That verse in the title, found in John 9:41, came to mind as I read one of the comments attached to Amy Julia Becker’s blog posting on why she declined prenatal testing for her third pregnancy.
Happily, the vast majority of comments were positive, including several similar stories of good decisions women made to let their babies live. A couple of dads even weighed in.
A genetic counselor, however, wrote a comment on his or her sorrow at how prenatal testing was presented. What grabbed me was this statement:
No judgement (sic), no pushing- that’s how my appointments work. I mainly want patients to feel comfortable and informed, no matter what they choose.
No matter what they choose?
It sounds all very soothing and helpful and reasonable. How often is this comfortable ‘choose what is right for you’ given as the final answer.
That ‘choice’ statement would be nonsense even if people considered disability to be normal. But we know the direction of the culture is against our children with disabilities.
And no matter how prepared a parent is, this issue is never neutral. Disability frightens people. There is no safe space where ‘non-judgmental’ conversations exchanging objective information can happen.
What children (and their parents) really need are advocates, not professionals who will make parents feel comfortable about whatever decision the parents make. I’m good enough at self-justification to not even need that kind of ‘counsel’.
Hopefully you’ve read enough on this blog to know we live in the real world of hurt and loneliness and financial difficulty associated with disability. There are no romantic notions here about disability being easy. We live with an entirely different framework than the culture, however, knowing that God is sovereign over all things and has promised to help us.
And, frankly, this counselor is disingenuous. The desire to help people feel comfortable with any decision means that the counselor is comfortable with the idea of aborting a little human being on the basis of disability. I am not comfortable with that, and don’t ever want to be comfortable with that, and I don’t want anyone else thinking it is ok to be comfortable with that decision.
Embracing this notion of choice also validates the idea that we are god, entirely able to make whatever decision we want to concerning a human being who is entirely defenseless.
If we claim this kind of sovereignty over our own lives (and little babies’ lives) and attempt to justify ourselves before God, there is nothing standing between us and the righteous wrath of God.
But, we can have full confidence that every sin, including aborting or encouraging the abortion of a child with a disability, is completely covered by what Jesus did for us in obedience to the Father at the cross. When God calls and gives us faith, we are entirely clothed in the righteousness of Jesus. And that allows us to live a different kind of life entirely, under his good care.
After all, it is God alone who makes these bold statements about his sovereignty over disability:
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
Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” John 9:3
And we have clear instructions from God about how to think about those who are weaker:
The eye cannot say to the hand, “I have no need of you,” nor again the head to the feet, “I have no need of you.” On the contrary, the parts of the body that seem to be weaker are indispensable, and on those parts of the body that we think less honorable we bestow the greater honor, and our unpresentable parts are treated with greater modesty, which our more presentable parts do not require. But God has so composed the body, giving greater honor to the part that lacked it, that there may be no division in the body, but that the members may have the same care for one another. If one member suffers, all suffer together; if one member is honored, all rejoice together. 1 Corinthians 12:21-26
And God alone will have the final say:
For we know him who said, “Vengeance is mine; I will repay.” And again, “The Lord will judge his people.” It is a fearful thing to fall into the hands of the living God. Hebrews 10:30-31
So let us never put on a neutral tone regarding the choices people face with their unborn children with disabilities. Let us remind counselors that their duty is to actively counsel against bad decisions, not justify every decision. Parents need to know the truth about the good and the bad in raising a child with a disability, be offered ideas for dealing with issues, and receive support in their deepest moments of grief – so that the child is allowed to live.
We can do this boldly in the midst of another’s deepest pain and confusion because we have a promise no secular counselor can ever offer, and it is one we can bank everything on:
And my God will supply every need of yours according to his riches in glory in Christ Jesus. Philippians 4:19
The Works of God 
Amen!
This post is very timely for me. We have just completed a special needs adoption, and have had our beautiful little girl with us for 2 days now.
This very issue of choice was never put to the test more in my life then the past year in this adoption process. We were constantly asked for our preferences, as well as what disabilities we would accept (as if we would have had or wanted a choice with our biological children). We attempted to be as open as possible with what we would accept, and let God bring about what he had planned.
I was very impacted by a statement that our social worker made a few days ago: “There is a distinct difference between a family that is truly accepting, and one that is weighing the risks.”
I was impacted by another similarity (although a sad one) of building family biologically and through adoption. This is the fact that many are weighing the risks, and not considering the benefits of disability.
I am so thankful that God is not weighing the risks with his adoption of me in my disabled sinful condition.
Jason
Jason,
As an adoptive parent, I would like to congratulate your family on the addition of your sweet little girl. We have two (and hopefully very soon a third) children through adoption. Our son was adopted at birth and while we made our “preferences” known, God had other plans and we could not turn our back on that. Our son is now 8 and has just been diagnosed with Childhood Disintegrative Disorder, which is a rare form of Autism. We have been searching for answers for him since he was 15 months old. Now we have a situation where his white blood cell count is low and we are waiting to hear from a blood specialist to see what our next steps are.
With respect to our hopeful third child, he is our foster child and we have been told that he will probably be receiving a diagnosis of Cerebral Palsey. We have told the agency that we are interested in adopting him. Some people can’t understand that. However, we know that God’s Will is bigger than our own.
I love your statement, “I am so thankful that God is not weighing the risks with his adoption of me in my disabled sinful condition.”
Many blessings to you and your family!
Cassandra
Cassandra,
Thank you for your kind words and encouragement on our adoption.
We have 3 older biological children, all of which are autistic. I can relate to the searching for answers, as we went through a similar time, although ours was much shorter.
I can also relate to others being confused by the desire to adopt a special needs child. As my wife and I have experienced much of the same reaction.
Giving us our three older children is what God used in our lives to help us to see God’s good design in disability (I love the phrase – thanks Krista!)
We will pray that you get the answers that you need to best care for you son, and that God uses this time in your family to reveal more of Himself, as he has/is in ours.
Jason
“Let us remind counselors that their duty is to actively counsel against bad decisions, not justify every decision.”
I understand that it is your personal opinion that you are against stopping a pregnancy when there is a diagnosis of a genetic condition.
Not all individuals share the same opinion as you, not all individuals feel the same way about having a child with a disability as you, not all individuals are in a situation where they have the economic resources available to them to pay for the medical care or where they have the medical facilities close by to properly care for the child. Not all families have the ability to properly care for or provide a supportive environment for such a child.
Genetic counselors are trained to provide non-directive, supportive counseling to all of our patients. We do not judge where they come from, how they feel, or the choices they make. Nor should we. I completely disagree with your believe that it is our duty to actively counsel against bad decisions. It is most certainly NOT our duty to provide any active counseling and it is only your opinion that such a decision is a bad one.
“And, frankly, this counselor is disingenuous. The desire to help people feel comfortable with any decision means that the counselor is comfortable with the idea of aborting a little human being on the basis of disability. I am not comfortable with that, and don’t ever want to be comfortable with that, and I don’t want anyone else thinking it is ok to be comfortable with that decision.”
I also believe the bible says ‘judge not lest ye be judged’. In the above paragraph you are casting judgment against a counselor for being open minded, for NOT judging a patient. In a land of freedom of speech, freedom of ideas, and freedom of religion it seems disingenuous that you cast such a judgment and expect that all genetic counselors do the same.
Ms. Julia wrote a blog about having freedom of choice in a land where many doctors are too quick to be directive and to judge patients for not making the choice they would make. In the end, you are not at all in line with the freedom of choice that Ms. Julia speaks of, instead what you are advocating is no better than the misinformed doctors who attempt to push their point of view.
John,
I read your post today and smiled. Of course, because of my precious Jonathan. I wrote a similar entry on my own blog today after considering for many months the information I was given during my pregnancy with Jonathan. I also read the genetic counselor’s comment to your post. It made me sad for a number of reasons, spiritual and other. With regard to the “other” reasons, if she or he reads this entry I would just ask this: please don’t suggest to an expectant parent that Down Syndrome is something that warrants abortion. But if you must, as you say, to be impartial, or fair, please, please, let these parents know that there are families with children with Down Syndrome that are living life filled with joy, thankfulness and no regrets. Please let them know that while Down Syndrome is not curable, the majority of the accompanying medical conditions are treatable; that public schools are there to help; that parent groups are there to support; that there are a zillion therapists to help out; that…it can be okay…even amazingly wonderful. Encourage them to contact the Minnesota Down Syndrome Association or a family that includes a person with Down Syndrome for more information. My son is one-and-half today and I never received what I would consider to be balanced information from a genetic counselor or physician during my pregnancy here in the Twin Citites. All three genetic counselors and my ob/gyn soberly told me the abortion deadlines. I was never offered any facts about Down Syndrome. Jonathan is a delight – no one suggested that possibility to me when I was pregnant. No one suggested that joy could be an option for our family. That would have been a blessing and a valuable piece of information.
Jill,
I am not certain why you are sad to read my reply. My reply may have seemed one sided but instead it is the counterpoint to a very one sided argument. My reply stresses allowing a couple to make a decision that is best for them and, yes, that should be based on balanced information.
Having said that, there are many couples who come in having already made a decision. For a couple who has decided they do not want to have a child with Down syndrome, discussing the variability of the condition with this couple may make them feel as though the counselor is pushing for them to keep the baby. Whereas, explaining the option and timing of stopping a pregnancy to a couple that is completely against that option may make them feel as though this counselor is pushing their side. What may appear to be balanced from the counselor, may seemed biased and opinionated by the couple.
I also think that genetic counselors need to take cues from the people who receive our services. When a couple comes in and starts off by saying that they for sure want to keep the child, what duty do I have to be balanced to discuss the option of stopping the pregnancy? What if I didn’t and this couple came back many weeks later saying they had changed their minds, would I not be negligent in the information I provided? But at the same time, I don’t want the couple to feel that I am pushing my own agenda on to them. Along the same lines, for a couple who says they do not want a child with a particular condition, how far should one counselor go to present the spectrum that this child may have? Presenting information that a couple does not want to hear is often considered unbalanced.
I don’t know how many times an expectant parent has been heard to say, “I just want a healthy baby”. Many couples have preconceived notions about what these conditions are and, perhaps, more awareness needs to be presented to the general population prior to any screening or diagnostic tests. In the end, a genetic counselor can be as balanced in presenting all the facts but if a couple already has their own idea of what this baby’s mental capacity, physical limitations, and medical problems are likely to be, no amount of information is likely to change the decision a couple has already came in with.
Genetic counselors shouldn’t shy away from these discussions. I have my opinions, I have met with couples who have opinions similar to and differing from mine. I respect all of these opinions as people are making very personal decisions that have large effects on their own lives. For me or anyone else to insert their opinion or judgment is wrong, as others would have to live with a choice that was not their own.
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