Wednesday, 15 February 2017

Disability in the Graduate Assistant's Contract

Written by Alyssa Hillary
We have kindly been given permission to repost this from:

Two years ago, I suggested to my graduate assistants union that disability and accommodations should be covered in our contracts.
I could understand why it hadn't been there before: 
  1. It's not the sort of thing most people automatically think of unless they are themselves D/disabled or have a disability. 
  2. The accommodations/access side is theoretically covered by laws like the Americans With Disabilities Act anyways.
But for a few reasons, I thought it needed to be there:
  1. Enforcing the ADA is really hard for most people, because it involves filing a lawsuit with the department of justice. Yes, even the threat of a lawsuit can be effective at times, but it generally needs to be at least a semi-credible threat.
  2. If it's in the contract, then violations can also be handled by having the union go to bat, such as by filing a grievance. That's got more force than showing up in an office and complaining alone, but is generally easier to accomplish than filing a lawsuit. This is important because many professors do refuse to ensure access for students, and many departments do actively exclude disabled faculty members.
  3. Attitudes: If following relevant disability laws is explicitly stated in the contract, even if it is a bit redundant (and as an engineer, I like certain kinds of redundancy, including this particular kind) tells people that there's a group on campus that cares about the disability side of things, beyond just disability services (who don't negotiate the graduate assistant contracts). There being such a group is a whole lot more welcoming for folks who find disability issues relevant than there not being any groups like that is!
And one more reason that occurs to me now but I didn't think of at the time:
  • Graduate assistants are both students and staff. Students handle accommodations through Disability Services for Students. Faculty and staff handle accommodations through Human Resources. Where do graduate assistants go, since we're both? That being unclear would be a barrier for anyone who has issues with bureaucracy. So would an answer of "Do both, haha," because that means dealing with two different offices for one issue.
Well. The executive board for the union agreed, and none of the union members objected. They pushed to get disability language into the contract, beyond the list of thing they're not supposed to discriminate against us for. (And disability definitely belongs on that list.)

Contract negotiations happened. While the university negotiators tend not to like adding information that's already in other places to the contract or even referencing those other places in the contract, they did add a line about disability accommodations.
4.5 Disability Accommodations– The Administration and GAU shall adhere to Federal and State laws and regulations as they apply to treatment and accommodation of persons with disabilities. Requests for accommodations shall be submitted to the Office of Disabilities for Students.
Am I totally satisfied with that? Not completely. I think it's progress, since there wasn't any information about accommodations before. I know that contracts are all about basic compliance and legal language. I've still got the same issue with "will follow Federal and State law" here that I do with it on syllabus statements and generally everywhere.

About the Author

Alyssa is a PhD student in neuroscience, an Autistic activist, and a disability studies scholar. They're interested in assistive technology that's not about imitating the standard ways of doing/being, and which addresses the mismatch between a person's abilities and environment rather than considering the problem to lie entirely within the person. Their art features on the covers of Typed Words, Loud Voices and The Real Experts: Readings for Parents of Autistic Children.

Monday, 13 February 2017

Disability Accommodations

Written by Jennifer Mankoff 
We have kindly been given permission to repost this from
I have spent the past two weeks exploring what it means to work with Lyme disease from a new perspective. I’ve blogged before about why I think it’s valuable to view Lyme disease through the lense of disability. I’ve also blogged extensively about work and Lyme disease. However, I’ve never really put the two together. An important question, for those of us who work with Lyme disease is what accommodations, if any, are appropriate to ask for, and how one might go about doing that.
First, it is important to know about the Americans with Disabilities Act (ADA), which protects people with disabilities from discrimination. The ADA specifically prohibits discrimination by employers with 15 or more employees, public entities, public accommodations, telecommunications, and so on. It was passed in 1990 and progressively narrowed by the courts in terms of the situations to which it applied. Thanks to an amendment in 2008 it was broadened again to ensure that it focused on discrimination across a wide range of disabilities. Because of that change, Lyme disease is now covered by the ADA.
An important implication of the ADA is that employers need to make “reasonable accommodations” for their disabled employees. This specifically means (from the official ADA website): “Reasonable accommodation is any modification or adjustment to a job or the work environment that will enable a qualified applicant or employee with a disability to participate in the application process or to perform essential job functions. Reasonable accommodation also includes adjustments to assure that a qualified individual with a disability has rights and privileges in employment equal to those of employees without disabilities.” The key factor here is to define essential job functions and the accommodations needed to achieve them without causing undue burden to the employer.
But what does this mean for Lyme disease? To answer that question, I turned to the Job Accommodation Network (JAN), a nonprofit site that provides “free, expert, and confidential guidance on workplace accommodations and disability employment issues.” JAN has a Lyme disease information page, where they provide specific recommendations for accommodations such as a flexible work schedule, work at home options, periodic rest breaks, and reduced stress. There is also a great deal of useful ADA information on Anapsid’s site including a very practical list of ADA-related government organizations, what sort of help they might provide, and where to contact them.
I also turned to resources for other fatigue-related, often invisible illnesses. For example, there is a wonderful article on how several people successfully managed Lupus accommodations at and JAN has a Chronic Fatigue article that includes several specific examples of situations and accommodations.
The question remains, then — what accommodations, if any are reasonable for me. However, in my job, the question is only partly what accommodations one should ask for. It seems to be equally about who pays for the accommodation. Within the university hierarchy, that could be the university, the department, or the faculty member him or herself — all three have “work” funds that they raise in various ways. The fund raising burden is highest for the smallest unit (the faculty member), but a faculty member has a great deal of freedom in deciding what accommodations to pay for if paying him or herself. In any case, it’s not clear that payment responsibility is specifically covered by the ADA, and I have been able to find nothing written about the topic so far.
That aside, the job I’m in is luckily very flexible. The thing that is least flexible is teaching, and the question of what support is appropriate or necessary for teaching is something I’ve been thinking a lot about. The other thing that is true of my job is that there are sometimes large spikes in work load (for a few weeks due to a conference deadline, for a whole semester given a very difficult teaching assignment, etc.). It seems to me that managing (or limiting) spikes in my workload load is something that would make things much easier. Another aspect of my illness that can be difficult is managing low energy points. If I limit my work to my normal capacity when feeling unwell, then I can provide steady but lower effort to my university. If I work to my normal capacity when feeling well, then I accomplish more but the weeks when I am feeling unwell become very difficult. The accommodations needed in either case shift as well — an overall lower workload vs a support structure that can fill in the gaps in the difficult weeks.
A last observation about this process: It may seem clean cut when I describe this in terms of the moral/legal world (human rights), but in reality the process is complex and messy just as any interpersonal negotiation may be, especially in an organization the size of my department. My university is large, but any changes I request in my job will most directly affect myself and the people around me. And the person-to-person side of this is complicated by the invisible and uneven nature of my illness.
About the Author

Photo of the author
Dr. Jennifer Mankoff is a Professor in the Human Computer Interaction Institute at Carnegie Mellon University. She earned her B.A. at Oberlin College and her Ph.D. in Computer Science at the Georgia Institute of Technology. Her research embodies a human-centered perspective on data-driven applications. Her goal is to combine empirical methods with technological innovation to construct middleware (tools and processes) that can enable the creation of impactful data-driven applications. Example application areas include sensing and influencing energy saving behavior, web interfaces for individuals with chronic illness, and assistive technologies for people with disabilities. She helped found the sustainable-chi group ( Her research has been supported by Google Inc., the Intel Corporation, IBM, Hewlett-Packard, Microsoft Corporation, and the National Science Foundation. She was awarded the Sloan Fellowship and the IBM Faculty Fellowship.

Monday, 6 February 2017

Taking time off your PhD for recovery

Written by Daniel Rough
At some point in our PhD lives, nearly all of us experience feelings of self-doubt. We may feel that we aren't 'good enough' to be doing a PhD. We might feel like despite our best efforts, our progress has hit a standstill. The pressures of academic life can end up taking their toll on our mental health. Indeed, an article in The Guardian reported that there is a 'culture of acceptance' of mental health issues pervading academia (you can read this article here).
Cycle showing that lack of progress leads to stress and anxiety which in turn leads to lack of focus and a further lack of progress.

One part reads: "...I see students and academics who view the researcher development service as unnecessary. I see students who imagine using our services as an "admission of defeat". To come to us, is to announce that you are not a perfect researcher."
For too long, I felt this way. I felt that admitting I was struggling was to admit that I was incapable, that I was weak, that I wasn't cut out for this. "Everyone else seems to be doing fine, what's wrong with me!? I'm obviously not working hard enough" I'd tell myself again and again. I tried to ignore the fact that starving my body was starving my brain, but I knew I was caught in a vicious cycle where work was affecting my health, and health was affecting my work.
Taking a leave of absence was a lifesaving decision. Since returning to university, I've felt much happier, and able to manage my life better. I'd like to reflect a bit on the factors that helped my leave of absence to go well.
#1: Keeping busy
One thing that hit me when I went off on leave, is that I made the transition from overworking myself to suddenly dropping all work altogether. This took a lot of adjustment, and my anxiety shifted from "I've got too much work to do" to "I'm wasting my time being unproductive!" Despite being off to relax, it was having the opposite effect, aaaargh!
I recommend setting yourself a project of some sort. It can be anything that has you put your mind to something. As humans, we naturally thrive on the satisfaction of work (admittedly some more than others) and have a need to feel useful. Using my example, I would strongly recommend starting a blog! Being able to chart my progress, while exercising my creativity, gave me a sense of purpose.
Of course, don't go starting your PhD work again while you're off on leave. However, acquiring knowledge that could be helpful for your research and career is also a productive path to go down. Whether it be learning a new programming language, learning how to write in a certain style, or even learning how to organise your life goals.

#2: Staying connected

In the months leading up to my leave of absence, I became socially isolated. I worked hours that would minimise the chance of meeting anyone in the office. I would ignore any social opportunities, if anyone asked, I would reply "I have some work to finish off". The PhD is generally a sole undertaking; you work on it yourself and are responsible for the outcomes. That means when we stop communicating with others, stop maintaining a social life, PhDs can be very lonely indeed.

When off on leave, I had my family there all the time, who I could talk to about anything, positive or negative. Eventually I made an effort to meet up with friends, too. In time I realised the importance of staying connected with people. I'm not suggesting for a minute that this is easy. Feelings of disconnectedness and anxiety can make social interaction terrifying.

Take it slow. Even just sharing a post on social media or having a chat about the weather with the cashier in Tesco, learning to socialise again was a big step in my recovery.

#3: Enjoying hobbies

I feel that it's important to give yourself a sense of purpose while you're off on leave. Remember though, you're taking a break from work! One of the best opportunities that leave affords is time to pursue hobbies and interests. When you return from leave, maintaining a work-life balance is essential. Do you have anything you used to love doing that you've had to sacrifice? Or maybe it's a good time to find a new passion!

When we focus on nothing but work, it can be like putting all our eggs in one basket. If work is going well, then it's easy to be positive and motivated. However, when research hits a stumbling block, we all need something at the end of the day to make us feel better. Take your mind off work by going for a walk, reading a novel, baking a cake, whatever you enjoy! I wouldn't discount Netflix and chill either.

#4: Embracing change

Image containing the saying that "The secret of change is to focus all of your energy, not on fighting the old, but on building the new...".
At university, I had a routine, which became somewhat of a ritual. I felt extreme discomfort and anxiety in deviating from this routine. In returning to live with my family, I was no longer a slave to this routine. This took some getting used to, and initially it was quite frightening to not have those daily rituals.

In time, however, I learnt that I could cope without them. Routines are great and can keep us focused, but when we get tied into ritualistic behaviours, they can be damaging. Taking time off on leave is an opportunity to test yourself. Do something a bit different, shake up your routine. Again this is something I would take slowly, but it can be as simple as taking a different walk or having something new for lunch!

All in all

Taking leave may seem like a 'last resort' but try not to see it that way. Looking after your health is your top priority. With time to dedicate to your mental health, you can come back stronger and more focused. If a football player breaks their leg, they don't insist on playing as normal, they take time off to get better. Your mental health is no different!

About the Author

Photograph of the author
My name is Daniel, and over the last year I've been blogging about my recovery from anorexia at I want to offer my experiences, insights, struggles and achievements on my path to recovery. In doing so, my goal is to give hope and assurance to those in a similar situation. I’m 25, Scottish, and a PhD student at the University of St Andrews. Last year I took 6 months off my PhD to focus on anorexia recovery, during which I started my blog. Please have a look at this post on why I decided to take this time off. When I'm not researching or blogging, baking is my passion, and if I get fed up with the PhD, my fallback plan is to open a bakery 😃

Tips for Success in Academia When You are Different

Written by Temple Grandin
I learned a lot by reading my student evaluations of my teaching. There are two kinds of critical evaluations. They are: 1) Ones that provide constructive suggestions on how to improve my teaching and 2) Nasty comments. I learned that I had to disregard the nasty comments and learn from the constructive criticism. Early in my career a student who was in more than one of my classes commented that I always gave the same lecture. The mistake I had made was using the same introductory slide for two different lectures in the two classes. I immediately made the introductory slides different.
In any job, it is important to keep copies of all your annual evaluations. Building your portfolio is also important. In academia published scientific papers are a major part of your work but there is often other work that is not formally published. If you have built a really innovative piece of equipment, make sure you photograph it. Other work you should keep copies of are: grant proposals, computer code, scientific data, statistics programs, artwork and drawings. Since I was weird, I had to sell my work and not myself. In my consulting work, I sold my services as a livestock equipment designer by showing photos of completed projects and drawings.
I recommend keeping paper copies of your most important work that has not been published in either the formal academic literature or in a book. Electronic formats keep changing and ten years from now, it maybe difficult or impossible to retrieve the material. Print out photos and drawings on high quality paper and protect them from light. Keep a hard copy of your best work at BOTH your office and at home. We had a flood on our campus and both students and faculty had research work destroyed. The materials you save can be used to make a portfolio if you ever need to get a new job. The portfolio can also be used to show your work if you get into a conflict with your boss or colleagues.
Getting Along with Colleagues
When I worked on a team project, I learned that it is best for me to have a well-defined piece of project that is my responsibility. The scope of my area of responsibility should be defined at the beginning of the project. For example, I will write this specific section of the paper and get it done by a certain date. My colleagues on a jointly written report sometimes made mistakes. I learned never rub their noses in them by calling them stupid. I worked on one project where I quietly corrected the mistakes that others had made. Our jointly authored scientific paper was successful. One must remember that the goal is to produce a good publication.
To get a long with colleagues, you have to make a decision about where your life is going to lead. Is political advocacy your main goal in life or is it professional success? Being successful at both is almost impossible. You have to make a decision on what is most important to you. In conclusion, you must always do your job with integrity.
Publications that May be Helpful
Grandin, T. (2006) Thinking in Pictures, Expanded Edition, Vintage Press, Random House, New York.
Grandin, T. and Panek, R. (2013) The Autistic Brain, Houghton Mifflin Harcourt, New York, New York.
Grandin, T. and Barron, S. (2005) The Unwritten Rules of Social Relationships, Future Horizons, Arlington, TX.

About the Author
Mary Temple Grandin is an American professor of animal science at Colorado State University, world-renowned autism spokesperson and consultant to the livestock industry on animal behavior. She is widely celebrated as one of the first individuals on the autism spectrum to publicly share insights from her personal experience of autism. She is also the inventor of the "hug box", a device to calm those on the autism spectrum. In the 2010 Time 100, an annual list of the 100 most influential people in the world, she was named in the "Heroes" category. She was the subject of the award-winning, semi-biographical film, Temple Grandin.

Uncovering the Interpretation Process: Emphasizing Flexible Communicative Practises in Academia

Written by Rachel Kolb
“Let’s turn to talking about Derrida’s ideas about psychoanalytic temporality, and how this affects the construct of the signifier and the signified.”
This kind of sentence comes up on a regular basis in my graduate seminars, and immediately I see my American Sign Language interpreters’ faces contort and go, huh?
Granted, my interpreters are usually good at working through this, good at parsing through rapid-fire auditory information spoken in academese (truly more exotic of a language than ASL!) by a group of humanities scholars who do not need to access our institution, as I do, through real-time transliteration. Even while my professors and peers see me sitting beside them in class each week, as I attempt to be present and participate like they do, my guess is that only a few consider what this can be like. I don’t fault them this omission, not entirely. My experiences of being deaf in academia can be quite different than theirs as hearing people – although I would argue that these experiences are still adjacent, still interwoven with lessons about communication that resonate with us all.
So, Derrida. And something about signifiers. As I watch my interpreters listen to a sentence like this, then pause, then sign, the thought flashes across my mind; here we go again.
I have no choice but to jump in. I try to figure out, with interpreters, what my graduate seminar is currently discussing and how I can engage. We constantly deliberate (both on the fly in class and on a lengthier basis afterwards) how to sign certain words; are our signs nuanced and conceptually accurate? What if ASL has not developed a way to express that idea yet? How does one sign “signifier” and “signified”? We debate, come up with a new sign, try again the next time the word comes up in class. Throughout the process, remember that my interpreters, several of whom have been working as professionals for decades, are listening to our classroom discussion about Derrida without anything near a specialist background in the field. The concepts covered in my theory courses are difficult enough for specialist graduate students to listen to and understand; now imagine listening to and translating them on the fly for someone else, all without much (if any) conceptual exposure to what you are interpreting. Then, on top of that, imagine listening to the typically messy dynamics of human conversation: people speaking quickly, mumbling, sometimes interrupting each other, garbling their words, not considering how clear (or not) all this might sound to someone else. My interpreters flip through my class readings and try to prepare to interpret, but there are times when their ears and their brains can only do so much. There are times when, in the flurry of the moment, they show my hearing colleagues profound reservoirs of patience.
I admit, I sometimes like it when their patience fractures (or when mine does) and we need to stop and ask someone to repeat their words, but more clearly this time. These moments, even if they sometimes feel disruptive, can show how hard we both are working to occupy this space. These misunderstandings, these bits of missed information, can expose the bare bones of the interpreting process. For I am working hard, too: watching, thinking, correcting any mistakes, calculating what that utterance might really have meant, willing my retinal muscles to focus, converting sign language back into English in my head. I do this while sometimes feeling, I admit, envious of my hearing peers who can sit in class and just listen. The process of watching interpreters feels cognitively demanding, on top of the demands of the classroom material. Seeing ASL transliteration all day can consume all of my attention and all of my focus – something I used to shrug off as normal but something I now feel more pressed to acknowledge as unique. I often walk out of a challenging class and feel spent. I want to plop my brain into an ice bath.
The academic setting does not often acknowledge these kinds of hidden labors and hidden challenges for the deaf people in its midst. Even when access is presumably provided through a sign language interpreter, this does not mean the deaf person automatically will access the class, discussion, or conference setting the same way as a hearing person. Even if the deaf person chooses to use an alternative set of accommodations, such as Communication Access Real-time Translation (CART) or C-print captioning, many of the barriers I have described may still exist.
At the same time, I accept what I have decided to do in pursuing a PhD. I accept that, while working in academia, I will need to find a core group of skilled interpreters who will put effort into learning the specialist vocabulary for my field. I accept that I am among a generation of signing deaf individuals who now work and study in colleges and universities after living with the provisions of the Americans with Disabilities Act (ADA), and who are now helping develop the ASL lexicon to suit the academic work we do. I accept that watching ASL interpreters exposes me to a different kind of real-time cognitive load than my hearing colleagues may experience on a daily basis. All of these realities reemphasize the importance of developing new ways to pursue the same kind of excellence all my colleagues and mentors do, while acknowledging that my path might be a different one than theirs – as it has been all along. That path involves continuous advocacy and also attention to self-care, but it still can feel exciting. Along with other deaf and hard-of-hearing individuals, I am helping push forward a new frontier of language use and professional development. A few decades ago, aspiring deaf academics did not have these opportunities.
What I’d like to do is communicate the barriers that still are there, in situations where accessibility in name does not become full accessibility in practice. A sign language interpreter can become just a warm body in a room without adequate preparation or awareness. Using an interpreter can be an experience of making oneself extremely communication-savvy, of mastering good communication strategies that might not occur to some hearing colleagues but that can still help in expressing ideas more clearly. Among other pieces of savvy, I have learned these:
I recognize that information can be expressed visually and physically, not only auditorily – and that inclusion and comprehension will improve with more of these sensory channels, not fewer. I recognize that anyone can only take in so much information at a time, and that one cannot assume the knowledge base or background of one’s audience, even within a specialist field. I recognize the importance of being flexible, of repeating or rephrasing when needed, of altering my patterns of self-expression to connect with my audience. I have learned that I need to express my needs and recognize my limits in order to participate most fully in a conversation, and that other people do, too. Finally, I know that misunderstandings and needing to ask for clarifications are just part of life – and also good opportunities to deepen my knowledge, besides. Communication strategies that enable good sign-language interpretation are often good communication strategies, period.

It is not new to say that creating a culture of effective communication can benefit everyone, and not only a deaf academic and her interpreters, but it still bears repeating. Striving for a more open communicative culture requires advocacy and participation from everyone, not just anyone who is deaf. I have seen this before in academia: I have been in seminars where professors tactfully modulate the conversation for its rapidity and volume, write unfamiliar terms on the board or request that other students spell them out as they arise, include extensive written handouts to supplement oral discussion, or use a visual outline or live notes on a projected computer screen to help students follow what is being said. I have attended conferences and talks where the speaker regulates his or her own pace, includes a print-out of the presentation both on the spot and in advance, and provides a list of key terms (and their definitions) for interpreters and anyone else. Practices like these recognize that accessibility is not solely an institutional responsibility, in which formal accommodations are made, dispensed, used, end of story. Rather, they recognize that accessibility is also a collective, communal responsibility, in which all individuals can contribute toward a clear and inclusive communication environment.

Academia is not always the best at promoting clarity and accessibility, beyond formal accommodations. Discussions can be rapid-fire, solipsistic, full of jargon and assumptions that everyone receives information the same way. Creating better communication practices, both in the classroom and outside of it, will involve this kind of behavior shift. It will involve expressing individual needs and concerns, and also encouraging collective accountability – with the emphasis that good communicative practices can benefit everyone, not only those who identify as deaf or disabled.

About the Author
Photo of the author
Rachel Kolb is a Ph.D. student in the Department of English at Emory University, where she is also pursuing a graduate certificate in bioethics. She has prior master's degrees in literature and higher education from Stanford University and the University of Oxford, which she attended as a Rhodes scholar. Her research interests include 20th century American literature, disability and Deaf studies, science and literature, the health humanities, and how cultural ideas form about communication and embodiment. She is also committed to advancing public conversations about communication and accessibility, and her other written work includes publications in the New York Times and the Atlantic.