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Accessibilize your event

Make events accessible:
A disability primer for organizers


by Olivia Dreisinger


Drawings by Sarah Cohen



contents

                                 

  • access-as-practice                     

  • accessibility checklist

  • why access matters              

  • call-out, registration, and forms  

  • transportation/travel accommodations

  • food/beverage                                       

  • event space/building                        

  • how is information presented? 

  • service providers 

  • our stories: anne & cecelia

  • glossary  




access-as-practice


The following guide will outline how to make your events more equitable, inclusive, and accessible to the disability community, keeping in mind all of the intersecting identities that encompass such a group. The information that follows offers a variety of ways you can support disabled people, with a specific focus on events that are held in a higher education setting.

      First, take the time to think about what kind of event you are holding. Is your event an hour-long lecture, a workshop, or a multi-day all-day conference? Plan accordingly. Access isn’t always perfect. What may work for one event might not work for another.  Provide options, be flexible, and be ready to make adjustments at any moment—access needs can be unpredictable. This is what we call access-as-practice.

      We understand that most events are understaffed, underpaid, and run by volunteers. We also recognize that you might not have all of the resources or labour available to check off every box, but we all need to start putting accessibility into the budget.  Accessibility has to become standard practice. Develop relationships with service providers and disability community members to consult on the best use of limited funds and resources.  Start planning, budgeting, and prioritizing access.

      Please be honest about how accessible or inaccessible your event is. Do not claim that your event is accessible to all if it’s not (this can waste people’s time, energy, and even place their health at risk). Be transparent and indicate that you are making steps to not only improve, but prioritize access at your future events. Keep your resources on hand and share what you’ve compiled with your community. Hopefully they’ll also share their resources with you, and accessibilizing your events will become easier and easier.

      As a final gentle reminder, disability is not always visible! Don’t assume that disabled people aren’t at your event. We are here and we want to participate! Unfortunately a lot of the work falls on the disability community to make sure an event is accessible and that our needs are accommodated. Access should be a collective responsibility. By taking steps to accessibilize your event, disabled people can worry less and enjoy your event more. Start inviting disability in to your events.



accessibility checklist



Below is a checklist to get you thinking about accessibility. This list is by no means comprehensive or complete.
Click HERE for a link to a document version of this checklist 



call-out, registration, and forms


☐ Are your website and online forms screen reader accessible (i.e. for blind people, people with low vision, etc.)?

☐ Is there enough time between the call out and acceptance period for people to arrange travel, accommodations, and/or prepare for their presentations stress free?

☐ Is your event free?            

☐ If not, do you offer cost reduced or free ticket options for people accompanied by a support worker or interpreter?

☐ Do you offer tickets on a sliding-scale or pay what you can (PWYC) for low income people?

☐ If there is a sign-up form, is there a section for attendees to request or specify accommodation needs?

☐ Preferred name option (if different than legal name)?

        ☐ Acceptable pronouns?

☐ If ID is necessary for your event, will those checking ID’s be sensitive to attendees not using their legal names?

☐ Is there a form or contact for people to leave their feedback pre- or post-event?

☐ If there are name tags, is there a preferred name option (if different than legal name)?

      ☐ Acceptable pronouns?

☐ Is your accessibility policy clearly laid out on your website and/or event pages?

☐ Does your event page or promotional materials include accessibility infographics or symbols to visually break down what services are offered at your event?

transportation/travel accommodations


☐ Have you provided attendees with transportation options, contact information for people to arrange accessible transportation, or made note of what metro stations or bus routes are accessible?

        ☐ Are there free or cost-reduced bus tickets available?

☐ Is there accessible parking?

        ☐ Is it nearby?

☐ Is it clearly marked?

☐ Is there an accessible drop off area outside the event space?

      ☐ Is it clearly marked?

☐ If guests are travelling to the event, are there accessible hotel/housing rooms available?

      ☐ Are these reserved specifically for people with access needs?






food/beverage



☐ Does your event have food?

      ☐ Is it free, PWYC, or by donation?

    ☐ Do you provide vegetarian, vegan, gluten free, or nut free options?

    ☐ Are these options clearly labelled at the food table?

        ☐ Ingredients of food/dishes provided?

         ☐ Can attendees reserve diet specific meals in advance so they don’t run out?


☐ If your event is serving alcohol, will there be non-alcoholic options or a designated alcohol free zone?

      ☐ Is the zone clearly marked?


☐ If beverages are served, are bendable straws or lightweight cups available?

how is information presented?



☐ Are there content/trigger warnings (CW/TW)?

☐ Are print or digital versions of presentations made available ahead of time to those attending?

        ☐ Are large print options provided (minimum 18pt font, preferably 24pt)?

☐ Are video presentations open or closed captioned?

☐ Are there image descriptions for visuals/media?

☐ Is there real time captioning (like Communication Access Real-time Translation (CART) or TypeWell)?

☐ Are there microphones for your speakers?

☐ Are there breaks between presentations/events/workshops/lectures/etc?

☐ Are there no intentional flashing lights?

☐ Is the event livestreamed?





event space/building


☐ Have you provided attendees with access routes and/or building access maps?

      ☐ Are routes to the building clear from ice, snow, or construction?

☐ Is the building wheelchair accessible (i.e no stairs, ramps, ground level)?

      ☐ Are there automatic doors?

      ☐ Is there an elevator?

☐ Are doorways, hallways, and rooms wide enough for mobility aids to comfortably move through them?     

☐ Are there tripping hazards (i.e. uneven steps, wires, loose carpet?)

☐ Are there accessible bathrooms?

      ☐ Clearly marked?

      ☐ Are they gender neutral?

                        ☐ Clearly marked?


☐ Are the bathrooms scent-free (i.e. no air fresheners, chemical cleaning supplies, scented soaps)?

      ☐ Clearly marked?   

☐ Is the event scent free?

      ☐ Clearly marked?

☐ Is the room maintained at a comfortable temperature?

☐ If your event is primarily a standing event, will alternate seating options be provided?

☐ For seated events, is there reserved seating at the front and/or near exits for people with disabilities?

☐ Is there a reduced stimuli/quiet room or space available for attendees to rest in?

        ☐ Is the room clearly marked?

☐ If the space is lit by strong overhead fluorescents, do you provide alternative lighting options?

☐ Are stim toys encouraged and/or provided

service providers


☐ Have your staff/volunteers undergone anti-oppressive and/or anti-ableist training?

☐ Is there an attendant (or attendants) assigned specifically to handle access needs and requests?

☐ Has the attendant (or attendants) undergone anti-oppressive and/or anti-ableist training?

☐ Is the attendant (or attendants) wearing readily recognizable markers like shirts, vests, or tags so they are easy to locate?

☐ Is sign language interpretation available upon request or with advance notice?

        ☐ ASL?

        ☐ LSQ?

☐ Is Whisper Translation available upon request or with advance notice?

☐ Is childcare and/or family care available?

☐ Are service animal teams welcomed?

☐ If so, is there water available for service animals?

  ☐ Is there a designated service animal relief area?
 



accessibility audit template


Now that we have gone through some access applications, consider taking the time to participate in the Radical Access Mapping Project (RAMP). These free comprehensive accessibility audit templates allow anybody to download and fill out a report vetting how accessible an event space/building/etc is. You can access the form here.



why access matters


Below is an incomplete overview of how people with different barriers to access might use your event space and benefit from a range of access options. Disability also intersects with a range of other identities and privileges like race, class, gender, sexuality, religion, age, and citizenship. Think seriously about these intersections. As you move through this section of the guide, think about what your future accessibility policies and pedagogical practices can look like.  What directions will you take and what work can be done to get there? For now, start by offering flexible ways to give support to disabled, sick, neurodivergent, mad-identified, D/deaf, hard of hearing (HoH), fat, etc people so they can learn and participate equitably at your events.


call-out, registration, and forms



  • Screen reader accessible websites and forms benefit blind people, people with low vision, etc. Provide alternative formats options like Microsoft Word document, accessible pdfs, or accessible web forms. All printed materials should be available in large print versions (minimum 18pt font, but preferably 24pt).

  • Leave enough time between your call for submissions, acceptance period, and conference date to allow people to comfortably arrange accommodation, travel, and/or their presentations. For instance, people might need to apply for travel funding through their university, if they are coming from out of town, or schedule a support worker to travel with them to the event. As well, people with executive dysfunction might need more time to fill out forms, make bookings, and prepare materials for the event. Provide a person to contact to assist with registration, accommodations, travel, access requests, etc.

  • Make event information as transparent and clear as possible. Include a way for people to contact you in case they have questions or need further accommodations. Provide a form where people can indicate if they need specific accommodations (will they be accompanied by a support worker, a service animal, or an interpreter, for instance, and need a free or cost-reduced ticket).

  • Accessible pricing options like cost reduced, sliding scale, or PWYC tickets allow people with different financial situations to come to your event without financially straining them in other areas. No one should be turned away due to lack of funds.

  • Provide a way for guests to contact you with their feedback and criticism. Please listen to their concerns, be open to what they have to say, and make adjustments accordingly. Again, access is not perfect and requires practice and flexibility.

  • For larger events, name tags help people with memory issues and varying processing speeds. By including further options like preferred name and gender affirming pronouns, attendees don’t run the risk of being misgendered or misnamed.

  • Consider using a system for people to signal to other attendees what their level of desired interaction is. This allows neurodivergent people, people with varying energy, sensory or spatial issues, anxiety etc to take control of their personal space. For instance, attendees could wear a coloured badge that visually communicates this information. Green (approach me), yellow (approach me if I know you), or red (don’t approach me at all).  Attendees can change colours at any time. Explain this system to attendees if this is not a common practice at your events (see ASAN’s resource on colour communication badges here).

  • Make sure that your accessibility policies are clearly outlined on your website and event pages. Consider making an accessibility infographic for your events since reading pages of accessibility notes is not always accessible. Click here to access infographics to use at your next event.


transportation/travel accommodations



  • Provide attendees with transportation options, numbers for people to arrange disability friendly transportation, and/or information detailing accessible metro stations or bus routes near the event. Often, attendees are travelling from out of town and don’t know what resources are available to them or what routes are accessible. Again, be transparent. Planning for a trip takes enormous energy and people with varying access needs require as much time and information possible to make necessary arrangements.

  • Hold your event near accessible parking. Often, people with varying energy levels, chronic pain, chronic illness, etc will return to their car to rest safely and comfortably at longer events. Cars can be stocked with diet specific snacks, medication, blankets, etc and act as a controlled environment for some people.

  • Reserve accessible housing, extra meeting rooms or spaces that can be transformed into gender neutral change rooms, scent free spaces, quiet rooms, etc ahead of time for the event. Set these aside for people with varying access needs much like you would reserve parking or seating. Make sure accessible hotel rooms/housing prioritize people with access needs and go to them first.


food/beverage


  • Provide different dietary options. Food is an important part of community gathering, learning, and membership. Low energy and low income people will greatly appreciate not having to expend additional energy or money to find food before, during, or after an event. Providing diet specific options also helps to include people with specific dietary needs. Make sure to set a certain number of diet specific options aside for people who need them so servings don’t run out.  As well, provide a list of ingredients for each dish and display these clearly at the food table or on the menu. Make food security a priority.

  • Alcohol centered events can leave out people with alcohol sensitivities, intolerance, or people recovering and/or living with substance use issues.  Non-alcoholic options and alcohol free zones allow people to still be included in important (often alcohol focused) networking events. Consider decentering alcohol at your events.


event space/building


  • Include an access map of the building and/or route to the building that indicates how a wheelchair user, a person with mobility aids, low vision, varying energy levels, or chronic pain can get to and around the building.  Indicate if there are ramps, elevators, automatic doors, etc. Not only does this allow wheelchair users to attend your event, but a wheelchair accessible building benefits other people too (people who use other mobility aids like canes or crutches, people with varying energy levels, people living with chronic pain, people with low vision, etc).

  • Accessible washrooms allow wheelchair users, people with mobility aids, and more to use the toilet comfortably! Please also do not shame someone for using an accessible washroom if they are not a wheelchair user or do not immediately present as disabled. Keep in mind some people have gastrointestinal issues, need to change their ostomy bag, take their medication, adjust their chest binders, or simply need additional privacy and space to take care of themselves and their business! Consider making your accessible washrooms gender neutral and clearly marking them as such—disability can intersect with many other identities. For instance, support workers may need to come into the washroom with their client and may be a different gender identity than them. Accessible washrooms should also be scent free (i.e. free of air fresheners, chemical cleaning supplies, scented soaps).


  • Make your event spaces scent free or, at the very least, scent reduced. Scented products can cause headaches, migraines, brain fog, rashes, diarrhea, respiratory distress, and/or aggravate other health issues related to asthma, allergies, multiple chemical sensitivities (MCS), etc. They can trigger a variety of health issues, ranging from moderate to severe, and symptoms can last for a long period of time even after the person has left the space. Scented products include (but are not limited to) perfume, cologne, shampoo, conditioner, soap, hairspray or gel, makeup, laundry detergent, fabric softener or lotion. Attendees should also be aware of other scents they carry on them like the smell of smoke. If you claim your event is scent free, also be mindful that rooms are often cleaned by the building cleaning staff with strong chemicals and scented cleaning supplies. Consider contacting building management in advance to ensure that the event space is not cleaned with chemical products around three days prior to the event.

  • Be conscious of the temperature of your event spaces. People with menopause, cancer, autoimmune disorders, and more, experience temperature dysregulation that drains energy fast and is very physically uncomfortable. Have fans in the summer and heat the rooms in the winter to a comfortable temperature. Keep numbers for building management on hand since a lot of rooms don’t have windows that can be opened or thermostats that can be adjusted.

  • Standing events can be a nightmare for some people who have spatial sensitivities, varying energy levels, anxiety, or chronic pain. Consider placing chairs or other seating options at your event for people to safely and comfortably take the time to rest.  

  • Designate seating and/or seating area for disabled people at the front of the event or near exits, make it clear that this seating is reserved for them.  When arranging seating, make sure to leave space between each seat and to make aisles wide enough for people to move around in and be seated comfortably. Standing room is difficult for service dog teams, wheelchairs, and scooters, because unless they get to the front of the crowd, it is very hard to see.

  • Make the room flexible to support people with different barriers. People with low vision need to sit close to the speaker. If there is an ASL interpreter on stage, people using that service must also be close to the front. Other people may need to situate themselves near an electrical outlet to charge their devices, or near exits to come and go when needed, without being disruptive.  People who are anxious, neurodivergent, or have chronic pain may need to stand, walk around, stretch, stim/use stim devices at the back of the room.  Again, provide options.

  • Aggressive noise, lights, and smells can cause migraines, headaches, sensory overload, and drain energy quickly. Socializing can be also be overwhelming for neurodivergent people trying to navigate confusing social cues, unwanted touching, or interactions. Having a reduced stimuli/quiet room allows attendees to retreat and recharge during your event. Mark the room clearly.

  • Harsh overhead fluorescent lights can cause headaches or migraines. Consider holding your event in a room with large windows that provide bright natural light.  

  • Stim devices/toys are great for neurodivergent people, people with anxiety, varying attention spans, etc to feel calm, redirect their energy, and focus during events. Consider investing in some stim devices/toys and putting them out at events for others to use (like tangle toys, spikey squeeze balls, squish toys, bubble wrap toys, fidget cubes, etc).


how is information presented?


  • At the beginning of your event, inform participants, in clear and specific language, of the services provided. Speak slowly. Where are accessible washrooms, elevators, and/or doors located? Is there a quiet room? Are ASL/LSQ services offered? Is there food and, if so, what kind? Is the space scent free? Open with a statement to explain your commitment to increasing accessibility and reducing barriers to access. For multi-day conferences, provide information packets clearly outlining the daily schedules, access services offered, and contact information for event organizers.

  • Content/trigger warnings (CW/TW) allow people with trauma to come into the conversation and participate without putting their mental health at risk.  Content/trigger warnings are a disability issue, not a discomfort issue.

  • Having printed copies of papers and presentations readily available for guests benefits not only D/deaf or HoH people, but people with fatigue, illness, brain injuries, ADHD that makes it difficult processing, remembering, or focusing on oral/aural presentations. These should also be made available before the event. Large print versions should be on hand (minimum 18pt font, but preferably 24pt).

  • Closed, open, and real time captioning (like CART or TypeWell) benefits more than just D/deaf or HoH people. Captioning also benefits people who have difficulty processing oral/aural information, varying energy levels, attention spans, and/or focus. These services also benefit people whose primary language(s) is different from the language being spoken. Academic panels can also be inaccessible to those unfamiliar with names or concepts being discussed—captioning can help mediate this gap. Start accessibilizing and deinstitutionalizing language.

  • Make sure there are microphones for all speakers. Microphones benefit HoH people, people sitting at the back, etc. Microphones also put less strain on speakers who themselves may have anxiety, varying energy levels, difficulty processing information, etc.

  • Scheduling breaks between presentations/events/workshops/lectures/etc benefits people with varying energy levels, attention spans, focus, or thresholds for being around people or being in a new environment. 

  • Some people need to prioritize what they spend their energy on, and showing up physically to an event can mean not buying groceries, eating properly, or being there for family or friends. Livestreaming allows people with varying energy levels, people who are chronically ill, or people who are unable to arrange care or transportation, for instance, to attend your events remotely. Try to rethink what participation and attendance means and what this can look like. Livestreaming also allows low income people to participate. Livestreams can easily be set up through social media sites like Facebook, YouTube, or Instagram. All you need is a smartphone or a laptop with a webcam. Consider uploading these videos to YouTube or a similar platform after the event. Caption your videos, if you have the resources to do so.


service providers



  • Appoint an attendant (or attendants) to assist people with access requests.  Make sure the attendant has received anti-oppressive and/or anti-ableist training. The last thing a disabled person wants is for their access needs to be invalidated by event staff. If an attendee asks for assistance, directly help them and don’t ask questions. Attendants should also wear readily recognizable markers like shirts, vests, or tags so they are easy to locate.

  • Provide language support to attendees who might need assistance understanding the language spoken at the event. This helps to remove language barriers for people who have recently arrived to the country, visiting, are not fluent in the language, etc.

  • Please compensate service providers. Interpreters, for example, have to put in quite a few extra hours of work to prep ahead of time in order to interpret an event (i.e. academic panels, presentations and talks, plays, poetry, etc).  Book service providers well in advance.

  • Service animals/dogs do not exclusively benefit blind people, people with low vision, etc. Service dog handlers might have PTSD, be diabetic, have narcolepsy, etc., and their service animals might be trained to stop destructive behaviour, alert handlers to migraines, perform deep pressure therapy (DPT), and more. Please be aware of service dog etiquette. Do not ask a service dog handler about the legitimacy of their disability. As well, do not try to interact with a service dog when it is working. Read up on service dog policies in your area. Provide water and a relief area for service dogs.




our stories



Anne Tastad, undergraduate student


(CW discussion of multiple chronic illnesses, disordered eating, structural ableism)

My name is Anne and I am chronically ill. I live with several distinct yet interconnected mental and physical illnesses. Specifically, I have Anorexia Nervosa, Obsessive Compulsive Disorder, and Irritable Bowel Syndrome.

      Living with these ailments has impacted every aspect of my day-to- day existence, including my academic career. I am now nearing completion of a bachelor’s degree in English Literature yet, due to the interruptions caused by poor mental and physical health, along with numerous hospitalizations, it has taken me ten years to reach this point. Over the course of the past decade, I have witnessed many of my fellow students come and go. The people I started school with have long since graduated and moved on to postgraduate education and rewarding careers, and it has been discouraging and isolating to be left behind by my able-bodied and able-minded peers. However, I have also witnessed many encouraging changes in academia’s attitude toward physical and mental illness on campus: greater efforts are being made to support students like me, by promoting awareness and providing access and inclusion for sick and/or disabled students. This gives me hope, yet there is still much room for improvement, and I hope that by sharing my perspective I can help promote such improvements.

      As a chronically ill student I face certain unique challenges. For instance, both Anorexia and IBS incorporate a serious physiological dimension which can contribute to low energy levels and bodily exhaustion. Working with limited physical strength means that attending seminars, lectures, and other meetings on campus is particularly difficult, and sometimes out of the question, especially if I have other important needs to address, such as buying groceries, filling prescriptions, or meeting with doctors and psychiatrists. I may not have the energy to do all these things in one day, and this results in a kind of “exhaustion economy,” in which I am forced to “budget” my energy levels and physical activity; my limited physical resources determine the level of participation which is “affordable” for me.

      Anxiety and stress impose similar limitations and budgeting of resources. For instance, I have particularly severe OCD, and while this disorder is often parodied in society (with jokes about obsessive tidying, light-switch flicking, and pen straightening in abundance) it is actually a fairly debilitating illness. For me, being outdoors or in other public spaces is difficult, as is physical contact, which is hard to avoid outside the home. A cramped bus or classroom may become intolerable, and the effort to control my anxiety levels whilst sitting through a lecture has often proved so emotionally/psychologically draining that I have had to cancel remaining lectures, seminars, or meetings with professors in order to return home and practice healthy stress management. Such daily interruptions due to stress are extremely inconvenient for me, but if I don’t listen to my emotional warning signals, I run the risk of spiralling out of control and resorting to unhealthy or destructive coping behaviours. Once again, I find myself forced to choose between the activities I can realistically participate in without harming myself.

      These illnesses have clearly made my student life difficult. Early in my undergraduate career I was unaware that any support for students like me existed. I am happy to say that, at this point, my university has developed a department which keeps my medical and psychiatry documentation on file and, in recognition of my needs, liaisons with professors to provide me with things like extensions on exams and assignments. However, this is essentially a bare-minimum service and is by no means perfect. As is perhaps clear by now, one of my central challenges is attending lectures and so forth in person. Though I may be excused for absenteeism after the fact, the university has not developed other, more proactive ways of providing me with equal access to activities which are difficult for me to attend. For instance, none of my seminars or lectures are live-streamed or recorded, nor are special lectures from visiting professors. Accessibility tools like this would enable students like me to participate remotely in academic events which we would otherwise be excluded from due to factors like physical exhaustion and extreme anxiety.

      As an aspiring academic, I look ahead to graduate and doctorate work, as well as eventual teaching positions, and I worry that similar limits to access will persist at these higher levels of education. For example, will the economy of physical and mental exhaustion within which I am forced to operate prevent me from participating in conferences, where I would have the chance to network with peers and expand the horizons of my research? I do not want to miss out on these opportunities, yet my ability to participate, access resources, and succeed will ultimately depend upon the extent to which academic institutions are restructured to recognize and accommodate the needs of the chronically ill. As it stands, people like me struggle to navigate a system designed to support only the able-bodied and neurotypical.
     
Though I cannot speak for students with a different set of needs, in my own experience as a chronically ill person on campus, I know that I would greatly benefit if events were recorded and/or live-streamed. Course loads and conferences which require participants to be on campus all day are intimidating and sometimes impossible for people with mobility issues, limited physical stamina, and severe anxiety. Investing in technology and new practices that would ensure everyone can participate and feel included in academic discourse would contribute to livelier academic communities.




Cecilia, graduate student


(CW discussion of multiple chronic illnesses, disordered eating, structural ableism, barriers to health resources, academic ableism)

As I open an empty Word document to write this, I have three different white noise generators playing, loudly; my ceiling fan is on its highest setting despite the fact that I also have a space heater on its highest setting, partly because it makes up for the breeze generated by the fan in the middle of winter, and partly because it simply makes more noise. Still, I can hear my tinnitus: also known as a “ringing in the ear”, although mine is more like a cacophony of a constantly fluctuating tea kettle, a radiator hiss, television static, a pure “eeeee”, ten crickets chirping (this tone is actually calming), and I’m too afraid to press my ears shut and listen for more noises because I know my brain would find them, and that they would stick.

      I am a graduate student, and I am chronically ill. I am reluctant to admit this, because I often feel like my inability to perform in the same way as many of my peers is simply due to inadequacies on my part, that I’m just not cut out for it, or that I’m actually making my illness up.

      I am also reluctant to list the conditions I have been diagnosed with, because my experience with chronic illness actually led me to switch fields entirely from Cultural Studies to History of Medicine in order to better understand what exactly was happening to me, why the medical establishment wasn’t helping me, and why I felt so often like I was making everything up (I’m not). I have the following diagnoses (in fact, they show up on a bolded list given to the many doctors I have seen every time I go to the clinic at my university’s health center): Polycystic Ovarian Syndrome, Irritable Bowel Syndrome, Endometriosis, Temporomandibular Joint Disorder, Benign Fasciculation Syndrome, Generalized Anxiety Disorder, Panic Disorder, Anorexia Nervosa, Bulimia Nervosa, Binge Eating Disorder, Major Depressive Disorder, Bipolar Disorder (Type II), Borderline Personality Disorder, Post Traumatic Stress Disorder, Complex Post Traumatic Stress Disorder, Obsessive Compulsive Disorder, Dissociative Disorder Not Otherwise Specified. My tinnitus, perhaps my most intrusive and disruptive symptom, has no physical or localizable cause. I have experienced psychosis mostly presenting as a series of paranoid delusions with auditory hallucinations.

      Obviously, I cannot bring my noise generators with me to classes, workshops, conferences, or other academic events. Nor can I predict when my body will fall into a dissociative panic attack, when colors, words, and sounds will feel foreign, when my auditory and visual perception will contort around me as if someone has given me drugs, when my legs will tingle and go numb, when my body will feel outside of itself, when I will feel like I’m walking through water. I don’t know when I will have a flare up of endometriosis pain, which literally stops me in my tracks.

      Trying to fully participate in academia is very difficult for me. I was recently accepted into a PhD program, for which I attended the admitted students visiting day. This was a free trip to a sunny place in the middle of winter so that I could meet with my future mentors and colleagues, and see the place I might spend the next five to seven years of my life. However, traveling is extremely difficult for me, and traveling for academic purposes, such as conferences and workshops, is often rushed and uncomfortable. Travel often triggers pain flare ups, sometimes almost preventing me from me from making flights on time. Sleeping in unfamiliar and unpredictable places triggers my insomnia which only exacerbates my other symptoms, partly because I have to scan the room for sounds and my tinnitus is often louder in rooms I haven’t fully habituated to yet (this is a result of the combination of the “physical” tinnitus and my debilitating OCD symptoms). Furthermore, sitting in on seminars and meeting with future colleagues in small, quiet rooms can be painful. Sometimes the tinnitus is so loud that it gives me headaches, feels like a wet saw cutting through my brain. When it gets this bad, I cannot concentrate on lectures, speakers at conferences, or anyone else who might be talking to me in the room. Sometimes, this triggers an autonomic nervous response and I begin to panic, at which point I have to leave the room. Then, I tell myself I don’t belong in academia, filling up with shame. Additionally, my “Benign Fasciculation Syndrome” further distracts me from paying attention at conferences or in meetings: the syndrome basically means I have a lot of muscle twitches. It’s a pretty abject syndrome. In fact, the muscle right above my left knee has been twitching 24/7 for over a month now, and in order for me not to feel it, I have to bend my legs in very specific ways which causes pain and weakness. My physical symptoms along with my OCD and Panic Disorder make it nearly impossible to predict whether I will be able to even participate in academic events I would love to be fully present and engaged at.

      But the worst part about all of this is the lack of both physical and mental health resources that I have encountered throughout both of my MA degrees. I truly believe that if I had access to consistent therapy, my physical symptoms along with the debilitating stress, fear, anxiety, and shame that go with them, would slowly begin to dissipate and I would be able to enjoy the work that I love again. As an international student, I can only access doctors at the clinic at my university. This means I wait longer for and have less access to initial appointments, follow-ups, and specialists. Despite having a diagnosis of both PCOS and Endometriosis, it took eight months to get referred to a gynecologist because they denied my request twice before it was accepted. My endometriosis pain could be managed easily with as little as 10 prescription pain pills a year, but very few doctors believe the amount of pain that I experience or that ibuprofen doesn’t help. I have been waiting on an MRI that I imagine will never happen for three months. I was referred to an audiologist by a university clinic doctor, and when I arrived at my appointment was told that I would have to pay 350$ for my appointment. I left, because as a graduate student at my university with the minimum funding package, I make well below the poverty line (and to add to the obvious stress of academic life, there are direct connections between poverty and sickness). There is no counseling or therapy service available to me through my university, and the two different types of insurance that cover up to only 1500$ worth of psychotherapy expenses per year in my graduate insurance are so labyrinthine to navigate I had to have someone else do this for me. More often than not, it’s not worth it to even go to the doctor, so my health has been slowly deteriorating, if only because of the stress of knowing I don’t have access to proper care.

      I think that in general, our attitudes towards mental and physical health are in need of serious overhaul, and that is why I am fighting my own body to stay in academia and write about it. I don’t think “raising awareness” alone will do much for the many disabled students in academia or for the people who were never given a chance to begin with. I have been extremely lucky with supervisors who were not only understanding and accommodating, but also open about their own struggles with disability, poverty, and unconventional backgrounds (for academics). I owe them so much gratitude because without their support I would not have survived this long. We need to fight for material access to care, compensation, and accommodation within our profession so that being sick or crazy implies strength in overcoming adversity instead of a lack of ability.



glossary



Able-bodied: Not physically disabled.


Able-bodied privilege: The numerous benefits that able-bodied people receive (i.e. accessing built environments, navigating government services, acquiring job security). Other types of disability-related privilege to consider include thin privilege, neurotypical privilege, and passing privilege.


Ableism: Systemic oppression of disabled people. A form of prejudice, stereotyping, or discrimination against disabled people. Ableism may intersect with other forms of oppression like sexism, racism, classism, and ageism.


Accessibility: The ability to access a particular product, device, service, or environment. Creating accessible environments for people with disabilities can look like wheelchair ramps, scent free spaces, sign-language interpreters, reduced stimuli spaces, live-streaming or chat services, and inclusive washrooms.

Access statement: A statement that invites participants to think about how to use and engage with the space around them. As well, access statements outline the accessibility services provided, as certain practices may be unfamiliar to participants (ie. the usage of trigger warnings, CART, or quiet rooms).


Accommodation: Particular types of modifications needed for an environment to be accessible.


Chronic illness: A health condition or disease that lasts for 3 months or longer. Can be episodic, progressive, in remission, etc.


Chronic pain: A persistent pain lasting for 3 months or longer. The pain can worsen with time or intermittently reoccur. The pain can worsen with time, intermittently reoccur, etc


Compulsory able-bodiedness: A system that (re)produces the able body, privileging able-bodied identities, perspectives, and experiences.


Content warning (CW): Like trigger warnings, content warnings are statements placed at the beginning of a piece of writing, video, photograph, etc flagging the content as potentially upsetting to readers or viewers. Content warnings flag material that (typically) is less harmful or more broad.
(CW: violence, misgendering).


Crip time: Crip time can be defined as the flexibility needed in schedules and in mindsets in order to disrupt expectations surrounding compulsory able-bodiedness (i.e. “normative expectations of pace”). Some bodies need more time to arrive somewhere, more time to do something, or more sick time and days off from work. Other bodies are out of time, running behind schedule, or waiting for a period of time to end (i.e. a flare up, a migraine).  Crips in crip time are messy, nonlinear, and complex.


Executive functioning: A set of neurological processes that aid in self-management and self-regulation. Executive function depends on three types of interrelated brain function: working memory, mental flexibility, and self-control. Together, these functions help us to regulate emotions, organize and plan, sustain or shift attention, and manage tasks and priorities.


Horizontal hostility: Horizontal hostility is the tension between marginalized communities when members from these groups reinforce or create their own oppressive hierarchies or modes of discrimination. This tension may make dialogue across other marginalized communities difficult. Lesbians might dislike transgender people, feminists might look down on sex workers, or a disabled person might be vocally racist.


Identity-first language: The disability is placed first, as the individual’s identity is inseparable from their disability. There are different communities that prefer identity-first language over person-first language. For instance, autistic and D/deaf people typically prefer identity-first language.


Neurodivergent (ND): Neurologically atypical. A person is neurodivergent if their neurological development/state are considered atypical to the dominant society they live in (i.e. people with developmental disorders or mental illness). Not synonymous with autistic.


Neurotypical (NT): Neurologically typical. A person is neurotypical if their neurological development/state are considered “normal” to the dominant society they live in. Not synonymous with non-autistic.


Non-visible disability: A disability that is not marked visibly on the body. Examples of non-visible disabilities include Lupus, schizophrenia, and diabetes. Never disclose someone else’s non-visible disability without their consent.


Passing privilege: Passing privilege is when people with non-visible disabilities benefit from passing as nondisabled. For instance, non-visibly disabled people have the privilege of choosing when and where to come out as disabled or choosing when to pass. However, passing as able-bodied may also bring about many disadvantages. For instance, since people with non-visible disabilities do not necessarily look sick or disabled, claiming services or resources may be more difficult or met with suspicion (ie at school or in the workplace). Non-visibly disabled people may then feel pressure to prove or disclose their disability in order to access these services or resources or to even belong to the disability community.


Person-first language: The person comes before their disability/impairment, separating the person from their disability. There are different communities and individuals that prefer person-first language over identity-first language.


Sanism: Similar to ableism, sanism is a form of prejudice, stereotyping, or discrimination against people with mental illness.


Sensory overload: Some people may be sensitive to different kinds of sensory information like lights, sounds, smells, sights, and textures. An overload of sensory information can result in stress, anxiety, emotional dysregulation, and physical pain. Loud music, wearing certain materials, and bright lights are just a few examples of sensory sensitivities.


Spoon Theory: Coined by Christine Miserandino, Spoon Theory is a system measuring energy levels. Spoons are used to represent units of energy that a person has in the day. For people living with disability, chronic illness, or chronic pain, spoons deplete faster than non-disabled people doing the same tasks. Activities or general day-to-day tasks can be incredibly energy consuming and cost spoons (i.e. bathing, getting dressed, or going out for dinner). Spoons are replenished with rest—although this is not the case for everyone.


Stimming: Short for self-stimulatory behaviour, stimming is a repetitive body behaviour or movement common to autistic people. Common forms of stimming include—but are not limited to—hand flapping, making vocal sounds, and rocking. Stimming may help increase a person’s ability to remain calm and reduce sensory overloads, emotional dysregulation, anxiety and panic attacks as well as increase focus, attention span, and tolerance of difficult sensory situations.


Trigger warning (TW): Like content warnings, trigger warnings are statements placed at the beginning of a piece of writing, video, photograph, etc flagging the content as potentially upsetting to readers or viewers. Trigger warnings flag material that (typically) is more harmful or specific.
(TW: discussions of rape).


Visible disability: A disability that is marked visibly on the body. The use of assistive devices like a wheelchair, cane, or service animal may also serve as visible markers of disability.


Whisper Translation: A whisper interpreter/translator sits directly beside the person (or persons) needing to understand the language spoken at the event. The interpreter whispers what is being said into their ear. This service allows people who are not speakers of/fluent in the presenter's language to still participate in the event.


This resource was first published in 2018 and was last updated January 18th, 2020
For a document version of this resource click ︎here