Categories
All
Archives |
Back to Blog
Late-diagnosis10/30/2021 I was diagnosed with ADHD in my second year of university (I had already completed a foundation and first year at another institute). My university was extremely helpful and supportive from the start. One of my lecturers, who was also my tutor, was diagnosed late with ADHD; so, they were able to help me understand the process and find the help I needed. After I was diagnosed, my university immediately implemented support networks for me, and I truly don't think I would have managed without them. My grades increased after this support was implemented. I couldn't have wished for any more from a university. Thank you to Amy Redsull for sharing her story.
26 Comments
Read More
Back to Blog
Assumptions10/30/2021 My biggest problems were sensory processing disorders and motor dyspraxia. I had to get a doctor's script for sunglasses and earplugs, but I got accommodations that they couldn't get out of. Earplugs weren't a problem, but sunglasses made me look like a creep and I only used them when I absolutely had to. I also got a quiet room for test taking. Motor dyspraxia is a motor learning disability, and people see that I'm clumsy and not very smart with my hands and feet, but they assume that I'm not very smart generally. Most people in public assume that I'm slow, and some people are shocked that I'm smart enough to talk! I would get these teachers who would assume that I was slow or the r-word, and then I'd be one of the smartest ones in class. If for no other reason, it was the fact that I read my textbooks as soon as I got them. I can't write; so, I never take notes in class and I'd catch hell for that. I have an awesome visual memory as long as I see the blackboard. I can remember it; I don't need notes. The teacher would try and make an example of me, "Well, here is this idiot that didn't take notes and isn't paying attention," cuz I wouldn't necessarily be looking at them, but I was certainly listening. I don't always look people in the eye, but I can't always pay attention to what's going on because of the sensory processing disorders. Everything's always loud and grabs my attention. And then the teacher picks on me and asks me questions, and I'll get them all right. They get pissed off. I had a Pascal programming class, though I'd already been programming in Pascal since I was 10 or 11 years old. The teacher decided to pick on me and asked me in front of the whole lecture hall what the ASCII value for the character zero was. I got it right; it's 48. I had to go to his office and explain to him after class that I wasn't smarter than him at programming. I just new more than that class. Thank God I saved all my tests and paperwork because he flunked me. And I went to the dean of that computer science school and got my "A." I had some other teachers, especially my speech teacher, help me cuz I was dyspraxic. Moving your mouth involves motor control; so, I have dyspraxia as a speech disorder as well. She was very good to me. It's funny that it was a rehab teacher that picked on me for being slow and for not getting into groups, and they actually had Autism and Asperger's. I took some assistive technology classes of theirs, and they picked on me and, just like the other teachers, flunked me. I saved all my papers and went to the dean. He was embarrassed as hell. In general, it really made teachers mad that this obvious idiot that everybody thinks is slow was one of the smarter ones in the class if they would just take some time to see past my poor movements and speech. They did their best to stick it to me when I answered questions they weren't expecting me to answer, or I got a good grade on a test when they were going to make an example of me. I'm a very good reader and visual learner. I read about 10 to 20 pages per minute, depending on how much work and problem solving is on the page. I may not be able to talk and speak as well as they'd like to hear it expressed in class, but I can read it and understand it and they just couldn't see past my poor speech. They just had to show their authoritarianism and make an ass of themselves and I save my papers so I can show them to the dean. There were seven times in college that I had to go to the dean, but that was never the case in electrical engineering classes because I don't think there was any normal or typical people there. Thank you to Matt Weatherford for sharing his story.
Back to Blog
My Pledge10/29/2021 I found out my disability during OT school. When I found out, it was a month after I failed my first level 2. I didn't have much time to decide on what I should do because it was also 3 days before I began my second year of OT school. In my situation, knowing that I can't fail another level 2 fieldwork, I chose to disclose my disability to my faculty. I also chose to disclose to someone I think I can get along with whenever I attended OT conferences. Finally, I chose to disclose on social media. In spite of my best efforts, it took me a year to find someone with the same disability as me in OT. And how I amazingly found that occupational therapist was a miracle- as it was through a Facebook vent, where a caregiver responded to my post. We connected 2-3 weeks later and had became friends since. After we connected, that led me to make a pledge- "If I ever heard of someone with my disability needing a mentor after I become an OTR, I would not hesitate to help that person. After all, I was lucky to have a year to find someone with my disability. However, not everyone has a year to locate such support. So, I will do what I can to pay it forward." Thank you so much to Bill Wong for sharing his story.
Back to Blog
Effects of Ableism10/29/2021 Content Warning: suicidal ideation I'm Autistic and have spent 15 years in higher education. I received a Bachelor of Science in Physics in 2005 before spending a year pursuing graduate studies in physics. After that I obtained a Bachelor of Arts in Philosophy followed by a PhD in Philosophy that I finished in late 2019. I primarily want to talk about my experience of ableism in academia. While I experienced ableism throughout my time in academia, it was much worse during my PhD. Consequently, I will focus my discussion there. I began my PhD in September of 2012 at the University of Western Ontario. Getting involved in the social life of university at Western proved to be significantly more difficult than it had been at other universities. My social quirks were more accepted when I was studying physics and I had little time for socializing during my BA due to a long commute. I found myself effectively ostracized at Western despite efforts to include myself in the life of the philosophy department. This ostracism was due to widespread social rules that aren't designed to include neurodivergent people as well as poor bodymind literacy on the part of people with no understanding of neurodivergent differences in socializing. I dealt with the occasional instance of overt ableism (e.g. being yelled at for displaying an Autistic trait, being gas-lit and/or victim-blamed when I tried to talk about ableist issues). However, that was a very small part of my experience. The ostracism and the harm that came with it were due to the constant bombardment of everyday instances of unintentional ableism resulting from ignorance. People can be held responsible for harm they didn't intend, they can be held responsible for their ignorance, and they can be held responsible for both. Ignorance or lack of intent can absolve one of responsibility, but it doesn't always. And ableism or discrimination more generally, is one area where it often is reasonable to hold one responsible for unintentional harm caused, in full or in part, by ignorance. One of the primary issues that many Autistic people face is extreme social exclusion. As with most forms of discrimination, the exclusion is often unintentional. Part of what that means is that no one has a conscious problem with my participation in the life of the philosophy department, but they unconsciously put various barriers in the way that keep me at a distance. Kip Williams, a leading expert on ostracism, has identified four types of ostracism. One involves physical isolation, one social isolation, and the other two are forms of verbal ostracism. I experienced the first two in the philosophy department at Western. The physical isolation came from people forgetting, repeatedly, to communicate information to me about events that resulted in my missing many opportunities. The social isolation came from being ignored even when present. This manifested in various ways: lack of eye contact, tuning me out as if my voice was background noise, and no comments directed at me. Because the ostracism was unintentional, there are a number of exceptions that arise when a situation is such that a person couldn’t get away with unconsciously ignoring me (e.g. none of the example issues I mentioned occur in one-on-one encounters between myself and someone else). And it wasn’t merely students, but also professors. Conferences, reading groups, coffee breaks held by the Rotman Institute of Philosophy of Science (located at Western), dinners with invited speakers, or various department social gatherings are the situations where the issues were most pronounced. It made it extremely difficult to do anything besides what I specifically required to do to complete the PhD program. Being an outcast was very damaging both psychologically and scholastically. Psychologically, I have to deal with anxiety, depression, loneliness, suicidal ideation, and complex PTSD. Just maintaining my currently poor mental health requires that I stay in London rather than move elsewhere where I would have to overcome significant barriers to develop a social support system. I’m not currently at risk of suicide, but I’m very certain that this would change rapidly if I left London. My chances of finding a job in London are awful even under the best of circumstances. In additional to the barriers I face simply as someone on the spectrum (statistics about Autistic employment put my chances of finding full-time employment as low as 15%), there’s both a significant lack of work in areas suited to my talents as well as the issue that many of the suitable jobs for my talents are unadvertised positions to be discovered through networking. Improving my mental health is extremely important in order to allow me to search for work elsewhere, but that is also tied partly to my financial stability (or lack thereof). In addition, my lack of opportunity to participate in department life has reduced my employability in academia. I couldn’t develop ideas I had that might have led to papers. I couldn’t network with faculty of other universities to make connections that could help me find work. The psychological issues also reduced the amount of work I could do beyond satisfying program requirements and prevented me from participating in training programs offered by the university that would have improved my CV. A common issue with discrimination in higher education is that they put various barriers in your way while you're a student, which in turn affect the “quality” of your CV, which in turn becomes a reason they can use to reject job applications. This kind of adding insult to injury seems to be pretty common. And it's particularly frustrating, to me, in higher education where the people putting the barriers in the way are the same ones doing the hiring. An employer outside academia might reasonably be able to say that it's not their responsibility to take responsibility for the barriers a job applicant may have faced in university or college that negatively impacted their CV. I don't think university or college faculty can say the same. Finally, my PTSD seems to be very much tied to the fact that I was studying philosophy of physics and, to some extent, philosophy of science more broadly. I became very interested in philosophy of disability and feminist philosophy after discovering them and am trying to pursue those areas as much as possible while surviving on social assistance. Despite my education, my employment prospects, both in academia and elsewhere, are significantly worse than people would likely believe. And my experience at Western is a big part of why they are as terrible as they are. The possibility of never finding full-time employment is also higher than most people would likely believe, as is the chance that I’ll eventually die by suicide. I provided the philosophy department a few opportunities to do something about the situation. The first was only two years after I first started at Western. The American Philosophical Association's Committee on the Status of Women visited the department to do a climate review in September of 2014. Despite the name they were open to examining climate issues regarding members of other marginalized groups as well. I had only recently discovered I was Autistic at that time and wasn't comfortable revealing that. Instead, I framed my issues in terms of introversion as I saw some overlap between ways to make academic environments more introvert friendly and ways to make them more friendly for Autistic people. And introversion seemed to be a much safer thing to talk about with, for example, the positive response Susan Cain' s book “Quiet” had received. The final report the committee provided did include some simple, and easily implementable, recommendations that would have made my experience at Western much better had they been implemented. The second opportunity I provided was in October of 2017. By this time I was open about being Autistic as well as very disappointed that the mere knowledge that they had an Autistic PhD student hadn't motivated anyone to think about examining and addressing anti-Autistic barriers in the department. Concerns about directly raising issues, particularly regarding all too common forms of retaliation, had me hoping, as futile as that might have been, that some of the issues I was facing would be dealt with pro-actively by a philosophy department that I was still hoping actually was interested in welcoming disabled people. But eventually I did arrange a meeting with the head of the department (who was also the head of the climate committee at the time) in October of 2017. Of course, nothing came from that meeting. No investigation into what could be done. It was basically just told “I don't know what to do so we're not going to do anything.” This was extremely frustrating in part because the Accessibility for Ontarians with Disabilities Act (AODA) requires a certain amount of proactive identification and removal of barriers and because it requires that complaints involve investigation into possible solutions. Although I don't know how AODA applies specifically to individual departments within a university. The final opportunity was provided in September of 2020. I sent a letter to the head of the department which was passed on to the Dean of Arts. While they expressed concern about my ongoing social isolation and reduced employment opportunities, they only directed me to resources through Western and the London community to which I already have access. That is, they did not acknowledge in any way the harm caused by my experience at Western or acknowledge that the philosophy department bears any responsibility to remedy or address the situation in some way. This was a year after I had graduated. It was my last attempt to get the department to privately recognize and take responsibility for the harm they've caused me before making my experience public. They've had seven years since my anonymous initial complaint, four years since my first explicit complaint, and one year since my last explicit complaint. I have shown an absurd amount of patience and the philosophy department at Western has made it clear that they won't make an effort to address ableism in the department unless forced to. Finally, because there are subfields of philosophy such as philosophy of disability and philosophy of race. One way to determine whether a large philosophy department, such as that at Western, values diversity is to see if they ever post faculty positions specifically for these subfields. The faculty at Western is large enough that there's no good reason for them not to have more diversity in the areas of philosophy its faculty members study. There's also no good reason not to favour disabled people when hiring someone for a philosophy of disability position. Personal experience of disability is incredibly valuable for such a position. It's something that should be considered a significant benefit. A benefit that a non-disabled philosopher can't bring to the position no matter what other experience they may have. Thank you to Nathan Moore for sharing his story.
Back to Blog
Fortunate10/28/2021 I've been extremely fortunate to have had all my accommodation needs met in my undergraduate studies, my master's, and now my doctoral studies. At all three universities, connecting with the accessibility office was easy, although getting the required paperwork did take time and money. I'm fortunate to be supported by an amazing partner who has job security; so, I've been able to afford all the paperwork. All of my professors, except for one, have easily accepted my accommodations. That one professor wanted me to negotiate individually with her instead of going through accessibility services. I also had one course where no one volunteered to be a note-taker. Beyond those small issues, I've been very fortunate to have my needs met. My doctoral program, in particular, was very accommodating when I required extra time to rewrite my comprehensive exam papers. When I read on Twitter how many students don't have their accessibility needs met or their accommodations filled, it made me realize how lucky I've been. For students interested in Canadian universities, I am happy to say that the University of Guelph, University of Toronto, and Queen's University have all made sure that I've had the accommodations I need, as long as I've had the appropriate paperwork. I do realize that having the right paperwork can be a barrier for many.
Back to Blog
I'm Just Tired10/27/2021 It's hard to know where to start. I've spent the last decade feeling like I've been walking a tightrope, while people are constantly trying to push me off. If I don't just bear with it and instead push back, it increases. And now that I have long COVID, I think they will finally succeed in pushing me out. It's been a weird journey. I am Autistic, have ADHD, and POTS, as well as a few other things. I'm also the first in my family to go to college. I love working with data and helping people figure out how to use it best to solve their research problems. I realized early on it might not be a good idea to disclose my disabilities, especially when other students would relay to me that a professor had broken confidence and told them and further encouraged the students to not interact with me. Even if I didn't disclose, the gist of it would come out via accommodations for classes. And when it came up that I was trying to go to grad school, multiple professors told me that I wasn't cut out for it because of my accommodations. "In the real world, you have to work on a schedule and people will not wait for you." "This slowness will drag your cohort down." Even my mentor in a diversity fellowship told me in regard to requesting accommodations for the GRE that eventually I would need to, "cut that sh!t out." In a very madlad mood, or perhaps someone with very little self-worth, I still became a grad student in the department with the most push back, because I desperately wanted to learn more about the subject. A think with Autism, you learn how to mask a lot of traits people find off-putting. For me, this happened mostly subconsciously over time. In a similar fashion, I found ways to get professors to stop trying to push me out. I said yes to almost every opportunity that came my way. I applied for outside funding, fellowships, grants, anything I could find. Eventually the comments stopped. I was the first to ask for master’s exam accommodations in that program's history. I was also the first to receive an NSF GRFP in the department and was publishing multiple papers a year. They simply didn't know what to make of me anymore. I think a decent amount of my time in the last decade was driven by spite. People kept telling me I wasn't capable. But I also wanted access and desperately wanted to continue to learn. If I'm really honest with myself, I was mostly driven by fear. To keep pushing myself at all hours, I would go to subreddits like AskAcademia, read about students struggling, seeing people slowly pushed out, and would internalize it so I could use that momentum to stay. Even when the professors started to quiet down about me being there, life continued to be a struggle. I tried following all the advice given, pull yourself up by your bootstraps, but medical issues I happened to mention (if ever) were dismissed as not a big deal or that I was exaggerating. I almost never took off time even when I was in constant pain, except when I got pneumonia in my first term of grad school and strep throat at the end of that year. I remember making $11,000 a year, with a contract that forbid us from taking outside work, and also didn't provide us with insurance. I looked into Medicaid and since I made so little money, I qualified for immediate enrollment instead of having to wait until the fall. A safety net! So, it was disheartening to learn that several of my prescriptions were not covered due to "age restrictions". When I brought up that I had 15 years of documentation of them working, they told me, "If it really means that much to you, you'll have to take them to court." That was one of only a handful of times I broke down and cried in that period as I realized just how broken everything was. Pulling myself up by my bootstraps only got me so far, because the safety nets were full of holes. So, I took out more unsubsidized student loans to cover private insurance. Even after the $3,000 in premiums, it was still $500+ a month in medication, copays, and other therapy that simply wasn't covered. I became the free food person, finding every opportunity just so I could stave off more debt. For a while, it seemed like this struggle payed off in the long run. I got external funding, deferred it to use as a bargaining chip when applying for PhD programs, and got into a great program that gave me the freedom to study what I wanted. And the insurance was the best I've ever had and probably ever will. It wasn't that there weren't problems, but I finally felt I had more solid footing to manage them. I thought I'd finally made it. Then COVID happened. I got it in March 2020 before the mask mandates and my world slowly started to fall apart. I wouldn't be diagnosed for another 10 months, and in that time, I felt like I was slowly losing my mind. Eventually I became bed-bound. Things became too strained with my advisor, which I understand. I didn't know what was happening to me and my attempts to fix it through exercise only exacerbated things until I was collapsing. Everything I said sounded like an excuse as I desperately tried to grasp why my brain was failing. It became too much and we parted ways. I still wonder if, had I known what was going on and how to fix it, could I have salvaged things? Now I'm facing a possibility of being bed-bound for a long period of time. I'm locked out of the long hauler clinics in my area as I wasn't able to get access to testing in March 2020. At the time, testing was only available if you were hospitalized. With my diagnosis, I was able to get some help to stabilize my health in an attempt to keep working. However, I’m not improving, my doctors are running out of options, and there's no time to get better. I'll lose my fellowship if I leave, as well as my insurance, and I'm less than a year away from finishing my PhD. The disheartening part is now that I'm starting to reach out about postdocs, I'm realizing being bed-bound is a deal breaker for many. It doesn't matter that I am fully computational and can work while lying down. I've published 5 papers in the last 12 months in this state, 3 as primary author. I have helped several different labs during this time, from bed, on methodology that has fundamentally changed how they analyze their data, changed the outcome of their results, and will continue to be used in the future. And I constantly get remarks of how sad they are to lose me from academia, as if it was already decided. It simply feels like thoughts and prayers. There was a tweet the other week from a professor, with a picture of them working remotely from their backyard, talking about how academia is the best job in the world. And when there was some push back that academia could be toxic, the response was that it was a hard job. Only people who could handle and love that hard job should stay. The thing that hurts the most about this is I do love the work I do. I'm ok with it being hard. That's why I went overboard and said yes to so many projects. That's why I published 20 papers in just under 10 years as a student, with 10 of the papers being primary author. That's why I applied to so many funding opportunities and received just over $500,000. I wanted to prove that, yes, I could do it. But I've realized it simply isn't enough. I will finish this PhD. I haven't spent 17 years in college as a first gen student, house cleaning, going to night school part time, slowly crawling my way up to stop a few months before I reach this terminal degree. And I’ve glossed over so many events that pushed other people out and nearly pushed me out. It’s too much to keep reliving them. I guess somehow, despite everything that’s happened, I'm still sad that this is likely the end of my journey in academia. I knew I would likely not be able to become a professor, but I had always hoped I could continue to a postdoc and be a staff scientist. I thought I could continue to help improve analyzing data and help students navigate the crazy process that is academia. I want to push back. I want to stay, I'm just not sure I have the strength anymore. I’m just so tired. Thank you to the anonymous author for sharing their story.
Back to Blog
Wholly Unfit10/27/2021 CW: Mentions of Sexual Assault, medication, and verbal abuse I'm a grad student who didn't get diagnosed with my disabilities until fairly recently, and I did so under extreme duress - it was either that and have a legal right to dubious support, or be forced out of my program. I have ADHD, I'm autistic, and I have joint hypermobility issues which mean I get injured a lot in the course of my work (long field work seasons are rough on both my physical and mental health). I also have complex PTSD, initially from sexual assault, medical trauma, and harassment in my youth, but my doctor assures me that a hostile PhD work environment and abuse from supervisors belong on the list too, now. I'm still in my graduate program, several years in, but my first few years of grad school boiled down to verbal abuse from my advisor (which is a nice way of saying screaming at me for innocuous things like asking to shut a door to minimize background noises, or asking for clarification on comments on some written work or data analysis) and what seemed like every supervisor and mentor I had actively trying to kick me out of the academy. I struggled a lot in my first few years with unspoken expectations I could not possibly have picked up on (autistic), an advisor who responds to clarification questions and social confusion with rage, and an inability to catch up once I started falling behind (ADHD). Things got worse when my role as a teacher meant that I had to go through the mandatory reporting process when a student working closely with me on research was assaulted. This triggered a serious PTSD flare, and despite trying so hard to catch up that I barely slept for months, doing two field research projects while teaching full time, and injuring myself so badly I needed months of physical therapy, I came back in the fall to be told I hadn't done enough over the summer and that they were taking away first authorship on a paper I designed and executed more or less independently, a project that kept me in the lab until 1 in the morning multiple times. Not a single person, not my advisor, not my committee, not senior graduate students, not the graduate mentoring committee, no one... interpreted my struggles as a sign of serious pain and challenges. They all assumed I just wasn't invested, or if I was invested, that I wasn't 'good enough' - and they told me so. I have been told that basic challenges, like taking a little longer with high-executive-function tasks like providing high-quality feedback on written work from students, and basic accommodations like preferring the overhead lights off when working in my own space, wearing headphones to block out distracting noise or closing the door, or asking for advance notice *when feasible* before abrupt changes or tasks I really struggle with, like driving somewhere new, make me wholly unfit for my desired career (teaching and some research at the university level). I've been told I don't seem like I care about my work because I don't emote effusively or smile enough, which is a nice side of sexism to go with the ableism, or because I don't constantly want to go get drinks with people from the department or lose work time to socializing (I constantly having to expend considerable effort to refocus myself after being interrupted for small talk, and it absolutely negatively affects my work productivity). I know what they tell me isn't true - is there any clearer indication of actively loving my field of study than putting myself through systematic soul-crushing attacks on my character to keep pursuing it? I've won awards for outstanding teaching and I get student emails telling me how important it is to have a teacher who is so passionate about her subject who also gets what they're going through and cares about them as people. I'm doing a dissertation chapter that multiple people have told me, now that it's half completed, did not seem feasible or even possible when my PI pitched it to them - and I love it. The pandemic saved me. It sounds awful, I feel awful saying it, but it forced the department to let me work from home (an accommodation I'd previously been refused) and to give me an extension on my comprehensive exam, which they should have done anyway but had been fighting. It gave me time to get from diagnosis to actual treatment and support and begin learning how to navigate a totally different set of challenges than I'd encountered before. This is all so new to me, even though it's also like finally having an explanation for my entire life, and I still don't feel "disabled enough" to participate openly in things like this or to occupy space. I'm not 'out' in my department any more than I'm out about being queer - neither of those parts of me have to be visible, and I tend not to bring them up to people I don't trust. I'm a really private person, and after all that... can you blame me? I'm torn between a desire to be visible for the benefit of my students and as a reminder to the faculty that struggling is not a sign of not caring, and a desire to protect myself and not paint an even bigger target on my back than I already have. I'm still here. I passed comps. I got a few grants, I got through the field season. I won a teaching award on the same day I got prescribed a benzodiazepine for panic attacks in the lab while working on my dissertation research. The personal attacks and yelling continue. I flinch every time my advisor interrupts me to talk. I see a path forward to my PhD now, I see the light ahead, but I hope it isn't another train... and I wish I knew what putting myself through this for another 2-3 years is going to do to me. Thank you to the anonymous author for sharing their story.
Back to Blog
Incapable of Seeing Ableism10/26/2021 I was diagnosed with autism in my undergrad career. It was wonderful to be able to understand myself and my needs and do so in a place where I felt safe. But I was sheltered in undergrad, fortunate enough to have a professor open about being ND. I connected with them more than other students did, not realizing why other students didn’t. And now I continue my journey in higher ed, facing extreme ableism from my PI. I want to make it clear that my PI is a genuinely good person, but is incapable of seeing ableism. PI has done a lot of work to support many minorities, but has never included disability in that work. The safe space poster in our lab is wonderful but does not mention disability. I had hoped that if my PI was willing to openly be supportive of many other minority groups, they would also support the disabled community, but I was wrong. One day, after PI pushed a bit too much, I shared my autism diagnosis (thinking I would be safe). My PI took it well enough, but has openly treated me worse in the time since. I try harder to mask at work and pay the price for it, trapped in a cycle of frustration-days where I don’t mask are worse still. I used to work for a disabled PI and I know how wonderful the environment could be, but I don’t know if I could ever be the one to change it. And it shouldn’t be on me alone to champion disability rights in my work environment when it’s not what I’m paid for. These are things that make me consider leaving science altogether. Thank you to the anonymous author for sharing their story.
|