What it means to me to have Dylan Alcott as Australian of the Year
I welled up with the news that Dylan Alcott had been named Australian of the Year and a tear or two escaped listening to his acceptance speech. It is the first time in the awards history that a person with a disability has been given the honour. In the 63 years since the award’s inception, not one disabled person has been recognised for their contribution to the country. Why had it taken so long for a person living with a disability to be acknowledged as being worthy of the award? I know the answer.
Just like Dylan Alcott spoke about in his acceptance speech, I too had a difficult time in school. I hated the fact that I was ‘different’. Kids most likely didn’t understand that having a limp and a wonky eye was ok, instead they chose to punish me for my differences. I also remember, seeing the graphic TAC ads and wondering why they were showing people in hospital crying. Why was being in a wheelchair or attending rehab so awful? I spent a long-time in hospital and had been in wheelchairs and I knew that it was ok. Maybe not the most fun thing for a 10-year-old but it was still ok. It wasn’t just Dylan and me seeing those ads, it was many young and vulnerable people. While the message about the consequences of drink driving or speeding was a good message and it hit home in a graphic way, it was the depiction of disability as something to pity and avoid at all costs. Nobody wanted to be in hospital for the rest of their lives, did they?
As I got older, I thought that people would start to see me for the person I am and not just my disability. Going out with friends to bars or clubs, there would inevitably be one idiot who would ask what was wrong with me and why didn’t I just fix it. It wasn’t just a few drunks on a Saturday night either. I’m regularly asked by people in my day-to-day life ‘what’s wrong with me’, or why I use my walking stick. Sometimes, if I’m in the mood I might make a joke and say it was an old footy injury. Recently, I’ve had several people, particularly in shops make loud remarks about how fabulous my walking stick is (it is fabulous). Whether this is an attempt at conversation, or they think they’ve got a better chance of a sale, I don’t know. It may also be good natured and well-intended. With all of that in mind I smile and say something about how great it is and ‘well if you’ve got have one it might as well be a good one’. Occasionally, when asked what is wrong with me, I’ll tell them I have rheumatoid arthritis. Oh, they say – my grandma has that. I nod and wait for the next comment, which is inevitably, what grandma did to fix her arthritis. Not all arthritis is the same by the way. Osteoarthritis is common in older people while Rheumatoid is an autoimmune disease. Internally, I am groaning and hoping my face does not give me away. Why after 40 years of living in this body, do I still have to smile and nod at people commenting on my body when they don’t have a medical degree? Why? Why do people think it’s ok to ask a stranger about their medical history and then offer up a cure or remedy? Sorry mate but having a cold shower twice a day does not cure rheumatoid arthritis.
While the national employment rate for working-age able-bodied people has remained reasonably steady at around 80%, the employment rate for working-age disabled people is around half that *. I can understand why this is. Fronting up for a job interview with a walking stick can be confronting. I’ve seen potential employers looking perplexed about what they are going to do with me. Even when I was successful, I was told that I didn’t have quite the right ‘look’. There was also the memorable time when I was sent by a recruiter to an office with steep stairs which would have been difficult once a day but even more so when it had to be done as part of the job. This happened to me twice, for two separate jobs – with the same recruiter. I’d explained about stairs being an issue and frankly it’s obvious there might be an issue when a client walks into your office with a walking stick. But the recruiter hadn’t taken the time to ask one question. One question was all it would have taken to save me the embarrassment of telling a potential employer that I couldn’t even do the interview as there was no way I was getting up two flights of stairs with no handrail. While I’m only a small case study, it is obvious that there are barriers to employment for disabled people. As much as some government ministers might like the public to think it, no one wants to be on the pension all their lives. Disabled people want the opportunity to participate in the workforce just like everybody else. It should and can be possible. With diversity and inclusion major talking points for big companies – disability must be part of that conversation too. I am so hopeful that having Dylan Alcott speaking about disability employment in front of the nation on Tuesday night will spark new understanding from employers that disabled people are here and waiting to get into jobs.
When I was little, I wanted to be Tina Turner. I wanted to be Tina Turner not just for the voice, outfits or moves but because she was so energetic and confident. There were never any girls like me on the telly. The person I saw on television that I related to the most was Eve van Grofhorst. Eve was the first person in Australia to be diagnosed with HIV after receiving a contaminated blood transfusion at the height of the AIDS epidemic. With AIDS being new and not understood well, Eve and her family were hounded out of their NSW home as fears that Eve might infect children at her kinder became hysterical. The hysteria became so bad, the family moved to New Zealand where they were warmly welcomed. What I remember most about that time is that I felt like Eve did. I remember thinking I looked a little like her - I was also born prematurely and I could see myself in her. The kids at school used my apparent AIDS diagnosis as another form of bullying. This is why representation matters. No little girl should have to feel like an outcast through no fault of her own.
What Dylan Alcott is doing just by being visible is making disability a normal part of life. He is showing us that it is more than possible to live an enriched, happy life and have a disability. Sure, you might have your bad days but you’re not going to spend the rest of your life crying at physio or hospital ward. I hope too that having him in the public space will open more doors for people like me and will maybe stop the ‘meaning wellers’ from telling me about grandma’s cure-all. Like Grace Tame has done for survivors of childhood sexual abuse, Dylan Alcott will be able to start a conversation about what living with disability is like and how others can be an ally rather than a hindrance.
*Employment statistics can be found in the Australian Institute of Health and Welfare website
Susy walking in the Dandenong Ranges with her husband