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Removed from Campus10/22/2021 Content Warning: PTSD, Bipolar Mania I want to let people know my story, but I wish to remain anonymous because of the stigma. I have bipolar 1, autism, C-PTSD, and a constellation of chronic physical illnesses. My first semester of college, the only mental health diagnosis I had was PTSD, so I had no idea I am bipolar. I was experiencing my worst ever manic episode for over four months my whole first semester, and although I remember very little, I can tell you the outcome. I was permanently removed from campus and have completed my studies (I’m currently a senior applying to grad school) entirely online. I have made opportunities for myself to conduct independent research and overcome this massive hurdle my university has put before me. The university refused to reconsider having me back on campus once I was stable on meds because it would make other students who saw my erratic behavior uncomfortable. They also refused to explain to the people from my dorm (it’s a tiny college) why I had acted that way. I couldn’t transfer because most of my credits would not have transferred to another university. I was stuck. I’m hoping for a better grad school experience. Thank you to our anonymous author for sharing their story.
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Campus Tutors10/22/2021 Content Warning: Sexual Assault, Suicidality My community college didn't have disability testing. They required doctor letters that have been written in the past 30 days. The only accommodation was 10 mins extra on test time, nothing else--no interpreters, notetakers, nothing. I'm Deaf. I went to campus tutors constantly to help with notes, then was raped by 1 of them. No investigation. No sympathy. There was no counseling services. It was implied by staff that I was lying to be excused from homework or exams since I was marked a high risk student (aka disabled + poor). I was in Phi Theta Kappa & took honors. I was hospitalized for suicidality, after they refused to take incompletes off my transcript. I was too triggered being on campus, so I dropped out. It was clear they didn't care anyway. Thank you to our anonymous author for sharing their story.
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Am I the only one?10/22/2021 I was really excited when I heard about DEHEM. I’ve been in graduate school for 10 years, and I’ve met very few other disabled people. Still, even after reading through all of the roll calls, I feel like I’m the only one like me in academia. I’m a schizophrenic with borderline (BPD). In all the conversations I’ve seen about mental health visibility in academia, I’ve NEVER seen anything about academics who experience psychosis. Anxiety and depression are becoming more normalized, but psychosis is being left out of the conversation. When I first started graduate school, I joined a group for mentally ill academics. Everyone inspired me with how open they were about their diagnoses. When I announced that I wanted to be open, too, the reaction was “Woah! No! No one will hire a schizophrenic.” Maybe there are other academics like me out there, but we’re being silenced and kept in hiding. I wish I could post this story with my name; but, since I want to become a professor, I just can’t risk it. My plea to those who are working on mental health issues in academia is to remember that I’m not the only one like me out there. Thank you to our anonymous author for sharing their story.
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Being open about plurality10/22/2021 Haven't seen a whole lot of folks like us in higher education, which is probably why we're choosing to share that we exist. Hello. We're an autistic grad student in the STEM field. We're also an undiagnosed (but seeking therapy) OSDD-1b system. In layman's terms: we're many people in one body as a result of identity dissociation, but do not experience traditional dissociative amnesia. This is also called "partial Dissociative Identity Disorder" in the ICD-10. While our dissociation was likely caused by long-term trauma in our childhood and teen years, we also strongly theorize it's possibly part of how we function as an autistic system. We have also experienced stress-induced psychosis symptoms, but do not necessarily want to claim a label there because of how little it affects our day-to-day life. Our path to discovering we were plural was very traumatic and interrupted our undergraduate career, and affects our current graduate school experiences. While the specifics of our experience are not in this story, we do know for a fact that we're not the only system that has experienced interruptions in school due to coming to terms with plurality, long-term fronting issues, and memory issues. We've recently started seeking out therapy in order to work through one of our headmates' trauma, as well as to work on strategies to deal with active memory dissociation during the course of our daily life, which leads to us feeling like we're just "waking up" several times a day. For us, being open about being plural is something we're still coming to terms with. Because we're "functional" (as in, able to retain memory and can mitigate most professional and interpersonal difficulties that arise from our plurality), it seems futile to associate ourselves with being openly plural, especially because of intense ableism and sanism within both wider society and academia. In STEM communities, it's common to discredit wrong scientific practice and conclusions with associations to delusion and insanity. In wider society, mentally ill folks with psychotic and dissociative symptoms are often portrayed as villains, as inherently evil, or as being affected by outside forces, which directly harms mentally ill people with psychosis and dissociative symptoms. Even within the mental health field, many clinical practitioners doubt the validity of DID and OSDD-1 as diagnoses, and within the advocacy community there is massive in-fighting about who "counts" as a legitimate system versus who "harms" the face of the community. There is immense pressure to disclose personal information about systemhood and trauma, to the point where people have posted their personal medical information in order to avoid harassment (though, as we're learning, this is not uncommon in some disability circles). Ultimately, what matters here is that of all the DEHEM stories we've seen so far (and we might have missed a few!), we've seen very little mention of what many might call "serious mental illness" like our own. We want to connect with other academics who have similar lived experiences. But in order to connect, we have to be willing to be vulnerable in an environment that has thusfar shown that being open about being "insane" (a label we've reclaimed for ourselves) is a legitimate threat to our ability to pursue the careers we want to because of how ingrained ableism and sanism are in our society. For us, our disabilities are ones that putting a name to more than one of them have dire social consequences, and we'd like to live in a world where, one day, that may not be the case. As an autistic system, we stand by and for everyone within the disability umbrella. We all deserve more than what we've been given within higher education, we all deserve to not be harassed for needing accommodations, we all deserve to not have to face ableism and sanism as a daily life torment. We also all deserve to not experience other forms of bigotry, including but not limited to racism, colonialism, sexism, misogyny, the many varieties of queerphobia, antisemitism, intersexism, and all others I have missed explicitly naming. We all deserve better. Signed: TDC We thank the author for sharing their story.
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Unsupportive Advisor10/22/2021 This weekend I decided that I need to switch labs. I am starting my fourth year, so it will be extremely painful and likely hurt my career, but my advisor keeps telling me that I don’t belong in academia and if I can’t work longer or harder then I should just leave. I believe that there should be a place for people like me in academia (I have depression and panic disorder, as well as hypothyroidism) and I want to make it through to help reduce the toxic cultural expectations, but I can’t do that if my advisor won’t give me a chance. I’m heartbroken. Thank you to our anonymous author for sharing their story.
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How are you?10/22/2021 CW: mentions of anorexia I dropped out of my undergraduate degree in engineering (returned 3 years later to finish it) due to severe depression. I was on antidepressants and attending counselling, but we hadn't yet found the right combination that worked. It was my last semester and I simply could not muster the energy to finish it. In addition to struggling with depression, I was dealing with extreme pain from endometriosis and was in recovery from anorexia nervosa. I was also struggling with an undiagnosed periodic limb movement disorder that left me extremely fatigued. Many days I couldn't even find the energy to get out of bed or to attend my counselling sessions. I ended up having to pay a lot of money for those missed sessions. In my degree, I dropped down to one course and passed it with the lowest mark on my transcript. None of my professors asked how I was doing. The one professor in the one course that I kept (but I missed lots of class due to the depression) never checked in on me to see what was going on. Once I found the right medication and the right counsellor, I was able to recover and return to finish my degree. I am now a PhD candidate in a different field. If I had had more support or understanding on depression, maybe I would have been able to finish my engineering degree that last semester. There is such a stigma around mental health, we need to work at being more accepting of mental health challenges in higher ed. Thank you so much to our anonymous author for sharing their story.
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Tackle Your Ableism10/20/2021 Hello to our allies in the community! You may be wondering how you can participate in #DEHEM21 and support disabled students, staff, faculty, colleagues, and individuals in the community. One thing you can do is unlearn & tackle your ableism. Ableism is the discrimination & social prejudice against disabled people. Everyone can experience ableism, but it is most prevalent for disabled individuals. It can be both explicit or implicit. What can you do to tackle your ableism? Here are some Don’ts for Disability as an Ally: 1) Don’t use disability as a punchline or to mock people with disabilities. Often, people use disability in jokes or use ableist language to describe others. This language harms disabled people & the disabled experience. 2) Don’t ask disabled people invasive questions about their medical history or personal life. People often assume they can ask whatever they like, but no one has a right to know anyone’s medical history or have access to their personal life. 3) Don’t talk to disabled people like they are children or speak for them. Often, people presume that disabled people are incompetent to express their own needs. This isn’t true. It often leads to the neglect of what a person’s needs are. 4) Don’t assume that if you can’t see someone’s disability, then that person must not be disabled. Visible disabilities are only one type of disability, and invisible disabilities make up a large majority. Disabled people are diverse and dynamic! 5) Don’t frame disability as a tragedy. Don’t assume that our quality of life is less just because we have a disability. While it is difficult to be disabled, disabled people also have fantastic lives & accomplish many things. 6) Don’t frame disability as an inspiration. This is often how the media portrays disability, and it is called inspiration porn. This is harmful as it portrays disability as something deserving of pity & objectifies disabled people to the benefit of nondisabled people. Inspiration porn can seem well intentioned, but it can also be very exploitative, dehumanizing & make assumptions about how disabled people live or what disabled people think or feel. This perpetuates stereotypes of what disability is and what disabled people are capable of. 7) Don’t refuse to give disabled people the accommodations they deserve. Accommodations provide disabled people access to the same world you have access to. They are a necessary part of the inclusion of disabled individuals. Refusing them is to deny access to disabled people. 8) Don’t assume that if you know one person’s disability, you know every other person’s disability. Disabled people are diverse and each person’s needs and abilities are different. 9) Don’t assume disability is static. What one disabled person needs one day can be different the next. It can change even within hours & can vary across time. Disability is dynamic! Here are some Do’s for Disability as an Ally: 1) Do understand what ableist language is & why it is harmful. This website provides some background & substitutes for ableism language [link] https://www.autistichoya.com/p/ableist-words-and-terms-to-avoid.html. Understand the language preferences of disabled people around you. Most disabled people have language preferences for how they describe their disability (e.g. person-first vs. identity first). Ask individuals what language they prefer, and stick to that. It is always best to ask! 2) Do ask disabled people about their needs and accommodations, if appropriate. Often, we may need accommodations & accessibility is not considered by others in our environment. 3) Do talk directly to disabled people when they are present. Disabled individuals are experts in their own lives and in their own needs. Be respectful & treat them as valuable members of the community! 4) Do understand that disabilities come in all forms & from all backgrounds. Disability affects so many different people in different ways. People may be physically disabled and/or they can be invisibly disabled, or both! 5) Do understand that disability is dynamic. Disability can be temporary or life-long. It can be visible or invisible, or somewhere in the middle. Presentation & needs can change on a daily or hourly basis. Understand that disability is not a monolith & is very diverse! 6) Do consider accessibility in everything that you do. By considering accessibility from the get-go, you can ensure disabled people have access to the community & other environments. Think about whether your university, lab, and community are accessible to disabled people. Likely, you will find that many environments are not readily accessible to disabled people. Start thinking about how you can improve the environments around you to be more accessible & inclusive to disabled people. Understand frameworks such as universal design and how to implement them to ensure an accessible environment. Hire disabled people as consultants for events or in other planning. Make sure that there is an office or forum for an event that can take accessibility requests. Make sure these things are well advertised so that people know where to go to request accessibility. On the internet, make sure your images have alt-text or image descriptions, use camel case in hashtags (#DisabledInSTEM), & use captions on videos. You have privilege as an ally. Use that privilege to help make accessible spaces for your disabled friends/colleagues! 7) Do make sure you are providing the accommodations disabled people need and believe disabled people about their needs. Again, disabled people are experts on their own lives & needs. You may not understand every need, but do respect them. 8) Do listen to us! Being a good ally to disabled people means being able to listen and not speak for us. Do not come into conversations with disabled people with assumptions. Listen and you will learn how to best support us! 9) Do remember that you are not our savior. Disabled individuals are full individuals just like anyone else. We deserve to be seen as valuable members of any environment we are in. Remember that disabled people have unique perspectives to bring to the table. 10) Do listen to the disabled community on issues affecting them. Here are some great Twitter accounts to follow: @DisVisibility, @AAPD, @BlackDisability, @HabenGirma, @Imani_Barbarin, @sampson_dog, @the_tweedy, @bennessb, @DisabledAcadem. We welcome allies into the community. They are vital to our mission of dismantling ableism & other forms of systemic oppression.But, it is important that disabled people have agency over their own lives and stories as well as be seen as valuable members of the community! These are only some things that allies can do to tackle their ableism. Does anyone else have anything else to add for allies who want to unlearn their ableism? Here are some more resources for allies on ableism & supporting the disability community:
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Disability 10110/20/2021 As we launch Disabled Empowerment in Higher Education Month, it's important to talk about what disability means, how it is defined and discussed, and the basics people need to know. This thread will kick off #DEHEM21 by serving as “Disability 101”
What is disability? There is no easy answer to this question. It depends on what model you are using. The CDC defines disability as “any condition of the body or mind (impairment) that makes it more difficult to do certain activities (activity limitation) and interact with the world (participation restrictions)” This CDC definition of disability is consistent with the medical model of disability, which is one way of conceptualizing what it means to be disabled in society. The medical model of disability defines disability by what a disabled person lacks in physical and productive ability. We can see this reflected in the term “impairment” in the CDC definition. As a result, the medical model of disability conceptualizes the challenges faced by disabled people in society as a product of the disabled person’s reduced ability. For example, in the medical model, the issue is that a wheelchair user is not able to walk up the steps to a building, or that a blind person can not see a restaurant menu to read it. For these reasons, and more, many disabled people prefer the social model of disability. The social model of disability conceptualizes disability as the barriers disabled people face, because society is not accessibly designed. Under the social model of disability, the issue is not that the wheelchair user can not walk up the steps, but that there is no ramp or elevator to allow them access to the building. Using the social model allows us to remove the stigma from disability, and focus our effort on addressing societal barriers to access and equity for disabled people. An example of the social model of disability many allies are likely familiar with is the use of corrective eyewear, like glasses and contacts. Many people require glasses and contacts to perform everyday tasks like reading, writing, driving, and more. However, we as a society do not consider needing glasses a disability, because we have provided people who need glasses a societal accommodation. Glasses are widely available, affordable in comparison to many aspects of health care, and importantly, are largely no longer stigmatized in our society. With this appropriate accommodation, those who need glasses can participate in all aspects of our society in the exact same way as people with natural 20/20 vision. Because society often views disability through the lens of the medical model, many people often view disability as something to be seperated from personal identity, because disabilities are seen as bad, shameful, or somehow a “wrong” way of being human. This attitude towards disability as something to be corrected, rather than a part of a person's identity, can be seen in the way society expects us to overcome disabilities instead of making things accessible. An all too common example of this is inspiration porn. In considering the way we think about disability, and what it means to be disabled, it's also important to address the way we talk about disability. Disabled In Higher Ed (and DEHEM) use identity-first language, also terms disability-first language in some countries, because we view disability as a personal identity. Disability is a part of our personal identity, like any other identity. In the same way members of our team are women, and bisexual, and non-binary, and Black, we are all also disabled. We respect the right of every disabled person to identify in the way they feel most comfortable, and some disabled people do prefer person-first language. You should ask a person’s preference and/or notice how they refer to themselves. Person first language is the act of asserting personhood before condition or diagnosis. For example saying “a person with autism” rather than the identity first alternative “an autistic person.” The use of person-first language as the default among non-disabled people can perpetuate the idea that disability is something separate from the personhood of disable people by implying that a reminder of our humanity is necessary. Disabled in Higher Ed do not accept disability euphemisms from non-disabled people (e.g.) differently abled, etc… Many disabled people face ableism, which is defined as prejudice or discrimination against disabled people based on the idea that disability is a diminished state of being human. Ableism can take many forms, from assumptions and stereotypes, to policies and procedures, to the physical environments in which we live and work. The goal of #DEHEM21 is to bring attention to the institutional and interpersonal ableism faced by disabled people at all levels of higher education, and to work to address these systemic barriers for a more equitable academy Join us for our month of programming as we explore these themes through four core lenses: Intersectionality & Disability Identity, Accessibility & Allyship, Mental Illness & Minority Stress, and Marginalization & Accommodations. References |