It’s A Circus: Balancing Acts Of Having A Disability By Katherine Schneider, Ph.D.

By Katherine Schneider, Ph.D.

Nobody sets out to stereotype others, but we all have stereotypes. Shorthand ways of processing a lot of information are useful, but can lead to unintentional harm. For those of you active seniors who may be developing disabilities or have friends who are, I’d like to share some stories about the challenges of stereotypes and the balancing act of having a disability and dealing with others’ reactions to it.  

During a recent week, I was patted and talked about as if I were a precocious four-year-old, had an offer to pray for me from a restaurant owner, and was called “expensive” because of disabled people’s accommodation costs. Each situation involved balancing Midwest politeness vs. confrontation, disclosing personal details, and just trying to live life, disability included, but not always centered.

I understand why many people with invisible disabilities do not disclose them, and in some cases don’t acknowledge them to themselves. Once you disclose, you get to deal with others’ perceptions of your disability and needs.  

A local, delicious ethnic restaurant owner initially wanted to put my Seeing Eye dog and me far away from all other diners. I worked to educate him about guide dogs (no, the dog would not be eating anything), just lying quietly by my side. The second time I went there, I was welcomed as a “sister,” but the owner was still concerned, seemingly wanting to feed the dog.  “No, thank you. The dog has already eaten.” The third time I was there, he lingered and chatted more and made a pressing offer to come to my house and pray for me. No offer to deliver food, just pray! 

I’m a religious person, but an offer from a stranger to pray for my healing from blindness offends me. I know it is kindly meant, but it assumes I want to be cured, and his prayers would be more efficacious than mine. I’m still puzzling over how to say “leave me alone with my meal and my friend” politely.

On another day, being patted literally and spoken about as if I were a cute four-year-old at a university event, where I was part of the program, left me feeling slimed. My “thank you” for coming was politely delivered because the person was a university guest, but it was not heartfelt!

At a county board event, I was called “good to have around because of my knowledge about what deaf and blind people need, but expensive.” Being called “expensive” because of accommodations needed by people with disabilities scares me. In these days of tight budgets, if groups of people like The Disabled are considered “expensive”, that may morph into “expendable”. It did in Nazi Germany and it did during Covid when disability status was sometimes used to prioritize someone lower on a list for scarce ventilators because of their disability. 

Stereotypes of being less capable, more costly, and needing healing are not new. Laws like the Americans with Disabilities Act can mandate structural changes like ramps, accessible websites, etc. But they can’t mandate attitude change. To help change attitudes, one can give information and have “brave” conversations about the personal effects of stereotypical views. These are labor-intensive and we humans are slow to change.

To counter stereotypes, one can give conflicting information. For example, for the “you’re expensive” comment, I could quote:

In a 2023 study, the median expenditure reported by employers for one-time costs was $300, while the median for employers reporting an annual accommodation cost was $3,750. Employers surveyed reported numerous benefits of making accommodations, including: retaining valuable employees and improving productivity and morale. But that doesn’t really work in a social situation.

A Brene Brown quote sums up the emotional part of the turmoil when trying to figure out a concise reply on the fly: 

 “Healing is a constant battle between your inner child who is scared and just wants safety, your inner teenager who is angry and just wants justice, and your current self who is tired and just wants peace.”

In the “expensive” situation, the child part of me just wanted to hide. The adolescent part of me wanted to rip her tongue out of her mouth, and the adult part of me just wanted to have everyone go back to comfortable chitchat as quickly as possible. I did have a “brave” conversation, but it’s too early to tell if the person calling me “expensive” changed her thinking.

My current style seems to be: make a bland remark in the immediate situation, retreat to my lair as quickly as possible, and consider from there whether further action would be helpful. In addition to prayer, a valued part of my safety net for these situations is the counsel of a few friends with whom I can debrief. They listen, empathize/sympathize, and offer opinions on my possible solutions, only when asked. Some of them have disabilities, so they understand, based on their own experiences. But for the ones who don’t, they have a valuable perspective of a nondisabled view of how my response will sound to a nondisabled person.  

When I decide to go back to the person making the remark, I try to ask, “Can we discuss this?” If they say yes, I  communicate why the remark was hurtful,  ask what they meant and brainstorm a better way to say it. Those “brave” conversations are a lot of work for both people and progress is made slowly.

An important part of my safety net is rewarding myself with fun, hobbies, and play. Making time for laughter, joy, gratitude, awe, and wonder helps get me back in balance.

A lady with dementia I was talking to, who was just figuring out that I was blind, asked, “Are you happy?” Without thinking, I said, “Yes, about 99% of the time”.  The circus of living with disabilities and people’s reactions to them will go on.  

Bring on the clowns!

Katherine Schneider, Ph.D. (blind from birth) is a retired clinical psychologist living in Eau Claire, WI with her tenth Seeing Eye dog. She has served on several boards, including the Eau Claire County Board, the Governor’s Committee for Persons with Disabilities, and the Benetech/Bookshare Board. In addition to numerous professional papers and articles, Katherine has published a memoir To the Left of Inspiration: Adventures in Living with Disabilities, a children’s book, Your Treasure Hunt: Disabilities and Finding Your Gold, and two books for seniors (half of whom will develop disabilities in later life), Occupying Aging: Delights, Disabilities and Daily Life, and Hope of the Crow: Tales of Occupying Aging. 

She originated the Schneider Family Book Awards for children’s books with disability content through the American Library Association and an award for superior journalism about disability issues through the Walter Cronkite School of Journalism at Arizona State University.

Locally, Katherine started the Access Eau Claire fund through the Eau Claire Community Foundation to help non-profit organizations work toward full inclusion of people with disabilities. She’s a passionate advocate for access for all to the good things of life, like chocolate, puzzles, and thrillers. Subscribe to her blog http://kathiecomments.wordpress.com for details.