Friday, May 31, 2013

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.  

Monday, May 27, 2013

Tall enough to reach the ground

Tiffanie DiDonato continues to make headlines with her memoir, "Dwarf:  A Memoir."  The book was published last year.  Soon after publication, DiDonato appeared on "Good Morning America," "Nightline," and other shows.  The memoir chronicles DiDonato's experiences with limb lengthening surgery, a surgery available to people of short stature that involves breaking bones in the arms and legs and setting them in such a way so that when the bones heal, the patient will gain extra height.  Over the course of several surgeries, DiDonato gained about 14 inches.  The book popped up in the news again this month when Dinonato made an appearance to talk about her book at the public library in a town called Marlborough.  The website published a story in advance of her visit.  Many of the stories I've read about Dinonato and her new memoir include mention of Little People of America's Position Statement on Limb Lengthening Surgery.  The story also included reference to the statement.  The story, like many of the other stories about DiDonato, incorrectly indicates that LPA is against the procedure.  The story states that LPA is against "limb lengthening."  While the official LPA statement addresses reservations with the procedure, including risks and the fact that it is not a necessary treatment, LPA remains neutral as an organization.  Rather than take a position one way or another, LPA tries to equip individuals with the resources to make the best informed decision.

I can understand why writers and the media would frame the position of Little People of America as against limb lengthening.  Doing so creates a conflict, or tension, and conflict and tension result in a more engaging television interview and book.  Yet, the artificial tension does a disservice to DiDonato, to Little People of America, and to the dwarfism community.  DiDonato may have made the decision not to get involved with LPA or with the dwarfism community.  There is no problem with that.  Only a small fraction of people with dwarfism get involved with LPA.  The role of LPA  is to be available for any person with dwarfism at any point in a person's life when he or she may want to get involved.  Perhaps not, but there may be a time in DiDonato's life when she wants to get involved.  An artificial gulf has been built between her and the organization because of the media's inaccurate representation of the Limb Lengthening Statement.  That gulf will make it harder for DiDonato to get involved in the future. Likewise, other people, besides DiDonato, who have chosen to undergo limb lengthening surgery, may feel unwelcome in LPA because of the inaccurate representation.

More importantly, the misrepresentations in the media hurt the entire dwarfism community.  In the articles about the surgeries, DiDonato says she wanted to be more independent.  The surgeries gave her the height and reach necessary to drive, fix her earrings, do her hair, reach door knobs, etc.. For most everyone, all of these things are essential elements that make a person feel independent.  It is understandable that, given a choice, a person would pursue the opportunity to be independent in this way.  I completely relate to the piece about driving.  I love driving but can't drive without pedal extensions.  Nothing frustrates me as much as when I can't drive a rental car because my pedal extensions don't work on a particular model.  For me, if I were ever to pursue limb lengthening, it would be for two reasons:  to drive without extensions; and to cross my legs (my short legs are unable to cross and I feel like I've been denied that appearance of sophistication that comes with crossing one's legs).  The thing is, if I were to have the surgery and if I gained 10 inches of height, I would still be a dwarf.  That's what I think is missing from the articles about DiDonato.  She explains that she had the surgeries for practical reasons, but by creating this gulf between her and LPA, the articles make it seem like the surgeries are also about leaving behind the dwarfism world.

Toward the end of the article, the reporter writes, "DiDonato said she still has bad days and challenges related to dwarfism."  In this sentence, reflecting a time long after the surgeries were performed, bad days are directly related to dwarfism.  Again, this suggests that the surgeries were as much about eliminating dwarfism than about gaining inches.

It may just be that I am defensive because I take personally the misrepresentation of LPA, but if other people read the media portrayal the way that I do, than that is a problem for all people with dwarfism. 

Sunday, May 19, 2013

Festival highlights disability arts and culture

The summer my wife and I started dating, she competed in a Sprint Triathlon.  The morning of the competition, we were both outside early.  We biked to the course to set up Katie's transition stations.  It was five or five thirty in the morning when we were biking through the downtown streets of Chicago on our way to the lakefront.  The only other people up so early in the morning were other athletes, also on their way to the course.  In a way, there was this sense of camaraderie with the other athletes.  Every one who was out and about was there for the same reason. Yet, because I was not competing, I had this sense of loneliness, like I was left out of something. 

I had a similar feeling of loneliness last Friday night, May 17.  On May 15, Bodies of Work, an 11-Day Disability Arts and Culture Festival, kicked off in Chicago.  As part of the festival, Access Living, where I work, hosted two performances of Counter Balance IV - dance, spoken word, and music that includes performers with and without disabilities.  I planned to attend Friday night after my day of work.  Not long before the performance started, my cousin sent me a text.  He lives in Milwaukee but was in town for a conference.  At the end of the day on Friday, he had to return to Wisconsin but he wanted to stop by my work and say hello.  When he arrived at Access Living, I introduced him to a few people with whom I work, then took him up to Access Living's event space where Counter Balance was about to start.  He didn't have time for the entire show.  We wanted a chance to talk, so after the first two pieces, we went to a bar around the block and drank a beer.  About an hour later, my cousin started the drive back to Wisconsin.  I returned to Access Living.  I got there at the start of the very last performance of the show.  After the performers took a bow, and the lights came up, I hung around a little while.  While I made my way through the crowd, I talked to many people who appeared to have been transformed during the hour that I left.  It was as if multiple performances within Counter Balance IV had a transcendental affect of the audience, taking them to a place they had never before been.  I more I saw the look of awe and wonder on the face of people in the audience, the more detached I felt.  Just like the Triathlon, I was missing out on something of which everyone around me was a part.

Fortunately, Counter Balance IV ran for two performances.  I returned on Saturday night.  I watched the entire performance. Pieces of the performance that touched so many others one night earlier, touched me on Saturday.

I am lucky that Chicago is the host of a Disability Arts and Culture Festival.  I am even more lucky that the building were a work hosted some performances within the festival.  Beyond the pleasure and satisfaction that each performance brings, the festival does important work on a broader scale.  The festival sends an important message that resonates beyond disability, into the general population.  The festival is not about showing what people with disabilities can do in spite of their impairments.  The festival is about giving voice to the art of people with disabilities, and it's about illuminating the disability experience.   In a story from The Chicago Reader, Carrie Sandahl, the Director of Bodies of Work, said "She hopes the festival provides disabled and nondisabled people with a chance to mingle comfortably. 'Usually nondisabled people are told not to stare. It creates almost a hypervisibility and an invisibility at the same time. What the festival does is say, Hey, look at us — we have something to say that's not what you think it is.'"  I can't speak for the non-disabled people, but I assume, if they haven't heard the message of the festival, then they are not listening. 

Saturday, May 11, 2013


At some point, my life became almost as much about the way I perceive things and the way others perceive me, than about what I do and what others do.  My first memory of this change is from the 90's.  I was at some kind of non-profit fundraising event at a theater in the neighborhood of Rogers Park in Chicago.  This guy on stage was telling a story about a community of people who lived near a famous river.  I think the river was the Ganges in India.  The river played a prominent role in the religious aspects and the practical aspects of the community's life.  Yet, the river was very polluted.  People bathed in the river and they dumped trash into the river.  The fact that the river was polluted was an insult to the spiritual and religious significance carried by the river.  This was a problem for the people who lived in the community.  To address the problem, they started to think about the river differently.  Rather than think of the river as polluted, and put the blame on the river, they thought of the people perpetrating the acts upon the river as polluters.  The onus was lifted from the river and put on the humans and animals that were polluting the river.  With this frame of reference, the river regained its spiritual significance. 

The second step in my change of thinking came when I started to work for a non-profit disability rights organization.  Early on, I was indoctrinated with a philosophy called the "social model."  The philosophy revolved around how one perceives disability. Unlike the medical model, which looks at disability through the lens of a condition that needs to be fixed or cured, the social model portrays disability as a natural part of the human condition that will someday impact everyone.  In order to create a community that is inclusive of people with disabilities, the also is not to fix the disability, but to fix the inaccessible aspects of the community.  I've worked at the same non-profit for nearly 14 years.  Even on a day to day basis, much of my job deals with sharing that social model philosophy with members of the at-large, non-disabled population. 

The philosophy has its critics, even within the disability community.  But the social model way of thinking has become ingrained in me to such an extent, it applies to me not only while I am at work, but all the time.  I am also thinking not about what happens, but about how to frame what happens.  For example, 2012 was a great year for me.  I accomplished many things of which I am proud.  But when I think of the most significant highlights for me in 2012, nothing I did stands out.  What stands out is Peter Dinklage winning the Golden Globe and Andrew Solomon writing Far From the Tree.  Those events are more significant because they had a more intense impact on how I perceive myself as a person with dwarfism, and how other people will perceive individuals with dwarfism. 

I was reminded of the importance of perspective earlier this week when a friend of mine shared a video called "This is Water."  The video is framed through a speech given by David Foster Wallace at the Kenyon College Graduation Ceremony in May of 2005.  He frames the speech on the premise that most of us operate in a default mode.  In the default mode, each of us as an individual is the center of the universe.  As the center of the universe, every road block we encounter is an inconvenience, an insult, a waste of our time.  He argues that if we always look at the world through the default mode, it's going to wear us down, exasperate us, depress us.  He says we have to step out of the default mode and look at things from a perspective outside of our own.  Doing so, we will be more compassionate.  We will be more empathetic. 

Some people may think the video and the speech hogwash.  They may roll their eyes and mutter, "whatever."  That response is fair enough.  But to me, the video is very important.  It reminds me that I need to look at what happens to me from multiple perspectives.  As a person with dwarfism, this is particularly critical.  I, along with many other people, have to deal with a lot of unnecessary stuff sometimes.  How to frame the unnecessary stuff makes all the difference.  It helps me realize that my dwarfism is not the problem.  And it helps me realize that the perpetrators of the "unnecessary stuff" may be sympathetic.  I don't want to justify mistreatment of people with dwarfism, or the mistreatment of anybody.  But sometimes it's helpful to try to understand why they do what they do.

 Sadly, David Foster Wallace died by suicide in 2008.  I always been familiar with his name, but have never read anything of his. Even if I never read anything of his, I am thankful for his effort to reinforce the message of perspective.