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.

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!