I Am What Disability Looks Like

Stereotypes exist around almost every health condition, and a few months ago I learned that I do not fit the profile of what a disabled person “should” look like.

I am a school teacher on disability due to peripheral neuropathy and a rare disease called erythromelalgia. These conditions cause intense burning, tingling, swelling, weakness, and redness in my legs and feet. Anything that touches my feet exacerbates the pain. This makes wearing shoes and socks nearly impossible. Standing causes my legs to shake, and walking feels something akin to stepping on lava filled with fiery pins. Even sitting brings about intolerable aching. These days I do little more than lay on the couch with my feet up.

This is not an ideal situation for educating children. My most recent year in the classroom caused me more suffering and fatigue than I can adequately describe. I usually taught barefoot, and I always used a cane.

My daughter would pick me up at the end of the school day because driving can be problematic for me. After hobbling to the car, I would peel off my shoes and socks. Upon arriving home, my daughter would help me out of the car and walk me to my room where I could change into pajamas. After that, I would lay on the couch until morning — usually falling asleep for most of the evening due to the exhaustion of fighting chronic pain all day.

I love my school. The teachers, staff, and administrators support one another and always put the needs of children first. We have a program for students with significant support needs (SSN) that serves as a model for our state. Along with general education teachers, our school has special education teachers, paras, speech and language therapists, social workers, counselors, psychologists, physical therapists, occupational therapists, and several other experts who are attentive to a vast spectrum of human needs.

This is why a staff member stunned me by asking a bizarre question in the hallway after I had taken my students to music. “Why do you use a cane? You don’t look like you need one.”

The question and accompanying statement felt more accusatorial than inquisitive. No one had ever asked me that before, and certainly no one ever judged me for needing help walking. I never would have expected such an interrogation in my school environment where everyone was always respectful, understanding, and supportive.

I wanted to reply, “That’s none of your business.” I considered taking off my shoes and socks to display my inflamed and swollen feet. For a split second, I even considered saying, “Why are you so rude? You don’t look rude.” But I held my peace and calmly explained that I have a neurological disorder that causes pain, shaking, and weakness.

My explanation apparently satisfied her curiosity, and she jaunted down the hallway. It would have been nice if she had volunteered to help me make it back to my classroom. If she had asked some follow up questions or had attempted to make a personal connection, I might have concluded that she had an interest in building a friendship. Instead, I left the conversation feeling like an object of a judgmental investigation.

I still remain uncertain what someone needing a cane “should” look like, but for me it looks nearly invisible. I may need a wheelchair soon, and my primary care practitioner has already prescribed it. When I start using it, I wonder what people think someone in a wheelchair “ought” to look like.

I do not have a sign that flashes “rare disease.” Moreover, I feel no obligation to justify my health needs to gawking strangers. You never know the pain, suffering, and support needs of someone else. So please do not judge by outward appearance.