Despite being the founder and CEO at Neurodiversity Media, I’ve rarely spoken up about my lived experience at an in-person public event, because I have terrible social anxiety about speaking up in Q&A sessions. Ironic because I can give talks offline and online about neurodiversity, but sticking to your lane breeds confidence. Going outside of that lane breeds anxiety. Or so I thought.
For International Women’s Day 2021, I chose to go to a local short film screening. The website blurb said the five-minute film was about a “27 year old young woman who has developed disability as a teenager and how she revisits her younger self in an attempt to determine what is important to her”.
OK creepy - a film that sounds like the story of my life, even with the correct age? The blurb continued: “The film is a meditation on the complexity of identity and the spurious nature of online relationships.”
Spurious nature of online relationships? I found solace in an online art community website called deviantART. The friendships I made online with adults and teenagers all around the world kept me going through high school. Many became my closest friends and taught me important life lessons about confidence in expressing my story. Most adults in “real life” emotionally invalidated me instead.
The screening had a Q&A session afterwards with the filmmaker. I registered ahead of time to go to the session, using my Neurodiversity Media email. Time to put on my “journalist hat” and get “the full story” behind the film.
I arrived at the film screening, which was held outdoors on a large screen. No spoilers, but I thought the film did a decent job portraying the dangers of social media metrics obsession at the expense of real-life relationships. Plus it was beautifully shot in my local area at places that I instantly recognised. I remembered shooting video around the same local area for a demonstration video about the Resource Library.
But as the credits rolled, I felt annoyed. Why did the film choose to have a disabled character portrayed with this problem, as opposed to any non-disabled social media influencer? A rare opportunity of having a disabled character as the lead protagonist on film was squandered on a cliche “social media obsession is bad for you” storyline.
Yes, disabled people are still people. But still, I had serious questions. I set off immediately to the Q&A session location, a small art space filled with artworks from high school students. The filmmaker, a thin slight woman with purple hair, Natalia, arrived with her interviewer (a representative from the local council hosting the event) a few minutes later.
The format was an initial conversation between the two of them before opening questions to the audience. After 10 minutes, the discussion turned towards representation of “disability”. The interviewer started out with a definition of “disability”. Disability, in contrast to the medical model, is about the challenges and limitations that the world puts on people who are disabled, she said.
Then Natalia, the filmmaker, answered one of my questions: did she have lived experience of disability in the first place? Yes, she did, although she didn’t elaborate on what type of disability.
Yes, she worked with people with disabilities and worked with people online throughout the film production process because of COVID-19. Yes, she said that disability is a wide spectrum of people with many different experiences. She could only speak from her lived experience, not from the lived experience of many other people.
Yes, she said people were too afraid to talk about disability, like saying anything wrong or offensive so they would remain silent instead which isn’t ideal too. Listening to people, asking them about what they need and being okay with not understanding at first and clarifying was important, she said.
Natalia was winning “Lived Experience Bingo” with what she was saying. I felt enormously relieved to know Natalia’s contributions were aligning with my thoughts in this area. Then Q&A kicked off, with the first couple of people complimenting Natalia for her excellent film and making good points about the vices of social media. I instantly cringed. Just as I feared - non-disabled people making a judgement without the context of other lived experiences. I needed to speak up.
But when? I didn’t want to go too early in case I hogged the discussion unfairly. But not too late either, or I would never get the opportunity to share my thoughts. Both situations have happened to me, the second situation far more often than the first.
And how? The audience Q&A was based on who spoke up first, instead of a sensible turn-taking mechanism like raising your hand and getting picked to speak. Autistic hell: having to make a tricky social judgement without rudely interrupting somebody or rambling because I had forgotten the succinct contribution I had prepared exhaustively in my head before speaking up. After a slight awkward pause when no other questions or contributions seemed forthcoming, I made my move.
“Natalia”, I said loudly, awkwardly clearing my throat. Sigh. Great start. Natalia swivelled on her seat to meet my eyes. “Thank you for making the film. I thought it was beautifully shot and really interesting. But I would like to share my thoughts from a disabled perspective. I’m autistic and have ADHD...”
I forgot to introduce my actual name, but I spoke about my lived experience and how social media can help disabled people tell their stories too. I sprinkled in liberal mentions of “just my perspective” and “it’s great that your film has helped to start this discussion”. Eye contact was ditched five seconds into my monologue. I had to pay full attention to my words which could cause great offence compared with the (relatively) trivial offence of not connecting with other people’s eyeballs when talking.
Far from being offended, Natalia acknowledged my points with gratitude and shared more about the importance of portraying different types of stories, including through her vehicle of film. Phew. My story was acknowledged. I have not been forcibly evicted from the room for disrupting the usual Q&A process with my mini-speech. Victory! Now time for me to get off my soapbox, but not without one last word.
“My concerns were coming from the perspective of running Neurodiversity Media where I see the media stereotype of autistic people being portrayed as tragedies being replaced by another media stereotype that we’re all IT geeks with untapped talent in the workplace. I mean, I’m a creative autistic woman.”
The actual last word went to a woman with Down Syndrome. A couple of tears slid down her face as she thanked Natalia for making the film and asked how she could also create films based on the theme of “identity” like Natalia had done with the film. Thank goodness another person with disability got to share their lived experience too, and have the final word in the discussion.
After the Q&A session, I was approached by two middle-aged Caucasian adults. “Thank you for sharing your lived experience. It was really thought-provoking to hear a different perspective on the film,” said one.
“Yes, I thought it was so interesting that you were annoyed about the film at first. That got me thinking about different reactions from others to this film,” said the other person.
I thanked them while chewing through a bunch of lollies to help me calm down after my nerve-wracking experience of speaking up. The resulting sugar rush to my brain was also mixed with a rush of gratitude that instead of judgement, I had understanding. I didn’t need the whole room. Just two people expressing their gratitude for a different perspective was enough.
Writing about the local screening was definitely out of the usual scope of work for the Resource Library. But Neurodiversity Media is about capturing lived experiences in various media formats to create empathy and understanding for neurodivergent people. For now, I was sharing other people’s lived experiences in journalistic text and visual forms.
But why stop at that? Why not leverage the power of all types of creative storytelling? In recent times, people have told me that reading my writing about lived experience stories has allowed them to understand how and what it must be like to be neurodivergent.
I recalled the opening words of the short film blurb, which mentioned how the protagonist “revisits her younger self in an attempt to determine what is important to her.” It hit me then, about what I’ve been missing at Neurodiversity Media for a while now, crushed by the responsibilities of making money and making a global business work with few resources.
I was missing my younger self who used to write without caring about what the social media stats or other people thought of that work. Her younger self was far braver in writing candidly about her life experience because she just wanted to connect with the world through her writing, the one mode of expression that saved her from being a gloomy statistic in the autism unemployment rate.
It’s not too late for me to recapture her spirit. Being neurodivergent usually comes with a permanent inner child. I just had to rediscover her under all the layers of painful experience and hard-won wisdom, without sacrificing the responsibilities and realities of adulthood.
Sometimes you need a reminder from your younger self about what really matters: the health and happiness of yourself and the people who care about you. Who would have thought a film would have triggered such an epiphany?
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