They’re a talking point, colourful, and fun to see. I’m just not too sure they are really about me.
Rename them ‘lots of socks’ if you prefer, instead of calling them odd. The thing is, I’m neither odd nor plural. There is only one of me.
Ah but socks look like Chromosomes you’re keen to explain.
Yes they do, so true, yet you also have those. Minus one of course, but otherwise you’re just the same .
You, me.
Both should rhyme with humanity.
Oh please don’t feel got at…I’ve worn mine too! I’m always up for some fun, often much more than you!
Socks.
It’s just you gave me some last year, and the year before that.
And I’ve noticed a pattern forming. A habit; one that leaves me a bit flat.
These socks keep coming, year after year. That’s nice… but there are other things I’d very much prefer.
When I’m older, I might like a job; will you help me find suitable employment? Or invite me to your parties, welcome me, enhance my enjoyment?
Include me at your meetings, give me a seat at the table. See me as your equal and perfectly able to contribute to the conversation in whatever way I can. Whatever the subject may be, especially, no –always – if the subject is me.
Support research into my health so I can live well, like you. Stand up for my rights, remove all taboo.
Help me learn new skills, give me roles to fulfill. I’m very keen to be active and not forced to sit still.
Just imagine – with nothing to do, your days spent at home; you’d get bored very quickly and feel quite alone.
Don’t stay silent when others say my life has no worth. Their influence is strong; complicit in deciding the fate of others like me, well before birth.
Champion me, not only with socks, but with all you can muster. Stand up for me, defend me, be a myth buster.
Give those who will love me all the help they may need To nurture me, teach me, help me succeed.
Don’t abandon them or leave them – at times -feeling so alone. Give them all the support you are able; help set the tone.
So wear the socks if you like; the bright colours I love and am happy to see. So long as you then take them off and walk barefoot with me.
Gratefully yours,
Hazel x
The DSRF are the UK’s only Down’ Syndrome Research Charity. Their vision is a long, healthy, happy life for people with Down’s syndrome (DS) and their families. The Foundation is a charity born out of a parent’s love and a passion for the very best evidence-based interventions. You can donate to their work if you wish here.
What’s that phrase…. the one when a writer gets stuck for words? You know, when they can’t put pen to paper or find the words that, at other times, flow so readily….that. No, I can’t remember either.
Whatever the expression is I’ve got it. Had it. Still have it. I haven’t been able to put my thoughts down in print for a while now. Apart from one short article for the Down Syndrome Research Foundation, I’ve drawn a blank. Is that the word? No, no, but it’s something like that. Begins with a ‘b’, I think.
I last properlyblogged in July. By a lake. In a spacious and peaceful place.
A pause
A pause in a year that has drained me of words. And of so much more.
Oh, this isn’t a lament about how hard life has been in a pandemic. Truth is, I don’t have the words for that particular story. And, even if I did, I know there are so many others who could tell their own difficult story; families like mine, who’ve had their vital support networks pulled, whose tired faces and weary, worn out expressions say it all; dreading the prospect of schools ever being closed again should the need arise. Teachers who (for me) have been the unsung heroes of 2020, continually being asked to go above & beyond what is expected of the rest of us and yet often criticised from all sides. I haven’t even mentioned all the other frontline key workers. People who haven’t spent months at home baking cakes, crafting, doing DIY or bingeing on box sets. And I’m not having a pop at anyone who did those things, but, you know, honestly? Jealousy is something I’ve battled with this year!
No. They don’t need to read my story and neither does anyone else. I’ll keep my thoughts about the last eight months to myself, at least for the time being.
For now, I remain lost for words. Unable to adequately communicate my deepest or even shallowest of thoughts.
Like Hazel.
Hazel is my daughter. Hazel has Down’s syndrome. Hazel is the clearest communicator I know but her language is an unspoken one.
So, likeHazel, I think I’ll laugh out loud at whatever I find amusing, whenever I find it.
Like Hazel, I think I’ll stare intently at shiny things, bright things, beautiful spinning shimmery things.
I’ll stare at pictures I like, photographs I’ve taken, faces I see. I’ll smile at those.Like Hazel. She smiles at people. Often. Even if they don’t smile back (but they usually do).
Like Hazel, I think I’ll run my hands over surfaces or textures that I like; the pebbles we collected in a brightly coloured bucket on a Devon beach, one July day. Seaside stones that now form a kind of miniature sculpture on my patio. A shadow of their former glory as the surroundings have changed; but I still like them. They make me smile. They cause me to remember a very happy day spent by the sea after many not quite so happy days in lockdown.
Hazel smiles often. I think she remembers often too. More than most people, perhaps. I’m convinced she regularly deposits joy for herself in her memory bank and withdraws it on a daily basis.
Like Hazel, I will explore my surroundings. I shall reach out and feel silver sage leaves between my fingers or inhale the scent of fresh mint picked from my little herb garden. I say garden, it’s no more than a pot really, but as it exists in my garden that alone brings me joy.
Still, no words needed.
Hazel is nearby. She has a stick in her hand and fallen leaf litter at her feet. She will always choose the opposite textures to me. Sand over stones. Sticks over sage. And leaves. Leaves are her favourite. Especially if they are falling around her. I know she loves them. Once upon a time she would say so.
“Leeeeeaaves“
As I hold them above her head and let them fall.
Her face lights up, arms stiffen and hands wave.
“Leeeeeaaaves“
Now, there are no words. She has lost them. Autism, or something, has stolen them. A gradual lockdown, of sorts, in a part of her brain. Not of her making or choosing. It came without warning. No one can tell me if or when the restrictions will be lifted. It’s hard to find the words to describe how I feel about this too. There are some losses, some experiences, that cannot be put into words because words are not always what a grieving soul needs to hear.
Hazel accepts what is with a peacefulness that passes all understanding. She is truly a mystery. Marvellously so.
She still loves leaves and the leaves still fall as they’ve always done. Hazel is thrilled by that, just as she’s always been.
If Hazel feels any sense of loss, she does not show it.
Somehow, the words are not needed. At least not for now and not in these moments. For now, I will take a leaf out of her book. Literally. I’ll hold it the way she holds it. I’ll feel it, turning it over and over in my hand. I’ll marvel at it. I’ll shout with glee as the leaves fall around me.
Messy and colourful; swirling noisily around me.
Like Hazel does. Like Hazel is.
She was born in the Autumn. It was messy back then too. Hard. The Great British Bake Off was on the television screen in the NICU restroom, in only its second season. Strange, the things you remember. And I remember there were lots of leaves. A carpet of them right outside the hospital entrance. Such a beautiful swirling mess.
I’ve been spending a few days in a relaxing and isolated place, booked pre-pandemic, overlooking some fishing lakes. As I write I can see three, sometimes four, herons gliding gracefully over head. Such extraordinary looking creatures in flight. And, once on the bank they adopt sentry status, scanning the lake for fish whilst giving a masterclass in superiority. Until they call out that is. A sound akin to finger nails on a blackboard. Beautifully harsh. Something about it grates and leaves the listener uncomfortable. It jars. Profound beauty and harshness held in tension. The herons take flight and with them my breath.
My daughter’s life, her whole existence, is profoundly beautiful yet also harsh. We live, she lives, with the tension of these truths. And, as a consequence, she takes my breath away daily.
Many, even sometimes those in our own community, see the disabled life as something to be avoided. I know I did when Hazel was born. I’ve written about it before..how I hoped she would have some kind of Down syndrome light version of the condition. Not too bad, manageable, successful even. There are no limits on people with Down syndrome is how the new mantra goes. They can learn to read and write, go to school, get a job, play sports, live independently, be models, actors, politicians, get married and so on.. All true and all good, I don’t deny it for a moment. They often do.
So don’t worry, we tell new and expectant parents; It’s only an extra chromosome. Keep calm.
I disagree.
It is not only an extra chromosome.
It is a profoundly beautiful life.
Not because of any achievement or indeed any similarity to a life without an extra chromosome. It’s beauty is in its existence. It should not need to be championed or given a reason to be accepted. It is already beautiful, profoundly so.
My attempts, early on in Hazel’s life, to disguise her ‘disabledness’ (which probably isn’t even a word) thankfully and spectacularly failed. Hazel comes with an array of visual reminders of it; a feeding tube for starters, then there’s the equipment, hoists, stairlift, adaptive chair, a hospital style bed, not forgetting bifocals for very poor sight and also soon to have hearing aids. Hazel is non verbal and makes all kinds of noises that loudly announce her presence to the world wherever we are. There is no disguising Hazel! Oh, and she laughs. A lot.
Hazel has also been learning to walk. At almost 9 years old she can now walk around the house or familiar places with gusto. Stomping and lurching as she explores familiar spaces now revealing previously hidden vistas and treasures. Her achievements are tremendous and we celebrate them daily.
And yet. Remove her plastic clunky orthotic devices and her world shrinks once more, her weakened frail ankles collapse and she falls to her knees in a single step. Those unattractive plastic devices are, to me, of profound beauty and huge importance. They are enabling her to discover new and exciting things for herself, though her wheelchair is never far away.
Wheelchairs. Feared and avoided by many parents of children with Down’s syndrome, particularly in the early years. I know this..I was one of them. So much so I opted for a buggy that looked somehow more er, um… acceptable. I thought that having a wheelchair made her look more disabled. Well. Yes I suppose it does. But that is only a negative if you also hold the view that being disabled is something to be shunned. It depends on your assumptions about disability. My assumptions were so very wrong. I mean, it’s fine if you don’t need one, but it’s also fine if you do.
Is Hazel worse off because she uses a wheelchair? Is she worse off because she wears orthotics? Or is she discovering joy every single day in new places because she has them? Is she to be pitied because she is shortly to be wearing hearing aids or will people share her joy as the sounds we take for granted enter her world for the first time? And if they don’t work, if she doesn’t take to them for whatever reason, will that be seen as failure or will she be allowed to live her life in the way she feels most comfortable?
To me, her disabilities just make me more determined to travel further into her world and see it though her eyes and ears. I desire to make her pathways less fraught with obstacles and trip hazards. Where those obstacles cannot be removed I want to help her find another way over the terrain. This is what Hazel needs from our community, from those who care for her, from medical professionals, teachers, and especially Governments. Policies, medical research, social and educational opportunities that will enable her to really live her best life; whatever support systems she needs or we may need as parents to help her. What she does not need are assumptions that her life is not worth living. That she is failing or in need of pity because she looks more disabled than another. That her life is less. Neither do we need assumptions that, as her parents, we can do it all, that we don’t need a helping hand from time to time. Caring is a very precious and undervalued thing indeed. Assumptions can be devastating, checking them and challenging them can bring change to entire communities.
A friend of mine often says to diminish one of us is to diminish us all.
Just this week I was reminded of the heart-rending story of a disabled community in Japan- the Sagimahara Institute – where, on 26 July 2016, a man attacked and killed nineteen residents and injured twenty six; thirteen of them severely. His intention was to ‘obliterate’ hundreds of people who he deemed unworthy of life. A drain on their carers. He believed he was doing society a service. The tragedy became Japan’s worst mass killing since the Second World War.
An extraordinary video called Sachiko’s Story Nineteen Paper Cranes tells the story so movingly and asks the question, “Why does the world assume that a disabled life is not profoundly beautiful?”
I will not spoil the story – do watch,you’ll be glad you did – but what followed in response to the killings was truly beautiful.
Landscapes can be harsh environments to live in and journey through but at the same time profoundly beautiful. We need to adapt to their contours, their peaks and their valleys. Not circumvent them or leave them off the map. Or, worse still, destroy them altogether.
This is my daughter’s disabled life and it will always be profoundly beautiful.
Hazel, my daughter, loves farm animals. Cows, sheep, ducks, horses, donkeys; Old Macdonald’s entire collection amuses her. Farmyard Tales of Chloe the Cow is a favourite picture book of hers. Giggles every time we read it.
There was a time when she wouldn’t look at animals. An entire trip to a farm park or zoo and she would turn her head at every exhibit, steadfastly and determinedly look the other way.
Try as we might she wouldn’t look at the animals we’d brought her to see. Not sure why. Perhaps they scared her. Maybe they were too enormous for her to deal with. Whatever it was she blanked them.
They were not acceptable to her.
Now she is a little older she no longer shies away from those same animals. Instead she watches them, she laughs at them, though she has been known to aim a rather firm boot in their direction if they get too close.
Hazel likes a cow. Especially when it moos; it makes her giggle. She has a cuddly one at home called Daisy. Daisy the Cow.
Strange creatures if you ask me, cows. Constantly grazing. Tearing up grass and then moving on to new and better pastures. Never really satisfied, always eating.
There are over a 1000 species of cow in the world apparently. Plenty of giggles to be had then Hazel!
But there is one species of cow that I hope she never finds out about.
It’s big. It’s scary. It’s overwhelming. Most people don’t want to look at it. They’d rather pretend it wasn’t there. Look away. The proprietors of the farm parks it is usually found in are acutely aware of this fact and so have thought long and hard about to make this cow less scary, attractive even.
Its image problem is so great and potentially very damaging to its owners that they have disguised the cow. So good is the disguise that most visitors have no idea that there is a cow there at all. They do not see it. The owners have dressed it up and given it fine clothes to wear. Now it is respectable and acceptable; praiseworthy even and by rights it must be honoured. Its existence must never be questioned or its true identity revealed.
Here in the U.K this cow goes by the name of Choice, not Chloe or Daisy.
This cow is no friend to Hazel, or anyone else with an extra chromosome. This cow is not cuddly. It will not make her laugh. This cow is bred and sold by a Global Genomics Organisation. This cow is making them vast sums of money in detecting more and more babies with Down’s syndrome, in utero, all over the world.
This breed of cow is a Cash cow.
This cow is hungry but does not eat grass. It’s appetite is for children. And if you don’t believe me then watch this video to hear it from the breeders mouth. They are very pleased with their cow. It’s prizewinning. Best in show.
I’ve seen this cow; I wonder if you have too?
And now that I’ve seen it I refuse to look away and cannot remain neutral, for this is a cow that will affect my daughter and anyone else with an extra chromosome for years to come. It doesn’t just affect the unborn, though they are the ones the cow desires the most. This cow affects people I love. People I value. People who have as much right to breathe the same air as the rest of us. People.
I cannot look another person with Down’s syndrome in the eye and celebrate their lives whilst ignoring this cow or trying to remain neutral. You see this cow thinks children, and by association, people with Down’s syndrome should be screened out, devoured before they are even born. This cow deems them worthless and disposable, yet at the same time sees pound signs over their heads and goes all out in search of them.
Priceless rubbish.
This cow tried to devour my child but failed. It wants the likes of her screened out prenatally. This cow will do all it can to devalue her life and the lives of others with Down’s syndrome. It is in no danger of starving; the grass is very green and business is booming. This cow is not remotely interested in offering women choice in their pregnancy, only in limiting it. I hope my daughter never finds out about this cow. Sadly, many people with Down’s syndrome will have found out about this cow and may wonder what they have done wrong to deserve such treatment. How unimaginably distressing to find out you are so despised.
Neutrality is not an option for me. I know I am not able to stop this cow; I am no match for it, that’s for certain. But I will face it and call it by its name as long as it feeds anywhere near me and the people I love.
This cow isn’t called Daisy and it certainly isn’t called Choice.
Its real name is Discrimination, its breed is Deceptive and its origins are in Eugenics.
Reward for anyone who has information on her whereabouts.
I wanted to give my first child the name Hope – or at least her middle name. I didn’t in the end. Husband said at the time that the name reminded him of a hospital; a kind of Mercy Mission of Hope reminiscent of his former Catholic upbringing. So we opted for something else.
(Apologies to anyone reading who is called Hope by the way – I still think it’s a lovely name.)
Hope is the reason I write this blog. I may not possess many academic qualifications in life but I do possess hope. And I think I am qualified to speak about it.
Hope is what I have been given over and over throughout my life, in so many situations. Even when there seemingly was no hope. I was given it. I didn’t create it. I didn’t fabricate it. I didn’t conjure it up. It was given to me and I took it. But I did look for it. More than I looked for anything else.
I was given it when I thought I’d never be able to have children.
I was given it when I was hours from death in Intensive Care as all my major organs were shutting down. Intensive Care is a place that, understandably, generates fear for many right now. For me, it generates hope more so.
I was given it when my daughter Hazel was born with Down’s syndrome. My GP gave it to me. He told me what I needed to hear over and above the voices of doom that had told me what a terrible thing it is to have a baby with Down’s syndrome. He gave me hope that life, although never the same, would still be worth living…and not just at some point in the future when everything was back to normal. It would never be back to normal. But it could be, would be worth living.
Hope was given to me when Hazel was so very seriously ill and we did not know if she would survive.
And here’s the thing. The hope I had was not reassurance that she would be ok, that I would be ok, or that we would be ok. We weren’t ok. Neither was she. She was very, very ill. Dangerously so, and I had been too.
The hope I was given, was that through it all, somehow, fear would not have the final word. Fear of what was happening would not define how we lived, how we responded to each other or to the situation we found ourselves in. Hope meant that the fear we were so readily inclined to feel would not have the final say in our thoughts and uncertainties we carried about the future. We knew things could get worse, we did not live in some kind of false hope that all would be well. It might not be. But life would have hope. Hope is about the here and now as much as it is about the future. If anything it matters more, here and now, than in 2, 3 or 10 or 20 years down the line. Fear is to be expected but hope is vital. Now.
And Hope is missing.
Right now, in the middle of a pandemic, hope is being looked for but it is largely being concealed by fear. Fear seems to choke the life out of hope. Fear grips like nothing else can. Fear is spread whether through word of mouth, news images, misinformation, or simply because there is danger and we are afraid. Fear is the natural response. There is real danger. People are dying and families are hurting; I do not seek to minimise anyone’s pain or suffering for a moment.
But fear does not have to be the only response.
The hope I have is that my life and the lives of those I know and love, however long or short, will not be dominated by fear. It’s the life I see my daughter who has Down’s syndrome living too. She lives a life of daily acceptance. It is a life that is permeated by hope, not fear. Yet she has had more than her fair share of difficult experiences. Still she does not fear the way most people do.
Hope has been given to me out of love. When I was so ill it was from people who lovingly did their job and saved my life. People who cared and people who knew that my fears, however well founded, were not the only thing at play. My faith too plays a part. A God given hope that can confront fear even when facing the threat of death itself – which I have – of my own and that of my children both inside the womb and out.
And perfect love drives out fear – a simple, yet profound bible verse I choose to take hold of and speak out over my own life, my own fears.
It is vital that people are given hope. Not false hope, but real hope.
Hope doesn’t necessarily mean a way out of something, such as a vaccine,(important though that is) or even a way through something. Hope is not about believing in Unicorns. Hope means being able to live in the moment without being paralysed by fear of what may or may not happen. Hope means being able to carry on when all around you are telling you to do or live otherwise. I’m not talking of being reckless here or promoting selfish behaviours. I’m just saying that there is another story to be told, another truth to take hold of. Fears may come to pass, they may not.
Hope speaks of living free from those fears.
Parents who find out the baby they are expecting may have Down’s syndrome are rarely offered hope. They are offered lots of other things – many of them good and well intentioned. Information they receive is improving. It should no longer be outdated (though often is), due to the efforts of many in our own Down’s syndrome community. Yet even we’ve convinced ourselves that is all they need. The right information in order to make the right decision for them. Yet how many women go to their prenatal scans simply looking for information? Most are also looking for hope too. If, as most parents of children with Down’s syndrome will tell you, life is still worth living and full of hope, then why is that not the first thing women are told when they find out their baby might have Down’s syndrome? Is it because fear has a stranglehold on hope? Fear has the final word. Hope is not even allowed to enter the waiting room, let alone the discussion in the scan room.
In times of crisis, personal or global, hope is needed more than ever. Rainbows have appeared in windows and balconies around the world. People are looking for hope in a world gripped by fear. Rainbows are real even if unicorns aren’t.
Perfect love drives out fear. People with Down’s syndrome are, in my experience, people who love unconditionally – often more than most. And, as a consequence, fear is driven out. It has no place in their lives in the same way that it so often has in others.
My daughter Hazel has Down’s syndrome. She brings hope as well as joy to this world. And hope is needed more than ever.
People with Down’s syndrome are needed more than ever.
I know why the caged bird sings is a book that profoundly moved me when I first read it years ago. The author, Maya Angelou, vividly recounts her childhood against a backdrop of racism, discrimination and poverty. A book filled with moments of joyous discovery weaved into and through a history lesson on brutality.
I’ve been re-reading it again recently. I say recently, but it’s taken me over a year and I still haven’t finished. Not for want of trying – I’ve quite an impressive stack of literature next to my bed; but for the fact that the moment my head hits the pillow I’m gone.
As a parent and carer to two children with a range of both complex medical needs and disabilities between them; Autism, Down’s syndrome, Dyspraxia (let’s just say the list of conditions at the top of our hospital letters takes up most of the page) – reading for leisure, in fact most kinds of leisure tend to take a back seat. Sleep is more of a priority as it can often be in short supply. Tube feeding my child every night tends to cut across most socially acceptable leisure pursuits at the best of times.
(She’s worth it of course, of that I have no doubts. They both are).
Therefore, a trip to the hairdressers every eight or nine weeks or so is something I guard jealously. A self-indulgent hour and a half that serves also as an opportunity to read.
Maya Angelou comes with me. She sits beside me in the salon. She laughs in the mirror and tells me her tales. That laugh. From her belly. Gets me every time.
My hairdresser is too polite to mention that I am still reading the same book as last time, and the time before and the time before that.
Last week, chapter twenty five was waiting for me. Three quarters of the way through. I looked forward to Friday and my appointment.
Chapter twenty five is still waiting for me. Like everyone else in the nation, no, the world pretty much….a haircut now has to wait. Appointment cancelled. Salon closed. It’s on hold.
Everything is on hold. In some way and to some degree.
And, for families like mine, it’s vital support systems that have been put on hold. Systems we have fought for, prayed for, cried for, pleaded for. Systems we have celebrated gaining access to: education, healthcare, social activities for the disabled, respite for carers and much more. Support systems gifted to us by the kindness and dedication of numerous volunteers. Families, like mine, suddenly find themselves without these vital networks. More than that, they watch in disbelief as people panic buy medical supplies such as gloves and clinical wipes – items we rely on for daily life, regardless of a pandemic, are now in short supply. Respite centres close, lifelines are cut off. And though the world moves online; excellent programmes and meetings are created and made available to those who now have lots of time on their hands, these are much lessaccessible to families like mine. These families wonder how on earth they will cope. I wonder that too.
Then I remember Maya.
I remember thankfulness. I remember beauty in hard places. I remember to live one day at a time. I remember to not worry about tomorrow for tomorrow will have enough worries of its own.
I look at my daughter who has Down’s syndrome. She is non-verbal, yet she tells me all I need to hear, loud and clear.
She tells me that there is joy to be found in the waiting, in the confusion and in the uncertainty. In the now.
She loves her life. Her school, the farm she visits, the lambs she strokes, her home, the park, the shops, her beads and ribbons, Granny & Grandad’s house….
She has no idea why she cannot go much beyond her back garden at the moment. She is confused. Sometimes she is upset. Yet she searches out joy and brings it to me in some small, gigantic way every day. Today it was in a belly laugh. A bit like Maya’s. From deep within yet at what? I have no idea.
Hardship is, well, hard, yet it does not have to be devoid of joy.
Our lives are not really on hold, even on the hardest of days when there is no respite to be found. Even then, I have found there are always reasons to be thankful, always opportunities for joy. My daughter with Down’s syndrome eloquently tells me so.
And I remember Maya. And I think I might know, a least a little bit, why the caged bird sings.
When my daughter was born with Down’s syndrome, I am ashamed to admit that, at first, I wanted to hide her away. I tried to dress her in a way that people wouldn’t notice certain features pertaining to her condition; her slightly thickened neck for instance. A well placed chunky knit cardigan dealt with that! As we struggled to come to terms with her diagnosis, though we loved her with every fibre of our beings, my husband and I spoke privately of a hope that she would have some sort of ‘Down’s syndrome light’ variety. A not too noticeable version of the condition that would be acceptable to others and also, it has to be said, to us. As for thinking about other people, especially older people with the condition, this was not something we wanted to contemplate. In our eyes, they were to be avoided. Feared even. In fact, looking at anyone else with the condition was hard to do back then, though I did try to notice the ones I deemed acceptable – just about. All in the hope that my child would be like them. Not too bad.
Our eyes were focused, not on our child, but on our prejudice.
Eight years later and laser surgery has removed that prejudice and cleared our vision. Thankfully. Or was it heart surgery? Either way it is gone.
This week, a film made about a man with Down’s syndrome, Jamie and his brother and family, appeared on social media. Radio 4 even did a feature on it. You can watch it here if you like. There was quite a reaction to it in our community. Some, like me, loved it, others including people whose lives I hugely respect, didn’t. Among other important things, they worried about how Down’s syndrome was portrayed in the film, especially to new parents or parents to be who might see it. It was absolutely not their experience and it appeared outdated, a backward step even. Some found it sad.
As the dust has settled I can see why they felt like that. I just don’t agree.
A wise person said to me that the film was like a mirror. Reflecting back so much of our own fears and, I think, our hopes too. Well I’ve been reflecting in that mirror since I saw the film and my wise friend is correct.
I’ve spent the last seven or eight years telling people, sometimes through my blog but in other ways too, that there’s nothing to be afraid of in having a child with Down’s syndrome. I’ve told them about all the things children and adults with Down’s syndrome can do now, achieve, be, aspire to; compared to in the past. And this remains all true and valid. I love how our community celebrates this change in all kinds of ways as more and more is understood about the capabilities and learning potential of people with Down’s syndrome. I hope we never stop making this known where it needs to be known. But it is not the whole picture.
So here’s my next confession…
Through my writing, I’ve told people these things, which I wholeheartedly believe and support, against the backdrop of knowing that my daughter is not like most children with Down’s syndrome. At least not most of the ones I know. She is more like Jamie. She sits how Jamie sits. She sounds how Jamie sounds. She has fewer words than Jamie has, yet she was not born forty years ago in some dark, uneducated era where early intervention for people with Down’s syndrome was largely unheard of.
No. She was born just over eight years ago in 2011. She’s had far more support and intervention in her young life than Jamie would have had in his – at least outside of his loving family – oh I loved them in the film too! Their faults, their failings but mostly their love for Jamie and each other shone through.
Could we be doing more to help her development? Always. Is she still failed by healthcare systems and Government policies towards disabled people? Yes, frequently so. But that’s not the point here.
What’s true is that she is more like Jamie than most other children I have so far met who have Down’s syndrome. That is not to diminish them or their families in any way; I hope I no-one feels that’s the case for it’s not my intention. It is simply that our experience is one that is far closer to that of Jamie’s family. His face, his life, his behaviours and reactions we recognise in our own daughter. His family in ours. Even in the words they used to speak to or about him. And our lives are not some tragedy to be hidden from view.
Unconventional? Certainly. Challenging? Definitely. More so than I have ever admitted in my writing and that, with hindsight, has perhaps not always been helpful. Even as I write, we should be elsewhere, joining in with an event that most people have no problem attending, even most of those with a child with Down’s syndrome. We are not most people.
Neither are we always looking for lots of inclusive activities to take her to. Though it’s sad there are not more. Because more often than not, even the inclusive ones are unsuitable for her. That will only change when her ‘face’ becomes an acceptable ‘face’, a face that is accepted as it is now, with all its funny ways and behaviours, noises and responses. It will change when her way of communication, as it is now, not as it might or could be, is accepted and welcomed, if not always understood, by everyone, not just a few people. Some call it her level of communication but that, to me implies critique. What I want most is for her always to be accepted, welcomed and wanted as sheis. Not because of any intervention or achievement that might somehow make her a more positive advert for her community, however helpful it may be to her or anyone else. I think most parents want that too.
Hazel brings something different to our family. I saw it in Jamie’s family too. She brings people together, to surround her and each other. She brings a kind of healing, she brings mystery. She brings dependency.
Ah, but we need our children to grow up to be independent don’t we? That is, after all, one of the aims of most parents – to help their child grow up to be fully independent and make their own way in the world.
And yet Hazel has taught me to prefer the idea of a society where we grow more dependent on each other, not less.
The reality is far from that though and I think it’s one of the reasons people reacted with concern to the film. I get that.
I don’t think it’s wrong to hope and strive for a society where dependence on each other is highly valued. If our society was like that, then many of the fears that keep parents of children/adults with Down’s syndrome or other disabilities awake at night would not exist. We could be confident that our loved ones are going to be valued, cared and wanted for who they are, regardless of their level of dependency and regardless of whether we are here to care for them or not.
A mirror should always reflect the truth and perhaps I am guilty of distorting the image of our lives in order to gain the acceptance of parents who might be considering terminating the life of their unborn baby, following a diagnosis of Down’s syndrome. Yet the truth still is that all people with Down’s syndrome, whether they are like Hazel, Jamie or whoever, have beautiful faces and can live beautiful lives, whatever their challenges. Their stories, our stories, all deserve to be told and it is a privilege to be part of a community that is dependent on each other.
Let’s not hide any one of us away.
Adam Pearson A British Actor and Campaigner and who is also diagnosed with a genetic condition said recently “The way to eliminate any kind of misconception or prejudice is to increase the exposure”
Show me your face and I will show you mine.
“Fear makes strangers of people who would be friends.” Shirley Maclaine
By rights my child should be talking by now. She’s 8 years old you see.
By rights she should be running around; climbing, jumping, falling and scraping her knee.
By rights these are skills that are just delayed.
She’ll get there in her own time, don’t fret.
Her extra chromosome is championed by those of us in the know. Though I think even we get it wrong by the examples we hold up for inspiration:
Actors, dancers, TV stars, athletes, some are even politicians. Look how much these people with their extra chromosome are contributing!
As if they need a reason to be here.
Nothing to fear they tell me; she’ll make her own way in this world like them.
By rights.
By rights my child shouldn’t even be here. Such is the overwhelming view of the world to people like her.
By rights I could have deleted her life. I should have done so, according to some and by rights for which others have fought.
My choice? My right not to do that?
Of course! But you’re on your own.
Stop. Let’s go back to the beginning, where it all seems to go so wrong.
So very wrong and not at all about rights.
My child’s very existence is a cry to be loved.
She is not to be measured on a scale.
Scales of achievement that judge her, proclaiming her worth in how much she can bring to the table.
By rights she may never measure up to societal scrutiny, or even that of her own community. Who knows when or if she will talk or run?
Truthfully, she is not here by rights – for society says she has none.
She is here by love.
It is love she is attracted to. Not achieving or being the best. She has no desire to acquire more knowledge or power or fame, or the rest.
She has a desire, a need to be loved. Let’s face it, don’t we all?
She is not here by rights, she is here as a gift.
A priceless gift of discovering that to love is not always easy, but is of greater value than anything else.
Tell me…. what gift was ever a right?
“Every child, every person needs to know that they are a source of joy; every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed.”
―Jean Vanier, Becoming Human
Sunday evenings, at least here in the U.K., may be sometimes spent watching the most extraordinary wildlife documentaries on television. Against backdrops of breathtaking scenery, coupled with state of the art photography and filming, you can be taken on amazing journeys, encountering incredible creatures and habitats. Microscopic technology takes the viewer from the comfort of their armchair on a voyage of infinite discovery. Ordinary grains of sand, for instance, taken from the beach and magnified to reveal a dazzling Aladdin’s cave effect. Stunning jewel like precision and design. Each one different, unique, whether you believe them to be created or evolved. Redefining the meaning of a close up. Jaw dropping photography.
The hardest of hearts can be moved to tears at the sight of once magnificent sea creatures now suffering a terrible injustice. Suffering because of the shameful amount of plastic we humans have disposed of in their environment. Whole movements that seek to reverse this horror have been born out of witnessing such atrocities. We care, they say. Though we didn’t used to, we do now.
Such is the power of technology; it advances our understanding of the world around us and helps us set to rights the wrongs we have committed. Technological advances being used for the good of the environment and, ultimately, all its inhabitants.
Yet it troubles me greatly that this same technology that allows us to travel further than we’ve ever travelled before and see in micro detail that which was previously unknown is so very, very limited. A technology that sees everything yet at the same time sees nothing.
Screening tests that are more advanced than ever before can now detect the possibility of Down’s syndrome in the unborn earlier than ever. (And, worryingly, it’s not always pointed out that the results can be wrong). Technology is so advanced that it won’t be long before all kinds of other genetic conditions are identified in utero. Many believe this to be a good thing. Technological advances supposedly being used for the good of society. Yet the ‘good’ these particular screening tests do is questionable, more often than not at the expense of another and largely unchallenged from an ethical standpoint.
As I write this blog, my daughter, who has Down’s syndrome is clutching a leaf.
It has held her attention for some time now. She marvels at it. Holds it between her fingers and spins it. She does not speak words, yet her voice echoes the joy she experiences from examining the leaf in her tiny grasp.
I hear her.
I hear too her newly acquired footsteps around the house. A sound that still makes my heart sing. Each footstep fought for over the last eight years. Footsteps that we wondered if we’d ever hear. Though it wouldn’t have mattered if we didn’t …not greatly anyway. We do not measure her life by whether she can walk or talk. We do not measure her life at all really. How could we? It’s impossible to measure the joy she brings us each day, even if we tried. She has redefined the meaning of close up as she enables us to see so much more of life than we ever realised was there.
Just like it’s impossible to detect much more than one extra chromosome at a screening test. A truly advanced technological breakthrough that apparently tells you so much yet actually takes you further away from the reality of what or who is really there, beneath the surface. Waiting to be discovered, waiting to be loved, waiting to be nurtured, waiting to be cared for. And yes, I still count it an absolute privilege to care for, marvel at and learn from another human being, however many challenges there may be, extra chromosome or not. Indeed, parents, advocates and of course people with Down’s syndrome themselves are increasingly fed up of being told to bow at the altar of personal choice when it comes to prenatal screening. As if a person with Down’s syndrome were just another option at the Fresher’s Fayre of parenting options. Discrimination has never been so cleverly disguised.
I wish that in every heart that is rightly moved by the plight of the cormorant trapped in plastic or the dolphins tangled in discarded nets, there would be found the same outrage towards the plight of people with Down’s syndrome. An Extinction rebellion – though of course Down’s syndrome itself can never be made extinct even though worldwide efforts to prevent live births are abhorrently successful.
A people group so targeted by technology before they are even born. Deemed unworthy of protection yet feared enough for detection.
A lens that can detect them yet does nothing to protect them.
A lens that sees everything and nothing.
It appears to me that the lens is facing the wrong way.
For more information about what it’s really like to bring up a child with Down’s syndrome go to Positive About Down’s Syndrome
Downright Joy 