Friendly Fire - Disability magazine columnist criticizes woman's choice to select dwarf embryo

Last weekend, I visited New Jersey for the wedding of my wife's high school and college friend.  We stayed with my mother-in-law and father-in-law.  Just before leaving for the airport to return home from New Jersey, my mother-in-law gave my wife and me her copy of People & Families Magazine.  The magazine is a publication of the New Jersey Council on Developmental Disabilities. I have never read the magazine, and I don't keep up with what is happening in the disability field in New Jersey.  I find it difficult enough to keep up with disability issues in Illinois.  With that in mind, I don't know the politics of the New Jersey Council on Developmental Disabilities.  In the middle of the plane ride back to Chicago, my wife, who had been reading the magazine, turned to me, gave me a concerned look, and motioned toward a specific page in the magazine. 

The article was an Op-Ed by Norman Reim titled "The Debate Over Genetic Screening and Prenatal DNA Analysis."  The article examines recent evolutions within genetic technology and what that means for people with disabilities.  Discussing genetic engineering and DNA Analysis, the writer makes some broad points that are generally positive and that support informed choice (taking in a wealth of diverse information before making a decision regarding giving birth to a child with a disability) and disability inclusion.  For example, he writes, "We as a society need to be very cautious in opening up a vast area of governmental and even public opinion intrusion into the decisions a woman and her family make about having children....professionals, officials, and others with authority have had a poor record in predicting the quality of someone's life with a significant disability. (People & Families, p. 15, Spring 2013)"  I interpret this statement to say that rather than opening up choices and information, genetic screening and prenatal analysis actually limit choices.  This is because if a woman tests positive for a child with a disability, than there is an assumption that the child will be aborted.  According to an article from the USA Today, "Between 60% to 90% of women who receive a prenatal Down syndrome diagnosis end the pregnancy, according to a 2012 analysis of 24 studies in Prenatal Diagnosis."  Because the information available about disability is skewed toward the negative, when a diagnosis of disability is made, "You feel like the rug is pulled out from under you. You feel very heavy. You feel very, very alone. (With Down Syndrome Diagnosis Comes a Wrenching Choice, USA Today, May 1, 2013)."
 
Reim trips up later in the article, when writing about Preimplantation Genetic Diagnosis (PGD).  That's the section my wife was reading when she turned to me on the plane.  Through PGD, a woman may select an embryo to be implanted into her uterus.  In theory, the process could be used to weed out embryos that carry disability, and could be used to intentionally implant embryos that carry disability.  Several years ago, PGD caught the attention of Little People of America when a New York Times article reported that some PGD providers had "denied requests to use the process for selecting deafness and dwarfism,  (Wanting Babies Like Themselves, Some Parents Choose Genetic Defects, New York Times, December 5, 2006)." In the article, a doctor who denied requests was quoted to say, "In general, one of the prime dictates of parenting is to make a better world for our children . . . Dwarfism and deafness are not the norm, (Wanting Babies Like Themselves, Some Parents Choose Genetic Defects, New York Times, December 5, 2006)."  While dwarfism is obviously not the norm, it is inaccurate and irresponsible to suggest that a child without dwarfism is in a better world than a child with dwarfism. In addition, refusing to implant an embryo with dwarfism has consequences that go beyond one embryo that is or is not implanted. The consequences negatively impact how society views and treats all people with dwarfism.

Around 2007, LPA adopted a position paper on PGD that endorsed choice.  Basically, the paper said that if the process of PGD is going to be made available, then people with dwarfism and others should have the freedom to choose how to use that process.  That means, using the process, a person could select either an embryo that carries disability or one that does not. If the Op-Ed in People & Families is any indication, Reim would disagree with the LPA Position Statement.  Talking about a couple who used PGD to implant a child who would be Deaf, and about a woman who used the process to give birth to a child with dwarfism, Reim writes "Cases such as these reflect arrogance and selfishness."  He then compares the choice to implant an embryo that carries disability with purposely disabling a child after he or she is born. Reim's position on PGD is disappointing and his comparison to disabling a child after birth is inaccurate.  His comparison is inaccurate because technology exists that allows someone to make a decision about an embryo, but no disabling after birth technology exists.  In fact, it could be argued that the opposite is true. In the world of dwarfism, technology is developing that may eliminate the disabling impairments that are associated with dwarfism.  If and when that technology developments further, a parent will have a choice as to whether or not to pursue the treatment.  The same principal of choice must be applied to PGD.  The parent, not the scientist or doctor, must decide what embryo to implant. 

We all have different opinions regarding quality of life.  Some of us, even some of us with disabilities, would not choose to give birth to a child with a disability.  Some of us would.  But we need to fight for the freedom to choose. Unfortunately, if we don't fight hard and advocate for the disability and dwarfism community, assumptions about the quality of life of people with disabilities will lead to the regulation of the use of genetic and medical technology.  That will take decisions out of the hands of parents.  

Breakthroughs?

Earlier this month, a company called BioMarin announced a new drug program that could reverse the physical affects of achondroplasia. According to the news release, the drug (BMn-111) "is an analog of C-type Natriuretic Peptide (CNP), a small cyclic peptide that is a positive regulator of bone growth. It is produced and has a receptor in the growth plate, and along with the fibroblast growth factor receptor 3 (FGFR3), regulates normal bone growth." Much of the release included scientific and, interestingly, market, language I don't understand. But from what I do understand, it looks as if studies of BMN-111 have shown that the drug reverses affects of achondroplasia in mice, and that a 'clinical trial' of the drug won't begin until 2012. My favorite part of the release I believe emphasizes that the statement, in my opinion, is more about the economic market than so-called scientific progress. Evidently, what the release says about achondroplasia is considered a 'forward-looking statement.' According to the release, "Stockholders are urged not to place undue reliance on forward-looking statements." I'd like to know if people of short stature are supposed to rely on the statement. More pressingly, I'd like to know what we are supposed to think about the statement.

In terms of so-called scientific breakthroughs, this is the not the first one relating to achondroplasia. In the 1990's, scientists identified the gene that carries achondroplasia. At the time, people wondered if the discovery would lead to fewer parents of average stature carrying their child to term if the embryo was identified to carry achondroplasia. A decade and a half later, I don't know how many parents are aborting pregnancies because of dwarfism, but, as far as I know, eighty percent of people of short stature are still born to average height parents. About ten years after the dwarfism gene was discovered, a procedure called Preimplantation Genetic Diagnosis was announced. Through the procedure, a parent could select from a set of fertilized eggs, theoretically allowing a parent to select quote unquote healthy eggs. Soon after the announcement, Little People of America released a position statement on PGD. The LPA statement focuses on choice, saying if such a procedure is offered, people must have the option to implant any available, whether or not it carries dwarfism.

I am no scientist, and have no idea what 15 or five years means in the scientific breakthrough community. Is a decade an eternity or barely a heartbeat? It seems to me that both the gene discovery and PGD, to this point, have had relatively little impact on the community. This probably has a lot to do with costs. My guess is that BMN-111, if it develops, will have little impact on the coming generation of children with achondroplasia. That said, I am still troubled pgd, BMN-111 and any scientific announcement that implies dwarfism is a disease better avoided or cured. For thousands of people living with dwarfism, their families and friends, and their future children, dwarfism is a culture. As a culture, both dwarfism and general, we are better off investing, not in drugs that make mice bones grow, but in legislation like Kennedy Brownback, anti-bullying measures that cover a range of marginalized groups, disability and dwarfism awareness initiatives, and accommodations, all in an effort to equip people with dwarfism to pursue the same opportunities offered others.

Matt Roloff at the Illinois Holocaust Museum

A week ago, September 26, I went with a friend to the Illinois Holocaust Museum to hear a talk by Matt Roloff of Little People, Big World. From the day I first read the listing in a Skokie Illinois Newspaper, announcing Roloff's visit to the museum, I'd been looking forward to the lecture, mostly because of my curiosity about what Roloff might say. Whoever we are, the Holocaust holds a significant place in our individual conscience. I was fascinated to hear what connection Roloff would make between what he had to say and the place in which he was speaking.

Roloff spoke for about an hour. Kicking off the lecture, Roloff did make a connection to the Holocaust and people of short stature, alluding to a woman named Liebe Perla and her family, a group of musicians who were dwarfs. During World War II, Perla and her family survived Auschwitz because Mengele kept them alive in order to conduct experiments upon them. Roloff put that story in the context of his own life, explaining that as a young boy, he spent months and months in hospitals. Although he had many surgeries that were necessary, Roloff said he was often subject to poking, prodding and pictures at the whim of doctors. Examinations that made him feel less like a patient, and more like an experiment.

I don't doubt it. When Roloff's generation and my generation was young, not much was known about dwarfism. I have memories of standing naked up against a wall as a four or five year, with a team of doctors before me perplexed by the curvature of my back and legs. Today, I am grateful for the brace that straightened my back and the surgeries that straightened my legs. Without them, I probably wouldn't be able to do many of the activities I do today. But even a four year old tries to maintain some dignity. I'm not sure if such a public examination is necessary.

Roloff linked the prejudicial treatment of Liebe Perla and the objectifying treatment that he experienced as a young boy to contemporary decisions that reflect prejudice against people of short stature. He said he knew of a couple who wanted to have a child. Through either in vitro or preimplantation genetic diagnosis, they wanted a dwarf child. But their wish was refused. No one would implant them with an embryo that carried the gene for dwarfism. People with dwarfism certainly face challenges that are specific to dwarfism. But everyone faces challenges. To presume that the challenges of a dwarf compared to the challenges of another person are more significant, and justify decisions that suggest a dwarf's life is unworthy of living, is certainly reflective of prejudice against people of short stature.

To change attitudes, or systems (see schooled, September 29), that deny people with dwarfism a choice offered to typical statured people will not be easy. Even after the work of people like Billy Barty, the founder of Little People of America, and the Roloffs, who have opened up the minds of millions of people about dwarfism, we still face systemic barriers that deny us what others are offered. But even if it's one person at a time, if Matt and others continue to share their stories, like he did in Skokie at the Holocaust museum, minds will open up and understand that far more connects the lives of little people with others than separates it.