Idealism… and genetic consequences

Recently, I tripped across a clip on youtube of a very young FLDS (Fundamentalist Latter Day Saints) woman, who was being asked by a reporter how many children she wanted to have when she got married. She replied enthusiastically, “As many as possible!”

I sat in the clinic, and heard babies crying in other rooms. I remembered my own kids at that age. It had all seemed so simple then. Trust in God, and it'll all be fine....(

I sat in the clinic, and heard babies crying in other rooms. I remembered my own kids at that age. It had all seemed so simple then. Trust in God, and it’ll all be fine….

It was like looking in the mirror—though back in time, to when I was still a very conservative Muslim. Yes, that was our attitude, all right. We were pro-natalist to a fault.

The clip went on to explain that their church believes that God creates all these spirit children, and that the women regard it as an honor to enable these spirits to have bodies, and to provide good homes for them. So, they have as many children as possible.

While we didn’t believe in spirit children, we did certainly believe that it is God who wills whether or not a child comes into existence—to the point that some sisters would speak of birth control as “a waste of time”, because whatever God wants to happen will happen. Birth control was also widely denigrated in the conservative literature that we read as a lack of trust in God’s ability to provide for every living creature. And we were constantly told that a woman’s highest and most important calling was to marry and bear children. There was no real place in any conservative community that I was involved in for single women who had never and would never marry—or even for married women who were childless.

And we, like the FLDS women in the youtube clip, were supremely confident that we were providing the best possible life for our children. Because they were being raised in a very pious Muslim bubble.

When I was (very) pregnant with my first child, my mother tried to have a discussion with me—which was really more like a one-way monologue. It was clear that she didn’t think that I should be having a child. She seemed to be all upset, but was holding it in—my mother was not one to show emotion even in the most dire circumstances. So, she was trying to be calm, and mostly managing it. She was asking me questions like, “What are you going to give this baby?” And I was sitting there, not understanding that question at all.

It was a blazing hot day in the summer, and we were sitting in the little, south-facing, roach-y apartment with no air conditioning or even a fan, where I lived with my then-husband. We slept on an old mattress on the floor. We didn’t have a crib for the soon-to-arrive baby, or clothes for him either. We were living hand-to-mouth.

At the time, I honestly didn’t understand why she seemed so appalled that I was having a baby. I decided that because she didn’t like my then-husband (something that she made little secret of) or approve of my conversion to Islam (something that was also evident), that she was upset at the idea of having a Muslim grandchild. In other words, I assumed that she was speaking out of prejudice. But looking back, I can see why she would be very concerned. How were we going to manage? And even more importantly, what sort of future were we going to be able to offer this child?

But at that time I wasn’t worried about the financial end of things. We weren’t starving, after all. Things were very, very tight money-wise, but we’d managed ok so far, and why would a baby make that much difference? We worked hard, and trusted in God. As we were always being told that we should do.

Fast-forward to today… and there I was, sitting in a genetics clinic with one of my children.

It was one of those days when my past extends its ice-cold fingers down into my present. What my hands have sent before.

There is a serious medical issue in my birth family, that is passed on genetically. I may have the gene for it. They told me today that I have a 50% chance of having it. And, that my kids have a 25% chance. After asking me a large number of questions about my family medical history, and diagram-ing it out. But I would need to have tests done.

The whole thing was rather unreal. The genetics counselor was very polite, but didn’t seem to believe what I was saying about the family medical history at first. I couldn’t understand where the disbelief was coming from.

Was it because the assumption was that as I am not a medical professional, I couldn’t know what I was talking about? It took me back to a time years ago, when I was attending a friend’s birth, and the midwife expressed her surprise that I knew some medical term-or-other. I was a hijabi then, and I often encountered the assumption that I was not too bright in those days. But now? What was going on now? And why the evident surprise at the number of children I had, their ages, and what I was doing in the clinic today? Even after I explained that my daughter had been referred to the clinic because whether she has the condition has a bearing on another medical issue that she has, puzzlement was still evident.

But later, as I headed home, the penny dropped.

The genetics counselor was puzzled by the spectacle of a white, apparently educated and middle-class woman who (1) knew that she might have inherited a serious and potentially life-threatening medical condition, but (2) had never gotten herself tested for it or (3) sought any kind of genetic counseling before having children… and had merrily gone and had multiple children. In her mind, something did not compute. And as I sat on the bus going home, looking at myself through her white, middle-class eyes, I had to agree that it was just… really irresponsible.

What on earth had I been thinking? Or rather, not thinking. Why had it never even occurred to me that I ought to think twice about whether my kids could inherit the condition, and if it was reasonable to risk it?

But I didn’t really think about the future, back in those days when I was having kids. At least, not in any concrete way. I never asked myself where I would be in five or ten years. The thought didn’t even occur to me. We were focused on the day-to-day (primarily, on how to live piously). We thought about the future primarily in the sense of the after-life. So, we were very concerned about the torture of the grave and the Day of Judgment and heaven and hell. When it came to thinking about the future for our children, that was what we focused on: how could we do our best to ensure that they would go to heaven when they died? We didn’t worry about things like genetics. That was up to God.

Looking back, it all seems so… cultish. But these attitudes weren’t even from The Cult.

I well remember a very “mainstream” Sunni conservative and vaguely Salafish high-up in the community where I was living at that time whose wife (as was well known) had a serious and life-threatening medical condition. She and her husband had been advised by doctors that another pregnancy could kill her, and that they should not have any more children, because the condition was passed on genetically. But she became pregnant, refused to have the abortion that the doctors recommended, and delivered another child—which had inherited the condition. The husband used to tell this story as “proof” that belief in God’s power will make everything work out for the best, regardless of medical advice. Some people rolled their eyes at that when he wasn’t looking, but nobody stood up and said that this is an absurdly irresponsible attitude.

The pressure to have kids then was intense. And again, this was not even in The Cult. This was all over, where I was living then. There were barely any married Muslim women that I knew who didn’t have kids, unless they had fertility problems (and then, they were seeking medical help to solve those). I didn’t know of anyone who had decided not to have kids, or to stop at having only one, because they feared passing on a genetic disease.

No conservative Muslims I knew held off having kids because they were poor, even. Much less because they were worried about managing to afford to send their kids to college. God would provide. That was what we thought. And it never occurred to us either that our kids might later resent having been raised in such straitened circumstances, because we believed that all that mattered was that we were teaching them what they need to know in order to live pious lives and (insh’Allah) make it to heaven.

Sitting on the bus, all this had an air of unreality to it. It was like another lifetime, in another dimension.

The woman sitting in the seat beside me was busy scraping at a card or something that she held in her lap. Welcoming anything that seemed a bit more down-to-earth than what I had been thinking about, I looked at what she was doing out of the corner of my eye. She was holding what looked like a cross-word puzzle, but I could see from the top of it that it was a lottery ticket. A lottery ticket that worked like a cross-word puzzle?!? What an odd thing.

I had never seen or heard of anything like it, I realized. For so many years, I had been present in the world, but not paying attention to much of what was going on in the parts of it—the vast majority of it—that lay beyond my comfort-zone. What was probably very mundane to her looked positively exotic to me. And if I had asked her what it was, she’d have likely thought I was very strange.

I shook my head. No, this was not a “give glad tidings to the strangers” moment.

No, not at all.

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  1. #1 by Anonymous// on February 5, 2013 - 10:32 am

    “Birth control was also widely denigrated in the conservative literature that we read as a lack of trust in God’s ability to provide for every living creature.”

    When Ghazali says in the Ihya (of all places) that a couple can legitimately practice birth control for fear of not being able to provide for their kids? I’m sure this was true of your community, and I also know that you’re smart enough to see that the classical heritage is a very complex beast- unlike modern appropriations of it…and I don’t mean to say they shared whatever modern sensibilities when it came to anything- that’s bad history and an intellectual cop-out.

  2. #2 by Jenny Jones on February 5, 2013 - 3:01 pm

    Ohhhhh,,,I wanna play…need more time. This is very very thought provoking for me. I’ll be back

  3. #3 by nmr on February 6, 2013 - 6:34 pm

    First off, I just want to say that when it comes to genetics there is additionally the concept of “penetrance” which means that there can be a lot of wiggle room in the diagnosis. It is not a death sentence. There are a lot of ways to modify behavior (diet, activity, etc), and sometimes even medications. I used to have a professor back in undergrad days who would bring in his Downs Syndrome daughter for one of his genetics lectures. Yes, there are some Downs Syndrome individuals who need to be institutionalized for life, but this professor’s daughter could play the violin, speak two languages, and was very charming and unafraid in a room of 300+ people! Even intelligence, which scientists now claim is 60-70% genetics based still has a 30% area of wiggle room! I can take 30% and do a lot with that! For complex diseases in which more than one gene may be involved, there is a lot of room for variation.

    Second, I thought there was some line in the Qur’an about men should not have more children than they can provide for.

    Third, God may provide the basics, but if you stretch your resources too thin, then everyone is going to get just that- the basics. It is up to human beings to pool those resources to their best advantage, and in many cases, that entails having fewer children. We live in such a time when we do have massive control over our reproductive capabilities, and in a world with a burgeoning human population, reduction of natural resources, pollution problems, and more people living in urban areas than rural. In our role as God’s vice-regents to the planet, I think humans have a very serious responsibility when it comes to monitoring their reproduction and considering the impact of future generations on the non-human world.

    Interesting sidebar: in Pakistani law, a man must obtain permission from his first wife before he can marry a second wife (and yes, the conservatives went whack-job nutso against this proposal. It passed, but in their wrath they drove Fazlur Rahman- who crafted the legislation- out of Pakistan). I think this is a particularly good piece of legislation because the wife is in a good position to assess whether or not the man is financially capable of supporting two families. Most Pakistanis I have met, who were married after this legislation was passed (and these are typically middle-class folks), only have one wife.

  4. #4 by ki sarita on February 6, 2013 - 8:57 pm

    my best wishes for your daughters good health

  5. #5 by Jenny Jones on February 9, 2013 - 7:06 pm

    I found this attitude “trust in God and reproduce” to be mostly culturally based (in my case, my social community was heavily Arab-dominant). I’ve also noticed that it seems to be more heavily practiced by the middle and lower income groups.

    The problem that I encountered is what happens within the “community” when children are born or develop a “disability,” (as my son was (high-functioning Autism)), there is no support–but worse than that, there is a tone of superiority and gossip (as opposed to inclusion and compassion) that is devastating.

    As a former heavy-duty member of the community, I wanted my children to go to Islamic schools, so I enrolled my children in a local one. My son was behind, and once they noticed that he “had a problem” he was literally kicked out of the school (because the school wasn’t appropriate for him according to the hijabed and pious principle)–even though I offered to hire an aid to work with him (to reduce the load on the teachers–although they averaged less than ten children in each class). I also offered to join the staff free of charge to help him and the other struggling children FOR FREE. Of course the reason I tried so hard was because the other children were all my son’s friends (and as many know, children on the Autistic spectrum need all the friends they can get). I so wanted him to be included that I struck a “deal” with the school that I would homeschool him in the lobby, so
    he could join the others for prayers and recess. This lasted for about 6 months, until we were told that we could not continue–and I had to enroll him in public school. Message understood–only perfect children are important enough for an Islamic education. Honestly, it broke my heart and my son’s as well.

    BTW, that son now is 16 years old–and is so GOOD that he prays every prayer (with sincerity that I cannot match), and councils ME on being kind and patient to others. Sadly, he has no friends (although those who attend an attended the Islamic school continue to socialize with each other). Still, I try not to remember those days because It is so painful when I do. I suppose it was the catalyst that drove me away from the community (although big picture hindsight that might have been a good thing).

    • #6 by xcwn on February 10, 2013 - 11:17 pm

      Jenny—I am so sorry that you and your son had to go through that. Though unfortunately, I am not at all surprised. Yes, that “trust in God and keep having kids” attitude did not take into account what would happen if a child had special needs. In my experience, there was little or no room for kids with learning disabilities in Islamic schools or programming aimed at Muslim youth—and no recognition at all that some kids have mental health issues. Yup, only perfect children deserve inclusion among God’s chosen, apparently. 😦

  6. #7 by charmedshiva on February 10, 2013 - 5:32 am

    You have such an interesting life story! I wish you and your daughters (and sons?) the best of health. I’m so glad you are out of the cult life now.

    I was writing up a report and noticed that the Pew Forum on Religion & Public Life said that for their sample, the Mormons and Muslims were the religious groups with the highest number of children (largest families). Sounds about right… lol

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