just post

This is my post in the Just Post roundtable series. I have installed the button in my sidebar but it won’t function until March 10th or so. Right now you’re not too late to join us. If you’re interested, click on the button below.

When I was pregnant with my son the pregnancy was deemed high-risk. And do you know why? Because of the simple fact that I got pregnant in the year that I turned 35. Thirty-five. Had I been pregnant one year earlier it wouldn’t have been considered risky at all.

So what? Because everything went well. But I didn’t know that when my doctor advised me to get an amniocentesis. Because you know older women have a higher risk of having a handicapped child. (By the way, after my first post about “handicapped” people I realized that the term is not political correct. I’m sorry but I don’t know what to write instead. “Special needs” seems a little ridiculous.)

To me this decision was a no-brainer. Have my belly punctured with a needle? To find out more about my baby? Are you nuts?

Apparently the rest of the world thought I was the nutty one. Everybody had an opinion on this. Of course I should do it. What if I had a handicapped child? Indeed, what if? I knew that I would have kept the baby anyway. And what if the amnio hurt the baby? I’ll give you the math: the risk of having a baby with a chromosome defect for women age 35 to 37 is 1.6%. The risk of losing the baby through the amnio is about 1%. (It is less than 1% if made by a specialist.) In my world that means that the risk of having a baby with a chromosome defect is only slightly more probable than losing the baby through the amnio.

But that’s not all. A factor to be considered is also what one would do if the baby were “defective”. (And this is why I think that this is a social issue not only a personal story.) If there had been anything wrong with my baby there would have been considerable pressure not to have it. I think that knowing that one will have a special needs child is stressful enough without people telling you that you’re doing a disservice to society by having it. If I had gotten pregnant just a couple of months earlier no one would have tried to persuade me to be punctured by needles. (Sorry, but this picture was just horrible to me and still is.)

What I did do was let them make a very big and detailed ultrasound. I was okay with that because I knew that it wouldn’t hurt my baby. And I knew that I would have kept it anyway. Don’t get me wrong, I’m totally pro-choice, only my own baby already was a human being to me when it was just a tiny clump of cells.

While I was making that decision I met with the overpowering opinion of almost everyone I met (apart from one friend) that if the baby were handicapped his life wouldn’t be worth living. That it would be better off not to be born. And of course that handicapped people are expensive.

I was flabbergasted. You know, most people aren’t born handicapped. There are only a few things that can be seen in pre-natal diagnostics. And what if something went wrong when it was born and it ended up with spasticity? What if it had a rare gene defect like muscular dystrophy that you won’t see until a few years later? What if my baby were already a toddler and then almost drowned or had an accident and ended up different than before? Would those same people think his life not worth living then? I don’t think they would tell me though, even if they thought so.

As I have told before there are a lot of people who secretly think that handicapped people should be put away so that they don’t bother the others. And that surely there shouldn’t be money spend on their education since there isn’t enough for us normal people anyway. This makes me very, very angry.

Because that indicates that this is something that can’t happen to us. That if your child is deemed healthy and “normal” you’re destined for the happily-every-after-ending to your life. When your mother was punctured and diagnosed then nothing can ever happen to you. Nobody will ever have an accident, nobody will catch a disease, nobody will ever be old an feeble. Of course you will go through life with a right to stay youthful and strong and healthy. And then maybe die in your sleep at age 101.

I have the feeling that all this fuss about pre-natal diagnostics (and from what I hear German’s pregnant women are more thoroughly diagnosed than US ones.) is so that everybody has a feeling of being insured against, well, life.

Addendum: I just saw Jenn Satterwhite’s post on “Teaching understanding of disabilites in elementary school” on BlogHer and wanted to point you towards it.

Technorati Tags: handicap, just post, medicine, motherhood

I missed my hundredth post. Well, didn’t miss it as such but I didn’t know that it was No. 100 while I wrote it. But then there are posts in this blog that really don’t count like the one that’s the oldest in the archive (and still in German). That was neither my first post nor the day that marked the birth of this blog for me. I opened my blogger account in May 2005. My husband wanted a website and I said, “Well, but you have to have something that makes people coming back, like news or a blog. Like Neil Gaiman has.” He asked me how to do it, I didn’t know, mumbled something about blogger, and maybe free service, went to my computer, set up an account, wrote something about the weather and my son disclosing the name of the town where I live, went back, opened another account for him, said, “Look here’s your account, this is your password and if you have time I’ll show you how to enter new posts.” That was it.

If you’re interested, his blog is still there, though his website has its own news-page. (And it’s about as easy as entering Fort Knox to post something there, it needs me, my list of passwords and three different account or user names to enter anything. It’s done best with phone assistance by our friend who programmed the whole thing.) Oh, and the whole thing is in German. I still have to translate everything into English and then have our friend do whatever he does to create new pages…

But back to this blog. There was that stray entry in August 2005, and then silence. Think of it as the gestation period of this blog. Nine months of expecting. Then I decided to make the switch to English and this marks what I count as my first official post: language switch. Since then I found a lot of blogs not dull at all. In fact I found so many that I can’t read them all if I want to do something else in my life than reading blogs. The first glimpse of what a community there was, I had when I joined blogher. Back then this blog was still called “Diapers and Music”. I started blogging away enthusiastically and then stopped to think about who on earth would want to read this. As those of you with blogs of your own know it is a bit of work. And I wanted to be read, otherwise I could have stayed with my paper journal.

When I started telling friends about the blog just to gain a handful of readers another problem emerged: most of them wouldn’t read something in English. But then, most people browsing the blogher blogrolls wouldn’t read something in German. Dilemma. I solved it in true Susanne-fashion, I did both. The twin to this blog, its German mirror was born 8 days later: “Windeln und Musik“. As of December 1, 2006 diapers vanished from my life. I renamed the blog. It’s very hard to come up with something that works in German and in English. My husband suggested “Reflexionen aus einem beschädigten Leben”, “Reflections from a damaged life”, which sounds great but a little too pessimistic for my taste. Even if it has something to do with Theodor W. Adorno. (It’s the subtitle of his “Minima Moralia“.) My life doesn’t feel that damaged though.

So I changed the name to “creative.mother.thinking”. Creativity and parenting are the cornerstones of this blog and obviously I’m always writing about what I’m thinking. I’m not that sure about the dots any more. Maybe they are silly. Preposterous. Do you think I should get rid of them? Name it “creative mother thinking”? Maybe I should.

Anyway. It’s been a year. A year of blogging, a year of walking through my day mentally composing blog entries all the time and actually writing about every third of them. For months I felt lonely with my blog. I had about 3 readers, well, 3 hits a day and 95% of people stayed only one second or less. I have spent more time on this blog than I ever thought possible, I have translated every post bar one, and have contemplated giving it up for the sake of my music about every other month.

During the last months readers have gotten up, this blog’s technocrati ranking has gotten up to 147,303 and I feel like I’m part of a community. I have found friends like De and Liv, and I even was part of a big blogger wedding for social justice. I found out that writing is more precious to me than I though and embarked on NaNoWriMo. Through which I found friends who live a little closer to me. So, yes, as much as I doubted it as first, blogging really is a social activity. It took me from sitting in my house in suburbia feeling lonely and disconnected to sitting in my house in suburbia feeling part of a community filled with friends. Sometimes I even get out and meet them in person. Mostly I don’t. One of the reasons being that I can’t just take a plane and travel halfway around the world. But then nowadays the world comes to me through my little computer screen.

And to complete all this I have to say that I started yet another thing I don’t have time or energy for. When I did NaNo I thought to myself, “Why isn’t there such a thing for songwriters?” Well, surprise, there is: FAWM. As in February album writing month. 14 songs in 28 days. I plan to fail spectacular since a) I signed up one week late, b) I have written all of three or four songs in all my life, c) I don’t even had the time to translate my last blog post for the whole week, and d) I just have to make rest and sleep a priority right now because otherwise I’ll keel over. Nonetheless I signed up and wrote almost a whole song during the last week. It only needs some lyrics thrown at its bridge…

And don’t forget to check out the Just Post posts:

Technorati Tags: blogger, blogging, just post

January is almost over and I still have to write my social issue post. I promised, so I deliver. When I was a child and young adult there just were no handicapped people visible. The only one I knew was my cousin. She had a hole in her heart and when the doctors operated to fix that they found out that everything was connected to the wrong place and so they had to leave it open. She always had a very bluish tinge and her left arm was paralyzed. We didn’t meet often, she was about five years older than I and there was only one year when we visited each other and talked. I never understood why my mother always whispered when talking about her. To me she was my cousin. Different yes, but then everybody is, in a way. Nobody told me that she had been living on supposedly borrowed time since birth. When she died at the age of 30 she had lived far longer than expected.

Apart from that I was one of those people who shy away from people in wheelchairs on the subway thinking, “I hope he doesn’t ask me to help him, I hope he doesn’t ask me.” And then I was unemployed after my last ever office job, knowing I’d never work in a place like that again, looking for a job in my own field. I was so desperate I even considered teaching. With hindsight I say that was the best move I ever made, but then it seemed terrifying. A friend of mine worked as a music teacher for grades 7 to 12 in a private school. She got pregnant and looked for somebody doing her job while she was on maternity leave. I really needed a job, but teaching? In a school? And in a private school with 60% of physically handicapped students? “But what shall I do?” I asked, “I don’t know how to help them. I never had anything to do with handicapped people.” She told me not to worry. Those people were very used to tell others how to help them. They do it all the time.

It’s a very small school, only 14 students per class. And I taught music there and found out that I love teaching music but that I am no longer able to work in a hierarchic system. Some of the students I liked and some I didn’t like. It is a marvelous school. they have helpers for those of the students who can’t do things on their own like eat, go to the bathroom or write. We had students with all kinds of handicaps from all over the country. Suddenly I found out that even Germany where there are many regulations and everything has to have access for wheelchairs is not as friendly as I thought.

Daily contact with people with muscular dystrophy, spasticity, paraplegia, osteogenesis imperfecta, spina bifida, and whatever changed my attitude a little. The first time I heard a fellow teacher saying, “Oh, he’s only a paraplegic, he can do everything on his own.” I was a little speechless. But compared to others… Nowadays when I meet somebody in a wheelchair in the subway I can see, if he’s a paraplegic, basketball-playing in a sports-wheelchair who is perfectly capable of maneuvering his wheelchair up the escalator, and probably stronger than me or if it’s somebody who’d like to have a little help pushing the button that opens the door.

And I found out that handicap or not, we all are just people. Not knowing how one can help certainly is no excuse for looking away. If you were handicapped like, let’s say, you broke your foot and are on crutches, or you broke both feet and are in a wheelchair, would you find it acceptable if people looked away because they were afraid of doing something wrong when helping? Would you find it acceptable for people to rush past you not helping you to maneuver your wheelchair out of the subway? Would you like to stay at home always, because you can’t drive a car or push a grocery cart on your own?

There’ll be a second part to this post, because again, I am under time restrictions here, but for today I have a task for you: when you’re out today, try to look out for people who might need a little help. Or even if they don’t need your help at all, just make eye contact, smile and treat others as equal human beings.

Thank you. End of sermon for today.

Technorati Tags: handicap, social justice