Monumental Reopening

Last night I ventured out to the opera. 

Had I written these words in 2019, this would be the start of an opera review — perhaps a recounting of my bucket list adventure watching La Scala’s production of Tosca under starry summer night skies in Rome, or the haunting production of Jenůfa at the Santa Fe Opera that stays with me still. But COVID cleaved the world in 2020, and none of us is the same.

What has been striking for me in catching up with family and friends is how differently we have experienced this pandemic. I can only speak for myself, but as an educator, education administrator, and deaf bioethicist, the past two years have been the most demanding years of my life, rivaled only by that first year of being widowed with an infant and managing eight different legal actions. I write this not to elicit sympathy, but as a point of comparison. 

I realize that my years of working 100+ hour weeks in the safety and comfort of my home are nothing compared to what those working on the frontlines of medicine and essential service endure. And I know that those who have lost livelihoods and much more are still suffering deeply. This pandemic has spotlit inequities that we already knew existed, and much work is needed to remedy them.

Over the last several months, I’ve been cautiously venturing out since getting vaxxed and boosted. (Aside, my autocorrect keeps changing ‘vaxxed’ to ‘vexed’ – I suppose there’s an irony in that.)

Early in the pandemic, I maintained my equilibrium with little walks in my beloved Barelas, masked and hypervigilant about physical distance spacing. Once we realized that aerosols were the issue, and once my workload eased, I ventured onto the Rio Grande Bosque Trail on my bicycle, mask on but lowered, letting nature work its magic on the stress that had parked itself in my cells. This small shift in activity felt a little like a ‘reopening’ of my love for nature, which had shut down with the stay home order that chained me to Zoom and my computer screen.

An anxious return to DC last summer heralded the joy of being back in the classroom. Yet masks made teaching stressful in a new way, occluding the grammatical markers of ASL and dampening the discussion. Students refused to wear the clear masks they’d been given on the grounds that they were uncomfortable and messed up their skin. As a faculty member, I felt obligated to wear the masks so that my communication was less impeded. The lively discussions of face to face discourse that I had imagined never really materialized. It may have also been the topic — perhaps it was too soon to offer a course called “Pandemic Bioethics” and expect discussion on the limits of liberty and collective public duty vis a vis masking and vaccinating as we were living it.

Back to the opera. 

I knew from the steady stream of emails that the Kennedy Center was checking vaccine status/negative testing status of all ticket holders. I also knew that the age group with the highest rate of vaccination in DC (and also NM) were seniors — a demographic group that has long overlapped with those who go to the opera. I was an age outlier in my early twenties when I discovered this art form (thank you Mills College!), and even at middle age, continue to be an outlier. For perhaps the first time ever, last night I did not lament the lack of age diversity at the opera, but welcomed it.

There’s opera, and there’s contemporary opera.

Most people, upon learning that I, a Deaf woman, am an opera fan, immediately bust loose with a joke about not hearing and opera. (I’ve “heard” them all.) Others remark on traditional opera, with petulant divas, grand ball gowns, and prolonged ariatic deaths – usually by stabbing, sometimes by other means. I’m hardly opposed to traditional opera, but the works that make my heart quicken are contemporary operas — those that take on the heated social issues of our time and work through the complexity in song and simplicity. 

A two hour opera production requires honing the elements of conflict to bone. You might think opera is just junk food for this ethicist’s brain — there’s something enormously satisfying about having the nuances of ethical conflict reduced to big picture synopses — but I aver that it is more than that. Last night’s performances in Written In Stone took on the ethical issues I teach on a regular basis — inequities and discrimination in gender, race, sexual orientation, and class. In each of these performances, all woven around the question of monuments and what they mean to us, there was a carving out of positions and a movement towards (but not concluding in) reconciliation and redemption.

As I sip my coffee this morning, my mind is still filled with what I took in last night, and I shall write and reflect more on this in the coming days. Yet what occupies my thoughts most this morning is a poignant musing. 

You see, I mostly divide my opera budget between the Santa Fe Opera and the Washington National Opera. For decades now, I have attended with a distant ‘companion’ — the inimitable late Supreme Court Justice Ruth Bader Ginsberg. As the years passed, her quiet entrance to her seat in the darkened theater became illuminated with the hearty applause of the audience. The last opera I attended in Santa Fe happened to be one in which RBG attended, and this time she received a standing ovation. 

The late Justice was not in the audience last night, of course, but I like to think that something of her spirit for justice was.  Last night’s production opened with an announcement that two members of the orchestra were Ukrainian born, and followed this with a stirring rendition of the Ukrainian national anthem sung by the Written In Stone lead performers. The audience stood, and though the anthem was unfamiliar to most, the sentiment of solidarity was palpable. 

Later on, in the concluding lines of the one act opera “It All Falls Down”, the words of the majority opinion of the Obergefell v. Hodges Supreme Court case rained down on the audience though song: 

“The nature of injustice is that we may not always see it in our own times. The generations that wrote and ratified the Bill of Rights and the Fourteenth Amendment did not presume to know the extent of freedom in all of its dimensions, and so they entrusted to future generations a charter protecting the right of all persons to enjoy liberty as we learn its meaning. When new insight reveals discord between the Constitution’s central protections and a received legal stricture, a claim to liberty must be addressed.” 576 U.S. (2015)

I dare say this is the first opera I’ve witnessed in my decades of opera-going that directly quotes from a judicial opinion. I wondered how many others in the audience were making the same connection I did, of the absence of one of our city’s most passionate opera buffs and how the threads of this production harkened to her legacy of justice.

I’d be remiss if I didn’t also note the one act opera “Rise”, which tells the story of the Portrait Monument of 1921 of the suffragists Elizabeth Cady Stanton, Susan B. Anthony, and Lucretia Mott. This monument, unveiled in the Capitol rotunda, was moved to the crypt the next day, where it languished sight unseen for 76 years. It took an Act of Congress to bring it back to the public view. I’ve been in the rotunda enough times that I know I’ve seen this monument, but I have now made it a point to really look at it when we are allowed back in the Capitol. This is what good art does, isn’t it? It moves us to a different perspective.

As I began this post with, this isn’t a review of Written In Stone, but rather a reflection — on opera, monuments, and this monumental pandemic that has not yet passed, but may be shifting shape, not unlike those other ‘monuments’ that have been toppling during these times. (I’m not just thinking about those made of stone — I’d include the effects of #MeToo in this mix.) 

Although it wasn’t always so, my life now reeks of privilege and I am made discomfitly aware of this. Philosopher by vocation, poet by avocation, I’ve spent this pandemic drowning in a sea of words — emails, scientific articles, bioethics writing, pandemic novels read to teach, meeting agendas, and bad auto captioning ad infinitum.

And yet I have only just started to think and write about this pandemic in a space once removed from the immediate urgent call to respond as a disability bioethicist. This is something of a first foray of sorts back into the terrain of writing for pleasure, not pandemic — a move that feels terribly indulgent and yet maybe even a little bit necessary for the soul, despite my unease.

Cleaved though we are by what this pandemic has wrought, I hope that each of us can find a thing of beauty — whether art or nature — that gives us the opportunity to pause, building fortitude for our monumental journey through these persistently challenging times.

Part 4*: You’re expensive, but we want you here anyway

As the seasonal time for the annual bioethics meeting approaches, I’m thinking hard about how to make things better. This time, after several less than ideal experiences, I’ve decided to offer my assistance in helping the organization identify local interpreters who would be well suited to this assignment. So I reach out to my fellow deaf academics (the Deaf Academics listserv is a wonderful resource) and get a list of names that I offer to the bioethics organization and the association management company. As has been their pattern, my offer of assistance is ignored. As is now a typical result, I go into the conference not knowing whether I will have real access or the dog-and-pony show variety, where all the hearing nonsigners ooh and ahh over the “beautiful signing” while I grit my teeth.

Here’s the thing that many academic conference organizers and academic/professional organizations are unaware of – the landscape for signed language interpreting agencies is still pretty untamed, and over a decade ago, this was even more true. Agencies in places where there is little regulation of signed language interpreters can sign up pretty much anyone who claims to be an interpreter. The best agencies vet their team members; the worst agencies exploit the lack of regulations and quality control by signing up unqualified people to interpret.

Now add to this mix the issue of competitive bidding for jobs, and I think you can guess where I am going with this. Those agencies that hire competent and qualified interpreters will set their rates to a sum that provides market compensation for qualified professionals; fly by night agencies can underbid and often get the job. This definitely counts as a structural harm inflicted on deaf people, but also on all of the people receiving the interpreted product. It always goes both ways — communication access is not just “delivered to deaf people”, but involves the dynamic process of sending and receiving for deaf and hearing people.

Deaf professionals and deaf academics in a particular city or region of the country learn which agencies are to be trusted and which ones are not. We share this information with each other, as we also share names of interpreters we think might be a good match to our deaf academic colleagues on content and style (more on this in a later post).

Hearing nonsigners do not have easy access to this community knowledge, and they usually don’t even know that it is important knowledge, operating instead on the fungible interpreter model, aka  “If they’re moving their hands, they are interpreting, right?” Unscrupulous agencies take advantage of this, often marketing their services to institutions that require signed language interpreting on a semi-regular basis, whether this is a medical practice or professional organization.

A twist of epistemic injustice is not unusual here, where the nonsigning hearing person assumes because an interpreter or a representative of an interpreting agency is pleasant, professionally dressed, and competent in English, then the agency must be professional and competent. The deaf person’s protestations to the contrary are disregarded.

So here’s a question: given the shortage of qualified signed language interpreters in the nation, and the signing deaf community knowledge of skilled interpreters and the agencies that provide their services, why not first go to those who so have the expertise to assess whether the interpreting product fits their need?

The reality is that signing deaf people who have provided such feedback are often dismissed by the nonsigning hearing person who has hired the interpreter. This dismissal can take the form of “oh, you just want your friend to interpret” or “oh, you’re being a difficult patient/client/customer” to “oh, I’ve done my due diligence and found the agency with the best prices, and you just want a Rolls Royce instead of a Ford”.

So if you are a junior member of a profession, and you know you have to play the long game, you push to the extent that you gauge is to the edge of being deemed a troublemaker, and then you hover around that edge, not daring to take chances with your career. You know that invitations to small conferences, to colloquia, to write a book review, to contribute to an anthology, to join a conference panel – these all hinge on how people perceive you. Are you a team player? A troublemaker? Are you a good kind of ‘diverse’ addition to their panel? (For yes, people are often looking to add diversity to a panel, and if you are under-represented re: gender, ethnicity, and disability, people take note.)

And then you arrive at the bioethics annual meeting, exhausted from all of the tricky calculations and advocacy gamesmanship that you’ve had to play in order to get something that is guaranteed to you by law.

You meet with your interpreters – they are a mixed bunch, and you are greeted by members of the bioethics organization board of trustees. The president pulls you aside, and tells you this: “We’re glad that you are here and that we can provide access.” He pauses. “But you should know that you are the most expensive person here, costing even more than our keynote speaker.”

What’s the right way for a junior member of the field to respond?

I chickened out.

I did not give him a lecture about diversity, equity and inclusion. Instead, I nodded and changed the subject, blinking to keep my tears of righteous indignation from spilling out of my eyes.

The message I got was that I was being seen as a troublemaker, no matter how much I played the game of working with the organization. My time and efforts to assist with quality control and expenses were not viewed as helpful, but problematic.

I was being seen not as someone wanting to help change an unjust system that had been designed from the start to benefit a certain kind of person. I was seen not as a new member with expertise that could make the organization more inclusive of all. No, I was seen as someone whose very presence impacted the organization’s bottom line more than anything else.

This is not a great message to send to a junior member of the profession who is hoping to bring a different (and missing) perspective of deaf bioethics to the mainstream bioethics conversation that is occurring around her.

So I decided to quit the organization. It was clear that I was not welcome – why fight it?

*Some of the details are altered slightly because my aim is to tell the story, not to call out any individuals, especially those who have since made amends. I think we are at a moment of social consciousness where there is more willingness to look at what we have done and where we have been, and to consider what we need to do to make things better.

An Accommodations Saga in 16 Parts: Part 3* (Doublebooking)

After being tailed like a common criminal at the last annual meeting of the bioethics organization, I was nervous about returning to the annual bioethics conference. It is never a good feeling to realize that your actions are being monitored closely, and worse when you realize that the basic level of trust you assume would be given to you as a new-ish member of the academic community does not apply to you.

This is especially true if you are a person whose physical appearance already raises suspicions, and if you have learned the hard way to be docile and overly solicitous after years of having been watched at retail stores because your olive skin and slightly ‘exotic’ appearance, combined with your life-long hard of hearing trait of constantly scanning the room, flags you as potentially something that you are not. Never mind that your scanning behavior is because you know that this is the best way to pick up on spoken language encounters before they turn into something problematic, the reason for this is assumed because of the way you look. Nota bene: a portly white hard of hearing man of middle age with the same scanning behavior will not be watched as a potential shoplifter, but will be approached as a customer. Truth.

(And of course, there is also the skepticism I know I will encounter in even writing this, where my observations may be dismissed or gaslighted by people with lighter skin and more privilege – I write this well aware of the colorism in many communities, and of my own privilege as a light olive-skinned conventionally attractive woman.)

After a lifetime of being on guard, it is easy to feel wary about entering a space where it is already clear that you are viewed as a problem by those in charge.

I had emailed my request for accommodations, and was hopeful that perhaps we could turn over a new leaf, this bioethics organization and the association management company. I was contacted by a staff member and asked to identify which sessions I planned to attend. This is not unusual for organizations that want to handle the interpreting arrangements on their own, and while I was a little annoyed by the request, thinking to myself that hearing members of this organization are not asked to commit to their schedule nearly 2 months in advance, I sent my best guess at the sessions I planned to attend, figuring that once I got there, the assigned interpreters would work with me to follow my conference schedule preferences.

Upon arriving at the conference, I met up with the team of interpreters, and explained to them that the schedule they had received was subject to adjustment. They were fine with this. I was not able to explain this to them earlier, because of the decision by the association management company to keep me in the dark regarding the name of the agency and the interpreters’ full names. I also gave the interpreters a heads up on the experience I’d had the previous year of being followed and the attempt to deduct time from the interpreters’ invoices. These were seasoned interpreters who had been in the field long enough to know the kind of discrimination that gets levied against deaf people – they assured me they would have my back.

There were a few spot checks of association management staff looking into sessions that I had noted I would attend. And there was one incident where I was asked by a staff member why I wasn’t in room X, when I had gone to room Y. I politely explained that I had decided to attend session Y after learning from a colleague that there was a paper being given that was more relevant to one of my current projects. I got scolded for not giving them a heads up, to which I smiled and promised to do better. Remember — junior academic not looking to make waves was my goal.

All was not to go well, however. I showed up at one session where another deaf person was presenting. This was not just any deaf person, but someone whose writings I was quite familiar with – this deaf academic was a star in her field, and she also sat on the Gallaudet University Board of Trustees, the university where I was employed as an instructor on the pre-tenure track. (Upon getting my doctorate, I would be converted to tenure track.)

After her session, I mustered up the courage to introduce myself and to ask a question about her research. She was attentive and curious about my work, and quickly put me at ease. As we wrapped up our conversation, she asked me which session I planned to attend next. I mentioned that I was torn between two – the one I had originally thought to attend, which was the same one she had planned to go to, and another one.

At this, the pair of interpreters looked at one another, and interjected that for the recently concluded session and the next two, there was only one set of interpreters, since the organization had matched our schedules (mind you, without letting us know that another deaf person would be attending and that they would be doubling up on interpreters if our preferred session list overlapped), there would not be interpreters for one of the sessions if we went our separate ways.

I was a junior academic not yet done with graduate school, and mindful that the person with me could quite possibly vote on my tenure someday, depending on how long she served on the board. What do you think I did?

Reader, you guessed it. I deferred to the university trustee. Here’s the plot twist. Because the trustee was (and is) an academic, and not only an academic but a DEAF academic, this trustee quickly assessed the situation and said, “I’ll go to the session you want to attend. This is your professional organization, not mine, and you need access at the sessions that you determine will best help you with your research agenda and networking.” This kindness felt enormous at the time, especially in light of the treatment I had been getting from the bioethics organization leadership and the association management company.

Yet note, had the association management company only communicated in advance that they were combining accommodations for the breakout sessions, this would have been sufficient to avoid this awkward problem in the past. Also note: it will not always be the case that a senior academic will be this generous to a junior one. My experience is that this generosity is more likely to be the case if the senior member has been marginalized in their academic discipline because they have a visceral understanding of what this experience is like.

This situation of power imbalance should not have happened. It could have been avaoided. It is my sense that the staff members of the association management company, which caters more to professional organizations (medicine, law, etc) than academic ones, was unaware of the diciness that their decision could create for a junior academic.

My hope is that all senior academics, those who know this experience of being marginalized and those who do not, upon noting that a junior academic is getting the short end of the stick, will figure out a way to make things better.

Bioethics can and should do better.

*Some of the details are altered slightly because my aim is to tell the story, not to call out any individuals, especially those who have since made amends. I think we are at a moment of social consciousness where there is more willingness to look at what we have done and where we have been, and to consider what we need to do to make things better.

Other parts of the Accommodations Saga can be found here: 1, 2

An Accommodations Saga in 16 Parts: Part 2 (Being Tailed)

After my first year of attending my professional association conference, I realized that I needed to specify to the bioethics organization and the association management company that they ought to provide qualified interpreters. This was not something I had ever encountered before in a professional academic setting, which is part of the reason why I had not done this initially.

Fun fact: the state where the 2004 conference took place actually has a law on the books, Act 57, dealing with the regulation of signed language interpreting. The promulgation of the law was July 2, 2004. This is important because there is no doubt in my mind that professional signed language interpreters and signed language interpreting agencies in that city were familiar with this at the time of the bioethics annual meeting – even though it would not take effect until on or after July 1, 2005. From my years of working with the bioethics organization and the association management company, it is clear to me that they are unfamiliar with the provisions of the state and local laws that apply to the regulation of signed language interpreters. As a public service, I offer this website from the Registry of Interpreters for the Deaf. Please note that it is for informational purposes and does not constitute legal advice.

Once I had requested certified interpreters, I had a few exchanges with the association management company employee who was responsible for accommodations at the bioethics conference. I had some information that I wanted to share with the interpreters beforehand (I have a document “Interpreting for Teresa Blankmeyer Burke” that I’ve amended over the years to give interpreters some background on me and my language and interpreting preferences). I was not given the name of the interpreting agency, which I thought was odd, especially since I was in Washington DC, where I worked at Gallaudet University.

I have written about this elsewhere, but this act of withholding information from deaf professionals (or really, from any deaf individuals) about their interpreting services is unethical in my view. (Did I mention that this was a bioethics organization?) In addition to not being told the name of the agency, I was also not given any information about the interpreters except their first names, and I was told that I should go through the association management company to communicate with the agency and the interpreters prior to the event, and that I should communicate in writing.

This was in stark contrast to all of my other experiences working with academic interpreters in university settings where I was given the name of the interpreting agency, and often communicated with the interpreters directly about the assignment so that they could be well prepared. This communication is not only about the content of the presentations, but covers the entirety of the conference, including pertinent information about appointments with colleagues, journal editors or academic publishers and their representatives. Sometimes this content is sensitive, and the idea that such information would go through the association management company and the interpreting agency was troubling. (Not all who work for interpreting agencies are bound to a code of ethics, as certified interpreters are.)

When I showed up to the conference, I was relieved to discover that the interpreters were qualified to interpret philosophical bioethics. I went about my business, attending sessions, chatting with colleagues, and networking with people working in my research areas. I was having a great time, until one of my interpreters awkwardly mentioned to me that I was being followed. When I asked him to elaborate, he mentioned that a staff member was following me and writing something down. This puzzled me, and it wasn’t until a few weeks after the conference that I learned what was going on.

It seems that the staff member had been assigned to take notes of when I was speaking and speechreading and “not using the interpreter”. The sum of this time was tallied, and when the interpreters submitted their invoices, the number of minutes that I had used for spoken communication was deducted from the time they had submitted. When I learned about this from the interpreters, I was embarrassed (this was my professional organization?!) and appalled.

Disability often occurs along a spectrum. (I know that disability is a fraught term in Deaf/deaf circles, but please bear with me on this usage for this purpose.) The idea of disability that many people hold without consideration is that accommodations are always necessary, and if one isn’t using the accommodations provided, then the disabled person must be faking it. The “disability con” if you will. The fear of being considered a fraud is real — see this Washington Post piece by Rebecca Cokley, Director of the Disability Justice Initiative for more background on the harms of stigma and social shaming.

What isn’t well understood is that people have variable needs and reserves – sometimes a person can accomplish a task without additional accommodations, but the investment of energy involved may take away their ability to do other things. For example, I can, in some settings, with the right people, speechread and speak. This is exhausting, and if I do this, the reserves that are left for other activities are depleted. Now think about attending a conference and how fatiguing that is even if you are not speechreading or paying attention to the shape of your lips as you say certain words to be sure they are pronounced clearly.

What I can do in a two hour conversation with my closest family members cannot be replicated at a conference that goes on for 3.5 days from early morning to late at night. I can participate more equally if I have access to interpreters, and I can participate in the entire event. This would be impossible for me to do via speechreading — the cognitive load and reserves just aren’t manageable under these conditions.

The assumption on the part of the association management company regarding my interpreting accommodation and my need for this was mistaken, misguided, and most of all, offensive. I very clearly got the message that I was not welcome because I was expensive and untrustworthy.

I hope you’ll agree with me that this is a hell of a message for an academic organization to send to a junior member of the profession just starting out.

To read the first part of the Accommodations Saga, go here: 1

An Accommodations Saga in 16 Parts: Part 1 (Unqualified interpreters)

When it comes to some professional goals, I have played the long game, including accommodations requests for a major organization in my field of bioethics. By long game, I mean over 16 years of aggravation, fury, and tears. I am a patient person, and I knew that to be labelled a troublemaker early on could have disastrous effects on my career. Perhaps it still might, but at this point I’m in a very different place in my career, having recently been appointed Full Professor at Gallaudet University, serving in various leadership capacities at my university and elsewhere, and working as a co-editor of the Journal of Philosophy of Disability (a new journal in the field of philosophy). My expertise in my subject areas of bioethics, philosophy of disability, and interpreting ethics fields has been recognized by national and local media, state and national governments, and international bodies (including the United Nations). I’m willing to take this gamble of being labelled as a troublemaker.

Besides, for years I have been telling myself that once I became full professor (top rank in my field for you non-academics) that I had an obligation to tell this story. It is my hope that by doing so, other deaf and hard of hearing academics may benefit.

It started in 2004 in Philadelphia. The association managment company hired by the bioethics organization responded to my request of ASL interpreting accommodations by providing an interpreter suggested by a family member of an employee. Upon meeting this interpreter, she informed me (in spoken English, not in ASL) that she interpreted at her church; later she told me she had learned ASL from a book. Her church was not a deaf church, nor was it a church with a significant number of deaf congregants. In case you were wondering, someone with this background is not an appropriate fit to the assignment of a professional academic bioethics conference. Interpreters, like teachers and lawyers and doctors and pretty much any profession, have areas of expertise. At minimum, a suitable interpreter for such an assignment would have expertise in higher education interpreting at the graduate level, and familiarity with medical and legal terminology.

The church “interpreter” was paired with an educational aide who worked with deaf kindergartners, and who moonlighted as an interpreter once in a while. This interpreter was also paired with another interpreter (certified) who had a lot more savvy about the profession of signed language interpreting. To her credit, the educational interpreter immediately assessed the situation at the opening plenary, she informed me within the first hour of working with me that she was not qualified to interpret for this event. She explained that she had been told this was an educational interpreting assignment, and given the information that this was a bioethics conference that used technical terminology from law, medicine and philosophy. The certified interpreter was an incredible ally.** She worked for hours to find more qualified interpreters and by the end of the day, and for the rest of the conference, these interpreters were in place.

While the educational interpreter apologized profusely to me for her mistake in accepting the assignment, I was never offered an apology for the mismanagement of my accommodations request, in person or in writing by either the bioethics organization or the association management company. Rather, the response of the association management (nonsigning) staff was to challenge my assessment of the interpreting quality. (As you shall see, this is a pattern that continues to this day in 2020.) By my lights, this is not a way “to ensure stakeholders feel valued, heard, and understood” — a quote taken directly from this management company’s Diversity, Equity and Inclusion webpage. Though to be fair, this may be a more recent aspiration.

This was a colossal disappointment for me, given that this was my first time as a graduate student to attend a professional conference in bioethics, my chosen field. I was nervous about showing up as a deaf bioethicist with interpreters in tow. The fields of bioethics and disability studies have not always played well together, to put it mildly. I had been looking forward to seeing people in the flesh who were up to that point only names in print on academic journals. I was eager to learn about what was up and coming in the field, and most of all, I wanted to participate in discussions about bioethics, confidently secure that I understood correctly with access to the content. (Lipreading is an inexact science and bearded academics don’t make this any easier.) The plan was to cap off this first foray into academic bioethics by hanging out with my closest friend from grad school, catching up on our lives as we celebrated our recent birthdays.

Our celebration at the White Dog Cafe* was fun and memorable, yet it unfortunately included some expressions of frustration on my part re: accommodations. This was not so unlike what we’d done in graduate school, but it shouldn’t have been this way. My request for accommodations was made in 2004 — some 14 years after the Americans with Disabilities Act had come into being in 1990. It is due to the efforts of friends like this that I did not completely despair, but dug in with resolve to make things change and to play the long game. (I’m not naming you, but you know who you are!)

Stay tuned for the next installment to find out what happened in 2005.

*Corrected name, thanks to Christian.

Edited to catch/fix typos.

**Additional edit made to clarify the interpreting situation — the certified interpreter above got in touch with me. Massive thanks to you again. I’m so glad to be able to thank you “in person” (virtually) so many years later! Your quick and decisive action made an incredible difference.

Spring Chill, Summer Thaw, Autumn Harvest

Last winter just a few days before the vernal equinox, I was enjoying being home in Albuquerque when I learned that a right-leaning blog across the pond had picked up a blog post I had written about genetics and the potential impact on the signing deaf community. (Note to self: getting a text from a high-level university administrator during Spring Break is best avoided.)

The post had been translated into ASL on a deaf community internet news site, and I knew that it was getting some attention in the signing community. As an academic, I was delighted that lively conversations were happening about gene editing in the deaf community. Also as an academic, I expect (and hope) that not everyone will agree with me. Part of the joy of being a member of the academy is partaking in thoughtful disagreement, and if that exchange sharpens my arguments, that’s all the better.

The conservative critique of my blog post spread to several sites, many of these located in the alt-right sphere. Once I realized that the “critique” (I use this phrase lightly) was much more sensationalized than thoughtful, frequently making points against straw men instead of what I had actually argued myself, I stopped looking at the blogs and news sites. Per my usual practice, I didn’t bother to read the comments. I did look to see what other academics wrote in response (mostly on social media), and in several cases, responded to their thoughtful critique via email or private message.

Perhaps I was naive, but I wasn’t prepared for emails threatening my person and well-being. These shook me up, especially those containing specific personal information that indicated the writer had taken the time to do some research. I followed the advice I’d been given by colleagues who had found themselves in similar circumstances. Keep everything. Tell campus security. Inform your local law enforcement. Being that I live in the ‘hood, I also told my neighbors what was up. I have fiercely protective neighbors who pay close attention when something out of the ordinary is happening. This is mildly annoying when someone I’m dating comes to my home and my neighbors grill me about it the next day, but the tradeoff of community is worth it. My neighbors know that I am deaf, and we have a number of different ways to get in touch and check in on one another given our various languages and language modalities.

After I returned to DC the next week, where I was living in temporary quarters for the semester, I felt a little safer. When I came back to Albuquerque at the end of the term, I was stunned to realize that this experience had thrown up a writer’s block for me like nothing before. I was embarrassed to discover that emails from people (most likely individuals living far from my either of my home cities) had generated such a chilling effect on my speech, and I simmered for weeks with self-directed anger that I had responded in precisely the way that these writers had probably intended I would. I don’t think of myself as someone who backs down from a confrontation; my life history arcs toward pressing for justice.

But this was different.

This wasn’t a matter of going up against an institution or organization that was violating the law by refusing to provide disability accommodations. Institutions and organizations may indirectly threaten my well-being by making it harder for me to do my job, and in my pre-tenure days, I was almost always worried about how my persistence would reflect on me.

Would I be perceived as a troublemaker? Would I be viewed as too expensive? Would I be passed over for opportunities due to the work involved in arranging for my accommodations?

I’m happy to report that now that I’m on the other side of tenure, these worries have subsided. That said, I recognize that I am one of the lucky ones, and that there are many colleagues with disabilities who are unemployed, precariously employed, or navigating the tenure process. And there are also others with tenure who worry about the impact of disability disclosure on the trajectory of a career.

This summer, I discovered that anonymous threats to one’s person or property are much harder for me psychologically than refusals to provide accommodations. I’ve been harassed online previously by people who weren’t anonymous, yet these things have a way of playing out over time, especially when one has incontrovertible evidence against their claims, such as (for example) having proof that signed language interpretation was provided at a diversity conference one attended, despite accusations to the contrary by someone not in attendance. But not knowing where threats are coming from is far more unsettling. Fortunately, I finally did get to a point where I could write again, although I’ve been reluctant to put any of my work out for public consumption these past several weeks.

But here it is, the end of the summer, and everything is due or (over)due, so my hibernation is over. It took me dozens of miles of hiking throughout the southwest for me to reach my conclusion, plus several nights of solo sleeping under the stars for me to put this in perspective. I needed a little time and space to reflect about this experience, and I’ve decided that I’m not willing to be the kind of academic who stops writing for the public when she’s threatened with bodily harm.

Besides, there’s a big debate ramping up about human gene editing and disability — something I’ve been writing and thinking about for over a decade now (see my 2011 University of New Mexico dissertation, The Quest for a Deaf Child: Ethics and Genetics), and I have a few things I want to say about a community I love — threats be damned.

 

 

 

 

How (Not!) To Be Inclusive: Deaf Academic version

 

a) Ask the deaf academic if she is willing to write a grant to cover the cost of her interpreters or CART captioning.

b) Return the deaf academic’s conference registration fees, telling her that she cannot come to your conference because her interpreters are too expensive.

c) Tell the deaf academic that she is welcome to attend and bring her own interpreters/CART captioning, and you won’t charge them registration fees (but she’ll have to pay for their services).

d) Tell the deaf academic that she is welcome to attend and bring her own interpreters/CART captioning, and you will only charge them half-cost registration fees (but she’ll have to pay for their services).

e) Tell the deaf academic (who is a graduate student) that she is welcome, and provide accommodations as requested. Upon her arrival greet her warmly, taking her aside to let her know that she is the most expensive person attending the conference, costing even more than the keynote speaker.

f) Cover the cost of the accommodations, but at your next organization board meeting, title an agenda item “the interpreter problem”. Minutes from this meeting will include the following suggestion from a lawyer on the board: hold an essay writing competition that will be judged by a subset of the board, with the best essays getting the prize of accommodations to the next conference.

(g) Tell the deaf academic (an assistant professor of philosophy) that she should meet the organization halfway, and pitch in expenses, just as you do when you upgrade your flight to business class from coach. Ignore that as a Professor of Medicine with a private practice, the cost to upgrade to business class is negligible for you, and the cost of accommodations for the conference is equivalent to two months take-home salary for the philosophy professor.

h) Welcome the deaf academic to the conference, and then, at the disability task force meeting, yell at the deaf academic for not using her CART captioning because she arrived late to the conference due to a delayed flight.

i) Provide interpreters to the conference, but have a staff member follow the deaf academic to make sure that she is using the interpreters for each session of the conference. If the deaf person decides to speechread a colleague and talk to them without accommodation (though the interpreters are standing by at the ready) be sure to note this when the interpreters bill the organization.

j) Provide interpreters to the academic organization professional meeting, but chastise the deaf academic when she uses her time during the annual meeting to talk to professional colleagues and meet with them to discuss their mutual projects. Claim that the definition of the annual meeting is restricted only to providing access during official sessions, and does not include conversations in the hallway or at receptions.

k) Grudgingly agree to provide interpreters for the conference, but tell the deaf academic that if any sessions run overtime, the deaf academic is responsible for paying the overage costs. Get extremely defensive after receiving a letter about the illegality of this from the National Association of the Deaf Law Center (that was cc’d to board members) and say that’s not what you meant at all, thus scapegoating the deaf academic once again.

l) Refuse to pay for the interpreters after you have invited the deaf academic to give a talk.

m) Refuse to pay for the interpreters after the deaf academic has given the talk.

n) Talk to members of your department about changing your open-to-the-public colloquia open to the department only, so that the deaf academic from another university who sometimes attends your colloquia is excluded, and your department doesn’t have to pay for accommodations.

o) Pay for the colloquium interpreting, but deny the request for the interpreters to interpret the group dinner afterwards. Disinvite the deaf academic from the dinner. Gaslight her by telling her that the dinner invitation was mistakenly made and only meant for members of the department. Look unembarrassed when you are all at a gathering the next day and the other non-department members attending the talk reference the dinner conversation, making it plain that this was not a department-only event, but a hearing people only event.

p) Restrict the deaf academic’s communication access to only the session of the conference that she is presenting, saying that this is all your budget will permit. Tell her she’s welcome to attend the whole conference, nonetheless.

q) Tell the deaf academic (a graduate student) that she will not get an honorarium for her talk because you will use the funds to pay for her interpreters instead. Do this after she has booked her travel and is counting on the honorarium to cover those costs.

r) Agree to provide interpreters, but use a staff member’s church network to find someone who “knows ASL”. Book that uncertified, untrained, and unqualified person for a sophisticated academic conference demanding topnotch skills, then claim that you followed the law by providing an “interpreter.”

s) Ask the interpreter out for drinks while she is interpreting. Refuse to accept ‘no’ for an answer. Refuse to acknowledge the deaf academic while you are doing this. Better yet, tell her to go away because you have something private to discuss with the interpreter.

t) If you are the spouse of a person giving a colloquium talk, complain to the deaf academic afterwards that the interpreter was distracting people from the important points of your spouse’s paper. Tell the deaf person that she should tell her interpreter to sit down, and suggest that maybe the university should stop providing interpreters, given the visual distraction.

u) Ignore the deaf academic’s request to contact the interpreting agency that provides local interpreters who know her academic discipline and the technical terms of discourse. Instead, hire the cheapest agency in town, providing unqualified interpreters for non-signers to gawk at, but no access for the deaf academic.

v) Ignore the deaf academic’s expert knowledge grounding her objection that the interpreters provided were unqualified for the assignment. Respond by saying, “They were moving their hands weren’t they? They looked like they were working hard to me!”

w) As a conference attendee, tell the deaf academic that the inept and unqualified interpreter working the conference is doing an amazing job.

x) Remind the deaf academic in each email how much her accommodations are costing the organization.

y) Provide accommodations for the official events of the program, but none of the social events. In feedback after the event, note to the deaf academic that other people attending the event were disappointed that she did not join them for the social events, underscoring the expectation to be collegial.

z) Tell the deaf academic that she will not get the honorarium all other workshop participants received since hers was used towards the cost of her interpreters.

Time, Speedviewing, and Deaf Academics

This post is dedicated to all Deaf and disabled academics who fight the struggle of time.

Back when I was a graduate student, a deaf professor remarked to me, “It isn’t being deaf that’s the issue, it is all the time that it takes!” After several weeks of working on interpreter arrangements for a series of talks I’m giving in the near future, the truth of this hits home once again.

In the midst of my current time crunch, I have received several emails that have English and ASL versions. While my preference is always to get the message in the initial language delivered, when that is ASL, I find myself turning to the English for expedience. Some of this is because English is my first language, but it also is because I am a very fast reader, and can read an English text in a fraction of the amount of time that I use watching an ASL video text.

The reasons for this may not just be related to my native facility with English and my non-native facility with ASL. I can do this in other languages (German and Spanish) though not as rapidly, and not as well, but far faster than I can process ASL video text. So it seems to me that this may be a matter of modality, rather than language. Perhaps if I were fluent in one of the sign-writing systems, this time differential would disappear.

My friends who are born blind and use Kurzweil (or similar) text to speech readers have the ability to speed the reader up and process speech at a much faster rate than natural conversational rhythms (about 120-150 words per minute). Television and radio commerce pick up this pace to 160-180 wpm; auctioneers rattle off their patter at around 250 wpm. For someone like me, who struggles to speechread nervous philosophers reading papers full of syntactically complex sentences at (I’m guessing) somewhere upwards of 180 wpm, these comprehension feats seem like super powers.

Then again, I’m perhaps too easy to impress — upon getting my current hearing aids last summer, which have the ability to communicate with each other and thus allow me to determine the direction of sound for the first time in my life, I felt as though I’d gained a super power, or at least, I did for a few seconds, until I realized that this fell right into species typicality.

I don’t know whether my born deaf or ASL native friends are able to speedview ASL videos and process these at a rate similar to what skilled speedreaders can do, closing the gap between the time it takes to rapidly process written English against rapidly processing ASL. I suspect that the features of ASL videotext work against this.

Consider: with written English (or any language) one can view a page of text at once. That’s a big chunk of information. Now, contrast that with a sped-up video. It seems to me that at some point, speeding up the video results in a deterioration of signal (whether auditory or visual), and consequently, impacts comprehension. (I know this is a matter of empirical data, so perhaps someone can point me to some resources here — I’m capable of googling, of course, but don’t have the background to assess the *best* work in the area, and am skeptical of using H indices and the like as proxy.)

Modality matters, in more ways than one, for the Deaf academic. And, I suspect, also for other disabled academics who are not accessing written text visually.

I’m not sure how this impacts the writing system of Braille. I know that Braille uses shortcuts that enable the reader to read faster, but I wonder whether this may point out not just the difference of modality, but of perception in conjunction with modality. It may be the case that readers of visual written language have an advantage over readers of tactile written language, since the eye may be able to take in and process more rapidly than the fingers. I am thinking here of the ability, once again, of the eye to take in chunks of information, and what I assume are the constraints of the space available on the fingertips to take in information at a similar rate. It seems (and again, I’m ignorant) that the very motion of running one’s fingers horizontally against text would be less expedient.

I’m a speedy reader; always have been. (It’s a family trait that goes back at least 5 generations back that I can tell.) I have used speed reading as a disability accommodation strategy since I was a kid in elementary school before I had the label to put on it. At the beginning of the school year, I would read through all of my textbooks during the first week or so, then would use that information as scaffolding for retrieving more information. At that time, in the pre-internet days, this meant checking out library books on those subjects. Read faster, read more, was how this hard of hearing kid stayed on top of things. Lucky me, to have a librarian mom who could appeal to other librarians to bend the rules of book checkout limits.

This strategy worked very well for classwork; horribly for popular culture.

As part of my hard of hearing kid social strategy, I became a voracious reader of the newspapers that came into our home, skipping the business section for the arts and culture section. The problem was that other 4th graders weren’t reading Robert Hilburn’s views on music in the Los Angeles Times, but listening to Dr. Demento on KMET. Most of them also didn’t have parents who played Respighi and Tjader; as the oldest child, I didn’t have the benefit of siblings to cue me in to this uncoolness. (I’m still paying that price, but in the academy this ignorance becomes cachet of a sort.)

 

*****

The point I started with was about the limited resource of time that constrains Deaf and disabled academics in unique ways in the academy. Some of us figure out strategies that allow us to compensate for the time-suck of disability advocacy in the academy, not all of which can be addressed by universal accommodations, although some can, including advocating the practice of placing interpreters everywhere one might be needed. Yet, this disregards something very important about interpreters and deaf academics. (Let me note that I have yet to see a Deaf academic advocating for this practice — we know all too well the potential impact of such a practice on our careers.)

I cannot imagine outsourcing interpreter selection to a disability support staff person who knows nothing about the content or norms of academic philosophy, and cannot understand why this would be a better system. Contrary to popular opinion, even highly skilled ASL-English interpreters are not fungible. (There are lots of reasons why this is the case that I cannot go into right now.) This and other misconceptions about signed language interpreting are what drive my current research leave project — a monograph on signed language interpreting ethics that also dips into epistemology and ontology. So at some point in the future, you’ll have the opportunity to learn my views.

Note: for blog readers in Deaf Studies and Deaf Education, the lack of a plural in ‘epistemology’ and ‘ontology’ is *quite* deliberate, and signals to philosophers my analytic training. It doesn’t mean that I am unfamiliar with the discussion of the terms used in plural. Nor does my analytic background mean that I am hostile to pluralism in philosophy. 🙂

I recognize that all academics make choices that determine how our time is used, but my point here is about the system advantage accrued to non-disabled academics. These people are advantaged by current systems and structures in academia — this impacts those of us who are disadvantaged because we are measured on their yardstick of time consumption, not ours.

When women faculty started entering the academy in larger numbers, they challenged the time penalty of the tenure clock for women faculty who bore children during the tenure track years. The constraints of the biological time clock exacerbated this problem. Some institutions responded to this temporal inequity by offering parental leave and the option to stop the tenure clock. Many still do not.

Disabled academics don’t have a big life event like childbirth to mark the temporal impact of disability on our academic careers. The multi-vocality of disability doesn’t help, either, nor does the highly variable nature of the time expended. So this is a harder problem to address that doesn’t come with an easy solution.

As an illustration, a few years ago I gave talks at two universities in the same town — one was a state school with a limited budget, the other an Ivy League school with an annual budget exceeding that of many countries. Interpreter expenses for each talk came to about $180.00, which included prep time prior to my talk.

Now, the time involved for me in locating and vetting (domestic) interpreters is pretty similar across the board — some locales may take me a few hours more because I’m less familiar with the interpreting community, but I can usually predict how much time to set aside for that. What I cannot predict is how much time to spend on dealing with the universities or other academic organizations. In the case of the two universities mentioned above, one took 3 emails to resolve (my detailed request, university response and confirmation, then my response) and the other took close to 200 emails. Contrary to what you might think, the wealthy university was obstructionist; the impoverished state university, expedient.

Now, consider not just the time involved in emailing, but the research involved in getting information about the institutional budget and institutional structure; looking for allies, including other deaf academics who had worked with this institution; looking up institutional policies and law (state and federal); plus consulting with lawyer friends and academic friends about what to do.

Consider the lost hours of research time that a R1 university inflicted on my career. Now multiply that by countless other instances. It is far more common to accumulate a count of double digit emails in disability accommodations discourse than it is single digits; triple digits are not that unusual, and occur more in my experience than single digit rounds.

Consider also that I have written documents that detail, in one single-spaced page, my interpreting needs as a deaf philosopher, and the time that it took to craft this document — a timesaver now, but it only saves me time in locating the right interpreters, not in fighting the institutional bureaucracy over whether it is obligated to pay, and if so, which budgetary unit should pay.

Consider also that I was untenured, the Ivy invitation was a feather in my cap and would signal to the tenure and promotion committee that my work was valued outside of my own institution, and that filing, or even threatening to file a Department of Justice claim against the institution could damage my career and reputation, possibly irreparably.

Disabled and Deaf academics who agitate against injustice injudiciously don’t get tenure.

 

*****

In one regard, I am very lucky.

My academic appointment is at an institution, Gallaudet University, that has a critical mass of Deaf academics, probably the largest concentration of such anywhere. It is a place where all of my Deaf faculty peers, and many of my Hearing faculty peers, as well as our academic administration, know the impact of disability advocacy accommodation time on deaf academics, and especially on Deaf solitaire academics, who are sometimes the only signing deaf academic in their discipline in the world.

Midway through my tenure years, as I grew more frustrated by the impact of building infrastructure in my discipline as a Deaf solitaire on my research time, I successfully argued to my administration and my department that the work I was doing to educate my professional peers (and their institutions) about their legal obligations was a necessary condition to my participation in the research activities that were required for my tenure. I argued that my time spent on these activities (e.g. the toll of 200 emails when three would have sufficed), should count as part of my research output. I also successfully argued that in cases where I could not participate because of time running out due to institutional obstruction (not my institution, but other universities and conference organizers), that my institution should pick up the tab of my interpreters so that I could participate and not be penalized due to my status as a signing Deaf academic, even though the primary responsibility to provide accommodations rested with the institution hosting the event, not Gallaudet University.

And yes, figuring out what the problem was, and how to articulate it also took up time. Just in case I wasn’t successful, I also made sure that I would exceed the research activity metrics using the yardstick set by my institution based on Hearing academic norms.

Back to time and Deaf academics…

In this age of analytics and metrics and the evidence-based university, we can point to some things (like the number of emails) as a measure of the impact on the Deaf or disabled academic’s time. We can, if the evidence exists, also point to the difference in the time spent on accessing information (the currency of our realm), whether it be the ability to take in chunks visual information more rapidly than other modes or the inaccessibility of written text for people with print disabilities or the lack of captioning on videos for us and our students. (Auto-captioning doesn’t cut it.)

We can look at the norms of the academy and the standards for tenure, which are predicated on the able-bodied, Hearing academic — not so unlike the tenure path before the notion of stopping the tenure clock for first maternity, then parental leave, arose. And then we can ask ourselves why it is that Deaf and disabled academics are so few in our academies.

Why, indeed?

 

I began my post with a dedication;  I would be remiss if I didn’t end with an acknowledgment of thanks to the dozens of academics Deaf, disabled and Hearing, who have supported the hidden labor of Deaf and disabled academics everywhere. Thank you!

 

Updated to fix a mess of typos. I think I got them all?

 

 

 

Motions of Grief (Memoir)

It has been a long time since I’ve worked on my memoir. The pursuit of tenure and promotion, and a bit of a health crisis swerve last September threw me off track. I’m finally feeling like writing again, and put these words down today. I’d say “happy reading”, but it’s hardly happy going. Best approached as a reflection of sorts about groping for the uncommon role of widowed new mother — there’s no etiquette book advice on how to combine these roles. As you’ll read, I flubbed the conflation rather badly! (Also, each time I tried to put this in the first person, I hit a road block, so for now it’s a step removed. I think that’s telling in itself…)

She tells everybody he died, but only when they ask about her son’s father.

Most people just assume she is the nanny, acknowledging the impossibility of the boy’s tow-headedness against the mother’s Mediterranean coloring; others see the mother’s smile in the son’s.

She stops telling people about being a widow after an experience on a small propeller plane ride to Cody, Wyoming on Christmas Day. Her four-month old son is squirming in her arms, and she nurses him through the take-off. The man sitting next to her avoids looking at her baby, suckling with loud gasps and coos, until the boy is fast asleep and she has refastened the clip of her nursing bra, one-handed, under her blouse. At that time, the man, noting the wedding ring on her left hand, says, “Are you flying to see grandma?”

She replies, “No, we’re headed to see grandpa.”

The man asks, “Did Daddy have to work on Christmas?”

She speaks bluntly, without thinking, “No, Daddy’s dead.”

It isn’t until she sees the man’s stunned look that she realizes she has committed a social faux pas of sorts. Death should be spoken of in euphemisms, and hushed tones, and with an expression she hasn’t mastered yet. One should look away and down, and perhaps falter over the words, as though they are hard to believe. Baldly stating her widowhood in the same tone as she expressed her preference for pretzels over peanuts to the flight attendant is a social misstep that she, great-granddaughter of the society editor of the Orange Daily News, should have known to avoid.

By the time she realizes what she has said, the man has recovered and composed his features back into that neutral mask that men cultivate and master in adolescence. He expresses his condolences, and asks, “How did he die?”

She has told this story so many times that it has frozen into a fable. There is the setting (ironically, near Death Valley), and the characters, the explosion, and the mystery. She tells it with little grief, reciting the details of the dining room hutch that holds artifacts from their gold mine instead of fine china, the gully (never an arroyo), the use of black powder as the technical name for an explosive, and not simply a description or appearance.

She recites the fate of the two survivors, and then waits. What comes next is the pedestal-ization of bravery. Young widows are sad and silently heroic. She feels neither of these, but simply numb. A baby needs to be fed and diapered and held.

These are the motions of grief.

A Quiet Rainy Night at 7th and H NW

Heading into work yesterday, I reached up to adjust my glasses and my fingertips came away wet. I hadn’t noticed until then that tears were spilling out of my eyes. Hours before that, I had posted an article and photograph to my Facebook wall showing Eric Garner in a chokehold.

I cried as I wrote the image description to provide access to my blind friends. Writing the description somehow made it seem even more heartwrenching, as if that were possible.

I cried as I shampooed my hair during my morning shower.

I skipped putting on my cruelty-free mascara for the third day in a row. (I knew it would be washed away before noon, as it had earlier in the week when I did apply it.)

I cried as I drove to the Metro parking garage, and surreptitiously wiped my eyes while seated on the subway train.

It’s been that kind of week — a week starting with numbness, moving into sadness, and coalescing into rage: carefully calibrated, righteously indignant rage.

I’ve been watching friends and colleagues articulate their shock and anger about the recent grand jury decisions on Facebook and Twitter, and noticing something I cannot yet name unfold as friends and family who are politically to the right of me expressed their outrage about Eric Garner’s death. It is too early to say, but I wonder if this is the beginning of a sea change in awareness taking place.

I am cautiously hopeful. But I am also realistic about the glacial pace of real social change.

I’m composing this in the Starbucks café at the corner of H Street and 7^th Street in Washington DC; this intersection has been the site of protests for the past few days. When I arrived at dusk, there were a few police cars and several uniformed officers strategically placed on street corners.

I walked here in the rain from Union Station, where a staged die-in took place in the lobby earlier today.

For days I have been trying to figure out what I want to say, and not succeeding at putting together anything more than a fragmented series of thoughts from the past week.

I am not alone. I have noticed the absence of social commentary from others who live with the daily reality of the impact of racial profiling on themselves and their family members. I have wondered if the reason for their silence mirrors my own.

I did find some words as I lectured to my students in their final class of the term about the role of the state and death (this has been a theme throughout the course), pulling together bits about the bystander effect, Elizabeth Anderson’s The Imperative of Integration, Eric Garner, Mike Brown, and Amadou Diallo. My students responded vividly and with passion. I’m so grateful for them.

That night I walked to the Metro with a colleague. As we walked, we spoke (in ASL) about the events of the past weeks, including local protests by DC area students and the silence about this issue on our campus, which we both agreed was not a silence borne of apathy, but of pain. That recognition helped me to understand why I was having such a difficult time putting words together.

Acknowledging this issue publicly means facing something that I normally keep locked away: the pain of watching people you love be racially profiled and the fear of the consequences that might follow.

When you are part of a racially and ethnically diverse family this becomes part of the fabric of your everyday life. Compartmentalization helps you function.

But I still haven’t figured out how to respond.

What does one say in response to watching people you love experience humiliation and frustration and fear as the police aggressively question them in front of your children?

How can one ever be prepared to explain to your children that the reason you were pulled over at police gunpoint one night during your family summer vacation by more than half a dozen police officers was because of race and ethnicity?

What is the right way to respond when the police separate parents from their light-skinned child to question him in the small town restaurant where you are dining with your family, just to be sure you are not kidnapping him?

How does one describe, let alone live with, the visceral fear of worrying that the much delayed return home from work of your family member – who is so prompt you could set your clock by him – could mean that he is never ever coming home?

I still don’t know what to say or how to say it, but I do know that I start with this:

Black lives matter.