The following interview with Ben Foss was originally published on the National Center for Learning Disabilities website in 2009.
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 Breimhorst 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.
“I was frustrated that all the useful information about learning disabilities was in books. This made about as much sense as having the wheelchair meeting upstairs.”
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 Times Square and see 10,000 people, there are likely 1,000 or more with LD there. Finding them through online communities like 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 environments. 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.
As the project manager for development of the Intel Reader, what were your main goals for developing this innovative tool? And, what makes it different from other assistive technologies that support reading?
I was frustrated with the existing tools. I used to wait three weeks to get my books in an audio format I could use, and this was at Stanford, a fancy school with lots of money. I wanted to be able to read right on the spot. In 2006 at Intel, I started playing with cameras and computers and realized that I could build a system that gave me independence, allowing me to point, shoot and listen to printed text.
My overall goal was to get the best technology into the hands of people who need it. Intel has brilliant scientists on staff and working with them to solve the technical issues allowed us to develop something portable you can carry with you. This means you can read on the go, reading a handout in class or a menu in a restaurant, as opposed to trying to lug around a flatbed scanner.
As an adult, you’ve been a passionate spokesman for those with dyslexia, and an avid promoter of the importance of self-advocacy. Tell us about your organization, Headstrong.
I started Headstrong in 2003 because I was frustrated that all the useful information about learning disabilities was in books. This made about as much sense as having the wheelchair meeting upstairs. We put this information into formats people in our community can use, like film. We made a national award-winning film, Headstrong, about the first person to win a civil rights victory in the area of dyslexia.
You can watch the film for free on the site. We also have forums for discussion, information on resources and a website that will read itself aloud to you with the click of a button. Overall, we are reframing this as a public policy and a civil rights issue.
How many people could we keep out of prison if we offered the right accommodations in schools, allowing people to get a high school diploma? How many more jobs could our economy produce if we trained people with LD to ask for what they need in the workplace? These are the questions we should be asking.
What are your top five tips for parents of kids with LD?
- Talk to your child early and often about what you know about their LD. Engage them, show them the numbers, reinforce that they are smart and they will do well.
- Get formal identification of their LD for your child. An education psychologist or a learning specialist at your school can point you to the right resources. If they do not want to offer testing, look for a way to get the documentation on your own. This can be expensive, but it is critical to get services, to understand your child’s specific profile and to establish a history for accommodation on testing.
- Use assistive technology such as books on tape or talking computers early and often. Exposing your child to language and getting them comfortable with the tools they will need helps them stay on grade level.
- Seek out mentors in the LD community for your child. Show them our films, reach out to other parents in your schools, look for local college mentoring programs and so on.
- Self-determination is the highest goal for your child. My parents told me I could go to Yale or win a Nobel Prize. Some of us can do great things and some of us cannot, but the key is that it should be up to the person with LD to decide what that looks like. Teach your child to think about themselves as agents of their own destiny.
What are some specific tips for teens and adults with LD?
Come out. It is critical that you experiment with being public about who you are and see what it feels like not to hide on this issue. It can be scary to tell people that you are part of a label that is associated with being lazy or stupid.
I have felt this sting. The day I turned in my thesis at Stanford Law School, a classmate laughed out loud at the registrar’s office because I had the term learning disabilities in my title. “They can’t articulate anything!” I looked at him and explained that I had a learning disability. He was embarrassed and apologized. I could have laughed with him and hid, but I would have been doing damage to myself.
The key to this is finding a community of people who get your experience. Tell your best friend about your experience. Tell your siblings. Work your way up to telling a teacher you trust. Then try a new teacher. Rehearse and develop a script that tells specifics, is honest and works for you. Eventually, you will be comfortable talking to strangers about it. And then other people will start coming to you, allowing you to be part of something larger. It is a good feeling and is the most important accommodation you can have.
As part of coming out about this, I like to show people the raw version of what it looks like when I write. Below is my last answer without the benefit of spell check, and the three passes I make through it with text to speech (think Stephen Hawking voices) reading it back to me to allow me to improve the grammar. In a public forum like this, there will also have been a copy edit by a non-LD person. See the raw version below to understand where I start on this stuff and remember—I have a JD/MBA from Stanford, and I spell terribly.
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