Australia - Walk in our Shoes
45 min 14 sec - 16 January 2004
Walk In Our Shoes
(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.
45 min 14 sec - 16 January 2004
Walk In Our Shoes
(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.