Sunday, November 22, 2009
Institutional rarism! Discrimination sucks
There is a new form of discrimination which I find myself a very reluctant victim of.
I spent years of my precious time trawling around the country training NHS managers and clinicians in anti-discrimination legislation, the DDA, racism, sexism, ageism, homophobia..you name it if they did it I told them not to or else. But I find now that there is a new enemy to fight namely rarism. But not only do the Government and the establishment blindly practice this, they set up large institutions to defend it and proudly announce it as a justification for their acts and omissions; with the law behind them or so it seems. Institutional rarism writ large.
To me: "Oh we couldn't have discovered that lump in your vein was a cancer not a DVT because you are extremely rare" so that's alright then (funny how quickly they found it in France perhaps rarism is less rife there).
To many fellow sufferers: "No fibroids are very rarely cancer so you mustn't worry" so by implication and experience, neither will we.
Being a rarity in other walks of life is not a bad thing. There are those Antiques Roadshow moments when the expert lovingly feels the object and slathers the words: "this is an extremely rare object" and no matter how hard they try the proud owner cannot keep that look out of their eyes which means they are mentally licking their lips and rubbing their hands.
But in the world of illness forget it! What you have is rare so my conscience is clear that I never found it; or looked for it or looked at you for longer than five minutes. What you have is rare so no, no-one is investing money in drugs to try to save you, why would they bother, what's in it for them? What you have is rare so what little is available is very expensive and no we can't afford to pay for it, it wouldn't be fair to those ordinary folk would it? What you have is rare so we have no evidence that paying for anything is going to work anyway and we can't waste tax payers money can we? What you have is rare and there are only a few of you so it will not look bad on our statistics when we fail to save you, will it?
Let's superimpose you are black, Muslim, Jewish, female, blind, gay and/or old into any of those scenarios and see how comfortable our liberal sensibilities feel.
Time for a rethink maybe, time even for new legislation but probably too little time for us rarities, we are too expensive and most of us are not going to make it onto the Antiques Roadshow. We are the unexpected few and as old blue eyes so graphically put it: "too few to mention".
But wait there were those other "few" who won the war or something and who as a country we seem to revere; so watch out for us. Discrimination of any kind is wrong people! in modern parlance it sucks. Up with it we should and will not put and with a bit of help from our friends maybe the few will become the many and we will overcome some day.