Weekend reading and viewing: 7th - 8th September 2013

I have Down syndrome and run my own business
Maureen Wallace, She Knows, 2nd September 2013

A Down syndrome diagnosis doesn’t mean a child will live with his or her parents forever and never have a job. In fact, individuals with Down syndrome are breaking stereotypes into bits and pieces — from running a restaurant to launching a pottery business.
Be sure to check out all three business owners' stories by clicking through the page links 1 - 3

Sound minds, double standards and the right to vote
Nathan Despott, Asher Hirsch and Daniel Leighton, Ramp Up, 6 Sep 2013

... Few people with an intellectual disability have fail-safe plans that will guide them through the enrolment, preference determination, transport and voting processes then ensure that it will all be repeated at future elections. This lack of support translates into low voter registration and even lower turnout ...

I'm no Oprah but my daughter has taught me empathy

Brendan O'Connor, Irish independent, 1st September 2013
... I'm not saying I'm Oprah now, but at least I know now that what matters in this world is not how you treat the important, influential people, but how you treat those whom society might regard as the least important and influential ...

Why People Have Such High Expectations of Parents of Children with Special Needs
Eliana Tardio, Living and Loving with Down syndrome, 29th August, 2013
What should you expect from a parent of a child with special needs? Nothing special and nothing different than any other parent. Expect to meet another devoted parent, fighting hard to make the best of life with his or her family. We are neither saint nor angel, we feel just like everybody else with some extra special challenges.


Farragut boy recognized for "surfing" picture
Emily Stroud, wbir.com news, 27th August 2013

Great local news video of a 10 yr old with Down syndrome wake boarding, and interview with his family. Story behind a Times Square Buddy Walk photo.

What does laundry detergent really mean?Margaret Bender, The Extraordinary Life of an Ordinary Girl, 1st September 2013
The conversation started with "I need laundry detergent" and ended with "I don't want to be independent".  Over the years the words have changed but the meaning is always the same. Something is not right in Alex's world. Alex handles information differently than I do and differently than her siblings. This does not mean her feelings do not get hurt or she does not recognize when something is not fair - it merely means she needs time to formulate the language needed to share her hurt.

Why getting a slap in the face by the school counselor was good for me
Count to Ten, 30th August 2013
Ok … Not literally. The school counselor didn’t actually put her hand across my face, but she did send a jolt through me and ROCKED MY WORLD!

Down Town Ball

Down Syndrome NSW wishes to thank Olivia Hurstfield, and her team of organisers and participants involved in putting on a great night in Newcastle last Saturday. A wonderful time was had by all, including an auction, dining , dancing, being entertained by the Waltzing Matildas, but one of the best things about the night was raising community awareness in the Hunter Region.

You are welcome to send your photos from the might to the Down Syndrome NSW office, at admin@dsansw.org.au

Jess Thomas, DS NSW Hunter ambassador Ben Rogers and Michael Wheatley joined the fun at the DownTown Ball in Newcastle last weekend, that raised funds to support people with Down syndrome in the Hunter region.Jess and Michael both perform with the Waltzing Matildas.

2013 Down Syndrome Podcast Series from Children’s Hospital of Pittsburgh

The 2013 Down Syndrome Podcast Series provided by Children’s Hospital of Pittsburgh hosted by Kishore Vellody, MD, medical director of Children’s Down Syndrome Center is available for listening online, and by subscription via iTunes:

The podcasts will focus on a wide range of issues related to down syndrome for parents, caregivers, educators, and medical professionals. Podcasts are updated regularly and will feature discussions with medical experts in cardiology, otolaryngology, sleep disorders, infectious diseases, and more.

A transcript is provided for each podcast.

In the introductory podcast, Kishore Vellody explains that his brother has Down syndrome, and growing up with him  was a strong influence in his choice to study medicine and practice paediatrics.

Service Support and Success: men's health issue; vacations issue

The latest two issues of the excellent (and free!) online newsletter for support workers, from Canada, Service, Support and Success, edited by Dave Hingsburger and Angie Nethercott, both address matters important to people with disabilities, as always.

Willie Wellness: What You Need To Know In Order To Provide Effective Care, Down There, For Men With Disabilities
Dave Hingsburger, Service, Support and Success, Vol 2, Issue 9
It’s not uncommon for direct support professionals to be providing support for people twice their age and people of opposite gender. Questions from a 50 year old woman to a 20 year old man, or the reverse, as was the case with the woman who came into my office, can cause embarrassment and a lack of practical knowledge. This article is one that begins to discuss providing men with support specific to their needs as men. The subject of men’s health is a huge one, so this article is just a start. Follow up articles will deal with other health issues and with more “how to’s” for teaching. Consider this just a fact sheet about men’s private parts and information that you may need to provide information ...

Inclusive, Exclusive Vacations: Planning Vacations for People with Significant NeedsAngie Nethercott  and Dave Hingsburger, Service, Support and Success, Vol 2, Issue 8
... 'There was a man I worked with more than ten years ago now. He always wanted to go on a holiday, but never did while I was there. I always said that he shouldn’t go on a vacation because he had bad behaviours and that he would not be able to cope with change.

All of us staff agreed and we said that it was for his own good that he stay at home. In my heart, I knew that the reason we said this was because it would of made a lot more work for us staff. Every summer he was really sad because all of his friends got to go on holidays, but he stayed home. After I left, a bunch of other staff left too. The new staff took him on lots of vacations. I think you should write about how even if it’s a lot of work, people should get to have a holiday. What I did was wrong and I’m sorry'...

• Link to back issues of Service, Support and Success on the Vita Living Services website, here

'The Interviewer' at Canberra Short Film Festival

Several people with Down syndrome played on-screen and off-camera roles in the international award winning Bus Stop Films production, The Interviewer ...

Our most recent short film project, The Interviewer (Bus Stop's largest short film project to date) has been tearing up the international festival circuit getting fantastic reviews and responses from audiences all around the world! ... Bus Stop Films

• Making of The Interviewer
• Trailer
• Bus Stop Films on Facebook

And now The Interviewer is on the program for the 2013 Canberra Short Film Festival ...

6.00 pm, Saturday 14th September 2013 

Dendy Cinema Canberra

• Book your tickets here
• Program

Dr Sigfried Pueschel - father, doctor, researcher, writer, humanitarian, leader, 1931 - 2013

The international Down syndrome community has lost one of its leading lights with the death yesterday of Dr Sigfried Pueschel in Rhode Island (USA). Dr Pueschel contributed  for more than fifty years to the well being of people with Down syndrome all over the world as an expert paediatrician, a writer, a researcher, by speaking with both professional colleagues and families at large and smaller events, as an active participant in both professional and family support organisations, and as a fellow parent of a son with Down syndrome.

In a 1999 speech, he said of his son Christian, who died at the age of 33 in 1998,

"I learned from my son Chris and from so many other individuals with Down syndrome I've had the privilege to care for during the past 40 years that there is a goodness and warm sense of humanity in our children that must be protected and never betrayed. Chris and other persons with Down syndrome taught me about their outstanding human qualities, their foremost contribution to society and their passion for life." 

In July 2013, the (US) National Down Syndrome Congress recognized Dr. Pueschel with a Lifetime Achievement Award, at its annual convention.

Dr Pueschel was greatly loved and respected by the families he cared for, those worldwide who benefitted from his broader work, and by his colleagues.  He will be greatly missed, but leaves a lasting and precious legacy in his work and ethos.

The Massachusetts Down Syndrome Congress has published a detailed tribute here, and a short biography is on the Down Syndrome International website, here.

• Video of the presentation of Dr Pueschel's NDSC Lifetime Achievement Award, July 2013
• NDSC's tribute to Dr Pueschel, 5th September 2013

Dr Brian Chicoine, Director of the Adult Down Syndrome Centre in Chicago, wrote this lovely tribute to Sigfried Pueschel today:

Whenever he spoke at a conference, in a question and answer discussion, or simply over lunch, I (and many others) listened intently. To me, he was the face of the community of practitioners serving people with Down syndrome. He was a "go-to" guy when looking for information on Down syndrome-- almost whatever topic I researched there would be at least an article or two written by Sig. His was the first book on Down syndrome I read. I liked him, I respected him, and I emulated him. Without sounding trite, he was a hero of mine and I will miss him.

• Facebook memorial page posted by Dr Pueschel's family


• In Memory of Dr. Siegfried Pueschel - Down Syndrome Medical Interest Group (USA) - moving tributes from his colleagues.

Inclusion >> community >> inclusion >> community >>

Two perspectives on the benefits of inclusive communities - reaching the same conclusion by different routes:

Waisman early childhood alum pursues career of caring

Susan Lampert Smith, University of Wisconsin-Madison News, 20th August 2013
In addition to the low teacher-to-child ratio ... the entire family benefited by having friends and teachers with disabilities.

The Letter
Dave Hingsburger, Rolling Around in My Head, 21st August 2013
Those who decry the words of the letter ... will you be fighting for employment rights for people with disabilities? ...  where is the consumer demand for seeing diversity in the workforce in stores, restaurants, government offices?

2013 Annual General Meeting

We invite you to attend the 

34th Annual General Meeting

 of the 

Down Syndrome Association of NSW Inc.

10.00 am 28 September 2013

Parramatta RSL (cnr Macquarie and O'Connell Sts) Parramatta

At this year's AGM you will have the opportunity to connect with other members, meet the new Board and review the past twelve months of Down Syndrome NSW.

Following the close of formal business, Christine Regan will facilitate a discussion on the NDIS / DisabilityCare Australia.

Christine Regan is a Senior Policy Officer at the Council of Social Service of NSW (NCOSS), Vice Chair of the NSW Council for Intellectual Disability and Vice-President of the National Council on Intellectual Disability. Since June 2011, she has convened the NSW Disability Network Forum. Last year, Christine completed a three year term as a Board member of the NSW Anti-Discrimination Board. She is a parent member of Down Syndrome NSW; her daughter, Erin is 35. Christine writes My Word! a regular reflection on disability and society for Interaction magazine.

For catering and seating purposes, please RSVP to events@dsansw.org.au or call the Office on 9841 4444 if you would like to attend the 2013 AGM.

The Parramatta RSL is easily accessible by train, bus or car. To plan your trip and view public transport timetables please visit www.131500.com.au or call 131500.

Fewer people with Down syndrome live in the US than previously thought

This blog post was originally published in January 2009, and remains one of the most visited, according to Google's statistics (possibly by students looking for statistics for assignments).

We have updated the from time to time, and have now added a link to the most recent revision of estimates of the number of people living with Down syndrome in the US. It is now thought that previous estimates were 25 - 40% too high, and did not account for all the factors that determine population numbers.

• For all posts on this blog about statistics in NSW, Australia and internationally, click here

'Circles of Support' webinar: October

• Download this flyer as a .pdf here

Fathers Day 2013

 

Weekend reading and viewing: 31st August - 1st September 2013

The mom's response to that shocking autism hate letter about her son

Love that Max, 28th August 2013

... If Max's sounds bother someone, I'd hope that person would let us know in a respectful way. Give us a chance to handle it instead of being cowardly about it. I'd rather people bring things out in the open. Sometimes, kids come up to me and ask "Why does he talk funny?" The parents are embarrassed. But if the mom isn't going to talk properly to a child, or teach him that kids with autism are not contagious, I will!

Your worst nightmare
Ginger Stickney, Green Ginger Tea, 26th February 2013
The ultrasound tech asks what we're looking for and I explain the midwife's concern and my own. She looks at my chart, and says "The baby has Down's." I am not at a point where I feel comfortable correcting people so I just nod. "That was my worst nightmare" she says, "when I was pregnant with my last child." I don't know what to say. I am a little shocked, a lot sad, but not really offended. Maybe I should have been. 

Counseling for Prenatal Testing?
Huffpost Live, 21st August 2013 (Video: 31m 31s)
As prenatal testing for Down syndrome becomes more common, many women will face an array of information about their unborn children. But this confronts expecting mothers with difficult choices. How do counselors help women make these decisions?

CinemAbility director Jenni Gold on Hollywood and disabilities 

Bryant Frazer, Studio Daily, 26th August 2013
CinemAbility is a new documentary looking at how films and television shows have portrayed disabilities through history. Combining interviews with actors ... with supporting film clips ... director Jenni Gold shows some of the ways that the media and popular culture have impacted society's attitudes toward people with disabilities.

GONE: 150,000 fewer people with Down syndrome in the U.S.

Mark Leach, Down Syndrome Prenatal Testing, 26th August
The estimated number of people living with Down syndrome in the United States has been 400,000. This number has now been reduced by almost 40 percent. The number 400,000 was based on birth estimates: take whatever the birth estimate was, apply it as a percentage to total number of births and total number of lives, and 400,000 was the number that was arrived at. Last month, the Journal of Pediatrics published online a study that revises this estimate based on two key factors. The new study has already resulted in a revision on the Centers for Disease Control website, which lists the highlights.

Anger
Jen Logan, Down Wit Dat, 26th August 2013
... anger will be the fire that stokes the boilers into action. There is a lot of work to be done. I don't think that it is too much to ask that September contains less stories of hate and ignorance. Or that the stories that feature disability in every Lifestyle section of every mainstream publication not be written by the able-bodied or parents that haven't fully accepted their children with disabilities. I don't think that it is too much to ask that equal access and inclusive education be automatically available. I don't think that it is too much to ask that you stop labelling my kid, stop putting him in a little box that says "happy moppet" on the outside and expecting him to act a certain way, just because you believe it makes it easier for people to accept him.

What it takes to improve the lives of disabled people in remote communities: a case study from Warburton

Melissa Sweet, Croakey, 21st August 2013
A program to bring families and health professionals together on Country has been helping disabled people in a remote community, according to a presentation at the NACCHO Summit in Adelaide ... The program helps to build trust, relationships and respect, and supports participants to identify the solutions that will best help them as “the experts of their own situation”.

The words that batter

Craig Wallace, Ramp Up, 30th August 2013
After spotting a video on Labor social media sites using the word 'retard', Craig Wallace asks why we still tolerate disability being used as a sledge. ... Unlike the debates we might have amongst ourselves about terms like disabled, impaired, 'person first language' or even terms like 'crip', which has been appropriated by some people with a disability, the term 'retard' has a deep, dark place in the inner circles of disability hell.

'Retard' is the disability equivalent of the 'n' word. It is never used as anything but a weapon to demean, bully and slander people based on disability. It plumbs depths far below 'politically correct' language ... Disability isn't a sledge any more than gender, ethnicity or sexuality. We deserve better and should call it out regardless of who says what about whom.

Disability does not end with DisabilityCare

Shawn Burns, Ramp Up 28 Aug 2013
As the federal election draws closer, Shawn Burns reminds us that the disability battle will not be won until all elements of the National Disability Strategy are realised.

Ethan Saylor - campaigning for justice

Campaigning continues for a full investigation into the death of Ethan Saylor, a young man with Down syndrome, in shocking circumstances, in the US in January. This is not easy reading.

I Have a Dream – Justice for Ethan

Global Down Syndrome Foundation, 28th August 2013
... Regardless of where one feels blame is due in the “Stand Your Ground” case, (Trayvon) Martin’s death has led to national calls for a review of the laws. Should they be stricken? Or altered? Does anyone really feel that an unarmed teenager is now justifiably deceased?

Ethan Saylor’s death deserves an equally important national dialogue. There are now national calls for better training for law enforcement officers on how to deal with the differently-abled. But the question remains, “If Ethan were ‘typical,’ would there be criminal charges filed or at least an independent investigation into his death?”

Justice for Down syndrome man who died in movie theater

David M. Perry, CNN, August 29, 2013
Police violence against people with disabilities is not uncommon, but the cases don't seem to get a lot of publicity. Most people see the disabled as, at best, passive victims, objects to care for, perhaps to love, but not people with whom we automatically identify. This is a mistake. We are all only temporarily able-bodied. Accidents, illness, and age wait for us all. What happened to Ethan Saylor could happen to you.

Step Up for Down Syndrome

Thank you again for your participation and support of Buddy Walk and Step Up and Walk last year! Thanks to your incredible online fundraising efforts, over $125,000 was raised in total to support the participating State & Territory Down syndrome associations. Without your support, this would not have been possible.

In 2013 we are hoping to smash that figure by launching a new national fundraising event – Step UP! for Down syndrome.

Step UP! for Down syndrome is a new event developed by Down Syndrome Australia, the national voice for people with Down syndrome and their families, together with its eight members – the State & Territory Down syndrome associations.

Together we have set an ambitious national online fundraising target of $200,000 and we hope we can count on your help and participation again to assist us in reaching this goal.

Already Step UP! for Down syndrome is shaping to be bigger and better this year with participation from every Australian State and Territory and the opportunity for national sponsorship. Please find attached your ‘Save the Date’ card with all the details.

We will be in touch regarding some exciting prizes for the top Step UP! fundraisers and the biggest teams!

The online registration and Step UP! for Down syndrome 2013 website have been launched.  This year, registering to attend the event and creating a Step UP! page are both part of the one simple online process.

Step UP! for Down syndrome will be held in the following NSW locations:

Sydney: Sunday 13th October
Wagga Wagga: Sunday 20th October 
Illawarra: Sunday 27th October

More details can be found on our Step UP! for Down syndrome website.

If you have any questions about this year’s event, please do not hesitate to phone (02) 9841 4404 or email stepup@dsansw.org.au

Thank you again. We look forward to seeing you there!

Matthew Kelly
President, Down Syndrome NSW

Angus Graham
Chair, Down Syndrome Australia

Federal election

All You Need to Know About Voting

DiscCo: Discussing all things disability, 
Thursday, August 22, 2013

You really can’t miss that we have an election coming up on 7 September to decide who will be our Government and local member for the next few years! So how do you make your voice heard and ensure things that are important to you and your community are put forward?

PWDA LinkUp #149 August 2013 
Newsletter of People with Disability Australia Inc

This Election edition of LinkUp is about the upcoming Federal Election. Voting is an important democratic right for all of us and this edition contains our four key messages for the 2013 Federal Election. People with Disability Australia’s election platform focuses on sustaining the NDIS, ending the barriers, stopping the abuse and making the Convention real, as realised through the National Disability Strategy.
We have taken a nonpartisan approach in developing this edition of LinkUp as well as our campaign strategy. This edition contains statements from the major parties on their respective disability policies in order to help you make an informed decision on Election day. We have also included information on accessible voting ... Guest Editor, Fiona Givens

Mates

Sam Paior posted this fabulous photo on the Down Syndrome Australia Facebook page, and has kindly agreed that we could share it too.  Soon it will have a much wider audience in New York:

If you are in New York City on Saturday September 21st, look up at the biggest screen in Times Square and you might catch this photo of my boy Ben, taken at the Scout Jamboree in Queensland earlier this year.

It will be part of a video to support Buddy Walk and the kickoff for the US National Down Syndrome Awareness Month. Ben was born in the US and is a dual Australia/US citizen.

Australian Down Syndrome Conference 2014

Announced last night by Down Syndrome Australia:

The inaugural Australian Down Syndrome Conference will be held in July 2014, in Canberra! 

The conference is for people with Down syndrome, their families and interested professionals. Child care will be available.

Date and details coming soon. Follow Down Syndrome Australia on Facebook for details as they are released, and/or the Down Syndrome Australia website.

Sophie's photograph of former PM now in Museum of Australian Democracy collection

The Museum of Australian Democracy ...  "recently acquired a rather lovely new item: a photo of Prime Minister Julia Gillard, taken by 12 year-old Sophie Deane, which now forms part of the museum’s digital collection.

Sophie, who has Down Syndrome, snapped Prime Minister Gillard in a candid moment on 4 May this year" ... read the story her on the museum's blog post from yesterday.

Sophie's Mum, Kirsten Deane, wrote this Facebook post for Down Syndrome Australia:

Today the Museum of Australian Democracy added a new photo to its collection - Sophie's picture of Julia Gillard. 

I told the story of this photo last week when I addressed the 5th Annual Pediatric Bioethics conference (I know, I know, I hang with the fast crowd). I had been asked to give a "parent's perspective" on prenatal diagnosis. I told this story because more than anything I wanted them to know that for all our medical advances, for all our knowledge - you just never know. 

For all the predictions that were made at the time of Sophie's diagnosis no one predicted that she would play a small part in the introduction of a revolutionary social policy reform that would transform the lives of thousands of people around the country. No one predicted that she would develop a love of photography (which we hope will continue to grow). And no one mentioned that she would take a photo that would one day end up in a museum. 

No one predicted these things because the truth is we all just don't know. So go Sophie - you just keep showin' em.

• The Hoopla also reported the acquisition here.

PWD: 2013 Election Platform launch and Disability Q & A

People with Disability Australia invites you to attend a

2013 Election Platform launch and Disability Q & A 

withTim Ferguson and special guest panellists 

Senator Mitch Fifield, Senator Rachel Siewert 

and Senator the Hon Jan McLucas

5.30pm for a 6pm start - Friday 30 August 2013

Mercure Hotel, 818-820 George Street
Haymarket Sydney NSW

The event will be followed by light refreshments.

RSVP: Wednesday 28 August 2013

Webcast: This forum will be webcast online. If you can’t make it in person, you can still participate. You will need to register in advance for the webcast. Click here to register to access the forum online on the night.

• Click here for further information about the event

Speech Pathology Week/Hearing Awareness Week

This week across Australia two awareness campaigns focus on closely related matters of importance to people with Down syndrome:

Hearing Awareness Week

The interactive 'How loud is it?' gauge on the home page shows you how loud everyday sounds are, and allows you to compare them - you might be surprised. Lots of other useful resources are linked from the website.

Has the person in your life who has Down syndrome had a hearing assessment in the last two years?

Hearing is one of the major determinants of speech development in people with Down syndrome.



Speech Pathology Week

... Speech Pathology Week this year is part of a larger international communication - along with some of our sister organisations around the world, SPA is working to create a year dedicated to raising awareness of communication disability – and its next year! 2014 is The International Communication Project and as a global profession, we will firmly put communication disability front and centre on the world health stage.