Ten Ways to Make Conferences Accessible to People with Disabilities

Written by Debra Guckenheimer 

Debra kindly gave us permission to re-post this article from medium.com.  The original can be found here:

ten-ways-to-making-conferences-more-accessible-to-people-with-disabilities

Attending workshops, lectures, symposium, conferences, and other events are difficult or even impossible for some people with disabilities. Rarely have I seen disability given much thought in conference planning, even when the topic is diversity and inclusion.

Here are ten ways to making your conferences more inclusive of people with disabilities. Many of them cost little to nothing other than a little forethought.

1. Accommodation Point Person:

   Assign a person to be responsible for providing accommodations when needed. This person ideally should have some training in disability inclusion and encouraged to think creatively about how to accommodate potential attendees and speakers. Publish a phone number available during the event so that someone is available to address issues as they arise.

2. Advertising and Publicity:

   Include a statement about your desire to be inclusive of people with disabilities. Provide contact information for your accommodation point person as well as information about all accommodations you have arranged. All photographs in publicity should include a caption describing the picture for the blind and visually impaired who use screen readers.

3. Interpreters:

   Provide an option of a deaf interpreter. If you have the funds, hire the interpreter for all events or at least the larger sessions. Having the interpreter allows for attendees to not have to make the request in advance as well as demonstrates your commitment to inclusion. If funds are tight, offer to provide an interpreter upon request.

4. Ushers:

   For the blind and visually impaired as well as for people with difficulty carrying materials around with them, have someone available to escort people around large conference spaces. If your event requires walking across long distances, have wheelchairs available for escorts to transport participants who need help getting across the space.

5. Parking:

   Does your space provide adequate parking spots for people with disabilities? If lack of parking is an issue, consider providing extra reserved spots for those with disabilities. Consider how people with wheelchairs as well as those without but who have limited mobility can maneuver the space. If a separate entrance is needed for those who cannot climb stairs, make sure the entrance is not locked. Allow people to independently be able to enter your venue. If it isn’t self-explanatory, have clear instructions for where ramps and reserved parking for those with disabilities are located.

6. Location and Set-Up:

   Be sure your venue is wheelchair accessible — both entrance and bathrooms. When planning the set-up of your room, ensure that isles are wide enough for wheelchairs. Leave space at the side and back of rooms so that people who need to stand can do so.

7. Inclusion Supplies and Supports:

   Want to go above and beyond? Provide a separate space where attendees can comfortably relax, especially for longer events and conferences. Have more comfortable chairs and foot stools in these spaces. Ensure space for attendees to stretch there if needed. Inside your event, provide back supports, cushions, and/or portable foot stools so that attendees can make the seating fit their bodies.

8. Food Allergies and Intolerances:

   If you are serving food at your event, consider taking a few steps to allow participants to keep themselves safe. Keep common allergens out of your menu, and announce menus ahead of time including if the menu is free of these. Keep your event space peanut/tree nut free since those allergies often respond to any exposure. Label foods being served (or if using wait staff, have them informed) including if they contain and/or are free of common allergens. If you are aware of an attendee having an allergy, do what you can to accommodate. Providing an alternative food is more inclusive than asking an attendee to bring their own.

9. Audio/Video Streaming and Conferencing:

   Being physically present is just not possible for all people. If you take advantage of one of the many technologies available to audio/video streaming or conferencing. At the most basic, you can allow people to hear and see speakers. With more investment, you can allow speakers to present and participations to ask questions without being in attendance.

10. Social Media Participation:

    With social media, we can rethink what participation looks like. Create a hashtag for your event so that participants can use it to follow each other’s posts. Create a Storify page to track postings and create a permanent website with tweets and streaming. Provide a listing of all speakers and participants that include social media used to encourage participants to connect. Virtual Connecting is an organization is rethinking academic conference participation. They have ideas about how to connect people physically present as well as those participating online.
Don’t stop with my ten tips. The best way to be inclusive of people with disabilities is to engage in conversation. Ask people with disabilities that you want to participate at your conference what they need. Be open and creative. Making your conferences and other events more inclusive for people with disabilities will also make them more inclusive for all people.

About the Author

Photo of the author

Debra Guckenheimer is a Research Associate at the Clayman Institute for Gender Research at Stanford University. Previously, she was a Research Associate at the Hadassah Brandeis Institute at Brandeis University, a Visiting Assistant Professor at Bowdoin College, and a Postdoctoral Research Associate with the NSF ADVANCE Institutional Transformation Program at Northeastern University. She is an expert on social change efforts to reduce inequalities based on race, class, gender, sexuality, and disability. She has appeared in USA Today and on public radio. Her work has appeared in the Women’s Studies: An Interdisciplinary Journal, The Feminist Wire, The Handbook of Positive Organizational Scholarship, and Doing Diversity in Higher Education. She has a Ph.D. in Sociology from the University of California, Santa Barbara and a B.A. in Politics from Oberlin College.

PhD funding during illness: cancer, consequences & suggestions for change

Written by Claudia Pama

The last thing I wanted this blog post to become is some whining account of my personal experiences, but if you sense any of that while reading it, I sincerely apologise and greatly admire your perseverance if you make it to the end. At the same time, I really hope you do (make it to the end, that is), as it’s not about my experiences (which solely function as an example), but about changes that should be made to a system where PhD students who fall ill are currently being punished for doing so.

Brace yourself (admittedly, it's rather long, too).

The message that you have cancer is never easy to digest, and the timing is never right. I received mine on an evening in February 2015, while pressing my phone against my ear to identify the words my oncologist was uttering (‘I’m very sorry to bring the bad news’, ‘what stage is it?’, ‘we can’t tell, you will have an MRI to determine that’, ‘can it be terminal?’, ‘I’m sorry, we don’t know at this point’, and so on), as I was standing in a busy London street. Just a couple of weeks into my second lab rotation (part of the PhD programme I am currently enrolled in), I realised that the next months would require all my energy and organisational skills. Several doctor appointments, an MRI scan, discussions, decisions about my exact treatment and sketching a general action plan for the next weeks followed.

On the bright side, it turned out my cancer was an early stage, and I was able to receive a specific type of surgery (most likely not readily available to me back home). What’s more, I was positively shocked by all the support I was given from friends and those that didn't even know me that well – Cambridge felt like the best place to get cancer (or, more accurately, the least bad one). Largely because of this I managed to finish my rotation successfully, and arranged a period of medical intermission, starting on the day of my surgery (planning an intermission requires some effort, including the needed paperwork, medical letters and meetings with several people - while it’s no fun to do these things, most people were very supportive throughout this process).

In the chaos of arranging things and coping with the situation, I didn’t quite check the regulations of my funding bodies in too much detail (not that I had much choice anyway; the treatment plan was set up in Cambridge and I needed to get time out for treatment and recovery). Little did I know that, after politely informing them about my medical intermission, one* would reply by stating that this would affect my maintenance payment, and that any maintenance paid during this period was officially to be refunded. This was followed by some options, which effectively included multiple scenarios of the same one (pay back now, pay back later, pay half of it now, half of it later, don’t receive funding during a subsequent term, etc.), ending with the wonderfully paradoxical comment ‘the choice is yours’.

After more e-mail conversations (during which I explained my situation, stressing that my treatment had to be completed in Cambridge and I was fully dependent on my scholarships, in reply hearing that unfortunately no hardship or extension funding was available either), we eventually came to an ‘agreement’: instead of paying back my maintenance stipend during my intermission (which I couldn’t afford to do), I will be left without funding for the last term of my PhD (I still need to find a suitable solution). Of all my ‘choices’, this seemed to be the least bad one. As you can imagine, discussions like these are the last kind you want to engage in while being stressed about your health, work, finances and future, but unfortunately they seem to be more common than we would want them to be.

During the intermission period, I couldn’t wait to start my planned PhD experiments as soon as I was fully recovered. Although I knew that something wasn’t quite right about the way my funding was arranged, I didn’t really know anyone in a similar position and felt slightly powerless as an individual. Yet here comes the beauty of our digital era: one day my friend Edwin (a PhD student at the University of Oxford) wrote this blog post about his experiences, and I messaged him immediately. It turned out that he was in touch with Stella, who is doing a PhD at University College London and has just been through treatment herself. It made us realise that we’re not the only ones going through this, and what’s more, we’ve either experienced issues with funding bodies ourselves, or heard stories of others going through something similar. That’s when we decided to write a correspondence letter to Nature, published just over two weeks ago.

The question arises about what would be a reasonable solution. There is wide heterogeneity amongst funding bodies when it comes to medical leave; some fund part of it, some none. In our correspondence we suggest that PhD students should have the same rights as academic staff when it comes to medical leave (e.g. six months of paid sick leave) – in the end they essentially work like full time employees, so why shouldn’t they be treated as such? Alternatives already exist, one example being the Marie Skłodowska-Curie programmes for PhD students. The European Commission requires that grantees are offered a staff contract, thereby protecting their rights to sick leave. We propose that other UK funding bodies should also provide such basic rights with their grants, at the very least including a decent sick leave arrangement.

One final thing – if you are one of the unlucky ones going through something similar right now: don’t despair. Ask everyone for support; your supervisor, boss, tutor, mentor, College, friends – there might be help available that you are not aware of until you ask. Each problem has a solution, and chances are you will find it when you keep searching. In the same way, we hope that by raising awareness, changes will be made to the current situation, where PhD students who fall ill are receiving a double whammy. (Now, dear reader, you truly deserve my endless admiration by making it to the end of this blog post: thank you!).

*I won’t mention the exact funding bodies involved, and I am grateful for receiving funding from all my sources in order to complete a PhD degree. However, it’s essential to give specific examples like this one to raise awareness of the issue.

About the Author

Claudia Pama is a second year PhD student at the University of Cambridge.

Achieving Greater Acceptance in Academia

Based on an interview with Ian Shipsey 

I grew up in a working class district on a notorious council estate (housing project) in London's East End. I was hearing at that time. My high school had 180 students per year. Only two of us went to university. My parents had left school at 16. As far as I am aware none of my fellow students had parents who had attended university either. I went to the local university; Queen Mary, in London to study physics. I then took a PhD in particle physics at Edinburgh where Peter Higgs was one of my teachers. Shortly after arriving at CERN, the main particle physics lab in Europe, I fell in love with a wonderful Italian physics student who was heading to the US for a PhD so we began a transatlantic relationship until I had completed my PhD then I went to America to join Daniela. Daniela and I married and have one child. Shortly after getting married, while Daniela was still a student and I was a postdoc and both of us were working on the CLEO scientific collaboration at the Cornell Electron Storage Ring (CESR) a particle accelerator at Cornell University, I contracted acute myelogenous leukemia and was treated by a remarkable team of doctors and nurses at the Cornell University Medical School in NYC for more than one year. An industrial strength dose of chemotherapy beat the cancer but left me without an immune system and a medically necessary dose of broad spectrum antibiotics protected me until my own immune system had returned. A side effect off the antibiotics was irreparable damage to the hair cells in both cochleae resulting in severe sensorineural hearing loss.

Although still a postdoc I had already accepted a tenure track assistant professorship before becoming ill. I was very fortunate, had the timing been different and I had become ill before job season had commenced I would not have had that position and would have been regarded as unemployable by many. I accepted the job about a week before any symptoms appeared. The postdoc was at Syracuse University and the faculty position at Purdue University. After recovering enough to take up my new position about a year later, I then moved to Purdue which is about 120 miles (180 km) south of Chicago in Indiana and Daniela came too as a postdoc.

The unconscious assumption of able-bodied people is that deaf people are less able to teach or conduct research. Being underestimated is OK up to a point. In my field in the US it is typical to take one or two postdocs, each of 3 to 4 years duration, before becoming an assistant professor. I had only been a postdoc for 2.5 years when I was offered the job at Purdue (and jobs at other schools) so I was considered very promising. Purdue was a big physics department with about 60 faculty and about 57 of them had never met me as hearing person. They thought life had been dealt a very tough hand, they were kind and empathetic but they found it hard to consider me any longer as promising.

It was assumed I could not teach and nobody was quite sure what to do so I was left to my own devices. I did some research partly funded by the start-up given to me by Purdue and then wrote three proposals for young scientists, two of which were successful and resulted in very significant funding. One was the National Science Foundation National Young Investigator Award which that year only two people in the US were given in my area. Having won the awards, it is customary to be considered for early promotion to tenure to pre-empt other universities from poaching but in my case I had no teaching record so I could not be promoted. To fix that I was given an opportunity to teach which I had no experience of doing. The teaching experience was wonderful. Being deaf served to make me a better teacher because I strived harder to be especially clear so that the number of questions students had tended to build and extend the material I was explaining rather than asking for further explanation of what I had already "explained". At the end of the semester I received the physics professor of the year award. The award is given by the physics students at Purdue including those I had taught. It means to this day a great deal to have received it. The award helped to establish my ability as a teacher and I was promoted to tenure. Meanwhile Daniela became an Assistant Professor and our daughter Francesca was born.

When I moved to Purdue I continued to work at Cornell for most of my research. A small network of friends on CLEO, all able-bodied, took it in turns to help me by taking notes at meeting. They said that in front of their eyes they saw a transformation in my ability to contribute, often decisively, to discussions. Eventually this led to I and several others developing some new ideas, and to me being elected the scientific leader of the collaboration and the award of very substantial funds to conduct a new program in particle physics at Cornell. It was while leader of CLEO that I explored cochlear implants and received one.

Prior to my cochlear implant, communication with students especially in large classes was difficult. To solve the problem I asked students to write questions down on paper and pass them up to the front of the class. Students in large-enrollment physics courses are often very shy about standing up and asking questions; writing the question made it anonymous and hence easier for students to ask questions. The method was subsequently tried out by some hearing faculty to good effect. I sometimes communicated with my own doctoral students through bone conduction; the student and I both leaned our heads against a wall and the student talked into the wall and I could sometimes comprehend what was being said though the vibrations combined with lip reading. In any situation where I was not a focus (such as in the audience at a conference) understanding what was happening was very difficult so I avoided conferences and did not in general network. Conversations were difficult. Hearing people feel awkward speaking to deaf people first because nobody enjoys saying something and not being understood and second very few hearing people have had any experience of talking to a completely deaf person.

There were two turning points in my ability to communicate. The first was that physicists in general are very interested in the research of other physicists. In the CLEO collaboration at Cornell, everyone knew me as a hearing person who became deaf. This meant that the deaf stereotype was not applied to me so strongly by that group and there were several faculty at Cornell who proactively began to help me with communication, offering to take notes for me. In addition, I began to request stenographers at Purdue and Cornell.

At conferences today, I simply sit in the front row and if I cannot understand I ask people to speak louder and slower and to repeat what they have said but I would not have had the confidence to do that in the early days.

I did not find it easy to gain access to stenographers as they are few and expensive. In principle the deaf students and I had the right to a stenographer, but there were more of us than there were stenographers. I used stenographers occasionally until 2003 when I had the cochlear implant. It’s quite likely that there are many parts of the world where students who are unable to hear do not have sufficient access to stenographers today.

In my field, some of my postdocs and students will typically be based at CERN. Communication remotely was very difficult before I received the implant. It was mostly text based (shared electronic logbooks) and email. Now we communicate via Skype and video conferencing. On experiments in particle physics everybody takes it in turn to run shifts operating the experiment. After I lost my hearing, but before I received a cochlea implant running shifts was hard for me, as although we have a lot of visual information when we run shifts, there are also purely audio cues such as alarms that it would not be possible for me to hear. However, colleagues happily and kindly installed visual equivalents (warnings on a computer screen when the alarm sounds). This enabled me to feel comfortable taking the shifts as with the accommodations that had been made I could now do the job as well as when I could hear and as well as other physicists. Much of the work I do is in my office, but when in the laboratory the work is visual and I have many wonderful students and postdocs and engineers and technicians working with me and helping me, almost all are able-bodied.

I find it difficult to understand amplified voices. This is because amplification distorts voice as well as making it louder. For hearing people, the noticeable effect is the volume increase whereas the distortion is usually unnoticeable or at least not distracting. For many with a cochlear implant the distortion dominates any gain in volume. This is because cochlear implantees have less sense elements than those with natural hearing so our auditory pattern recognition is inferior. If the auditorium is small I request people do not use a microphone to ask questions but if the auditorium is large I ask the audience to write down their questions.

Before I had my hearing restored I was elected three times to be the leader of the CLEO Collaboration, a group of 21 universities and about 180 scientists at Cornell. After I received a cochlear implant, I became Head of the LHC Physics Center at FNAL and was elected Chair of the Collaboration Board of CMS (one of the two experiments at CERN that discovered the Higgs). I was hired at Oxford to become Head of the sub-department of Particle Physics in 2013 many years after I became deaf and had a cochlear implant.

I need no special resources now except the cochlear implant. I do ask people to look at me when they are speaking to me, and when people mutter I ask them to speak clearly. I do not participate in the sign language community because nobody I knew professionally or outside work could sign. I have met with signers though to talk about my experiences with the aid of SL interpreters. Since receiving the implant, I have found that I am much more likely to be placed on committees and more frequently asked to give talks and more generally given opportunities as it has become easier to communicate. Throughout my career in the US and UK my colleagues have always been very supportive.

It is a real phenomenon that many scientists feel conflicted about acting publicly as a scientist with a disability because there is a risk they might become less known for their science and more known for their activism. The same thing happens when an academic engages significantly in outreach to the public or to school kids. One starts to become known for outreach and academic colleagues will question if you are a devoted academic. My strategy to deal with this is as follows: if I am invited to an event to give a talk because I am deaf, I concentrate mostly on my work, what I have accomplished and how rather than concentrating on the disability. The result is that people see an example of a practicing scientist passionate about their work who happens to be deaf. With this strategy I am not trying to trivialize the disability, I am trying to show that its effects can be overcome.

One of my doctoral students had a very severe speech impediment. He was an outstanding student with outstanding grades, yet he had difficulty to find a professor to supervise his thesis. He was very bright and we did great work together. Looking back now it seems to me a person with a disability is sometimes more sensitive to the difficulties faced by others with disabilities, and in some cases this makes them better prepared and more confident they can effectively help and supervise the student. That is certainly the reason I took the student. I did not see the disability as anything other than surmountable.

I generally disclose my deafness. I am proud of it. O Course, I would prefer to have natural hearing but I am inspired by the incredible technology of a cochlear implants that, when married to a human brain, can enable an implantee to understand much of the auditory world. To achieve greater acceptance of disabled people in academia, we need more role models. We need access to the right types of support so that people with a disability are not disadvantaged by that disability to the extent possible.

 About the Author

Ian Shipsey is the Henry Moseley Centennial Professor of Experimental Physics and Head of the Sub-Department of Particle Physics at the University of Oxford and Professorial Fellow at St. Catherine’s College, Oxford.

Wanted: Disabled Faculty Members

Written by Jay Dolmage and Stephanie Kerschbaum 

We have kindly been given permission to re-post this article from:

Advice Hiring Faculty Members Essay

When one of us -- Stephanie -- was on the job market for the first time more than 10 years ago, she agonized over whether and how to mention her disability (she is deaf) in her job materials. She knew from past experience that by not saying anything, she ran the risk of creating potential misunderstandings during interviews.

When she managed to secure more than a dozen interviews at the Modern Language Association conference, where English departments perform much of the preliminary interviewing for hires, she set to work. In addition to helping arrange for interpreters in a city where she and most of the hiring departments meeting with her had few contacts, she opened every interview by taking time to explain who the interpreter was and how committee members should interact. In addition, before MLA, she spent time ensuring that every single department had contacted the interpreter, arranged payment and logistics, and so on.

While all that work might sound almost impossible to candidates who don’t have to jump through such hoops, the fact is that, for many disabled scholars, the sorts of choices they face around disclosure and negotiating job market accommodations are deeply complex, fraught and, above all, risky. And for none of them is the process easy, uniform or predictable.

Stories like Stephanie’s -- and dilemmas around disclosing a disability or requesting accommodations while on the job market -- are endemic. Almost every academic we know with a disability has a story about accommodations gone wrong, an inaccessible interview situation or a thoughtless ableist comment.

But it doesn’t have to be this way. Many organizations such as the Modern Language Association and the National Council of Teachers of English have general guidelines about disability and the job market. The MLA’s guidelines, for instance, ask departments to make sure that interviews are held in accessible locations and to take steps to create a welcoming environment during the interview. We offer a few additional suggestions to help search committees and hiring units to avoid disability discrimination in the hiring process.

The Job Ad and Interview Invitation

The ad and interview are the first steps and, as a search committee or hiring unit, you should:

• Examine the boilerplate text. Recently, the boilerplate text included in job ads has been changing in sometimes subtly yet often overtly ableist ways to add physical and sensory requirements that rarely have anything to do with the job itself. If you are writing a job ad, read David Perry’s work on this discriminatory language.
• Clearly identify whom applicants should contact to request accommodations. You should also ensure that there is a confidential process by which those accommodations can be negotiated. Search chairs and committees need to inform candidates of this process in advance in the interview letter, and the contact person for negotiating accommodations should not be the chair of the search committee or a faculty member in the department. Instead, a clear channel should be identified through which a candidate can request accommodations that may be needed. A useful model here is the way disability services offices inform faculty of accommodations that need to be made in their classroom without disclosing a student’s disability. The system in place should not require a candidate to open a conversation with a search committee member or department chair that reveals personal health information or specifics about their disability.

The Responsibilities of the Hiring Committee

The hiring committee or unit should be well-versed in issues surrounding interviewing and hiring candidates with disabilities. You should:

• Discuss how to preclude any disability discrimination in determining finalists for positions. That might mean, among other things, anticipating how candidates might move, react or perform differently at different stages of the interview process. You should also consider the significance accorded to certain kinds of performance. For example, a person who learns names quickly may make a good first impression, but that hardly is a prerequisite for success in academic work. These and other tacit social tests should not be part of the hiring discussion.
• Consider how different interview processes might disadvantage certain candidates. Committees should work to minimize any disadvantages interviewees who have different communication, social and interpersonal styles might experience. In such discussions, the focus should be on how hiring units, search committees and job candidates might generally make the hiring process not just more accessible but also more effective. For example, if first-stage interviews have only been conducted via Skype or by telephone as accommodations, committees might consider offering all interviewees in the pool a choice as to their preferred modality. That move avoids signaling one choice as the “typical” interview setting and the other as a “special” accommodation.
• Educate yourselves on how disability disclosure may be (illegally) compelled in conversation. Don’t ask after health conditions or comment on people’s bodies. Don’t assume either that anybody whose physical appearance does not reveal a disability is able-bodied. When possible, give candidates options and information that may make it possible for them to address issues that arise. (For example, candidates with dietary needs may be able to determine if a restaurant’s menu will suit their needs.) Engage in conversations with applicants that make clear when there is flexibility should they have any accommodation requests.
• Be aware of common forms of disability microaggressions. People often act amazed by what a disabled person can do, assume that a disabled person needs help doing other things, ask overly personal questions, compare the candidate’s disability to other forms of disability perceived to be “good” or “bad” and so on. In the context of a job interview, such comments and questions can be especially harmful and difficult to handle.

Setting Up the Interview

• It’s important that disabled candidates -- in fact, all candidates -- receive as much information as possible about the interview location and situation. To that end, you should:
• Communicate as much information as possible about interview settings and procedures. That information might include how the interview will proceed and in what formats. Offer detailed information about buildings and locations where meetings may happen. Are all the buildings wheelchair accessible? Are there accessible restrooms in the building? Will interviewees be asked to move across large campus spaces to get from one meeting to another? When disabled academics don’t have full information about the spaces in which they may be giving a job talk, teaching a class or conducting a meeting, they may not know whether accommodations are, in fact, needed, or how to effectively craft or adapt their delivery and presentation.
• Offer applicants choices. Where possible, we encourage committees to offer interviewees some choices. What technologies and resources will they have available or need to use for their job talk or teaching demonstration? What kind of food will be offered? When might they have opportunities for physical and mental breaks? Will there be an office available to them or a room where they will have privacy? Can they choose when something like a public talk will take place in the day? Can they choose where to sit if they are being interviewed or met by an entire department? These may seem like insignificant choices, but they could allow candidates to meet medical and other needs throughout the process.

Finally, we want to emphasize that the culture of academe itself contributes to disability discrimination. The current neoliberal climate for higher education puts pressure on all academics to be ever more flexible and adaptable. In such an environment, many highly qualified academics may fear that requesting any kind of accommodation might be interpreted as inability to perform, leading them to take their chances without the accommodations that have enabled their success. To ensure that faculty members can request and receive the accommodations they need, committees should openly indicate that access and accommodation are on their radar and proactively signal awareness of disability as important to diversity.

We hope our suggestions will encourage departmentwide and institutional conversations that can build awareness and promote accessible practices while avoiding disability discrimination. Our recommendations can be read, applied, circulated and expanded upon in a very practical way as we head into hiring season. Is your department hiring? Send this article to the search chair and start the conversation now.

About the Author

Jay Dolmage is associate professor of English at the University of Waterloo, and Stephanie L. Kerschbaum is associate professor of English at the University of Delaware. They are both committed to addressing forms of institutional ableism and challenging disability discrimination through their research and scholarly activism.

An Undergraduate Perspective on Recovery

Written by Krishna Udaiwal

In the winter semester of my second year undergrad for philosophy/biology major, I underwent a period of uncontrolled pressure and a breaking point leading to severe depression & social anxiety, as well as cancelling the entire semester before the exams. It was a horrible experience, one which I wouldn’t prescribe to my worst enemies. During the worst of it, there was a breakdown event, loss of interest, severe self-deprecation and quarantine-like isolation. Fortunately, I took the seemingly irrational, but courageous, step to book an appointment with a doctor. Unfortunately, it was over 3 weeks after the initial month of agonizing despair, where hounding social anxiety tried to convince me to cancel the appointment (luckily, I hated using the phone or going outside even more). My decision wasn’t irrational and was the best course of action possible. It was the lowest consecutive time for me, where hearsay cases of micromanaging students ‘faking’ mental health conditions for advantage/grades (in my opinion displaced competitiveness from instructors) and my own lack of self-confidence/ineptitude initially deferred me from making that appointment. When learning of diseases & conditions the first lesson is to never self-diagnose, which is equally true for self-un-diagnosing mental health; you inherently cannot make an accurate judgment. It is essential to speak with a trustworthy source.

Once I spoke to the doctor (or General Practitioner, GP, in mental health lingo) it was obvious to them I needed medical help due to physical & mental signs, although some may not present any signs at all. The signs at my stage were tremors (without any stimulants), inability to look directly at someone, muffled speech, inability to focus or calm myself (these are self-observations post facto). GPs are, as they ought be, limited in declaring specific diagnosis & treatments in a single visit (for long-term diagnoses) as there may be false-positive cases (like hearsay cases) as mentioned before. As such, I was referred to a psychiatrist for in-depth analysis of my condition. For the immediate alleviation of my symptoms, I was conveyor-ed through a passive regiment of steps to recovery including counsellor visits to mitigate immediate risk and the psychiatrist diagnosis for long-term specific severity analysis. In addition, on-going appointments with my GP were booked immediately to ensure my condition did not break me off from seeking help, as very likely. Lastly, I was scheduled to speak with an academic counsellor to contemplate my options regarding my semester (they also immediately understood the gravity of my condition and weren’t intrusive, likely being used to such). Further medical treatments were thereafter discussed with the GP in consequent talks.

My GP was closely linked with the university healthcare network, so a passive & systematic approach was in-place to handle my situation. I could only hope to have a similar regiment should I have approached another unlinked GP, where an active search for information would be left up to the distressed student. Very likely, the student may have a better chance by breaking down the issue into personal rehabilitation & academic recovery.

Personal rehabilitation must necessarily take precedence, as the self-development requires a ready mind, which mental health issues take away. Self-development is necessary & core to studying at University. For my preservation, the actions undertaken were recurring GP appointments, counsellor visits, psychiatrist diagnosis and an appointment with the academic counsellor. The first three were part of personal rehabilitation and I would like to briefly summarize why they were necessary. Recurring GP appointments are, concurrent with the counsellor & psychiatrist appointments, for making the overall decisions in regards to personal rehabilitation options from mental health diagnoses. The treatment options usually include cognitive/speech therapy and medication. With each mental health disorder (anorexia, OCD, depression, etc) there are a multitude of different possibilities, so cognitive therapy and/or medication may work better alone or in combination. The psychiatrist is a specialized doctor who has the training and knowledge to accurately make mental health diagnoses, and to a much greater extent than a GP. Thus, GPs seek a psychiatrist’s diagnosis & recommendations, to determine if cognitive therapy and/or medication may be best. Any treatment prescribed depends on the patient’s approval, where patients may be against medication in some cases. In the case of depression, various medications target different neurotransmitters against potential chemical imbalance. Unfortunately, as causes vary and understanding is lacking, non-chemical imbalance causing depression leads to failed treatment by medication, off-putting many patients due to side-effects. Often, the timeframe towards making a diagnosis may be long, therefore a counsellor is needed to relieve pressure and defuse immediate thoughts of self-harm. A counsellor however is not a doctor nor is allowed to diagnose or prescribe therapies/medications to patients, but is very helpful towards the ongoing recovery. In summary, all three are usually needed for higher chances of rehabilitation.

Regarding academic recovery, it depends on your faculty, where different options may be present including cancelling the semester, deferring the exam (& shifting weight all to the exam), or continuing under variable accommodations discussed as per need. Unfortunately, my perspective is limited, as described previously, to what my academic counsellor allowed. I would not expect much creativity from academic counsellors however, as personal experiences & interactions highlight that they aren’t allowed to do much for undergrads anymore, more so within larger faculties.

Lastly, I want to mention during therapy, I learned that ‘suicidal thoughts weren’t normally present’ in healthy individuals. After partial results from treatment, it was apparently true. In addition, the rate of self-loathing thoughts decreased exponentially, as well as their severity, to metaphoric levels between bully-laughed at within a class of students to taking a vacation-nap on an isolated beach. Sure, the isolated beach may lead to some anxiety of unknown lurkers away from the beachfront, but only to such an amount that probability rules in relaxation. Since the hazardous time, I have also experienced that those vile thoughts can be relieved from socializing with trusted compatriots, which may be lacked within the isolated student. The academic environment where learning is secondary to undergrad hierarchy (GPA -> grants, graduate programs, competitive jobs, self-confidence to seek help/opportunities from instructors) reinforces that notion for introverts. After all, it is random chance that guides forming a friendship between two individuals.

I sincerely hope, if you are undergoing suicidal thoughts, you will talk to someone you can trust or a telephone helpline. Please don’t speak to former abusers, whom you have a history with no matter how optimistic. If you feel self-deprecating, seek a volunteer organization where people appreciate you so you can regain some of your spirit, this being my method towards personal well-being post-therapy. If you’re in a temporary crisis mode, or over-stressed, change your objectives to personal well-being immediately! An assignment or test can be deferred or re-weighted, but a breakdown has lasting consequences. You are not the first to be in crisis, and the faculty must accommodate.

If you feel of no consequence, let me know and I can try to brainwas—I mean encourage you towards some social causes I believe could use additional help (after some semblance of recovery of course). For instance, international agriculture, medical aid, food miles, local communities, cycling and botany.

 About the Author

Krishna Udaiwal, BSc, affected 2nd year of undergrad, dealing with the complications one at a time. Still impassioned & always reading on molecular life of plants and miRNA, aiming for MSc. Promoting science communication on Twitter, and always happy to help peers.

Developing Disability Cultural Competence

Written by Rosemarie Garland-Thomson 

Here’s my advice for people with disabilities so they can come out and flourish in the professional environment. Our ultimate goal is to develop disability cultural proficiency. This begins with disability cultural competence, which is learning how to live effectively as a person with disabilities, not just living as a disabled person trying to become non-disabled. Competence moves toward proficiency as one carries out living with a disability over time and working toward achieving a high quality of life while living with a disability.

Developing disability cultural competence begins with identifying openly as a person with disabilities. Cultivate dignity and authority as a person with disabilities. Enter into organizations and communities that offer support, resources, groups, and gathering opportunities for people with disabilities. Find like-minded colleagues and friends who have disabilities.

As a person who identifies as disabled, know your rights, protections, opportunities, information, culture, history, and communities that can support your flourishing as a disabled person. Learn about requesting accommodations in your workplace, accessing resources and information, and getting physical access. Go to the disability resource center or office of disability services and register as a disabled person so you can request accommodations and know what services and technologies are available to you in the workplace. It should be that office, not your supervisor with whom you discuss your access and accommodation needs. You should not disclose to your supervisors your medical diagnosis, but rather focus on the accommodations you require to carry out workplace expectations. And especially, your supervisors should not be deciding whether or not to grant you accommodations for your disabilities.

Learn to use public resources and supportive structures for people with disabilities. Consider accessible reduced entrance fees for people with disabilities, transportation options, and research how to get proper documentation and procedures for other benefits for disabled people in public space venues.

Most important is to know and use the rights, benefits, and protections provided in the Americans with Disabilities Act (ADA) or your national and local codes and policies for assuring disability equity and nondiscrimination. Go to the ADA website. Read the United Nations Convention on the Rights of People with Disabilities (UNCRPD) if your country has adopted the treaty. Find out about its implementation in your employment and public environment.

In short: know your communities; know your rights; know your access needs; know your accessible technology.

 About the Author

Rosemarie Garland-Thomson is Professor of English and bioethics at Emory University, where her fields of study are disability studies, American literature and culture, bioethics, and feminist theory. Her work develops the field of critical disability studies in the health humanities, broadly understood, to bring forward disability access, inclusion, and identity to communities inside and outside of the academy. She is the author of Staring: How We Look and several other books. Her current book project is Habitable Worlds: Toward a Disability Bioethics.

Why I'm unhappy with "Imposter Syndrome"

Written by The Questioning Aspie 

The author has kindly given us permission to re-post this article from her own website.  The original can be found here:

https://thequestioningaspie.wordpress.com/2016/08/17/why-im-unhappy-with-imposter-syndrome/

So, I may have mentioned that this blog is likely to be a pile of contradictions – and that I might end up changing my mind, or refining ideas about things as I go along.

Well, this is one of those times …

I wrote a blog recently about how I feel that my autism diagnosis makes having confidence in my ability to do my PhD really hard (it’s here if you’d like to take a look). In the post, I mentioned how frequently the term “Imposter Syndrome” was used to describe how often people don’t feel like they ‘fit in’ in academia – that they don’t feel good enough. I tried to explain how having an autism diagnosis, with all that this involves, makes this even more tricky.

Well, my blog was picked up and retweeted by Susan Oman, who is researching wellbeing, including in relation to PhD experiences (you can check out her work here). What was particularly interesting was that in retweeting the blog link, the phrase that Susan picked up on was “I feel like an imposter, but not just that, I feel like an autistic imposter.”

And this is really how it felt to me when I wrote it – like all PhD students experience ‘imposter syndrome’ but being autistic makes this even more of a problem.

So why am I questioning this now?

Well, since I wrote the blog, I’ve been thinking about, and speaking to others about how the notion of ‘imposter syndrome’ actually works, and it occurs to me that the phrase, and what it implies, might not be helping.

What I mean by this is that I had been thinking of ‘imposter syndrome’ as something that affects individual PhD students – and that my individual experience of autism meant that my version of ‘imposter syndrome’ was different/worse/whatever than that of others. Well, the thing is that I do still think this might be the case to an extent – and I don’t think that those who aren’t autistic can understand what it’s like, or can know about it. I do still feel that, but in the past that’s made me quite protective of it, and quite “parochial” (I guess) about the specialness of autism and of autistic experiences.

I didn’t want it to be lumped together with other types of individual experience because how could others possibly know about autism? (Which was my individual experience, and the overriding cause of my ‘imposter syndrome’). So it shut off my thinking about other types of individual experience – people who experience ‘imposter syndrome’ because they are trying to do PhDs and balance childcare commitments, because they have come to academia via a ‘non traditional route’, because they are older than the ‘typical postgraduate’ – or all the other hundreds of thousands of ways that people can feel that they don’t fit in with the model of what a ‘proper PhD student’ should be.

It set me apart from them because the term locates ‘imposter syndrome’ in the individual. It sets it up as an individual ‘problem’ for the individual to overcome.

But I’m not happy with that. Because locating the issue within the individual makes it into a ‘personal’ struggle and creates some kind of hierarchy (“my experience is worse than yours because I have autism” or “your experience is worse than mine because you’re from a Working Class background”). It also has the potential to locate the cause of the trouble in individuals – individual supervisors, individual departments. And this in itself is something that makes raising these issues very problematic for those of us who actually have good relationships with supervisors or with our departments. Indeed, this concern makes it feel troubling for me writing this now, because it feels like it would be so easy to infer from my attempts to absolve myself of any individual ‘blame’ for feeling like an ‘imposter’, that I am attempting to lay the’ blame’ on other individuals. But it’s absolutely not that. I have a really great supervisor and I like the department I’m in. The issue is a far deeper cultural one than that, and I think it goes beyond individuals and is historically and culturally rooted.

So I think that this individualisation of ‘imposter syndrome’ lets the wider systems and structures that lead people to feel that they don’t have a place within academia ‘off the hook’. And really, seriously, if this phenomenon is so widespread, across so many different types of student, different institutions, different academic disciplines – then maybe, just maybe the problem is not an individual ‘syndrome’ but a structural issue. Maybe the focus for change needs to be on the concepts and practices, the systems that are creating the conditions for people to feel like outsiders in a place where they have earned the right to be.

And I don’t feel that talking about ‘imposter syndrome’ really gets us to a place where that is our focus for change.

I don’t pretend to have definitive answers for change, but I do want to be part of something that makes change happen – that makes academia a more inclusive place to be, so that those of us who are ‘non mainstream’ can make meaningful, recognised contributions in a way that does not push us to the brink of breaking, or beyond.

My reasons for this are clear and unashamedly partisan – as an autistic woman, I feel that I need academia. I need to be able to go beyond my own personal experiences and understand how the world works around me. I need to learn, and I love to teach. I also feel that I have something to contribute. I’ve worked really hard to get where I am, and so many people have helped me along the way. But being part of a community means you have a responsibility to it, and to help to shape it, and that’s what I’m trying to do from my autistic perspective.

So the one thing that I feel like I can offer at this point is the suggestion that maybe we should reconsider the language of ‘imposter syndrome’ and begin to talk about something that locates the problem outside of individuals so that we can begin to work within and change a system that actually makes the majority of us feel like ‘imposters’ at some point. Maybe we need to shift our focus much more firmly to ‘hostile spaces’ or ‘hostile cultures’ in the PhD experience and in academia more widely (of which the PhD is a formative part). Because that’s where I think change needs to happen.

 About the Author

The author is an autistic woman, studying and working in academia.  She has lived and worked in spaces where the pursuit of equality and social justice are presented as ‘given’ priorities – in some university environments, in work and at the kitchen tables of family and friends.  She cares personally, deeply and passionately about equality for autistic people. Personal experience of hurt, stigma and troubled identity have led her to try with all of the resources at her disposal to construct a life that works to shield other autistic people from those experiences.

Coming back to work after a long illness

Written by Raul Pacheco-Vega

Raul has kindly given us permission to re-post this article from his own website. The original can be found here:

Coming-back-to-work-after-a-long-illness

If you followed my Twitter feed in the past couple of weeks you’ll know that I fell really ill right after my two weeks of fieldwork in Madrid. My family doctor says it was a combined influenza plus overexhaustion plus almost-pneumonia kind of illness, and he got me on a two-week course of antibiotics (one week of injections and one week of pills). I am barely finished with the antibiotics and have started feeling like a human again. The first week was terrible. I had to sleep 24 hours in a row, for two days in a row.

I learned a few things these past two weeks. The first one is that some people will not understand that being ill is not a choice, and that my main focus is, and should be on getting better, not finishing a chapter/paper/article. I think it is not worth working with someone who doesn’t understand the human aspects of academia. I don’t work weekends. I don’t work holidays. I don’t work when I am sick.If that doesn’t work for you, then I don’t want to work with you.

The second thing I learned is that I should trust my doctor when he says that I need to recharge my batteries and to choose my activities wisely. He said “you will have energy to do ONE thing per day. ONE. So, be wise about which activity you do each day while you recover”. That’s exactly what I did. For example, on Wednesday, I chose to promote the Bachelor of Public Policy program in Leon, where my parents live. It was exhausting and I needed to just keel over and sleep for an hour afterwards. On Tuesday, I chose to attend an important meeting with my CIDE colleagues. On Thursday, I chose to attend a meeting with our students. I didn’t worry about doing anything else. I only had energy to do ONE thing and I did it well. And then I went back to sleep.

The third thing I learned is that I should avoid forcing myself to do anything, particularly work, while I’m convalescent. Contrary to what many people may think, I have a very fragile physique. I have severe allergies (alcohol and lactose, just to start), and my immune system has been compromised since I was a child. I’ve had to take care of myself since I was very little, and while the past few years I was able to avoid falling gravely ill, this 2016 seems to have taken a toll on me way too early, and thus I need to rest even more, as my Spring semester is actually quite busy.

The fourth thing I learned is that I should only gradually come back to do my activities, instead of trying to Get Everything Done As Soon As I Feel Remotely Healthy. I have been doing one, two small things in addition to one big thing every day, and I feel much better.

And the fifth thing, which probably should be the first, is a reminder of something I already knew: no academic accolades are worth your health and your life. No matter how many papers you are supposed to publish per year, how many conferences, your health is and should be first.

About the Author

Raul is an Assistant Professor in the Public Administration Division of the Centre for Economic Research and Teaching (Centro de Investigacion y Docencia Economicas, CIDE, AC) based out of CIDE Region Centro in Aguascalientes, Mexico. His research lies at the intersection of space, public policy, environment and society. He is primarily interested in understanding the factors that contribute to (or hinder) cooperation in natural resource governance.

Metrics of Productivity

Written by Wanda Diaz Merced

During the month of September 2015, I was invited to an inclusion summit by the American Astronomical Society (AAS).  On my way to the summit I took a shared shuttle ride.  A very nice and talkative couple shared the journey with me.  Their destination was their house and mine the AAS office in Washington DC. Of course, we chatted all the time. I love chatting!

The lady introduced herself as a member of staff at the Fulbright Commission. We chatted and laughed all the way. The conversation reached a point where she mentioned her various trips to a country in Africa, to which I replied "I have been there many times too!".  That led me to explain why and to talk about my academic research.  It was very good to hear the “how do you do it?” question right after I told them about my work.

When we got to that point, being unemployed myself, I spoke about how some people’s disabilities lead them to make grammatical mistakes in their resumes, essays and in job application forms that are often not user centered.  I also spoke of technology like screen readers, which despite being helpful, do not prevent us from making mistakes that may lead to incomplete applications or unattached required documents leaving our applications destined for the rejection pile.

I had the same challenge when doing my PhD.  Because I did not ask for a proofreader, upon turning my thesis in I had a whole chapter inserted into the table of contents and during the viva the examiners asked me why I had not included a conclusion chapter.  I had written it but it never made it into their hands.  Beyond that, my examiners mentioned that paragraphs were repeated and pages were numbered twice among other issues.   Luckily for me, my university took action and paid a proofreader, who helped me to correct all the grammatical mistakes and my examiners understood the situation.

However, what about a recent graduate who has a disability causing the occurrence of grammatical mistakes who cannot pay an editor or someone to proofread or help with the job application process?  What about the mentality in scientific academia in the field of astronomy and computer science (I only know astronomy and computer science) of a productivity metric based on written publications?  What about the fact that people who are disabled are expected to perform like a traditional academic (I still use astronomy and computer science as an example) using the same interfaces and perhaps strategies.  As a blind person I have my own strategies; why do I have to be assessed against the established metrics if I have to complete an application that has been made only for sighted users, when I navigate the application with my ears?    How much more difficult is it to compete fairly for a job when your cv is destined for the rejection pile because a grammatical mistake potentially has more weight than your achievements, or because we just could not deal with the presentation of the job application?

I choose to use sound to analyze my data but I have to present anything I find in the data visually to my peers.  When my collaborators bring data to me no one provides a sound file for me to evaluate the data as a peer.  I have also failed to make them aware that I use sound to analyze my data because my performance is at its highest.  They provide a chart.  It is true that the chart may be embossed so that I can use touch to “read” it but in my case having access to the data behind the charts allows me to hear it and do a more thorough evaluation of possible features that may be significant.

I humbly think that while academia is affected by these sorts of inequalities, some are at a disadvantage.  There is no malice; it happens unwittingly but to me this is equivalent to suffer a death by a hundred paper cuts.  At the same time I believe firmly that evaluation metrics have to change to establish a heterogeneous environment in academia, that better awareness will decrease the bias of review boards and that we will be able to level the playing field.  I do not underestimate the effort this will take.  This is a situation that affects all people with disabilities in academia, those applying for post-docs and anyone with a disability who is job hunting.   This is robbing people with disabilities from equal opportunities to display our talents and dignified, meaningful work.  Anyone may develop a disability at any time.  Academics with and without disabilities from every background should unite and work towards leveling the playing field.  People with disabilities do things with our bodies that the able-bodied person has never thought of; if we are allowed to participate as equals, a new type of academia will emerge with people exploring, discovering and employing innovative coping strategies the able-bodied would never think of. 

About the Author

Wanda is a Computer Scientist and Astronomer with a PhD from the University of Glasgow in Scotland.  She is now affiliated to the Office of Astronomy for Development located at the South African Astronomical Observatory in Cape Town.