Sunday, December 1, 2013

Doctors Won't Do Transplants For Developmentally Disabled, And A Woman Named Bebe Shows Why That's Wrong

I was disturbed by a CNN report that came out in the past few days about how many doctors won't do organ transplants on people with development disabilities. 
The late, great
Bebe Lopez hugging a
tiger. She hugged everyone.  

The doctors often come up with some other excuse not to do the transplants, but secretly, or not so secretly, according to CNN, the reason is the development disability.

I can understand the dilemna. There are not enough organs ready for transplants for the number of people who need them. Hard choices have to be made. None of the choices are good because somebody will not get a transplant, and die.

But I still have a huge problem with not giving transplants to people with Downs Syndrome or other developmental issues.  One of the reasons I feel this way is a woman named Bebe.

Bebe Lopez passed away a few days before Thanksgiving. I went to her funeral Saturday.

Bebe never needed an organ transplant, but I wonder about the reasons for not giving them to other people with developmental disabilities. Like most people with Down's Syndrome, Bebe never got a PhD, never found a cure for cancer, never broke athletic records, never became President of the United States (which is kind of too bad).

Bebe never became a renouned artist, at least in the traditional sense, never conquered the world.

Or did she conquer the world after all?   And maybe she was a top level artist, too.

Bebe's great friend Rick gave the eulogy at her funeral. Rick started by saying,  "To be Bebe or not to be Bebe, that is the question. The answer is to be Bebe."

Rick was spot on, of course. Everyone who knew her said the lesson she left behind was to be Bebe Lopez. That meant embrace the laughter, perform and sing to your heart's content, be happy, hug a lot, and be brave.

Those are simple rules, and not the kind of stuff you read about when you research History's Greatest Figures.

Bebe loved performing on stage. She loved drawing. Bebe was no Meryl Streep. She probably never would have won an Oscar no matter how long she lived. Her art is not displayed in the Museum of Modern Art in New York.

But boy, did people love her theatrical performances. Boy, did they love her drawings. Mostly because of the exuberance of it all.  Bebe left everybody feeling better just by being there.  As memories of Bebe kept surfacing at the funeral, there was a lot of laughter.

Yep, Bebe left them laughing at a funeral. How many people do you know who can pull that off?

Which is the lesson I go back to on the organ transplants. Is the traditional form of potential greatness the litmus test of who gets an organ transplant and who doesn't?  Do just the people who might be in the news headlines day after day the ones who get the transplants?

Or is the potential greatness we're talking about somebody like Bebe. You can certainly argue Bebe touched and improved as many lives as any uber intelligent academic, scientist, politician or whatnot.

Bebe came to our housewarming party about three years ago. She gave a toy to our dog Jackson as a gift. Jackson, himself a pretty joyous being, still gravitates to that toy frequently, as if knowing of the sunny connection to Bebe and wanting to drink it in.  People always did the same as Jackson, just wanting to drink in Bebe's energy.

My husband Jeff and I wore somber colored clothes, appropriate for a funeral, to the Bebe services. But we also each wore bright red sneakers. The exuberant color and the implied movement and activity of wearing sneakers seemed like the best tribute to Bebe we could come up with.

You see, Bebe added a lot of color to what is otherwise a pretty gray world.

It's not easy to make the rules for who gets transplants and who doesn't.  Since Bebe touched so many lives and made them better, shouldn't people like her get a shot, too?

There's probably quite a few people like Bebe out there. A few of them might need organ transplants.

Just remember. We need more people to be Bebe.

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