Bethany was kind enough to add to the discussion on genetic screening yesterday. She also wrote about it on her blog and added some questions of her own:
Is it too much to expect my doctor to value my child herself, not just because I value him/her?
Is it dumb to insist on a pro-life doctor when a pro-choice one may be just as or even more skilled medically?
Is it worth making a fuss about these tests. I mean, should I just go through with them to make the doctor happy?
Would it possibly be helpful to know about a disability before birth? Would it allow time to get the necessary specialists together so the baby could have instant care upon birth?
The question about knowledge of disability before a child is born is a really difficult one. People are generally not neutral on that subject, either. The way it is handled can create division between friends and family and church members.
Here’s how we talked about it in a document we submitted to the Elders of Bethlehem almost six years ago:
While we take a strong stand in support of pre-born children, we take no particular position on the use of technologies in discovering disability among the pre-born. Even amongst the parents of the current Disability Ministry, different couples chose different routes. . . In both cases, the children were going to join their families as God allowed, regardless of what was known or not known. (Horning, Horning and Knight, p. 8 )
On the question about the life and worth of the pre-born child with a disability we were all in absolute agreement: let the child live. After that, the choices are not quite so clear.
Discovering disability before birth is just one of several questions that could easily divide us within the disability community. We are bombarded with choices in therapies, nutrition, medication, educational programs, and emerging technologies. And our children all respond differently, even when they have similar diagnoses.
But in looking for an answer for our child or children with disabilities, we can become ferocious even with (or possibly especially with) those who share some commonality with us. The tone of voice may be calm and even, but the words used might be shouting:
You must do this for the sake of your child! How can you possibly make a different choice than I am making!! You don’t care about your child!!!
Ironically, this was probably a greater problem during Dianne’s treatment with her cancer than it has been in our situation for Paul. Lots of people, including some who felt the need to come into my own home, had opinions about what treatments she ‘should’ be getting. I’m still sorry I didn’t throw one couple out of my house and gotten the elders involved with church discipline!
Oh how we need God to help us to serve each other with wisdom and kindness!
Of course, sometimes we need to speak up and challenge other parents in the decisions they are making. But I find that this is rarely necessary, especially after they have dealt with disability for a few years. If I remember to just listen from beginning to end, and ask a few questions to help me understand, usually I can see the logic a parent is applying – and that my first impression to jump in and ‘save the day’ would not only not have been welcome, it would also have been wrong.
In the end, we are all fallible. I know my son better than you do, but I don’t know him like God does. And he has promised to help us:
fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand. Isaiah 41:10
And I believe that means he will help us – no matter the question. When we see a brother or sister doing something for their child with a disability, something that we disagree is right or effective, we should first go to God and ask for his help and for his wisdom and for a clean heart. And then we go to that brother or sister in love, ready to serve, mindful that God alone is God.
I’m praying that I can behave more like this and that we can all be known for this:
Therefore encourage one another and build one another up, just as you are doing. 1 Thessalonians 5:11