For several months I've been reading Theology, Disability and the New Genetics: Why Science Needs the Church.  It is a dense book (I frequently have to read things two or three times just to begin to understand what these doctors, scientists, philosophers and theologians are writing), filled with essays from a symposium by the same name held in 2005 at the University of Aberdeen.  I am grateful to God for the abilities I see evidenced in this book, some forming significant arguments in defense of those living with disabilities.  Some, however, write in ways that are both clever and dangerous to those individuals not-yet-born who have disabilities.

Occasionally I become concerned about how arguments are framed in defense of individuals with disabilities.  They come periously close to the arguments used by those who believe that babies with disabilities are better off aborted, or those who see older people with disabilities as entirely liabilities for which society should not have to pay.  Why should we expect that using the same arguments with different information will work? 

For example, Bernd Wannenwetsch, in his complicated, sophisticated essay he prepared for that 2005 symposium entitled, "Angels with Clipped Wings: the Disabled as Key to the Recognition of Personhood," writes:

Hans Reinders points out the significance of a 'transformation experience' that those who care for the disabled often undergo and testify.  A peculiar transformation happens as the focus shifts from agonizing about the experience of a multiform hardship that is thought to await them to the actual experience of living with this particular human being and the multiform way in which they find themselves managing and growing in the process of facing difficulties as they actual (sic) encounter them. (Theology, Disability and the New Genetics, p. 194) 

 

The problem with that statement isn't that it is wrong - it is entirely true in my experience, and for many parents of children with disabilities that I know. 

The problem is that it is an argument based on utility.  In this case, caring for a person with a disability results in the benefit of personal transformation.  Because there is a benefit, the person with the disability has value.  That is an extremely dangerous place to land.

It is much the same case I find myself making at times; I have told countless people that being Paul's dad and dealing with the daily issues related to disability have been worth it for all the benefits that I have accrued. Others agree that this is a good argument to make.  Frequently I have seen comments on blogs and in editorials arguing from the benefits experienced.  It does not take long to find someone (like me) saying or writing, "if only people could experience the love and joy I receive from my child, they would understand his worth."

Unfortunately, someone who does not want to deal with all the complications of raising a child with a disability can make the same argument with equal intellectual integrity and greater societal approval: "I do not want to put someone else through such pain and suffering, nor do I want to experience such deep pain and suffering personally, nor are the benefits of such a transformation observably sufficient for me to want to deal with this issue for the rest of my life."  Combined with a cultural expectation, often reinforced by doctors, that such a life isn't worth living, we see the results in the declining numbers of children being born who have identifiable disabilities in the womb.

So, if highlighting benefits isn't the best argument, what is?  Justin Taylor writes Between Two Worlds and consistently provides good resources to help make better arguments in defense of pre-born children, including children with disabilities.  His blog just yesterday introduced me to yet another author who sounds promising.

As one who celebrates the sovereignty of God in ALL things, the best argument I can make is one based on what I see from the Bible, which also makes me frequently look foolish to those who do not believe either the Bible's authority as God's word or the sovereignty of God in all things.  But it is the best one I have: who God intentionally creates, I will serve in the strength God provides, for his glory and for my good.

For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. Psalm 139:13-16

 

Then the Lord said to him, “Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?" Exodus 4:11

 

Whoever serves, as one who serves by the strength that God supplies—in order that in everything God may be glorified through Jesus Christ. 1 Peter 4:11b

 

And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me.’ Matthew 25:40

Ultimately, the transformation we should be talking about isn't the one we experience from parenting a child with a disability, it is the eternal transformation that comes from faith in Jesus, understanding ourselves as entirely sin-filled and needing an imputed righteousness only Jesus can provide because only he is sinless.  I deserve far worse than parenting my son with disabilities. Knowing that this God who can create out of nothing and who provides a savior to deal with my sin is also going to provide for all of my needs in parenting puts things into their proper perspective: a few decades dealing with disability will be as nothing someday, whether or not I experience any benefits at all from raising a child with a disability.  The fact that I do experience benefits in raising this particular child, who will never earn an income and who will never live on his own, is all grace and mercy, and entirely undeserved.  

Dr. Wannenwetsch follows up what I quoted from his essay, not standing on that single argument but pressing into the definition of personhood in ways I find encouraging:

This is why we can say that the life of a human being that we perceive as 'disabled' or 'retarded' is central instead of peripheral to the language-game of personhood.  It is so because of its critical character - critical not in terms of the ontological question in regard to 'them' (are they a fully human being?) but in terms of the challenge it puts to us: our moral response to its challenge on our expectations, career-planning, general outlook in life, both in individuals and in society at large. (p. 196) 

 

In other words, don't waste the opportunity to bring that disabled baby into the world; he or she is central to how you will understand and respond to everything. And I would add, that life is central to God.