Tonight I thought I would write to you about the amazing Home Ed day Natty and I had today. You know, the inspiring, heartwarming post with lots of photos of Natty counting carrots and cooking soup and sorting fruit from veg. The one where I tell you she learnt to swim without arm bands for the very first time and I sobbed and signed 'proud' in the pool...
It would have been a nice post and I might just treat you to that one tomorrow.
But sometimes, other events take over, and sweep you up and draw you in and demand all your emotions. You pop on Twitter and an hour later you are sitting crying into your keyboard and despairing of the world, feeling futile and insignificant, powerless to change the tide of ignorance, prejudice and hatred that our children face.
Tonight is one of those nights.
|My colourful chromosome cake made for World Down's Syndrome Day.|
Turns out it'll take more than a cake to change the world!
Truth be known this feeling of despair, or rather uselessness and insignificance, has been coming on for a while.
I've tried to ignore the new 'harmless' early blood test that screens for Down's Syndrome, (harmless, unless you happen to have Down's Syndrome and be the baby that has been positively screened I guess.) It's all over the papers at the moment. I can't hear myself think for Down's testing stories and many wonderful bloggers have eloquently written their replies. Some Daily Mailer said it would enable us to 'eradicate' Down's Syndrome completely. Sadly, I think our blogging replies are like spitting in the wind on this one.
I've said it before and I'll say it again, I am pro-choice, who am to judge others and their choices from my comfortable life with my supportive husband by my side. I tried to tell myself that parents just want to be informed, so they are prepared with this test. But more and more I have looked at the 92% termination rate of babies with Down's Syndrome and realised that this doesn't represent the natural percentage of parents that would choose to terminate if given unbiased advice and proper support. Surely that would be nearer 50% (hazarding a rough guess).
Something more sinister is afoot. It's called Eugenics (one of Hitler's little penchants). We have to face the fact that many medics are urging parents to terminate their baby, clouding the decision with fear and tales of worst case scenarios. Perhaps the doctors are ignorant themselves, or maybe they have targets and budgets to adhere to, who knows. But how often are these worried parents offered a chance to meet a familiy with a child with Down's syndrome, to see the reality of Down's Syndrome today?
You see, Down's Syndrome isn't like Spina Bifida or other conditions that we can prevent or hope to cure. It is simply the addition of an extra chromosome, number 21. It happens at conception and that, my friend, is that. It will always happen, throughout cast, creed and social strata, whatever the age of the mother or father. It is not genetic. I repeat, there is no cure or prevention. Only termination on detection, or a chance to live a full and complete life. Black. And white.
I have heard from Mums who, having made the decision to continue with the pregnancy after a diagnosis of Down's Syndrome, are being constantly asked if they are sure at every scan appointment. Others who continue are faced with family who think that the baby, once it is known it has an 'extra something', becomes suddenly disposible, and put pressure on them to terminate. Others talk of the limbo they are left in after the amnio test and before the results, many wish they had never had the tesing in the first place.
The Archers are bravely covering the story of a couple who's baby has been diagnosed with Down's Syndrome on their Radio 4 show. Even they are honing in on the discussion about abortion, and even asked their listeners to vote in a poll online about what the couple should do. This seems insensitive to many, my brother for one was appalled, but I guess it is getting the realities out on the open, offering them up for discussion rather than brushing them under the carpet.
I look at our beautiful daughter; an amazing sister, friend, comedian, teacher, reader, writer, artist, model, swimmer, ballerina, connoisseur of chocolate cake, waiting room entertainer and ambassador for those with additional needs, and I wonder what other people think they are afraid of when they envisage the abstract concept of the unborn, unknown child with Down's Syndrome. I guess it's an amalgum of all the most worrying, frightening bits they have ever witnessed on every individual they have ever met, all rolled into one. A non-existent caricature of Down's Syndrome if you will.
Well you all know how hard I work to dispel those particular myths and to support families who want to know more. The blog, the modelling, the articles, the exposure, the radio interviews, the TV, perhaps a documentary. Right now I'm clocking up about 10 hours a day at my pc and I feel we are having some positive effect, I know we are helping many at least. But, as it turns out, it's nowhere near enough, a mere drop in the ocean.
So, that's the background, the nagging fear that the world is trying to rid itself of something that it doesn't know or understand, the very thing that it actually needs a little more of; people that are honest and true and live in the moment and genuinely care for others.
Than come the stories of what life is like for many children with disabilities around the world.
3 recent stories that make me realise that my work at Downs Side Up is not merely a drop in the ocean, but the little drop is trying to hold back the mother of all tsunamis. A tsunami of fear, hatred and prejudice. My heart sinks and I feel utterly useless. My drop and the ripples it has made, will they be obliterted by the wall of water?
Firstly we hear of little Rimsha, young Christian girl with Down's Synrome in Pakistan, framed for burning the Koran, arrested and held without support or guidance. Finally after much campaigning by worldwide disability groups and people of all faiths, she was released on bail, to be faced by angry mobs. She and her family are now scared for their lives and in hiding. We did our bit, we feel sick at the thought of her treatment, we internalise the pain and soldier on.
Then I read of institutions in America, so large they call them 'warehouses'. Cold, cruel places where children with disabilities are taken and parents are discouraged from taking their children home again. I stare at the screen. What century are we in? I have to remind myself.
Then, in a seperate article I read of 'seclusion rooms' being routinely used in US schools. For seclusion room read solitary confinement cell. Children have come to their deaths in these places, left alone and afraid for hours with no access to a toilet. One little boy with Autism recently hung himself. Other children as young as 4 are left deeply traumatised by the inhumane experience. Parents are being told the children are in 'time out'. When they find out the truth they are removing their children and home educating in their droves. This cannot be right. This cannot be real.
I scratch beneath the surface and find an expert who testifies in legal cases where the same thing has happened in the UK. Oh yes, right on our doorsteps. No deaths yet, that's a matter of time, but children left to strip themselves naked and eat their own faeces in a stinking cell. They are manhandled into the cells in the first place and once it becomes a routine, the behaviour worsens. Seclusion rooms simply do not manage behaviour effectively. They are not lawful.
A new morning.
I didn't sleep well last night. My brain didn't switch off and I mulled over what on earth I could do to change, help, highlight. Great contacts have been made and I've read a lot of legal case notes and news articles. I'm feeling part of a powerful team suddenly. My head is above water buoyed along by their drive and enthuiasm too.
I switch on my pc. Then comes the 4th story, someone plopped it on my Twitter feed.
A man with Down's Syndrome in Margate given a DNR (Do Not Resucitate) on his medical notes without consultation with his family or carers. Reason given "Down's Syndrome, PEG fed, learning disability". Now I am quite literally shaking with anger. Read Mencap's article here.
Medical science has come so far, so many angels work within the NHS, an istitution for which I am eternally grateful when I see what happens in coutries without such a safety net. But yet the few who fail us make such deep imprints on society. They scar the collective consciousness of us all. And unless we all do something, shout louder and expose the wrongs, we are condoning and allowing it to carry on. We are saying it is OK to treat those with disabilities this way.
I was so hoping we would simply ride the crest of the paralympic wave. Clearly not.
I've just had a message from a dear friend. "If you ever feel too small to make a difference, remember what it is like to spend a night in a room with a mosquito."
There you have it. If you hear an annoying buzz, it'll be me :)