What can I say to pay tribute to the man who raised me after my mother died when I was 12?
I can remember January 21, 1986 so well. I lived in Arkansas and worked in Fayetteville, their third biggest city. It was a mild winter day. I sat outside at lunch and wrote a letter - a letter! - to an aunt living in Iowa. Went home, took care of my chickens, had supper, and then got the phone call from my aunt who lived in New York City.
He died at a VA Hospital in Brooklyn. My father had served in World War II and had suffered a head injury (traumatic brain injury) that left him suffering from seizures and with some other issues. Like many disabled vets, he faced prejudice and a medical system that did not always work for him. He also built a life, marrying, and fathering a baby girl-me.
He never stopped loving his country, and never stopped trusting the VA. And, to me, he was a good father.
In a way, having a father with a disability prepared me for being the sister in law of a man, my spouse's youngest brother, who is developmentally disabled with a condition called autism.
Thinking about that made me think about a post from my blog, written in 2012.
Was my father less worthy as a person because he had epilepsy? Is my brother in law less worthy because he has autism?
Who Among Us is Worthy?
I know someone who, when a boy, was helped tremendously by Children's Hospital of Philadelphia (CHOP). He had an illness that stumped doctors in this area. His health failing, he was brought to CHOP and they were able to diagnose his illness. He received treatment. He recovered.
He was worthy. Our medical system worked for him. He is an adult today.
And then, there is the case of little Amelia Rivera, who was recently refused a kidney transplant by CHOP because...well, she suffered from Wolf-Hirschhorn Syndrome, a genetic disorder that causes many difficulties for those with it, including intellectual disability. Finding a donor was not a problem (as it is in too many cases of kidney transplant.) CHOP refused to do the transplant because she was, quoting what her parents said the doctor said: "Mentally retarded".
After the mother went public on a support site, the story went viral. In all fairness, we probably do not know the whole story. But, in reading some articles, and comments, and lurking around on CHOP's Facebook page, it would appear that this kind of medical decision is not an isolated instance. From what I can tell, CHOP is rethinking their processes, and are continuing dialog with little Mia's family.
Not that long ago I blogged about nostalgia not being all it's cracked up to be. My father had epilepsy due to a brain injury he suffered in his service during World War II. There was little nostalgia associated with the prejudice he suffered when he came back home. In fact, in some states, I would not have been born because he might have been subject to involuntary sterilization.
So....in our modern day and age people with disabilities are still being denied medical care. Their lives just aren't as valuable as yours or mine.
So what will happen when my brother in law needs medical treatment? Thank heavens that day has not yet come. But will he be deemed worthy? Until recently, insurance discrimination against people with autism was very much a problem, and it is only slowly being addressed by state laws prohibiting such discrimination. Do we need legislation to prevent medical discrimination in care, too?
Some have written a lot more elegantly than me on the issue of the worthiness of Amelia to get this transplant.
If we say we value life, it has to be all life-not just the lives of the smart, the lives of the wealthy, the lives of the beautiful. Our medical system is broken, for this and other reasons. We all have stories to tell from our own experience. Medical bills we can't afford, insurance that won't pay, not having insurance and suffering the consequences. And now....we'd better not be disabled, either.
We must fix it, for many reasons, including the most selfish reason of all. One day that person being denied care may be - you. Or me.
2016 postscript: Amelia's case had a good resolution, incidentally- she finally received the kidney transplant.