This morning I made it back into the pool for the first time in two months, due to various permutations of cold/flu/sinus infection that have left me perpetually exhausted. It was delicious it was to be back in the water, stroking through my very slow laps with the sun falling onto my back, and as I swam I thought about people who couldn’t simply get on a bike, ride to a pool, wrestle themselves into their togs and dive in, because they had disabilities, and didn’t have the support they needed to get into the water.
This was a week in which I became immensely frustrated by the manifestation of selfishness across Australia. After Julia Gillard’s proposal to increase the Medicare levy by half a percent to help fund the National Disability Insurance Scheme, cyberspace exploded with rants on yet another tax, wasteful spending, I-want-to-help-disabled-people-but-I-don’t-want-to-give-up-two-coffees-a-week while, to top it off, the CEO of Myer had the effrontery to suggest that the tax was going to harm business, and made a sloppy, half-hearted apology. Fortunately, there are sensible writers such as Ben Eltham at New Matilda who point out that the NDIS makes economic sense in the long run because, as he notes, ‘it will bring people into the workforce who are currently unable to work – not just the disabled themselves, but also their carers and family members.’ I’m writing this post because I exemplify Eltham’s argument.
When I was nearly four, meningitis wiped out all but 25% of my hearing. I have no hearing in my left ear, and half in my right, which is a diagnosis of severely-to-profoundly deaf. I wear a hearing aid in my right ear, and use an FM system if I attend lectures, or if I’m teaching classes at uni. I can hear in a group of two other people in quiet situations, but beyond that it’s really hard work as I have to mostly rely on lipreading, which takes an enormous amount of concentration and energy. Talking in bars is just about impossible, what with loud music and alcohol impairing my concentration, so I usually just give up on socialising and go dancing somewhere.
My father was a farmer who couldn’t leave the land, and I was too young to be sent to the deaf school in Sydney (an eight-hour drive away), so I went to the local primary school of 100 kids in Boggabri with my brother, sister and cousins. The school had its floors carpeted to help with the acoustics (which wasn’t too hard as it was a very small school), while Hearing Australia paid for my hearing aids and FM system (until I was 21), and for an itinerant teacher to visit me once a week. Mr Tony was the first one from Kindy to Year Two, and then he was replaced by Mrs Tibbits, who stayed until year 6, and helped with my speech therapy. I was given the FM system in Year 4 and it was a godsend, because it meant I didn’t have to strain so hard to listen (and they’re even good for kids who do have hearing, because they make the teacher’s voice so clear). Sometimes the teacher, who was also the headmaster, would forget to turn off the transmitter when he went out so I heard him talking on the phone, and pretended complete innocence when he came back into class.
I went to secondary school in Gunnedah. My sister was sent to boarding school in Armidale, but that school wouldn’t let me board because they’d had a bad experience with a previous girl who was deaf. These days, this would have been grounds for suing for discrimination, but Mum wasn’t aware of those kinds of rights then. As it transpired, we moved to Armidale when I was 15, and I went to the school as a day girl and became one of their top students.
Those years in secondary school in Gunnedah were harrowing. In the small primary school in Boggabri I’d been fine because I knew everyone there, and my siblings and rellies were at the school. There were occasions on which I wasn’t invited to birthday parties, or in which the visiting chaplain wouldn’t put me in the nativity play, because I had a disability, but Mum usually came down on those people like a ton of bricks and (nicely) sorted it out. Mostly it was misunderstanding, and a bit of social stigma, but really, life could have been worse. As I moved into adolescence, however, social situations became far more nuanced, and because I didn’t have enough hearing to overhear conversations and understand how people communicated, I couldn’t make friends. I was ostracised, which was an experience so painful that even now, as a confident and capable woman, I still panic about being left out of things by friends. I could have done with a counsellor then ( and most schools have them these days, which is good), but I eventually worked things out by watching people, and forcing myself to interact (or rather, by obeying my mother, who told me to talk to people instead of reading books). By the time I got to the school in Armidale I was coping much better, and made good friends there who I still have today.
On the plus side, isolation meant that I studied and worked hard, and turned to writing as a way to deal with the stress and social soreness that I repeatedly encountered. My good grades gave me confidence, and my parents indoctrinated me with the belief that there was nothing I couldn’t do and so, even despite the anxiety and exhaustion occasioned by my deafness, I found temping and office jobs each summer to help pay my way through uni.
For the summer between finishing my undergraduate degree at Wollongong and starting my Masters at UTS, I found work as a Christmas casual at David Jones. Part of the reason for wanting to do a customer-oriented job was because, as a deaf person, people generally thought that I couldn’t do it and, having a perverse and stubborn streak, I like to prove people wrong. I also genuinely enjoy meeting new people, despite the effort involved with socialising. There probably were a few occasions on which I didn’t hear a customer asking me for something, as a more experienced staff member who I worked with mentioned she explained to the customer that I couldn’t always hear, but it certainly wasn’t the end of the world. It would seem that DJ’s is slightly better than Myer in the disabilities department, and if you’d like to pressure Myer into doing something about their appalling attitude to people with disabilities, Graeme Innes, the Disability Discrimination Commissioner, has set up a petition.
Later, when I was living in London and studying for my PhD, I worked on the desk at University College London library, checking out books to students and academics and answering questions. UCL installed a loop system for me which didn’t work very well because they’d got the cheapest possible model and it broke (although they were obliged to have a decent working system not just for me, but also for deaf patrons), but I hooked up my FM system and that was more successful. They also gave me a phone with volume on it, and if there was a call that I really struggled with (for example, if the person had an accent) then my lovely colleagues were always happy to help out.
I have also won several scholarships to help fund my studies, including a Study Abroad scholarship to the University of California, Berkeley, and it was there that, for the first time ever, I felt like I fitted in, because it was a place that encouraged diversity. There were a few problems, in that, in my (ironically titled) Identities Across Difference class, Professor Trinh T. Minh-Ha wouldn’t wear the FM transmitter because, as she said, ‘It changes the way I speak!’ Perhaps she didn’t understand how the transmitter worked, because it only amplified her voice for me, the person who was wearing the receiver, and not for the whole class. She agreed to have it on her desk, which didn’t really help, and the nice man at the Disability Office said by law she had to wear it, but I was too young and too nice to want to make waves, so I just struggled on.
The reason why I have rendered all this is to indicate that, with help from the government, my parents and siblings, I have become a successful writer and contributing member of society. I have always been able to find a job and, although I have sometimes been curtailed by the exhaustion of my disability, the accommodations that have been made for me have helped to alleviate this. I am a well-spoken, intelligent and articulate woman who pays taxes and I AM PROOF THAT FUNDING WORKS.
I understand that people are upset with Labor’s economic mismanagement (as I am too: I was ropable they expect already band-aided universities to make ‘efficiency dividends’ to pay for primary education) and that they’re concerned this money will not be justly spent. I understand too that things are tight for people who are trying to juggle mortgages, new school uniforms, holidays, cars and, now, disability insurance, but we are a wealthy society (just visit India for a comparison), we aren’t heavily taxed in comparison to other nations and we have so many opportunities that it’s obscene to complain.
Finally, one day your son, daughter, niece, nephew, granddaughter or grandson might almost die from meningitis, and you’ll be so grateful that they made it through and survived, even with a severe hearing loss, that the one dollar a day you paid through insurance will be the best investment you ever made.