Sunday, August 30, 2009

What is Normal?

Dan of Down With Oz and The Oz Squad has presented a challenge: write an essay on what "normal" is for the purpose of educating people out there about Down syndrome and the value of life.

Dictionary.com defines "normal" as:

conforming to the standard or the common type; usual; not abnormal; regular; natural.

That's pretty broad, don't you think? What does it mean? As far as human beings go, what is normal? What is "standard," or "the common type"? What kind of person, exactly, is "usual," "not abnormal," "regular," or "natural"?

I have six kids, so you might think I would have a pretty good idea of what "normal" is.

Let me tell you about my kids.

Kevin, age 12, is "normal" in that none of the prenatal screenings I underwent when I was pregnant with him revealed any anomalies. He's healthy. He's also gifted, meaning, I guess, that's he's not "normal." Giftedness presents its own challenges and might be considered a "special need. He's kind of a motormouth, and has an attitude much of the time, being close to 13 and all, which makes him kind of a pain in the ass sometimes. Also, he's genetically predisposed to developing alcoholism, drug addiction, depression, and who knows what else is lurking in his gene pool. Maybe I never should have had him.

Joey, age 7, is also "normal" in that none of the prenatal screenings I underwent when I was pregnant with him revealed any anomalies. He's healthy. He's also gifted, meaning, I guess, that's he's not "normal." He's on the smaller side, and probably always will be, thanks to his dad's genetic contribution. So he'll probably get teased and picked on a lot (and in fact already does). He's also overly sensitive - some might call him a crybaby. He's afraid of loud noises, like the fire drills at school. Also, he's genetically predisposed to developing alcoholism, drug addiction, depression, and who knows what else is lurking in his gene pool. Maybe I never should have had him.

Daisy, on-the-brink-of-5, is "normal" in that none of the prenatal screenings I underwent when I was pregnant with her revealed any anomalies. Oh, except that she's a twin. So that makes her not "normal," right? I mean, twins aren't "the standard," right? She's really bright (maybe even gifted), helpful, and sweet. She's also wracked with phobias. She's terrified of animals (most notably dogs), public restrooms, and stairwells. To the point that she goes into hysterics and if you witnessed it, you might think she's going to pass out. We don't know how or why these phobias developed in her, but she seems to have no built-in coping mechanism. It's a problem. Also, she's genetically predisposed to developing alcoholism, drug addiction, depression, and who knows what else is lurking in her gene pool. Maybe I never should have had her.

Annabelle, on-the-brink-of-5, is "normal" in that none of the prenatal screenings I underwent when I was pregnant with her revealed any anomalies. Oh, except that she's the other twin. So that makes her not "normal," right? I mean, twins aren't "the standard," right? She's funny and mischievous and affectionate and smart. She has a condition called trichotillomania, which causes her to pull her hair out compulsively. Pretty freaky, huh? Also, she's genetically predisposed to developing alcoholism, drug addiction, depression, and who knows what else is lurking in her gene pool. Maybe I never should have had her.

Lilah, age 2-almost-3, is "normal" in that none of the prenatal screenings I underwent when I was pregnant with her revealed any anomalies. She's got a huge vocabulary for a 2-year-old, which might indicate giftedness. That would make her not "normal," I guess. She's chubby compared to all of our other kids, which also makes her not "conforming to the standard." She's actually genetically predisposed to obesity, in addition to alcoholism, drug addiction, depression, and who knows what else is lurking in her gene pool. Maybe I never should have had her.

And then there's Finn. He's a year old. I didn't have any prenatal screenings when I was pregnant with him, except for a "standard" ultrasound which did not reveal any anomalies. He's happy, healthy, affectionate, and smart. He's learning new things about the world around him all the time. He's curious and inquisitive. He plays and sleeps and cries and laughs and poops just like most babies his age. Oh, also, he has Down syndrome. Which I guess means he's not "normal." And there are those who think, based on some abstract ideas and impressions of what's "normal" and what's not, that a child like Finn shouldn't even be here.

There are people out there who believe that a baby prenatally screened as "not normal" should not be born. There are those who feel that people with Down syndrome who are living among us in the world shouldn't be. They're not "normal." They have "problems." They're "retarded." They're a drain on the economy with all their needs.

Again, what is normal? I have come to the conclusion that normal, like beauty, is in the eye of the beholder. One person's normal is another person's weird.

In some respects, each of my kids is completely and utterly normal. In other respects, each of them is not normal. They're people. Unique and individual. Am I normal? I don't know. You might think so, because I don't have a diagnosis or label that society uses to define me. I'm smart and productive and generous and honest and loyal. I'm also prone to depression. I'm short-tempered (or as my husband says, a "hot-head"). I'm an atheist. Do those things make me not normal? Maybe. Maybe I never should have been born.

My first husband was a severe alcoholic. He used to tell me, "My drinking is only a problem because you have a problem with it." And while I think that when you're talking in terms of a destructive issue like alcoholism, this is very flawed rationalization, it fits when you're talking about a person who has Down syndrome. The fact that Finn has Down syndrome? It's not a problem in our home, in our family. It's only a problem out in the world because certain people have a problem with it. And why? Does it reflect something back at themselves that frightens or disgusts them?

What if we could prenatally screen for every aberration under the sun, and do away with those babies before they're ever inflicted on society? Autism. Diabetes. Cancer. Alcoholism. Infertility. Depression. Alzheimer's. Dishonesty. Apathy. Arrogance. Homosexuality. Let's take it a step further. What if we could somehow look into the future and know which babies were going to grow up and be involved in some terrible accident or contract some illness that will leave them disabled, and let's do away with those babies before they're born too. Wouldn't the world be a better place if it were full of homogenous, normal people?

Are you normal? And if you consider yourself to be normal, how are you making the world a better place?


12 comments:

Ria said...

You illustrate the point very well. That lady (her real name is Olivia Mora) that I argued with on twitter is just so narrow-minded. She was all about "preventing what can be prevented" and strongly believed that people with Down syndrome were in pain and suffering, based on her volunteering experience with metally challenged adults. She has no empathy, no respect for others, no class, has a skewed concept of 'normal'. She views me as selfish and irresponsible for having a child with Down syndrome. I must not be 'normal' then to even think that individuals with Down syndrome can lead fulfilling lives and contribute to our society, sometimes even more than people without Down syndrome.

teachermom4 said...

Very well said. We're all different and that's how it should be.

I've been following your blog since Finnian was born and you started the blog. You sent me a message when our daughter was stillborn. I posted sporadically on the Large Family forum on preg.org.

I can empathize with you to a certain extent about the difficulties Finnian has and people's reaction to them. Our youngest son who is 3 has speech apraxia and his speech is unintelligible to a lot of people. Sometimes certain kids at church (who aren't so nice to begin with) laugh at him. And each time I jump on them with both feet. They will never learn if someone doesn't expose their ignorance for them.

Also I wanted to let you know that my 4th grade class had a very good discussion about why the word retard was not such a good word to use and the history of it and how people use it now in a very derogatory manner. They seemed to get the point and I told them that I would not tolerate that word.

Mu not normal in my family is-oldest son-gifted, next son-gifted, daughter-extremely emotional and our youngest-speech problem-should I have had them-OH YEAH!!!!!!

Mer said...

Great job, Lisa - well put!

Tara said...

Excellent post, Lisa! Goes along with my "every child has special needs" philosophy. Having six kids myself, I think I am more than qualified to speak to this issue, as well. I think it's a gift that with Ds, at least we have some inkling as to what some of those needs will be.

I had no indication that my then-2yo would climb out of her crib and break her leg, or that my 9yo would have such issues with lying. There was no prenatal test to warn me that my 12yo was going to be so bossy or that my 4yo was going to have speech apraxia. I wonder how I would've felt if my middles son's tendancy to wander off had been prenatally diagnosed.

I love the title of the book by Patsy Clermont (sp?) entitled Normal's Just a Setting on Your Dryer.

Monica Crumley said...

Great post. I think your next to last paragraph is what really makes me worried about prenatal testing to "do away with", I mean "screen for" children like ours and eventually other "abnormal" conditions. The world is a better place because of our differences. Each of my four children are as "un-normal" as yours and I would choose to have them any day.

Mel said...

Down Syndrome is normal. It occurs in all cultures and ethnicities in the same rates all across the world. So it is part of the 'normal' mix. It would be abnormal NOT to have people with DS in our communities :) Normal is highly over-rated!

Darla said...

This is much like my thoughts that I blogged about right before Ashton was born. As you know, I refused any amnio because no amount of information was worth jeopardizing my son's life. Still, I must admit that I was very apprehensive the day he was born.

Most people abort babies with down syndrome because they are afraid. Everyone has a fear of the unknown and to everyone who doesn't have a child with Down Syndrome, it is very much the unknown. The fact is, every child is a venture into the unknown.

Other people might abort a special needs child due to lack of health insurance or support. (I use that term lightly, I think all children have special needs, it's just that with no label it sometimes take longer to figure out what they are.)

The more people realize that life goes on and people do live happily ever after a diagnosis, the more supportive our health care system is, the more people that are educated, the less woman there will be aborting children with a prenatal diagnosis.

By the way, there have been genetic markers found for homosexuality. It proves that some people have the genetic pre-disposition to be gay. It's not an absolute. The frightening thing is, while it may empower the gay community, it will also be a double edged sword because someday, they may make this information available to the public who may abuse it in the form of...prenatal diagnosis.

Can't we just love our children for who they are?

Sharon said...

Very well written, as always. Since having Brennan, I actually cringe every time I hear the word "normal" or "abnormal." Down syndrome is so often described as a "chromosomal abnormality" - shouldn't it really be a "chromosomal variation"?? I appreciate each of my children's differences and each of their very unique needs. A world without differences, without variety would be a very sad place.

ashleypmo said...

Awesome post! My youngest (Mason, 4) has Ds, and my oldest (Riley, 14) raises awareness of Down syndrome through her public speaking platform. She wrote/delivered a speech titled "Another kind of normal," in which she stressed the fact that we are all on this beautiful continuum of "normal."
Love your blog!

Larry said...

Love this post - am copying it and sending it around via email and on my facebook page! Lisa

Carla said...

Thanks for getting me thinking.

Jeanette said...

Normal-smormal. I don't think anyone is "normal". I am on the Oz squad and I have just been blown away at the ignorance of people out there. Words are so powerful and when these people write about "suffering" and "preventing" it just drives me insane! Great post... we have a ways to go for our kids.