In January of this year, the case of a young disabled woman in Seattle who underwent serious non-essential medical procedures at the wish of her parents, divided opinion internationally and triggered a huge ethical and human rights debate.
Known only as “Ashley X”, this disabled nine-year-old girl with complex support needs underwent what many would consider highly invasive operations including; a full hysterectomy, the removal of her breast buds, and hormone injections to ensure she would never grow into an adult. Many argued, as Scope did, that these interventions benefited her parents more than they did Ashley (they said she would be easier to care for). At the time we raised concerns that a similar case could happen in the UK.
Shortly after the Ashley X emerged, a similar case in Britain came to light with a mother, Alison Thorpe, seeking to remove her daughter’s womb in order to spare her the discomfort of menstruation. Nine months on, Ms Thorpe has the backing of surgeons who now are seeking legal consent to carry out a hysterectomy on Katie, a 15-year-old with cerebral palsy.
Scope recognises that it can be tough bringing up a disabled child and that parents often have to make difficult decisions. We work with tens of thousands of disabled people and their families each year and are acutely aware of the challenges they face every day in caring for their children.
However we believe this surgery to be a fundamental abuse of Katie’s human rights and indeed an unnecessarily extreme and disproportionate medical intervention to manage menstruation – which after all is just a natural part of developing into a woman.
This case raises fundamental ethical issues about the way our society treats disabled people and indeed illustrates a profound lack of respect for disabled people’s human and reproductive rights. No-one would countenance a hysterectomy that was not medically necessary for a non-disabled woman.
Scope is deeply concerned that doctors are supporting the parents in this case. To all intents and purposes this is enforced sterilization and, if approved, could set a legal precedent that would have alarming repercussions for young disabled girls across Britain.
Our stance is entirely in accordance with United Nations Convention on the Rights of Persons with Disabilities which was signed by the UK in March. Article 23c of the Convention makes specific reference to the protection of disabled people’s reproductive rights, stating that disabled people should ‘retain their fertility on an equal basis with others’.
Britain has signed up to the UN Convention, indicating that it supports the principles enshrined in the treaty. Scope is lobbying the Government to ratify this so it impacts on British law and gives disabled people better protection. The case of Katie Thorpe powerfully illustrates why this is urgently needed.
Scope is taking a strong stance on this issue because we believe that subjecting a child to a non-essential hysterectomy could never be considered to be in her best interests. A hysterectomy is an extremely invasive procedure, it would be particularly painful and distressing for a child, and we do not believe it can be justified.
A key question in this complex case is who is really representing Katie’s wishes? The wishes of her mother and the medical professionals consulted are clear, but what about those of Katie herself? It is obvious to us that the wishes of parents do not necessarily match the best interests of the child in every situation.
Scope believes all disabled people should be entitled to an independent advocate who can use their specialist skills to ascertain and communicate views and preferences they may find difficult to communicate themselves.
We do not believe that a child should be modified for society’s convenience, but instead that society needs to adapt and become more inclusive of disabled people. We want Government to introduce additional legal safeguards – including a duty to seek court approval for any invasive non-essential surgery and the right to an independent advocate for any child or adult in this situation. There needs to be clear framework in place for dealing with ethical decisions of this complexity, which places the rights, and best interests, of the disabled person at the heart of any decision.