Independence, Money, and Human Worth
Posted: April 26, 2013 Filed under: Down syndrome, kids, the future | Tags: blogging, disability, Down syndrome, Ethan Saylor, Independent living 16 CommentsThe first question of the Liebster Award is: Why did you start to blog?
Here’s why I started to blog…
All this excitement over little ol’ me? Pshaw.
My very first reason I started this blog is that I didn’t want to keep talking about LP’s Down syndrome over and over. It was exhausting to rehash the details of it all, to explain what Ds was, even.
More and more, however, the reason I blog is that I think our society needs a priority reordering. Having a child labeled with disability has forced me to reconsider the very meaning of human value. I say forced, because I honestly admit that it was by force. I don’t think that if LP did not have Ds, I would have come to this understanding on my own. Who knows, maybe I would have. Other people have come to this realization earlier and easier than I have. LP sure did give me a kick in the ass though.
This has come into stark relief during the aftermath of Ethan Saylor’s death, but I have been long realizing that our collective estimation of a person’s value is too intimately tied up in monetary value. When we found out that our child had Ds, for a few days I found myself wanting to find every single person with Ds who was able to live independently. Hopefully, they had jobs. Maybe it wasn’t enough to solely support them, but it was something. Then I found myself wanting desperately for all of our friends and family to understand that LP may be one of those lucky individuals.
But wait. Why did this feel so awful? LP may not be one of those individuals. Was I to spend my life hoping that my kid would be something for which he may not be destined? Would it be fair to put such expectations on any of my other children? Why is independence so valuable? Money. It is a sad fact that in our society, individuals who can’t live independently, earn a living, are not seen as valuable. Money. Our current culture values skills that can be monetized. Art, knowledge, writing, labor, all must be valued by money. It then follows that without a skill that can be monetized, then one is a burden by drawing on society’s services that could be better placed elsewhere.
Society, I say to you, this is screwed up. My child is not defective because he might not be able to fit into society’s current monetary culture. Our country’s wealth disparity is sickening; the top 1% of Americans enjoyed 81% of our country’s gain in wealth since 2009. Americans lose half their food to waste. As of 2005, Americans constituted 5% of the world’s people, yet we took up 24% of the world’s resources. I would actually argue that our obsession with independence is actually contributing to this current state of affairs. I look down our street, and I see a row of households, all independent, all separate. Each one of us has one, two cars. Each one of us has a vacuum cleaner, a stereo, a lawn mower, the list goes on and on. The resources required for us all to live independent from one another is staggering. I am not absolving myself of this, but I’m questioning why it must be so. Do we all need to live on communes and give up every ounce of our privacy? I’m not saying that. I’m saying that we could do a lot better though, and perhaps part of that is being willing to reconsider our collective values and their effects on our ability to live on this earth together.
Perhaps if we were more willing to lean on each other and live collectively, we would consume less. Perhaps if we consumed less, we would have more to give. Perhaps, if we had more to give, we would be more willing to open our hearts to individuals of all differences. Perhaps, if we had more to give, we could accept more. Perhaps, the world could accept my kid as valuable just the way he is.
So why did I blog? Why do I blog? See the above picture.
Kimchi Latkes 
It’s funny that you mention our crazy society’s obsession with stuff. When I was a kid, we lived in a neighborhood for a number of years where we borrowed each other’s things–vacuum, lawn mower, weed whacker, tool kit, even washer and dryer. I remember running laundry around the neighborhood for people nearby who didn’t have a washer and dryer like we did. I didn’t buy a vacuum cleaner until I moved away from home after college because we had always borrowed one from the neighbors.
When Owen was a baby, I used to worry all the time about him living independently because I thought that was what was required of him. But lately, I’ve been thinking more about him being with us–I don’t want him to leave! I have a feeling he’s going to be like, Mom, I’ve got ladies to see and a social life to live, you’re cramping my style. But if I can find a home with a small apartment for him, he’s staying with me! :)
See, I love that vision of community. And those are such small ways we can be connected to each other in every day life.
t’s funny that you mention our crazy society’s obsession with stuff. When I was a kid, we lived in a neighborhood for a number of years where we borrowed each other’s things–vacuum, lawn mower, weed whacker, tool kit, even washer and dryer. I remember running laundry around the neighborhood for people nearby who didn’t have a washer and dryer like we did. I didn’t buy a vacuum cleaner until I moved away from home after college because we had always borrowed one from the neighbors.
When Owen was a baby, I used to worry all the time about him living independently because I thought that was what was required of him. But lately, I’ve been thinking more about him being with us–I don’t want him to leave! I have a feeling he’s going to be like, Mom, I’ve got ladies to see and a social life to live, you’re cramping my style. But if I can find a home with a small apartment for him, he’s staying with me! :)
I see it even in the Down syndrome parenting community – for many parents, all the therapy, etc. that they are investing in their kids is in large part working towards the goal of independence. I have mixed feelings about it. Would it be nice for Finn to be independent someday? I suppose on some level it would. But I think it’s unlikely. I’m really okay with it. My visions of Michael’s and my golden years include an adult Finn. What I worry about the most is who will take him on when we are no longer able.
I know I wonder about that as well. But I also figure, I have no idea what the family would look like at that point, so I try not to go too far in my head. But it slips in there anyways.
I have mixed thoughts about kids with Down Syndrome being able to live independently and take care of themselves when they grow up. Sure, there are many programs for them so they can hopefully get a job and maybe be a janitor or a cashier. Some may be able to live by themselves but they need family close by.
I’m not sure whether we need to determine whether all people with Ds should live independently or not. I think the greater point is that every individual will be different, and it shouldn’t matter in the end. I would also say that many, many people get a good deal of parental support once they have moved out, Ds or not. I still get a lot of help from my parents, but no one questions my ability to live the way I do.
“I’m not sure whether we need to determine whether all people with Ds should live independently or not. I think the greater point is that every individual will be different, and it shouldn’t matter in the end.” My thoughts exactly.l
What an adorable picture. Don’t assume he won’t be accepted just the way he is. You’re anticipating problems that may not occur. I have a child who doesn’t have DS, and who hasn’t had an entirely independent adulthood. We love her and just go with it.
AK I hate that it is so, but we have already experienced lack of acceptance. And unfortunately our country has yet to even accept that those with disability are even discriminated against. I’m sad to say, it is just not a matter of loving him and hoping for the best. We have already seen very clearly that we will have to fight for it.
A closely related fiction is that anybody is truly independent, even accounting for ability to hold down a conventional job, having a washer/dryer, etc. Do you own your own company? Even if you do, did you build the roads on which your goods are transported? Whatever the case may be. The American ideal of rugged independence is a complete fallacy, at least in the modern era.
Exactly, husband. Exactly.
Love the pic! I’ve been thinking about this a lot lately. Sure I want Camden to be one of the few who are independent. Is it likely? Probably not…but maybe. If not, that’s okay. My biggest fear is him not being accepted because of society’s stereotypical views of disability. I want to change people’s perceptions and minds.
Change perceptions and minds. Yes. We have to push the dialogue; no one will do it for us. Speak on!
Enjoyed this blog very much,really made me think. It is such a hard line between wanting the most for your child and accepting the disability. What I have really learned is that I knew so little about disabilities in general and that is what i hope Treyton does with his life like only he can, get rid of the stereotypes! LP is absolutely adorable! Blog on sister, love your writing!
Thank you, Leigh Ann! I hope both our kids are given all the opportunities they want, but also to turn down opportunities that aren’t right for them, just like anyone else. That’s the thing for me. Choice. LP and Treyton deserve the dignity of choice, and acceptance either way.