{"id":15333,"date":"2021-06-16T09:48:14","date_gmt":"2021-06-16T13:48:14","guid":{"rendered":"https:\/\/engineering.jhu.edu\/magazine-archive\/?p=15333"},"modified":"2021-06-16T09:48:14","modified_gmt":"2021-06-16T13:48:14","slug":"barrier-breakers","status":"publish","type":"post","link":"https:\/\/engineering.jhu.edu\/magazine-archive\/2021\/06\/barrier-breakers\/","title":{"rendered":"Barrier Breakers"},"content":{"rendered":"\"\"\n

What is a disability? For Isaac Diaz, a second-year chemical and biomolecular engineering<\/a> major from North Carolina, it is a mysterious illness that developed suddenly when he was 11, leaving him paralyzed. For Maryland native Fatima Ceesay \u201921, also majoring in chemical and biomolecular engineering, it is an anxiety disorder that only became apparent and started seriously interfering with her work after she came to Johns Hopkins.<\/p>\n

There is great diversity when it comes to conditions, from autism to mood disorders, from dyslexia to missing limbs, that can interfere with the ability to fully participate in university life. But different as their needs might be, both Diaz and Ceesay are ambitious students who refuse to be defined by their challenges. And they say the accommodations and philosophy of inclusion provided by Student Disability Services<\/a>, on the Homewood campus and university-wide, have helped make it possible for them to thrive.<\/p>\n

\"\"
Terri Massie-Burrell, director of Student Disability Services on the Homewood campus<\/figcaption><\/figure>\n

Their guide through the process is Terri Massie-Burrell, who heads disability services at Homewood and is currently serving the needs of some 700 students. Massie-Burrell acknowledges that the number of students with disabilities who would likely be eligible for services is probably far greater, but says that many fear being identified as disabled.<\/p>\n

\u201cOur goal is to change the way disability is seen\u2014not as an impairment, but as part of a student\u2019s unique identity, just like race and gender and class and all of the other differences that contribute to the richness of the culture,\u201d she says. \u201cAlso, it\u2019s only part of a student\u2019s identity and only part of their experience. You can have two students with the same disability, for instance, with very different needs.\u201d<\/p>\n

Massie-Burrell says many barriers aren\u2019t immediately obvious and often relate to other aspects of identity, like socioeconomic status or race.<\/p>\n

\u201cTo do our jobs well, we have to understand and serve the whole student. Suppose you are the first person in your family to go to college. What are the financial and social pressures you are experiencing?\u201d she says. \u201cWhat if you are deaf and a police officer asks you to stop, and it appears you ignore him because you didn\u2019t hear him? What if you are a tall African American male with autism in an encounter with the police?\u201d<\/p>\n

Massie-Burrell has had her own experience with barriers. She was born without one of her hands and uses a prosthesis. \u201cI often come to a door carrying a package and have to use that handicap button,\u201d she says. \u201cIt\u2019s amazing how many things require two hands.\u201d<\/p>\n

She says her job is intense, detail-oriented, and endlessly creative. The Centers for Disease Control and Prevention estimates that one in four adults has a disability, and anyone can develop a disability of some kind at any time. And though Massie-Burrell\u2019s office also serves as a resource for faculty and staff members who are looking for ways to better serve students, she says the best way to find out what students with disabilities need is to ask them.<\/p>\n

\u201cOne of the slogans of the disability community is \u2018Nothing about us without us,\u2019\u201d she says. \u201cWe have some very, very bright students here who want to be as involved as possible in making certain we are providing appropriate services.\u201d<\/p>\n

 <\/p>\n

Not \u2018Less Than\u2019<\/strong><\/h2>\n

For Ceesay, it took a while to come to terms with the fact that something was wrong. \u201cThings that were easy for me in high school were suddenly very difficult,\u201d she says. \u201cI was struggling with my course work, having trouble focusing, and developed really bad test anxiety, both leading up to the test and in the exam room. I would actually get chills and shortness of breath. I was having anxiety attacks without even knowing what they were.\u201d<\/p>\n

Reluctant to acknowledge what she was afraid would be the stigma of a disability, Ceesay tried other support services the university provides, including working with tutors and even a study consultant to help her manage her time.<\/p>\n

\u201cI was afraid to get diagnosed because I thought if I had a disability, I would always be \u2018less than,\u2019\u201d she says. \u201cBut my wonderful academic adviser, Denise Shipley, encouraged me to get tested because the university can\u2019t provide accommodations without documentation of a disability. So, I finally saw a professional and was diagnosed with generalized anxiety disorder, which allowed me to register with Student Disability Services, at which point
\nmy whole perspective changed.\u201d<\/p>\n

First, Ceesay got the accommodations she needed, including access to PowerPoint slides and notes as well as recorded lectures for each of her courses, which has become the norm during the COVID-19 pandemic (to the joy of other students who have trouble focusing). \u201cI don\u2019t panic when I zone out during a lecture because I can now go back over the material and really master it,\u201d she says.<\/p>\n

\"\"As for testing, the rustle of papers, the whispers, the small sounds other students might make to express their own worry or confusion, and even the awkwardness of lecture hall desks that don\u2019t quite fit her 5\u201911\u201d frame contributed to Ceesay\u2019s panic. Now she gets more time as needed and the chance to take tests in a quiet environment\u2014at home, during COVID-19, using technology that includes lockdown browsers all students are required to use when taking exams remotely to prevent cheating\u2014and when it becomes possible to do things on campus, in one of Homewood\u2019s recently expanded SDS testing rooms.<\/p>\n

Second, she discovered that she was far from the only person on the Homewood campus with a disability. She came to embrace the idea that, far from a stigma, disability is an aspect of identity, of our great human diversity, and deserves respect, accommodation, and care.<\/p>\n

\u201cBecause I had such a great experience with Student Disability Services,\u201d she says, \u201cI applied to become a student assistant at the Homewood office working with undergrads, and I have learned so much,\u201d she says. \u201cIt has challenged my ideas of what is \u2018normal,\u2019 and it\u2019s made me a lot more comfortable with the idea of having this so-called invisible disability.\u201d<\/p>\n

 <\/p>\n

Creating a Flexible Environment<\/strong><\/h2>\n
\"\"
Catherine Axe, executive director of JHU Student Disability Services<\/figcaption><\/figure>\n

When Catherine Axe was hired in March 2019 as JHU\u2019s first university-wide executive director for Student Disability Services, a big priority for students was relocating the Homewood campus office. At the time, it was on the third floor of Garland Hall, a building with only one elevator.<\/p>\n

\u201cThe SDS Homewood office has since moved to the first floor of Shaffer Hall to a larger space with an accessible, single-use restroom just across the hall,\u201d says Axe. \u201cThe new office also has expanded capacity to administer exams with accommodations and an area where students can wait for appointments or study. It was great to be able to relocate to a larger, more accessible, and functional space.\u201d<\/p>\n

Last year, Axe also hired an assistive technology\/alternate format specialist, Kamran Rasul. \u201cHaving Kamran on board is a lifesaver,\u201d says Allison Leventhal, the Student Disability Services coordinator for the Whiting School\u2019s Engineering for Professionals programs<\/a>. \u201cHe knows and understands the technology that\u2019s available, so he is able to work with me and the students I serve to solve their problems. I don\u2019t have to do that kind of research, which is not my expertise. Plus, he works with all of us\u2014students, staff, and faculty\u2014teaching us how to use these technologies.\u201d<\/p>\n

Leventhal is a great fan of JHU\u2019s Universal Design for Learning Initiative, spearheaded by faculty members, many of them engineers, who early on embraced the idea that teaching techniques should be as flexible as possible to accommodate the different ways students learn.<\/p>\n

\u201cHow can we make it so fewer people need accommodations because the environment we\u2019ve created is itself flexible?\u201d Leventhal says. \u201cSome of the technologies we recommend for students, like software that turns textbooks into audiobooks, are things I would have loved as a student, not because I identify as having ADHD, but because it\u2019s just cool.\u201d<\/p>\n

Other benefits of technology are more efficient ways to ensure that students get the accommodations they need, and Axe and her team have implemented a new university-wide database called Accommodate to do just that. \u201cIt was a major undertaking, and it\u2019s still in the early stages,\u201d she says, \u201cbut it should make it easier for students, and for faculty who need to coordinate exam accommodations. And we\u2019ve just begun to explore its potential.\u201d<\/p>\n

 <\/p>\n

\u2018Like Being in a Dream\u2019<\/strong>\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/h2>\n
\"\"
Issac Diaz, chemical and biomolecular engineering major<\/figcaption><\/figure>\n

Diaz, who will be a third-year student next year, says he appreciates the ease of using Student Disability Services.<\/p>\n

\u201cIt\u2019s really nice because they have a letter written up with all of your accommodations, and each semester, I just send that letter to each of my professors. Otherwise, I would have to email each professor and ask them for accommodations and, because I can\u2019t write and therefore use a scribe, which means it\u2019s from my mind to their hand, it would take a fair amount of time. So, it\u2019s a very effective system,\u201d he says. \u201cPlus, the people in the SDS office are really nice.\u201d<\/p>\n

In contrast to Ceesay, Diaz has been disabled since middle school. An active, athletic child, he loved sports, and he loved working with his hands, helping his father, who is a machinist, fabricate things and helping him to change the
\noil in their car.<\/p>\n

One Sunday when Diaz was 11, he was in church with his family, playing the piano for the service as usual, when suddenly he couldn\u2019t breathe, and his body stopped functioning. His father rushed him to the hospital, where he was put into a medically induced coma.<\/p>\n

\u201cTwo weeks later, I woke up and couldn\u2019t move,\u201d he says. \u201cIt was like being in a dream. It\u2019s one of the few times in my life I\u2019ve seen my father cry.\u201d<\/p>\n

No one was quite sure what was wrong. At first, he was diagnosed with Guillain-Barre syndrome, a rare disorder in which the body\u2019s immune system attacks the nerves. More recently, his JHU neurologist diagnosed him with acute flaccid myelitis, possibly caused by an enterovirus. But there is no known treatment, and Diaz has been a wheelchair user, without the use of his arms and legs, ever since.<\/p>\n

\u201cI was an outdoors kid, always moving,\u201d he says. \u201cWhen this happened, I really poured myself into my studies, especially science and math. I knew that education was the key to my future.\u201d<\/p>\n

Because he can\u2019t physically write, he worked on improving his memory to the point where he could do complex math equations in his head. He did so well in school that he was named one of the nation\u2019s 161 U.S. Presidential Scholars and was awarded a full scholarship to JHU. His high school classmates elected him prom king and voted that he deliver their graduation speech.<\/p>\n

Diaz would agree with Massie-Burrell that disability is only one\u2014and maybe not even the most important\u2014aspect of his identity. \u201cI know people see me in the chair, and that\u2019s the outside perspective,\u201d he says. \u201cBut I try not to dwell on it.\u201d<\/p>\n

He is the child of parents who emigrated from Mexico in 1995. He has one older brother, whom he adores, who is now working as a chemical engineer and was his inspiration to study engineering. He and his brother are the first in their family to go to college. \u201cOur parents don\u2019t have a lot of money, and it\u2019s obviously hard for me to get a job, so I rely a lot on the financial aid from school,\u201d he says. In fact, during COVID-19, his mother left her job and moved from their home in North Carolina to Baltimore to care for him because his parents worried about outside caregivers exposing him to the virus.<\/p>\n

\"\"
Study carrels, for student testing or studying, are just one of the offerings provided by the Office of Student Disability Services.<\/figcaption><\/figure>\n

Diaz finds the JHU campus very accessible, though he notices that many Baltimore streets lack curb cuts and says his friends can take shortcuts on campus\u2014up stairs, for instance\u2014that are impossible for him. Among his accommodations were an accessible dorm room (before COVID-19, when he relocated to a nearby apartment), an adaptive tray for his laptop, testing accommodations, and permission to leave class early to get to the next class on time.<\/p>\n

And though he is grateful for those accommodations, he doesn\u2019t expect to need them forever. AFM is a relatively new diagnosis, still poorly understood. Like Ceesay, he is majoring in chemical and biomolecular engineering. Ceesay says she chose the major because she has always been interested in medicine and wants to make a contribution to the field as an engineer. Diaz says he wants to do biomedical research. \u201cOne of the reasons I keep studying,\u201d he says, \u201cis that I want to find a way in the future to fix myself and other people suffering from paralysis.\u201d<\/p>\n

Leventhal says students like Ceesay and Diaz are her inspiration. \u201cThe reality is that our students at Hopkins are brilliant,\u201d she says. \u201cThey\u2019re the ones who are going to come up with the great inventions of our time. My colleagues and I in Student Disability Services are just trying to level the playing field for them, and I see that as our contribution to their incredible journeys.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

Like hundreds of students at Johns Hopkins who contend with disabilities, Isaac Diaz refuses to be defined by his challenges. Find out what steps the university is taking to help him and others flourish.<\/p>\n","protected":false},"author":4,"featured_media":15349,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[28],"tags":[],"class_list":["post-15333","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-features","issue-summer-2021"],"acf":[],"yoast_head":"\nBarrier Breakers - JHU Engineering Magazine<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/engineering.jhu.edu\/magazine-archive\/2021\/06\/barrier-breakers\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Barrier Breakers - JHU Engineering Magazine\" \/>\n<meta property=\"og:description\" content=\"Like hundreds of students at Johns Hopkins who contend with disabilities, Isaac Diaz refuses to be defined by his challenges. 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