1.  On Saturday night, I posted this petition on my Facebook page.  Sunday Stilwell started it in support of Mia Rivera, a 3-year-old who, according to her mother Chrissy, was denied a kidney transplant at the Children's Hospital of Philadelphia because of her cognitive capacity:

The doctor begins to talk and I listen intently on what he is saying. He has a Peruvian accent and is small, with brown hair, a mustache and is about sixty five years old. He gets about four sentences out ( I think it is an introduction) and places two sheets of paper on the table. I can’t take my eyes off the paper. I am afraid to look over at Joe because I suddenly know where the conversation is headed. In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, “Mentally Retarded” in cotton candy pink right under Hepatitis C. Paper number two has the phrase, “Brain Damage” in the same pink right under HIV. I remind myself to focus and look back at the doctor. I am still smiling.

Sunday's petition and additional pressure from the online parent community has had the necessary effect in this particular case:

All the attention appears to have had an impact: Chrissy Rivera said Monday that she and her husband have been invited back to the hospital to discuss a transplant.

Hospital officials also have posted three responses on Facebook. The first, posted Friday, said, in part: "Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities. … We make all decisions regarding eligibility using a non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country."

The second, put up Monday morning, said: "We hear you. We feel and understand your frustration, but we are unable to comment publicly on individual cases."

However, Mia's situation is not unusual, as Jennifer at Teaching the Boy explains.  She spent hours researching attitudes in the medical community toward transplants for people with intellectual disabilities and what she found out kept her up at night:

1. There are people who believe individuals with lower than normal IQs do not have the right to life-saving medical procedures involving organ transplantation.

 

2. There are people who believe individuals with lower than normal IQs have the right to life-saving medical procedures involving organ transplantation if there is an organ available from the family.

 

3. There are people who believe individuals with lower than normal IQs do not have the right to a spot on a waiting list for a compatible organ donor.

 

4. There are people who believe that my son, along with the other 100+ individuals I know who have intellectual disabilities are not entitled to a life-saving organ transplant under any circumstances.

 

5. People with intellectual disabilities around the world have little to no access to life-saving organ transplants.

2.  Lisa Belkin at The Huffington Post proudly exemplifies these negative attitudes.  She argues that Mia's doctors should not be faulted-- the lack of appropriate organs should be:

I do not think Amelia should be put on the waiting list for a transplant.

Kidneys, all human organs, are among the rarest and most precious of the world's resources. The National Kidney Foundation tells us that 104,748 people are currently waiting for a transplant of some kind right now and 4000 names are added to that list each month. Today -- every single day -- 18 people will die while waiting. Each of those patients is someone's child.

The stark reality then, is that a kidney that goes to one patient means it does not go to another. Giving a kidney to Amelia means that someone, whose name you will probably never know, but who will be loved just as fiercely as Amelia is, won't get one in time.

Which is why there are rules -- unemotional, clinical, detached rules -- for a situation that is none of those things. And it is why there are forms like the ones placed in front of Amelia's parents. Amelia is not being denied a donor transplant because she is, as her mother writes, "mentally retarded." She is being denied a donor transplant because she has a cascading syndrome that will shorten and limit her life, meaning that kidney will not "save" her in the way that it might someone who starts out healthier. In cold clinical terms this means that everything it takes to undergo a transplant -- the medications, the repeated biopsy procedures afterwards, the constant monitoring and machinery -- are difficult and sometimes impossible compared with a child who is less impaired. The less mobile a patient is, the far greater the likelihood that she will develop an infection, or pneumonia, or a host of other complications that make it probable that the transplant will eventually fail. Which, in those same cold clinical terms, would make it a waste of an organ.

In a world with unlimited organs it would be reprehensible to deny anyone a transplant because of her limited lifespan, her limited understanding, or her inability to go on to lead a life as full as some other child might. But organs are not unlimited, and there is no way around these choices. It is a most imperfect and wrenching system. It is inexact and capricious. It brings me to tears as I write about it. But it is the best way we have at the moment.

What does not occur to Belkin is the idea that maybe Mia's life could have as much value as that of someone with a longer lifespan and typical cognitive processes.  She accepts, apparently without a moment's reflection, the idea that since organ transplants are limited, they need to go to people like her instead of people like Mia.

She makes specious but intimidating use of an authority figure.  Mia has Wolf-Hirschhorn Syndrome, so Belkin calls her husband's mentor, Kurt Hirschhorn, who helped identify the syndrome and for whom it is named.  He shares the writer's opinion that the girl should not be on the national organ registry.  His opinion is relevant in terms in his understanding of her physical condition, but it does not give him any insight into her value as a human being.  Anyone autistic who has spent five minutes listening to the way researchers talk about us understands that they tend to look at us not as people, but as objects.  They are experts on some element of our bodies or behaviors, but are both ignorant and apathetic regarding our humanity and our worth.

The piece is also intellectually dishonest.  Most of it is about how she thinks Mia should not be put on the national organ registry, even though Belkin eventually acknowledges that that is not what her parents were asking for and not what the uproar has been about.  Mia's family were told that they were not allowed to donate a kidney to her-- that's what the meeting was supposed to deal with.  To pretend that it was about the registry is an attempt to make biased and heartless behavior seem merely clinical and detached.

 Susan Senator sees the situation in distinctly different terms because of her own autistic son:

Society is biased towards the mainstream, even with all the evidence that it is the oddballs, the aberrations, the mutations that give us our uniqueness, and help us progress as a species. And yet the mainstream, the normal, the cookie cutter: that is our standard, and all else needs work -- or worse. In Amelia Rivera's case, it seems that her body's problems don't even rate medical care. In a Saturday, January 14 blogpost from Notdeadyet.com, Disability Activist Stephen Drake points out that even Children's Hospital of Philadelphia's Patient Bill of Rights appears not to apply to Amelia: "Patients and Families have the right to: Receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for care or your ability to pay."

Why doesn't this policy apply to Amelia, a three year old with a serious disability? Isn't this hypocrisy? Veiled in calculations of life expectancy and quality of life projections is the underlying fact that organs in America are scarce, and that therefore there has to be some way to choose who lives and who dies. But next to that very same fact is the way our society is taken for granted that disability equals inferior. No matter what we say, this is how we act, for the most part. We have the Americans with Disabilities Act, yet employers continue to deny work to the disabled. According to an August 2011 article in Forbes, "Americans with disabilities are experiencing a jobless rate more than 80 percent higher than the rest of Americans, who are currently at 9.2 percent." We have the Individuals with Disabilities Education Act, and yet we have to drag Congress and state legislatures kicking and screaming to get the funding for special education programs. We say we want all people to be equal, but do we act that way when it comes to disability?