International Day of People with Disability 2017: reflections on the year that was
Today is my second IDPWD since receiving my autism diagnosis in April 2016 and with each year that passes, big changes happen — for better and for worse. I think it’s worth stopping for a moment to reflect on the last 12 months.
One year ago at IDPWD 2016 I gave my first keynote- I told my story to 50 or so of my then colleagues. I was terrified. I was up onstage in a former workplace telling the story of how I was bullied so badly for being different that I tried to take my own life at 15 and that was just my first attempt. Thankfully, it was well received and sparked many positive conversations about different brains in the workplace.
In March, I shared my story at a Case Manager Forum and discussed the ways in which autism can be supported in the workplace drawing on my positive experiences. I also attended the UN Women’s International Women’s Day Luncheon in Canberra and was lucky enough to meet one of my heroes, Tracey Spicer.
In August, I gave my first UX Australia talk on what it’s like to be autistic and design for people when you struggle to connect with them. There were approximately 350–400 people in the audience that afternoon when I told my story and shared hilarious examples of what it means to be autistic in terms people can actually relate to. I also talked about design opportunities that would actually add value to the lives of autistic adults — no more puzzles or communication apps please!! Overall my talk was very well received by the audience and I loved every minute of it.
In early September, I spoke at an AHRI Diversity Network Forum and shared the practical ins and outs of supporting disability in the workplace to a room of HR professionals.
In late September (on my 31st birthday) I spoke at the first and only AlterConf in Australia. I went down to Melbourne for a couple of days and wore a dress covered in unicorns over a hot pink tulle petticoat. I had an absolute blast surrounded by people who were all very different in their own ways and damn proud of it. They were the most authentic people I’d ever met. From the second I stepped off the elevator, it was like I’d found my tribe.
Every single time I gave one of these talks, I was approached afterwards by several audience members who either had family members on the spectrum that they were proudly supporting to be their authentic selves and people who were going through the diagnosis process. So far, members of the latter group have all been women in their 20s and 30s. There’s been a lot of tears and plenty of hugs to go around, but I think I’ve really helped some of these amazing women.
Parents of autistic kids and teens have emailed me asking for advice which I’ve given openly because there are so many parents who don’t listen to autistic adults and for whatever reason shut us out telling us we’re nothing like their child! Of course, we’re not because no two of us are exactly the same but that’s not what they mean when they say that.
Following on from my successful UX Australia talk, my friends at UX Mastery asked me to write an article digging deeper into some of the points I discussed. While I was writing it in late September, I realised what I had was more than an article. It was the beginnings of a book.
We were due to catch up in Wellington at UX New Zealand in mid October anyway, so I pitched my book idea to them and over pancakes and bacon under fairy lights and pinatas at the Thunderbird Cafe on Featherston, it became a reality! I am now writing a book! The book will dig deeper into my story as an autistic UX professional and will also share practical insights and ideas on how to design with and for autistic people. There are many autistic writers out there who don’t have a platform like this and I’m hoping that me writing this book will in some small way help normalise the idea of us being the experts on our own brains. We need to be heard and I’m proud to say I’m going to get that chance.
Also in October, I left a stable job at a large professional services firm to realise a lifelong dream and go work for myself. The timing seemed right and most importantly I felt ready to strike out on my own. My former colleagues and I are still in touch and people from right across the firm still email me and share interesting articles. It’s really nice that even though I’ve left, those relationships carry on.
In November I attended Remarkable’s Enabled by Design-Athon in Sydney as a mentor. I’d actually never participated in a hackathon before- let alone mentored at one! It was an amazing experience! It was such an incredible thing to witness and be a part of. I’ve been invited back to the next one and may even be giving a talk.
This month, I’m also proud to say I’m appearing in UXmas! UXmas is an advent calendar publication for UX professionals that delivers a daily package of UX goodness to your inbox. I’ve been involved since 2014 and this year’s submission is unlike anything you’ve ever seen from me! I can’t tell you when my day is (shhhhh it’s a secret), but you won’t have to wait much longer…
There’s been a lot of highlights this year but sadly there’s a dark side that needs to be called out. Despite the achievements, I have had a really tough year personally. This was the year that I really started to understand the true meaning and impact of ableism and discrimination. I was born autistic, so it’s always been there but somehow the context of a formal diagnosis changed everything for me. Pre diagnosis whenever it happened to other people, I’m ashamed to say I brushed past it- ignored it even. I distanced myself from it and twirled around in ignorance. Knowing that my neurodiversity was the driver for bad behaviour was a sickening thing to wake up to. When it happens to you, it changes you but I should have woken up a lot sooner.
Colleagues and the global UX community have always been supportive but strangers, neighbours, medical professionals, airlines, retailers, hospitality staff and other service providers have a lot to answer for! Hate mail in my inbox and my actual mailbox- yep that would be the one in the front yard! Along with trolling, cyber bullying and that time I stood up for my rights as a disabled person and was accused of ‘hitching my professional bonafides’ to ‘whatever bandwagon’- So my disability is a bandwagon? Lovely.
Eugenics is another sore spot that I used to coast on past pre diagnosis but just this week left me crying tears of rage as more and more excerpts from the garbage fire at the centre of the #BoycottToSiri movement on Twitter surfaced. I am disgusted to say that in 2017, there is a book in which a mother outlines the abuse she inflicts on her autistic son as some kind of twisted excuse for a memoir. A book that people are actually buying and in some stores has made the top 100! Then, that same mother thought it was perfectly acceptable to turn that abuse towards autistic adults on social media who called for her to be held accountable for her hateful narrative! The messages and themes of that book scare the crap out of me. There are people out there who will read it and believe that autistic people are incapable of being good, caring parents and that we should indeed be sterilised. I’m not going to share those excerpts here because others have beaten me to the punch and the author already has a massive platform but look up the hashtag and see for yourself.
My mental health challenges and the constant battle that is imposter syndrome planted themselves firmly in the front seat and drove my wellbeing off a cliff. My confidence and self-worth certainly took a beating this year but with the help of the global UX community and the adult autistic community on Twitter, I’ve started to claw back my power. I’m a fierce advocate for myself and my neuro siblings and I’m a strong outspoken woman with no time for bullshit.
Despite the struggles, the future is looking pretty damn bright. I’ve got multiple speaking engagements already on the books for 2018, I designed my own job and it’s actually working and I’ve got a book coming out next year!
I have difficult days, weeks and months, but I’m constantly moving forward and growing into the kind of person I might actually be proud of one day. Here’s to another year of being an unapologetically loud diversity advocate on a mission to change the world!
