two conversations

a few weeks ago we went to a movie screening at the hamilton disability pride film festival. i'd heard about it by chance, and almost missed a brilliant film! 'king gimp' tells the story of artist dan keplinger, who has cerebral palsy. the film is an honest documentary of 13+ years of dan's life. though the background music can get a little over powering, the movie is largely shot in an unsentimental matter-of-fact style. in fact dan quite effectually punctures one of the more emo scenes with some bitingly dark humour. dan managed to make it through school, and decided to go on to college to study art. in spite of rejection from some teachers, he makes it through, graduating to a standing ovation. more than just a record of daniel's struggle, the film also effectively speaks of how we can individually make a difference to the lives of others.

around the same time, i was reading 'growing up severely autistic-they call me gabriel' by kate rankin. written about her autistic son, this book gave me a kick-in-the-balls perspective on what it means to be the parent of a severely autistic child. again written with little sentimentality, it is a journal of life with gabriel and the sheer amounts of work it takes to bring up an autistic child, even with physical and financial support from the government. how do parents without that support cope?

all of which brings me to two conversations i had. the first was with a care-giver for an autistic child at the RDA. she mentioned that the child had never been visited by her parents after they gave her up to full time care, which was a few years ago. it quite upset me then, and still does, but after reading this book i think i can understand why some parents would be unable to cope. taking care of an autistic child has a social cost in addition to the already high financial and emotional costs. while some autisic children have special talents to 'make up' for their disability, most (like the rest of us) do not, and are stuck in an internal world that often doesn't make sense to the external one. like many autistic children in aotearoa NZ, gabriel eventually had to move to full time care in an institution set up for the purpose.

the second conversation(s) was with a lady from mumbai visiting family in hamilton, who was paralysed waist down after a gymnastic accident. JA was delighted at the chance to ride (with help) and only got off each day with the greatest reluctance. while she resolutely refused to complain, we spoke of how her sister had to carry her up three flights of stairs back home because the building they lived in didn't have a lift and how difficult it was for her to get around in her wheelchair- apparently even hospitals do not necessarily have disability access. she was working from home, as any trips outside were emotionally and physically fraught. in spite of all this, JA's spirit seemed unbeatable. she was always glad to ride, even when it was in the most extreme cold she had known. she was always ready for a trot and managed to push us, horse and sidewalkers, to do more and do better. i have had the most exercise in the weeks she was here. back in mumbai though, she will be confined to her third floor flat again.

while most of us are (rightly) horrified at the persecution of the disabled that the nazi party unleashed, i sometimes wonder if it is really very different now. we have tucked the disabled away out of sight. our lifestyles make little provision for their needs, and government policy often ignores them. even the human rights organisations seem to have forgotten them, rarely speaking out for disability rights! one of the senior teachers at a special needs school i have just joined pointed out two boys to me, and said that with their behavioural problems, they would have been in jail if they weren't in school. makes one wonder-how many disabled people actually are locked away in jails, institutions or homes? out of sight and out of mind?

watch some clips of 'king gimp' here, and read the first few pages of 'they call me gabriel' here.

horseback perspectives

It’s hard to be unemployed. It’s hard not to have the monthly salary come in, hard to budget carefully, hard to decide whether we can afford this doodle or that doodah. Hard to talk to family and friends, hard when meeting strangers, hard to believe in yourself. Then I met TS*.

For a little over a month now, I have been volunteering three days a week with the Hamilton Group Riding for the Disabled Association (RDA). The RDA works with the physically/intellectually disabled, helping them by teaching them how to ride. This is therapeutic at both physical and emotional levels. My job is primarily to lead horse and rider around an arena, sometimes a paddock, and when lucky, a walk in the country. The ultimate goal is to help the rider (mostly children) canter on their own.

When I first met TS, I was told I needed to go with him because he disliked women, and was known to have slammed his mother against a wall. TS is autistic, and can barely talk. Most of our conversations have been rather one sided, with me prattling about the weather, and TS responding with the occasional “Yeah”. He finds it hard to hold himself upright, especially when we trot. He cannot comprehend right and left, and so finds it difficult to steer the horse. His favourite activity apart from the horse riding seems to be story writing, which always go-“Dear TS” and stop. When asked, he tells me that the grass is red and the sky is green. And the tractor is purple. And his favourite song (I haven’t managed to catch it yet) is by the Bee Gees. I am really excited because TS has started pulling the reins and trying to guide the horse.

Point is, it is unlikely that TS will ever be ‘employable’. He may always need care. I don’t know if he’ll ever fall in love or get married. Or move to another country. He may never ride a Yezdi** in the pouring rain with his mates (David and Venky, I still love that trip). Or argue politics on Facebook. He may never play a power chord or the drums. Or Football. Or Scrabble. And suddenly, perspective changes.

I know I have family who love me (most days, at least). Many of the children who come to the RDA live with caregivers, not parents. I hear that some parents haven’t had any contact with their children for years on end. I am married to my best friend. I have friends (um, I do, right?). I can write. Read. Work. Break bottles. Volunteer at the RDA. People visit my blog (!). There are so, so, so many things I have. It’s not that I don’t have a job-it’s just that I am not paid for it. Not in money, at least. Not yet.

It still isn’t easy being unemployed. I really do hope to get a paying (money) job soon, doing something I love. But it simply isn’t as hard, anymore. TS has problems. But he sings Bee Gees and rides his horse and things are better, somehow. I really hope the therapy at the RDA is helping him. It sure is helping me!

*Name changed to protect privacy.

**The best motorcycle in the world. Just a little smoky.