30-year-old Misty Cargill died in her sleep this past Saturday. Her family, her boyfriend, Mike Bishop, and a crowd of friends filled the Chisholm Trail Church of Christ in Duncan, Oklahoma, on Tuesday. Cargill, who had a mild intellectual disability, had lived a quiet life, working at a factory packing meters for the oil fields, going to church and playing in a bowling league. She found herself an unlikely disability rights advocate in 2006 when she was turned down for a kidney transplant on the basis on her disability.
In 2006, Oklahoma University Medical Center in Oklahoma City refused her the transplant because a “woman with a mild intellectual disability did not have the mental competency to make an informed decision to choose a transplant.”
Yes, that is what Cargill was told.
NPR’s Joseph Shapiro reported on Cargill’s story in 2006 and many, many, were outraged. A hospital in Galveston, Texas, offered to put her on its list for a transplant and no one less than the chairman of the Special Olympics, Tim Shriver, wrote an op-ed in the Washington Post on Christmas day. “Someone determines that people with intellectual disabilities are inferior, human beings of lesser value, the last priority,” Shriver wrote; Cargill had been refused because she was “thought not to matter quite as much as other people.”
Shriver’s words expressed the ugly truth about how people really think about individuals with intellectual and cognitive disabilities. Shapiro also found that
…about 60 percent of transplant centers reported they’d have serious reservations about giving a kidney to someone with a mild to moderate intellectual disability. Kidneys are in short supply and doctors must determine who is most likely to thrive with one. Often medical professionals figure that someone with an intellectual disability will not be capable of doing things like faithfully taking all the medications required for a lifetime after receiving a transplant.
Shapiro discovered that just the reverse is the case after speaking to Steven Reiss, a professor of psychology at Ohio State University. Reiss’s research found that “when people with intellectual disabilities get transplants, they have results just as good, or better, than anyone else,” in part because their medical care is overseen by staff who take them to doctor’s appointments and make sure they take their medications.
Cargill’s kidney function improved and for a time she no longer needed the transplant. After her health declined again, she was again in need of a transplant and was placed on another Oklahoma hospital’s waiting list.
What if she had gotten the first transplant, or had not have had to go through the stress of being refused it?
Earlier this year, the Philadelphia Children’s Hospital at first refused to give 2-year-old Amelia, who has Wolf-Hirschorn Syndrome, a kidney transplant because of her disabilities. After parents of children with disabilities and disability right advocates raised a huge outcry, the hospital said it would reconsider.
But as both Amelia’s and Missy Cargill’s experience show, people with intellectual and other disabilities are too often not seen as “qualifying” for access to medical care that is their basic human right. Please sign the petition and tell organ transplant centers that they cannot discriminate against individuals with disabilities.
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