Friday, 22 March 2013

Why we need a Down syndrome liberation movement

Is that a single palmar
For too long people with Down syndrome have been excluded – for too long people with DS have fallen through the gaps in society. Exclusion in many forms has brutalised and dehumanised, stigma has marked out and placed people with DS in the position of 'burdens'.

Disabled activist Sunny Taylor has written that 'disability is a political issue not a personal one'. There are many active disabled rights groups and some important victories have been won - although there is much more progress to be made. However learning disability – with DS being the largest constituent, has been largely sidelined from these campaigns, unintentional though that is. Disability activism is often atomised by individual conditions and necessary battles.

We're in a position now whereby the specific political interventions needed by people with Down syndrome are not being addressed. The likely roll out of an early stage blood test in screening for example.

Now you could argue that I don't have Down syndrome so therefore my views are invalid – that's a fair point, it also isn't very realistic. The political demands I would make are ones that I make as a human being, standing next to an equal who is facing prejudice and ignorance.

If you look at the meaning of charity you get the following words as definition; alms - mercy - beneficence - benevolence – philanthropy. Ever since Dr Down identified what he saw as a racially degenerate condition in his Asylum for Idiots too much has been left to this handing down of help. Charity is about handing down, it seems as very Victorian an institution as Dr Down himself.

Some very beneficial work has come from charities in the last few decades – I won't deny it – that's not to say more political progress hasn't also been sidelined by this as the principle approach to furthering the causes of people with DS.

What charity doesn't do is challenge. It has a vested interest in the status quo, they cannot by definition challenge politically, they cannot alienate their generous donors by poking at authority and riling people with uncomfortable truths.

Liberation movements have a strong tradition of taking action for outsiders who 'don't count' whether due to sex, race or ability – often excluded from the labour market and seen as worthless. In a week when the British Chancellor of the Exchequer asserts the new budget is designed to benefit "those who want to get on and work hard" and the Prime Minister repeats endlessly "hard-working families" – many with Down syndrome would be fair to comment, 'chance would be a fine thing'.

Low expectations in society as a whole and a new record low belief in people's ability to achieve anything should not hold us back.

We need a movement that understands the political history and political position of those with Down syndrome and is able to advocate and challenge – as stridently as necessary. It needs to be built on a common set of beliefs and fight for them no matter what. It also needs to take shape in a very particular form – not for me to define, however I think it should be said that working together, people with and without Down syndrome. Attitudinally a good example is the Gay Lesbian and Bisexual group Stonewall - with no issues with causing offence if necessary and effective interventions they have made a huge impact.

I imagine rock climbers picking their way up a difficult peak, linked together, helping each other progress to their ultimate goal.  

1 comment:

  1. Thank you for articulating this fair better than I could. Really great.