Imagine being told by your parents that you were having your tonsils removed — only to find out years later you’d had a hysterectomy. Or having a doctor laugh at you when you mention you’re sexually active.

That’s just two of the many confronting submissions to a Senate committee examining involuntary or coerced sterilisation of people with disabilities in Australia, which recommended in a report yesterday a tightening of regulations and the prosecution of parents who take their children overseas to be sterilised. That’s good news to advocates who say sterilisation should only be a last resort.

Disability advocate and editor of the ABC’s Ramp Up, Stella Young, welcomes the safeguards to reduce involuntary sterilisations. But she told Crikey a wider debate on human rights for people with disabilities is needed: “The fact that sterilisation is not seen as a last resort for people with disabilities, but just a logical step in the care of people with disabilities, is just appalling.”

One of the main arguments given for the sterilisation of women with disabilities (the Senate committee focuses overwhelming on women; involuntary male sterilisation appears rare) is that young women and their families struggle to cope with monthly menstruation. Senate submissions from parents discuss problems such as how their daughters refuse to use pads — or remove them in public, bleed all over their clothes, are unable to get help from schools or other carers in managing menstruation and are often upset by their own bleeding.

“I empathise with parents and carers who are struggling with these things, but permanently altering the bodies of women is not the answer to this problem,” said Young, noting there are plenty of non-permanent methods for reducing menstruation (such as the pill, contraceptive injections, IUDs, etc).

Kathryn Knight, the mother of a daughter with a disability, discusses in her submission the difficulties in talking about females menstruating and intellectual disability — the combination of the two makes it doubly difficult:

“If we put that [menstruation] together with disability, particularly intellectual disability, which is also abjected in our society, we have an intersection at a critical point about women’s bodily functions together with intellectual disability. That creates a very strong sense of abhorrence in our society. It is right to say that menstruation, for some reason, is considered to be worse than wee and poo because it is part of a woman’s very hidden bodily function … The sense of  abjection that we find when we put those two issues together is at the heart of what we are talking about.”

The committee’s examination of involuntary or coerced sterilisation also examines the wider topics of s-xuality for people with disabilities, medical professionals who are unaware of other methods of dealing with menstruation or just see sterilisation as the easiest route — and even the question of whether people with severe intellectual or physical disabilities should be “allowed” to have babies.

“We fear those people in our societies who are different, and we fear even more primal things, including menstrual blood and semen.”

One anonymous mother spoke passionately about how she felt that her own rights as a mother, carer and person were ignored by advocates who demanded her daughter should maintain the right to have a child, and yet failed to demand other rights:

“Many people may say that my daughter’s fertility is her issue and not mine but you would be wrong. You see, the way that mother’s like myself are expected to care for our children until we die, it does become my issue because I am totally responsible for my girl in all ways, and I will continue to be because society has washed their hand of the responsibility of children like mine …

What I don’t understand about our society is that when the issue of fertility and ‘rights’ comes up they jump up and down about my daughter’s “right” to have a child if she wishes to. But no one jumps up and down about her ‘right’ to be able to live independently (which she has no chance of doing in Australia at this present time because places just don’t exist). They don’t jump up and down about her ‘right’ to have a job or a meaningful adult life (because the money is not there to enable this for her). They don’t jump up and down about her being able to access affordable dental care (which she can’t as an adult with a disability). They don’t jump up and down about my life. Yes, you say it isn’t about me, but you are wrong. Our society makes it about me. Why don’t you protest about something that could improve my daughter’s life?”

Another submission, by Miriam Taylor, examines society’s attitudes to people with disabilities reproducing:

“We fear those people in our societies who are different, and we fear even more primal things, including menstrual blood and semen. I think it is that basic. It is a primal fear. The primal fear in our society is that we do not want different people to replicate.”

Most concerning for Young is the argument that sterilisation will help prevent pregnancy stemming from sexual abuse. It’s a theme that crops up throughout the Senate report, with parents terrified of the prospect of abuse — sexual abuse is a reoccurring issue in disability care facilities — and of their intellectually disabled child becoming pregnant. As one parent wrote in a submission:

“So don’t judge parents who make the decision to go overseas to have their precious children sterilized, because you don’t know the half of it. You don’t lie awake at night worrying about them being abused and getting pregnant, or how you are going to manage for the next day, week, month and year caring for them.”

Professor John Carter, a doctor experienced with intellectually disabled people and their parents, echoed the idea in his evidence:

“A lot of mothers that we know are concerned about the possibility of sexual abuse of their daughters and therefore the possibility of pregnancy.”

A staggering 80% of disabled women experience sexual abuse in their lifetime. However, as Young points out, sterilisation doesn’t prevent the abuse, it just prevents pregnancy from the abuse. “What’s worrying about using that as an argument is that it makes women more vulnerable,” she said. “That’s horrific for me. There’s no other group of people in society that we make responsible for abuse in that way.”