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Hidden in Plain Sight: Disabilities at Stanford

“You have to get a GED.”

I suspect that few, if any, Stanford students ever received this pronouncement.  Yet there I was being told by my high school guidance counselor that the highest educational achievement I could hope for was a high school equivalence degree. This, after I had been expelled from my prep school for “being too sick.”

Why didn’t I just get a GED? A far better question is why my severe chronic illness led to the conclusion that a GED was my only option.

We need only to turn on the television to see that our society is obsessed with youth and beauty.

The flipside to this obsession is fear and abhorrence of illness and disability. The idea that children can suffer from disabilities is too horrifying for many to accept, so they refuse to deal with it. But denial cannot deny reality. At Stanford about 15 percent of undergraduates suffer from a disability, and 70 percent of those disabilities are “invisible.”  When, at age 11, I began suffering from mysterious stomach pains and crippling fatigue, I became an adolescent with a hidden disability.

It took years for me to be diagnosed with an autonomic nervous system disorder called Postural Orthostatic Tachycardia Syndrome (POTS); in that time I had become bedridden. My body had broken but my mind was still mine, and yet that was not enough for my prep school, my public school or my guidance counselors. Since I could not sit in a classroom for seven hours or expose myself to germs, I was told I could not hope to take advanced classes, graduate high school or apply to colleges.

I was lucky. I had parents who believed in me and found an alternative high school that was able to send a teacher to my house while I worked to improve my health. I will never be normal; my body will never be as strong as my peers’, but last fall I enrolled as a freshman at Stanford and now I am here. It’s a happy story — an uplifting story — but it is not a story that had a happy “THE END” banner crossing the screen when I came to campus. I still have and forever will have POTS and it affects me all day, every day.

But why does this matter? What does it have to do with you — the normal, healthy college student?

There is a lack of awareness at Stanford about the daily struggles of students with disabilities. The fact that I have to take a reduced course load and can’t party every night is baffling to many of my peers.

This lack of awareness is detrimental to students suffering from disabilities.  It is also a wasted opportunity for our classmates. Stanford students are future leaders in politics, technology, business, law, medicine and education, and it is particularly important that they understand the inherent potential of and limitations imposed on people with disabilities.

Stanford students are future educators who can ensure that sick kids don’t have to fight to fulfill their academic potential despite physical limitations. Stanford students are future inventors who can create technologies to allow the disabled to participate more fully in life. Stanford students are future politicians who can ensure that schools have the resources and information to understand why educating all students matters. Stanford students are future doctors who can help their patients realize that their illness doesn’t get to define them.

In the years since the Americans with Disabilities Act was passed great strides have been made in our country’s treatment of the disabled, but we have a long way to go. If the Stanford community were more aware of the challenges facing disabled students, Stanford grads would be more likely to use their intelligence, passion and world-class education to help this population.

Awareness won’t come out of thin air and it won’t come from a single op-ed. In order to take full advantage of our resources the University itself needs to make awareness a priority.

There are many ways Stanford could help.  The simplest would be to include disabled students at freshman orientation events such as FACES; not only a student with visible disability, but also a student who, like me, is constantly told “but you don’t look sick.”

Stanford has a wonderful Office of Accessible Education providing services that allow me and others like me to excel. The OAE, however, is fairly invisible until an acceptance letter arrives.  The University ought to celebrate its commitment to the disabled community, act proactively to attract talented students with disabilities and inspire other colleges to follow our lead.

Finally, it is crucially important for the University to make it clear that students receiving disability accommodations are not gaming the system. An analogy I use to explain the limitations of POTS is: Imagine you wake up each morning with 12 spoons. On a good day, each spoon counts for one full activity: breakfast/shower/getting dressed and to class, sitting in one class, completing one homework assignment.

On a bad day one spoon is required to get out of bed, another to eat breakfast, another to shower and another to get to class. Remember, you only have 12 spoons and when they are gone, they’re gone and you can’t replace them or bargain for another.

Imagine making this calculation all day, every day, and then reconsider if my living in graduate housing or getting extensions on an occasional essay is “pulling something off.” If students were aware of what living with a serious illness means there would be less ignorant comments, and more compassion.

As a member of a hidden community I think it is vital that our university see the value in systematically educating students about the reality of the disabled and chronically ill. This is not an abstract and far off issue. It is a problem that affects hundreds of thousands of Americans: young and old, rich and poor, and more of your classmates than you may think.

— Jen Ehrlich ’16

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