︎︎︎Back to e.a.r.t.h

Make events accessible:
A disability primer for organizers

by Olivia Dreisinger

Drawings by Sarah Cohen

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.

---

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 

 

---

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.

---

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.

---

our stories

(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.

(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.

---