About two days before George Floyd was killed when a Minneapolis police officer knelt on his neck, a four-year-old Queensland girl named Willow Dunn died in squalor. I say ‘about’ because Willow died some days before being found – exactly when, will never be known. We will never know her last thoughts, her last words. What we do know is that vermin ate away at her malnourished body as she lay surrounded by filth. Willow Dunn had Down syndrome.
A few days later, I helped my four-year-old daughter Greta brush her teeth and walked with her to her bedroom. Greta has Down syndrome, too. She chose a book from the shelf and, climbing into bed, she pulled the doona over her lap while I read to her. She was tired. She’d been at kinder that day, her second week back since lockdown. It had been a particularly exciting day as her good friend Frankie had returned and the two hadn’t played together in months.
So there was no request for a second book. No need to hunt frantically for a fluffy toy that hadn’t been seen in months. Greta took off her glasses, yawned and snuggled down ready for sleep. As I closed the door part-way, I switched the hall light on, just how she likes it.
It was 7.01pm and I was about to take part in an online vigil for Willow Dunn. I lit a candle and posted a photo of it on twitter with the hashtag #hernameiswillow. I sat alone in my bedroom scrolling through images of other flickering candles, struggling to make meaning from this tragedy.
The murder of George Floyd sparked rallies across America and here in Australia, too. The Black Lives Matter movement made me ask myself how I could be a better ally, what could I do differently? I talked more to our kids about racism. I saw statues being toppled and brand names being changed. I saw white people stepping forward, accepting that this wouldn’t be comfortable and they wouldn’t always get it right but that standing by was no longer an option.
I also thought about Willow. After her vigil candles were snuffed out, what legacy would she leave? Could her tragic death transcend individual blame and lead to widespread change? Certainly people with Down syndrome deserve better. Whether it is equitable access to healthcare, inclusive education, meaningful employment or being allowed to migrate to Australia. People with Down syndrome, like all people with disability, are no strangers to systemic discrimination.
Back in America, in the weeks following Floyd’s death, the Graduate Employees Union of Michigan State University had decided they too could no longer stand by. They circulated an open letter to their University management with a petition demanding the resignation of Stephen Hsu from his position as Senior Vice President for Research and Innovation. According to the letter, Hsu, also the co-founder of Silicon Valley start-up Genomic Prediction, had allowed scientific racism to flourish at their university.
Race science, as explained by Angela Saini, science journalist and author of Superior: The Return to Race Science, has ‘always been innately political’ and has been used by prominent thinkers to ‘defend slavery, colonialism, segregation and genocide’. Hsu has regularly drawn attention to research that focuses on whether there are genetic differences between different groups. In 2017 he appeared in a video and in a podcast with far-right podcaster Stefan Molyneux, a man who has publicly claimed that ‘Mother Nature’s the racist. I’m just shining the light’. Speaking with Molyneux, Hsu lamented the ‘social justice warrior political climate’ that deemed discussion of the possibility of differences between groups unacceptable. As Molyneux grinned in agreement, neither appeared to hold any misgivings about the pursuit of this science that has division at its heart.
Hsu initially fought back against his university detractors with a petition of his own. Finally, on 19 June, he resigned at the request of the MSU President.
Back in Melbourne, Australia, I had been quietly cheering on those speaking out against Hsu. Although I had only recently learnt about his interest in race science, as the mother of a child who has Down syndrome, I was already familiar with his attitudes towards intellectual disability and what constitutes a life worth living. I first heard Hsu speaking late last year when he was interviewed on the Radiolab podcast ‘Unnatural selection’ . Here Hsu talked about the genetic technology his company develops and markets, and about his early influences. As an adolescent in 1970s America he would come home from school and watch Star Trek. He was particularly taken by the ‘genetic supermen’ of the Eugenics Wars who were ‘smarter and more capable and they almost took over the Earth.’
Young Hsu took an IQ test around this time and his score was in the top ninety-nine percentile. Those fictional genetic supermen were front-of-mind as he sought to understand why he was so smart. Was his high IQ the result of environmental factors, he wondered, or was there something different about his DNA?
Now in his fifties, Hsu’s fascination with intelligence has only deepened. His company, Genomic Prediction, is developing genetic technology aimed at predicting the intelligence of IVF embryos. While Hsu’s early influences came from the realms of science fiction, this technology is real.
Despite his blisteringly high IQ, in the Radiolab podcast Hsu struggled to find the right words for exactly what his technology is trying to avoid. ‘I think the medical term is, gosh, what is it? Is it mental disability? Something like that.’ Speaking about low IQ, he said ‘I look at people with that score, a lot of them have not had very, you know, I think, positive lives.’
He explained his attitude to pre-natal screening for Down syndrome in this way: ‘The most common thing right now is just to test to see whether the number of chromosomes is normal, to screen against Down syndrome.’
I rewound and listened to that part of the interview again, trying to grasp just how the lives of my daughter, of Willow Dunn and others with Down syndrome and intellectual disability could be so casually debased. Was it egotism, I wondered, or simply a failure of imagination? Did Hsu not understand a good life was not predicated on a high IQ?
Hsu is a man with the power to influence which embryos will and will not make up future generations. In his role at MSU as Senior Vice President for Research and Innovation he had authority over research funding allocation. How have Hsu’s values shaped his decisions and actions as he has performed these roles? What does he know about the lives of the people who, in his own words, his technology is designed to be used against? The advance of genetic technology is creating an ever-widening net with which ‘problems’ can be detected. But defining what constitutes a ‘problem’ is not an objective, value-free exercise.
Hsu’s Twitter account offered some insights into his underlying values. In his pinned tweet, Hsu is pictured at his graduation standing alongside Richard Feynman. Feynman is perhaps best known for his contribution to the Manhattan Project, the code name for the American-led effort to develop a functional atomic weapon during World War II. It made me wonder about the responsibility scientists have to advocate for the ethical use of the technology they develop.
Looking for answers, I came across the 1995 Nobel Peace Prize acceptance speech made by Joseph Rotblat. Like Feynman, Rotblat was a talented scientist involved in the Manhattan Project. The more I read, the less I thought he and Feynman would have been friends.
Rotblat spoke about his passion for science as a young child and how it was always linked in his mind with ‘benefit to people’. He did not imagine that the second half of his life, which he dedicated to the elimination of nuclear weapons, would be focused on ‘efforts to avert a mortal danger to humanity created by science.’
Rotblat finished his speech with this appeal: ‘Above all, remember your humanity.’
This June, the staff and students at MSU stepped forward to remind others of their humanity. By speaking out, the MSU Graduate Employees Union aimed to change MSU’s ‘institutional and administrative practices so that the passion and talent of Black scholars, Indigenous scholars, and other scholars of color (BIPOC) can be recognized and fostered within these university halls.’
I stand in solidarity with them as they fight for a world that values diversity, inclusion and equity. Their actions form part of the wave created by George Floyd’s murder. They are part of his legacy. Their actions are also an example of the intersection of different forms of discrimination. Hsu’s removal is not only a step forward in the context of Black Lives Matter. It can also be seen as a step toward a deeper understanding and valuing of people with Down syndrome and intellectual disability.
Our society has only taken the first small steps towards true inclusion of people with disability. In Australia, the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability has to date received more than one thousand submissions. In the days following Willow’s death, news reports circulated about a woman called Anne Marie Smith. Anne Marie died malnourished, her chair serving as both her toilet and her bed. Neighbours in her privileged Adelaide suburb had no idea that she was being grossly neglected by the person paid to care for her. Anne Marie had cerebral palsy. Less than a week after Willow’s death – which also occurred in Queensland – two autistic teenagers were found locked in a room in their home, discovered only after their father had a heart attack.
Adults my age who have Down syndrome are the first generation to have been routinely brought up outside institutional settings. Their parents challenged the expectations that their children would be better off unseen and separate from their family and community. They knew their cherished children had so much potential to learn and to love. Much progress has been made but there is a long way to go. Australia’s schooling system remains segregated. Often the first question I’m asked when I talk about my daughter’s diagnosis is: ‘Will she go to the same school as her brothers?’
Hsu’s comments about Down syndrome perpetuate the othering of those with intellectual disabilities and disability in general. His pursuit of science seeking to separate embryos on the basis of ability irrevocably harms the efforts of those working to build an inclusive society that values difference and diversity.
If Hsu did not judge from afar but was willing to come on over to talk with members of the Down syndrome community, he would find self-advocates and their families willing to challenge misconceptions about life with Down syndrome. These lives might be different to his, but they are full and varied and don’t hold any less value. He might fancy himself a Star Trek superman, but on this subject he has much to learn.
Image: Detail from a poster for Star Trek: Into Darkness