Children with Disabilities

I just finished reading Jodi Picoult’s “Handle With Care.”

It was excellent, as are all of her books, and it really caused me to think. As usual.

I won’t give anything away, so don’t worry.

The main premise of the book is a girl who is born with a rare disorder that makes her life very difficult and very painful. Basically her bones break all the time. Very easily. Even just by bumping a table or wall corner. It’s called osteogenisis imperfecta. You can learn more at http://www.oif.org/site/PageServer .

This girl’s mother and father struggle to pay for their child’s health care and more. Mother has to quit her beloved career because she is constantly running from emergency to emergency, and who will employ someone who is constantly having to leave to run their child to the hospital, or stay in the hospital with them, or drive to another city to get treatments?

Anyway, the book brings up the hot topic of abortion in the cases of disabled children.

We now have many screening tools to help us see if our children are healthy before birth. I feel like these tools are very important. A parent who is going to have a disabled child is greatly helped if they can study up, learn what their children will need, and have therapies, specialists, home health needs, etc, ready when the child is born.

Some parents who find out their children will be severely disabled choose to end the pregnancy.

Now, at this time, this is a highly controversial topic in the US. In other countries I know it isn’t. In other countries they used to euthanize children who were born with severe disabilities that could be seen right away. Perhaps they still do some places. I am sure it happened here at some point in our history too, though I doubt it was widely accepted publicly like it has been in some countries. Now in those countries it is common practice to abort. Truly the people in these cultures feel they are saving their children from a life of hardship and pain. We, in the US, have doctors that are willing to abort for reasons such as down’s syndrome, OI (mentioned above) and other permanent disabilities. We also have a large disabled population that resent the implication that their lives are somehow worth less or not as fulfilling as more “able bodied” people’s. There are several groups trying to change the conversation about disabilities in general – pointing out that a “different” life is not necessarily a “lesser life”.  Though in our society, it can be very hard to be disabled or to raise a disabled child. Simply from a “assistance” or “money” stand point it can be draining on parents. Getting money, proper health care, proper therapies, proper rest, etc can be very difficult for parents and they often need to be able to be at home full time.

In Jodi’s book there is some discussion about who gets to decide what life is “worth” living, what “disabilities” are severe and what aren’t. There is a part where the argument is given that perhaps one day we will have the technology to see what the child would look like, what kind of grades they will get, what they IQ might be, what their personality would be like. At what point do we draw the line in deciding what “kind” of child is a child we “have the resources” to take care of?

I think these questions are worthy of thought on everyone’s part.

As I was reading this book I thought of a lot of things. I have known some pretty severely disabled children in my life. Children who will never live on their own. Children who’s parents will be taking care of them, physically and financially for the rest of their lives. Some day if the parent dies first, someone else will have to take care of their child. These parents struggle to take care of the child, but also love them dearly and say they wouldn’t change their lives if they could. I have known some people with “lesser” types of disabilities, people who can live on their own eventually, even if they need help learning certain things, or with certain activities. Again, though it may be a struggle, parents love them and care for them, help them learn, help them find the tools they need.

What about parents who live in severe poverty? I can imagine that a child that is disabled in this situation has it much harder than a child who’s parents can afford therapies, equipment, and such.

My mother worked in special education her whole life. She truly helped people in her district. She helped the students and the parents, and she knew that no matter what the doctors say, the children can surprise you. She learned never to put a child in a box, to always challenge them and let them become what they are able to become, instead of telling them what they can become.

 

Here were a few of my thoughts about this whole topic:

What if we really could see into the future and see what our child would be like? Would we change things if we knew ahead of time they could have a serious mental illness like scizoprenia or  borderline personality disorder? What if we knew in utero that our child might be very low functioning (also known as mentally retarded)? What if we knew they might commit suicide later? What if we knew they would be a true genius as a child? Some parents think those kids are just as difficult and costly to raise. What if they might have a difficult time in school, or will be bad at sports? What if we knew they could become a Ted Bundy? At what point do we draw the line?

(I am not advocating terminating the pregnancy of a person with any of these disabilities, simply having a theoretical discussion.)

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