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In Search of Hope and Unity

CN: politics, discussion of violence, racism, ableism.

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“Many of us still know that love trumps hate. We need to stick together, to keep our voices loud in this democracy. I need to use my research skills in our country to bring evidence and reason back on stage where they belong. Trump’s idea of revolution isn’t the only kind of change we can have in America. It’s not too late.”

My Facebook post on the morning of November 9, 2016

Like many Americans, I have been deeply troubled by recent events. The deaths of George Floyd, Breonna Taylor, Ahmaud Arbery, and others whose names I don’t yet know. The brutal murders of Alejandro Ripley, a 9-year-old autistic boy whose mother drowned him and then tried to blame the killing on a black man, and Willow Dunn, a 4-year-old girl with Down syndrome who was left out to starve.

I am struggling for hope, struggling for answers, struggling to figure out how I, a disabled white woman, can fight for the justice that both my black and my disabled brothers and sisters deserve.

I was a totally blind white girl raised in a suburb that is almost 90% white and less than 2% black. My first education on racial differences came when I learned about Martin Luther King Jr. in elementary school. When I asked my parents the inevitable question, was I black or white, they were touched by my ignorance. For many years I thought that my blindness protected me from being racist. I realize now that none of us are immune to bias and stereotyping. Sure, I can’t see skin color, but I absorbed the same history, the same cultural teachings as my sighted peers. I am still susceptible to judge others by the characteristics I am able to observe or am told about. I acknowledge my privilege and the responsibility that comes with it.

I spent six years studying stereotyping, prejudice, and discrimination under leading researchers on racial bias in policing and other applied settings. I have a good idea of the universality of prejudice and its multiple sources, but I still struggle to figure out what we can do about it.

Yet I can’t live in despair for very long. As I searched for hope, I thought about the students in my youth mentoring program, students of all races and ethnicities, strengths and abilities, coming together in community. When I spoke to the students at our virtual meeting last weekend, I urged them not to settle for the label of “future leaders” so often given to young people. Instead, I encouraged them that they can all become leaders today, in the present. To find something, a cause or an idea, an area of need, and put it into action.

Last night, I listened to the “Pomp and Circumstance” graduation melody. I reflected on my three graduations, from high school, undergrad, and doctoral training. Each time I heard that song and walked across a stage, I felt the infinite freedom of the future as one chapter ended and a new one began. I felt that sense of open time and space extending ahead, and the power to shape it however I wished.

We aren’t ready to simply graduate from centuries of institutionalized racism and oppression. But each day is a new day. Collectively, we have the power to shape a new path. And I realize it’s not up to me to have the answers. It will take all of us together, pooling our diverse expertise and creativity, to come up with solutions and put them into practice. Just as I implore nondisabled people to center the lived experiences of disabled people, I recognize the need for me to step back and listen thoughtfully to others’ lived experiences with racial bias. I think part of the answer lies in celebrating each other’s differences, rather than simply ignoring them. I will put my vote toward local and national leaders who are willing to implement evidence-driven solutions. And I think we need to encourage our younger generations to share their fresh perspectives, energy, and hope.

The Impact of Disability Simulations [Reprint]

Many readers have come to this blog to learn about the impacts of disability simulations. Here is the transcript of a short talk I gave in July 2017 for parents of blind children. I describe our original blindness simulation study and some implications for practice, with a little humor, and in accessible language. Enjoy!

Originally published here

I’m going to talk today about the research that I did for my dissertation. It’s a dissertation, so I could probably talk for hours if you guys let me!

By way of background, I have been totally blind since birth. I have Leber’s congenital amaurosis (LCA). I always felt growing up that blindness was just an ordinary part of me. It was about as normal as being female. It was never something I gave a lot of thought to. It never really occurred to me to feel bad about my blindness or to see it as a limitation, except when other people felt that way.

Obviously, most people don’t see blindness as a normal characteristic. I decided to get my doctorate in social psychology because I wanted to understand better why so many people are afraid of blindness, have negative ideas about the abilities of blind people, and discriminate against blind people. I wanted to figure out why this happens so we can see what we can do about it.

A Framework of Theories

When I started graduate school I studied theories about human judgment and decision-making. I found some research findings that bear on where people’s attitudes about blindness come from. One of these is known as the impact bias. It’s the tendency to overestimate how strongly and for how long we will react to life events. For example, there have been studies in which people pretend that they have won the lottery. They’re asked to imagine that five years ago they won the lottery and to think about what their quality of life would be. Then the researchers asked actual lottery winners to describe their quality of life after five years, and they found that people overestimated how happy they would be. People don’t realize that eventually life gets back to normal. The high of winning the lottery doesn’t last forever.

People make the same mistake in the opposite direction about disabilities. When people imagine what it would be like to lose the ability to walk, they think it would be worse than it actually is. People tend to dwell on the beginning phases of a disability, when it’s really scary and they don’t have coping skills. They don’t realize that when you have a disability, eventually you adapt. That’s called the impact bias.

The other relevant theory is that when we think about other people’s experiences, we tend to use our own experience as a reference point. When sighted people think about blindness and try to imagine how blind people feel or perform everyday activities, to what extent do they try to put themselves in the shoes of blind people? Do they imagine being blind, imagine how they would feel, even close their eyes and imagine doing something in the dark in order to make a judgment about what blindness is like? Because of the impact bias, I predicted that sighted people would overestimate how bad blindness is because they tend to think about the beginning stages and how scary it is when you first close your eyes and try to do something without blindness skills.

Designing a Study

These findings really got me interested in studying blindness simulations. Simulations are activities in which people pretend to have disabilities, such as by wearing a blindfold and pretending to be blind. I discovered that simulations are popular among educators and others who are curious about blindness. I found that a lot of educators were confident that simulations are a great idea, that they promote empathy and understanding. I also noticed that a lot of blind people and others with disabilities were opposed to simulations. As a member of the Federation I was very interested in the tension between blind people and the professionals who work with us.

I designed a series of experiments and worked with my husband, Jason, who is sighted. We were in the same doctoral program, and we were dating at the time. We collaborated on an experiment. We had college students come into the psychology lab. By a random coin flip some were selected to wear a blindfold and others were not. We had a bunch of comparison groups. We had some who did nothing, we had some who did simulation tasks without any equipment on, and we had some who watched videos of other people doing simulations. The main comparison was between people who wore blindfolds and people who did not. We had our subjects do a series of tasks, including navigating a classroom and later on navigating a hallway with a zigzag in the middle. When they navigated the hallway they used canes, but we did not give them any cane instruction. We just said, “Use this cane to avoid running into obstacles.”

We also had people sort coins into piles, based on their denominations. That task was inspired by an incident when I dropped a bunch of coins and realized that a newly blind person might have a really hard time finding them. We had people pour a glass of water, and in one experiment we had them write their names on a chalkboard.

The subjects did all of these things, some with blindfolds on and some without. Afterwards all of the subjects filled out questionnaires. Because we were concerned about bias in the students’ responses, I was not allowed anywhere near the sessions. My presence might have an effect on how people responded. Jason, my husband, was in charge of managing the experiments. Either he ran them himself or he trained research assistants to run them.

Jason told me a lot of stories about how terrified, confused, and distressed the students were while they wore the blindfolds. One person actually ripped off the blindfold and said, “Thank God I’m not blind!” From where I sit, that’s really not a desirable outcome for an educational exercise! It reinforces people’s idea that they’re glad they’re not blind. They’re glad they’re not like me.

Questions and Answers

On the questionnaires the students answered questions about what they thought blindness was like in general. For instance, they had to write “Agree” or “Disagree” for the statement, “If I were blind, I would do anything to get my sight back.” We had the subjects rate emotional reactions, such as how often they thought blind people felt angry, sad, lonely, or scared. Also we had them rate blind people as a group regarding eight different activities. Some were professional activities such as being an elementary school teacher. We also had them rate blind people’s abilities to live in their own house or apartment. Blind people and sighted people were compared in their skills related to these activities. A ‘1’ indicated that blind people are much worse at performing the activity, a ‘4’ meant that they are equal to sighted people, and a ‘7’ meant that they are much better. We threw in a few decoy items, such as asking how good blind people are at recognizing voices and navigating in the dark. That way people could feel good about giving blind people some high scores, and they could be more honest about the other questions.

We found that the students who had been blindfolded felt that blindness was worse, that it was a more debilitating condition. They were more likely to agree with statements such as, “If I were blind, I would do anything to get my sight back.” They thought that blind people experience more negative emotions than sighted people do on a daily basis, particularly fear, loneliness, distress, confusion, and frustration. Incidentally, those were the feelings they themselves experienced when they had the blindfolds on.

Most importantly, when we looked at their ratings on various activities, subjects who had been blindfolded felt that blind people could not perform as well as sighted people, compared with the subjects who had not been blindfolded. For example, a higher percentage of the blindfolded students believed that blind people cannot live independently in their own houses or apartments, or at least not as well as a sighted person can.

Finally, when we looked more carefully at the mechanism behind these judgments, we asked students to imagine that they just became blind. We asked them to rate at six-month intervals how limiting blindness would be in their lives. They used a scale of 1 to 10, where 0 was not at all limiting, and 10 was as limiting as it could possibly get. They actually drew graphs to show how limiting blindness would be from immediately after to three years after. We found that basically everybody agreed that immediately after becoming blind it would be a 9 or a 10, very limiting. But the students who had not been blindfolded expected that over time blindness would get easier. The students who had been blindfolded also expected that blindness would get easier, but at a slower rate. When we looked at the predictions of how limited they would be three years after becoming blind, that number was significantly higher for the blindfolded students than it was for the unblindfolded students. The blindfolded students thought that their abilities and their quality of life would recover less over time compared with the control students who were not blindfolded.

These results told us that blindness simulations done the way we did them play into the impact bias. They get people hyper-focused on the initial minutes after becoming blind and lose track of the adaptations that happen over time. Consequently, when we asked people to judge how employable blind people are, how well they can teach elementary school, the blindfolded students thought that blind people would be more disabled.

Answers and Questions

Any good research project raises more questions than it answers. I think this project raises a lot of questions about what kind of blindfold simulation, if any, is beneficial. I think these results tell us that if you slap blindfolds on people and ask them to fend for themselves, and don’t give them any training or instruction or exposure to blind role models, these people are likely to have an experience that is negative and scary. That type of experience will reinforce what they already believe about blindness. People already have fears and misconceptions about blindness, and if you give them an experience with blindness that is what they expected it to be, their attitudes are going to be reinforced.

Simulations such as those done on #HOWEYESEEIT and some of the simulations that are done in schools can do harm. They reinforce people’s existing biases and stereotypes. A blindfold simulation is a bit like taking people’s attitudes and melting them down under a heat lamp.

The research also suggests that if you give people a positive experience of blindness, maybe it will reduce prejudice and discrimination. That’s a hypothesis that is yet to be tested. The cane walk that you can do tomorrow, where you can choose to put on sleepshades and walk around with a cane, might give you a positive experience. It might give you a more positive view of the abilities of blind people when they use canes.

The last thing I’ll say about simulations is that I think they might be a good way to teach about environmental barriers. In order for that to work, though, the simulation must be set up in such a way that the person experiences both accessibility and inaccessibility side by side. Otherwise it’s hard to draw the conclusion that challenges are related to accessibility.

I’ve heard parents talk about having the classmates of a blind child be blindfolded to get an experience with blindness. If you decide to do this, if you simply have the children put on blindfolds and hang on for a while, it’s likely to scare them. The traditional blindness simulation is likely to reinforce a lot of negative attitudes. But if you have the child put on a blindfold and experience a game that is not accessible and then experience an alternative game such as goalball, that experience can teach a lot of good stuff about the importance of accessibility.

If you want to get in touch with me, my email address is arielle@disabilitywisdom.com.

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.