Saturday, October 21, 2006

Is Down's Syndrome an Issue?

I don't often make an issue of the fact that my daughter has Down's Syndrome. In fact, one of my earliest postings on this blog was titled "Down's Syndrome is Not an Issue". I don't hide the fact, and occasionally it becomes part of the background for a story, but the reality is it's just a part of life.

The fact that my daughter has special needs is really about the fact that she's my daughter. Every child has special needs. Every child is a unique individual with specialities and disabilites. Some are naturally physically coordinated, some have a good spacial awareness, some are endowed with empathy, and some are not. As a parent you deal with the needs of the child, whatever those needs are.

Where Down's Syndrome does become an issue, is in the reactions of other people.

The human race has an appalling track record of seeking to destroy that which it fears, and what it mostly fears is difference.

According to statistics I keep finding, upwards of 80% to 90% of pregnancies carrying children with Down's Syndrome are terminated. This is nothing short of Eugenics. The medical establishment encourages mothers to have the tests and then sets up an expectation to terminate. The default situation is NOT to carry through the pregnancy.

Then if you do keep your child, people are amazed, in awe, or condemning. All they can see is the Down's Syndrome: they cannot see the child.

Over on Down Syndrome Life, BStrong writes of the way people would offer condolences after his daughter was born. Where were the CONGRATULATIONS that he had a beautiful baby girl?

For those who would like an insight into what it's like being the parent of a child with Down's Syndrome, then I strongly suggest you read his Open Letter. It has nothing to do with what the child is like, and everything to do with what being a parent is like and having to cope with other people's reactions.

Down's Syndrome should not be an issue, but ignorance makes it one.

15 comments:

quinn said...

Good morning kim....
IT absolutely should not be an issue and it IS ignorance that makes it one.

Here where I live I believe that alot of people have finally realized that down syndrome although it limits some children in some ways and others in other ways...it is not something that limits anyone from learning and leading a happy productive life.

Where I work now, one thing I like about this company is they absolutely have no issues regarding hiring of ANY individual no matter what their race,religious beliefs, physical limitations,age, sexual preferences, or intelectual ability.

There is in fact a young man working where I work that does have Down's syndrome and he works just as hard at his job as the rest of us. He is smart, friendly, conciencious. He helps to answer customer's inquiries as to where to find a product he helps with set ups and displays. All kinds of tasks , the same ones the rest of us are required to do.

There is a woman that is a muslim, and every day at certain times she leaves the work floor and goes to the break room where she dons her religious attire and does a few minutes of prayer and then returns to work. I think that is fabulous.

There are a couple of fellows that work here that have come from other countries and their english is not that great but they are working on it as they do their jobs. They are friendly, helpfull and included in every aspect as is all employees.

I think this is how it should be everywhere for every one...

We are all different, none of us is perfect , we all have things about us that are not as the "normal" the difference with down's syndrome is that darn chromosome thing. The one that causes them to have similar facial features and that is the part I think that society gets stuck at.

They visually group these kids and lose sight of their individual personality. And then go into stereo typing them as being a certain way.

I do not understand why people cannot just look at it scientifically and say ..( and I cannot remember if it is an extra chormosome or if it is one less choromosome that causes down's) but whatever.....the point is...it's genetics and it doesnt need to be a big freakin deal to those of us who happen to not have that syndrome.

We have millions of other problems , none of us are freakin perfect. We all do dumb things at times, we all make mistakes, we all are not able to everything we want to do, we have strengths and weaknesses, fears that hinder us from doing things ..all kinds of reasons that we are not able to do all kinds of things.

So, where is the difference?? I do not see it!!!

I think on a happier note that the kids of today are so much smarter than our generation. They see things for what they truly are. They see Individuals!!!!!!

( I am done my usual long windedness LOL ) .

Attila The Mom said...

Beautiful post, Kim. Really beautiful.

BStrong said...

Thank you for acknowledging my post “Open Letter” on your blog. Your sentence “Down Syndrome should not be an issue, but ignorance makes it one” basically sums up what we as parents must deal with on a regular basis.

Has it really been 15 months since we started our on line friendship; time flies when your having fun I guess.

I had actually written “Open Letter” a week ago and was hesitant to post it, but in the end I’m glad that I did.

Thanks for being a good friend and sharing your words of wisdom.

Kate said...

I agree Kim. Sadly, there are still far too many people who can only deal with the world by putting everyone into categories and labelling them normal/abnormal. Hopefully, the existence of blogs like yours and BStrong's will help to educate and inform them.

It's true, all kids have special needs because all are unique individuals, and even those labelled as having 'special needs' are kids first and foremost.

BStrong said...

Kim,
What's up with your latest YouTube video.It cracked me up.
B

Kim Ayres said...

Quinn - Sounds like the place you work at is really on the ball - if only everywhere was as diverse and accommodating

Attila - thank you

BStrong - I'm glad you posted it. It certainly got me thinking enough to put up my own post on the subject. It's a while since I've done that. Thank you.

Kate - when Meg was born I noticde that the nurse had scribbled in her notes the word "abnormal". I felt furious but didn't say anything. There are times when I wish I had.

BStrong - I guess you're referring to the brief Televangelist thing. It's for another blogger's site (The Fishwhacker Swindle) where a story had been built around the blogger characters that frequent his site. It's a long story...

Stella said...

Agreed Kim, it is other people's ignorance and preconceptions that makes DS an issue. I have often thought that society could learn a lot from Sarah - lessons in love and acceptance as Sarah accepts everyone no matter what their differences. Society has come a long way but has a long way to go yet.

Anonymous said...

My wife and I were discussing this over the weekend Kim...I have to say, until you pointed it out, I'd never even thought of it, but it's true. When we were kids we'd always know at least one or two kids with Down's Syndrome, but you just don't see it anymore. It's pretty frightening. Linzi and I both agreed when she's been pregnant that even if we found out one of ours was affected, it would not stop us having him/her. I think it's pretty fucked up that the choice to terminate based only on this is so commonplace these days.

Great post.

Mine is a Gin said...

I can only agree with you on the issue of testing & termination. When I was pregnant with my eldest daughter (now 13) I went for all the tests I was offered (you do think you're doing the right thing for teh right reasons).
My pregnancy became complicated for other reasons, namely that I had developed a huge ovarian cyst which needed removing before it compromised my pregnancy, and in the midst of this my test results for DS was showing borderline positive. The hospital swung into action, sending me for detailed scans to find out for sure. As it was it proved to be a false alarm, but I felt pushed into a situation where I would be made to make a life and death decision about my child, one I could never make.
With my second pregnancy, I didn't take the tests. I knew that I could never take that decision to terminate the pregnancy. I wanted my child whatever that was going to entail.
I can't possibly know what it is like to deal with other's prejudices, but I can identify with the unconditional love for a child, and I enjoy reading your posts as ever.

Dr Maroon said...

Hopefully, at some point I shall distil the 20 pages your post prompted from me, into something approaching a coherent comment.

Kim Ayres said...

Stella - I agree completely

Kav and Mine is a Gin - When Maggie was pregnant with our son, Rogan, the medical centre got the dates mixed up so thought that he was in a high-risk category for having DS.

We were offered the amniocentisis and it was made perfectly clear that if the DS was confirmed then termination could be quick and easy.

For 24 hours we agonized about what to do, especially as the amniocentisis carries a risk of aborting the pregnancy regardless of the state of the child.

We finally decided that we wouldn't have the amnio as we would not terminate the life of our child. The following day we were informed about the mix up on the dates and that the risk was in fact very low. 5 months later Rogan was born without DS.

So when Maggie was pregnant with Meg we didn't have the tests as we'd already been through the decision process with Rogan 3 years earlier.

Kim Ayres said...

Dr Maroon - we seem to have had one of those cross-over moments again. I look forward to your comment, however long.

SafeTinspector said...

"According to statistics I keep finding, upwards of 80% to 90% of pregnancies carrying children with Down's Syndrome are terminated."

Kim, I think this probably goes to wether or not you think abortion is murder to begin with, and ends with wether or not someone would voluntarily put themselves in a position to have a permanent dependant.
There may even be flavors of what reasons people have for making babies to begin with. Continuation of the species, contributing useful societal members to the next generation, carrying on the family name, whatever. Most of the traditional reasons for becoming a parent are not necessarily served by having a child with significant learning disabilities.
I can't blame a parent for not wanting to have to go through what you and other downs syndrome parents must go through.
And though you may judbge me for this statement, I must be honest with you: If I knew for a fact that Heather were to bear a child suffering from a major learning disability we would probably choose to terminate as well.

"The human race has an appalling track record of seeking to destroy that which it fears, and what it mostly fears is difference."
I can take this statement two ways. The first is that you are talking about people wanting to kill or hide people suffering from downs syndrome. I can't agree more that this is a societal wrong. Maltreatment of the learning disabled is abhorrent, should be abhorrent to everyone, and should never be tolerated. Neither should coddling, or putting the disabled up on pedastals as if the fact of disability automatically renders one a hero. (Taking care of someone with a disability, Kim, is an automatic hero card)
But the other way to take this statement is that if there were an in vetro cure for downs syndrome you would have chosen not to use it, and would encourage others not to use it. I don't think that's what you really meant though, so I suppose I'm just a bit of a mixer.

purple_kangaroo said...

Excellent post. We skipped the prenatal testing because there was no point in doing it for us. We felt that anything severe and immediately correctible with surgery, etc. would show up in an ultrasound. If it wasn't something that would require intervention before or immediately after birth, it wasn't urgent to know about it during the pregnancy.

An abnormal test result for Down's or most of the other things tested for in an amnio wouldn't have changed our plans or our attitude toward our child, so we just opted out of all the screenings.

Kim Ayres said...

Welcome to my ramblings, Purple Kangaroo and thank you for taking the time to comment.

If you entered on this post, you might be interested to know that in response to SafeTinspector's comment above, the debate continued into the next post:
DS - An Issue of Life?