Can I Have My Shoes Back, Please? Avoiding the “Even-I” Empathy Trap

I took a semester-abroad trip to Melbourne, Australia 12 years ago. Early in the trip, I went on a biking tour of the city. They set me up to ride a tandem bike captained by the young, attractive Aussie man leading our group (great inclusion there!) Around mid-morning we stopped for a bathroom break. When I returned to my bike, the captain commented, “I don’t know how you do it! If I were in your situation, I would probably pee on the floor!”

After the initial shock of his remark faded, I found it amusing. He and I, being different sexes,, have completely different methods of handling urination (and my way doesn’t involve aiming anything). But he must have thought that my experience would be just like his, except without sight.

So, it was just a silly comment. No harm done, right? But a similar pattern of judgment can lead to unintentional exclusion of disabled people. Consider comments such as:

-It’s not safe for you to be working here. There’re so many obstacles, even I bump into stuff a lot, and I can see!

-This place would be too overwhelming for someone with autism. It’s overwhelming even for me.

-Even I have trouble keeping up with my kids sometimes, and I don’t have a disability. I’m not comfortable letting you watch them.

-Of course someone with chronic migraines can get a job. When I have headaches, I can just work through it.

-If I were [insert disability/illness label] I’d want to kill myself.

The common thread in all of these statements is that a perceiver compares their own imagined experience of disability to the real experience of a disabled person. Humans often spontaneously imagine what it might be like to live another’s experience by mentally “walking in the shoes” of another. We do this without even trying, but such attempts at empathy are also encouraged by our culture. Because disability is a foreign experience to many nondisabled people, it is common for a nondisabled person to spontaneously start thinking about what life with disability would be like for them. But, this tendency can lead to trouble. Not only is there rampant misinformation about how people live with disabilities, but in making these judgments, perceivers tend to neglect other attributes that may differ between themselves and the disabled individual. In my opening example, the bike captain neglected how sex differences would make his hypothetical experience as a blind man different from my actual experience as a blind woman. In other instances, a nondisabled person who has low athletic ability may wrongly assume that a disabled person would automatically have even lower athletic ability. But, due to natural human variation in innate strengths as well as preference and practice, some disabled individuals are more athletically inclined and capable than their nondisabled counterparts.

Because nondisabled people often fear becoming disabled themselves, “walking in the shoes” of a disabled person often leads to an over-exaggerated perception of the challenges of disability, even to the point of some nondisabled people believing that they would rather be dead than disabled. This tendency can impact how disabled people are evaluated as potential employees, parents, romantic partners, and participants in community life. However, sometimes the bias can swing the other way, as in the example of chronic migraines. Someone may dismiss the experience of a person with a chronic illness based on their own brief, relatively inconsequential episode of acute illness. Or, people may hyperfocus on the wrong issues at the expense of more important concerns. For example, many sighted people worry unnecessarily about my safety if I am navigating a room with obstacles on the floor, likely due to their own experiences navigating in the dark, when in fact I have never once harmed myself tripping over a power cord or a throw rug. Yet they may under-appreciate how overhead objects or loud street noise (including their chatter when I’m at a street corner) can impact my ability to travel safely.

Furthermore, disability is not always linear. A disabled person may be more skilled than a nondisabled person in some areas, but have marked impairments in others. For someone with a sensory processing difference, certain sounds that seem loud to a neurotypical person may be tolerable or even enjoyable, whereas other sounds, seemingly less problematic from a neurotypical vantage point, may be intolerable. Or, a person’s ability to cope with a given demand may vary from day to day, or from setting to setting. All of these things can get lost when we momentarily try to imagine what it is like to have a particular disability.

How do we break out of the problematic pattern of “even I” or “if I were you…?” It’s counterintuitive, but we may understand disability better when we step out of a disabled person’s “shoes.” Social psychologists have distinguished between “imagine-self” and “imagine-other” modes of perspective-taking. When we try to understand another person’s point of view, we can imagine it through our own eyes, by walking in their shoes (“imagine-self perspective-taking”). Or, we can simply imagine how the other is feeling from a third-person perspective, without involving ourselves at all (“imagine-other perspective-taking”). In fact, during early experiments testing the effects of imagine-other perspective-taking, participants were directed to “forget yourself” when watching a video, instructed instead to simply focus on the feelings of the actors.

Disability wisdom involves having the humility to recognize what we don’t know. We can’t accurately predict how a new disability would impact us. It is even harder to predict how another person, with a completely different set of characteristics, is impacted by a disability. Nor is the impact a constant across individuals, time, and place.

Instead of trying to imagine what a disability is like for someone, maybe we can take a step back. We can make an effort to be present with the individual, observe how they function, and most importantly, listen to their communications (verbal and nonverbal) about their strengths and challenges. This might mean, instead of using “even-I” as a basis for deciding accommodations, we listen to the actual needs and preferences expressed by disabled people. It means listening on the individual level as well as to the collective when we decide which policies to support. When we work across ability lines, “forgetting ourselves” may not come easily, but it may be a necessary step to true understanding.

Happy World Braille Day!

Today is the first World Braille Day!

In honor of Louis Braille’s birth on January 4, 1809, the United Nations designated January 4 as World Braille Day starting this year. Celebrate the code that revolutionized literacy for blind people around the world!

Want to learn more about braille? Follow the National Federation of the Blind on Facebook, Instagram, or @NFB_Voice on Twitter all day today.

Want to share your experiences with braille? Post on Facebook, Twitter or Instagram with the hashtag #WorldBrailleDay.

Eradicate Ableism: Our Lives Depend on It

Content warning: detailed discussion of filicide; discussion of Applied Behavior Analysis.
“If the parent is so antagonistic toward their child that they’re contemplating violence, then something needs to change and it’s not the child — it’s the parent.” Samantha Crane, Director of Public Policy, Autistic Self-Advocacy Network

On this blog, we talk a lot about “benevolent” ableism-people being overly helpful or patronizing toward disabled people. But there’s a much darker side to ableism, too. Like other minority groups, disabled people are disproportionately targets of violence and abuse. You may not hear it in the news, but there were 128 disability hate crimes in the U.S. in 2017
But unlike other minority groups, disabled people are targets of one of the most shocking forms of violence: attempted or actual murder by their family members.

The Ruderman Family Foundation reviewed media coverage between 2011 and 2015 and found reports of 219 disabled people in the United States and Canada who were killed by their primary caregivers-mainly children killed by parents, or elderly people killed by spouses. That number, likely an under-report, represents almost one murder per week
It’s a trend that can’t be explained as a few extraordinary cases.

What could possibly drive a parent to harm their own child?

I’m going to present a case study, of an attempted murder that occurred in 2013. And we can examine what happened, and what might have prevented it.

Kelli Stapleton lived in rural Michigan with her husband and three children. Her middle child, Issy, is autistic. According to Kelli, Issy had been aggressive since she was two years old, mainly toward her mother but also at school. When Issy was 13 years old, her mother enrolled her in a private behavioral treatment center for 7 months, and with a strict regimen of positive reinforcement for “good” behavior, the aggression decreased. But, when Issy came home, she started hitting Kelli again. And, Kelli learned that the local public school was unwilling to implement Issy’s strict behavior plan.

Kelli broke down, and devised a plan of escape for herself and her daughter. On the Tuesday morning after Labor Day 2013, she packed up an old van with pillows, blankets, two hibachi grills, and fixings for s’mores. She drove Issy into the woods where they shared s’mores. She gave Issy a double dose of her antipsychotic medication and brought the still-lit grills into the van, and shut the doors. As they slept, the van filled with smoke and carbon monoxide. By the time they were rescued that evening, Issy had developed a traumatic brain injury and was in a coma for four days. Kelli was charged with attempted murder. Ultimately, she pleaded guilty to first-degree child abuse and was sentenced to 10-22 years in prison.

I’m not even going to get into the horrifying amount of support that Kelli got on social media, with posts arguing that this was her only option. Nor will I talk about the disturbing trend of journalists centering disability filicide stories on the killer’s “burden” rather than on the victim. Or the fact that, unlike Kelli, many people who kill their disabled family members get off with much lighter sentences than those who kill their nondisabled family members.

No, I’m a social psychologist interested in predicting and controlling human behavior. So I don’t want to talk about the after, I want to talk about the before. I delved into Kelli’s blog and media appearances to find out what kinds of thoughts, emotions, and behavior precede such a tragedy.

And, the clues were strikingly obvious.

Kelli started a blog exactly one year before her crime, called “the Status Woe.” The blog started innocently enough, with some self-deprecating humor (not involving her daughter) about a bout of diarrhea on a camping trip. But then, the blog quickly turned to the evils of autism. As I read, it became clear that Kelli was all out of love or compassion for her daughter. She had been on a lifelong journey of trying to cure her daughter’s autism, starting with a rigid home program of applied behavior analysis (ABA) during Issy’s toddler years. She’d tried all kinds of diets and supplements, and behavior plans, to no avail.

In one blog post, titled “Autism’s Hard to Love Club,” Kelli wrote that “I have a daughter firmly planted in autism’s Hard to Love club” and then she preceded to describe issy’s overweight and poor personal hygiene to total strangers. In another post, deceptively titled “Inclusion: Doing It Right,” Kelli wrote about how she would draft the “mothers of the class”-peers and older children with helping dispositions- at Issy’s school to be her “helpers” and assigned “friends” in elementary school, and how all the kids wanted to be Issy’s “friend” so they would gain status and approval from adults. (Disability Wisdom readers know that’s not real inclusion!) Embedded in this post about fake inclusion is the comment that when new kids meet Issy, they discover that “Clearly she isn’t “normal.” Kelli also posted videos of Issy’s aggressions on her public blog, and the videos were edited such that the cause of the aggressions was never clear. She blamed Issy’s aggressions on “autism, hormones, and whoknowswhatelse.”

Kelli also gave a radio interview around the same time as she wrote her blog. On the interview, Kelli admitted that her ABA treatment may have contributed to Issy’s aggressions, saying, “I’ve been in her face since before she was two years old” reinforcing Issy’s every act as she tried to shape non-autistic behavior. On the air, Kelli didn’t sound like a murderer. But, her entire focus was on treating Issy. when the psychiatrist on the show asked Kelli if she had gotten counseling for herself or the rest of the family who was impacted by Issy’s aggressions, Kelli kept saying she just needed to focus on Issy and getting Issy’s behaviors under control before taking therapy herself. The psychiatrist warned that aggression was a family issue, that the entire family was involved and that “eventually, someone is going to get hurt.”

I cannot pretend to imagine how hard it must be to live with a family member who is aggressive on a regular basis. Undoubtedly, stress and burnout contributed to Kelli’s tragic choice. But, aggression is not an inevitable consequence of autism. Antisocial behavior never occurs in a vacuum. It not only impacts the entire family, but it is caused and reinforced by interplay between one’s internal neurology and the external environment. And perhaps one of the least-appreciated factors contributing to a disabled person’s alleged behavioral difficulties is ableism in the family unit.

I wonder what it would have been like for me, if my parents had kept me on such a tight ABA leash, getting in my face and correcting my every action since before I was two years old. If I knew that my parents not-so-secretly wished I wasn’t born the way I was and did everything they could to try to change me. If my parents filmed me in my most vulnerable moments and put those videos out along with weight-shaming comments on the Internet. If I had sensory needs my parents and teachers ignored. If I had no outlet for expressing my turbulent emotions during puberty, and if my attempts at communication were dismissed.

That’s right: I’d probably start hitting, too. And I’d probably keep aggressing if I learned that aggression was the only way for me to control my own life.

Issy Stapleton nearly died because of her mother’s ableism, plain and simple. In an interview with New York Magazine after her sentencing, Kelli recounted the day of the crime, saying of her fantasies of the afterlife on that day, “We will be done with autism completely … “For the first time
in my life I am going to be able to have a real conversation with her,
and see her. Get to know her, without the perseverations and the
aggression. In her real voice, not this robot voice.”

Kelli could not bring herself to accept the child she had. She tried in vain to change Issy, and Issy responded with aggression. The violence escalated until Kelli came to the conclusion that a murder-suicide was the only way for her to get the child she really wanted.

Preventing disability filicides goes far beyond just giving parents more respite services or better insurance coverage for therapies. (Indeed, Kelli was on her state’s waiver, where she had nnearly 24-hour help with Issy at home. Other parents with less support don’t hurt their children). Prevention needs to start much earlier. Anyone who plans to become a parent must get good, balanced information about disabilities and come to understand the normality of disability. Because, the statistics show that one in every 88 parents will bear an autistic child. Up to one in five parents will bear a child who, at some point in life, becomes disabled. Disability must be presented in our schools, our workplaces, our neighborhoods as a natural part of the human condition. People planning to become parents must have opportunities to examine their biases about disabilities and eventually come to accept the possibility of having children whose abilities might differ from their own.

From a policy perspective, this might mean having disability studies as a mandatory course in high schools. It might mean that whenever a child is diagnosed with any disability (whether in utero, at birth or later in childhood), the family is automatically connected with at least one self-advocate bearing the same disability. And, it means that when a child or teen presents with behavioral difficulties, assessment and treatment must focus on the entire family unit, not just the one family member manifesting symptoms.

We need to work together to eradicate ableism. It is literally a matter of life and death.
For Further Reading:
Kelli Stapleton Can’t Forgive Herself. Can You?
Untwisting Perceptions: Autism, Parenting, and Victimhood
The Cost of Noncompliance is Unreasonable
Kelli Stapleton. Still Relevant.

Dear Nondisabled People, Episode 1: Arielle Silverman and Zoe Joyner

Photo of Zoe Joyner
Photo of Zoe Joyner

Last summer I worked with one of our Project RISE students, Zoe Joyner, to create a podcast series for the Weekly Wisdom blog. Zoe has a passion for storytelling, and over the course of a summer internship, she created the “Dear Nondisabled People” series with five episodes featuring different disabled self-advocates. Zoe developed the interview questions, led the majority of recording, and performed basic editing on the finished interviews. In the process she also learned about the past, present, and future of a community to which she belongs. After her summer internship with Disability Wisdom, Zoe has begun her freshman year at Spelman College, where she is majoring in history and communications.

This week I am presenting our first episode in which Zoe and I interviewed one another. It is a kind of “practice” episode (and my voice is a bit worse for wear because we had to re-record it after a technical glitch). But, this episode captures the lived experience of a young self-advocate alongside my own assessment of where we stand in the disability community, particularly in the United States, and where we are headed. Click the link to listen, or if you prefer, read the transcript below.
Listen to Episode 1

Zoe Joyner: Welcome to the first podcast of Dear Nondisabled People. My name is Zoe Joyner. I have a vision impairment called CVI or Cortical Visual Impairment. It’s when the brain has trouble processing what it sees. I describe it as looking through Swiss cheese.
Arielle Silverman: My name is Arielle Silverman, Principal of Disability Wisdom Consulting and the primary writer on the Weekly Wisdom blog. Thank you for tuning in today and this first episode, Zoe and I are going to co-host and ask each other some questions. As far as my disability background, I am nearly totally blind. I can see some light and shadows due to a condition I was born with that is called Leber’s Congenital Amaurosis. So today we are both going to be sharing a little bit about our own experiences about disability as well as some knowledge that we have from the disability community. I’m going to start by asking Zoe a couple of questions. First of all, Zoe, could you tell us about some challenges you’ve faced in your life and how you have overcome those challenges so far.
Zoe: My challenges have been speaking up with teachers. There was also challenges when I was little of figuring out if I had any other disabilities like ADHD because it was hard for me to focus because of my vision. I am attracted to motion, so it was a lot of hit or miss things. Also, I have learned to think that I am a trailblazer because a lot of kids with my vision impairment aren’t as academically focused. Since it is a brain injury, they have a lot of other challenges. I have learned to speak up more, especially through email because I can be very self-conscious so it’s easier for me to email a teacher than talk to them face-to-face. And also, I learned that writing a letter to my teachers during the beginning of the year can stop simple things like forgetting to enlarge things and hitting that in the beginning, so I don’t have to remind them so much throughout the year. I have some things to fall back on if they’re not doing it.
Arielle: In a related question, how has your childhood experience impacted your career choices so far in your life?
Zoe: I really liked history growing up. I used to like Math, but it got a little bit more visual like with Geometry. I’ve always liked stories, so that’s why I am interested in podcasting, and not only like reading stories, but I also like hearing about others and sharing the with the rest of the world who can benefit.
Arielle: Great, well thank you very much. You have some questions for me??
Zoe: what is the mission of your organization
Arielle: So, I am simply a solopreneur working for myself. It started in 2016 and the name Disability Wisdom has a double meaning. First of all, I believe very strongly that all of the knowledge and wisdom about living with a disability should come from those of us who actually have disabilities. The main objective of Disability Wisdom Consulting is to bring out the lived experiences of people with disabilities to educate others, both formally through research projects and interviews as well as informally through these podcasts, blog posts, and training materials that are developed collaboratively by people with disabilities. The other meaning of the term disability wisdom comes from Erving Goffman, a Sociologist who wrote about stigma. He used the term wise to refer to what we would today call allies, people who don’t themselves have a characteristic, but who empathize and understand the experiences of people who do have that characteristic and people who treat those of us who have a stigmatized characteristic in the same way as people who don’t have that characteristic. My goal with Disability Wisdom is to help people become allies by harnessing their natural curiosity and willingness to work collaboratively with us and support us as allies.
Zoe: has recent legislation affected your organization or people with disabilities in general?
Arielle: there is some legislation recently that has been proposed that could be problematic for people with disabilities. One example is the ADA Reform and Education Act that was passed in the House of Representatives which would weaken the enforcement of the Americans with Disabilities Act. The whole point of the Americans with Disabilities Act or ADA is to ensure that places of business that accommodate the public are accessible to people with disabilities. In order to be effective, the ADA needs to be enforceable and people need to have a mechanism for complaining if they identify violations. The newly considered legislation would weaken the ADA by making it harder and more complicated for people to enforce it and make complaints. That has been concerning a lot of people. The other major issue that has been coming up a lot recently is proposed legislation that would weaken Medicaid services. A lot of people with disabilities have incomes below the poverty line because they are unemployed or underemployed or have preexisting health conditions that employer coverage health insurance may not cover, so they literally need Medicaid to survive. Also, a lot of people with developmental and intellectual disabilities rely on what is called Home and Community Based Services, different kinds of personal assistance, people who can help them remain in their homes and communities. Those services are funded by Medicaid, so threats to Medicaid could threaten the livelihoods of a lot of these individuals. I will say that I think the main way right now that this proposed legislation has impacted the disability community is by bringing us together across impairment lines, in a lot of cases to fight and oppose the new legislation.
Zoe: How do you think the life of people with disabilities has changed over the past fifty years?
Arielle: there have definitely been a lot of gains, some steps forward and some steps back. For example, legislation was passed in the 1970s that requires schools to accommodate students with disabilities. It used to be the case that a child in the United States couldn’t necessarily get into a public school unless they happened to have parents who fought for them and had the resources to get them in. Now, it’s enshrined in the law that children with disabilities are entitled to a free appropriate public education in the least restrictive environment. Basically, that means in most cases, kids can go to their neighborhood public schools with their siblings and they can get the accommodations they need. So that has been a huge change. But there have also been some steps back. For example, blind kids used to be educated in segregated schools, for example boarding schools for the blind and that had its own problems but one of the good things about it is they often received early instruction in Braille and other critical blindness skills. Now, these kids are being educated in their neighborhood schools but because of funding deficiencies and short staff, a lot of districts just don’t have a lot of teachers who are qualified, so these kids aren’t necessarily getting Braille and other critical blindness skills. So that’s one way that legislation has moved us far forward but there have also been steps back. I also mentioned the Americans with Disabilities Act which has also created a lot of opportunities in employment and access to the communities that we live in. It also has created its own challenges. People are afraid of lawsuits and so they end up kind of hiding their disability prejudice in other ways. In the 1970s, an employer might come out and say, “we don’t want you working here; it’s too much of a liability.” But in 2018, people are afraid to say that but they still think it, so instead they kind of disguise their discrimination in other ways saying we have already filled the position. They come up with excuses and that makes it more difficult for people to advocate for themselves. One final change that has been huge in the disability landscape has been technology that has allowed on one hand access to a much wider array of information and devices but on the other hand, if the technology is created in such a way that it is not accessible, sometimes that ends up closing doors as well. So, one example of that might be appliances like microwaves, washers and dryers that used to have dials. For a blind user, the dial might not be accessible, but you could put stickers on the dial to make it accessible. Now that we have these new-fangled touchscreen devices, it is much more difficult to access those devices and make the right modifications. It is a lot of two steps forward one step back, and there is definitely potential for the lives of people with disabilities to get better, but we have to work together as a community and be vigilant.
Zoe: do you think our country is going in a positive or negative direction?
Arielle: I would say overall that we are going in a positive direction. I want to be optimistic. I think the clients I have worked with in the last two years have genuinely been interested in including people with disabilities and understanding that we have things to contribute, that we’re not just recipients of aid. I think there is a lot of genuine interest and understanding that disability is not just an obscure thing, that it actually does affect up to one in five people and that including people with disabilities should be a priority. So, I think that overall, we are going in a positive direction, but there are competing interests that are creating threats to some of our basic programs like Medicaid, some of our healthcare programs, and the ADA. We need to be vigilant to those threats and how to acknowledge some of the competing interests, acknowledge that they have validity, and then try to negotiate compromises with lawmakers to ensure that our rights are still being protected.
Zoe: do you have any final thoughts?
Arielle: The only last thing I would say is that I am very appreciative to those of you listening to this podcast series and reading the Weekly Wisdom Blog, both those of you with and without disabilities. For those of you without disabilities, I think that an important first step to becoming allies is to listen to what we have to say and to read what we have to say. I would encourage you if you are working in the disability field in any way or working with an organization that serves people with disabilities in any way, that you pay attention to what we have to say, read our blogs, read our literature, listen to our podcasts and videos and contact representatives from disability organizations to learn more. I would also say the same thing for disabled people to learn about other impairments that you might not be familiar with. The best way to learn is to talk to us, listen to us, and interact with us. Zoe, is there anything that you want to add?
Zoe: I think this podcast is not just important for allies, but also within the disability community. I didn’t have many mentors growing up and I didn’t meet another person with a vision impairment until my junior year of high school when I did the LIFE Program through the Department of the Blind and Visually Impaired. They taught me that I could be independent.
Arielle: Mentoring and friendship within the disability community is very important and something that we can’t take for granted because a lot of us do grow up in families, schools or communities where we are the only one or think that we may be the only one who has a particular disability or has any disability identity. Any way that we can bring people together is really valuable. Thank you very much for tuning in. We will see you on the next episode of Dear Nondisabled People.
Zoe: See you next time.

The “With Autism” Series [Repost]

My friend joked that they needed a bumper sticker that said “Autism is my co-pilot” since they were clearly driving with autism (as opposed to driving while Autistic.)

This weekend, I’m at the National Federation of the Blind of Virginia convention with 22 blind students! While I’m off doing that, I’ll leave you with this humorous piece about the limitations of person-first language. Be sure to get your gear if you’re a “person with autism” or know someone who is!
The “With Autism” Series