Why DAC?: A Personal Reflection

Written by Alyssa Carbutti, with support from the DAC team

Recently I was asked by the members of my DAC team to participate in a group conversation about what DAC means to each of us. I gave a short answer, but I realize now that I really wrote about what I hope for DAC to be, not why I want to be a part of it myself. 

On this shared document, I wrote:

“For me, the DAC blog is a home—warm with the orange tones of autumn, crows cawing up in the branches. Branches of education, activism, conversation, and storytelling. It’s a space for all the voices of our disabled community to come together in the safety of our nest. To simply exist—with no judgment or stares. 

Stares—we’ll leave those for the eagles. Us crows will teach you how to watch—how to notice the differences of the world and get curious, ask questions, learn how to simply just love. Nobody is born hating or denigrating: that’s something taught. 

I hope you hear our voices calling, and you come to join our song. We want to wow you with your own shiny thoughts. We hope to fly far, reaching many great distances.

This is your invitation to join our festive flock.”

What I wrote above here is a somewhat poetic summary of how I wish the world treated/viewed people with disabilities. A safe space that I wish was around sooner—that I could find and fit into sooner. 

Why I want to be part of DAC is a longer story than this little blurb about my wildest hopes and dreams for a perfect world—perfectly imperfect.

I am ashamed of myself. I’m ashamed that it’s taken me twenty-one years to feel comfortable with the term “disability.” The term itself is composed of negative language—it screams a lack of ability: a “dis” to the person it’s attached to. I hate feeling limited. For a long time the word felt like a limit—a label to keep me in a box, the world taunting me from outside the constraints of four lines. 

A class I took on disability studies last semester with my dear friend Professor Brenda Brueggemann flipped my world upside down (the course was American Studies/English 2274W: Disability in American Literature and Culture at UConn). The term “disability” transformed into this beautiful community of belonging for me. One of my favorite pieces of literature that we engaged with in conversation for this class was the New York Times’ collection About Us: Essays From the Disability Series. I was particularly struck with the essay “Becoming Disabled” by Rosemarie Garland-Thomson. This piece includes a line that reads, “I don’t think of you as disabled.” What I wrote for class in response to this piece was that:

“I love this line because it comes across as so innocent but it holds so much power in displaying the prejudice against disabled people in society. This is meant to be a compliment, that the person presents as very able-bodied or not disabled enough to register under the immediate judgment that comes with the label of disability. Yet this is an insult because not seeing someone’s disability is not accepting all of who that person is. This line means a lot to me personally because although I am in remission now, I do technically still have an autoimmune disorder and that is something that is deeply a part of who I am and why I exist the way I do/understand the world the way that I do. Even when I was experiencing the symptoms of my disorder, before remission, my autoimmune disorder was invisible to the naked eye. I hid the pain and found ways to compensate for a lack of mobility in my left leg when it would flare up. I did not realize that my autoimmune disorder even qualified as a disability until only recently. This is still a hard concept for me to accept because I never felt like I had a sense of belonging. I was always just floating but I never felt “disabled enough” in a sense to accept the label. I remember asking my mom if we could apply for a handicap pass in high school because when I would have flare ups it was very difficult for me to walk on flat ground, let alone stairs, and my leg would give out a lot. Her response was scoffing at me and scolding me, as if I could even suggest such an idea. I didn’t need a pass because I wasn’t disabled and those passes were for people with “real disabilities.” I think in this aspect, even though I am in remission now, I am having my own version of “becoming disabled” in accepting that label for the past that I experienced and struggled through. 

I went for my yearly check up this past July. My rheumatologist was quite surprised to hear the tumble of word vomit that came out of my mouth after he asked how I’d been. I was unusually happy and energetic at this particular visit. When I had finished speaking he seemed quite shocked and said, “Wow, I never knew how much this experience affected you.” This was quite shocking to me because dealing with this autoimmune disorder completely rattled my life for eight excruciatingly long years, physically that is—I’m still dealing with the mental repercussions. I’m sitting there thinking why the hell would it not affect me so deeply? I guess that from his standpoint he is viewing me in a scientific manner opposed to a more humanistic understanding of my experience. To him I am medical. I am research. I am a mystery. I am a guinea pig. To him I would come in routinely and explain my symptoms, tell him if the medications were working, if I had any side effects, and then we’d go over my bloodwork together. I was a name on a schedule, part of the routine. But what about my daily routine? What about my limitations? What about the struggles and raw emotion that I experienced? Does that not matter? To him my disorder was a part of who I was. He did not understand that my disorder shaped who I became. This is where the “becoming disabled” line hits home for me. I never had the resources to label what I was or what I was going through during this time in my life. It wasn’t until I started interning for an academic journal, Disability Studies Quarterly, under Brenda, that I realized I was part of the disability community. Finally, I was able to connect with a group of people that shared similar emotions of the “disabled experience.” It is a different experience talking to a therapist about trauma versus talking to or reading about someone with a disability that you can relate to. It is a different version of being seen. The entire time that I read the stories from ABOUT US, I just felt so seen and so touched. I wanted to hug and rally around the authors and tell them I SEE YOU, I SEE YOU. I see you and I see myself in you. I still feel like an imposter sometimes while I have these thoughts and form these relations surrounding disability. I still don’t feel like I was ever disabled enough. I think part of this is due to stigma in our society, lack of education regarding what disability actually qualifies as in our schools, and just the general downplaying of my experience in my personal life. I also feel guilty a lot of the time when I feel connected to the emotions of people with disabilities because I am in remission now. I don’t know if I ever did or still do qualify as being part of this community for sure. If I was part of the disabled community when I was experiencing the symptoms of my disorder then am I not part of the community now that I am “better”? Remission is a strange thing because it is a gray area of separation but it isn’t a concrete promise that you are completely better. My doctor assured me that hopefully my disorder will never reappear but he can’t promise me. Medicine can’t promise me. I guess what I wonder is: is there such a thing as becoming undisabled? I feel that I only “became disabled” after I was in remission and really processed my emotions, but technically shouldn’t I be “undisabled” now?”

Looking back on this short composition that I wrote for this class, I can see the reluctance to accept the label. I was still adverse to fully connecting myself to the word “disability.” I would make a connection, but then shy away a bit, giving some distance—invalidating my own disabled experiences because I didn’t feel they were disabled enough. I was fooling myself, refusing to give  my experiences the full understanding that they deserve. Now I am more comfortable with the term. The challenge for me now is trying to decide the logistics of where I fit into the disabled community in remission. I still have the disorder but not the symptoms. This makes me feel really weird claiming the label in my current age because now I have the abilities that I used to lack. But I do still have those disabled experiences of my past. I have a lot of unresolved emotions that pertain to my experiences of being disabled that I am only now tackling through reflection and writing. 

I want to be part of DAC because I feel safe showing the vulnerable pieces of my life. I am accepted for who I was, who I am, and encouraged in who to become. I am not expected to forget my past. The people on my DAC team, and in this disabled community of our blog site, understand that.