Agency and control. Two words that have become the center of every accessibility class I teach. Autonomy, and technologies that support them are at the heart of the work that I do.
But let me back up, re-enter my body, and own this moment. I am sitting on my couch crying. It has finally hit — one more hit in the ongoing series of outrages. Yesterday’s Supreme Court ruling is takes away agency and control, personal autonomy, and puts it in the hands of the government. As a disabled person, my fight is often about who should decide things. The insurance company that has refused to pay for treatment I or a loved one needs, determining that it is “unnecessary”, overriding both patient and doctor. A medical board that defines my condition and the treatment for it in terms that cause many doctors to deny me care. A university representative who tells me that I cannot have an accessibility need met, or that meeting it will jeopardize my career and expose me to the anger of my tenured colleagues. A professional organization that determines (over my objections) that including me in an important professional peer review opportunity in an accessible fashion would harm the outcomes of that process.
None of these examples are about abortion, but in all of these cases, I was interacting with individuals who told me their hands were tied because even if they supported my requests to decide for myself what was right for me and my loved ones, they simply could not do what I asked because the decision was out of their hands. I’m not describing something new here, these are just examples of structural barriers to access. And so I fight. I take on my professional organization and work to change it. I push my way up the administration hoping someone will take my side. I fight the insurance company, the state healthcare authority, and anyone else who stands in my way. I travel to a different state and doctor for treatment, or pay for treatment out of pocket since I am lucky enough to be able to afford that.
Having to fight such battles can risk our safety, may upset people (or organizations) who have power over us, and may require breaking rules and laws that restrict our autonomy. And this brings us to the possibility of surveillance, which may be used in enforcement. Apps, and devices, have increasingly become part of life, and necessary for healthcare management and accessibility, both critical for disabled people.
For example, and here I shift into a more speculative space informed by those around me, I might use a Fitbit to monitor my heart rate. Or, although I am a lipreader, I might increasingly use captioning not only because of more online meetings, but even in person, because of masking’s impact on lipreading. I might use Internet enabled hearing aids that have access to my audio environment. I might depend on a smart speaker as an accessibility solution.
What happens to the data that all of these devices collect? The FitBit could discover that I am pregnant. Changes in vocal fatigue during pregnancy means voice recordings may be able to be used to detect pregnancy (not to mention that search queries might reveal my condition). It is possible that captions could be used for surveillance too. As others have pointed out, privacy has eroded. For example, it is common to see data collected on one platform impact experiences on another. If any of this information is disclosed to the state, it could be used against me if I need, or get, an abortion. This puts my personal autonomy over my body in direct conflict with my body’s accessibility needs.
I was one of those who asked for CHI to be fully remote. I intended to attend remotely. Due to my disability travel is difficult and attending the entire conference would not have been worth the cost physically. Additionally, I face higher personal and family risk with COVID; and caregiving responsibilities at home.
However, when I received the Social Impact award, I decided it was important to attend in person to make the most of the opportunity this represented to talk about social impact. I decided to avoid indoor meals if possible and limit overall exposure; did not attend any evening parties; attended most of the conference remotely even when I was in New Orleansand tried to socialize outside when possible (it was too warm some of the time).
I truly embraced the hybrid model for CHI as a result (and am very grateful to the organizers for working hard to make both virtual and in-person attendance possible). I spent Tuesday and Wednesday morning in person; the awards dinner in person; and everything else online, including some synchronous programming Wednesday afternoon and Thursday morning and many hours watching talks asynchronously on Thursday and Friday. So far, I am still negative, but given recent events I attribute that as much to luck as my choices about what to attend.
I attended two workshops. Both were at their heart about inclusion, and both worked hard to explore inclusion from multiple perspectives. One was focused on disability, the other on making. My main take away is the breadth of both of these communities and gratitude for my chance to get to know about researchers who I wasn’t aware of in both. I think workshops are particularly critical to networking in the era of remote participation because of the ways in which they bring people together with shared interests. Slack supported networking at both.
At the hybrid workshop we found ourselves in a “lunch break” with no virtual equivalent, we explicitly had a conversation about networking and what people were hoping to achieve. The sharing in this conversation was vulnerable and moving and highlighted how important it is to consciously make space for networking time when remote.
Virtual Only Events
My longest synchronous virtual-only segments were Wednesday after about 10:30am and all day Thursday. I attended from my hotel room. The town hall worked great virtually, as did the social justice event I attended, but being in person just before them highlighted how “dry” such events are in terms of interpersonal connection. I also struggle with remote question asking because it is so hard to change the contents of a question between when you ask it and it is read aloud (context can change in the interim).
One of the least dry/favorite events I attended was on data and design, where the session started out with an interactive multi-step Miro board activity. This is a screenshot showing a gestalt view of the thoughtful planning that went into this (names occluded for privacy). Over the course of an hour we worked our way through a combination of activities on this Miro board and breakout rooms.
One unique aspect of having traveled to New Orleans was the “physicality” of the virtual experience. In one extreme example, I accidentally left my phone in the NOLA sun by mistake when attending a session from my hotel’s roof deck, and my network connection went down due to the phone overheating! I could not reconnect until I wet it down and blew on it. It didn’t affect much as I just increased the speed of the livestream until I caught up. Overall, though, being in my hotel room, ordering local food, having the chance to connect with a friend 1:1 in between things, and having the time to center the conference, all made the experience much better than any prior virtual experience.
I also spent many hours on what I might term “asynchronous virtual events” on Thursday and Friday. I watched live sessions (such as award talks) that I had missed, and watched, coded and wrote up all of the relevant talks that I had missed during the week (such as Monday when I was traveling, or during parallel sessions). Whenever I watched a talk that I had a question about, I made an effort to email the first and last author with my question and a compliment, just as I might have approached them after the session. I am still answering emails about this three days later, and have even been offered collaboration opportunities. This effort has been significant, and included a sort of qualitative coding to do my trip report. I don’t usually take the time to synthesize a conference like this, and at CHI’s current size in terms of the variety of papers I could select from, I found it an incredibly relevant and fruitful experience.
My first hybrid session (I was in person) was an interesting opportunity to see some of the unique challenges to hybrid sessions, from a missing session chair (turns out they were virtual) to no presenter (the talk is recorded after all) to unclear understanding of the backup plan if delay becomes an issue. I participated in a hybrid session remotely twice (including one of my workshops) and experienced some awkwardness in not knowing when I was expected/able to speak up as a virtual attendee.
Overall, though, I experienced something very similar to what others have said to me: being virtual, or hybrid, feels like a whole different conference than in person. You, and other remote people, are in your own social space even if you are looking at the same talks as in-person people.
I have several takeaways from this mix of experiences. Networking is better in person (no surprise) but I think that can be improved by going out of ones way to send emails and/or discord/slack messages to folks about their work (just as you might approach them on stage after a talk); and by creating synchronous and asynchronous opportunities to connect about goals and networking needs. Community building needs more attention, especially longitudinally. Visibility requires explicit attention for remote presenters. And Redundancy is critical to an accessible and reliable experience. Finally, Synthesis helped bring CHI together for me. I enjoyed most of CHI’s content remotely (see the other half of my trip report for more on that) — and more than any recent virtual experience: the trip was a lesson in the value of truly creating space for conferencing, even when remote.
Networking is one of the aspects of in-person conferencing that translates worst to virtual. However, my experiences this week showed me that with a concrete plan in place, it is possible to do much better even in virtual/hybrid settings. I also learned from how diverse networking needs are and that I definitely am glad I asked what folks were looking for.
I think asking about networking needs more often, and earlier, could better guide networking planning. Much more structure for this is needed than in person (though one might argue that even in person structure helps folks who are more marginalized within the community). For example, my best virtual networking experience last year was at an event that was clearly labeled in terms of purpose, and thus drew people who could support that purpose and/or sought it. It is possible to create small intimate gatherings even online, and we should try to find more opportunities to do so.
I also found myself regretting not planning ahead more. Several of us were in Seattle during one of my workshops — we could have made the effort to all be in the same room. I hope we can experiment more with such models for the next (small) conference I attend virtually. I think smaller conferences (workshops may be too small to have much co-location?) are the easier place to start with such efforts.
A word of advice to students: It really helps to have a web page of your own that describes your interests and highlights the most relevant work you do. One advantage of virtual networking is that I could google everyone I came in contact with to find common interests. Yet many of the people I googled only had a linked in page. You can use off the shelf blogging platforms for free to make a website and still have a nice look and feel (I use WordPress for my group, for example, and some of my students use their page on my site, while others have their own websites).
Building Lasting Communities.
I am by no means an expert on community building (for that, see Kraut & Resnick) However, one thing that occurs to me is that we can be more strategic about building virtual networks that last, and we especially need to do that in this era. For example, there is already a slack for the maker community in HCI++. Why not have a fabrication-related workshop invite people into a channel in that space rather than an entirely new slack that is likely to be shut down or die off shortly after the conference ends? I have the same thoughts about the CHI 22 specific discord. Are we doing these things to gatekeep access, and what do we gain (and lose) from those choices? How can we better ensure that people know about, and build on, existing virtual communities?
An important loss for remote presenters in particular is the visibility of giving a talk to a bunch of like minded folks and then engaging with them right afterwords. I’m not sure how to solve all of that, but I think small things help, like making sure that your face is visible throughout your recorded talk. I gained a lot from taking the time to send an email to a student or their advisor when I saw a talk I loved, this feedback is missing for many online presenters, and also resulted in conversations that were valuable to me.
Relatedly, I think that recorded talks create new opportunities for visibility (what Michael Correll calls history). I would love to see more of this freedom of access. For example, it would be interesting to consider a new model that allows more people to participate in workshops than submit position papers — more like a SIG model — so more people can benefit from the networking opportunity of even just knowing about each other. I understand that submitting something is an important way of showing interest, and I think this requires more thought, but I believe there are ways to work through these challenges (for example who presents versus who attends).
When technology failed, having redundant forms of access was really helpful. Discord & Hubb complemented each other; as did Zoom and Youtube. This was a prescient choice by the organizers as it was needed multiple times over. It also contributes to overall accessibility.
One area of redundancy that I only partly engaged with was timing. Being able to attend things asynchronously is part of this, but I had the advantage of always being in a time zone that worked for synchronous participation if I wanted / was healthy enough for it. I would love to see more of the multiple touchpoints that CHI introduced in 2021 in the future, to add networking redundancy to the existing emphasis on content redundancy.
CHI is a firehose, and it’s easy to be overwhelmed. Even more so when working from home and just “sampling” parts of CHI now and then. By traveling and/or canceling other activities (I did both), I was able to get much more out of the conference. Watching things I had missed, and synthesizing what I learned, really helped me to take lasting value from the non-networking aspects of it. It also helped with networking, as I connected with people by email, and even introduced my students to authors (by email) and content (by sending students links of interest).
In the end, was it worth attending in person? I absolutely benefited from the time away and the networking opportunities. Depending on whether I test positive, the scales may tip the other way, though. Even if I do not get COVID, my body has required 2 full days of rest after the travel home to be semi-functional today (3 days after my flight). This is a cost I can afford to bear on a sabbatical year, but it becomes increasingly less appealing as my career matures.
Regardless, my belief that CHI should not have been in person stands firm. My opposition to an in-person CHI was never about my personal gain, it was about equity for all of the people who would like to attend, and the risk to attendees. Both of those continue to be concerns. Particularly so if we move away from innovations that convey the benefits of in-person conferencing for remote attendees. I fear that the extra effort necessary to create an equitable experience online, due to current state of our technology and knowledge about how to effectively support remote networking, will suppress innovation in this space when it already takes so much out of those organizing events.
My best hope is that the experience of attending in person can be of value in guiding us toward a better future. I believe that the future must include virtual only events that center community and connection. I also see room for innovation. I’ll end with some questions and ideas rather than answers. Answers will only come with time.
What if every journal paper was released with the same 8 minute videos as CHI talks? Could we organize safe regional in-person networking events that coincide with conferences? Could we form a truly active discord community that featured topical office hours and networking events similar to the equity talks the EC organized in structure, advertising, and participation? How could SIGCHI benefit from and foster community around speaker series such as the Future of Work conversations and the Web Series on Computational Fabrication? Could the SIGCHI EC financially sponsor young faculty invested in and in need of innovation in this space, to do experiments this year in ways that would meaningfully create space for them to organize and try out satellite and networking events? Will the CHI SC commit now to adding a virtual conference to their sequence, as an experiment if not as a promised ongoing event?
I’ve had many disabilities over the years since I first identified as disabled during graduate school due to the inaccessibilities I experienced as I was navigating a bad repetitive strain injury. But this last month is the first time I’ve acquired a new disability rapidly, without any significant illness impacting my energy or cognition, and with my eyes wide open regarding disability rights, activism, community and so on. I have had a very compressed, and diverse experience of ableist and discriminatory responses to my disability as a result, along with some very positive experiences.
What happened? I lost my voice. The details of why and how are besides the point, but I slowed speaking over about 10 days and then stopped entirely for the month of November, starting up again very slowly in December, though I can only tolerate a little speaking, and mostly use it at home. Luckily I and my youngest son both started learning ASL in September for fun. Given my RSI I decided it (combined with writing on a small portable whiteboard) was the best option and have rapidly increased my vocabulary. ASL is currently my primary mode of communication.
To reiterate: I’m not in pain, tired, unable to concentrate, unable to stay awake, and my ability to use a computer/do my job is not affected, unlike with other disabilities I have. I’m not worried about my future, I know my rights, and am generally in a position of power. UW gave me access to sign language interpretation within a less than a week after I stopped speaking, despite my rudimentary knowledge of ASL, and I’ve had some major and exciting breakthroughs in my communication ability thanks to that. I have multiple students and colleagues who have stepped up to help interpret, and even tutor me, in ASL. I have the financial means to pay for needs that are not being met, such as supplemental interpretation when no one is available through UW. As a result, overall, I’ve had a lot of success in managing this experience. Yet, here are some of the barriers I’ve encountered.
Assuming one disability implies another: When asking for ASL interpretation, I’ve been told I needed an audiology evaluation even after clearly stating I had merely lost my voice. This is also a form of unnecessary gatekeeping, if enforced (it wasn’t).
Assuming not being able to speak means not being able to work: I had multiple people (including at least one in a position of power over me) suggest I consider going on leave, despite my clearly stated plans to use ASL for communication. To me, this comes across as ableist in assuming that my loss of voice implies an inability to work.
Shaming and gatekeepingfor not knowing ASL well enough As mentioned above, I started learning ASL in September. My grasp of it was rudimentary when this started (I’ve learned quickly since but am still a beginner!). When I tried to set up IP relay so that I could make phone calls, I had to verify my address over zoom. The person I met refused to slow their signing down and ended the call abruptly when I explained I was new to ASL.
Direct Discrimination: When I tried to make my first IP relay call, after finding another way to verify my address, the company I was calling hung up on me. I tried three times, asking the relay operator to explain the situation in different ways. They hung up every time (and lost my business in the process!).
Ableist Jokes: I’m basically good humored about the whole experience, but I find jokes about “turning me off” (by not knowing ASL/turning off IM) and preferring me “silent” to be offensive and ableist. And with precisely those same people it can be hard to communicate about why.
Expecting accommodation to come entirely from me: I’ve been frustrated by multiple one-way conversations in which someone tells me something but does not account for the fact that voice travels differently than written communication or communication through an interpreter.
Disbelieving doctor: Apparently someone who has lost their voice should look upset, sound like they’ve talked much more than their voice can handle, and definitely not use ASL or other means to communicate. Also if they cannot speak they are probably also having trouble understanding simple concepts. Or at least that’s the message I got from my voice therapist who thought they needed to speak to me sloowwlly and loouudly, called my portable whiteboard a “crutch” and did not take my expressed needs and goals seriously.
In essence, this is the first disability experience I’ve had that is defined entirely by the numerous barriers put up by others. I’m not particularly surprised by the individual things I’ve experienced — many I’ve experienced before, and all are in line with disability studies theory about interpersonal and structural bias and discrimination.
I will admit to being surprised by the sheer amount of discrimination I’ve encountered in a single month. I suspect this is mostly about being in a new situation. But I’d argue that is exactly when compassion and support are most needed!
There are many take aways here, but since I write for a mostly academic audience, I want to highlight three in particular: (1) If you experience disability discrimination, remember this should not become normalized and is not acceptable. Reach out if you need a hand, or an ear. I’m always available. (2) It is hard work to overcome these sorts of barriers. Remember all the extra work your peers, mentors, and mentees who experience disability have to do. (3) This is slow work. It takes time to document things, find doctors, learn to use new types of accommodation. Give folks grace, compassion, and understanding as needed.
I’ve come to realize over the years that one of the most important things we fail to do as academics is to share the reality of the priorities that we juggle and the ways we spend our time. Just a few days ago my husband and I took the time to talk about this with our son. Our ordering varied, but for both of us, family and health were among those at the top of the list, and our jobs were not first. My very top priority, personally, is sleep, followed immediately by family, because I need the former to prioritize the latter, due to my Lyme disease.
I think sometimes that our students don’t see this and we all worry about sharing that anything other than our jobs is a priority. So today, despite the looming CHI deadline, I am taking the time to make this post. I actually wrote most of it about two weeks ago. I decided to describe the day I’d just had, and spent a few minutes on it before stopping in the middle of a sentence, interrupted by something I have long since forgotten. Here’s what I wrote:
Today I am heartbroken, and angry. Distracted and busy, with many things that are anything but my job. I have a big personality when I want to, and the full force of it is concentrated elsewhere right now. That is ok, and it is as much part of me as being an academic.
I woke up this morning with a lot on my mind. So much that I popped awake right at 5:30am and had no hope of going back to sleep. Among other things, I was worried about our daughter’s insurance appeal case, which had probably been decided on Monday.
I made a concerted attempt to start the day out on a better foot, and after a nice talk with my spouse I made myself a coffee and finished reading the Sunday newspaper. I then began working on my new class for Spring 2021. I’ve been working on that now because I know I won’t have any time for it during the Winter quarter, and I’m unlikely to have much time for things once the kids start school since my daughter’s care needs may increase.
From 8:30-11, I met with students, and then had a directors meeting about the CREATE center and a mentoring meeting at 12:30. Just after 11, the insurance company called. I always take local calls because they are almost always medical-related, and handled that quickly making a plan to call back after hearing the important thing: That the appeal had been denied.
Needless to say I was very upset. My co-director kindly and with understanding asked if I still wanted to meet, and I proceeding because although upset I didn’t want to let them win or re-arrange anyone else’s schedule.
I knew the rest of the day would not involve much work of the traditional academic variety. Instead, I needed to go to battle again. I first spoke with the insurance company to find out more about what had happened. I was able to glean little from the call aside from the fact that my daughter’s case was one of 6 discussed that hour. This was our last internal appeal and our next step is an external board. I plan to use that process, but I also believe it’s time to shed light on the situation. After a conversation last night with a friend, who is going through the same appeals process with her children I was convinced that the insurance companies are more interested in making money than doing the right thing when it comes to our children’s futures.
I spent some time doing advocacy work to try to get her case attention, and helping my friend with her case, and then was interrupted by her need for care — a bad migraine and a number of spiking symptoms were making her extremely uncomfortable. 100% attention switch, fetching of supplies including hot chocolate, back and forth between that and my computer.
Another 100% switch to try to focus on my class, and a few urgent things (a paper revision and a slide deck for a funder) but I finally gave up after realizing I was wasting too much time on Twitter and Facebook and watched a movie about women scientists and then made dinner. What’s left of the evening will involve walking the dog…
I can’t tell you how that day ended. That in itself is a reflection of life as a caregiver and a parent and really any person coping with these unprecedented times. What I do know is this: in any time but especially in 2020 we should not judge the priorities we set ourselves, or others choose. That self care matters as much as all the rest, and when it is possible to do it, I will not feel guilty for doing so. And that imperfection, whether an unfinished or delayed blog post, or an abbreviated effort on a slide deck, is still worthwhile.
Why did it make me uncomfortable to tell this story? First, I personally know many members of the SIGCHI EC, and I know how much they care about accessibility, and how much hard work, and change, has already happened thanks to AccessSIGCHI‘s efforts. I worry that my blog post will make them think that these efforts have gone unseen.
Second, I was very much hurt and angered by my experience, and it also made me feel unsafe. Perhaps this worry is misplaced, but by bringing it all up again, and making it more public, it seems possible that folks will think I behaved unethically or even go further in prosecuting this accusation.
However, I believe that taking risks is how we make progress, and I deeply hope that my love for SIGCHI, and for the individual volunteers within and outside of the EC, will help carry the day and allow this challenging moment to create a positive coming together rather than a rift between SIGCHI and its constituent communities.
The Accessibility work undertaken by the EC is very very important. However it must be complemented by equally important work that addresses structural inequity. As I said in my blog post
When work is done by marginalized groups, such as the R.A.C.E. team and AccessSIGCHI, it is especially important to nurture and cultivate their perspectives. The cost of the commitment of individual time to these efforts should not be underestimated, especially given the likelihood that many such individuals are continually being asked to put extra time into representing their community as well as advocating for themselves. Even small blows to these efforts have the potential to eliminate a gift that could otherwise help our community to better itself.
I’ve been reflecting a lot recently on what it means to identify as disabled.
Disability is a social construct in many ways, and the social model of disability argues that structural problems (and social expectations) are a root cause of disability. I would argue also that disability is an individual identity. A disability identity something that has helped me make sense of multiple complicated and difficult situations (but I believe it is relevant even in a simpler situation, disability is not by any means a synonym for difficult). It can provide guidance for things such as self-advocacy, education planning, and the use of assistive technologies.
For example, a disability identity might give someone a way to think about the school or work environment in terms of how it can better meet their needs. Accessible technology is part of the solution, but so are modified exam formats that provide an equal footing in measuring knowledge; or the ability to rest when needed (and to have access to quiet, restful spaces). These and other similar choices can have a big impact on inclusion. Yet we still cannot count on administrators remembering this, and people with disabilities and their allies face many small battles all the time to ensure equity along these fronts. When someone says (as I have heard recently) ‘people should go home to sleep’ or ‘we’ll just test this child using the same method as other children so we can see where they stand’ they are advocating for equality rather than equity, for measuring impairment rather than disability.
A disability identity can also suggest the need for political action. This can include volunteer work, protest, advocacy, and more. It gives people permission to go beyond the status quo, to not accept a situation that excludes them or takes away their control or impacts their safety. Instead, they are empowered to ask why this is happening, and how it can change.
A disability identity can also be a guide in personal action. For example, when I was going up for tenure, I sat down with as many potential letter writers as I could to talk about a very important concept in disability: Disclosure. About half of the people I talked to were surprised we were having a conversation about this because they knew and understood that it was neither legal (in many circumstances) nor appropriate (ever) to disclose my disability in any letter they wrote for me without my permission. About half were surprised that I brought the topic up, or even offended, because they had believed they would be helping me by writing about all that I had overcome on my way to tenure. To be clear, I asked all of them not to disclose, and that should always be the default, unless you have explicit permission to say something.
Relatedly, a disability identity highlights where and how we can improve smaller individual interactions by emphasizing the importance of respect and agency. As such, it suggests
The difference between being curious (an important way to understand the world) and questioning whether something is needed/laughing (even good-naturedly) about it (which can be invalidating)
The value of checking in (asking how someone is doing, or if something is ok) rather than assuming (saying that “you seem fine today, that’s great”, for example) or avoiding (talking about someone rather than to them for example) –
The importance of giving space. Sometimes it is better to let someone decide when to talk about things rather than pushing for information or constantly asking.
The importance of trust. It is so important never to accuse someone of using their situation to get something they want. It is also important not to assume someone can’t do something just because they look a certain way or have a certain impairment.
The importance of acceptance . Letting someone navigate in their own way and not bombarding them with expectations and questions
A disability identity might also change how we approach a research project. In my class on accessibility this quarter, we have frequently asked the question: How would a disability identity change this project. The answer often lies in the questions we ask of a work. For example, we asked — How does this project increase the agency and control of the person it serves? Who does it include and exclude and in what ways? Were people with disabilities used in the project, or were they partners, or even leaders? Should they be authors of this paper? What happened to them after the project ended?
I want to highlight some differences between these questions and the ones immediately obvious from a social model perspective. That suggests questions such as: How does this work tear down structural barriers that they might be facing? Does this work question the status quo or hold it up? What is the context in which this work was done, and what happened after the project ended? These are also important questions, but they cover different ground.
What has fascinated me when talking about these issues with others is the level to which they can be confusing, confounding, confidence-chilling concepts for people without a disability. If you are uncertain what you can say to someone, or feel attacked when people ask for change, keep in mind that you might be missing important perspective, or that the work of educating others about disability might involve a broad brush that catches you up in it even if you are doing the right thing.
Finally, I’ll note that disability identity can also be empowering. If you have a disability, and have not thought of yourself in those terms, or considered those possibilities, it can be interesting to introspect about them. Ask yourself what a disability identity might give you. It does not need to define you, but it might still be part of you.
A friend happened to send an interesting article about chronic illness and academia my way today, and it made me realize that a post on the topic is long past due.
For those of you don’t know, I have Lyme disease. I was diagnosed in October 2007 (pre-tenure), but had been ill for at least a year before that. I blog about my Lyme disease at http://gotlyme.wordpress.com (inventive title, I know :)). A special section of the blog focuses on work and illness. Lyme disease was debilitating for me, and I was on disability (part time) during part of my treatment. I am now much better, but still have relapses about once a year and bad days more often. Prior to my experiences with Lyme disease, I had a very difficult repetitive strain injury that also caused severe impairment (typing at most 30 minutes a day at first, 2 hours a few years later). This occurred at the start of my PhD and lasted into the beginning of my first faculty position.
I don’t want to go into details about those illnesses here, rather I’d like to speak about the relationship between having an invisible chronic illness and being an academic. I have had more than one person approach me asking for advice and guidance as they deal with their own illness, usually by word of mouth. Illnesses like mine (and many other chronic illnesses) are mostly invisible, and it can be difficult to find information about how to cope with them. When other academics disclose their own struggles and process (such as Elyn Saks’ article about working with schizophrenia, or Gerry Gold’s article on the social context of long term disability as an option for those who are considering leaving work because of their illness) it can be eye opening and inspiring for those of us trying to find our own way forward. Equally important is access to facts, such as the AAUP’s report on how faculty members with disabilities should be accommodated.
For me personally, one of the biggest changes I’ve had to make (and most positive) has related to my approach to managing my time. Time management has been a theme since early in my graduate school career and I have learned never to take time for granted, how to prioritize, and when to cut back. I discuss some of the things I learned on my Lyme blog: managing an unpredictable illness, and trying to manage a full time job on a half time schedule.
Another big challenge has been disclosure. It took a great deal of time for me to value the label “disabled” as a valid description of myself, and I have always been sensitive about it not only personally, but also with respect to my work. I never filed anything official with the university during my graduate school experience. I did not speak of my impairment during my job search until I reached the negotiation stage. I did however confront our dean at the time when I thought he wasn’t doing enough to prevent others from suffering the same preventable injury I had. At CMU, I spoke with my department chair as soon as I had a diagnosis. However, I waited to file anything official until I desperately needed a parking permit, and one close to my building. Even then I accepted second best up until the day when I almost collapsed trying to get from that spot to my office. Finally fired up, I marched (well hobbled with my cane) straight into the deans office and demanded something better.
Although I have disclosed much of my experience at this point and freely speak of it when it seems pertinent, there is still one area that I rarely discuss: the cognitive impacts of my disability. At my worst, I would sometimes spend more hours each week in fog and pain than out. Thanks to my very supportive husband, I would grab my computer and do essential thought-work whenever the clouds cleared and he’d take the kids so I could do so. Even so I read one journal paper (submitted before my diagnosis) in horror when the proof came back a year later. I have experienced moments in meetings with students when I could not find the words to express my thoughts; been reminded that I just said the opposite of what I meant, and experienced large black spots in my memory. These moments (though thankfully mostly behind me) were experienced as fearful signs of the possibility that I might not be able to continue as an academic. Most difficult is when they occur in public contexts, such as the difficulties I had at a talk I gave a few years back, and the program committee meeting that led to a blog post on the difficulties of re-integrating into academia after a long pause.
But what has defined the positive side of my experience, more than anything, is the support of those around me. I will never forget hearing that my advisor almost got into a fight defending the truth of my claims that I could not type. Or the day that an angry stranger mumbled about supporting the disabled as he opened a door for me when the push button failed and my hands lacked the strength (this led to my eventual acceptance of the label disabled and a related lifelong interest in assistive technology research). I have had long phone conversations with a colleague in our field who experienced chronic fatigue. I have been given a role as a collaborator when I sorely needed it. Instant Message chats galore have enabled remote and close colleagues to help me work through difficult patches and decide strategy. I have been driven home countless time by a close friend when I ended my day too weak to bike or walk, and been given writing aids (as a graduate student with RSI) and more recently teaching leaves, co-instructors, extra TA support, classes scheduled around my disability, and control over my tenure clock.
If you experience a chronic illness, I encourage you to go after the support you deserve, accept help, and seek advice. Drop me a note any time. Check out the Chronic Illness and Academia forum at the Chronicle of Higher Education. Talk to the people you trust, and get advice about when to say more. Stand up for yourself when you need it, and if people are not supportive, find other friends. Above all, know that it is possible to be both disabled and an academic, if that is the path you choose.