The interests and rights of disabled children must come first in any decisions affecting their lives and long-term care.
Parents and carers of disabled children are often daunted by the thought of what will happen when their child grows and matures.
There are many cases where families seek to medically manage this process. One example is the US case of Ashley X. Ashley was a profoundly disabled six-year-old child when her parents and doctors successfully argued before an ethics committee that the family would not be able to look after her as she developed into adulthood.
Doctors performed a hysterectomy and mastectomy and administered high levels of oestrogen to stunt her growth.
UTS Law Professor Michael Thomson’s latest co-authored research focuses on Ashley X and what has become known as the Ashley treatment. He says the idea that this intervention is acceptable to make care easier is deeply problematic:
Disabled children and adults are the subject of decisions which in other contexts would undoubtedly be deemed abusive and legally impermissible. It is difficult to identify another scenario in which law or medical ethics would sanction such radical interventions.
Professor Thomson’s work focuses on the principle of ‘bodily integrity’ which is a core value across a number of different areas of law:
It means the right of each person, including children to autonomy and self-determination over their own body. Under this principle, physical intrusion without consent is a violation of human rights.
The research makes a strong argument for the concept to be expanded and strengthened to one of ‘embodied integrity’; accepting the importance of lived experience and the right of children to self-determination in later life.
Professor Thomson says that non-therapeutic actions that limit the options a child should have when they reach adulthood should not be permitted:
The child’s right to embodied integrity must be the starting point for best interest assessments ... In order to counter the construction of disabled people as objects… it is necessary to prioritise the child’s interests in this way.
He argues that at the same time we respect the rights of disabled children it is essential we better support those who care for disabled children and young people.
Further reading: 'A Jurisprudence of the Body', Palgrave Macmillan, 2020 - Chapter 12: 'Embodied Integrity, Shaping Surgeries and the Profoundly Disabled Child', Fox, Thomson and Warburton.
(Professor Thomson is one of the three editors of this book and UTS Law's Dr Karen O'Connell and Professor Isabel Karpin also co-author a chapter.)