What it's like to have to defend your right to live

"The certainty in the sentiment that any child is better off dead than disabled rendered my disability invisible."

"The certainty in the sentiment that any child is better off dead than disabled rendered my disability invisible." Photo: Stocksy

I am pro-vaccination but I want to question the way that disability can be used as a means to an end when discussing this issue.

I recently had to unexpectedly defend my right to live to a room full of people.

I went to a dinner party with some new friends and towards the end of the night talk turned to the vaccination debate. My new friends talked of the polio epidemic as evidence of the need for preventive medical intervention and this led us to talk about preventive screening for Downs Syndrome and the desire for a 'normal', 'perfect' child. It was agreed by the majority that of course you would terminate a pregnancy that was found to be 'abnormal' or disabled.

Jacki Brown

Jacki Brown

As a wheelchair user who was born with my disability, I live a full and happy life and am glad to be in my different body and to have the unique perspective it provides me.

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The certainty in the sentiment that any child is better off dead than disabled rendered my disability invisible.

My friend who had invited me there and who hadn't spoken at this point looked at me and asked "What do you think of what has been said, Jax?" and all eyes turned to me and I had to defend my right to live.

I invoked the words of the critical disability scholar Rosemarie Garland-Thompson on the concept of normality being like the concept of beauty, something that is transient and socially constructed. Why is it that we try and preserve diversity in the animal and plant world and do not do the same with humans?

I also spoke of what a joy my life is, and the lives of those who have been my lovers and friends with disabilities, and that we need to challenge this view that our lives are not worth living or that we are 'less than', as it is these views that really impact on our quality of life.

I spoke of Stella Young and what a grand and immeasurable contribution she made to society.

I held it together. I managed not to cry but my voice wavered and I sounded like I was going to.

I told them I can understand the fear of having a child with a disability for those people who have no experience of disability. What their child's future could look like is unknown to them, and a key discourse shaping their decisions and informing their choices at this difficult time is a medicalised view of normality. Stella Young knew this when she said, "I've experienced some of the very worst disability prejudice and discrimination. Doctors might know about our biology, but it doesn't mean they know about our lives."

Is this how people think and talk around this country when it comes to disability? This is disability eugenics.

Conversations like this devalue the contributions to society of anyone with a disability.

This, situations like this, is the weight of marginality. This is minority stress. This is one of the fundamental things that make our lives hard, the unexpected times when you have to fight for your right to be as you are, when you have to tackle the assumptions all of a sudden and with no warning, and you have to do it well because if you don't the injustice will just continue on.

The responsibility I feel in these moments is immense and I never know if I have really changed a perspective, and the energy it takes comes at a cost to me.

I am pro-choice. Even in moments like these, when it is hard and my very being is called into question. I am for a woman choosing, but that choice should be an informed one, informed in part by perspectives like mine.

I will keep staying alive, because sometimes just living in a world which espouses your death is an act of resistance.