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Disability Support Services, Spring 2023

Welcome to the eighth issue of Resourceful News!

Hello readers!

Here we are in the swing of spring with another span of (mostly) in-person classroom interaction behind us. It has been good to share space, relate ideas, grow conversations, and create work together. While university culture tends to be heady and discourse-driven, it is still important for all of us—students, faculty, and staff alike—to feel like we have a place and a home on campus. Whether it comes from our departments, our programs, our interest groups, or our committees, this sense of belonging reminds us that we play a part at Lesley beyond the metrics of grades, credits, and hours in the office. It allows us to connect more fully to our roles and sense of purpose within the university.

Celebration of culture and identity is also integral to feeling known on campus. Being with people who understand our backgrounds, lived experiences, struggles, and achievements can be both comforting and liberating. This is true in relation to race, ethnicity, religion, gender, and sexuality, as well as to disability. Beyond diagnosis and pathology, disability is a social and cultural identity. It informs how folks move through the world, interact with art and media, process information, and relate to others. It intersects with and amplifies other aspects of identity. Because we live in a world that perpetuates bias and inequality, being disabled also means contending with ableism in its myriad structural and interpersonal forms. Here at Lesley, we are working to cultivate space for disability within Disability Support Services, disability studies curriculum, groups like the Disability Advocacy and Education Group, and this newsletter. But for an identity so often made invisible, there is always more to do.

For this issue of the newsletter, we are looking at how we might encounter disability on campus. Journalist Liann Herder writes about the formation of disability cultural centers on campuses across the country. The Q & A has a question about service and assistance animals. An interview with student Maeve Rotolo dives into neurodivergence and self-compassion. For some absolutely beautiful written and visual art about disability, head to the student showcase. It is pretty wonderful!

In partnership,

Holly Aldrich, Assistant Director, Disability and Access Services, and Editor

Featured Articles

View Articles Featured in this issue of the Newsletter.
  • Only Ten Disability Cultural Centers Exist at U.S. Institutions

    By Liann Herder

    Originally published on Jan. 27, 2022 for Diverse Issues in Higher Education (Reprinted with permission of the author)

    Go to  Only Ten Disability Cultural Centers Exist at U.S. Institutions | Diverse: Issues In Higher Education for the full article with links.

    When Rix Prakash started looking at colleges last year, he envisioned himself following his sister Simran to Duke University. He was hoping to take advantage of Duke’s brand new Disability Cultural Center, established in part thanks to his sister’s efforts and advocacy.

    “It takes a lot of time to push for centers, or for things to be changed,” Simran said.

    In fact, when she arrived at Duke in 2018, the student organization Duke Disability Alliance had been advocating for a cultural center for at least a year. Simran knew in order to convince administration and staff at Duke that a cultural center would be advantageous, she needed to show strong student support. So, she polled her fellow students and presented the results to Duke administration. Students, regardless of their ability or disability experiences, were in favor of the center’s creation.

    By fall 2020, Simran received word that Duke had agreed, and the college would create a Disability Cultural Center on campus. It became only the tenth institution to do so in the nation.

    Disability Cultural Centers (DCCs) are different from Disability Resource Centers (DRC) on campus. Resource centers manage the academic needs and accommodations of a student. Cultural centers are physical places (many virtual, during the pandemic) for students to connect with other students, faculty, and staff with disabilities and share their experiences, helping to build identity and a sense of belonging at their institution.

    Rix did not end up attending Duke. Instead, he took the lessons learned from his sister and applied them at the University of Virginia (UVA), where he is a member of the Chronically Ill and Disabled Cavaliers (CIDC) student group. Together, Rix and the CIDC are hoping to create the eleventh DCC at UVA.

    According to the CDC, 61 million adults in the U.S. identify as disabled, roughly one in four people. Their disabilities vary, from mobility to cognitive, to hearing or vision loss, or difficulty living independently. The number of disabled students on campus has been growing steadily since 2005.

    The very first DCC in the U.S. was created in 1991 at the University of Minnesota Twin Cities. It was created after the passage of the Americans with Disabilities Act (ADA) in 1990. But it took over a decade for the next DCC to be created at Syracuse University.

    “My understanding is we’re hitting critical mass of students and faculty, staff on campuses who are finding that disability services and resources, while helpful, are not imbued with the space for disability community and identity development,” said Jeff Edelstein, a board member of Disability Rights, Education, Activism, and Mentoring (DREAM), a virtual cultural center that’s part of the Association on Higher Education and Disability (AHEAD).

    “There’s still a stigma [against disability], but the emergence and efforts of disability justice organizations have been able to promote disability ties to broader social justice,” said Edelstein. “We’re starting to see an improved representation and a recognition of the importance of that.”

    The intersectional nature of disability lends itself toward partnerships with other diversity, equity, and inclusion (DEI) cultural movements on campus. But Edelstein said that disability is often excluded or only a minor part of an institution’s DEI office.

    “The goal is never to replace another social identity, it should just be to broaden, deepen our understanding of other types of oppression and things on campus,” said Edelstein. “The hope is that [DEI officers] can be great allies, acknowledging how ableism informs other types of oppression.”

    Anh Thomson, assistant vice chancellor of student affairs and director of the equity, diversity and intercultural programs at the University of Minnesota Morris, is one of the few scholars to study the effect these cultural centers have on campus. Their research built on their personal experiences, having spent the last 12 years working at different cultural centers at the University of Illinois: Chicago (UIC). Thomson's dissertation, defended just this January, concludes that DCCs have “facilitated and affirmed” students’ disability identity exploration.

    The students they interviewed for her study came from all levels of academic study. The only requirements were that they identified as disabled and attended events at their campus’s DCC.

    “To know that their disability-positive identity was supported—it was huge. It reminded me of the other cultural centers where I worked,” said Thomson, who added that many disabled students, prior to attending college, did not have a connection with other disabled people, in their home life or friendships.

    But DCCs are also unique as cultural centers, said Thomson, because they work to confront issues of ableism on campus, acknowledging the shifting lens through which scholars understand disability.

    “Typically, in the past, disability has been framed as a matter of moral failures, your medical model, your religious model,” said Stephanie Dawson, the director of the Miller Center for Student Disability Services, the DCC at Miami University. “The emphasis there is the idea of a pathology within a person’s mind and body. This model sees [disability] as something medically wrong, to be fixed. We really embrace the social model and cultural lens, the idea that disability should be celebrated and is a part of human diversity.”

    The Miller Center’s cultural events are guided by their Students with Disabilities Advisory Council. This year, the Miller Center ran a program called Miami Bound: Mastering Disability Access at Miami, where students with disabilities were invited to come on campus two days before the general student population. Students were able not only to connect with the Miller Center about their accommodations but were invited to share stories with each other about how ableism has impacted their lives.

    Miami University has a disability studies program, and Dawson said the evolution of their cultural center gradually grew from there. When their physical space was updated just over five years ago to a more centralized location on campus, “it became easier for students to drop in and engage in the space,” said Dawson. 

    Dawson said a key to their cultural center’s success is the support of other diversity, equity, and inclusion leaders on campus. The cultural centers on campus work together to build programming, collaborating to be fully inclusive.

    Kinshuk Tella made his decision to attend Miami University in part because of their disability center. Tella is studying environmental science and geology and expects to graduate in May 2023. Before coming to Miami, he had never had the chance to connect with his disability community.

    “I grew up in Miamisburg, and I was the only blind person I knew I my life,” said Tella. “It was very isolating. I didn’t realize how isolating it was until I got into this club. I remember going the first time in August 2019. I instantly felt I was in a place I could be comfortable. I wasn’t the different one, the odd one out.”

    Since then, Tella has become even more involved with the disability community, joining the National Federation of the Blind’s student division. His work there has led him to travel to D.C. to advocate for disabled rights.

    Dr. Margaret Fink, director of the UIC DCC, said that disability cultural centers can help take their institution beyond mere ADA compliance. Fink’s DCC is located in old classrooms on their main campus, near the gender and sexuality cultural center, which makes collaboration easier.

    “I think having space and energy for disability community and culture is really important, because universities are not easy places to be as a disabled person,” said Fink. “One thing that is helpful to recognize is that university culture is non-disabled. Even if you’re very well intentioned, that experience of not being anticipated or inaccessibility in various formats can be trying.”

    Fink said that joining the disability community hasn’t just been transformational for her students, it’s been transformational for herself.

    “The way many of us are raised is to understand [disability] as an individualized condition. There may be shame, or there’s something wrong with us—this is ableist culture,” said Fink. “The social model of disability, a paradigm shift that comes from disability activism, is to say the problem isn’t with the individual, it’s the inaccessible spaces that create barriers.”

    Events hosted at DCCs are not only offered to those students who identify as disabled. Rather, they are places where disabled and able-bodied students, faculty, staff, and alumni can gather and learn about each other. UIC’s DCC partners with an event called the Bodies of Work consortium, which brings a disabled artist into residence each semester to do student workshops.

    The majority of DCCs were created by student activism, which, while effective at communicating the urgency of need, can make actualization of a physical cultural center a slow process. Undergraduate students have an average of four years to make an impact, and graduate students even less. And while AHEAD’s DREAM does offer a virtual community space for disabled students, Edelstein said it’s important for institutions to create their own cultural centers to the respond to the specific needs of their students.

    “Some folks assume that because there are disability services and resources on campus, that’s sufficient. That we don’t need [DCCs],” said Edelstein. “There’s so much stigma, the importance of having the space to discuss [disability] openly is really huge. It brings us to the campus in a way we can’t ignore.”

  • More Human Than Anyone: An Interview with CLAS Student Maeve Rotolo

    Maeve Rotolo (they/them) is a sophomore honors student studying creative writing. They are also a member of the Disability Advocacy and Education Group. In this interview, they share their experience with autism as it relates to their identity, academics, and career goals. Their words are honest and thought-provoking.

    What is your understanding of what it means to have autism?

    It's a very broad question, because autism definitely feels like one of those things that is hard to properly describe or put into words unless you are experiencing it yourself. So much of it is subjective and emotion-based.

    My understanding of it is that it's something that is both enlightening in a way but also nerve-wracking and scary. I was diagnosed very early in my life. I was diagnosed when I was about two years old, but I found out a lot later just because my parents weren't really sure how to bring it up. But eventually, they told me.

    Once you figure out that you have autism, you start to have this realization that that diagnosis has affected and will continue to affect every part of your life. It affects how you speak, how you interact with people, how you move, how you experience the world in general. Looking at it that way, it can be a very overwhelming thing.

    I think that part of it causes a lot of frustration with autistic people, and I myself have felt it. We go down that spiral of, “Why do I have to feel like this when everyone else doesn't have to? Why can't I just be a normal person?” That frustration is very normal.

    But I find it enlightening and almost beneficial in a way because it does give you an outlook on life and the world that other people don't really have. You're able to notice things in your environment that other people might not pay attention to, and that could lead to a greater appreciation of that environment and of that world. It also gives you a unique perspective on how people socialize, how people are, and how things work.

    I think that that is definitely one of the components that lends itself to a lot of autistic people being more creatively minded, because you have a very distinct way of seeing yourself and seeing your position in relation to other people. It definitely is a very right brain way of thinking.

    As a creative writing major, I feel like that perspective has helped me, and it's a perspective that I wouldn't want to change because it's something that is ingrained in who I am and in my physiology and in my psychology. I just see it as like, “This is just what I am, and this is just what I do." And sometimes it's hard to accept that, especially at first. But as I've gone along, I've usually been able to see the more beneficial sides of being autistic rather than beating myself up for things that I can't control.

    How have you benefited from utilizing accommodations here at Lesley?

    I think the way that I've benefited is obviously in the more straightforward way where I've been able to find support from specialists during a time when I was trying to get used to an unfamiliar setting and an unfamiliar stage of life, like college.

    They definitely helped with figuring out time management and emotional regulation during a time when that was very hard for me. I was having a lot of trouble adapting to that change and managing the anxiety that I had tried to deal with all throughout high school, and then it just flared up again the second I got to college. But having that support definitely helped.

    In a more roundabout way, it helped me realize that I was not struggling as much as my anxiety was telling me I was. My first year at Lesley, when I was talking with people like Kim Johnson about accommodation letters, she recommended a lot of different services, like note taking services and reading services like Kurzweil. I put those in as accommodations just in case I needed them.

    Then I realized, “Oh, I'm doing just fine with this content without these things, so I don't really need them in the first place.” In a way, having those services has helped me build confidence. At the start of my time at Lesley, they provided a safety net for me where I could look at those accommodations and think, “Okay, just in case I need these things, I have them in place.”

    Over time, those training wheels have come off, in a sense, and I'm able to be a lot more confident in my ability while still having certain things in place in case of extreme circumstances. I'm definitely grateful for having that experience.

    What advice would you offer to other people with autism who are thinking about going to college?

    Both because autism manifests itself differently in different people and also because the college experience is going to be so different for different people, it's difficult to have universal advice for all people. The main thing I can say regardless of what major you're going into or what kind of classes you're taking is to just try and be gentle with yourself during those first few semesters, because a lot of autistic people already have a lot of trouble adapting to sudden change. Going to college is a very sudden change. When you're at that stage in your life that is usually stereotyped as being the time when you've matured and you've become an adult and you're ready to move on to learn how to get a career, it can sometimes feel really frustrating when you find yourself still stuck in the same kind of anxieties you would have when you were a kid or when you were in elementary school.

    Speaking from personal experience, it can lead to a lot of shaming and a lot of beating yourself up and thinking like, “I'm supposed to be past this. Why am I going back to this now? I'm supposed to be better.” That's just going to happen no matter what. Your brain, unfortunately, is just going to react that way to that change no matter what.

    The most important thing is to give yourself that time to adjust and to know that you are going to adjust eventually. You're not just going to be freaking out forever. Know that it's okay to be nervous about new things because every other student around you is just as scared as you are. You'll see that if you talk to any of them at any point in your freshman year.

    That's the best advice I can give. Trust your own judgment, try to be as kind to yourself as possible, and give yourself that space to adapt to that new schedule that you're on. It will become routine eventually.

    What impact has being autistic had on your choice of career and your professional goals?

    Being autistic wasn’t the only part, but I do think it was a factor in me wanting to pursue a career in writing. I've always been—I'm trying to say this without coming off as pretentious—I've always been a very imaginative kid and I’ve always used escapist strategies to deal with anxiety or how I was feeling about certain things. I liked to read. I liked watching movies. I liked getting lost in fictional scenarios and fictional worlds.

    When I was in middle and high school, I had all of these stories that inspired me or resonated with me or helped me think up my own ideas for stories before I really knew how to write well. I felt that I wanted to try and give that same feeling to other people in the hopes that they would be inspired to make their own worlds and make their own stories.

    That was the motivation that I had for becoming a writer because I felt that I had some interesting ideas and I also wanted to help other people feel like they were being, I guess, spoken to through the work the same way that I was. Being autistic factors into that because I've tried to make stories that have autistic or neurodivergent characters in them so that people who read them or watch them feel like they're being represented. Then those experiences can be legitimized and normalized for those people and for people who might not fully understand them.

    I guess my professional goals are very lofty and naïve when looking at the reality of trying to break into the writing world, but I do still hold out hope that I can make something that other people gravitate to. Even if it's just a small community of people, I want to make sure that I'm telling stories with characters that I have a personal connection to and in a way making those stories more universal so that other people can relate to them. I don't think there are enough neurodivergent people in media and there’s not nearly enough good neurodivergent representation.

    What else would you like to add from your perspective as a neurodivergent student at Lesley?

    I do have some things to say in general. But with academics specifically, again, when you realize that you're autistic and you realize how that has affected your life and how you interact with people, that's also quickly followed by the realization that the world that you live in wasn't built for you. It wasn't made with people like you in mind. That can lead to a lot of difficulties and discrimination.

    Some educational institutions can feel like that. Some of them are just ableist and others are acting unintentionally but are still holding on to that narrative of disregarding neurodivergent people or people with disabilities. Even Lesley, which has a lot of accommodations for students, does have some problems with accessibility and disability stuff.

    It's very easy to go into that setting and feel like you don't belong there because, honestly, a lot of the time you really don't. But that doesn't mean that you haven't worked hard to be in that position and that doesn't mean that you don't deserve to be there. Because if you've made it so far, then obviously you're supposed to be there, obviously you're there for a reason.

    Advocating for yourself and asking for help is probably one of the most important things that you can do as a neurodivergent student. You're making instructors aware of your capabilities or of your limitations or support you might need in certain areas. More often than not, there will be understanding of that even if they're not dealing with that themselves. So reaching out, asking for support, asking for help when you need it, is something that's very important.

    More of a general statement for autistic people is that, again, autism affects everyone in different ways. I personally do not see being autistic as a disability, but people might have different perceptions of that depending on how affected they are and how much it affects their everyday life or their basic functions.

    I want autistic people to know that—I don't know how I'm going to put this—being autistic does create obstacles for you. Even as someone who has grown out of some of their more noticeable behaviors, it does still affect me.

    I'm my own worst critic because of it. I'm always noticing little things that I do with how I move or even small things like how I hold things or how I carry things or how I put things down. And I'll think to myself like, “God, that was such an autistic way of doing that. I really hope no one saw that.”

    The best way that you can learn how to live with that is acknowledging that you can't change it, which is frightening, but also acknowledging that while it may create obstacles for you, it can open certain doors for you that it won't for other people. It’s about keeping in mind that you're always going to be your own worst critic when you're interacting with other people. Most people don't care. If they do care, then that's their problem. It's not yours.

    When I was a kid, I was labeled as the weird girl in my class, but I want people to know—I guarantee you that other people wish that they had your mind and they wish that they could think like you do, because it can be genuinely amazing at times. It can be overwhelming, and it does provide obstacles, and it is really frustrating, but it's also just amazing.

    People who can think that way have been at the forefront of so many innovations and discoveries. I don't think that you should put yourself down just because you walk in a weird way, or you hold something in a weird way, or you like something that other people don't like. You're still a person and you're still human.

    Honestly, with how autistic people experience the world and all the different sensory things we feel, you could make an argument that we're more human than anyone. I just want people to keep that in mind. I don't want you to go around being afraid of yourself, because you're going to have to live with yourself your whole life. You may as well be gentle with yourself.

  • Faculty Q & A

    Q: I am wondering about animals on campus. I know that there is a difference between service animals and assistance animals, but I am not clear on the details. Can you explain?

    A: Awesome question! While both service animals and assistance animals can be beneficial to students with disabilities, there are important distinctions to be made. Under the Americans with Disabilities Act (ADA), a service animal is a dog (or a miniature horse, in rare cases) that has been trained to perform specific duties to assist a person with a disability. Duties might include guiding a person with a vision disability, retrieving objects for a wheelchair user, providing stability for someone with a mobility disability, intervening to stop self-harming behaviors for someone with a psychiatric disability, or alerting and protecting someone with a seizure disorder. Service animals are generally allowed to go anywhere their handlers go, with exceptions for certain lab and medical environments. Only two questions can be asked of someone with a service animal, and they are, “Is this a service animal required because of a disability?” and “What work or task is this animal trained to perform?” Neither validating documentation nor a certain certification is required for a service animal.

    By contrast, assistance animals (also called emotional support animals or therapy animals) fall under the Fair Housing Act (FHA) of the Department of Housing and Urban Development (HUD), not the ADA. Therefore, they are allowed in housing or residential settings only, such as apartments or residence halls. Any domesticated animal can be an assistance animal. Assistance animals do not need to be trained to perform tasks for a person with a disability, but they may have some basic obedience training. Their main function is to provide general therapeutic comfort for someone with a mental health condition. Perhaps they act as a soothing presence for someone with anxiety during panic attacks, build a sense of purpose and direction for someone with depression, or are simply a bright spot on a tough day. Colleges and universities can require documentation from a qualified provider regarding a disabled student’s need for an assistance animal. Additionally, they can have policies and expectations for behavior, care, and veterinary records.

    Students requesting to have an assistance animal must meet with a member of our office and submit paperwork from a qualified healthcare provider pertaining to their request, the nature of their disability, and the clinical connection between their disability and the need for an assistance animal. The care and safety of the animal in the residence hall is also important to consider.

    If you ever have questions or concerns about a student with a disability with a service animal in your classroom, you can reach out to Disability and Access Services. Most service animals go about performing tasks in the academic setting without issue, but occasionally you may find yourself in need of more guidance. We can work through such scenarios using a case-by-case approach so that you get the answers you need, and the student stays safe and supported in the classroom.

  • Student Showcase

    Lesley Lives on in Me

    By Steinberg Henry, PhD in Educational Studies, Human Development and Learning

    And so the story goes. After three years of coursework and one-and-a-half years of research and dissertation writing, I defended my dissertation on March 27, 2023. Not only was this an important adventure to a PhD; it was an emotional ending, indeed, the beginning of another set of research.

    My dissertation was titled Active Imagination, Wellbeing and Ways of Seeing: a Phenomenological Inquiry into Experiences of Adult Learners with Visual Impairments.

    Yes, I am blind. I may well be the first blind student to graduate at the PhD level from Lesley’s Graduate School of Education.

    Holly Aldrich prepared all required reading material over the years – I was asking about another book just a few weeks ago. I still remember when Ruth Bork told me in 2018 that she would be handing over disability services coordination to Holly. The work must continue.

    I am hoping to encourage and support, emotionally and psychologically, adults who lose sight as adults and let them know that there’s much more to them than just their eyes. I will be bringing that message to the world and to the countries of the Caribbean, particularly my island of birth, Dominica. Just imagine how thrilled I am to hear that Erik Weihenmayer, the first blind man to reach the summit of Mount Everest, is going to be the Commencement speaker, May 20, 2023. He is a 1993 Lesley graduate.

    It feels surreal, but it is really real. I’ll be there! In addition to the wonderful professors in Lesley’s GSOE, I just want to hail up Kolin Perry. He served as my guide throughout those residences. Everyone I met drew out the best in me. Yes, Lesley lives on in me with pride and confidence.

    Amplified Pain

    Artwork by Ashlynn Cutone, LA+D student in Animation

    Bright watercolor of a crying girl stuck with multiple pins. The background shows implements for pain management.
    A visual representation of Amplified Musculoskeletal Pain Syndrome (AMPS). The image is created with watercolor done in bright flashy colors. A girl with brown hair in pigtails is crying and has needles all over her body. In the background there are words that read "pins, ache, needles, burn, zap, twitch" The background is also covered in tools to assist in pain such as heating pads, pills, a phone, a speech bubble, lotion, and more.

     

    Untitled

    Artwork by Lizzy Levering, GSASS student in Art Therapy, Clinical Mental Health Counseling

    Abstract multicolored painting of a two-headed figure with torso. The background is filled with circles and dashes
    Abstract painting depicting three overlapping faces connected to a torso. The piece is done in bright shades of yellow, orange, red, green, blue, purple, and pink. The eye, nose, mouth, and brow features of the faces are done in rippling lines, squiggles, and circles. Strong repeating dashes extend out from the ears. The torso is filled with swirls, hatch marks, and lines. The background is filled with blended, smeared colors. A series of black circles with red centers cascades down the right side of the painting.
  • Lesley University Groups Focused on Disability Education, Advocacy and Support

    Disability Advocacy & Education Group 

    A group that both advocates for Lesley’s disabled community as well as plans events and initiatives that serve to educate the Lesley community on disability. Established in November of 2021, the group consists of many members from across the university, including students, faculty, and staff that either identify as disabled or as allies. For more information, please contact one of the group co-chairs, Bill Porter at wporter3@lesley.edu, Kim Johnson at kjohnso7@lesley.edu or Raine Snyder at ssnyder9@lesley.edu

    Check out the recording of Deconstructing Disability: Life Experiences from the Minds of Neurodivergent People from Community of Scholars 2023 to get a sense of the group’s work.

  • How to Get in Touch

    Do you just want to get in touch with Disability Support Services? Do you have a question about a student, an accommodation, or a disability issue? Would you like to provide feedback on this newsletter or pass along a suggestion for an article? Great!

    Our information is as follows:

    Disability Support Services
    dss@lesley.edu

    Dan Newman, Executive Director, Disability Support Services, ADA/504 Coordinator
    dnewman@lesley.edu

    Holly Aldrich, Assistant Director, Disability and Access Services
    haldric2@lesley.edu

    Dawn Pulley, Disability Access Specialist
    dpulley@lesley.edu

    Kimberly J. Johnson, Director, LD/ADD Academic Support Program
    kjohnso7@lesley.edu

    Kathleen Hartnett, Learning Differences Specialist
    hartnett@lesley.edu

    Sonam Shankar, Learning Differences Specialist
    sonam.shankar@lesley.edu