My Brother and Sister As They Truly Are
I always had to translate my little brother and sister’s words for my parents. Growing up with them, I learned their language much better than Mom and Dad. Their tongues which were too large for their mouthes and their mental retardation prevented them from speaking as well as other children their age. My name was “Duhn’thin” for years. My brother or sister would say something and a blank look would cover my parents’ faces. I’d chime in with what they had said, and life would go on.
Their language was unintelligible to outsiders. I learned this when some neighborhood kids mimicked what they heard my sister say. “Duh, duh, duh,” they taunted her. I loved her and it hurt to see her mocked, but I didn’t want to be dumb by association. I stood by and left my sister undefended.
Years later in high school, I had a chance to redeem myself. I stood outside the locker room when one of the short school buses pulled up. I was looking somewhere else when I heard one of the guys yell “Dog! Ugly!” I turned around to see that my sister was the target of this attack. She attended the same school as I did; she had been mainstreamed as they called it. Redemption would have to wait for another day. The situation stunned me into inaction. I was too ashamed of my sister to stand up and defend her.
To this day, when I hear people say offhandedly “that’s retarded” it feels like an attack on my brother and sister, but I don’t say anything. How do I explain without seeming too thin-skinned?
Even though I loved my brother and sister, I often wished that they weren’t retarded. I wished that they could have been normal. Mormonism holds out that hope. It teaches that mentally retarded children were especially valiant champions in God’s cause during our existence before we were born. As perfect innocents, they are assured of their salvation and exaltation in God’s Kingdom when they die.
As a corollary, I would someday meet my brother and sister without the false burden of mental retardation. I have daydreamed all my life about the day that I would meet them and be able to have a normal conversation. I imagined how they would look: normal at last. They wouldn’t make people feel uncomfortable anymore. They wouldn’t embarrass me anymore. I would be proud to be their brother.
Maybe you can understand why it is heartbreaking for me to give up that hope. I now realize that there is no immaculate soul hidden inside my siblings, untainted by retardation. When they die, no sparkling gem will ascend to heaven. The retardation isn’t the illusion. My little brother and sister are retarded.
Instead of loving my brother and sister as they truly are, I have been hoping to meet someone who doesn’t exist. I have been ashamed of their true selves. I will never be able to talk to them, except in our shared language.
Tags: belief, children, compassion, death, down syndrome, family, fear, guilt, hope, illusion, LDS, love, mental retardation, mind, Mormonism, Naturalism, religion, shame
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August 16, 2007 @ 1:36 pm
“Never” seems to be too strong a claim. It seems that those who say “never” generally turn out to be wrong, and those who say “certainly” generally turn out to have underestimated the difficulty.
August 17, 2007 @ 7:15 am
It’s long interested me that mental retardation does not seem to damage someone’s capacity for kindness or common decency. I could be wrong about that, because I don’t know a great deal about the subject,. but it nevertheless has been my strong impression that some of the mentally retarded people I’ve met were quite kind and decent folks.
August 17, 2007 @ 8:00 am
Lincoln,
I don’t put the probability of finding a cure for trisomy 21 during my lifetime very high. I could be wrong, I guess.
But this evades the essential question: if my brother’s and sister’s condition is reversed, does that reveal their true selves, or does it change who they are?
Paul,
In general that seems true. They are generally less malicious or scheming, but not always. And there are problems associated with having a child’s mind in an adult’s body. My primary experience is with my siblings, but I wouldn’t assume that a mentally retarded person is harmless simply because of that fact.
August 17, 2007 @ 8:19 am
A cure would change part of who they are, but you already deal with that every day — although generally to lesser magnitudes. Despite that, I suspect we’ll eventually be able to offer a sufficient continuity of identity while curing persons such as your siblings. In addition, I’m confident (but fallibly so, of course) that this will happen in your lifetime, assuming you do not die within the next thirty years. My reasoning is based on the continuation of the trend of exponential advance in information technology and its application to genetic therapies.
August 17, 2007 @ 10:29 am
The church has to have an answer for why people are the way they are, and retarded people are believed to be more valiant in the pre-existence so that they will be treated better. I’m not sure that it helps. As you say, you were thinking of them as how they might be after they/you die. The problem is that they are the way they are now and we aren’t treating them correctly in the present.
Its hard to think back and see how we should have done things better/differently, but regrets can be used to better ourselves and be better people from then on.
/paranoidfr33k
August 18, 2007 @ 10:42 am
Lincoln,
I puzzle over the question of identity. Personal identity, you seem to agree, is largely an illusion. I’m not sure what part of my siblings would need to be preserved in order to preserve their identity. Personality? Memory? Body? Life history? What makes me the same individual as the baby whose diapers my mother changed?
paranoidfr33k,
Part of my problem with the Mormon view of mental retardation is that it subtly says that a mentally retarded person isn’t acceptable as they are. Mormonism consoles parents by saying that their children really are normal, it just doesn’t look that way to us. A Mormon parent finds comfort in thinking that mental retardation cloaks their true selves.
If they are wrong and there is no other, truer self and mental retardation is part of the child’s true self, then Mormon parents (and family) hope for a day when their children will be destroyed.
August 18, 2007 @ 12:25 pm
I wouldn’t say that identity is an illusion. Identity is what it is. We experience it. That’s its existence. Many parts play into our sense of identity. As we become better acquainted with ourselves and others, and better acquainted with our anatomies and environments, we’ll better understand how to preserve and enhance our experience of identity. Along the way, if not already, we’ll realize that change and memory are both part of identity.
Here are some thoughts from Brigham Young on the importance of preserving identity . . .
This is the greatest gift that can be conferred on intelligent beings, to live forever and never be destroyed (DBY, 96).
It is written that the greatest gift God can bestow upon man is the gift of eternal life. The greatest attainment that we can reach is to preserve our identity to an eternal duration in the midst of the heavenly hosts. We have the words of eternal life given to us through the Gospel, which, if we obey, will secure unto us that precious gift (DBY, 96).
The intelligence that is in me to cease to exist is a horrid thought; it is past enduring. This intelligence must exist; it must dwell somewhere. If I take the right course and preserve it in its organization, I will preserve to myself eternal life (DBY, 96).
I think Brigham was headed in the right direction. Identity does appear to be a matter of organization. You are matter and energy, organized according to a pattern that is unique to you (call it your “spirit”). Even long after you die it may be that the cascading effects of your unique pattern remain emprinted in time and space, and can be analyzed and reconstructed to restore the power of embodiment to your pattern (call it the “resurrection”).
cybr said,
August 18, 2007 @ 9:30 pm
First, I’ve heard this as doctrine from several people. I even have a cousin with Down syndrome who we love very much. And, he seems to have knacks for special projects at his work. However, I personally have not been able to find any specific scriptural or doctrinal reference for this false doctrine.
Second (call me heartless), back to my previous discussion for eugenics…
August 20, 2007 @ 8:39 am
Lincoln,
The more I try to define identity, the more slippery the concept becomes. There comes a point when my thoughts become frustrated and I begin to believe that I am an illusion. Or at least my model of myself doesn’t reflect the reality of it.
I’m also not entirely convinced that living forever is all that it’s advertised to be. I really enjoyed The Infinite Book: A Short Guide to the Boundless, Timeless and Endless. An infinite life looks very different than the life we live now, and not always in good ways. I hope for a greatly extended, healthy life, but I’m not sold on eternal life yet.
cybr,
This highlights a problem in the LDS church: where can I find official doctrine? In the strictest sense, only the Standard Works are official doctrine with a few additional materials made official by the consensus of the First Presidency and Quorum of the Twelve. In the broadest sense, it is whatever the Spirit inspires a person to say. Most people follow a set of doctrine somewhere between those two extremes.
I think if you surveyed the church population in the western U.S., almost all people would share this particular belief about the mentally retarded. That’s official enough for me to call it a Mormon doctrine. I’m not particularly concerned what the Corporation of the President of the Church of Jesus Christ of Latter-day Saints chooses to endorse. Church membership doesn’t restrict itself to this small subset.
For example, Creationism isn’t an official doctrine of the LDS church. Many of the people I know would be shocked to know this.
August 20, 2007 @ 10:04 am
I forgot to address the eugenics. There seems to be a fine line between eugenics and legitimate medicine. The difference may be as ill defined as the difference between wise and foolish use of our genetic knowledge. We obviously want to overcome genetic disease, but what is defined as disease? Abnormally low IQ could easily be considered a disability/disease. Should we therefore seek to correct it?
cybr said,
August 21, 2007 @ 10:59 am
I would have to blame society. The society we live in and have lived in for many millennium have propagated the decline of the evolution of our species. We encourage the propagation of a defunct species. Pharmaceutical companies make more money by providing remedies instead of cures. No new major advancements in medicine have been accomplished in the past seventy years. We are creating foods that are not for the benefit of our health. And, we enjoy it. (Mmmmm… Donuts) Our species has seem to cease to evolve physically. If anything, this could lead to a devolution.
August 21, 2007 @ 12:00 pm
For several millenia, technology has been affecting human evolution more than has biology, and the degree to which technology is affecting human evolution is increasing exponentially.
From my perspective, our respect and care for disabled persons has positively affected our evolution, pushing our technologies to the point that they will provide not only cures, but also enhancements.
Although I am in favor of human enhancement, I am not in favor of eugenics. Eugenics, as I use the word, almost exclusively empowers the community to make enhancement decisions, whereas I believe individuals should have broad freedoms in this area — although there should still be balance with communal interests.
August 22, 2007 @ 10:21 am
I don’t know if evolution has stopped, just that some of the forces shaping it have changed. Sexual selection is still in full play, for example, but death by small pox is not. We human beings seem to control our own evolutionary environment to a degree unseen in other species. It’s an interesting feedback loop.
I just worry that we’re not smart enough to really handle the power of being able to affect our own genome.