My world is disabled. My world is nerdy. My world is curious.
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I write about disability: how it is represented in my own life, its representations in Children’s/ YA Literature, disability and education, and disability in pop culture. If my work inspires you, helps you, informs you–great! If not, that’s okay, too. This website exists to help me keep doing the things that I love most: writing, learning, and making connections with others.
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My lived experience as a disabled, bisexual, Jewish man hasn’t always given me feelings of pride and purpose. But through social media, I am able to educate peers, colleagues, and family members on disability rights issues and connect with other disabled individuals.
This article appeared in ModelViewCulture.com’s Quarterly No. 4 (December 2016)
I’m a millennial: I spend a lot of time on the Internet. I’ll admit that I mostly use the Internet to watch Netflix and YouTube, as well as keep up with various social media platforms. But I also read a lot online; everything from funny lists on Buzzfeed to scholarly articles published in my favorite research journals. However, in the past year or so, I have tried to make a more concerted effort to be aware of current events and politics. One of the ways that I have been doing that is through reading The New York Times.
This year, The Times has taken a strong interest in giving a voice to disabled people like myself; Rosemarie Garland-Thomson (RGT), a pioneer in the field of Disability Studies, kicked off The Times’ weekly Opinion series focused on disability with an article entitled: “Becoming Disabled.” (If you have not yet read it–go do it and then read everything RGT has written). Having previously read RGT’s work, I was thrilled to see her voice being brought to the forefront of such an influential publication. But more strikingly, I was overwhelmed with my reaction to the piece.
I have written before on my experiences as a disabled person living and working at educational institutions both at the undergraduate and graduate level. RGT’s article goes beyond those experiences for me, encapsulating much of my lived experience as a disabled person. Yet, what stood out to me most in the article was the last line of her piece: “Becoming disabled means moving from isolation to community, from ignorance to knowledge about who we are, from exclusion to access, and from shame to pride.”
I read that line and then was thrown into an existential crisis of sorts: Do I belong to a greater disability community? I thought about that for awhile, spending time on Youtube repeatedly watching Ben Platt, of Pitch Perfect and Book of Mormon fame, perform “Waving Through a Window” from the soon-to-be Broadway musical Dear Evan Hansen. According to the show’s Facebook page: “All his life, Evan Hansen has felt invisible. But when a tragedy thrusts him into the center of a rapidly evolving controversy, he is given the opportunity of a lifetime: the chance to be somebody else.” Justin Paul, one of the writers of the music and lyrics, explains in a Youtube video that “Waving through a Window” was an exercise in discovering Evan’s sound–“the sound of loneliness”:
“On the outside always looking in/
Will I ever be more than I’ve always been?/
’cause I’m tap, tap, tapping on the glass/
I’m waving through a window/
I try to speak, but nobody can hear/
So I wait around for an answer to appear/
While I’m watch, watch, watching people pass/
I’m waving through a window/
Oh, can anybody see, is anybody waving/
Back at me?”
The song lyrics reached me: having a disability is isolating and lonely, especially in academia. I have few opportunities to engage with other disabled folks, and the able-bodied folks I do engage with rarely understand why I feel isolated. My experiences as a disabled person are often explained away, met with indifference, or otherwise ignored by the greater able-bodied population that I interact with on a day-to-day basis. I have nowhere to go and meet with other disabled students, no way to unpack and unload the things that I find isolating about being a disabled person on a campus that lacks access in multiple ways.
Unlike Evan, I have a pretty good idea about who is–and who isn’t–”waving back at me”. Thus, at least locally, and immediately speaking, I do not belong to a greater disability community: getting accommodation services isn’t the same thing as having a community to belong to. (Which for some reason, is an issue that many higher education and medical stakeholders just don’t seem to get.) But if I go back to that quote from RGT’s article, I see that I am part of a greater disability community: it’s just (mostly) online.
Social media has been invaluable to me in that regard–Twitter especially, but also sites like Facebook and other blogs and forums for disabled scholars, leaders, and other people. In connecting through social media, we are breaking–if for a moment–many of the other social barriers that exist in our lives as a result of being disabled.
So much has been written in the past ten years about technology bringing about a culture in which we lack connection, but I feel the opposite is true, especially when it comes to my experiences with the online disability community. My IRL experiences with other disabled folk are few outside of a hospital setting, so even the simple act of being able to follow other disabled people on Twitter is an act of connection that is wildly empowering. Thus, I follow a lot of disabled individuals on social media because it makes me feel like other people are not only “waving back at me,” but also breaking through the glass that separates us to unpack and unload the issues that the community is grappling with via hashtags, DMs, Facebook posts, and other avenues.
Such participation on social media has led me to discover many wonderful people, all whom have wonderful, powerful, and revolutionary ideas. If you aren’t familiar with the #CriptheVote campaign—started by prominent disability activists Gregg Beratan, Alice Wong, and Andrew Pulrang—you should check it out; this non-partisan Twitter campaign seeks to encourage dialogue amongst disabled and able-bodied people alike (such as our presidential candidates) on policy directly related to the issues that disabled people face in their daily lives. The campaign has put a spotlight on disability rights issues in this election that has not been seen before, which is maybe why I hadn’t thought of myself as a disabled voter until now. The ideas presented through #CriptheVote have made me think harder about my status as a person with a disability and how I would like the political process to recognize that status.
#CriptheVote—and other movements like it, such as the DisVisibility project—are an example of what the influential developmental psychologist Urie Brofenbrenner might deem the community interacting with the macro and/or chronosystems that influence our understanding of disability and its related issues. But on a more personal level, my “microsystem”, to once again use Brofenbrenner’s language, has been happily infiltrated by some of the people I mentioned above and some other folks I have yet to mention. I met, in person, Gregg Beratan at a conference this summer. And earlier this year, I was delighted to receive a DM on Twitter from Emily Ladau, a disability activist that I follow on Twitter because of her great blog “Words I Wheel By,” and the amazing pieces she writes for the Huffington Post and Salon, among other outlets; it turns out my earlier work for Model View Culture resonated with her, which for me was like the equivalent of Lin-Manuel Miranda liking a tweet of mine (which he did once, coincidentally).
Since then, I have learned that I can reach out to these people when I need to: I did just that when the movie Me Before You premiered, as friends, colleagues, and the mass media at large rebuked or downplayed my objections (and others’) to the film, which ultimately argues that a disabled life is not worth living. Instead of having my feelings validated, I was surrounded by the idea that the movie was a narrative worth paying money for, unharmful to me or my community. Yet in reaching out online, I found a community not afraid to talk to one another about the issues that impact us, and willing to acknowledge, support, discuss and debate time and again.
I should reiterate, however, that the disability community does not solely exist online. I’ve seen the community up close at the 2015 Society for Disability Studies Conference in Atlanta, where hundreds of scholars and activists gathered to learn from one another during the 25th anniversary of the Americans with Disabilities Act. The “real life” disability community I know also includes a gym in a hospital, and the faces of kids aged three to eleven who loved nothing more than to be surrounded by other kids like them, singing and dancing their way to a successful performance of a mini-musical. It also includes the hallways of a cramped building, owned and operated by Easter Seals, where I received occupational and physical therapy for the first thirteen years of my life. One of my therapists there is directly responsible for my love of musical theater and I would like to take a short moment to say thank you to her for letting me secretly listen to RENT while I was doing stretching exercises.
While all of this is true, technology often gives us the opportunity to engage with each other when our times, spaces, and contexts do not align. This was reiterated by multiple disabled Twitter users when I asked my network: “why is online accessibility important to you?” For some, the importance of online accessibility boils down to just being able to exist in our society today; as @annieelainey noted, “the Internet has become a vital part of daily life; news, jobs, education, goods, etc…[and therefore] should be equally accessible to all!”. Other Twitter users, such as @DayAlMohamed and @alannarwhitney, pointed out that online accessibility is essential for those who need alternatives to common communication methods such as printed text or phones, and that when online information is not accessible, it is detrimental to people who need the Internet as a space where they can live, learn, and grow. In the words of @ChrisDisability: “Just because you have a disability doesn’t mean you shouldn’t be able to participate”.
Therefore, the privilege of being able to participate in these important conversations is not lost on me. It’s important to remember that disability is diverse, even within those who are disabled. There are millions of disabled people who don’t have access to the technology or resources that would allow them to also take part in the online community that I have found to be so helpful in cultivating my identity as a proud, disabled person. The Pew Research Center reported in 2011 that “Fifty-four percent of adults living with a disability use the internet, compared with 81% of adults who report none of the disabilities listed in the [national] survey [conducted in September 2010].” The Center also notes that disabled folks are “more likely than other adults to live in lower-income households” and “to have low levels of education” than their able-bodied peers.
These barriers–and others such as website accessibility, or even the availability of a computer–still exist for many disabled individuals, especially in the Global South. However, more people than ever before–one group being disabled people–are mobilizing around the issues that are important to them in both online and physical spaces. One week, it may be the portrayal of disability in a feature film, but the next week may bring about a more sobering conversation on the intersection of race, disability, and police brutality. We live in a special time where technology gives us the opportunity to form coalitions of ingroup and outgroup individuals that fight for equity and inclusion. The conversations, and connections, that we have online are real and matter.
It’s a small thing, but an important one–the fact that I am able to do this work across time and distance, and for it to be welcomed by others. Of course, sometimes, the work isn’t welcomed by others and that’s ok: that’s a part of the educational process. But knowing that I have a community of my own, a community of diverse individuals–disabled, Black, LGBTQIA, Asian, women, etc.–behind me is not only empowering and self-esteem boosting, but fills me with pride for who I am: and as Twitter user @Rtmiss says, “…staying connected with friends is a vital part of keeping my mental health in balance.” My pride as a part of the disability community encourages me to be emboldened in my role as an educator, where I take every chance I have to discuss issues of disability with students, staff, and faculty.
My lived experience as a disabled, bisexual, Jewish man hasn’t always given me those feelings of pride and purpose. But through social media, I am able to educate peers, colleagues, and family members on disability rights issues and also connect with other disabled individuals. As someone who yearns to be an educator at the collegiate level and considers himself to be a life-long learner of everything except math (because math is HARD), I can’t help but to quote from the hit-musical Hamilton and say “Look around, look around, at how lucky we are to be alive right now”, for I live in an age where I can participate in educational discourse without being in “the (actual) room where it happens”.
At Warner Bros. Studio in London, where they filmed the Harry Potter movies.
I am living out a wild fantasy in the photo above: I’m standing on a piece of the Harry Potter film set during a vacation from my time as an American undergraduate student. And not just any piece, but the bridge from the castle to the outer Hogwarts grounds, where many important conversations and moments in the *film* series take place (!).
Now, if you look closely at the picture, you’ll see my left hand curled inside my coat. You won’t be able to tell that my left ear doesn’t function. What you cannot see are the years of therapy, thousands of dollars, and countless hours spent at and in hospitals, or the psychological toll of my disabilities.
I imagine what it must be like to meet me in person. You see my left hand/arm hanging close to my side, and maybe you notice that I walk with a limp, as my left leg is also affected by Cerebral Palsy. And maybe if you strike up a conversation with me in a crowded place, you will realize that I’ll need information repeated, or that I’ll need you to sit to the right of me so that I can speak with you properly.
No one knows how to approach it, especially since I do not use a wheelchair, hearing aid, or any other signifier that communicates my Otherness. But as I have evolved throughout my collegiate experience, I’ve realized just how much my disabled body has shaped that experience: specifically, I’ve observed just how others see, think about, and react to me being in space, which has led me to the sad realization that my body will always be a barrier. It is a barrier for colleagues, for friends, for students and professors — populations who often seek to remedy disability by way of technology, rather than personal inquiry or relationship building.
When I was in high school, I mostly thought about accessibility in terms of the technology made available to me so that I could keep pace with my peers. I had an AlphaSmart in elementary and middle school because we discovered that typing was easier for me than writing — but that isn’t to say that I couldn’t write. Yet, that didn’t stop a new case manager in high school from insisting that I needed a one-handed keyboard, pulling me out of class many times to test the thing; after my case manager realized that I could type just fine — with both hands — she let the issue drop, albeit with a look of surprise and skepticism on her face.
Flash forward a few years, and I am in the Disability Student Services Center of my alma mater, preparing to enter college with a fraction of the services created to meet the accessibility needs I had in place throughout my K-12 education. “Why do you need extra testing time?” was the question, over and over again. “Well,” I replied, “I get fatigued from writing more easily than others…but I don’t use it often. I mainly use it for in-class essays.” My case manager nodded a few times, her lips a thin line, before saying “OK,” with the same look I received from my high school case manager.
During my four years in undergrad, I needed to utilize the extra time once, on an in-class essay for a 200-level English course.
I should be able to use the technology and resources available to me when and if I want to. No one should tell me how to navigate my body. But when I got to college, I was disappointed to find that my belief in college as a time for people to be themselves, and for others to respect and accept that, was misguided. If I had a nickel for every time I have been looked at scathingly for taking the elevator up one floor, I would probably have enough money to make one loan payment. I was once laughed at by a colleague for stating that I wanted a tricycle so I can be independent on my current campus, which offers little to no public transportation. My interactions with fellow students and colleagues have been, and continue to be, littered with ableist thinking, almost comically so:
“Why do I need to use the microphone?”
“We didn’t even think of how you’d get around on campus!”
Taken from my personal Twitter account.
Highly intelligent and socially aware college students made all the statements you read above. Most of them were, or are currently, my friends and/or former colleagues.
What these statements show is that just because someone is educated or has known you for a long period of time, it doesn’t mean they even begin to understand you. Moreover, what these statements demonstrate is not only ignorance, but a critical lack of willingness to understand, to empathize. I don’t want people to “feel sorry” for me, but rather to holistically and analytically consider my position as a PWD: my body doesn’t have to be a barrier. My body—like the bodies and minds of other marginalized groups—could be a bridge like the one from the Harry Potter set, a way to learn about the issues people with disabilities face from someone who is disabled. But there are not attempts to learn our stories, to treat us like people.
For me, what matters most is that someone takes the time to ask about what I need, because quite honestly, I shouldn’t have to tell anyone unless I want to. The ableism that I have faced in the academy has kept me from wanting to tell people about my disabilities in any sort of genuine or deep capacity. This, in turn, has made me constantly evaluate the people I find and surround myself with. I also spend an enormous amount of attention and energy on my environment and the technologies available to me at any given moment to make my body adapt to the mold that the academy built for it. As you can imagine, this cycle takes an emotional and physical toll — depression, anxiety, and general fatigue are all issues that I deal with — but I deal with them just like I do my disabilities: by reminding myself that I alone create my own narrative, even when other people try to do it for me.
Accommodating the Academy
Able-bodied people all have things that they fall short with, skills or tasks that they will never master. But when disabled folk say, “These are the things I need in order to do my very best,” it is labeled as an “accommodation” rather than as an “accessibility need”. The language itself is ableist in nature, bringing into focus the reality of how disabled bodies are seen as barriers to able-bodied life.
When has technology created for people with disabilities not been of help to the able-bodied population? We have self-opening doors, elevators, escalators, moving walkways, talk-to-text tech (including, but not limited to, dictation software) — the list goes on. Able-bodied people tend to think about these tools as conveniences rather than everyday necessities. Meanwhile, when an escalator stops moving, people are upset — don’t they realize they can still use them as stairs?
It would be untruthful of me to claim that I use technology made specifically for PWDs on a daily basis. At the same time, however, I will never turn down a free ride to class, or the opportunity to utilize the audio notes function on my Microsoft Word program. Technology, in general, helps me live my life. Yes, I need “handicap” doors. Yes, I need ramps made for wheelchairs, even though I do not use one. I need you to use the goddamned microphone — we all hate how we sound using one, so just do it for crying out loud!
Regardless of how much money institutions have, I do not think that we will ever see a day when every building is truly accessible for every type of body. The technology that exists to help my body — and the bodies of others — to function, is increasingly more diverse with every year that passes. While some of this technology is borne out of a true desire to make PWDs lives’ easier, many new inventions merely seek to “fix” disability, to make the Other the Same. However, the overriding thought is that accessible technology allows PWDs not only to have “easier” lives, but more fulfilling ones. And in a country where we pride ourselves on the pursuit of happiness, why do PWDs have to fight so adamantly for their accessibility needs?
Perhaps the most frustrating fight that this population faces is in the academy. Right now, college institutions are not giving students, staff, and faculty the resources to actively learn about these issues. Isn’t college supposed to be the time in a person’s life where they learn about themselves, and the world? Furthermore, if the education system has not taught students about these issues before, then I’d wager that this would be the best , and perhaps, last opportunity to do so before they venture out into the world and start contributing to society. Disability, illness, disease — these are a fundamental part of what it means to be human. With that in mind, college campuses can, and should, do a better job of advocating for their students, staff, and faculty with disabilities.
To be fair, there are colleges and universities that have given their students with disabilities the opportunities and technologies that they need to be successful students and people. In my experience, though, there’s much more work to be done. Giving out accessible technology to students with disabilities is a start. But what about teachers using a captioning service for their lectures? What about having large-print copies of the lectures available to any student that needs them? Or, more generally, why can’t professors let students move around the classroom as they need to?
I understand that some of these concepts are just not cost effective. I understand that they may even seem counter-productive to learning. What the academy needs to understand about accessibility and the question of “access” itself, however, is that access is just as capacious as disability is. One student’s accessibility needs will not match another’s — not exactly. So supporting all students’ accessibility needs will cost money if the right services (and the people to carry out those services) are to be provided.
Even 25 years after the ADA was passed by Congress, the academy refuses to understand that mere compliance with the law does not equal fair or adequate service. I’m talking about housing regulations for students with disabilities in addition to testing and classroom accommodations; I’m talking about the architecture of buildings and the (lacking) presence of walking signals at crosswalks which vocalize the action for people who are blind or hard of hearing. I’d also like to say that there should be more curb cuts so fools like me don’t have their slower, clumsier foot snag the curb whilst walking and fall on their face. The point is that accessibility in the academy should go beyond the classroom, just like learning does.
What accessibility should look like in the academy?
Technology and people working together in order to make everybody — every body — feel at home in a place that isn’t home.
The author’s views/opinions are his own and not affiliated with any institution of higher education.