Carly Findlay who has a rare genetic condition that makes her skin red with photographer Rick Guidotti. Photo: Simon Schluter
Last Thursday, I was invited to a multiple sclerosis conference dinner in Melbourne’s CBD. As a disability campaigner, I was due to give a keynote speech the following day about my skin condition and how having a visible difference has made me more resilient.
At the end of the night, the CEO of MS Australia insisted I take a taxi to ensure I get home safely. When the taxi arrived, the driver fiddled with the meter for a minute before turning around and asking, "what's that smell?"
"What smell?" I asked him. He turned on the light and had a better look at me. (Because that's what happens when you have a visible difference. People look twice, to see if they saw it right the first time.)
"What's on your face?" he asked. "You smell".
I was born with a serious and rare skin condition called Ichthyosis. It means scaly red skin. My face looks sunburnt and I use Vaseline to keep it moist. There is no odour unless I'm suffering from a serious infection, which is rare.
I asked the driver if he wanted me out of his taxi. He said no, but he's worried that my face and smell would damage his car. We had not driven anywhere.
I got out straight away. I did not feel safe. Before shutting the car door I looked him the eye and said "f*ck you".
I returned to the hotel lobby, asked for another taxi, told them briefly what happened, and burst into tears. The hotel concierge tracked the driver's details from the booking they made and reported the incident on my behalf. I lodged a report, too.
I'm a resilient person. But I shouldn’t have to be resilient all the time. I shouldn’t have to put up with these micro attacks or rise above them or let them go. I should have the right to get on with my day or night without strangers intruding on my privacy, questioning my appearance and making judgments at first sight.
While I have met some lovely taxi drivers, this is the third time since October last year that I have been questioned about my skin by a taxi driver.
I was told not to touch the seats of a taxi as I was driven home from the airport in October. The driver was scared my skin would ruin his seats - he told me he was very concerned for future passengers. But what about the current passenger he had a duty of care to get home safely? What about the Disability Discrimination Act and the Victorian Taxi Directorate's Code of Conduct including their commitment to people with disabilities? Strangely, he didn’t believe me when I said I live with this condition every day.
After a concert in May, a friend and I shared a taxi home. Before I got in, the driver asked my friend how much I'd had to drink. I had three drinks very early that night and was clearly not drunk or disruptive. I just wanted to get home at 1.30 am. He said I looked drunk because my face looked flushed, like some of his previous drunk passengers. Was it really my role as a paying passenger to justify the way I look or how much I've had to drink when I wasn’t behaving drunkenly?
I acknowledge that taxi drivers receive horrific physical and verbal abuse and damage to their cars. But I also think they should treat each customer on an individual and fair basis.
I believe the taxi industry needs mandatory training about diversity, visible difference disability, tolerance, respect and social etiquette. I have been with disabled friends who have been refused a ride because of their disability. Drivers assume they're drunk, or won't stop for a wheelchair. Prominent indigenous Australians have been allegedly refused a taxi because of the colour of their skin. A friend told me that a taxi driver refused her a short trip when she was pregnant, telling her she was fat and needed the walk. This treatment from employees within a necessary service industry is not acceptable.
My run-in with the taxi driver may have lasted no longer than five minutes, but it is exactly the kind of everyday aggression that needs to be brought to light. I have written about the experience on my blog, which has since been shared on social media thousands of times. People were outraged, and very supportive. A luxury taxi company has given me credit to ensure my future trips are safe. However, despite tweeting 13Cabs and The Victorian Taxi Commission, I have not received a public response.
I will continue to be vocal about my experience because I don't want other people with disabilities to be subjected to the same treatment. Dealing with verbally abusive situations within the confines of a car can be frightening. Everyone has the right to get home safely - without physical or verbal assault.
Carly Findlay is a writer, speaker, community TV presenter and appearance activist. She blogs at Carlyfindlay.blogspot.com.