Down Syndrome Australia Statement on Australian Story, 3 October 2016

Down Syndrome Australia is the peak organisation for people with Down syndrome in Australia. A key part of our work is raising awareness and understanding about the rights of people living with Down syndrome.

ABC Australian Story is airing a story on Monday night about two adults with Down syndrome who have chosen to marry and live together. The story also covers the very personal decision of these two people about whether or not they will have children and their family’s response to this decision. Down Syndrome Australia will not comment on the details of this specific family situation and the complex and deeply personal decisions that are being considered. 

Down Syndrome Australia believes that people with Down syndrome should be supported to have the same rights, responsibilities and opportunities as other people in the community, including in making decisions about who to marry and whether or not to have children. 

The UN Convention on the Rights of Persons with Disability Article 23 specifically protects the rights of people with disabilities to make decisions about whether or not to have children. People with Down syndrome may need additional support and appropriate information before making a decision about whether or not to have a child. 

This may include consideration of what services and support will be available after the child is born and how they will meet the needs of a child. These are the same issues that people without a disability also need to consider before deciding to have a child. 

Families may not always agree with the decision of the person with Down syndrome but as adults they have the right to make that decision regardless. 

More information about the work of Down Syndrome Australia and the contact details for local support and services can be found at www.downsyndrome.org.au

Media Contact: Angus Graham OAM, Chairman, DSA. 

info@downsyndrome.org.au

mobile: 0434 079 702

On identity and representation

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 ...

• Repost, in case you missed it last weekend's 'Reading and viewing' post

Believing in ourselves as disabled people

Social Skills for Autonomous People, 21 June 2016
As disabled people, it can be very hard to learn to believe in ourselves. We’re often taught not to.

We’re told over and over “believe in yourself, and you can do anything!” and that if we work hard, we can overcome disability. That sounds positive, but it actually teaches us that we’re not worth believing in as the people we really are.

In the name of believing in ourselves, we’re told to ignore key facts about ourselves. We’re taught that believing in ourselves means that if we ignore disability as hard as possible, it will go away and we’ll be ok. But ignoring reality doesn’t change it. No matter how we feel, no matter what we believe, our bodies exist and matter. Our limitations stay important ...

Screen Australia diversity report finds Australian TV still lacks colour
Karl Quinn, Sydney Morning Herald, 24 August 2016
A groundbreaking report into Australian TV drama finds that better quality doesn't necessarily equate to more diversity ...

The Dos and Don’ts of Writing About the Disabled
Nicola Griffith, Literary Hub, 23 August 2016
Recently I have read several articles about disabled people by non-disabled writers. The authors have clearly projected their own fears and prejudices onto the subject of their piece, and spoken for them from that place. If I could say one thing to those authors it would be this: Do not assume that empathy equals experience. You might think you know what it’s like, but you don’t ...

Ideas for the Next Generation of Disability Activists
Peter Gibilisco, Probono News, 25 August 2016
Meritocracy is a belief that seems to me to still be alive and well in the senior management of disability support. It also seems to drive many aspects of public policy, particularly when appeals are made to “equal opportunity” ...

What Disability Means
New York Times, 25 August 2016
Last week, The Times opened a series about disability, broadly considered, with an essay about disability, pride, and identity by Rosemarie Garland-Thomson. We asked readers to share their own stories in the comments and on Facebook ...

Local elections: easy read voting guide from NSW CID

NSW Council on Intellectual Disability provides an impressive range of information and resources about the broad functioning of our communities for the benefit of people with intellectual disability, much of it through social media channels, making it readily available. Inclusion at work.

In case you are not following NSW CID on Facebook (and we would recommend that you do if you use Facebook), here is their helpful message  about the September NSW local council elections:

Did you know that many local Councils are going to an election on 10 September 2016? 

NSW CID has produced the following Easy Read guide for the NSW Electoral Commission. 

• You can download the guide on this link  

Councils that were not amalgamated will go to an election on 10 September 2016. 

Councils that were amalgamated go to an election in 2017.

What now: responses to abuse and neglect reports

We count what matters, and violence against people with disability matters
Anne Kavanagh and Sally Robinson, The Conversation, 27th November 2015
The Senate inquiry into violence, abuse and neglect against people with disability heard many horrific stories of violence experienced by adults and children with disability. They experience violence at the hands of intimate partners, parents, informal carers, service providers, teachers, medical professionals, co-residents in institutional settings, and others ...

(The photograph at the top of this article is of Jackie Softly, 

long-standing member of Down Syndrome Western Australia, 

and national advocate.)

The abuse of people with disability is a national shame that we're ignoring
Rachel Siewert, The Guardian, 26th November 2015
Right now there is a national shame hanging over our communities regarding treatment of people with disability in Australia. We would like to think that the notion of widespread violence, abuse and awful mistreatment would disgust the broader community and prompt us into action ...

Damning disability abuse report uses ACT death as warning
Christopher Knaus, Judith Ireland and Rachel Browne, The Canberra Times, 26th November 2015
A damning report on the neglect and abuse of people with a disability has used the choking death of Canberra woman Stephanie Fry to warn of the dangers of staff turnover and the increasing reliance on casual support workers ...

Advocacy at work

Incidents of discrimination and bullying are still everyday events in the worlds of many people with disabilities, and the need for swift, responsive and effective advocacy exists alongside broader campaigns for inclusion and acceptance, as these two examples show:

When a journalist posted an insulting hashtag on Twitter earlier this week, in relation to comments about the lack of a Minister for Disability in the new Federal Cabinet, the NSW Council for Intellectual Disability came out to highlight, correct, advocate, and to offer disability sensitivity training. This morning, NSW CID posted on Facebook:

Good News!! - an update on the ‪#‎Rword‬ post!
Yesterday we received an apology from both the journalist and The Australian newspaper. Plus an apology on twitter! The paper said they will take us up on our offer to work with them on some disability awareness strategies.

Thanks to everyone who liked and shared our post. Lots of people agreed with us - don't use the #Rword 

Together we have made some noise and some progress! Well done and thank you!

NSW CID

You might also have been aware of an example of blatant discrimination that occurred in Brisbane

recently, and 'went viral' on social and other media. In this case, the young man's family and the media were his advocates, and an apology has been issued. Down Syndrome Australia CEO, Ruth Weber was interviewed on ABC radio:

• JB Hi-Fi accused of blocking man with Down syndrome, Natalie Bochenski, Brisbane Times, 22nd September 2015

• The Project, Ten-Play, 22nd September 2015

• JB HI-FI Statement, issued 22nd September 2015

JB Hi-Fi is committed to providing all customers with the best possible shopping experience. 

We have investigated the incident involving James Milne and his family at our Mount Ommaney store. 

We apologise to James and his family for any distress he has suffered as a result of this incident. 

JB Hi-Fi and the manager of our Mount Ommaney store believe that we could have managed this in a better way in the interests of James and his family. 

JB Hi-Fi is committed to learning from this and improving our customer experience across all of our stores. 

To support this we are reviewing our customer policies to make sure that they reflect best practice. 

Richard Murray CEO of JB Hi-Fi said “We would like to apologise unreservedly to James. We should have done better yesterday. We are going to make sure that we learn from this and do better in the future. I have sent a personal letter of apology to James and we are continuing to endeavour to contact the family to apologise directly.”

2015 Trevor Parmenter Lecture

The Centre for Disability Studies is pleased to announce the 2015 Trevor Parmenter Lecture.
This year Professor Dan Goodley, University of Sheffield UK and Dr. Katherine Runswick-Cole, Manchester Metropolitan University have accepted to give this lecture in honour of the contribution made by Emeritus Professor Trevor Parmenter AM to research, policy and practice within the disability field both in Australia and internationally.

The lecture topic, The potential of dis/ability to rethink the working of civil society, is in keeping with Trevor Parmenter's commitment to making the world a better place for all.

For information flyer, online booking / or registration form click here

The event will be held on:
Friday 31 July 2015
5:00pm to 7:00pm

Centre for Disability Studies
Auditorium, Ground Floor, Medical Foundation Building
92-94 Parramatta Rd, Camperdown NSW 2050

Free entry but donations welcome.

Enquiries: stephen.curtis@sydney.edu.au  or 02 9036 3600

Cátia Malaquias at the UN in Geneva

Cátia Malaquias is the mother of a young son with Down syndrome, from Perth. You might recognise her name from her campaign to have people with disabilities included in advertising images, to represent the real community.

On 20th March, Cátia represented Down Syndrome Australia at the United Nations in New York supporting the presentation of The Special Proposal, a World Down Syndrome Day campaign with CoorDown Onlus Coordinamento associazioni persone Down and other international associations.

Yesterday,  Cátia continued her advocacy on behalf of Australians with Down syndrome with the United Nations in Switzerland:

Why I am in Geneva Today
Cátia Malaquias, Attitude Foundation, 15th April 2015
This morning, I am in Geneva, Switzerland, to attend the Day of General Discussion (DGD) at the United Nations. This meeting is being held with State parties to the Convention on the Rights of Persons with Disabilities, human rights and disability organisations and other interested parties, arising in part from the concern of the UN Committee on the Rights of Persons With Disabilities that the exclusion and discrimination experienced by children and adults with disability hinders broader social and economic inclusion in their later lives, in all spheres ...

... Why have I come here? Because I am deeply disappointed by the submission made by the Australian government to the Committee for the DGD. ... (that) ... merely asserted that the legal framework for its education system was "consistent" with the Convention. This assertion carries with it the claim that Australia is complying with its obligation to “ensure an inclusive education system”. Australia’s submission then goes to considerable lengths to emphasise that the Committee should read the obligation to provide "inclusive education" as depending upon "available resources" and being only to the extent of "reasonable accommodation" ... read all of Cátia's guest post here, including a link to her submission to the UN

• See Catia's photos from the occasion on her Facebook page, 17th April 2015

NSW State election 2015 page

Information about the NSW State election scheduled for 28th March 2015 is now posted on the NSW State Election 2015 page, linked this tab under the blog banner, for easy reference.

Links and information will be added as they become available. Today's addition is a link to:

Easy read guides on registration and voting, from Elections NSW

Attitude TV series: 27th December debut

Attitude Foundation is partnering with award-winning production company Attitude Pictures to
deliver 26 documentaries about people with disability for ABC television.

"As a person with disability and having been the Disability Discrimination Commissioner for eight and a half years, I know the importance of telling compelling stories about disability when engaging with the community." Graeme Innes AM

The documentaries are part of an international series that has screened in 26 countries. The documentaries will focus on compelling stories told with insight and understanding.

Attitude debuts on ABC TV 1 on Saturday 27th December at 6.30 pm

Made You Look! 2014 out today

The 8th edition of Made You Look is released in print today.

Almost 200,000 Made You Look magazines will also be randomly inserted into most copies of the Daily Telegraph today (1st December), or you can access it online here.

Pozible campaign to complete 'The Talented Mr Digby'

The Talented Mr Digby is a feature documentary about three friends with an intellectual disability on a quest to become independent.

Digby Webster is a 27-year-old talented artist who dreams of one day moving out of home. His friend Tom Elenor fantasizes about fame and stardom, and award-winning actress Tracie Sammut now wants to teach other people with a disability and put a stop to industry stereotyping and typecasting with disability.

The producers have launched a Pozible campaign (online fundraising) to complete the project, which is now in post-production.  You can pledge now through the Project's Pozible Campaign Page, if you would like to support it.

• The Talented Mr Digby on Facebook

Opal Card - pensioner concession cards now available

Transport for NSW has recently released the Opal Card for pensioners, including those with a Disability Support Pension. Other concession card holders can apply 'later'. 

Many people with Down syndrome and other intellectual disabilities use public transport regularly. Not having to handle money for fares for every trip, and not having to ensure they have the 'right' money will be welcome.

The Opal card is being rolled out across public transport in Sydney, the Blue Mountains, Central Coast, Hunter, Illawarra and Southern Highlands. The Opal card can currently be used on ferries, trains, and many buses - check online for routes that are 'Opal enabled' so far, and for timelines for the full roll-out.

You can apply for your card online, by phone, or at an Opal card retailer. When you apply online, your eligibility is checked online as part of the process (via your pension/concession card number), very quickly. The card is then mailed to you within a few days, you can activate it online and begin to use it on public transport displaying the Opal logo.

There are a number of options for ordering, initial payment and 'topping up', so set aside some time (it took us about 20 minutes online, and the card arrived in three days) to go through the process and decide how you want to manage it.

Advocacy and rights: news and opinion

We need a voice for people with disabilities
Graeme Innes, Sydney Morning Herald, 19th May 2014
... I am writing to you about your comments on Thursday, after we learnt the government no longer intends to renew the position of Disability Discrimination Commissioner with the Human Rights Commission. You said: "Lots of people are discriminated against. Why don't we have a gay rights commissioner, or a left-handed commissioner, or a short persons commissioner, or a commissioner for people who aren't good-looking."

... Mr Creighton, to quote from my friend Rachel Ball at the Human Rights Law Centre: "It is easy to stand atop a mountain of privilege, and tell those at the bottom of the mountain that privilege is irrelevant."

Facing up to violence against women with disabilities

Clem Barstow, Sydney Morning Herald, 15th May 2014
When she went to the police to report intimate partner violence, Rebecca* was met with a stark response: “They didn’t believe me.”
This was not solely because of institutionalised mistrust of victims of sexual violence, but because Rebecca is a woman with an intellectual disability who experienced intimate partner violence from a partner who also had an intellectual disability. Not being believed is a common thread through much of Rebecca’s experience dealing with both police and support services ...

The Voices Against Violence report was released on 15th May 2014. For more information, and to download the relevant papers, visit Women with Disabilities Victoria, Office of the Public Advocate  and Domestic Violence Resource Centre Victoria.

How Misunderstanding Disability Leads to Police Violence
David Perry and Lawrence Carter-Long, The Atlantic, 6th May 2014
Americans with disabilities are victims of violent crimes at nearly three times the rate of their peers ... Law enforcement officials expect and demand compliance, but when they don’t recognize a person’s disability in the course of an interaction, the consequences can be tragic ...

It's time to stop using the 'R' word

Stuart Rollo, Daily Life, 4th May 2014

... As the crowd laughed uproariously at the suggestion that the well-known comedian may be mentally disabled, the hearts of family, friends, carers, and colleagues of anybody with a disability, and most importantly any viewer with a disability themselves, collectively sank.

Mother testifies before Senate panel about son’s death at Frederick deputies’ hands
Teresa Vargas, Washington Post, 30th April 2014
“I want to tell you firsthand that today’s hearing will save future lives,” Saylor said.

Disability no justification for denying people’s right to make their own decisions
UN Human Rights, 22nd April 2014
People with disabilities have the same rights as everyone to make decisions about their lives, including the right to take risks and make mistakes, a UN committee has stressed in new guidelines on implementing the Convention on the Rights of Persons with Disabilities.

National Framework on Restrictive Practices
Dept Social Services (Disability and Carers), 15th April 2014
The National Framework for Reducing and Eliminating the Use of Restrictive Practices in the Disability Service Sector is now available to read on the Dept of Social Services website. The National Framework was endorsed by Commonwealth, State and Territory Disability Ministers on 21 March 2014 and focuses on the reduction of the use of restrictive practices in disability services that involves restraint (including physical, mechanical or chemical) or seclusion.

Ombo Info is the newsletter from the office of the NSW Ombudsman.
Volume 4, issue 1 (April 2014) is now available online (or you can subscribe to receive it by email)

Starecase - a magazine for people with disability by people with disability.
Issue 5, April 2014 is now available online.

Getting a Life - Sally Richards in conversation

Sally Richards is well known in the disability community as an advocate and speaker, and spoke about Circles of Support, with families for Down Syndrome NSW, during the Up, Up and Away Project in 2007. This week, she spoke for nearly an hour on ABC Radio, about developments in hers and Jackson's lives since then.  Her conversation with Alex Sloan is available as an online audio file, MP3 to download, or as a podcast (48m 26s).

Sally Richards, Conversations, with Alex Sloan (ABC Radio Local), 17th March 2014

Sally's third child, Jackson, was born with ... a profound intellectual disability ... For 14 years Sally believed ... that Jackson would lead a very limited life and always need care. But Sally was perusaded more was possible for Jackson, and she devised a creative way to make it a reality.
Jackson now lives in his own home in an 'intentional community' and has a job which gives him independence and a visible role in the community.

One of Jackson's fellow residents is a young man with Down syndrome - you can read more about each of the residents and their homes on the Getting a Life website.

• Sally Richards spoke at TEDX Canberra in September, 2012 on 'Creating a meaningful life for Jackson'

Ethan Saylor's death - one year on

As the first anniversary of the death of Ethan Saylor in Maryland (USA), the local and wider response continues to unfold:

The legacy of Ethan Saylor
Jeremy Meyer, Denver Post, 11th January 2014
... The death of Ethan Saylor at the hands of sheriff's deputies who were trying to evict him from the theater he entered without a ticket has become a significant event for people in the disability community who push for equality and inclusion as a civil rights issue ... The incident should stand as a catalyst for change in a world already changing for people with disabilities ... A growing number of people with Down syndrome, autism, mental illness and other disabilities mean there will be more encounters in everyday life. First responders must learn to deal with someone who may not respond to crisis in a familiar way. Training is essential ...

The (US) National Down Syndrome Congress commented that Jeremy Meyer's editorial  is 'thoughtful and well written'.

After Ethan Saylor death, panel calls for better training on disabilitiesJessica Anderson, The Baltimore Sun, 9th January 2014
... "Current training of law enforcement personnel in Maryland on how best to interact with individuals with intellectual and developmental disabilities is not offered in every jurisdiction and what is provided is inconsistent and not comprehensive," the (Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities) wrote in a progress report released Thursday ... The group will create recommendations for policy and training law enforcement, and other first responders who regularly interact individuals with developmental disabilities ...

UN recommendations to Australia on disability rights obligations

UN: Australia failing to meet its obligations to people with disabilities 

David Marr, AM (ABC Radio), 7th October 2013
The United Nations has found Australia is failing to meet its obligations to people with disabilities. It's the first time the UN has assessed whether Australia is meeting its international requirements under the Convention on the Rights of Persons with Disabilities, to which Australia is a signatory. As a result the UN has made a number of recommendations to the Australian Government ...

... Therese Sands, the co-chief executive officer of People with Disability Australia, was among those on the delegation. She has welcomed the recommendations made by the UN committee.

It's evident that the voice of people with disability in Australia has been heard. I think we're just very pleased that the lived experience at that grass roots level was taken to a global level in the UN, that the UN listened and then they provided these comments back to the Australian Government to benefit the people with disability who are affected every day by these issues ...

• Transcript and audio file.

• Concluding observation of the UN Expert Committee

• People with Disability (Australia) on the UN Convention on the Rights of {Persons with Disbaility

Short survey on voting in the Federal election

More from People with Disability Australia:

Following last week’s Federal Election, we want to hear from people with disability across Australia about your experience of voting.

PWDA has put together this short survey so that YOU can tell us about your experience, positive or negative, of voting in the 2013 Federal Election.

The survey will be open for 2 weeks until midnight Sunday 29 September

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

Easy English Guides: enrolling to vote and voting at the election

The Australian Electoral Commisssion provides Easy English Guides for voter registration and voting procedures, online here.

Voters must be registered on the electoral roll by 8 pm on Monday 12th August to be eligible to vote in the Federal Election scheduled for 7th September 2013.

Good news on the NSW Guardianship Tribunal

From NSW Council for Intellectual Disability E-News, June 2013:

NSW CID has been strongly advocating for key features of the Guardianship Tribunal to be kept when it becomes part of the NSW Civil and Administrative Tribunal (NCAT) in 2014.

One issue we were very concerned about was whether existing requirements for the Tribunal to have three members when it hears cases would be kept. We wrote a letter to the Attorney General, Greg Smith SC, strongly arguing for the existing three-member requirement to be kept. 

This was a joint letter with Alzheimer's NSW, the Brain Injury Association NSW and the Mental Health Coordinating Council. 

(NSW CID was) very pleased to receive a letter from the Attorney General assuring us that the existing three-member requirements will stay in place in the Guardianship Division of NCAT. NSW CID applauds the Attorney General for this decision.