Monday, October 31, 2011

Culture or absolute?

One of the things that struck me while visiting Biwako Gakuen was the amazing bathroom that I went into. There was submersible bath, a plinth that got pushed into a cavern to which a spray shower could be used, and a plinth for washing all in a large room. I heard the statements in my head that may be made by people in Australia "oh terrible, what about privacy". But in Japan concepts of privacy are very different. Communal bathing is not uncommon in the steaming hot Japanese bath.
It took me back to my visit to an institution in the Netherlands where shared bedrooms were used. I was challenged with the perspective of in whose best interest was it to be in a "private" bedroom particularly when you had a physical disability, vision impairment, and intellectual disability. I've been struck by this thought - what is the difference between a seclusion room and a private bedroom.
Traveling to different cultures is enormously challenging. What are the absolutes in life quality? What are our culturally imposed norms? What is in the best interest of the person with PIMD - what matters to them?

Japan trip - some brilliant things happening

So a couple of weeks ago I had the pleasure of attending the Asia-Pacific IASSID PIMD roundtable. There were presenters from Japan, Malaysia, Vietnam, Taiwan, and me. There were also many poster presentations. On the second day there was a service visit - more about that in a moment.
The trip was fascinating. I would love to spend more time translating the Japanese practice to the English speaking world. Japan has a large and long run association focusing on what they called SMID: Severe and Multiple Intellectual Disability. This includes families, doctors, allied health. It is very active. Within that is people with PIMD.
Additionally they have a large number of people considered to be Medical Care Dependent Group (MCDG). These are people who largely have tracheotomy, ventilation, IV sustenance, and other medical complications in addition to severe ID. It was fascinating finding out more about this group. I met some of these adults. They are a growing number in Japan. I need to find out more about their presence in Australia. Issues for them cut to the core of whose lives are seen as viable.
I had the pleasure of visiting Biwako Gakuen (this site is in Japanese, but you can get a general idea by running through it in a translator like Google Translate). I saw some excellent support here with the most profoundly disabled people that I have met. I observed and interacted with people in small (no more than 8). There always seemed t be present engaged staff and volunteers attending to people on an emotional level.
One of the developers of the institution was Kazuo Itoga. A brief biography of him can be found at He said "We are not seeking pity in bringing the light of the world to these children, rather polishing them since the shine brightly by themselves."
I'll write down further thoughts about the visit in the coming weeks...

Thursday, October 6, 2011

Off to Japan

Next week Curtis and I are off to Japan for The first Asia-Pacific regional roundtable on Profound Intellectual and Multiple Disabilities (PIMD). I'll be speaking about what's happening in Australia (as far as I know). There will be presentations from Vietnam, Japan, and other places. I'm really excited to see what's going on locally!
Full report forthcoming.
20th-21st, October, 2011
Chair person: Prof. Tadashi Matsubasa
Professor and Chair of the Division of Severe Motor and Intellectual Disabilities, Kumamoto University Hospital
Sponsored by Japanese Society for Severe Motor and Intellectual Disabilities

Involve Me

Great new resource from Mencap in UK. A beautiful multimedia package. Check out the website at
The Involve Me resource aims to increase the involvement of people with profound and multiple learning disabilities (PMLD) in decision making and consultation. The resource is the result of a three year project, supported by the Renton Foundation and run by Mencap in partnership with the British Institute of Learning Disabilities (BILD).

People with PMLD and staff took part by learning about and using different approaches to communication: sharing stories, creative communication, peer advocacy and multimedia advocacy.
I also requested the DVD and got my hot little hands on it yesterday. If you do get hold of it check out the Robbie video. It's a great video of a man who enjoys throwing a spoon and this is valued by staff rather than seen as a problematic behaviour - I love it. One day when I get time I'd love to do something on the valuing of idiosyncratic skills!