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Reflecting on the vastly different meanings the word “support” has for people with disabilities

Leslee Hogan is a Parent/Social Worker/Advocate.
Please read this piece she has written and we encourage your opinion and thoughts. 

“Reflecting on the vastly different meanings the word “support” has for people with disabilities. It’s not just the word, its the vastly different realities people with disabilities inhabit. And the vastly different jobs support workers do. It’s truly wonderful to hear the stories of people with disabilities finding meaningful employment. It’s fantastic to see photos of people with disabilities having adventures, pursuing their interests, developing their life skills, explo…ring their creativity, expanding their social world, gaining/regaining independence.

I recently had the pleasure of meeting Lisa Ashford-Potter who asked about the kind of support workers my son needs. My response was “the first thing is, they need to be able to keep Sam alive”. I went on to explain that anyone who supports my son must have the capacity to learn some basic medical knowledge and procedures in order to keep my son safe and well…because NONE of his community participation or other goals can be pursued unless he is well enough to pursue them, and support worker errors can result in many months in bed, or worst case scenario – his death. Through experience I have found that not all support workers have the capacity to learn the more nursing/medical side of my son’s support, even experienced workers…even with the best of training (believe me I spend a lot of our budget on training!!!!!). Yesterday I watched a video produced by a disability service with a sound reputation. The video profiled people with disabilities enjoying themselves with their support workers, swimming, acting, learning life skills.

While the organisation provides services to people with all kinds of disabilities, only those who were mobile, physically active and who had no unusual physical features, or obvious disability, were featured in the add. It really got me thinking. I wondered if even our tax payer funded disability services wanted to make those people with higher support needs invisible? It was an ad to attract support workers and they made it all look like so much fun … which is great, but it’s only half the story. The support worker role for people with higher needs was not represented at all. It left a certain group of service users, who also need support, hidden from view. There wasn’t a wheelchair, a communication device, or a van hoist in sight. As the parent of a young adult with very high support needs, I feel that the discourse around disability is strongly aimed at those who are more able to enjoy the good things life has to offer. I would not deny a single one of those people the opportunity to make the most of their lives according to their interests and passions. I WOULD like to hear, on occasion, those with higher needs, whose lives are vastly different, by necessity NOT by choice, included in the discussion. At the moment, I feel they are invisible…even to defenders of the cause. Is this a reflection on how they are valued?”

Leslee is keen to connect with people who are concerned about this issue and can be contacted via email  [email protected]