The following is a cross-post from Philip Patston.
Philip is a social entrepreneur, diversity specialist, and managing director of Diversity New Zealand. He blogs about his life, work and existential crises as well as sociopolitical issues.
Autonomy is often used to mean independence. Though their dictionary definitions are similar and they are synonyms of each other, I like to talk about autonomy in a slighty different way.
For me, autonomy is having the choice over when I am independent and when I am dependent. It’s similar to the notion of interdependence, except the latter, interdependence, suggests an ongoing process of co-operation or collaboration. Perhaps autonomy could include the choice of interdependence as well, but for now I want to focus on the aspect of choice.
Many disability services have, at their core, a desired outcome of independence. Functioning on one’s own, without the help of others, is considered success. Dependence on others, by comparison, is seen as undesirable, costly and, hence, unsuccessful in the wonderful world of disability service provision. In the even more amazing worlds of case management and needs assessment however, dependence could be synonymous with abject failure — or worse: disaster!
This obsession to make disabled people independent has always seemed absurd to me. No one is completely independent, after all — we depend on builders for houses; lawyers and police for protection (sometimes one from the other); artists to adorn our walls — and so the list goes on. And while cleaning the house is a relatively simple chore, many choose — and still others actually need — to pay others to do it for them.
So if someone, on account of their unique function, can’t — or at least finds it difficult to — get dressed in the morning, why is so much emphasis placed on finding ways for them to do it themselves, independently, no matter the time or effort spent?
When I began to live “independently” at around 20 years of age, I did so with no support, apart from a flatmate who was as — or more — often out than at home. I’d start my day spending an hour abluting and getting dressed, including donning the most horrendously style-destroying footwear — grey sneakers with velcro straps — because I couldn’t tie laces. Then I’d have breakfast, only to have to begin the tortuous task of washing dishes, usually from the day — or more — before.
By about 11am I’d stop for a cigarette, all the while relishing the anticipation of cleaning the house — be it vaccuuming, dusting, cleaning the floors or, god forbid, the frigging toilet. By the time 1 or 2pm came around, I was physically knackered, often in pain and more or less good for nothing for the rest of the day.
But I was being independent.
I can’t remember how long it was that it took me to unbrainwash myself — longer than it should have, given I tend towards masochism as one of my learning edges. But I finally managed to process the cognitive dissonance slowly creeping into my consciousness: if “independence” meant doing nothing more than menial chores in unfashionable shoes, well, I didn’t want to be independent.
So I threw myself into the wonderful world of needs assessment and disability support services (WWNADSS), learning very quickly the two cardinal rules of getting one’s needs met: 1. never say you can do something but it’s difficult; and 2. never say you can do something but it’s difficult. Because something being difficult meant there could be an assistive device, designed to make things easier (ergo increasing independence), but actually badly designed, as unfashionable as velcroed shoes and more than likely useless and more time consuming.
Thus I learnt the valuable lesson of black and white ability — not the competence to change ethnicity but rather that, in the WWNADSS, there were only two answers: 1. I can; and 2. I can’t. Later I learnt a third answer, the dismal future speculation: if I keep doing this one thing now, it’s highly likely to fuck me up so badly that, in 5-10 years’ time, I’ll be unable to do 3 things. Ergo more, perhaps unnecessary dependence now will equate to less independence henceforth. Net result, more independence. Success! Great rule that, folks, learn it.
I exaggerate in jest — this was the 1980s and things are slightly less black and white these days (though its legacy lingers). I write this off the back of a lecture I did with case management students at AUT University yesterday. My point was that they reframe their role, from being the champion of independence, to being a facilitator of supported autonomy. In other words, guiding people to choose where and when in their lives they want to be independent and where and when they want to be dependent. It may seem an obvious change in understanding, but the old independence imperative is still surprisingly prominent in the WWNADSS as well as case management.
Who knows, had I not realised the impact of its potentially paralysing grip on my life, independence could have stopped me writing this post as I look back on a successful 22 years’ professional career. I could still be washing the dishes.
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