The rights of women to bodily autonomy are non-negotiable. So are the rights of people with disabilities. Danica Kohn on Melbourne Fringe show 19 Weeks

Content warning: This may be difficult for people with Down syndrome and their families to read. I attended this performance with two other parents of a child with Down syndrome and we found it difficult to watch. I found this difficult to write. I hope that I am representing our community in a way that doesn’t cause distress. I also give my deepest sympathies and respect to anyone who has experienced trauma relating to termination or any other aspect of their reproductive rights and/or autonomy.

19 Weeks is an autobiographical work detailing playwright Emily Steel’s first-hand experience of a late-term termination, which was undertaken in 2016 after a prenatal diagnosis of Down syndrome. The show is performedin hotel swimming pools as a series of monologues by Tiffany Lyndall-Knight, to small audiences of around 20. To date, it has had Fringe Festival seasons in Adelaide, Perth and Melbourne.

In the play, Steel documents her personal story in great detail. She talks about the decision made by herself and her partner to terminate a pregnancy if the fetus was diagnosed with Down syndrome, the reasoning behind this decision, the precise timeline of the diagnosis’ confirmations, her interactions with medical professionals and counsellors as part of this process, and other people’s responses to her story. It is clear in the dramaturgy of the show, and also in Steel’s comments in interviews, that her primary interest in making the show was to break the silence around late term abortion and to challenge associated stigma.

19 Weeks has been met with near-universal critical acclaim and has received several awards, including a prize at the Adelaide Fringe Festival that provided support for it to tour to Melbourne Fringe this year, which is where I saw it.

It’s important to state that I share the playwright’s assertion that every woman has the right to judgement-free and safe access to abortion. I am not pro-life, I do not believe in policing women or undermining the decisions other women make about their bodies. I can imagine that this performance may have been healing or liberating for a woman who has experienced a termination. I do not stand in judgement of the playwright’s decision. But I am deeply disappointed about this production’s dehumanisation and stigmatisation of a vulnerable community – people with Down syndrome and their families.

I have a lot in common with the playwright. I received a prenatal diagnosis of Down syndrome at 19 weeks. I too had a toddler at the time. Like Steel, I had worked with performers with Down syndrome. My husband and I made a different decision: to continue the pregnancy. Like the pro-choice writer and academic Michael Berube, whose wife also received a prenatal diagnosis of Down syndrome, “in the grand scheme of things, among all the varieties of intraspecies difference, we decided Down syndrome wasn’t that big a deal.” This was despite the fact, as the playwright’s own experience exemplifies, it was widely expected that someone in my position would terminate the pregnancy.

When we received our diagnosis, we researched. We sought out qualitative and quantitative data about the quality of life for people with Down syndrome, their siblings, parents and extended families. We sought information about associated health complications. We contacted the state Down syndrome association. We met and spoke with parents of children with Down syndrome of different ages. We reflected on our experience meeting and working with adults with Down syndrome. We went to the appointments. All of the appointments.

We made an informed decision. The decision that was right for us. The playwright articulates her own reasoning for her decision and I am not doubting her sincerity. What she fails to do is to unpack the social pressures that affect people’s choices, review the evidence base, or represent any lived experience of people with Down syndrome and their families. Instead, she offers a tragic vision of a life inevitably destroyed by having a child with Down syndrome.

Eight and a half years down the track, I have absolutely no regrets about our decision. My life is nothing like the tragic depiction offered in 19 Weeks. My life is good. It’s actually pretty joyful (and my son with Down syndrome is a big part of that). I work. I have friends. I have a happy marriage. My days are filled with all of the everyday highs and lows that come with parenting three children in 2018.

Given that this show aims to liberate vulnerable people from experiencing stigma, it is surprising that 19 Weeks itself stigmatises other vulnerable people. It’s understandable that a play written within months of a traumatic event, and dealing with such immediate, personal material might unknowingly result in such an oversight. However, there has been plenty of time for the creative team to have considered other perspectives. This is the third season and the second director for this play.

Here’s the problem. Abortion is a woman’s choice. A women’s right to bodily autonomy and her reproductive rights are not negotiable. Full stop. However, presenting an uninformed and false picture of Down syndrome and the reality of being the mother of a child with Down syndrome to validate the argument for women’s right to termination reinforces one social stigma in order to challenge another. There is no need for this. It does not need to be a zero-sum game.

Steel provides a lot of detail about her experience of receiving a diagnosis of Down syndrome and her decision to terminate. She vividly paints a picture of her anger, frustration and the disturbing details of the physical pain she went through in having the termination. But in the dramaturgy of this play, she perpetuates the stigma of people with Down syndrome by dehumanising them. People with Down syndrome are referred to in passing, never by name, never as independent – there’s a nameless group out with carers eating donuts, a nameless actress and model with Down syndrome appears on television, or a nameless group of performers with whom she has worked.

The references to people with Down syndrome reflect all the familiar tropes; cute happy kids, sick kids, burdensome, dependent adults, and so on. The only detailed characterisation of a person with additional needs is of the playwright’s uncle, who has Friedreich’s ataxia (a genetic disease affecting the nervous system) and an unnamed intellectual disability. Hall – an able-bodied performer – impersonates Steel’s uncle as a derogatory caricature. The characteristics of these two disabilities are completely different and, more importantly, every person with or without a diagnosed disability is different. This lumping of all people with disabilities into a single category is very familiar for people with disabilities and their families.

I could relate to much more in the show than receiving a prenatal diagnosis of Down syndrome at 19 weeks. Through her uninformed and vaguely drawn representations of parents, Steel highlighted what parents of children with Down syndrome face all the time – parental stigma (also known as affiliate stigma). I have years of experience when it comes to parental stigma.

When faced with the diagnosis of Down syndrome, Steel lets us know that she couldn’t parent a child “like that”. Like what, exactly? My child is not a “that”. He is a human being. An eight-year-old boy whom I love and who loves me, who goes to school, has friends, plays with and fights with his brothers (depending on the moment), who has ambitions, fears, strengths and weaknesses. My son is more like his brothers than he is like another child with Down syndrome.

I love all three of my kids equally. All three of them cause me stress and wear me out. I juggle work and parenting and relationships just like all mothers of three children. I have a good life. I am happy. There has been a wealth of peer-reviewed research in recent years about the quality of life of people with Down syndrome and their families, with remarkably consistent findings, summed up by Chris Kaposy, Associate Professor of Bioethics at Memorial University, Newfoundland in this way: “People with Down’s syndrome tend to lead flourishing lives. Their families typically thrive. Perhaps more parents would choose children with this condition if they knew these facts. Prospective parents should be empowered to make choices in favour of parenting children with disabilities like Down’s syndrome, rather than being prohibited from choosing against disabilities.” (Kaposy, 2018)

There are two references to parents of children with a disability in 19 Weeks. The first is Steel’s grandmother, who is presented as a sad, unfulfilled, jobless victim on the one hand, and a selfless superhero on the other. We don’t know how the playwright’s grandmother felt about being the carer of her adult son. I wonder how she would feel about being characterised with such (contradictory) clichés in order to undermine the quality or value of a life that includes caring for an offspring with a disability.

It appears that the grandmother/uncle story is told in 19 Weeks to illustrate and validate the playwright’s opinion on how difficult raising a child with a disability might be. (I repeat, this situation is not an example of parenting a child with Down syndrome.) Steel’s uncle has a different disability. It’s completely unrelated experience. We are also fed the classic trope of how amazing her grandmother was for caring for her son. The superhero cliché is as offensive as the victim one. My son having an extra copy of the 21st chromosome does not in any way give me the right to get about in a cape.

To be clear, I also do not think my son with Down syndrome is a gift from god sent here to teach me loving kindness and patience. (I am not Christian.) This misconception is equally tiresome. Parenting a child with Down syndrome does not in any way make me a more selfless or “better” mother than any other mother. It does, however, help me spot ableism and systemic bias and give me a bit of extra drive to call people out on misinformation and disrespectful behaviour.

The second reference to a parent of a child with a disability was actually the mother of a child with Down syndrome. Steel describes a moment in which, on seeing the playwright, the mother turns her back and walks away. This mother is the villain of the piece, the only person who does not shower the playwright in love and understanding about her decision to terminate.

We have no context for this encounter: it’s a single moment with no back story or commentary. On the surface, it appears ambiguous. Is this moment there to demonstrate the guilt Steels feels? No. Of course it doesn’t read that way. Steel is perfectly clear in letting us know throughout the play that she has no regrets about terminating her pregnancy. As a result, it serves to further demonise the parents whose lived experience means that they are upset at the thought of fewer people with Down syndrome being in the world.

The fact is, most of us who have a child with Down syndrome do think that it is unfortunate that there are fewer people with Down syndrome being born. We actually believe that there is inherent value in diversity and the chromosomal profile of Down syndrome does not make us feel uncomfortable, sad, burdened or repulsed. Bioethicist Chris Kaposy explains this parental perspective in his op-ed in the New York Times.

Unfortunately, being in this position can make us appear defensive or anti-abortion. This is the tightrope that parents of people with Down syndrome walk every time we enter into a conversation about prenatal testing and Down syndrome.

19 Weeks draws its power from harnessing the distressing and painful detail of having a late termination and demonstrating to us the isolation an individual may feel in this situation. Steel doesn’t ask the audience to consider the ethical dimensions of a decision to terminate solely based on a Down syndrome diagnosis or, more importantly, the decision to write a show on the subject without consulting members of a community she is representing.

In publicity for the show, Steel mentioned that she was worried about the responses people might have to her story. She speaks of feeling isolated. I have no doubt that people who decide to have abortions are stigmatised and feel isolated. What the playwright surely knows and is not saying in 19 Weeks is that her decision is statistically the most common (60-100 per cent, depending on which country you live in – for the record, Australia is approximately 90 per cent). Those who choose to continue with the pregnancy are in the minority, and that minority continues to live with outdated stereotypes and unwarranted social stigma.

Overwhelmingly, medical professionals and people who don’t have a family member with Down syndrome will not subject you to stigma for terminating. On the contrary, it is widely reported that women who choose to continue their pregnancies are repeatedly offered terminations after making their decision, and feel stigmatised and isolated for making this choice. From my lived experience and the experience of countless parents in the wider Down syndrome community, Down syndrome is presented as a condition that is problematic and undesirable, rather than what it actually is: a condition that is part of the natural diversity of life.

Steel has been contacted by other parents of children with Down syndrome in relation to her work. When asked about the response from parents of children with Down syndrome in an interview with the ABC earlier this year, Steel responded “I think this is complicated, it’s a complicated issue…I would not want to dismiss their concerns. I hope that what the show does is, it talks about this choice intelligently.” If Steel had genuinely considered these concerns and ensured that the information she cited in her show was factual, I would have no concerns about 19 Weeks.

Some facts about Down syndrome that were absent from 19 Weeks.

• Down syndrome is the most common chromosomal difference. It occurs across cultures and across species. It is part of the natural order of life.
• Down syndrome is not a painful or life-threatening condition and should not be compared with other painful or life-threatening conditions that can be detected prenatally. Nor does it affect a woman’s health or place a woman at risk during pregnancy.
• Everyone with Down syndrome is different. People with Down syndrome are more like their families than they are like other people with Down syndrome.
• People with Down syndrome are human beings that experience the full range of emotions, love and care for others and contribute to society in a myriad of ways.
• People with Down syndrome and their families (including siblings and parents) report higher levels of happiness and life satisfaction than those not living with Down syndrome. There are lower divorce rates in married parents of children with Down syndrome.
• People with Down syndrome have healthy and loving relationships, can and do work and live independently.
• People with Down syndrome put up with a ridiculous amount of bullshit from ableist people with typical chromosomal profiles.

If all you knew about Down syndrome was learned from seeing 19 Weeks, then you would not know any of these facts. Instead, Steel paints an unremittingly negative picture.

If you do not have lived experience of Down syndrome or have a family member with Down syndrome, please take some time to consider this: how do you think a person with Down syndrome might feel about this show and its inaccurate and dehumanising representation of Down syndrome?

Honestly, the only thing that bothers me about being a parent of a child with Down syndrome is the outdated and uninformed attitudes of people. Ableism is everywhere, and it’s exhausting.

I think it is possible to create a show about late-term termination that doesn’t insult and stigmatise people with Down syndrome and their families. That was what I was hoping for. Instead, I sat in the audience with two other parents of children with Down syndrome who, once again, gracefully contained their anger in order to not offend anyone who may have experienced abortion.

I am deeply disappointed. Not because the playwright made a choice about her own body, but because she fails to recognise who she has dehumanised and stigmatised in the dramaturgy of this work. I am most disappointed that the issue of women’s reproductive rights, which to me is a completely clear moral and ethical issue, is being presented in a way which perpetuates the ableist narratives about Down syndrome.

It is heartbreaking, disappointing and exhausting to be in the position of defending the humanity of my child and my family. Again.

Thank you to my husband Chris, Sonia Bonadio and the other parents I contacted for their feedback about this response.

Danica Kohn originally published this as a post on Facebook