The involuntary sterilisation of children with disabilities

http://www.guardian.co.uk/commentisf...lia-disability

The involuntary sterilisation of children with disabilities should be challenged

I'm lucky that as a child, my parents didn't follow our doctor's advice and put me through a hysterectomy. Many disabled women haven't had that chance
When I was four years old, a doctor advised my parents that I should undergo a "routine" hysterectomy. It was recommended, the doctor said, to prevent the future inconvenience of menstruation. My parents, thankfully, were horrified and high-tailed it out of there, taking me and my four year old uterus with them.

I learnt of this story as a teenager, after meeting another woman with the same genetic condition as me who had undergone a hysterectomy at the recommendation of a doctor and the consent of her parents. She experienced ongoing physical and mental health issues throughout her adult life as a result of the procedure.

It’s been easy for me to share my story; I had a lucky escape. But for many women, the thought of speaking publicly about what happened to them is unthinkable. While simply possessing a uterus doesn’t make you a woman, having yours taken from you without your consent can certainly cause you to question your identity and security. Many women I’ve spoken to who have undergone such procedures feel a deep sense of shame and violation.

In recent months, it has become crucial for Australian women with personal experience of involuntary sterilisation to speak out. A Senate committee on the involuntary or coerced sterilisation of people with disabilities in Australia has been sitting for 10 months and has just handed down a list of recommendations. Chief among them was that sterilisation of people with disabilities without their consent should be banned, unless it can be proven that their capacity to consent will never develop.

While the inquiry and the extensive recommendations are very welcome, we have to ask whether these recommendations go far enough to protect women with disabilities from sterilisation procedures that constitute extreme human rights violations.

The notion of consent in these cases can be a very difficult one. In 2007, Australian disability advocate Anne McDonald wrote about the controversial case of Ashley X. At the age of six, at the request of her parents and after the authorisation of her doctors, Ashley had undergone a full hysterectomy, growth attenuation therapy (to keep her small and convenient for her parents to carry around) and the removal of her breast buds to prevent her future development. Due to her severe disabilities and their decision to keep her small and childlike, Ashley’s parents called her their "pillow angel".

Ashley would have been assessed as not having the capacity to give consent or to develop that capacity in the future. So would Anne McDonald:

Like Ashley, I can't walk, talk, feed or care for myself. My motor skills are those of a three-month-old. When I was three, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution... [that] didn't provide me with a wheelchair, [so] I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabelled as profoundly retarded (IQ less than 20) because I still hadn't learned to walk or talk.

It wasn’t until Anne was 16 that she was taught to communicate by pointing to letters on an alphabet board. Anne’s communication was laborious and slow throughout her adult life, but she went on to earn a university degree, write a book and advocate for people who couldn’t speak. She could just as easily have rotted away in that institution for the rest of her life, as many people did. “I’ve learned the hard way that not everything doctors say should be taken at face value,” Anne wrote.

Parents’ concerns about menstrual management are a common theme in the inquiry, and those in this situation understandably seek medical advice. But as Anne's story shows, this advice isn't always sacrosanct.

In their submission, the department of paediatric and adolescent gynaecology at the Royal Children’s Hospital in Melbourne pointed out that while menstrual suppression might be of benefit to some women and girls with disabilities, there are many non-invasive methods to achieve this. They also identify that GPs and paediatricians are not necessarily well informed of the options. They cite an unpublished RCH study that found “a number of paediatricians felt that a hysterectomy was the first line option for menstrual management when given a case scenario.”

I’m extraordinarily lucky that my parents were not prepared to take the advice of doctors at face value. Many women I know haven’t been so lucky, and there is much healing to be done.

With so many doctors unsure of their options, it is little wonder parents seek such drastic and irreversible measures. It is the lack of education, social services and support for families and doctors alike that we should be addressing, not the state of women’s bodies.
----------------------------------------------------------------------------------------------
cosa pensate di queste cose sinceramente?