Organ Donation and the Black Community.

I was at the most luscious Thanksgiving dinner last eve with some wonderful friends, old and new. At one point I was talking about my two book projects: a book about death in America; and a literary memoir about death grief and travel. Regarding the first, which I've only begun - and begun discussing - I received a comment I didn't expect from an African American lawyer in our company: the black community has long been wary of organ snatching from otherwise viable patients.

Wesley J. Smith, that font of pseudo-ethical "pro-life" banter, has been harping on the invasion of the organ snatchers for some time regarding end of life care and aid in dying. I've always poo-poohed it as hokum. Turns out the issue has legs, or shall I say guts, depending on who you're talking to. (I never cease to be amazed by the fears my white privilege has shielded me from!)

Today I've dug up a couple of interesting facts and studies regarding blacks and minorities and their views of medicine and organ donation. It seems that Smith, the evil genius, may have found yet another thread of fear in society on which to prey.

Here are some spooky myths, debunked by the Life Goes On Organ and Tissue Donation group in Illinois:

Myths About Organ Donation

MYTH: If I am in an accident and the hospital knows that I want to be a donor, the doctors will let me die.

FACT: Donation is not considered until all efforts to save a person have failed. Additionally, transplant surgeons and their staff are, by law, forbidden from taking part in a patient's care prior to organ donation. They only become involved after the person is declared dead and permission has been given by the family for organ donation.

MYTH: Whites are helped more than blacks.

FACT: Absolutely not. In fact, nine out of ten African-Americans who undergo organ transplant surgery receive an organ from a Caucasian donor. In addition, a computer system fairly matches organs with recipients' based on the recipients' time on an organ waiting list, the severity of the recipients' condition, blood type, size of the donated organ and, in some cases, the donor's genetic make-up.

MYTH: Wealthy and famous people are able to buy their way to a higher spot on waiting lists. Take Mickey Mantle for example. A match was found for him within days of being put on the waiting list.

FACT: Anyone who needs an organ transplant is eligible for one, but you cannot buy a higher spot on waiting lists. Mickey Mantle got his transplant so quickly because his blood type was the most common and because he was among the sickest patients waiting in his area.

MYTH: As African-American organ donors, our organs will go to white folks and never other African-Americans.

FACT: If you donate an organ, such as a kidney, for which genetic make-up is a critical factor in transplantation, then it is probable, though not guaranteed, that your organ will go to another African-American. In addition, African-Americans make up 36 percent of those on organ waiting lists in Illinois. Therefore, even if you don't donate an organ that needs to be genetically matched, the recipient may still be an African-American.

MYTH: African-American organ donors aren't necessarily needed.

FACT: African-Americans make up 36 percent of those on waiting lists in Illinois. Everyone on the waiting lists can benefit from more organ donors. However, African-Americans on waiting lists for kidneys will most likely benefit from African-American donors, because transplantation often is enhanced by matching organs between members of the same ethnic and racial groups.

From a 1999 study:

In our recent survey, we found that white persons were significantly more likely than African- American persons to be unequivocally willing to donate their own organs (69.7% compared with 56.3%) and a relative’s organs (43.5% compared with 33.9%). To a surprising degree, this difference reflected concerns of African-American persons about knowing a relative’s wishes before agreeing to donation. Fully 36.3% of African-American persons would agree to donate a relative’s organs if they knew the relative’s wishes beforehand. In fact, if we combine those persons who would be willing to donate unequivocally with those who would do so if that were their family member’s wish, we find that the differences between white and African-American respondents nearly disappear; 73.7% of white re- spondents and 70.2% of African-American respon- dents would donate. Finally, this study found that African-American persons were less likely than white persons to have discussed their wishes about donation with their families (42.4% compared with 58.2%). This may partly explain lower rates of con- sent to donation by African-American families (Siminoff LA. African American perspectives on or- gan donation [Presented paper]. Fourth Interna- tional Society for Organ Donation Congress. 11 July 1997; Washington, DC). The current campaign to encourage persons to talk with their families about organ donation will probably be especially effective.

Or not, depending on the nature of the campaign.

Third, we believe that the negative opinions of African-American persons about cadaveric organ donation reflect a deeper distrust of the medical system. These perceptions are not directed specifi- cally at organ donation and transplantation; rather, they must be seen as part of the distrust that de- velops among persons who have been subjected to institutionalized racism and to a system that may unconsciously continue to reify the racism of the larger society—for example, the African-American experience as medical subjects in the antebellum South and in the Tuskegee Syphilis Study and as victims of exploitation after the Civil War. More- over, a growing number of recent studies have shown that African-American persons are still less likely to receive the full benefits of the health care system (16).

From another study in 2007:

Having been skeptical about organ donation in the past, I was riveted by the original communica- tion entitled “Many Facets of Reluctance: African Americans and the Decision (Not) to Donate Organs.”1 The study participants were 310 adult members of a New Jersey chapter of the NAACP. The results suggested that a decreased knowledge base about lung trans- plantation, a desire to maintain the integrity of the body, lack of trust of the medical community, and spiri- tuality all played a role in the deci- sion to donate organs.

And from the Mayo Clinic regarding the lack of matching donated organs among minority groups:

Being an organ donor can make a big difference, and not just to one person. By donating your organs after you die, you can save or improve as many as 50 lives. And many families who have lost a loved one who became an organ donor say that knowing their loved one helped save other lives helps them cope with their loss.

It's especially important to consider becoming an organ donor if you belong to an ethnic minority. Minorities including African-Americans, Asians and Pacific Islanders, Native Americans and Hispanics are more likely than whites to have certain chronic conditions that affect the kidney, heart, lung, pancreas and liver. Certain blood types are more prevalent in ethnic minority populations. Because matching blood type is necessary for transplants, the need for minority donor organs is especially high.

Remonstrance of the Catholic Right.

Frank Cocozzelli at Talk2Action.org about the Catholic Right taking over the church:

Meanwhile, those of us who are uneasy about reactionary trends in the Church have yet to coalesce. There are those who do bravely speak up. But I believe that there are many more who remain silent not as much out of a sense of fear of retribution but more out of a sense of no support.

While many are tempted to just walk away, I say that doing so only empowers the reactionaries of the Catholic Right. It is exactly what they want. In fact, it is their plan for conquest throughschism. They want those of us who embrace religious pluralism in society and liberalization within the Church to leave a global religion, with its well-organized hierarchy and diplomatic nation-state status, and massive resources, property and prestige -- solely in their hands.

I say that now is the time for rank-and-file Catholic to revive the idea of remonstrance, and draw on the wisdom of James Madison, who provides us with timeless tools with which to understand and to combat theocratic wannabes. In this way, we can disrupt the disrupters, not rudely or condescendingly but with dignity and firmness.

Our remonstrance can help us confront clergy who use the pulpit as a vehicle to seek to restrict the rights and the freedom of conscience of others. Our remonstrance can remind the media that the dogmatically orthodox do not speak for Catholics, or for Catholicism, but for themselves. And our remonstrance can remind our elected officials that their allegiance is to safeguard the religious liberty of all from an increasingly out of touch Church hierarchy.

And our remonstrance is just the beginning.

Now is the time for bold action. Surrender or grudging compliance is unacceptable. Resistance in the form of a loyal thoughtfulness that seeks reform, not overthrow, is the only acceptable course of action. Arrogance and intolerance are our opponents' way, not ours'. But all the same, it is bold action that will give our remonstrance collective strength.

Our bold action will strengthen the hand of our allies within the hierarchy and hearten those clergy who are waiting to speak out for the Church we believe in. We will rebuke the reactionaries. Some of us may pay a price for our actions. But sometimes such prices must be paid in order to achieve progress.

There will be those who read this and accuse me of being ant-Catholic. But nothing can be further from the truth. I am a Catholic who desires a vibrant Church, one that exemplifies the tolerant, dissenting, and inquisitive nature of its Founder. I understand that a Catholicism that uses oppression via secular government to enforce its dogmas is itself insecure in its own position. And I know that when any one set of religious beliefs become dominant over others then the free practice of all faiths is also threatened.

That is why I am calling for remonstrance - now!

Charitable Chocolate.

Say what you will about Hershey's Chocolate (or, from me, chocolate in general, ick) but old Milton, a Reformed Mennonite, knew what he was doing in some ways.

He didn't just form a company, he formed an community with hospitals, tree-lined streets, entertainment and schools. One could say his charitable faith informed his charitable work. The fact that he made his fate in Lancaster County, my home, does make me a little impartial, even if I refuse to eat the stuff.

Now it looks like the Hershey's Chocolate company is thinking of leveraging the charitable trust Milton formed in 1909 to give to the community in order to buy Cadbury.

Wait, Wait, Wait, "Euthanasia" is Not an Ideology.

From FamilyLifeNZ comes this rant of illogic:

Well, because our culture has fallen into a philosophical trap which completely confuses and rejects the great, and inalienable dignity and worth of the human person, and instead embraces the idea that your life only has worth if it meets a certain set of criteria – all of which are totally arbitrary.

So, according to this pernicious little ideology, if you’re seventeen and you’re relatively disease and disability free, then your life has great worth and it is too valuable for suicide.

But if you’re elderly, or disabled or sick, then your life all of a sudden has very little worth and suicide is the best thing you could do with your relatively valueless existence.

Sure, a sixty five year old person, or a person with a terminal illness is probably not going to live as long as a sixteen year old, and a disabled or elderly person can’t surf the break at Raglan, climb Mount Cook or compete in Dancing with the Stars, but so what?

Their life is no less valuable or less worthy of life than yours or mine, yet sadly, this is exactly the evil and false distinction that all pro-euthanasia ideologies proclaim.

Not only that, but at the heart of the pro-euthanasia ideology is a confused view of personal autonomy which believes that every human being should have the right to exercise total freedom and choice about how and when their life will come to an end.

Society has long deemed some members more worthy of protection than others. We're all aware of the "get the women and children out" approach to warfare and harms way. Of course, different values are placed on various societal constituents. But I would contend that women and children are also the last to be able to speak for themselves. In efforts to "protect" these segments of society (and the elderly and ill) we have assumed that "vulnerability" allows other bodies to speak for them, like government or the church or the medical profession.

What the writer is contesting is the lack of equal valuation of a 16 year old child - and I won't get into the cases she is referring to - and a 60 year old senior. She proposes that society is willing to speak for one and not the other. Yet, I contest that she is actually arguing for particular ideological groups to speak for the "vulnerable," and making the assumption that some are not able to speak for themselves. If compassion means paternalization, you can count me out.

And as for "euthanasia" being an ideology? Not a chance. The term is used by opponents of choice in death to conflate government-encouraged killing with patients' rights. Of course the former is sinister and the best way to silence the latter is to conflate the two. Those who fight for patients' rights don't care a fig about speaking for the discriminated segments of society, they want those who make up those segments to speak for themselves. That's not a system of philosophy which derives ideas exclusively from sensation; that's just human rights.

Character of the Anabaptist Faith.

Not Just Movies uses a review of Carlos Reygadas movie Silent Light (my review for KillingtheBuddha can be read here) to ask if Anabaptist character directly reflects centuries of persecution:

(It should be noted, however, that the community does not seem concerned with condemning Johan for his actions. The Anabaptists were heavily dogmatic but also largely peaceful, but they also suffered horribly at the hands of both Catholics and Protestants. I wonder, then, if the persecution and atrocity they suffered in some way instilled an instinctive lack of judgment in its descendants. Their acceptance of Johan's feelings does not, however, lessen the tension of his wracked conscience.)

We Own The Poor and Infirm: They are Most Susceptible to Our Beliefs.

Because Catholic and other churches have long claimed represent and care for the "least of these," westernized governments around the world have allowed them to speak for the mentally ill, the poor, and minorities. It's old turf for religion to claim compassion in the face of infirmity.

From The Catholic Herald, a bishop addresses the British government's necessary review of the existing suicide laws to comply with the summer's decision in the Debbie Purdy case, asserting that the church knows what's best for the suffering:

They said Keir Starmer, the Director of Public Prosecutions (DPP), was creating categories of people whose lives would be legally considered less worthy of protection than those of others in society.

The bishops said his interim policy for prosecutors in cases of assisted suicide stigmatised the disabled and the mentally and terminally ill and could send out the message that it was acceptable to help such people to kill themselves.

Mr Starmer was exceeding his powers by ignoring the will of Parliament, they said, which has rejected two attempts in the last 18 months to change the law on assisted suicide and euthanasia.

"A sick or disabled person's life should merit the same degree of protection by law," said the bishops in a submission to the public consultation into the draft proposals, which they made public on Friday last week.

But often these religious bodies are not working to raise up the poor, ill, and infirm to be equal members of society. They are counting on them to be forced, by need, to comply with church doctrine, to become believers. Suffering has long been the door through which faith walks. Fox holes, hospital beds, and gutters have long been better than pulpits for winning hearts to God. Find a man who's hungry and you find a desperate soul willing to barter his faith for bread. Find an ill child and you get a believer in gratitude for healing medication.

For example, take the Christianization of Africa during and after colonialism. US and European churches sent millions of missionaries to the continent who offered westernized medicine, materials, food, and support in exchange for belief in God, capitalizing on those with nothing to lose to expand church influence and membership. Giant swaths of the continent were paternalized by the church. And the local governments were not about to stop the influx of aid, often because it came with hefty pay-outs and protection of rulership.

To me this is the great lie of missionary work, both here and abroad. After all, the same case is made again and again these past weeks in the US and Britain regarding Catholic hospitals and the so-called conscience clause and end of life choice. While studies show that these entities do no more charity work than other non-profit or public hospitals, they have long claimed to speak for the least of society. Want to stop provider refusal of services at Catholic hospitals and we will pull out of health care, they say. We are the church and we don't compromise for patients' rights.

Killers All.

I come across a lot of this type of rhetoric:

Surprisingly, media accounts of the story have been quiet about the people who must have been pushing to have Houben put down over the past 23 years. Will these recent findings open the debate over ending the lives of people like Houben and Terry Schiavo?

It should, but don't count on it. Most of the extremists ardently pushing for euthanasia want one thing: to open the door a crack, just as they got a foot in the door on abortion to eventually turn the practice into a revolving door.

The legalization of abuses like euthanasia and abortion always starts with the hard cases. With abortion it began with instances of women's lives supposedly in danger. Then exceptions for mental health came along, then rape and incest, and now we're at the point where a Canadian MP was labelled an "extremist" in Parliament this week for supporting time limitations on abortion.

The assertion is repeatedly made that if one supports choice in dying and abortion rights (sadly, often conflated to mean other reproductive rights like contraception, sterilization, and AIDS and STD prevention counseling), one wishes to unleash a "culture of death" on innocent beings.

This demonization of others who believe in personal autonomy and patients' rights helps accusers to reduce the argument to a black or white thing. As well, it eliminates compassion for those who are suffering from the argument. As the rhetoric would have it, life is hard and if you don't believe in my God, well then, you should suffer for your immoral ways. Any expression of need outside the ordained realm of "Christian" care is vilified as aggression, and more importantly, as oppression of those imposing strictures. Personal autonomy becomes an affront to Christian society, an evil that the government is then colluded into stymying.

Hence, the preponderance of claims for the first amendment protections. Yet, freedom of religion means more than the reverence of one faith. Or the imposition of that faith, via government funded social services, on others who enjoy different beliefs. The more I study health care and provider restrictions on patients' rights, I find that the first amendment is being used by a powerful, vocal minority to subjugate an entire society. That's not freedom. That's plain discrimination at the hands of a government meant to protect all of our rights.