Q&A with STEM Professionals with Disabilities
In the current discussion on diversity and STEM, as with so many diversity initiatives, disability is usually excluded or thought of purely in terms of accessibility or accommodations.
On April 14, 2015, the STEM Career Showcase for Students with Disabilities took place at UC Berkeley’s Lawrence Hall of Science. The event, a joint project of the Smith-Kettlewell Eye Research Institute and the Lawrence Hall of Science, modeled itself after a STEM showcase organized by the North Carolina Museum of Natural Sciences.
The event featured a keynote speaker and a panel featuring people with disabilities currently working in various STEM fields. These panelists shared their experiences and gave attendees an understanding of the possibilities for careers in STEM for people with disabilities, in particular youth with disabilities. Attendees also had a chance to experience hands-on science demonstrations such as tactile math puzzles, and an opportunity to connect with role models in the field.
Panel discussion at the Lawrence Hall of Science. Left to right: Dr. Josh Miele, Ronit Mazzoni, Akhila Raju and Hoby Wedler.
Here are excerpts from interviews with three invited speakers to the STEM Career Showcase about their education, current work, and why people with disabilities are an undervalued and underrepresented group in STEM. Some of their answers have been condensed for space.
Keynote speaker: Ronit Mazzoni, genetic counselor at Santa Clara Valley Medical Center and a 2005 National Federation for the Blind scholarship winner.
Panelist: Dr. Josh Miele, Associate Director of the Smith-Kettlewell Rehabilitation Engineering Research Center on Blindness and Low-Vision, Principal Investigator of the Miele Lab.
Invited speaker: Alex Ghenis, Policy and Research Specialist at the World Institute on Disability currently researching how climate change will affect people with disabilities; and founder of New Earth Disability, a blog on disability, climate change, and sustainability.
Alice Wong [AW]: What excites you about the work you are doing? What accommodations or adaptations do you use, if any?
Ronit: I love working with people and genetic counseling is a very people-oriented field as well as very science-oriented. I like helping people understand their options when it comes to their medical care and I love the feeling of being able to help people. I use a lot of different accommodations from screen readers and Braille note-taking, to labeling charts with broiled index cards. I also have a computer program that will draw a pedigree, which is a visual representation of a person’s family tree which is drawn during every genetic counseling session. I also have used a hired reader to read me charts in a previous job.
Josh: I invent cool technologies that give blind and visually-impaired people better access to the information they need in order to do the things they want to do. I love it because it gives me a chance to play with really fun technology while improving my own life and the lives of my fellow blind people. The act of designing, building, experimenting, evaluating, and otherwise innovating is also thrilling to me. It’s like solving puzzles that have real impact in the world — my world. I use several different screen readers, Braille displays, phones and tablets with adaptive software, and a cane.
Alex: I love what I’m doing because it combines my passions for climate change issues and disability rights… It’s actually interesting, right out of college I was working in the energy storage field doing renewable energy policy – which was more of a “STEM” career… It was super exciting and I loved it because it was creating a greener grid that would be more resilient in the future. Now I’m working on those climate change and social justice issues more directly and I’m much happier with my job.
AW: Describe any challenges you faced during your education, training, and search for employment.
Ronit Mazzoni addresses the audience.
Ronit: My first challenge was convincing the graduate programs during my interviews that I would be capable of being a genetic counselor, even if I didn’t have all the answers as to how I would accomplish things at that moment. My next challenge was figuring out how to draw a pedigree independently. My biggest challenge by far has been convincing others that I am capable. I received a bad grade on one of my rotations due to close-mindedness about my abilities and it took me over a year to find my first job and over six months to find my second.
Josh: Simply too many to list… None of my books were ever available, getting notes was difficult and time consuming, managing readers was a job by itself, getting access to charts, tables, graphs, etc. was almost impossible, as was creating them.
AW: What are some common misconceptions and stereotypes regarding STEM education and careers for people with disabilities?
Ronit: People in general do not think people with disabilities are as capable of doing anything, this includes simple life skills like dressing, cleaning the house, picking out clothes, taking care of children, etc. If a person with a disability cannot do these things, how could they possibly do math or science? I believe people who are not disabled imagine themselves if they were disabled and could not imagine how they would accomplish these tasks, so they automatically think it’s not possible.
Josh: A lot of teachers think it’s going to be difficult to create an inclusive curriculum or to otherwise provide an accessible educational experience for students with disabilities. This is especially true in lab classes like bio or chemistry. The truth is that this attitude is more of a barrier than anything else. There are usually relatively simple ways of adapting activities and assignments to allow students with disabilities to participate.
Alex: The main thing is that people think that people with disabilities have trouble doing any jobs, STEM or not… People also view us as just not being sharp enough to do things that require hard skills… stereotypes keep us from pursuing STEM education and careers, they make it so that college admissions and hiring managers don’t let as many of us in, and then people in general don’t see us in those types of careers so the stereotypes get reinforced.
AW: One of the biggest barriers (in my opinion) is the sense of low expectations for students with disabilities — how can educators, parents, and society in general encourage students with disabilities who want to pursue their interests in STEM?
Ronit: I think it’s most important for students with disabilities to find others who have disabilities who have done it. That is the biggest and most effective way to prove that it’s possible. If you can’t find someone who has done it, think outside the box and be creative in solving problems.
Speaker and panel facilitator Dr. Joshua Miele at the event podium.
Josh: I’m not as worried about the students who are driven to succeed in STEM — they are likely to find a way. It’s the kids who don’t really care that much about school or who want to do the minimum of work to get by who are the most at risk. Non-disabled kids who do not have a passion for learning are often able to get enough out of their education to be able to succeed in a STEM career once the apathy of childhood wears off. Children with disabilities in this same situation are often allowed by similarly apathetic teachers and overwhelmed parents to isolate themselves from peers and learning such that they are at a severe disadvantage later. By the time the kids realize that they might be interested in a technical field it’s too late. Low expectations are at the core of it!
AW: What were your experiences like as a young student (before college) learning and experimenting with science? What barriers, if any, did you experience and how did you deal with them?
Ronit: I used a helper in all my science labs and learned to ask questions and get descriptions of what was happening. I asked for help a lot when things were visual and I didn’t understand concepts.
Josh: I had a lot of social problems as a blind and burned little kid. Many other kids treated me very badly and before high school I was constantly being bullied and getting into fist fights. At the same time, I was really lucky and had excellent resources, teachers, friends, and parents. Nobody that I cared about ever told me that there was *anything* I couldn’t do. I had a teacher who transcribed all of my assignments into Braille and drew all of my tactile graphics for me. I had teachers who realized I was smart and had high expectations of me. I had parents and relatives who were educated and could help me find answers to my questions and were devoted to my success. I had it so easy, and still it was pretty hard…
AW: With the numerous diversity efforts in STEM, what unique skills and perspectives do people with disabilities bring to these fields?
Ronit: I think creativity and perseverance are two things people with disabilities can bring to STEM fields. That is what I feel I can contribute the most to genetic counselors and patients I see.
Josh: I think it really depends on the specific field. In my case I help develop the technology used by other blind people. A sighted person simply would not have the same insight and understanding about the need, use cases, attitudes, and applications that I do as a blind researcher. I’m not sure if a disabled perspective has any impact on the pure sciences like theoretical physics, but it definitely can on applied sciences where people with disabilities will be the beneficiaries or recipients (or who will have to live with the barriers) of the tools and techniques being developed by STEM professionals.
Alex: STEM topics impact us more personally than able-bodied folks: most of us rely on medical equipment that relies on solid engineering and construction to work, not to mention functioning support systems like a solid electrical grid. So we can bring a perspective of how important STEM is to people out in the real world, and that carries extra passion along with it. As for skills, a lot of us spend time working with that same equipment, so we know the intricacies of engineering better than a lot of people… Insight is a valuable skill.
AW: How can STEM industry leaders, employers, and educators better recruit and accommodate people with disabilities into the workforce?
Ronit: I think being open-minded is the only barrier to people with disabilities being employed or doing well in school. I have only done well when people around me are open-minded and most of that is due to my perseverance and convincing them as best I can to give me a chance to prove my skills. This, however, is very difficult and can be very depressing. If people got more education about people with disabilities, perhaps disabled people wouldn’t have to work so hard to convince others.
Josh: Seek out qualified applicants with disabilities, hire them, and make sure they have the accommodations they need to contribute. We’re out here — just let us in and let us work!
Why We Need People with Disabilities in STEM
Many people assume that it’s not ‘safe’ or ‘accessible’ for students with a variety of disabilities to pursue STEM for study or career (or for pure enjoyment). With such a need to increase student engagement in science and the STEM workforce pipeline, students with disabilities can play a role in filling this need. Yet in the current discussion on diversity and STEM, as with so many diversity initiatives and programs in various fields, disability is usually excluded or thought of purely in terms of accessibility or accommodations.
Reimagining disability as diversity, here are some important points made by Ronit, Josh, and Alex on STEM and people with disabilities:
- Social attitudes and discrimination are barriers just as disabling as physical inaccessibility or lack of services.
- Low expectations of students with disabilities can have a detrimental effect, narrowing future life chances and options even further.
- Adapting activities, curricula, and assignments is not as difficult as it seems; it merely requires imagination, creativity and flexibility.
- People with disabilities have always been problem-solvers and adaptable in difficult situations; the outsider perspective can bring valuable insight to STEM fields.
- People with disabilities have had to prove themselves over and over again to their non-disabled counterparts that they can do the same work just for the opportunity to be considered or included.
- People with disabilities can provide unique viewpoints in all STEM fields, from their user experience to their skills and ability to ‘think outside the box.’
These barriers are very real and can profoundly shape the career paths of people with disabilities who otherwise would be involved in STEM. Heather De Mian (@MissJupiter1957 on Twitter), an independent videographer who uses a wheelchair, tweeted about her early interest in paleontology and forensic anthropology in a conversation on women and STEM with @AJStream on March 17, 2015:
Was going 2 B paleontologist, but Geo Dept decided 4 me I couldn’t attend required camp b/c of disability. #Disabled #WomenInSTEM
Then minored in forensic anthropology, but couldn’t major b/c required lab was not w/c accessible.
Viols of fed civil rights laws. Basically had “no cripples allowed” signs on science depts.
I should’ve been allowed 2 pursue career w/ dinosaurs or forensic facial reconstruction regardless of how I was born.
Despite federally-funded state unis like mine being required to make their programs accessible since 1977
Similar to Heather’s experiences from the 1990s, when I was in junior high and high school, I had to sit separately in my chemistry and biology classes because my wheelchair couldn’t fit under those high lab tables. This separation kept me from having hands-on experiences with experiments and other lab activities (not to mention the social distance from my classmates). I was relegated to the role of recording and observing while my lab partner had options to participate in all aspects of the coursework.
No student with a disability should be sidelined from science education or discouraged from pursuing a career in STEM — hopefully events like the STEM showcase, mentoring programs, internships, and a growing critical mass of people with disabilities in STEM can reverse this negative trend.
For an overview of the STEM Career Showcase with interviews from students with disabilities, read “Disability No Barrier to Science” by Sarah Hillenbrand in the Berkeley Science Review (April 17, 2015). The entire presentation, “STEM Career Showcase for Students with Disabilities,” can be watched on YouTube, published by The Lawrence Hall of Science.
Special thanks to the interviewees Ronit Mazzoni, Josh Miele, and Alex Ghenis for their participation and to Sherry Hsi, Research Director of the Lawrence Hall of Science and Katia Albanese of ePolicyWorks for their assistance.
This piece was originally published in Model View Culture 2015, Quarterly Two.