It’s been 30 years since the passage of the Americans with Disabilities Act. As a disabled autistic, I have often wondered about the conversations on inclusion, access and civil rights that still seem to be a work in progress when it comes to the disability community. To find out more, I chatted over Zoom with five other students with more traditional disabilities here on campus: Alena Morales, Carlos Vazquez, Josh Lavine, Katie Savin and Oliver Stabbe. They span a range of majors, with Morales in nutrition sciences, Vazquez in political science and Lavine in sociology, philosophy and disability studies. Savin is a fifth and final year Ph.D. candidate in the School of Social Welfare, and Stabbe has just enrolled in the health and social behavior graduate program in the School of Public Health.
I began by asking each student what came to mind when they thought of the word “disability.” For Vazquez, it was resilience, as we are able to navigate the road of challenges and never give up in the face of adversity and ultimately lead amazing lives. For Morales, it meant a “fresh start.” Justice, policy and politics were what came to mind for Lavine, Savin and Stabbe, respectively.
As Stabbe explained, it “requires strategy to know when to stand up, speak out, call out or call in and when it’s in your best interest to play the long game.”
Each student was also asked what they thought nondisabled students think about students with disabilities.
“What don’t they think about us!” Morales immediately said. Those of us with disabilities have been barred from using our voices in mainstream places where decisions were being made, she continued, which makes people think we are inferior. What this amounts to is taking away agency from the disability community, which means we don’t get a voice to overturn stigmas built up over the years.
“By virtue of existence, we challenge the status quo and recenter the idea of what personhood is.” – Oliver Stabbe
Vazquez elaborated on the stigma aspect. It’s a presumption that individuals like him are not capable of achievement. For example, though he had been mainstreamed from an early age, Vazquez’s kindergarten teacher ignored him and just wanted him to play rather than learn like the other kids in the classroom.
Lavine said he feels that people think those with disabilities are deficient or using up resources unfairly and that we are a burden on the rest of society.
Savin spoke of the theme of pity associated with people with disabilities, or the sense that they are not capable of being productive members of society. People also find it hard to relate to us and have a fear of saying the wrong thing.
Stabbe thought that the existence of people with disabilities made nondisabled people apprehensive. “By virtue of existence, we challenge the status quo and recenter the idea of what personhood is,” he said.
The conversation then turned to some common misconceptions regarding disability. Morales pointed to the common idea that disability is all about failure. She admitted that while her disability does make her daily routine more time-consuming and flare-ups do happen, she enjoys her life, and she said her disability is a deeply ingrained part of her identity.
Lavine addressed the issue of invisible disability, which causes others to assume certain disabilities are not real just because one is not making use of obvious mobility devices, such as a power chair.
Vazquez wanted to highlight that disability needs to be thought of as a cultural identity and not just a diagnosis given to a person who is not fully functional. Disability exists as a vibrant community whose members have ways of interacting with one another and the environment, which makes disability a kind of cultural group.
Savin believes that disability needs to be thought about as a natural spectrum of the human condition — rather than in destructive terms — in order to promote inclusion and creativity.
A variety of disability experiences
To help the reader better appreciate their experiences, each student also delved into the nature of their own disability.
Lavine’s disability started at age 16, after which he experienced different symptoms and conditions. But the end result is chronic pain, which is salient in a lot of contexts. He has adapted in different ways, such as biking and swimming instead of running and hiking. He is trying to convince doctors to get him a power chair to move around. Lavine also experiences cognitive and emotional disabilities, such as mild clinical depression, and a common symptom he experiences is brain fog, which makes it difficult for him to process words and thoughts. Sometimes he has to read a sentence multiple times to understand it. He wondered at the insane pace of his life before disability, as he had taken on multiple Advanced Placement courses and extracurricular activities.
Stabbe is hard of hearing, or Deaf. He uses a combination of American Sign Language and spoken English to communicate. He said it was clear at around age 1 or 2 that he wasn’t developing language like other kids his age, but for some reason, he was never explicitly identified as hard of hearing until he was a preteen. In daily life, he uses whichever language best fits the situation.
Vazquez developed cerebral palsy due to oxygen deprivation at birth. He has speech impairments, is a wheelchair user and needs a personal assistant for many of his daily living tasks.
Morales is a wheelchair user due to having mast cell disease, which she acquired as a teenager, and it affects her autonomic nervous system. She had identified it as more of an illness rather than a disability until she came to UC Berkeley. The progressive nature of her disability means that she is constantly having conversations with herself about how to approach new disabling symptoms that keep coming up. So, her identity in relation to her disability is evolving. She feels that a lot of access issues arise due to not having access tools and health management strategies. A rare diagnosis has also meant a lack of community, so she had been delighted to meet Savin, who has similar issues.
Savin considers herself multiply disabled, as she has a number of chronic conditions. Her disabilities started in early childhood. This includes mobility impairment, making her a wheelchair user, as well as psychological disabilities. She has Ehlers-Danlos syndrome, which is a connective tissue disorder that makes her joints hypermobile. The combination of other conditions such as asthma and diabetes means that Savin needs around-the-clock care. She said disability is something she has to think about all the time due to its impact on her body’s organs. Studying at a school like UC Berkeley is difficult, but it does not compare to the work she does for access and survival as a person with disabilities.
Both Morales and Savin use service animals. Morales’ dog of 10 years died last November, so she now has a dog in training. The dog can retrieve things and act like a bracing harness so Morales can stand and walk short distances and transfer. The dog also alerts her if she is about to pass out. Savin has a cat called Stevie, who she fondly calls her teaching assistant. Stevie is able to perform the functions of a diabetic alert dog by jumping on Savin and licking her if her blood sugar drops. He also helps calm her, as she has post-traumatic stress disorder.
The COVID-19 conundrum
The COVID-19 pandemic has created tremendous challenges for the disability community, but it has also resulted in some surprising silver linings.
Morales pointed to the feelings of isolation as a major challenge for the disability population, which is only exacerbated by the pandemic. The ASUC Disabled Students Commission, which Morales chairs, had hoped to address this isolation by providing a community hub with the newly allocated and hard-fought-for Disability Cultural Center in the Hearst Field Annex. Of course, with the pandemic, that space is not available. In the meantime, the commission members are trying to maintain the momentum through community-building activities, socials and town halls held via Zoom.
A challenge for Lavine has been facilitating conversations around pandemic measures in his co-op, which currently houses 82 students. Some of them are immunocompromised.
The COVID-19 pandemic has created tremendous challenges for the disability community, but it has also resulted in some surprising silver linings.
The silver lining for Lavine is that the lockdown has given him a lot of free time, as he isn’t working his usual 10-14 hours every week at the library, and so he has been given the opportunity to reconnect with family and friends. The lockdown has also meant less chronic pain, as he does not have to move around so much.
Savin feels privileged because the pandemic has not impacted her fellowship as a graduate student — nor the health insurance it provides — and she still gets to teach from her home. She is also happy about not having to be in degrading situations such as fighting her way onto a bus to get to campus. Such situations can be degrading and energy-consuming when people roll their eyes in impatience as the wheelchair gets loaded and she gets strapped in, or when the bus driver decides to not stop at all for her.
Routine care has been the hardest for Savin, as outpatient care has been harder to access. The loss of physical therapy has meant pain. Some additional health issues have meant she has had to wait for long times outside the Tang Center despite the presence of terrible air quality.
What really came out of this conversation was that the disability community was already constantly having to adapt and come up with creative solutions, so the change to Zoom instruction was just another transition.
Both Savin and Morales acknowledged that remote instruction still has access issues, but they also pointed to the hypocrisy surrounding disability accessibility. The disability community has always been told that remote instruction was impossible, such as when Savin asked if she could view her statistics lectures remotely as it was difficult for her to travel to an early morning class. But as the pandemic has demonstrated, compromises are always possible when there is enough will to carry them out. They hope that the silver linings will continue to benefit at least some of the disability community in the post-pandemic world as many workplaces are moving online.
But Morales wondered whether this trend will address the underlying systemic ableism. Who gets to decide who will work remotely and who will not as the disability and low-income populations, as well as communities of color, continue to be less protected?
The ADA generation
A common response to the question of what the existence of a law like the ADA meant to each student was that it means everything. It starts with access, whether it’s physical access to buildings or access to educational accommodations, such as a reduced course load or a pen that records lectures. But beyond that, Morales said it gave her time to think about her identity instead of always being in survival mode. It has shown that we can be powerful and capable individuals and have the ability to change. Savin added that our generation deserves to be included, and the ADA is what gives us the drive and the ability to demand that.
Students were also asked what they would like to highlight or change if ADA were to be rewritten.
“[The ADA] has shown that we can be powerful and capable individuals and have the ability to change.” – Alena Morales
“We need our own version of affirmative action for low-income, Black and Brown folks. Honestly, they don’t have the same experience as a white disabled person,” Vazquez said.
Savin pointed out that the only way to achieve redress for ADA violations is via lawsuit, a course of action that is beyond the means of the disability community. She said she can’t count how many times others have remarked that what was being done to her was illegal and she’s had to reply, “Yeah, I know. What am I going to do? Am I going to sue?”
Lavine said he feels that, in addition to legal protections, there needs to be mass education and that the ADA needs to be more encompassing of issues such as homelessness and the intersectionality of race and gender. “The history is whitewashed. The people who took that space are predominantly white men,” Lavine said.
Morales highlighted that those with disabilities have to be included in every step of the process and that it would need to cover multiple fields, such as mental health, use of technology and invisible disabilities, and there needs to be conversations regarding police violence, Black autistic folks and marriage and reproductive rights. Essentially, no one should be falling through the cracks.
The best and worst of UC Berkeley
Hands down, Vazquez loves everything about UC Berkeley, from the awesome professors to the atmospheres of campus activities.
Morales loves the energy of campus, which she said is unique to UC Berkeley, and she wishes all students with disabilities could experience this, as it shapes one’s view of disability itself in an amazing way. The campus contains this rich disability community that is so opinionated, intersectional and intense.
The worst things about UC Berkeley for Morales, however, are the frustrations around organizing and the feeling that the administration seems to use its laurels in disability history as an excuse for inaction in the present. She pointed to the irony of campus administration being the antagonist during the time of Ed Roberts, who started the very first disability program for students: the Physically Disabled Students Program. Regarding his own admission, Roberts had been told by a campus official, “We’ve tried cripples before and it didn’t work.”
Morales said it feels like it’s still an “Alice in Wonderland” type of ordeal when trying to get your voice heard and be part of the solution for the community.
Lavine loves the co-ops, saying he had met his best friends there and has grown in more ways than he could have imagined. Connecting with other students with disabilities has helped empower his disability identity. The disability studies minor, especially Georgina Kleege’s class on disability memoirs, was a revelatory experience for him, as he realized that disability was a sociocultural identity that encompassed a history, resistance and community.
This question was harder for Stabbe, as he is a new graduate student. However, he pointed out that the best thing is the brilliance of his peers, who are bringing their full selves to the table, despite the Zoom fatigue. The worst aspects include the internet cutting out at the most inopportune times.
“There are also ongoing moments where I realize that UC Berkeley wasn’t designed for people like me. … The heart and soul of the student body is committed to dismantling those values and reshaping the future of our institution to best serve all of our needs, not just the needs of those who were able to be admitted when the school was established,” Stabbe said.
He misses the vibrant Deaf community back in Rochester, New York, and he hopes to reconnect with local communities after the pandemic.
For Savin, the best thing about campus is the people, especially those in the disability communities and faculty with whom she has formed connections. What has been frustrating is the systemic ableism she encounters, such as being assigned as a GSI to teach in a classroom that she can’t enter because there are stairs. There are also microaggressions, such as when people assume that as a wheelchair user, she must be lost rather than a GSI who is there to teach. Savin also pointed out that a majority of graduate-level tasks are almost faculty-like in nature in terms of research and teaching, but they do not have the protections that faculty get. At the same time, the Disabled Students’ Program, or DSP, cannot interfere in terms of accommodations, as these are seen as employment-related tasks. As a result, much of her initial years have been spent on advocating and developing these systems for graduate students with disabilities.
Disability rights are civil rights
Savin is encouraged by the changes she has seen on campus during the five years she has been here. She said people are often shocked to hear that there are disability access issues at a place like UC Berkeley, as it has a reputation and an association with the disability rights movement. “I think until the last couple of years it’s been largely invisibilized and kind of not discussed or acknowledged as a problem,” she said.
However, Savin feels that things are slowly improving with the hiring of an ADA compliance officer, a larger DSP, more disability studies faculty and even increased disability presence in The Daily Californian.
Many of these students have been actively advocating for disability on campus. Savin and Morales spearheaded the campaign for the cultural space, and Vazquez has been working on BIPOC and gender initiatives. There are other programs in the works. The students feel they have reached a catalyst point, allowing them to successfully handle more issues and welcome the involvement of more voices of students with disabilities.
Lavine, who has been spearheading the effort for more accessible programs at the Recreational Sports Facility, urged students with disabilities to get involved in organizing with any of the student organizations or the makerspace disability lab.
Morales gave the following advice to students with disabilities: “Know your rights as a disabled student so that you are able to advocate for yourself. You deserve to get access to everything that there is to offer on this rich, beautiful, prestigious campus. This … is crucial to making sure that you don’t slip through the next cracks. If you are comfortable, go to as many disability events as possible.”
Contact Hari Srinivasan at [email protected].