I am a person with multiple health conditions, neurodivergences and psychosocial disability. Some of these are acquired and others I have had since birth. I live a fairly busy and accomplished life which puts me into the position of being viewed as ‘inspiring.’ In the disability world being inspiring is generally viewed quite negatively. This is why…
There was an amazing media personality and disability activist called Stella Young who sadly passed away a few years ago. Stella gave one of the best TED talks I have seen which has rightfully been viewed millions off times. It was all about the concept of ‘inspiration porn.’ Here is a link in case you want to watch it – and I recommend you do. https://www.youtube.com/watch?v=8K9Gg164Bsw
The idea of inspiration porn is that disabled people are viewed as being ‘inspirational’ or ‘brave’ simply for doing things that we do every day. It is very icky and I don’t think anyone enjoys it. I had someone amazed that I could take the bus to work. This baffled me a little as I would imagine the ‘inspiring’ piece in my going to work would be more likely to be me being able to work in a middle management level in government administration but no, apparently I was worthy of inspiration for getting on the bus!
I think that inspiration porn is at its heart paternalism. It is very cringeworthy and I never know what to do when presented with it. Paternalism around disability can be more than annoying through. It can – and frequently does – hold us back. In the workplace many Disabled people are stuck in low level jobs because people think we are unable to do anything else. There is the notion that even having a job should make us grateful and why would we want a promotion? Paternalism is more than just irritating, it limits our opportunities.
Another related concept is that we are ‘brave’. This is another paternalism-related thing I think. Firstly I am not brave. I have to live my life with disabilities. It is not a choice. ‘Oh but you are so brave’ is a really unhelpful statement. Living my life does not require bravery. Everyone has challenges but do they get called ‘brave’? Well, not usually unless they have a disability of health condition. There is a whole load of language which only gets used when describing Disabled people. This is not OK and also holds us back.
I have been the ‘colour and light’ at more events than I care to mention. I have spoken at events where the non-disabled ‘experts’ have been paid and I haven’t, like it is an honour for me to speak but for the other experts it is their business.These days I refuse to do event like that. They usually involve the ‘experts’ presenting research and the Disabled speakers talking about our life story. Now I enjoy giving a life story talk but not when the organisers’ view is that my life story is the only expertise I have.
I remember speaking at an event a few years ago. I had bought along a selection of my Yennski books. One of the attendees asked me if I wrote one of my books and that I must have had ‘help.’ Apparently the book was too long for an autistic person to have written! Go figure. As a Disabled person my capability is called into question all the time. It is not ever OK. I am very bolshy these days and will challenge unhelpful attitudes but many people are not as bolshy as me and feel ground down by these unhelpful comments and micro-aggressions.
I have another, personal issue around inspiration porn which is that some of my life experience is in fact genuinely quite inspiring. I overcame being a prisoner many times over, being long term unemployed and having major addiction issues to being the Yennski I am today. These things probably actually ARE inspirational so I need to separate the inspiration porn from the genuine inspiration! So when someone sys ‘you are an inspiration’ I can struggle to figure out whether to be thankful or annoyed!
Basically Disabled people are not inspiring for just living our lives, paternalism helps nobody – and is really infuriating at best – and firefighters are brave but I am not! It seems to me that this should not have to be so difficult. And check out the Stella Young TED talk!