I am an invisible man.

Today, one of my colleagues informed me that Chris Layo, a Communication and Creative Writing double major at SUNY Potsdam, passed away on Friday.  I cannot adequately express just how terrible such news is, so I won’t even try.  Instead, I will write a post where I try to do justice to my experiences with him.

I first met Chris Layo in the spring semester of 2012, when he enrolled in a section of Literary Analysis and Research.  This was my very first time teaching this class, and I was rather nervous. Like many classes in our curriculum, this class has rather vague parameters, and I used it to introduce students to literary theory (no easy task, as those who regularly teach theory will understand).  I had my syllabus set, my assignments mapped out, and a fairly rigorous schedule set.  I did all this because this was my first time teaching this class,* and I was worried about something injecting change into my plans.  And while the following is not at all flattering and I am not at all proud, I’ll include it because it is honest: many of my plans changed when Chris Layo entered my classroom.  And my first thought, “damn, this is going to make my job harder.”

Chris relied on an electronic wheelchair and full-time medical attendants**, one of whom always attended class with him.  I was familiar with the university’s accommodations for such students, and I knew that my carefully-planned class would need to change, and that worried me.  Of course, I feel like shit admitting that, but it was true.  And sadly, I know I was not alone; one of the first things Chris told me after class that first day was that he knows that his presence in a classroom forces changes on how that class operates, and he was sorry for the disruptions he knew his presence would cause.

Take a minute to reflect on that: he was sorry for how his disability would affect my class.  One of the many lessons his life taught him was the necessity of apologizing for simply being present in the room.  Please take another minute to reflect on that before reading further.

What I learned very quickly after that was that Chris was, without question, one of the most thoughtful readers I have had the pleasure of working with.  Part of this was out of necessity; he simply didn’t have the ability to pick up a book and re-read passages on a whim.  So when he read a book, he read with care and deliberation.  Part of this was out of respect for language; as an accomplished public speaker and advocate for people with disabilities, Chris knew how important language was as a tool for changing the lives of others.  As a Creative Writing student, he was conscious of how his own language would be scrutinized by others.  It is for this reason that he was also a very careful writer, taking the time to make sure that what he put to paper was exactly what he intended.  As a result, he was also one of the most thoughtful writers I have ever worked with.  This is not to say that he was one of the most successful writers, if we judge success based on grades.  Again, in the interest of honesty, some of his work was less successful than the rest.  However, where he stumbled in his work was due entirely to a desire to take risks, to do what had not been done before.  Chris used his writing to challenge, to explore, and some explorations are more fruitful than others.***

Chris was also a very engaged participant in classroom discussion, particularly in challenging our understandings of the literary texts, and pointing out the limitations of various literary theories.  Rather than address them all, I’ll take one significant example:

I have read Mary Shelley’s Frankenstein many times, and have taught it more than once.  I use it for this class (and have continued to use it) as a text that allows students to work with various literary theories.  (In particular, students often find it a fabulous vehicle for exploring various aspects of Feminism and Queer Theory.)  In all the times that I have read it, never once have I considered it a statement about how medical interventions change the nature of the human condition.  And as Chris pointed out to me, that’s because I never had to.  As an able-bodied person, I have never seriously considered the ways that advances in medical technology have forced people to rethink what it means to be human.  Certainly, I have benefitted from medical advancements.  As a child, I spent much time in the hospital as a result of asthma attacks.  But asthma was something I had, not something I was.  (Nor am I in any way trying to equate our situations.  Rather, I’m highlighting that I had – and still have – only a passing, circumstantial relationship to the medical profession.)  In his discussion of Frankenstein, Chris highlighted the difference to me, and to the rest of the class.  The monster, Chris argued, was struggling with what it means to be human as a result of being altered by advances in modern medicine (keeping in mind that the monster was built out of parts of corpses, and animated by a scientist looking to discover how to bring back the dead).  In his terrifying size, altered coloring, and dependence on a doctor who, immediately after “treatment” abandons him in fear, the monster represented to Chris the very condition of those whose lives depend on a medical establishment that both treats and dehumanizes people with disabilities.  Having done nothing wrong, the monster is first abandoned, then despised, then driven to exile.  Certainly, the monster kills, and that is wrong; however, the monster does so only after it is made clear to him that he has no place in the world of able-bodied people.  Once seen, he is feared and despised.  Once seen, he is made to feel inhuman despite, as I and the students in my class came to see, all the evidence to the contrary: the monster is made of human flesh, possesses powerful human emotions and a sharp human intellect, and his only desire is acceptance in a human society that never tries to understand him.

Scroll back up, and again take a minute to reflect on Chris’s apology for any possible future disruptions.  Disruptions that, I’m glad to say, never came to pass.  At no point during the semester did I notice any disruptions.  I’d like to think that the students at SUNY Potsdam are a wonderful group of people; I also know that many of them knew Chris personally or at least knew of him.  (As I mentioned above, he was pursuing two majors in my department, and in that time had made a positive impression on countless students and faculty in the department, and at the university.)  And over the course of the semester, I came to rely more heavily on Chris’s contributions to discussion, because he would always highlight something I had never considered.  When did Feminists begin to address notions of disability in their work toward social and political equality?  Why does nobody seem to pick up on the ways that authors use the language of physical disability to convey ideas of the monstrous and inhuman?  Why does SUNY Potsdam do such a poor job of accommodating people with disabilities?^

That last question goes to Chris’s efforts to help raise awareness on campus and in the local community more generally, regarding issues for people with disabilities.  As his biographical statement below notes, Chris is no stranger to advocacy and litigation.  Nor was he ever one to keep quiet, whether he was facing a legal battle or discussing a 19th century novel.  He brought his critical acumen, as well as his passion for making a positive impact on the world, to all his endeavors.

The last time I spoke with Chris, he told me of his desire to raise awareness for disability issues on campus.  He planned to speak, to invite outside speakers,^^ and to work on behalf of students with disabilities.  I’m sorry to say that he was not able to realize all of his plans.  However, I hope that his efforts will be continued by those who knew him, by those who realize the importance of such efforts.  In my own small way, I have become more interested in and engaged in such efforts on campus (and in academia more broadly), thanks in large part to Chris, and various other people involved in such efforts.^^^

In the spirit of this blog, I could end by noting that Chris forced me to be more creative in my ourse designs for the future.  But that’s not the point of this post; that’s a secondary concern.  The point of this post is that I met a young man who worked very hard to improve the conditions of others, in large part because his own condition had forced him to recognize some very ugly truths about the world in which we live.  He also brought to the discussion of literature (and, I assume, all cultural products he engaged with in his classes and his larger life) a viewpoint I had not before conceived of, with profound effects on how I and the rest of my class read, thought about, and wrote about canonical texts.

But most importantly, he brought to class a compassion, critical insight, and intellectual rigor that others should be envious of.  He was a good man, and he will be missed.

*As I become more experienced with certain classes, I allow for much more freedom and possible exploration.  In such cases, the syllabus becomes a guide rather than a set of guidelines.  But I digress.

**The following is a short autobiographical statement written by Chris himself in 2010 (with thanks to Valeria Souza for allowing me to use it here):

“My name is Chris Layo. I’m a disabled 25-year-old college student with Duchenne Muscular Dystrophy, which is a muscle wasting condition that left me wheelchair bound and totally dependent on 24 hour care. I have been living in my own apartment with 24-hour care since theage of 19, through the Consumer Directed Personal Assistant Program (CDPAP). This vital program allows me to manage my care, by hiring, training, and supervising my own personal care aides. This program is essential because it gives me a lot of independence, and allows me to live a fairly normal life in my community. As of now I go to college at SUNY Potsdam where I’m a junior working toward a double major in communications and creative writing. I want to become a public speaker and a writer that deals with disability issues. My life experiences have made me into a strong disability advocate for myself and others. I try not to let my disability keep me down, and I try to live my life to the fullest. Here are some of my accomplishments:

-In August 2004 I became the first disabled person ever to live on SUNY Potsdam campus that required 24-hour care, after a lengthy battle, with housing, and other campus agencies.

-In 2008 I successfully fought and won a case with the help of Legal Aid Society of Northeastern N.Y. against the Department of Health. This happened when they said that personal care aides could no longer transport consumers places with the consumers own vehicles, leaving those inrural areas stranded in their homes. Winning this case resulted in me getting an award for mywork from the Consumer Directed Personal Assistance Association of New York State.

-I serve on the Consumer Directed Personal Assistant Program board.

-I routinely do public speaking for organizations, churches, classes, and on advocacy.

-This year I wrote a paper that allowed me to win the Eva Straight-Dean scholarship, which was a real honor because it recognized all my hard work.”

***In this regard, Chris was the opposite of the students I lamented in my previous post.  I could use many words to describe his work, but “safe” would never be one of them.

^The building I teach in has such narrow hallways that students in motorized wheelchairs – and Chris was certainly not the only student who employed a motorized wheelchair in our department, or on campus – cannot navigate them without difficulty.  Maneuvering into and out of offices can be a time-consuming ordeal.  There are plans to renovate this building, but we are not a priority; as I understand it, a new student center and other renovations – not to mention a new performing arts center – are much more important to the campus.

^^In the spring of 2012, my good friend Valeria Souza came to campus to speak about representations of Multiple Sclerosis in 21st-century discourse.  Chris attended that event, and had a lively and thought-provoking conversation with Valeria afterwards (a discussion I learned a great deal from).  He later told me that he admired her for her work, and hoped to help bring attention to the various ways by which people with disabilities are made invisible on campus and in our society: from ignoring them, to speaking on their behalf (and I do apologize if it seems that I am doing just that with my post), to working against their interests, to encouraging physical separation from able-bodied society.

^^^These people include Valeria Souza, Jane Dryden, Jay Pecora, John Youngblood, Joshua Eyler, and countless students who in their various ways have helped me to see what I had previously been blind to.

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