My expert witness statement in support of the High Court legal challenge by Heidi Crowter and Máire Lea-Wilson | by Katrina Scior

In response to the disappointing judgment by Lord Justice Singh and Mrs Justice Lieven in the UK High Court in the case brought by Heidi Crowter and Máire Lea-Wilson against the UK Government, I have decided to make my expert witness statement (written in support of their case) public. The judges rejected Jason Coppel QC’s argument (based in part on my evidence) that institutional stigma such as that inherent in section 1(1)(d)of the 1967 Abortion Act has a powerful role to play in either countering or promoting and maintaining negative stereotypes, prejudice and discrimination (experienced by people with Down’s Syndrome and learning disabilities resulting from other causes). They also rejected evidence by Professor Richard Hastings on the negative impacts of such stigma upon persons with Down’s Syndrome. The judges concluded that s.1(1)(d) does not perpetuate and reinforce negative stereotypes to the detriment of people with disabilities. They also rejected the suggestion that there is any causal connection between this legislative provision and discrimination that continues to be experienced by people with Down’s Syndrome – something Heidi Crowter and Máire Lea-Wilson know from first-hand experience (and researchers like myself from scientific evidence) to be blatantly not true.

Pro disability rights and pro choice

Those assuming that anyone fighting for the law on abortion to be changed to result in fewer abortions of unborn children presumed to have Down’s Syndrome, should be forgiven as the general discourse is one of pro-choice OR pro-life. As someone proud to call herself a feminist, I can live comfortably with supporting women’s right to choose while also supporting people with disabilities and their families in their fight for equal rights. In any case, in sections 1(1)(a) and (b), the 1967 Abortion Act offers legal provisions that protect the rights of pregnant women and allow abortion up to the moment of birth where there is a risk to the pregnant woman’s mental or physical health.

I fully recognise that not all parents have the resources to raise a child with a disability, given the extra demands this often brings. It is often very stressful to find a nursery or school that is able to meet the needs of a child with special educational needs, and many parents (usually mothers) have to give up work to look after their disabled child. Without a doubt the emotional demands on parents (and siblings) are often intense. To my mind though the solution cannot be to offer exceptions to legal provisions on abortion in cases such as Down’s Syndrome but to improve services and provision for disabled children and their families, to support parents and siblings, and to challenge widely held beliefs that having a child with Down’s Syndrome is nothing but a heavy burden for those “unfortunate enough” to be the parent or sibling of someone with Down’s Syndrome. The images last winter of Jo Whiley, the BBC DJ, deeply worried that her sister who has a learning disability, might well die from Covid tell a very different story. Viewers witnessed that Frances, Jo Whiley’s only sibling, was clearly loved and cherished by her sister and parents, and that her family were in despair in the way the families of other seriously ill Covid patients were. The idea, still deeply held in many parts of our society and enshrined in section 1(1)(d) of the 1967 Abortion Act, that the lives of people with disabilities such as Down’s Syndrome are so terrible that they are not worth living, is also powerfully challenged in a film featured in the Sunday Times (courtesy of Don’t Screen Us Out), days before Heidi’s, Máire’s and Aidan’s case was heard in the High Court in July 2021.

I’ve often heard that people like the actor Sally Phillips, who has used her public profile to campaign tirelessly for the rights of people with learning disabilities, are very ‘privileged’ and that their experiences of parenting a child with Down’s Syndrome (Phillips’ teenage son Oliver has Down’s Syndrome) cannot be compared to those living in more deprived circumstances. Again, I would argue that the answer is not to ‘allow’ abortion up to the moment of birth but to tackle the root causes of deprivation and offer better support to parents.

Introducing a 2018 report by the UCL Institute for Health Equity, Prof. Sir Michael Marmot noted that people with learning disabilities are more likely than the general population to experience “some of the worst of what society has to offer”, including low incomes, unemployment, poor housing, social isolation and loneliness, bullying and abuse. The NHS commissioned report recommended more action to reduce stigma and discrimination as means to improving lives and health outcomes for people with learning disabilities. This holds very much true for many of the people with learning disabilities who I’ve worked with over the years. It does not mean though that their lives are invariably terrible and burdensome and that they should have been aborted in utero but that our society must do more to respect and protect their equal human rights.

Why am I supporting this case?

I have worked with people with learning disabilities since 1986, initially as a youth worker for a small West London charity, later as an Assistant Psychologist at Normansfield Hospital in South West London, then as Trainee Clinical Psychologist at Bromham Hospital in Bedfordshire, and once I had qualified as a Doctor of Clinical Psychology in the mid-90s for the NHS in Newham, East London. During my days as a youth worker, we offered a range of activities to teenage girls with learning disabilities. On one occasion we took a group of 10 of them on a residential in Devon and in 5 days had more fun than any of us had had in a long time. At other times we’d take them swimming, go for a stroll around London’s China Town, or bake cakes and watch a movie together at the youth club’s base. A few years later, while working at Normansfield and Bromham Hospitals, life for the ‘patients’ I worked with was very different. The all-male wards I was assigned to in both institutions had dormitories for 20+ men, who ate their meals together at a time determined by the institution, dressed in clothes decided on by the nurses, and took their showers together with no right to privacy. This was in the early to mid-1990s when the UK was in the late stages of closing down large Victorian institutions like Normansfield and Bromham. But even in the 90s, society was still happy to lock people away in large institutions for years or decades, not because they had committed any crime but because they were born with a learning disability, or had acquired one post-birth. My sense that something was seriously not right in our society where people with learning disabilities are concerned stems largely from that time. I have been fortunate to have the opportunity through my work at University College London to support the fight for equal rights for people with learning disabilities.

How can you support this landmark case?

As Heidi and Máire are taking their case to the Court of Appeal, they are seeking support via Heidi’s crowdfunding page. In urging readers to give as generously as they are able to in this landmark case, I have no conflict of interest to declare – my support for the case is entirely on a pro bono basis.

Why pro bono?

Why am I and several other expert witnesses, some of whom like Professor Richard Hastings are world leading experts in the disability field, offering their time in this case pro bono? We do so because we are party to ample scientific evidence that our society gives people with learning disabilities a very raw deal, and that having repeatedly witnesses the terrible effects of this discrimination, and with the means and power to seek change have a moral duty to do so.