Tag Archives: thoughts

Advice, Leaves, Uncategorized

A guide to short-term leaves (in U.S. Universities)

One of the many things we don’t talk about much in academia is the variety of short-term leaves available, when to use them, and how to navigate them. Short-term leaves serve a variety of purposes and yet many of us know little about them or feel as though some of them are more prestigious, and therefore more valuable or acceptable, than others. This is especially problematic because most require some degree of negotiation to set up, and the specific experience may be heavily influenced by who runs your unit. In reality, they are all important and valuable for different reasons, and you have a right to make use of them. To help, I want to share the types of leaves I’ve had and what value they’ve added for me.

A few notes: All of my experiences are in the U.S. context only.There are some variations across institutions (and states within the U.S.) that I will not get into; also I have not tried every leave there is (although I have tried many). However, although the specific unit in charge of approving a leave may vary, as may the paperwork, all leaves share a need to talk things over with a variety of stakeholders, and to control service commitments.

Personal Leaves | Parental Leaves | Sabbatical | Industry

Personal Leaves: FMLA / Disability

The first type of leave is a personal leave, typically for medical reasons. These can be useful if you have a serious health condition, or in the case of FMLA (Family Medical Leave Act) if a family member has a serious health condition, to bond with a new child, and in a few other situations. Figuring out which to use is a bit confusing, but one way to think about it is that FMLA protects your job (you can take up to 12 weeks of FMLA leave in any 12-month period) but may not include pay, depending on your university. Short term disability pays a fraction of your salary and lasts 3-6 months. The U.S. Chamber of commerce has a web page that compares them.

I used short term disability leave during the most difficult period of my time with Lyme Disease . This may only kick in after your FMLA is used up, and can also be half time. Note that long-term disability leave is a very different beast — unlike any of the other leaves mentioned here, once you start long-term disability leave, you cannot return to work without approval. To avoid this, I took a 50% short term disability leave and my department covered the other 50% of my salary.

I have struggled to use FMLA (outside of childbirth) and in fact failed to invoke it at least twice when (in retrospect) I should have. I have used it once. In order to use it, I had to get a doctor’s note (about my child’s situation) and talk with my department chair about what percentage leave I would take and what releases I would get. It was very important to talk this over with my department chair, in addition to formal channels (HR), especially since HR still hasn’t properly processed my leave. I was approved to stop almost all service and to receive a teaching leave during the term I took FMLA, and scheduled myself for (approximately) 50% work time that term. My department covered the other 50% of my salary as they would have if I were teaching.

One of the things I immediately noticed about personal leaves was that being on this type of leave required constant self-advocacy and decision making about what, and how much and to whom, to disclose. I often had the sense, because I was working part time, that people assumed it was fine to continue expecting me to be fully present. In fact, most people I encountered, both internal to my institution and external, had no idea I was on leave until I told them. Vacation messages only helped a little since they don’t repeat that often. It felt a little like managing an invisible chronic illness (which I do every day) because I had to choose how many details to disclose about my family situation.

Taking FMLA also very clearly highlighted how releasing myself from work often required me to personally ask others to take that work on. Whenever you take a leave, it is likely that some of your teaching and committee work will simply be canceled. However, in other cases, colleagues will need to pick up that work, often colleagues in your area of expertise, which may be a very small group of people. Although your department should try to protect you from this, you may be asked to negotiate some of that work with these individuals yourself, possibly spending social capital in the process. The social pressure can be very high when others make you feel you are burdening them, making it harder to stand your ground. This is especially true when you are still working part time, making your responsibilities more ambiguous. Despite that, taking FMLA was absolutely worth it — no one takes FMLA without a good reason, given the internal and social barriers to taking it. The time I regained to use for care and rehabilitation of my family member was precious.

One final note: I’ve been told to take a leave, when I did not need or want it, on multiple occasions due to my disability. Although both people who told me this were well meaning, their words were extremely harmful. In the first case, the person talking to me strongly implied that I would not get tenure if I did not go on leave. I reacted by asking my department to put me up for tenure a year early, and highlighting my disability identity (and implied rights) in conversations relating to my tenure case. In the second case, I was already a full professor and was able to simply insist on my right to an interpreter (what I had asked for in the first place). In both cases, these comments were ableist, institutional pressure for disabled people to go away rather costing the institution time and money.

Parental Leaves: Arrival of a new child

My husband and I have twice taken child-related leaves. In both cases when we added a new child to our family, we both took leaves. One of these leaves was unpaid (my husband did not qualify for one in his first job, but took a leave when we switched universities around the time our youngest turned 8 months old) but the others were all through progressive policies at two different universities that promised both parents a leave for an entire academic term. This is still not a given at all universities today, but it was very important for both of us and our commitment to faculty life to get it. In universities where it is not officially supported, there may be informal ways to get this, which may not be well publicized, so ask someone who recently had a baby, or a mentor, for help.

Although it should seem as though a sanctioned university policy that is frequently used by parents would be fairly straightforward, even this leave required navigating complexities. First, different department chairs treated it very differently, with one begrudgingly asking how my teaching would be covered if I left and another generously inquiring about my pregnancy and waving off teaching as an issue the department would figure out. Next, with these leaves comes the question of stopping one’s tenure clock. I did, and I would recommend others do as well, I don’t think anyone is hurt by it and making it commonplace removes pressure. That said, it is worth talking over with a mentor, and when I stopped my clock a second time for my second child + a move across the country only to end up at a place with an extended tenure clock, I ended up undoing that choice later. Finally, while it is important to treat all parents equitably in this leave process, it is also important to understand that these leaves are not the same for all people. For example, a parent who is nursing 8 hours a day may have a very different productivity level while on leave than a parent who has a partner or other support at home full time, helping with the new child, during their leave.

That said, the social capital costs of this leave are probably lowest of any I’ve taken. I’ve been lucky to be generally surrounded by folks who exuded happiness to help and joy for my coming new addition. I wish all leaves were approached with the same generosity.

Sabbatical

In contrast to FMLA, sabbatical is a type of leave that is far more familiar to most academics. I’ve taken two since I started faculty work, a “travel-battical” involving world travel with a five and seven year old and the other a “stay-battical”. I’ve already written extensively about my travel-battical, and wrote very little about my stay-battical. What I haven’t written about, however, is how sabbaticals come about.

I can speak most directly to the university experience. It is fairly common to allow for one approximately every 7 years. However, this is not guaranteed to happen — typically you need to apply, sometimes it is “only when negotiated” and if you don’t pay attention, you can easily end up pushing it off because of a move to a new university, administrative duties, or lack of time to prepare a good case. In addition, lots of faculty want to take them, so there is a sort of turn taking that happens within departments/areas. I’ve also found that both required a lot of negotiation to achieve my goals — in one case, I had to navigate significant university politics, in the other I discovered important rules too late. More specifically, most universities do not pay your full salary during sabbatical, so some faculty work at a different institution, or apply for a Fulbright or other grant, during their sabbatical. I found out that one such opportunity fell through after I had filled out university paperwork that affected my ability to flexibly respond to the missed opportunity.

That said, once you are approved for a sabbatical, most people respect it with a similar generosity of spirit to parental leaves. You still have to protect your boundaries — I strongly recommend saying no to all or most service during sabbatical, or if you must take something on, make it something unusual that you can only do because of the sabbatical.

Industry

Industry leaves are different from both sabbaticals and personal leaves. The rules around them vary more from university to university than any other leave I’ve made use of. In addition, even within a university, industry leaves can look very different. For example, different universities may limit the percentage leave you can take, or the number of terms you can be on leave. Most also allow you to work overtime for industry (“consult” one day a week). My only experience with an industry leave was a 50/50 split.

At my university at the time, an industry leave of 50% or more resulted in a teaching leave that term, which would otherwise have cost me 75% of my salary for the same term (paid from grant/gift money). Instead, my department covered 50% of my salary that term, and the company I was working for paid 50%. That said, it was not any easier than teaching — if anything harder, since I had not been an hourly employee reporting each hour worked in a long time. However, overall, my industry leave was, like my sabbaticals, easily understood by anyone I mentioned it to. I did not feel like I need to disclose anything to ask for release or time away to do what I needed to do.

In conclusion, I hope that you consider taking leaves when you need them (but not when you are pressured into them). Wherever you are, it is probably a good idea to ask mentors about the type of leave that you taking, as there will likely be institutional rules and personalities you should be aware of. Finally, disclosure about leaves may be very personal, and you shouldn’t have to explain yourself (but may at times feel pressure to).

Accessibility and Inclusion, Disability, Thoughts

Bodily Autonomy, Surveillance, and Access

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.

There are many reasons that the supreme court ruling overturning Roe Vs Wade is concerning for people with disabilities, as highlighted in this coalition letter by AAPD, ASAN, awnnetwork, Be A Hero, Bazelon Center, DREDF, CAP, Little Lobbyists, and Women Enabled International. The sad truth is that for people with disabilities, and many other marginalized groups, yesterday’s ruling will not stop abortions from happening. But it will force people to make impossible tradeoffs between safety, access and autonomy.

Accessibility and Inclusion, Thoughts

Reflections on Deafhood and A11yhood

During my sabbatical, one of my goals has been to start learning ASL. As I mentioned in a prior post, this effort was briefly accelerated by the loss of my voice in November, but I have continued to take ASL classes well past that experience and am now a student in ASL 103. In addition to the language, these classes have introduced aspects of d/Deaf culture I was not previously aware of. One concept in particular, Deafhood, and its parallels to modern disability justice and culture, really resonates with me.

Deafhood is a reaction to the historical trauma and oppression of d/Deaf people and community that became particularly acute during the mid to late 1800s when Oralism began to forcibly replace sign language education around the world, something that would continue for about a century (Ladd, 2003; Murray & Greenwald, 2010). Hereditary deafness combined with acceptance, culture, and language, unimpeded, had the potential to nurture strong, integrated, and positive communities such as found in Martha’s Vineyard (Groce, 1985). Yet the Oralist movement tore this apart.

In this same time period, the “science” of eugenics came to the fore in America, fed both by prejudice and advances in scientific understanding, led by scientists such as Mendel and Darwin (Nielsen, 2012). These beliefs were used as a basis for excluding immigrants (and fed into racial bias and stereotyping) (Nielsen, 2012), including d/Deaf immigrants, but their impact on Americans with disabilities was even more profound. Forced sterilization, institutionalization, experimentation and murder became “acceptable” practices imposed on people with disabilities (Nielsen, 2012; Sheffer, 2018).

For d/Deaf people and communities, a twist of fate may have provided some protection from the worst of the eugenics movement: Alexander Graham Bell, whose mother and wife were deaf, was an influential participant in the eugenics movement. Although an advocate for Oralism and eugenics both, perhaps because of his personal relationships, he argued against “negative” eugenics (meaning forced sterilization, institutionalization and worse) for d/Deaf people, and instead developed a policy centered on “positive” eugenics — breaking the genetic line, so to speak, by discouraging intermarriage (Greenwald, 2009). Although he may have provided some protection, Deafness was certainly still mentioned in forced sterilization laws across the country, and eugenics of any sort, combined with Oralism, extremely harmful to d/Deaf people and community.

Intellectual capability, and the ability to support oneself financially, were both reasons given for the eugenics movement — essentially that people with disabilities were somehow harming society/non-disabled people by being less intelligent, and independent, than their counterparts (all false assumptions). Ironically, d/Deaf people in Martha’s Vineyard had above average income (Groce, 1985, p. 50), something Oralism (with its negative impacts on education), and lack of community, could only hurt.  Although Oralism was no longer the only option by the time Paddy Ladd began his 2003 ethnography, “Understanding deaf culture”, the legacy of this history of colonization and oppression remains today. Further, one might argue that it is now codified in the medicalization of “treatment” for deafness, i.e. the focus of medical professionals counseling families with deaf children to use cochlear implants, a technology literally designed to improve the effectiveness of oralism, over ASL (Kite, 2020). 

Ladd’s ethnography, in which he coins the term Deafhood, is a theory of culture grounded in the Deaf experiences of identity, language, and society. Ladd, and by extension Ladd’s definition of Deafhood, recognizes that identity is a process. As described in the definition on deafhood.org, “Deafhood as a journey that a Deaf person undertakes to discover his, her or their identity and purpose in life.” This journey is not an isolated, individual experience but rather a reframing, and recreation of a rich, linguistic, humanistic culture which is also engaged in a radical act of self definition. 

I see many parallels between Deafhood and other cultures that have arisen from the ashes of erasure and oppression. As the comedian Hannah Gadsby remarks in her show Nanette, in describing her experience of oppression as a child, 

“When you soak a child in shame, they cannot develop the neurological pathways that carry thought… you know, carry thoughts of self-worth. They can’t do that. Self-hatred is only ever a seed planted from outside in. But when you do that to a child, it becomes a weed so thick, and it grows so fast, the child doesn’t know any different. It becomes… as natural as gravity.”

Similarly, questions about self worth are deeply influenced by our cultural and individual historical treatment of disability, particularly in Western culture during the industrial revolution and beyond. Disability is not only a minority identity that through eugenics and other means was hidden and erased, but even worse, disability was the justification for erasing, enslaving, and institutionalizing people from many other minoritized identities (Nielsen, 2012). Even the Deaf community tried to distance it from disability due to disability’s stigma (Nielsen, 2012, p. 136). The legacy of these attitudes and policies remains today, with the prison population, for example, having a much higher rate of disability than average, and disability feeding into the school to prison pipeline (Mahon-Reynolds & Parker, 2016). 

Although it lacks a literal common language, or a name, I would argue that similar to Deafhood, there is a movement toward a disability cultural identity connected to the disability justice movement, what I chose to call A11yhood in the title to this post. As Neil Marcus writes in his poem, “Disabled Country”, “If there was a country called disabled / I would be from there / … / In my life’s journey / I am making myself / At home in my country” This journey is based in shared experience, as highlighted in the movie Crip Camp. It is also political in nature — one might argue that modern disability culture is rooted in activism, which began at least as early as 1935 (Nielsen, 2012, p. 133) and continues today.  The rise of the independent living movement created cultural centers for people with disabilities in many cities, further strengthening this change. Today, disability culture plays out on social media, with strong voices such as Alice Wong (Wong, 2020) and Imani Barbarin, as well as collectives such as Sins Invalid (Berne, 2018) leading the way. 

Similar to Deafhood, I have observed the journey implicit in a modern disability justice identity in my own journey into acceptance and power as a disabled woman; and in the transformation a disability identity has provided to the multiple people I have offered it to as an explanatory frame for their disability experience. I have seen the power of this, particularly in settings that integrate community and support, as well as activism and advocacy. Each of us must learn about our identity, and purpose, and power, as disabled people. We must learn the vocabulary of community, of oppression and of activism. We must learn A11yhood.

References

Ladd, P. (2003). Understanding deaf culture. In Understanding Deaf Culture. Multilingual Matters.

Murray, J. J., & Greenwald, B. H. (2010) How the Past Informs the Present: Intersections of Deaf History with Deaf Studies. Deaf Studies Today! (Volume 4)

Nielsen, K. E. (2012). A disability history of the United States (Vol. 2). Beacon Press.

Sheffer, E. (2018). Asperger’s children: The origins of autism in Nazi Vienna. WW Norton & Company.

Greenwald, B. H. (2009). The real “toll” of AG Bell: Lessons about eugenics. Sign Language Studies, 9(3), 258-265.

Groce, N. E. (1985). Everyone here spoke sign language: Hereditary deafness on Martha’s Vineyard. Harvard University Press.

Kite, B. J. (2020). How the medical professionals impact ASL and English families’ language planning policy. Psychology in the Schools, 57(3), 402-417.

Mahon-Reynolds, C., & Parker, L. (2016). The overrepresentation of students of color with learning disabilities. DisCrit—Disability studies and critical race theory in education, 145.

Nicole Newnham and James LeBrecht. Prod. (2020) Crip Camp: A Disability Revolution. Dir. by Good Gravy Films and Higher Ground Productions,. 108 mins. (https://cripcamp.com)

Wong, A. (Ed.). (2020). Disability visibility: First-person stories from the twenty-first century. Vintage.

Berne, P., Morales, A. L., Langstaff, D., & Invalid, S. (2018). Ten principles of disability justice. WSQ: Women’s Studies Quarterly, 46(1), 227-230.

Disability, Thoughts

CHI Trip Report: Comparing Remote, Hybrid and In Person

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 Orleans and 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.

It’s worth noting that others have already written excellent articles on this topic, including Michael Correll’s very thoughtful much more holistic commentary on the future of academic conferences; and Amy Ko’s detailed experiential trip report from CHI 2021, I encourage you to check those out as well if interested in this topic.

Workshops

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.

A picture of a miro board. There is too much to visually process at detail, but it's clear that there are at least 3 sections to this, each with multiple activities within (reflected in multiple colored areas with labeled circles for putting badges into and responding within.
The Miro Board from the Data and Design SIG on Tuesday Morning

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.

Hybrid Events

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.

Lesson Learned

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

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?

Visibility

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).

Redundancy

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.

Synthesis

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).

Final Thoughts

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?

Accessibility and Inclusion, Thoughts

CHI Trip Report: Visualization, Fabrication and Accessibility

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I regularly take notes when I attend a conference, and especially when attending for the first time after several years I have the sense that there is so much to absorb and enjoy! I have been much less consistent about doing this in a public way, but this year I’m particularly trying to do so for the sake of the many people who can’t attend in person or at all; as well as all of us who can only go to one session when so many are worth attending!

It would be a very long blog post if I summarized all of the great accessibility work, as that is an increasingly large subset of CHI work. I’ll focus on things relevant to areas that are of growing importance to me — visualization and fabrication, along with a brief section on some accessibility highlights. To learn more about the experience of attending remotely versus in person, see my other trip report.

Visualization Sessions

I attempted to attend a mix of paper sessions and other conversations around data and accessibility. In the SIG on “Data as Human Centered Design Material” I had a number of interesting conversations. I spoke with Alex Bowyer who looks at personal data use. One important use of data he mentioned to “create evidence.” Interesting to think about “data for activism” in this context. Another interesting conversation from that SIG centered on how to summarize complex data for retrospective interviews, and accessibility concerns here. Another challenge is how to design apps that use data effectively in the field/live use, again accessibility concerns arise. Further, how do you properly generalize machine learning and visualizations? How do you improve start up, and scale well? How do you support customization of both visualizations and machine learning?

The session on accessible visualization was my next dip into visualization. The first talk talked about audio data narratives for BLV users. Their study highlighted how audio narrative could help to highlight features that might be hard to hear otherwise through strategies like foreshadowing breaking up the basic sonification. The second talk was on 1dof haptic techniques for graph understanding, for BLV users. The authors explored the value of static 3D printed and haptic moveable cues for helping with graph understanding tasks such as comparison. An interesting technique, though sonification also held its own in their data. An interesting question to me is whether a dynamic chart with a piece of flexible material over it (to “smooth” the line) would be better than the slider in terms of the experience — similar to the 3D printed chart, but dynamic. Next, a retroactive fix for a range of charts inaccessible to screen reader users was presented in VoxLens. The authors highlighted the state of online visualization today (which is truly terrible) and then provide a real solution to this problem. The solution combines sonification, high level summaries, and NLP based queries, all automatically supported given simple configuration in JavaScript about axes and a pointer to the chart object. It would be interesting to see them take advantage of ideas from a related paper on proactive visualization exploration support agents in this work. The next presentation focused on improving color patterns to address color vision deficiency. The final paper in the session focused on infographic accessibility.

Some additional papers also looked at accessibility. Joyner et al looked at visualization accessibility in the wild. They analyzed visualizations and surveyed and interviewed practitioners and found the vast majority were accessibility novices; 30-40% did not think it was their job and 71% could think of reasons to eliminate accessibility features even though the acknowledged accessibility was important. They also highlight some difficulties in creating accessible visualizations, such uncertainty in what and how to do (such as how to deal with filters), as well as lack of organization support and lack of tool support. “ComputableViz” support composition such as union, difference, and intersection. They discuss the potential for this approach to make a visualization more cognitively accessible. The intermediate representation used in this work is a relational database derived from the vega-lite specification — I think this has great potential for other accessibility applications including better description; change monitoring; end-user authoring of sonifications; and more. Finally, MyMove is a new method for collecting activity data from older adults.

Two studies made use of simulation. I call them out because of their thoughtfulness in doing so — simulation can have negative impacts and is usually not an appropriate substitute for working with people with disabilities. One study modified visualizations to simulate color deficiency on published visualizations and then crowdsourced large scale data about their accessibility. I think this is a reasonable application of that technique for two reasons: (1) the benefits of data at this scale are high and (2) the specific disability and task structure are unlikely to create bias either in the study data or in the participants (i.e. negatively influence their opinion of disability). Another good example of a study which used hearing people instead of DHH people was ProtoSound. This allowed them to collect data about the accuracy of non-speech sound recognition by their system. However they made use of DHH input throughout the design process.

I also want to highlight research that I though had interesting applications here that were not accessibility papers: “Data Every Day” was interesting because of its emphasis on personalized data tracking, including customization, data entry and authorship, both things that are under-explored in accessible visualization research. “Cicero” allows specification of transformations to visualizations declaratively — thus making visualization changes computationally available which creates many interesting opportunities. “CrossData” is an NLP interface to a data table which provides a fascinating model for authorship and exploration of data. Although the authors didn’t mention this, I think this could be a great way to author alt text for charts. “Diff In The Loop” highlights the ways that data changes during data science programming tasks as code changes. The authors explored a variety of ways to represent this– all visual– but highlights why change understanding is so important. It also raises issues such as what time scale to show changes over which would be relevant to any responsive visualization interaction task as well. Fan et al’s work (VADER lab) on addressing deception made me wonder whether accessible charts (and which chart accessibility techniques) can perform well on visual literacy tests. Cambo & Gergle’sq paper on model positionality and computational reflexivity has immediate implications for disability, and particularly highlights the importance of not only whether disability data is even collected but also things like who annotates such data. Finally, Metaphorical Visualizations translates graph data into arbitrary metaphorical spaces. Although the authors focus on visual metaphors, this could be valuable for audio as well.

There were several tangible visualizations, again relevant to but not targeting accessibility. Shape changing displays for sound zones; STRAIDE used interactive objects mounted on strings that could be actuated to move vertically in space over a large (apparently 4ft or so) range of heights to support rapid prototyping of moveable physical displays. Sauvé et al studied how people physicalize and label data. They explored the relation between type and location of labels, which may have implications for intuitive design of nonvisual physical charts. Making Data Tangible is an important survey paper that explores cross-disciplinary considerations in data physicalization.

Finally, a look at applications, and here we see a mix including some accessibility focused papers. CollabAlly, can represent collaboration activities within a document, and provided an interesting synergy with the earlier talk this same week, Co11ab that provided realtime audio signals about collaborators. This dive into what makes tables inaccessible suggests concrete viable solutions (and check out some other interesting work by this team). Graphiti demonstrated a thoughtfully designed approach to interacting with graph data extracted dynamically with computer vision, a complex and intricate exploratory visualization task. Xiaojun Ma and her students created a system for communicating about data analysis by automatically producing presentation slides from a Jupyter notebook. Working jointly and iteratively with automation and a machine, from a source notebook, could make it easier to make those slides accessible. ImageExplorer vocalizes description of an image with auto-generated captions to help BLV people identify errors. I wonder what one might need to change in this approach for auto-generated (or just badly written) chart captions. Two important learnings from ImageExplorer were the value hierarchical, spatial nature of navigation supported; and the need to support both text and spatial navigation. Cocomix was focused making on comics, not visualizations, accessible to BLV people, but I think the many innovations in this paper have lots of applications for change description and dashboard description. Saha et al discuss visualizing urban accessibility, exploring how different types of secondary information and visualization needs vary for different stakeholders.

Fabrication Work

The vast majority of fabrication work this year did not directly engage with accessibility. That said, I saw a lot of potential for future work in this space.

I first attended the workshop, Reimagining Systems for Learning Hands-on Creative and Maker Skills. We discussed a wide variety of topics around who makes, how people make, and what we might want to contribute to and learn about those experiences as a community. We talked about who is included in making as well. Some provocative discussions happened around whether digital tools or physical tools are a better starting place for learning; how we engage with diverse communities without “colonizing” those spaces; and whether we should “claim” diverse crafts as making or not; The ways in which new technologies can inhibit learning (everyone makes a keychain tag); and the need to educate not only students but educators. Another interesting discussion happened around how time plays out in making and adds challenges when things take time to print, grow, etc etc. Another topic that came up was the digital divide in access to maker spaces, i.e. what may be available in rural communities. Another was tutorial accessibility and whether/how to improve that. Some of the interesting people I learned more about include: Jun Gong (formerly at MIT, now at Apple; does everything from interaction technique design to meta materials); Erin Higgins (introducing youth in Baltimore City to making); and Fraser Anderson (whose work includes instrumenting maker spaces to better understand maker activities). I also want to highlight some students I already knew about here at UW 🙂 including my own student Aashaka Desai (working on machine embroidered tactile graphics) and Daniel Campos Zamora who is interested in the intersection of fabrication and access (ask him about his mobile 3D printer :). 

The first fabrication session I made it to was a panel that placed fabrication up against VR/AR/Haptics. Hrvoje Benko and Michael Nebeling were in “camp AR/VR” and listed challenges such as interaction devices; adaptive UIs and so on. Valkyrie Savage, “camp fabrication” talked of interaction and sensing (as well as the sensory systems); Huaishu Peng & Patrick Baudisch talked about fabrication + interaction; small artifacts; and AR/VR. The wide-ranging discussion mentioned machine reliability; accessibility and 3D printing as a public utility; using AR/VR to bridge the gap between a physical object that almost fills a need and reality with AR/VR (repurposing); and/or business (i.e. Amazon vs Fab). I will focus on what I see as accessibility challenges in the arguments made: Can have anything delivered to our door in 2 hrs? I would claim that our process today works for mass manufacturing but is not customizable to people with disabilities. Next, a potential flaw of AR/VR is its dependence on electricity — if we are to make meaningful, useful objects, physicality is essential for people who either cannot count on having power, or who depend upon a solution being available all the time. Another concern is bridging from accessible consumption to accessible, inclusive authoring tools. As Valkyrie Savage argued, physicality addresses multiple types of inclusion better than VR/AR. Lastly, materials were discussed briefly, though not from an accessibility perspective (though material properties are critical to successful access support in my mind).

Moving on to individual papers, I was excited to see multiple people talking about the importance of programming language support for parametric modeling and physical computing (an interest of my own). For example, Tom Veuskens‘ ideas about combining WYSWIG and code for parametric modeling look highly intuitive and fun to use. Valkyrie Savage talked about the importance of this for novice learners and lays the idea of a Jupyter notebook style approach to physical computing design. Tom Vueskens et al. provide a beautiful summary of the variety of code based approaches to support re-use in the literature. Another interesting and I think related set of conversations happened around how you understand making activities. An example is Colin Yeung’s work on tabletop time machines. The concept of being able to go back and forward in time, ideally with linkages to physical actions, project state, and digital file state, is really interesting from an accessibility perspective. Relatedly, Rasch, Kosch and Feger discuss how AR can support learning of physical computing. Finally, Clara Rigaud discussed the potential harms of automatic documentation.

In the domain of modeling tools, accessibility did not come up much. While many papers mentioned custom modeling tools, none of the talks mentioned accessibility for authors/modelers nor did they report on studies with disabled people. The most obvious challenge here is BLV accessibility; but to the extent that generative design is simplifying the modeling experience and computationally controllable, I think there are some very easy ways to improve on this situation. I was actually most intrigued by a non-fabrication paper’s relevance to both fabrication and accessibility: HAExplorer which the fabrication person in me sees as an interesting model for understanding the mechanics of motion of any mechanics, not just biomechanics. In addition, visualizations of mechanics raise the possibility of accessible visualizations of mechanics.

The haptics session had multiple potential accessibility applications. FlexHaptics provides a general method and design tool for designing haptic effects using fabrication, including in interactive controllers; while ShapeHaptics supports design of passive haptic using a combination of springs and sliders which together can control the force profile of a 1D slider. An interesting accessibility side effect of this approach is to modify existing objects by adding both physical and audio effects at key moments, such as when pliers close. In some configurations, the system can also be easily swappable, thus allowing for manual selection experiences based on context. ReCompFig supports dynamic changes to kinematics using a combination of rods and cables (which can be loosened or tightened by a motor). They create effects like a joystick, pixelated display with varying stiffness; and a range of haptic effects such as holding a glass of liquid, or stiff bar. 3D printed soft sensors uses a flexible lattice structure to support resistive soft sensor design.

Interesting materials included Embr, which combines hand embroidery with thermochromic ink, which characterizes 12 of the most popular embroidery stitches for this purpose and supports simulation and design. The results are beautiful to look at and I wonder if there is potential for creating shared multi-ability experiences, such as combining capacitive touch-based audio output with simultaneous visual feedback. I loved multiple aspects of FabricINK because of its sustainable approach (recycling e-ink) as well as the way it opens the door to fine grained displays on many surfaces. Luo it al present pneumatic actuators combined with machine knitting. ElectroPop uses static charge combined with cut mylar sheets to create 3D shapes (it would be interesting to know how well these would hold up to exploratory touch). SlabForge supports design (for manual production) of slab based ceramics. Finally, the Logic Bonbon provides a metamaterial edible interaction platform. Nice to see the range of materials+X being presented, and lots of interesting potential applications of these low-level capabilities.

Another grouping of papers explored capabilities that could increase the accessibility of objects with additional information. M. Doga Dogan et al created InfraredTags, which allow embedding of infrared QR codes in 3D printed objects. Although not a focus of the paper, this has accessibility value (for example an audio description could be embedded). This does require an IR camera. Pourjafarian et al present Print-A-Sketch, which supports accurate printing on arbitrary surfaces, including reproductions of small icons as well as scanning and line drawing. Although not a focus of the work, it would be very interesting to think about how this could be used to create tactile and interactive graphics, or to annotate existing documents and objects for increased accessibility. It would be interesting to think about inks with other kinds of properties than conductive (such as raised inks) as well.

Although my theme is accessibility, disability justice is an intersectional issue that must consider other aspects of design. In that vein, I want to highlight two lovely examples of sustainable design. ReClaym, which creates clay objects from personal composting, and Light In Light Out which harvests and manipulates natural light computationally.

There were a few papers that focused on accessibility, all in the applications space. Roman combines object augmentation with a robotic manipulator to support a wide range of manipulation tasks not easily manipulable by robotic arms. The robot is augmented with a motorized magnetic gripper, while the target object is augmented with a device that can translate rotary motion into an appropriate motion and force profile. Mobiot is a system that supports the creation of custom print and assembly instructions for IoT mobile actuators by leveraging recognition of objects in a known model database combined with demonstration. My student Megan Hofmann presented Maptimizer, a system which creates optimal 3D printed maps was very synergistic with 3D printed street crossings for mobility training. TronicBoards, which support electronic design. FoolProofJoints improves ease of assembly, which although not tested with disabled participants seems to me to have direct accessibility benefits. One final application was material adaptations for supporting accessible drone piloting. This involved both software adaptation, physical control adaptation and posture adaptations. The authors supported multiple disabilities (and multiply disabled people); and open sourced their toolkit.

Other Disability/Accessibility Highlights

Dreaming Disability Justice Workshop: This workshop discussed academic inclusion and the importance of research at the intersection of race and disability that is strongly influenced by both perspectives in conjunction (as opposed to a “this and that” model). Also just not erasing that history (e.g. see these examples of Black, disabled, powerful women). Some of the interesting people I learned more about include:  Cella Sum (politics of care in disability spaces); Frank Elavsky (accessible visualization); Harsha Bala (an anthropologist); Erika Sam (Design Researcher at Microsoft) and Tamana Motahar (A PhD student studying personal informatics and Social Computing for empowering marginalized populations worldwide).

On Tuesday morning I attended Accessibility and Aging. The first talk explored the experience of older adults sharing the work of financial management. Joint accounts & power of attorney are both problematic mechanisms. Banking assistance needs fall along a spectrum these are two blunt for. These concerns seem common to many domains (e.g. health portals; social media accounts; etc). The second talk was on The third was a paper I collaborated on, access needs research design was presented by Kelly Mack. How can we empower researchers to anticipate the broad range of disabilities they might encounter? Anticipate (make things accessible from the beginning) and Adjust as needed. End by Reflecting on things like power dynamics and access conflicts. Next, Christina Harrington‘s award winning paper addressed communication breakdowns in health information seeking using voice for black older adults. Her paper addressed critical concerns such as what dialects are supported by voice systems.

In reviewing other accessibility-related talks, I want to highlight the importance of end-user and multi-stakeholder authoring of interaction and experiences. Dai et al discussed relational maintenance in AAC conversation between users and caregivers. Seita et al show how DHH and speaking people can effectively collaborate when using a visual collaboration system like Miro. Ang et al discuss how video conferencing systems can better support the combination of speaking / signing / interpreting in mixed ASL/spoken language video conferencing calls. One concern — the difficulty of dynamically adjusting communication — reminded me of challenges I’ve experienced with online conferencing as well. Another mixed stakeholder case is Waycott et al’s study staff’s role in supporting VR experiences for elders are positive. A unique case of multi-stakeholder interaction is Choi’s analysis of disabled video blogger interaction with content curation algorithms and how algorithms could better support identity negotiation and audience selection.

I also want to highlight some interaction design work. I loved the WoZ study with ASL control of voice assistants by Glasser et al. It got right to the heart of an important unsolved problem, and in the process shed light on challenges we must solve for ASL as an input language for all sorts of automated contexts. Zhao et al described user-defined above-shoulder gesturing for motor-impaired interaction design, highlighting the importance of end user control over the interaction language for things like social acceptability and comfort. Nomon is an innovative approach to single switch input. This might be amenable to smooth saccade tracking as well.

To summarize an inspiring event. I was glad to be able to review it so thoroughly, thanks to all the online talks which I watched asynchronously.

Accessibility and Inclusion, Disability, Thoughts

A month of new Abelist Experiences

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 gatekeeping for 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.

Accessibility and Inclusion, Thoughts, Uncategorized

Reviews Considered Harmful?

… my position just is that such discussions [meaning models of disability] are intellectually intriguing but seem to be of limited value for solving front-line real-world practical problems

Anonymous Reviewer

Somehow, over the past few years, I seem to have grown a thinner skin around reviews. Or perhaps I am just doing work that evokes more problematic responses. Or maybe I am learning to recognize harms that previously passed me by. In any case, I think it is time for us as a community to start a conversation about the darker side of reviewing.

What do I mean by this? Of course it is difficult to get reviews that critique ones work, sometimes legitimately and sometimes because they miss something in a paper, or are written on a bad day. Even so, peer reviews, in general, are valuable and important, and authors know that. I’ve always told myself (and my students) to think of a paper as a user interface — if the user misunderstands things, the question is not “why did the user make so many mistakes” it is “why did my interface not guide the user properly toward the right approach and away from the wrong one”. Analogously, a review is an (imperfect) reflection of the flaws in either one’s research or writing — a perfect project, and a perfect writeup, together should presumably result in perfect reviews. This of course is very idealistic, but at least close to the general goal that I think we all share.

Being a reviewer has always been a space in which we must take care to exercise power compassionately, helping the writer (often a new researcher, often a student) to learn and grow from a process that with a fair amount of randomness decides “what counts” and sets careers in motion (or slows them down). However, I’ve recently observed that the power of reviewers goes beyond mentorship and gatekeeping. Ideology, bias, and politics have become visible to me. Here are some examples of truly harmful errors which have the potential to compound other barriers to participation in our community.

Increased scrutiny for certain types of work. Papers that raise questions about the academic process (and its biases) seem to face a degree of scrutiny and nitpicking that makes it much harder to publish them. I’ve spoken with multiple others who have found this same phenomenon when doing this sort of work. This matters because these forms of inquiry are already de-valued in comparison to other forms of research, and the additional difficulties in publishing them only make this worse. It should come as no surprise that the researchers who take the time to do this sort of work are also often members of groups that are under represented in the academy.

Critique because of a political difference of opinion. I have always been taught never to escalate a disagreement with reviewing outside of the rebuttal process, and throughout almost my entire career I have adhered to that. However, a reviewer objected to the term “marginalized”, and accused us of engaging in grievance studies, stating 

One nonsensical concept the authors introduced was the use of ‘higher marginalized status’ (whatever that may mean - one presumes the authors subscribe to the strange psuedolegal theory debunked e.g. by Douglas Murray in the ‘Madness of Crowds’)

I found myself requesting help with receiving a fair review from the program chairs of the conference I had submitted to. Similarly, a reviewer of a grant proposal that included improved tools for Blind and Low Vision programmers stated:

I agree we need to include vision impaired population in the design loop, but it is not necessary for them to do the programming to implement their ideas.... It is not really necessary for those vision impaired to perform programming.

I accepted the rejection of my proposal, but contacted the relevant program officer to alert them to my concerns with this reviewer’s beliefs about who can program.

Accusations of conflict of interest as a result of deep community engagement. I used deep, community engaged work as one of several data collection strategies in a paper (other communities were also providing data). In addition to volunteering in the community, I ultimately invited a leader in the community to co-author the submitted paper. All of this was disclosed, but a reviewer felt that as a result the contribution of the paper was limited because of 

...prior relationship with [the community] compromises the interview data drawn from participants in [the community].

Sometimes the harm is not having a reviewer at all. Further compounding all of this is the difficulties that editors have in finding reviewers. The last time I was an associate chair at a conference, which was prior to the upheaval COVID-19 has caused in all of our lives, as a senior member of our community with a large network to draw upon, I had to ask six people to review a paper for every one who said yes. More recently, I submitted a journal paper only to discover months later that it still was not even in review because the editor had asked over 20 people and only had one person agree.

How can we do better? I don’t claim to have the answers here, but I think it is time to start experimenting, or at least talking more about what to do. Here are some ideas I’ve been thinking about. Please comment on this post and add your own!

Process Improvements: I think we have multiple problems that require process improvements. One is reviewer training. Also, a known process for redressing (or addressing) problematic reviews could be of value.

Open Reviewing: One way to improve review quality is oversight. However this takes even more time. Open reviewing might be another way to impact what people say without as much extra work. In addition, it could reduce the burden on authors faced with problematic reviews by allowing others to call them out and respond to them.

Limited Submission: Volume of submissions compounds all the others issues — because we have more papers to review than reviewer capacity, we draw reviewers from further afield, or earlier in their careers, than ever before. One way to address this limit the number of papers reviewed by a single author, or require some reviewing service in return. This may be hard to enforce in papers with many authors, some of whom may not even be from the same field.

Fewer Peer Review Opportunities, more Other Opportunities: I’m sure this won’t be popular, but it is possible we could also reduce volume by increasing the number of papers allowed at conferences somehow. Could we make conference participation entirely poster based, for example? This would work best if we remove peer reviewed papers entirely from conferences, so that there is no competition for those slots.

Traveling Reviewers: Lastly, we could encourage authors to only resubmit a paper with substantial revision and change tracking, by having reviewers “travel” with papers, at least within the same tier/group of conferences (maybe: UIST, DIS, CSCW, CHI, TOCHI, ASSETS, and other peer conferences). This should help to reduce paper volume and increase review consistency. It would require a process for addressing the sorts of harmful statements I mentioned above. However, that represents an improvement over the current situation where there is no process. For example, perhaps authors could request replacing specific reviewers.

Please comment! I’d love to hear more ideas for what we can do to improve things!

Disability, Thoughts

Life beyond science

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.

Accessibility and Inclusion, Disability, Thoughts

Supporting Diversity in SIGCHI

Being an ally means being uncomfortable.

—R.A.C.E. team, addressing institutional racism within initiatives for SIGCHI’s diversity and inclusion, from their blog post in Interactions Magazine blog

The R.A.C.E. team’s powerful blog post addressed material impacts of institutional racism. In support of them, I believe it is critical to tell stories even if they make both the teller and the reader uncomfortable. For this reason, I wrote an Interactions blog post detailing some of my own more negative interactions with the SIGCHI EC.

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.

A Challenging Response, Jen Mankoff, from my blog post in Interactions Magazine blog.

Thoughts

Fostering Science Education and Positive Technology Use at Home

I have been asked in a couple of different forums about how I have gone about parenting my children with respect ot technology. What came out of that thinking lacks any formal reference to literature, but it does represent my experience. I’ve always felt that despite many potential negatives (and despite being mostly a homesteading luddite sort at home), technology has an important positive role to play as well in my children’s development.

Technology today is a human creation; underlying that creation is a set of crafting skills. The ability to imagine an artificial action in the world, create an image or a movie, print a mechanical object, or send a message all depend on these skills. Yet many of our children never progress beyond simply consuming the artifacts and messages that others create. This article explores, through a series of anecdotes, my personal parenting experiences with technology and tries to shed light on some of the challenges and opportunities my family faced.

My daughter is 2 or 3 or 4. She sees phones around her, and is fascinated by them. Relatives give toy phones that light up and ring to my dismay. Parents are begged for phones. Swiping an iphone or ipad is so intuitive she can do it with ease. We work hard to put computers and phones away in front of the kids, and to do housework, play, singing, and other acts of togetherness when parenting them…. A few months (or a year) pass. I am sick with chronic Lyme disease for many months and years, and find myself learning to parent slowly rather than trying to do everything. We build a cloche, two screws at a time, cuddle, and nap together. One day I am too exhausted to get off the couch. In a fit of desperation I give in to repeated requests… to teach the children to knit, something I know is usually not introduced until first grade at their school. Am I a bad parent? One session and suddenly they’re off and running with this skill they have seen in almost every moment of quiet sitting.

We work hard as parents not to use technology in front of the children, and generally include them in our life rather than structure ours around theirs. All the same, as a parent, the questions I find myself asking about technology readiness and craft readiness are not that different whether it is digital technology, music, knitting, or anything else that the children so desperately want to participate in sometimes before they are of the traditional ‘age readiness’. I wonder why and whether one thing is worse than another. We settle on the rubric that physicality and creativity are important, but balance is equally important. Are they getting social time, exercise, play? Are they learning to handle frustration and self entertain? What is any activity substituting for that would be prefered? We try to minimize the ones we don’t like the answers for.

We are on a train. The train ride is 9 hours long, my children are 4 and 6 if I remember correctly. We have brought a movie, books, felt, yarn, conductive thread, LEDs, batteries, buttons, a multimodal cornucopia of ways to engage. We read, make yarn sculptures, walk the train. Sometime during the train ride I have the goal of learning how to make felt bracelets that can light up. The kids are fascinated. We lay the bracelet flat, but have to think about its top and its bottom and the circle that it creates when the snap is closed. Where does the thread need to go to create this effect? Can we make anything other than bracelets? What about a bookmark, that can tell you which page you were on? You could have two snaps, and fold it over to connect to one or the other depending on which page! The excitement is palpable, and the craft is more than do-able by both children. We make mistakes, plan badly, correct, eventually succeed. I wonder if I am breaking some rule by trying out a 6th grade exercise involving electricity on my 4 and 6 year olds, but I see nothing but pleasure and creativity in their response.

As a computer scientist, what has always fascinated me about technology is the power of arcane acts to create whatever I can imagine, and the importance of imagining good, useful things to create. Around this time I was also beginning to think about how to bring technology into my childrens’ middle-school curriculum, and this project was a first attempt. I am delighted by the invention of the bookmark and by the immediacy of the experience as well as the way it builds on the crafting skills my children already have.

We are leaving on sabbatical for a year. The children are 5 and 7. EBooks are big, it is 2011. Taking a library along would be impossible, but there is a plethora of free and excellent children’s literature (60 years old or older) available on amazon for the Kindle. We buy one and take it on sabbatical along with a drop spindle and a big pile of wool. We also buy the Rosetta Stone software. By the end of the year of travel, we have read innumerable books aloud. The children are used to kindles and have discovered at least one game which we ask them to stop playing. We have invented as many stories as we’ve read, and spun enough wool to knit a pair of socks by the end of Fall, which are completed just in time for Winter.

The kindle feels like a technology win. I like the fact that it is easy on the eyes, and that it lets us dig into so much great literature. Rosetta stone is like a game, but it also feels like a win. It is amazing how easily the kids can pick it up, and it helps lay the groundwork for them to learn two languages during the year we travel. I love the fact that it is so synergistic with other things we are doing (practicing as a family, working with a tutor, immersion in school). It turns out that the human tutor we see most often in the Rosetta stone software actually lives in Zurich, where we are as well. The connections between what we do in our technology, and what we do in our lives are rich and deep and our choices feel positive and right.

The children are older, maybe 3rd and 5th or 4th and 6th grade now. They have learned a little about Scratch programming, another technology that almost any crafty parent could pick up though of course I bring an ease and expertise to this because of my background. We try Raspberry Pis as well, a tiny computer that costs around $30, which they can experiment with and even destroy. We assemble 3D printer kits together because of my research.

I also want to set good examples of creative media use. I try to help with the computational things. All are unsatisfying. Scratch is so artificial. The Pis are slow, and hard to understand for the kids. Joint work is much harder in this realm. Meanwhile, technology’s negative side starts to rear its head. Among my own children and other children we know in the same age group, shockingly considering the age, some are caught reading pornographic fan fiction on a kindle, looking at pornographic videos, having their identity ‘stolen’ to text a hurtful message in their name, watching a spoof of a popular song dance video that turns out to be extremely raunchy.

I start to wonder what I have brought into my children’s lives and how I will proceed.  We have many conversations about pornography, about privacy, about how every online act is essentially public.  This feels similar to sexual education. Talking more, and earlier, but of course in age appropriate ways, is the foundation on which positive parenting can happen. Parenting this requires vigilance, openness, learning, and attention. This wondering is not confined to technology, however.  A child’s awakening to the larger world is a fragile process and I conclude that I need to be as involved and aware as possible, but I have no answers.

These early years set the tone for our work as parents in a technological world. Hard limits in the domain of ‘media consumption,’ with the understanding the forbidden is sometimes more attractive than that which is experienced, discussed, and controlled. Concrete examples of positive uses of media such as learning language, reading emails together from far-away relatives and reinforcing what they are learning in school about searching for information online and evaluating what is trustworthy. Strong support for creative uses of technology, in collaboration with local organizations that support these activities in camps and after school sessions help foster this as well. We ultimately choose to allow unlimited use of the most challenging and creative of applications of technical skills, to support passion, and to teach balance with physical and social activity, as well as other hobbies.

To foster this in a positive fashion, we create a rich home environment that included homesteading activities, craft activities, music, cooking, and we gave them both the opportunity and responsibility to participate in that. We teach them to love the act of creation in many domains. We moved into a neighborhood where both children have friends nearby. All of these things helped to fill their time and create a healthy competition with technology. We’ve reached an equilibrium where the computer is just one of many hobbies, to be used for those things it is good at. Mixed in with all of this, we allow ourselves to enjoy and be amazed by their successes, whether online or offline. And the journey continues…