A perspective on the world of disability from a mother and an educator. Follow my blog!

Wednesday, 25 September 2013

Independence


Since becoming a parent seven and a half years ago, I would often look at my childless brother and be slightly jealous of his carefree lifestyle: the weekend sleep ins till midday, going out to the movies regularly, walking into family functions with nothing but his keys in his hand, being able to watch a tv show of his choosing. I would sigh for that lost lifestyle, the freedom, the independence, then look at my girls and remember all that I had gained, not lost.

The idea of independence though is one that has been mentioned to me again and again recently. I think it is a concept not fully understood by those not marginalised by a disability and is more often than not taken for granted. A number of teachers I have been speaking to have expressed (I won’t say complained of) their frustration at the amount of one-on-one time students with a disability require, particularly those with an intellectual impairment.

My first reaction is incredulity. “This is my life!’ I shout at them in my head. As a parent of someone with an intellectual impairment I live this ‘one-on-one’ support 24-7. I don’t get to go home at the end of the working day, back to my independent life. I live a life where someone is completely dependent on me and will likely remain that way is some form or another. There’s no respite, no escape, no end point, no knock off time where parents or carers can just end their working day and down tools. I get disheartened when those who have chosen to help and guide children put some of them in the too-hard basket because their ability to be independent is limited.

I wonder if these teachers stop to consider what that ‘one-on-one’ support means when the child goes home. For many parents and carers in becomes like a split personality. You no longer keep track of the needs of just one person, but two. I don’t mean in the simple way a parent looks out for a child or considers their well-being. I mean an intensely intimate knowledge of another person’s needs, long-term, short-term, immediate. Toilet training is hard for almost every parent, but imagine having to be that intensely aware of another human being’s bodily functions and needs, always.

What they eat, how much they eat, is their body functioning well, have they had their medication, how is their coordination and muscle strength, is their mobility hindered in any way, are they tried mentally, are they tired physically? So many questions to be constantly asking about another human being. Imagine having to think about the physiological needs of two people (yourself and another), but now add in the fact that you have to stop and think about their thinking patterns, trying to understand how they are experiencing a situation in order to help them negotiate it. On top of this, add in that you need to think about their safety, their happiness, their treatment by society. As I travel during these school holidays I can promise you I don’t get to finish that one-on-one support at 3pm every day.

Just yesterday I watched a documentary on how adults with various disabilities negotiate having a sex life. In some instances parents needed to be responsible for the sexual well-being of their children. That takes looking after another’s physiological needs to a whole new level. You can understand why I get frustrated at the teacher who gets bothered by the intense level of support needed in a classroom for the duration of a double lesson.

As educators we need to be doing what we can to help every student achieve independence. We want them all to be productive members of society. Eventually the students with disabilities we teach will be the people helping us at Target, or serving us our coffee, or working in admin with us… or thanks to the lack of effort put in by their educators they could be on welfare limited in their ability to be independent because they were not supported to. I came across the interesting fact a few years ago that every $1 spent in the early intervention of a child with a disability saves $6  for the rest of their life. Imagine if we translated that to time. Maybe every minute spent in patience now could save us six minutes down the track. We could just sit back and moan about how students with disabilities are a drain on our time in the classroom, or we can do something to give them the independence they so rightly deserve.

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