Hysterectomy an abuse of human rights

Removing the womb of disabled girl Katie Thorpe would constitute an abuse of her human rights and wo

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.

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The New Times: Brexit, globalisation, the crisis in Labour and the future of the left

With essays by David Miliband, Paul Mason, John Harris, Lisa Nandy, Vince Cable and more.

Once again the “new times” are associated with the ascendancy of the right. The financial crash of 2007-2008 – and the Great Recession and sovereign debt crises that were a consequence of it – were meant to have marked the end of an era of runaway “turbocapitalism”. It never came close to happening. The crash was a crisis of capitalism but not the crisis of capitalism. As Lenin observed, there is “no such thing as an absolutely hopeless situation” for capitalism, and so we discovered again. Instead, the greatest burden of the period of fiscal retrenchment that followed the crash was carried by the poorest in society, those most directly affected by austerity, and this in turn has contributed to a deepening distrust of elites and a wider crisis of governance.

Where are we now and in which direction are we heading?

Some of the contributors to this special issue believe that we have reached the end of the “neoliberal” era. I am more sceptical. In any event, the end of neoliberalism, however you define it, will not lead to a social-democratic revival: it looks as if, in many Western countries, we are entering an age in which centre-left parties cannot form ruling majorities, having leaked support to nationalists, populists and more radical alternatives.

Certainly the British Labour Party, riven by a war between its parliamentary representatives and much of its membership, is in a critical condition. At the same time, Jeremy Corbyn’s leadership has inspired a remarkable re-engagement with left-wing politics, even as his party slumps in the polls. His own views may seem frozen in time, but hundreds of thousands of people, many of them young graduates, have responded to his anti-austerity rhetoric, his candour and his shambolic, unspun style.

The EU referendum, in which as much as one-third of Labour supporters voted for Brexit, exposed another chasm in Labour – this time between educated metropolitan liberals and the more socially conservative white working class on whose loyalty the party has long depended. This no longer looks like a viable election-winning coalition, especially after the collapse of Labour in Scotland and the concomitant rise of nationalism in England.

In Marxism Today’s “New Times” issue of October 1988, Stuart Hall wrote: “The left seems not just displaced by Thatcherism, but disabled, flattened, becalmed by the very prospect of change; afraid of rooting itself in ‘the new’ and unable to make the leap of imagination required to engage the future.” Something similar could be said of the left today as it confronts Brexit, the disunities within the United Kingdom, and, in Theresa May, a prime minister who has indicated that she might be prepared to break with the orthodoxies of the past three decades.

The Labour leadership contest between Corbyn and Owen Smith was largely an exercise in nostalgia, both candidates seeking to revive policies that defined an era of mass production and working-class solidarity when Labour was strong. On matters such as immigration, digital disruption, the new gig economy or the power of networks, they had little to say. They proposed a politics of opposition – against austerity, against grammar schools. But what were they for? Neither man seemed capable of embracing the “leading edge of change” or of making the imaginative leap necessary to engage the future.

So is there a politics of the left that will allow us to ride with the currents of these turbulent “new times” and thus shape rather than be flattened by them? Over the next 34 pages 18 writers, offering many perspectives, attempt to answer this and related questions as they analyse the forces shaping a world in which power is shifting to the East, wars rage unchecked in the Middle East, refugees drown en masse in the Mediterranean, technology is outstripping our capacity to understand it, and globalisation begins to fragment.

— Jason Cowley, Editor 

Tom Kibasi on what the left fails to see

Philip Collins on why it's time for Labour to end its crisis

John Harris on why Labour is losing its heartland

Lisa Nandy on how Labour has been halted and hollowed out

David Runciman on networks and the digital revolution

John Gray on why the right, not the left, has grasped the new times

Mariana Mazzucato on why it's time for progressives to rethink capitalism

Robert Ford on why the left must reckon with the anger of those left behind

Ros Wynne-Jones on the people who need a Labour government most

Gary Gerstle on Corbyn, Sanders and the populist surge

Nick Pearce on why the left is haunted by the ghosts of the 1930s

Paul Mason on why the left must be ready to cause a commotion

Neal Lawson on what the new, 21st-century left needs now

Charles Leadbeater explains why we are all existentialists now

John Bew mourns the lost left

Marc Stears on why democracy is a long, hard, slow business

Vince Cable on how a financial crisis empowered the right

David Miliband on why the left needs to move forward, not back

This article first appeared in the 22 September 2016 issue of the New Statesman, The New Times