Tuesday, June 12, 2012

Elsie Lacks

In 2005 I went to Armenia for 3 weeks with a group from my college.  Before the trip, while sitting in the small living room of our team leader's apartment, we feasted on Lahmejun, or Armenian pizza. We squeezed juice from fresh lemon wedges onto cheese-less grilled flat bread, smeared with ground lamb, tomatoes and seasoned to perfection. Prepared by our faculty advisor, Dr. Leona Mirza, we munched away on a dinner we could expect to enjoy while traveling as she told us more about the country.

Lahmejun - Armenian Pizza
Our Armenian pizza night was less than a month before we were to leave and I still didn't really know anything about the place. We had had a few informational sessions, but nothing substantial stuck with me. That was my fault. My college self was uninterested in retaining knowledge and I rarely thought about my surroundings or education.  I was an extreme slacker. But, I did understand pizza, even the Armenian kind. So as Dr. Mirza listed off our itinerary, I was able to imagine the mountains and cafes we would visit and the babies we would hold. We were going to work at an orphanage and bring much needed supplies for the children. Halfway through our dinner she announced the orphanage we were going to volunteer for had changed. Instead of helping care for infants and toddlers, we would be spending our time at The Children's Home of Kharberd; a home for kids aged 6-18 with mental and physical special needs. 

"Ugh" was my first thought as I swallowed more pizza. This was not the scenario I had signed up for. I wanted babies in China! Now I was going to a place I couldn't even locate on a map to work with older kids with special needs?! We were we were told we could opt out of the trip if we weren't comfortable with this new plan. Honestly, I was not comfortable. I had never been at ease around kids who were "different". We weren't supposed to be, right? They were kept away from us in school and when I was growing up some of my friends parents threatened to move when they found out a group home for disabled adults was moving into their neighborhood. But I couldn't back out based on prejudice. At the very least, I was developed enough to know that was not the type of person I wanted to be. So, I planned on going even though ever fiber of my being was not looking forward to it on any level. 

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HeLa Cells
In 1951, Henrietta Lacks developed a fatal case of cervical cancer. She died a year later at the age of 31 but her cancerous cells were the first to be kept alive and successfully duplicated. They are known as HeLa cells and their study has resulted in numerous medical progressions. After her death, Henrietta not only left her cells behind but also her five children. Her eldest daughter was Elsie.

Henrietta Lacks
Had Henrietta's cells not been taken from her without her permission, studied, and successfully multiplied, we would never have known of her. Even more so, we would never have known of Elsie. Described by her family as "different", Elsie had significant health issues and was diagnosed with epilepsy. Henrietta took care of her on her own as long as she was able. Born in 1939, Elsie was the second of her 5 children with her husband, Day. He was her first cousin and they grew up together like brother and sister. They were married when she was just 14. Throughout their marriage, he gave her several STI's including vennereal disease and gonorrea. Before her cancer diagnosis, her doctors thought her symptoms were those of syphilis. Henrietta's life was difficult to say the least but having  a special needs daughter did not bring her down or make her anymore prepared to give her up. Even with all of the challenges she faced in her own life, she knew Elsie was more vulnerable. She made her care a priority without the support of her family or community.

Lacks brought Elsie to Crownsville Hospital Center when she was just 10 years old. She was the only one to visit her. After her passing, Elsie was forgotten by the rest of her family until her death in 1955 at just 15 years old. It was as if she had never existed.

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Rosie Pope and Margaret Cho on WWHL

Who LOVES Watch What Happens Live! with Andy Cohen? I do! I do! It’s just silly fun and not too serious. Andy has on all the “Bravolebities” (Bravo’s reality show cast members) and his personal friends like Jerry Seinfeld, Sarah Jessica Parker, and Dan Rather. Normally, nothing of substance comes out of the half hour program. It is meant to be a time waster; a wind down before bed. However, last night, Margaret Cho and Rosie Pope were on and something very uncomfortable to say the least, and rage inducing to say the most occurred.  
Pope is a maternity concierge in NYC and has a show on Bravo that follows her business as they help expecting couples learn how to become parents and take care of their babies. So natch (naturally for the breve (abbreviation) challenged) there was talk about motherhood and pregnancy. When Cho was asked about her own aspirations to become a parent, she joked about her age, 43, and how her fertile days were numbered. To quote her…
"My eggs are jumping ship. Seriously, they're like, 'last one out is a retard.'"
Oof. Pope and Cohen cringed as the audience uncomfortably laughed at her.  She sort of paused and looked puzzled about the controversy. She continued on and tried to explain herself a bit more...
"I get worried about that. As an older woman, I don't necessarily want to have a retard."
This time, Andy just looked straight up annoyed. When she asked if she can't say that, he said, no, you can't say that. The show continued on.*

Personally, I’ve been trying really hard to eliminate the “R-word” from my vocabulary. “Retard” has become the derogatory slang word du jour. It is widely considered to be highly insensitive. I’m doing better but have had an embarrassing slip up here and there. Sometimes it can be difficult to understand why we shouldn’t use certain words if we don’t mean to be offensive to the particular group they label. In my world, “retard” could have been interchanged with “dumb” or “stupid”; hollow fillers used to express irritation with a situation. Much like the way I used to use to the word “gay” until I realized how insensitive it is to use a word reserved for a specific community as a frivolous insult. As I have become more enlightened, I have eliminated using hurtful language regardless of my intent which is why you’ll never hear me describe something annoying or negative as “gay” and/or ”retarded”. For me, this is growth. 

Popularized PC
Political correctness can be tricky since our language is always evolving. “Dumb” and “lame” are offensive as well but they are seen as relatively mild and don’t have a popular social campaign to eliminate them from our collective lexicon. It’s important to be mindful about these changing rules. Movements to bring awareness to words weighted with harmfulness usually originate with the population labeled by them. While some find PC rules to be annoying, that’s about the only negative for those not labeled by the demeaning language. This was a lesson I was reluctant to learn as well but at the end of the day the following quote on racism is on point in regard to this topic as well:
"Being anti-PC is not sticking it to the Man. It's sticking it to all the people whom the Man routinely stomps on." 
There is no harm in removing archaic insults when the result leads to sensitivity and understanding. And, BONUS!, you will sound a bit more intelligent when thoughtfully selecting your words. 

Cho’s word choice goes beyond slang and into the actual problem with the way we view those with intellectual disabilities, however. She is saying she doesn’t want to have a child who needs extra care. While her personal fears could be validated, or at least better understood with thoughtful conversation, she eliminates this possibility by using a harmful label that describes special needs children as undesirable. She is falling in line with an abusive precedent which is disappointing given her outspoken history against misogyny, homophobia, and gender roles. This incident certainly doesn’t erase her credibility as an activist, but her words do highlight why “kyriarchy” as an all encompassing oppressive concept needs to be embraced by progressives.
Feminists cannot simply be anti-patriarchy because women themselves experience many facets of privilege leading to different forms of oppression when left unacknowledged. Choosing to be anti-kyriarchy evolves traditional feminism beyond sexism to include any type of institutionalized discrimination or favoritism oppressing one group over another. In order to be truly forward thinking, we must take responsibility for our own role in the subordination of others especially when these groups call for change and action against our own behavior.
Read this portion of this entry on HelloGiggles!!!

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Crownsville Hospital Center
The way we label ourselves and other individuals matters.  Elsie Lacks was called "different and dumb" (there is that "harmless" dumb again) by the rest of her family and thus forgotten about after Henrietta died. No one visited her and her younger siblings weren't even aware of her existence until later in life. Henrietta visited her daughter throughout her illness and it seems if she had survived would have probably tried to find a way to care for her daughter outside of Crownsville Hospital Center. Her poverty, race, and gender left Henrietta without support because of the embarrassment surrounding Elsie. Without her loving and devoted mother, she had no one who cared about her. 

It seems many are guilty of this "out of sight, out of mind" attitude regarding those with differences we don't know how to fix or understand. This is why I was so fearful before my Armenia trip. A "home" for hundreds of kids with mental disorders!!? My able bodied, able minded privilege had led me to assume it would be an awful, miserable place; better left unvisited. Luckily, I went to Armenia anyway and was proven wrong. 
Teen's playing Super Nintendo!

The Children's Home of Kharberd was housed in an old Soviet concrete block, and while not the most pleasant physical dwelling, the inhabitants seemed to be happy. The friendly and excited staff (Americans don't visit often) showed us all around the facility and introduced us to all of the kids. Ignorance does not always equal bliss because I know this experience has opened my eyes to the goodness and happiness I didn't allow myself to consider before. Most of the children were not orphans in the sense that their parents had died, but were abandoned due to the immense stigma a disabled child stains a family with in their culture. All had mental or physical disabilities and many were afflicted with both. Most were bilingual and some multilingual, communicating with English, Russian, and Armenia. There were not enough resources for all of the kids to attend school, but the ones who were able to were being given the skills to not only learn reading and writing but to become more independent. This was a vibrant, lively place.
Therapy with staff

Most of the employees were women who were providing physical therapy, craft time, music lessons, and most importantly love and attention to all of the kids. We didn't spend all of our time in Armenia at the orphanage because we weren't qualified with the skills or education needed for the specialized care the kids required. But the time that we did get to spend there was very precious. Our project for the trip was to redo a community room for story time. We scrubbed off the powder paint (typical for Soviet buildings) and repainted the walls peach with one dedicated to a Mount Ararat/Noah's Ark mural. The Bible says that Mount Ararat is where Noah's Ark rests and you can see it's peaks from the children's home so the story has special meaning to Armenians. I was really proud of the finished results and hopefully it remains a cheerful room for the kids to read.  

Noah's Ark Mural
While I liked our time with the children and staff, the home is certainly not without problems. Most of the employees are underpaid, which can understandably cause tensions. Director, Dr. Harutiun Balasanyan, faces the incredibly difficult issue of what to do with the kids once they reach adulthood. Armenian law requires them to be committed to mental hospitals which are in abominable conditions. He is working to set up an adult home on the premises, but like everything else in the world, that requires funding that isn't readily available. Still, he remains optimistic for the kids and works hard to keep them from being bored. Providing them with projects not only to fill time but to teach skills is what he believes will help them in the future. 

Our team with the staff who took us to see the sites of Armenia
The Immortal Life of Henrietta Lacks
is a beautiful account of a woman who would have
otherwise been forgotten.
These types of trips always impact the ignorant privileged the most -  ie. me. While I hope our little mural brightens spirits here and there, I can't pretend I wasn't more affected by my time in Armenia than the people I met who live there. Which is okay with me. What do I have to offer them anyway? I can't pay for their needs or give my time because I'm too far away. It's taken me a while to write about my experiences because I know I haven't lived up to any of the lessons I have learned. I was affected in so many ways, it's hard to get it all sorted out in my mind. What has been a lasting effect is my new found appreciation for difference. I no longer have the same fears or prejudice toward people with disabilities. Admittedly, it took reading about Elsie through Henrietta's story to remind me of the full impact of my experience. These aren't people that should be forgotten. We all have a purpose, we all have a place which is why we should remember Elsie's life. She was important to Henrietta and her memory can be important to us. She is a reminder that there are many others like her deserving our respect and equality. 

The desire to incorporate those who are differently-abled seems to be spreading. My inspiration for this post came from an NPR segment about mainstreaming; having kids with learning disabilities in the same classrooms as kids without disabilities. It seems so over the top to consider this radical thought, however, it is rare for special education to not be segregated. Nowadays it seems our educational system is completely messed up and new problems occur so often there is no way we will ever solve them. It can be discouraging however, we are just in a time of acknowledgement. Instead of ignoring every issue we are starting to identify them. We would benefit from learning in an environment with people who have all different types of abilities. To say those who think differently or have special challenges can never provide growth or advancement is simply incorrect. Our cattle farming industry was revolutionized by Temple Grandin and had her mother not worked hard to make sure she got the education she deserved we wouldn't have the benefits from her extraordinary accomplishments. 

This is certainly not a simple problem to solve but maybe seeing it as a problem that needs solving is a giant first step. We have made improvements by closing such places as Crownsville Hospital Center and have a better understanding about the different abilities existing in those who are afflicted with intellectual challenges. But we can do more. As we break down barriers of discrimination regarding sexuality and gender, let's not forget oppression exists in varied and pervasive ways. We have a responsibility not only to recognize our own roll as oppressors but substantially contribute to resolve the burden we impose on those we oppress.    

* Just so everyone is aware, Cho has apologized profusely for what she said. She explains herself more on her own website!!! 

Architect Cornelia Oberlander's wheel chair ramp incorporated within a staircase. 
The research for this post comes mainly from reading The Immortal Life of Henrietta Lacks, watching WWHL, listening to NPR, and my own personal experiences in Armenia.