Back in 2002 when I was a righteous young 19 year old immersed in studying social work and radical feminism, an IHC advocate came to speak to our class. His lecture and notes were on the fight to stop the practice of sterilising adults with intellectual disabilities. My imagination filled with couples with Downs Syndrome like this amazing couple and combined with my hatred of anything resembling eugenics, I was absolutely horrified at what I was being told. It was a black and white issue, and I was firmly on the side of reproductive rights for people with intellectual disabilities. End of story.
As I experienced more of the world, gained a better understanding of the realities of life, and watched and listened to many stories from people experiencing difficult moral situations, a few black and whites became grey. One of those was this difficult subject. So when I saw what was on Sunday on Sunday night I was intrigued and nervous to see how this complex subject would be portrayed by the media. Very well, I thought.
I am not intellectually disabled, and I am not a parent of a child with an intellectual disability, so don’t have the experience and the understanding to presume to decide what is best for them, or make a judgement on this subject. I watched it with an open mind. I wanted to hear their stories and ponder the questions that the segment raised. And it raised a few.
- The reality is that not all people with intellectual disabilities will fall in love and live independent lives that include consensual sexual encounters. Many have impairments of a level that rule any kind of sex life and reproduction impossible, and that put them at high risk for sexual abuse. They are our forever children. We consent to surgery for our children – so should parents in this situation have the right to consent to this surgery?
- It was heartbreaking to see Eliza – a beautiful young lady whose quality of life has been impacted badly by menstruation. A girl who was toileting independently has been reduced to nappies and being changed by others. That must feel humiliating to a girl who clearly so loves to feel pretty. This beautiful girl is so confused, terrified and revolted by her own body function she is self-injuring and exposing herself in public. This operation may have her continent again, more in charge of her own body, happy, safe, and far less anxious. It clearly has nothing to do with her family being sick of changing nappies. To say that would be insulting. So – should she feel this way for the rest of her life because it’s banned? Should it be banned?
- The right to carry a child. Realistically again, these ladies are not going to be able to do this. In some circumstances carrying a child could put them at high risk of complications. I do kind of understand this one – I have the right to carry a child, yes – but that meant nothing when I needed a hysterectomy at 24 because of debilitating symptoms and irreversible infertility. What I was going through was distressing, and I could understand what was happening to me. Eliza and Jessica don’t even understand why it hurts. In these situations, why does the right to carry a child that will never be, trump the right to quality of life of the person actually living?
- Forcing someone to have a hysterectomy seen as an act of violence. Back in the day when it was commonplace, clearly. Again, we come back to consenting for our children’s operations. I don’t know about you but I certainly felt like the most horrible mother on the planet having to hold my son down along with 2 nurses to put him under for tonsils & grommets as he thrashed. Most of us have been there. But they needed the operation to fix something that was ruining their quality of life. Is this any different? And is the one-off surgery an act of violence and torture when compared to self-mutilation and terror a week out of every month for the rest of Eliza’s life?
- 7 year olds having hysterectomies. That’s not ok with anyone. There were issues with this many years ago as I learnt at that lecture, and there were many atrocities that took place with people with intellectual disabilities being sterilised. No-one wants that to happen again. So if we don’t ban, then how do we regulate? Would an evaluation system work? Like those used with other difficult ethical issues – with at least 3 independent medical and psychological sign-offs? There must be a process more robust than finding a private specialist to do the surgeries under the radar.
- Jessica is on hormone treatment after her period pain got out of control. This is another option – but not for all. And she has had to have multiple anaesthetics just to have that treatment. Which is really torture? For many women, disabled or not, using hormone treatment can put their lives at risk. Long term use can shorten a woman’s life due to strokes and other complications. It’s not as simple as putting your daughter on the pill.
I don’t think dignity and bodily integrity are necessarily exclusive, opposing things. In situations where it’s clearly of benefit to the person needing the surgery, dignity is reclaimed by a loss of bodily integrity. Would we have a problem approving that a person with intellectual disabilities having another organ or a limb removed due to medical issues? Getting a colostomy bag?
As abortion, euthanasia and other difficult issues have proved, bans lead to covert and underhanded activity to get around them. This has nobody’s best interests at heart. Things go wrong in these scenarios, and horror situations where parents/guardians get away with sterilisations for the wrong reasons flourish under these circumstances.
Eugenics – the word makes us cringe and think of Nazi Germany. From what I’ve researched, sterilisations of people with intellectual disabilities for the reason of culling potentially disabled babies happened until recently. It was a terrible practice and it has tainted what could possibly be a good thing for a few into an act deservedly labelled coerced and violent for all. Eugenics is an area of genuine concern. Are there ways of making sure this never happens again? Would a case by case basis using a system of checks and balances by multiple experts checked off by an independent commissioner be the best way to help these young ladies who, it seems, would have a far better quality of life than stay how they are?
This blog post isn’t me supporting sterilisation for people with intellectual disabilities. It’s some very tough questions that I am asking myself, and that you may be pondering too. As the IHC advocate said, it is ‘not a subject to be side-stepped’. These are difficult ethical issues that do not have simple solutions. Is a one-size-fits-all approach really in some girl’s best interests?
Is it possible that in certain circumstances, a hysterectomy will improve the quality of life, physically, emotionally and mentally, of young ladies for whom menstruation and its associated complications have them in genuine, overwhelming distress? And how should we as a society answer that distress?
I too watched that programme and don’t have an answer, although in this particular case I thought the parents should have been able to make the choice for their daughter. It is such a tricky area. I have never been in favour of abortion on demand, but I do of course believe there are times and places when women need and should have access to abortion, rape is one of them. I do not believe in euthanasia. We have to manage pain and miserableness for others better than we currently do. Life is life with all its tragedy, struggle, and joy. We cannot and should not just opt out when the going gets tough.
Rachael, I only caught a minute or so of Sunday’s programme around sexuality and intellectual disability, so can’t comment on its content. I do however want to make a couple of comments on your interesting article.
The first may seem minor, but to people with disabilities your use of the phrase “forever children”, in describing some of those in the programme, is unfortunate. The label is diminishing, disabling and downright inaccurate. People who are fifteen or thirty are not children. Physically they are adults and experience the same variety of physical instincts and yearnings that the rest of us do. Their understandings of these may differ from the majority of us but they are not children.
I’m deeply conscious here that I am talking about ‘them.’ I hate that, but that is what we do. We, the ‘abled’ think we know best and labelling people as children helps elevate us to positions of power. But frankly, we know bugger all about intellectual disability; not compared with those who live as people with intellectual disabilities in a society that devalues them. The thirty year old, who an expert labels as having the intellect of a five year old, has three decade of knowing what disability is, something the expert can only surmise about. In reality, experts are the bane of the powerless. Robert Martin, a great New Zealander with an intellectual disability, and a key figure in the negotiation of the UN Disability Convention, once told me how as a teenager he came to the realisation that he had no voice – “because they had taken it. The people who claimed they cared about me the most had taken my power.”
Don’t misunderstand me Rachael. The situations in the programme that you describe sound worrying. Nobody should suffer the pain and emotional torment you describe. Norms should not override the needs of individuals.
But at the same time we should not forget that current practice has grown from the terrible time, not very long ago, when young women with intellectual disabilities were routinely sterilised or forcibly injected with contraceptives because parents and professionals were convinced they knew best. We should not forget that it is only a generation since people with intellectual disabilities were punished for being sexual beings, because society deemed they should not be. What I am saying is that care needs to be taken around the issue you describe and those who live with intellectual disabilities, the people who really know (and there are plenty of them in our communities who have the expertise but who we choose to ignore) – these people need to be involved in the discussions.
The second thing I want to address is your mention of eugenics and your opposition to it. We have a rich history of it in this country. We persuaded and coerced generations of parents to give up their children, putting them into places that were, by the accounts of those who came out alive, fearful. Many were buried there, often in unmarked graves.
Today we don’t do that, but eugenics is not gone. New Zealand routinely tests for and aborts children who are deemed ‘imperfect’, most specifically children with Down’s. Robert Martin points out that the Nazis did the same thing.
My point about this? The issues around people with intellectual disabilities are profound. They point to the very basis of what we, as a society value. That the main stream media’s only story around the issues, in God knows how long is around menstruation, tells us much more about we, the audience, than about it does about ‘them’- people with disabilities. I don’t dismiss such a story but I do wonder how, removed from context, it becomes a vehicle to undermine the voices of people with intellectual disabilities. You Rachael, a caring intelligent person found yourself wanting to make choices that are not yours to make. Nor are they mine.
Let’s face it. People with intellectual disabilities are at the very bottom of the heap on every measure. They are poorer, die younger and more often victims of sexual and physical abuse than the rest of us. They remain mostly unseen and unheard.
Our job is not to assume that we can speak for them buy to help people with intellectual disabilities find and amplify their voices and thereby find a place beside us. I quote again from Robert Martin: “Yes I have an intellectual disability, but that does not mean my voice should not be heard. My story is the story of millions: people all over the world, who are denied humanity because they have an intellectual disability.”
Cheers, John
Hi Jono,
Thanks for your thoughts. I agree with you. I knew I was tackling a extremely difficult issue and did my best to ask questions of society rather than make decisions for people. I nor any of us have the right to do that.
I was and am still horrified and completely against the practices of the past. They were utterly unacceptable and must never, ever occur again.
What struck me about the segment was that there is clearly also some danger in banning options in certain situations.
So what then as a society do we do?
Hi Rachael
Thanks for your comment. You ask what we can do. I think that all we can do is keep talking and put the issues in front of people where we can.
So congratulations on your article and keep up the work.
It is terribly sad that people with intellectual disabilities remain largely invisible and their plight, on so many fronts, is unknown in the wider community. The media in particular fails these people and their families, who are in turn disabled through lack of support.
Best wishes,
Jono
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