Acceptance and identity with a disability

“May I join y’all at the mall after school?”

This query to my generational cohort had come in semi-seriousness from our teacher. The discussion had been to develop character while we developed a second language. “How do you respond to questions about yourself from the public? The acquired language version.”

My contribution, in translation: “Often I bypass the questions about my physical presentation because they go straight for their loot or gifts. I’m like a street performer on Grafton Street in Dublin earning tips without any instruments.”

I referenced two incidents that had happened within weeks of each other, across the United States, over the course of a busy, balmy summer.

Madison, Wisconsin.

I was in town visiting, and an alum of my pediatric care panel gave me a guided walking tour of the old haunts after supper. Someone kicking it on his porch bounded up off the swing to intercept my party passing by. He displaced my therapist, standing by me in order to get close enough to me to stuff this bouquet of pretty hefty denominations of dollar bills down the front of my chest. He winked at my mom and the therapist, “I can help,” and turned in for the night.

Later, in the hotel, we were speechless in the company of our local host, my former speech therapist. We had discovered that I had “made” quite a bit of cash, speculating how that transaction must have looked while ruminating on how to respond.

The gesture of granting the financial assistance deposited down my sweater in Madison presents me with particularly conflicting reactions now. I projected the image of a savvy all-American teen: sporting a long braided ponytail, who looked to be propositioned in front of her mom, and in this case, a speech therapist, all in the name of charity. I can organize an evening out or a tour of a nation’s capital, anticipating all my accommodations.

Acceptance and identity with a disability must go beyond charitable gestures.

Arlington National Cemetery, Virginia.

The nightly Changing of the Guard ceremony was about to commence. A tour bus drove up. Its pilgrims saw me sitting in my wheelchair in the windswept warm rain. They perceived me as vulnerable: my wheelchair was rapidly sinking into the ground as the weather turned it into quicksand. It would take park staff to hoist the chair out after the ceremony. Some of my people scrambled to cover my chair with plastic bags to avoid rust.

My cerebral palsy speech is unintelligible to some listeners. My expressions of intrigued amusement over the situation could be interpreted as startled upset about the thunderstorm. My self-agency can be lost in translation. 

When bystanders hear my vocalizations, they may not understand and are uncertain what constitutes communication. They noticed further how my own company manages my spasticity like they would operate a marionette. The upper extremities retract, then my parents put them back. They appear to guide ambulation by maneuvering my chair. I direct where I want to go, but this self-will isn’t always apparent.

As the pilgrims disembarked from the bus for ritualized proceedings at Arlington, they watched my routine unfold. They may have seen me as a blank slate who would be receptive to their agenda. Two dozen seniors lined up in rows of two. They were there to pin brooch angels on each side of the vest that I had selected as my determined sixteen-year-old secular fashion statement. My mom silently prayed.

Before I could complain or protest, she wanted the twenty-four pairs of angel wings that had invaded my new vest to whisk me up and away, like the Red Bull mascot. Maybe the assembled spectators looked to the angel pins to lift me up and out of the mud now, seizing the wheels of my chair like climbing vines. I had wanted these wings to flutter me away from this scene at the tourist destination that I’d chosen.

I have a speech synthesizer that could vocalize a definite “No!” or a gentler text-to-speech refusal. But there was no way my family would unveil any electronics in that weather. And so, under this awkward spotlight, the powerful, involuntary reflexes in my upper extremities took charge. My family had to hold my hand still when my personal arm’s-length bubble was abruptly broken. Thereby giving the ironic impression, I deserved moral support, and thus, more pins.

Having lived another sixteen and some more years, I now sense that the Samaritans shared noble intentions. Their methods of extending gratuity led to opposite perceptions of me, staging awkward, arbitrary public images imposed on me that didn’t reflect my identity.

After our homecoming that summer, this unsolicited attention skyrocketed. Somehow these encounters that started elsewhere tracked me home. At restaurants, strangers – other patrons and people passing by streetside -, would approach and just sit down at my family’s table. Some would administer my meal to me sans technical training or permission; some would offer to pay the entire bill, and some would offer to tell their entire life story.

Dropping in spontaneously to assume responsibility for feeding a disabled person presents liability and safety issues. Beyond that, not asking permission to join a stranger’s family dinner is crossing a basic boundary. The physical interventions that they initiate without asking for a green light pose an awkward imposition. They assume this righteous role for themselves without invitation or input from me, the disabled person, assuming that they can treat me in a way they would never treat another stranger. 

They most likely would not spontaneously approach and meddle with an able-bodied person, who would likely have them removed. When they think it’s okay to plop themselves down within my personal space, I feel like my agenda is eclipsed when I’m accompanied by my own circle of company (or not). I feel diminished, trivialized, like my trajectory is violated.

The foreign language teacher and the study group wanted to shadow me about town for the monetary benefits, jokingly. These class trips into the field of the public arena are constructive in that I’m surrounded by familiar company who model that they approach me like they would anyone else. They acknowledge and confirm my remarks, respond in turn, and verify consent if anyone requests assistance. Transmission of culture can help establish norms that put everyone on the same page.