A Mosquito in the Room

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.

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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 :)

13 comments:

  1. What a wonderful post - keep being a mosquito and keep reminding us why we need to keep being those voices reminding people that these horrible things cannot be allowed to continue in this day and age

    Am horrified by the idea of seclusion rooms - how can that be humane?

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  2. I'm struggling to respond to this. I'm just sat here with tears pouring down my face. When I was 18 I started working with children with Down's Syndrome and instantly fell in love with all of them. They were bright, intelligent, funny, artistic, beautiful, creative, incredibly caring and sympathetic and I could easily go on. The thought of things like you have described happening in this day and age just make my heart break.

    You are doing an amazing job there as is Natty. You keep being a mosquito and just remember what a whole swarm of them can do!

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  3. Oh for goodness sake. You think the world has come so far and attitudes have changed only to find that ignorance is still everywhere.

    When I was pregnant with my son, my triple test came out with a 1 in 50 'risk' of Downs Syndrome, although the doctors thought it was more like 1 in 10 as something had thrown the results out (I didn't ask them to explain). They booked me straight in for a scan and amnio the next day and when I turned up and asked for just the scan to check for any visible problems and turned the amnio down (scared of miscarriage) they were shocked and tried to talk me round again and again, actually SAYING that if the amnio showed anything they could abort the baby and "get it all over and done with". i was horrified. Unless there were serious physical disabilities that were going to make it practically impossible for my child to survive, there was no way I was going to abort, especially not for Dows - why would I? When I told them this, they replied with "Oh. Well. At least 90% of parents choose to abort a Downs baby". I was so shocked.

    As it happened, my son was born without any issues or disabilities, but I was fully prepared for a child with Downs Syndrome because of my high test results. But to me that's not the point - yes, it was a relief in that that meant he was less likely to have heart problems and so on, but I never breathed a sigh of relief because he had the right number of chromosomes - he would have been my boy and loved just as much whatever the outcome.

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    1. This comment has saddened and shocked, but also motivated me. Thank you for sharing Lisa x

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  4. This post has just made me cry and cry and shake with anger. I want SO BADLY to enpower the parents of these children and to educate the ignorant. I'd left my blog alone. Caught up with work (with childen with additional needs) but I shall.blow the dust off and resusitate to join your voice. You are a strong inspiring woman and I for one think you can help turn the tide

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  5. Ive cried and cried reading this. And shook with anger. I so badly want to empower these parents and educate the ignorant. I had left my blog alone, caught up with work, but I am so outraged and motivated, I shall blow the dust off and join your voice. You are such a strong and motivational woman. I personally think you CAN help turn the tide.

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  6. We refused the risk testing with both babies because it wasn't something I'd terminate for. A physical handicap that left my child with daily pain would be an issue, perhaps. I think sometimes medicine has started to meddle too far in things.

    Sorry, not being particularly eloquent. Can't imagine how livid you are about the whole situation. Well done you for keeping 'buzzing' :)

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  7. My little girl is 8 months old now. All the medical information that is off loaded onto you is frightening, overwhelming and extremely off putting and it is ever likely that parents make the decision to discontinue the pregnancy. All the tests we had were negative hence no requirement for an amnio. Had she have been diagnosed before she was born, it would have made no difference. I would have had her anyway. Dealing with her diagnosis was easier when she was there to hold and as she grows and her personality develops i love her more and more each day. Our lives are far richer for having her in it. I would not change things for anything now. The world we live in will always have some one that delivers prejudice, all the more reason to challenge those people. My son has a book called Harry and the bucket full of dinosaurs in which it quotes "even if you are as tiny as a tick on the tail of a green turtle you can still make a big difference.". Keep buzzing, be even more detemined and keep on making all the difference.

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  8. Firstly I want to say what a wonderfully written post! I too am completely disheartened by the newspaper article regarding the testing and aborting of babies with downs syndrome. My little Sidney (who is 14 wks) was diagnosed with downs syndrome postnatally. My risk was calculated as a 1:760 chance so was never offered further testing. Not that it would have made any difference if we had known before, we just would have been slightly more prepared for the news rather than to be told after over 24hrs of no sleep and an emergency c-section at 6am!! I like I'm sure many families are scared for what the future brings for our children, both those with and without any disability. I just hope that they will never have to experience half of the stigma that we face now surrounding it and only through more education and understanding will we achieve this. Please keep up the good work even if at times you become discouraged. Even if it only makes a difference to one person then I feel we have achieved something xxxx

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  9. Andi, loved your post. However I think people who are "pro-choice" but probably wouldn't choose an abortion themselves, need to be aware that abortions for "foetal abnormality" along with those for rape, incest and genuinely life threatening situations (the hard cases) are considered "necessary" not because they genuinely are, but because they soften public opinion up for the acceptance of legal abortion as a "choice". See http://prolifebelfast.blogspot.co.uk/2012/09/arguments-of-abortion-advocates-part-1.html Does anyone wonder what choice the baby would have made? If we do not value children before birth, it is not too surprising that some people do not value children's lives after birth.

    I think the abortion rate for prenatal diagnosis is so high partly because many women realise where the screening pathway heads and either don't go there or step off prior to invasive tests, which then leaves mostly those women who are definitely for abortion or are ambivalent so perhaps are more likely to be persuaded to choose abortion out of ignorance or fear of the unknown. The worry is that once a non-invasive pre-natal blood test is all that is needed for a highly accurate diagnosis, it will become routine and many more women won't have considered what to do next if the result is not reassuring.

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  10. great blog Hayley, one of your best in the intensity of the sharing....it is good to voice the dispair at all that is out there everywhere and in all (or most) of us through ignorance...
    I'm feeling into the amazingly moving images of the athletes of the paralympics, just a few days ago on our tv screens, and, as i walk around the civilized European cities of Prague and Bratislava, am very aware how little access there is anywhere for people with mobility issues (including baby strollers) compared to the UK nowadays, and think about the participants who came from places where general awareness around what it means to have any form of disability or special need is even smaller then it is in these cities.
    It is easy to feel slightly superior and dream the dream that "we" have moved on from the days where "witch hunting" people with special needs was the norm and accepted.
    Unless you personally experience someone as in the moment, authentic and joyously full of life as Natty, unless you experience the gift of her honest expression of what is in the NOW, and the great teacher that she is in that for us, or can find out about her through Down side up, how would you know the other side , the reality behind the illusion of this convenient sense of superiority?
    Actually, the fear for the "other" for the "different" is alive and well and perhaps just dressed a little better in the cloak of politically correct code of practice in the UK, as your writing point out.
    It is the rawness of the emotion expressed so eloqently by people like yourself that is the wake up call out of our slumber state and into awareness.
    Hayley, keep being the musquito which refuses to let us sleep.
    Love and Blessings.xxx
    Katinka

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  11. Wonderful post ( as always!) I watched a talk about this on BBC the other day and had quite a debate with the bloke about it afterwards. There is a place in this world for everyone, no matter how many chromosones and we have decided that should we have another baby we will not test for downs syndrome. It would make no difference to whether I kept the baby and I really hate needles! Hope you and your beautiful girls are well,
    x

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