“Walk In Our Shoes”: Four Corners (ABC TV) explores the issue of sterilisation of people with disabilities
On Monday 16 June, 2003 Four Corners (ABC TV) broadcast a program entitled “Walk in Our Shoes”. The Program explored the issue of whether, and in what circumstances, disabled women (and men) should be sterilised. The transcript of the Program, along with transcripts of interviews conducted for the program have been reproduced here, with permission of Four Corners (ABC TV). Copyright ABC 2003.
Does a woman with the mental age of a two-year-old have the right to bear a child? Or should she be stopped – for her own protection and that of the potential child?
Four Corners explores the fraught issue of whether, and in what circumstances, disabled women (and men) should be sterilised. In this emotionally compelling documentary, the people at the heart of the sterilisation debate – disabled people, their parents, their carers – speak with remarkable candour about their experiences, frustrations and dilemmas.
Producer Janine Cohen meets women who have been sterilised without their consent or even their knowledge, sometimes under the guise of an appendectomy. These women are young and middle aged. Today they rage against what they see as an abuse of their basic human rights. One 26-year-old woman with cerebral palsy – not an intellectual disability – is asked why she is angry about the hysterectomy her parents arranged for her in her teens. “Because I want to experience a period,” she says.
“They actually never chose – they didn’t choose not to have children,” says a disabled rights campaigner. It’s “as if you had your womanhood stolen,” says another. “It’s a power thing, a control thing… you know, these people are different so (society) needs to control them,” says another.
Talk to the parents of profoundly disabled women and you get a completely different picture. To them, it’s a matter of saving their children from their own actions, and preventing a traumatic upbringing for a potential grandchild. They see sterilisation as the only way out. “No mother in her right mind could ever wish anything like this on her child,” says Dot, whose daughter Trish had a hysterectomy at 15. “But it happened… it’s life, there’s hard decisions and you have to live with them. I have no regret because what I see now with Trish is a happy, vibrant little woman who’s got a quality of life… I’ve done this for her, to make her life – and I’ll answer to God for it.”
In the last two decades the legal pendulum has swung away from sterilisation in favour of the rights of disabled people to bear children. These days it is guardianship boards or the Family Court, not parents, who decide if sterilisation is in order. But experts tell Four Corners that the system is failing. A senior judge speaks out about parents and doctors evading the system by undertaking illegal sterilisations. In his language it’s criminal assault. A public guardian agrees that people are going outside the system. He also criticises child protection authorities for being over-zealous in taking children away from disabled parents. Another expert questions if children are being taken away to satisfy the needs of adoptive couples.
“Walk in Our Shoes” was first broadcast on ABC TV on Monday 16 June, 2003.
The Program Transcript
(FOOTAGE OF YOUNG DISABLED ADULTS DANCING AT DISCO)
JANINE COHEN, REPORTER: Is sex fun?
ANNETTE KALKMAN, CEREBRAL PALSY SUFFERER: Yeah.
JANINE COHEN: How much fun?
ANNETTE KALKMAN: Lots.
JANINE COHEN: People with disabilities meet at this disco every month, start to date and even get married. Some would like to have children, but should that choice be theirs to make?
DR DONALD BODEN, GYNAECOLOGIST: The authorities want it both ways. They make it difficult, on one hand, to sterilise these children. Then these children go ahead and have these babies.
PROFESSOR GWYNNYTH LLEWELLYN, FACULTY OF HEALTH SCIENCES, SYDNEY UNIVERSITY: I think the biggest difficulty is when we start to, as it were, play God and decide who should be parents or who shouldn’t.
(FOOTAGE OF TRISH KING, YOUNG INTELLECTUALLY DISABLED WOMAN)
JANINE COHEN: This woman has the mental age of a child. Does she have the right to be a mother? Tonight on Four Corners, the agonising dilemma for parents of children with disabilities – should they ever be sterilised?
DOT KING, MOTHER: I’d say to critics who would say that she shouldn’t have been sterilised, to walk in our shoes, to walk in Trish’s shoes, to know what it’s like to be her, and then maybe you would understand.
CHIEF JUSTICE ALASTAIR NICHOLSON, FAMILY COURT: Historically, the issue of sterilisation is…is a very unhappy one. If one goes back to the ’20s, there was a movement called eugenics which was a sort of a ‘Brave New World’ attempt to produce a…a better society, so-called, and that involved the rather horrifying concept that if someone had intellectual handicaps, they should be prevented from having children.
JANINE COHEN: For most of last century, sterilisation was commonly practised on women living in institutions. It was especially performed on women with mental illness, a mild or severe intellectual disability or even a physical disability. The policy was unofficial, so no figures were ever recorded.
LEANNE DOWSE, WOMEN WITH DISABILITIES: It comes back to the way we think about disability and, even in current times, that disabilities are a tragedy or it’s a medical problem or it’s a burden on the social system or health system.
JANINE COHEN: The practice of routinely sterilising the disabled continued through to the 1980s. In Kristine Nattras’s case, it was 1968. Did you know, at the time, you were being sterilised?
KRISTINE NATTRAS: No.
LEANNE DOWSE: Kristine has an intellectual disability, so she was somebody who went to a special school. On the day of her 18th birthday, she was doing some work experience at a local school and her father came to pick her up from school at lunchtime, which she thought was unusual, and said, “Come and pack your bags. You’re going to hospital.” She remembers being very frightened and not knowing what was happening to her. When did you find out that you’d been sterilised?
KRISTINE NATTRAS: After…after the operation was finished.
JANINE COHEN: So, no one told you at the time what was happening?
KRISTINE NATTRAS: No.
JANINE COHEN: Are you angry about that?
KRISTINE NATTRAS: Yep.
LEANNE DOWSE: I think that it was deemed that if she did have children, she would be unable to look after them.
JANINE COHEN: Do you like children?
KRISTINE NATTRAS: Yep.
JANINE COHEN: What happens when you see other people nursing children?
KRISTINE NATTRAS: Oh, I get a little bit upset kind of thing.
JANINE COHEN: Why do you get upset?
KRISTINE NATTRAS: Because I wish they were mine.
JANINE COHEN: 26-year-old Annette Kalkman has cerebral palsy, a condition that leaves sufferers with no intellectual impairment, but with severe difficulty controlling movement. It is not genetic.
ANNETTE KALKMAN: I have had a full hysterectomy.
JANINE COHEN: How old were you when you had a full hysterectomy?
ANNETTE KALKMAN: 14.
JANINE COHEN: Did you have a choice as to whether you had a hysterectomy?
ANNETTE KALKMAN: No.
JANINE COHEN: Who made that decision?
ANNETTE KALKMAN: My mum and dad.
JANINE COHEN: Why did they make that decision?
ANNETTE KALKMAN: Because they didn’t want me…didn’t want me to have a period.
JANINE COHEN: In recent years, passionate and well-educated advocates from the disability movement have lobbied against sterilisations. Dr Tom Shakespeare is a British expert in bioethics.
DR TOM SHAKESPEARE: Clearly, there are medical consequences and that’s why people should be able to consent for themselves. So, they should be able to wait till they’re 18. Why…why sterilise a child?
JANINE COHEN: Another advocate is Francis Vicary, who has cerebral palsy. She also has a Masters of Letters and an English literature degree specialising in Greek translation.
FRANCIS VICARY: It’s a power thing. I really don’t like the idea. I object wholeheartedly to anyone else making choices about a woman, about a woman’s body, because I think even women with disabilities have the ability to know what’s going on in their body.
JANINE COHEN: Why should a woman with a disability not be sterilised?
ANNETTE KALKMAN: Because it…it takes their choice away.
JANINE COHEN: It takes their choice away?
ANNETTE KALKMAN: Yes.
JANINE COHEN: What choice is that?
ANNETTE KALKMAN: Having kids.
JANINE COHEN: Looking back now, how does that make you feel, the fact you’ve had a hysterectomy?
ANNETTE KALKMAN: Angry.
JANINE COHEN: Why?
ANNETTE KALKMAN: Because I want to experience a period.
LEANNE DOWSE: We know that there are huge emotional consequences. People feel violated, they feel that they’re not a real woman. These are the things that people have told us when they’ve spoken about their experiences. They feel very alienated from other women. They have difficulty establishing relationships with men. So, you know, the consequences are enormous.
JANINE COHEN: What would you say to people, to parents out there, who are thinking of sterilising their children?
ANNETTE KALKMAN: Stop and think about it and what they want.
JANINE COHEN: In 1992, a High Court ruling determined that no parent had the right to decide to sterilise their child. Since that ruling, a decision can only be made by the Family Court or a Guardianship Tribunal.
DOT KING: Trisha would be about a three-year-old level with some issues, maybe a little bit higher in others. With the hygiene side of it is a major issue here, and the fact with her period, she’d be saying to me, you know, “I’m bleeding, Dot, I’m bleeding.” And she was afraid and, of course, couldn’t understand it, wasn’t able to handle it when she got her period.
PETER KING, FATHER: Trishy would leave sanitary napkins all around the place, could be in the bathroom, could be up the hallway, uh…in the laundry.
DOT KING: I tried to get medical help in that area, and I couldn’t, and I eventually went to see my orthopaedic specialist. And he said that he knew of a doctor who might be able to help me. When I took Trishy to the specialist at a Sydney hospital, he said that, uh…she could have her tubes just cut and tied, and that would prevent any pregnancy. “But,” he said, “with this heavy period, there’s not a lot we can do.” He said, “Why don’t you go home and talk to your husband and your family and think about a hysterectomy?”
PETER KING: I thought, well, if ever… she was ever to fall pregnant, we thought that it would kill her, because of her gross abnormalities.
JANINE COHEN: Trish’s disabilities include a heart defect, chronic scoliosis and a severe intellectual disability. She was secretly sterilised in hospital. The operation was not yet found to be illegal, but hysterectomies on teenagers were becoming publicly unacceptable. Doctors also feared litigation in the future from the children they sterilised.
JENNY KING, SISTER: The doctor booked Trish into hospital under my mother’s name and I know this would have created a lot of stress and tension for my parents at the time.
JANINE COHEN: So, to the outside world, it was you having the hysterectomy?
DOT KING: Yes. But no one questioned me. No one, none of the nurses, no one. We were in a private room, we were on our own, and I stayed with her and then I brought her home and nursed her and she…she was fine.
PETER KING: Trish was 15 years old when she had the operation.
DOT KING: It’s something we have to do behind closed doors because people don’t understand. Nobody would say, “Sterilise all handicapped young women,” not in a million years, but with some medical problems it’s necessary.
JENNY KING: Trisha being sterilised wasn’t about Mum and Dad, it’s always been about Trish. My parents’ relationship with Trish is fabulous. Mum and Dad are two of the most loving, caring individuals I know.
DOT KING: No mother in her right mind would ever wish anything like this on their child, but it happened, and you can’t live with rose-coloured glasses. It’s life, and there’s hard decisions and decisions you have to live with and I have no regret because what I see now with Trish is a happy, beautiful, vibrant little woman who’s got a quality of life.
JENNY KING: Mum has a huge amount of guilt – and I know Dad does too – but I feel it from Mum a lot, that these decisions that are made for Trish are very painful.
JANINE COHEN: What sort of mother are you?
DOT KING: I’m the best I know how to be. I can only be me and I know I have loved her and she’s my girl… (Voice breaks) My daughter. Sorry. I want the best for her. I want her to have a quality of life equal to my other two children. So…so I’ve done this for HER, to make her life, and I’ll answer to God for it.
JANINE COHEN: Since the High Court decision, the number of recorded legal sterilisations has dropped dramatically. Only 17 have been approved in the last 11 years. Gynaecologist Dr Donald Boden fears the pendulum has swung too far.
DR DONALD BODEN: But sometimes when laws are introduced er, it’s…it’s a, um…it’s something that’s done quickly and then they don’t look down the track in 10 years at what the repercussions may be, and I think that this is what’s happening now.
(FOOTAGE OF LAURA FERRIS, YOUNG INTELLECTUALLY DISABLED WOMAN)
SUE FERRIS, MOTHER: Laura was born in 1990 and, er, she was beautiful. She was the perfect baby.
STEPHEN FERRIS, FATHER: She was absolutely normal. In fact, we felt she was advanced for her age. She was counting to 10, saying the names of family members. Uh, yeah, she was very bright.
SUE FERRIS: In October 1992, she had a Hib meningitis vaccination.
STEPHEN FERRIS: Within days, we noticed a change. Uh, she became unresponsive. Um, she wouldn’t take notice of other people around her and she just gradually lost her speech and retreated into her own world.
SUE FERRIS: It was about September 1993 that she was diagnosed with childhood disintegrative disorder. We were told that it’s like presenting with mild to moderate autism. Laura, now, is functioning at about the 14-month level. Basically we have to follow her around everywhere. She doesn’t understand road rules. She can’t toilet herself – she’s timed rather than trained. She’s bowel incontinent at night. Um, she’s quite hyperactive. Um…she basically needs prompting to do any normal activities. Laura’s tantrums can be very violent. Um, she becomes like a wild animal – she screams, bites, scratches, whatever she can do. She’s just completely out of control.
STEPHEN FERRIS: She can be a happy child but it’s a very fragile sort of happiness. Um, just anything can turn that into her being really unhappy and agitated and violent and self-injurious. She can very easily become upset and that can lead to ripping her clothes off – as has happened before – not just on one occasion, but she can decide that she doesn’t want to wear clothes at all. We went to the Guardianship Board in August last year and, then, Laura was 12. We were applying for hysterectomy for Laura and we wanted that because we felt that she can’t handle menstruation by herself.
SUE FERRIS: If Laura’s menstruating, there’s a total lack of dignity. There’d be blood everywhere. It’s the last thing in the world that you’d choose for your child – to sterilise. It’s the last thing. You…again, you know, you have to go through that grieving process again. It’s accepting that your child is so disabled that they’re never going to be able to cope on their own.
STEPHEN FERRIS: The first several of those professionals that we saw all supported what we wanted to do with the application. The Guardianship Board organised for the gynaecologist from Melbourne to come and see Laura. It took us by surprise that they were asking a further specialist for an opinion. The specialist the Guardianship Board turned to was Melbourne gynaecologist Dr Sonia Grover.
DR SONIA GROVER, GYNAECOLOGIST: I recommended against a hysterectomy for Laura because this was being proposed pretty much as a first option. We did not have evidence that menstruation was a problem. We had very clear evidence that Laura has got significant behavioural troubles so that removal of clothing and dislike of clothing, and therefore the potential dislike of menstrual pads are all big issues. But there are some very good ways of trying to make menstrual loss nearly zero.
SUE FERRIS: I don’t think they looked at the case on its merits. I think they decided first and I think they had their own opinions and while they listened to us, I don’t think they heard what we were saying.
ANITA SMITH, PRESIDENT, TASMANIAN GUARDIANSHIP BOARD: I think it’s endemic in the legal system that if people don’t get the decision they’re seeking at the time that they might be unhappy with that decision and feel frustration about that process.
DR SONIA GROVER: I recommended to Laura that we could – or Laura’s family – that we could either use the pill continuously, or the other option was to use a levonorgestrel intrauterine system which should reduce her menstrual loss by 98%, 99%.
SUE FERRIS: I think with Dr Grover, she’s sort of thinking that a hysterectomy is the most invasive, um, thing that would stop the bleeding. Um, to us, it’s equally invasive, or if not more so, to have her on medication, um, for years and years and years to stop that bleeding.
ANITA SMITH: People must have dreadful problems in managing some of these issues on a day-to-day basis – or a month-by-month basis… But to remove a healthy organ from someone and to remove, in essence, a function which is not just a messy and inconvenient function, it’s part of being a woman, it’s part of being an adult, and to take that away is…can be seen as a fairly serious breach of human rights.
STEPHEN FERRIS: For Laura, we try to see things through her eyes as parents. As far as we can tell, she obviously won’t want the operation. She won’t want the period after that when she has to recuperate. But looking at her whole life, in the long term, she will…we feel, would welcome the greater freedom it would give her.
SUE FERRIS: I feel that we are Laura’s parents – um, I think critics, um… If they haven’t lived with a child, they don’t know the child, they don’t know the history of the child.
DR SONIA GROVER: I agree that they’re living with her and they’re doing a fantastic job caring with her and I have my utmost admiration for them. My expertise is in offering families and their young daughters the best care in terms of menstrual and contraceptive needs. And I have got considerable experience and my team has got considerable experience in resolving difficulties using non-surgical mechanisms.
JANINE COHEN: Non-surgical methods are seen as temporary by some parents whose greatest fear is what happens to their children after they are gone.
STEPHEN FERRIS: We wanted a solution to Laura’s problem with menstruation which was a long-term one, which didn’t involve the situation where we’re relying on somebody, years in the future, after we might be either no longer around or no longer able to take responsibility for Laura.
SUE FERRIS: I dread to think what will happen to Laura later on, when we’re not there. I guess it’s one of those things that you’re too scared to think about. Yeah, I’m just…the future is a very scary thing for her.
JANINE COHEN: Some parents, frustrated by the system, are now seeking out illegal sterilisations or finding ways to get around the system.
(FOOTAGE OF LAURA ALLEN, YOUNG INTELLECTUALLY DISABLED WOMAN)
ANNE ALLEN, MOTHER: Laura is nearing 18 – she’s 18 in December. And she was born with cerebral palsy, a severe intellectual delay and epilepsy. Her intellectual age would be from one to two years old. She needs help in every aspect of her life. When she was menstruating, just hygiene-wise, it was just horrific. I would shower her twice a day, if not more. You could wake up in the morning and think, “We’ll have a really good day and that’s fine.” And I’ll go into Laura’s room and…it just, um…yeah, it was just horrific. Sometimes we’d have blood everywhere and, you know, she didn’t know any better. Her mood swings were right up and down. They, um…she could be fine one minute and the next, be just uncontrollable, crying and sobbing. I suppose, in the back of our mind, pregnancy was always going to be a factor that we never wanted to face. We know somewhere down the track that we’re not always going to be here, that Laura will at some time have to go into care. And, yeah – pregnancy would just be horrific. We were living in the United States for about three years. Um, we basically moved there when Laura was 13 and she had a hysterectomy when she was 15. One very, very big thing that we found, and it was actually during the surgery – that Laura had and was riddled with endometriosis. And that was a lot to do with why Laura had the mood swings and she was in incredible pain. She was just really happy until the age of 12, when she started menstruating. But since the hysterectomy, she’s back to her… She is just so happy. For Laura to have a hysterectomy in Australia would be basically impossible.
JANINE COHEN: You’d have to break the law?
ANNE ALLEN: I… Yeah, we’d have to break the law. And I don’t… Yeah. I’ve got many friends that have been down the line and been knocked back, some friends going through the process at the moment, some friends that it will come up in the next couple of years. The motivation for a parent to get an illegal sterilisation would be they’re doing the best for their child. Health and hygiene would be the utmost. And they would be desperate. And, yeah, I’d go down that track if we were not able to get a hysterectomy for Laus in the States. If we were going through what we did in the States in Australia, I’d be looking at that. I’d be trying ways to find out, to get some help.
JANINE COHEN: Do you think there’d be sympathetic doctors out there?
ANNE ALLEN: Yep. (Laughs gently) There is.
DR DONALD BODEN: I suppose frustration leads to all sorts of avenues. And I can understand how they go and would try and get an illegal sterilisation carried out. Yes, I can.
JANINE COHEN: What do you think motivates a doctor to help a family in that situation?
DR DONALD BODEN: Well, I think it’s empathy with the situation.
JANINE COHEN: The Chief Justice of the Family Law Court, Alastair Nicholson, is a strong advocate for the rights of the disabled child. He suspects people are subverting the law.
CHIEF JUSTICE ALASTAIR NICHOLSON: I have observed a fair degree, in the medical profession, of perhaps…antipathy towards the concept of requiring approval for these procedures. Frankly, I’m very surprised at the limited number of applications made in this area.
JANINE COHEN: And that, in a sense, sends off warning bells?
CHIEF JUSTICE ALASTAIR NICHOLSON: I think there are lessons to be learned and warnings to be heeded in this regard. And I think that it is an area that hasn’t really had enough public attention. It is criminal assault. And it’s also assault that could well give rise to actions for damages in future.
ANNE ALLEN: I don’t see it as criminal assault. We’re doing the best, the best that we can try and do for our kids. To the people that make that judgment, that say that these children shouldn’t be sterilised, come and live with us – not now, but before. They have just got no idea, absolutely no idea. A day-to-day, month-to-month life in…with a disabled child, is just completely different.
CHIEF JUSTICE ALASTAIR NICHOLSON: One of the difficulties, when you consider the issue of whether parents are or are not the best people to decide, first of all, is the law. And the law is clear that…and clearly takes the view that they’re not. Most parents are absolutely anxious to produce the result that’s best for their child. They consult with doctors and teachers and others. And I would have thought that in many cases, their decision would be a sensible one. It’s not an objective decision, though. It’s not a decision that’s taken, necessarily, with a full appreciation of the implications.
JANINE COHEN: The disability lobby say if someone can’t give consent, then an operation, a sterilisation, should never be performed.
ANNE ALLEN: But Laus is…uh, Laus is a developmental age of one to two. She will never understand. She will never understand the question. She can’t understand why she’s gone through menstruating. Um…we, as parents, are her voice. And we try and do… We DO the best for Laura.
JANINE COHEN: Laura, do you know what a hysterectomy is?
LAURA ALLEN: Um.
JANINE COHEN: Do you know what menstruation is?
LAURA ALLEN: Bah.
JANINE COHEN: Although the law has swung behind the disability lobby, Four Corners has made contact with families who have had their daughters sterilised illegally. They would not come on camera for fear of prosecution.
JULIAN GARDNER, VICTORIAN PUBLIC ADVOCATE: The law is set up to protect a very vulnerable group of people in society, those with disabilities whose decision-making capacity is impaired. The law provides for a system of approving these medical procedures for sterilisation and the law is being flouted. And to that extent, it’s not working.
JANINE COHEN: Why isn’t it working?
JULIAN GARDNER: Because people are finding ways to have sterilisations carried out outside the law.
JANINE COHEN: So they are finding sympathetic doctors?
JULIAN GARDNER: Yes.
JANINE COHEN: Has there ever been a doctor convicted?
JULIAN GARDNER: I’m not aware of a case.
FRANCIS VICARY, QUEENSLANDERS WITH DISABILITY NETWORK: I think if we can say there’s illegal operations happening, what are we doing about them? Why aren’t we prosecuting? I mean, if they are illegal, then let’s do something about them. It’s only when you prosecute that people change their attitude and stop doing things that are illegal.
JANINE COHEN: Why do you think no-one has ever been charged?
FRANCIS VICARY: Because it’s people with disabilities. They’re less valued.
(FOOTAGE OF DISABLED COUPLES DANCING TO SLOW MUSIC)
JANINE COHEN: This is a disco in Sydney for the disabled. Many couples meet here and form relationships.
DR TOM SHAKESPEARE: I did a research project about the sexual lives of disabled people. And there was an anecdote about a couple who were kissing – a disabled couple who kissed in a supermarket. Somebody came up and said, “Do you mind? It’s bad enough that there are two of you.”
FRANCIS VICARY: It’s people with disabilities expressing power and expressing, um, lust, and people just find that sort of confronting and dangerous. But I do it. I…I purposefully, when I’m out, I show affection to whoever I’m with because I know that people find it a bit disturbing.
JANINE COHEN: Have you had sex before?
ANNETTE KALKMAN: Yeah.
JANINE COHEN: So you have the same sexual desires as any woman?
ANNETTE KALKMAN: Yeah.
JANINE COHEN: Could you tell me a bit about why it’s important to be able to be sexual?
ANNETTE KALKMAN: Yeah. It’s part of womanhood. It’s part of womanhood.
JANINE COHEN: Part of womanhood?
ANNETTE KALKMAN: Yeah.
JANINE COHEN: Is sex fun?
ANNETTE KALKMAN: Yeah.
JANINE COHEN: How much fun?
ANNETTE KALKMAN: Lots.
(FOOTAGE OF MATTHEW RUSHFORD, YOUNG INTELLECTUALLY DISABLED MAN)
DEBBI RUSHFORD, MOTHER: Matthew started working at the sheltered workshop in about July last year, I think it was, and Rhonda was already working there and that’s where he met her. When Matthew started telling me that he had a new girlfriend, it was very interesting. It actually took Matthew two weeks to be able to remember what Rhonda’s name was after he’d met her. He kept saying, “My girlfriend, my girlfriend. Um, what’s her name?” As soon as I realised it was looking a bit more serious, I suggested to Matthew that if he thought he was likely to have sex with Rhonda he should make sure he had condoms, and asked him did he remember about using them. “Yes, yes, yes, you’ve told me.” So I guess I was a bit surprised when it turned out that she was pregnant. I got home and he said, “Aren’t you happy, Mum?” And I said, “Well, not really, Matthew.”
JANINE COHEN: Why wasn’t she happy that Rhonda was having your baby?
MATTHEW RUSHFORD: Oh, because I forgot wearing a condom.
JANINE COHEN: You forgot to wear a condom?
MATTHEW RUSHFORD: Yes.
JANINE COHEN: How did you forget?
MATTHEW RUSHFORD: Um… Oh, um…I don’t know. I forgot buying the condom and forgot putting it on.
DEBBI RUSHFORD: I don’t think that there’s any link between the act of intercourse and a life-long commitment. My other worry is that because these kids are totally indiscriminate – socially and sexually – that it’s perfectly possible that there are lots of other children about that we don’t know about, that Matthew’s fathered other children.
FRANCIS VICARY: What’s the difference between him and other men who do that? You know, is there a difference? Are we saying that because he has a disability, he has to be more responsible than other men?
JANINE COHEN: Some people might say that people with intellectual disabilities shouldn’t have children. What would you say to that?
RHONDA ALLEN: Um, I don’t know.
JANINE COHEN: Are they right or wrong?
RHONDA ALLEN: Um, probably half. Half and half.
JANINE COHEN: So sometimes it’s OK and sometimes it’s not?
RHONDA ALLEN: Yeah.
JANINE COHEN: Do you think that you and Matthew should have had a baby?
RHONDA ALLEN: Um, I don’t know.
JANINE COHEN: Do you think you should have had a baby, Matthew?
MATTHEW RUSHFORD: I don’t know.
DEBBI RUSHFORD: Matthew has an eight-year-old brother who lives here at home as well, and I’ve often thought that they were on a par, both intellectually and socially, at each stage of their development. When they were five…when Jake was five, it was like having two five-year-olds in the house, quarrelling and arguing. As Jake has got older it’s been wonderful, because Matthew plays with him a lot. But they also fight a lot. And it always sounds a little absurd to have a 28-year-old saying, “Mum, Jake’s hitting me,” or, “He’s fighting. He’s annoying me. He won’t leave me alone.” Matthew wants to stay living at home. We’ve suggested that they might like to try living together with the baby with a lot of help, but none of them are really very interested. They seem to want to stay at their respective homes.
JANINE COHEN: Can you see anything wrong with Matthew having more children?
JACKIE ALLEN, RHONDA’S MOTHER: Not with Matthew, I can’t.
JANINE COHEN: So you think Matthew should be allowed to have more children?
JACKIE ALLEN: If he wants to.
JANINE COHEN: Why do you think he would make a good dad?
JACKIE ALLEN: I think it is up to the person.
JANINE COHEN: But what qualities do you think Matthew has got that would make him a good dad?
JACKIE ALLEN: Oh, he has good qualities.
JANINE COHEN: Like what?
JACKIE ALLEN: Mmm, well, he loves my daughter. And he’s generous.
DEBBI RUSHFORD: I’ve talked to Matthew about sterilisation at some length. I’ve tried to explain to him that it doesn’t stop him being able to function sexually, but it simply stops him being able to father any children. For me to have Matthew sterilised against his wishes, I’d have to go to a tribunal. I’d have to have specialists and a GP appearing. They have to appear in person, they’re not allowed to send in written submissions, and it’s an extremely costly exercise, and there is no guarantee that it would succeed.
PROFESSOR GWYNNYTH LLEWELLYN, FACULTY OF HEALTH SCIENCES, SYDNEY UNIVERSITY: I’ve been working with parents with intellectual disabilities for around about 15 to 20 years. And our work is focused in a number of areas. One, in helping to understand how we can support their parenting – in other words, teaching parenting skills. I think the biggest difficulty is when we start to – as it were – play God and decide who should be parents or who shouldn’t, then we’re taking on particular responsibilities and we do not know what the outcome of those responsibilities might be. I don’t think there are easy solutions in sterilising adult men. I don’t think that’s going to be a solution which will satisfy either the man himself, his partner, female friend, or the parents in the long run.
DEBBI RUSHFORD: I very strongly believe that everyone needs their rights protected, and I certainly don’t think there should be indiscriminate sterilisation of people who are intellectually disabled, but I think there’s got to be a place for reasoned consideration that’s not financially out of reach of most people.
JANINE COHEN: According to a study in NSW by Professor Llewellyn, children of parents with an intellectual disability are removed at twice the rate of others.
PROFESSOR GWYNNYTH LLEWELLYN: It’s incredibly disturbing. We have numbers of stories where parents talk about clearly their grief, their lack of understanding, their disbelief about what’s happened. And, of course, the first question they ask is, “Well, when is my child coming home?”
JULIAN GARDNER: One of the ongoing concerns of the Office of the Public Advocate here in Victoria has been the overreadiness of child protection workers to remove from parents with a disability their children, rather than trying to understand the nature of their disability, trying to understand what further education, what physical supports could be put into that home to assist them to be a good parent.
PROFESSOR GWYNNYTH LLEWELLYN: It makes you start to wonder if there isn’t some underlying – if not recognised – motive that here are children who are potentially available for adoption.
JANINE COHEN: So they’re potentially taking some of these children away to give them to couples who can’t have babies?
PROFESSOR GWYNNYTH LLEWELLYN: Well, of course, we don’t know that this is the case, but it does make you wonder when these children are removed very young.
JANINE COHEN: Brady is only a few weeks old. It is too early to know if he will inherit a disability, or whether he will continue to be raised by his natural parents.
DEBBI RUSHFORD: Brady’s future is sort of pretty up in the air, I think. Children need so much stimulation growing up, of all sorts. They need to be put in a position where they’ll have every possible opportunity to learn and grow as best they can. Um…I’m not altogether sure that Brady will get that.
SUE FERRIS, MOTHER: I really believe that the parents just have no say. We have no rights. We have to look after the child. But, we…you know, if we feel that something like this would make the child’s life better, we’re just ignored.
LEANNE DOWSE: What we do know is that sterilisations probably are happening to younger and younger women – young girls, essentially – young women before they begin to menstruate. They are women who are potentially voiceless. We will not ever hear from those women.
DOT KING: I’d say to critics who would say that she shouldn’t have been sterilised to walk in our shoes, to walk in Trish’s shoes, to know what it’s like to be her, and then maybe you would understand.
Interview with Chief Justice Alastair Nicholson
Justice Alastair Nicholson, Chief Justice of the Family Court of Australia is a strong advocate for the disabled. He has strong views about the illegal sterilisation of young women with intellectual disabilities. Justice Nicholson was interviewed in Brisbane on Monday May 12, 2003. The following is an edited interview transcript. Due to the possibility of mis-hearing, the ABC cannot vouch for its accuracy.
When and what was Marion’s case?
Marion’s case was one of a number of cases that came to the Family Court in the late 80s early 90s and it involved an application to the court for permission to carry out a sterilisation procedure on the girl we named Marion. It came to the court in circumstances where one judge of the court had ruled that it was a matter for the parents to consent to these procedures and no one else. I had taken a different view in a Victorian case and this case came on in Darwin and because of the diversion of opinion, I stated a case to the full court, which is a court of three judges to hear it. That court, which included myself was somewhat divided again about what the appropriate course was and I maintained my view that it required a court’s permission for sterilisation to proceed and that went to the High Court which I think it was one descent. The High Court agreed basically with the view that I’d expressed and from then on the law effectively has been that a court’s consent is required to perform an invasive and non-therapeutic operation which covers sterilisation. It’s been regarded as covering change of sex operations as well so it’s a very broad principle.
So in many respects, you were one of the driving forces behind Marion’s case going to the High Court?
Well I don’t know that I was a driving force because I wasn’t driving anything but the cases came before us and the view that I was expressing was at odds with some other views – which is legitimate enough – and that’s the sort of circumstance on which an appeal takes place.
And why did you feel that way?
There were some quite significant Canadian and English decisions. One, the English decision from the House of Lords, which supported the view I’d taken, and accordingly it seemed to me that the law was pretty clear in that regard in other countries and we were dealing with virgin territory as it were in Australia as far as the law was concerned.
So what has been the significance of Marion’s case?
Well it’s very difficult for me to answer that. There are a number of possible outcomes. I think on one view it may have operated to inhibit unnecessary sterilisations and I hope that’s the case. There have been subsequent pieces of litigation. Some of the states, certainly NSW and South Australia have boards that deal with these issues and there was a NSW case which again went to the High Court which related to the powers of the Family Court vis a vis the NSW board and the High Court held really that in that case the board had jurisdiction if no application was made to the Family Court but that once an application was made to the Family Court, the Federal jurisdiction overrode the state.
So could you just spell out for us what the legal situation was prior to Marion’s case?
Well the legal situation prior to Marion’s case in Australia was virtually that no one really knew what the appropriate course was take in these circumstances and I think the English and Canadian cases which were comparatively recent sparked off some consideration in Australia of what the law was. I think prior to that time it’s clear that sterilisations proceeded purely on a decision of parents and medical advisers and in fact that was the situation in England too, until probably the late 70s when in one case a school teacher became very concerned about a proposal to sterilise one of her pupils and as a result of that, the matter went to the High Court in England and later on there were further cases that went there.
We spoke to one parent who prior to Marion’s case took her child, her teenage 13-year-old daughter to hospital for a sterilisation and the doctor admitted the girl under the mother’s name knowing that this wasn’t the correct situation. Legally we can’t work out why he would have done that if there had of been no legislation prior to the case that.
Well, there may have been at least some concern, I mean the doctor may well have heard of some of the English and Canadian cases in this area and there were American cases too.
So a concern for litigation down the down the track?
I think it would have been a concern for litigation. I can’t comment of course on the particular circumstances.
I notice in one of your papers you said Marion was a 14-year-old teenager with a severe intellectual disability and a lack of capacity to give or withhold consent, and that the procedure was sought to prevent pregnancy and menstruation with its psychological and behaviour consequences. Can I just get you to explain that to me again?
So far as the identify of Marion, she was a young girl who to outward appearance, I mean physical appearance – you wouldn’t have been aware of any sense of intellectual disability – but I did see her and I did have a conversation or rather an attempt at a conversation with her in the presence of her parents and basically she had severe – it was quite obvious – severe intellectual disability. The issue in the case was between the parents who wanted the procedure authorised, and the Northern Territory department of Health I think it was, who were opposed to the procedure so that really was the setting in which the issue was ventilated.
Could you explain to me since Marion’s case how authorisation may only be given if a court is satisfied that the procedure is the step of last resort?
Yes well that’s really the issue of sterilisation is a step of last resort and the High Court made that very clear as I’d hope we had originally, but the High Court made that clear both in Marion’s case and in the subsequent NSW case that I referred to and it is a step of last resort. It’s something that should obviously only be done in circumstances that really call for it. The difficulty of course is the determination of what those circumstances are and opinions can legitimately differ about that. Courts can only act on the expert evidence that’s given before them, although we have been careful to insist that it’s not just a matter for the parties to put that evidence, the court will seek its own evidence if it’s unhappy with the material that it has before it. So it’s a very serious decision. There are some that say that – in fact one of the dissenting views in the High Court was that no one could take that decision including the parents – so it’s obviously an area of great emotion and difficulty.
If I can just take you back historically well before Marion’s case in the 40s, 50s and 60s, it’s thought that people were sterilised indiscriminately, in institutions and homes. Can you tell me a bit about the historical perspective?
Historically the issue of sterilisation is a very happy one. If one goes back to the 20s, there was a movement called eugenics which was sort of a brave new world attempt to produce a better society and that involved the rather horrifying concept that if someone had intellectual handicaps, they should be prevented from having children. That was practiced in the US for quite a long time through the 20s. It was later adopted with some enthusiasm in Nazi Germany and then later on it became discredited, fortunately. But I don’t think that any real safeguards were put in place following on from that really, until the cases that we’ve been discussing in Australia at least in the late 80s. It’s not a very happy record. There were UN declarations on the rights of the disabled which were referred to in Marion’s case, and that attention had started to be given to it through the 40s and 50s but I believe in this country not very much attention.
So like America, we sterilised indiscriminately in institutions and homes in those early years?
Well it’s difficult for me to say precisely what did go on but I can say in terms of institutions and homes throughout that period, that there was no real check upon it other than the check provided by the medical profession if they took the view that they should not perform the procedure. I’ve no doubt that from time to time that happened, but it may well be also that it was possible to find compliant members of the profession who would not ask the questions and would have proceeded with that treatment.
And of course we still have compliant members of the medical fraternity don’t we?
I suppose any profession and any organisation has people who take different views to others and perhaps less rigid views than others and perhaps issues of principle are sometimes forgotten.
Just post Marion’s case and since the law, can I just ask you, why is it that parents aren’t always the best people to decide on the future of their children in terms of sterilisation?
One of the difficulties when you consider the issue of whether parents are or not the best people to decide first of all is the law and the law is clear – it takes the view that they’re not. It’s a terrible situation though that parents are put in when they when they’re faced with decisions of this sort. Most parents are absolutely anxious to produce the result that’s best for their child. They consult with doctors and teachers and others and I would have thought in many cases their decision would be a sensible one. It’s not an objective decision though, it it’s not a decision that’s taken necessarily with the full appreciation of the implications and I think for that reason there’s a validity in having a further check and also some parents are not as responsible as the vast majority that I’m speaking about and particularly where children are institutionalised, that they may be persuaded to agree to a procedure for reasons more suited to the convenience of the institution than as a matter of principle. And yet they may be quite unaware of that in agreeing. So there are a number of difficulties it seems to me that stand in the way. But of course the courts or the tribunals do take the views of parents very strongly into account and they aren’t simply ignored in this sort of process.
Could you just explain to me what occurs in each state in respect to applications for sterilisation? When do they go to a guardianship tribunal as opposed to the Family Law Court?
Well it’s up to the person who makes the application in states where there is such a tribunal. They can choose the tribunal if they wish, they can choose the court, but basically there’s no particular pattern. There are some states that don’t have such a tribunal, in which case the court would be the only source for it but I’d be open to correction as to which at this stage, because it’s a while since I’ve had a look at the particular point. But if someone applies to the court, then the court’s jurisdiction overrides the tribunal.
Following Marion’s case, there’ve been widespread calls for uniformity between the state jurisdictions and the family court. Do you think that’s something that needs to be looked at?
Well I would always favour the concept of getting a uniform approach across the country to issues of this sort, whether it be standardising state tribunals in the area or by standardising procedures in this court. It’s sometimes seen in this court that we in some way encourage an adversarial outcome in cases of this sort but nothing really could be further from the truth. To give an adversarial situation, you’ve got to have adversaries and whether it’s a tribunal or a court, if there is a significant disagreement about what should happen in a particular case, then there’s going to be some hearing and some method of determining it. There may be better methods than those provided by the court, but on any view, you can’t assume that these matters can be decided without a degree of conflict or dispute.
Ten years ago at the world congress on family law and children’s rights, you said the protection of children and intellectually disabled was better left to the courts than the tribunals, why?
Well basically because I have some faith in the court system and I said some years ago that I felt the issues we’re discussing is better left to the courts. It’s not to say that tribunals can’t determine these issues, but I think courts have a much greater degree of independence than tribunals and I think tribunals after all are really appointed usually for short terms and they may well be appointed for the purpose of implementing government policy, whichever way it may be. Courts don’t implement government policy and, it seems to me that’s a fairly important aspect of it but by the same token I think if courts are going to operate in these areas, they need to be properly equipped to do so. We have endeavoured in relation to these matters to simplify our procedures so that they can be dealt with promptly and effectively and we have, where they’ve come forward, attempted to get judges who have a particular interest in the matters to hear them so that the judge will in effect case manage the matter through so it’s not necessarily a more daunting prospect in a court than it is in a tribunal.
Some families say they can’t afford to go through the Family Law Court, it’s too expensive.
Well many people can’t afford it. If there’s a dispute, many people can’t afford to go through a procedure, whether it’s a court or a tribunal. I would be concerned in these matters about legal aid limitations that have been imposed because probably at the time I was speaking 10 years ago, legal aid was much more liberally available to people than it is now, but they’re still going to need some sort of assistance, whether it’s if there’s a dispute, whether it’s in a court or a tribunal.
So is it too expensive?
I think that any disputation is expensive, whether it’s too expensive depends on the issue and the circumstances of the people who are involved. But I would much rather prefer to see a much more liberal system of legal aid generally than we have in this country at the moment.
Drs Brady and Grover in their research found that the Family Court was far more likely to approve an application for sterilisation. They found that 90% of the applications to the Family Court were approved whereas only 53% were approved in tribunals. Can you explain why that might be the case?
Yes I think I can because it was coming off a very small base in relation to the courts and I think some of the applications came to the court where people were unhappy with the approach taken by tribunals which may have been more policy-driven than dealing with the individual circumstances of the case. But I think also that the family court decisions tended to be cases which were very much on the extreme side of the ledger and certainly any that I’ve been associated with didn’t ever fall into the category of there being any real concern about whether it was about the level of intellectual incapacity of the child. There were concerns of course and there’s still arguments over whether that can be managed in a better way and certainly we were very conscious – I have been and other judges have been – of the evidence that’s given in that regard.
I just want to take you to another subject and that’s the issue of illegal procedures. Brady and Grover in 1997 estimated there were 1000 procedures that weren’t approved since Marion’s case and only 17 have been approved, but since then those figures have been seriously questioned. Anecdotally do you have any sense of whether there are illegal procedures happening?
I don’t have any sense of it except that I have observed a fair degree in the medical profession of perhaps antipathy towards the concept of requiring approval for these procedures. I can’t take that further and say that therefore translates into the illegal procedures.
The Victorian Public Advocate said that that he believes there’s a number of illegal procedures happening and because of that he thinks that the system of tribunals and courts are clearly not working.
Well first of all you’ve got to know whether that’s right or not and it may be right, I just have no means of knowing. I’ve been surprised at how few applications are made but what does that mean is it’s difficult to determine because if one looks at when one decides whether courts and tribunals are not working properly, you’ve got to have some sufficient number of applications before them to determine that and I’m just frankly very surprised at the limited number of applications made in this area.
And that in a sense sends off warning bells?
I think there are lessons to be learned and warnings to be heeded in this regard and I think that it is an area that hasn’t really had enough public attention.
The Family Law Council estimated in 1998 that only 3% of sterilisations performed were going through the correct legal channels.
Yes, well again those are estimates that are no doubt based on material. There have been estimates by the Family Law Council and others as to very low rates of compliance with the with legal channels in this area and that’s probably right but I just have no means of means of knowing.
You told a conference in 1999 that carrying out a procedure on a minor unable to consent without authorisation was child abuse, assault and a violation of bodily integrity. Could you just explain what you meant by that?
I have said in the past that it’s not always appreciated by those who carry out these proceedings without approval that what they are doing constitutes an assault, a serious assault and it may well be regarded as child abuse of the worst sort and it seems to me that those who perform these procedures are not fully aware that that’s the consequence of failing to get approval whether it be from a court or a tribunal.
So it’s criminal assault?
Indeed yes, it is criminal assault and it’s also assault that could well give rise to actions for damages in future.
Why don’t we ever hear of any doctor being charged or convicted?
I have no knowledge of issues as to prosecutions or claims for damages in this area. I know there have been proceedings in the United States – which of course has more claims for damages than we do – but in one US case, in fact the judge was sued for approving a sterilisation that wasn’t successful. The action shows that there’s perhaps more or a higher level of awareness in that country than in this one.
Do you think what could be required is a look through the Medicare figures? Apparently if you analyse the figures and the claims within the system, you can work out what doctors are actually performing operations without consent.
I am really not able to comment very much on issues of how one establishes the level of this problem. No doubt there may be ways of doing it through Medicare and there seem to be quite sophisticated computer systems that will assist but I don’t really have any knowledge about that.
You quoted the late Elizabeth Hastings in her in a speech in 1999 in which she said, ‘a world in which government cannot be bothered to investigate potential illegal medical assault is a world in which people with disabilities can have no certainty or confidence about the human being or their future’. Do you agree with this?
Yes I do.
Well I think it’s very interesting when one thinks about Elizabeth Hastings. She was an outstanding woman, she was severely disabled herself and she had overcome by a great determination those disabilities. She was quite a dynamic speaker and she was a great spokesperson for the disabled and I think she put it from the heart when she said that a government or governments that don’t care for the disabled people in this community are lacking something very significant and the community itself’s making something very significant of those circumstances.
Why do you think the Federal Government hasn’t pursued this matter?
I have no real knowledge of why successive governments of both federal and state haven’t taken a greater degree of interest in this area. There are of course other groups in the community who would complain that not enough interest is taken in their problems as well, but it seems to me that disabled people and particularly the disabled children ought to be pretty high on the list of concern for government.
Does it concern you that the issue hasn’t been taken up?
It does concern me that the issue hasn’t been taken up in any real sense. I know the Federal Government has made some attempts to draw attention to it through the Attorney General’s department from time to time but that seems to be about as far as it’s gone.
In Jane’s case you said that members of the profession may form sincere but misguided views about the appropriate steps to be taken, can you explain what you meant by that?
Well in Jane’s case I referred to members of the medical profession possibly having sincere views but being misguided and I meant by that that when one hears these cases, it’s not simply a medical determination, I think what used to happen is there was a belief that whatever the doctors said was right, and of course there’s an enormous amount of work being done in this area which involves people like psychologists, people who have particular expertise with teaching disabled people, and it’s very important that their views be taken into account as well as the purely medical view – and for that matter the psychiatric view or psychological view, although those are important as well.
When is a sterilisation of a minor warranted in your opinion?
I don’t think I’d be prepared to state when a sterilisation of a minor is warranted because I’m very much a believer in the examination of individual cases and unless you have the particular circumstances of that case before you and what has happened, and what the problems of that particular child, young person are, I don’t believe you can make a decision speaking in general terms about it, I mean there would be those who would say for ethical or other grounds that it’s never warranted. That’s not the law in our country and on the evidence before me in cases that I have been involved in, I have taken the view that it was warranted but that doesn’t mean that I would give any form of carte blanche to this procedure, it’s got to be very carefully considered.
How many sterilisations have you approved?
Off hand it’s very difficult to answer a question like that. I would have thought three but I’d be open to be corrected about that.
But very few in your entire career?
We know of one case where we’ve actually in fact interviewed the family, they lived in America, an Australian family and they lived in America for two years and had their 15 year-old daughter sterilised there, suspecting that operation would not be consented to here. Can I just ask how you view people having their children sterilised overseas and not having the matter properly considered in Australia?
I’m troubled about people going to other countries for the purposes of dealing with these matters on the basis that they will not get approval in Australia. It’s difficult to stop that happening of course but I think people should remember that the reason for these restrictions in Australia is really directed at the interests of the children involved and it goes back to the discussion we had before when I was saying that parents aren’t always objective in determining that sort of issue
Interview with Francis Vicary
Francis Vicary who has cerebral palsy, is a well-known advocate for the rights of the disabled and president of the Brisbane committee of Queenslanders with Disability Network. She was interviewed in Brisbane on Tuesday May 13, 2003. The following is an edited interview transcript. Due to the possibility of mis-hearing, the ABC cannot vouch for its accuracy.
What is the reaction of people to people with disabilities in public showing affection?
Oh, I think before I frightened people with disabilities showing affection because it’s about desire and I know if you go show affection in public like I have, people look at you, and yet it’s okay for them. It’s a whole global thing that goes deeper than just showing affection. It’s always disabilities are supposed to be out of sight and not in the public, and people really find that normalisation – although we’ve been doing it for 20 or 30 years – still really confronting. It’s different. They see anything as different as frightening.
In your document that you wrote for me, you said that the general public found people with disabilities having sex perverted. Can you explain that?
Oh, I think society if you take society in general as able-bodied people, they think that when people with disabilities – the thought of them actually having sex – is really disconcerting and they can’t get their head around that and yeah they just can’t get with the picture, although it’s people with disabilities expressing power and expressing lust. People just find that sort of confronting and dangerous. I purposefully when I’m out, I show affection to whoever I’m with because I know that people find it a bit disturbing.
You want to shake the branch.
Yeah. I may cause discontentment and disturb their comfort.
So are you a sexual person?
Yes and it’s interesting cause I think I’ve always been a sexual person. I grew up with four sisters and it was a normal development. I’m the youngest, it was just natural. I read literature and studied and you just you know, yeah it wasn’t an issue that I was sexual.
Now you told me the story about having three boyfriends.
Not at once!
Not at once. Can you tell me about the fact that you’ve been out with men and have they had any disabilities?
No, well they didn’t have any disabilities — but you know, they are men!
That’s their disability?
Oh we won’t go there.
You might get a bad camera angle if you go there.
All of my partners so far haven’t had a disability and I don’t know why. It’s just the way it’s happening.
Now you, you chose for yourself not to have children didn’t you?
Yeah. When I was about 32 I made the choice that I wouldn’t be having children because I didn’t think I could, or I knew – never mind I didn’t think – I knew that I wouldn’t be able to look after them physically. I mean yes, I can conceive them and have them, but physically I couldn’t care for them and I didn’t think it was fair to have them and then get someone else to care for them.
Now you made that choice to be sterilised, why then is it such an issue for other women?
I chose the very minimalist procedure. I had a tubal ligation and endometrial ablation. Like 24 hours in hospital, home and out and no real recovery time so, and I think what was your question?
I’ll ask you a bit more about that. Why did you choose tubal ligation?
I chose tubal ligation and ablation because menstruation was an issue… it was just inconvenient and yes I chose convenience as opposed to I didn’t really think of it as sterilisation, or I yes I did think of it as sterilisation because I knew what was happening. But, I chose it as more a way of life and I wouldn’t have to worry about contraception and I wouldn’t have to worry about menstruation. It was like having all my female issues solved in one neat package. But, still I made that choice and I knew what I was doing and I don’t think that people have a right to make that choice for other people when there are less invasive alternatives available.
What’s wrong with a hysterectomy?
A hysterectomy is really invasive, like I’m not a medical person but it’s a big operation, it takes 4 or 6 weeks to recover. The doctor offered it to me and I said I don’t have that time. So she just said okay we can do – and it was a female gynaecologist I have to confess – and I think although you get scar tissue and you know you have issues of other invasive procedures, I just don’t think it’s right when there are other alternatives.
Now we interviewed a woman yesterday called Annette and she says that her parents had her sterilised, she had a hysterectomy as a very young teenager and now she feels like her womanhood has been robbed. Can you tell me why she’d feel like that?
Well if you go back through the literature, the centre of the womanhood is said to be the uterus or they call it the womb cause they use modern technical language, and that is society has constructed that as the centre of womanhood, as you know where the female identity sits. Therefore if you displace someone’s uterus and take it away there is a natural reaction that you would feel as if you had your womanhood stolen because of the fact that it is seen that way in a social context.
Why is it important for women with disabilities to make their own choices about sterilisation?
It’s a power thing. I really don’t like the idea, I object wholeheartedly to anyone else making choices about a woman, about a woman’s body because I think even women with disability have the ability to know what’s going on in their body and to make informed choices about what they want to do with their body, how they want to live. I still I don’t think that sterilisation is the best alternative. Cause it’s a major operation is really disturbing for someone who doesn’t quite know what’s happening, and I just think that women, even women with disabilities, all women, regardless of that, need to be able to make their own choices or to be informed. People are not given the information to make informed choices because maybe the doctor that they’re seeing hasn’t had exposure to the research or doesn’t know the latest thing in women’s health.
What about the parents of these very intellectually disabled children who have the mental age of a two year old and who don’t understand what’s happening and they can’t consent. Should they be able to have hysterectomies?
As an idealist, I would like to see them given more alternatives, more options. Like give them more information about what’s going on with women’s health nowadays. There’s contraceptive options where you don’t have to menstruate, and there’s pills that can be put under the skin that are slow release hormones that are far less traumatic and less permanent than sterilisation and I really feel sorry for the parents because I think they’re being pressured by the fact that they can’t cope with what’s going on in their child’s maturity and becoming a woman and the medical profession is not helping them to deal with that and to change. I’d like to see them given options and information which we know are out there.
Should sterilisation, and we’re talking hysterectomy here, be seen as an option for menstrual control?
I don’t think so, no. Well, I am controlling my menstrual cycle and I haven’t had a hysterectomy so even as a last resort, hysterectomy is not a good option. Okay some people can have ablation, some people are allergic to different combinations of drugs, but there’s always something else, there’s more than one method of drug therapy and I really think that it’s not an option.
What about those people who say I’m scared that they will be sexually abused and get pregnant?
Well there’s more ways of contraception than hysterectomy. I mean if that was the only form of contraception, we’d have zero population growth. So I really think that they need to investigate contraceptive options and look at that rather than seeing it as well there’s this one thing and it really has the potential to cause great emotional disruption and physical consequences later on.
Can you decide when someone is 12 or 13 that they should be sterilised?
Well I don’t think you can because even then they’re only beginning on their adulthood, like they’re not adult, they’re adolescent. They’re just going through puberty, they’re going through changes in their body which they need to learn to adjust to. They need to have education, they need to be taught what’s going on with their body.
In some ways do you see sterilisation as an extension of the eugenics movement?
Can you explain why.
The eugenics movements seeks to destroy everything that is different or not perfect so if you sterilise people with disabilities who are imperfect in those terms, then they’re not going to be having children so you’re going to cut off one option for producing difference, so I do. But I think it’s also slightly sinister to think that doctors would do that but you have to bring that into the equation because it is part of the equation.
Why do you think doctors agree to do illegal sterilisations?
Because they’re under pressure by the parents. They are pressured for time, it takes time to go through the court process but they are in whatever state you’re in and they have the strength in their argument to successfully proceed now in giving legal permission so there would be that thing but also, since this whole power thing where what they recommend you was better, I think there’s conflict between the law and community trying to say no, we don’t think this is the best option, and doctors are thinking well you know we think it’s the best option so let’s just do it and we won’t tell anyone so.
Anecdotally we’ve heard that there’s still many operations being conducted these days, can you tell me does that surprise you?
It doesn’t surprise me, it disturbs me cause I think that you can understand, or no you can’t understand but you can see why doctors would do it. But I think the whole issue is disturbing because it’s about taking control of the woman’s body. It’s basically a female thing, not a lot of males would just really get forcibly sterilised so it’s that old, age old control thing of let’s control the woman.
You had a funny discussion with a friend of yours where you talked about what if men menstruated, can you tell me from the beginning about that conversation?
Well, this woman I went to uni with and I’m still friends with – we were talking about the different options for dealing with menstruation and controlling it – and she said if men menstruated there’d be an easy, simple option for it to be controlled because medical research and dollars would be put into it if it was seen as important.
And you think they’d come up with a less invasive basic treatment?
I think they’d come up with a less invasive, more affective option.
Is sterilisation a further way to marginalise people with disabilities?
It is. People with disabilities are often already marginalised in that they’re not, they don’t have access to as all the buildings in communities, they don’t have access to jobs or economic power, therefore sterilisation is a further way to marginalise them, to control them.
What’s wrong with someone with a disability deciding to have a child?
Nothing. If someone just really wants to have a child, they have every right to have a child. If they’re making that decision, they have, you would assume, the supports in place, the relationship in place, well even if they don’t, they still have a right to have a child. A lot of people without disability have children that are in way worse situation, way less stable situations and yet there’s no questions asked.
Can you tell me about what happens in maternity wards sometimes?
Well I’ve heard – and this is only what I’ve heard – that when people with disabilities, even mild disabilities have children, the department comes in and takes their child, just makes the arbitrary decision to take their child. Now that’s only what I’ve heard, I’ve seen no evidence, no reports, although it’s widely spoken of in the advocacy community as happening but we can’t, we we can’t get the hard evidence.
The Department won’t give you the figures?
Well I don’t know what’s going on, I know a friend of mine who’s working on it as a project but it’s not, you just can’t find out what’s really happening.
Well we know in NSW that children are being removed at a much higher rate than the rest of the community, can you tell me why authorities are so keen to remove children?
Authorities have this concept of people with disabilities as needing care. Like someone would see me living in a unit as totally in receipt of all the things I need for daily living and therefore as less autonomous, as having no choices about what I do or with whom I do it. So there’s just the this whole caring thing, where you have to care for the person with disability and they just don’t have a concept of people with disabilities being able to care for others.
But isn’t it also true that just like in the able-bodied community there are people with disabilities that probably should be parents?
Yes, but also I think people with disabilities often have family members, supportive staff around them who can help them through that situation. Actually people with disabilities in that situation often have more supports around then than people without disabilities who are say homeless because people with disabilities generally have supports already existing in their life which could be augmented to help them to care for the child.
What about the hardline view though that if you can’t care for the child, if you need help, if you need support, then you shouldn’t be a parent.
Well I think that this is a view of a patriarchal society which I thought we were moving beyond.
One of the families we met, their son has a moderate intellectual disability and he’s fathered a child. The mother wants him to consider sterilisation but he won’t and she says that her only alternative would be to go to like the Guardianship Board, can you understand where she’s coming from?
Yes and no. But what I think in this situation is not really his disability, but that age old thing that men often father children and have nothing to do with them, and I think she is trying to prevent that. Maybe she’s acting in the best interests of what she thinks will be a good thing, but I really think if he doesn’t want to be sterilised, he has a right to choose. I mean if he is actively arguing against it, he obviously has a concept of what it means and I think we have to honour that because he knows what she is trying to do.
Does it matter if he goes out and fathers other children and takes no responsibility for them?
What’s the difference between him and other men who do that? You know, is there a difference. Are we saying that because he has a disability, he has to be more responsible than other men? I mean if he is out having sexual intercourse with other women, they also have a responsibility to control their own fertility.
What about if he’s having sex and fathering children with other women with moderate intellectual disabilities who can’t manage children?
Well I still think that he has a choice and I think I don’t see why we should make him more responsible than other men just because his mother has sort of an influence in his life. I mean I know a fair few mothers who’d like to do that and their children don’t have disabilities.
Just while we’re on the subject of this, we’ve met some very passionate mothers who want their daughters sterilised, and their daughters are very severely intellectually disabled and they say they want them sterilised because they can’t manage their hygiene and they’re worried about sexual abuse, and that other alternatives don’t offer a solution. What do you say to those mothers?
I would say do they know what the alternatives are? Have they investigated the alternatives fully? Talk to somebody who manages fertility, who specialises in women’s health because there are other alternatives to invasive surgery.
What some of them are concerned about is that when they are no longer around to care that those other alternatives may not happen.
Okay, if their son or daughter needs a level of care that they are giving, then that level of care is not going to change, there will always be someone involved who is giving that level of care, okay. Unless we have a great reversal and people become institutionalised, they’re going to be getting that care in the community. History has shown us that people with disabilities who have good supportive family care often get good supportive care after their family is no longer able to give that. The people who live in that care would know the person, would know their medical history and would continue on with those processes.
What about their argument that sterilisation will stop the consequences of sexual abuse?
Well it’s not going to stop sexual abuse happening. It’s only going to stop conception happening and conception can be prevented numerous other ways so it’s not going to do anything to prevent sexual abuse.
What do you think should happen to those doctors that are conducting illegal sterilisations?
I think they should be investigated and severe questions asked as to their professional practice.
So you think the doctors potentially should be charged?
I think I would like, you see I’m an idealist, I’d like them to be educated, that’s probably almost better because they have to realise their views with more up to date views and learn more about their patient. Then I have the big question to ask any doctor who doesn’t know what other modern things that they can offer their patients.
Chief Justice Nicholson says illegal sterilisations on children and young women with disabilities is child abuse and criminal assault, do you agree with him?
Yes. Because it’s other people taking power over their body and abusing it and you know affecting it in a physical and a mental circumstance, so yes.
The parents we met argued that they know best for their children.
Yeah they know best with the information that they’re given, they are in really difficult situations and they’re only acting on the information that they have. If they had more information about what was available, I think they’d have more choices, therefore they could make different choices. That would inform their knowledge and their decision-making processes. I’m sure you talk to any parent and you say we’re going to offer a simple visit to the doctor once every three months, or major surgery, major anaesthetic, major recovery time, later on scar tissue – they would have to make different choices, they love their children and they care about what’s going to happen to them.
Just getting back to illegal operations, if there’s so many illegal operations happening, is the system of tribunals and courts failing?
Obviously. I think if we can say there’s illegal operations happening, what are we doing about them, why aren’t we prosecuting? I mean if they are illegal, then let’s do something about them. It’s only when you prosecute that people change their attitude and stop doing things that are illegal.
It’s estimated that there’s been hundreds of operations, why do you think no one has ever been charged?
Because it’s people with disabilities. They’re less valued. Even in the courts, if you’ve got someone with a disability as a witness, their testimony is given less weight as to someone without a disability. I know as a woman with a physical disability I’m twice removed from the centre of power because I’m a woman and I’ve got a disability so I really think that it’s just wrong.
At the moment if you wanted to have your child sterilised you have to go and argue before a tribunal or the Family Law Court, many parents find that system confronting and expensive and time consuming, can you understand why they would?
I can understand why they would and I can understand why the doctors would find it time consuming and I really think that parents shouldn’t be put in the situation where they have to do that. They should be given other options and I think we need to maintain the tribunal and the Family Court.
So you think the system of tribunals and family courts does work?
It obviously doesn’t work if you’re shown that it doesn’t work by showing how many illegal sterilisations are still happening. I think it could work if we made it so that all hospitals might need to notify to check the records. I mean you can’t do a hysterectomy in a doctor’s surgery unless it’s a really barbaric job. You know so these people are going to some sort of medical facility using general anaesthetic, using theatres, there can be tracking of this and if all operating theatres had to check that the permission was in place, illegal sterilisations would cease.
There’s also a very good theory that if you check the Medicare records, retrospectively, you could actually find out who is conducting these illegal procedures.
You could because you know you could find out.
Why do you think no one has ever bothered?
Again because it’s people with disabilities and who are wrongly perceived as less important, less valued in society.
What would you say to a parent that’s contemplating having their intellectually disabled child sterilised?
I’d say let’s seek alternative treatment. Let’s seek other drug therapies first, that you know because with drug therapies we can control menstruation, we can control contraception. You don’t have to go down the line of invasive sterilisation.
The parents would say to you, you don’t live with this child 24/7, you don’t know their needs, you’re not the one who cares for them.
I say yes, it’s a valid argument. But, any child or adolescent can be taken to a doctor once every three months or so for a simple medical appointment which will solve their problems. I would say also you are thinking of a major medical procedure that’s going to be invasive surgery, recovery time, how is the child going to deal with that? The consequences of the surgery, scar tissue, painful abdominal pain, you know the child is not going to understand why it’s happening or what it means or what’s going on with their body. There are less invasive alternatives and I have sympathy for parents who are not given those choices.
Talking about mildly intellectually disabled women, over the years there’s been some cases where women have thought they’re going in for a gallbladder operation or an appendix operation and they’ve actually been sterilised and haven’t found out til years later when they’ve in fact tried to have children. Why do you think that would happen?
In the past the medical profession – and all people – saw people with mild intellectual disability needed to be controlled, managed and just took decisions. I would hope it’s not happening now. I mean I really would but I think that it’s about a power thing, it’s a control thing, it’s a social order, you know these people are different so we need to control them, to order that difference.
Francis can you tell me what your disability is?
I’ve got cerebral palsy so I have had that from birth.
And cerebral palsy doesn’t restrict you as a sexual being does it?
No. I don’t think so. Like I, no it doesn’t restrict you as a sexual being. Yes it’s a physical disability, but it’s not a sexual disability.
Do you think people would look at you and say you’re the sort of person they know that shouldn’t be having children?
I know people do look at me and think that you couldn’t be having sex and I think that’s their problem, that’s not my problem.
In a way do you see that argument sort of extends right through to the argument of sterilisation?
Yes and I’m lucky because I have the power to deconstruct that argument, I have the power to leave all those views behind and to be an active woman, to be a sexual being, to be a professional woman and to be a holistic human being where as that it’s an effort, you have to make a conscious effort not to adopt a social attitude towards yourself. You have to make a conscious effort to surround yourself with people who don’t agree with those marginalising opinions and keep on track.
Many years ago people in institutions and homes women were randomly sterilised, then in 1992 Marion’s case came to be, and a system of tribunals and courts was introduced to decide on who should be sterilised. Now these parents say the pendulum has swung too far away from the interests of parents and indeed their own children, what would you say to that argument?
I have sympathy for them and I can understand that argument. They as parents have a right to decide what’s going on in their children’s life and you would feel very put out if someone was telling you how to raise your child, how to care for your child. Yet I really think that they need to be not necessarily controlled by the law, by the tribunals. But, when they go to the tribunal, even if they get that far, have someone there who can say look, okay we’re going to rule against you but we’re going to offer you all of these other options, introduce you to these medical professionals who can help you because they end up at the tribunal because they don’t know any other solution to their problem. They’re searching for answers and the answer that they get is sterilisation and therefore they go down the road of the tribunal. If they got that far down that road and got a negative ruling – which in a lot of cases is correct – then there should be some other processes to say okay, we know what you’re dealing with and we’re going to help you and guide you through this.
Interview with Annette Kalkman
Annette Kalkman is 26, has cerebal palsy and is confined to a wheelchair. She was sterilised at the age of 14, she says the decision was her parents and not her own. Her condition is not genetic. The following is an edited interview transcript. Due to the possibility of mis-hearing, the ABC cannot vouch for its accuracy.
Annette I’ll just get you to tell me how old you are and what your disability is.
26 and my disability is cerebral palsy.
When you were growing up, did you think that maybe one day you might want to have children?
Can you tell me about that?
I do want to have children but I can’t now.
Why can’t you have children?
I had a full hysterectomy.
How old were you when you had a full hysterectomy?
Did you have a choice as to whether you had a hysterectomy?
Who made that decision?
My mum and dad.
Why did they make that decision?
Because they didn’t want me to have a period.
Did they think that a period would be too distressing?
But that’s not the case?
Annette, you told me that you’ve had a full hysterectomy and that you can no longer menstruate, why would you want to menstruate?
Because that’s a part of me.
It’s a part of you?
Part of your womanhood?
Do you feel like you’re not a woman?
You feel that something’s missing is that it?
Can you tell me how you feel?
Because you don’t menstruate?
So, what you’re saying really is that menstruating is part of naturally being a woman?
Could you physically have a child?
I don’t know.
Would you like to think that you could at least have that choice?
Could you tell me about why that’s important?
Yeah. I think it’s important because it’s part of me.
Part of you?
Have you got a boyfriend?
And have you been sexually active?
Before you met this boyfriend though, have you had sex before?
So you have the same sexual desires as any woman?
Could you tell me a bit about why it’s important to be able to be sexual.
Yeah. Part of me. It’s part of womanhood.
Part of womanhood?
Is sex fun?
How much fun?
I spoke to another woman with cerebral palsy and she said that the public often think that it’s perverted for people with disabilities to have sex. What would you say to someone that said that?
No it’s not.
Because we are women.
Why should a woman with a disability not be sterilised?
Because it takes their choice away.
It takes their choice away?
What choice is that?
Do you think if you could have kids that you’d be a good mother?
Can you tell me how old you were when you were sterilised?
I was 14 years old when I was sterilised.
Looking back now, how does that make you feel, the fact that you’ve had a hysterectomy?
Because I want to experience a period.
Do you think that your parents were acting out of your best interests?
I think they, yeah.
Why do you think they decided that you should be sterilised?
They didn’t want to have a period.
Is that because your dad thought you might not manage?
Do you think your parents are also concerned because you might get pregnant?
Would that be a good thing or a bad thing if you were to have a baby?
All right. Can you tell me have you got any other friends who’ve been sterilised?
You don’t know?
I don’t know.
Have you spoken to your dad now that you’re an adult about what happened?
If you did speak to him, what would you say about how you felt now?
I’d be angry.
Does he know that you feel angry?
Mm, yeah I think so.
Do you think that other parents do the same thing?
I hope not.
What would you say to parents who are thinking about sterilising their children with disabilities?
I would tell them to stop and think about it.
Interview with Sue Ferris
Sue Ferris is the mother of Laura, 13, who is intellectually disabled. She unsuccessfully applied to the Tasmanian Guardianship Board to have Laura sterilised. Sue Ferris was interviewed in Deloraine Tasmania on Wednesday May 7, 2003. The following is an edited interview transcript. Due to the possibility of mis-hearing, the ABC cannot vouch for its accuracy.
Where and when was Laura born and what sort of baby was she?
Laura was born in 1990, in June 1990 at the Canberra Hospital and she was beautiful, she was the perfect baby. She slept through from about 5 weeks and was very, very happy – she used to love playing with her brother. Yeah, she was just very happy. They were always together and she was very sociable, always into mischief, had a delightful little smile that you could always tell when she was going to do something naughty.
And what happened to change all that?
In October 1992 she had a hep meningitis vaccination. I questioned two doctors on the safety of it knowing that was a new vaccine and Laura had chronic and severe eczema on her bottom at the time which was being treated with cortisone creams, and the doctor gave her the injection, told me it was completely safe, had been thoroughly tested and vaccinated her into the middle of the eczema, saying oh well we’ll have to make it the best of a bad lot. Within days she was very tired and she was just ignoring us a little bit I suppose, and becoming a bit unresponsive but we didn’t really connect that with the vaccine at the time. We always thought that, oh well she was a bit off colour because of the vaccine and you know that can be expected, but just slowly it got worse. A few months later we started having a lot of behavioural problems – tantrums – I remember one particular time where she’d cut herself and I was at the shops of the time, she was with her grandparents and they thought oh we’ll put a bandaid on and she just screamed. It was just a totally unnatural reaction from a child of that age and that was when we thought well we better investigate this so we took her to a doctor and then she was referred to a paediatrician and went underwent quite a few tests and then got referred to another doctor, a neurologist in Sydney, and had further tests. They said that she presented a very worrying clinical picture but they didn’t seem to want to see her again which really puzzled us.
Can you talk about the diagnosis?
Yeah. It was about September 1993 that she was diagnosed with childhood disintegrative disorder. We were told that she was presenting with mild to moderate autism with flashes of normalcy. She still had speech at that time but it was becoming meaningless.
Could you tell me how Laura was very normal child – if I can use that term – and how that changed?
Yeah. She used to be able to sing and count to ten. She use to love books, especially Postman Pat and she used to babble away little passages.
And she was very bright wasn’t she?
Very bright, yes. We always thought that she was brighter than her brother. She said words so clearly from the word go and even though Mark was 18 months older, it was like she was teaching him how to say words clearer.
And now how has that changed? What’s Laura’s intellectual capacity?
Laura now is functioning at about the 14-month level. Basically we have to follow her around everywhere. She doesn’t understand road rules, she can’t toilet herself, she’s timed rather than trained, she’s bowel incontinent at night, she’s quite hyperactive, she basically needs prompting to do any normal activities.
Can she clean her teeth?
She needs help with cleaning her teeth and any hygiene routine, washing her hands, she needs to be encouraged because she’d rather just play with the water.
Could Laura ever manage menstruation?
I don’t think so. I don’t think she could manage menstruation at all. She needs a lot of help with it now. We have to give her pads and we help her if she just throws old pads on the floor, she doesn’t know what to with the used ones at all. She just doesn’t have a clue. I don’t think she even knows what blood is.
Does she feel comfortable wearing sanitary napkins or does she take them off?
So far she’s been pretty good for wearing napkins, she has tolerated them better than we thought so far but she’s so unpredictable that you don’t know what’s around the corner. With her past record with clothes problems, especially at changes of seasons she has a lot of difficulty in adjusting to different sets of clothes. For example she doesn’t like short sleeves. At the moment she’s tolerating long sleeves but even sleeveless tops she’s not really comfortable with so every change of season she’s not really happy, and you know she’s having a period and she still wants to go in the paddling pool and she doesn’t really understand why she can’t go swimming. And of course we don’t have our own pool and it’s just not appropriate to use a public pool in those circumstances so she misses out.
Can you tell me how much she loves swimming and how much it’s been part of her life?
She’s passionate about water, a lot of autistic children have obsessions with certain things and water is Laura’s obsession. She just can’t get enough of it.
And how does her menstruation affect that?
Well at the moment she’s having periods every three weeks, fairly heavily and it just means that she’s restricted as to how much she can go swimming. There was one episode you know where she had a period at school and so she had to be left behind and the school has their own swimming pool now and because of that she’s going to be able to see the other kids going swimming and I can see there being big problems with that. You can’t explain to her why she can’t go in the pool.
Describe one of Laura’s worst tantrums.
Laura’s tantrums can be very violent. She becomes like a wild animal, she screams, bites, scratches, whatever she can do; she’s just completely out of control. A couple of years ago when she use to have tantrums, it was constant hanging from my hair and biting my head at the same time. Now we’ve learnt to use a teething ring for her which sounds a bit funny having a teething ring for a 13 year-old but it’s it saves us a few bites and herself because she will bite herself as well and she’s often got cuts and bruises on her wrist from where she’s bitten herself. Now she’s just realised that’s her hurting herself so that then we get tears after that cause she’s hurt herself as well.
How would Laura being sterilised help matters?
If Laura was sterilised she wouldn’t have the problems of the periods at all. It would mean that she wasn’t restricted as far as swimming was going. If the school was going swimming, she could go and there wouldn’t be any worries. You wouldn’t be constantly wondering if she was going to start, it would just make her life so much happier because swimming is her passion.
Now I believe at one stage Laura took her clothes on the school bus and was suspended, can you talk about that?
Yeah. Laura in the early days she had a lot of problems with clothes, she absolutely hated them, she had a real fear of them – couldn’t stand them against her skin and she couldn’t tell us why. When she was in Canberra she had no clothes on for three months and then we started dealing with that problem. Then when she was at school the problem got worse and worse and worse again. She’d be undressed at school – she’d just undress herself. She could take the clothes off and flatly refused to put them back on again, she’d just tantrum if anyone went anywhere near her clothes and at times she’d be undressed from about 10 o’clock in the morning till the end of the day. We used to get regularly called in by the Education Department because of her behaviour, which seemed a bit daft to us because it wasn’t her fault; it was part of her disability. But in the end, they threatened to suspend her from the special needs school bus – in fact they did suspend her from the special needs school buses – but I spoke to the bus driver, he was still happy as long as everyone knows what was going on. I said to the Education Department that I refused to take her myself, that she will have to go on the bus, but that was only after speaking to the bus driver because he was a person who was involved in the driving, I wanted him to be comfortable with what I was doing.
What’s the problem with Laura taking her clothes off if she’s menstruating?
If Laura’s menstruating, there’s a total lack of dignity. There’d be blood everywhere, it’s just an unhealthy situation for the family, it could be unhealthy for anyone if she does it down the street. There’s no guarantee that she won’t do it down the street, there’s no guarantee that she wouldn’t even suddenly decide to strip off in Woolies and throw pads all over the fresh fruit and vegetables, I can’t guarantee that.
Does Laura know what menstruating is?
I don’t think Laura knows what menstruation is. She’s got the functioning level of a 14 month-old. I don’t know how you tell a 14 month-old what it is. If you had a normal 14 month-old, would you start talking to them about menstruation at that age? I don’t think so.
Tell us a bit about Deloraine and why you came here.
Our family decided to move to Deloraine 6 years ago, we’d already heard about the program, “Giant Steps” which is a centre of excellence for autistic children. In Canberra Laura was being threatened with suspension at her school a lot of the time, in fact I withdrew her from her school before we came to Deloraine because she was regressing there badly. Even though my husband had to look for work – he didn’t have a job to come to for three months – it wasn’t a difficult decision to make and it’s been absolutely worth it for Laura, even though she still can’t talk, she has a lot of deficits, she has made slow improvements which is a hell of a lot better than having the regression. I don’t know where she’d be if we hadn’t come. I just dread to think.
Deloraine in Tasmania has been very embracing, how does that contrast with the attitude of the Guardianship Board?
Deloraine is a very tight knit community. People know the children from Giant Steps. The community helped to set up the school and I think they’re very proud of having done that. It’s an achievement that just hasn’t really happened anywhere else in Australia, although there’s another Giant Steps in Sydney, but the community’s very proud of it, they know the kids, they’re very accepting of the kids, they’re very accepting of the families and it’s just made such a difference to us. It’s enabled us to function as a normal family again as far as normal can be with a disabled child.
So the only let down so far has been the attitude of the Guardianship Board in Tasmania. Could you talk about that?
Yes. It was a very difficult decision to try and go down the sterilisation road for Laura. You always hope that your child will get that little bit better all the time, although with her diagnosis the prognosis isn’t good. So it was with a tremendous reluctance that we decided that probably the best thing for Laura was sterilisation and so we went to the Guardianship Board and we got all the reports that they wanted initially, and then they just kept asking for more and more reports all the time. And it was a very tedious long process, very stressful for the family, created oh a lot of tension, a lot of misery, absolute misery. It was bad enough making that decision in the first place without feeling that you’re almost a criminal by doing it. We could tell that, it didn’t seem to us that they were very supportive of the idea and it seemed that they had their own ideas on it and they couldn’t understand our reasoning and if we said anything, our arguments were just dismissed, especially in the hearing.
So you think the Board had already made up its mind?
I think so, it would appear so.
Can you tell me what form of sterilisation you were seeking and why you wanted that?
It was the sterilisation where she’d keep her ovaries still but it was mainly to stop the periods. And also for later on while we’re not concerned so much about the abuse side of things now, if she ever went to a group home or any institution we just we want her safe. I don’t think there’s any guarantees, even though the hysterectomy wouldn’t necessarily stop abuse, it might stop the consequences of it, or possible consequences of it and we just feel as well that we’re getting that little bit older, Laura’s getting quite big, she’s hard to handle. She’s got a brother and sister and I don’t want to leave them the problems. I don’t want them to feel that they’ve got that problem later on, of having to be worried about that sort of thing, They’ve got their own lives to live.
So you, you’re worried about pregnancy?
For later on yes, I’m worried about pregnancy. I just feel that with Laura she’s so vulnerable, especially if she decides to strip off her clothes and there’s no guarantees. She might not want people touching her but I don’t know how she’d react. I think in a lot of institutions and those sorts of places if the parents aren’t in control. It’s very easy for these people to say, oh we’ll put her on drugs so she might not even know, we don’t know. She certainly couldn’t tell us if there was anything wrong, and I really fear for her future.
Because she might get pregnant?
Well if she got pregnant, there’s just no way she could cope with it. I mean you can’t ask a 14 month old baby to look after a child and in fact one of the doctors that we did talk to said to me that if Laura ever got pregnant, the Guardianship Board would make her have an abortion. I haven’t sort of asked them about that but I just don’t want her to get pregnant in the first place. To me a hysterectomy is a better option than an abortion later on.
What did the Guardianship Board require of you and your family before the hearing?
Before the hearing the Guardianship Board wanted numerous reports. We started off with paediatrician, a psychologist report and gynaecology report. Then when we put in our application with those reports, which is the only ones they asked for originally, they asked us to go to the experts who were Family Planning, they decided. And so we went to Family Planning, we hadn’t spoken to Family Planning so they didn’t know what was going on either. The doctor there was quite supportive as well, she could see our point so we put that report in and then we had to see the Public Guardian and it was her that pushed the case to hearing because the President of the Guardianship Board didn’t want to go to hearing at that point. He thought it was premature. The Public Guardian could also see Laura’s difficulties so it was then that she sort of pushed it to hearing stage and that was when the Guardianship Board wanted yet more reports. So then we had to go to a psychiatrist, another gynaecologist and there was a few others.
How many specialists did you have to see?
We must have seen about seven or eight specialists, gynaecologists, paediatricians, psychologists, psychiatrists, etc.
So how and what was the weight of opinion?
The weight was in favour of Laura having the hysterectomy. Most people could see her problems and the potential risks for her and the fact that it will adversely affect her life by having the periods.
Why then did the Guardianship Board say no?
To be honest I don’t know why the Guardianship Board said no. I think in the past a lot of these operations were done unnecessarily perhaps, although I don’t know the ins and outs of the cases myself. But I think the general consensus is that sometimes they weren’t absolutely essential and I think they’re trying to take a bit too much care. I think they’re not looking at each case on merit anymore, I think they’re scared to say yes to any hysterectomies now and that’s very sad for the children who really do need them.
So can you talk a little bit more about that, I mean my understanding is that years ago people in institutions and homes were randomly and indiscriminately sterilised. Can you talk about that and the contrast today?
I think years ago the accepted thing was to have people in institutions sterilised. Now I think they’re a lot more cautious, I think with the thinking now that these people should be out in the community and contributing to society as a whole, I think now that’s just spoilt it for those people who really do need to be sterilised. There are still some people who are very intellectually disabled and some of them really do need to be sterilised. They just don’t understand what’s going on. It just doesn’t seem fair for them, they just, don’t understand what’s happening and you can’t explain to them.
But I guess you would agree that in the past there were some cases of or quite a few cases of people that should never have been sterilised. Can you talk about that as well?
Yeah. I think there were cases in the past where the girls shouldn’t have been sterilised. I think now that there are degrees of disability. Some people can cope, even though they’re disabled they can cope with the normal things that you or I could cope with, They might possibly even – though they aren’t severely disabled – they can actually have a relationship, or have a family even and they have that right and that’s fine. I don’t have a problem with that, but there are some people who just can’t deal with it, they’re just so badly disabled and I think that in my experience to the outsider of our family, people can’t understand that things can be so bad for the child. I don’t think they can cope with it and so I mean I find myself constantly, I have to almost laugh at some of the funny things that Laura might do because then it helps other people to cope which is a funny way round of looking at it really, because you’d think that the family would be needing the support and the strategies to cope from other people, but it’s usually the other way round.
You made a complaint about one of the specialists. Who was that and why did you complain?
We weren’t happy with one of the specialists who dealt with Laura’s case because she’d already written papers. We felt that she basically wasn’t very sympathetic to the idea of hysterectomies for girls. In Laura’s case, we just didn’t think that. We could see that she had an opposite point of view to us and yet she’d never really met Laura and I think without actually living with that child, you don’t really know what it’s like and what you’ve been through. I find even with my parents who have had a lot to do with Laura in the past, they don’t necessarily fully understand what it’s like to live with her. You have to be there and to live it, to really know, and I just don’t think she was very sympathetic to what we’ve been through with her and what Laura has been through.
Who was that?
That person was Dr Sonia Grover.
One of Grover’s complaints or reasons, can I just read to you and get you to respond: “I do not feel comfortable leaping to the most invasive approach at as first move when I don’t have a clear idea of the extent of the problem, particularly if there’s a straight forward way of achieving a no bleeding or minimal bleeding-only state. There appears to be little reason to expose Laura to risks and trauma of surgery and hospitalisation as there is no clear evidence yet that this intervention is required”.
I think with Dr Grover, she’s thinking that a hysterectomy is the most invasive thing that would stop the bleeding. To us it’s equally invasive or if not more to have her on medication for years and years and years to stop that bleeding. It also requires a lot of input from other people, whether it’s us or other people in the case of the pill, its every day for life. I don’t think they want her on it for life, they think they want some periods in between times but then if she goes say 9 months without a period and then suddenly has a few periods, that’s going to be almost worse for Laura because it’s getting her out of that routine, it’s going to have to be starting something all over again and what Laura needs is consistency in her life.
Now the Guardianship Board decided that there were other viable alternative treatments and they said that one of those treatments would be the contraceptive pill or the Mirena device – an IUD – can you talk about that and why you don’t think they would be suitable?
With the pill and the Mirena we weren’t totally happy. Again we’ve been very careful with drugs with Laura. Going back to the vaccination, you know she had a safe vaccination and she became disabled. She was on anti-psychotics last year, which we ended up having to take her off because she had side affects; she had a lot of mouth twitching which thankfully has stopped since she’s been off it. So we’re wary of drugs to start off with. The pill to me hasn’t been fully established that it’s completely safe. I think the jury’s still out on it. The Mirena is a new device. I believe it’s been used for about 10 years but to me that’s still not long enough to say that it’s completely safe. She’d have to have an anaesthetic every five years, which there’s a risk with an anaesthetic every time you have it so to me that’s not really an option either. It’s just the safety, We’re just not happy with it and if it really needs to be used for such a long length of time that I just don’t see how it can do Laura any good.
And would menstruating stop with the use of these devices?
Menstruation wouldn’t necessarily stop, it might slow it down, there might be some spotting, there might be irregular bleeding but you just don’t really know. Basically you’re treating Laura as a guinea pig.
Why not wait until Laura’s a bit older and make these decisions?
We just feel that Laura’s so vulnerable now, she’s vulnerable all the time. There doesn’t seem to be a lot of point in waiting when we already know that the prognosis for her isn’t good. So we feel that we should try and get it done now so that she has the longest benefit from it and she can have the best quality of life now. We don’t see the point of waiting for a few years and letting her suffer when she doesn’t need to.
So was the Guardianship Board’s decision fair?
I don’t think they looked at the case on its merits. I think they decided first and I think they had their own opinions and while they listened to us, I don’t think they heard what we were saying.
We interviewed someone from the Disability Lobby who said never ever, under any circumstances, should anyone with a disability be sterilised. What would you say to that attitude?
I think it was probably somebody who had never experienced living with a child who is so disabled. I suspect that these people would have a different view if they had to live with it. I know that most of the people that I know around town, they’re absolutely horrified that the decision was turned down. They can’t understand it because you know they just sort of think as a matter of course that, oh well she’ll have to be sterilised and they just can’t understand the process. They can’t understand that the parents and the families are put through so much and then turned down at the end of it.
Can you tell me what difference you think Marion’s case has made to the whole issue?
Marion’s case has made it harder for children who are very severely disabled to get the sterilisation. I think it’s made it a lot harder for the families. I just think that it’s the children who are going to suffer as a consequence, and it’s all very well for the guardianship board to make these decisions, but then they go back to Hobart or wherever and they can just get on with their lives. We have to pick up the pieces.
Has Marion’s case ultimately removed the rights of parents?
Yes, Marion’s case has removed the rights of parents. I really believe that the parents just have no say. We have no rights; we have to look after the child. If we feel that something like this would make the child’s life better, we’re just ignored and from the hearing I think a lot of our responses were just rubbished and there was no respect for the parents, no respect for the family, no respect for the child whatsoever.
So just political correctness?
Are these sorts of decisions forcing parents to get illegal sterilisations?
I would say that these decisions are forcing parents to get the sterilisations done illegally. And I can quite understand parents doing that too. You get desperate; you’re desperate to help your child. It’s not something you take lightly. You go through another grieving process for your child when you make this decision because you’re having to acknowledge that your child is so disabled that they cannot cope on their own with the menstruation. They’d never be able to cope with a pregnancy. You never have grandchildren from that child, they will never have a normal life and that is, it’s very, very hard to take. You have you know you really do go through that grieving process again. It’s like when you first get that diagnosis and you cry, and again you reach this decision and you cry.
How much have you cried?
Heaps. There’s one time going through the whole process I just spent a day in bed and I just cried and cried and cried and it took me probably about three weeks to get over that and it was only that I made myself get out and do normal things and I had my other two children to think of that you just have to pick yourself up again.
Are you a good parent?
What is a good parent? I do my best for my kids, my kids come first. You want to do everything in your power to make them happy, you know they’re your life.
How much do you love Laura?
I love her to bits, love Laura to bits. She’s my daughter. There is nothing that we wouldn’t do to try and make her life better for her and I think especially feeling that with the vaccination it was our decision to vaccinate her, we feel that we’ve let her down a little bit even though I was told it was safe, that you should be able to trust the doctors on that one. But still I made that decision to vaccinate so from that point of view, you just want to do everything to try and make it up to her and to make her life as happy as you can. There’s nothing we wouldn’t do.
Would you consider getting Laura illegally sterilised?
I don’t know about getting her sterilised illegally. Who knows what the future holds, I couldn’t say. I’d be very concerned that I’d want a good doctor to do the operation. I’d be concerned that that might be compromised. I can certainly understand parents who have done it illegally.
But you wouldn’t be concerned about breaking the law; you’d be more concerned about Laura’s interests?
I’m more concerned with Laura’s interests for sure. Laura comes first I mean I’d rather the law said yes obviously, but I think under the circumstances, I think the law has to be changed. I think they have to take each case on its merits and I don’t think they’re doing that at the moment.
What do you think of doctors who sterilise these children knowing they’re breaking the law but because they actually believe they’re doing the right thing?
I think doctors who do it illegally, who sterilise children illegally, I think they’re very courageous. They’re risking a lot for sure, and I would think if they’re taking that much of a risk, they must be putting the child first.
Why didn’t you go to the Family Law Court?
We didn’t go to the Family Law Court because we believed it was a lot more expensive and it’s not the sort of money that most families including us could just find. We’ve put everything into this house, we’ve set it up to make Laura’s life as good as possible and to make the other children’s lives as good as possible, and so basically you put all your money into that sort of thing. I didn’t want to put money into administrative things, which I felt was would be the case and I’d rather spend the money on getting her a good doctor to do an operation and there’s a limit to the amount of money that people have. Although I believe that it would be easier to get a different decision for Laura, it just seems very unfair. There are different rules for the Family Court and the Guardianship Board and that just doesn’t seem fair because it seems one rule for the people who can’t afford to go to the Family Court and another rule for those who go through the Guardianship Board.
So you see the Family Law Court as being more flexible?
I would say the Family Court’s more flexible. I would say that they certainly look on each case on its merits more and I think they’d explain the judgment a lot clearer. The Guardianship Board in their judgment gave us about 6 lines and to me that’s not good enough.
In the Guardianship Board’s summary they said they opposed a hysterectomy on a number of grounds and if I could just read these to you and get you to respond. They said that there would be risks with the surgery, that Laura may suffer menopause, she may need hormone replacement, there’s a risk of osteoporosis, fatigue and depression, heart disease and loss of bladder control. Can you talk about that?
I believe there are risks with everything you do in life. There are certainly risks with surgery, I think as parents we have to weigh up very, very carefully the pros and cons of each issue, each path we look at and as parents I believe we’ve tried to make an informed choice. I don’t think there’s anybody who really knows what the best thing to do is but as a parent all you can do is look at your child, look at the facts and just weigh it up yourself and basically you were being asking to make the best of a bad decision. You know you have to make the best decision but none of them are decisions that you want to make for your child, especially at this age.
One mother said to me no mother wants to sterilise their daughter.
No, it’s the last thing on in the world that you’d choose for your child, to sterilise, it’s the last thing. Again, you know you have to go through that grieving process again, it’s accepting that your child is so disabled that they’re never going to be able to cope on their own. I know every time Laura has a period I just feel for her because there’s that total loss of dignity for her, you know having somebody else there all the time with such an intimate need. You sort of wonder if she was normal, what would she want? You know if she could tell us, what would she want.
Does Laura have any sexual inclinations?
She doesn’t seem to have any sexual inclinations at the moment as far as boys go at school and that sort of thing, she couldn’t care less.
How does it affect the other siblings, her brother and sister?
Mark and Joanna are affected a lot. They’re restricted as to what they can do because it always depends on Laura, Well, they don’t do too badly but for example I suppose if Laura has a big tantrum, my son Mark, he’ll often come to my rescue and it’s really hard because he’s trying to rescue me and I’m trying to say to him look don’t get too close, I don’t want you to get hurt and it’s just so hard. Joanna sometimes, if Laura doesn’t cooperate in the morning, Joanna’s a bit late for school and she doesn’t cope very well with that, she gets very upset. There’s a couple of times where she’s gone to school and she’s just in floods of tears and yeah it’s really tough on them. It’s very tough on them.
They’ve hidden under the beds?
In the early days when Laura was having sort of tantrums most of the day, they used to get attacked and of course they were younger then. If Laura was about 3, so Joanna would only be about a year old, and Mark was a bit older than Laura but still they were just terrified, absolutely terrified.
What will happen to Laura when you and Stephen pass on?
I dread to think what will happen to Laura later on. When we’re not there. I guess it’s one of those things that you’re too scared to think about. Yeah, the future is a very scary thing for her. It’s scary for us to think about, it’s just so uncertain for her, you don’t know what help’s available for her and knowing that she needs that life long care, you worry about who’s going to be caring for her and will they care for her? I just think that the parents are the people who really do the most caring and I just don’t like to think about it.
But having Laura sterilised would have at least, you know discounted a couple of those concerns.
I think having the sterilisation would help, you at least can get rid of the pregnancy side of it in the equation, but still there’s an awful lot to think about. That’s just one part of the case.
Why is there so much sexual abuse against people with disabilities?
I think a lot of the sexual abuse with the people with disabilities occurs because there’s they’re just so vulnerable. Like in Laura’s case, it could easily go unnoticed. Unless there was an obvious physical sign, she can’t tell us or anyone else if anything’s happened and she might tantrum or something, or she might laugh, you just don’t know how she’s going to react because children with this condition have such abnormal responses to things. You know she might hurt herself and laugh and it’s just such an abnormal response so you just don’t know how she’s going to respond to things.
Last night we got some beautiful pictures of you and Laura in the kitchen in what seemed like a very intimate moment, can you describe what actually was happening there?
Laura likes having cuddles but she can’t give me kisses so she tends to sink her teeth into my forehead and her teeth are pretty sharp! But I just think well if she’s sitting on my lap and she’s giving me hugs, even if she puts her teeth into me, at least she’s kind of trying to show me that she loves me.
And you love her?
I adore her. Yeah. She’s my daughter.
What would you say to critics who say you have no right to play God?
I feel that we are Laura’s parents. I think if critics haven’t lived with the child, they don’t know the child, they don’t know the history of the child, and I think if you don’t, if you haven’t lived through the experiences that we’ve lived through with Laura, they don’t know. They they’ve got no way of knowing. They can look at any number of reports but nothing compensates for living through that experience.