His face is twisted, red and purple blotches smear across his straining cheeks, spit hangs from his grimacing mouth. He is hammering his own fists into his chest, with a rib-breaking bang bang bang and all the while he is making a horrible, repetitive “nah nah nah” grunting sound.
The teenage girls dart away from him in a flurry of blue school skirts, with sniggering laughs, one runs up to flick his baseball cap and just misses his flailing fist. There’s a rubbish bin and he suddenly lunges for it and throws it at one of the girls, it smashes beside her and pie wrappers and coke cans fly off in every direction. The girls start screaming and there’s a teacher there and I am too, I run to my brother and grab his hands even though he’s so big and I try to stop his fists from bruising his chest again.
The teacher takes him to the office and he’s too distraught to speak clearly for a while, he evades their eyes and his agitation grows as they try to find out what happened. It was one of the younger girls, they like to tease him, he’s a lumbering boy and they run up and try to knock his cap off his head.
Every day, every recess, he likes to take empty coke bottles and pretend to play the drums on a bench and these girls, these little bitches, they try to take his cap or his wallet and sometimes they’re nice, they pretend they like him and then they steal his packet of chips. He puts up with it for a while and then he snaps, once a week, every second day, every lunchtime. He’s thirteen years old.
He is three years younger than me and I resent him, like I resent the end of the school holidays, like I resent my glasses and tests and other people, but I will protect him as much as I can. It’s not much. I can’t do much. I feel the stares of the boys as I walk back to my lunch and know they think it’s somehow stupid to get involved. That we’re both freaks, the retarded boy and his chubby, sullen sister. I sit down and return to my sandwich. My friends pretend nothing has happened. Nothing will happen again every week or so until I leave high school.
He is four or five years old and he loves his Winnie the Pooh video and watches it every day. One day we are playing in the yard. It has been raining. I go back inside and when I come out he’s taken off his clothes and has wandered down the driveway. Mum comes out as I call her and we hurry up the driveway as he lies down in the big mud puddle and rolls around.
He smiles his beautiful smile up at us, his icy blonde hair plastered down with mud. “I wanted to be a little black rain cloud,” he says, and we remember his Winnie the Pooh video, where the bear does the same thing to try and steal honey. For a moment he seems like a normal boy.
He was the most gorgeous child, with his see-through skin and his brilliant blue eyes. It was when he was about two that my parents began to suspect that something was different, when words didn’t come and toilet training was impossible. It took several years for a diagnosis, and by then I’d grown to hate him, this changeling in our family. He used to shit himself regularly and I called him the “pooey monster” and would run away from him. As we grew older he found my sneezes (common with hayfever) so painful that he’d start banging himself in the ears if I sneezed. He would take off his clothes at the worst possible moments. He was embarrassing and humiliating and I hated him. But I loved him too, though it’s harder to remember that, and I got into a fight with a girl at school once who teased him. I used to dream that I would wake up and he would be normal.
Now he is 23 and we are working in my parent’s shop and I am teasing him about his girlfriend. She is 40 and lives in Mildura. I say, “You need a girlfriend your own age.” He says, with a small little dip of his head, his eyes sliding away and his skin flushing just a little, “but none of the girls like me”. He knows he is different.
He works in my parents’ shop all day. I have come home for four weeks so my parents and other brother can go on holidays. He didn’t want to go because they’re going to Vietnam and Cambodia and he doesn’t think he’ll like the food. He like chips and pies and McDonalds, so my parents ask me to stay with him, run their business, while I’m between writing jobs.
He works as hard as anyone I’ve ever met, harder than I do, but no-one except Mum and Dad will give him a job. So, they mortgaged their house, they put their lives on hold, and they bought a business which they now work in every day of the week.
My mother told me the other day how she worries about what will happen when they grow tired of the never-ending work. “I’m weary,” she said. “I need a rest. But what will your brother do if we sell the shop?” It’s a good question, and one echoed by my own questions: What will we do when my parents aren’t around?
My brother was diagnosed with Autism as a small child, but in recent years it seems his diagnosis is probably closer to Asperger’s Syndrome, as he is extremely high functioning in many ways. He doesn’t require 24-hour supervision. He works and he interacts with others on a very mature level, his aggression issues have settled down, the taunting of girls no longer bothers him.
He couldn’t get work in our small town until my parents bought the business they now run. He is their main employee and works from 7am to 7pm every weekday, and spends his money on CDs and baseball caps and trips with the local sheltered workshop group. If my parents weren’t around he’d be living on the disability pension.
My brother works hard, but he couldn’t get work elsewhere because people don’t like to be confronted by the unnatural, the not normal, the way he doesn’t like to meet their eyes and how he gets stuck on certain topics and sometimes he forgets to brush his teeth. But he’s not so strange. He’s a big boy and he loves to eat, he hates to shave and his favourite t-shirts have sports logos on them. He loves Metallica and Eminem and playing his Xbox. He gives me a big hug every time I come home and tells me how much he misses me.
If something happens to my parents, I am his legal guardian. I’ve been so since I was 21. I will do my best to look after him, and I see his worth as a human being again and again. But I know it will be hard, and I hope it won’t happen for many years, not just because I love my family and don’t want anything to happen to them, but also because I’m afraid of the responsibility.
I tell this story because it is people like my brother who fall between the cracks of economic rhetoric and political chatter. There are hundreds of thousands of such stories, such lives. Sometimes, yes, there are people who take advantage of the system. But many, many times, there is genuine need, only in our world, there isn’t much room for people like my brother. We’re all told to be productive and buy houses and do these things to be good citizens. We are a good society, a productive society, we pat ourselves on the back for our hard work, we deserve it.
I don’t think this success measures what sort of people we really are. I think the true evaluation of our worth is how we treat the poor, the dispossessed, the disabled. Yes, personal responsibility is important, but so is the way we treat those who cannot take that responsibility, through no fault of their own. My brother didn’t ask to be born disabled, yet he is, and he is as much a part of our society, contributing as much as a wealthy stockbroker or a politician.
My brother doesn’t deserve our pity. What he and the thousands of others like him do deserve is our support.
Simply marvellous Kate. I’d like to comment more but it’s late and I wouldn’t do justice to the sentiments you’ve expressed. That there are those whose circumstances transcend ideological fixes and grand market-driven plans is axiomatic to me. You’re keeping that truth alive and I congratulate you for the personal and engaging way you’ve done so here.
Simply marvellous Kate. I’d like to comment more but it’s late and I wouldn’t do justice to the sentiments you’ve expressed. That there are those whose circumstances transcend ideological fixes and grand market-driven plans is axiomatic to me. You’re keeping that truth alive and I congratulate you for the personal and engaging way you’ve done so here.
x 2.
x 2.
Beautiful, lyrical stuff Kate. My story – and my brother’s – too
Beautiful, lyrical stuff Kate. My story – and my brother’s – too
Kate, what a wonderful and touching story that shows the human side of disability. This is something that is all too often forgotten by those in positions of power.
Kate, what a wonderful and touching story that shows the human side of disability. This is something that is all too often forgotten by those in positions of power.
Kate, that was just brilliant.
Kate, that was just brilliant.
I think this is the best post I have read in the ‘sphere for ages.
I think this is the best post I have read in the ‘sphere for ages.
Wonderful stuff Kate.
Wonderful stuff Kate.
What everyone else said – brilliant work, Kate.
What everyone else said – brilliant work, Kate.
Beautifully written and moving, Kate.
Beautifully written and moving, Kate.
Hi everyone. My brother’s name is Simon.
My parents are the most amzing people in how they have dealt with the challenges his disability has presented, and we are a very lucky family in many ways. My parents have worked very hard to make sure Simon has a future.
I have seen so many disabled people without that back-up, with poor families or no families or abusive families. Society does make some moves to filling that gap, but resources — in education, in respite care, in housing, in the job market — are very stretched.
Meanwhile, Australia has an incredibly high standard of living and we are constantly told of our prosperity. I don’t begrudge people prosperity in anyway, in fact, my family is amongst the lucky ones who have become much more prosperous over the last two decades or so. We’ve gone from lower-working-class rural poor to middle class and in my case, urban, and well off, in the space of my parents’ lifetime. And that has helped all of us.
However, I do wish that compassion was a more common virtue in our society. To clarify, I don’t think people aren’t compassionate, I just think it’s easy to not see the problems that are out there.
Anyway… thanks for all your kind responses.
Hi everyone. My brother’s name is Simon.
My parents are the most amzing people in how they have dealt with the challenges his disability has presented, and we are a very lucky family in many ways. My parents have worked very hard to make sure Simon has a future.
I have seen so many disabled people without that back-up, with poor families or no families or abusive families. Society does make some moves to filling that gap, but resources — in education, in respite care, in housing, in the job market — are very stretched.
Meanwhile, Australia has an incredibly high standard of living and we are constantly told of our prosperity. I don’t begrudge people prosperity in anyway, in fact, my family is amongst the lucky ones who have become much more prosperous over the last two decades or so. We’ve gone from lower-working-class rural poor to middle class and in my case, urban, and well off, in the space of my parents’ lifetime. And that has helped all of us.
However, I do wish that compassion was a more common virtue in our society. To clarify, I don’t think people aren’t compassionate, I just think it’s easy to not see the problems that are out there.
Anyway… thanks for all your kind responses.
Hi Kate,
I’d like to add my thanks for the honesty of your post about Simon.
I have a son (age 9) who has a severe disability, as well as a daughter (age 7) who has no disabilites. I frequently think about the effect this must have on my daughter, and love to hear the stories of others who deal with similar situations. Many adults who have grown up as the sibling of a person with a disability are so very bitter about what their childhood was like. This is something I would like to prevent for my daughter.
It is very difficult to ensure that things are fair for both of the children. Well-meaning people often make this even more difficult. For example, I walk my daughter to school each day, and sometimes bring my son in the wheelchair. On days that I bring him, so many people greet him by name, while my daughter gets no mention or greeting at all! Is she not also a real person?
I can really empathise with your fear for the future, and that of your parents. Knowing that our son will require 24 hour care for the rest of his life is scary, because we are responsible for that care, but we are not going to live for ever. And I am afraid to place that burden of responsibility on our daughter when she is older. That doesn’t seem fair either. So Kate, thank you very much for your post. It is good to hear your point of view about these issues.
Tamara.
Hi Kate,
I’d like to add my thanks for the honesty of your post about Simon.
I have a son (age 9) who has a severe disability, as well as a daughter (age 7) who has no disabilites. I frequently think about the effect this must have on my daughter, and love to hear the stories of others who deal with similar situations. Many adults who have grown up as the sibling of a person with a disability are so very bitter about what their childhood was like. This is something I would like to prevent for my daughter.
It is very difficult to ensure that things are fair for both of the children. Well-meaning people often make this even more difficult. For example, I walk my daughter to school each day, and sometimes bring my son in the wheelchair. On days that I bring him, so many people greet him by name, while my daughter gets no mention or greeting at all! Is she not also a real person?
I can really empathise with your fear for the future, and that of your parents. Knowing that our son will require 24 hour care for the rest of his life is scary, because we are responsible for that care, but we are not going to live for ever. And I am afraid to place that burden of responsibility on our daughter when she is older. That doesn’t seem fair either. So Kate, thank you very much for your post. It is good to hear your point of view about these issues.
Tamara.
Thank you
Thank you
A well-written, very touching and sobering post.
A well-written, very touching and sobering post.
Hi Tamara,
Thanks for your comment.
I’m not bitter about my childhood, I love my brother deeply, and I realise why my parents required me to be more grown up than would have otherwise been the case. I am honest about resenting Simon and sometimes I still feel echoes of that childish response, but mostly I’m OK with the fact that maybe my parents spent less time with me and paid more attention to my brother. But… they loved me, they gave me everything I needed, they were wonderful parents in every way, only they had to be more wonderful with Simon.
My parents have the same fears, this terrible knowledge that one day they won’t be around but Simon probably will. Who steps up then? I am happy to do that because we’re a family… and I know my parents grapple with the same thing, that they have given me this responsibility and it wasn’t something anyone intended but it’s there. I think each family has to negotiate this territory and it’s bloody hard for everyone.
As I said, we’re lucky. He’s really high functioning and takes care of himself — to a certain level — very well. It’s so much harder with children who require more support, and I empathise with you as much as I can. I have met many children and adults with much more severe disabilities than Simon and I marvel at their parents, who are usually the most amazing people I’ve ever met.
Anyway, Tamara, if you want to discuss anything further I am happy to give you my email address.
Hi Tamara,
Thanks for your comment.
I’m not bitter about my childhood, I love my brother deeply, and I realise why my parents required me to be more grown up than would have otherwise been the case. I am honest about resenting Simon and sometimes I still feel echoes of that childish response, but mostly I’m OK with the fact that maybe my parents spent less time with me and paid more attention to my brother. But… they loved me, they gave me everything I needed, they were wonderful parents in every way, only they had to be more wonderful with Simon.
My parents have the same fears, this terrible knowledge that one day they won’t be around but Simon probably will. Who steps up then? I am happy to do that because we’re a family… and I know my parents grapple with the same thing, that they have given me this responsibility and it wasn’t something anyone intended but it’s there. I think each family has to negotiate this territory and it’s bloody hard for everyone.
As I said, we’re lucky. He’s really high functioning and takes care of himself — to a certain level — very well. It’s so much harder with children who require more support, and I empathise with you as much as I can. I have met many children and adults with much more severe disabilities than Simon and I marvel at their parents, who are usually the most amazing people I’ve ever met.
Anyway, Tamara, if you want to discuss anything further I am happy to give you my email address.
A few years ago, I went out with a woman who was working as a disability advocate. She didn’t think there’d been any studies on this, but she said she came across again and again parents in their 70s and in a couple of cases 80s and 90s, who died shortly after their severely disabled adult children (in their 40s or 50s) had been approved for a level of government funding to provide care commensurate with their needs. She remarked that it was as if they were hanging on to life until they could be sure that their children would be looked after in their absence. There are lots of issues here, but adequate levels of government support is also one of them, as I think Kate implied.
A few years ago, I went out with a woman who was working as a disability advocate. She didn’t think there’d been any studies on this, but she said she came across again and again parents in their 70s and in a couple of cases 80s and 90s, who died shortly after their severely disabled adult children (in their 40s or 50s) had been approved for a level of government funding to provide care commensurate with their needs. She remarked that it was as if they were hanging on to life until they could be sure that their children would be looked after in their absence. There are lots of issues here, but adequate levels of government support is also one of them, as I think Kate implied.
Hey Kate, beautiful, lyrical post.
Your last couple of paras are so tellingly obvious that they are painfully true.
Hey Kate, beautiful, lyrical post.
Your last couple of paras are so tellingly obvious that they are painfully true.
Personal and political
Do yourself a favour and read this superb post by guest contributor Kate at Mark Bahnisch’s Larvatus Rodeo (can’t help calling it that – I blame Nabakov). My sister Lynne has an intellectually handicapped daughter in her mid-twenties. She and…
As I said on the other thread: with guest bloggers like Kate and Naomi….
Deeply, movingly human, Kate – and I can’t think of higher praise than that.
As I said on the other thread: with guest bloggers like Kate and Naomi….
Deeply, movingly human, Kate – and I can’t think of higher praise than that.
A very thoughtful and moving piece of prose. As someone said, we can choose our friends but not our family. And so often they can become the hardest cards to play in each person’s game of life. At least yer brother sounds like he’s in good hands. So many others are not so lucky with the family they get dealt. Yes, it may have been hard for you at times, but think how much harder it would be for him if you weren’t you.
And tell your parents to put Hoi An on their Vietnam itinerary if they haven’t already (and to have sundowner drinks at the Saigon Times Club rooftop bar there while they’re at it)
A very thoughtful and moving piece of prose. As someone said, we can choose our friends but not our family. And so often they can become the hardest cards to play in each person’s game of life. At least yer brother sounds like he’s in good hands. So many others are not so lucky with the family they get dealt. Yes, it may have been hard for you at times, but think how much harder it would be for him if you weren’t you.
And tell your parents to put Hoi An on their Vietnam itinerary if they haven’t already (and to have sundowner drinks at the Saigon Times Club rooftop bar there while they’re at it)
Kate, a wonderful piece of writing and an incredibly moving subject. It deserves to be widely read.
Kate, a wonderful piece of writing and an incredibly moving subject. It deserves to be widely read.
Wonderful. I’m too afraid to add much more lest it seems trite.
Wonderful. I’m too afraid to add much more lest it seems trite.
A moving and wonderful story. You should be proud of what your parents (and you, too, for that matter) have done for Simon.
It is also a timely reminder of how much dignity and self-respect comes from paid work.
When I was an Employment Counsellor I dealt with the retrenched from Fletcher Jones. It was a revelation. There were people with physical disabilities, marginal intellectual disabilities, deafness. Most were middle-aged and had held jobs at FJs for 20 years or longer.
I have no doubt that the majority carried out their duties satisfactorily, and yet they were virtually unemployable. Those type of factory machinist and associated jobs simply disappeared with the dropping of TCF tariffs.
As an economy, we are better off for these changes. But I wonder if enough thought was given to the alternatives for many of these employees. The market cannot help much. Perhaps there should be investment in some employment options (such as Kate’s parents have done), even if they are relatively unprofitable. It gives people so much more dignity to be able to work and be paid and not depend on disability or unemployment benefits.
A moving and wonderful story. You should be proud of what your parents (and you, too, for that matter) have done for Simon.
It is also a timely reminder of how much dignity and self-respect comes from paid work.
When I was an Employment Counsellor I dealt with the retrenched from Fletcher Jones. It was a revelation. There were people with physical disabilities, marginal intellectual disabilities, deafness. Most were middle-aged and had held jobs at FJs for 20 years or longer.
I have no doubt that the majority carried out their duties satisfactorily, and yet they were virtually unemployable. Those type of factory machinist and associated jobs simply disappeared with the dropping of TCF tariffs.
As an economy, we are better off for these changes. But I wonder if enough thought was given to the alternatives for many of these employees. The market cannot help much. Perhaps there should be investment in some employment options (such as Kate’s parents have done), even if they are relatively unprofitable. It gives people so much more dignity to be able to work and be paid and not depend on disability or unemployment benefits.
What everyone said, Kate. Thankyou.
What everyone said, Kate. Thankyou.
That will stay with me. Thank you.
I do wonder sometimes about the gulf between families who step up and accept the need for care, and those that never have that challenge. There seems to be a sort of life-and-politics position that says “I’m alright Jack” and I’ll keep earning money and get prosperous and our kids will go to good schools and I’ll entertain myself with our toys and the dream will be real and absorbing and we’ll never think about deeper meaning because it is about getting ahead and passing it on to the kids.
We can watch the evening news and see the mouth parts of those creatures move and know that they truly believe they are better than other people because they have accumulated a bigger heap of shiny stuff, like the boss magpie in the forest. It seems obvious to them that they are entitled to more.
These are ideas that drive the ideology of our society. Only the weak need welfare. Only suckers lose their money. Only victims get ruined by divorce. Only fools have children who go off the rails.
And yet, on the ground, in reality, so many of us do end up caring for each other. We do discover that the relentless march to family prosperity is an illusion. That life is not about accumulation. That top dog is not best dog. That we are in this together.
The world is actually made up of a bloody huge lot of good people, and we are running our country for a very small, selfish minority. Of people who are, ironically, morally and spiritually disabled.
That will stay with me. Thank you.
I do wonder sometimes about the gulf between families who step up and accept the need for care, and those that never have that challenge. There seems to be a sort of life-and-politics position that says “I’m alright Jack” and I’ll keep earning money and get prosperous and our kids will go to good schools and I’ll entertain myself with our toys and the dream will be real and absorbing and we’ll never think about deeper meaning because it is about getting ahead and passing it on to the kids.
We can watch the evening news and see the mouth parts of those creatures move and know that they truly believe they are better than other people because they have accumulated a bigger heap of shiny stuff, like the boss magpie in the forest. It seems obvious to them that they are entitled to more.
These are ideas that drive the ideology of our society. Only the weak need welfare. Only suckers lose their money. Only victims get ruined by divorce. Only fools have children who go off the rails.
And yet, on the ground, in reality, so many of us do end up caring for each other. We do discover that the relentless march to family prosperity is an illusion. That life is not about accumulation. That top dog is not best dog. That we are in this together.
The world is actually made up of a bloody huge lot of good people, and we are running our country for a very small, selfish minority. Of people who are, ironically, morally and spiritually disabled.
i can relate to everything you have said here kate. i was diagnosed with asperger’s syndrome a little over a year ago (in my early 30s).
i’m a lawyer. it took four years for me to get employment that actually required my (not inconsiderable) qualifications. apart from a few years as a computer programmer in the early 90s, much of my employment has been significantly below my aptitude.
in some ways i am very fortunate to be at the ‘near normal’ end of the autism spectrum. it has been relatively easy for me to learn better adaptation skills. but it has also been much harder to have my ‘idiosyncracies’ recognised and accepted as something more than me being a ‘little wierd’.
i’m very open about my diagnosis, and am curious that, having finally got past the door, i not only perform as well any anyone else – but until i mention it, no one has any inkling.
when certain people feel the need to express how hard they have to work to overcome life’s little obstacles, i find it hard to resist describing my typical day at the office as i try to deal with them – let alone my own little problems.
my life would be a lot less complicated if i had some job security rather than a series of short-term contracts so that i can become comfortable enough to drop some of the layers of behavioural adaptations i have to use at work. it would also be nice if more people were more tolerant of difference so that i didn’t have to work so hard to keep up with the “appearances” game.
i can relate to everything you have said here kate. i was diagnosed with asperger’s syndrome a little over a year ago (in my early 30s).
i’m a lawyer. it took four years for me to get employment that actually required my (not inconsiderable) qualifications. apart from a few years as a computer programmer in the early 90s, much of my employment has been significantly below my aptitude.
in some ways i am very fortunate to be at the ‘near normal’ end of the autism spectrum. it has been relatively easy for me to learn better adaptation skills. but it has also been much harder to have my ‘idiosyncracies’ recognised and accepted as something more than me being a ‘little wierd’.
i’m very open about my diagnosis, and am curious that, having finally got past the door, i not only perform as well any anyone else – but until i mention it, no one has any inkling.
when certain people feel the need to express how hard they have to work to overcome life’s little obstacles, i find it hard to resist describing my typical day at the office as i try to deal with them – let alone my own little problems.
my life would be a lot less complicated if i had some job security rather than a series of short-term contracts so that i can become comfortable enough to drop some of the layers of behavioural adaptations i have to use at work. it would also be nice if more people were more tolerant of difference so that i didn’t have to work so hard to keep up with the “appearances” game.
Ah Katie, though I know your story already, this time you made me cry. You are a talented writer and a beautiful person – keep up the good stuff, you raise us all up.
Ah Katie, though I know your story already, this time you made me cry. You are a talented writer and a beautiful person – keep up the good stuff, you raise us all up.
Kate, what a beautiful honest account of your family and precious brother Simon. Simon is truly a blessing, and oneday the world will forget about ignorance and see the Simons of the world as I do. Your message should be applauded, along with your honesty. You too are a blessing. All my love to you and your precious family. XXX
Jan (just a mum of nine)
Kate, what a beautiful honest account of your family and precious brother Simon. Simon is truly a blessing, and oneday the world will forget about ignorance and see the Simons of the world as I do. Your message should be applauded, along with your honesty. You too are a blessing. All my love to you and your precious family. XXX
Jan (just a mum of nine)