Q&A with Duke Alumni with Disabilities Affinity Group

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In July, The Graduate School published “Dimensions of Disability at Duke: Academics, Advocacy, Community, and Culture,” highlighting the various strands of disability advocacy at Duke in recent years. As a follow-up to that feature story, the Q&A below offers a deep dive into Duke Alumni with Disabilities, an affinity group formed in September 2023 that consists of students, faculty, and staff in addition to alumni. This Q&A features the voices of the following group members:

• Co-Founder Jaden Sacks, Alice M. Baldwin Scholar, Class of 2026
• Co-Founder Henry S. Friedman, M.D., James B. Powell, Jr. Distinguished Professor of Neuro-oncology, School of Medicine
• Co-Chair Lenore Hill, A.B.’00 Computer Science

Read on to learn about this recent addition to Duke’s alumni affinity groups and how they plan to make Duke a more accessible campus for generations of Duke affiliates.

Before we dive into your affinity group, could each of you briefly introduce yourselves?

Lenore Hill: I’m Trinity class of 2000—I graduated with a bachelor’s from the Department of Computer Science. I worked in IT for 18 years, and now I sell my jewelry on Etsy from my very accessible home.

Jaden Sacks: I'm a rising junior at Duke. I am on the pre-med track and studying neuroscience and religion. I want to be an orthopedic surgeon or a surgeon of some sort. I have osteogenesis imperfecta (OI) type I, and so that’s really what has motivated my interest in medicine and disability advocacy.

Henry Friedman: I've been at Duke for 43 years. I'm a neuro-oncologist and the deputy director of The Preston Robert Tisch Brain Tumor Center. I’m married to another academic, Joanne Kurtzberg, and we've raised our kids here. They've gone to Duke and then elsewhere. And I have a lot of sidebar passions outside of neuro-oncology. One, of course, is mentoring. I created a program called the Collegiate Athlete Premedical Experience (CAPE) with Allan Friedman which is for female athletes and some other select students who want to go to medical school. It's really a terrific program that’s unique in the country. I was introduced to Jaden through one of our patrons and actually got to meet her before she arrived at Duke.

What motivated you to form Duke Alumni with Disabilities?

Sacks:

As I mentioned, I have OI type I, which is the mildest form of OI. However, I've still broken about 25 bones throughout my life, so my fractures do happen often. I've learned that one day I'll be walking, and the next day I'll be using a knee scooter, wheelchair, or crutches. So, I’ve realized that I have this really unique and beneficial perspective to see the world from both able-bodied and disabled lenses and perspectives.

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Coming into college my freshman year, I had this catalyzing experience right off the bat. My first semester I was pretty healthy, and then in the first week of the second semester, I broke my leg and was on a knee scooter. I had to learn how to manage a fracture while no longer living at home and while living alone in an accessible room for the first time. It was very, very difficult to learn how to get from my East Campus dorm, with no elevator and a very inaccessible entrance, all the way to my organic chemistry lecture—which was probably a 10-minute walk, then up a 30-flight staircase, and down a hill from the main Duke Chapel area.

So, I reached out to the ADA office and received accommodations. I set up an accessibility van to pick me up. However, when I went out to the accessibility van, it was actually not accessible: it had four steps to get up into it. My leg was throbbing in pain, and I was already uncomfortable because I couldn't miss any more class, so I was returning to class just five days after the injury, and I couldn't even get into the van. I ended up having to hop up on one leg, which puts me at risk of a fracture in my other leg because I'm just really prone to stress fractures on the opposite side when I have injuries. And I had to carry my knee scooter on my lap. Plus, the accessibility van was not on schedule, so I had to miss a few classes.

There were also a few other challenges. For example, one of my classes was in the Divinity School building, which is a very old building that only has one elevator; the elevator was broken one day, and I couldn't make it to class because it was on the third floor. And then the ADA push buttons at the entrance of the Broadhead Center were often broken, as were the elevators in the Bryan Center. So, I definitely faced a few challenges throughout those four months of being on a knee scooter that I definitely would not have noticed if I had not been temporarily disabled. That was a really eye-opening time for me and showed me that there are so many challenges that people are just not aware of; and since then, I've had so many other friends get injured and say, “Jaden, oh my gosh, how do I get this accommodation,” or “I can't figure out how to get to this class,” or “Where's the accessible entrance for this?” And I’ve just realized there are all of these issues and challenges that still persist on Duke's campus, and that has really motivated me to take action and form this group.

What was the timeline for forming this group?

Sacks:

If I remember correctly, I believe I spoke with Henry about all these challenges in or around August 2023. And that’s when we were like, let's do this. We’d previously talked about disability on campus, so we thought it was really time to make this happen. So that’s when we started reaching out to form a board. We found Lenore in September, and we were accumulating board members throughout the fall of 2023. We had our application submitted and were awaiting clearance from Duke Alumni Engagement and Development.

Friedman:

And just to add to that—I didn't really understand her freshman year, but certainly did her sophomore year, that Jaden had faced some challenges that are obviously due to noncompliance issues pertaining to disability. And I witnessed this firsthand after she hurt her knee. She had come to our house for dinner, and when we tried taking her back, we couldn't get to her dorm because a campus security guard wouldn't let us go down Chapel Hill Drive simply because only buses could go down there. So Jaden had to walk back to her dorm on crutches, and that was just unacceptable. That was the last straw.

We formed this group because of the way people with disabilities are treated on campus. And yes, making Duke’s campus compliant with ADA requirements (the basic law of the land) is an expensive proposition, but that’s what’s needed. Now our affinity group has 15 board members, and we are here to spread the word and shake this place up.

Lenore, how did you come on board? Can you describe your role within the affinity group?

Hill:

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To provide a bit more background, I have the same bone condition as Jaden, but I have a severe type. I've used a wheelchair my entire life, including the four years I was on campus as a Duke undergraduate. So, it's interesting to me to hear about what it's like as a student now, given what it was like then. And one of the things that I’ve realized over time is that some of my biggest difficulties weren't actually with the buildings themselves and the things that have been around for hundreds of years. It's people just being inconsiderate, like trucks parking on and completely blocking the sidewalk so that I’m stuck, or people not fixing elevators or broken door buttons and things like that.

But as far as what motivated me to participate in this group: well, Henry asked me, and he's very compelling. I mean, how could I say no? (laughs) He’d actually gotten my name from Sue Wasiolek, the former dean of students, who is the next-door neighbor of my husband's grandmother. So, you know, it's a small world.

But I was interested in two things primarily: giving back to the disability community, because it's really not something that I've gotten to do before, and mentoring people who are already in the workforce or about to enter the workforce. I would like to get some feedback from our group’s membership to see what that mentorship would look like. But I think that, if I had been starting out with a similar support network, things would have been easier.

Sacks:

Adding on to that, something that motivated me or compelled me to my work on this team is the desire to create a mentorship network for people with disabilities who are entering college. Similar to what Lenore mentioned, when I was entering school, I had no idea how to ask for accommodations, and then I met someone who had the same condition that I did who was a few years older, and she was like, “Jaden, just set up all of these things, meet with these people ahead of time, because you never know when the next injury is going to happen.” And I am so beyond grateful that I did, because when I did have my first fracture in college, I had an accessible room, I had all the accommodations already set up, and I had already met with someone in the disability office. So that was really incredible, but I never would have known that if it weren't for community. So, I really hope that this affinity group will bring together a community of incoming Duke students, current Duke students, and alumni, to really create that mentorship network that lasts from before their time at Duke until years after.

Hill:

One thing I'd like to add there is: the reason that I was a lot better off when I was a student was because my dad was on the faculty and had already been at Duke for a couple of decades. I actually grew up on campus. Meanwhile, students who didn't know how to take advantage of of what was available would be up a creek, really. But at the same time, my dad didn't really want to rock the boat either, so he was only going to push so far.

While it’s technically an alumni group, what is the benefit of having current students, faculty, and staff also included in your affinity group? How did that multi-level membership come about?

Friedman:

So, it's actually sort of an after-effect. We picked the board through a number of different connections. And then afterwards, we saw the composition. It's not like we said, “We need all these different representatives. So, let's find them and put them onto the board.” The board was constructed, and we looked at it.

But as for what it means to have this composition—everybody's going to look at the world with their own experiences, both in terms of life experiences and where they are in life at that time. An undergraduate student, a staff member, an alum, and a graduate student all look at it differently. So, we now have a group that represents a lot of different arenas within Duke, but it wasn't by design. It was the end result of what was there when we formed the board.

Hill:

And potentially, if the group grows enough, the alumni could have influence to shape the campus in terms of the disability needs that are there now. That's my hope.

Sacks:

Yeah. Just to echo that, I think the beauty of having current students and some more recent alumni on the team is that we have people who have been involved with Duke and who have experienced Duke at all different times and in different ways. I think that has really brought a bunch of different perspectives to our discussions and to how we want to break up our objectives and goals as a team. Personally, for me, I'm really trying to help advocate for the disability studies minor and for more courses, because I'm a current student and that's really applicable to me and to the age group that I'm a part of. But then there are many other alumni who are more passionate and driven in other areas based off their experiences. So, I think that definitely adds to the fruitfulness of having such a diverse group of people on the board.

How often does the affinity group meet? Do you have any events planned or in the works?

Friedman:

In the fall, we're going to start a monthly Zoom. That was Lenore’s idea, and I’m just doing some of the leg work. But it’s her plan, and it’s a smart one.

Sacks:

Lenore and I also both attended the Third Annual All Affinity Group Social that was held at Duke back in June. And we had some discussion during one of the workshop sessions about what kind of other goals we have for the group. And one idea that we had was a book club for this fall—whether it’s a traditional book club or whether it's sending out magazine or journal articles that could be a great way to begin discussion amongst our board members.

Would you like to offer some reading recommendations, or works (regardless of medium) that have inspired you?

Sacks:

I have two recommendations. One would be the documentary Crip Camp that's on Netflix. I thought that was really powerful. There is a half-credit House course at Duke called Disability Narratives that I took my freshman spring semester that is taught by current students. (There are no whole-credit, faculty-taught disability classes right now.) And we were assigned to watch Crip Camp the second week of class, and that happened to be the week that I fractured my leg. So, I watched it while using my knee scooter, lying in bed with my leg throbbing above my heart, and it was just really, really powerful to watch. And then I ended up watching it like two other times that semester just because it was so, so incredibly meaningful. And now I actually teach the House course. I taught it this past year, and I'm going to continue to teach it for the next two years as well. So, hopefully I can help pave the way for that disability education at Duke.

My other book recommendation is Being Heumann, which is about Judith Heumann and her life as an activist who really paved the way for the ADA.

Hill:

There's one book that I read a number of years ago called Handle with Care. It's actually fiction, but one of the characters has osteogenesis imperfecta. And it’s very interesting.

Friedman:

I don't know that there's a specific book within the disability literature that I've read that would be on point. But I've done an extraordinarily deep review of everything that led to Title IX and the impact of Title IX. And while Title IX is not quite directly on point here, it is so pivotal for everything that has happened regarding women's rights in sports and a lot of other things. And that makes it a potentially potent tool for making progress.

I think about the disabilities minor, which has been tossed around for more than six years. Nobody knows what department or entity is going to pay for it. There’s an inexplicable lag time from the initial discussions of the minor to today.

Sacks:

Also, I was very interested in doing Program II—the “create your own your own major” program for undergraduates in Trinity College—because I was so interested in disability studies. I ended up deciding not to pursue that path and to go with the neuroscience major. But, when I was talking to people, there were over a dozen people just at Duke currently who have designed a disability studies major for themselves because one does not exist. And, in fact, when I was talking to the dean, she said that it has become so popular over the past few years and that there really is such a thirst to learn about this area of education. So it's definitely something that is wanted by many students at Duke.

Another idea that we had was to have the disability studies minor actually be a certificate program, which is basically a more interdisciplinary minor with two more classes. And so, if we were not able to create a disability studies department or house it within a currently existing department, then we thought this could be a great way to span sociology, cultural anthropology, psychology, and so many different disciplines that already exist. And we could utilize all of these cross-listings and visibilize these classes that already do cover disability studies but don’t have that label on them. So, we think a certificate could be a great way to fix that issue and hopefully expedite the process.

Friedman:

And I’ll add—it’s such a shame that Duke does not yet have a disability studies minor. We’re all waiting for it and there a number of institutions that already do offer one.

What is it that motivates you in your mentorship and advocacy work?

Friedman:

I’ve previously discussed this in an article for People Magazine, but it’s really quite simple: my dad died when I was 11, and I basically just had my mom. I grew up without a mentor for high school, college, and most of medical school. And I watched all my friends or people that I knew have those mentors, and so I’ve had this visceral need to fill that gap for others, which I’ve been doing since 1977 when I got my M.D. We’re talking 700+ mentees since that time, and the one and only price exacted from any of them is to pay it forward.

Hill:

So, there was a Department of Justice lawsuit in 1996, where Duke was shown to not be complying with the ADA. And without that lawsuit, which happened right before I matriculated, my experience at Duke would have been way different. So, I'm very thankful for the student who initiated that. And I just want everybody's experience at Duke to be better than the one I had. I mean, in many ways, I had a wonderful experience at Duke. I wouldn't trade it for anything. But I still would like it to be better for everyone else. You can always make things better.

Sacks:

For me, it's that feeling that I get whenever I connect with somebody over a shared experience. It's kind of this light bulb and feeling of joy that just kind of goes off in my heart. It's really kind of indescribable, but it's a really powerful feeling—whether it's connecting with someone else who has OI, since that’s a really rare condition, or whether it's talking to a friend who is on an e-scooter because of a sports injury or broke a bone and needs advice. There's just this feeling that I want to share whatever knowledge I have with other people and connect over that shared experience. That has really motivated me to want to build this community where all that knowledge is shared, is valuable, and is respected. And it can really help other people to live their lives in the best way possible. Just in my time at Duke, I'm now the first person that people go to for advice whenever they have an injury or break a bone. And that advice is purely from my own experience; I'm not a doctor (yet) or anything like that. It’s just the power of shared experiences and shared stories that keeps me motivated.

And I’d say that’s my primary goal or hope for this affinity group. I want to create a mentorship network that lasts from before a student’s time at Duke, all the way up until decades after they have left Duke. I want to keep them involved—sharing their stories, sharing their experiences, and just forming connections. I'm really excited to be a part of this and to be establishing this group now that will hopefully serve many future generations.