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!

Accessibility and Inclusion

Fabrication Work at ASSETS 2020

I attended my second virtual conference in a week, ASSETS 2020. Once again, kudos to the organizers for pulling off a wonderful experience. It was very similar to UIST (discord+zoom), with some different choices for format — a slightly slower pace with more opportunities to take breaks. I’m not sure I have a strong preference there, but I was definitely more tired after the longer days.

One other significant difference was the lack of a video option in Discord — this choice was made for accessibility reasons, because interpreters would only be possible on zoom, and it was (somewhat) made up for by the many zoom social events. Still, I did miss the more unplanned nature of the UIST social events. I wonder if there’s a way to have the best of both worlds — spontaneity and accessibility.

There was far too much outstanding work at ASSETS for me to summarize it all, including lots of award-winning work by UW accessibility researchers (CREATE). However, in this post I want to sample a particular subset of ASSETS work: Fabrication work. I was excited to see more and more of this at ASSETS, ranging from bespoke projects such as this one-handed braille keyboard (video) to this innovative exploration of low-cost materials for making lock screens tangible which explored everything from cardboard to quinoa (video)!

One theme was making the fabrication process itself accessible to people with disabilities. For example, Lieb et al work on using haptics to allow 3D model mesh inspection by blind 3D modelers (video), while Race et al presented a workshop curriculum for nonvisual soldering (video).

Of course there was a range of papers exploring tactile graphics. For example, PantoGuide is a hand-mounted haptic display that presented meta data as the user explores (video). I particularly loved Gong et al’s study, which takes a nuanced approach to image understanding that values a variety of ways of understanding graphics:

A final theme I want to call out is in the space of physical computing, support for learning was a theme in TACTOPI (Abreu et al; video) and TIP-Toy (Barbareschi et al; video). TIP-Toy particularly interested me because of its support extended to allowing not only consumption of content but also authorship. On a completely different note, Kane et al.’s fascinating work on the ableist assumptions of embedded sensing systems was a best paper nomination.

While this quick tour by no means covers every relevant project, it does highlight the wide range of ASSETS work at the intersection of accessibility and fabrication. I look forward to seeing this area expand in years to come!

Thoughts

UIST 2020 Trip Report

I have just finished attending UIST and loved the format this year — it’s been outstanding to attend UIST remotely, and the format of short talks and Q&A format has been very engaging. I think the use of both discord and zoom worked really well together.

A little background — I haven’t been able to attend UIST regularly for quite a while due to a variety of personal and family obligations, and disability concerns. So for me, this was an enormous improvement, going from 0 to 70% or so. I imagine that for those who feel they’re going from 100% to 70% it may have been less ideal, but the attendance at the conference demonstrates that I was definitely not the only person gaining 70% instead of losing 30%

I want to speak to two things that surprised me about the online format. First, the value of immediate connection making when I think of something, and the space and time to make note of that and follow up on it right away, was striking. I was sending things to various students all morning, particularly on Thursday, when I went to so many demos and talks.

A second value was that of making connections even for people not attending. For example, I posted a question in a talk thread that came from a student who wasn’t attending UIST, and the speaker ended up emailing that student and making the connection deeper before the day ended. I don’t think this would have happened at an in-person event.

I also want to reflect on some of the content. What I was inspired by at UIST this year was the variety of work that had really interesting accessibility implications. Maybe that just happened to be my own lens, but the connections were very strong. In many cases, the technology facilitated accessibility but wasn’t directly used that way, in others the application to accessibility was directly explored. Some examples, in the order I happened upon them

This video demonstrates an interesting combination of programming and graphics. The work treats data queries as a shared representation between the code and interactive visualizations. A very interesting question is whether there could be the possibility of also generating nonvisual, accessible visualizations in addition to visual ones.

Bubble Visualization Overlay in Online Communication for Increased Speed Awareness and Better Turn Taking explores how to help second language speakers adjust their speed awareness and turn taking. However this would also be very valuable when a sign language translator is present. On the topic of audio captioning, one of the papers/demos that received an honorable mention focused on live captioning of speech, and was live every time I saw the authors, with a google glass-like interface. The major contributions of this work include low-power modular architecture to enable all-day active streaming of transcribed speech in a lightweight, socially-unobtrusive HWD; Technical evaluation and characterization of power, bandwidth and latency; and usability evaluations in a pilot and two studies with 24
deaf and hard-of-hearing participants to understand the physical and social comfort of the prototype in a range of scenarios, which align with a large-scale survey of 501 respondents. This is exemplary work that featured a user among its authors and lots of experimentation. The project uses the google speech API and live transcribe engine and can also do real time translation and non-speech sound events.

Another system, Unmasked, used accelerometers on the lips to capture facial expressions and display them using a visualization of lips outside a mask to make speaking while wearing a mask more expressive (video). It would be interesting to know whether this improved lip reading at all. Very impressive. Finally, the video below shows a system for authoring audio description of videos, a very difficult problem without the right tools. An interesting question my student Venkatesh raised is whether this could be described with crowdsourcing to partly automate descriptions.

Interface design was another theme, sometimes connected directly to accessibility (as in this poster on Tangible Web Layout Design for Blind and Visually Impaired People) and sometimes indirectly: This project allows multimodal web GUI production (video) and this project converts a GUI interface to a physical interface. It is an interesting twist on helping people build interfaces, as well as supporting physical computing and in general converting GUIs from one modality to another has interesting accessibility implications.

Next, “multiwheel” is a 3D printed mouse for nonvisual interaction (video) while swipe&switch is a novel gaze interaction interface that improves gaze input (traditionally very difficult to deal with) by speeding it up (video). Turning to interaction “with the world” instead of the computer, this system has the important advantage of giving people who are blind agency (a key tenet of a disability justice focused approach) in deciding what they want to hear about when navigating the world, by letting them use a joystick to explore their surroundings by “scrubbing” (video). The system is currently implemented in Unity, it will be interesting to see how it performs in real world environments.

On the fabrication front, several projects explored accessibility applications. In the sports domain, this demo showed a custom prosthetic end effector for basketball (video). A second project simulated short arms and small hands. While this was not intended for accessibility uses, the use of simulation is something that accessibility folks often critique and the project does not problematize that choice, focusing instead on the technical innovations necessary to create the experience (video). Another fabrication paper allowed embedding transformable parts to robotically augment default functionalities (video) and the paper that won best demo award:

This very cool demo is a tool for creating custom inflatable motorized vehicles. A bike like vehicle and a wheelchair like vehicle are demonstrated. Vehicles can easily be customized to user’s skeletal characteristics.

We chatted briefly about the potential of partial inflation for multiple purposes, pressurizing on demand, and how to add texture either at manufacture time or using a “tape on” technique, e.g. for off-roading.

Some of the fabrication work I was most excited about wasn’t directly accessibility but had interesting implications for accessibility. For example, the robotic hermit crab project (video) tied one robot to many functions making a really fun set of opportunities for actuation available. I could imagine making an active, tangible desktop a reality using such a system. Two papers provided extra support when assembling circuits and physical objects, with I think obvious potential accessibility applications, and one is a very cool general mechanism for addressing uncertainty in size during laser cutting. This can allow users with less experience to share and produce laser cut objects. Another beautiful piece of work on supports making wooden joints. Finally Defextiles supported printing of cloth using consumer-grade printer, an advance in materials and flexibility. All of these innovations help to broaden the set of people who can repeatably make physical objects, including accessibility objects. And of course I have to call out our own paper on KnitGist: optimization-based design of knit objects as falling into this category as well (video). Lastly, there was some very interesting work on velcro that can be recognized when you tear one thing off another, and laser cut, based on the shape of the velcro (video). Could you embed tactile signals in the velcro for blind people (we can after all 3D print velcro now)?

Another exciting session focused entirely on program synthesis. This paper looks at ambiguous user examples in the context of a regexp; small step live programming shows a program’s output is shown live as it is edited, and in this article users can edit the results (instead of the program) and the synthesizer suggests code that would generate those results and the last one addresses loop understanding.

That concludes a very long list of inspiring work that I enjoyed at UIST this year. I sometimes think that an advantage of missing multiple years of a conference is how fresh and exciting it all seems when you get back to it. That said, I truly think UIST was also just fresh and exciting this year. Kudos to everyone involved in making it such a success!

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.

Accessibility and Inclusion, Thoughts

Launching UW CREATE!

Link

Create logo (person with prosthetic arm holding a lightbulb) Today is the launch of the UW Center for Research and Education on Accessible Technology and Experiences (CREATE). I’m so excited to be part of this effort, which has representation from across campus. Microsoft has honored us as a founding partner and has been a huge driving force in making CREATE a reality.

There is no doubt in my mind that the time is now for launching an effort of this magnitude. Since CREATE’s  mission to increase representation and have real world impact on accessibility is especially important in a time when so much is in flux.

I also want to highlight that CREATE is not just a technology-centric center. It has a strong thread of critical disability studies running through it, and the importance of giving people with disabilities a voice, and the power to advocate for themselves, as well as ensuring that the work we do has a real world impact on the disability experience, should not be understated.

Here’s to CREATE-ing a better future by creating a more inclusive future.

Accessibility and Inclusion, Thoughts

How Action, Activism, and Advocacy Contribute to Communities

I have recently been reminded in multiple ways of the many ways that all of us contribute to making our communities better.

Communities are created in part through leadership’s actions and choices. Many of us have never received any formal leadership training, but I have been lucky to often encounter examples of leadership worth emulating. I want to say thank you to leaders who take a hard stand against something that is wrong, and pointing it out. However, it requires refusing to point fingers, or even taking joint responsibility for problems is an equally hard job that leaders have to do. I also want to appreciate the leaders whose actions show that they believe that people deserve the benefit of the doubt. That mistakes are an opportunity for growth and improvement rather than punishment. That if someone’s daily actions demonstrate their commitment to a community, this is a seed to be nurtured. Leadership is also expressed through values such as listening. Recently, I was reminded by a friend that the best way to overcome differences is to listen, and that common goals can unite us if we can put misunderstandings aside.

Of course properties are not unique to good leaders. They help to make a community better when all of us exercise them. But the test of a community isn’t just in its culture and approach to individuals. It is also about how it grapples with change. Change requires effort, not just from leaders, but also from a critical mass of people in a community, to be successful. And change can often lead to friction. Because of this it can be one of the biggest challenges that a community faces over time. And it is something that, I believe, benefits from a multi-faceted approach.

A commitment to change is often expressed by leadership. For example, consider the significant and ongoing leadership, effort and time that the SIGCHI Executive Committee has put towards many knotty accessibility problems, from publications to policy to professional events.

However, a commitment to change also depends on the actions and advocacy/education work of individuals within the community. For example, the AccessSIGCHI volunteer community puts hours into the on-the-ground work of generating reports, identifying gaps in policy and suggesting how to address them, and developing methods and documentation for addressing accessibility.

Lastly, a commitment to change may require the courage and outspoken action of activists. Activists may put their professional careers at risk when they raise their voices. Whether they work through protest, organizing, unionization, or other means, their courage helps to start conversations and create momentum for change.

Personally, I am most comfort in the space of concrete action, and to some extent advocacy. But what I have come to realize in recent times is that change rarely happens when only one of these three approaches is in play. Action, advocacy, and activism play off of each other and each helps the other do more. While activism can create momentum, advocacy can turn it into commitment and policy. While policy creates opportunities for change, action is required to implement those changes. While action moves change along, activism helps to tear down barriers that change inevitably bumps up against. For these reasons, I have done my best to support and encourage all of these types of action when I see them.

Not everyone is comfortable with activism, not everyone has time for action, and not everyone has the power or proclivity for advocacy. But it is so important that we each remember to value all of them even when they make us uncomfortable. And that we express gratitude and support to all of the people doing all three types of work. 

Accessibility and Inclusion, Disability, Thoughts

The Value of a Disability Identity

I’ve been reflecting a lot recently on what it means to identify as disabled.

Disability is a social construct in many ways, and the social model of disability argues that structural problems (and social expectations) are a root cause of disability. I would argue also that disability is an individual identity. A disability identity something that has helped me make sense of multiple complicated and difficult situations (but I believe it is relevant even in a simpler situation, disability is not by any means a synonym for difficult). It can provide guidance for things such as self-advocacy, education planning, and the use of assistive technologies.

For example, a disability identity might give someone a way to think about the school or work environment in terms of how it can better meet their needs. Accessible technology is part of the solution, but so are modified exam formats that provide an equal footing in measuring knowledge; or the ability to rest when needed (and to have access to quiet, restful spaces). These and other similar choices can have a big impact on inclusion. Yet we still cannot count on administrators remembering this, and people with disabilities and their allies face many small battles all the time to ensure equity along these fronts. When someone says (as I have heard recently) ‘people should go home to sleep’ or ‘we’ll just test this child using the same method as other children so we can see where they stand’ they are advocating for equality rather than equity, for measuring impairment rather than disability.

A disability identity can also suggest the need for political action. This can include volunteer work, protest, advocacy, and more. It gives people permission to go beyond the status quo, to not accept a situation that excludes them or takes away their control or impacts their safety. Instead, they are empowered to ask why this is happening, and how it can change.

A disability identity can also be a guide in personal action. For example, when I was going up for tenure, I sat down with as many potential letter writers as I could to talk about a very important concept in disability: Disclosure. About half of the people I talked to were surprised we were having a conversation about this because they knew and understood that it was neither legal (in many circumstances) nor appropriate (ever) to disclose my disability in any letter they wrote for me without my permission. About half were surprised that I brought the topic up, or even offended, because they had believed they would be helping me by writing about all that I had overcome on my way to tenure. To be clear, I asked all of them not to disclose, and that should always be the default, unless you have explicit permission to say something.

Relatedly, a disability identity highlights where and how we can improve smaller individual interactions by emphasizing the importance of respect and agency. As such, it suggests

  • The difference between being curious (an important way to understand the world) and questioning whether something is needed/laughing (even good-naturedly) about it (which can be invalidating)    
  • The value of checking in (asking how someone is doing, or if something is ok) rather than assuming (saying that “you seem fine today, that’s great”, for example) or avoiding (talking about someone rather than to them for example)    –
  • The importance of giving space. Sometimes it is better to let someone decide when to talk about things rather than pushing for information or constantly asking.   
  • The importance of trust. It is so important never to accuse someone of using their situation to get something they want. It is also important not to assume someone can’t do something just because they look a certain way or have a certain impairment.
  • The importance of acceptance . Letting someone navigate in their own way and not bombarding them with expectations and questions

A disability identity might also change how we approach a research project. In my class on accessibility this quarter, we have frequently asked the question: How would a disability identity change this project. The answer often lies in the questions we ask of a work. For example, we asked — How does this project increase the agency and control of the person it serves? Who does it include and exclude and in what ways? Were people with disabilities used in the project, or were they partners, or even leaders? Should they be authors of this paper? What happened to them after the project ended?

I want to highlight some differences between these questions and the ones immediately obvious from a social model perspective. That suggests questions such as: How does this work tear down structural barriers that they might be facing? Does this work question the status quo or hold it up? What is the context in which this work was done, and what happened after the project ended? These are also important questions, but they cover different ground.

What has fascinated me when talking about these issues with others is the level to which they can be confusing, confounding, confidence-chilling concepts for people without a disability. If you are uncertain what you can say to someone, or feel attacked when people ask for change, keep in mind that you might be missing important perspective, or that the work of educating others about disability might involve a broad brush that catches you up in it even if you are doing the right thing.

Finally, I’ll note that disability identity can also be empowering. If you have a disability, and have not thought of yourself in those terms, or considered those possibilities, it can be interesting to introspect about them. Ask yourself what a disability identity might give you. It does not need to define you, but it might still be part of you.

Accessibility and Inclusion, Thoughts

Contributing to SIGCHI Accessibility

The AccessSIGCHI community (a group of volunteers that are working together with SIGACCESS to identify and address accessibility concerns across SIGCHI) has put out it’s 2019 report. I’m not going to copy the whole thing over here, especially since it’s already up on Medium but I do want to call out some important things about it.

First, although the report is about AccessSIGCHI’s work, it’s also in a way about accessibility across SIGCHI, since that is the goal we are working toward. And as such, it is incredibly gratifying to see the number of people all across CHI also working to make SIGCHI accessible. There are too many to name here (but we tried to name at least those who took on official accessibility chair roles in the report).

Second, we are making progress– more and more conferences are appointing accessibility chairs, for example. And ACM is moving toward a more accessible publications format (HTML) and thinking about accessibility in the process.

At the same time, accessibility is challenging us all to rise to new levels. Lack of accessibility is analogous to an inequitable tax that some face and others do not. It can cause issues with physical safety, trigger health effects that are non-trivial to cope with, or simply bar someone from participating in their own research community, and all of these have happened to people I know in the last year.

Change often seems incremental, and can be conditioned on not only the knowledge and caring of an accessibility chair, but choices made as far back as selection of and negotiation with a venue and as far out of the control of leadership as a rude push, by a person in power, in line for food.

For these reasons, it is critical that we not only set up goals and guidelines, not only hire expertise, but also work every day to raise awareness, to give a voice to those in our community with disabilities, and to empower them.

Accessibility is a hot topic in CHI research right now. It was one of the top keywords among submissions to CHI 2018 for example. If you are doing accessibility research, which benefits your career, but not accessibility service work, which benefits the careers of people with disabilities, ask yourself if you should change this. If you already volunteer, thank you!We need more volunteers, and we also need more representation and inclusion of people with disabilities in SIGCHI!

While we should not expect people with disabilities to do the service work necessary to improve accessibility, we should empower them to do so. This means giving people with disabilities a chance to be represented among the leadership where they can help to make decisions, address structural inequities, and have power to go with their strong voices. We must cultivate leadership and provide opportunities for people with disabilities. And we should focus those opportunities where they will have the most impact.

Last, while volunteer efforts go a long way, accessibility work sometimes costs money. It makes a big difference when it is possible to hire an expert to review a website, assess legal requirements for site accessibility, or hire a firm to provide captioning services. Budgeting for accessibility from the get-go, or having voices in the room where budgeting decisions are being made, will help to shift the balance from accessibility constantly being a burden to it being a standard.

Accessibility is a wicked problem, as I’ve said before. Even with the best of intentions and a lot of hard work, it is easy to miss something or get it wrong. But if we continue to dialogue about it and work together, I do believe we can make SIGCHI even more accessible. Mistakes will happen, but with dialogue we can learn from them. By working together, we can record them so others can learn too. And in the process we will show all of SIGCHI that they are welcome and respected in our community.