The lessons non-disabled people must learn from reading Say Hello by Carly Findlay.
I first saw Carly Findlay on You Can’t Ask That, a program where people answer the questions no one dares ask in public. It’s an eye-opening show, aimed at removing stereotypes and misunderstandings about people who are often judged by the public.
Carly was on the show because she has ichthyosis, a rare genetic skin disorder which causes the skin to build up and scale. It is painful and affects other parts of the body.
This show was one of my first experiences seeing people with facial differences because, as I have come to understand, the media does not make much room for people with disabilities.
Carly joined us on Better Words shortly after finishing the first draft of Say Hello, and again a few weeks ago just after its release. We spoke about ableism and the challenges she faced in writing memoir.
Usually I refer to authors on this blog by the last name, but I feel like I can’t do that with Carly because I consider her a friend. So, there’s the full disclosure on our relationship. However, that has in no way influenced my opinion of her memoir which is something I encourage everyone to read.
Say Hello is fabulously engaging. Having met Carly and spoken to her for the podcast, it was easy for me to hear her voice in this. But I believe I would have felt that strong connection regardless, which is what I long for in a memoir. It felt like we were sitting down for coffee again and I was hooked.
I was surprised by how funny Say Hello was at times. Carly’s discussion about how being part of a fandom empowered her and changed her life is something I’m sure many people will relate to, as well as the trials of online dating.
However, Carly herself describes this book as angry at times and it is. Carly has every right to be angry and it is the job of non-disabled people to listen, not be defensive.
Say Hello may be angry, but it is also raw and honest, beautiful and funny. The chapters on skin hunger were my favourite, so intimate and gorgeously written. Say Hello explores every facet of human emotion.
I hope this books helps others with ichthyosis but I also hope non-disabled people read it and take on board Carly’s experience, changing any ableist behaviour they weren’t previously aware of.
We are all learning and I fully admit that until I followed Carly (and the fabulous Jessica Walton) I was ignorant to so many elements of ableism. So, I thought I’d share the biggest lessons non-disabled people should learn from Say Hello.
Lesson one: Disability is not inspirational
I’m sure many of non-disabled people have fallen into this trap: describing disabled people as inspirational. I’m sure I was guilty of this too. In Say Hello, Carly uses disability activist Stella Young’s term ‘inspiration porn’ to explain how not to talk about or to disabled people.
Carly explains she wants to influence the way people see disability, but does not want to inspire people simply by existing.
Of course we can’t control how others see us or what they’re inspired by. There will still be people who are inspired by us, without considering their entrenched unconscious bias and discriminatory beliefs about disabled people. But I hope that by changing the narrative through writing and speaking, and just being visible and present, I can help a few people shift from seeing me and other people as objects of inspiration and pity.
Lesson two: Disability is not a bad word
Throughout this review I’ve talked of disabled people and non-disabled people, the way Carly does in Say Hello. One of the biggest lessons Carly describes in the book is embracing her disability and finding pride in that along with a community of likeminded people.
Carly is proud of her identity as a disabled woman, unapologetic about her skin and ichthyosis. As she explains, “overlooking disability denies disabled people of our identity”.
Disability is complex. It doesn’t look typical. And often the physical and attitudinal barriers are more disabling than the diagnosis.
Lesson three: You don’t need to know anything about someone’s disability
I honestly can’t believe it needs to be said that it is not acceptable to laugh at someone’s disability, or ask intimate questions about their lives. In Say Hello, Carly highlights just some of the microaggressions she, and other disabled people, face on a daily basis.
Disabled people do not exist to satisfy your curiosity. Say Hello got its name because that’s what you should do. Disabled people are people: just say hello. Don’t laugh, don’t stare, don’t presume you can ask anything you like.
For you it might be the first time you’ve seen someone with a facial difference. You’re surprised, shocked, disgusted, pitying, curious, scared or even amused.I see the range of emotions on your face in the first few seconds of our interactions. Your face moves in slow motion. You nudge your friends, thinking I don’t see. You stop what you’re saying mid-sentence when I walk past you. Your kids point and persistently ask what is wrong with me. It’s all new to you. But for me, living with a facial difference is my everyday. Your reactions are my everyday. And responding to rude, curious and even sympathetic and concerned, questions is tiring.
Lesson four: Check your ableism
Carly describes ableism as discrimination towards disabled people, either unconscious or overt. Since learning about ableism, I notice it in so many places. Society is built for the abled and so I’m sure when you read Say Hello you might come across things you’ve not even considered as being ableist.
One of the things I was guilty of was talking about hope for a cure for disabilities. Carly explains this is especially common with disabled children and is tied to a view that we should fix the body instead of focus on what is possible. She also explains how the notion of ‘grieving’ for a disabled child is inherently ableist.
I think grief is linked to ableism, and the belief that disabled lives aren’t as valuable as non-disabled lives. Disability is believed to be a bad thing.
Lesson five: Disability doesn’t need to be eliminated or cured
This lesson relates directly to the previous one. Say Hello made me re-examine my views about the many awareness and find-a-cure campaigns which happen throughout the year. While they’re not necessarily all bad, there definitely needs to be a more nuanced discussion around them and living with disabilities.
As Carly says, disability is part of our rich human condition and all lives are worthy. It is not for anyone to say disabled people should change or not exist.
Imagine thinking someone’s life is so bad they’d rather kill themselves than exist. Imagine projecting suicidal ideations on a stranger.
Lesson six: Do you identify as feminist? Don’t forget your disabled sisters
This is a really important lesson, particularly as disabled voices are not amplified enough in the media. Don’t make disability and accessibility an after-thought. I am guilty of this as I often forget to write alt-captions for people using screen readers.
Disability is part of my identity, just like gender, race, sexuality and religion. It cannot be separated.