Sunday, November 18, 2007

Why the world hates my son

Let's just say it out loud, alright? The world hates my son. Or at best, they pity him, which I think is just as bad.

Either way, the world wishes they did not have to face the questions my son's life requires asking.

I'm a layman philosopher. Not an expert. I read philosophy because it brings me joy. I love the ring of the precise words as they sit next to each other. The way philosophers take a flashlight and shine it into the shadows, searching for another piece of the puzzle that explains or mystifies.

Because I want to know the truth, because I want to see the world as it actually is and not the way I wish it to be, I must conclude that my son is hated.

Statistics are numbers that capture real events. They are scratches on paper that represent breathed experiences. And so if it is indeed true that 90% of mothers choose to end their pregnancies upon learning their future child will be like Ian, I have little choice but to believe that the world would prefer Ian's non-existence over his existence.

The world would prefer that my son did not exist.

Why use the word "hate?" As a layman philosopher, I realize the importance of using the right words. Would you prefer "distaste" or "dislike" or "hostility" or "animosity" or "loathe" or "abominate?"

Perhaps you think my language is too strong. OK, then I will use the word "fear."

The world fears my son.


To understand this, we must first understand the Story we are living. What are the central themes that we all appear to subscribe to?

What do the movies tell us? Will Smith in The Pursuit of Happiness tells us that if we work hard we can overcome all obstacles. That is the theme of most movies created here in these union of states called America. Sister Act, Apollo 13, Dead Poets Society, Rudy and Flashdance are some that jump to mind right away. All films I enjoy, by the way.

Or look at the best-selling books this week: You: Staying Young, Become a Better You, The Secret, Women and Money, Think Big and Kick Ass in Business and Life by Donald Trump.

It's all the Story of Progress. Work hard, more education, do your best.

But Ian is a stumbling block on this road to Progress.

Ian represents a limitation.

And the last thing the Story of Progress can tolerate is a limitation.

I read stories of parents afraid to allow their "normal" children to learn in the same classrooms with children like Ian. These parents are afraid it will hold their children back. Never do we hear parents say that having someone like Ian in the class will improve their "normal" child's chances of making it into Harvard or Princeton or Oxford.

It may help this "normal" child understand more fully what it means to be human, but that is not the Story we are living.

Advocates for children with Down syndrome may cringe at this assertion of mine, that the world hates my son. They may ask how stating such a thing is in any way helpful to advancing the cause of people like Ian.

I am all for advocacy and education. Ian's life will be all the better for it. And the lives of countless people with Down syndrome are better today than ever in history.

If they survive the womb.*

I think it is best to start with the blinders off and eyes wide open. Let's not fool ourselves. Ian forces us to ask questions that are not part of the Story of Progress. Questions about fidelity and sacrifice and suffering and love stripped of it's Romantic and nauseating lack of staying power.

Yes, the world hates my son. But it desperately needs him.

*I am not talking about the issue of abortion
here , but more about the decisions made to abort because of a diagnosis of Down syndrome in utero.


Brett said...

The world hates truth. I find that where truth is welcome is only in the margins of culture.

I am inspired by you and need you and your son to help me with my life. My heart is opened up and hope for our time rekindled. I need that rekindling daily.

Say, are you a Samples fan?

Anonymous said...

Powerful words.

Aunt Bonnie said...

Tommy dear, I love you and yours.

Anonymous said...

They say that love is stronger than hate. Someone once wrote that there are three things that will last forever ~~ faith, hope, and love, and the greatest of all is LOVE. So, a lot of people will hate and fear, but some people will love and nurture..kinda like that picture called "Compassion" drawn by someone with D.S. And love is stronger than hate or fear. That gives me hope for Ian and for all those with "disabilities." It gives me hope for ME.

bella said...

This one stung. In the way that truth can sometimes comes and startle, disorient and shake me awake.
The world fears you son. (and i'm with you on the pity thing being just as bad if not worse then hate)
And the world needs your son, and needs you, the way you choose to not shy away from what makes some uncomfortable.
The Story you are living makes me want to know my own and live it with passion.
Mostly in this moment, I just feel raw and like something has been cut open and I'm not sure what will come out and rush in. Truth does this.
Thank-you for speaking yours.

Anonymous said...

Popping in to catch up on the last week. Much love to you all. I still pray for you guys. And what you said in today's entry is so true - there's a lot of conflict between God's narrative and the narrative of progress.

I hope tomorrow's appointment goes well, and that you all have a Happy Thanksgiving. Elsie

Michelle said...

dont get confused with the two "worlds", thats all. The internet world, the liberals and the progressives, they might hate your son. They might disguise it in intelligent words and pained glances. But the real world, the one in which you will raise him, the world of children and soccer games and Kindergarten, that world will embrace him. I promise. The two are so opposite that you sometimes walk through real life wondering where the ogres are hiding...WHO among us would have chosen not to give him life....most of the time, the ogres stay under their rocks, and the good people, the real people, will be moved by him and will love him. When you walk down the street, try to forget what you have read and what you know, and let your heart lead. Usually, not always, but the vast majority of the time, love will find him. and you will heal.

Leah said...

I don't think they fear your son, I think they fear their own abilities. They fear the unknown in their own lives. This is a day and age where people want total control of their lives, and having a child with a disability can bring some people to the unwanted realization that THEY are not in CONTROL of their life! When you're told you're going to have a child with DS, you have doctors who don't give ALL the facts, they only give the worst ones. That's why there was a big push for change within the OB/GYN community at a large conference held just weeks before Ian was born. There is fear of the "what if's". Will there be heart issues? Lots of surgeries? How will I deal with all those medical things? Do I want to put a child through that? They can only see that FEAR, because they haven't yet held their baby. All they know is the diagnosis, they don't know and forget that there is a person. They don't know that these babies are just that...babies...who are no different than any other baby. The doctors giving only part of the information don't help that at all. As you go through your life with Ian, you will hear people say, "I don't think I could do that." Well, that's because they've never been put in the position, so they have no idea what they're really capable of. They aren't able to see themselves in our position. It's not their hated for the Ian's of the world, it's their fear of their own perceived inabilities.

Carole said...

Oh for Pete's sake Tom, don't be so dramatic. I don't hate Ian. And I don't know who "they" are. If I am part of this hating world you talk about, then you are dead wrong. I don't hate Ian.

I will look the other way when I see him though, so I don't have to engage in talking with him.

If, heaven forbid, I get trapped in a room with him, I will talk down to him in a syrupy sweet voice that drools, "I am so much smarter than you."

I will write out a small check to the DS foundation to ease my conscience, but I am not going to invite Ian to my son's birthday party because it could put a damper on things.

I truly don't mind if Ian goes to school with my children. They will put him at the "Apple" table won't they? My son is at the exotic "Kiwi" table. (That's for kids with superior intellect)

And most of all, to prove that I don't hate Ian, I will pray for him. Pray that God will heal his little mind and help him to not stick his tongue out of his mouth in an uncontrollable fashion.

See? I told you I didn't hate Ian.

Tom said...

Brett: I struggled for about two weeks whether to write this post, but there you go, it's out there.

I would love to hear more from your side of the fence, about life and your kids and being a Dad in a world bent on making you another Donald Trump.

And I'm a fan of The Samples now (if you're referring to the band out of Boulder.) Great stuff! I "spent the afternoon" with them yesterday.

Tracy: Thanks, and thinking of you today.

Aunt Bonnie: I know you do... and it means the world to me and us. Thanks.

Anonymous: Love is definitely stronger than hate, but doesn't love loose this battle?

Isabel: It's hard, isn't it, this blogging life? Hard to know what to say and what not to say. Hard to know if I'm just being paranoid or if my words actually correspond to the world as it is.

There is art that shatters and art that heals, and we need both. It's often a very fine line. Thanks for sharing your perspective and taking time to sit with me through all this, Isabel.

Elsie: Good to see you back. I hope things are going well with you and thanks for stopping back in. I've got to email more often. :)

Michelle: It gives me hope to hear from others who have experienced good things for their children. I hope that Ian experiences life in such a way.

The thing I fear, I suppose, is that one day Ian's soccer team will be missing nine of it's eleven players, if you follow me. And I also believe that it is both conservatives and liberals who are emptying the playing field.

Leah: No doubt the medical world needs reform when it comes to dealing with this issue. And I'm glad there are those who are working to reform it.

But I also think that the "average Joe" on the street is living this Story of Progress" that leaves little time for people like Ian. The big house, nice car, etc. That's the dream that doesn't make room for people like Ian. At least that's my assertion here. Thanks for taking time to chat.

Carole: Thanks for taking my big rambling essay and capturing it's essence in a few good sentences. You hit on what I was trying to convey exactly. Thanks.

Elbog said...

Good stuff, my friend.
A couple of random thoughts, if you don't mind:
Don't underestimate the power of denial. Think Katrina - in all its forms. Denial fuels much in the "everyone can be a success in America" myth.
And don't underestimate the power of Love. Love changes all the rules.
Damn straight that this world needs Ian, as much as it needs you.

Anonymous said...

You asked if love loses this battle. I don't know for sure, but I don't think love ever loses....because it endures FOREVER. That means beyond this life. Sometimes we are so concerned with this life, that we forget the reality of heaven and continuing eternity there. Maybe love loses here, if you mean that hate/fear/pity are more evident. But the true reality is that love continues and continues, ever winning, ever strong, straight through to the next life -- the REAL life. Just some scattered thoughts.

A. Eaton said...

Tom, thank you for writing this. You have an amazing way with words and I whole heartedly agree with

"Yes, the world hates my son. But it desperately needs him."

I know for myself, that just seeing Ian and holding him brought me into the presence of God. There is no doubt that Jesus is in this little life.

Anonymous said...

Elbog: I like what you say: "Love changes all the rules." That made my day!

Brett said...

Here is one of my favorite clips of the Samples (Maybe my favorite band).

This World is for Everyone.

Kim Ayres said...

Great post Tom.

The world hates my daughter too. I knew that the moment she was born. In that precise instant I realised she had DS I held her so tightly and so close to me and I wanted to just tell the rest of the world to F*** right off. I wasn't going to expose her to that ignorant world of hatred and prejudice.

And yet, strangly enough, while the world may hate and fear my daughter for all the reasons you mention, individually people seem rather taken with her. She has quite a lot of friends at school. Adults take a bit of extra time to allow her to explain what she's thinking.

And we EXPECT everyone to treat her with as much respect as they would treat any child.

And they do.

We radiate out such a powerful Story of "it doesn't occur to us that anyone would be unpleasant to Meg" that no one is.

Don't underestimate the power of creating your own Narrative, Tom

Tom said...

Elbog: I see indifference as an offshoot of hate (passive hate, if you will) and denial is it's bedfellow. But I do know that Love trumps all, although only after passing through the refiner's fire. Thanks for the words.

Anon: No doubt Love rules the day, but this essay serves only to lay the groundwork toward understanding what Love faces day-to-day. Thanks.

A. Eaton: I emailed you. :)

Brett: Great song, man. I sat with "Sad World" for a bit tonight; seemed appropriate. Appreciate the heads up on the band.

Kim: A needed reminder, Kim. I've already noticed that people respond to Ian based on my demeanor.

I know that you don't think this way, but I hope that no one reads this post and hears me saying to lock the doors and hide from an evil world bent on destroying Ian. Not at all.

I'm just trying to lay the groundwork for some of my thoughts on the matter. I think I'm addressing everyone here.

I wholeheartedly agree that my response goes farther toward bridging the gulf between my son and the world than any abstract theory. (Again, just working out my thoughts here via your response.)

Tricia said...

Just a little ol' liberal here loving my daughter whom the world hates and fears.

Funny how much hate and fear exists here in these very comments as well.

Luckily though, too, we find love.

Great post, Tom.

Anonymous said...

Found your blog: You say 90% of all mothers who find out their child will be born with DS abort? Therefore, the world hates your son? Isn't that quite a giant leap and assumption? Maybe the problem is with those women. But it doesn't mean that all the world hates babies/children with DS. I have found a lot of love for these babies and children...a lot of people,in fact, most of the people I know, enjoy these children, really enjoy them, and learn from them. There is a lot of love in the world if we just look for it.
It's an interesting blog. Makes me think.

Tom said...

Tricia: In addition to the email I sent you, just wanted to say here that it sucks that some find it necessary to use others as scapegoats; I hope I'm not guilty of that too.

Peter: Yeah, I did use a broad generalization here, didn't I. No doubt there is a lot of good out there when you look for it.

That's why I like this blogging thing. It lets other people help keep me from flying off one way or another. Maybe I shouldn't have used the polarizing word "hate." I struggled with that, but then just threw it out there.

I still stand behind my assertion that most of us are scared of what is different than us, and so we avoid it or dislike it being close to us so that we are reminded of it. If it's different, that might mean that we are wrong and need to change, and who likes that?

I'm rambling. Thanks for writing and hope to chat more in the future.

Anonymous said...

Don't edit your comments and thoughts, like not using "hate," etc. Throw it all out there. We can take it. I'm damn tired of people sugar coating what they really want to say.
No sugar. No masks. Just naked truth.

Tom said...

Peter: I'm all for telling it like it is, man. Just trying not to leave a trail of destruction in my wake.

Summer said...

I just found your blog and was touched by your very real and powerful words. The world (aka society) is so obsessed with perfection that as a mass it fears and detests anything that might upset the precarious balance of supposed perfection it has created. If the definition of perfection was altered to include children with Down Syndrome then The World would adore your son. Within the great grand society though are millions of individuals, many of whom do not play by the rules. Each person sets their own definition for this perfection as well, and many refuse to use the one generalized to the entire world. You have never had a parent excited to have a child with Down Syndrome in their child's class. I am a teacher of a preschool class for children with special needs and I have three children enrolled in my class as peer models who have no delays and whose parents eagerly had them join our class for the equal benefit of every child. I will not accept inclusion peers when the parents have the attitude of offering their child up as charity. I can not change The World, but I can perhaps alter that definition of perfection one child and one set of parents at a time. If not, then I can stick my tongue out at it as I refuse to conform and proudly prepare my perfectly "imperfect" little ones to go out and defy The World.

Michelle said...

I guess I should also add a caveat...when I said Liberals, I didnt mean all liberals. I meant a certain one, who was under my skin in a BAD way...Peter Singer at Princeton. He makes me crazy. apologies to those who may have been offended.

Tom said...

Summer: Glad you found my blog; I look forward to checking out yours. This whole idea of perfection is one I'm trying to work through and find the words for. I appreciate your thoughts.

Michelle: I thought about writing about Peter Singer, about how he's influencing a whole generation of students to believe that killing babies with DS after they are born is an acceptable view. The guy has got too large of an audience, in my view.

Christina said...

Thanks for the link! I really enjoyed it!

Tough sometimes to be on teh other side of the hate. It was nice to have some time when you could 'hide' from it like you said. Jusdt wait and see, in one year I will be killing them with my smart a** comments ;-)

Thanks again

Christina (Prince Vince MOm)

Tom said...

Thanks Christina... Looking forward to reading your smartass comments in the months to come. :)