Cecil-Lemkin 1 Restrictions on Language for a Disabled Graduate - - PDF document

Cecil-Lemkin 1 Restrictions on Language for a Disabled Graduate Student Ellen Cecil-Lemkin • Florida State University • emc15j@my.fsu.edu As a graduate student who has a disability, I must constantly negotiate whether I will “out” myself as being disabled. This act is particularly contentious because I have an invisible disability (generalized anxiety disorder with panic symptoms and major depression), which is often met with stigma. That stigma could have

• thers read me as unfit for academic work because of my “tumultuous” mental state or have me seen as lazy for

not meeting deadlines or completing the same amount of work as my colleagues. For example, I am in my third year of my PhD program and everyone in my cohort has completed their prelims… except me. I’m still trucking along trying to complete my prelim readings as I battle anxiety, depression, panic attacks, switching medications, withdrawal symptoms, etcetera etcetera etcetra. Even with the contextual factors, I could easily be read as a lazy graduate student using my disability as an excuse. On top of all of that, I have additional stigma place upon me because I depend upon the emotional support and services I receive from both my emotional support animal, Maple, and service dog in training,

• Rosie. My companion animals assist me in managing my anxiety and deescalating my panic attacks, as such,

they are crucial components in maintaining a healthy mental state. Unfortunately, current discourse around emotional support animals or ESAs often position users as not “disabled enough” and “gamers of the system” who just want to be able to bring their pet into places they shouldn’t be—like airplanes. This positioning poses challenges for me as I attempt to navigate new spaces and decide whether to “out” myself. Before I began training my service dog, it was easy for me to pass as abled and I had the agency to determine when and how I would identify myself as disabled. However, outing oneself is both emotionally taxing and risky. Regardless, I often feel both compelled and obligated to do so, because my work in disability studies has shown the societal benefits of being open with my diagnosis and advocating for myself. The overall belief is that doing so will lead to a more accessible and accommodating system for people with disabilities in the future. Nevertheless, it is still an extremely uncomfortable position to place myself in. I foreground my presentation with my disabled identity because I’d like to discuss how graduate students’ language is restricted when they advocate for disability-related accommodations. Doing so, I believe, will show some of the challenges disabled graduate students face when outing themselves as disabled and advocating for reasonable accommodations, and to illustrate how the far the field still needs to go for equitable treatment for disabled scholars. To accomplish this, I’d like to share with you a story featuring Maple and myself, where I attempted to gain accommodations at an in-field conference. But, before I delve into that, I’d like to pause and differentiate between ESAs and service animals, since I have found that many do not know the differences between the two and this contextualization will help us better understand the following narrative. An ESA is an animal that provides emotional support to a disabled person. The animal is not trained to perform any specific tasks, it is not trained in public access, and it cannot go into buildings where animals are not typically permitted. However, according to the Fair Housing Act, ESAs are allowed access to housing and hotels where animals may not usually be allowed as long as you provide documentation from a mental health service provider. And, as we have learned from extensive news coverage, ESAs are permitted to travel aboard aircrafts, sometimes without an additional traveling fee. On the other hand, service animals, as defined by the Americans with Disabilities Act, are “any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability […] The work or tasks performed by a service animal must be directly related to the individual’s disability. […] The crime deterrent effects of an

Cecil-Lemkin 2 animal ́s presence and the provision of emotional support, well-being, comfort, or companionship do not constitute work or tasks for the purposes of this definition” (ADA 33). Service animals do not require any documentation or registration to enter into public spaces and legally there are only two questions someone can ask about a service animal. One, “Is this a service animal?” and two, “What tasks are they trained to perform?” That’s it. So, to summarize, ESA are much more regulated and restricted than service animals. ESAs are not trained in a specific task and they need to be prescribed by a mental health service provider. But both help disabled people enormously, but in distinctly different ways. Okay, so back to my story. To begin with, I was accepted to a conference that provided on-campus housing for a much smaller fee than the local hotels charged. As a graduate student, I was immediately drawn to this option because of my limited access to travel funding. I emailed the women in charge of the on-campus housing and explained that I would be traveling with a documented ESA. She emailed me back to inform me that, regardless of my documentation, the on-campus housing did not allow pets. When I read the email, I felt frustrated, hurt, and—of course—anxious. I knew traveling to the conference would be nearly impossible for me if I did not have my ESA with me. Consequently, I immediately reached out to my major professor for guidance, Michael Neal. After I finished explaining my situation, Michael recommended that I contact the chair of the conference to see if she would help advocate for me. He cautioned me, though, in how I worded my request, since I was a graduate student and stepping on people’s toes could negatively impact me when I entered the job market. This suggestion—to move cautiously around those with power—is advice that I know many graduate students have received and it’s not something that just disabled graduate students have to navigate. It is a position that many

• f us are placed in. Don’t rock the boat. But, this is particularly tricky when your existence as a disabled

academic creates waves by disrupting a system that wasn’t made to support you. The academic institution, while attempting to make necessary shifts, is still primarily centered around the white, heterosexual, upper- middle class, male, and abled body/minds. Michael also recommended that he talk to two of the senior Rhetoric and Composition faculty members to make sure that going to the chair of the conference was the correct move to make. Looking back over the emails I sent to Michael, I’m reminded that it took us over a week to connect with the senior faculty and to write several drafts of the email to the chair. Here’s what the email ended up saying: I'm emailing you about the conference in regards to an accessibility issue that I thought you would like to be aware about. I am a Rhetoric and Composition graduate student at Florida State University and I identify as having Generalized Anxiety Disorder with panic-like symptoms. Part of my routine to manage my anxiety and panic symptoms involves traveling with my emotional support animal, a dog by the name of Maple. Just in case you're unaware, emotional support animals are animals that provide comfort and support in forms of affection and companionship for an individual suffering from various mental and emotional conditions. To get to the point, this year I will be presenting and attending the conference. As such, I was hoping to make reservations with the on-campus housing. Therefore, I emailed Ms. X to inquiry about housing and to find out what type of documentation they would need to verify that Maple is, in fact, my emotional support animal. However, Ms. X informed me that they would not accommodate Maple and me regardless of my documentation. I found this to be rather disheartening, so I began to look into some alternative options. However, these accommodations are either far away or outside of my budget as a graduate student. As such, I would

Cecil-Lemkin 3 really appreciate your recommendations on how I should proceed. Ultimately, I’m not happy with the email, especially the last paragraph. To me, it feels weak and

• passive. Especially when I compare it to my first draft which essentially said, “Hey, here’s what the ADA says,

therefore what housing is doing is illegal, and I’d like you to do something.” This email, I think positioned me more as the well-meaning, good-behaving disabled. The subtext of this email is that I’m not here to cause trouble, but it would be really great if you could tell me what the right course of action is. Additionally, I almost feel like I had to apologize for my existence. Theoretically though, by taking this stance, I protected myself from potential negative repercussions, which I wouldn’t have had to do if I wasn’t a graduate student preparing for a job in academia. So, when I got an email back from the chair that essentially said, “I talked to housing and sorry, there’s nothing I can do,” I wasn’t really surprised. I was disappointed, frustrated, sure. But, I wasn’t surprised. I hadn’t taken a strong rhetorical stance that clearly articulated that this policy was unethical and, according to my understanding of the law, illegal. Instead, I had taken a safe route, which undermined my goal for accommodations. I decided then that I needed to take a stronger stance in advocating for myself. I decided to get a lawyer

• involved. Which, let me point out, was NOT an easy decision. I hate conflict, there’s a lot I will do to avoid it.

When faced with standing up for myself or stepping down, I’m type who will step down. But, I felt that it was my duty to take a stronger stand than I was comfortable with. I felt that my actions in dealing with this situation could have implications not only for me, but for other people with disabilities who attempted to get access to accommodations with this conference and others in the future. So, I got a lawyer involved. Luckily, my husband and I are friends with one and she agreed to write a letter to the housing department. If I hadn’t had this connection, I’m not sure that I would have gone this far. As we all know, graduate students don’t have a lot of money and getting a lawyer involved is not cheap. But, I was fortunate enough that this avenue was open to me. However, the lawyer’s letter and documentation from my mental health provider did nothing to sway the on-campus housing department. They sent a letter to the chair of the conference to forward to me to say, “Here’s this small loophole in the FHA, so legally, we’re not required to accommodate you.” And, again, I found myself meeting with Michael. I felt lost and out of options. So, Michael presented me with three possible avenues: 1) publically shame the conference on the WPA listserv, 2) attend the conference without taking additional action, or 3) withdrawal from the conference in protest. Each of these

• ptions seemed extremely risky. Going down route number one, for me, seemed like the riskiest option and I

had already used up all of my outspoken energy. Even when Michael offered posting it the WPA listserv himself and keeping me anonymous, it still didn’t seem like an appealing option. Route number two seemed risky because it felt like I was backing down from my ideals and giving in to discriminatory behavior. And route three seemed risky because it could impact my job market search since it would be a line I had to remove from my CV and my name was already in the program. But, after some consideration, route three seemed like the option that best worked for me. When I finally got to this decision, about a week had past and it had been two months and ten days since I started this whole process. In the interim, I had already applied and was accepted to be a part of this panel to give this presentation. The semester had wrapped up, grades were in, and the break had official begun. So, with two months to go before the conference, I began writing an email to explain that I would not be attending and

• why. However, as I was carefully drafting this email, I got an email from the chair of the conference that on-

campus housing had decided to change their mind on their original decision. They would allow Maple to accompany me.

Cecil-Lemkin 4 Perhaps naively, I thought this declaration allowing me to bring Maple would be the end of this saga. I would be able to go to the conference, blend in as any other conference goer, return to my room for frequent Maple breaks, and no one would be the wiser as to why I had a dog in my room. I was mistaken. When I got to the conference, I made it a point to seek out the chair of the conference to thank her for her assistance. Even though I felt disappointed by the chair’s lack of advocacy on my behalf, I felt that I needed to continue playing the role of the nice disabled lady in order to reinforce positive associations with disabled

• academics. So, I sought out the chair and introduced myself. She immediately knew who I was and thanked me

for advocating for myself and getting a lawyer involved. She intimated that if I hadn’t, she didn’t think that the university would have changed their decision. She didn’t agree with their stance, but “the policy is the policy” and she couldn’t do anything about it. I was struck by this language, “the policy is the policy,” and the thought If the policy is unethical, should you still support the policy? The comment rolled around in my head, unable to move past my lips. Instead, I smiled and I said I understood. I couldn’t break character. She then proceeded to tell me that in order to get permission to allow me to bring Maple, the university had contacted everyone in the dorm I was staying in to ask them if they would be comfortable with an emotional support animal in the

• building. I was shocked. No one had asked my permission to reveal my status as disabled and no one had

informed me of this before I arrived. I felt acutely exposed and vulnerable. Someone had taken away my agency in determining who and how I disclosed my disability. Something no one has the right to do. So, what can we learn from my experience? What I think my story brings to the forefront is three things: 1) we still have a long way to go in creating accessible spaces, 2) graduate students with disabilities are constrained from employing certain rhetorical moves to advocate for themselves, and 3) invisible disabilities are

• ften forgotten or further stigmatized because there is no way for the perceiver to visibly quantify the disability.

There’s no clear cut, easy answer or solution to this problem, in part because disabilities are so diverse and multifaceted and what works for one person doesn’t necessary work for another. Moreover, I feel that it is unfair to place the burden of emotional labor on disabled individuals to out themselves or educate others, regardless if they’re comfortable with disclosing or not. And, furthermore, I feel uncomfortable offering definitive solutions since I’m just one disabled person and there’s no way that I can speak for every disabled experience. However, I would like to make a few small recommendations and point to the C’s Committee on Disability Issues’ work to make this conference accessible. You can learn more about this by going over to the Access table, which is located right next to registration. Currently, from my experience, it seems that this committee’s impact on accessible conferences has been limited to C’s. However, the recommendations that they provide are applicable to other conferences. And so, I would encourage other conferences to apply their suggestions and consult with disabled academics on ways to make their conferences accessible. Furthermore, I believe that it’s important to actively resist and stand-up against unethical policies that further ostracize disabled

• people. In sum, be our allies.