An extract from the new anthology, We've Got This
More than 15 per cent of Australian households have a parent with a disability. This month, a new anthology, We’ve Got This: Stories by Disabled Parents, shines a spotlight on those stories that are rarely shared in parenting literature. In this edited extract, contributor Jax Jacki Brown writes about their experience.
‘Do you want to have kids some day?’ I asked her on a cold winter’s night, while we waited for a cab in Fitzroy.
Before meeting Anne, I’d never really thought about having children. As a queer, non-binary wheelchair-user, I thought it would be too hard to conceive and, if I’m honest, I didn’t believe I’d find someone who would love me enough to not only choose me as their life partner but have children with me. Internalised ableism meant I’d never allowed myself to entertain the idea that I might become a parent one day. So it was weird, only a few months into our relationship, to be asking Anne this question, letting it fall into the freezing winter air between us.
Two years into our relationship, we revisited the kids question. I had been invited to speak on disability rights at an LGBTIQA+ conference. After my session, Anne andI went to one on ‘Fertility Options for LGBTIQA+ People’, delivered by the woman who would become our fertility specialist, whose name was also Anne. She spoke about the different ways LGBTIQA+ people could try to conceive. Dr Anne also talked through the options for testing embryos for genetic disabilities, and someone, not me, broughtup that testing for disabilities and screening out those embryos found to be positive for ‘abnormalities’ was ableist and a form of eugenics. Instead of shutting down the discussion, Dr Anne said no one had shared that perspective before and that she’d be open to discussing it further after the panel was over. We stayed behind and ended up having a really great conversation with her. This experience motivated Anne and me to talk about starting a family – and before we knew it we were turning up to the fertility clinic for our first appointment.
We were both in our early thirties with no known fertility issues and a lot of excitement about this new chapter in our lives together. When we talked about how we might create our family, Anne surprised me by saying she’d love to do partner IVF and carry my egg in her womb. I wasn’t really interested in becoming pregnant, but I liked the idea of having a genetic link to our child. Queer people and people with disabilities often have the legitimacy of our parenthood questioned, so knowing that my status as my child’s parent could never be questioned was very important to me.
We didn’t know any cisgendered men we’d feel comfortable asking to donate sperm, so we chose to use an anonymous donor recruited by our fertility clinic. We loved the idea that partner IVF allowed both of our bodies to play a part in creating our child.
At the information night for prospective parents run by our clinic, a nurse told us about the genetic tests run on donor sperm. For an extra fee, she explained, they could also run tests on us and any of our future embryos to screen for cystic fibrosis, haemophilia A, Tay-Sachs disease and two intersex variations – Turner and Klinefelter syndromes. Intersex variations are the ‘I’ in LGBTIQA+. Discovering that part of the community to which I belong – a community I greatly value – was being screened out was really confronting and distressing. We also learnt that all donor sperm in Victoria is pre-tested for cystic fibrosis, fragile X syndrome, spinal muscular atrophy and thrombophilia. We couldn’t opt out of this screening: only sperm free of these conditions is accepted by IVF clinics.
Before attending this session, Anne and I had talked a lot about our capacity to raise a child – including, potentially, a disabled child. We’d talked about the barriers a disabled child might encounter, as well as supports and services they might need and advocacy work we might have to undertake as their parents to get them access to these things. These conversations forced me to confront my own internalised ableism. I feared the additional prejudice and discrimination that a disabled child might encounter – I knew too well how utterly exhausting it can be. But I also knew that I could teach them resilience, pride and the value in being different, as well as connect them to the disability community.
So I told the nurse that we didn’t want to be tested, that we wouldn’t be screening any embryos. I said, ‘Disability is part of human variation.’
In response, she leant across the table and grabbed Anne’s hand, looked her in the eye and said, ‘But it’s your choice, is that what you want?’
It was as though she thought I had inappropriately influenced Anne’s decision not to test for disability and she needed to let Anne know there was still time to make a different choice. I wondered, in that moment, what additional pressure the clinic would have applied to us to screen for disabilities had it been my body – my visibly disabled body – carrying our child. There is a fear of disabled people reproducing because we may create disabled children. Disability like queerness and other non-conforming identities are seen as not just ‘other’ but ‘less than’ by a society that seeks to reproduce the ‘norm’. Disabled people, queer and trans people along with people of colour have long been discouraged or outright prevented from having children due to fear that we will taint the human race. The experience of disability, it is assumed, should be avoided, and that people with disabilities should feel ashamed of the things that make them different.
I am forever grateful that in my early twenties I stumbled across the social model of disability: the idea that disability is not all these negative assumptions and stereotypes but is instead a human rights issue. Under the social model, disability becomes an identity, and to say one is ‘disabled’ is to say, ‘I belong to an oppressed group fighting for my human rights!’ I use the word ‘disabled’ here to reclaim it, not as a slur or a put-down but to explain that I am dis-abled or disadvantaged by an inaccessible society and other people’s attitudes or stereotypes about disability, not my body or mind being different from a socially prescribed ‘norm’.
Disability is a part of human variation or an aspect of diversity, but it is often not seen this way by the healthcare industry, and it was the multibillion-dollar IVF industry that we were entering to try to have our baby. It was very confronting for me as a political and proud disabled person to have disability framed as ‘wrong’, as something that should be screened out – for a fee by the clinic.
A few weeks later, we attended an information night for LGBTIQA+ folk wishing to conceive, and an IVF specialist gave a presentation about the services on offer. Someone asked how they could prevent disability. I was sitting beside her. The fear in the room was visceral: no-one looked at me while they talked about the options for screening. I was the supposedly terrible thing that could happen to their future children if they didn’t do everything possible to prevent it, eliminate it, test for it, terminate anything deemed ‘abnormal’. I felt invisible and hyper-visible at the same time.
Lying in bed that night, Anne and I talked about how horrible that moment had felt – for her, too as my partner. We asked ourselves why we stayed silent, what we could have said to challenge the narrative in the conversation – and what had stopped us from doingso. We concluded that we didn’t speak up because it could have easily become combative, and it didn’t feel like a safe space anymore. Considering having a child and investigating the ways to do so is an emotional and raw process for everyone. For people with disabilities, it can carry an additional weight of both internalised and external ableism. Sometimes it feels powerful to speak up and challenge people’s views by providing an additional perspective on disability and at other times doing so feels overwhelming, exhausting and unsafe.
