Literary event with debut author and disability activist Carly Findlay
Content warning: sex, language, cyberbullying
Over the weekend I was very excited to go to see Carly Findlay speak about her new book “Say Hello” about living with a chronic skin condition called ichthyosis at an event organised by Muse which had to be held at the Street Theatre, tickets were selling so fast. Findlay was interviewed by writer Ginger Gorman, and they both arrived on stage wearing pyjamas!
Left: Ginger Gorman Right: Carly Findlay
Gorman introduced the discussion by saying that she and Findlay were book buddies, and their new books had been photographed side by side around the country because they were generally in the same section (and, I presume, because Findlay comes right before Gorman!). They explained that the reason they were wearing pyjamas was because they first time they met in person, Findlay was feeling sore and advised Gorman that she would be wearing pyjamas at their catch up in a fancy hotel. Gorman apparently turned up wearing pyjamas as well, and the friendship began.
Findlay explained that she actually wears pyjamas to work most days because she now works a lot from home. She said that people with disability should be allowed to work in comfort. She said that when she previously worked in government she had to wear conservative clothing but now she dresses for comfort.
Findlay and Gorman then discussed the issue of accessibility, and the fear that many people with disability have to speak up for their needs. Findlay reflected on a comment she once made to an artist about how it is difficult to attend her performances because they are often on so late. The artist told her that they were on too late for her as well given her illness. Findlay asked her why she didn’t ask for an earlier time slot, and the artist said it was because she didn’t know she could.
Gorman asked Findlay whose responsibility is it to ask about accessibility and adjustments, and Findlay said it was everyone’s. She said that everyone needs to make sure that it’s an environment where people are comfortable asking, especially people who do not look like they have a disability.
Gorman then asked Findlay about her appearance activism and told a story about how her own daughter had seen a little person and had asked questions, so they approached the person to ask questions. Findlay said that she is constantly asked in public about her appearance, and that parents frequently make up stories about her (e.g. that she is sunburned) and take their children up to speak to her. Findlay said that she doesn’t want to educate people all the time, and that it is not your right to know how someone became disabled. She said, “Our bodies are not up for public discussion” and noted that a lot of people may simply have been born that way. She said that despite this, strangers often demand to know and feel that they have a right to know and educate their children. However, often this comes across incredibly insensitively.
Gorman asked Findlay about some of the things she has been asked by strangers, and Findlay described one incident when someone asked her how long her life span is. She said, “I’m not a budgie”. Findlay said that people often want to ask about sex and whether she can have sex. She said that someone once asked the late activist Stella Young whether she had a vagina, a question that you would never ask someone without a visible disability. Gorman noted that the chapter on sex in Findlay’s book is basically “fuck off”. If you have questions that you really want to ask, I really recommend that you watch Findlay’s episode of “You Can’t Ask That” on Facial Difference.
On the topic of inappropriate questions, Gorman turned to an incident that became notorious for how insensitively Findlay had been treated. Findlay explained that she had been on many radio interviews where she had awkwardly been asked to describe herself on air (something she noted that people without a facial difference would never be asked to do) and had been a regular guest on radio in relation to her work in the Melbourne arts scene. She was invited to do an interview with ABC Mornings host John Faine to discuss microaggressions. She said that she was encouraged to do the interview because of the exposure, but noticed when she arrived it was already a bit strange.
She said that he seemed tetchy about her moving a sit/stand desk down so she could sit, there was no briefing and he didn’t seem to know who she was. She said that he described her as looking like a burns victim and made the infamous comment about her face on Halloween. She said that even when he asked her whether she could have sex and said that she should be grateful for people praying for her, she felt that she couldn’t walk out because it was live radio. She said even callers who rang in said his questions were inappropriate and afterwards she thought it was going to ruin her career, but it ended up becoming a trending topic. Findlay has written about the experience herself, so you can read about it here.
Gorman then asked Findlay about another issue that went viral: the Reddit attack of 2013. Findlay said that she noticed something strange was going on when after her boyfriend had stayed over and they went to see a band, and her website started getting a much higher than average number of hits. It turned out that a photo had been posted of her on the subreddit /r/wtf and had received a huge number of hate speech comments. Findlay read out the response she wrote to huge applause from the audience, and then said that after she posted it it was upvoted thousands of times. The response was so upvoted that it floated to the top of the thread, prompting a (backhanded) apology from the original poster and interview requests from CNN. Findlay reflected that the experience was not good but the exposure was excellent and she won the internet.
The next question Gorman put to Findlay was about the support she had as a child. Findlay said that she was really lucky because her parents (including her mother who was there in the audience) treated like any other child. She said that they made the choice not to engage with the media, and when she did as an adult, that was her choice to make. She said that her parents taught her respect and worthiness. She said that at school in a small country town, there was another girl with a different disability, but that she didn’t make a connection between their experiences. She said that she didn’t understand the social model of disability then and that it is society that makes barriers.
Findlay went on to talk about her school experience, and said that children excluded her. She said that her mother would make her the most beautiful, elaborate lunches to show her how much she loved her, but Findlay said, heartbreakingly, that she didn’t understand why her mother loved her so much when nobody else seemed to. She said that she didn’t have a friend, so she didn’t know how to be a good friend. However, she said that everything changed when she got a job at Kmart. She said that she made friends and then afterwards went to university and was treated like everyone else. Findlay said working at Kmart was a turning point in her life.
Gorman’s last question for Findlay was about identifying as having a disability. Findlay said that she first started identifying as having a disability after volunteering and getting involved in the community, and having to identify became about asking for assistance and accessibility. Findlay talked about the importance of belonging to a community, but said that she had also experienced lateral violence. She said that because there are so few opportunities created for people with disability, when someone is successful, people think that that means that they won’t get a break. However, she said actually it opens up more opportunities. Findlay said that she has been told that she had to choose between being mainstream and being an activist, but that you can’t grow only talking to the same people. Gorman reframed this as the fear of people taking up too much space and noted that it’s not a pie. Findlay said that she does like pie.
There were quite a few interesting audience questions which I’ll summarise:
- a request for a verbal description of the stage (which Findlay did very eloquently),
- how Findlay deals with intrusive questions and comments like “I’d kill myself if I had what you have” (Findlay gave some examples of when managers and colleagues had and had not been supportive, and said that unfortunately she couldn’t tell people offering her stem cell treatment to fuck off because of the code of conduct; Findlay gave some advice about speaking out to HR, supervisors and supervisor’s supervisors),
- what the most ridiculous thing Findlay has ever been asked was (has she been licking lollies? facial peel? microdermabrasion?)
- what books was Findlay inspired by as a child (Findlay said that she got books as presents while she was in hospital as a child, and they were a lifeline),
- what’s next?
Findlay said that she is very tired and is going to take a long rest from her book tour. However she said that submissions are open for her next project, “Growing Up Disabled in Australia” and she’s hoping to do a picture book, like a junior version of “Say Hello”. Gorman said that it doesn’t sound like much of a rest, and Findlay finished off the event by joking that she needs her mum to take away her devices.
5 responses to “Carly Findlay – Say Hello”
I saw this advertised, and was interested, but just couldn’t get there. I love the wearing pyjamas, and I love the point about being comfortable in the workplace. One of the things I most loved (well not most because I loved the work itself) about working in cultural institutions is that I never really had to dress for success! I could always dress comfortably, and that’s critical for me because I suffer from chronic eczema – nothing like ichthyosis, but at its uncontrolled worst it’s unsightly and disfiguring not to mention horribly/painfully itchy. I manage it many ways – one of which is wearing comfortable, loose, breathable clothing. Definitely no panty-hose or tights!
Oh dear, all this is to say that this event would have been so meaningful for me to attend. I knew that, but couldn’t, so have greatly enjoyed your write up. My, it’s unbelievable what people think they can ask. I love that point that it’s not her job to educate people. “Do you have a vagina” to Stella. Really!!?
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Lots of people in my family have eczema and Sue, it is simply the worst. I’m sorry that you have to deal with it but I’m so glad that you’ve found lovely clothing to feel comfy in! Carly was great, let me know if you want to borrow her book (in case you don’t have a copy already!) after I read it! And I know, there needs to be a complete social overhaul on unsolicited comments
Thanks Angharad… That’s nice that you understand, though I’m sorry you K n ow people with it. It is a blight that controls you life… Everything I do, eat, wear is within the context of managing it.
And thanks for the offer of the book. I’d love to read it, but am overwhelmed right now. However let me know when you and anyone you know had finished it!!
And yes re comments. Pretty unbelievable how people behave.
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