A Brief Reading List on Disability (and Higher Education)

Greetings, internet! At the end of my previous post, I said that if there was any interest, I’d post an annotated bibliography of things that you could read if you wanted to learn more about disability in higher education. Most of the comments were pro-bibliography (yay!), so I’ve cobbled together a list of articles and books for some background on disability, and then for disability in higher education, in addition to some videos (i.e. TED talks).

Disclaimer: This list is by no means exhaustive. Seriously, I left a lot out. But I’ve found these to be helpful in my own understanding of disability. If you don’t want to buy a book, or if I’ve recommended part of a book or journal, then check to see if the book is at your local library. If not, request it. If that doesn’t work, then sneak into a university library (just be cool and pretend you’re a student/visiting scholar).

Background:

 

  • Kudlick, Catherine J. “Disability History: Why We Need Another ‘Other.’” The American Historical Review 108, no. 3 (June, 2003): 763-793.
    This is one of my favorite go-to articles for why we should study disability. In her review essay, Kudlick argues that the study of disability history (and the field of disability studies in general) “provides scholars with a new analytic tool for exploring power itself” (765), which can complement studies of race and gender. In other words, disability is worth studying because it can shed light on social and power structures in any given location and time (particularly because what counts as a disabling condition varies throughout history). If you want to explore this topic further, then I’d recommend finding a more recent lit review, because this article is from about fifteen years ago. Rosemarie Garland-Thomson has an important article on disability studies, but the most I could find was an excerpt, unless you are a member of a university library. (Note on the link: there’s a PDF of the article if you do a Google search (which is what the link above will take you to), but for some reason I’m having an issue with posting the PDF.)

 

  • Longmore, Paul K. and Lauri Umansky, introduction to The New Disability History: American Perspectives, ed. by Longmore and Umansky, 1-32. New York: New York University Press, 2001.
    This book is a series of essays pertaining to disability in American history, but for those who don’t have time to read everything, just read the introduction. It covers a brief history of disability studies, which, according to Longmore and Umansky, arose “in response to the medical model’s deficiencies in explaining or addressing the social marginalization and economic deprivation of many people with disabilities” (p. 12). The medical model of disability sees disability as a physical or mental issue that resides in an individual’s body and must be cured or dealt with by that individual (which is how many initially perceive disability). By comparison, the social model sees disability as something socially and culturally constructed (meaning that how disability is perceived changes depending on place and time).

 

  • Shakespeare, Tom. “The Social Model of Disability,” in The Disability Studies Reader, 4th ed. by Lennard J. Davis, 214-221. Taylor and Francis, 2013.
    If you click the link to the PDF, the page numbers will be different. Sorry about that. This article explains the history of the social model, and how it began in the UK with the Union of Physically Impaired Against Segregation (UPIAS) in the 1970s. In 1975, UPIAS wrote, “In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society” (p. 267). Impairment and disability, then, are two distinct terms. In other words, impairment is something that affects someone physically or mentally (e.g. blindness, ADHD). It is neutral. Disability, however, is something imposed by a society on account of an impairment (e.g. prevention of those with blindness from applying to teaching jobs). It is subjective. The social model of disability provides a theoretical foundation for disability studies, and, at least for my purposes, disability history.

 

  • Shapiro, Joseph P. No Pity: People with Disabilities Forging a New Civil Rights Movement. New York: Times Books, 1993.
    Joseph Shapiro was a U.S. News and World Report journalist covering the disability rights movement when he published this book (he is currently at NPR). The book discusses the daily discrimination that people with disabilities faced prior to passage of the Americans with Disabilities Act (ADA). Because disability history is so often neglected in public school history classes (or at least, it was for me), it’s important to read about the history of the disability advocates who fought for passage of the ADA, just as we’ve read about the Civil Rights and Women’s Liberation movements in the second half of the twentieth century. Think of the curb cuts on the corners of most sidewalks in America. They didn’t pop up overnight. They exist to accommodate wheelchair users and were a result of the ADA. And it took decades of advocating, protesting, and rolling on Capitol Hill (which still happens today!) to get the ADA passed. This book is often assigned in disability studies classes, so I figured it should be here as well. And for those who continue to be interested in the ADA, a book was recently published on it that I haven’t read yet, but hope to at some point soon.

 

Disability and Higher Education:

  • Hehir, Thomas, Laura A. Schifter, and Wendy S. Harbour. How Did You Get Here?: Students with Disabilities and Their Journeys to Harvard. Cambridge, MA: Harvard Education Press, 2015.
    Hehir, Schifter, and Harbour’s book interviews sixteen students with disabilities about their experiences in K-12 education and getting to college. Jim Ryan, HGSE’s dean, sums up the book nicely in his review: “with the right expectations, accommodations, and support, the potential of students with disabilities is boundless.” Through interviews, students stress how significant their mothers were in their educational careers (because mothers are warriors when it comes to fighting for inclusive education), the importance of having teachers who place high expectations on them, the significance of technology (e.g. audio text), and the obstacles students overcame when teachers or administrators underestimated their capabilities (one student explained how she had to argue with a guidance counselor to get placed into a more advanced class in eighth grade (75)). This is more of a K-12 book, but I’d argue that it demonstrates the particular difficulties faced by students with disabilities (which generally have more to do with institutional ableism than the disabilities themselves) simply to get through K-12 and apply to college.

 

 

 

 

  • Ohajunwa, Chioma, Judith Mckenzie, Anneli Hardy, and Theresa Lorenzo, “Inclusion of Disability Issues in Teaching and Research in Higher Education.” Perspectives in Education 32, no. 3 (2014): 104-117.
    This article argues that the lack of disability inclusion in the curricula at institutions of higher education may perpetuate the stigma of disability and discrimination against people with disabilities. The authors write, “There is a need to create awareness regarding disability issues in curricula so that university graduates can challenge the barriers that exclude disabled people from mainstream activities” (p. 105). After conducting interviews of professors, authors point out that faculty members who include disability in their curricula usually do so because of their own interest in the topic. Other lecturers say that they found it difficult to know where to add disability in the curricula. You can read the article excerpt here. If you’re curious about this subject, then here is a link to one of the more cited review essays on the subject (apologies that I’m linking to another academic journal).

 

  • Perry, David M. “How Academic Jobs Screen Out Disabled People.” Pacific Standard, February 14, 2017. Accessed June 6, 2017. https://psmag.com/news/how-academic-jobs-screen-out-disabled-people
    David Perry is a former medieval history professor who also writes about current disability issues. Ever read a job description that requires that the applicant be able to lift 20 pounds? Jobs in academia say that they don’t discriminate based on disability, but menial requirements like being able to lift a certain amount of weight would suggest otherwise. This article examines only job descriptions from Holy Cross College, but the problem is far more widespread. Perry has spoken with legal counsel at the Equal Opportunity Employment Commission, and they agree: “Human resources directors cannot just pile up physical demands that are not linked to the core requirements of the job.”

 

  • Vance, Mary Lee, Neal E. Lipsitz, and Kaela Parks (eds.). Beyond the Americans with Disabilities Act: Inclusive Policy and Practice for Higher Education. Washington, D.C.: NASPA, Inc., 2014.

    Oslund, Christy M. Disability Services and Disability Studies in Higher Education: History, Contexts, and Social Impacts. New York: Palgrave Macmillan, 2015.
    If you plan to become a disability services administrator (or any higher education administrator), then the former is necessary reading. The first chapter, by former civil rights attorney Paul Grossman, explains how the Americans with Disabilities Act Amendments Act of 2008 (ADAAA) affects accommodations for students with disabilities in higher education. The rest of the book has essays that discuss invisible disabilities, veteran students who may have disabilities, the importance of collaboration between administrators, and everything else an administrator ought to know when it comes to disability. The title of the book, Beyond the Americans with Disabilities Act, suggests that there are two ways to accommodate disability in higher education – compliance and beyond compliance. With compliance, you give students the bare minimum, which may not be equal to what nondisabled students receive. For example, a student who needs course readings in an alternate format may have to wait weeks for the alternate format (because the disability services office outsourced the text conversion job to a third party), while their classmates can do the course readings immediately. When you go above compliance, students with and without disabilities have equitable experiences. A disability services office could create alternate formats within their own office (which is not all that expensive), and the student could have the course readings the same week as that of their nondisabled peers.
    The Oslund book is not as necessary, but it provides some background about disability services in general, and may be of interest for those who would like more of a history of the position.

Background videos for those who prefer video format:

  • Judith Heumann’s “Our Fight for Disability Rights and Why We’re Not Done Yet
    Judith Heumann is a legend when it comes to disability rights. She tells the story of how she wanted to be a teacher, but was denied her license even though she had passed the oral and written exams. Because her polio had caused paralysis of her lower extremities (in other words, because she used a wheelchair), she failed the medical exam. She then sued the Board of Education and won. Her talk places the disability rights movement alongside the civil rights and women’s rights movements, and how people with disabilities wanted to emulate these movements. Heumann also describes a brief history of important disability legislation, and how much farther we have to go. Heumann: “We know discrimination when we see it, and we need to be fighting it together.”

 

  • Stella Young’s “I’m Not Your Inspiration, Thank You Very Much
    Stella Young was a badass in the disability community. She, I believe, first coined the term “inspiration porn,” and she uses the term deliberately. Examples of inspiration porn include slogans such as, “The only disability in life is a bad attitude,” to which Young will inform her audience that no amount of smiling at a flight of stairs will turn it into a ramp. Inspiration porn objectifies people with disabilities for the benefit of the able-bodied. For instance, the able-bodied will see a picture of an amputee swimmer and think, “Oh, I shouldn’t feel so bad about my life. At least I’m not like that. I should quit complaining.” Or they’ll think, “How inspiring!” and will feel momentarily uplifted by this image of supposed perseverance (or as those with disabilities call it, “living our lives”).

 

  • Maysoon Zayid, “I Got 99 Problems…Palsy is Just One
    Maysoon Zayid is the co-founder of the New York Arab-American Comedy Festival, and she’s hilarious. I’d write more about her talk, but I don’t want to ruin her jokes. Just do yourself a favor and watch the video or read the transcript.

Again, this list is by no means exhaustive. I chose to stick with a general background and then higher education just because those are things I’ve looked into (in addition to three of my favorite disability TED talks). Feel free to leave any articles/books you’ve found helpful in the comments, and I hope you have a chance to learn a bit more about disability!

Advertisements

Why I Skipped Harvard’s Commencement

Two posts in the space of about a month? It must be summer vacation.

Remember how I mentioned that graduation happened in my last post? Yeah, well, I skipped Commencement and the diploma ceremony. I told people in my program that it was because I had a friend’s wedding to go to, but in all fairness, I could’ve made it to Commencement and the wedding.

I do have a nasty habit of skipping commencements, but usually with good reason. I skipped my undergraduate graduation because it would’ve required getting up ridiculously early (even for me). I avoided my MPhil graduation because it took place three months after I moved back to Brooklyn, and I didn’t want to fly all the way back to England for a piece of paper when it could be mailed to me instead.

I did attend my undergraduate diploma ceremony, however, because I felt like a member of the Currier community. More specifically, I was and continue to be a proud member of Currier House. Some background: Harvard College has twelve undergraduate dorms, or “houses,” that all freshmen are sorted into randomly. While you’re not required to live in these houses, it’s kind of expected (I think 97% of undergrads live in the houses). Each house has a dining hall, and its own House Committee to organize events that aim to build community among housemates.

I loved the house system. For reals, I sometimes have more house pride than college pride. These were the people I lived with, stormed dorms with, and hunkered down with until unholy hours of the night while writing papers and thesis chapters. I’ve sung with Currierites at the end of each Currioke (Currier House + karaoke) in a big circle of drunken happiness. From day one, when I was sorted into Currier, I felt included.

When I heard all about how the Harvard Graduate School of Education (HGSE) was a place that strived for diversity, equity, and inclusion, I figured that I’d feel right at home.

You can imagine how surprised I was when I found myself excluded from most of the events hosted by members of my Masters program (known as a cohort), and from the HGSE community in general.

Within HGSE, there are a little over ten Ed.M. cohorts for each Masters program. Mine was the Higher Education cohort. Within this cohort, people would suggest that everyone meet at a bar in Somerville, which is an area that neighbors Cambridge and takes two buses for me to get to. I can’t take Uber/Lyft, and taking two buses is not just a hassle, but potentially health-threatening depending on the weather (I’ve gotten hypothermia once and it was not pleasant). Or the cohort would host events that were too late for me to attend (I have to get up really early in the morning). Or individuals within the cohort would host events that were in their inaccessible homes.

I would point out to the people who hosted the events that I couldn’t go. They would seem disappointed that I couldn’t go, and then they would host something in a similar location about a month or two later. One person, knowing that I couldn’t go to her event, hung out with me one-on-one to make up for it. Because large crowds make me uncomfortable, this was a fine alternative for me. But the overall trend of, “Well, I guess I can’t go to anything unless I host it myself” continued for the duration of the program. And I was not planning to host a bunch of events for people who weren’t willing to put in the effort for me.

Before you say, “Well, get over it, they shouldn’t have to reorganize their lives just because you can’t get somewhere,” I’d like to point out that while I was a student at Cambridge (bumpy, cobblestone-filled Cambridge), the medievalists changed their usual pub location so that I could go there with them after workshops. I didn’t have to ask twice. They changed their route to the pub to one that was more wheelchair-friendly. I told one student about my wheelchair concerns, he then told the rest of the medievalists, and a change was made.

That wasn’t the case at HGSE, which stung mostly because HGSE prides itself on inclusion. People at HGSE wanted to learn about how to be more inclusive, and how to make higher education more equitable. But ignoring me when I say, “Hey, I’d love to go, but literally cannot go there,” is not inclusion. This is me having the choice between being the wet blanket who signals the ADA alarm when something is inaccessible, or not saying anything at all to avoid “wet blanket” status.

My cohort didn’t intend to exclude me. Some reached out, and I’d voice a concern, but these conversations either ended in me saying that I would host the event in my building, or, “No, it’s fine, you go have fun.” I will say many things to avoid “wet blanket” status.

I don’t want you to think that my cohort ruined my HGSE experience (although one person asked me over coffee, “So when are you going to walk again?” which I thought was hella rude, and, as one friend put it, “damn stupid for a Harvard student”). Outside of the event-planning realm, they’re really lovely people. I can’t blame them for not always thinking about accessibility. HGSE as an institution did not emphasize disability as something relevant to people without disabilities. I’ve also noticed that it’s hard to keep disability in mind when you’re not actually disabled. I didn’t, however, skip Commencement just because I had issues with my cohort. That would be silly, especially because there are some people in the cohort I hope to keep in touch with.

Looking back on my program, I had issues with HGSE. Really, if HGSE has taught me anything, it’s that thousands of academics and administrators in the realm of higher education are working to improve diversity at colleges and universities. Upon closer examination, “diversity” does not include disability. Before you tell me that I’m being ridiculous, and of course disability is diversity, consider that I took coursework on diversity in higher education, the history of higher education, and the like – disability was not discussed or even acknowledged. Consider that students with disabilities face numerous hurdles once they’re at college, and some consider it a “‘luxury’ when professors and staff actually work with them.” Consider that those who work in diversity and recruitment are never, to my knowledge, encouraged to recruit someone with a disability. (There are articles about recruiting graduates with disabilities in the workforce, but nothing about recruiting students for higher education.)

My advisor and my boss were two highlights at HGSE, because my advisor, the inimitable Tom Hehir, taught a course on inclusive education. Everyone in that class was interested in special education to begin with and already had an understanding of disability that can be summed up as, “You get it.” Unfortunately, the class was geared towards K-12 (because my advisor is an expert in that field). To compensate for the fact that HGSE offers zero coursework in disability in higher education, I interned at their Access and Disability Services office. My boss taught me about Section 504 and the ADA, and how each pertains to higher education. When it came to disability in higher ed, however, I had to give talks and mini-lectures as if I was the expert. And I knew that if I didn’t talk about this issue, then no HGSE professor, besides Tom Hehir, would.

I was surprised that I somehow landed in this position, because I literally wrote on my application to HGSE that I wanted to study disability in higher education. I assumed that, because they accepted me, there was coursework available that I could take to further my knowledge of this topic. Otherwise, I could have stayed home, read Professor Hehir’s books, asked my boss (who I knew as an undergraduate) what she recommended as background for higher education disability services, and interned at the disability services office at a local college. Why did I spend thousands of dollars on tuition? To lecture the able-bodied?

Apart from my internship and my lone class on K-12 inclusive education, I had to study disability on my own, as if it’s a niche topic. With such an emphasis placed on intersectionality these days, you’d think that disability would have larger representation in curricula at HGSE. After all, we’re all temporarily able-bodied, and disability doesn’t care about your race, gender, sexuality, or socioeconomic status (also, fun fact, people with disabilities are the largest minority in the USA and the world). So why hasn’t HGSE hired a professor who specializes in disability in the realm of higher education?

I tried to get involved with student advocacy. I became an Equity and Inclusion Fellow at HGSE, and was hopeful when they accepted my application. Maybe disability is something they care about! My hope transformed to cynicism during our orientation meeting, where we sat through a lecture on race, and then were told that while there were many diversity issues to tackle, we would not get to all of them. In my mind, this was code for: “We’re not going to cover disability.” As if to confirm my concerns, events planned for the following semester covered race, religion, and gender. I stopped going to meetings. One of the Fellows told me, “But if you leave, they win.” They win? Who exactly is “they”? The able-bodied? Why does equity have to be a competition? (Side note: It’s not just disability – there was just one HGSE event of note that focused on issues faced by the Asian American community.)

And, finally, when my NYT article came out in which I explained how much effort I had to put into my daily routines just to attend college, people at HGSE complimented me for my efforts. No one seemed to mind that obstacles for me were everywhere, so long as I could continue to navigate them. I guess someone could suggest that I take a reduced course load (i.e. be a part-time student registered as a full-time student). Then I’d have enough time for physical therapy and coursework.

It’s possible, sure, but if I was on federal financial aid and did that, then I would receive less aid. According to the University of Connecticut’s disability services page (they have a pretty stellar disability services office), “federal regulations require that Federal Pell Grant funds be prorated based on the number of credits taken, and that the student financial aid budget is reduced accordingly.” Those under the Federal Stafford Loan program must be enrolled for a minimum number of credits, depending on the university.

In other words, if I were on a Pell Grant, then I’d have little incentive to reduce my course load. In a sense, students with disabilities, particularly those that need federal assistance and physical therapy, may have to decide between their degree and their health. Or they can do what I did and be in a constant state of beast mode, but I don’t recommend it (unless you’re seriously in love with your schoolwork). Was this discussed at HGSE? Nope.

One of my missions at HGSE became raising disability awareness. By the time Commencement rolled around, I felt as though I had convinced no one (or at best, a handful of people) of anything relevant to the disability community, despite talks and publications and things that I foolishly thought could change minds. I filled out course evaluations where I pointed out the lack of disability-related materials in most of my classes. In a couple of cases, professors asked me what I’d recommend for future syllabi, which I appreciated. In a school-wide survey, I mentioned the lack of disability issues covered at HGSE. I met with the dean of HGSE to discuss how to include disability topics at HGSE in the future. I won’t know if anything I’ve said will make an impact at HGSE, unless someone there gives me an update in a year or two. Similarly, my classmates claim they’ve learned from me. I believe a few of them, but I won’t know for sure about the rest of them until they begin their post-HGSE careers and actively include disability when they work on issues of diversity, equity, and inclusion.

If I had attended an institution that I knew didn’t care about diversity, then I’d have understood the exclusion of disability topics. But this is HGSE, a place that prides itself on progressive thought and every buzzword synonymous with diversity. It’s a place so liberal that the day after the presidential election, people acted like they were at a funeral. Disability was all over the DNC Convention, and #cripthevote was a thing that trended. Enough was going on the disability community that people who weren’t familiar with disability rights could’ve done their own research.

By the end of the school year, I was fed up with my institution and the numerous well-meaning able-bodied students throughout the entirety of HGSE who said they cared about disability issues, but not enough to attend programming about disability, ask questions about disability (in courses not taught by Tom Hehir), or heck, even ask me if I could recommend anything for them to read. How could I graduate alongside this community of people that alienated me to the point where I cross-registered for Harvard College classes in medieval history, just so I could feel more at home?

I’ll still pick up my diploma in a few weeks when I’m back in Cambridge. After all, I already paid for it.

(By the way, if you’d like a reading list on disability, I’d be happy to post an annotated bibliography in the future.)

Disability in Higher Education

Harvard University’s commencement is tomorrow, and the full-time (and some part-time!) members of the Harvard Graduate School of Education’s (HGSE) Higher Education Ed.M. cohort will graduate. Hooray! I shall add a new degree to my lair (or apartment, but who doesn’t want to sound like a super villain every now and then?).

This past semester has been bonkers. In a complete reversal of the last time I applied for a PhD in History, I got accepted to multiple PhD programs. I visited Columbia and Princeton (Columbia, I take everything back, you’ve upped your accessibility game and I will dedicate a future blog post to your improvements), and went with Princeton. Princeton is renovating a dormitory for me and is installing a wheelchair lift in the history building so that I can get to every floor (there are other reasons I chose Princeton, but I just thought I’d point out what accessibility accommodations they’re doing). Time will tell if the lift is effective, but I trust that the Princetonians know what they’re doing. I plan to study marginalization and social/legal history in the early middle ages, and am really excited to start in the fall.

Since my last post, my NYT essay has been featured on Sheryl Sandberg’s OptionB.org site under the “Build Your Resilience” tab (scroll down to the “Inspiration” section). While I’ve always found the label “inspiration” problematic (because people who use it tend to set the bar ridiculously low for people with disabilities), I am honored to have my essay on a site that wants to inspire people to become more resilient. I’ve also been featured on the HGSE website, have spoken on the social model of disability in higher education, and have had my Establishment essay on applying to school as a wheelchair user republished on Inside Higher Ed. And these are multiple excuses to say that I’ve been rather busy and have neglected my blog as a result.

But summer is just beginning, which should leave me some time to blog and ramble as I procrastinate preparing for language exams. Today, I’m going to talk about something that should’ve been discussed in September. Yes, that’s right, that is how long overdue my post is.

I went to HGSE to study disability in higher education. More specifically, I wanted to study access to higher education for students with disabilities. I also wanted to promote disability as part of the diversity conversation. Shortly after I matriculated, The Chronicle of Higher Education (one of the main news sites for the goings-on of higher education, which is read by administrators and professors alike) published an issue that focused solely on disability in academe. At first, I thought, “Yay! Disability as a legit diversity issue!” Then I read the articles.

Egad.

The articles are only accessible if you have a subscription, so I’ll post the headlines and the summaries of three of them from the site (and the links, in case you have a subscription):

If this is the state of disability in higher education, then we have a problem.

First off, “accommodation to inclusivity” sounds like a great idea, but this article essentially lauds the University of Virginia for making its campus more physically accessible. This is fabulous for students with mobility impairments, however students like me, who use wheelchairs, comprise 3% of 11% of students with disabilities. It’s important (well, it’s a legal requirement) to have a campus that students with mobility impairments can navigate realistically, however when one throws the word “inclusivity” around in the context of disability, the campus (and all of its services) had better be inclusive of all students with disabilities (i.e., please include the other 97%). Otherwise, you’re using a buzzword, which is annoying and helps no one.

But The Chronicle does have some discussion of invisible disabilities. They mention Landmark College, a private institution in Vermont that offers two-year and four-year degrees, several times in their disability issue. Landmark has a summer program that enables students with learning disabilities to learn strategies (e.g. time management, note-taking tools) before matriculating to other institutions. Their summer program is $7,500, but financial aid is available.

Landmark College appeared in at least three articles in this particular issue whenever learning disabilities came up. Some students attended the summer program, or enrolled for a year or two and then transferred to another four-year institution. It’s great that this institution exists, and it seems to help a lot of students with learning disabilities.

But this cannot be the solution for all students with learning disabilities. For starters, what happens to students with learning disabilities who don’t get financial aid? Do they just not learn strategies to succeed in higher education? Furthermore, if all students with learning disabilities were sent to Landmark, the school would become overcrowded quickly. This institution seems like a copout, and colleges and universities may see Landmark as a place to send its students with learning disabilities, rather than as an example of how they can improve their own disability services offerings to students.

At the moment, students with learning disabilities aren’t receiving the supports they need at most institutions. As of 2014, only 27% of students with learning disabilities completed a college degree within six years (compared with the national average of 59%). There are ways that disability services (DS) offices at most colleges and universities can enable students with disabilities to learn strategies to help them succeed (for instance, HGSE offers coaching). It should not be expected for students with learning disabilities to just go to Landmark, especially if it means that a student would have to pay more (assuming that not all students get financial aid).

And I’m sure there are people out there who think that students with disabilities should have to pay more, and should go to a program like the one at Landmark in order to “fix” their disability. Except that some universities already employ advising and other strategies to retain minority students. Places like Stanford and UC Berkeley have been focused on the retention of Latinx students and have been successful. Why can’t the same effort go into the retention of students with disabilities? If colleges and universities learn about the strategies taught by Landmark and then hire more DS staff at their own institutions (who can coach students with disabilities to learn these strategies), then it’s likely that the retention rate of students with disabilities (and, subsequently, the overall retention rate) will improve. And if universities only provide supports for certain minority groups and exclude others, then they send a message that they only care about certain groups of students.

And finally, the article that ticked off every disability services coordinator who cares about their profession: Ari Trachtenberg’s “Suitable Accommodation or Legal Cheating” op-ed. Trachtenberg is a professor at Boston University who wrote, “It is inappropriate to give an objective test with a clearly delineated grading policy if some students get uncalibrated bonuses.”

Two things:

1. “Uncalibrated bonuses”? Who is he to decide what constitutes an uncalibrated bonus? Trachtenberg is an engineering professor (so, not that kind of doctor), and has no experience with disability services. He represents the sort of person who thinks that people with disabilities are trying to game the system. Getting an accommodation approved requires different standards at each institution, but a DS coordinator reviews all medical information (which the professor is not privy to) before granting accommodations. It is important to understand (if any professors/future professors are reading this) that a disability services office grants what they feel to be the most suitable accommodation. If a professor wants a better explanation for the accommodation that they are asked to grant, then they should take it up with disability services, and not whine about it to The Chronicle of Higher Education.

2. The fact that this article got published means that Trachtenberg is not alone. There are likely many professors who feel this way. And this is terrible for students with disabilities throughout the country, because it makes them hesitant to disclose a disability and request an accommodation. I mean, why ask for an accommodation if there’s a chance that your professor will think that you’re cheating? Out of 94% of students who received accommodations in high school, only 17% requested those accommodations in college. I’m speculating a bit here, but stigma may have something to do with that percentage drop, because college is where students have to start advocating for themselves (a topic that The Chronicle has covered before).

The cherry on top for all of this is that The Chronicle’s disability issue has an interactive article on diversity that doesn’t even mention disability. Seriously, who edited this issue?

To be fair, there were a couple of interesting articles in this issue, including a video on DeafSpace at Gallaudet University, and an article on universal design. The Chronicle has also published pretty good articles on disability in the past (see this article on Purdue University). But this particular Chronicle issue as a whole has convinced me that higher education still has a long way to go when it comes to including students with disabilities in the diversity conversation. I might be going back to medieval history in the fall, but I’m going to keep writing about students with disabilities in higher education. Because more are attending institutions of higher education than before, and they deserve access to a college experience comparable to that of their nondisabled peers.

What I Wish My Doctor Said Instead

[This post was originally posted in the wrong location – sorry about that!]

Greetings, internet! As a friend recently pointed out to me, it’s been a while since my last post. In my defense, I started a Masters degree in Education, submitted PhD applications for History programs (that’s right – a semester of Education school has confirmed that I’m a medievalist at heart), started an internship at my Ed school’s Access and Disability Services office, wrote a story about burrata, wrote an article on the accessibility of voting booths (yes, it is a modified blog post), wrote a story that got published in the New York Times Disability series (holy moly), and am helping my sister plan her wedding (yay!).

That said, I’m going to be better about blogging this year. Because it’s been about four months since my last post, and that is far too long.

My NYTimes story was published online this past Wednesday, which was, weirdly enough, a day before my nine-year injuriversary (i.e. injury anniversary, but mashed together to make it sound cuter than it is). Nine years ago, I was wearing a neck brace, incapable of writing with my right hand (or using it, in general), and hooked up to an IV that would dispense morphine through my system at the push of a button.

I was also very confused. A major neural highway in my body had just been damaged, and my body had no idea what was going on. At this time, I figured the doctor could explain what was going on, or offer some assurance that things would get better. Anyone who ends up in the hospital wants to hear good news, or at least some kind of silver lining. Sure, friends and family can provide an incomparable support network, but it really helps to hear something concrete and positive from a medical professional.

I wish I could say that the doctor at my first rehabilitation hospital in NYC offered concrete encouragement and support, but such was not the case. I was a minor at the time, which meant that the doctor gave her prognosis to my parents instead of me. Here’s the gist of what she told them:

  • Your daughter will require frequent hospitalizations for the rest of her life due to complications from her injury (e.g. pressure sores, blood clots).
  • Your daughter’s condition will not improve beyond the first six months.
  • Your daughter will have a lower quality of life due to her injury.
  • Your daughter will have half the lifespan she would have had prior to her injury.

Essentially, a shortened and weakened life. No wonder the “better dead than disabled” narrative is so popular. My doctor expected my parents to break this news to me immediately, but several years passed before my parents told me any of this (and in case you were wondering, yes, I’m glad they kept me blissfully ignorant of the doctor’s news). At the time, all I remember is that my mother wanted to transfer hospitals. But it was close to my home and high school, and teachers would visit me to give me assignments for classes (I was still taking AP History, AP English, and Precalculus). My Precalculus teacher even stopped by every week to teach me the curriculum. And so I did not transfer facilities until five months later.

To be fair, the nursing staff at this hospital was beyond fantastic, and I still keep in touch with some of the physical and occupational therapists on Facebook, but the doctor who spoke only of gloom and doom made me want to set buildings on fire (unoccupied buildings of course, because I would never want my hypothetical acts of arson to hurt someone). When I participated in a storytelling event at my Ed school in November, I mentioned a doctor who discouraged me from applying to college. This is that doctor. She didn’t wait for my parents to tell me about her thoughts on college, and so she told me to my face, and then told me to travel instead.

Looking back, it’s easy to say that this doctor was out of line or hurtful. But there was some truth to her prognosis. If I had done nothing to stay healthy, then yes, I would have required frequent hospitalizations. But her words can create a self-fulfilling prophecy. If my parents had listened to her and had not tried to enroll me in physical therapy programs, or purchased equipment such as a Functional Electrical Stimulation cycle or standing frame, then of course I would not have improved beyond six months. Improvement takes a tremendous amount of effort.

But the doctor didn’t say that improvement takes effort. She didn’t say that certain pieces of equipment could keep me healthy and keep me out of the hospital. Perhaps she didn’t know the most recent literature on spinal cord injuries (which makes sense considering she was the head of a pediatric unit and not an SCI specialist), and didn’t know that people with SCIs can regain nerve function well past two years.

My issue with what she told my parents isn’t that she was unfamiliar with SCI literature. It’s that she took the worst-case scenario for my injury and described it to my parents as if it were inevitable.

I talked to a friend of mine who is currently in medical school about this, and whether med students are given better guidance on bedside manner than was given to this particular doctor. After all, that doctor was at a retirement-friendly age. But my friend did not have a terribly optimistic answer. That most likely means there are doctors across the country giving people with recently disrupted nervous systems the same bleak prognosis I received, with little to no silver lining.

And so, for you current and future med students/doctors, let me modify what my doctor told my parents to make it more palatable. Should you ever come across someone who has recently sustained a spinal cord injury, perhaps these can be of some help:

  • Your daughter will require frequent hospitalizations for the rest of her life due to complications from her injury (e.g. pressure sores, blood clots), but only if she doesn’t take care of herself.
  • Your daughter’s condition will not improve beyond the first six months, but a physical therapy program could help. I know of some programs that can keep her in shape.
  • Your daughter may have a lower quality of life due to her injury because there is still, unfortunately, a stigma associated with disability. But she might be able to meet people in college if you tell her to be less self-conscious about the wheelchair when talking to classmates. Also, there are adaptive sports that she might enjoy playing.
  • Your daughter will have half the lifespan she would have had prior to her injury if she doesn’t take care of herself. She has more health risks than a typical teenager, and so she needs to be particularly mindful of what she eats and how often she exercises.

It’s still a rough prognosis, but there’s far less gloom and doom. And in all honesty, I wish my doctor had said something like this to my parents because it is significantly more accurate. Not to get all preachy, but the worst-case scenario happens when you do nothing, and when you think that there’s nothing you can do. And in the case of a spinal cord injury, you may be able to qualify for studies that have an exercise component to them (such as the Reeve Foundation’s NeuroRecovery Network). Yes, there are waiting lists for these programs, but that’s no excuse for not telling a patient about them. There’s also Project Walk, and if you’re in the NY/NJ area, my gym, Push to Walk, which provides financial aid to help defray the cost for those who wouldn’t be able to afford workouts there otherwise.

I understand where my doctor was coming from when she said that my quality of life would be lower than it would be if I didn’t have a disability. People with disabilities have a higher unemployment rate than those without disabilities, and they face stigma and stereotypes. And the first two years after my injury were rough. But then I picked up hobbies (e.g. learned guitar), socialized more (those guitar lessons actually came in handy), and found communities of people of various abilities who thought I made for fun company. I am pretty disappointed that my doctor never once mentioned adaptive sports, though, especially since she knew I was on the track team in high school.

Please understand that I am not trying to paint a rosier picture of life with an SCI, and I am not saying that my doctor should have played down the realities of SCI. It’s difficult. It requires resources that unfortunately not all with SCIs have. And I know that I speak from a place of privilege because I bought my own physical therapy equipment (with money raised from my high school fundraiser and my parents’ insurance) and can spare the time to go to an SCI gym in New Jersey when I’m not at school. I have a support network that has made the past nine years productive and worthwhile. But regardless of my background, my doctor should have told my parents the worst-case scenario, and then told them how it could be avoided.

And so I’m asking current and future doctors who have patients who have recently sustained a spinal cord injury (if any of you read this), please tell them what the worst-case scenario is and how it doesn’t have to end up that way. Tell them about communities of people with disabilities who form positive relationships with each other and with the able-bodied. Tell them that, if they’re in high school, that they can go to college (but they will have to contact that college’s disability services office in advance to make sure it’ll be a smooth college experience). Tell them that they can stay healthy by joining adaptive sports teams, going to SCI gyms like Push to Walk, and going to NeuroRecovery centers. Encourage them to start fundraising, because life with an SCI gets expensive. But most of all, tell them that they do have some control over how their life with an SCI plays out.

Adaptive Climbing Fail

I was going to put off this post for about a week, because my school’s orientation is tomorrow and I wanted to get a baking project in before then. But instead, I am spending my night writing about adaptive sports gone wrong.

After two delightful sled hockey outings, I thought I’d try another sport out. I have a friend who loves rock climbing, and a friend who uses a wheelchair who recommended adaptive rock climbing, so I figured two endorsements were plenty enough for me.

I took a bus to Porter Square and waited for a second bus to take me to a stop that was pretty close to the Somerville branch of Brooklyn Boulders. I checked my phone for the Sunday bus schedule, and found to my dismay that I had missed the bus by ten minutes, and another would not arrive for forty minutes (fifty minutes between buses? Seriously, Cambridge?). I called my friend, who I was meeting at Boulders, and asked her if she had any thoughts on the hilliness between where I was and Boulders. Soon after, I started to wheel myself the 0.8 of a mile (according to Google) to Boulders.

After I arrived, I rented climbing shoes, a harness, and a chalk bag (chalk is used for grip reasons, like how gymnasts use it before getting on the uneven bars/high bar). I wheeled out to this very large space with high walls.

Boulders Interior

One of the climbing instructors, Susan, came over and showed me how to put on the harness, which required some awkward hopping up and down on my part (which, to be fair, are the same hopping motions I use when pulling my pants up, although I usually don’t pull them up in a room full of people).

Susan showed me how to tie a rope so that I could start climbing. I put my hands on the plastic rocks (or maybe they’re made of a different material, but I couldn’t tell) and couldn’t get very far off the ground. Once I lifted up from my chair, both of my legs started to spasm and pull me down to the ground. So that was helpful.

We changed walls to find something simpler. Susan was cheerful and helpful throughout the session, although she mentioned to me later that she usually works with (presumably able-bodied) children. She also mentioned that there were other members of an adaptive climbing group who mostly relied on upper body strength (yeah, I couldn’t even do a pull-up in high school, so that seems like an unfair expectation), or who had their own implements to make rock climbing more doable. Judging from how she described one such individual, it sounded as though he invented his climb-assist device. Do I have to invent something?

I’m not entirely sure what was supposed to happen at adaptive rock climbing. I thought adaptive sports meant that a sport was adapted to become playable for someone with a disability, and it could be further adapted depending on the ability level of a particular individual. In sled hockey, the blades under the sled could be widened or made more narrow depending on a person’s skill level, or the back of the sled could be made higher if someone had issues with core stability.

Susan mentioned that there was another harness that might work better for me, but she wasn’t sure how to set it up. I understood and don’t hold it against her at all, but when I registered for the event three weeks ago, I wrote, “I am technically a quadriplegic, but I have strong arms and a strong core. My left hand has a normal grip, but my right hand has a bit of atrophy (which is why I describe myself as technically a quadriplegic, because I otherwise seem paraplegic).”

I guess it isn’t clear from my self-description that I’d need a different harness from the one given to able-bodied individuals, but I’m surprised that there wasn’t that spare harness on hand, and that no one had been trained to use it even though I gave three weeks notice that I was coming. Perhaps my expectations were too high.

I have to add, because there is no ignoring this, that one of the adaptive climbing instructors (whose name I did not get, and who, thankfully, was not the person I was primarily working with) managed to make me feel terrible about myself.

Me: “Yeah, it’s hard, my legs spasm and then they make it difficult to go any higher.”
Instructor: “Can you control them?”
Me: “No, they have a mind of their own.”
Instructor: “If you could try to control them, you could get them to help you.”
Me: “I can’t control them.”
Instructor: “If you try –,”
Me: “That’s not how they –”
Instructor: “But wouldn’t it be great if you –,”
Me: “They really don’t work that way.”
Instructor: “It’d be so much easier.”
Me: “Yes, it would.”

Lots of things would be easier if I could use my legs to help me. But that’s not my reality right now. And that’s why I’m looking at adaptive sports in the first place.

She then said something that implied that if I kept rock climbing, maybe I’d be able to control the spasms to help me someday. I am fully aware of Activity-Based therapies and their benefits (because I’ve been doing them for years), but I do not think that was what she was alluding to. I also don’t think a weekly rock climbing clinic would bypass current scientific developments and magically heal my nerves, nor that this particular instructor was an expert on neuroscience.

The way she spoke so simplistically about my impairment, and the way she made it sound like the way to improve my rock climbing was to get my legs to work (oh gee, I hadn’t thought about that before), first, made me feel like she shouldn’t be an adaptive climbing instructor (seriously, do they get any sensitivity training?); second, made me think that adaptive rock climbing is only for a particular type of disabled individual; and third, made me feel like my physical improvements over the past year meant nothing in the grand scheme of things (which is nonsense, of course, because I’m proud as hell of what I’ve accomplished lately).

There are only so many times I can tell someone that my legs don’t work the way I want them to before my voice starts to break and I have to keep my tone as level as possible before the waterworks start. I wanted to tell her about how I tried, for years, to control my leg spasms, and how my efforts were ineffective. I wanted to tell her about how it’s hard for me to know where my legs are in relation to the rest of my body when I’m in an unfamiliar setting (i.e. a rock wall). I wanted to tell her that I was rejected from a research study years ago that focused on neuro-recovery (it’s literally called the Neuro-Recovery Network) because my legs didn’t show “active movement,” and that the experience has become a sore spot for me. I wanted to tell her that the point of adaptive sports is to find an activity that has been modified for someone like me in mind, and not for someone like me with leg function. Why advertise yourself as a place that does adaptive sports for anyone with a disability, but not mention that you’re looking for a particular sort of ability level?

The worst part was that this particular instructor didn’t seem to think that she had said anything offensive. Has she said things like this to other people with disabilities? To be honest, I had not heard anything that poorly-thought-out since high school, where a student said I was “lucky” to be injured because that meant I could use the school’s elevator (a luxury, I suppose, in a school with ten floors, although anyone who complains about ten flights of stairs probably needs a good workout anyway), and several others said I was fortunate to have such a great college essay topic ahead of me (indeed, many thought that my disability was the reason I got into Harvard, but that’s a post for another day). I can understand a teenager saying something without thinking of any greater consequence, but someone who is supposed to be an adaptive instructor should know better.

Brooklyn Boulders, when you say adaptive, but only want a certain type of disabled participant, you should say so on your website. It’s easy: “Come join us, but only if you have active leg movement and/or an upper body strong enough to pull up your whole body.” There. Look how you’ve saved both of us some hassle.

I left and took a bus to Porter Square, where I got Berryline, which is a place with frozen yogurt and homemade mochi. It treats all forms of stress and sadness.

Berryline Comfort Food
Happy food!

When I told Susan about my blog at the beginning of the session, she told me to let her know once I’ve written about Boulders. I would feel bad showing her this after my failure of a session, and about her colleague being completely thoughtless, particularly because Susan was so lovely to work with. But this is my personal blog, and this was how I experienced that day. I can’t apologize for having my feelings hurt by an instructor, but I can hope that Boulders will do some sort of sensitivity training for anyone who becomes an adaptive instructor. I’m calling them this week to let them know what happened. I’ll update this post based on their response.

I think it’s safe to say that I should find another sport elsewhere.

Update (9/1/16): I know that internet comments should usually be avoided, but if you see the comments below, someone from Brooklyn Boulders has identified the person who said that I should try to use my leg spasms as one of the other adaptive climbers, and not as one of the instructors/volunteers, as I wrote above.  While that does not excuse what she said to me (having a disability does not mean you can say insensitive things to other people with disabilities, or to anyone, really), it is comforting to know that my uncomfortable conversation did not occur with a staff member.

Standing with Context

What’s this? Two physical therapy (PT) posts in a row? Has Val run out of non-PT-related stories? Nah, I just wanted to get this particular post in before I leave for Cambridge (the American one) and have to take a brief hiatus from my PT gym. Believe me, I’d love to move my gym to Cambridge or move my school to northern Jersey, but neither one of those options is possible (or so logic tells me). Anyway, before I leave, I wanted to talk about how I do standing exercises at Push to Walk, and provide lots of context to explain what I mean by “standing exercises.”

I remember when Eric LeGrand, a former NCAA football player who became paralyzed following a hit during a game, tweeted a picture of himself in a standing frame. He captioned it, “Standing tall, we can’t fall. Standing upright again,” with zero context to describe what he was doing (which is, standing upright with the support of an entire apparatus, which I had thought was apparent from the photo). The mediaverse jumped on it and declared it inspirational (because when it comes to spinal cord injuries, the media lacks a thesaurus). News outlets turned LeGrand’s tweet into a mass of misleading clickbait headlines that said LeGrand was standing in therapy. He was, technically, but the articles that followed the headlines were poorly informed about what the use of a standing frame actually meant.

The use of a standing frame is, undoubtedly, an accomplishment. When someone first becomes injured, particularly those with high level injuries (LeGrand is a C3-C4 level injury, just one vertebra down from where Christopher Reeve was injured), their ability to maintain their blood pressure becomes a major issue. The act of sitting up can result in dizziness and fainting. It took months for me to sit up without seeing dots in the morning, and I have to constantly fidget or stretch backwards in my own standing frame to keep my blood pressure up (although to be fair, my blood pressure has always been on the low side).

But the LeGrand picture taught me a lesson in social media – don’t post anything on your personal account without a good explanation of what you’re doing (although to be fair, the media probably would’ve taken anything that he posted out of context anyway).

I may have taken this lesson a tad too seriously, because I avoided posting anything related to PT anywhere on my Facebook, Twitter, or Instagram, with the exception of a planking video and last week’s sled hockey post, for the past eight and a half years. I’ve told Push to Walk (which has Facebook and Instagram accounts) that they are not allowed to tag me if I appear in any of their posts. And I’ve kept discussion of my physical therapy to such a minimum that when I told one of my professors that my summer plans included lots of physical therapy, he replied, “Ah, a little R&R?” At the time, I laughed and said, “Yup,” because I didn’t want to say, “Actually, this takes quite a bit of effort, and about a solid 20 hours of my week, but sure, let’s call it R&R.”

It’s not that I dislike talking about PT. Having been a cross-country runner, I enjoy doing and chatting about exercises that are both beneficial and slightly masochistic. But I can’t just upload a picture or a video to Facebook and say, “I did this in my workout today!” I have to explain what I’m doing. Otherwise, my friends and family might get the wrong idea.

But now that I have a blog, I can post PT pictures with explanations. If I wanted to, I could even describe what I’m doing in nauseatingly specific detail! But I won’t, because a number of you will probably stop reading. So I’ll just use reasonable-length explanations.

But first, there are numerous health benefits to standing. I say this because usually when the media depicts someone with a disability doing any sort of standing exercise, it’s to say that the person is doing PT with the sole intention of someday rejoining the able-bodied. People with disabilities have goals other than walking again (although it’s a solid long-term objective), and can all improve their health with standing exercises. I personally like being healthy.

That said, here is a picture from a workout from 2010:

Push to Walk 4
Not pictured: my face turning pale as the blood scurried down to the rest of my body.

What it looks like: I’m standing while keeping balance as the trainer steadies my hips and I hold onto a bar.

What I’m actually doing: First off, the trainer is blocking my knees with his knees. He is also holding my hips in place. This prevents me from falling, which is exactly what I would do if he let my knees or hips go. My hands are gripping the bar for balance purposes.

What this picture doesn’t tell you: My hip flexors are really tight from sitting in a wheelchair. The first time I tried to go from a seated position into standing, I nearly headbutted my trainer because I couldn’t stand up straight, even with his assistance. As humorous as it would be to headbutt my trainer, he really did not deserve to be headbutted (what is the past tense of headbutt?) on that particular day. Also, I was upright for about twenty seconds before my blood pressure began to drop, I started to see dots, my surroundings began to look green-ish, and I had to sit back down again.

Here is another picture from that same session:

Push to Walk 5
I held this for maybe ten seconds?

What it looks like: I’m standing with less assistance!

What I’m actually doing: My trainer is still blocking my knees and holding my hips in place, and he told me to take my hands off of the bar so that I could work on my balance.

What this picture doesn’t tell you: This is a balance/core exercise where I happen to be in a standing position (meaning, standing with a heck of a lot of assistance). This did not last long either, because I had to sit down about thirty seconds later (darn blood pressure).

Note how stiff I am. This is because: 1. My blood pressure is dropping and I’m doing my best to not tell my trainer about this until it is absolutely necessary; 2. Tight hip flexors are making it difficult to maintain any semblance of decent posture; and 3. This position feels really hard to maintain and I’m not breathing as much as I should be.

Around that time, my standing sessions were hit or miss. I’d either be able to stay up for 5 minutes, or for 30 seconds. It was inconsistent, and my mom happened to take a picture of me on a good day.

Also, this is a great moment to introduce the quad belly, which is the name for that condition where someone with a C-level (or high T-level) spinal cord injury lacks the ability to suck in their gut. As a result, their belly looks like it’s sticking out. It’s unflattering, less than ideal for my blood pressure, and makes it difficult to go shopping for clothes (more on that in a later post).

Now let’s fast forward to a picture from a recent workout.

PTW Standing 080216
If you’re wondering what my trainer is holding, those are standing handles, or “standles.” Best equipment name ever, or best equipment name ever?

What it looks like I’m doing: Exactly what I’m doing from my 2010 picture (although with a different trainer who also deserves not to get headbutted on this particular day).

What I’m actually doing: Standing while my trainer blocks my knees and holds my hips in place. If he let go of either, I would fall (and neither one of us wants that).

What this doesn’t tell you: Turns out that the last six years (especially this past year, when I didn’t attend school) of core work has improved my blood pressure/standing tolerance. My hip flexors are looser. I can stay up for way longer than I could before. Boo-yah.

I don’t know how apparent the difference is through pictures alone, but I’ve noticed a change.

 

Here’s also a video from another recent workout (all sounds that seem random are probably from other people in the gym).

That’s right, we’ve moved beyond simply standing there and hoping that I don’t faint.

What it looks like: I’m lifting something up and down. The aide standing in front of me is spotting me in case I fall forward.

What I’m actually doing: I’m lifting a weighted bar up and down. My trainer is still blocking my knees and holding my hips in place (more so than he would be if I were just standing there). If you’re wondering why my trainer is bending forward so much, it’s because he doesn’t yet trust me to lift the bar without hitting him in the face, so he moves his head. Yeah, at this point, I wouldn’t trust me either.

What this video doesn’t tell you: Although this might look like an arm workout, this actually targets the core. Every time I lift the bar and place it back down, I am bracing my back (my ENTIRE back, whoo!), and some of my abs. Additionally, I have zero video proof of this, but the bar used to be way lower earlier this year.

Also, the quad belly has gone down slightly, so that’s pretty sweet. It would’ve gone down more if I hadn’t eaten baked goods everyday this past year, but baked goods are awesome and I regret nothing.

You may wonder whether I can feel my legs while I do these exercises. The short answer is yes, but the longer answer is that while my sensation is not 100% there yet, I can currently feel when my legs bear weight. I know when my joints are bending and my muscles are sore, but my control over their movement is non-existent to trace. There are days when I recover some new sensation, or some type of movement becomes easier, but every improvement is gradual. Just getting to a point where I can do standing balance exercises without feeling like I’m going to faint has taken a long time (probably longer than it would’ve if I hadn’t gone to college and graduate school, but I wanted degrees). Because my blood pressure, balance, and strength have improved so much, I’m able to do more standing and walking exercises (meaning walking with a lot of assistance – more on that in a later post).

All this is to say that this is where I am with my standing right now. I’ve still got a ways to go, but I’m happy to see some improvement. While pop culture portrayals of disability often depict individuals who recover overnight, or over the course of a montage, actual improvement takes weeks, months, years, and even decades. I offer my story as a boring, yet realistic, attempt at staying healthy and fighting the effects of paralysis. It seems dull, and some progress seems so slow that it appears nonexistent, but when I compare where I was in 2010 to now, I realize I’ve accomplished quite a bit.

Huzzah!

Sled Hockey: First Attempt

Prior to this past Saturday, I had never tried an adaptive sport before. Ever. But I know they exist. There’s rock climbing, rugby, tennis, cycling, etc. Basically, any sport that exists has an adaptive counterpart. These counterparts often receive far less attention than their able-bodied versions, even though both are ridiculously hard to play well. Don’t believe me? See this video of professional hockey players playing sled hockey.

I could ramble about the lack of coverage of adaptive sports (unless you’re watching the X Games, which does a surprisingly good job of incorporating adaptive events into their main televised schedule), but this is going to be a more personal post instead, because I tried an adaptive sport and want to gush about it.

First, why did it take so freaking long to try an adaptive sport? Three reasons:

  1. Free time: As in, I didn’t have much of it. My physical therapy schedule takes up about 14 hours of my life at school per week, and about 20 when I’m home. It’s hard to find time to travel to a place that does anything adaptive.
  2. My inner ableist thoughts: When you grow up able-bodied and then become disabled, your mind has already been tainted by a society that values adaptive sports less than their abled counterparts. The hospital I stayed at for inpatient never suggested adaptive sports, and so I didn’t think they were a worthwhile option, and paid little attention to adaptive sports. It wasn’t until I watched videos of adaptive sports that I realized how awesome they look.
  3. I needed an excuse: If I tried an adaptive sport, it would have to be in a facility close to home, and I would have to be okay with asking my mother to drive me (because I don’t have a driver’s license/wheelchair-driver-friendly vehicle).

Then my gym, Push to Walk, hosted their annual summer boot camp. This camp features events such as a group exercise day, a trivia night, and a talk from a motivational speaker.

This year, they had sled hockey. It was taking place literally an hour and a half after I finished my Saturday workout, and in a facility that was pretty much on the way home.

It looked like I was going to try sled hockey.

So, what is sled hockey? Well, it starts with a sled that you sit in. There are two blades underneath your seat (the width between these blades varies depending on your skill/comfort level, or if you’re the goalie). Once you’re in the seat, your legs are straight out in front of you, with a strap underneath your ankles/lower legs to keep them from touching the ice. You also are strapped into the seat, so that when you fall down (whether intentionally or accidentally), you’re still in your sled, and not sprawled out on the ice. You also have two small hockey sticks that double as your means of mobility. Each stick has picks at the bottom that are driven into the ice to propel you in most directions. You also have to wear a lot of safety equipment, because I cannot stress how similar hockey and sled hockey are. Players move quickly, there’s a lot of contact, and I’m pretty sure some of these players have lost teeth at some point (which is just my speculation, because I never asked any of the players I met about this).

As my mother drove me and my sister (I had asked her to take pictures of my inevitable hockey ineptitude) to the rink, I took a, “What on earth was I thinking?” selfie.

I reminded myself that I did mostly long distance running in high school, in no small part due to my lack of hand-eye coordination and poor reflexes. Hockey is fast, requires equipment that you have to pay attention to, and, yeah, good reflexes are kind of a necessity.

But I wasn’t completely terrified. It was my first time in a hockey sled. I wouldn’t be good enough to go too fast and careen into a wall. Falling over was inevitable, but I’d fallen on the ice plenty of times before (although these were all while I was able-bodied).

Once we arrived at the indoor hockey rink, we went inside and saw that the NJ Freeze, a sled hockey team, was doing a demo game.

Holy crap, they played rough. I mean, I shouldn’t have been surprised, but the speed at which they moved, and the rate at which they changed direction was mindblowing. They collided with each other and with the walls, and the clangs that accompanied each hit made me feel slightly queasy. Yes, yes, I knew that none of them were going to hit a newbie like me with such force, but still.

Push to Walk helped to run the event, which meant that they were going to have one of their trainers on the ice once the demo game ended and the people who wanted to try a sled got to do so. The trainer, Chris, happens to be the trainer that I primarily work with, so I felt no qualms at all about making the, “What on earth was I thinking?” face at him every time I heard a clang on the ice.

“Want to sit in the sled and get a feel for it?” he asked.

I stared at the sled. Boy, that looked close to the ground. That meant I’d be close to the ice. Like, super close. Thank goodness I packed a hoodie. Oh my, I was actually going to do this.

“Suuuuuure.”

Gosh, that syllable was dripping with enthusiasm.

Me and Chris
My “what on earth was I thinking?” face, accompanied with Chris’ “I’m definitely about to start cackling” face. This is a pretty accurate representation of the pre-sled-hockey-attempt situation.

The game ended and it was time to get on the ice. I had to borrow one of the hockey players’ helmets, because my size wasn’t available. Chris helped me get my elbow pads on, gave me two hockey sticks with picks in them and gloves, and strapped me into the sled.

IMG_0785
Chris is strapping me into the sled so that I don’t fall out. Ah, it’s happening!
Full Gear
Ready to get on the ice!

Then Chris brought me onto the ice, where all the NJ Freeze players were skating around.

IMG_0786
This answers my, “So how do I actually get onto the ice?” question.
On the Ice
On the ice! Ice is slippery. I’m staring at the sticks and wondering, “So…how do these work?”

I may have yelped once he pulled me onto the ice. But then a woman (yes! There’s a woman on the NJ Freeze!) skated over and started instructing me on how to propel myself forward efficiently.

First Push
Turns out that if you don’t push both sides with equal force, you will not go straight. Oops.

When I felt myself start to drift to the side, I tried to put a stick down and ended up turning left and slightly hitting her sled. I quickly apologized (hey! I do have a reflex!), and she replied with something to the effect of, “Don’t say sorry in hockey. I’ve been hit way harder than that.”

Getting the Hang of It
Attempting not to veer the wrong way or capsize.

I bumped into her a few more times before I finally got the hang of a very basic level of slow steering.

IMG_0783
Moving!

I thanked her for the lesson and started to wander around the rink.

I asked one of the other players how to transition from propelling with the hockey sticks to actually using them to hit a puck. I have some video from it.

The players were super nice and helpful. After the lesson, I wandered around the ice with a puck (which, after watching my sister’s video, looks a bit like I’m playing with a puck because I have no friends).

Alas. But can you imagine that the thing you use to hit the puck is also the thing you need to steer and move? One of the players told me (and I’m paraphrasing here) that it doesn’t really matter if you’re a lefty or righty, because you have to rely on both sticks to steer and shoot.

My mind flashed back to elementary school, when I learned how to play tennis. My forehand with my right hand was great, but my backhand, which involved grabbing the racket with both hands and swinging on my left side, had a 5% success rate. So when one of the hockey players passed me the puck on my left side, I missed. Minding both sides is hard.

About forty-five minutes into learning things and wandering around the ice (I even took a few shots on goal at one point), I started to feel slightly relaxed. This was actually kind of nice. I had gotten the hang of propelling forward and avoiding a collision with the wall.

Then Chris skated out with a hockey stick (the type used by able-bodied players) and I let out an, “Oh no.” Chris is used to hearing things of that nature from me, so I don’t think he was offended.

“Want to pass the puck around?”

“Sure!”

Within five minutes, I had fallen over on my side on the ice. Turns out that when you reach for a puck on your left side and try to hit it with some level of force, gravity takes over. Chris came over and helped me back up. This happened again less than a minute later. Sigh. I had been doing so well. Sadly, I do not have any photo evidence of my passing attempts with falls (my sister had taken quite a few pictures by this point and had decided that was plenty).

I was on the ice for about an hour, and I have to say, it was unexpectedly a lot of fun. The Freeze players were so friendly and helpful. I wish someone at one of the hospitals I went to had mentioned that this was an option. Granted, I was in a lot worse shape back then. I had poor grip strength, terrible balance, and a much weaker upper body.

That said, I’m stronger now, and I’m about to move to New England, a place that takes its hockey very seriously. I’ve checked, and there is indeed a sled hockey opportunity around the Boston area. Provided I can actually get to a hockey rink, I think I found a sport that I want to get better at.

Thanks, Push to Walk and the NJ Freeze Sled Hockey team!

IMG_0784

In retrospect, regardless of my ability level when I was first hospitalized, I would have liked to try an adaptive sport sooner. If you have a physical disability and have the time, I highly recommend checking out any adaptive sports in your area. They’re a great way to get/stay in shape, to socialize with others who have disabilities, and to do things that usually get left out of a traditional physical therapy regiment. For instance, I’ve been encouraged to check out Brooklyn Boulders’ adaptive climbing, which I may do in the future.

By the way, I’m shamelessly plugging my gym here, but Push to Walk is an amazing non-profit that provides workouts for people with spinal cord injuries and other neurological issues. If you’re ever feeling generous, you should totally donate to them.

Push to Walk’s Facebook (for more sled hockey pictures)

Push to Walk’s Instagram

The Northeast Sled Hockey League