Living with an Invisible Disability 101: Carers

An online group I’m in recently posed the question of how we Crip Warriors should respond to the plethora of articles that discuss  ‘parenting a child with a disability”.

As we share the ‘Social Model’ Of Disability, and call out Ableism in all its manifestations, we also often point out how these articles, in the words of the ‘Disabled Feminism’ Facebook Group’s Moderator ‘centres the parent’s experiences over the disabled child …’

It’s true that so many of these articles are nothing more than ‘inspiration porn’, drawing attention to ‘brave’, ‘courageous’ disabled people who are labelled thus because they actually got out of bed this morning and did something – as if existing in a disabled body is just SO AMAZING and INSPIRING!  Accompanying this is the (usually unspoken) AREN’T WE LUCKY NOT TO BE THIS PERSON, SO LET’S BE GRATEFUL FOR OUR OWN HEALTHY BODIES!  Because we all know that living while crip is not for the faint hearted.  I don’t know about you, but every time I read something like this I throw up a little in my own mouth. Because, in the words of the late, great Stella Young, ‘I am not your inspiration, thankyou very much’!

What people with disabilities (PWDs) actually want is not this pathetic infantilising pity. We want equality, meaningful employment, a liveable income, and a society that doesn’t exclude us with built environments and systems that keep us perpetually on the outside looking in.

So, I read the article linked below. And was actually pleasantly surprised.

(I’m no big fan of ‘The Mighty’ as it so often DOES all of the above via what it publishes. So much inspiration porn, so much ‘poor me, I have a special needs child and can’t cope’. And they don’t pay writers, which pisses me off, especially when the writers are disabled and most likely really need the money.)

https://themighty.com/2017/10/i-parent-a-child-with-a-disability-and-yes-it-is-full-time-work/?utm_source=Mighty_Page&utm_medium=Facebook&fbclid=IwAR2bKJjfjPdt0K-EWnr45rLWy8l1mJXssREi7qkcvN-UMTqvUEQiiPZ39dk

Here is my response.

‘Honestly, the carers and parents of kids with disabilities DO need support and acknowledgement. I don’t think it’s an either-or situation. I personally was not offended at all by this honest explanation of what her life is like. She wasn’t complaining, she does the work willingly and lovingly, and her beef is with dumb people in the community who don’t understand what living with chronic illness is like, for both the ill person and their loved ones.

Yes, this article is centred on the mother’s experience because that is the subject of this piece. But what I also get from it is how hard she is trying to give her child the best treatment and quality of life possible. How can we knock that?

Ps. Having a ‘carer’ myself, I am very aware of burnout. We’re in this thing together and I try to always express my awareness of how relentless it can be and how much I appreciate the support. And to make sure they have the time and space to do their ‘own stuff’, pursue their own interests. Makes for a much easier, happier experience when dealing with shitty circumstances.’

My carer is also my partner. Sometimes I need a lot of assistance with daily tasks, and sometimes very little. There’s no doubt they have made my life infinitely easier, and I am immensely grateful to have such a kind, accepting person to walk this difficult road of chronic pain and illness alongside me.  My partner knows when to help, and when to let me manage things myself, and always, always listens to what I want and need and gives me the greatest of gifts, equality.

Another group member, responded with this (used with permission, edited for clarity by me):

‘I have mixed feelings because I do think parents need support and understanding. But if an article doesn’t make it very clear that their children are not a burden and that the extra work comes entirely from a horrible health care system and extremely poor treatment of disabled people by our entire culture it can increase stigma and cause disabled children to grow up with a lot of guilt and low self esteem.

This article didn’t really focus on the fact that the burden comes from the outside. The way to decrease the stress on caregivers is to improve the lives of disabled people, not giving sympathy to caregivers. While i’m sure it helps their self esteem not to be judged, it doesnt actually help them take care of their children.’

And the original poster responded: ‘That is exactly why this article rubbed me the wrong way- I just didn’t know how to explain it as well as you did!’

And that’s the rub.

Why am I sharing this? Because we want the society we live in to understand these issues, to understand what ‘inspiration porn’ is and how it marginalises and excludes us when what we actually want is the opposite. We don’t need pity, or to be told we’re ‘inspiring’. We don’t need to be treated like a ’burden’.

What we need are systems that work, that allow PWD’s to participate in society, for each to be afforded the opportunity to reach their own goals and potentialities.

And those caring for us need acknowledgement of the sacrifices they make to help us.  They need to be properly paid for helping keep us out of hospitals, so that instead of being ‘drains on the system’ we can be living useful and engaged lives. Just because we need a bit of support doesn’t mean we should be stuck in that black hole where able bodied people ‘feel sorry’ for us. Sorry doesn’t achieve a single thing that makes a disabled person’s life better. In fact, sorry makes me personally feel like crap. Save your pity for somebody else and pay me for my labours, in appreciation of my talents and abilities, instead of focusing on what I can’t do.

There is a lot I can, and do, do.

And that defines me way more than my disability does.

I am a person, not just a diagnosis. And I have value, just the way I am.

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