Dear Mr Campbell,
I am a writer of a music blog which a number of my close and far family and friends read faithfully, and I often leave dormant for a time while I’m busy with life and everything that goes with it. I also am lucky enough to be employed by the government (one of your public servants you may wish to sack later), working for disability services. I’ve had the pleasure of working with people with disabilities for over 3 years, and even before that when I was a part time therapist working with a child with autism.
My experience with people with disabilities is a mere bit of dust on the tapestry of other’s. But even I can see the necessity of bringing these experiences into focus.
Firstly, the juxtaposition of my own life, compared to the lives of others, is ridiculous.
I basically am at a place and ability to do whatever the heck I want. I have a fulfilling job, relevant to my interests, that gives me security and finance to support my desired, chosen lifestyle. I live where I’ve chosen to live, with people I have chosen to live with, at a location I desire. I’m close to the things I like to do at this location… shop, buy what I want without having to consult with anyone else, attend music events, movies, performances, galleries, restaurants and bars, and gyms (all of my choice). I can drink as much as I like, and indulge in other good-in-moderation things, without having to answer to anyone, I can visit my friends when I like, and I can choose who my friends are. I see my family often, and they have been in my life, all of my life. I am in a relationship, with everything a relationship allows, and if I wasn’t in this relationship, I could still provide for myself a healthy sex life if I wanted to (whether by myself or another person). I am a visible consumer, I can vote, and I can choose what I do with my spare time, I can choose what music I listen to, and try to make a valued contribution to society by writing about music online. You could say I have a valued, social role, in most aspects of my life, my career, family, personal life, friends, and recreational time.
A lot of people in this world can probably read that paragraph and think that it describes them. In fact, for some people, this kind of life is a given, something expected, taken for granted, the basics.
For a lot of other people, this paragraph is pure fantasy, a dream that they might laugh off as ridiculous.
The adults I’ve met with (intellectual and physical) disabilities… some acquired, some born, most, if not all, exacerbated by their neglected, sometimes brutal past; have never, and perhaps will never, be able to say these things about themselves. They’re stuck, and literally stuck, in a system that is incompatible with what it claims to provide.
You’re probably on your way to your twilight years, I’m guessing Campbell? I assume you have a pretty neat little idea of what you’d like to do in those years, don’t you? Probably deciding to retire when you like, buying a caravan or houseboat or plane ticket, and scooting around to all the places you’ve always wanted to go to, selling off the family home to buy a lovely little queenslander in the country? Something like that? Ok, well imagine instead, that in your twilight age you lived in a tiny box-like, urine-smelling government built house, where you shared your entire life with 3 or 4 other people around the same age, who you have not chosen to live with, and a handful of rotating carers that helped you with those little tasks you can’t do completely by yourself. Imagine that your time outside the house, doing what interests you, was scheduled rigidly, to occur for a total of 6 hours every fortnight. That means, in a week, 3 hours are allocated for you to simply get out of the house. 165 hours remain in which you are firmly stuck inside those walls. Imagine if, during those 3 hours, you were accompanied to programs or activities that were chosen for you, based on what’s available, and what people think you might like. (You've never had a job, so you have little money to spend on anything different anyway). Some of them are courses like cooking or music, which you’ve been involved in from start to finish, multiple times. You’re sick of them, and you’d like to tell your carers, but they don’t have the time to sit down with you and let you explain to them, in your way of communicating, and in a way they can understand. In fact, you can’t tell them that the potato mash you get served up every night for dinner, is your least favourite food ever. Then, on the odd occasion that you get so fed up you throw the plate at the wall with all your strength, you get put in isolation, a bunch of people go on talking about how aggressive you’ve become, or worse, you’re given some valium to ‘calm you down’ / put you to sleep. The little privacy you have in your room is always broken by carers checking on you. You’d like to have a relationship, with someone, but you can’t even take an underwear catalogue from the mail to imagine such a thing happening. Soon psychologists come to visit you, one after the other, to talk to you, watch you, and write things about you. Meanwhile, all you can do at home is watch TV, which you don’t get to pick the channel, and listen to the radio, of which is always on country music, which you hate. But as people heard you grew up on a farm, they assume it’s your favourite music. You’ve never had a drink at the pub, and you’ve never felt what being drunk is like, but you definitely, repeatedly know what being drugged up is like. You’ve never even been to the ekka, or to a zoo, or a concert, or the theatre.
You don’t have energy to think about what you might want to do with your life on a grander scale… travelling, hobbies, exploring, even working. Because the smaller basic things need to be met first.
Imagine that where you live is an area 2 hours away from where anyone you could identify as your biological family live, who you go to visit maybe every once every six months. When you visit, your whole household come with you, so you don’t even get to spend two hours of private quality time with these family members. You could develop close bonds with the people who work with you every day, but within a few years of developing an attachment with one or two, they are moved on to another house, without much explanation from you, never to be seen again, leaving you confused, heartbroken, and trust-broken. Before living here you were in an institution, but at least there were more people in your life then, a few you even considered your friends. Now you never see them, except at department organized Christmas lunches and dances, which make you anxious as you're not used to so much activity and energy in one small room.
Imagine if this was your life, completely, and totally, and there was nothing that was going to change whatsoever, until you become too frail to be cared for, put into a nursing home, or deteriorate to the point that a cold turns into pneumonia which sends you dying on the hospital table hours later. Or they discover you have had cancer for months just that little too late.
Would you be depressed?
Not so oddly enough, a lot of the adults I worked with, were diagnosed with depression. A number of them also presented with behavioural ‘problems’, which needed solutions. Solutions that involved getting them involved in valued roles, getting to choose what they wanted to do with their day, having more time doing these things, and developing long lasting relationships with people that cared about them.
Solutions that myself, nor their carers (as well meaning and caring as they could be), nor the system, could actually carry out.
Why?
Because the system doesn’t allow for it. There is simply not enough money to change things. All of us who work in adult disability services have the opportunity to do is provide band-aid solutions for problems that won’t go away, because they’re so set in, thanks to a deeply flawed system. A system that really, doesn’t care enough about them.
Disability affects EVERYONE. The other side of this coin, is with the people I work with today, young children with diagnosed developmental delays who need all the early intervention they can get, to prevent them ever ending up in a the above ‘hypothetical’ situation. This is absolutely crucial. Because unfortunately the above ‘hypothetical’ situation, is in no way hypothetical. It is extremely real.
I know it’s hard for you to imagine, Campbell, because it’s hard to put yourself into someone’s shoes until you actually go and spend time with them. But disability affects EVERYONE. You could have a stroke tomorrow and wind up in the exact same situation. And, were you not so lucky to land a cushy job as premier, you would be crying out for the support you just can’t afford. And it will have been you who has prevented this support from being available.
We treat people with disabilities like they are lesser, invisible people who don’t deserve a say because they lucked out. We treat people who don’t communicate in the exact same complex way that you and I do, as if they have nothing to say. We need to ask them what they want, and we need to have the means to give them what they want. Right now, they’re stuck. We can’t leave them stuck until we have ‘enough surplus’, or until you’ve fired as many valuable public servants as you can (some of whom work in disability services). Because by the time that happens, so many of these people will have deteriorated, so many of them will have given up. This isn’t a ‘hmm, maybe we should, maybe we shouldn’t’ decision. This is a motherfucking necessity. We need this. Tax me as much as you like, reduce the money you're handing to the disagreeable (imo) racing industry, get rid of those bloody citycycles, give me one less train to Ipswich a day (which is always late anyway), take the plants out of my office, I don’t care, just put some money in to the NDIS, and stop being a douchebag about it.
Yours, faithfully,
ladygrinningsoul
Campbell: loves his bloody citycycles.
Great blog, Steph.
ReplyDelete