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Culture Clash: Down Syndrome, Disability Studies, Medicine and the Power of Research

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This blog is about research and its impact on the the average person. Not the impact of my research (which is doubtful!), but how others’ research has impacted me and my family. If you know me, or have read some of my blog posts that mention it, you’ll know that I have a young daughter with Down Syndrome (DS). Even before she was born, I was interested in how the disabled and disability have been viewed in our culture, perhaps due to growing up with two first cousins who were disabled. Later as a graduate student and young professor, I was struck by how negatively disability was portrayed in the literature I was reading and teaching, where it was largely a symbol of a deteriorated and stagnant society (think Lazarillo’s cruel master the ciego, of Pacual’s abused young brother in Cela’s tremendista novel Pacual Duarte or of the tragic Blasillo in Unamuno’s San Manuel Bueno Mártir). My discovery at a Modern Language Association (MLA) convention a few years back of the existence of «Disability Studies» spoke to many of my personal and professional experiences of disability, and it is a field I have followed with interest. Like me, many in the field have both scholarly and personal interests in it, such as past MLA President Michael Bérubé (who also has a son with DS).  Recently I have noticed some interesting and provocative connections between Disability Studies and an issue much in the news, blogosphere, and social media, with great resonance for me as both a parent of a child with Down Syndrome as an academic interested in disability studies–a possible cure for Down Syndrome..

The website of the Center on Human Policy, Law and Disability Studies at Syracuse University:(CHP) defines Disability Studies:

Disability Studies refers generally to the examination of disability as a social, cultural, and political phenomenon. In contrast to clinical, medical, or therapeutic perspectives on disability, Disability Studies focuses on how disability is defined and represented in society. It rejects the perception of disability as a functional impairment that limits a person’s activities.

The international and interdisciplinary Society for Disability Studies. sees disability as

…a key aspect of human experience, and that the study of disability has important political, social, and economic implications for society as a whole, including both disabled and nondisabled people. Through research, artistic production, teaching and activism, the Society for Disability Studies seeks to augment understanding of disability in all cultures and historical periods, to promote greater awareness of the experiences of disabled people, and to advocate for social change.

Thanks in part to the work of these researchers, artists, and activists, my child has a better life today than my cousins did.  Unlike 50 years ago, she has the access to a quality education in our local public school,  she is included in her community, and she has the possibility of developing her full potential as an individual. But she also has benefitted from medical advancements, and we owe much of  her success to their research as well. This is the tension all parents of a child like mine live with–between seeing disability as a condition to be cured, and accepting it as another expression of humanity to be embraced–and knowing when to lean towards one or the other position.  Again, from the Syracuse University CHP website:

…disability is not a characteristic that exists in the person or a problem of the person that must be “fixed” or “cured.” Instead, disability is a construct that finds its meaning within a social and cultural context.

This was precisely the surprising parent reaction to the news that researchers from the University of Massachusetts Medical School had discovered a way (although only in a petri dish so far) to essentially «shut down» the extra chromosone 21 responsible for Down Syndrome. NBC News is one of  many that has reported on the recent discovery and the mixed reaction to it..  In an article, parents were hopeful for a cure to some of the more frightening medical problems associated with DS such as heart defects and early onset Alzheimers. But many wondered if altering that extra chromasome would alter the essence of the person they loved. Quoting medical geneticist Dr. Brian Sotko (who has a sibling with DS) from the NBC article:

[I]t’s unclear what costs there may be to shutting down the mechanism that creates people who offer lessons in patience, kindness — and what it means to be human. (…) If Down syndrome were completely cured, the world would lose something from the absence of that culture.

It’s that last idea that I’ve highlighted that gets to the heart of the problem for many, and one that has me conflicted–as a mom of a child with DS, as a person who believes in the equal rights and acceptance of all people, and as an academic who studies how cultures represent themselves and their values through symbols.  To what extent is a person with a disability an individual, separate from her disability, and to what extent is she a cultural symbol? This is something my husband and I have come to realize about our daughter. To us, she is an individual, she is our daughter. We see ways she takes after me, or my husband, ways she is like her older sister, and the numerous ways she is her own wonderful self. But to the world, more often than not, she is a symbol.  Some call her an angel, and see in her a message of mercy and tenderness from Heaven (something her twin brother would argue with I’m sure!).  Others see their own fears in her–of imperfection, rejection, loneliness. I’m not denying the importance of these symbols in our personal lives and in our culture.  Symbols can be powerful things, and we humans can’t exist without them. But is there, should there be a DS culture, like some argue for (and against) a deaf culture? Is «curing» DS really just 21st century eugenics? I don’t know the answers to these questions. But I know that my daughter is my daughter first, and DS, although a constant reality in our lives, is secondary. And yet  that extra chromosone is in every cell of her body, in every part of her,and so, for now, DS is inextricable from her.

But that extra chromosone has been the cause of suffering for my daughter, and not just from the social stygma of being outwardly identifiable as a person with DS. She has suffered with the unfairness of the difficulties, struggles, and sometimes real physical pain that DS has brought her. Certainly, her suffering has been less than many with DS. She wasn’t born with heart problems or other life-threatening medical conditions that have required surgery and extended treatment. Still, everytime I’ve comforted her in my arms while a lab tech tried to find a vein in her tiny arm to remove multiple vials of her blood, every hour she’s had to spend visiting specialists and therapists instead of playing at home with her siblings, every recess she’s had to miss or cut short for testing at school, every sentence I’ve watched her methodically plan and execute so that others would understand her meaning clearly and every time her frustration spills over when they don’t, every homework assignment that took her an hour to complete when her twin finished in ten minutes–these are all times when my daughter Eva has suffered unfairly because of DS. Things that come so easily to her siblings, Eva has struggled to achieve–from sitting up and walking as an infant, to speaking as a preschooler and learning to read in elementary school. DS sometimes seems like this physical weight on her that makes it harder to move forward, and yet it has taught all of us in our family important lessons about love, patience, and perseverance. The weight of DS may have slowed Eva down, but it hasn’t held her back, and she is happy and thriving and wonderful. We accept DS. It is our reality for now, and we’ll keep fighting for her, and encouraging her,and sometimes pushing her to be her best, whatever that may be.  We have researchers in Disability Studies to thank for helping to change attitudes in our ability-centric culture, making much of this possible for Eva. But its not an either or for me. If medical research can find a way to limit or even eliminate my daughter’s struggles with DS, and prevent that pain for other children in the future, I’m ready to embrace that too.

Eva in my office