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 email@example.com.