How Did They Get Here?

A book focusing on students with disabilities at Harvard challenges stereotypes and bias while highlighting the themes of their success

March 9, 2015
Tom Hehir

In his latest book, How Did You Get Here? Students with Disabilities and Their Journeys to Harvard, Professor Thomas Hehir tackles a subject that has occupied much of his life’s work: ensuring access, inclusion, and opportunity for all students regardless of their diagnoses.

Hehir, along with co-author Laura Schifter, Ed.M.'07, Ed.D.’14, identified consistent themes discovered in their interviews with more than a dozen students with disabilities who gained admittance to and graduated from one of the world’s most selective institutions. As noted in the book, the students’ journeys were neither easy nor without struggle, yet their innate drive and intellectual prowess made them examples of what is possible when assumptions around disability are defied. As Hehir says of his subjects, “There are all kinds of inspiring stories here.”

What percentages of students at Harvard are identified with disabilities? You mention that you've been surprised by the numbers.

I don't know the exact numbers … but students who receive accommodations here at the Ed School are as high as 15 percent. Some of those accommodations are due to recent disabilities, including recovery from surgery. I’ve also had students who have cancer and are receiving chemotherapy, and they get accommodations. For students who have had disabilities that were identified in childhood, I would say it is probably more than 5 percent. That would be my estimate. But I have no way in which to know for sure … I get a skewed sample because I teach courses in this area.

You focused on the stories of 13 graduate and undergraduate students. How were they chosen?

They were students that I had in class and they were students who had disabilities that were obvious by the primary grades…. I wanted students for whom disability had a clear impact on their education from the beginning. Several of them were students who were identified at birth or shortly thereafter.

How different was their experience at Harvard as compared with their typical peers? You mentioned that one of the featured students, Daniel, faced challenges in accommodations at Harvard College and felt more at home at the Ed School. What supports did he find here that might have eluded him elsewhere?

In Daniel's case — and this is the case with other students I've met — they’ve had significant difficulties getting accommodations at Harvard College. It's been the case particularly for students who have needed significant supports. In Daniel's case, it was something as simple as getting him a scribe to help him with his papers, because he can't use a pen. He can use a keyboard, but it's a difficult peck method. He can't keyboard like people who have normal motoric ability. That was an issue at Harvard College, and it was an issue that didn't get resolved until I appealed directly to President Faust. That's pretty outrageous.

Here at the Ed School, I think that there's just a different culture. I think the fact that most of us are educators, and most of our students have had students with disabilities in their classrooms, we have better support services here. The Access and Disability Services Office here really does a terrific job. The irony, and this is peculiar to Harvard, is the whole notion of 13 tubs. Everybody has their own approaches to disability support, and our youngest students, meaning our undergraduates, seem to have the most difficulty getting accommodations. I don't see the same thing at the Law School or the Business School or the Ed School. And I find that terribly ironic, that we expect 18-year-olds to have figured it all out whereas we support 30-year-olds.

Are there instances where supports can be a double-edged sword? There's a story that you share in the beginning of the book of one young woman who talks about an overwhelming amount of services that were provided to her. At one point, she said, "I think I'll just stick with the editing help, but I'm really okay in these other areas." Is that common?

There's a couple of students who were oversupported to the point where they didn't develop the ability to do things on their own that they could have developed. At that particular interview, one of the things that struck me was it wasn't until she was in my class that I really pushed her writing and her learning on how to be a competent writer. And she's a very competent writer, but she had always gotten supports because of her dyslexia. You can oversupport kids and that that was the case with her. I've had other students, maybe not profiled in the book, who have expected me to require less of them, which I won't do, because I'm not required by law to modify curriculum. I don't think it's the right thing to modify curriculum.

Most of the students in this book, either through their own drivenness or through the interventions of adults — either parents, teachers, or related services people, therapists and so forth — develop the strategies they needed to be successful: to be able to access education at a high level; to know how to handle the heavy reading load when they read at a very low rate; to learn how to manage pain, which was the case with one of the students in the book who has chronic pain due to his physical disabilities; or to learn how to manage anxiety, which is the case of two of the people in the book. These are things they had to learn to do to be successful, and they did.

You make it clear from the beginning of the book that these students are all different and that each of their stories is unique, yet you identified recurrent themes and framed each chapter around them. Talk a bit about those themes.

Laura Schifter and I wrote the book together. We spoke a lot about that in the process of writing the book and in trying to capture the unique experiences that all of the students had, as well as Laura herself, who's a dyslexic, and Wendy Harbour, who wrote the afterword, who is deaf. This is more than just those students; it's also the people who helped write the book.

Some themes were more prominent with certain students and not with others. If we look at the issue of disability as identity — which is one of the things we talk about in the book — and of students developing a sense of themselves as people with disabilities and integrating their disability into their overall personality, there were actually big differences on that dimension.

Such as?

It was between the students who had obvious visible disabilities, for whom disability was always part of who they were, and students who had invisible disabilities — students with dyslexia or anxiety disorders — who could pass as non-disabled people. They actually struggled more with integrating their disability into who they are.

We organized the book around the common themes that emerged in, maybe, two-thirds of the interviews, but not in the same way for each student. In writing the book, when we're talking about the issue of disability identify — and Laura has written a chapter about herself — that issue was incidental for some students because they've used a wheelchair all their lives, or they've been blind all their lives, whereas for some of the students for whom that was a struggle, they're highlighted more in that chapter.

Chapter One is called "My Mother." In every instance, did the mother or father play a critical role in her or his child's education? And if not, who did?

In all but one of our interviews, that was the case, to varying degrees. One of the students had minimal reference to his parents, and actually described them as dysfunctional. He came from a very low-income background and a lot of trauma. For that student, it really was teachers … he talks glowingly about the teachers who touched his life at school. It was one of the most interesting interviews and really profound — the role that these teachers played — and him understanding both his dyslexia as well as his intellectual gifts that the teachers were able to nurture. It was quite extraordinary and optimistic that teachers can have such an impact on an individual's life.

But for most … I'd say half the sample would have been in big trouble without very strong parent advocacy. That's not an optimistic part of the book in the sense that the expectation is that parents have to take extraordinary means for a dyslexic child to be successful in school. It means we haven't come as far as we should have. Some of the parents took extraordinary measures to make sure that their children were successful and that's an unrealistic expectation for parents. Some of these parents were able to do this because they were affluent, for instance, or because they were teachers themselves and worked in the school.

What happens for folks on the other end of the socioeconomic ladder?

For every child, regardless if they have a diagnosed disability and they need special attention, they have a right to that under federal law in K–12 education. In higher education, they have a right to reasonable accommodations and that's a very vague term. But increasingly, it's becoming less and less vague as more and more students in higher education are bringing actions against universities by filing complaints with the U.S. Department of Education’s Office for Civil Rights.

Let’s talk about self-advocacy. How important is it for students to learn how to serve as their own best representatives?

It's a very important thing. One of the things that people do not do in schools is talk about disability. They don't give kids words around their issues. The kids know they're struggling, or they know they're different, and being able to integrate that into their personality — that they know just because they're dyslexic doesn't mean they can't be a great author or a great scientist  — is important for kids to know early on. It's also important for kids to get a metacognitive understanding of the nature of their disability, to understand that "this is the most efficient way for me to learn." Most of these students learned that early, certainly by middle school … all but maybe one or two. For many of them, it's because people explicitly taught them … particularly for the dyslexics and the students that have other hidden disabilities, having a name for why they weren't learning how to read, and not allowing them to develop a negative assumption about their own capability, was really important.

You say you wrote this book to dispel the ableist myth that students with disabilities cannot achieve at high levels and to shed light on the harm caused by pernicious low expectations. What can be done from a child's earliest educational experience, either at home or at school, to promote what's possible for all children?

One is people not assuming that disability means inability to access education. We see this in national studies, that people are very, very quick to modify curriculum for kids and not as quick to provide accommodations. It should be the other way around. It should be accommodate first, and modification should only be done if the child is not intellectually able to handle the content due to an intellectual disability. And, even with many kids with intellectual disabilities, modification is not necessarily required, depending upon the course. Modification of curriculum should be a suspect practice, but it starts with attitude. It starts with the notion that, from the beginning, many people look at kids like Daniel and they assume he's incapable because he's got so much neurological stuff going on, because that's the nature of cerebral palsy. He couldn't speak for many years. He speaks quite well now because he's been given good speech therapy. In Daniel's case, he was very fortunate as a preschooler to have a teacher who recognized his intellectual capability, even though he couldn't speak. He also had supportive parents. Daniel's case is one where there were many adults in his life that made a big difference.

How Did You Get Here? Students with Disabilities and Their Journeys to Harvard is available through the Harvard Education Publishing Group. Readers interested in purchasing a digital version should visit Amazon or iBooks

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