That ABR post will have to wait another day or two because today I’m mad as hell and I’m resorting to my favorite therapy–blogging.
By now, you have probably heard about a little girl named Amelia who was denied a life-saving transplant (from a family donor) because has been diagnosed “mentally retarded.” If you haven’t heard the story, you can read her mother’s own words here although sadly, my description sums up most of it. The doctor’s reason behind denying the transplant was that Amelia had a poor quality of life.
There were a hundred things racing through my mind as I read this story–fear, disbelief, disgust–but the quality of life thing is what sticks in my craw. I am sick to death of other people looking at my child, or any child with disabilities, and determining what the “quality” of his life is. My son cannot walk or talk, but he smiles every day. He laughs easily. Throws temper tantrums like many four-year-olds, and he likes toys, television, and his iPad. He adores music and can recognize a song within a few notes and could from an incredibly young age. I began teaching him to read this summer, shortly before his fourth birthday, and I am slowly adding words to his vocabulary (in between bedrest, having babies, therapy, school, dinner, cleaning, and getting pregnant again).
He is LOVED. When Charlie was born sick and in the hospital, I felt like the whole world was praying for him. For four years he was the only child and the only grandchild on both sides of the family. He is doted upon and spoiled more than he should be–for crying out loud, I don’t have an iPad! At school he is greeted by a multitude of adults and children who have taken him into their hearts–at recess they actually have to shoo children away because a crowd gathers around him. Other students watch for him each morning to make sure he’s arrived on the school bus.
His life is RICH. Charlie has traveled internationally. He’s been to Disney World. He’s put his toes in the sand in Florida and chomped on chips and salsa in Texas. He’s eaten in some of New Orleans’ finest restaurants. He goes to outdoor concerts, rides horses, has his own TV, DVD player, and the aforementioned iPad. He has a bureau full of clothes, and ones waiting for him when grows into the next size. He has cuter shoes than I do. He has so many toys that we still have some in boxes waiting to be opened.
He is CARED FOR. His father and I talk regularly about his future. We think about where he will live as an adult. We have plans for how our house will be remodeled to suit him in the coming years. We have life insurance should we pass away too early to carry out all of our plans. We have also been blessed with two other children and have a fourth on the way. We hope that they will help to care for Charlie when he is older–if he should need their help.
For years I taught children with a poor quality of life. These children could walk and talk like everyone else–they could read out loud and solve math problems.
But their lives were full of violence, loss, and poverty. I taught children who were all to familiar with drive-bys. I taught children who were freezing in their beds at night and then falling asleep in school the next day. I worked with girls who passed out in the hallways at school from malnutrition. I met children who would go days without seeing their parents. And those whose mothers forced them into gangs before they even started high school. I stood in houses with no beds and rat poison lining the rooms. I knew far too many children whose parents were children themselves.
THAT is a poor quality of life–not the inability to walk when the world is full of people willing to carry you. It is not the inability to speak when there’s an army there to advocate on your behalf.
The quality of life issue is just an excuse. It’s something people tell themselves when they do something abhorrent to people who can’t defend themselves. It’s a balm people allow to ease the pain of what they know is discrimination. It’s a falsehood and it’s time for it to stop.
My child’s life is beautiful.
My child’s life is valuable.
His worth cannot be measured.
I know I am not alone in my beliefs. Sunday Stilwell has put together a petition urging CHoP to reconsider their decision to not grant Amelia her life-saving transplant. You can sign that here. You can also let CHoP know how you feel on their Facebook page. The most important thing you can do (in my opinion) is let people know how you feel about this story. People with disabilities deserve the same medical treatment as everyone else. It’s time to speak up.
