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Betrayal10/26/2021 Close to the end of my program, my health was getting much worse with no clarity as to why. I found myself struggling in school, so I visited a faculty counselor to help me try to get through the last chunk of my program and graduate as smoothly and quickly as possible. Part of these visits was explaining why I was having difficulty, and that my experiences had led to me being disillusioned with the program. During this time, a classmate I worked with in a group project plagiarized their portion of the work. I found myself taking the blame for this, and discovered the same counselor, who I believed I had gone to in confidence, was using my health information as "evidence" as to why I must be ultimately responsible. I ended up having to pay to repeat the entire course, as well as a doubling-down of symptoms. If it hadn't been for the support of my family, I would not have graduated. Thank you to the anonymous author for sharing their story.
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Waste of Resources10/26/2021 ...this is difficult for me to talk about. I'm chronically ill. I recently graduated with my PhD after 8 years in graduate school. I thought the best way to receive accommodations during graduate school would be to talk to the disabled students office–I was wrong. As a graduate student, because I was technically an employee, they could only help with accommodations for classes (which I ended up not needing accommodations for). I went to the office in charge of disabled employees, and they told me that because I was a trainee, I was technically a student, and that they couldn't help me with accommodations for lab. I spoke to my PI about it. He said it was fine, and I was so relieved! However, as graduate school went on, I saw that he didn't actually have faith in me. I was taken off my project and it was given to someone else. He allotted less time and energy towards my new projects than other people's. My second year, I was experiencing a flare-up of one of my medical conditions that was so severe, I had to be hospitalized. While I was in the hospital, he told one of my labmates that I was a waste of resources. I thought about quitting, but I needed my health insurance. I spoke with the ombud, and they weren't helpful either–if they escalated, there was no way of keeping my issues with him confidential, given that I was only one of three graduate students in his lab. I feared retaliation. I kept pushing myself to continue with accommodations and often overworked myself. In some ways, the response to the COVID-19 pandemic helped me. The accommodations that I had wanted (the ability to work from home) were suddenly routine for everyone. This was also embittering because it showed that these accommodations were always possible. They just didn't want to give them to me. I did, eventually, finish my research, and defended during the pandemic. I started my postdoc a few weeks ago. I can't bring myself to ask my new PI about accommodations. I guess I'm just going to do my best to get by without them. I know I'm still burnt out from graduate school, and that this will probably just continue the burn-out. But once again, I need the health insurance that's afforded by my position to continue to function. I just hope I can keep scraping by and that someday things will get better but I'm very tired. Thank you to the anonymous author for sharing their story.
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Not disabled enough?10/26/2021 I'm currently on my second try at finishing undergrad after having to drop out due to my accommodations not being met. Not surprisingly, I might have to drop out again. On my first attempt at college, my autoimmune disorder developed in ways I had never dealt with and at the time that typically required me being very close to a bathroom, meds, ice packs and heating pads. I had a doctor who had no idea what to do for me aside from suggesting accommodations to attend class remotely. I brought those accommodations to my University's disability centre and I was told that we could request extra absences and the availability of notes and PowerPoints, but it was ultimately up to professors. I followed their instructions with accepting the "good enough" accommodations and submitted them to my professors.
But then I had one professor outright deny any accommodations beyond a note-taker in class. They said if I couldn't come to class, I wouldn't get my points for participation and attendance which was 30% of the grade. I went back to the centre and they basically told me there was nothing they could do. I received my first ever F in a class despite doing all the work and tests because I couldn't be there in person. This became a common theme that led me to unenroll so I wouldn't end up flunking out. I decided to re-enrol when I saw that the pandemic made everything remote, the exact accommodation I had tried to fight for in 2017. Got straight A's with my accomodations being met. Now it's fall of 2021 and I'm being pushed back to in-person and I already have had to miss some days. The student disability centre says I'm not disabled enough to qualify for continued remote accommodations, so I'm sitting in packed classrooms hoping I don't catch it. I've heard through the grapevine less than 100 students here have been granted remote accommodations through a rigorous process of jumping through hoops. The final say comes from a committee of people who are not doctors, don't know me, don't speak to me or my doctor who signed in agreement that I need this, simply look at what evidence I could build. Fingers crossed I can get through one last academic year like this because once I'm done I'm never coming back to the sad excuse for a school that loves to pride itself on being diverse and welcoming.
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Minority Stress10/25/2021 This week, we’re talking about disability-related minority stress and highlighting the disabled academics advancing this area of research. What is minority stress? Minority stress is defined as chronic stress experienced by members of stigmatized minority groups due to marginalization, objectification, discrimination, and internalized stigma among others. Minority stress has been linked to both mental and physical health disparities, including hypertension, diabetes, anxiety, substance abuse, depression, suicidality, and adverse birth outcomes. Given the history of minority stress theories, research to date has predominantly focused on minority stress experienced by racial and ethnic minorities and gender and sexual minorities. Recent work led by disabled researchers Dr. Monique Botha, Dr. Richard Keller, and Dr. Kristin Conover has advanced our understanding of disability-related minority stress. In 2020, Dr. Monique Botha and colleagues explored the utility of the minority stress model for understanding autistic individuals' experiences with mental health. Dr. Botha and colleagues found that internal and external stressors, including discrimination, internalized stigma, and concealment, predicted higher levels of psychological distress and lower levels of wellbeing, regardless of exposure to general stressful life events. Full Article: Extending the Minority Stress Model to Understand Mental Health Problems Experienced by the Autistic Population Article Link: https://journals.sagepub.com/doi/pdf/10.1177/2156869318804297 In 2010, Dr. Richard Keller and Dr. Corinne Galgay published their qualitative study on microaggressive experiences of disabled people. To explore the nature of disability microaggressions and their consequences, the researchers conducted semi-structured interviews with a small group of people with disabilities. From the interviews, they outlined eight main domains in their taxonomy of microaggressions (denial of identity, denial of privacy, helplessness, secondary gain, spread effect, patronization, second-class citizenship, desexualization) and two auxiliary domains (exoticization and spiritual intervention). Full Article: Microaggressive experiences of people with disabilities Article Link: http://psycnet.apa.org/record/2011-12742-011 Building on the work of Drs. Keller and Galgay, Dr. Kristin Conover and colleagues developed a measure, the Ableist Microaggressions Scale, to assess external stressors that contribute to minority stress. Their three-study research project established that four related, but distinct, factors contribute to experiences of disability-specific microaggressions: Helplessness, Minimization, Denial of Personhood, and Otherization. Full Article: Development and validation of the Ableist Microaggressions Scale Article Link: https://journals.sagepub.com/doi/abs/10.1177/0011000017715317 The formative research studies led by Drs. Botha, Keller, and Conover have numerous implications for future research and policy, as well as in the training and practice of health providers. When we think of minority stress most may think of this in relation to being Black, Latinx, or any person of color in a society driven by white privilege. Disability-related minority stress does not exist in isolation of other minority stressors, but it compounds them and creates space where it feels like being othered within minority groups that have had to be strong to survive. The associations of weakness and disability bring about a certain taboo within minority groups where disability may be seen more like a crisis in faith. Being proud to be disabled and proud to be Black, for example, could be seen as an oxymoron. Yet, it can and does exist. When Dr. Moya Bailey and Dr. Izetta Mobley wrote their work on the Black Feminist Disability framework, this also speaks to three different forms of minority stress that can all exist together at the same time. This framework calls “scholars of African American and Black Studies, Women’s, Gender, and Sexuality Studies, and Disability Studies to have a flexible and useful methodology through which to consider the historical, social, cultural, political, and economic reverberations of disability.” This work extends beyond the audience of scholars, but to each of us who work through the minority stress and the fears of being othered to understand “What does Disability mean to me as a Black woman?”
Bailey and Mobley synthesize the critical nature of the establishment of the ADA and intersectionality in this way “Both Crenshaw’s articulation of intersectionality and the signing of ADA serve as pivotal interventions that illuminate the oppressive structures that impact women of color and disabled people, respectively. Crenshaw noted the interplay between race and gender in violence against Black women; we take up intersectionality to argue that a single-issue approach to disability fosters the same pitfalls. Our intervention requires intersectionality to explicitly attend to disability. It is our contention that racism, sexism, and ableism share a eugenic impulse that needs to be uncovered and felled.” To exist as a Black Disabled woman, many of us are still viewed in light of the “myth suggests that Black women are uniquely strong, able to endure pain, and surmount otherwise difficult obstacles because of their innate tenacity. Black women are disallowed disability and their survival is depoliticized.” This is a part of the catalyst of minority stress at the intersection of blackness and being a woman. You can read more about the Black feminist disability framework here: https://journals.sagepub.com/doi/full/10.1177/0891243218801523 Minority stress can look like something different at each intersection, but it is important to note however we identify, whether it is Black, Latinx, LGBTQIA+, Disabled or anything else, that there is nothing inherently stressful about being any of those things. Fundamental attribution error is a term used by social psychologists to describe the cognitive bias of assuming that a person's actions and/or situation in life depend on what "kind" of person that person is rather than on the social and environmental forces that influence the person. Fundamental attribution error is clear in popular use of the term “disabilty,” as people born in bodies that are “different” than the majority are inherently disabled. Rather, society literally disables people who are "different" than the characteristics of the power majority. It is critical to talk about "disabled" as a verb and act of violence by the ableist majority. This distinction is SUPER important in mental health treatment because we realistically will not be able to convince the majority with any ease that they need to see their existence differently. So having the right language to make sense of the reality of our experiences is a powerful way to reduce stress and healing—as we change the world. The minority stress can even come from within the disability community itself, it is harder in a way to move through disability advocacy spaces dominated by white disability advocates. #DisabilityTooWhite is critical to how we conceive of the intersectionality of not only feeling othered as a Disabled person of color by an ableist majority, but also by those in the disability community. Health inequity will impact the lives of Disabled people of color more than white disabled people. We thank Jade for talking about how most service dog handlers are white and the inequities that exist in service dog handlers.
Acceptance of disability being dynamic, visible, invisible, mental and/or physical, but all are valid in the Disability community. Acceptance also speaks to taking steps to dismantle our internalized ableism and everything that our cultures have told us or have led us to believe about disability. If you have a mental or physical disability, you deserve to have the accommodations you need in the classroom to help you thrive. You have the right to call yourself disabled as disability exists on a spectrum whether you are formally diagnosed or not.
Compassion as a disability identity can seem out of place at first with marginalized identities, but you can be proud of all that you are. Disability doesn’t equal weakness and disability pride is real. #MyDisabilityMadeMeGoodAt is a powerful hashtag where many of us through out #DisabilityTwitter talk about the good things that their disabilities have taught them. ADHD can make a person good at being creative. Fibromyalgia can help a person by not pushing themselves too much and signaling when they have. Community like #DisabilityTwitter, @BlackDisability, etc when medical racism and trauma happens that you are never alone. Being a person of color in a medical setting does make each of us more vulnerable to medical trauma and racism, but it can be easier to manage emotionally to know that you have a community. A community is also great for when you are newly diagnosed with #ADHD for example since late diagnosis is so prevalent as people of color, but if you ask for advice and tag #AskADHD so many people will reply and interact to help you. Health inequities exist and in community, we can help each other thrive. Empathy for those who are just beginning a disability journey and helping each other to come to a place of peace in the midst of disability. It is also important to understand that being disabled does not mean you cannot be an ally, each of us can be an ally to a community that we are not a part of. Those who are sighted as allies to those who are not sighted in our community and each of us who are sighted without communication based disabilities should be adding alt text to not exclude anyone from this community. White disabled people are allies to Disabled people of color as our experiences can be so different and there could be a different version of privilege or power that a white disability advocate may have to help out marginalized disability communities. Streamlining because we may be able to do everything, but for our health we don’t have to do everything. Being #InvisibleDisabilitiesWeek, it is important to know that we don’t have to act nondisabled just because that is what is seen on the outside. Being #DEHEM21, we don’t have to compromise our #AcademicMentalHealth to meet norms set by academia that never respected health needs. It is okay to have days where you are more productive and days where you are less productive. Be kind to yourself as barriers in society may not often be kind to us existing as disabled people. Safety because it is critical to find safe places to rest, safe friends to talk to that understand disability, safe allies who will help support you in bad times, safe medical providers that you can trust and safety within yourself to let your disability stop you when it is needed. Minority stressors can make it hard to feel safe in your life especially when disability compounds with being a person of color. We each can create safe spaces for ourselves to thrive.
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What disability support?10/25/2021 During my undergraduate degree, it felt as if I was constantly struggling against disability services at the university to be able to receive the same education as everyone else. I have a physical disability, so my support needs academically were very limited, and mostly mobility based. In this way I was lucky because I was mostly able to accommodate for myself. If you made a request to disability support, the email communications would drag out for weeks and months so that you would grow tired of arguing with them over the same issue repeatedly.
Often, my lecturers would resolve the issues to the best of their abilities, which I really appreciated, but it wasn't their job to do so. I know from experience that many departments at the university were frustrated with the disability service for its lack of apparent interest in supporting disabled students. This was the experience of many other disabled students, and the disabled students society felt frustrated with the university, and the student union's lack of regard for disabled students. We would often start campaigns, write emails, make others aware of the issues we were facing as a group of disabled students, but it was exhausting and it felt like responses we did receive were just placating us. We made some positive changes, but it felt like for every step forward, we would be pushed back another six. I think as a disabled student you come to expect difficulties accessing your education, and that isn't right. Instead of entering my next degree worrying about whether the disability support is going to be good enough, I should be thinking about the things I'm looking forward to learning, the excitement of the whole experience, and this should be the case for every disabled student.
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ABA is Not Okay10/24/2021 CW: Descriptions of ABA First, a little bit of backstory: I am afab and Chinese, and as we all know, kids who are afab and POC often fall under the radar when receiving a diagnosis for autism. I figured out I was autistic when I was 23 when I got a job as a behavioral technician for autistic children and noticed that I had lots of similarities with all of the autistic children I worked with. I had never heard of ABA therapy before I got this job, so I didn't know how controversial it was, nor did I understand why it was so controversial. While working at this job, I took a graduate-level Introduction to Autism class, and boy did I encounter a lot of ableism. First of all, in the very first week, the book they had us read was called "Let Me Hear Your Voice: A Family's Triumph Over Autism." The title itself is ableist, as it shows how the author considers autism to be some kind of "enemy" that she needs to have triumphed over. The contents are as bad as you think; it's a book written by people who hate autism, and they are willing to do whatever it takes to try to force the autism out of kids, including putting children through lots of pain and suffering. The book describes children crying as adults touch and harass them against their will. Nobody else in the class seemed to think this was abusing the kids. I was so badly triggered that I wasn't able to articulate my grievances in a calm and collected manner at all; instead, I lashed out with hostility, and the professor reacted by dismissing all of my concerns and giving me poor grades. In the third week, we were given a video to watch entitled "A New Hope for a Cure." As everyone should already know, it is impossible to cure autism because autism is neurological, meaning it's connected to the brain and the spinal cord; plus, most autistic people don't even want a cure. The video had lots of ableist content. Psychologists put a boy through three years of ABA therapy for 40 hours a week since he was 13, and in the end, he was declared "free from autism." Even the boy himself believed himself to be freed from autism. We know for a fact that autism cannot be cured. That is impossible. The only explanation is that psychologists traumatized this boy so badly that he had to go into denial about being autistic so that they would leave him alone. Looking at the boy's eyes and listening to the way he talked, I could tell that the boy had PTSD because I was recovering from PTSD, and I know what emotional flashbacks look like from the outside. I pointed out that 40 hours a week of ABA therapy is way too much for a 13-16-year-old child, especially since he has to go to school at the same time. The professor once again dismissed my concerns and graded me poorly. There were many other ableist concepts taught in this class as well, but the book and video were the two worst ones I encountered while taking this class. Basically, the whole class kept talking about looking for toxic cures, which I repeatedly told the professor was not only impossible but hateful because wanting to "cure" autism is like wanting to "convert" gay people. They don't want to help us; they just want to get rid of us because they hate us. I wish I could say this story had a satisfying ending, but it did not. To this day, the professor has not changed his teaching curriculum. What has changed is that I moved on from my old job to a new one and am a firm advocator of "ABA is Not Okay." Thank you to our anonymous author for sharing their story.
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I need Trigger Warnings10/24/2021 I have PTSD and had to sit through a debate on whether or not content warnings were a “good artistic choice”. The professor of the class said “Trigger warnings are examples of according to a felt moral obligation to the reader…I have to reject them as a mistaken application of ‘real world rules’ to ‘imaginary world’ realities.” I explained that without trigger warnings, I have virtually no way to access media. Made a complaint to my school’s administration, nothing happened. That was the last straw for me, so after years of fighting for any accommodations I could get, I graduated with a 2.7 GPA and the knowledge that higher education wasn’t for me. Thank you to our anonymous author for sharing their story.
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I'm a Damn Good Scientist10/24/2021 CW: descriptions of bipolar mania I have bipolar disorder, and I'm a damn good scientist. It feels really freeing to get that off my chest, and I look forward to the day I can declare that without anonymity. Unfortunately, there is still an overwhelming stigma surrounding schizophrenia/bipolar in STEM. Depression and anxiety have started becoming acceptable to have, but other mental illnesses are still off-limits. Outspoken members of the sci-com community still use ableist terms like "manic" to describe a quirky thing they did that week. Mania is not quirky. Mania is life-ruining. Mania means I may never see my spouse again. Mania is the difference between waking up every day in a safe home and going to do research at a job I love and going on a drug binge that ends in jail/homelessness or thinking I'm God. Unless you have fought to sleep and eat for multiple nights in a row, knowing that if you do not get back on a regular life hygiene schedule, everything you enjoy in life will be stripped away from you, you do not get to discuss mania. There is nothing more terrifying than feeling your mood escalate to a point where you know it will be out of your control. Oh yes, so quirky and fun. I've heard peers make off-handed comments about how a certain person "obviously skipped their meds" just because that person was having an off day. If someone knows you have a mental illness, you're not allowed to have a bad day around them because it immediately gets attributed to your mental health and not the fact that you're a human experiencing a normal fluctuation in mood. In a lot of ways, I feel like an imposter by hiding my bipolar. If people knew that I had a mental illness, would they still look at me as the standout, infallible student/trainee/peer/friend they see me as now? Would the qualities they admire about me become the things they criticize me for if they knew some of my better personality traits were developed coping with bipolar? Maybe, yes, maybe, no. Bipolar is not all fire and brimstone. When managed well, it is an asset to my training. I've been stable with proper meds/therapy for the better part of a decade and lead an otherwise typical life. I hope someday I can find the courage to be out with my mental health challenges so I can help other people like me. At this point, I am both a contributor and a consequence of ableism in academia. Selfishly it is comfortable to hide my mental illness. Thank you to our anonymous author for sharing their story.
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