Silvi had her first dental checkup this morning. When she came home she was beaming. "No cavities! I got an apple and stickers and a toothbrush and my own dental floss. They put a long straw in my mouth with water in it!"
The last time I went to the dentist it was for a root canal. The dentist told me that I might feel some "pressure" when he struck the nerve. I think my last post on the Pollyanna syndrome caused some "pressure" for a few people.
I got some emails and a phone call. No one got angry, but a few were a little stern. In a good way. The kind of sternness that is forged by worry and love and battling for the right that their child be treated with equal respect.
Thank you for your emails and for calling. Really.
I've been pouting a bit these last few days. I'm not proud of that, especially since I'm supposed to be all grown up now that I'm turning 40 and all. I'm not completely sure why I've been extra sensitive to some of the comments. Part of it is understandable: These last five months have not been easy.
But I think another and more powerful emotion that has been pushed to the foreground is how isolating and lonely our individual journeys as parents raising children with disabilities can be. Sure, we all share the commonality of raising a loved one with Down syndrome, but there are still so many variables that make each experience both the same and extremely unique in the same breath. Some parents have almost no health problems to cope with while others barely make it through the night without worrying if their son or daughter will be there in the morning. Some children have amazing vocabularies while other are struggling just to make a few "simple" signs.
Maybe it's the end of my first naiveté (for surely there are more to come.)
Annie (my wife) enjoys and appreciates the short video highlights of the accomplishments of people with Down syndrome. When she caught the segment about Karen Gaffney's swim across Lake Tahoe, she emailed the link to me at work. Her response is most likely the more "loving" one, which is the standard I aspire to. Mine was to be skeptical.
I was skeptical of the television producers for "exploiting" the story because they know that "feel-good stories" bring good ratings. This view, no doubt, is fueled by my day-to-day experiences working in the business. I was also skeptical that Gaffney's story would change people's opinions of people with Down syndrome. I felt this way for the following reasons.
It seems like the only stories that "they" (the world) deem fit to air about people with Down syndrome is when they accomplish something that people without Down syndrome can also accomplish. And to me this is key: The world says, "People with Down syndrome are valuable because of their accomplishments."
When I watch these stories about the accomplishments of people with disabilities, I keep thinking, "Isn't highlighting these kinds of accomplishments only perpetuating all the misconceptions and reasons why I am fighting for the right for my son to exist? What if Ian doesn't sink a three-pointer or paint a pretty painting? What if - like 70% of people with Down syndrome - he never gets a job or lives on his own or wins a race? Is his life not valuable, meaningful and even beautiful?"
But here's where I really want to be heard. Celebrate these accomplishments.
"But you just said...."
If Ian ever makes a goal in soccer or wins a swimming medal or paints a pretty picture, sure as hell you're going to hear about it - ad nauseam. I'll throw a big party and everyone is invited. And if I was standing on the shores of Lake Tahoe when Karen struggled ashore, I would be right there with everyone else, clapping and cheering her on.
When I lived in Seattle, working toward a Master's degree that would never be, one of the buzz words (or phrases) was "living in tension" or "living with contradiction." When we are living in tension, we can celebrate the accomplishments of those with disabilities and appreciate their worth despite their accomplishments. The problem with the "happy ending" 3-minute story is that these people with disabilities are deemed worthy because of their accomplishments.
When 80 - 90% of pregnancies are ended by a diagnosis of Down syndrome, we need to be challenging these prevailing presuppositions that the only stories worth telling are about people who accomplish things. Because the unspoken message is that the only people worth living are those who accomplish things. My son may never "accomplish" something that the world deems worthy. But every day he teaches me about sacrifice and responsibility and joy.
And about love.
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16 comments:
I missed your original post until today. I really do understand the frame of mind from which you wrote it. And I have to say that I like Kim Ayer's response, too.
I like your follow-up, this post, as well. I think the same things when I watch the spots on t.v. Part of me loves the story, gets teary over it all, and part of me wonders why it's such a big deal anyway. I resolve the confusion by concluding that, well, at least the spot is educating the public about what is possible for children and adults society generally deems imperfect.
I think I'll dwell on your thoughts a little longer to see if I can come up with some original thoughts of my own related to these ideas.
Sometimes your posts move me to think and not to say. Sometimes I just don't have words. But I want you to know that I am reading and hearing and thinking, even if I a not responding.
I hope someday you get the pleasure of hearing Karen talk in person. That young lady is INSPIRING! She is so moving, and so sure of herself.
I'm a short time "eavesdropper," first time commenter...first of all I want to preface this with the fact that I have no personal connection to ds whatsoever...I don't live it every day like so many of you do, so therefore my perspective is quite different - I am sure of this fact. But I wanted to throw this idea out, I think you might be struggling with an issue that may be much more deeper and yet much more "basic" - the question of where does the value of life come from anyway?
My husband does not care for those feel good clips as well, he also thinks they can be rather exploitive but I think he is basically uncomfortable with them putting such an emphasis on the wrong thing. We are all - as human beings, across the board - judged by what we do. That's the first question people ask when they meet - "and what do you do?"
I think for me this is where my faith comes in to help me sort through the junk - my worth, everyone's worth comes from God - we are valuable because we are created in His image and nothing we can do will add to our value..."our righteous acts are like filthy rags" "while we were still sinners, Christ died for us" we were worth everything to Him because we are His.
Anyway, that's my two cents (or six or eight) it may not at all help with the train of thought you are wrestling with, but its what has come to my mind in reading your latest posts.
Amen!
I would submit that the "unspoken" message of our society that people who accomplish are those that matter is in fact, spoken. LOUDLY. I wish it were not so.
What a great blog, Tom. I've been meaning to take a look since I got your comment on mine--which made my day, BTW. I can't imagine how you manage to blog so regularly. I have to plan it for days. But I think I'll do Julianna's likes & dislikes over at kokopeli74 if you want to come take a look.
Since we're up anyway. :/
Kate Basi
Sorry, let me add another comment.
Some random thoughts.
It's important to accept that people with DS do have something knitted into the fabric of their being that makes it difficult for them to achieve the things that we expect from "normal" (for lack of a better word) people. There's nothing wrong with acknowledging that, and, by extension, broadcasting it--loudly--when Karen swims across Lake Tahoe. I mean, what person WITHOUT DS can swim across Lake Tahoe--really????
(Also--we heard Karen speak in Kansas City in August, and she is an outspoken self-advocate. She was talking about this swim then. I would imagine she went after the publicity--I don't think there was any exploitation involved.)
In our fallen world, we are never going to manage to change everyone's hearts about people with DS (or other disabilities) by talking about it, reasoning with people, trying to teach. Only person to person contact can do that. That's why I'm so grateful that Julianna has the opportunity to touch so many people--young people. I work at a K-8 Catholic school on a very part-time basis and the kids can't stay away from her. She's like a magnet--to boys and girls. Each of those boys and girls will remember, as they reach adulthood, how sweet Julianna was at age 10 or 11 or 12 months, and they will, hopefully, remember that a person with Down syndroms is not to be feared, but to be adored, just like every other human being. "We're more alike than different" is a great slogan.
You want Ian to be accepted for who he is rather than what he's achieved. You love him unconditionally.
However, as he achieves things - his first words, first steps, first time he writes his name, first time he has a dry night, first time gets 10/10 on his spelling test etc, you will be an immensely proud parent and want to let the rest of the world know how proud you are.
And if and when he achieves things that other people recognise - is in a school play, swims a lake or conquers Everest, then you will be delighted that the rest of the world was wrong to underestimate him.
But I still maintain that this is parenting plain and simple. Insert Silvi instead of Ian into the above blurb and it equally holds true.
His DS is neither something that needs to be celebrated or bemoaned. He is who he is.
He may never be a rocket scientist, but then he probably won't suffer being an over-introspective depressive philosopher like ... er, me. Which surely has to be a good thing
I can assure you that karen doesn't believe herself to be exploited, in any way. She might just chew you out for thinking so, lol. If you think about it, the fact that you havent gotten to the point where you see these "feel good" stories as the stories of the people who LIVE them versus the stories of the people who love them, might just make your own feelings a bit...prejudicial? Which is fine, you arent very far along this journey yet.
But someday, Ian is going to tell you he wants to play basketball, or paint, or play baseball with his buddies, and you are going to have to consider all of what COULD happen, who might think badly of you for "exploiting your son" versus what IAN wants. And you will do what Ian wants, and you will find yourself moved by his desire to live a normal life, and having DS will begin to be unimportant. Because he (and you) will be too busy living. Does that make sense?
I made a video last summer of Ciarra playing baseball. She clocked a BIG one, it sailed over the other teams heads, and she came rounding off home plate with a big smile on her face. That was cool, and I loved every minute of it and imagined life couldnt be better. Until I turned my camera towards the dugout and saw her little teammates lined up outside the door, standing in line with big grins on their faces, hands raised to give her high fives. She wasnt looking at the camera when she high fived them back, she was just living, being a part of the team, being a kid. I am glad I got that on film, I am touched beyond words that SHE made her own place in the world and showed her own worth to her teammates. I think that is what people need to see, that desire, that will to just LIVE and be accepted and loved. And I know at least one other family who saw it and will take a gamble this summer and let their son play ball. And maybe he will have great experiences, maybe he wont. But at least he gets the chance to know what it is like to be a kid. By the way, my oldest son who is a bona fide superstar in football REALLY struggles in baseball. He has a different dream, and I have my camera in hand to document that, too.
Just as there really is no such thing as an average kid with DS, there is no such thing as an average parent of a kid with DS. You are other, Tom. You have a perspective (ever-changing) that no one else can quite capture.
I'm involved in a care ministry at a large church and we have a lot of support groups that meet there once a week for all kinds of issues. People think that the big value of a support group is that FINALLY you will find people there that understand you and share your experience. That's true. But another part of the value of these groups is that you will discover that there is not just one way to be if you are "an addict" or "depressed" or "an abuse survivor" or "whatever". These categories are just a convenient short hand to help people find one another, but they actually say very little about the unique people who have the task of finding themselves and telling their stories.
I appreciate that this is a community that feels free to speak and hear what happens to be bumping around inside a mind and heart. That's valuable. You don't have to come to a consensus. You don't have to all be the same any more than your children do. I value what you and your friends are speaking into this space. Thanks for letting me listen in.
Anne: I really thought Kim got the essence of what I said and added to it well. And I look forward to reading your own thoughts on this one day.
Carole: Glad you let me know... I was worried you were out renting a wood chipper or something. :) But really, glad you dropped a note.
Michelle: I would jump at the chance.
Anonymous: First, glad you responded to my thoughts. Welcome to my blog.
I once wrote a post on about being an "explicit" vs. and "implicit" believer. (I know I am called to be both, to certain degrees, but gravitate toward the latter.)
The belief that all people are created in His image informs all that I write. I just choose not to be explicit in stating it because I feel that most people, myself included, have turned such statements into a cliche, and I want to help people work past the cliches. (Not insinuating that you are using it as a cliche; hope you get where I'm coming from and don't feel patronized.)
Thanks for being "explicit." I need that.
Steve: Thanks..
Elsie: Me too.
Kate: I'll pop over; thanks for stopping in.
I can't swim from one end of my bathtub to the other, let alone across a lake. And I would love to hear Karen tell about her experiences.
I think you hit on one of the most important issues that I haven't addressed yet; the one to one contact and how that changes people's perceptions. I agree with you wholeheartedly that this is the primary way to changes people's attitudes toward children like my son.
Thanks so much for reminding me.
Kim: I really do admire the way you don't make a big fuss about Meg's ds. I try hard to imitate you, with little success. I just want to talk about it, to get it all out there. I feel if I don't talk about it then it is the elephant in the room.
I agree, and am thankful, for everything you said here.
I'm just not there yet.
Michelle: I can't wait for the day when Ian can advocate for himself. I often feel like I've got the weight of the world on my shoulders to pave a way for him.
I'll try not to feel a bit patronized (the newbie thing, which I am, but hate for others to point that out.) :) But the "prejudiced" thing was kind of an ouch moment for me. I sure hope I'm not.
I don't think it's prejudicial to point out HOW a story is portrayed by the media. I'm not questioning whether it was right for us to celebrate Karen swimming across the lake, something I couldn't do, rather, I was asking WHY is this the only type of story the rest of the world tends to highlight when focusing on ds. (Other than all the health problems) The "Rocky" moment. Or the "Karate Kid" moment.
But I definitely see your point, and you will definitely see a lot of Ian's "accomplishments" on my blog in the future. Thanks for challenging me. :)
Terri: More than listening in, your voice helps me from being too inbred. If you know what I mean.
I think what you said about not having to come to a consensus is so right, and maybe I'm pushing too hard to find one that will never exist. Thanks for helping chill just a bit... I need that.
ok, prejudiced was the wrong word...imbalanced, maybe? Right now, you see DS through the eyes of pain and fear. YOUR eyes. It wont be long till you see it through IAN'S eyes, and it will balance out. As for being the newbie, there is something almost...tragic yet heroic?...about those earliest days. We all had them, they were different for each of us. They defined us as parents, would we stay stuck or would we let love lead us out? You are letting love lead you out, asking good questions. Someday you will treasure this time, and recall the newbie period as life-altering, but in a GOOD way. You're doing just fine.
I am not patronized at all, you are very right in saying that speaking in "church-y" type terms can very much become cliche, and I appreciate conversation that goes deeper. I hope that I didn't come across as putting a cutesy little band-aid on a very large struggle.
Again, I know that I could never totally understand your view because I am not living ds as your family is - I guess I was wanting to relay to you the fact that I can see this as somewhat of a universal struggle at a very basic level - we all wish to be accepted without the baggage of accomplishments and comparisons. Every active believer is aware that we are created in His image - but I also know personally how very easy it is to forget this when living day to day - because it is not reinforced in the society around us.
Michelle: I like "imbalanced" better. :)
I kind of hit on some of the issues here in my latest response on the previous post (Pollyanna syndrome). Thanks again for letting me fumble my way through this in public. :)
Anonymous: You mean a cutesy band-aid with the Flintstones on it? :)
And you really hit on something there when you say this is a universal issue, because I think it is too. Appreciate you helping me to step back for a minute and see a bigger picture.
it was a care bear band-aid :-)
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