“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Wednesday, November 21, 2007

99 Balloons

My wife Kathi, turned me on to a wonderful video entitled 99 Balloons which you can view at the website listed below.
In a nutshell, it is the story of a young couple who via prenatal diagnosis discover that they are carrying a child with trisomy 18, a chromosomal difference that causes children to have severe intellectual disabilties, and who typically die within their first year of life. This couple, the Mooney's, however, do not take the route of abortion, thereby "preventing" the birth of the child. They have the child and take you on a journey with them through Eliot's short life. It is a wonderful video, very life affirming.

It reminded me of a book I read a while back called Defiant Birth which I wrote about in this blog on 8/11/06. In that posting I wrote the following:

In the book Defiant birth: Women who resist medical eugenics the author
Melinda Tankard Reist takes on the notion of prenatal diagnosis leading to
abortion through the stories of women who having received the diagnosis that the
child they were carrying was determined to be disabled, chose to have the
child anyway. Of course she relates stories of those who were misdiagnosed,
however, the thrust of the story is the experience of women who gave birth to
children who were born with various disabilities. These disabilities include
anencephaly (a disability which typically takes the life of the newborn within
hours or days) and of course down syndrome. There are many amazing lessons to be
gained. One, for instance relates to carrying a baby with anencephaly to term.
Overwhelmingly, doctors would advocate for abortion of such children as they
will die soon after birth anyway. Tankard Reist, however, says that if you knew
your child would die in an hour or a day, would you choose to kill your child or
would you enjoy the hour or day you had remaining with your child? Mothers spoke
of their child living his entire life in their arms, of celebrating the 1 day
birthday, or the trip home from the hospital. They also spoke of the impact for
good the birth of the child had on their lives.

These types of stories are an affront to too many in the medical profession who advocate prenatal diagnosis and abortion. In an Animal Farm kind of way, they describe this procedure with words like "prevention" but we are talking about the killing of an infant. It is particularly insidious to me that people, particularly women who are in a very stressful, very unsure position are not given all the information in order to make their "decision." Even the notion of a "decision" as to whether someone should live or die reflects a position in favor of death. I don't get to make decisions about the people I work with because that is immoral, and should I make a decision to take someone's life, there is a good chance that justice would prevail and I would loose my own. Yet in the case of a newborn with severe disabilities, we have engaged killing by couching it as a decision. I have had many interactions with the medical profession which supports my feeling that they are morally and ethically lost.

I once worked with one of the top physicians in disability in the country. This doctor is known for his work on behalf of children with disabilities. However, I often accompanied him when he would tell parents or teach students to just tell the family who have received a prenatal diagnosis of disability to "abort and try again." That is all that life is...abort and try again. Could I cheapen the value of a life any more than to dismiss it by saying, "kill it and have another baby." This is wisdom in the eyes of many in the world, and many in the medical profession.

In another instance I was a medical student taking a class in Genetics. After you have watched the 99 Balloons video, consider this. The professor speaking specifically about trisomy 18, what Eliot had, told the medical students, "You can reassure the parents that the child will die in the first year of life." Once again, I am struck by the perception of the lives of people with disabilties as perceived by the medical profession. It is portrayed that their deaths are a blessing for themselves and all those around them. We can relax, and be comforted by the knowledge that they will soon be dead.

Videos like 99 Balloons and books like Defiant Birth are critical strikes in the war for life. They are an attack on the supposedly conventional wisdom about disability and we need many more of them. We also need people with severe disabilities to have a presence in the church.

I remember in the whole Terry Schaivo incident, whenever reporters were filmed at the scene, in the background, there were many protesters holding signs which often had a Christian message. Christians are quick to condemn the taking of innocent life as they should be. But I also wondered how many innocent lives of persons with severe disabilities were present in the churches of those protesters. You know, it is one thing to talk about fighting home invasion and quite another to invade my home. I will fight to protect the life of children, but I will go much further when it comes to my own children. If people with severe disabilities are in our churches, our fight for their lives will become more heated, more urgent. As it is, we are fighting for an ideal, not for our friend who sits in the pew next to us (imagine if persons with severe disabilities were actually in the pew next to you...I pray that God will make it happen).

May God bless this little family who had the courage to bring their severely disabled child to life, to love him for 99 days, and to have the wisdom to film their experience such that we can all be edified by it.



Anonymous said...

What an amazing event this was. Through the brief life of this little boy the lives of countless others nave been, and will continue, to be changed.

After watching the video I scrolled through the comments written by some of the women (I think exclusively women) who had viewed the video earlier. Some of them had also lost babies to SIDS or other neonatal complications. Others expressed their gratitude to this family for sharing the story of Eliot's brief life. All wanted to voice their amazement at how God touches each of us with each person we come in contact with, and confronts us with those who have disabilities.

As you have often said, Jeff, when disabled persons are around us, their very presence forces us to make decisions; they change the very environment around them, and we have to decide how to react. We accept or reject that person based on our willingness to accept their humanity or personally accommodate their special needs.

The decision to reject a person who may not be able to communicate the ways we are used to communicating, or whose control of bodily functions makes it unpleasant to be around them (especially if it involves us doing something about it!)is no more a "decision" than opting to "prevent" the birth of a child with severe disabilities.

The rejection is, in effect, a death sentence pronounced by individuals, society, and all to often, by the Church. It means that a decision has been made that this person does not meet the minimum requirements for membership in this group. Therefore, "You are banished; I accept no responsibility for you. Go away and trouble us no more."

But when these people are not rejected, when their spiritual freedom, springing from their uninhibited expression of love is valued and accepted, things change. Worship changes, prayer changes, the way we interact with each other changes; the way we define what it means to be human, and how we relate to people changes. Everything changes when we allow disabled persons into our lives.

Thank you Elliot, and thanks to you too Mom and Dad for allowing your son to touch me.

Alexis said...

I am one of those who chose to carry a baby destined to die shortly after her birth. Eden Rebekah was a very real and very alive little girl, and a precious gift to my family, friends, and church.

It breaks my heart to see the mothers who are rushed to terminate before they have a chance to even think things through. Who are told horror stories of their children's disabilities or deformities.

Thank you for sharing this, it will impact so many.

You can read Eden's story at threeforme.blogspot.com

Jeff McNair said...

Thank you Alexis for your comment below. You and your husband's as well as your family's courage and choice to do the real right thing is admirable. May God bless you all. I would recommend to readers of this blog that you visit the weblog listed and in particular view the video of little Eden Rebekah.