Self determination and autonomy have rarely, if ever, been touched upon really in terms of actual policy formulation aimed at granting and protecting and enforcing those rights until the second half of the twentieth century when notions of human rights were formulated after World War II.
Even the Founding Fathers of this nation did not believe in human autonomy for all, which is why women got to vote some 150 years after the foundation of this nation and thus after the Declaration of Independence. When that document reads “all men are created equal“, it really does mean all males. The Founding Fathers, in all their wisdom notwithstanding, did not recognize that women were part of mankind.
One of our – as human kind – most fundamental rights – which is a human right and something inalienable, irrespective of culture and country of origin – is the freedom to be autonomous and make decisions based on that autonomy. This is a very fundamental and important right that often does not get the important attention it deserves. Way too many people are comfortable with having that autonomy diminished or taken away from them.
Most, if not all, conflicts throughout human history leading up to today, in not only this very country but all around the world really, have been about controlling others by taking away their autonomy to choose for themselves how to live their lives, what to believe in and subsequently what choices to make.
Eric and Ruth Brown were not those people. They had a choice and the freedom to exercise that autonomy to make a choice.
Deformity and Suffering as the Creator’s Will
The couple from Nashville, Tennessee, believe that the genetic disorder that created a cleft in their daughter Pearl Joy’s upper lip and caused her brain’s development to stall in the first weeks in the womb, to be god’s will.
“Things didn’t go wrong,” an apparently delusional Eric Brown said. “God has designed Pearl the way he wanted, for his glory and our good”.
This delusion has sustained the Browns ever since ultrasound revealed that the couple’s third child has alobar holoprosencephaly, a rare genetic condition that’s almost always fatal. The Browns never considered abortion. They believe that Pearl is “fearfully and wonderfully made,” as Psalm 139 puts it, and god alone should decide when she lives and when she dies.
Pearl’s brain never divided into two hemispheres during her development in the womb, which means she is basically a crawling vegetable. “We don’t care about those things. She is here, and her brain is telling her how to live“, says Eric Brown.
The Browns are holding on to dear life, literally, as they delude themselves into believing that as long as their girl is basically still warm she should live and that her life is wonderful and a blessing, even though she has seizures on a daily basis, has a weakened immune system and has been back to the hospital at least five times in the past three months. A simple cold could kill her but “that day hasn’t come yet“, her mother says. The Browns not only insist she is god’s gift, they also think Pearl is actually fighting.
Fighting for what is unclear. Is she fighting for a miracle? Is she fighting for growing up being normal after all with this disease poofing out of existence much the same way this Earth poofed into existence according to the Bible?
Even skeptical neighbors, friends and acquaintance have bought into the delusion, applauding the Brown’s decision.
Kristina Guisler, a friend from the MOMS Club of East Nashville, met the Browns in 2009. When she first heard about Pearl’s condition, she said she wasn’t sure the Browns had made the right decision by continuing with the pregnancy. She wondered what kind of life Pearl would have.
But seeing the love that the Browns have for Pearl has changed her mind and strengthened her own faith.
“It’s reaffirmed my faith in humanity and in the power of prayer,” she said.
The Browns aren’t the only ones suffering from serious delusions, Nancy and David Guthrie of Nashville faced the ordeal twice: in 1998 and 2002 when their son and daughter both died in infancy from a fatal genetic condition called Zellweger syndrome. In Gabriel’s case, the Guthries learned he had Zellweger while he was still in the womb.
“One of the things we learned is that great sorrow and great joy can coexist,” she said. “Because life in the image of God is so precious, there is great joy in having this one you love with you, even while there is great sorrow in knowing that this child might not grow old with you.”
I have read and seen religious people talk themselves into a whole lot of bullshit and delusions to make it through their lives, but this sure takes the height. What I find particularly disturbing is this:
“God has designed Pearl the way he wanted, for his glory and our good.”
So god, in all his wisdom and love, would afflict a child with disease, deformity and suffering? And being born with a horrible genetic disease that renders you nothing but an animated doll trapped in a painful and torturous existence at the verge of death is something god did for his glory? There is glory to be had from this? And said disease and deformity is for the good of the parents.
All the credit, but none of the blame, huh? Hmmm maybe god is a Republican after all
But there is a broader canvas here. The above statement by the Browns is disturbing and akin to Indiana Tea Party Senate candidate Richard Mourdock’s comments that pregnancies stemming from rape, however horrible, are “something that God intended to happen” – as if rape wasn’t a crime and heinous act but just something in god’s secret and elaborate plan for all of us lemmings and for “his glory and the victim’s good.”
Does that mean rape itself is part of god’s plan? And genocide? And mass killing and child rape? Most religious people would say “no” (or maybe yes), which creates all sorts of contradictions because what they are saying is that the act of rape is not god’s will but the resulting child is. In other words, god would never orchestrate a rape, but would definitely exploit a rape to impregnate a woman.
That is amazing. Where do I sign up to worship this excellent decision-maker?
It is great that believing that there is a higher purpose to their suffering has allowed the Brown’s to not only justify their choice but also live with it this long.
Remember people believe in all sorts of stories and even lies for self preservation and to make it through the day and their lives. That is why we have religion in the first place. It is called cognitive dissonance, which is the term used in modern psychology to describe the state of “holding two or more conflicting ideas, beliefs, values and emotional reactions simultaneously. In a state of dissonance, people may sometimes feel surprise, dread, guilt, anger, or embarrassment. The theory of cognitive dissonance in social psychology proposes that people have a motivational drive to reduce dissonance by altering existing cognitions, adding new ones to create a consistent belief system, or alternatively by reducing the importance of any one of the dissonant elements.”
The Brown’s are engaging in precisely that. They are people of faith who believe that the deity they believe in does all things for a reason. Such a notion is an especially opportune world view when good things happen. When something horrible, such as the birth defect of their child happens, on the other hand, said believers are suddenly left in shock, asking themselves where the good is in having their own child be afflicted with such a condition. Suddenly, painful reality and the tenets of their faith are at odds. If god is all loving and all caring, how can he let this happen? That is where “filling in the gaps” comes in becasue the Browns are human beings who can only take so much pain before losing it.
How do they cope with it? They cope with it by attempts to reconcile the reality of their situation with what they have been taught god to be. Thus, they tell a lie to themselves. But they do not know it is a lie. It cannot be. If it was, that would bring down their entirely worldview and the reality they have created for themselves. Their self delusion in that regard is quite sincere. The Browns have to believe that this is all part of a grander scheme. This, in turn enables them to go through life without feeling hopeless and without loosing their faith and feeling let down by their grand and loving creator.
Delusion is a wonderful thing and nothing deludes more than religion.
The truth, of course, is that this baby will be confronted with a myriad of painful medical procedures that she will have to endure but not understand the need for. There are limits to the amount of painkiller an infant can be given. The question really is whether the child is having a quality of life that satisfies the child’s nature, or whether being kept alive on IVs, feeding tubes, oxygen and other meds is the truly loving and wonderful alternative.
And can you say this is what the divine intended when the only thing keeping the child alive is medical technology, not god? The parents might enjoy the love and care they are giving, but what about the infant?
Ultimately, the Browns are doing this to make themselves feel better. They think they are doing this child a favor, but they aren’t, they are only doing themselves a favor and justify their decision by making appeals to the grand schemes of a higher power.
The only victim in this process is Pearl. Her family is holding on to delusions to prolong the life of a vegetable. For Pearl living or not living does not make a difference. She doesn’t even know what and who and if she is. Her brain didn’t part into two hemispheres for cryin’ out loud. She is nothing but an animated doll and for her there is no difference between living and dying, becasue there is no “her” there. She is just a breathing shell.
The idea that you have emergency oxygen standing by makes one wonder about whose will we are talking about, god’s or the ego’s. Her family’s understandable efforts to cope with her condition by putting a pretty spin on it only trivializes her suffering. And theirs.
Not Just Faith But Choice
The delusion of the Brown’s view on this aside, the bigger question here is that of choice. The beauty of freedom is that people, including the Browns, can choose to believe in any number of lies to make it through the day and their lives. And their decision, whether I agree with it or not, is ok.
As long as the Browns do not say to someone else that this is why their child has been blessed with a deformity and death. they can believe in hob goblins as far as I – and reality – are concerned. Sure it is naive and ignorant to attribute any condition onto god, and I mean naive in the sense of immature, unknowing as it relates, but if that is what they need to make it through their lives, who am I, or anyone, to argue with that?
Only that the delusions of religious people are rarely confined to their own personal realm
And therein lies the fundamental problem with letting faith guide your decisions. Religious people place their emotions before their intelligence. The problem is that when people make important decisions based on a fantastical belief system rather than facing unpleasant realities that they’d rather pretend don’t exist, it can leave a lot of collateral damage that affects others. Just look at the recent assault on women’s reproductive rights callously championed by Republicans and conservatives based on their religious beliefs.
The Browns – for better or worse – had a choice with respect to keeping this child alive and caring for it. Ruth Brown could have gotten an abortion, but due to her personal beliefs she decided not to. She had a choice.
Unfortunately, the same cannot be said of the kinds of policies Republicans push for and have partially succeeded in when it comes to granting women autonomy and the freedom to choose what they believe to be the best decision for them. The Browns were lucky that they were able to make the decision to have their the child without threats and pressure to obtain an abortion.
At the same time, remember that simply becasue it worked for the Browns and was the best decision they could make based on their lives, it does not mean it is the only right and honorable answer. A couple choosing to get an abortion should be able to do so without facing obstacles and judgment and shame just as the Browns. In short, the Brown’s decision to keep the child is not more admirable than the decision of someone else in the same situation to abort it.
In the end, it is all about choice and giving people the freedom to make that choice. In this day and age, it’s a true luxury to have one’s autonomy respected and your choices be your own. I wish lawmakers everywhere would make note of this because nothing diminishes an individual more than stripping them off autonomy.