I watched a program on Hitler the other night. The countless lives that were ruined by a fanatical maniac with no regard for the humanism of others is so disturbing — the way one person's into,era vie for the "different" influenced so many to the point that those in his regime abandoned their ability to think for themselves — brainwashing so many — creating killing robots on a mission to eradicate the “different."
On the same evening, I read a brilliant post. The Case for Conserving Disability, by Mark Leach. In the post, he sites a piece written by Rosemarie Garland-Thomson.
I couldn't help but think about how different my life would have been if it hadn't been blessed with something "different." How the association with "differentness" Down syndrome has hopefully made me a better person, and how it has made me question (frequently), what disabled really is. And finally, how I've often wondered who gets to decide what disability means. Does it mean physically? Mentally? Emotionally? Spiritually?
The author of this post makes an excellent case for disability. Anyone who loves a person with a disability knows how it demands all of you (meaning,the care-giver). No one says it is easy. But this post raises some good points. Here are a few things that jumped out at me...
1. "It is well-established that the non-disabled have a much harsher view of a life with disability than those actually living with the disability."
Isn't that the truth? I have yet to meet a cynical or sarcastic person with Down syndrome. That is not to say they don't get mad. To the contrary, Charley and I are FIGHTING this morning. Even so, I know from experience, that our disagreement will be short-lived. He is, by nature, a fighter, but even more so, he is a forgiver. His love is stronger than any fight or disagreement we can create. Here’s another newsflash: In this time of political bickering, you’d never find him slinging mud at anyone. I know few certain Presidential candidates who could learn a few things from my supposedly “disabled” son.
2. In her article, Garland-Thomson makes this point; “I began to understand since my daughter’s birth: we are all disabled in one way or another, and will “evolve into disability. Our bodies need care; we need assistance to live; we are fragile, limited and pliable in the face of life itself. Disability is thus inherent in our being. What we call disability is perhaps the essential characteristic of being human.”
I’m glad she brought that up. Isn’t this the gift of the disabled? to show us how disabled we all are? That in some way, we are all broken?
3. This point is demonstrated by Garland-Thomson’s reference to a wonderful on-line piece written by Chris Gabbard about his profoundly disabled son August (who recently passed away). “Gabbard observes that many ‘well-meaning people would like to put an end to August’s suffering, but they do not stop to consider whether he actually is suffering.” Gabbard admits caring for his son likely limited his professional career, but it expanded his understanding and experience of the world. “Ultimately, August’s gift to Gabbard … is what any human relationship provides to any of us: the ‘opportunity to profoundly love another human being.'”
Again, I’m glad she states what many of us parents of Special Needs children (adult or child), are already thinking.
What power these human beings have. The ability to show us what love really is. The power to call us out of ourselves. Out of our population of one, where we are prisoners of our own egos. It’s a mighty lonely place, when it’s just me and my ego. Not a whole lot going on there but me. And more me. Living with Charley has taught me that life is not about me. It’s meant to have purpose, outside of the me-oriented.
Truly, living with a person who is considered “disabled” is our ticket out of the depths of ourselves. Some of us are thrown into it, some are called to it by choice. Either way, it’s an opportunity. To even entertain the notion that society would be better off without these tender souls is unthinkable.
Brad (my husband) and I have been painfully aware of the extra demands of having a child with Down syndrome. There are those who have judged us. The things we do, the things we don't do. The ways we don't always get it right. Not by everyone, you understand. We don't feel this big conspiracy. It's simply a case of expectations and whether or not we have been able to live up to those expectations. So has it held Brad back? Yes. Has he been criticized? YES. Are we sorry we adopted a child with a disability? ABSOLUTELY NOT. Would we have it any other way? NO.
Yes, there is a “Case for Conserving Disability.” If Mark Leach’s article didn’t convince you, and I’m certain that it does, perhaps you might want to read Essay: Arguing Eugenics, by Mardra Sikora.
Grounded in research and personal experience, Mardra Sikora's "Arguing Eugenics" extends beyond the subject of genetic testing (for the purpose creating a society free from the burden of Down syndrome) and into the heart of a world in danger of eliminating much more than an extra chromosome. As a writer and mother of a young adult with Down syndrome myself, I applaud Sikora's ability to lay out the facts while making the reader think with their hearts through the logic of her son Marcus.
"Arguing Eugenics" takes a subject often written about in medical and technical terms, and fine tunes the lens to so those unfamiliar with Down syndrome can see clearly how whole communities would suffer the consequences of eliminating often the most compassionate among us. If I were to sum it up, I would wager to say that a world without Down syndrome is a world in danger of reducing itself to breathing in and out. While Sikora does not glamorize naïveté regarding special needs individuals, be it children with cancer or those who are born with spinal bifida, rather, she is a realist who sees the value in every human life, while charging the rest of us to do the same. What gives anyone the right to decide who has value and who does not? What gives anyone the right to decide that another human being is a burden? I agree with Sikora one-hundred percent, no one has the right to set that criteria.
Our lives began the moment Charley came into our home. I shudder to think of a life without Charley in it.
Can you imagine a life without this?
It's been a good life. A worthwhile journey. As my husband says, "I made the decision to love a special needs child."
And so did I.
If that makes us less, then so be it. Truth is, disability is a gift. As the article says, we are all destined to disability. It's the circle of life. One day we will all need care. But we all have ability to change someone's life, just by being in it.
Charley has Down syndrome. He is not broken. And neither are we. In more ways than I could possibly say, we have been healed by that 21st Chromosome known as Down syndrome.
Perhaps we should be less concerned with what is "different," and more concerned with our calling.
As for me, I have two working knees. They don't always work as if they were still 25, but I hope I use them every day to thank God for the “disability" I’ve been blessed with.
And I hope that you do too.
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Sherry Palmer is the Author of Life With Charley: A Memoir of Down Syndrome Adoption
Please visit Charley on Facebook at: Life With Charley - And Down Syndrome
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