When he was 27 years old with two small children, my Dad had a major car accident. I was five, and that night is etched into my memory. I remember what he was wearing, I remember how tall he seemed, I remember standing in the doorway with my Mam and 3 year old brother waving good bye to him. I remember being woken by Mam later that night and walking next door to the neighbour’s house so she could scramble to the hospital.
Left with permanent brain damage and in a wheelchair, Dad’s fury filled our home every day.
He did his best and I don’t doubt for a moment his love for me, for us. His frustration, his lack of agency, his depression, his rage, were all taken out on our family. Dad did not feel “blessed” to have a disability. I know this because he constantly told us his life was over the moment he had that car accident. Constantly.
There was no NDIS back then. Home Care would come a couple of times a week to help Dad shower. We helped him the other days. We lived in Housing Commission. We wrestled a heavy electric wheelchair into an unmodified car (when he finally got one). Dad couldn’t work and Mam worked part time while being a carer for a Dad and trying to create a stable home for us. As Irish immigrants, there was no family support to help. We felt very alone. I can’t imagine what my Mam went through.
Dad did not feel “blessed” to have a disability.
With little short term memory, Dad would remember he was angry with us, but not why. The smallest thing would set him off and home life was full of tears, flipped tables, a lot of screaming. His anger consumed everything in his path, his face as dark as a thundercloud. I can’t bear a slammed door now.
When I was eight, I was diagnosed with an incurable genetic disease that impacts my life every day. I do not feel “blessed” to have this disease. My life is harder and will be shorter.
I do not feel “blessed” to have this disability. My identity is not defined by my disability. I would rid myself of it in a heartbeat if I could.
When I’m asked what I do for a living I answer I work in Marketing for a performing arts organisation, but in reality it’s like I have two full time jobs: the one I’m paid for and feel like a contributing member of society with, and the other is managing this chronic illness that is a milestone around my neck.
I do not feel “blessed” to be disabled.
I fully support people with a disability and a platform rejecting Scott Morrison’s recent assertion that his family is “blessed” not to have children with a disability, and I get it. I understand why this has rankled so deeply. The condescension, the smugness, the underlying allusion to being part of God’s Chosen, got to me too. Especially when as prime minister there is no one in a better position to make meaningful change to assist people with a disability to live their lives with dignity and choice. But he acknowledged his privilege and his lack of first-hand experience. As he should. I think he is lucky. I think his children are fortunate. I was not born under this same lucky star.
Just as there is in the ‘real’ world, there are many people with a disability who are high achieving members of society, contributing at a professional level, at a political level, and a societal level that often makes them default spokespeople for the rest of the community. Great for them. They make no apologies and get sh*t done.
But they don’t speak to or for all experiences in the disability community.
I don’t want to be your inspiration porn. I don’t want to be satisfied I’ve made it this far. I’m exhausted. I’m tired of putting on a brave/happy face. I want real change and pretending I’m happy with the cards my Dad was dealt and the ones I play with now is not going to make that happen. I’m angry.
Obviously it’s fine to embrace your disability, and shout about it from the rooftops. As long as your happy face doesn’t mean others think everything’s all good, there’s nothing to see here. Toxic positivity is not only poisonous to the individual, it’s poison to the systemic change we need to get behind.
Some of the toxic positivity surrounding the “blessed” debate is a distraction from what we should be shouting about: fully fund the NDIS, pay people with a disability at least minimum wage (my Dad had a brief stint in a sheltered workshop and it was awful), make medication and aides free, fully fund treatment/cure research. Treat people with a disability as the full members of society we/they are. Morrison didn’t even answer the actual question he was asked, and the master of deflection got away with it. Again.
I congratulate those who embrace their disability. My Dad certainly didn’t celebrate his and I don’t appreciate mine. I live a full and happy life in spite of my disability. Having a chronic illness is expensive, time consuming, life limiting and often painful, shameful and embarrassing. I don’t want it and you wouldn’t either. Nor should I be expected to celebrate it.
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