And Another Thing…

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Just like everybody else

My career path, if it can be said in any way to actually resemble a path, has been a strange one, at least among many of my peers. When I left youth ministry at the age of 29, I more or less backed into the human services field. With some applicable experience but little in the way of relevant credentials, I found myself working at a home for at-risk youth (the less said about this experience, the better). When they ran out of money and could no longer pay us regularly, I went to work for a community mental health agency as a counselor/case manager at a group home for six adults with mental illness. I learned a great deal during that time and that experience put me into a position to take a government job as a manager for a 5-bed group home for adult women with mental retardation (MR). I was there for two years and would have stayed longer if I hadn’t gone back to school.

I have thought quite a bit about the experience of running that group home since reading Michael Gerson’s op-ed piece in the Washington Post about children born with Down Syndrome yesterday morning.  Gerson rightly points out that 90% of babies are aborted that receive a prenatal diagnosis of Down Syndrome (DS), spina bifida, and other conditions that will affect function in life.

 90%. Think about that. Such a high figure indicates that the choice to terminate is not limited to any demographic or income level. Caucasian or minority, poor or rich, conservative or liberal, religious or other; the vast majority of these pregnancies are ended once the diagnosis is received.

Gerson is a conservative and has never made any bones about that. He makes reference to Sarah Palin and her decision to bring her 4 month-old son Trig to term despite learning that Trig had DS. Not surprisingly, the comments section of the piece concentrates on the political implications; with comments ranging from the profound to the inane to the ignorant to the cruel. For our purposes, let’s consider those that fall into the last three designations. For example:

“Trig: n. 1. A political prop often used by the republican Christian radical right. The governor used a trig to deflect scrutiny of the Christian theocratic aspirations to raise the Joel army and start the final crusade (third wave) cleans the world of all other religions.”

__________

“Is it fair to the children who would be born with Down Syndrome to let them suffer through life? Should parents be required to sacrifice their lives and careers in order to adjust to the increased demands of taking care of such a child?”

 __________

“‘smashed the chromosomal barrier’

Yup. Yup.

Mo’ betta’ mutations.

That’s what we need.”

__________

“Thanks a pantload for your cheery speech on the rights of Down fetuses. I care just a little more about gay rights, safe and legal abortion, smashing racism and the lives of the half million Iraqis who have been murdered by the US for imperialist purposes.”

To his credit, Andrew Sullivan (by no means a Palin supporter) offers a more fair and humanistic view:

“At least we know this for sure: she went through the psychological, emotional and spiritual test of eight months of pregnancy and a painful, difficult, endless labor for a cause she believes in.

Trig represents in one simple, indelible image one mother’s decision not to do the expedient thing.”

What bothers me the most about the comments on the article is that most of them are made in the abstract; how many of these commenters have a family member with DS or another form of MR or even know a person with such a disability? The second-most bothersome thing to me is that the issue is viewed in political overtones. Are your lives and mine political issues? If not, then neither should the life of a person with MR be a political issue.

This is indicative of the paternalism, indifference, and hostility that our society has historically shown towards the disabled. The first school for special needs children was named “The Massachusetts School for Idiotic Children and Youth.” Of course, the designation of “idiotic” at the time was very broad – it included the deaf, the mute, and the physically disabled in addition to those with cognitive disabilities. Furthermore, the disabled were often looked upon as morally flawed.  Havelock Ellis, a well-known writer in his time on issues of human rights, once referred to the “feebleminded” as being incapable of “resisting their own impulses or the solicitations of others” and the state of feeblemindedness as “an evil that is unmitigated.” 

An effort to “solve the problem” of disability that became widely used in the twentieth century was forced sterilization.  One model law called for the sterilization of persons with mental retardation or mental illness, recidivist criminals, persons with epilepsy, substance abusers, persons with infectious diseases, the blind and the deaf, the physically incapacitated (due to birth or illness), and those dependent upon the largesse of society, such as orphans or the homeless.  Mandatory sterilization cases, although decreased in number, were still appearing on court dockets as late as the early 1990’s.

Today, most of us are appalled at such treatment, and rightly so. But when a human life is reduced to a cost-benefit analysis, are we doing that much better? Who are we to determine the worth of somebody else’s life? How do we know that a child with DS or another form of MR is destined for a life of misery?

I am not claiming that my job experience makes me an expert on this subject. Nor do I wish to trivialize the added struggles and difficulty that go into being a parent or responsible party of an individual with MR or any developmental disability. But I can tell you that the women who lived in that group home did not live empty lives. They were as diverse as any group of so-called normal people. Some liked television. Some liked to read. Some liked rock music. One even liked opera. Some were religious, some were not. Some liked to swim; others preferred a walk in the park. But they were as human, and all that the word implies, as you or me. Every one of them could at times be endearing or annoying, mischievous or harmless, kindly or mean, happy or sad, fun or boring. But on a good day or a bad day I do not believe for a second that any of them would have been better off having never been born. And their families, the very ones who bore the extra burden of caring for them all of their lives, as well as the friends whose lives they enriched, would say the same thing.

I guess that my experience, for whatever it is worth, makes me less than objective on this subject. If it does, I don’t care. If I have to err, it will be on the side of those who truly are the “least of these.”

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11 Responses

  1. Kelly says:

    What a great post brother. I have very little patience for people who would turn this into a political issue. I have a lot of mixed feelings on this subject, and like you I have some work experience with this population. Of the folks I worked with, even the ones who could get violent, I never sensed evil. These are people getting through their lives in the best way they can. Most of the time the behavior we see as strange is just them trying to communicate something. Imagine the frustration of always being spoken to like a child, being treated as if your wishes, your LIFE, is somehow less important to others.

    I have nothing but admiration for folks who knowingly choose to take on the challenges (and the poorly understood joys) of raising a disabled child. That said, I understand the fear that leads parents to choose to abort such a child. I would hate to be in that situation. I like to think that I would never choose abortion in any circumstance, but I honestly don’t know how I would react.

    I know a lot of people will not feel any sympathy for those that choose abortion. For those that make that choice because of their own inconvenience, I don’t feel any sympathy either. But people succumb to fear everyday, and all the information people gather to understand a congenital disability can be incredibly overwhelming and frightening. It’s a shame there is not more encouragement for these folks. If only you and I and the millions of others out there who have experienced how beautiful life can still be with Downs, spina bifida, etc., could share with them how rewarding getting to know people who are disabled can be! You nailed it on the head when you said they are PEOPLE first!

    So, to bring Mrs. Palin under scrutiny for choosing to give birth to her son is, in my estimation, shameful. Period. Did she do something admirable? Absolutely. But to use this as somehow making her a more worthy vice-presidential candidate smacks of opportunism of the worst kind. And anyone who would imply that it was wrong of her to give birth to a child when she knew it would be disabled, is evil. How anyone could ever denigrate a woman for choosing to undertake that life? To me, making that choice is an amazing act of self-sacrifice and love, and to repudiate that is the definition of evil.

    Thanks again Odgie for the sharing your thoughts. Got me fired up!

  2. odgie says:

    Kelly – Thanks for the kind words. You are right that Palin’s decision to bring Trig to term does not automatically make her more qualified to be VP. However, as Sullivan pointed out in his piece, it does show that she walks it like she talks it, and I give credit to everybody (especially a politician!) who does that.

    I was hoping to get your feedback on this, especially since you had some experience with the population in question.

  3. Jr says:

    Wow. Man. Odgie, I know that God has blessed you with the skills that you have, and the abundance of love that you feel towards those who are built just a little differently than the rest of us. They were sewn together by the hands of God for His Will and His Glory; just as all things exist for this purpose. Thank you for being a faithful brother in the service of the Lord for those who, unfortunately, are neglected by so many others (count me with that group, I confess).

    That 90% abortion figure is painful and sinful and reflects how selfish our society has become. When Daisha was pregnant with Naomi, there were some tests done and there was a higher percentage than normal that she would be born with DS. The doc asked if we wanted to do the amniocentesis to be sure and we declined. His response was telling… he was shocked. We told him it wouldn’t make a bit of difference whatever the test would be and the look in his eyes was two-fold – shocked and distressed. He asked us 5 times 5 different ways if we were sure about that. We were the exception to the rule…

    And not to go into politics too much, but the comments you read online after that article is a picture of the far left that has hijacked the democratic party. One can disagree with me and have knowledgeable and rational discussions with me about politics, and we can still share a beer and watch a game together (I do this all the time with a lefty co-worker of mine). But those people who spew such hatred are the lowest forms of carbon. How one can wake in the morning and operate in their lives with such hatred in their hearts, hurts to comprehend.

  4. odgie says:

    Jr – Thank you. However, to be honest, I didn’t give much thought to this issue until I found myself working with this population. Like many others, I just assumed that folks with MR were somehow taken care of. I didn’t know by whom or how, I just took it for granted. However, once I was in the thick of it I realized that in addition to the struggles they have due to the disability, they also have to struggle to get along in our allegedly enlightened society.

    And although I was very fond of the ladies at the group home, I did sometimes have to excuse myself and have a cussing fit. They were wonderful, but draining. I still miss them.

    Much respect to you and Daisha for going through with the pregnancy. I didn’t know that you ever had any reason to be worried.

  5. Kelly says:

    Yeah man, that is a time when the courage of your convictions really runs up against reality. And that does make Mrs. Palin a remarkable example in this era of expediency over morals. Anyone hearing her story, I would think, would have to respect her.

    But you just know there are people working for the RNC saying, “How can we use this to advertise for our candidate?” And I’m sure the DNC employees the same type of creeps. Those are the ones who need a good bliveting!

  6. Preacherman says:

    Interesting post and topic.
    Abortion is a tough issue.
    I can’t imagine a woman having a baby after being raped have looking day after day at the consequence of anthers sin and abuse.
    I can’t imagine a girl getting pregnant by father, uncle, cousin, or other family member and wanting to keep it. I can’t imagine what the girl goes through first of all through sexual abuse but then having again another man’s sin to be a constant reminder of what happened and went on is tough.
    I know parents have a difficult decission when they find out that their baby when has problems where they will only last a couple of years or die at birth.
    I don’t think the abortion law will ever change.
    The republicans have been in power so many time and have had chances time and time again to change the law.
    I think it is a political ploy to get Christians to vote a certain way.
    I think things are going to change for the best in America as President Obama and Biden lead this country into the 21st century.

  7. Jerri Harrington says:

    You have posted a sensitive and true assessment of people with MR! Just like all of us have unique value, faults, abilities, interests and gifts, so people with MR are among us, if only people would get to know them. My friend Ida Mae Harris had MR, and she lived with our family for 8 months when my two oldest sons were small and when our third son was born. Don traveled and I had to be on bed rest. I was going to ask for someone from church to come stay with us while Don was traveling, but Mae wouldn’t have any part of that. She insisted on doing exactly what I did every day, even to the point of getting down on her hands and knees and scrubbing my floors. Mae had asthma, and I wasn’t going to let her do that, but she said, “Let me take care of you, like you take care of me.” Mae became a Christian at age 52, and she gave up smoking that very day. She told everyone who would listen about what God did for her, and she remembered scriptures from Romans that convinced her to give her life to Christ. A few months later she moved in with us, and she acted like a mother to me. She was actually the same age as my mother. In military hospitals only family can visit new moms, so I claimed Mae was my mom, and she got to come to the hospital with Don and the boys and hold Don Curtis. That meant more to her than anything we could have ever done for her. All of my kids called her Aunt Mae, and when she died suddenly a few months after she moved from our house, I never grieved more for anyone in my life. How much we would have missed had Ida Mae Harris been aborted–she taught me more about humility and the servant’s heart than anyone I have ever known.

  8. odgie says:

    Kelly – As always in politics, both sides need a bliveting. And I think that you should be the one to do it!

    Preach – I think it is anybody’s election at this point, I just hope that the person who wins is best for the job.

    Jerri – You just beautifully illustrated my point. How can anybody read that and think that Ida Mae or your family would have been better off if Ida Mae hadn’t come along?

  9. Jr says:

    Preacherman: Why o why did you have to go political…

    There is a fundamental misunderstanding about the abortion law in this country. It is a federal law at this time that makes it legal. The ONLY thing the Supreme Court could do is over rule that law; which would mean NOT that it would be illegal to have an abortion, but that it would no longer be a federal law; which means it would be a state-by-state law. Then, each state legislature would have to take up the issue and make their own laws. This is how it should be anyway. Roe v. Wade should be overturned so that it would NEVER be a presidential issue again because they would no longer have any say or control over the matter as it would become a state issue. And that way, people could stop saying that it’s a ploy for Christians to vote a certain way for president. Though I wouldn’t argue that it has occurred.

    Another point, I think the figure is something like 5% of all abortions are because of rape or incest. That means 95% of the 50million+ abortions that have occurred in the United States are because the primary reason is selfish inconvenience (in many forms).

    And Obama voted against a bill that would have made it illegal for a doctor to kill a baby after birth if it survived an abortion. Nothing like a little infanticide to warm my heart for a candidate for president.

  10. Jenny says:

    Great post, Mike. Definitely touched a topic near and dear to my heart.

  11. […] recently wrote a couple of posts describing my concerns about how Sarah Palin’s youngest son, who has Down Syndrome […]

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