Wednesday, 1 May 2013

Disposable?

Recently I was listening to the radio and they were talking about a new, non-invasive test for Down syndrome.  I felt very passionate about the topic because I believe the reason for needing better and better testing is to make sure people can choose to terminate the pregnancy.  So I rang to have my say.  Well, I got on the radio, basically said that I felt it was concerning that it was being made easier to detect Down syndrome because people with Down syndrome have as much right to be here as anyone else.  Then I froze!

I couldn't take the conversation any deeper because I was nervous, caught on the hop and didn't want to offend anyone by speaking without considering.  I hung up feeling stupid.   I didn't really say anything and I sounded stupid publicly!

I am the mother of a child with Down syndrome and we knew early in the pregnancy that our son had Down syndrome.  We had decided not to test although we knew there was a fair chance, given our ages.  However at the twelve week scan it was obvious that something was wrong with our child and I was talked into an amniocentesis.  Then we had genetic counselling.  Everything we were told pointed us towards considering aborting the pregnancy.  (There were some major concerns about his heart)  We chose against aborting.
We had a family day out at a winery on the weekend.......

 So here I am now, publicly telling you my thoughts and feelings in a more considered manner.  I was upset about the new testing.  Very upset.  Am I old fashioned for my views? I believe that the world is not perfect and it is not supposed to be perfect.  If we can control the type of person that is born are we not creating an artificial world?  And how do we judge a person's worth?!  Are they only worthy if they are of full intelligence?  What about a physical impairment?  Should we do away with people with an IQ of less than eighty as well - or keep it at under seventy (the point at which you are intellectually disabled for official purposes)?  Imagine if you could test for future illness?  Then what?  Should we chose not to have a child who will have an acquired brain injury?  Not have the child who may have cancer later in life?  Not have the child who will get multiple sclerosis?

where Buddy Boy and Pumpkin chatted........
I'm dealing with two issues here.  The unfairness of being able to decide who should have a shot at life and the fact that I firmly believe that the world is a better place because of diversity.  I don't want to live in a sterile environment where only the 'perfect' are allowed to exist and I don't know how we can possibly judge who the 'perfect' are.  Is it the good looking man with an IQ of 110 who's only interest is money and who chooses to walk all over people in his attempt to earn it?  Is it the people whose only ambition is power?  Scary thought! 
and danced to the band.....
And where is responsibility in all of this?  Surely it's normal and okay to expect to step up to the mark some of the time.  Now here come the really old fashioned sounding remarks - What has happened to society that we fight how life truly is?  We expect and demand that everything is easy and just how we want it.  We want the best of everything but don't expect life to be hard.  We live like kings and queens here in Australia but still don't seem happy.  Maybe we are fighting too hard against life and nature and need to spend more time embracing how things really are to truly find happiness in life.  This problem in expectations doesn't seem to just relate to disabilities but seems to be across the board.   It seems to be an attitudinal thing of "I want everything to be just how I want it.  Now!"  (Think Veruca Salt as a grown up) No, raising a child with a disability isn't an easy path but I don't imagine aborting leads to complete happiness either.

while our Belle (edging closer to her teens) chose to sit with us
I wish the world had different attitudes.  I think it would be a happier place.  We seem to want such an indulgent and carefree lifestyle that everything that is a problem becomes disposable.  Napkins we don't want to wash, plates and cutlery we don't want to deal with........  and now children that aren't perfect.  Isn't it time we use our intelligence and everything we have learnt throughout history to care for our earth, our people and use only our fair share.  These are the three ethics of permaculture and they make sense to me!  If everyone truly followed the ethics and principles of permaculture in all aspects of their lives, I believe the world would be a better place.

I'm very conscious that some people find themselves in a situation where they feel the need to come to a decision to terminate a pregnancy.  I am not making a judgement about this.  I just don't feel it's right to try and wipe out a type of person willy nilly.

16 comments:

Dani said...

My husband's half-sister was oxygen deprived at birth, and, as a result, she has the "appearance" of Down's syndrome, and, having just turned 41 she is roughly 8 - 9 in her mental years.

But, never has a more loving person be born, and we would certainly be poorer for not having had the priviledge of knowing her.

Linda said...

Dani I remember you telling me about her. You totally understand then about a person's worth. A person is a person and they bring love and relationships like everyone else!

Anonymous said...

HI Linda

I think that is a beautiful article.

I agree about not judging people who do choose an abortion, bc I never had to face that decision, and I don't know which way I would go. In fact I didn't have thes tests bc I didn't want to face that decision. But, I also know people in who, on hearing that a child was born with Down syndrom, ask how did that happen? How come it wasn't picked up? That attitude upsets me so much.

I like the Irish expression that they are living closer to God.

purplepear said...

Wonderful post. I agree with you. It seems that for a lot of people everything has to be perfect and right now. Perfect partner, perfect house perfect pocessions and perfect children.But what is perfect? perfect is just an image. But true perfection comes in nature. Each of these precious children bring qualities that we can all embrace. I have had the priviledge of working with children with extra needs and have benefitted from that association. They have brought joy and compassion into more life a long with a liberal amount of frustration, I may add.I certainly would not want to be the one to have to make a choice about who gets to live and who doesn't. Sounds a bit Hitlerish to me.

narf7 said...

My uncle Richard was a downs syndrome baby and lived till he was 70. We are all the richer for having him as our uncle and for learning that not everyone is the same. I find the need to "vet" our babies incidious. Soon people will be having terminations because they wanted a boy NOT a girl! Can you imagine the baby cull in China? I am like you, I believe that what happens, happens for a reason. If we try to redress what is happening artificially, nature is going to attempt to balance it all out to our detriment. Lets stop stuffing around with life and start learning how to live it scientists! If there was as much money poured into teaching people to be happy with their lives and to lead simpler more productive lives as there is to remedy the habits that we form in order to try to give our lives some meaning, each and every single one of us would be rolling in money! Stand up for what you believe in because there are millions of us right behind you and don't worry that you were scared to say your bit on the radio, who listens to the radio these days except people like us with a bit of time to give a damn and so none of us would have judged you :).

Kim said...

It' a tricky topic and I can understand how you froze on the radio . IT is really hard to explain things to people who have never experienced things I think,because you know that they could never truly understand. Having been a teacher for many years I have seen all types of wonderful children and it hasn't been their IQ that made them special ...quite simply the wonderful difference they made to those around them was what made them special.
I wish everyone could experience life with people of all different abilities and needs.We are blessed to have these people in our lives and it will be a poorer place to live without them.

cynthia said...

I can't even begin to imagine the challenges you face raising a child with a disability. However, I really appreciate you sharing your views with the world so openly in this post. Hopefully, a pregnant mother somewhere, someday might read this and it might just help her get through a tough decision.

Nobody's child is perfect - disabled or otherwise - and each brings their own beauty and wonder to this world. Thank you for sharing your views :-)

africanaussie said...

What a beautifully written post. I babysat a child with downs syndrome when I was in my early teens, and I fully believe as one commenter said that they live closer to God. He taught me the true meaning of love. Your little boy looks so precicous playing with his sister.

Ali M said...

very good post. I totally agree however I think in today's society people "think" they are not strong/capeable enough to deal with disabilities and its easier to not deal with it at all and have an easy ride in life!
Our strength comes from suffering and I know personally I have grown into a strong women ...hard as it is..

Fiona from Arbordale Farm said...

Linda you have previously posted about all the ways that Buddy Boy contributes and enhances the world he lives in. I am sure that everyone he comes in contact with are better off because of it. I am nearly 35 and Hubby is nearly 38 and we are trying to get pregnant so we know that there is always a chance that we could have a baby with downs syndrome. I think kids with disabilities add something special to the world and they have a lot to teach us.

Anonymous said...

Linda, you certainly managed to get your thoughts beautifully articulated on paper. I am going to keep this to read again and again and could not agree more. We do live in a world where we expect everything to be perfect for us and that every imperfection can be fixed. It is not the road to happiness. Love your permaculture annalogy.

Helen

Astra said...

beautifully expressed, you are a wonderful person. I wish everyone could see the beauty and PERFECTION in imperfection. And see every pregnancy as a gift, to be cherished, loved and appreciated. I know I will, no matter what.

Linda said...

Hi Anonymous, You're right. There does seem to be more and more expectation that the medical profession should 'protect' us from abnormality. Didn't someone actually sue because their child was born with Down syndrome without it being detected?

Kate, you've put it well. I feel the same way about nature and as for your last sentence... It's hard not to compare with that scary time in history.

Kim it's a good point you make that people often haven't experienced disability. What worries me is that they will have less and less chance to experience Down syndrome. It's just not a scary thing!

Cynthia thank you for your comment. I'd like to think that pregnant mums have the opportunity to think on this topic from every perspective so they can take a lot of the fear out of the equation.

Hi Africanaussie, I bet the experience made you comfortable with disability. And thank you, they're gorgeous together, aren't they.

Yes Ali. They 'think' they're not strong enough but with less and less opportunity to meet someone with Down syndrome, how do they know what it is so they can judge whether they ARE strong enough?

Fiona I agree that they add heaps to the world but do you know, although your chances increase with age, the majority of parents who have a child with Down syndrome are younger. Simply because more people are having babies in that age range. (And maybe due to not testing that age group - that may change now) Even a teenage or twenty something mum can have a child with Down syndrome.

Helen, Imagine if we reached for perfection. We wouldn't be happy until things were perfect (which is never) I really appreciate your lovely comment. It made me feel very good.

Linda said...

Narf7, for some reason your comment didn't appear on my blog, but I received it by email. A shame because it was a great comment! Nice to have your support!

leticia said...

I've come on over to visit your blog! My sister would love this and I'm going to send her the link. They are setting up a permaculture lifestyle at the moment. I love this post and am struggling a lot too with publicly voicing my opinions. I want my blog to be me, but trying to find the balance of being honest without being divisive is hard. There are so many controversial topics that I want to explore but I am also worried about offending people. Your kids are beautiful and look incredibly happy out on the land!

Linda said...

Astra, I love your attitude! You have hit the nail on the head. Thank you!

Leticia, How nice to have you visit! Thank you for your lovely comments. I know! It's hard to know what to say and what should be kept as a thought in our heads. I struggle with it. I guess I am concerned that one side of the argument never gets put forward these days due to political correctness but I think any potential mother would benefit from viewing this issue from every angle. Surely that helps them in the long run. Btw I'm loving reading your blog!