The following was written after an article that appeared in the Daily Mail this week that came with the designed to shock-and-divide headline 'I Wish I'd Aborted the Son I've Spent 47 Years Caring For'.Rather than lashing out at the mother speaking in the piece, I felt I needed rather to consider the times her son was born in, her state of mind, and instead question the journalism at work which contained no regard for the voice of the man at the centre of the article which was clearly advising abortion.
Families in the 60s had a much tougher battle than we do today, and many many mums and dads and siblings were, and still are, incredible pioneers. I think this woman's opinions, which were later aired on Loose Women, are thankfully rare.
The following is written to a woman like the one the article portrayed, one who became bitter through lack of support.
She is in no way like any of the parents of that generation that I am blessed to have met and follow in the footsteps of. Parents, and siblings I count as guides and support, such as Mardra Sikora, Sue Bessell and Elizabeth Corcoran.
|Kristian Naylor writes about his Uncle Martin|
Dear past generation Mum,
(who wished she had aborted her son with Down's syndrome),
I note with respect the hurdles you have faced.
I accept with sadness the lack of support you were given.
I understand the shame that must have once came with the stigma of difference, for attitudes when your child was born nearly 50 years ago were crude, and voiced so much more vociferously.
"Put him away and forget about him and try again for a healthy baby," was the standard line, the accepted way to 'resolve a (perceived) problem'. Or so I am told.
"He's a mongol, isn't he?" was the outdated and incorrect terminology used.
While families like mine receive support and early intervention to help our children reach their potential, find their independence, know their worth and how they contribute to society, you faced stares and whispers and were coldly told;
"He may never walk or talk.
He'll struggle to be continent. He'll die young."
Even, "He's ineducable."
And right there your expectations for your precious baby wilted too.
Your husband was old school, a reflection of the times. His 'stiff upper lip' was his way of holding you afloat, carrying on regardless, never mentioning the topics you so needed to discuss for fear of sinking you all.
You were the sole captain at the helm of this particular ship.
So, in place of acceptance, of learning together, of acknowledging the individual differences we all possess; a dark, resentful guilt took hold in your heart.
Guilt that came with many of the decisions you have made over the years. A vulnerable child seperated from his family, isolated from society, hidden from view, not given the chance of education Ignored or mistreated in institutions even. But you were not alone in your choices. And you were doing your best to swim upstream, against the flow of perceived wisdom.
In place of self-esteem and confidence, your child instinctively knew you and the 60s world saw him as a burden. He knew he did not fit in.
He reacted in the only way he knew how, in the only way any of us would react if we were in his shoes. Feeling your unspoken thoughts instinctively, he understood what it is like to never be loved unconditionally, to never have anyone feel proud of him, to never hear the words,
"Thank you, just for being you."
The worry consumed you, you feared what you could never be in control of. When he was 'out of sight and out of mind' was when you felt most relieved. Yet deep down, you knew you were his best protector.
I've glimpsed you in the Supermarket, crossing the street, between the pages of a newspaper. Your grown up son is always one step behind you, sometimes holding your hand, sometimes not. And you have the anxious gaze of someone wanting to run free. And someone who has too long been on red alert. But who knows where any of us would be if we had walked your walk.
You both have your heads bent low, to avoid our gaze, so used have you been to 'trying not to exist', for although you love your son, you wish in equal measure that he'd never been born.
I cannot judge you, though many do. For you are one of the few that braved the storm, paved the way, created change whether you realise it or not. Your resolve has taken a battering, you cannot let go of the dream of a simpler life, yet it is precisely this lack of acceptance that has pushed you to your very limits.
But you can look up now. Please lift your head and meet our gaze. We are looking in your direction to share a smile with you. The world is a different place today and our children are growing up with outcomes that are worlds' apart from those on offer when your son was born. Behind the walkway you beat down, a smoother path has been paved.
Please look up and see. Give our children, young and grown, the rights they are due. Please join hands with younger generations today and don't drag us back to the hardships and prejudices you experienced. Please help us change the world and don't advise future Mums based on what has gone. Don't pass forward your bitterness. Don't join the masses who don't value our children. The rest of us wouldn't change them for the world.
We share more common threads than you know dear past generation Mom. The worry, the guilt, the anxiety, the tiredness, the exasperation. But wait, show me a parent in the land who doesn't live with these feelings for any of their offspring.
Please look around you now and see a different way for you and your son. It isn't too late to accept and love him for exactly who he is and to show the world the value that you place on him.
Now is the time to listen to his voice, to let him show you what he has to offer.
The following is a quote from a poem by Mum Sue Bessell, writer of play Up Down Boy which was co-written and acted by her adult son Nathan:
I have an extra chromosome - I stand out from the crowd.
And of me I know - My family are very proud.
I have an extra chromosome - Some people think that's sad.
But that it makes me who I am - I am so very glad.
I have an extra chromosome - Please don't stare and pity me.
For I like You for who You are - See, acceptance is the key.
Sue writes so beautifully and eloquently about acceptance despite a lack of support
You might also like to read Uncle Martin: another perspective on one man's life by Kristian Naylor.Anila
And finally, the following is written by Anila R. Jolly, the sister of a man who has Down's syndrome.
The pair are around the same age as the siblings in the article and I think her response provides the perfect balance to the Mail piece, whilst highlighting the extent of the shock that was felt within our community when it was published. Her words are the ones we need to leave ringing in our ears:
"I want you to know that not all of us, who have family members born with Down's syndrome in the 1960's, feel the same way as Gillian Relf does. Indeed, we did swim upstream, against a raging torrent at times - a torrent caused by the era in which we lived. But in the end, most of us won out against the battles we faced. And we, like you, are resilient, strong and equally and immensely positive for our loved ones.
I share a deep protectiveness and love of my brother with my parents. Our family do not have the regrets that Relf described. We have had a difficult time - I cannot deny that. Things were harder then, and kids with Down's syndrome just didn't receive the essential educational stimulation they needed to progress. And, I know that in the future - when my parents are gone - I myself will face my greatest challenge yet in supporting my brother through the time ahead of us.
I also want you to know that we have none of the bitterness that is so evident in Relf's article. My brother (who is three years older than Stephen), has brought us so much joy and happiness. I never wish for life to have been any different - whatsoever. My parents and I together share this feeling of positivity.
Once one understands a life situation that one is faced with and develops acceptance, self acceptance above all, one gains the capacity to deal with that situation. One can then see the joy and positivity inherent in one's experience. We, as a family, have been blessed to know my brother, and I have been blessed to be his sister. Without him I would not have been the person who I am today - I hope that I am a better person for having shared my life with him.
I know that your children, born nowadays, have so much potential - so much to look forward to in their lives, and so much positivity to bring to the world. I really want you to know that not all "past generation mums" or families, feel the same way as the author of the article in the Daily Mail.
I totally support you in your journey ahead and I absolutely know that you will experience joy and happiness from the life in front of you - just as we have done in ours."