Skip the Special Voice, Please

I’m not a particularly sensitive person. I can handle most noises, textures, and tastes. But there is one sound that I just cannot stand.

That’s the sound of “special voice.”

On her blog, Beth Ryan defines special voice perfectly. She calls it “a weird combination of firm-nasty-baby voice” often used on disabled people. Especially children or elderly, and especially people with cognitive disabilities.

There is something about special voice that triggers me. It’s not just the condescending nature of talking to disabled people differently than everyone else. There’s something else, a reaction I get when I hear it, that activates childhood memories of my own.

It took me a while to figure out why I get so triggered by special voice, until I remembered a certain blindness program I used to attend growing up. And while there were many good things about that program, some of their staff tended to resort to exactly that special tone when speaking to students, particularly when trying to get them to comply with requests.

I don’t recall being spoken to in special voice (though it was probably used on me at some point early in my life). I do recall witnessing special voice used with others, and its use often predicted a meltdown in the listener. Over time, I came to associate special voice with very negative emotional responses.

I like Beth’s use of the term “special voice” because it carries similar pejorative connotations to the term “special needs.” As Beth explains, special voice is more than just baby-talking or infantilizing, though that is part of it. There is also this tinge of disapproval, this “pre-emptive reprimand” as part of special voice, and it is often combined with over-prompting. It’s like treating someone not just like a child, but like an errant child, even before they’ve messed up. It is a tone that disregards the agency and autonomy of the listener. Too often, it then escalates to a full-on reprimand when the listener doesn’t behave in line with the wishes of the speaker.

Notably, special voice is not the same thing as using accessible speech to accommodate specific needs. For example, some listeners need to have things repeated, enunciated, or spoken in simplified vocabulary in order to optimize processing and comprehension. You can make these accommodations on a case-by-case basis, without infantilizing the listener.

I don’t think special voice is used deliberately. But our vocal tones can be a window into how we are feeling. If we feel anxious, stressed, or challenged by disabled people over whom we hold power, we may be inclined to use speech patterns that assert control rather than respect. If we expect someone to be difficult, or not to understand what we are saying, those expectations can come through in our verbal and nonverbal behavior.

If you think you may be guilty of special voice in your interactions with one or more disabled people, perhaps get some feedback from a trusted source. Perhaps you may even audio-record yourself (with the permission of your listener). I hate hearing my own recorded voice almost as much as I hate hearing special voice, but I do think this is a case where listening to a self-recording can be helpful, particularly if you work professionally with disabled people

If you interact with one or more disabled people regularly, you might consider an exercise. Think of one person in your life, past or present, who always made you feel loved, respected, and valued. This could be a parent or grandparent, another relative, a teacher, mentor, or friend. Really cement this person’s image in your mind’s eye and your mind’s ear. Think about things this person said to you to make you feel loved and respected, and the tone and body language they used. Then, in your interactions with disabled person(s), try to channel that person’s essence, mimic their demeanor as best you can. Try to help your child, student, client, peer, or other individual feel as loved and respected as you felt when interacting with this role model.

In other words, as Beth says: “Treat others how you would want to be treated.”

A Tale of Self-Sabotage

It was my last day of ninth grade, and I was taking my final final. A standardized algebra exam that was going to be graded on a curve. I went in with a solid A average and a toxic mix of confidence and laziness. Confident that my A was all but guaranteed, and lazy because this final was the last thing standing between me and my long-awaited summer break.

The questions were harder than expected. I didn’t think it would matter, and I just wanted to be done. So, I simply skipped three of the most challenging questions on the test. I printed the answers from my braille device, handed them in, and headed home.

The next day, my mom went to the high school without me for some reason, and offered to check my grades. She called me to relay news from my algebra teacher. My final exam score was one point below the cutoff to maintain my A average. Had I attempted even one of those three questions, I probably would have kept my A. But, due to my carelessness, I was about to earn my first-ever B.

My mom wasn’t upset, but I was. I hadn’t done it on purpose, at least not consciously. Earning good grades was important to me. I was kicking myself for being so reckless.

We could say I learned an important lesson about not getting too complacent, and trying hard up until the end. And we could leave it there. But, I sometimes reflect on what might have driven me, if unconsciously, to blow off that final exam

Less than a week earlier, I had a conversation with my algebra teacher. He told me that he was amazed and surprised by my strong performance in his class. When I asked him point-blank if he had expected me to struggle in his class because I was blind, he admitted he had.

I was a good student. Adults often overflowed with praise of my intellect. But at the age of 15, I had caught on to the shifted standard of inspiration porn. I could never tell if praise was legitimate, or if it was an exaggerated reaction when their low expectations were exceeded. I became attuned to the shifted standard that often hides under a veneer of amazement or awe in my abilities. The unspoken “You’re amazing….For a blind girl.”

When I reflect on that incident 20 years ago, I often wonder if I blew off that test to teach the teacher a lesson. He had voiced amazement that I could do well in his class. Perhaps I wanted to prove to him that I did well because I tried hard, not because I was amazing or inspiring. I wanted to show him that I was just human, and that if I quit trying, I would bomb the test just like everyone else.

Some might say, You do have to work harder in a math class when you’re blind. And perhaps that is true. But having never been sighted, I don’t compare my effort or innate ability to that of anyone else. What I do know is that like most people, I was successful when I put in my best effort. When my effort fell short, my achievement followed suit.

A few months later, I wrote a speech about blindness for my English class. Though I cringe now at much of the cliched writing, the following paragraph still rings true for me and many of my disabled brethren:

Unfortunately, some people hold very low expectations of a person who is blind, so activities as simple as walking down the street, attending public school, or competing in a speech tournament become amazing feats, requiring tremendous perseverance and courage. On the other hand, there are those who believe that the blind should be pitied, that blindness is a curse, or that the blind spend their lives trapped in depression and fear of the world. Both views can have serious negative effects on a blind person’s self-image. When you are always praised and commended, you are bound to get a big head, and any criticism will come as a shocking blow. But if you are always pitied and doubted, you can start to believe that you really are inferior and weak, and your confidence level falls from here (arms at chest level) down to the ground. Where is the middle ground? When can our actions be judged as is and not be distorted by the fact that we are blind, where our successes can be commended and our failures recognized, but ultimately, where we can all be respected as human beings?

So there you have it, from the (braille) pen of a teenager. For many of us, the greatest compliment you can give us is ordinary treatment. When we are treated like ordinary people, neither amazing nor deficient, we will be motivated to give our best, and to become our best selves.

Rest in Peace, Brian Miller

“My name is Brian Miller, and I am totally blind, and I love to travel, to explore, to be in motion. I love the thrill of departure, and the comfort of coming home. I’ve visited more than 65 countries on six continents so far, many of them dozens of times, over several decades.”

“I don’t think of myself as brave, or a risk-taker… But I also like to challenge myself, to deliberately put myself in strange places and force myself to puzzle my way out, or into wherever it is I need or want to go. Problem solving keeps me sharp, and brings me contentment and satisfaction, even as it also brings frustration and annoyance at times.”

“There are more places to visit than one can ever hope to get to in one lifetime. Beyond the mountains are more mountains.”

From Brian’s travel blog

“He was 52 and otherwise healthy. He was a friend to me and beloved by many all over the world. The world is a better place for having had him in it, and it is a poorer place for his absence.”

A friend writing about Brian after his death from COVID-19

“For him, this is yet another adventure, and I can just imagine him right now, sitting on an outdoor beer garden in heaven, turning to his neighbor and saying, ‘you know the interesting thing about heavenly beer is…’

Another friend writing about Brian

 The COVID-19 pandemic has upended our routines, and for many of us, our livelihoods. But the illness may still seem impersonal, that is, until it affects your born or chosen family. Earlier this week, my disabled family lost a vital member, a mentor, leader, scholar, and friend.

Brian was among the first wave of blind chhildren to attend public schools in the United States. He studied political science and history, completing a doctoral dissertation titled “Speaking for Themselves: The Blind Civil Rights Movement and the Battle for the Iowa Braille School” in 2001. But instead of working in academia, he served as a program analyst for the Rehabilitation Services Administration. Besides his passion for travel, he loved good books, good beer, and good company.

I first met Brian when I joined the National Federation of the Blind at the age of 18, but for many years we were mainly email acquaintances. Four years ago, though, Brian came to a brunch with some mutual friends. At the time, my husband and I were considering a move to Washington, DC, and Brian offered to help us get to know the area. Once our move was confirmed, I called Brian several times, overwhelmed by all the options of places to live and an entirely new transit system. Brian helped calm my nerves as he shared his insider knowledge of the area. When we arrived, while we were still living out of our suitcases, Brian invited us over for a dinner party. We had few other friends or family in the area, and it was powerful to feel so welcomed.

One thing that intimidated me most about DC was using the subway. I didn’t grow up around trains, and they had always made me a little nervous. A bus will stop in time if you get too close, or wait for you to board, but trains and subways have less control, plus their loud whistles and locomotives just kind of sound like impending doom. When I asked Brian how a blind person could safely, independently board the metro, he just said, “Oh, it’s no big deal. Just run your cane along the side of the train until you find the door. I do that all the time.” It sounded silly, but sure enough, I tried it and it worked. With his confidence, my fears gradually subsided.

In the hours after his death, my Facebook feed was flooded with similar stories. Friends whom Brian welcomed, mentored, and touched over the years. Tributes to his kindness, his wit and sense of humor, his intelligence, curiosity and adventure. The day after his passing, Brian was featured on the front page of the Washington Post.

Make no mistake, Brian’s death was a tragic loss for our community. But, I find some peace in knowing that his legacy will live on in the lives of everyone he touched, around the world.

“It’s a Spectrum” Doesn’t Mean What You Think [Repost]

“If only people knew what a spectrum is … Because they’re talking about autism all wrong.”

“Red is not ‘more spectrum’ than blue is.”

“All autistic people are affected in one way or another in most or all of these boxes—a rainbow of traits.”

“They think that the stranger we act, the ‘more autistic’ we are. We are asking you to stop. Ask us what we can and cannot do. Even if it doesn’t look as though we can understand.”

April has been branded “Autism Awareness Month” by organizations claiming to speak for autistic people and their families. In recent years, the neurodiversity community has rebranded April as Autism Acceptance Month, prioritizing information from autistic people themselves about the experience of autism.

So, I thought this would be a good time to share the below piece about the autism spectrum. Like many people, I had mistakenly thought of the autism spectrum as a linear gradient from mild to severe autism. But, as C.L. Lynch writes, it’s not that simple. Instead, “the spectrum” is more like a rainbow of traits, occurring in different combinations for every person.

“It’s a Spectrum” Doesn’t Mean What You Think

A Tribute to the Telephone

Back when I was in high school, most of my friends lived across town. We met at a summer and weekend program for blind kids that gathered us from all over the Phoenix valley. Though we hung out in person as much as we could, whether at the program events or at each other’s houses, sometimes we went for weeks without seeing each other, because meeting up often meant negotiating with family members to give us a ride. So, the phone became a lifeline.

On a typical Friday night, I could spend the whole evening chatting with four or five friends (separately or together), without leaving my bedroom. I might come home from school at 3, talk until 6, emerge for dinner and an hour of homework, then get back on the phone again until 11.

All kinds of hilarious and serious conversations were mediated over those telephone wires. We laughed, cried, shouted, flirted, vented anger and sadness and fear. We made up silly languages and watched shows together. Four of us rang in the new millennium together from our own houses, connected by the phone. We read each other articles from Seventeen Magazine. We played games, meditated, listened to music, argued and debated and fought, shared deep dreams for our futures and silly inside jokes in the same call.

I realize now why those phone calls were so important for my mental health. The phone put me on an equal footing with my peers. During audio conversations, everyone is blind. On the phone, there were no silent gestures, no ambiguity about who was talking to whom, nobody running off to play games I couldn’t play. I went to school to learn, but I talked on the phone to socialize and belong in ways that I never experienced at school

For me, the phone was the ultimate equalizer. Of course, for some people, the phone is hugely inaccessible. D/deaf people, people with speech impairments, and many autistic people struggle with phone calls. For these folks, text chatting may offer a similar oasis where the playing field is leveled. Telecommunication, whether oral or written in form, can often help us bypass barriers not only with getting to in-person meetings, but also with in-person communication. And, virtual communication can be a handy way of bringing disabled people together from across the globe.

Twenty years later, I’ve lost interest in phone calls. Like many millennials, I’ve gotten annoyed with voice mail (both sending and receiving) and wish people would just text instead. Sometimes after a long workday of communicating with my various bosses, coworkers, and clients, I’m done with conversation for the day. I’d rather watch a show or read a book or comment on a Facebook post instead of picking up the phone. Twenty years ago, I had no qualms about calling friends, family, even new acquaintances, as long as it was at a reasonable hour. Now, it feels rude to just call somebody without texting first to see if it’s a good time. It’s too easy to let time slip by, and let those old friendships dry up.

During the COVID-19 pandemic, physical meetings are being abandoned in favor of telecommunication. The pandemic has many unfortunate consequences that will disproportionately hit disabled people. But, one small positive is that telecommunication and virtual meetings are becoming mainstream, making it easier for disabled people to interact. As Kathleen Downes put it: “it is that society is finally embracing more than one definition of togetherness… and making joyful, wonderful, much needed outlets for people who can’t leave their homes.” Perhaps we will start to recognize the value of “virtual” encounters and connections. I hope we can keep working toward inclusion and away from isolation even after the pandemic clears. As for me, without so many distractions, maybe I’ll pick up the phone every once in a while.