On January 13 a post entitled Brick Walls at Wolfhirschhorn.org caused a media frenzy. I wrote about this as did many others devoted to disability rights. The story puzzled me from its inception. Organ transplants are rationed and people die waiting for organs. I knew that disability bias exists when deciding who does and does not get a transplant. I accept this as a given. I assume if I ever needed a transplant I would be denied based on the mere fact I am paralyzed. Yet people seemed shocked when a CHOP denied a cognitively disabled child an kidney. The denial was based on her quality of life and cognitive ability. In my estimation, the only thing that was different about the Rivera case was how blunt the doctors were with the parents. The subsequent uproar and firestorm across disability related blogs is a sign of just how fast news can travel. Thus the Rivera case differs in one key way from Sandra Jensen circa 1995. A supposed resolution with the hospital has quickly been reached.
My depressing take on the Rivera case is that one child will benefit. Once the media attention wanes, and it has already waned, hospitals and transplant teams will quietly go back to business as usual. Nothing has changed--disability bias does not go away overnight. It is alive and well in hospitals across this country. I have no doubt CHOP will institute new policies--those policies will not change the decision making process but rather make the language it uses more palatable. Much lip service will be given to disability rights. My gloomy assessment diverges from the latest post at wolfhirschorn.org entitled "A Life Changing Event..for the Greater Population". I quote:
"The power of social media continues to thrive. The experience of this story going viral is a unique event that we are likely to be a part of only once in a lifetime. As the story continues to buzz, it is quickly moving into a political and public forum. Senator Sweeney from New Jersey has already pushed forward action on transplant rights for the disabled, and CHOP has made contact with the state to address this matter. The wheels are in motion for change at a larger scale.
The outcome of Chrissy posting her article will likely end up with the best possible solution for Mia. Mia will get the best treatment available, whether it is at CHOP or another hospital. In addition to Mia receiving the best of care, rights for the disabled will continue to gain steam and recognition. Discrimination against our kids needs to be addressed and maybe this is just what we needed to see happen.
The success of this event can’t go forward without recognizing our community as a whole. Because of all the contributors, parents, wolfhirschhorn.org followers and advocates of our kids, this wave would never have happened. Thanks to all of you for being a part of a building trend to give our kids the stage they deserve.
And finally, check out some of the vitals of the story…they are quite amazing:
Average site traffic per day, 3 weeks before the article went viral: 165 visits/day
Total site traffic since the article was posted 2 weeks ago: 387,000 visits
Largest source of referrals on the day the story went viral: 91% from Facebook, 2% from Change.org".
No doubt social media played a key role in the Rivera case. And there is no doubt the outcome for the child in question is far more positive than it would have been without the national attention. But I do not share the belief that larger scale changes will take place any time soon. The decision and process involved in who receives an organ is inherently flawed and biased. We can only do our best to minimize the bias. This decision making process is complex, nationwide in scope; political, social and economic variables all come into play. To suggest otherwise is simply naive. Organs are rationed--this is a fact. When it comes to rationing I have no doubt people with a disability will be at the bottom of the priority list. This is a social reality that has not changed measurably in my life time. Perhaps I am just cranky. This winter has been a disaster. Warm temperatures and no snow have left me frustrated in the extreme. Then again, I am a realist. I have experienced the brunt of prejudice for 34 years. I do not think disability bias will disappear because people flocked to Facebook and signed an on line petition.
6 comments:
I agree. And I say this because of an ongoing "discussion" that some of us have been having since the Rivera case with a certain young woman in Nantucket who insists on talking about personhood, non-personhood and humans -- with no regard whatsoever to nearly anything other than empty theory and concept. It's frightening and profoundly depressing -- in fact, I've stopped discussing it because I'm exhausted.
My dad told me the other day that he has actually decided to never donate organs because of the income bias in the system... I don't get along great with my parents but when he says things like that I do appreciate it.
I definitely agree with this post, and re: Elizabeth, I was recently re-reading a lot of posts and comment threads from the Ashley X debacle and am incredibly frustrated with these abstract empty theories of personhood....I'm (not) sorry, but if someone has a cerebral cortex, regardless of impairment, it's been demonstrated beyond a doubt to me that they have an inner life and that's enough for personhood and moral status for me. (But I'm not into universal definitions, personally.)
It nauseates me so much when people act like that woman in Nantucket you mentioned.
The Nazis classified Jews & Gypsies as “non-people” & had a much higher regard for animals than for anyone they deemed “subhuman” or a “non-person”. Sound like any famous so-called “bioethicists”? Does anyone else find that term distinctly Orwellian?
Bill, don't be too downcast- things are changing! The Iowa Legislature just banned the use of word “retard”, & that news made the front page of the Des Moines Register, our largest newspaper, above the fold. A spokesperson for the Legislature said that the word is offensive to people with intellectual disabilities & goes against their ideas for an open, inclusive & welcoming state.
I am happy that the power of the net may have enabled one child to be considered to have a life worthy of life because of the unity of the disability community. I am happy we joined to confront am arrogant young woman espousing and misusing Warren's writings and applying them to disabled people.
I am not encouraged in our pursuit to convince people that the disabled have lives worth living; that most are happy and thriving; that new ways of managing symptoms make lives better. Many people believe that disability is a social stigma, a social and familial burden and a leave people with a "non person human" designation. Why? The data is there: 80-90% of fetuses who have been screened by genetic testing are aborted; 95% screened for cystic fibrosis are aborted; few children with spina bifida and anencephaly are born today. Tay-Sachs births are vitually eliminated. There is a direct and increasing correlation between eugenic abortion and pre-natal screening for disability. Doctors have stopped keeping data and are secretive. Society, on the large scale, believes that disability is a very bad thing, even though testing cannot predict severity of the disability. My reason for pessimism...old beliefs still have a tenacious hold on many, many people.
http://www.seattlepi.com/local/opinion/article/The-abortion-debate-that-wasn-t-1178454.php
Much of the discussion does not address the crux of that case which is that the parent states that the child was not to even be considered for transplant because of cognitive disabilities.
Certain disabilities do disadvantage an organ transplant candidate. A dear friend of mine has a daughter who was on the transplant list, and then off of it because her condition deteriorated to a point where she was not eligible. It's a delicate balance of being sick enough to move up the list and not being so sick that you are no longer eligible.
If you, or anyone who is paralyzed or has another sort of disability that is not directly addressed by transplant criterion, is deemed ineligible, I hope that goes viral and any medical center or person who makes such a determination is put on the spot.
Elizabeth, I have followed the "discussion" with woman you refer to. I have not had the stomach to participate. I doubt she can be swayed one way or another. I found articles on mainstream media outlets prompted hopelessly bigoted comments. Sadly, these comments are to me a true indication how people view cognitive disability.
EricJ, Without outstanding insurance organ transplants are not possible. So, yes, there is a pronounced economic bias. I also agree the discussions of personhood that arose with the growth attenuation of Ashley X are reflected in the Rivera case.
Cait, Sorry I do not share your optimism. I see no social change in the gritty Northeast, especially New York and more specifically New York City where Mayor Bloomberg regularly assaults the rights of people with a disability.
Phil, We are on the same page. The stats you site are depressing and a good indication of a modern form of Eugenics.
Catherine, In 2010 I had part of my urethra reconstructed. Months later a rider was added to my health insurance policy that deemed me ineligible for a kidney transplant (many other procedures were also listed on a 20 page document). I have no doubt this was a direct result of my surgery and concern I could develop a need for a new kidney.
Multiple arguments could be made to deny a person with a disability a transplant. Some reasons are valid while others reveal ingrained social bias. But the general point in a system that has far too few organs the odds of any person with a disability getting an organ are remote.
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