A colleague reflected the discomfort telling us of the father of a 15-year-okd who had described his son a like a two-year-old… such a provocative comment… so many feelings and thoughts.
Using analogies to infants and children in the intellectual disability world… seems so often to go hand in hand with a tacit response, unspoken but shared.
But not all responses are the same. Not all intentions in uttering the words are the same. Not all interpretations of meaning are the same.
Hoping we can have a conversation to explore the use of age analogies, not to come to the “right” answer, but to understand different perspectives and the thinking (surface and deep) underlying the feelings.
I know I often stand as an outlier in using analogies of age. I know I need to unpack why I do this, and whether I should continue to do so. Can I encourage you to share your thoughts here on this often contentious topic… I will share some of my thoughts as a comment, as to keep the starter post neutral.
I few of the PIMDA articles were recently reproduced in PMLD-LINK magazine. http://www.pmldlink.org.uk
This is a great UK magazine that focuses on people with profound intellectual and multiple disabilities. It contains articles, resources, training… Always thought provoking.
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?
I’ve been noticing lately how many people seem a little apologetic when they tell me or show me what they do when they are interacting with people with PIMD. I hear things like “we just muck around”, “just have cuddles and stuff”, “we don’t do much”, “I probably baby her a bit”, “you’ll think I’m a bit of a loon”. But the person knows that those are the things that work in interactions: playfulness, fun, repetition, quiet being together, tickles. Why is that people are apologetic about doing these things, when they are the things that contribute to a person’s quality of life? Why can’t people stand up and be proud (in the home, day service, and out and about) and say this is what being with this person in a meaningful way is all about?
So many great quality interactions happen in bathrooms and bedrooms behind closed doors (often people are more vocal, move more, and are most alert) where people won’t be embarrassed by their playful interactions – can we get playfulness out of the closet?!?