‘I might lose my hands but IVF is resumed’

IVF has been reinstated as thousands of people wait for life-changing treatment. It’s a case of the able-bodied using their privilege says one Queenslander.

When I was 12, doctors told me I would likely be infertile. My body had gone haywire – I’d lost sight in my right eye, my insulin and hormone levels were through the roof and I was diagnosed with a condition that made my body mimic brain tumour symptoms.

Residing in my body has only become more complex as I’ve aged, and despite having dreamt of being a mother since I held my first Baby Born, my infertility issues have never taken centre stage.

Last week, Victorian Premier Daniel Andrews banned IVF treatment for three months to make space for the Omicron wave. Tears and anger were splashed across the news and social media as people reacted to the decision, creating enough noise that the Premier apologised and reinstated IVF services shortly afterwards.

Melanie Swieconeck went viral after pleading for IVF to be reinstated. Picture: Instagram.

Don’t get me wrong – I’m over the moon for the folk who this will benefit. IVF is an important treatment, and I completely understand how heartbreaking it feels to know your body won’t hold a baby naturally, regardless of how hard you try or how much you want it.

But as I scrolled past infographic after infographic blazoned with ‘Infertility is not a choice’, my heart felt heavy.

Infertility is not my choice either, but I also didn’t choose to have hands that don’t work. It’s also not my choice to have several progressive auto-immune diseases that cause me pain everyday, or long-term viral issues that keep me tired, foggy and sluggish.

Yet nobody has been creating infographics for people like me. Beside me, my fellow disabled community is also missing out on life-changing (and in many cases, lifesaving) medical treatments due to Covid.

Imogen Kars is missing out on life-changing treatment. Picture: Supplied.

Let me tell you a story: I have been waiting for over ten years to have surgery that will (hopefully) save my hands. Recently they’ve taken a turn for the worse, and I’m confident that I could lose general use of them in the next five years or so without intervention.

My ‘elective’ surgery has been cancelled and shoved into the abyss of time. My other option is flying across the state to chew ten thousand dollars deep into my pocket in a private practice.

Is my right to keep my hands not as important as my right to have a baby? It’s worth noting that I wouldn’t even be able to care for my own baby if my diseases continued to progress without medical treatment.

Imogen Kars may lose the use of her hands if she doesn’t get treatment soon. Picture: Supplied.

So why the silence? Well, the answer lies on the crux of privilege and ableism. Since the pandemic began, disabled people have been left to fall to the wayside.

Just in the last week, the Guardian reported that many disabled folk across Australia have gone without essential care including bathing, feeding and help with mobility because of the lack of access to Rapid Antigen Testing kits. Some are being left to sleep in their wheelchairs. Another woman living with muscular dystrophy was forced to spend $1300 on RAT’s for her care staff, a fee that her NDIS package refuses to cover.

Many disabled people like Imogen are being left behind during the pandemic.

Despite disabled folk accounting for about one-fifth of the Australian population, ableism is a prominent part of our society. Just look around you: our social services don’t account for disability, our infrastructure forgets about disability, our workplaces and work hours don’t care for disability and our healthcare system disproportionality dismisses disability. I didn’t think healthcare for someone like me could get worse. Now it has.

There’s a certain element of privilege in being able-bodied, even if you’re spending thousands to try to have a baby. I would do anything for my only major health issues to be my dreams of reproducing.

So I’m going to say it – IVF isn’t lifesaving. I’m so sorry to the women who have dreamt of motherhood. But I dream of a day where I can brush my hair without cringing in pain. Where I can climb mountains and see my friends and work on my passions without crumpling into a tired, soggy ball of despair at the end of the day.

Like most in the disabled community, I’m exhausted and feel like a broken record. When will the bubble of privilege burst?

Imogen Kars is a freelance writer.