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Interview With Ben Foss: How Self-Advocacy Can Lead to Innovation

Special needs stories-Special education stories

Ben Foss is currently director of access technology for Intel. He leads a team that makes tools for people with specific learning disabilities and others who have difficulty reading printed text. His experiences as an individual with dyslexia have motivated him to find new ways to help others with reading disabilities access information. He is also passionate about creating new opportunities for those with learning disabilities to connect with one another. He has an MBA and a law degree from Stanford University.


When was your learning disability first identified? How did your parents share this information with you?
I was identified in first grade. My mom was asked to come into the school and was seated at a desk with a box of tissue in case she burst into tears. She said, “I figured something was up. So what do we do?” They explained that they had just gotten new money—the first funds from IDEA were just reaching the schools at this time—and wanted to place me in special education.

My parents were very straightforward with me, making a point to involve me in the discussions. They talked to me about what dyslexia meant—that it meant I had trouble with reading, and that it didn’t mean I wasn’t smart. They also made a deal with me that I could act out in my room—even throwing things or wrecking my stuff—when I was angry over having failed a spelling test or sad about having to sit alone during reading time, but I needed to be respectful in school or elsewhere. This gave me space to express my frustration while still showing up to school ready to learn.



There was a time when you didn’t want people to know you had dyslexia. What changed your mind and how did you feel when you decided to be more open about it?
Throughout elementary and secondary education, I was militant about keeping it quiet. In college, I set up secret accommodations, working out a relationship with a writing teacher to sit and read my papers aloud to me to help me check for errors. This caused two problems. I got less help than I needed, meaning I spent late hours struggling through textbooks when books on tape could have helped. More importantly, I carried this as a dreaded secret, one that took emotional energy to hide.

The biggest turning point was in business school at Stanford. There I met a fellow MBA candidate named Mark Briemhorst who had no hands. He encouraged me to join a panel of people with disabilities to explain to the future leaders at our school that disabilities in the workplace take all forms. I learned from him that giving people context on how to deal with you as a person with a disability is critical. He sent a mail to everyone at the school explaining, “Hi, I am Mark. I have no hands. When you meet me, shake my wrist. If you see me in class, I do not need your help picking up my bag. I brought it in with me in the first place…” and so on. It showed me that if you explain who you are and what you need, people generally are open to it. If they are not, that’s on them to resolve.

When did you first start to play an active role in advocating for your own needs? Was there a particular experience early in your school career that helped you understand the importance of self-advocacy?
I was taught early that I had a say in what happened to me. Whether it was what clothes I wore or when I went to bed, my family let me have a say in how my world was set up. In school, I was invited to all my parent/teacher conferences. Sometimes advocating for myself meant making a tough call. When I got a D in Algebra in middle school, I was told I could progress if I worked hard the following year. Instead, I decided to repeat the year because I knew mastering Algebra would be important to all of my future math classes.

When I got to law school, I learned the real power of standing up for the right to accommodations. Often schools know they have an obligation to provide accommodations, but they do not know what you need. In my first year of law school I negotiated an agreement that let me have someone read my papers aloud to me in addition to using text-to-speech software where my computer read it aloud. I needed the person to spot homonyms—council v. counsel—in my essays and I had to have repeated meetings with the deans, signing a written pledge that I was not relying on this person to get help other than this.

We know it’s important for those with LD to build a “community of support.” What did your community of support look like when you were in school, and is this still a valuable resource for you today?
Support comes in many forms. Ideally, the first is family. My mother, father and brother were sounding boards for strategies. In college, I let some people know about my experience. It was important to offer examples and concrete anecdotes. Instead of saying, “I am dyslexic,” I’d say “I fax papers home to my mom to have her read them to me.” This gives tangible details that stick in people’s minds.

The hardest community to find is other people with LD. We are invisible to others, though I like to point out that if you look out in Time Square and see 10,000 people, there are likely 1,000 or more with LD there. Finding them through online communities like www.headstrongnation.org or campus mentoring programs is critical. There is a special bond between members of the community. We function like immigrants from the same place, with common experiences and challenges. If we can just come up with a national dish we might even apply for passports!

Despite your dyslexia, you’ve worked for the White House National Economic Council, and the Children’s Defense Fund, and you’ve earned graduate degrees from Stanford. How did you build the necessary confidence to thrive, despite the daily challenges of your LD?
Not despite dyslexia. Because of my dyslexia I functioned well in these professional environs. I learned to pay attention to what matters in an academic or a professional setting. I knew that I could not read an entire book, so I would prioritize, reading only the most important chapter. In the White House, no one has enough time, so being able to prioritize and delegate is critical. I also learned to engage people and understand their roles. This is how I navigated third grade. I understood that the resource room teacher was my ticket to getting through spelling tests, not the general ed classroom teacher. The same applied at the Children’s Defense Fund. The budget director of the organization is critical to supporting my budget requests, not the executive director, and so on.

 

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