"In the End, we will remember not the words of our enemies, but the silence of our friends." - Martin Luther King, Jr.
There is a girl named Amelia who lives near Philadelphia and will need a kidney transplant later this year. But she may not get it. This is not a story about the difficulty of finding a match. Her family will donate the needed kidney. This story is different and more upsetting. She is being denied the transplant surgery she needs simply because she has intellectual disabilities. Doctors are denying her the transplant because of her “quality of life.”
If you have not figured it out before from reading this blog, take note: There is a very strong bias against the disabled in the medical world. This bias is generally found hiding behind the phrase “quality of life.” As soon as I hear a doctor mention Maggie’s quality of life, I start looking for the door.
Western medicine wants to “cure” illness and disease, but disability cannot be “fixed” by the curative model and it is therefore problematic to many doctors. (Not all doctors, of course.) Disability is not an illness or a disease, though. It is a reality; it comes in all shapes and sizes and it affects people without regard to race, gender, or socioeconomic status. It is true, some people with disabilities lead terrible painful lives; but others lead wonderful full lives and have adapted to the disability. The quality of their lives is quite good, despite or even because of thedisability. This is difficult for doctors who have the bias to understand and yet these very individuals are often in the position of deciding who lives and who dies.
The story about Amelia is a difficult story for me because it triggered so many things that happened with Maggie last year. Maggie, of course, is a different story because she is so very medically complicated in addition to her disabilities. Doctors have legitimate medical reasons for declining some treatments on her. Sometimes, though, legitimate reasons are used as smoke screens to cover the underlying bias and I have to delve a little deeper to find out.
Last year Maggie needed a very complex surgery, which she might not survive. Neither Steve nor I were interested in putting Maggie through that and looked for a less invasive alternative. The surgeon refused to do the complex surgery, which we understood, and told us there was no less invasive alternative available. I had already spoken with other doctors and knew the possibilities. I simply did not believe him.
I asked a hypothetical and said, Ok, what if Maggie had a less complicated issue and needed a simpler surgery. (I used a specific example – one that I knew would present no problem for Maggie.) He said NO. “She is no longer a candidate for any surgery because she is too compromised.” The smoke screen cleared. I knew then that this was not about Maggie’s medical issues at all, but about her “quality of life.” Then, just to underscore the reality, he said, “You didn’t expect her to live forever, did you?”
Well, no doctor, I suppose I did not. But I do expect her to get the same chance as other people. Oh and by the way, you are talking about my daughter.
Lest you think I am delusional, let me assure you I fully understand how compromised Maggie is. I understand the dangers and live with them every minute of every day. I also understand when someone is writing off my daughter because he does not think she is “worth” saving. We went to other surgeons who did the less invasive alternative. It was simple, but we cannot be sure it worked. We are back to waiting and hoping, but at least we know Maggie got the chance she deserved.
I hope Amelia in Philadelphia gets her chance.
You can read her story here and if you are interested sign the petition at change.org to get the hospital to reverse its decision.
