Wednesday, 5 October 2016

A reply to Downs Syndrome TV programme

Well what i can i say, i saw an article by Sally Phillips last week a friend pointed it out to me, and then watched the programme last night...." A World Without Downs Syndrome? http://www.bbc.co.uk/programmes/b07ycbj5

My whole work is founded on the joy and pleasure i receive from many people who are labelled with 'disability' and sharing and showing their talents within society, enabling opportunities and spaces so we can all benefit from each other.
 I am horrified, speechless, angry, upset, disappointed ( and worse, not surprised) and need to reconsider if in Shallal we ever do obviously 'political' work! I think i never have partly, as those of you who work with me know, that i am quickly outspoken! also i am not sure i have a gift for it and i feel people with support needs have enough to face each day, without emphasising how some of society is unsupportive and against you. I prefer to cultivate the positive and know we have changed some peoples perceptions, even if only a little.
We all need experience and understanding. I believe we are all equal, unique, mysterious, wonderful and loved in the eyes of God ( all created in His image) and that is enough for me.

When i first started seriously thinking about it at 17 I thought that a really good society would place the care of those were vulnerable at it's heart and the love and care for them would then radiate out into the love and care given throughout society. I would come home in tears to my mother, who was trained as a nurse, and talk to her about how unfair it all was! her ethos permeated all my thinking about it, everyone is important we are People first. I am very grateful to her.

Our last child Luke was born when i was 44 and i was offered screening for Downs syndrome the midwife continued to promote it to me even when i said, "Some of my close friends have Downs syndrome and i am finding this offensive, i wouldn't have a termination anyway so please stop!"
Also many years ago i had a friend, who was an older mother, who had an amniocentesis test and then had a miscarriage and so lost her baby, her despair was severe.

It is hard to live in society where some of the values promoted are not those we believe in, but there has always been a fight and in my early work it was the old institutions and hospitals people with perceived disabilities were put in. I have been overjoyed in recent years to see so many children and people with downs syndrome loved in their families and in schools and society, lets not loose this.
Choice is interesting and talked about a lot in the TV show, choices can be wrong and misguided they are not in themselves always good, we all need education, experience, support and real help.

Few people ever talk about the regret and grief some mothers experience after choosing termination, I have heard many speak about it in private, it is not easy, and we don't judge but we need to be aware and make fully informed choices and when you are pregnant you are very vulnerable.

Lets just choose to love and support each other more and to celebrate the beauty and difference we all hold.

If you have got to the end of this, I'm posting it when i need to be advertising our show tomorrow, come along and see for yourself the real beauty and gifts of many people, (including those who have Downs syndrome) who happen to be our good friends and make our lives better and richer for knowing them.



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