Parliament: Parliamentary Initiatives

Growth Attenuation

Adjourned debate on motion of Hon. K. L. Vincent:

That this council—

  1. Notes the recent New Zealand case of Charley Hooper, the now 10-year-old girl whose parents had her undergo growth attenuation treatment, meaning that she will now never grow over 130  centimetres tall, as well as a hysterectomy and ovary removal at the age of seven due to her disability;
  2. Notes that this case is not unique; in fact Hooper’s parents drew inspiration from the 2004 case of a child with disability in Seattle, known only as ‘Ashley X’, who was subjected to the same treatment;
  3. Notes that the use of growth attenuation and sterilisation as a response to disability is in fact known colloquially as The Ashley Treatment;
  4. Condemns the use of medical treatment on the ground of disability without the consent of the person on whom the procedure is to be performed, or significant evidence that the procedure is necessary as all other options, including additional supports, have been exhausted;
  5. Calls on the South Australian government to ensure that children and adults with disability in South Australia are legally protected from forced medical treatment (or the denial of medical treatment) without consent or consent by guardians who have a clear conflict of interest;
  6. Calls on the commonwealth government to ensure nationally consistent protections around growth attenuation and sterilisation of children with disabilities; and
  7. Calls for a total ban on such treatments for which there is no medical indication.

(Continued from 24 February 2016.)

The Hon. K.L. VINCENT: Just to sum up, I would like to thank those who have contributed to this motion, all of whom have indicated their support, and that is very much appreciated.

The Hon. Mr Wade reminded us of some very important factors, including the fact that Australia is a signatory to the United Nations Convention on the Rights of Persons with Disabilities, and I will elaborate on that in just a moment. He also reminded us that while SACAT approval would be required explicitly for sterilisation of people with disabilities, it is not necessarily or explicitly required for growth attenuation treatment. That is something that we need to be aware of, and we will work on that.

I am pleased to hear that I seem to fit the height requirements of Mr Wade’s example of women who are deemed to be too tall to be a suitable bride, such that if my ethics should ever change so drastically that I wished to become a bride, it is comforting to know that I have the option. Of course, while that is a somewhat comedic example, it is also a very important one. It shows us how our cultural values as a society and as a community can alter drastically, and I would hope very dearly that in the near future we will look upon the forced sterilisation, in particular, of people with disabilities as something to be dismissed outright in the same way that I hope we would all now dismiss outright the idea that women should be stopped from growing to a certain height in case that stops them from being desirable brides.

The Hon. Mr Wade also pointed out that the Australian Medical Association (South Australia) branch does oppose the use of this treatment where there is no medical indication, aside from the disability, and on that I would like to add a few remarks. Firstly, I would like to put on the record a couple of comments relating to Ms Charley Hooper. My office has been in contact with the mother of Charley, Ms Jenn Hooper, who has stated that she believes I have made incorrect comments regarding the hysterectomy that Charley underwent.

So, I will put on the record again that Charley did have her uterus removed but add that, based on information that I have since received from her mother, Charley showed signs of precocious puberty at the age of four and that by the time she was seven (as her mother puts it) she had a full‑sized uterus in the body of a seven year old. Her mother has advised that this put her at risk, if she did menstruate, and that the removal of her uterus was for this reason. Her mother was advised that the procedure was medically necessary because of that condition.

As I have stated in my motion, as other speakers have pointed out, where there is a situation where the treatment is medically indicated, it is appropriate and should be respected. Ms Hooper has also stated that I put nothing on the record about the positive effects of oestrogen therapy for non‑weight bearing children, in particular, in terms of increasing their bone strength, therefore reducing their risk of developing conditions like osteoporosis.

Her mother advises me that it was clear that Charley experienced a reduction in her pain after three days on oestrogen therapy and that she has had no seizures since; further stating that subsequent to therapy complete cessation of Charley’s epilepsy occurred, which was previously manifesting in some hundreds of seizures a day. I reiterate that where the procedure is proven to have medical benefit and be medically necessary I would support that, and again I would like to make that clear.

When I introduced this motion I spoke somewhat about the cases both of Charley Hooper and Ashley X, in New Zealand and the United States of America respectively, which prompted me to have this philosophical discussion and put this motion up for debate here in South Australia so that we can prevent this from happening unnecessarily in this state. Let me make it very clear why I took this action. I was elected as a member of parliament representing Dignity for Disability, a political party established with human rights at its very foundation.

People with disabilities in this country often—too often—have had our rights, our autonomy, our agency, our ability to be seen as a person first and not just our disability, taken away from us far too often. Yes, we have had many positive strides, among them the Disability Justice Plan, the rollout of the National Disability Insurance Scheme and a decrease in the institutionalisation of people with disabilities, at least no longer occurring in the same fashion that it did quite commonly only a few decades ago.

I put this motion forward to this parliament as an example of just how far we have yet to go because still every day my office works with constituents who do not have access to basic equipment, accommodation, education, employment services or other needs met. We do not have a single accessible changing place toilet here in South Australia which may make it easier for people with conditions, such as the people we are talking about, to live their lives. Students with disability still face exclusion and bullying all too regularly but, of course, one incident of bullying is too many.

It is seen as a revolution when universal design is incorporated in any way in our planning laws, despite the fact that this very term is used in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). As I said earlier (and other speakers have as well) Australia is, of course, a signatory to this convention and further signed on to the ratified protocol. Providing access to the community, to life and to everything else people with disabilities should have access to is not about making us feel good as a society, it is our international legal obligation under the UNCRPD.

I take incredibly seriously my role in advocating on behalf of all South Australians, particularly those with disabilities, conditions, illnesses and other circumstances which may increase their susceptibility of being subjected to irreversible medical conditions or treatment before it is medically indicated, especially where they are not able to consent and their future ability to consent may not have been established. Please note very plainly that while this is not about individual cases, I do want a South Australia where it is ensured that this procedure is banned, again, where there is no clear existing medical indication.

There are many articles from the UNCRPD that support this, including respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. That is, and I reiterate the same point I made in my original speech, that it is the right of children, whether or not they are disabled, to grow up to their potential physically, emotionally and mentally. Of course, the UNCRPD also reminds us of our obligation to ensure that children with disability have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and their maturity on an equal basis with all other children and to be provided with disability and age-appropriate assistance to realise that right.

The UNCRPD also tells us that every person with a disability has a right to respect for his or her physical and mental integrity on an equal basis with all others, as, of course, the Hon. Mr Wade, in particular, in his contribution has reminded us.

Finally, touching briefly on Article 25, which pertains to health, we, of course, are reminded that we are obliged as a society and as a signatory to the UNCRPD to ensure that persons with a disability have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability, and take all appropriate measures to ensure access for persons with disabilities to health services that are gender sensitive, including health-related rehabilitation. This includes requiring health professionals to provide care of the same quality to persons with disabilities as others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care.

As you can see, all of those articles and sections that I have touched on and potentially some more within the UNCRPD make crystal clear points about the rights of people with disabilities, but it is important to remember also that these are not simply statements. The UNCRPD and any other United Nations’ convention for that matter does not achieve rights in and of itself. Members will recall that when I introduced this motion I raised my concerns about a response I had received from the Minister for Health stating his belief that existing measures like SACAT and the UNCRPD provided adequate protection for people with disabilities against this treatment without medical indication. That is me paraphrasing and I hope I have not misquoted the minister.

My point is that the document, the UNCRPD, is just that and it is incumbent on all of us and we are all obliged to make sure that we use that document as guiding principles—guiding principles for actions that must be taken because these rights are not met and these obligations are not met simply by our becoming a signatory. The work is only beginning. There is action that must be taken, so if we do not keep the UNCRPD and all other relevant human rights documents at the front of our minds at all times and actively discuss them through public discourse on a regular basis, we may well see our rights eroded. It is not without constant surveillance and discussion that we maintain our rights.

With those words, I commend the motion to the chamber, and again make it clear that what I am seeking here is not a personal attack on any one person or family, but a discussion about how we as a parliament and a society maintain our international obligations.

Motion carried.