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Home News Campus But you don’t look sick: living with an invisible disability
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But you don’t look sick: living with an invisible disability

By
Amie Schaeffer
-
September 16, 2019
0
Disabled parking signs line wall of a building at South City Campus
Americans with Disabilities Act Accessibility Guidelines mandate reserved parking spaces for people with disabilities. (Marcie Young Cancio)

I hate parking lots. They have become a trigger of my inner rage.

I have been known — to my children’s horror — to get in a shouting match during drop off and pick up at their schools. While not a proud parent moment, this has become a reactionary gesture.

What I have come to realize, is that I go into parking lots playing both the offense and the defense.

I have multiple sclerosis, an autoimmune disease that attacks your brain, spinal cord and ocular nerves. I was diagnosed at 28 years old.

At the time of onset, I had lost much of my mobility, my words were jumbled, I was having small seizures and my cognition was shot. I was dealing with a level of fatigue I didn’t know possible.

Now, with a lot of physical therapy and more meds than I can count, I am physically functional most days.

Disability Awareness Week events

  • “FIXED: The Science/Fiction of Human Enhancement”
  • Technology Fair
  • Ladies in Motion Panel
  • Keynote Speaker: Thomas J. Tobin

Disability Awareness Week begins Sept. 16 at Salt Lake Community College. According to Kelly Williamson, an accessibility advisor at the SLCC Disability Resource Center, most of the students they serve have a hidden disability, like attention deficit hyperactivity disorder (ADHD), autism or mental health issues.

“We tend to think of people who are blind or in a wheelchair, but this is not always the case,” explains Williamson, adding that hidden disabilities can carry a stigma that makes it difficult for people to reach out for help because “they have the option of not disclosing.”

It was a difficult decision to swallow my pride and admit that I needed a handicap parking permit. At first, I felt embarrassed. I could feel the stares.

Then came the confrontations.

People try to call me out because I’m not in a wheelchair, and I don’t have a cane or grey hair. People park in and behind handicap parking spots and fight me when I tell them to move.

What people can’t see is I have what is called “drop foot.” My right foot can drag and not clear things. I have tripped going up more stairs than I care to admit. The whole right side of my body is tight, spastic and feels like it is on fire.

My fatigue is still my biggest battle, and most days I lose.

This is just one of several diseases in which symptoms are not always visible.

According to Williamson, one goal of Disability Awareness Week is to level the playing field for those with disabilities by giving them the tools and resources they need. She says the center hopes to “normalize disability because it affects everyday people living everyday lives.”

As for me, I will continue to practice my breathing techniques and stay out of parking-lot brawls.

Students lined up to talk to their teacher
Students line up to talk to their teacher at the Jordan Campus. The Disability Resource Center fosters inclusion on campus by providing accommodations to students with disabilities. (Courtesy of the Disability Resource Center)
Editor’s note: This story has been updated.
  • TAGS
  • Amie Schaeffer
  • Disability Awareness Week
  • Disability Resource Center
  • first-person essays
  • Kelly Williamson
  • Multiple Sclerosis
  • Salt Lake Community College
  • students with disabilities
Amie Schaeffer

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