Carly Findlay on inspiration and objectification.

Melbourne writer and activist, Carly Findlay has invited readers to share her recent post, written in response to a request for a resource for teachers and parents, from a parent. We are happy to oblige - it is thoughtful, substantial, well researched and illustrated, founded in Carly's personal experience, as well as others'. One of the references is to the Indiana campaign included in our weekend post.

The Down syndrome community is replete with references to inspiration and with objectification - we need to consider this phenomenon/behaviour seriously, take on board what people with disabilities have to say, and alert our schools and communities to it.

Sue asked me if I knew of any resources for parents and teachers that teaches young people about the impact of inspiration and objectification on people with disability. She and a friend wanted to see something written from the perspective of a disabled person, that was "informy, rather than blamey". She wanted it to be in palatable language for a broad audience ...  

... When I've previously mentioned inspiration as objectification of people with disability, using the term Stella Young coined, some people have felt uncomfortable. They don't like the term, so deny it exists or don't want to look into the issue further. This happened a lot during the #crippingthemighty discussions While I never want to censor myself, sometimes I realise the need to soften language to make serious issues more palatable, to reach an audience that needs to hear it. There is definitely a need for this post ...

Inspiration and objectification of people with disability

 - a resource for teachers and parents

Carly Findlay, 5 February 2017 

Commentary on the attack in Japan: disability perspective

How do people with disability feel about the very recent attack on people with disability in Japan, and the way it has been reported?  As distressing as it is to confront, people with Down syndrome are not exempt from such actions, we cannot assume they will not know about it, and need to process unwelcome information and the feelings it engenders. There will be more commentary (perhaps not much in the mainstream press) - here is Dave Hingsburger's immediate response:

Japan, Hate and 12 Days

Dave Hingsburger, Of Battered Aspect, 26 July 2016

... His statement to the police upon turning himself in that 'it's better that disabled people disappear' isn't a deranged rant by someone out of control, it's a calm statement of fact that echoes the sentiment of many in society. People with disabilities know this sentiment, we hear it, we experience it and we have come to fear what it will do. Our lives are devalued, are needs seen as special and therefore burdensome, our rights are declared to be gifts rather than guarantees ...

• The Guardian's article referred to in the blog post: Japan care home attack: picture emerges of modest man with horrifying vision

And from disability journalist and blogger, David Perry (who is also the father of a young son with Down syndrome):

Violence, Disability, and the Lessons of Sagamihara

David Perry, Pacific Standard, 27 July 2016
The ableist attack on a residential center for people with disabilities highlights the violence that disabled people face around the world — and how far we have to go ...

Carly Findlay, activist

Carly Findlay is a Melbourne writer, speaker and appearance activist with a growing profile in the broader disability activism field, for her her clear thinking and writing, from the perspective of a person with a disability. Several of her blog posts have been adapted in the mainstream press, and they resonate widely.

She is the latest addition to our list of 'Blogs we read' (scroll down the right hand column), and well worth  following on Facebook too.

This weekend, The Age (Melbourne) published an article quoting her criticism of a particular theme of Facebook posts exploiting people with disabilities, and she has expanded it into a blog post published today. We might not all use Facebook, but it can generate attitudes and actions that have an impact in real life - it's not a big stretch to see how people with intellectual disability can be affected:

Stop praying for and exploiting disabled children and adults on Facebook
Carly Findlay, 11th January 2016
... People are stealing photos and using them on Facebook pages and groups. Hell, I saw one 'prayer group', dedicated to sharing these photos, encouraging mindless scrolling and typing amen. What does this achieve?

These posts don't state or explain a diagnosis or aspects of disabilities (not that strangers need to know), humanise the person featured, nor, as Craig Wallace and Jax Brown told The Age, draw attention to any real issues people with disabilities face (like access and employment) ...

Disability advocates demand an end to 'slacktivism' and 'inspiration porn'
Jill Stark, The Age, 10 January 2016
Carly Findlay doesn't want your prayers on Facebook. She has only one ask: think before you click. The Melbourne-based writer and appearance activist is among a growing number of people with disabilities demanding an end to online "slacktivism" that reduces their lives to a world of pity and low expectation ...

Carly posted on Facebook just a couple of weeks ago:
If you're a parent of a child whose photo has been misused in a viral Facebook post, you can fill out this form and submit to Facebook. DeDe from My Warriors Conquering the World did this when Evan's photo was stolen and ridiculed, which resulted in removal of the photo.

Who should protect children with disabilities? Everyone.

NSW Council for Intellectual Disability is the very active peak NSW body for people with intellectual disability. The blog they started about a year ago, addresses important current matters concisely and directly direct. The latest, a guest post by Sally Robinson was published yesterday:

Protecting children is everyone's business!
Guest post by Sally Robinson, NSW Council for Intellectual Disability (blog), 13th October 2015

"Protecting children is everyone's business" - It is especially worth thinking about how much really goes into making the protection of children and young people with intellectual disability everyone's business. 

Sadly, research and experience show that in the lives of too many children and young people with disability, there is a reluctance on the part of many people to make it their business to help keep children safe, or to step in to prevent or stop harm from occurring. 

The horrifying statistic that children with disability are over three times more likely to experience abuse than their peers without disability should give us all pause ...

New blog: 'The life that Max built'

Alex McAuley's blog The Life That Max Built is a new and very welcome addition to the scene - beautifully written, candid, funny ... she aims to reassure newer families that life will be good, without shirking the bits that will hard, and strikes just the right note. Max is 22, and one of four boys, so Alex and Max have a lot of well-considered experience to share.

(In addition to regular blog posts, the as-yet undeveloped pages 'Dancing to the Max' and 'Pottery to the Max' hold promise of other delights. If you can't wait, you can read a little more about Max here.)

Just three posts in, this one is going on the 'Blogs we read' list (scroll down the column on the right of this page) and into the blog reader so that no post is missed. It deserves to be shared around.

Resources: social media, books, video and more

RLI Closed group
A closed Facebook group for families and educators using or interested in using Down Syndrome Education International's Reading and Language Intervention for Children with Down Syndrome (RLI).

RLI is an evidence-based program designed to teach reading and language skills to children with Down syndrome. It incorporates best practice in structured activities delivered in fast-paced daily teaching sessions. It was evaluated in a randomized controlled trial and found to improve rates of progress compared to ordinary teaching.

Disabi(LIT)y - disability in literature
A blog about books focussing on or featuring people with disability - fiction and non-fiction, including reviews and recommendations, written by the mother of a boy with Down syndrome. If you are a reader, this one's for you. A link has been added to our list of 'blogs we read' in the right hand column of this page.

Too Many Elephants In This House - Auslan
Children's book in Auslan and text on video



New book for health professionals
Down syndrome: Current Perspectives

Richard W. Newton, Liz Marder, Shiela C. Puri, April 2015

Down syndrome; Clinical Perspectives provides doctors and other health professionals (Publisher's note)
with the information they need to address the challenges that can present in the management of syndrome. Chapters written by internationally respected paediatricians with a special interest in Down syndrome, cover Down syndrome comorbidities, such hearing problems, gastrointestinal disorders, congenital heart diseases, as well as the underlying biology and new developments in molecular genetics. Contributions from the UK Down Syndrome Association and Down Syndrome Medical Interest Group define how doctors can work effectively with other professionals to improve health care provisions for this group. Each chapter is illustrated by informative case scenarios and answers to FAQs from parents and carers.

New in the DS NSW library

Frans Families, by Lorraine Maclarty
A beautiful large format book, featuring photos and stories about twelve people with disability associated with FRANS, a Disability Support Organisation located in Sydney's inner west. The book features a number of young people who are also members of DS NSW. Thanks to Margot Elliffe for donating the resource to our library.

Email: library@dsansw.org.au


Safe at Schools - exploring safety and harm of students with cognitive disability

Dr Sally Robinson, Lel D'Aegher, Anne Graham, Dominique McGovern, Southern Cross University, 2015

Students with cognitive disability experience higher rates of abuse, neglect and exploitation than students without disability. This research project investigated what students, their families and other key supporters such as teachers, disability, and child protection workers think about personal safety in and around school, together with their perspectives on what might make things better. The research was supplemented by an extensive analysis of relevant law and policy in this area. 

The project resulted in a research report; and resources for students, families and professionals working with students who have cognitive disability.

Picture My Future

Picture my Future, also known as Image-supported Goal Exploration, is a visual support resource to assist people in the planning process, produced by researchers at Deakin University.

There are five modules:

1. Introduction to Picture My Future
2. Communicating with a person with disability
3. Where does Picture My Future fit in the planning process?
4. Picture My Future - a guide
5. Using pictures to explore hopes and dreams

Someone is No One. Someday is Never 
Crystal Lynn,  Service, Support and Success, Volume 4, Issue 5, May 2015
A person receiving services (the term ‘member’ will be used hereafter) approaches a staff supporting him in his home and says, “I want to go to the movies.” Staff looks up from a pile of paperwork and responds, “Yeah, that sounds nice. Someone can take you soon.” ... These are common dialogues between members and staff. On the surface it seems harmless, but it can actually be quite damaging. In the field of service provision to people with disabilities, we’ve talked about the importance of supporting individuals to make choices. We’ve talked about the hazards of saying ‘no.’ What we need to talk about now is the tendency to – and the danger of – non-committal responses ...

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

Pro-choice and anti-eugenic: some recent discourse

The concept of 'pro-choice and anti-eugenic' is attracting increasing attention in the ever more complex ethical debate arising from advances in prenatal testing, as are considerations about the quality of information prospective parents are offered, and the language we use in relation to pre-birth testing and diagnosis:

Changing the conversation on abortion and Down syndrome

For Elysium, 6th April 2015

 ... So how about this? Remove abortion from the conversation. Just like when a woman gets pregnant and nobody goes around telling her she has “options” because guess what? She knows that. And if she has a positive screen for Down syndrome, she still knows that. Nobody needs to spell it out for her.

But by including talk of abortion with a Down syndrome diagnosis, medical professionals are forcing parents into a corner. They are forcing parents to make a decision they might not even have considered. They are planting ideas of a horrible, suffering, painful existence that could be prevented with one life-changing decision ...

Seeking a pro-choice and anti-eugenic rhetoric

David Perry, How Did We Get Into This Mess, 28th October 2015
... I believe, without equivocation, that access to abortion should be universal, affordable, protected by law, and solely the choice of the woman. But I also believe that in making such choices we reveal all kinds of underlying principles about what is valued, what is good, and what is normal. In general, disability is perceived as none of these things. I am trying, and mostly flailing about, to develop a pro-choice and anti-eugenic rhetoric ...

How the Pro-Choice Movement Excludes People With Disabilities

Lenzi Sheible, RH Reality Check, 17th October, 2014

... Rather than reasoning that all abortions should be equally accessible no matter what, many pro-choice advocates lean on the argument that of course people, including anti-choicers, would opt out of having a disabled child if they had the means ...

Refreshed

You might have noticed that the blog has new banner photos, a new background and that the text colours have been tweaked a little.  We hope you enjoy the new look.

The update has included a revision of the lists of links to other blogs and websites you will find by scrolling down the right hand column. The online presence of individuals and organisations  is constantly changing, so some of the previous listings remain, others no longer post, and have been removed. These are our recent additions - check them out, there is some very interesting and useful material there.

Use our links, or add them to your reader app. Happy surfing!

Links added to 'Blogs we read'

Links added to 'Websites we consult'

Good health: important advice for summer

The Adult Down Syndrome Clinic has recently posted some advice particularly relevant for people with Down syndrome as we in the southern hemisphere come into summer:

Image: Pixabay.com

• Eye conditions and sunglasses ... Eye conditions are more common in people with Down syndrome ... Sunglasses may help prevent cataracts and glaucoma
• Hydration  ... Based on patient interviews, physical exams and review of lab tests, it is clear many of our patients don't drink enough fluids ...

Timely advice for those signing up for Step UP! for Down Syndrome 2014

In celebration of World Down Syndrome Day (3) ...

As the writers suggest, this blog post from the Adult Down Syndrome Clinic provides information about people with Down syndrome appropriate for upper primary/young high school students, in response to a series of question posed by a (US) middle school student.

And you could back it up with the video Just like you - Down syndrome, available freely online and/or for purchase here.

Resources: a new book, and more on key word sign

Stand up for those with Down syndrome
Regina Brett, Cleveland.com, 22nd February 2014
Like any new dad, Rob Snow couldn't wait to show off his beautiful, new, baby boy. But when people realized Henry had Down syndrome, their faces fell and they said the words Rob would come to dread: "I'm so sorry."

The look of sadness and sympathy on their faces made him want to scream. Instead, he wrote a book called, What I Should Have Said ...

• Rob Snow's website, Stand Up for Downs
• Stand Up for Downs on Facebook

What does it matter what signs I use?

In her latest blog post in her series about apps for key word and Auslan signing, Aileen Ryan gives very useful background information on choosing a sign system that best suits your purpose. This post will lead into the next one, in which Aileen will review the app Baby Sign and Learn. Scroll back through recent posts for others in this series, beginning in January.

Australian apps related to Auslan and Key Word sign

Image: Pixabay.com

Aileen Ryan is publishing a very useful series of blog posts at Key Word Signing and Proloquo2Go on sign language  (Auslan and Key Word Sign) Australian apps available on iTunes for iPod, iPad

and iPhone. The first in the series was posted on 27th January, the second on 31st January, with more to come.

AIleen's experience in using and teaching Key Word Sign with people with developmental disabilities and their families, and her interest in technology has led to her developing particular expertise that is invaluable to families.

Elsewhere on her blog, Aileen deals with matters related to how her daughter, Elysha (a young woman who has Down syndrome and hearing impairment) uses Proloquo2go, and Auslan to communicate.  Through her business, Hands Can Talk, Aileen teaches Key Word Sign and the use of Proloquo2Go.

• Hands Can Talk on Facebook

Exercise and overheating: warning signs in people with Down syndrome

Timely advice with the arrival of what is shaping up to be a long hot summer:

Warning Signs a Person with Down syndrome is Getting Overheated

Brian Chicoine, MD, Advocate Medical Group Adult Down Syndrome Center, 21st October 2013
Exercise is important for people with Down syndrome just as it is for all people. For all people, care must be taken to avoid overdoing it with exercise. Excessive sweating can be a sign to ease back, get a good drink of water, and cool down.

However, some people with Down syndrome don’t sweat much and can get overheated more easily. It is important to watch for signs of overdoing exercise or overheating ... read the whole article here.

Timeless wisdom, bears frequent repetition ...

Behavioral change as communication

Brian Chicoine, Adult Down Syndrome Clinic, 6th October 2013

... When I teach medical students and residents, I always tell them that if they are going to sleep through the rest of my presentation, this is the one slide they should review.

“There is an interaction between physical and mental health”.  

“Any and all behavior change should be viewed as a possible communication tool”.

When there is a behavioral change, it is imperative to look at possible contributing factors. Could there be a physical health problem? A social issue? A psychological stress? A problem in any and all of these areas can contribute to behavioral change ...

... read the whole post here, remember and share it around.

• And today's post, Health promotion and assessing health also has universal relevance

'We live in remarkable times' ...

EGE - DEN....DEN - CVG

Margaret (Gary) Bender, The Ordinary Life of an Extraordinary Girl, 18th August 2013
Just like thousands of families across the country I have been getting my daughter ready to go to college. And yesterday, just like thousands of Moms across the country I put my daughter Alex on a plane to go to college ... We live in remarkable times.

Alex  is the 'extraordinary girl' about whom her mother, Margaret (known as Gary) has written the blog The Ordinary Life of an Extraordinary Girl, for several years, and the book From Grief to Celebration. This week, 20 year old Alex is starting college interstate - the beginning a whole new life. Gary has chronicled the decision making, the planning and the process of getting ready for this major transition - and Alex has been reminding her about all the changes she about to experience, including how she is not planning on ever living at home again.

The story includes reference to the less than 'six degrees of separation' that might describe the connectedness of families in which there is a person with Down syndrome, as Alex and Gary meet up with another  blogger, Susan and her daughter, April (April's Anecdotes). They first tell the Benders about the college program Alex is now entering at University of Cincinnati, and have become firm friends.

It is worthwhile reading back through Gary's posts over recent months if you are not a regular reader of the blog, to appreciate the story so far.

The Ordinary Life of an Extraordinary Girl is also a Facebook page that might interest you.

Both blogs are listed in our blogroll (see the right hand column of this page) for easy reference.

In the news: Justice for Jenny

Big ideas, well stated, in Dave Hingsburger's commentary on a guardianship case in the US this week that determined that a woman with Down syndrome was quite capable of choosing where she lived, and with whom. A link to a post by the American Civil Liberties Union follows:

Jenny and Eve and the Statistics of Freedom

Dave Hingsburger, Rolling Around in My Head, 13th August 2013
... Jenny and her single, strong, voice made it clear that she would be heard. And she was. She won her freedom, she won her choice.

And we already know that freedom is statistically better than captivity.

But think about this: Why is this battle being fought over and over and over again? What is it about the freedom of people with disabilities that is so frightening that battle after battle after battle has to be fought? Why does the idea that people with disabilities are citizens with rights upset us all so very much? ... read Dave Hingsburger's whole post here.

Disability Is No Excuse to Deprive One of Civil LibertiesSusan Mizner, American Civil Liberties Union, 5th August 2013
... Jenny spoke for many other people with disabilities when she said clearly in her trial: "I don't need guardianship. I don't want it."

On Friday a judge in Virginia denied guardianship to the parents of Jenny Hatch. Hatch will instead be able to live with her friends, couple Kelly Morris and Jim Talbert, as she had requested. This is a victory, but it should never have come to this ... read the full ACLU post here

Woman with Down syndrome prevails over parents in guardianship case

Theresa Vargas, Washington Post, 2ndAugust , 2013
In a victory for the rights of adults with disabilities, a judge declared Friday that a 29-year-old woman with Down syndrome can live the life she wants, rejecting a guardianship request from her parents that would have allowed them to keep her in a group home against her will.

The ruling thrilled Jenny Hatch and her supporters, who included some of the country’s most prominent disability advocates.

“Oh my God,” Hatch said over and over again, shedding tears. “I’m so happy to go home today. I deserve it. It’s over. My God, it’s over.” ... read the full Washington Post report here

Prof Sue Buckley's new blog

Director of Research at Down Syndrome Education International, Prof Sue Buckley has set up a new blog:

I have started this blog to share what I am learning as I engage with so many interesting, informative and dedicated people – parents, researchers, and practitioners (particularly educators, speech and language therapists and early interventionists) as I am privileged to travel and work widely within the Down syndrome community.

Her blog post from 16th June 2013 describes recent teacher training she has been providing in Texas:

Parent power is changing education – keep it up!
... A defining feature of this work in Texas is parents and professionals working openly together. Parents start the process – ask for more for their children and some excellent professionals hear them and help them to make it happen.

Apraxia series on Talk-Down Syndrome

Speech and language pathologist Jennifer Bekins's excellent blog Talk-Down Syndrome focuses specifically on speech, language and communication in people with Down syndrome. Today she has published the first in a series of posts on apraxia of speech and children with Down syndrome:

... (a) series to explain what apraxia is (and isn’t) my hope is two-fold:

• My readers will understand apraxia and how it presents in children with Down syndrome
• Any negative emotions related to the term are relived and replaced with new perspective

... read on at Talk-Down Syndrome

Low muscle tone and infant feeding - questions and answers

Jennifer Bekins follows up her recent Talk - Down syndrome post Pre-feeding Exercises for Children with DS: A must? with an excellent discussion on low muscle tone and infant feeding: 

Does low-tone mean my infant will have feeding problems?

Since my post on pre-feeding exercises I’ve had some really good questions.

• What do you do for tongue thrust?
• What about drooling?
• How do you address low-tone and feeding? Exercises?

I want to take time and answer all of these, but today I will focus on low-tone, feeding, and children with DS ... read on here, at Talk - Down syndrome


Edited 15/3/2013 to add:
Today Jennifer has reprised and updated an older post on bottle feeding babies with Down syndrome - an excellent companion piece to the post on low tone and infant feeding -  Bottle feeding a baby with Down syndrome.

DSRF blog added to our 'must reads'

We've just added the Down Syndrome Research Foundation's blog to the list of those we read regularly (scroll down the right hand column of this page). The Foundation is located in Vancouver.

DSRF blog posts are not all about research (in fact most of them aren't) - they cover a range of topics of interest to families everywhere, who have a member with Down syndrome of any age.  We have occasionally posted links in our regular Weekend reading  posts, and the quality of the posts like these two recent ones will show you why we think a permanent link is a good idea:

• Martial Hearts
• From one parent to another: we need to get a life 

Enjoy reading the DSRF blog often, and/or follow them on Facebook.