Ramandeep Kaur and Stephen Unwin fear new legislation will divide their children based on an old discredited medical model which pathologises disablity

Any legislation which defends the rights and champions the opportunities of a historically oppressed minority must surely be an unequivocally good thing. Standing up for people who have Down’s syndrome is something that all progressive and decent-minded people embrace wholeheartedly. Who could possibly oppose it?

The truth is, however, that a growing number of people – both with lived experience of Down’s syndrome and of other disabilities – are worried about the proposed law currently progressing through Parliament. And, as the mother of a boy who has Down’s syndrome and the father of a young man with profound learning disabilities (but not Down’s), we wanted to come together and outline some of our concerns. 

The Down Syndrome Bill has taken some of us by surprise. This is, perhaps, inevitable given the woeful lack of consultation involved in preparing the legislation.

Its stated aim is to “make provision about meeting the needs of persons with Down syndrome; to place a duty on local authorities to assess the likely social care needs of people with Down syndrome and plan provision accordingly; and for connected purposes”.

The private members’ bill, it seems, is the brainchild of a small group of media-savvy and self-confident activists who have done remarkably well to promote it and will, we fear, manage to get it through Parliament. After all, how many MPs without lived experience of Down’s syndrome would dare to oppose something that apparently supports so-called vulnerable people? Some of its supporters are parents of high-profile young people with Down’s, and the emphasis is very much on people with moderate learning difficulties. Indeed, many of these parents have fought for mainstream schooling for their children. 

The Down’s syndrome community is an extraordinarily diverse and contested place, both on social media and in the real world, with people from a wide range of backgrounds and views. But there has been very limited consultation with the vast majority.

The bill does have support from some people who have Down’s, but it feels very much like a tiny circle and is hardly inclusive. Even the long-established and much respected Down’s Syndrome Association wasn’t invited to be involved. And we have no sense of the consultation planned at the committee stage. 

The group did well to secure the involvement of Dr Liam Fox, an articulate and persuasive Conservative MP. Better known for his various ministerial faux pas, Dr Fox is an outspoken opponent of abortion who has never, as far as we are aware, shown any particular commitment to disabled people. Indeed, he voted to reduce funding to local authorities (the chief source of practical support) and opposed any increase in benefits to people who are unable to work as a result of their disability.

The bill’s champions have formed the National Down Syndrome Policy Group, but its activities have no clear charitable structure and there appears to be a lack of transparency about its funding, or a clear declaration of any potential conflicts of interest.

A handful of key figures reappear in the various groups cited as supporting the bill. They have attracted friends from all political parties, but we were not surprised to see committed Brexiters among their allies, along with members of the conservative think tank, the Bow Group. However, nothing prepared us for the sight of the deeply reactionary and xenophobic Turning Point UK lending its approval. The bill’s cheerleaders say that they cannot be held responsible for the nature of their supporters, but we are not aware of any statement distancing themselves: some have actively welcomed it.

The movement has built up a head of steam and is very active on social media. People with learning disabilities and their families who have expressed concerns have been directly challenged, as if questioning the bill was a betrayal of the cause, and there has even been the suggestion that they were not proper members of the “Down syndrome community” (the bill has adopted the American ‘Down syndrome’).

The fact is, however, that everyone who has Down’s syndrome is different, with different experiences, abilities and expectations, and there is a real danger in imagining that there is one homogenous group with one shared position and one shared set of needs. Such an important piece of legislation needs to gather the widest possible engagement from all interested parties if it is to make a difference. 

Turning the Clock Back on Progress

It might be possible to find a constructive way through this mess if there was much confidence that the bill would make any real difference to the lives of people who have Down’s syndrome. Instead, as several lawyers and advisors have pointed out, it adds no further protection beyond that which is already enshrined in law, and does nothing to bridge the gap between decent legislation and the grim reality on the ground.

You only have to look at the limited impact of the Autism Act of 2009 to see the problems of such legislation, and this bill is surely another such false dawn.

Dr Liam Fox’s speech in the House of Commons introducing the Bill was noticeable for its emphasis on the medical challenges faced by people who have Down’s. It showed little understanding of the broader issues faced by learning-disabled people. It was striking to hear him say that the bill offers a “legislative mechanism for redress” if services are not provided, but there was no sense of how this would be different from the (admittedly tortuous) existing system of judicial review or SEND tribunal. He also declared that it would set a precedent that could be followed later in other areas, implying that every genetic or chromosomal condition could, in due course, have its own legislation.

The fundamental problem with the Down Syndrome Bill is that, instead of developing policy in response to social need, it starts from medical diagnosis. In this way, it turns back the clock on decades of progress in asserting the ‘social model’ of disability – that it is society that needs to change, not the disabled person – and returns us to the old and frankly discredited ‘medical model’, which sees disability as a pathology to be understood and, at best, tolerated and pitied.

This fails to insist on society’s fundamental responsibilities and returns to a way of thinking we thought we had left behind. Indeed, the United Nations’ guidance for human rights states that “monitors should observe whether national legislation focuses on the prohibition of discrimination and the promotion of equality rather than on the categorisation of various disabilities”. The bill fails this in the most dramatic way imaginable.

What the bill will also do – we believe as an unforeseen consequence – is create further divisions within an already fractured and disadvantaged group and impose entirely unnecessary hierarchies and rankings among learning-disabled people. At its worst, it feels like its supporters are claiming that people with Down’s syndrome are, in some way, a better kind of disabled person – a more valuable kind – and certainly its supporters’ continued emphasis on high achievement at all costs creates a place where the less able can be conveniently forgotten about. 

The practical consequences of the bill are evident from the wording of its summary: “A bill to make provision about meeting the needs of persons with Down syndrome; to place a duty on local authorities to assess the likely social care needs of people with Down syndrome and plan provision accordingly; and for connected purposes.”

Thus, desperately stretched local authorities will be expected to regard people who have Down’s syndrome in a different way from others when it comes to assessing their social care needs. Legislation already exists to ensure that their needs are met – the real challenge though is ensuring that local authorities have the resources and political will to translate this into everyday life.

It is hardly surprising that the Local Government Association has raised concerns. And it is striking to note that, at a fringe meeting at the 2021 Conservative Party Conference, Dr Fox said that “the very first reaction from Government at all levels was ‘we don’t need this legislation because we’re doing all these things already'”. If this is the case, why worry about the legislation now? It is telling that the Government’s recent Social Care white paper made no reference to this bill or to people with Down’s syndrome. 

But it is the final phrase of the bill’s summary – “and for connected purposes” – which most gives us pause. The elephant in the room announced itself in no uncertain terms when Calvin Robinson insisted on Twitter that “next, we need to change abhorrent abortion laws”. Facts are stubborn things, however, and there are a large number of conditions mentioned on ground E forms – which permit late terminations – of which Down’s syndrome is only one. According to the Department of Health and Social Care, in 2020 there were only 14 terminations at week 24 or over of foetuses that had Down’s, which is only 2.02% of the total number of terminations of such foetuses, or a tiny 0.01 % of the total terminations on any grounds in England and Wales. If a change in legislation in this profoundly conflicted area is being sought, this bill is a horribly clumsy way of going about it. 

The point is, surely, that what is really needed is a comprehensive policy framework to ensure the rights and opportunities of all learning-disabled people, of all diagnoses and none (including, of course, their own reproductive rights). For, 20 years after the ground-breaking ‘Valuing People‘ government report, learning-disabled people (and everyone with Down’s has some degree of learning disability) face enormous challenges: in education, health and social care, as well as employment, recreation and a social life.

The vast inequalities exposed by the Coronavirus pandemic bear dreadful witness to that fact. It is a wide-ranging and properly financed approach to learning disabilities that is needed now, which protects the fundamental human rights of all people, however profound the disability and whatever the aetiology, not this divisive, partisan, and frankly insubstantial bill. 

For us, of course, this feels personal. Harry, 14, who has Down’s syndrome and learning disabilities, attends a special school and those caring for him are engaged in a daily struggle to ensure that society delivers the same fundamental human rights and opportunities enjoyed by other children. But the challenges Harry faces are no different to Joey, 25, who doesn’t have Down’s syndrome, and whose genetic issues remain undiagnosed.

What’s more, while it is true that Harry has some health issues as a result of Down’s syndrome, Joey has intractable epilepsy which requires a complicated regime of anticonvulsant medication to keep him safe. Are we to imagine a private members’ bill for undiagnosed people with severe learning disabilities, no speech and intractable epilepsy – for people like Joey?

Certainly, even in the past few days, we have seen pressure groups for other conditions making a claim for their own legislation. What our two beautiful sons have in common is far more than divides them. We fear that this backward-looking bill will simply tear them apart.

Some of the bill’s champions are aware of this danger. Their answer is that, by raising the profile of one particular group of disabled people, all disabled people will benefit. As one of them insisted on Twitter, “rise the tide and all boats will float”. But the brutal fact is that Joey and Harry, and the thousands of others with severe learning disabilities, have no boat. They don’t even have a life jacket.

This bill, welcomed by many for noble reasons, does little to improve the real lives of the thousands of people like Harry, and leaves Joey and so many others like him, even more exposed than ever. It should be struck out.


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