Weekend reading and listening: 30 April - 1 May 2016

Reprise of a classic ... an address delivered by Dennis McGuire, who is visiting Australia next month:

If people with Down syndrome ruled the world 

Dennis McGuire, (US) National Association for Down Syndrome, 2005
This paper was originally delivered as a plenary address at the conference in Chicago in July of 2005, co-sponsored by the National Down Syndrome Society and the National Association for Down Syndrome. It was well received by the audience, and we have received many requests for a written form of the presentation. In this paper I will try to maintain the spirit and humor of the original ...

Becoming a National Park Service Junior Ranger

Mark Leach, Down Syndrome Prenatal Testing, 8 April 2016
... Now, why am I sharing all of this on a blog devoted to prenatal testing and Down syndrome? ... I am sharing all of this because just maybe there is a mom, or a dad, or an obstetrician, or a politician who may wonder what a life with Down syndrome can be like. I am not holding Juliet up as a representative of all who have an extra 21st Chromosome. I’m simply sharing what a Spring Break trip was like for one girl who happens to have Down syndrome ...

Quality of Life

Paul Critchlow, Orange Juice Flavour Sky, 28 April 2016
How’s your life? Are you living on Quality Street or in Desperation Alley? Was it different last month? Last year? Ten years ago? Do you think it will be different in ten tears time? How exactly do we measure quality of life? Is it possible to measure the quality of life of someone else? ...

What I Learned When my Brother Joined the Workforce

Erin Coleman, Colorado Developmental Disbailities Council, 16 January 2016

... Since starting his first volunteer job at our local library, eight years ago, my brother has learned a lot about workplace etiquette; and I have had the privilege of learning something as well – the same unpredictability that translates to embarrassment for a sibling translates to an asset in the workplace.

Here are just a few of the things I have learned from working with my brother…

This episode of Conversations was rebroadcast today - in case you missed it, you can hear it as a podcast. People with Down syndrome and their families are mentioned several times, as they are in the book, Far from the Tree:

Conversations with Richard Fidler - Andrew Solomon 

ABC Radio, rebroadcast 29 April 2016 (original broadcast 2014)
Over the course of a decade Andrew talked with 300 parents raising exceptional, unusual or difficult children. Andrew talked to families of children who are different from their parents: children born deaf, or autistic, or transgender; and parents of child prodigies, and of criminals. 

Working on what would become his award-winning book, Far From the Tree, he reached the conclusion all of us have 'vertical identities' and 'horizontal identities'. He explains vertical identities are the bits we get from our parents: our religion, race and nationality. Horizontal identities, Andrew says, are characteristics that are ours alone, and are often the hardest parts for parents to accept ...

Choice and control: social care must not disable people with intellectual disabilitiesVal Williams,  British Politics and Policy blog (London School of Economics and Political Science), 8 March 2016

People with intellectual disabilities should not have to prove their abilities in independence skills before having the right to live the life they want, argues Val Williams. Policy should allow for a personalised focus on the identity of an individual, with personal assistants able to step back and facilitate choice. Inclusive research helps build up this attention to detail in a relationship and can highlight how shifts might occur from being mutually supportive to becoming defensive, judgemental or even abusive ...