Haben Girma

Good Afternoon, my name is Haben Girma. I live with both vision and hearing loss, and have been deafblind since about age five. When my parents enrolled me in the Oakland Public School District in California, IDEA had been influencing the education of students with disabilities for nearly twenty years. My parents did not have any special knowledge of disability other than personal experiences. They wanted me to succeed, they knew I would succeed, but the big question was: how? How does a blind child learn math? How should braille be taught? Fortunately for us, Glenview Elementary understood that it was the school’s responsibility to employ teachers who held the answers to my parents’ questions. Completely oblivious to all these concerns was little me. I waltzed into first grade proudly carrying my Beauty and the Beast lunchbox. One of the treasures of IDEA is that it provides children with disabilities the luxury of just being students.

For example, the teachers for the blind at my elementary school never said to me, “You have to learn braille because you’re blind and if you don’t learn braille you’re going to be one of the seventy percent of blind people who are unemployed.” Not at all. My teachers took such a positive approach to teaching braille that I had the privilege of just being a kid—no worries about the meaning of disability and troubling statistics. For one hour each day, I left my mainstream classes to play a game of guess the dots. The dot game gradually got more challenging, and when I finally developed a love for reading braille, I had a wonderful supply of Nancy Drew mystery books. Not until my teenage years did I become aware of the stigma attached to braille, and I’m grateful to have had excellently trained teachers to teach me to love braille.

The support our special education teachers provided extended well beyond the classroom. Given that many community members doubt the abilities of children with disabilities, the power of special education teachers to remove these barriers is invaluable. I remember my dad wanted to put me in some kind of extracurricular activity like music or dance, but he was worried that your average piano teacher wouldn’t know how to work with a child with a disability. When my dad talked to our special education teacher, she recommended a dance studio and went out of her way to talk with the dance instructor about making sure I could fully participate. I loved the class, and today, I’m a member of the Harvard Ballroom Dance Team.

The Saharan sun attacked my sunscreened skin. The 130-degree temperature was almost unbearable. I bent over and shoveled sand repeatedly, until exhaustion forced me to pass the shovel to the next member of my team. I had come to West Africa to help build a school for 800 children eager to learn. These eighteen days were among my most memorable experiences of triumphing over difficult obstacles, and as a deafblind woman I have certainly encountered many difficult obstacles. It required months of insistent self-advocacy to convince my Ethiopian father to let me volunteer abroad. His were valid worries: how would a girl with limited vision and hearing participate in a program that had little experience with students with disabilities? Through strong self-advocacy, I succeeded in both earning my father’s blessing and making a place for myself among the brick-making and culture-sharing.

High school is a time of change. When I joined buildOn my sophomore year of high school, I was searching for skills that would allow me to change the world. Before I joined buildOn, I asked myself whether a woman with disabilities could have a positive impact in the world. I shared my worries with Abby Hurst, the program leader at my high school. “So, can I really go to Mali? How exactly am I going to help build a school?” Her answer held optimism and determination, “We’ll find a way, we’ll figure it out. It’ll be an adventure.” Long after my memorable trip to Mali, buildOn’s spirit of optimism and determination has continued to propel me forward. My college admissions essay described how buildOn inspired me to study cultural anthropology, and as a result, I won a full-tuition scholarship at Lewis & Clark College. A few years later, in my law school application, I symbolized my commitment to public service through an anecdote from Mali. Thanks to the magic of Mali, I am now finishing my first year at Harvard Law School.

High school students stand waiting and ready to take on challenges that guide them into a productive adult life. When you give these students the opportunity to engage in meaningful community service, you give them the skills of leadership that will remain lifelong assets. Without the positive support I received from buildOn’s staff members or the volunteer opportunities in my community and abroad, I probably wouldn’t have survived Harvard Law or even met President Obama at the White House last summer. And it all started at fifteen, “I want to go to Africa and build a school.” I learned people with disabilities have the power to change the world. I learned courage. I learned my limitless limits. I would have never guessed back in high school that joining buildOn would have lead me to so many more great things. Thank you, and now please join me in welcoming the future buildOn alumai onto the stage.

Working to improve education for students with disabilities is important to me. My knowledge of special education has expanded through this summer’s internship with the US Department of Education’s Office for Civil Rights. A good quality education propels children towards productive adult lives. Throughout my educational journey, from elementary school in Oakland, California to law school in Cambridge, Massachusetts, supportive teachers and staff members ensured that my disability did not obstruct my education. A good quality education will manifest in various forms based on the strengths and limits of the individual student.

I identify as deafblind. Deafblindness encompasses a wide range of vision and hearing loss. Regardless of the level of deafness or the level of blindness, an individual that encounters dual sensory loss experiences a disability distinct from all the others. Teachers of deafblind students may turn to specialized training, state deafblind projects, and their own creativity to meet the needs of individual students. My involvement with DeafBlind Young Adults in Action, through the Helen Keller National Center, introduced me to the diversity within the deafblind community. Some of the deafblind participants communicated through tactile sign language, some used close-up visual signing, and others communicated by voice. When we met with Members of Congress to advocate on behalf of the deafblind community, we quickly learned to work with each other’s different communication styles. Those who were hard-of-hearing and blind felt confused by the occasional silence in the room-was someone signing or was everyone just quiet? I asked my interpreter to tell me, “Sarah is signing, voice interpretation will resume shortly,” or sometimes, “awkward silence.” Alerting me to a moment of awkwar silence allowed me to jump in and lead the discussion. The other partiicpants also found it helpful when interpreters described a silence. Among the deafblind participants, our shared experience of dual sensory loss allowed us to share our strategies and resources. The label deafblindness allows one to tap into a large resource of information and support networks. Information resources make a world of difference for deafblind students because deafblindness is a low incidence disability. Many deafblind students lack deafblind mentors because their communities don’t have other deafblind individuals. To this end, school districts must reach out to state deafblind projects to ensure that deafblind children have access to a good quality education. Maurice Belote from California Deafblind Services communicated with teachers at my elementary school to provide guidance in the education of a deafblind student.

When I started the first grade, I held an advantage that many deafblind students lacked. I entered a school district that already contained the resources to provide deafblind students with a free and appropriate public education. The Oakland Public School District employed deaf education specialists, teachers for the visually impaired, orientation and mobility instructors, braille specialists, and sign language interpreters. The District had also gained experience from the deafblind students that came before me. When my parents enrolled me in the school, the District shouldered the responsibilities of determining what accommodations I would need. At another less prepared school, I probably would not have received full access to an education.

My parents did not have any special knowledge of deafblindness other than personal experiences. They wanted me to succeed, they knew I would succeed, but the big question was: how? How does a blind child learn math? How should braille be taught? Fortunately for us, Glenview Elementary understood that it was the school’s responsibility to employ teachers who held the answers to my parents’ questions. When all the accommodations for a deafblind student are in place, the student has the luxury of just being a student.

Fundamental to a good quality education are dedicated teachers who create learning environments that fit the strengths and limits of an individual student. Although I had enough vision to read print with a magnifying machine, the teachers at my elementary school decided to teach me braille. Only about ten percent of blind students read braille because the benefits of braille are often overlooked. Due to the training my teachers received, they knew that braille would be the most effective reading method. For one hour each day, I left my mainstream classes to play a game of guess the dots. The dot game gradually got more challenging, and when I finally developed a love for reading braille, I had a wonderful supply of Nancy Drew mystery books. Not until my teenage years did I become aware of the stigma attached to braille, and I’m grateful to have had excellently trained teachers to teach me to love braille.

The support teachers provided extended well beyond the classroom. Given that many community members doubt the abilities of children with disabilities, the power of special education teachers to remove these barriers is invaluable. I remember my father wanted me to take piano or dance lessons, but he was worried that the average piano instructor wouldn’t know how to work with a child with a disability. When my father shared his concerns with Ms. Fran Deble, she recommended a dance studio and went out of her way to talk with the dance instructor about making sure I could fully participate. I loved the class, and my dancing has taken me to the Harvard Ballroom Dance Team.

Since the special education teachers exposed us to so many alternative techniques, we developed a strong sense that an alternative technique can be developed for every goal. These teachers never gave me a second to wonder: Can a deafblind person ski? How do you cook if you can’t see? They provided the answers to these small matters before I even thought to ask. So by the time I was ready to ask such questions, the only questions left were the big ones. Like, can a deafblind person get into Harvard Law School?

One of the best lessons I received from a special education teacher involved learning to take responsibility for my own education-a lesson that helped prepare me for college. There was a time during middle school when I would wonder, “Isn’t it strange that Mr. Smith didn’t assign homework, again?” The free time was nice, so I didn’t complain. Then one day Ms. Volkart, the teacher for the blind, told me that my progress report for that class was looking dismal. I felt utterly shocked. I always did the assignments. Ms. Volkart and I talked about it, and we discovered that some days I wouldn’t hear the assignment announced nor see them written on the board. She suggested that I check with the teacher at the end of each class. The plan worked, and several weeks later I received my first 4.00.

I entered high school with a sense of responsibility for my own education. My goal was to do well and move on to college. Leah Mitsuyoshi, Heather Walsh, and Suzanne Balmaceda were the three teachers for the blind at my high school. As a student, my job consisted of completing the reading and homework assignments, and that was it. I didn’t have to scan my books or wait weeks for the braille copy to arrive because Leah, Heather, and Suzanne worked closely with my mainstream teachers to provide me all the material in braille and on time. Occasionally one of my mainstream teachers would forget that a handout needed to be brailled, but I would have it by the end of the day thanks to Heather, Leah, and Suzanne.

When the time to transition to college arrived, I had already established a system for accessing classroom information. Unlike K-12, post-secondary institutions require students with disabilities to initiate academic adjustments. Through the preparation I received from my high school teachers, I felt confident contacting the disability service office at Lewis & Clark College to specify all the accommodations I would need. The Student Support Services Coordinator welcomed all my requests, and even went further to suggest additional ones. The college purchased a braille embosser so that by brailling the material on-site they could ensure that I received it in a timely manner. When a professor refused to allow academic adjustments, the Student Support Services Coordinator would communicate with the professor until we found a mutually beneficial solution. Since deafblindness is a low incidence disability, the perfect accommodation was not always known to me or the school. I currently use voice transliteration services in law school. I did not request voice transliteration in college because I had never heard of it, nor had the college. In my law school classes, voice transliterators sit in the back of the classroom and speak into a microphone that transmits their voices into earphones I wear. The VTs hold small masks over their mouths to prevent their voices from distracting other students. Through the microphone they relay auditory information as well as visual information, such as material written on the board. Law school relies heavily on class discussion and the Socratic method, which made voice transliteration services absolutely crucial. When I first proposed the idea to Harvard’s deaf services coordinator, Jody Steiner, she expanded the concept by incorporating her own experience of facilitating communication for the deafblind. Throughout the interactive process of requesting accommodations, staff at both Lewis & Clark and Harvard honored my requests.

In ways, deafblind students resemble pioneers. Since levels of vision and hearing differ from one individual to the next, the solutions that work for one deafblind student may not work for another. Students, teachers, and staff need to research solutions, or create new ones. While in K-12, the responsibility fell on my teachers to find the solutions that worked for me. Kids lack the knowledge and advocacy skills to determine how best to accommodate disabilities, so trained teachers are essential. By contrast, college and law school required an interactive process where I needed to initiate many of the requests for accommodations. Together, we addressed questions such as how does a deafblind student excel in advanced mathematics, study a foreign language, or mingle with attorneys at the law school’s professional networking event? At the law school’s networking event, I stationed myself at a central table with a braille display connected to a QWERTY keyboard. My interpreter at the time, Jody Steiner, scanned the room for attorneys not already engaged in conversation, introduced herself as my interpreter, and invited them to talk to me. Since the noise level of the room made it impossible to hear, the attorneys typed directly to me on the keyboard while I read their messages simultaneously on my braille display. Through our creativity and sense of adventure, we created an alternative strategy even for mingling at networking events. With the fast-paced development of technology, new communication methods will emerge for deafblind students. Due to the rarity of the disability, organizations for the deafblind and state deafblind projects will need to help disseminate information to students and teachers. In June I served as a mentor in an advocacy program for deafblind young adults. Next year, my mentees will serve as mentors for a new generation of deafblind leaders. With a good quality education, deafblind students grow to become advocates for themselves and advocates for others. To the wonderful teachers and staff who supported my education, thank you.

Thank you for having me here today. Some of the most well-known disability rights advocates have passed through the Perkins School for the Blind, most famous, of course, were Helen Keller and Anne Sullivan. They left Perkins intent on making the world a better place. Since that time, laws have been created to ensure that people with disabilities have full and equal access to services and opportunities. Unfortunately, many businesses, schools, and other institutions remain unaware of our civil rights. We still need Helen Kellers, we still need disability rights advocates. And what better place to find them than right here at Perkins?

Being a disability rights advocate starts with self-advocacy. There are two very important components to self-advocacy: the first is being able to educate people about your legal rights; the second requires creative problem-solving skills to find alternative techniques for accomplishing tasks. I’ll use stories from my own life to illustrate each point.

After graduating from high school in Oakland, California I attended Lewis & Clark College in Portland, Oregon. My college experience was good overall, except for some initial challenges with the cafeteria. The college cafeteria had several food stations that served different items each day, and the printed menu hung on the wall by the entrance. At first I asked people to read the menu to me. With the noise level in the cafeteria, hearing people read the menu proved near impossible. I then asked the cafeteria’s manager to email me a copy of the menu before each meal. Since the cafeteria always had their menus in electronic format, emailing the menus to me would only involve copying and pasting. The manager agreed to email me the menu since it seemed simple enough. I still remember the excitement of getting those first few emails. Instead of picking a station at random and taking whatever the staff behind the counter put on my plate, I could finally actually choose what I wanted to eat. If the menu said station three was serving fried rice and eggrolls, I could skip stations one and two and go straight to station three. And of course I was thrilled to have choices about dessert! Whenever the cafeteria emailed me the menu, life was delicious. But every other day they would forget. I stopped in their office one day to politely remind them that I needed those emails. They said they were very busy but would try to send the emails consistently. Unfortunately, they continued to forget to send the menu nearly every other day. As a busy student with a full load of classes, eating well was very important to me. I explained the situation to the heads of the Student Life Department and Student Support Services. They told me the cafeteria was operated by an outside company and was out of their control. So I wrote an email to the manager of the cafeteria explaining that since I paid to eat at the cafeteria like all the other students, I needed access to the menu so I could fully use the services I was paying for. The manager responded saying that the cafeteria was very busy, that they were doing me a big favor and that I should stop complaining and be more appreciative. I don’t know about you, but if there’s chocolate cake at station four and no one tells me, I’m definitely not feeling appreciative. Remembering a disability rights workshop I attended back in high school, I decided to invoke the power of the ADA. In my email response to the manager of the cafeteria, I cc’d several others in the management team to make sure they learned about the ADA. I explained that Title III of the ADA requires businesses to make reasonable accommodations for persons with disabilities; if the cafeteria refused to do this, I would sue.

To tell you the truth, I had no idea what I was saying. How exactly was I going to sue anyone? I couldn’t afford a lawyer. I could file a complaint with the Department of Justice, but what if they thought my issue was trivial? What if a judge decided that emailing me a menu before each meal was not a reasonable accommodation? Part of me was nervous and worried, but another part of me was excited. I had a dream of joining the civil rights movement, a dream of pushing aside more barriers for all students with disabilities.

While I was eating dinner the next day, the cafeteria manager came over to apologize and promise that I would receive menus for each meal in a timely manner. And you know what? He actually kept his promise! I couldn’t believe how much he’d changed, how much my life had changed, all because of the phrase, “I’m goanna sue.” The threat of a lawsuit seemed as powerful as actually filing a lawsuit. By invoking the ADA, I forced him to temporarily set aside his attitude toward blindness and instead consider whether my request was reasonable. He originally thought providing access for blind students was an act of charity, a favor he could do when he had some spare time. Slowly, the ADA is teaching people to change their attitude so that granting equal access to people with disabilities becomes the normative attitude.

Threatening to sue is a very effective strategy for combatting discrimination, but it is really only a last resort. Lawsuits are complicated, long, and expensive. Countless times I have requested and received accommodations through friendly discussions. The college I attended provided nearly every accommodation I needed and most of the staff was very welcoming.

The second component to self-advocacy is creative problem solving skills. Once you overcome discrimination, once someone has changed their attitude, you will need a technique for getting the job done. Technology is constantly providing new tools with which blind people can accomplish tasks. While some accommodations will require the development of complex software, such as VoiceOver on the iPhone, other times the solution is simple, like using braille labels to distinguish between similarly sized bottles. Growing up I had many wonderful teachers who taught me many of my most valuable skills: braille, cane travel, and an attitude that creative thinking would overcome any obstacle.

Several years ago I was part of a rock-climbing club for blind students. By feeling for handholds and footholds we would pull ourselves up the rock wall. We all learned to climb and belay. The belayer is the person who holds the climber’s ropes. To my surprise, the instructor told me I could not belay since I would not hear a climber telling me to lower him from twenty, thirty, forty feet in the air. Although I understood his concern for safety, I felt frustrated that the other blind students were allowed to belay and I was not.

The instructor could not think of an alternative technique for deafblind belayers, and unfortunately, I couldn’t think of any either. However, just because he and I couldn’t figure it out, didn’t mean someone else couldn’t. As in many other areas of life, if you can’t solve a problem you look for an expert in the field. If your bike breaks, you take it to the bike shop. Since I was looking for a rock climbing technique that would allow a deafblind person to safely belay, I contacted a rock-climbing expert. The solution we came up with was brilliant: when a climber is ready to come down, he tugs on the rope several times to send a clear signal to the belayer. Because the belayer is holding the rope on the other end, the belayer would instantly feel the signal.

Finding creative solutions for people with disabilities can be challenging. It’s easy to dismiss something as impossible. Many of you live with sighted family members, sighted teachers, and sighted friends; for this reason you might feel pressure to act as an expert on blindness. I want to remind all of you that you don’t have to be an expert on blindness. When you run into an obstacle, contact an expert in a related field who can help develop creative solutions.

Once you’ve learned to advocate for yourself, the natural next step is advocating for others. My experiences advocating for disability rights in Washington, D.C. finalized my commitment to a civil rights career. Through the organization called DeafBlind Young Adults in Action, we strategized the arguments we would use to persuade Members of Congress to increase funding for the Individuals with Disabilities Education Act, and to pass the 21st Century Communications and Video Accessibility Act—which successfully became law two months later. Winning the support of our nation’s lawmakers convinced me that I hold the potential to influence change at the national level. I remember sitting across from Senator Lisa Murkowski, explaining the dire fact that only 6% of deafblind children across the country have qualified special education teachers. As Senator Murkowski responded with attentive questions and supportive comments, I felt the future brighten for children with disabilities. The power of persons with disabilities to spearhead national change was further demonstrated when our group attended the Celebration of the 20th Anniversary of the ADA at the White House. Listening to President Obama argue that our nation cannot afford to lose the talents of persons with disabilities was incredibly inspiring. As I thanked President Obama for his speech, our hands met in a handshake that instilled me with the ethereal spirit of “Yes we can.”

We need more disability rights advocates, we need more Helen Kellers. When you leave Perkins and go on to get a job, go to college, or even to law school, remember that advocating for others starts with learning to advocate for yourself. When you assert your dreams, your needs, and your rights, opportunities will be limitless.