There is a hashtag – and a movement of sorts – going around the autistic community at the moment called #TakeTheMaskOff. It is based in the knowledge that ‘masking’ for autistic people (ie being less ourselves, less noticeably ‘autistic’ in our expression, when around others and in situations like school or work or relationships with neurotypicals) is damaging to our mental health, invalidates us and eats away at our sense of who we are. I completely agree with these concerns. Masking takes a huge hit to our identity and psyche but even so, many of is do it. With all the significant negatives it entails, masking is seen by many of us as less traumatic than the judgement and prejudice we know from experience that we will experience as autistics in the wider world – otherwise why would we do it?
I long for a world we we can actually feel comfortable being our wonderful autistic selves without fear of bullying, discrimination, unemployment, isolation etc. A world with no perceived need to mask our autistic expression is basically the end outcome I intend for my advocacy to contribute to bringing about.
I had some interesting thoughts around my own advocacy work, identity and masking. I spent from ages 11 to about 40 masking, trying to be ‘acceptable’ to others and squash down my identity and how I wanted to express myself. It took a huge toll. It demonstrated my lack of value for myself, my fear that nobody would like such a ‘weird’ person as myself. This fear came form very real personal experience of bullying and being victimised. Thankfully I am now out loud and proud autistic, brightly coloured and big and bold. I wear lots of colourful clothes and jewellery, have several coloured wigs and other essentially ‘me’ accessories. I give keynotes in rainbow boots and cat t-shirts. I laugh a lot and am one of those extroverted types who seem a bit less common in autistic circles. I admin my cat’s Facebook page.
I worry about my expression on occasion. Sometimes I feel like everyone else is doing ‘serious’ advocacy and I’m just getting around in rainbow wigs and things and not really doing much to help anyone. I was featured in an article summing up an autism conference that I was a speaker at a few years ago. When the journalist wrote about all the other speakers, they mentioned the topic of their presentations and some key points of their message. However, when they got to me they had a picture of me, evidently delighted to be on stage with purple hair. The information readers got about my talk was this picture and the text ‘And Jeanette Purkis gave a very entertaining talk.’ They didn’t even say what I was speaking about.
This is difficult. I don’t want to be known for the form not the content but my colourfulness and extroversion is not an act or gimmick. It is me being me. I discovered a few years ago that for me at least, life looks better in shiny, bright and sparkly. My Autistic Pride is bound up in my ability to outwardly express myself the way I choose. I wear rainbow and sparkly things to my public service job, I dress up at home when the only person who will see me is Mfr Kitty and I suspect he doesn’t care what I look like as long as I provide car food and cuddles. Why do I do this? Well mostly because it makes me really happy. I think that my style is the opposite of a mask. I am not covering up myself and hoping no bigoted ableists will be horrible to me. I am expressing myself with pride and celebration. It has taken me a long time to realise this. I used to think that maybe I don’t take my role as an advocate seriously but I suppose the opposite is true. The other lovely realisation I have had is that my advocacy work introduced me to a lot of other autistic people and our community. It also introduced me to a lot of new thinking and views on empowering autistic people to be our true and so often incredibly thoughtful, kind and beautiful selves. Through this I felt that I was being supported and encouraged to be my true ‘me’. So the autistic community and my advocacy work have helped me to take the mask off and I hope that I am reciprocating that for others through my work. That is a great thing, a great strength.
And while most of the time I am not wearing the mask, I still do it on occasion, not intentionally and often not consciously but it happens. The forces at play in society and in our individual lives that drive us to mask are very real and can be very dangerous. Taking off the mask is a key part of loving and valuing ourselves and having the self-esteem and confidence to be who we are, seeing ourselves as we are – valuable, worthy, legitimate just as we are. I am glad that many autistic advocates and activists are focussing on this. We have the right to be ourselves.