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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.

Dear Nondisabled People, Episode 2: Words of Wisdom from the National Rehabilitation Information Center

Photo of Jess Chaiken on a river cruise in Prague
Jessica Chaiken

Photo of Mark Odum on the roof of the Department of Labor building
Mark Odum

On this episode of our podcast series, Jess Chaiken and Mark Odum from the National Rehabilitation Information Center share their observations of the past, present and future of the disability rights movement.
Click here to listen to this episode
or read the transcript below.

Zoe Joyner: Hello and welcome to our second episode of Dear Nondisabled People. I am Zoe Joyner and today I will be cohosting this episode with Arielle Silverman.
Arielle Silverman: Welcome. Today we have two guests with us, Jessica Chaiken and Mark Odum from the National Rehabilitation Information Center. I will go ahead and let you guys introduce yourselves. Jess?
Jessica Chaiken: My name is Jessica Chaiken. I am the media and public education manager at the National Rehabilitation Information Center. Mark?
Mark Odum: I am Mark Odum, the project director of NARIC. It might be noted that Jess and I have been together on this project for what, some 18 years, so we will probably be thinking the same thing as we answer some of these. In addition, I also have a spinal cord injury which I sustained 44 years ago next month. I’ve been very active in the spinal cord injury group and an advocate for all people with disabilities. That’s me.
Arielle: Thank you both. We have prepared some questions that we would like both of you to answer for us. Zoe do you want to begin with the first one?
Zoe: Sure. What challenges have you had in your personal and work life?
Jess: Mark, I’ll let you take that one.
Mark: Okay. As I said I have a spinal cord injury. Since I was injured in 1977, you roll the clock back. That was before the Rehabilitation Act and almost all legislation as we come to know it now like the ADA. Having a disability then was quite different than having one now. I am a full-time wheelchair user and even simple things like curb cuts in cities to get up and down curbs were unheard of in those early days. My challenges were physical in nature as far as the physical barriers. In addition, in the early days you still had a lot of folks that didn’t know how to approach a person with a disability and weren’t really sure. If you didn’t have a personal association with someone with a disability, you probably had no idea what it was about, so you face those –I don’t know–I don’t want to say that they were prejudices, but certainly people having certain associations and feelings and working around them.

As far as work life, I have always felt it has been a pretty level playing field. One thing in work is that you are judged by what you produce. Pretty much work is, as it should be, a results-oriented type of atmosphere. If you are producing well and working well and have good results, then I think you do well just the same as most anyone else. Jess, you might want to expound on that a little.
Jess: I think as far as our team is concerned, everybody is coming to the table at the same level. We are all bringing our individual experiences. I am not a person with a disability, but I have educational experience in disabilities. I have a masters in ASL linguistics. I think we all came to this job not necessarily because we were people with disabilities but because we were focused on providing the right information resources to people who need them in the best way possible. The biggest challenge for me has been tracking new technology, how it is being used by the community—by people with disabilities and rehabilitation professionals and making sure we are using it to the best advantage.
Mark: I agree. I think everybody on our team certainly comes in with a special sense of helping out and helping people. You hear about paying it forward and it isn’t necessarily something like that, but we all have an extra sense of doing something helpful. On the information end, I talk to our information specialists frequently about when they do find a piece of information or they help someone out, that really makes a difference in someone’s daily life. I like to say it’s as good as a paycheck. It might not pay the rent but the personal satisfaction you get in helping someone out and providing that kind of information is really shared by each of us heart to heart.
Arielle: Great, thank you. The next question for both of you, and Jess you can start, is how has your childhood impacted your career choices and anything that has impacted your decision to work in the disability field.
Jess: In terms of my childhood, I really loved the hunt for information. I like doing the research. I used to joke with a friend of mine that I really liked looking stuff up. She said, “You should probably be a librarian.” As it happened, that’s the career that I ended up in. In terms of working in disability, I really came to it through ASL because I have a love of language and I discovered American Sign Language late in my college career and decided to pursue that. Besides that, I think I was probably like most Americans, you kind of have a peripheral experience with disabilities until you find yourself in a position where you are unable to function like you did before. Since then, of course I have a much more profound understanding. I’m sure that will change over time as well.
Mark: I think for myself in childhood, I always leaned towards writing and being a writer. I also happen to have quite a love for sports so early on I kind of felt like I must be a sports writer somewhere along the line. I have a degree in journalism. I had two years of college finished before I was injured in a diving accident. At that point, and again back on the subject of not a lot of accessibility, I realized I wasn’t going to get back into the locker room very easily to interview sports figures. I realized that I still had this love of writing, but being a sports writer wasn’t going to happen. Along with the writer goes hand in hand with research as Jess said, looking things up, whether it’s background information or whatnot. I have always enjoyed looking things up and wanting to be close to the research to know the latest going on. There is something to be said for that hunt. It’s neat to have a challenge. You might know something is out there on the Internet and it’s just a matter of trying to find it and hunt for those different gems, whether it is for background information for an article or getting back to some of the primary work of NARIC to help someone out with a problem they are having. I think that is the childhood tie-in I have.
Jess: Definitely the wish to connect the right thing to the right person, whether it’s as librarians doing research or as a writer bringing experiences to the reader, that’s where we’re both coming from.
Arielle: Next question?
Zoe: What is the mission of your organization?
Jess: NARIC is a library and information center and we focus on disability and rehabilitation research. Our core mission is to collect and disseminate the results of projects funded by the National Institute of Disability Independent Living and Rehabilitation Research and get that research out into the community. We maintain a fairly large collection of research literature and then we also have these information and referral services that, more often than not, connect people to organizations rather than researchers, but we do spend a fair amount of time and energy developing resources to highlight what the NIDILRR community has created, the work that they are doing, and getting people engaged in their research. Do you want to add anything to that Mark?
Mark: No, I think that’s pretty close. I think at a secondary level, we kind of reached out and made sure that we are looking at the information and trying to expand its use and usability. We have a couple of existing projects now where we are putting research into lay persons language to broaden its appeal. We are trying to disseminate information as widely as we can.
Arielle: how has legislation impacted the disability community or impacted NARIC in your opinion?
Jess: The most recent legislation that impacted NARIC was the Workforce Investment and Opportunity Act which moved our funding agency NIDILRR from the Department of Education to the Administration for Community Living and the biggest impact that had for us is it really made us focus on community participation. What does it mean to ensure that a person can interact in their environment and engage in the community of their choosing and what can we do to make that possible? I will let Mark speak to other legislation.
Mark: I think generally, legislation has helped people with disabilities, their family members, and advocates for folks with disabilities, realize that they belong, that they are entitled and have civil rights to everything that one might have if they didn’t have a disability. It makes a big difference I think when you approach with the feeling that “I belong” instead of the feeling that “I need a handout.” Generally, I think folks now know that they belong, and they are looking for information because they have a right to that information. You might be so crass as to say I pay taxes and I know my taxes go toward this, so I want it. It’s no different than using the anecdote that there’s a big uproar about televisions and having closed captioning put in every television. Some in the community said why do I need to pay for this technology I can hear, and I don’t need this. Very quickly, the deaf community came back with “All my life, I’ve been paying for the sound you listen to.” You belong, and you have a right for every piece that everyone else has a right to. It is refreshing, and I think it has been embraced recently. That is what I would say in addition to Jess’s part.
Zoe: How do you think the life of people with disabilities has changed over the past 50 years?
Jess: I can only speak observationally, so I will let Mark answer that one.
Mark: I’m over 50 and approaching 50 years as a person with a disability. But certainly, again with the legislation, that the ADA has brought forth both physical barriers and just generally acceptance. There’s no child with a disability that doesn’t know the ADA. There’s no child that doesn’t know that many years ago, they weren’t allowed in public schools. They were able to get that public education through legislation. That is an equalizer quite honestly. The more folks with disabilities get outside and are participating and have been allowed to participate and the doors have been open to participate, the more they associate with folks that might never have come across someone with a disability. That is an awareness that helps folks that wouldn’t otherwise have associated with someone with a disability realize “You know what? Any preconceived notion I had isn’t right. They are just like me in every way. They eat breath bleed.” We are all human beings, so I think in many ways that is what has changed. You see a lot more folks with disabilities in television and in the movies. Disability is becoming commonplace. Have we gotten as far as I would like to see yet? No, but we are working on it. I expect it will.
Jess: One thing I have seen with the research, certainly the research that has come out of our funding agency, is the shift from talking about disability in terms of not inability and in terms of clinical presentation and what’s called the medical model, and instead talking about how the person interacts with their environment and how the environment impacts their ability to interact, so the environmental model. Part of that has to do with visibility. People with disabilities are now out in the community, in school, at hotels, in businesses so we now have to talk about how do the barriers in place, what effect do they have and how can we remove them? How is an organization improved by simply bringing people of diverse abilities in. And the fact that we are using terms like inclusion and diversity instead of symptom and function, I think that has made a huge difference in the lives of people with disabilities. I hope so, at least observationally.
Arielle: Last main question for both of you is do you think that things are going in a positive or a negative direction today for people with disabilities.
Jess: I would say both.
[crosstalk]
Jess: Yes, I think the changes in our current climate, both the actual climate and political climate, are influencing my answer there. There has been so much progress and I think we are headed in the right direction in so many ways. I think we have some outmoded ideas and attitudes that need to be finally put away because they keep creeping up and pulling some things back, things like the idea of sheltered workshops, minimal pay, nursing homes, health insurance and healthcare especially. Those I see pulling back on some of those improvements myself. How about you, Mark:
Mark: I would answer this quite differently two years ago than I might today. And first, do realize that you are hearing from one of the all-time open-minded optimists, so I am always going to feel like it’s going positive one way or another. And I think, you know, the genie is out of the bottle. You might have some people who are trying to stuff it back in or don’t see things but that’s not going to change the tide. It might slow the tide down a little bit but it’s still going to continue forward. For one thing, folks with disabilities and people who are associating with them, again, it’s a growing minority. This country, in another thirty or forty years, I would like to believe, is going to be a group of all minorities. There is not going to be a majority. Part of that is folks with disabilities are going to be one of the many minorities that are running, helping this political climate move forward and helping everybody move forward. Still positive!
Zoe: Do either of you have any final thoughts or would like to share any other skills you need for your job?
Jess: I think the biggest skill that I need for my job is just the ability to listen and understand. Sometimes, people call us and all they are looking for is someone to hear the issues that they are having, but really it’s about listening to understand what their needs are and responding with the right pieces of information and the right contact. Whether you want to call that active listening, listening for content, or listening to the goal, I think that is a powerful skill for any librarian to have, especially the ones at the reference desk or answering the phone.
Mark: Well first, I want to thank you for this opportunity to talk about NARIC and some of the pieces here and it leads me into something that, actually Jess, neither of us quite mentioned but the role that technology has played in this and the opportunity you have with the podcast. My goodness, just a few years ago, no one had any idea what a podcast was, let alone the ability to quickly reach a lot of folks out there so the technology is also on the side of people with disabilities because it is making things that much easier when designed the right way. Sometimes, you have to go back and retrofit some things, but generally, I think technology and folks with disabilities are embracing it and taking ahold of it very quickly to their advantage. They are going to make it work for them. They realize what an opportunity it is. It’s neat to see.
Jess: Yeah, I agree with that.
Arielle: Well thank you to both of you for your time and your invaluable perspectives.
Jess: Thank you.
Mark: Thank you for having us.
Jess: Much appreciated.
Mark: Look forward to hearing it and telling all my friends.

What’s My Age Again: Why Mental Age Theory Hurts People with Intellectual and Developmental Disabilities

“Difficulty doing specific tasks isn’t the same thing as being an actual child. … I not mentally 12. I am mentally 28. I just have an intellectual disability.” -Ivanova Smith, adult with an intellectual disability
“You can support people without condescending to them. … Yes, I’m an adult. That doesn’t mean that I don’t have support needs. Rather, it means I should be able to share what my support needs are and direct the means by which I receive support.” Finn Gardiner, adult with a developmental disability

At least one form of discrimination in our society is alive and well. We discriminate against young people, every day, in policy and in practice. For example, in the United States, we don’t let people drive a car until they’re 16, vote until they’re 18, or buy alcohol until they’re 21. We deny freedoms to our citizens based on age alone, and it’s not even very controversial.

I’m not going to challenge age minimums in this post. I’m just using this as an example to shed light on a more problematic form of discrimination related to perceived age. This is the infantilization of adults with intellectual and developmental disabilities (IDD), based on a concept called “mental age.” Like chronological age, people use “mental age” as a shortcut to judge the maturity and competency of others, but the consequences of judging people by their “mental age” can be far more serious.

The concept of “mental age” was first introduced by Alfred Binet, co-creator of the first IQ tests, in the early twentieth century. Generally, “mental age” has been measured by comparing an individual’s score on a standardized IQ test with the average performance of their same-age peers. For people with IDD, “mental age” may also be estimated by comparing the person’s demonstrated physical, speech, adaptive or cognitive skills against the average for various age groups.

Not surprisingly, “mental age” came about alongside the eugenics movement in the United States. Mental ages were used to classify various groups of “feebleminded” individuals by severity: Adults with a mental age of 9-12 years were classified as “morons”; those with a mental age of 6-8 years were classified as “imbeciles”; and those with a mental age of 2-5 were classified as “idiots.” Individuals from any of these groups were thought unfit to reproduce.

Besides the disturbing history of mental age theory, using mental ages to classify individuals is problematic because:

First, mental age oversimplifies: Boiling an individual’s intellectual, developmental and adaptive functioning down to a single number obscures that person’s complexity. Some individuals may be highly skilled or knowledgeable in some areas, but experience impairments or naivete in others. Tests that measure only one or a few kinds of intelligence can miss other kinds of intelligence or compensatory skills that the individual uses. Intelligence test scores can also be biased by social and cultural factors unrelated to actual intelligence or skills.

Second, mental age is treated as a ceiling: Chronological age is, by definition, a dynamic concept. People are constantly aging, and this is part of the reason why age minimums are considered relatively acceptable in society: They are temporary. Eventually, everyone will get old enough to drive, vote, or buy a drink. In contrast, though, mental age is often described as a limit that someone reaches and cannot exceed. An adult with IDD may be labeled as having a mental age of 3, 7, or 10 years old, and once that mental age is reached, they are expected to think and act that way for the rest of their life. For example, in the 2001 film I Am Sam, the protagonist-a single father-is labeled with a mental age of 7. It is strongly implied that he will no longer be a fit dad after his child turns 8 because his daughter will continue developing while his development is locked. Although adults with IDD may reach plateaus in certain skills, everyone has the potential to adapt or improve their life circumstances. There have been powerful stories of adolescents or adults with severe communication impairments, for example, who showed great leaps in communication skills when presented with the right technology, the right support person, or both. Oftentimes it was discovered that these individuals had knowledge or skills that they had been unable to express to others in the past. Mental age labels artificially restrict that growth process. (Ironically, Alfred Binet himself believed that intelligence could change over a person’s life, but the IQ tests he helped design have been taken out of that context).

Most important, mental age is used to control freedoms and support: Outside the disability space, we understand that younger children usually need more support than older children and adults. We also reserve some freedoms (like driving, voting or buying alcohol) exclusively for older teens and adults. In the disabled world, too, presumed mental ages are used to deny freedoms. Even if a teen or adult with IDD is not explicitly labeled with a mental age, the prevailing belief that people with IDD are childlike leads too many parents and educators to infantilize them. For example, Finn Gardiner writes:

Infantilisation is very familiar issue to me. I myself have a developmental disability and my parents—my father in particular—infantilised me as a teenager and as a young adult. I wasn’t allowed to do what many of my peers were allowed to do; my parents claimed that I ‘wasn’t ready’ for many of the things everyone else my age seemed to be allowed to do, like going to school dances. My parents restricted what I read, thinking that I wasn’t mature enough to handle heavier themes in books, TV and films despite encountering similar subject matter in my assigned readings at school. They would force me to attend church even when I’d told them clearly that I was no longer religious; they justified this by claiming ‘in our house, we serve the Lord’, even though I was only going through the motions of practising Christianity. … When I was nineteen years old, my parents installed parental controls on my Windows account. … I was old enough to vote. In fact, I had voted when I was eighteen; I distinctly remember being eager to vote against George W Bush in 2004. My parents didn’t always give me the right to try, or if they did, they would do it begrudgingly and blame me if whatever I tried didn’t work out, instead of listening to me and working with me to identify strategies that did work for me. For them, supporting me entailed controlling me.

As Finn points out, these actions are not just insulting and frustrating, but could also be dangerous. A teen or adult with an IDD still has desires concomitant with their chronological age, including a desire for autonomy. An individual who has been infantilized may gravitate toward peers who seem to respect their autonomy. If that same individual has never been educated about sex, drugs, or other issues relevant to their chronological age, they could be an easy target for abuse and exploitation.

And, age can be used as a weapon in reverse, too. An adult with IDD may be denied supports due to their age, or admonished to “act their age” during a public meltdown, for example. But, many nondisabled adults have meltdowns, too. (We might see one on the floor of Congress today). Being an adult does not mean one lacks support needs, just as having support needs does not mean one is essentially a child.

So, how do we combat thinking based on mental age theory?

First and foremost, we need to separate maturity from support needs. Ivanova Smith suggests some ways in which we can concisely describe another person’s support needs without any reference to mental ages. For example:

Ivanova can’t drive due to developmental disability that causes them to have struggles with multitasking and hand eye cordination.
Ivan needs help across busy streets because they don’t understand traffic very well and need support to be safe.
Ivan may need support with emotional regulation because they process emotions differently than other people.

In a related vein, disabled children often receive primary support for disability-related needs from their parents or other family caregivers. Once these children become adults, they may still need human supporters, but having a parent continue to be the disability-related support worker can become a conflict of interest. When parents support their children, they hold authority in the relationship, but when disabled adults get support from people like readers, sign language interpreters or personal care assistants, they benefit from being the one in charge of the interaction. For example, when I was a child, my parents read to me often. They controlled what, when, and where the reading took place, which was entirely appropriate when I was a small child. As an adult, I still need human assistance accessing print, but I need to be the one in charge of what is being read to me. It can be difficult for a parent and adult child to renegotiate a supporting relationship in such a way that the parent is essentially working for their adult child (even if unpaid). It is important for adults with IDD to have self-determination, to the greatest extent possible, in directing who will support them, with what, when and where this support will occur. Depending on the resources available to that individual, and their specific impairments, family members may need to be involved with some of that process. This can work, but only if the family member(s) are willing to consider the disabled adult as someone with their own voice in decisionmaking.

Sources:
Ivanova Smith: Mental Age Theory Hurts People with Intellectual Disabilities
Finn Gardiner: Parents, Do Not Infantilize Your Teenage and Adult Disabled Children

Five Stages of Inclusion

Recently I was talking with a colleague who just came back from a trip to India. She mentioned the contrasting levels of disability inclusion that she saw in different places within the country. It made me think about the differing types of inclusion and exclusion I have encountered in my own experience as a disabled person, a researcher, and an inclusion trainer.

Inclusion is not a binary “on/off” concept. People have differing emotional reactions to disabilities, which fuel distinct behavioral reactions that can sometimes include and exclude at the same time. I have come to observe that inclusive attitudes often evolve in stages, though. As people learn more about the disability experience, they can move from one stage to the next. I also believe that disabled people can move through stages in their own self-acceptance that roughly parallel the stages that a nondisabled person might traverse.

Here is one possible five-stage model of inclusion. Like all stage models, this one may not apply to everyone’s experience. But I do think it can help us understand how many people’s reactions to disability can evolve over time. I am very interested in other people’s feedback on this five-stage model.

Stage 1: Antipathy and Active Exclusion. People in this stage reject disabilities and actively bar disabled people from their communities. Fortunately, most people don’t start out at this stage. But when they do, their behavior is usually motivated by strong emotions such as fear, disgust, contempt, or envy toward disabled people. They may believe that disability is a curse, that it will spread from person to person, or that disabled people drain resources or take up undeserved special treatment. Institutionalization, eugenic policies, and disability hate crimes are firmly planted in this stage. For a disabled person, Stage 1 may be characterized by a strong sense of self-loathing, as the individual may view their disability as a blemish on their own character.

Stage 2: Tolerance or Passive Exclusion. For most people in Stage 2, disability isn’t really on their radar. If they encounter a disabled person, they may tolerate that individual, but may not make a real effort to include them. Communities at Stage 2 don’t actively exclude disabled people, but they also don’t incorporate accessibility or universal design, leaving many people passively excluded. An employer at Stage 2 might consider a disabled job applicant, but ultimately hire a nondisabled competitor who seems less complicated and easier to train. Most people without disability contact start out at this stage. For the disabled person, Stage 2 may mark an attitude of minimization, where the individual might conceal their disability (if they can) and generally distance themselves from disability communities.

Stage 3: Helping and inspiration. People in Stage 3 include disabled people, but mainly out of a sense of pity, obligation, or a desire to help. People in Stage 3 may feel emotions of warmth or affection toward disabled people, but they do not yet see disabled people as true equals. They may be motivated to include disabled people in order to relieve their own distress or sense of obligation, and as a result, they may want to control the interaction and be in charge of deciding *how* to include the disabled person. Family members of disabled people can be at any stage, but they are at particular risk of getting stuck in Stage 3; they may be pulled into this stage by their healthy feelings of love and affection toward their disabled relative, but then have trouble moving to higher stages where their relative is seen as an equal. Employers in Stage 3 may be willing to hire disabled people on an unpaid or temporary basis as a charitable act, but they don’t recognize the benefit of hiring disabled workers for their own bottom line. People in Stage 3 may also be big consumers or producers of inspiration porn, exaggerated depictions of disabled people doing ordinary things. Underlying both helping and inspiration porn is the sense of disabled people as “other,” people “not quite like us” who are either helpless or superhuman. For a disabled person, meanwhile, Stage 3 might involve behaviors of overcoming or overcompensating for disability, still striving to distance oneself from disability and the associated community.

Stage 4: Individual Equality. People who have moved into Stage 4 begin to recognize that disabled people deserve equal treatment. They recognize disabled people as people like them, and understand the importance of respect and dignity in their interactions. Employers at Stage 4 will hire disabled people who are genuinely qualified for the job, and they will be willing to make accommodations on an individual basis. However, people at Stage 4 may not yet recognize the value of cross-disability activism or universal design. They may be willing to make accommodations for individual disabled people in their lives, but may not anticipate the need to make environments accessible for other disabled people who might come in the future. Disabled people at Stage 4, meanwhile, will advocate for their own needs and demand equal access for themselves, but they may not get involved in broader activism.

Stage 5: Inclusion as Social Justice. People at Stage 5 recognize inclusion as a universal imperative. They recognize the integral role that disabled people play in society, and are motivated to design things so that people with all kinds of abilities or impairments can participate. Employers at Stage 5 have inclusion committees and a strong plan for inclusive hiring. The autistic blogger who writes about autism while ensuring that all photos and videos are captioned for blind and deaf visitors is at Stage 5. People at Stage 5 also recognize the intersectionality between disability and other social identities. Disabled people at Stage 5, meanwhile, will engage in collective activism even if the particular issue may not impact them personally, if it impacts other members of the disability community.

In my experience, people can often move from lower stages to the upper two stages through exposure and education. I am interested to investigate some of the factors that might guide that process. For example, some people (like my husband) skip the helping stage entirely, and move fairly quickly from neutral tolerance of disabled people (Stage 2) to respect and equality (Stage 4) and, sometimes, Stage 5. For other people, the helping stage seems to be a necessary part of their inclusion journey. And, in fact, the helping stage isn’t always bad. For a person or a community in Stage 1, where negative feelings toward disabled people dominate, getting them to Stage 3 (the helping stage) may be a real sign of progress.

There is much that we still don’t know about how to teach disability inclusion and acceptance. But, one lesson of this stage model (to the extent that it accurately describes people’s attitudes toward inclusion) is that intervention may need to look different depending on the current stage that an individual or a community occupies. For a community where disabled people are actively shunned (Stage 1), tolerance or helping may be the short-term goal. For a person or a community stuck in the helping stage, in contrast, a good goal may be aiding them to recognize the equal personhood of disabled people. And for a person or community in Stage 4, there is room to grow into Stage 5. A one-size-fits-all inclusion campaign is unlikely to lead to progress across the board. Instead, as advocates, we need to adjust our approach based on the attitudes and concerns of the particular communities in which we work. A customized approach is likely to make the most impact.