5 lessons I learnt from Carly Findlay’s “Say Hello”

In January I attended a much-anticipated book launch held at the wheeler centre in Melbourne’s CBD. The book launch was for “Say Hello” – Carly Findlay’s new memoir and manifesto. For those of you who haven’t read some of my previous posts and are unfamiliar (if you are, then I suggest you get cracking on looking her up ASAP!), Carly Findlay is an award-winning writer and appearance activist. She is also one of my heroes.

If you have read my previous posts you’ll know about the story of when I first met Carly and how utterly star struck I was; so much so that I had forgotten to get a picture with her. I’d been looking forward to the book launch ever since she announced it at that first event. Of course, the universe seems to think that whenever I meet Carly, at least one thing has to go wrong. I was twenty minutes late to the event (taxis, can’t rely on them), and missed almost the whole first half of her interview segment with Bob Evans. I had to sneak in at the back but thankfully, despite the room being packed, there were screens hanging from the ceiling so at least I could see. What I saw of the interview was fantastic of course. Carly is a terrific speaker, if you didn’t know. Definitely made us laugh more than once with her jokes and funny anecdotes. After the Q and A sesh, people began mingling, snacking, drinking and lining up for photos. It’s safe to say, I got my photo in the end. Second times a charm!

Meeting somebody you admire or look up to is exciting but when that someone is actually warm and friendly, it makes it all the more special. Carly greeted me by name and threw an arm around me. People sometimes act awkward and don’t know whether to hug me when they see me. I think Carly might know what that feels like too. It was nice to have a hug even if it was fleeting. She remembered my story about forgetting to get a photo with her because immediately she was ready to get one; I believe she said something along the lines of “lets get that photo this time”. Thank you, Carly.

But enough of me gushing over Carly Findlay. I think it should be noted that I don’t consider Carly a hero for the same reasons a lot of people view disabled people as heroes. I don’t think Carly is brave or outstanding for simply waking up in the morning and remembering her name. Even I know how frustrating the glorification of disabled people is. I, with absolutely no accolades or great achievements to my name other than a secondary education, have already been deemed an “inspiration” on many occasions and it makes me want to scream. What I admire about Carly is firstly she’s a terrific writer. I too hope to be a terrific writer (and I mean really terrific). Secondly, Carly’s activism is about using her experiences to educate the world. To share stories not for the sake of “inspiration porn” or to make you feel better about your life, or to make you tear up and share ridiculous quotes on social media like; the only disability is bad attitude. It’s not about inspiration, it’s about education and again that is something that I hope to do in my lifetime, not just for disability but for many different areas of activism.

With that said, I would like to share with you 5 lessons that Carly Findlay has taught me through her activism and through reading her book “Say Hello” – which, btw, I read in TWO DAYS because it was so good.

Language matters

I have a confession to make and I’m not proud of it. In the past I have been guilty of using ableist language. Most of the time I had no Idea I was doing it. I’m not blaming anybody else, but I do think it shows just how deeply ingrained ableist language is in our vocabularies that not even I, a woman with a disability of almost 20 years, realised the language I was using was offensive to my own community; it was just “normal”. I’m ashamed to say that a month ago I released a blog post where I used the ‘r’-word in a recount of my experiences of having a facial difference. I’m disappointed that nobody brought it to my attention though I’m more disappointed in myself.

I would now like to formally retract the use of that word and apologise for any offence. I vow to be more careful in future.

It is not okay to ignore ableist language, in the same way it is not okay to ignore sexist language. Ableist language perpetuates ableism and ableism is discrimination of disabled people. In all honesty, I don’t agree with absolutely everything that Carly believes (for example; I prefer not to identify as a “disabled woman” but rather a “woman with a disability” for reasons I’ll leave for another post altogether). However, I do firmly agree that ableist language should not be tolerated because language matters and words can be extremely harmful.

Disability is a feminist issue

This was the title of my last post (go have a read, I worked really hard on that one). It came about shortly after reading Carly’s book and I discovered the word “intersectionality”. This sparked an array of google searches and led to my mind being blown. I saw my two-worlds colliding right before my eyes; disability and feminism. Suddenly realisations dawned on me and I was thoroughly enlightened. Here I was, just getting into learning about feminism (in isolation) and when I made the connection to my disability, I realised why it was so important to me and that I was not alone. My blog post goes into everything I’ve learnt (so far), but basically when we discuss feminism and women’s issues it is imperative that we don’t forget the voices of minority groups within the women’s movement. Women with disability are women. They’re experiences might be different, but they are also much the same. Having a disability can compound the issues covered by feminism even further (see statistic of sexual assault on intellectually disabled women). What we need to do is make feminism accessible for the disabled community and to really listen to the voices of disabled women if we are going to fight for real equality.

I ain’t fee, honey bee!

Another post I wrote last month which came about in the wake of finishing Carly’s book was all about the dire unemployment situation for people with disabilities. Another problem related to disability and employment is that many people with disabilities are asked to work for free. OOF, this will not fly! In all seriousness, the amount you pay somebody for their expertise and experience is indicative of the amount you think that person is worth. A disability does not affect the qualifications or experience that a person has. Therefore, in a situation where a person is asked to provide their time and skills towards a project that will A. earn you or your company money and B. is paying other able-bodied staff, then you absolutely should be paying a person you are employing who has a disability (I don’t need to remind you at the same rate for the same work). Also, if you are a person with a disability, then you should not be accepting anything less!

Just another thing; the stories and experiences (themselves) of a person living with a disability, are valuable. It’s important that if you do decide to share your story with the public, make sure that you research the platform of the journalist who reached out to you and be absolutely certain they are reputable and will treat your story with the utmost of care and dignity. Carly has a fantastic list in her book of all the questions you should consider before saying yes to an offer by a journalist. However, her best advice is to share your story on your own terms. Share it yourself on your own platform however you wish to do it – whether that’s writing a blog or shooting YouTube videos. This is one of the first lessons I learnt from Carly and thank goodness I did because it might be one of the most important. Know your worth – literally.

I don’t need a cure

In had already come to the conclusion that I didn’t want a cure a long time ago. I knew this because my disability is part of who I am. Without it, I wouldn’t have had the same experiences and learnt the same lessons. I wouldn’t have met certain people and I wouldn’t have the values I have today. I wouldn’t be me. Don’t get me wrong. I’m not saying that disability is all good. I don’t have to either. There is always going to be the really shit stuff. But you know what they say, it’s the really shit stuff that make us who we are. Helps us grow and builds character. However, there is another part of the equation that I hadn’t even considered till I read Carly’s book and heard her speak. Carly is often quoted as saying “I don’t want a cure for my disability, I want a cure for other people’s ableism” and this is probably one of the most spot-on things Carly has ever said. Half the trouble of having a disability is the treatments that we get from other people. The stares, the names, the access barriers. We refer to the social model of disability as the idea that environmental and social barriers are more disabling than our bodies. If we could cure people’s ableism everyday life would be so much less exhausting and more enjoyable!

There are many ways to do activism

Finally, right now I am struggling with a new set of challenges. I’m still trying to figure out my identity in the disability activism community. While I really like writing about disability (occasionally) and I want to seem like I’m contributing to my community with the platform that I have (my blog), I’m not sure if I want to subscribe to the title of disability activist. 1. Because I feel like it’s a lot of pressure on me to provide new content on disability every week and always stay active in the disabled community. 2. Because it’s not all that I am, and I don’t want people to think that it is all that I am. My passion lies with many different movements and communities – as you’ll find in my blog. Though I still worry if I’m doing too little for the disabled community or if I’m doing activism wrong; especially because there is still so much that I don’t know or understand about disability.

What Carly has taught me is that there is no right or wrong way to do activism. You can contribute as much or as little as you want. In fact, you don’t have to contribute at all and that’s cool (personally, I tried to stay quiet for a long time but as I’ve grown and established myself as a writer of sorts, I’ve come to the realisation that’s it’s not possible because my disability is such a big part of my life). The thing is, just because somebody is born with or acquires a disability, does not automatically mean they have to become an activist. Like I’ve always said, we are not put on this earth for the benefit of others (within or outside the disabled community). We’ve got our own shit going on and quite frankly, activism is exhausting. That’s why I don’t know if I want a full-time career out of it. That does not mean I care any less about the issues facing people with a disability. It just means that my own happiness and health is more important.

Thank you so much to the lovely Miss Carly Findlay for everything she has shared with the world. I would like to encourage all my readers to pick up a copy of “Say Hello” and prepare to be challenged and amazed. It’s a solid 4/5 stars from me!