It is not easy to belong to an unfashionable minority in lovely Luxembourg. One reason seems to be that there are still deep misunderstandings at the very highest level of government around the concept of disability.
When during the press conference on February 12th the Prime Minister referred to adults with Down syndrome as “Erwuessener déi un Trisomie 21 leiden”, a red light should have gone on as Mr Bettel seems not to distinguish between illness and syndrome, between a disease and a lifelong condition. Does this reflect deep-seated official assumptions and attitudes towards disabled people? – I hope not.
Language does matter in this area, perhaps more than anywhere else, as it reflects the way we relate to ‘otherness’. If you are born with Down syndrome, you are born with an extra partial or whole copy of chromosome 21. The presence of the additional genetic material means that you will have a learning disability and are likely to have mild to moderate cognitive delays. You may also have a number of distinctive physical features, but you are not ill.
In this context, UK organisations that defend the rights of people with Down syndrome take a lead in providing guidelines on unacceptable language and on suggesting alternatives. Thus, the National Down Syndrome Society (NDSS) offer a Preferred Language Guide on their internet site. And one of the key points they insist on is that: “People have Down syndrome; they do not suffer from it and are not afflicted by it.” The NDSS then encourage you to download their guide and distribute it to others. This is not political correctness gone mad; it is a move meant to ward off awkwardness and prevent anyone from sounding patronising or prejudiced. Ideally, of course, disability ought to be accepted by everyone as part of human diversity. After all, our own experience teaches us again and again that it is perfectly normal to be different.