Leave a Trail of Genius

I don’t think she even needs an introduction…
I am humbled to present Katherine Clark’s newest piece, or as I am blessed to say: My friend, Kate, wrote this. I read it days ago, and my mind is still blown. I wish I could write a commentary on this piece, but I fear the length would nearly double her own! Sadly, our family left before seeing the speakers at the LPA Conference in DC, but the message is shared so eloquently below…

If you do nothing else in life:
notepad

 

“Leave a Trail of Genius”

I would like to begin this conversation by sharing a mother’s written account on the birth of her daughter.  The mother’s daughter was born with Achondroplasia and her narrative genuinely expresses feelings of anguish, uncertainty, and hope.  She presented her “story” in front of a group of physicians at Akron Children’s Hospital back in the early 1990’s.  The mother’s intention was designed to engage inquiry, as well as enlighten physicians on the subject of skeletal dysplasia and its medical needs.  The mother stated:

It has been almost ten years since our second daughter was born.  I still remember great joy in that delivery room, but it has been a very long road since that morning.  Within an hour after her birth, our pediatrician came to my room, while my husband was happily calling all the relatives.  In the most matter of fact way, he asked me if anyone had told me about the baby? He proceeded to tell me, without my husband present, that something was wrong with her … she was what they called an F.L.K. … a funny looking kid.  He said he suspected that she had some sort of genetic problem and that they were getting ready to send her over to Children’s Hospital for skeletal X-rays.  I was literally numb.  When my husband came back into the room I was in hysterical tears and he had no idea what I was talking about.  Of course the doctor was gone.

If sharing these emotions with you makes you a little uncomfortable, they were meant to.  Not only did that pediatrician lack compassion and consideration of my lack of medical knowledge, but his greatest fault was that even six months later he had not offered any help to us as parents. Yet we indeed had a child with certain physical handicaps requiring medical attention…all I knew was a fourteen letter word that meant my little girl would only grow four feet tall.  That same pediatrician had mused that I really was not so very tall myself and that we should just ‘take her home and love her’ (qtd. in Adelson 126).

Audiences can further read about MY mother’s presentation in Betty M. Adelson’s detailed and informative book, The Lives of Dwarfs.  Yes, I said “my” mother.  Shockingly what I find “uncomfortable” 32 years later, the exchange between physicians and parents with children of varying skeletal and hormonal dysplasias (still) reveals a lack of empathy, similar to what my own mother experienced.  I’m left scratching my head as to why little has changed, but I greatly appreciated two important Keynote speakers at the LPA National Conference in Washington, DC:  Andrew Solomon and Rick Guidotti.

                I know several people who like to record their thoughts in either a daily journal or diary.  I’m not one of those people; however, I do have a unique way that I go about documenting life’s important words, phrases, and memories.  I carry with me a small steno pad; it’s usually in my purse.  And when I hear either a word or profound statement spoken by a stranger, friend, or colleague – I write it down.  Of course, I include both appropriate date and “oracle.”  I was disappointed to find I did not have my beloved steno pad in the contents of my purse, while away last week at the National Conference.  It bothered me.  Its absence broke the continuity of my learning ritual.  Determined to find a replacement, I noticed a small notepad strategically placed near the phone in my hotel room.  And at the top of the notepad read the phrase:  “Leave a trail of genius.”  Both the educator and lifelong learner in me knew I could not attend either any given workshop or keynote address without this substitute notepad.  Thus I carried it with me all week. 

I would like to share what I recorded on this notepad; I now recognize why 32 years later the conversation has varied little between physicians and parents.  Further, from my own understanding, both Andrew Solomon and Rick Guidotti addressed why there is an “absence of reason,” and I wrote about this “absence” in my last piece:  “The Truth, Not an Exaggeration.”  I believe the “absence of Reason” characterizes “America’s disability,” as well as lack of “consideration” toward our social, cultural, and physical differences.  Simply, we fear what is considered different, unfamiliar, and certainly, we tend to fear what makes us feel uncomfortable.   

 

Andrew Solomon, author of Far From the Tree and The Noonday Demon:  An Atlas of Depression, delivered a superb Keynote Address at the National Convention banquet.  He said to the audience, “I would like to share the ‘dark first,’ and then the ‘light side’” seen within the dwarf community.  I admired both his honest approach and poignant sophistication to telling a side of the story most people don’t recognize in my “rare” minority group.  The writer and lecturer on psychology and activist in the LGBT community did not sugarcoat.  Instead, he touched base on a conversation that is very real and even more so quietly discussed in LPA.  The conversation highlighted key points pertaining to mental health.  And Solomon further mentioned in his speech “medicine shortchanges identity.”  I couldn’t help but wonder if that attributes to the mental anguish and physical struggles I have seen so many dwarfs and their average height parents combat, especially when an insular physician tells a mother her daughter is an “F.L.K.”

 

I believe the crux of Solomon’s speech revolved around the notion, as he brilliantly stated:  “Our differences unite us.”  He offered to his audience the following idea: “We need to diversify the human experience.”  Solomon explained the concept behind what he calls an individual’s “horizontal identity,” as well as “vertical identity.”  The “vertical identity” is connected to the literal family tree.  Hence, the proverbial phrase – the fruit doesn’t fall far from the tree.  And 80 percent of individuals with Achondroplasia are born to families of average height.  Individuals like myself, according to Solomon, have both “horizontal” and “vertical identities.”  My “vertical identity” is linked to my family; I am my mother’s daughter.  Our bond is in our genes.  Yet, interestingly Solomon’s thesis successfully conveys the idea that my own “horizontal” identity is linked to other short statured individuals.  We, too; that is, my short statured peers have a strong bond that “unites us.”   I can see that.  I agree.  But I will be honest – It has been difficult at times to comfortably acknowledge my “horizontal identity.” 

 

Some nights I lay awake in bed.  I worry about my health.  I worry about my severe lumbar spinal stenosis.  I worry about losing my independence.  I worry about being alone.  My “vertical identity” – my family – is physically strong, athletic, and healthy.  I worry about Medicare.  Yes, it’s difficult to comfortably acknowledge my striking physical difference, and my difference requires medical attention.  I am wide awake at night… feeling bitter.  Andrew Solomon referenced Betty M. Adelson in his Keynote Address, and he quoted Adelson having stated: “The only permissible prejudice in PC America is against dwarfs.”  She’s right.  It’s hard not to feel bitter.  But I also feel fortunate; I am loved.            

 

The difficulty and bitterness, I think, reveals itself in language, as well as the rhetoric used to describe social, cultural, and physical differences.  This brings me to a candid conversation Chelley and I discussed one evening at the Conference.  And at one point in our conversation, Chelley mentioned, “I don’t like how the word ‘condition’ is associated with my daughter.”  I said to my friend, “I’m not a mother.  I’m not a wife.  But if I were a betting woman, parents have learned, rather they were told probably by physicians, that their son or daughter has a ‘condition.’”  And I shared my “mother’s story” with Chelley.  And I said to her, “My job is similar to a physician’s.  Physicians are like teachers; they are educators.  My students like Shakespeare because I like Shakespeare.  I have passion.  I am excited about literature.  That emotion is conveyed in my classroom and my students learn how to like Shakespeare from the information I present and more importantly in the way I present it.  I don’t treat Shakespeare like a ‘condition.’  Shakespeare is neither a disorder nor a summer school punishment.  Shakespeare is incredible.” 

 

Andrew Solomon, in his Keynote address, shared a telling revelation from a physician who is also the chair of Columbia University’s Department of Obstetrics and Gynecology:  Mary D’Alton.  Dr. D’Alton is also quoted in Solomon’s Far From the Tree having stated:  “’You say that the baby has a hole in his heart,’ she said, ‘and they say, ‘But you can fix that, right?’ But when I tell someone that they will be having a dwarf, they often seem disgusted by the idea’” (qtd. in Solomon 116).  Here is “the dark” Solomon was referring to in his address.  And the darkness is real.  32 years ago my mother was in “hysterical tears” when she found out her daughter was a dwarf.  Dr. D’Alton’s account suggests the “darkness” is not the fault of the physician; rather, society’s inability to Reason is to blame.  Yes, I have a condition.  Yes, my genetic condition has resulted in my skeletal dysplasia.  Furthermore, my condition needs medical attention from experienced and sincere physicians.  But society fails to recognize, as Solomon beautifully identifies, “our differences unite us.”  If society could see this union, then my condition would neither be viewed as something “dark” nor “seem disgusted.”  Yes, it can be hard to deal with at times both mentally and physically as a parent to a child with dwarfism or for a short statured individual like myself.  It is very difficult.  I will admit there are times when I find myself in “hysterical tears.”  My sorrows are real when society excludes my worth, intelligence, credibility, and integrity as an educator, woman, and person.  But I am happy to recognize my vulnerability is my greatest strength.

 

Yes, it has been difficult at times to comfortably acknowledge my “horizontal identity.”  Yet age has helped.  A lot of things get better with age.  The stunning Marisa Berenson shared similar views in a documentary directed by Timothy Greenfield-Sanders.   About Face was a documentary that showcased photographer Timothy Greenfield-Sanders’s personal interviews with some of the most popular faces in the fashion and modeling industry.  On an intrinsic level, I connected with Berenson’s statement when she referred to the mind’s ability to change with age.  Berenson stated, “When you get older, you build something else in your core, which goes beyond the physical, because it has to.”  Berenson’s statement reveals to me the “light” Solomon discussed in his Keynote Address and the literal light photographer Rick Guidotti uses with his camera in order to showcase “Positive Exposure.”          

 

Positive Exposure is an amazing organization founded by Rick Guidotti that has set out to quite literally and figuratively “redefine beauty.”  LPA invited Guidotti to the National Conference, and it was there when I received the chance to meet him in person.  He didn’t shake my hand.  Instead, he got down on his knees and hugged me.  And what surprised me is not what he did as much as it was what he said: “My goodness you are absolutely beautiful – Gorgeous!”  All that he captures with his lens is beautiful.  It’s beautiful because it’s not humanity that he understands; rather, he can recognize its existence and irreplaceable worth.  Guidotti, I am sure, would agree with Solomon:  “Our differences unite us.”  He, too, delivered an engaging as well as illustrative presentation with a strong message:  “We need to put the humanity back in medicine.”  Yes, I agree.  I do not want physicians to tell me I am “disfigured.”  I do not want physicians to label me an “F.L.K.”   

In a conversation one-on-one with Guidotti, just a few short moments before he asked if I would be willing to “smile for the camera,” I said, “I can relate to Mary Shelley’s Creature in her masterpiece Frankenstein; or, The Modern Prometheus.”  Guidotti’s eyebrows furrowed for a quick second as to express intrigue.  And I continued, “The Creature wanted nothing more than to be accepted by his creator – Dr. Victor Frankenstein.  And it was most upsetting for the Creature to realize his 206 bones and Mind were neither appreciated nor acknowledged fairly by society.  Society saw the Creature as different.  And society will fear what it considers different.”  Guidotti’s eyebrows furrowed, again.  And then he posed the question: “Are you a writer?”  I just smiled and said, “Shelley wrote, ‘Beware; for I am fearless, and therefore powerful.”

 

References

About Face.”  HBO Documentaries.  HBO.  30 Jul.  2012.  Television.

Adelson, Betty M.  The Lives of Dwarfs.  New Brunswick:  Rutgers UP, 2005. Print.

Guidotti, Rick.  “Positive Exposure.”  LPA National Conference.  Washington Marriot Wardman Park, Washington, DC. 1 Jul. 2013.  Conference Presentation.

Solomon, Andrew.  Far From The Tree.  New York:  Scribner, 2012. Print.

—.  “Our Differences Unite Us.”  LPA National Conference.  Washington Marriot Wardman Park, Washington, DC.  3 Jul. 2013.  Keynote Address.

 

Comments

  1. Sylvia Farbstein says

    Kate, you are a remarkable person and such an eloquent writer! I had the pleasure of attending the panel that Chelley participated in and enjoyed hearing your perspective as well. As a mother of a 13 yr old son who is an LP, it is incredible what a connection I feel with you and Chelley. I appreciate the uncertain road your Mom faced when learning about her baby girl, and can definitely relate. However, we have come a long way and it is fantastic that Chelley has started this insightful blog. I feel fortunate that our paths crossed at the LPA Conference and hope to read many more wonderful pieces that each of you will write!

  2. says

    As someone who has little to no experience with LP or dwarfism, except through this excellent blog where I learn so much from Chelley all the time, I want to thank you for this very eloquent and important piece. I am truly learning. And I’m sure others are, too, thanks to your willingness to share and educate us.

Trackbacks

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

CommentLuv badge