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