I sat in the first lecture of Cy Plan 120, Community Planning and Public Policy, not knowing quite what to expect. This class was one of a kind in its subject matter, but what I was even more curious about was the instructor, Dr. Victor Pineda. I had never been taught by a disabled instructor before. The idea both intrigued and excited me.
As a nonverbal autistic, I know quite a number of students with varying disabilities. Growing up, the conversation around me was always about students with disabilities and how to make education and services more accessible for us. But, with our aspiration to higher education lies the implicit hope of employment after college ends. After all, most of us, disabled or not, want to lead a productive and meaningful life wherein we are contributing members of society.
Thus the idea of witnessing individuals with disabilities like Pineda at work opened up possibilities in my own mind. After all, UC Berkeley is where the disability rights movement began.
In the first lecture, Pineda lost no time in frankly discussing his disability with the class. A neuromuscular condition means he has weak muscles, and needs a wheelchair for mobility and a machine to help him breathe. He needs a personal assistant with him at all times to help him with daily living tasks.
I relished the confidence with which Pineda taught the class. His capability as a lecturer and knowledge of the subject matter was more than evident in his lectures, and for students his disability challenges became somewhat of an afterthought as the lecture went on.
I wondered how other disabled employees at UC Berkeley overcame perceptions about their disability. What does it take for a disabled employee to successfully navigate work life and be productive here on campus? With these questions in mind, I met with and interviewed several disabled employees, both faculty and staff, to explore their remarkable experiences.
A conversation with Dr. Kleege
I first met with Dr. Georgina Kleege of UC Berkeley’s English department. She is blind, and uses a white cane for navigation when walking. She also has to to rely on public transportation since she cannot drive. Whenever I request an interview, I often give a heads-up about my own poor eye contact due to the nature of my autism. When I mentioned this to Kleege, she immediately shot back a reply telling me not to worry — she isn’t so great at eye contact either.
In explaining her work life, Kleege delved into teaching strategies she employs in the classroom: “I’m always conscious on the first day of class that students may be apprehensive, that maybe they’ve never met a blind person before … (and) what it means to be the student of a blind professor,” said Kleege. Her game plan is to start off with a set speech with concrete examples as to how her disability will affect her students. Kleege’s description was in line with what I’d observed in Pineda’s class, of how disabled faculty get their students to focus on their ability — in their field and in the classroom — rather than on their disability.
As an example, Kleege tells students that she can’t see the expressions on their faces or if they’ve raised their hands. So they need to speak up.
“If somebody else wants to speak they can decide who wants to speak first. I ask them to say their name before they speak … It seems to work out alright,” she said.
It helps that her students have become used to submitting work electronically so Kleege can read their papers and assignments with her computer’s screen reader. Kleege has been at UC Berkeley since 2003, and gone are the days when instructors had to enter grades manually with a pencil. She notes, however, that for all of technology’s lauded progress, “Sometimes there is a need to catch up.” The occasional incompatibility of software employed by the campus with assistive devices she uses like the screen reader can make things all the more difficult.
Kleege points out that time can also be a source of stress for many individuals with disabilities. “Things take longer because we do things differently. So it can be frustrating to figure out what do I give up in my nonwork life so that I can meet the deadlines and demands of my job.”
“I’m always conscious on the first day of class that students may be apprehensive, that maybe they’ve never met a blind person before …” — Georgina Kleege
Kleege’s colleagues have been supportive for the most part. But her presence can still elicit surprise from a new colleague when they see her walking into the meeting room with a white cane, as they are not sure of how to interact with her. If she is handed a printed agenda in a committee meeting, she now does not hesitate to ask that person to read it out loud or to send the document to her electronically. It may cause a moment of embarrassment for the other person but in Kleege’s words, “they get over it.”
Ultimately, Kleege’s greatest joy from teaching at UC Berkeley are the students, whom she feels are exceptionally driven with regard to their studies and make the challenges worthwhile.
“They are here for a reason and that’s very motivating for me as a teacher,” said Kleege.
Listening in different ways
Echoing her motivations is Dr. Alastair Iles, an associate professor of environmental policy in the Department of Environmental Science, Policy and Management since 2007. I chatted via email with Iles. He was born deaf, and was fortunate to get an integrated education in Australia, where he was included in mainstream classes with support from teachers for the deaf. He went on to become the first deaf lawyer in Australia.
His deafness means he can’t hear conversations, music, or announcements at airports or train stations. Iles has to rely on captions to follow films and TV shows which I can only imagine must be frustrating as there is often a lag between the live action and the caption. “Most radio programs and podcasts are inaccessible. When I drive cars, I must keep a careful eye on what other drivers are doing, and whether emergency vehicles are approaching, using my mirrors. But, generally, I lead the same sort of life that most other people do. I just communicate and “listen” in different ways,” explained Iles.
The specific nature of their disability drives how each disabled faculty member teaches and interacts with their students and colleagues. Iles needs a captioner who transcribes what people are saying in real time using a form of stenography. That way, he can follow and respond to his students during lectures and class discussions. He tries to get teaching aides with ”lively delivery styles” to read out his lectures. When meeting his students, he communicates through written forms such as texts, handwritten notes or shared Google docs.
According to Iles, students seem to adjust quickly once he explains how his lectures and teaching style works, to the extent that they sometimes even assume he can do some “hearing” and try to call him rather than texting him.
In fact, when I sent Iles an interview request, he offered to answer my questions via email or a chat session. That actually worked better for me too since I am nonverbal, and therefore often at a disadvantage in conversations with nondisabled folks in terms of speed of typed output and my need to use text-to-speech software.
The end result of these different styles of instruction is actually a win-win for students too, as they are exposed to more diverse perspectives. My experience has been that most nondisabled students are only used to the traditional teaching model of learning with a verbal, sighted and otherwise nondisabled teacher. Learning with a different teaching style can further expand their mindset. This shift in thinking is really at the heart of understanding diversity in ability.
Iles draws attention to the stress-inducing time factor that Kleege referred to: “Unlike other faculty, I can’t just speak in classes from some notes. This means I must write out my lecture texts in full in advance, so that my teaching aide can read them for me. Preparation time is thus much more intensive.” A lecture is like writing a short paper and the entire semester of classes is like writing a book. Having to keep writing or typing all the time for even basic communication takes more energy and concentration.
The end result of these different styles of instruction is actually a win-win for students too, as they are exposed to more diverse perspectives.
“It can accumulate over time (and I’d be) very tired out by the end of semester,” added Iles.
Iles’s take on technology also resonates with that of Kleege. Iles can lip read, which is hard enough with diverse speaking styles or when people mumble. It’s even more challenging in meetings where people are not facing him or when multiple people are speaking. There is currently no technology that transcribes multiple speakers. Iles would love to see technology that lets him identify the speaker as well as transcribe in real time. Currently, he has to rely on the goodwill of students and faculty to help with note-taking during meetings.
Bridging the gap of support
The importance of supportive infrastructure, both literal and technological, cannot be overstated. As Pineda explains in class, accommodations are essential for many individuals with disabilities in order to stay productive. Pineda needs the computer to be at a certain height as it’s difficult for him to tilt his neck downward. The rooms he uses should not have steps, the bathroom should be spacious and there needs to be room in all the spaces he uses — lecture halls, corridors, bathrooms — for the assistant who accompanies him to help him with his physical limitations.
Interestingly, Pineda pointed to the cultural aspects of the built environment that can make one feel like they belong or feel excluded. You are emotionally at peace when you feel you belong and are included. An inaccessible space, on the other hand, can lead to frustration, sadness and anger. It can impact even a very basic requirement like whether you can use the restroom and you constantly worry if someone or something is going to make things more difficult.
Pineda is an UC Berkeley alumnus, having completed both his undergraduate and graduate degrees on campus. He has been employed at UC Berkeley since 2011. Berkeley has a long history of disability activism and in one of the classes, students were all handed flyers for the next meeting of the Student Coalition for Disability Rights, a campus student organization that Pineda had played a big part in during his student days. His pride at teaching at the birthplace of the inclusion movement and strengthening those ideals is evident.
Like Pineda, Ben Perez, an employee in the Office of Disability Compliance, is a wheelchair user due to a spinal cord injury. He broke his neck swimming in Venice Beach at the age of 16. “My disability was profoundly and rather suddenly a part of my life … (Now) I have limited upper body control, I have no control over my lower body. So I can move my arms and shoulders but I can’t move my fingers or hands very well.” Perez needs a personal assistant to help him with many of his daily living tasks, especially the physical tasks.
The Disability Compliance office is responsible for ensuring that the campus meets criteria set out in the Americans with Disabilities Act, and in Perez’s case, specifically in the area of physical architecture access.
Perez thinks he would not have ended up in this line of work if not for his disability. He feels that his disability is an asset for his line of work as he gets to demonstrate access barriers as both “someone with a disability and as an access expert.”
An individual with a disability often needs to structure his work day so as to manage his disability. For Perez, this has gotten easier over time to the extent that it has become a part of how he does his daily tasks. What has helped is the electronic nature of the modern workplace and being able to accomplish a lot through digital interaction. As for site inspections, he jokingly remarked that his wheelchair is a faster way to get across campus.
Perez thinks he would not have ended up in this line of work if not for his disability.
A UC Berkeley alumnus, Perez has come full circle from being a student receiving services through the Disabled Students Program to now helping current students receive them. “My joy is seeing students with disabilities move on and advance and go and leave the university and do interesting things … Not everybody gets to see some of the brightest students in the country — who face significant challenges above their peers — succeed so thoroughly, so regularly. That’s really special,” said Perez.
Roadblocks to employee accommodations
It’s hard enough to get and navigate accommodations as a student. What I came to realize in my conversations with the disabled staff and faculty at UC Berkeley is that the resources and supports for disabled employees are even fewer than those available to disabled students.
Access to technology itself can be different for employees versus students. By way of an example, the user interface designers of Cal Central and bCourses did not quite imagine how it might be navigated by blind faculty members like Kleege. She recounts frustrating back-and-forth emails with tech support to figure out compatibility of the software with her computer reader, as well as other navigation issues.
Iles explains the difference is that disabled students have some form of organized support through the Disabled Students Program, or DSP. The DSP acts as an intermediary between the students and faculty. It provides students with assistance in the form of assistive technology, testing and seating accommodations. There is no similar program for disabled faculty and staff. For instance, there was no plan in place to help Iles teach and participate in meetings during his first year at UC Berkeley. It took considerable time and advocacy to set up those resources from scratch since he is the first deaf professor at UC Berkeley. Iles is part of the Faculty Coalition for Disability Rights, an advocacy organization which is pushing for reforms and a central place that disabled employees can go to for advice and accomodations.
Kleege mirrors this sentiment in her comments and is hopeful at the steps the campus has recently taken in hiring Ella Callow as the new ADA/ Section 504 compliance officer. Callow will not just oversee the DSP but also act as the go-to person for disabled faculty and staff.
Apart from his work-related needs, Perez adds that his biggest challenge is finding affordable housing that is also wheelchair accessible. “When I was a student, there were lots of really well done, purposeful, highly accessible spaces — and that disappears when you leave the college world.” He wished more houses followed the principle of universal design which is the idea that any space should be built so as to be accessible to all — irrespective of age, ability or other factors. Many don’t realize the irony that disability is inevitable in our lives, for as Perez puts it: either you die young or get a disability at some point as you age.
Despite the strong efforts exerted by faculty and staff activists, actual change can be a frustratingly slow process. I also met with nondisabled Mark Brindle, who is the chairman of the Alliance for Disability Access in Berkeley. The staff organization is project-based, with one of the projects being advocacy for communication and accommodations on campus for disabled employees. “One of our biggest problems is budget issues in trying to get the software that we need for accommodations,“ said Brindle.
Iles points to an example of the campus cutting back on a large number of online classes and videos as it would be too costly to make them ADA compliant. “There have been a number of cases where university decisions have made us feel that disability continues to be invisible and neglected on our campus,” Iles added.
Brindle makes an interesting point in that an immediate supervisor usually provides accommodations only in areas where the disability impacts your actual work. Thus this system often fails to take into account the many events, presentations, speeches and ad hoc activities that hover just outside the scope of contractual employee duties but are ultimately necessary. The organization, as per Brindle’s remarks, help provide accommodations for situations like these.
The Alliance for Disability Access also holds employment open houses which helps the disabled community apply for jobs on campus. But Brindle feels it has been hard to get the word out to the community and get them to attend the event.
Many don’t realize the irony that disability is inevitable in our lives, for as Perez puts it: either you die young or get a disability at some point as you age.
Pineda’s take may offer a possible explanation as to what prevents many of the disabled from actively seeking employment — he says that the disabled still face a lot of disincentives in terms of how they navigate public supports and professional development.
The vote of confidence
The truth of the matter is that the disabled are a terribly underrepresented minority in the workforce. As Pineda explained in class, the Americans with Disabilities Act has been around since 1990 which provides additional layers of protection to eliminate potential barriers for job-seekers to a certain extent. Yet the disabled community faces high unemployment rates. According to the Bureau of Labor Statistics, only 19.1 percent of people with disabilities are employed compared to 65.9 percent for the nondisabled. The irony is that with reasonable modifications and accommodations, people with disabilities can do advanced work.
With these truths in mind, it is unfortunate that in the world at large, the first impression of a person with a disability, especially a visible disability, is that they are less than capable of working. This perception often acts as a gatekeeper and prevents those individuals from attaining meaningful work and opportunities. The disabled themselves may be discouraged from applying from the start if they feel they don’t stand a chance.
In reality, “I don’t think people consciously embody it .. (but) people will under-assess the capacity of people with disabilities,” remarked Perez.
In Perez’s account, UC Berkeley is a good place to work and he has been given great opportunities for advancement. The empowerment that comes for an individual with a disability to be productively employed cannot be understated. At times, however, when he feels he is not performing his best he ends up overperforming or, in his words, “overcompensating for his deficiencies.”
I can relate — the skills of the nondisabled are never questioned, while disabled folks often are in the continual loop of having to prove their worth with new people and situations. It can be exhausting. It becomes such a habit that you end up trying to over perform even at times when it is not needed. Perez adds that though disability is a spectrum, we often feel we must act as ambassadors for the entire disabled population as the nondisabled regard all disabled in pretty much the same way, again leading to overcompensation on our part.
Kleege echoes the sentiment that discrimination can be subtle. “It may just be that people say, ‘Oh I think this other candidate is better,’ and not mention the blindness at all. That’s something that you never know. You never know that’s happened. It’s not something that’s said to your face.”
And in other instances, that discrimination can be callously direct. Iles, on occasion, encounters other faculty members saying they wonder how his students talk with him, or students being rude toward him when he walks on campus while handwriting on a pad.
Parallels can be drawn to other movements in the area of discrimination and doubt. “We still have a long way to go, as far as equality, for example, the earnings of men and women. But we have an even longer way to go for the equality of disabled and nondisabled in our country. So it has to start somewhere,” explained Perez.
Iles comes back to the issue of how hard it is for disabled people to get into a university, thus shrinking the number of highly qualified disabled individuals available for jobs. “There could definitely be much more attention to recruiting and supporting disabled students as a priority underrepresented group … It calls for creative university programs to offer new opportunities to disabled people, making sure that they can survive and prosper in university, and connecting them to job opportunities later,” said Iles.
Each of the disabled employees had some advice for the disabled students at UC Berkeley who aspire to productive employment. Pineda stresses professional development and to make your disability your competitive advantage. Kleege stresses preparation in anticipating objections and answering them before they are articulated. Perez advises students to use their years at UC Berkeley to engage in things that are unfamiliar and to expect the unexpected, for it can truly define one’s career.
As more disabled individuals enter the workforce, participating in interviews and demonstrating their capability to counter bias and stereotype, Perez is hopeful about the movement toward public understanding of disability in the job arena.
“We are still in the phase of demonstrating … that we can and should be participating in decision-making and building processes of the tasks of society. We have to reach a critical mass of people engaging in the workforce so that it is no longer a scary thing,” said Perez.
In speaking similarly about future steps, Iles returned to the question of UC Berkeley. He celebrated the ability and power of a UC Berkeley degree in opening doors. He urges the current disabled students at UC Berkeley to “build negotiation skills to teach employers what they need and build up strength and confidence in demanding their rights.”
“They need to affirm their disability as part of who they are — not as something that is negative.”