Last night’s Australian Story was more familiar to my family than most.
Aptly titled ‘Tough Love’, the episode featured the very much in love Michael Cox and Taylor Anderton, a young couple who also happen to have Down syndrome.
Michael and Taylor have been dating for two years, and engaged for one. They cannot wait to be married, and afterwards, they want to have four children together.
Catherine Musk, Taylor’s mother, said in the opening moments of the episode, “Taylor and Michael want to get married and have children, and that makes me feel very worried. It’s not going to happen. It can’t happen.”
What ensued was a nuanced, complex and carefully considered analysis of Michael and Taylor's rights, weighed up alongside their emotional and physical capacity to parent.
It was an uncomfortable conversation fraught with ethical dilemmas. The episode undoubtedly asked far more questions than it answered.
As was to be expected, viewers were divided.
People with Disability Australia (PWD) posted the following statement on their Facebook page.
They cited the UN Convention on the Rights of Persons with Disabilities (CRPD), that Australia is a signatory to.
"It states that we must eliminate discrimination against people with disability in all matters relating to marriage, family, parenthood and relationships to ensure 'the right of all persons with disabilities who are of marriageable age to marry and to found a family on the basis of free and full consent of the intending spouses is recognised'," the group wrote.
I absolutely support the Rights of Persons with Disabilities.
And if this story was not so familiar, I would absolutely agree with PWD that "people with disability have sex, get married and have children and have the same rights and obligations as other parents."
But what about the rights of Taylor and Michael's parents, and the rights of children born to parents who cannot care for them? When one person's rights infringe upon someone else's, is it time to reconsider?
I have an intellectually disabled aunty named Michel. Like any individual who lives with a disability, Michel's life skills are difficult to define. She can read and write at a basic level, and can cook. She struggles socially, is extremely indecisive and is prone to angry outbursts. Doctors say she has the intellectual capacity of a seven-year-old.
When Michel was in her early twenties, she decided she wanted a baby. Her parents (my grandparents) knew she did not possess the skills required to raise a child. Michel has always changed her mind a lot. My gran — much to the dismay of disability advocates — would slip the contraceptive pill into Michel's morning cereal.
Michel finally discovered what was happening and, determined as she was, stopped taking The Pill. Before long, she fell pregnant to a man who was also intellectually disabled. Nine months later she gave birth.
It was a matter of hours before Michel agreed my grandmother and grandfather would raise her son, Simon. She had so desperately wanted a baby, but once Simon was in her arms, Michel didn't have the desire or the capacity to look after a child.
It was a few months before doctors discovered Simon was also intellectually disabled.
So at 60, the same year my pop retired, my grandparents took in their grandson. The life they had planned out suddenly looked very different.
At 89 years of age, my grandfather cares for 30-year-old Simon full-time.
Listen: Jessie shares her strong opinions on this ethically murky topic. Post continues below.
To be clear, this is not a story of tragedy. Simon is one of my favourite people in the world. I speak to him nearly every day, and he brings so much joy to all of our lives. None of us would ever dream of a world without him.
But when I look at Michael and Taylor, I see so much of Michel. She was naive. She didn't understand how hard it is to raise a child and that she didn't possess the emotional maturity. At 56, Michel still struggles to care for herself, and it would not be fair on Michel to expect her to care for another person.
If my gran hadn't stepped in, there was nothing to stop Michel having more children. As many as she liked. And if it weren't for my grandparents, they all would have become wards of the state.
Last night, Michael said to the interviewer, "It's not that hard to have a kid. I know that some people say it's all about hard work but it's not — it's all about love and compassion that you have for your child." But it is. It's really hard.
I understand the argument espoused by disability advocates. Michel's body is her body, and no one else should decide what she does with it. My concern, however, is that they're not there at 3am changing a nappy. They have no responsibility to the child once they are born. They are not potentially sacrificing the rest of their lives caring for a child that they did not choose to have.
Although last night's Australian Story was extremely divisive, surely there is one thing we can agree on: there are no people in the universe who know Michael and Taylor better than their own parents. No people who have their best interests more at heart.
Catherine and Gavin Musk and Nikki and Simon Cox desperately want to do the right thing, and their only motivation is unwavering love for their children.
'Down syndrome' or 'intellectual disability' are in no way blanket terms. The diversity within these conditions varies enormously, and Michel and Taylor might not share the same story.
But I think we need to balance the idealised argument for "bodily integrity" with the practical implications of having a child who may need to be cared for for the rest of their lives.
To paraphrase Michael's father, Simon Cox, it will ultimately be the parents picking up the pieces.
Top Comments
This scenario played out in our family a few years ago, and it was disastrous. My (then) 20 year old cousin who has a chromosomal disorder and the mental age of a 9 year old, fell pregnant to an abusive man and was at risk of having the baby taken at birth by the authorities. An aunty stepped in and rallied other family members to help teach her how to mother the bub, feed, bathe, etc - all to no avail. Someone had to live with her 24/7 (4 of us took shifts of a few days at a time) as once the excitement of all the visitors and attention and gifts wore off, she completely lost interest in the baby - not wanting to feed her etc. She was completely and utterly unable to care for the child, and unfortunately her own mother was unable to help due to mental illness issues - and the rest of us had our own lives, children and jobs to go back to, so bub was surrendered to foster care. We tried to have my cousin fitted with a reliable contraceptive, but DSQ blocked us at every opportunity, resulting in the birth of 3 more babies to different men over the next 3 years. All of the children are in foster care and all have inherited serious chromosomal disorders which adversely affect their health. My cousin didn't want children - she wanted a cute baby to play with, she wanted to be fussed over, she wanted gifts and cards and visitors. Once all of that stopped - she didn't acknowledge the babies at all and they became in serious danger of dying of neglect and starvation without intervention. As a family, we knew that this would be the outcome - but because my cousin has 'rights', all responsibility for the consequences of her sexual activity went out the window. It could all have been avoided, and it broke our hearts to see those babies taken away one by one. I'm not saying this would be the case in every scenario, but this was our experience.
Such a well written personal article. Thank you Jessie.
If we consider the reason for this "argument/discussion", which is simply that everyone and anyone has the right to make choices for their own lives, I have to agree. However, as the mother of a child with a very complex genetic condition, who at last assessment, was considered to not have an intellectual disability because he scored 2 points over the IQ defining an intellectual disability, I have to say that soooooo much more needs to be considered. It is never black and white.
If I freely allow my son his basic human right to eat food and drink whenever he is hungry, then he would be dead! So I have to restrict his access, simply for his own wellbeing. There is no cure for such a genetic condition, so that will need to be the case for the rest of his life.
Are people arguing for the wellbeing of Michael and Taylor, as their parents are clearly doing? Or are people shocked and upset that we have to restrict and control, thereby removing "basic human rights"?
And who can honestly believe that fully funded support would be readily available for parents with a disability to help them care for the life long needs of their child, who may end up having even more complex needs than they have themselves??? My son is registered on the Disability Support Register but has not been allocated a funding support package, simply because THERE ARE NOT ENOUGH FUNDS!!!!
Why is it so horrifying for the parents of an adult with a disability to actually think ahead about what their child's future would be like and say that it scares them! I am scared everyday, just thinking about the future for my son, and of course his sister who could end up being his carer. No one cares more for their child than a parent. Allow them to freely make the extremely difficult decisions that need to be made in the best interest and wellbeing of their child. Don't make a judgement until you walk a week in their shoes!