Magazine article The Exceptional Parent

The Heart of a Lion, the Eye of an Eagle and the Wisdom to Gift Them. (Editor's Desk)

Magazine article The Exceptional Parent

The Heart of a Lion, the Eye of an Eagle and the Wisdom to Gift Them. (Editor's Desk)

Article excerpt

I love my organs. Sure, with some of them it's more like a love-hate relationship, but I greet them enthusiastically every morning.

Readers of EP know all too much about organs. In fact sometimes I think a better title for this monthly would be EO, Exceptional Organs. Because organs, the way they don't always develop, function, and play nicely with each other, are the soul of this magazine. Readers of EP magazine live and breathe for and because of organs that march to the sound of a different drummer.

In fact, every day, sixteen people die waiting for an organ transplant. There are more than 80,000 people on waiting lists for life-saving critical organs. Hundreds of thousands more would benefit from a life-enhancing tissue replacement, such as skin or cornea transplants. Every year these numbers increase. Every year the number of people willing to donate organs when they die decreases.

I'm not writing to continue clearing the way for persons with disabilities to receive organ and tissue transplants; that frontier has pretty much been fortified. I'm writing to introduce the notion that individuals with developmental disabilities and their families have the right, obligation and wisdom to participate in the national call for people to consider being organ donors.

First, it is a legal right of all citizens to donate their organs and tissues. The Uniform Anatomical Gift Act specifically recognizes this right. All organ donors are evaluated on an individual basis. There is no inherent reason why citizens with developmental disabilities would be unsuitable candidates for organ donation. The only exceptions are those candidates who have extracerebral malignancies or unresolved transmissible infections, such as AIDS or hepatitis B.

When Dr. Chris Prater, my colleague at Orange Grove, and I made inquiries about the possible genetic contraindications to people with developmental disabilities making organ donations (and we communicated with genetics researchers, organ procurement specialists, transplant surgeons and immunologists), no one knew of any. This demonstrates another aspect of the non-personhood status of our population.

There are many reasons why physicians have not been more effective in the arena of organ procurement. Focus groups of doctors have concluded that the barriers to physician involvement include:

* lack of time to discuss organ donation with family;

* tensions between physicians and organ procurement organization staff;

* fear of perceived or actual conflicts of interest;

* unwillingness to address the issue in nonurgent settings;

* inadequate knowledge of regulations and protocols;

* discomfort with the subject; and

* lack of training in recognizing medical futility. …

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