity College Dublin and an international expert in the field of ageing and intellectual disability, dementia and Down syndrome. She has been a champion for those with intellectual disability since she began her career as a nurse in the 1980s.

A lonely love
Heather Kirn Lanier, Star in Her Eye, 9th December 2015
... I said it slowly and clearly and sadly, and the sentence felt as weighty as a psalm: “It’s hard having a child that other people actively don’t want.”

There it was. My husband stopped what he was doing—scrubbing the stove? putting away silverware?—and turned to me. He opened his arms for a hug.I pressed my cheek into his fleece sweatshirt and stared at the wall. “I want her,” he said ...

What makes someone fit to parent?

Natalie Rose Corrigan, Daily Life, 17th December 2015

... In Australia, Rebecca*, who has a mild intellectual disability, was still pregnant with her first child when she was reported to child protective services. This may sound like a bizarre scenario, but it's an all too prevalent one among people with disabilities. One in five Australians has some form of disability and parents (usually mothers) with disabilities are up to ten times more likely to lose custody of their children ...

Weekend reading and viewing: 12th - 13th December 2015

How she is her best advocate
Ellen Stumbo, Hope and Encouragement, 4th December 2015
Nichole walked into the eye clinic ready to get her glasses fixed – she knew what to do – she sat at the open desk before one of the two attendants who work there and smiled. This was a new attendant to us, one we had never worked with before. I recognized “the look” right away ...

Sian Davey's best photograph – my daughter Alice, who has Down's syndrome

Sian Davey, The Guardian, 10th December 2015

... I was not prepared for how I would respond after Alice was born. She did not feel like my other children, and part of my instinct was to pull away from her. I was fraught with anxiety; I once dreamt Alice was swaddled in a blanket and I had forgotten all about her.

Alice was so small, but I knew she could feel my rejection. I was deeply sad that I could not immediately love my child – I wanted to make our relationship better, and the responsibility lay with me ...

What I call positive
Heather Saunders, This Calm Chaotic Life, 29th November 2015
... “Right, I’m going to be a bit controversial! I have lots of positives, but not all of them will be regarded as such by everyone. I love the fact that my daughter (17 next month) is grumpy, stroppy, loud, funny, uncooperative, stubborn, enthusiastic (on her terms!), musical (as are her 3 siblings) ...

All that matters
Paul Critchlow, Orange Juice Flavour Sky, 3rd December 2015
... This was also a day that Emily would never forget. She had been asked by Gloria and Steve to sing during their service. Not as part of a group or a choir or even a duo. She had been asked to sing a solo, accompanied only by her brother in law on guitar ...

Changing perspectives, paradigm shifts, and a lesson from a teenager

Alex McAuley, The Life That Max Built, 10th December 2015
... I knew I had undergone a huge paradigm shift when my answer to the ‘cure’ question changed from ‘yes’ to ‘no’ ...

The low-stress hair salon for people with disabilities
Kate Monaghan, BBC News, 10th December 2015
Liz Stewart used to have such problems getting her son Delroy to have a haircut that she ended up cutting his hair while he slept ... So she came up with the idea of opening a salon for people with additional needs to get their hair cut in a low-stress environment ...

Weekend reading viewing: 5th - 6th December 2015

Balancing the scales in favour of equality (and loving the women in Max’s life)

Alex McAuley, The Life that Max Built, 20th November 2015

... The men in his life are wonderful: they are kind, supportive, caring, but mostly fun. The women in Max’s life are his rocks: they are the ones who are sensible, offer practical advice and support, and sort out his washing when needed! This doesn’t mean they’re not fun as well, but the necessities of daily life take priority over the play time ...

Why college matters for people with disabilities (2m 35s)
Teresa Mahoney, Oregon Live, 21st November 2015
Daniel Jarvis-Holland is a sophomore at Benson Polytechnic High School. He has Down syndrome and wants to go to college. Now he finally can. PSU is pioneering a way for young Oregonians with intellectual disabilities to attend college via the Think College Inclusion Oregon (TCIO) project. Watch the video to learn why the college experience matters for people with disabilities ...

First gig

Orange Juice Flavour Sky, 30th November 2015

... make sure you do something for you every now and again to help you stay sane. This is not always easy but it is vital. Go book yourself some tickets to a concert, go to a spa, go do your thing, whatever that may be. But do something to help you feel alive ...

History of Down Syndrome - timelines

Global Down Syndrome Foundation
The Global Down Syndrome Foundation is committed to improving the lives of people with Down syndrome through research, medical care, advocacy and education. An important part of that entails educating the general public about the history of Down syndrome – both from a medical standpoint and a human-rights perspective. To this end, the Global Down Syndrome Foundation has created two timelines to illuminate the medical and civil rights progress made surrounding people with Down syndrome and other developmental disabilities. These timelines are available in simple text or an interactive format.

A Party of One? International Day of Disabled Persons

Dave Hingsburger, Rolling Around in My Head, 3rd December 2015

.. I am celebrating (International Day of People with Disability) here. On my blog and in my life. It's an important day on my emotional calender. I need these days. Days that remind me to stop and ponder. Days that remind me that I am part of something much bigger - a community of people, of voices, who have fought bloody but bloodless battles against attitudes and barriers. Those who lived and died locked away and those who flung open the doors.

I am here.

And I am not a party of one ... because

... we are here ...

Gun Violence and #DisabilityTwitter

David M Perry, How Did We Get Into This Mess? 3rd December 2015

... I want to reflect a bit on watching the San Bernardino story unfold. I was sitting in my office working on a white paper on media coverage of police violence and disability (coming soon, with my favorite co-writer), when the news broke of the killing. Soon, we found out that the killing took place at a disability services center, and my personal network of disability rights activists, disabled individuals, parents, caregivers, service providers, and so much more encapsulated by #DisabilityTwitter fell apart emotionally ...

Sydney Philharmonia Choirs + Auslan interpreters perform Handel's Messiah

Rachel Pupazzoni, ABC News 24, 2nd December 2015

A world first where Auslan signers will be centre stage with an orchestra and 500 strong choir to perform the well known work at the Sydney Opera House.

The Don't DIS my ABILITY campaign's profile image
available for your Facebook page here

Weekend reading and viewing 28th - 29th November 2015

Curing Down Syndrome?

Mark Bradford, Lejeune Foundation (blog). 10th November 2015

... (he) is not alone in regretting that he has to live with Down syndrome, but often the voices of those who long for treatments that would improve their cognitive capacity are lost among the voices of advocates working to further acceptance and inclusion. Some parents and other advocates deny that Down syndrome is a genetic anomaly and insist it is a natural part of human variation. Some reject the efforts of research to improve cognition, claiming that it is a form of “positive eugenics.” 2 Others fear that a drug to improve their child’s cognition will change their child’s personality that they have come to love deeply. There is little possibility that would happen ...

The outstanding men in Max’s life

Alex McAuley, The Life That Max Built, 17th November 2015

... I know the old saying goes that it takes a village to raise a child; well yes, a village would have been grand, but under the circumstances, I’ll take the family ...

Australia denies tourist visa because of Down Syndrome

Suresh Rajan, The Stringer,  21st November 2015

... As though I needed any further proof of the (Department of Immigration and Border Protection's) culture of complete insensitivity and, in some cases, blatant bias against people with disability yet another case of this has come to light ... our department starts from the basis that anyone coming to this country as a visitor WANTS to overstay their visa. What an incredibly blinkered view of the world. We can but hope that somewhere there is someone who will launch an inquiry into the “culture” of this department ...

My son doesn't want to say hello: disability awareness and taking the day off

Mary Eveyn, What Do You Do Dear? 25th November 2015

... my son doesn’t want to say hello. It feels weird. It also feels right. We can’t be “on” at every moment ...

Weekend reading and viewing 21st - 22nd November 2015

The good, the bad, and the downright unforgivable: part 2

Alex McAuley, The Life That Max Built, 13th November 2015
... I particularly remember one little girl, Hannah, who really clicked with Max, and without realising it, at just four years old she had become his advocate, mentor and role model as well as his dear friend. Whenever I went to pick Max up, he and Hannah would be involved in an activity together, usually involving dressing up in women’s clothes! ...

The good, the bad, and the downright unforgivable: part 3 and final
Alex McAuley, The Life That Max Built, 13th November 2015
So here I find myself recounting some dark days in my journey with Max and I still feel my stomach churning, my eyes filling with tears, and my head reeling with the injustice of it all ...

• Reprise:  The good, the bad, and the downright unforgivable: part 1, 28th September 2015

When My Boyfriend Didn’t Want to Come to My Brother’s Down Syndrome Walk

Allison Mitchell, The Mighty, 13th November 2015

... What I needed to realize and what Frank helped me see is that not everyone can jump in full force. Yes, he and Chess got along great but that didn’t mean he was ready to be 100-percent immersed in a community I’d been a part of my whole life. Sounds silly, right? ...

The Harper Family (video 21m 34s)
Attitude Live TV (NZ)
Take a step into the world of the Harper family. After having children of their own, the Harpers wanted to make a difference in the world when the couple adopted Lily, a girl with Down Syndrome. They went on to have another child of their own, also born with Down Syndrome. Then along came Isaac to add to their large family!

• Attitude Live TV hosts a number of other videos about Lily - just enter 'Harper' into the search box

I fear the eradication of Down's syndrome

Hayley Goleniowska, Mumsnet, 16th November 2015

... there is no health gain in diagnosing Down's syndrome during pregnancy. It cannot be treated or prevented. It simply allows parents to decide whether to continue a pregnancy to term or not.

There are ethical implications to genetic testing, but no easy answers ...

21 Stress Free Tips for Teaching Your Child with Special Needs to Dress Themselves

Emma Sterland, Friendship Circle, 16th November 2015

We’ve all been there – rushing to get out the door while our children are still attempting to button their shirts. The easiest and most natural solution is to do it for them. But a little bit of patience can go a long way. Encouraging your child to dress themselves, and teaching them the techniques to do it, will not only save you time in the future, it will give them an all-important sense of achievement ...

And just in case you missed it earlier in the week, here again is Say it to my face, one of the best short 'awareness' campaign videos ever, from Don't DIS my ABILITY, the NSW annual campaign for International Day of People with Disability:

Weekend reading and viewing: 14th - 15th November 2015

Ruby's Rainbow (video 9m 43s)
We posted recently about the smart awareness campaign run by Ruby's Rainbow during October.

This small US not-for profit organisation was set up by the mother of a little girl with Down syndrome, specifically to 'grant scholarships to adults with Down syndrome who are seeking post-secondary education, enrichment or vocational classes, and help them achieve their dreams of higher education, while spreading awareness of their capabilities and general awesomeness' ... a singular focus for the parent of such a young child, with her eye well on Ruby's and others' long term futures.

In the video, co-founder Liz Platcha explains why she decided to set up the fund in 2012, and hears from some of the scholarship recipients.

The One Truth I’ve Learned as the Dad of a Daughter With Down Syndrome

Paul Daugherty, The Mighty, 6th November 2015
... If there’s one truth I’ve discovered as a dad of a daughter with Down syndrome, it’s simply this:

Jillian is good. Her goodness inspires others to be good. She has wielded her Down syndrome like a sword of understanding. She acts like the rest of the world should ...

To the People Who Say I Share Too Much About My Child Online
Suzie Skougard, The Mighty, 9th November 2015I know I overshare my daughter, Carly. It’s out of fear. I share because people stare. As she’s gotten older, it’s become more and more real. She is looked at differently. At checkouts and restaurants. Everywhere in between. When she was younger, I think people didn’t notice as much. They do now ...

"Give a Part, Don't Keep Apart": advancing inclusion in advertising and media
Cátia Malaquias,  Global Observatory for Inclusion, 4th November 2015
... how can the media help to achieve human rights for people with disability? The media is a vehicle for mass communication and in that sense it has the potential to shape attitudes to disability at both an individual and cultural level, particularly where it challenges able-bodied perspectives of disability, amplifies the voices of people with disability and portrays people with disability authentically and as equal citizens entitled to participate fully in every sphere of life. In essence, the media, like the education sector, has a critical role in the achievement of social and economic inclusion for people with disability ...

Photographer Recreates Famous Paintings With Children With Down SyndromeElisabeth Brentano, The Mighty, 10th November 2015

Albanian photographer Soela Zani recently teamed up with Down Syndrome Albania and director Emanuela Zaimi to create a stunning portrait series of local children inspired by a number of famous paintings ...

Step Up! for Down Syndrome 2015 - Parramatta 

Step Up! for Down Syndrome 2015 - Parramatta 

Step Up! for Down Syndrome 2015 - Picton

Step Up! for Down Syndrome 2015 - Picton

Weekend reading and viewing: 7th - 8th November 2016

It's only an awkward society that believes Stevie Payne needs to be a 'joyous beacon'
Kathy Evans, Sydney Morning Herald, 4th November 2015
(People with disabilities) are either an inspiration to, or a burden on society; they cannot just 'be'.

Until Tuesday, Payne's brother, Stevie, was a perfect example of a man with Down syndrome who could just be an ordinary bloke. Working as a strapper at the Ballarat stables, he got on with the daily tasks of feeding, grooming and saddling race horses.

Overnight he has become, according to to one report on Tuesday, "a joyous beacon for the life those afflicted with Down syndrome can lead."

There is so much wrong with that statement ...

Advocacy Counts
Thea Calzoni, Every Australian Counts, 2nd November 2015

Leah, 33, helps to advocate for others with an intellectual disability ...

Ten Things that Help Keep Our Marriage On Track
Mumma Love, 30th October 2015
I recently told Ben that sometimes in our relationship I marvel at how great it is and can’t imagine it being any other way. We are happy and in love and communicating well and it’s blissful. And then we have times where it feels as though we’re on the brink of divorce and I wonder whether we’ll ever get back to that uber happy place again ...

Parents Of Kids With Disabilities Buck Divorce Trend
Michelle Diament, Disability Scoop, 3rd November 2015

Parents of those with developmental disabilities are no more likely to divorce than other moms and dads, new research suggests, but different factors are at play.

For most couples, divorce odds increase as they have more children. Among parents of kids with special needs, however, this phenomenon is absent ...

When 'helping' people with disabilities is patronising and rude

Carly Findlay, Daily Life, 3rd November 2015
On a rainy Saturday evening in August, I was travelling home on a train. I'd just been at rehearsals for Melbourne performance night Quippings, where I'd been discussing disability politics, including the excessive niceness and pity thrust upon disabled people.

I was looking at social media on my phone, not speaking and not in any need of assistance (I would ask if I was - and that's rare). Suddenly, I was faced with the following situation.

Stranger on train: "Excuse me, would you like a wet wipe?"

Me: "No thanks."

Stranger: "I think your face is a bit sweaty and you could use one."

Ahh they mean well, don't they?

No Blowout of Disability Support Pension Costs - NFP
ProBono Australia News, 3rd November 2015
The number of people receiving Disability Support Pensions in Australia is in decline and so there is no blowout occurring despite media claims to the contrary, according to the CEO of peak body, National Disability Services, Ken Baker.

“The number of DSP recipients is falling; so is the proportion in work,” Baker told Pro Bono Australia News ...

Weekend reading and viewing: 31st October - 1st November 2015

October's Down Syndrome Awareness Month Was Never About Human Rights

Kari Wagner-Peck, Huffington Post (blog), 29th October 2015

In 1984, Reagan inaugurated October as National Down Syndrome Awareness Month. His proclamation would encapsulate a failing in Down syndrome advocacy for the next 30 years:

"In the past decade, the United States has entered a new era of hope for its developmentally disabled citizens", Reagan intoned, "This new age of enlightened understanding recognizes that developmentally disabled persons have a great potential for achieving and overcoming handicaps. And, then, this: "Research has uncovered the genetic basis for the condition and points the way to its ultimate prevention."

It was a mixed message. We accept you and we would hope to prevent you. It was, after all, a proclamation not human rights legislation ...

On the Eve of 21

Lisa Bridle (guest blog), Mumma Love, 29th October 2015
My beautiful, amazing son turns 21 in a few short months.This impending milestone has me thinking I really must put my mind to booking a venue worthy of such an auspicious celebration. It has also had me recalling those scary early hours and days when Down syndrome seemed like such ‘bad news’. Over the years, I have often pondered all the things I would like to tell that sad and terrified young (well younger!) mother that I was back then, to comfort and reassure her, as well as help her navigate what was to come. How I would like to be able to reach out to her to break the spell of gloom and confusion and convince her that not only will she be completely besotted by this unexpected baby but she will also greatly value the rich adventure she is about to live – and all she will learn through it ...

Down Syndrome awareness month highlights need for understanding
Sage Swinton, Cessnock Advertiser, 23rd October 2015 
October is Down Syndrome awareness month, celebrating people with Down Syndrome for their abilities, not their disabilities.

Some local families who have been touched by Down Syndrome decided this was a great chance to raise awareness about the condition and the stigma surrounding it ...

My Special-Needs Son Hates Halloween

David Perry, Pacific Standard, 28th October 2015

The costumes are itchy, the candy bores him, and we keep asking him to be someone he’s not ...

... Holidays can be exhausting for people with disabilities—and for their families and caregivers. In most societies, holidays function to create shared social experiences. This can be a socially constructive arrangement, building bonds among members of communities, but establishing norms always puts pressure on people who cannot (or will not) conform ...

Down Syndrome: A letter to a mama who just found out…

Cassie Weber, Up Parenting Creek, 26th October 2015

October is Down Syndrome Awareness Month. I hardly knew a thing about Down Syndrome before my daughter came along. I’m sure many people who receive this diagnosis for their child don’t know much about it either ...

My Son Who Has Down Syndrome Tells Me Something That Changes Everything
Kari Wagner-Peck, Huffington Post, 24th October 2015

... "Listen, as long as we are talking about this--how are you feeling about your Down syndrome?" ...

The Answer
Dave Hingsburger, Rolling Around In My Head, 28th October 2015
... I got to sit there and listen, really listen, to them think, and reason, and figure, and joke and laugh and think again and reason again. A group of people who others think can't think and can't reason are doing just that, their words swirling around the room, their ideas slowly unwrapping the question to find the answer.

Then a woman at the back called out the answer. The room erupted. I didn't even have to say that she got it right ...

• The Answer to The Answer - the follow-up post

Time for a Special Minister for Disability
Peter Gibilisco, Pro Bono News, 6th October 2015
Disability support and policy is currently undergoing much needed and crucial reform. There is a lot of taxpayer money being spent on seeking to get things right.

The National Disability Insurance Scheme is a wide sweeping reform that will try its utmost to significantly improve the lifestyles of people with disability however severe or profound they may be. And there is a need for significant government financial support for people with disability. Which leads me to ask: should a special ministerial portfolio be created for people with disability? ...

Weekend reading and viewing: 24th - 25th October 2015

Faces in the crowd and Down syndrome awareness

Mark Leach, Down Syndrome Prenatal Testing, 14th October 2015
This past weekend, my wife and I enjoyed a trip to New York City. Here’s what we saw, and what we didn’t see ...

How My Son Chooses to Teach Down Syndrome Awareness

Mardra Sikora, Huffington Post, 17th October 2015 

Earlier this week my son and I presented the animated short of the children's storybook, Black Day: The Monster Rock Band. We had a few stops scheduled; one was to the third grade classes at an elementary school near Austin. The teacher who arranged our visit told me, "I read the book to my class last week. They loved it! I told them that the author has Down syndrome and they asked, 'What is Down syndrome?'"

This has been my dilemma as Marcus and I have met each new group. Should we talk about Down syndrome? And to what extent? It is, after all, Down Syndrome Awareness Month, and Marcus does happen to have Down syndrome ...

In the case of the first graders we visited in Georgia, they were pretty focused on the monsters in the band, the angry mob, and loving the music.

When I advocate for Thorin, I see Monty too
Kari Wagner-Peck, Bloom, 16th October 2015
... Early on, professionals and lay people repeatedly assured us that all children with Down syndrome are happy. In time I came to realize that these people meant more than “happy.” They meant “simple.” They believed people with Down syndrome couldn’t understand the complexities and ambiguities of life, so, as a result, they were happy.

I knew this was not a universal truth about people with Down syndrome. No one is happy all the time. I had known someone with Down syndrome, and he was definitely not happy. He was also quite painfully aware of the complexities of life ...

When a Man Uttered 2 Magic Words About My Son With Down Syndrome

Maxine Sinda Napal, The Mighty, 22nd October 2015

... For days, the sense of being overwhelmed quietly threatened like black boiling clouds that precede a hurricane. It’s the big fear. The great unknown. The old what if.

But not today. No what if. Just what is. One older man on a bike grinning at a toddler toddling ...

Sometimes people need a little help finding romance and people with disabilities are no exception

Lesley Robinson, 7.30 Report (ABC TV), 22nd September 2015 (video 7m 23s)

Sometimes people need a little bit of help to find romance - and people with disabilities are no exception. That's where the Dateables Ball comes in. It's a singles dance, relying on some old-fashioned matchmaking to help people with disabilities looking for love ...

Step Up! for Down Syndrome - Huskisson, 2015

Step Up! for Down Syndrome - Huskisson, 2015

Step Up! for Down Syndrome - Huskisson, 2015

Step Up! for Down Syndrome: some photos

Photos from both Step Up! events held today are on the Facebook pages of Down Syndrome NSW, and Step Up! for Down Syndrome Riverina. Here is a quick preview, but do go to the Facebook pages for more:

A good gathering at the beautiful registration point for
Step Up! for Down Syndrome Nowra -
Moona Moona Creek, Huskisson, on Jervis Bay

The weather was perfect for Step Up! for Down Syndrome
Riverina in Wagga Wagga

And sometimes, too much fun really is enough -
Dad's shoulder is the best!

Congratulations to all involved, organisers, sponsors and participants. Next week - Sydney!

Weekend reading and viewing: 17th - 18th October 2015

Abigail’s journey: A trip to Boston makes tomorrow possible
Thriving (Boston Children's Hospital), 12th October 2015
From the time Erika Jones was 30 weeks pregnant, she and her husband Stephen prepared for an excruciating eventuality. The Jacksonville, Florida, couple was told their daughter would die before or shortly after her birth. They arranged for pediatric hospice before Abigail was born. They made a decision tree factoring in clinical scenarios from intubation to a do-not-resuscitate order. They planned to scatter Abigail’s ashes on a Florida beach.

“We didn’t plan for this scenario,” says Erika, quietly glowing and cooing at the healthy newborn in her arms ...

Coping with Loss: Down Syndrome
Nancy McCrea Iannone and Stephanie Hall Meredith, Down Syndrome Pregnancy, October 2015
The book offers support to families who have experienced a miscarriage or lost a baby or child with Down syndrome by covering topics like coping with grief; dealing with comments and the practicalities of loss; helping siblings cope; and finding resources. This book also features the stories and photos of families who have experienced loss and who provide their personal insight.

“This booklet provides an immense resource for families as they cope with the loss of their child. I take great comfort in knowing that it will reduce stress for future grieving families by guiding them through this difficult experience” ...

• The booklet is free to download from the downsyndromepregnancy.org website.

On their Facebook page, the writers commented:

After 7 years of working on this book, our gift to the community during "Down Syndrome Awareness Month" and "Pregnancy and Infant Loss Remembrance Day" is "Coping with Loss: Down Syndrome." Our message to that minority of parents who have experienced either a miscarriage or the loss of their baby or child is this: we are so very sorry for your profound loss; you and your child are important and are not forgotten ...

Scrapheapers make $20,000 for Down Syndrome

Michele Jedlicka, Inverell Times, 13th October 2015

They were road-weary and dusty, but smiling.

“Big grins on our faces,” Inverell Scrapheap team member Brendon Campbell said.The Scrapheap Adventure Riders returned home last week from the trip, and raised a significant amount for Down Syndrome NSW. 

“We raised over $20,000, the state raised over $65,000, so our team won the award for Best Fundraiser,” Brendon said. “The next highest team, Sydney, raised $7000, and they have twice as many riders as us" ...

Emi Campbell, Col Meacham and Grace Gilsenan, 

daughter of Scrapheap Ride founder Perry Gilsenan. 

Photo:Brendon Campbell

People With Down Syndrome Design Unique Tattoos For Loved Ones -the results are gorgeous

Kimberley Yam, The Huffington Post, 17th September 2015
These tats are beyond awesome.

In an episode of tattoo reality show "Ink Master" that aired earlier this month, the contestants (all professional tattoo artists) were challenged to ink clients with designs created by their loved ones, who all have Down syndrome. The project not only produced beautiful results, it also moved several of the tattoo artists who were involved ...

Having disabilities is who we are - the eight year old girl who wants to change the world

Starting with Julius, 15th October 2015

A few days ago it was the International Day of the Girl Child and social media joined in the discussion about the importance of education and empowerment for girls. It was a day for standing up for the rights of young girls and to recognise their voice and their capacity to change our world for the better.

One young girl who is doing just that is Emily Prior, an eight year-old from Perth, Western Australia, who has cerebral palsy and is challenging the advertising industry to include people with disability, by forging a path as a model – on her terms ...

Weekend reading: 10th - 11th October 2015

Down Syndrome Awareness Post #8
Angela Lombardo, Down Syndrome Program at Boston Children's Hospital, 8th October 2015
For some years, Angela Lombardo, the clinic coordinator at the DS Program at Biston Children's Hospital,  has written 31 Facebook posts for 31 days during Down Syndrome Awareness Month (October), and she is doing so again this year. This one is from yesterday - they are all worth reading:

It’s important to know the history of disabilities to appreciate where we are now and to keep the expectation and bar raised high for our kids and kids to come after ours. We need to hold the torch that other parents carried before us. Someone walked the path you are on ... years ago someone created that path. Someone’s tears, sweat and love widened that path for us. 

We no longer send our babies to institutions. We expect our children to be educated. We want our children to be important community members. We want our children to live to the best of their own personal potential. We treat them like human beings who deserve equal opportunities that others are offered. 

This all is possible because of those who stood up for their children’s rights many years ago. We have to honor those before us by appreciating their struggles and using them as motivation to keep that bar raised, to demand best practices in education, to carry that torch and keep breaking barriers that still exist. 

I have a neighbor who is a 52 yr old man with DS. He lives with his mother who I used to talk to a lot when my son was younger. She mentioned once she was sad seeing how my son was learning to read and her son was never given the chance. I told her that she is my hero because when he was born, the doctors immediately told her he has DS and asked if she knew where she wanted him to be sent. She told them he comes home with me. She wouldn’t listen to their doom and gloom and insisted her son will be part of their family. 

She gave him the best life she could. He was never taught to read. She is not at fault for that. It was the time. 

It’s a new time. She helped us get to this new time. This mom and others before us paved our way. To those before me, I say thank you! 

Check out this interesting timeline to learn a bit of the history.

I’m Not Cute, I’m a Woman: a sister’s fight to challenge perspectives of Down syndrome

Lucinda Bain, MummaLove (guest post), 8th October 2015
... The funny thing I’ve noticed about Down syndrome compared to other disabilities is that there is this weird element of cutesy when people talk about it. I have never heard a thirty-something year old with cerebral palsy described as “so cute!” yet I get variations of this comment about my (married, employed, independent, adult) sister constantly ...

What really needs to be shared during Down Syndrome Awareness Month

Sipping Lemonade, 4th October 2015

... we sat together in the courtyard next to an over-sized pot of pansies and talked for over an hour. Becky babysat Kate and the other little ones, herding the 3-year-old away from the fountain, as Donna shared their story ... I realized that what Donna gave me that summer evening was not just great conversation and encouragement — but also, awareness ...

My son is different - and that's OK!

Stephanie Holland, Walkersville Mom, 10th September 2014
A thought that’s been weighing heavily on my mind lately is one that’s not going to be popular. It seems to go against things that are important to me and many others. But, if I’m going to be true to myself and to Josh, I have to say it. Out loud. My son IS different ...

What Does My Brain Tumor Mean for My Life as a Mother?

Alison Piepmeier, New York Times Parenting Blogs, 6th October 2015 

... All the while, the thoughts and fears are chasing themselves around in my head. How can I take care of her ...  She can be difficult to understand: Who will listen to her, follow her communication, be able to share it with others? Will other people see Down syndrome as simply part of who Maybelle is? And see her needs? Can I work hard enough that I can keep every possibility open for her — even if I’m not here to fight for her?...

20-Question Quiz to Determine Your Disability Literacy

Paul K Longmore Institute on Disability, 6th October 2015

With October officially recognized as National Disability Employment Awareness Month in the U.S., we thought it would be fun to give folks a chance to rate their own awareness. Jot down your answers and then proceed to the next page to total your score ...

The public gaze - on being invited to be a subject of the Body Bizarre documentary
Carly Findlay, 8th October 2015
Last month I wrote some advice you might like to consider when approached by the media to tell your story about your rare medical condition/disability/facial difference ...

For my own amusement, I put my own advice to the test when I received yet another invite to take part in a documentary about rare medical conditions. I think the producer just expected me to say yes, of course I'll be exploited by a voyeuristic program.

I emailed the producer the questions I stated in my post. I was frank with her - explaining my concerns about how they portray disability. I wonder if she's ever had such rigorous, assertive questioning before?

The producer surprisingly emailed me back, addressing my concerns ... But the show fails. Epically ...

Why I Will Never Say I ‘Fight’ My Disability

Karin Hitselberger, The Mighty, 30 September
Recently, I saw a picture on Facebook that said, “I fight cerebral palsy. What’s your superpower?” So much about this illustration focusing on cerebral palsy awareness struck me as wrong and uncomfortable, and it left me with a kind of nauseous feeling in my stomach ...

Location for Step Up! for Down Syndrome Nowra
- Moona Moona Creek, Huskisson, Sunday 18th October

Weekend reading viewing: 3rd - 4th October 2015

Gail Williamson: Changing Hollywood’s Perception of Disability

David Norby, The Hub, 11th September 2015

When her son, Blair, was born with Down syndrome in 1979, Gail Williamson did not suspect his condition would come to shape her own professional future. She did, however, recognize she could “absolutely silence a whole restaurant, just by carrying Blair on [her] hip.” It was a regular, and sobering, occurrence ...

Film Starring People With Down Syndrome Takes Aim at Misconceptions

Melissa McGlensey, The Mighty, 30th September 2015
When Roderick Stevens’ younger brother Andy moved in with him in 1993, there were lots of changes happening. Andy Stevens has Down syndrome and was 18 years old at the time.

The brothers had just lost their mother to cancer when Roderick moved Andy into his home in Sierra Vista, Arizona, with his then-wife and two small children. Roderick was busy working as a filmmaker but found himself deeply worried about his brother’s future and how he’d find his place in the world. Then Andy began asking Roderick to teach him how to drive ...

10 Things I Love About Having a Kid With Down Syndrome
Kat Abianac, Parker Myles, 15th July 2015
10. I love how awesome toddlers are. They’re funny, cute, and they have big heads on teeny little human bodies. It makes you go ‘awww’ and is the same lethal combination that has made many kittens famous on the internet ...

Kids and Adults with Down Syndrome Belong in the Picture
Amy Julia Becker, Parents, 30th September 2015
Parents like us can take credit for the rise in visibility of kids and adults with Down syndrome, both in the public view and in the media. Down syndrome is gaining a new type of visibility as more and more individuals, businesses, and campaigns recognize that this group deserves to be in the picture, both literally and metaphorically ...

Subway Dreams: Disability, Inclusion, and Identity in New York
Paras Shah, The Huffington Post, 29th September 2015
The World Health Organization estimates that one billion people, one in seven of the world's population, have some form of physical, sensory, or psychosocial disability. Taken as a class, people with disability have reduced access to healthcare, education, transportation, jobs, and overall quality of life ...

What not to expect from your child with special needs
Love that Max, 22nd September 2015
..."Did you ever think you'd be chilling with Max and enjoying a football game?"

"No," he said, and I knew just what he meant ...

She's Always Happy
Loving Lydibug, 21st September 2015
One word that is often used to describe a person with Down syndrome is that they are always happy. I have taken some time to observe Lydia and see how accurate that statement is. Honestly it drives me nuts because my mind is taken to all of the times she disobeys, yells and screams, throws a tantrum. To me, she has every emotion and really there is no difference with her than my other children. However, there is a difference! ...

How society disables people with disabilities
Helen Razer, SBS, 25th September 2015
For many people with a disability, life is no picnic. It can be more like a famine, in which survival depends on unwanted scraps.

The annoying thing about this scarcity – felt in work opportunity, education and all the most usual forms of inclusion – is that it doesn’t have to be that way. The bodies of people with a disability may sometimes produce “natural” disadvantages, but these are as nothing compared with disadvantages produced by the social world ...

... Senator Mitch Fifield, the former parliamentary secretary and shadow minister for disabilities, may have been promoted in government, but the rollout of the NDIS, whose responsibility now falls to the overstuffed social services portfolio, is at great risk of little attention.

It was a shock with potentially immense reverberations. It was barely reported ...

Weekend reading and viewing: 26th - 27th September 2015

Fill the Bookends with Beauty and Carry a Big Sword
Kelle Hampton, Enjoying the Small Stuff, 22nd September 2015
This is a small incident, and yes there’s a battlefield out there. But this is how we’ll do it: Fill the bookends with beauty so that those deep sea moments in between barely have room to breathe.

And carry a very big sword ...

6 Types of Strangers You May Meet If Your Child Has Down Syndrome
Kari Magner-Peck, The Mighty, 22nd September 2015

Unwanted commentary by strangers about my 8-year-old son who has Down syndrome is a common occurrence. I understand noticing difference; that in and of itself is not objectionable to me. What is objectionable is how my son’s difference is somehow seen as an invitation by strangers to make comments that — whether they know it or not — are offensive and hurtful ...


Stop the #Rword! 

NSW Council on Intellectual Disability, 22nd September 2015

NSW CID wants to say something and wants to say it loud and clear. 

The use of the word "retard" as an insult is just not on. 

NSW CID was very disappointed to see an Australian newspaper journalist - use the hashtag “leftard” in a twitter post on 20/9/2015. 

"Everyone hates this word. It is just one word - but it is outdated and offensive. It is derogatory - please use another word" says NSW CID Chairperson Michael Sullivan, who has Down syndrome. 

Sullivan feels that "using that word is just unfair and it is not acceptable". 

NSW CID, the New South Wales Council for Intellectual Disability, advocates with and for people with intellectual disability to change things for the better. Executive Director Advocacy, Aine Healy reveals that "changing societal attitudes about people with intellectual disability is one of our major challenges - the recent insensitive use of this word in the media indicates that there is still much progress to be made". 

People with intellectual disability are so many things - students, employees, partners, sportsman, advocates, friends and family members - they are so much more than a label. They do not deserve to be at the brunt of hurtful and cruel insults. The "R" word reinforces negative, demeaning and untrue stereotypes. 

NSW CID calls upon the media and the wider public to refrain from using the word. As Sullivan wisely suggests -"Get a dictionary and use something else".

Why YA fiction needs to embrace disability

The Guardian, 13th August 2015
... When I was younger, I always hoped that one day I’d read a book about someone just like me.

I did find characters who were pretty similar to me – the brunette teenage girls who loved reading and writing – but there was always one important trait that I could never find in any protagonist of all the books I read when I grew up ...

This weekend: Scrapheap Adventure 2015 - Urana, NSW

Day 1 was a great route - we had over 35 bikes along, including
 the DTeam which are DT200's. Arrived in Gunning a little chilled.
We picked up some more riders here for Day 2 to Urana.
Is still a bit cold but sunny 😃

There will be more to see on Facebook, and you can visit the website to donate.

Weekend reading and viewing: 19th - 20th September 2015

A comment on Mamamia's article on child models with Down syndrome
Catia Malaquias, Starting with Julius, September 2015
A few days ago, an article appeared in the online publication “Mamamia” titled “The models with Down Syndrome we’re seeing all have one thing in common – Are child models with Down Syndrome really a great win for diversity?” ...

I read it with interest, of course, and I agreed with some of the points that it makes. The article also linked to several videos of the late Stella Young, the Australian disability activist, speaking about the portrayal of people with disability, especially in the media, which so frequently stereotypes, objectifies and exceptionalises ...

Brotherhood and beyond: part 1 and Brotherhood and beyond: part 2
Alex McAuley, The Life that Max Built, 19th August and 3rd September 2015
... It’s only now with the benefit of hindsight that I realise what an exceptional little boy he was. Not only had he been forced to share the limelight with a new baby, this particular new baby was taking a tad more of said limelight than Harry would probably have liked! Harry was being gently, but persistently, nudged off centre stage by the innocent and unknowing Max. One could reasonably have expected this to result in tantrums, jealousy and bad behaviour, but instead Harry, who was not yet two years old, took on the role of big brother, rolled up his sleeves and decided he would help ...

Adventures in Social Inclusion: I'll be there for you ...

My Choice Matters (blog), 14th September 2015
Friends and connections are an essential part of anybody's life however for people with disability it's not always as simple as Nidhi Shekeran explores in this piece about social inclusion ...

Glasses for children with Down syndrome
Sipping Lemonade, 12th July 2015
A couple of months ago, we learned that Kate needed glasses.

My first thought (after learning all about her prescription, of course) was: She’ll be adorable in glasses!

My second thought was: Wait — how in the world will we get her to keep them on? (She’s not a fan of anything she deems an extraneous accessory: i.e., hats, shoes, sunglasses) ...

People With Down Syndrome Design Unique Tattoos For Loved Ones

Kimberly Yam, Huffington Post Australia, 17th September 2015
These tats are beyond awesome. In an episode of tattoo reality show "Ink Master" that aired earlier this month, the contestants (all professional tattoo artists) were challenged to ink clients with designs created by their loved ones, who all have Down syndrome. The project not only produced beautiful results, it also moved several of the tattoo artists who were involved ...

"I'm here to get a tattoo of the sign language symbol of 'I love you,' to show the positive impact Joe's had on my life."... 

"... I want to get a tattoo of her artwork on me to show I really believe in her as an artist" ...

Weekend reading and viewing: 12th - 13th September 2015

Emotion 21 in India
Melbourne dancers, emotion21 have posted a fabulous series of photos from their recent visit to Chennai, India, performing at the 12th World Down Syndrome Congress, and at several community events in India.

How My Son With Down Syndrome Fixed a Hotel Problem I Couldn’t
Sherry Palmer, The Mighty, 3rd September 2015
... A leader sees the abilities in others, calls them to the task and then gets out of the way and allows them to do it. A leader inspires others — not with their elevated sense of self, but by their sense of seeing what’s possible and elevating others. A leader is fearless.

Sometimes I forget what a leader my son, Charley, is. But then I saw him in action first-hand this morning. Here’s what happened …

We Planned Our Trip to ‘Holland.’ Here’s Why We Didn’t Need to Stay

Rebekah Moilanen, The Mighty, 31st August 2015
... We chose Holland. We adopted our son who has Down syndrome. We fully expected his therapy sessions, his slower milestone gains, his amazing feats of double-jointedness and his beautiful little almond-shaped eyes. But somehow Holland ended up simply being stop number one on our journey around the world. We never expected his cancer, his kidney failure, his seizure disorder, his catheters, his feeding tubes and all of the other issues that he has that have nothing to do with his Down syndrome ...

Down Syndrome, Prenatal Testing, and a Teenage Soap Opera? The Importance of Switched At Birth

David M Perry, The Mary Sue, 1st September 2015

Switched At Birth is a teen soap opera ... on ABC Family (USA). It also might just be, to my continuing pleasure and surprise, the best show on television at addressing disability issues. For three and a half seasons, the show has explored Deaf issues mostly admirably. Now, the ex-girlfriend (Lily) of the brother (Toby) of the girls who were “switched at birth” (Bay and Daphne) is pregnant. In the final scene of the first new episode this fall (two weeks ago), revealed she had been through genetic screening and received a positive test for Down syndrome.

I’m the father of a boy with Down syndrome and a disability-rights journalist. The idea of a soap opera addressing an issue in which I am so personally invested would have, in almost any other context, made me pre-emptively wince. But Switched at Birth has been doing an excellent job engaging with Deaf culture and issues affecting the Deaf community for years ...

To My Daughter With Down Syndrome On Her First Day of Kindergarten
Deanna Smith, Huffington Post, 27th August 2015

... Today you enter Kindergarten. You, a big, beautiful, grown up little person, begin your educational journey ... Now as I think of you sitting tall in your seat marked with your name, listening to your teacher, learning alongside your peers, being a kindergartener, I am once again terrified ...

Weekend reading and viewing: Fathers Day Edition, 5th - 6th September 2015

Brendan O'Connor: Happy birthday to my baby girl Mary

Brendan O'Connor, Irish Independent, 30th August 2015

His daughter Mary has turned five and is starting school, and she still has Down syndrome. And Brendan O'Connor is trying like hell not to think too much about the future ... She will be so much more than a service-user. She will not be defined by Down syndrome. It permeates every cell in her body but so does her quintessential Maryness. And that overrides everything else ...

3 Mantras to live by: from the father of a married woman with Down syndrome

Parker Myles, 17th August 2015
Paul Daugherty and his wife Kerry together proudly raised their daughter Jillian, who has Down syndrome.

Jillian has achieved many incredible things in her life, and last month her parents watched her marry the man of her dreams. Her father, Paul, wants to share some advice with you- from one parent to another ...

Recognising Fathers: the experiences of fathers who have children with learning disabilities

Foundation for People with Learning Disabilities

What we aimed to achieve through our research with fathers:

• Fathers are no longer the 'invisible parent'
• They are valued in their role as carers
• Policy and practice responds to the needs of both fathers and mothers who are raising a child with learning disabilities
• 'Recognising Fathers' leads to a better life for all the family ...

Weekend reading and viewing: 29th - August 2015

Seven resolutions passed at World Down Syndrome Congress in ChennaiU Tejonmayam, Times of India, 21st August 2015
... The resolutions include educational equality, employment opportunities, establishing special support/knowledge centers across the country, better healthcare facilities, introduction of a comprehensive health policy, opening and maintaining of bank accounts and introduction of a medical passport ...

Growing Up

The Diary of a Not So Ordinary Boy, 21st August 2015

... he woke up with a whispered ‘yesssss’ at half past five (presumably he was relieved at his survival of the night), but being as he was right next to me, I told him the time and he nodded right back off with a huff ...

Home Schooling, and Teaching, a Child with Down Syndrome

Kari Wagner-Peck, Parenting Blogs, New York Times,15th February 2015
... He sat in the back of the classroom while other students participated in group activities, counting to four with his one-to-one aid. At home, he could count to 50.

Inclusion, we realized, works only if everyone involved believes in a child’s ability to be included and to contribute something to the group ...

I’m Tina, I’m a mum, this is my journey…
Down's Syndrome Association (UK)...When she came to our house, the midwife spoke gently; she reminded us what she had told me on my booking-in appointment regarding the nuchal screening and what the results meant. I couldn’t remember ever hearing this before; had I really agreed to have this done? Why did I not realise the importance of everything I had agreed to? ...

Maryanne and Tommy have a lesson for us all

Angela Kelly, Preston Citizen, 29th July 2015
The story of the couple with Down’s Syndrome who have just renewed their wedding vows after 20 years of married life is wonderfully heartwarming ...

The Weekly With Charlie Pickering Series 1 Ep 19

ABC TV, 26th August 2015 (on iView until 16th September 2015)

Comedy. Interview with Graeme Innes, disability advocate starts at 19 mins.


Are attitudes changing to the 1.4m people in the UK with a learning disability?

Katrina Scior, The Conversation, 27th August 2015

... 'Changing Attitudes to learning disability', a new review I produced for publication by Mencap, points to a double standard in public attitudes towards people with a learning disability. The British Social Attitudes Survey in 2009 found that just 41% of parents would feel very comfortable if their child had a classmate with a learning disability, compared to 76% for physical and sensory disabilities. This highlights a key problem: on the whole people say that those with a learning disability should be treated equally, but at the same time many behave in subtly prejudiced ways which in fact reinforce negative stereotypes ...

Weekend reading and viewing: 22nd - 23rd August 2015

The 12th World Down Syndrome Congress in in session in Chennai, India this week. Photos and short reports of the proceedings are appearing on social media, and while there are many serious, substantive information sessions, the first pictures, were, of course of dancing - traditional elephant dances and Bollywood dance lessons, enthusiastically taken up! This UK video was part of the opening session:

World Down Syndrome Congress 2015DSA UK, 19th August 2013
The Congress opened with the world premiere of ‘Langdon Down, The Legacy': a short film about the extraordinary Victorian building in London which is home to DSA UK. Built by Dr John Langdon Down in 1868 as a place where people with learning disabilities could be cared for and educated, it is widely regarded as the ‘spiritual home’ of Down’s Syndrome ...

Open Letter of Gratitude and Well Wishes to Actor Chris Burke

Mardra Sikora, Huffington Post, 19th August 2015
My son was born in 1990, a time when the TV show Life Goes On aired on ABC weekly. This show, which featured a main character who happened to have Down syndrome, made its place in history, while you personally demonstrated a life of ambition, of possibility, and of self.

Your ambition validated my own hopes for my son, who also has Down syndrome ...
The Other Ramp
Dave Hingsburger, Rolling Around in My Head, 2nd August 2015
... Only someone in the disability community would be able to assess 'welcome'. Only someone who has a disability understands what it feels like when disability is 'unwelcome.'
I said, "The doors are flat and the attitudes are ramped" ...

Explaining Down Syndrome to Children

Pamela Wilson, Bella Online, 12th August 2015

... The first children who may hear a parent's explanation of what Down syndrome is and what it means may be the brothers and sisters of a newly diagnosed newborn. Depending on the age of the older sibling, any new baby taking parents' full attention and time may be seen as an intrusion or unwelcome visitor. It's good to keep in mind that Down syndrome means very little to the brothers and sisters of a newborn, and often babies with Down syndrome are just like babies without Down syndrome to their siblings ...

Golly Gee Willikers

Dave Hingsburger, Rolling Around in My Head, 12th August 2015
... Anyone who has followed my work, or read my book, Just Say Know, will know that I don't like and won't use the term 'vulnerable populations' or ever refer to a specific group of people as 'vulnerable.' I think doing so is kind of a massive linguistic form of 'blaming the victim.' It makes 'something about them' the reason 'something happens to them.' It makes the assumption that a person is, and always will be, vulnerable due to a state of being. The only response to the 'status' of ' one of the vulnerable' is the 'status' of 'the protected.' The term focuses our attention on what we do to protect the forever, and ever, vulnerability of the other. The term focuses our attention away from the fact that 'we, the protector' are also 'we, the abuser' ...

The future of assistive tech is surprisingly simple

David M Perry, AlJezeera America, 17th August 2015
Everyday technologies that enhance accessibility are far more helpful than miraculous, high-tech interventions ...

A lesson in inclusion delivered to trainee teachers by those who know
Kathy Evans, Sydney Morning Herald, 16th August 2015
Five actors with a learning disability are helping trainee teachers at Deakin University learn about what it is like to be different and what it might mean for the classroom ... Whilst information-based courses assist would-be teachers develop an understanding of what is required intellectually, they do not help them overcome their own deeply-held prejudices or challenge outdated attitudes ...

Blind Kenyan father ordered to leave Australia

Ryan Emery, SBS, 18th August 2015

Doctor Siyat Abdi has joined a long line of migrants who’ve been rejected for a visa because they failed to meet the health criteria. In Kenyan-born Dr Abdi’s case, it’s because he’s blind. For others, including Perth doctor Nora Aziz, it was because their children had cancer or Down Syndrome.

But according to the Migration Act, an applicant must not, even hypothetically, need health care or community service that would “result in a significant cost to the Australian community in the areas of health care and community services … regardless of whether the health care or community services will actually be used.”

Dr Abdi, who has been in Australia for more than 11 years, said it made him angry to be rejected because he was blind. It’s a condition he’s managed for all of his 47 years ...

Farewell to Jane Fraser AM

NSW Council on Intellectual Disability (blog), 20th August 2015
We lost an outstanding advocate for people with disability with the death of Jane Fraser in May. Jane was one of the leaders amongst the parent advocates who became very vocal in the 1980s in pursuing a good life in the community for all people with disability ...