The 1981 Telethon raised $5 million for New Zealand’s disabled community. But on the night, we were the objects.

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Original illustrations by Pinky Fang

Last month’s vaxathon brought with it a frisson of distaste and some uncomfortable memories. While the vaxathon had a different objective to the original Telethons, the publicity around it featured many reminiscences about Telethons of the past: like the vaxathon, they were a great excuse for a party, for celebs to show off, and a general knees up for a good cause. Sounds similar so far.

It’s been 40 years since the United Nations International Year of the Disabled, the same year that a Telethon on June 27 raised $5 million here in New Zealand for disability causes. That year was a busy year for me. I marched against the Springbok tour, took women’s studies papers at Vic Uni, and was on the local UN International Year of Disabled People committee. Telethon was the culmination of a series of fundraising activities all around the country. Disabled people did our bit too. But on the night, we were the objects. Gratitude was expected. The celebs’ patronising attitudes towards disabled people who appeared onscreen made me cringe.

It was a deeply politicising year for me. In my early 30s I was “coming out” as a political disabled person.

That journey began when I was growing up in the 1950s and 60s. I don’t know why I had an instinct for injustice – perhaps it was because I always knew I was different from others.

In those days attitudes towards disabled people were in some ways different than they are now – but in other ways not different at all. In the ’50s there were lots of things you didn’t talk about, and disability was one of them. If you didn’t conform to the rest of the world you could be brutally shoved aside at worst. At best, you would be tolerated as long as you knew your place, weren’t too different, and didn’t demand anything too out of the ordinary. You shut up and got on with it as best you could, against very low expectations.

Those “handicapped” people who couldn’t conform might be sent away from their homes and communities to various institutions for whichever impairment they had. Some mothers were told to “put their child away”, forget about them and have another baby. Thankfully I dodged the institutional bullet. Other blind and vision-impaired children were sent off to Homai in Auckland, some aged as young as three. I had the same negative attitudes as my elders, both towards myself and other disabled people. We didn’t talk about disability unless we absolutely had to.

If we did, it was in a medical context. You were expected to do as you were told, since you were a medical case. As a child I was totally in awe of my ophthalmologist, who never spoke to me except to tell me what to do. Instead, he talked only to my mum, referring to me in the third person. It was always about my eyes, never about how and who I might be in the world.

It was also the time of the polio epidemics. We lined up for the first polio shots (no lollipops for us.) The “vaccine hesitant” of today clearly don’t know the real and terrible fear of polio in that era.

For everyone then, it was sink or swim, with little support for struggling parents beyond family or close friends. Technology was primitive compared to today’s assistive tech. We, the disabled, the “handicapped”, those born “foreign to our parents”, as Andrew Solomon describes us in his book Far from the Tree, were invisible.

I was fortunate in many ways; I mostly liked school and I loved learning. My beloved new-entrants teacher gave me the gift of literacy. I was curious about the world and, aged about eight, wrote a short essay in opposition to capital punishment. My political journey had begun.

I hated maths, unable to read much of the numbers even with my thick magnifier, so I’m not good at fractions or decimal points to this day. I had to “catch up” while the girls sewed and boys pulled old phones to bits. I felt punished for something beyond my control.

Boarding school came next. I still loved learning, despite low expectations. I was homesick, bullied and unhappy, but obstinate and determined; passive resistance was my not-so-secret weapon. The library became my refuge. I read everything with big enough print. After passing school certificate – which I had to fight to be allowed to sit – I set my sights on university; I would be the first in my family to go. Life improved after that but I refused to return as a boarder in the seventh form, issuing my parents with an ultimatum: I would return as a day student or not at all. Again I won.

I enjoyed that final year, even cemented some friendships. My world was expanding. I attended a seminar by professor Jim Flynn about the American political process and US black civil rights. It didn’t occur to me then that such principles could be applied to disability. Later he was one of my political science lecturers, along with other influential people such as Austin Mitchell, who aroused my interest in politics after I saw him on TV.

At university I threw myself into everything I could. Once again there was no support for, or interest in, the problems of disabled students. No concessions were made, except for extra time for exams, as I had at school. The library was almost impossible to navigate. I was in awe of the lofty librarians whose only role seemed to be to shut us up if we made too much noise, not to help. Print size and quality was still a nightmare.

My degree in English and political science was mediocre, but I learned a lot of other things. I nearly didn’t pass a final paper because I boycotted lectures after one of the lecturers told a male student he could “have” any of the very few girls in the class. I had found the women’s movement.

I marched against the Vietnam war, but I had to give up my activism when I finally began my career in journalism. It was a time full employment and my contemporaries had little trouble finding work of their choice. I, on the other hand, tried for 40 jobs before I got one, in Wellington. It was not a success. Once again, reading was really difficult. I retreated to Christchurch, feeling deeply demoralised.

Eventually I got a job writing captions on The Press. There were still problems. We still used zinc plates in the negative and at one point I got into trouble for mixing up racehorses. But I was where I wanted to be. I gravitated downstairs to the newsroom where two other disabled journalists were supportive, as were some other staff. I learned so much. Here too, in a largely male newsroom, no one had even heard of sexual harassment, let alone that it was an issue.

Several women – and there were very few of us – challenged the male pub culture by visiting the public bar, the bastion of privilege that our male colleagues frequented. Of course we were told to leave, but not until we had made our point about the inequality of the rules. Women were expected to drink with male escorts in dreary lounge bars where prices were much higher.

Once again, though, I had to fit. There were still few accommodations and although I loved the work, I wasn’t fast or adaptable enough for some, eventually having to accept work under the going rate for a very junior staffer. That was the kind of arrangement that was supposed to disappear with the abolition of sheltered workshops. Years later I was delighted to front up to a select committee as a human rights commissioner to support their abolition.

I was beginning to uncover my disability identity, although as a journalist I couldn’t write about such things. Some subjects were still taboo, like the women’s refuge and rape crisis movements. In journalism, disability issues were restricted to medicine or charity.

During my OE in the ’70s, I found activists and thinkers who posited the idea that disability was not something to be ashamed of or hidden. At the time a social model was being developed by UK activists and academics that separated the impairment (in my case, my low vision) from the disabling social environment I struggled with.

This had a profound effect on me and my world. I could see myself, my experience and that of other disabled people in a completely different way. It was a deep revelation. The outsider could come home to her tribe.

For many years I had not known who or how to be in the world. I always felt inferior. This new way of seeing impairment and disability freed me from the burden of personal responsibility for many of the negative things that happened to me: for the discrimination, the unfairness, the sometimes casual cruelty. They were not my fault. I could be a whole person, free to be an activist from a position of strength. I could contemplate motherhood knowing that even if my child had the same impairment as me, they could have a good life.

While the social model has limits – it can’t account for chronic pain or my inability to recognise people I pass in the street, for example – it provides a platform for change that has enabled disabled people to demand dignity, respect and the expectation of autonomy and agency.

Which brings me back to the Telethon of 1981. Of course it did some good. It set up the Disabled Persons Assembly, which began as an umbrella advocacy organisation for disabled people, their own organisations and disability service providers, and has evolved into an organisation owned and operated by disabled people. It established the Teletext service which worked well until superseded by newer technology. And it funded many community projects.

But the price was high. I can’t help thinking that our local Lions Club could have simply built the ramp for the community house instead of playing on the fire engine all weekend, waiting for the donations to go through the Telethon application process. At least we would have been treated with some dignity.