wrongful or blessed?

recently there’s been a lot in the news about “wrongful birth” lawsuits in which parents are suing doctors because their babies are born with undetected disabilities.  the parents are winning millions of dollars for the ongoing care of their children, saying that they would have aborted the baby had they known about the disabilities.  the most recent such lawsuit really got my attention…in spite of a battery of prenatal tests, this particular couple did not know of their child’s Down syndrome until she was born.  they were awarded $3 million.  another mother in florida, whose son was born with one leg and no arms, was awarded $4.5 million–half of what she sued for.  both of these couples, and others with similar stories, say they would have aborted their babies.

when i lived in uganda and witnessed first-hand the discrimination against children and individuals with disabilities, i was sickened and compelled to action because of the horrible injustice of it.  it made me so sad to see how their culture viewed people with disabilities and how badly these individuals were marginalized, through no fault of their own.  i had worked with children with disabilities in america, and i always thought our country was getting a lot better about practicing inclusion…from the Americans with Disabilities Act to the Individuals with Disabilities in Education Act (IDEA), children with disabilities are provided with access to various therapies and have the right to a public education until the age of 21.  so, as a special education teacher, i assumed we were on the right track.  and in many ways, people with disabilities are celebrated and “recognized” as a form of cultural diversity.

unfortunately, our culture is also very success driven, and any disabling condition is viewed as an obstacle to true success and achievement.  really, we are no better than so many developing countries who are locking up their children with disabilities or abandoning them on the streets.  the big difference: for many americans, it is now a perfectly viable option to terminate a pregnancy if the unborn baby is thought to have a disability.  it is unbelievably sad…and statistics are shocking.  some countries are promoting free prenatal screening, which has lead to a drastic decline of babies born with disabilities.  several countries are even predicting a total elimination of certain types of disabilities.  already in the US, around half of babies with Down syndrome are aborted, and that number is steadily increasing.  as a society, we are horrified by parents wanting to abort based on gender, but support abortion based on an extra chromosome or other disabilities. people are assuming that life with disability is not worth living.  therefore the birth is considered “wrongful.”

this is not a new problem, it’s just taking a different form from what we have seen throughout history.  tragically, many cultures have shunned, excluded, locked away, and even killed children with disabilities.  they have been ignored and isolated.  they are seen as a burden, not a blessing.  now, there is even an option to end their lives before they have a chance.  in our culture, with such an advancement in good medical care, education and other support systems for families of children with disabilities, this should not be an option!  we need to stand up against this and help advocate for more acceptance of children with disabilities.

i am sure it is a shock and adjustment for parents to accept that their baby is not the baby they hoped and dreamed for.  it is easy to give in to fear and think that having a child with disabilities will be too difficult to handle or too much of a burden.  but i know that each child is a gift, regardless of their IQ, their abilities, or the way they “fit in” with their peers.  we need these children in our society!  personally, having a child with a disability has enriched my life in ways i never dreamed possible.  i know i had the option to choose whether or not to be Mikisa’s mom, and she already had very obvious disabilities when i made that choice.  but i made that choice and i would do it again.  she is my precious daughter. she is a beautiful gift…a blessing.  we are delighted to be her parents.  she is so unique and wonderful and full of surprises.  and her life is good.

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3 responses to “wrongful or blessed?

  1. Christina…
    Well said. I feel like it is a honor to know you. The world needs more of you….many, many more. God bless you and your precious family.

  2. When I was pregnant with Sarah, my doctor was shocked and appalled when I refused to have “routine” prenatal tests that would have predicted (though not with 100% certainty) whether my unborn child would have Down’s or other genetic abnormalities. I was 29 years old, had no family history or other risk factors for any of those genetic conditions, but I was told that having this test would arm me with knowledge that would enable me to make “wise decisions” about the future. My answer to her was, “I don’t think that will be necessary, unless you think I should paint the nursery a different color for a child with Down’s.” The look on her face was one of total unbelief. She couldn’t fathom that test results “proving” my child to have a genetic abnormality would not have a bearing on my decision to carry the child full-term. This conversation repeated itself 15 months later with a different doctor when I was pregnant with Andrew. Once again, the waiver was signed, stating that I knew the “risk” I was taking by not having the test. It is absolutely heartbreaking. They are children, God’s children, and they deserve to be valued as much as the rest of us. Blessings!

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