This has been edited a bit since I started writing it, but I left the original date and time on it because most of the writing is from that time. I felt that some of the writing was too harsh and also had some additional things I wanted to say.
Every so often the same discussion comes up on the preemie lists: "heroics" and the NICU. The problem is that due to cases like that of Terri Schiavo, now the discussion widens to include the general concept of eugenics. A study was recently released demonstrating a high rate of negative long-term outcomes in preemies at 20 years of age. This is really nothing new, but it's information that most parents aren't given and it's information that most of the general public doesn't understand. Most of the public thinks of preemies as miniature babies who eventually become regular kids. I'm having trouble with a bit of language used by one person who proposes distributing information about this study to parents and the public. The words she used are: "parents and the public be allowed to act on these truths in ways that make
sense for their communities and their families." Reading these words from a person who regularly advocates the withdrawal of life support frightens me--not because I advocate the provision of heroic measures without parental consent, which is what some parents assumed when I spoke up but because it's very easy for the two agendas to get mixed up, just as easy as it is easy for my pro-life agenda to get mixed up in what I do, and people are quite offended by that possibility while they seem to think that it's ok to have a "pro-choice" (pro-ending-life) agenda getting mixed up in the dissemination of information. What, exactly, is it that "makes sense for the family and the community" that the parents and the community should have the right to do? That's some pretty vague language and open to a very wide variety of interpretation! Some people think it makes sense for anyone with a disability to be sterilized and locked up in an institution. If you think that's crazy, that's what was done just 50 years ago, and there are people in our society who think that all this "integration stuff" is more trouble than it's worth. I've met them. I've interviewed for jobs with them. Everybody has an agenda. So let's not get bogged down in arguing who has an agenda and who doesn't. I'm having a problem with the clash of this particular person's two agendas and mine.
I am not the only person expressing fear of being "cast aside" or viewed as "worthlesss" because of my disabilities; but I am still struggling with the reactions of some of the parents on the list. It seems that they don't want to hear what I have to say. They feel that I take this too "personally" and that I don't understand their points of view because my disabilities are nothing like their children's. The reaction to my posts comes across to be saying, "Of course, we wouldn't be saying the world would be better off without you. We're talking about these other people who REALLY hurt. One parent talks about adult preemies with whom she has spoken who have said that they wish they had never been born. She cites the rate of suicide in adult preemies. She doesn't cite discussions with preemies like myself who are glad to be alive.
I'm trying to sort out my feelings about the discussions, and particularly about the reactions from parents of children with severe disabilities. My reactions are about something more than just how it feels personally. They are about a couple of themes that keep coming up in my life and thoughts lately. Does a person have to have experienced disability or have been caregiver of a person with a disability in order to be able to advocate effectively for or minister to people with disabilities? Are people with disabilities valuable with their "flaws?"
I don't pretend to understand the issues facing the parent of a child who will never live independently, although something worth noting is that part of what I feel is my purpose in life is caring for children who cannot live independently as adults. I am not in a position to adopt right now, and I cry about that a lot because it's something I have wanted for a very long time. But someday when I am, those are the children I want. I expect life to be difficult. I expect therapy appointments, sleepless nights, difficult behaviors... And these aren't things that are abnormal to me--I grew up exposed to disabilities on a daily basis because "inclusion" was not the norm at the time. So perhaps I am much more sensitized to disability than the average adult my age. Many parents are blindsided with disability, and I understand that their concerns are what life will be like for their child and how they will handle it as parents.
What life will be like for the child. Let's take that one first. Of course, I can't speak for every child. I can only speak for myself. When people talk about taking a person off life support in order to spare the person the pain and suffering of a poor quality of life, in some ways I can understand this. But in some ways it's a terrifying idea to me. If someone had known when I was a baby that I would experience migraines with such severe pain that I couldn't get out of bed, couldn't think clearly; if someone had known that I would be unable to find full-time work for seven years because companies would not want to hire a blind person; if someone had known that I would feel alone because I could not participate in conversation at a restaurant because all the conversation sounds garbled; if someone had known that week after week I would go to church and form no real friendships ... would someone have decided to take me out of that incubator in order to spare me this "pain and suffering?" Is it ok for me to go through it because I have the ability to understand it? Is it not really considered painful because the pain is mostly nonphysical? Can any pain and suffering really be understood? But more than that, does that pain and suffering somehow negate all the positive things in my life? If I am disabled, am I somehow less able to contribute to the general welfare of society? I guess so, if society is defined by my ability to produce or provide something tangible to someone else without taking too much from others. That seems to be the crux of the problem: worldly society is defined in just this way. So the life of the person who is disabled cannot be valued, and the higher the production expectation the more ability the person must have in order to survive. It really does scare me, and I can't see the issue remaining in the NICU. That's why the particular language bothers me. Eventually that language is going to get out of the NICU and out of the hospice. I'm not alone in fearing it. It's just easy right now for nondisabled people to think that I'm overreacting because I need something to get emotional about.
And that's what happens when I get into these discussions: people think I'm overreacting because I didn't require "heroic measures." I required an incubator, and that's very different from a ventillator, various surgeries, etc. But there was once a time when incubators were not used, when babies like me were left to die. There are people who view a feeding tube as too much technology--their opinion is that if a person requires a feeding tube in order to livve, the person isn't meant to live. Yet there are people who need feeding tubes who can walk and talk. The only difference between those people and Terri Schiavo is that they can walk and talk. So they deserve to live and she doesn't because they can respond and she can't? Where do we draw the line when a person's brain is capable of supporting basic breathing and digestive functions? It all comes down to who the author of life is and who has the right to give and take it. I know there are times to let a person go peacefully who is in the process of dying, and I know that that is a very difficult decision to make. But some of this language is very hard for me as a person with disabilities to hear, and parents and caregivers need to think about the reasons why. If they're concerned about "quality of life" issues for their children, they should be listening to people with disabilities--and not just the ones who say they wish they had never been born.
Parental coping. That's a harder one to tackle, partially because there are parents who resent commentary from a person like me: a person with mild disabilities who is not a parent. I remember someone saying just this very thing to me one time: "They don't want anything to do with you. You remind them of what their child will never be." I cried. Don't they understand that I love their kids and I want to give them every opportunity to become whatever they can be? It doesn't matter. I remind them of what their kids can't be--and in some cases maybe it seems to them that I'm trying to identify with something I have no clue about (parenting and severe disability). That isn't true--I can't identify with those things, but it isn't necessary to identify completely in order to care. That might sound like just the statement from someone who thinks she can know all about something without having been there. But I also have the perspective of a person with disabilities who has learned that nondisabled people can, indeed, occasionally get into my world and take up my causes with just as much fervor and compassion as another person with disabilities. Not many do; but those who do bless me and give me hope that maybe the rest of the world can also learn to care. I'll write about that at some point because maybe it will be meaningful to nondisabled readers of this journal.
So what about the parent's dilemma? My proposal to the original poster was that along with grim statistics parents be encouraged to meet some people with disabilities so that they could find out how life is lived in the long term, that disability isn't necessarily tragic. Someone responded to me, "Don't take this wrong, but I think it's better that they talk to other parents." I "took it wrong," at least probably in her definition.
I would never suggest that parents not talk with other parents--in fact, I founded an online support group for parents of blind children for this very purpose in 1998, and it now has over 350 members. There is no substitute for this. I understand that her perspective is very different from mine--her child is not going to live independently, and she as a parent is faced with some very important long-term issues. I would never deny her the opportunity to talk with other parents. I am proposing that somewhere in the course of those discussions, an adult preemie or two enter the picture--not necessarily only one like me, although I think that it's good for them to see that some preemies do turn out to have mild disabilities and live fulfilling lives, but perhaps one who lives with more supports. It can be scary and upsetting to see those adults and hear that speech, but part of confronting the grief process is confronting attitudes about disability in general. When I was little, my parents never had this kind of opportunity. They had factual expectations that I would grow up and go to college and work, but for all they knew I might become like the stereotypical blind people they saw on the streets. I think that meeting successful blind adults (when I was a teenager!) was a relief for them that had been a long time coming.
What some people are proposing is giving parents statistical information about preemie outcomes in order to aid decision-making about heroic measures. In theory, this seems good: if you have your baby at 23 weeks, you need to know that the statistical likelihood of disability is extremely high. But statistics can mean many different things. 80 out of 100 children are mentally retarded does not mean that this particular child has a 20 percent chance of being mentally retarded. There are individual factors that mediate the outcome for this particular child, and discussing those factors is very important. So "how" truth is presented is as important as the truth itself. A lot of time there isn't enough time for this in the NICU environment. If the measure is going to be taken, it needs to be taken soon because every minute can count in a preemie's life.
I'm reading a book called Brittany: Child of Joy, written by the mother of a child with a condition called arthrogryposis which causes mental retardation and physical disabilities. She talks very openly about the impact of the way that the diagnosis was made, her relationship with the doctors, the reactions of family and friends, etc. She also talks about the statistic issue at length, which is where I got the 80 percent example. I didn't read the book right now because of my interaction with the person on the list; but it's interesting that I chose to start reading it now. Yesterday, as I started sorting through my reactions to the discussions, I prayed, "God, give me compassion for her, and help me to understand her." Perhaps reading this book is helping me to see some of the possibilities. Does she resent the intrusion of strangers into her life with just enough information to frighten her but not enough to help her prepare for her child's life? I know enough about the complaints of preemie parents that it is a lack of information they resent. Some of the stories I've heard are appalling, and they aren't even uniform: everything from doctors doing things without their permission to doctors writing off babies and taking time to provide treatment when outcomes might have been markedly better if treatment had been provided much sooner. I do understand why parents are angry.
But where is the child in all this? Growing. Living. Becoming an adult. When does the parent get out of the NICU and understand the person as an adult with disabilities? A parent is always a parent, but the "adult child" is still an adult and somehow needs to individuate. Maybe it seems too early to think about it at age five or six or ten ... but those years go by very quickly, and isn't parenting always about working toward adulthood, whatever that means? Perhaps for some people it doesn't mean owning a home or renting an apartment. But life is about looking ahead while somehow enjoying the moment.
Sometimes I think that's precisely what frightens some parents. Anne Adams writes:
But here was a picture of a young man with the same disorder-microcephaly ("small head") or what yellow journalism then called a "pinhead." The top of his head sloped gradually back and up, leaving him with an elongated cranium, bulging eyes, a sloping forehead, and an obviously retarded look. I also read that such individuals had at one time been common exhibits in freak shows at carnivals. Was that how Brittany was going to look? I turned away in revulsion, but somehow I couldn't put the book down and leave it. I returned to the book several more times. Somehow, it just didn't seem believable, such a repulsive sight... and maybe Brittany? (Brittany, p. 68)</i>
I suspect that many people would deny a sentiment like this--it's not "politically correct" to admit to being repulsed by people with disabilities, and being "politically correct" is very important these days. It's part of our society's general denial culture--we're supposed to be loving and kind to each other, hide our cruel feelings. But the truth is that we all have people we don't love. David Mains discusses this concept in Healing the Dysfunctional Church Family,
That's Paul writing to the church in Corinth in 1 Corinthians 13. In our day he might have written, "Love isn't given on the basis of performance. It shouldn't have to be earned."
I made a list of individuals toward whom I have trouble extending Christlike love. It surprised me to see the number of names I came up with.
If I'm not careful my attitude toward these people is, If you want me to be nice to you, you're going to have to earn it and that means you'll have to change your ways!
My list has seven categories. See if you can identify with any of my struggles.
1. People whose needs seem never-ending. I prefer helping those who, before too long, can make it on their own. I start getting impatient when someone's problems are a continual drain on my bank of time or money or Christian love. I'm not defending my attitude; I'm just trying to be honest. Going the second mile with needy folk comes easy for me, but not running twenty-six-mile helping-marathons back to back! Unfortunately, a lot of people today need more than fast help every now and then.
2. Those people I do a lot for, but who don't seem to be very appreciative. These are individuals who take what I give and hardly say thanks. They act as though I owed them my help. Or they're people who almost resent what they see as my supposed advantages over theirs, and never notice what the relationship costs me. That's when I start thinking, Before I extend you any more kindness, you're going to have to earn it!
3. Individuals I sense are out to get me. I really have trouble loving those people. Maybe I said something honest and straightforward-it might have been in a sermon, even a word from the Lord-and apparently it stung. This man (or woman) took a general challenge and personalized it. Resentful, he subsequently used his influence to undermine me or my ministry - saw to it that certain doors never opened to me. It's not to my credit, but I find this kind of treatment hard to swallow. In such circumstances, for me, it's not easy to be Christlike and to keep extending love.
4. People I don’t feel I can trust. They say all the right words-I just don't believe them. Like the consummate politician, they're great at talking out of both sides of their mouth. Characters like this can be discovered in novels and movies and television shows, but I find they pop up every so often in real life as well.
5. Those who are incredibly slow at realizing they've disappointed me. They're naive, surprised by my feelings. "I just didn't understand," they respond. "If I had known, I would have been far more sensitive, believe me. It just never dawned on me that you were going through so much pain."
6. Individuals who haven't been loyal. Especially when they make a big thing about being on my side. "When push comes to shove, I'm in your corner, brother." But when I need this person, I turn around and he's nowhere in sight. When that happens I get mad-say things I shouldn't.
7. People who shut me out of their world. There's something about me, I'm not sure what it is-how I act, what I believe, the things I say-that makes some people cautious: "Be nice, but keep Mains at arm's length. Don't ever let him on the inside!" Usually I'm not quick to pick up that this is happening. It takes me awhile to realize what's going on. But when I finally do figure it out, my UNCHRISTIAN response is, "Forget you, pal. I'll just exclude you from my world too." (pp. 19-20)
I would add an eighth category to that list--and it affects me as much as it affects other people I know: I have difficulty loving someone who is subject to a lot of criticism by people who are significant in my life because I fear losing the significant person's acceptance. There are some cases where I can defend the person, love in spite of this lack of acceptance--or perceived lack of acceptance. But in other cases... If some doctor told me that my child's voice was going to sound like a bull horn... That's a really simplistic example, but it's also something that would be significant in my family. we would find it quite difficult to cope with a child shouting out in the middle of places that are supposed to be quiet. That would be as repulsive to me as looks are to some parents.
But the person on the preemie list isn't thinking about her child being repulsive. She's thinking about his inability to live independently as an adult and who will care for him when she can't. It isn't necessarily a focus on herself as a parent, but it's a focus on his basic needs because it's the part of his world that is readily accessible to her. And it's what moms do: make sure their children are cared for. So what is it that's bothering me?
What to write about later: the concept of wishing one hadn't been born and considering suicide...