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 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.

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.

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)

Deeply, movingly human, Kate - and I can’t think of higher praise than that.

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…

Your last couple of paras are so tellingly obvious that they are painfully true.

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.

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.

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.