But did you learn about people with disabilities, the largest minority group in America, an identity that will surely affect you or a close loved one at some point in your life? Probably not, because it is barely mentioned in most psychology courses.

A Forgotten Minority

Our analysis of the top undergraduate universities in the country shows that fewer than 35 percent offer even one psychology course that focuses on topics outside of psychiatric and cognitive disability, such as physical (the most common in America), sensory, chronic health, or intellectual disability.

Furthermore, most psychology courses take a medical model perspective to disability and include little social model content. The medical model treats disability as a pathology within the individual while the social model points to society as a major cause of disability. Large subfields of psychology focus on the social construction of minority groups, so it is especially surprising that psychology is teaching these outdated assumptions about disability. This lack of representation continues at the graduate level and beyond. Only about 2 percent of psychology faculty at APA-accredited programs documented a disability.

Representation Fights Ableism

We published research comparing disability attitude change across three undergraduate elective psychology classes. One class included education about disability from a social model perspective and had an instructor with a disability. The second class had an instructor with a disability but did not cover disability. The third class, a control group, did not cover disability or have a disabled instructor. As expected, we found that the first class had the most positive change in disability attitudes, followed by the second class, while the third class showed no change.

These findings are a promising indication that disability representation from a social model may reduce ableism, yet more work needs to be done. Future research should include a class with disability content and a nondisabled instructor to disentangle the potentially powerful effect of having a disabled instructor. Furthermore, disability should not be relegated to electives; rather, it should be represented in all psychology coursework, especially Introductory Psychology, which serves a broader student population and more than 1 million undergraduates each year.

A Vicious Cycle

The lack of disability representation in psychology courses contributes to the invisibility of disability. When I first began teaching a general social psychology course, I spent some time discussing disability in the stereotyping and prejudice unit, but not nearly as much time as I spent covering racial and sexual minorities, because there is more research in that area. Still, I got several comments in course evaluations that I focused too much on disability, such as “[Dr. Bogart] spent too much time on disability. Teach about something that college students can relate to.” That’s how I learned that messages like this article are needed. Disability is much broader and more common than people think. I’ve gotten better at helping students understand the scope of disability, but without reinforcement from other classes, media, and the culture at large, it is easy to forget.

Even more important are the implications for students with disabilities, who make up about 21 percent of the undergrad population (National Center for Education Statistics, 2023). Sadly, students with disabilities are 18 percent less likely to complete a bachelors degree compared to students without disabilities (U.S. Census Bureau, 2024). When disabled students don’t see people like them represented in courses or as professors, it is disenfranchising. Representation can make the difference between persisting in college or deciding that they don’t belong.

Empowering Disabled Students

Covering disability in my classes normalizes and destigmatizes talking about it. After almost every term, a student tells me that, because of my class, they felt comfortable disclosing their disability for the first time. Some discover that someone in their friend group shares a similar disability but never spoke out—instant solidarity and social support. Students with learning disabilities are empowered for the first time to request accommodations through university disability services. A legal right—an accommodation like notetaking, captioning, or extra time on a test—transforms a struggling student into an empowered, confident, successful student.

Improving Disability Representation in Higher Education

How can instructors increase disability representation in their classes? The lack of disability representation in psychology is a vicious cycle. Since most psychology instructors received little education on disability, they won’t feel prepared to teach it. And, unfortunately, turning to textbooks won’t help either, because they rarely include disability.

To improve disability representation in the field, I co-founded the Disability Advocacy Resource Network (DARN), where disab

led scholars, teachers, and allies can learn from each other. DARN hosted a virtual conference on teaching about disability in psychology, with recordings freely available. DARN members also co-edited a special issue of Teaching of Psychology on Creating an Anti-Ableist Psychology Curriculum and Teaching Environment.

Ultimately, including disability in psychology will reduce disability disparities in classrooms and communities.

A version of this post also appears on Psychology Today.

.In a new study, we interviewed 25 people with various observable disabilities—conditions like mobility disability, blindness, limb amputation, deafness, and speech disorders. We found that the context and the nature of the disability influenced the need for disclosure and affected motivations behind it. This interplay impacted how much control individuals felt over their disclosure and the level of detail they provided, ultimately relating to their well-being.

The Myth of the “Obvious”

When someone has a visible disability, they are often denied what scholars call “civil inattention”—the polite disregard we give strangers in public. Instead, they are met with stares, intrusive questions, and assumptions. This forces them into a continuous “mental calculus”—as one of our participants called it—deciding how much of their private medical history they owe to a curious barista or a potential employer.

While a disability might be observable, the cause, consequences, and specific needs associated with it are not. People with observable disabilities are perennially asked: “What happened to you?” This question indicates that people are trying to make causal attributions—they want to know what caused the disability to determine if the disabled person is “at fault” or if they themselves are at risk of a similar fate.

Disclosure almost never entails simply naming the condition. People with observable and non-observable disabilities alike are expected to provide more information. Consider an example of someone disclosing an invisible disability (“I have mental illness”)—a condition more traditionally understood to involve disclosure—compared with someone disclosing a visible disability (“I am a wheelchair user”). Regardless of the disability type, people want to know the same things, including medical information (“What’s your diagnosis?”), responsibility (“Have you tried exercise?”), prognosis (“Are you getting better?”), and access needs (“Do you need to take leave?”). The unique part of observable disability disclosure is that others have already noticed it, which may heighten the expectation to have these questions answered.

Consider one participant who used a leg brace and cane due to cancer. People assumed his leg brace was due to a temporary injury and frequently asked “What did you do?” This placed him in a position where he was expected to disclose deeply private and potentially traumatic information, and if he explained it, it “craters the mood.”

Emphasizing the importance of examining this topic, this participant said, “Nobody prepared me, ‘hey, so here’s the thing about self-disclosures.’ But seeing that people are looking at it [in the current study], I’m like, Oh, yeah, that’s absolutely a thing…This is a real issue, and it’s pervasive.”

Context Matters

Access needs were a primary driver for disclosure. In a world not built for everyone, disabled individuals are often forced to reveal their private medical status simply to do their jobs or attend a meeting.

The setting of an interaction significantly changes this dynamic. For example, a person with a mobility disability might not need to disclose anything on a Zoom call because the environment is naturally accessible. But if they are invited to an in-person meeting, they may have to disclose their disability just to ensure there is a ramp or an elevator.

Even disabilities that are often thought of as highly observable can be rendered invisible by the situation. One participant, who was a wheelchair user, provided a striking example of the influence of situation on observability and disclosure. While she was being treated in a hospital for a condition unrelated to her disability, her wheelchair wasn’t in the room. Her doctor’s questions revealed she didn’t know she was a wheelchair user despite having access to her medical information. Our participant had to tell her doctor: “I can’t stand up and walk to the scale like you want me to.” This story illustrates the power of the situation in affecting whether a disability is visible and the potentially serious consequences of assuming that disabilities are always observable.

Dimensions of Disability

Disability observability exists on a spectrum. Some disabilities, like facial differences or wheelchair use, are almost always visible. Others, such as chronic health conditions or ADHD, often aren’t. Factors surrounding the disability—like whether symptoms are flaring—affect whether others can observe it.

Not all observable disabilities are treated equally. People with “prototypical” disabilities—those commonly represented in our society or media, like blindness or wheelchair use—often find that their needs are better understood by the public.

However, those with “non-prototypical” or rare disabilities—such as speech disorders, facial differences, or multiple complex conditions—face a different challenge. These individuals often feel higher pressure to disclose, having to explain their diagnosis and symptoms in great detail to ensure their needs are met.

The Power of Choice: Autonomous vs. Compelled Disclosure

At the core of this experience is Self-Determination Theory, which suggests that people have three basic psychological needs: autonomy (feeling in control), competence (feeling capable), and relatedness (feeling connected to others).

When a disabled person chooses to share their story on their own terms, we call this autonomous disclosure. People disclosed for various reasons: requesting accommodations, building understanding, or connecting with others. Examples included a professor mentioning their limb difference on the first day of class to remind students that everyone faces obstacles, and a writer blogging about their disability to control the narrative. Autonomous disclosure is linked to those basic psychological needs and is associated with higher self-esteem, a sense of competence, and feelings of belonging.

Participants also exercised their autonomy by choosing not to disclose in certain situations, like when it didn’t feel safe, to maintain privacy, or to signal inappropriate behavior from others.

In contrast, compelled disclosure occurs when someone feels they have no choice but to explain themselves. This happens when people ask prying questions, or—most frequently—when a person must explain their disability just to get access to a building or service. Feeling forced to disclose is often linked to distress, shame, and internalized ableism.

Taking Back Control

Participants highlighted the importance of autonomy in disclosure decisions. They recommended developing decision-making aids like pro-con lists and decision trees about disclosure. Having a prepared response to common questions can help people feel more in control of their privacy boundaries.

While individual strategies are helpful, structural change is the ultimate way to support self-determination. Universal design—environments and policies that are proactively accessible to everyone promote autonomy. When a building is truly accessible, a person doesn’t have to “come out” as disabled just to enter the front door.

Furthermore, society needs to respect privacy boundaries. Just because a disability is visible does not mean the person’s medical history is public property. As one participant said, “It’s harder to set those boundaries when it’s so obvious, because when people can observe something, a lot of people feel like then it’s kind of their right to find out more about it. And that’s not really the case. I’m still a person, and I deserve privacy.”

A version of this article appears in Psychology Today.

What is Ableism?

Have you ever seen messages in society that suggest people with disabilities are “less than”? That’s ableism in action—a pervasive system of stereotyping, prejudice, discrimination, and social oppression directed toward disabled individuals.

When these harmful societal messages start to seep into our own beliefs, they become internalized ableism. This can lead to feelings of shame and unworthiness. It’s no surprise, then, that both ableism and internalized ableism are linked to low self-esteem, anxiety, and depression.

What is Disability Pride?

Disability pride is a reaction to a long history of shame and exclusion, a movement to challenge ableism. Like pride movements for other minority groups (e.g., gay pride, Black pride), disability pride is designed to subvert what has been a very stigmatized identity. If feeling pride about one’s disability sounds odd (or even like an oxymoron) to you, consider that gay pride, for example, was a foreign concept to the public before the massive shift in public opinion and civil rights it engendered.

Disability pride involves feeling positive about your identity as a disabled person and feeling solidarity with others in the disability community. It’s about appreciating the unique perspectives, creativity, and strengths that come from living with a disability.

It’s not toxic positivity or an overly optimistic outlook. Life with a disability involves very real challenges. And, yes, every person with a disability will have moments of frustration or times when internalized ableism rears its ugly head.

The key insight is that many of these challenges aren’t inherent to the disability itself but are caused by ableism—societal barriers that can be changed. This realization was a driving force behind the ADA.

How Does Disability Pride Help Mental Health?

My research suggests that disability pride can act as a protective factor for mental health. In one study of people with multiple sclerosis, for example, disability pride was associated with lower depression and anxiety.

Another study compared individuals born with mobility disabilities to those who acquired them later in life. Findings indicated that people born with disabilities often reported better mental well-being, possibly driven by higher levels of disability pride.

While people who are born with their disabilities go through their initial development learning about themselves and the world alongside their disability, people who acquire disabilities must relearn how to navigate the world and often report feeling a loss of identity. Building disability pride takes time, and those with congenital disabilities may have a head start.

Disability pride also seems to fortify self-esteem against the impacts of ableism. One study found that experiencing ableism was associated with greater disability pride, which in turn was associated with greater self-esteem.

Social barriers can galvanize people to challenge them. Indeed, people with disability pride are more likely to engage in advocacy and activism. Efforts like these led to the passage of the ADA.

How to Build Disability Pride

• Self-reflection is key. Reflect on your own experiences with disability, acknowledging the challenges and the unique perspectives and strengths it brings. Examine your own beliefs about disability for signs of internalized ableism and question where those views originated. It’s time to reframe the narrative that disability is shameful.

• Educate yourself. Learn about the history of the disability rights movement, the ADA, and current advocacy efforts. Explore disability culture, including disabled artists, creators, and writers. If you need suggestions, follow the disabled writers in my Substack recommended list.

• Connect with the disability community. People with disabilities are at a higher risk of social isolation, which is a predictor of depression and anxiety. While the majority of people with a disability lack even one friend with a disability, just one disability friendship is associated with increased well-being. And it doesn’t have to be someone with the same disability—cross-disability friendships are also beneficial! Seek out support groups and communities (even virtual ones!) and find role models and mentors. These connections offer invaluable companionship and emotional support.

• Become an advocate. Join a disability organization or advocacy movement. Dismantling barriers and challenging ableism doesn’t just benefit you personally; it creates a better society for everyone.

Ultimately, disability pride doesn’t just benefit the individual; it’s a powerful force for changing society’s views about disability. By celebrating disability as a form of human diversity, we can collectively work toward a society where everyone is valued, understood, and included. Through disability pride, we celebrate the history of the ADA, the ongoing movement for disability rights, and the value of people with disabilities in our society.

Versions of this post also appear on the Anxiety and Depression Association of America website and Psychology Today.

Every time I attend this conference, it feels like a full circle moment.

The first time I attended, my late friend and founder of two major facial difference organizations, James Partridge, gave a keynote launching his new organization, Face Equality International.

Last time, in 2024, I had the honor of a lifetime giving the keynote speech, attempting to fill James’ big footsteps. I spoke about Putting a Face to Appearance Research: Representation of Understudied Visible Differences.

At the most recent conference, the keynote was my friend Phyllida Swift, who stepped up to lead the fledgling Face Equality International after James’ unexpected death.

In honor of another restorative and generative conference, I’m sharing the recording of my keynote, available through the Appearance Matters podcast.

I’ll also signal boost Phyllida’s episode on the Appearance Matters podcast.

Sadly, we’re not aware of a recording of James’ keynote, so I will share a biography written for him by his first nonprofit, Changing Faces.

Listen, read, and learn about face equality!

People with disabilities often experience ableism, and people of color also experience racism. However, these experiences of discrimination and how they affect disabled people of color are rarely discussed together. How disabled people cope with discrimination and how this may differ between racial and ethnic identities is largely unknown.

Our new survey study of 103 people with disabilities examined experiences of racism and ableism among people of color and white people. We found several main results, described below.

Discrimination Attributions

Approximately 82% of participants reported being discriminated against at some point. Out of those who reported discrimination, 62% indicated it occurred due to their disability and 25% due to their race or ethnicity. Being a person of color predicted more race and ethnicity discrimination attributions, meaning people of color were more likely to say they were being discriminated against due to race or ethnicity in comparison to white people. Two percent of white participants attributed discrimination to their race and ethnicity in comparison to 52% of people of color.

Having multiple disabilities predicted increased disability discrimination attributions, such that those with more than one disability were more likely to say they were being discriminated against due to their disability in comparison to those with just one disability.

Read the full article

The article was published on the front page of the New York Times Science section in 2010. People recognized me around town and at conferences. The vet that I had taken our cats to a couple of times even cut out an international version of the New York Times. He was vacationing in Japan and mailed it to me; my picture above Japanese characters. I received emails from readers who had connections to facial paralysis or who otherwise resonated with being different in some way. Someone let me know I made the front page of Reddit and said how nice I looked in the New York Times photos. It was all strangely wholesome—I guess 2010 was a simpler time, or I was just lucky to skirt the internet trolls.

But the most consequential email came from Esmond Harmsworth, founder of a major literary agency. He wanted to help me develop a book—part memoir, part science writing. Since his office was in Boston, local to me at the time, we met for lunch. It was the grandest office building I had been in, a skyscraper, the entryway appointed with brass, marble, and doormen. We dined at a high-end French restaurant a few steps away. I wore my corduroy H&M jacket.

In undergrad, I had double-majored in Psychology and English-creative writing. I always say that I have been interested in communication ever since I was born because I was born with Moebius syndrome, a rare disorder involving facial paralysis. My experience of being frequently misunderstood—and my fascination with the diversity of communication—led me to both fields. When Esmond first approached me, the English major in me wanted to jump at the chance, but the budding scientist part of me knew it wasn’t the right time. I wasn’t ready to write a book—I hadn’t even defended my dissertation yet! My advisor said “not until after tenure.” Esmond and I stayed in contact, checking in every few years. I felt honored that he saw potential in me and continued to devote time to helping me develop as a writer.

When I got tenure and took my first sabbatical, I was only in my mid-30s. I didn’t feel like I had lived enough to write a memoir—and I felt the research on the social psychology of facial paralysis was still so young. At the same time, I felt a strange sense of urgency to seize this remarkable opportunity before it slipped away, thinking at some point, Esmond was bound to retire.

The first step, Esmond said, was to write for popular outlets, and this turned out to be incredibly rewarding. I published pieces in The Conversation and HuffPost. For almost six years, I’ve written for Psychology Today in my blog column, Disability is Diversity, combining science communication with my own experiences. We have a tradition in my lab: anytime a student or I publish an academic paper, we also write an article about it for Psychology Today. This provides accountability to ensure that our research makes it beyond the ivory tower to the public. These short articles are a welcome foil to my longer academic writing, allowing me to weave science into relatable stories.

Esmond and I decided that I would work on the book in earnest during my second sabbatical. It would blend science writing on the social psychology of disability with my lived experience as a disabled psychologist. We discussed a book proposal and timelines. I applied for writing fellowships, outlined the book, and started building chapters.

Six months before my second sabbatical, I sent the email I had been building toward for 15 years. I told Esmond I was ready to start my book proposal. Within an hour of sending my email, a reply from Esmond’s colleague informed me that he had died unexpectedly.

Shocked, I reflected on our decade-and-a-half-long connection. Although I didn’t know him well, he was something of an arm’s-length mentor—patiently meeting with me every few years to talk about ideas. Simply knowing that he was within reach, that he believed in me, encouraged me more than I had known. I hadn’t realized how much his belief in me had impacted my identity and maybe even engendered a bit of self-importance. (Maybe this was a useful counterbalance to the imposter syndrome I experienced as a young, female, disabled academic.)

As I read obituaries and memorials, my respect for him—and my regret for not being able to work with him—grew. A proponent of LGBTQ rights, a philanthropist for the arts, he passed away from a heart attack during a family vacation with his husband and two young children. At the time of his death, he was the president of one of the largest literary agencies in the world. A voracious and broadminded reader, he found many of his writers the same way he found me—by reading an article he found interesting and reaching out. It’s a tragedy that such an extraordinary man was taken from his family and community so soon.

My second sabbatical is about to begin—the one where I was supposed to write the book with Esmond. His agency invited me to query another agent, and I am fortunate to have a few friends who are wiling to make connections for me. Part of me feels it’s still too soon for a book; another part wants to honor Esmond’s belief in me by pushing forward. Was I rushing ahead because I didn’t want to miss my chance to work with Esmond?

I started this Substack as a way to honor the path Esmond originally laid out for me and experiment with ideas. This summer, I’ve registered for a creative nonfiction writing class—my first in more than 20 years, where I’ll play around with different forms—personal essays? memoir? I’ve got nine months to consider my direction. I’m hoping this space—and this community—can help me figure it out.

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As one of the only psychologists who both has a rare disease and researches rare diseases, people from rare disorder communities reach out to me from time to time. Growing up with Moebius syndrome—a rare disorder involving facial paralysis and limited eye movement—sparked my curiosity in psychology. There was almost no mental health research on Moebius syndrome until I came along. Recognizing similar psychosocial challenges across quite different rare disorders, I’ve since broadened my research to examine mental health, stigma, and social support among people with all sorts of rare disorders.

Fanconi anemia was named for what was once its most consequential and deadly symptom—bone marrow failure. Lynn and David Frohnmayer started the Fanconi Anemia Research Fund (now called Fanconi Cancer Foundation; FCF) in 1989 when they learned several of their children had this heritable condition. Their goal was to fund medical research to extend the lives of people with FA. And they were successful. They funded research that developed effective bone marrow transplant protocols for people with FA, curing them of anemia. However, as children with FA reached young adulthood, a new challenge was discovered: A number of them were being diagnosed with aggressive, deadly forms of cancer that usually affect people far older than them. Further research revealed the true nature of the condition. FA is now understood to be a DNA repair disorder, making people with FA highly susceptible to aggressive cancers. The underlying DNA repair disorder means that bone marrow transplants and cancer treatments are especially tricky—these usually involve chemotherapy or radiation, which may trigger cancer in this population.

Thanks to research facilitated by FCF, the life expectancy of people with FA is 10 to 15 years longer than when the foundation began. The first generation of adults with FA is now facing decisions about career goals, relationships and marriage, and family planning. In addition to these new opportunities, these adults also live with the knowledge that they are likely to have multiple cancers and ultimately succumb to them. FCF contacted me because there had been no published research on how adults with FA could navigate this uncharted territory.

Except it wasn’t true that no one had studied the psychosocial experiences of adults with FA. The perfect person to do this research had already started it—a young woman with FA, Amy Frohnmayer, who was also the youngest daughter of the founders of FCF. Some members of the FA community remembered her conference presentations, but her work had never been published.

Learning about Amy, I immediately felt a kinship. There were many similarities and a few key differences in our lives. Although we never met—she passed away before I learned about FA—we were around the same age, in the same field, and took similar paths across the country. Amy got her master’s in psychology at Stanford, a few miles away from where I got mine in San Francisco. Later, she pursued a master’s in counseling at OSU Bend, while I was faculty at OSU’s main campus, a couple of hours away. Most importantly, we were both driven by a lack of research on our own communities.

Digging into academic research databases, I learned that Amy had presented her thesis research at the prestigious Society of Behavioral Medicine conference and the abstract from the conference proceedings had been published (Frohnmayer, 2016). After some sleuthing, I identified her advisor at Stanford and reached out. This advisor sent me Amy’s unpublished thesis, which would form the foundation of our research.

Amy conducted mixed-methods research on young adults with FA, conducting both in-depth interviews and surveys on coping and well-being. She found that active, problem-focused coping was the most prevalent coping strategy and the one most associated with well-being. Part of active coping involved embracing FA as part of one’s identity, a source of personal growth, and as a connection to a community. However, for some participants, this presented a trade-off; embracing FA can emphasize difference from normalcy. People varied in how they found balance in their identity and community, with some moving away from an FA identity and some strongly connecting with community. Many had to step in and out of the community to manage grief as community members passed away. Amy herself was deeply involved and connected with the FA community, speaking at conferences and engaging in fundraising.

To answer the call for research on the first generation of adults with FA, I teamed up with Megan Voss, an associate professor and psychiatric nurse practitioner with experience treating FA. We received the very first psychosocial research grant from FCF.

It was crucial for adults with FA to continue to shape this research, so we used a participatory research approach. Our advisory board of adults with FA included Sean Breininger, Jasmine Bennetsen, Anna Chou, Dexter Sherrell, and the late Angela Bedoya, who passed away during the study. Our board guided us in selecting topics to research, ensuring our questions mapped onto real experiences, connected us with participants, and communicated our findings with the community.

We conducted a large-scale survey and found alarmingly high rates of mental health symptoms in adults with FA; 50 percent showed signs of probable PTSD, 33 percent had probable anxiety, and 25 percent had probable depression (Bogart et al., 2025). Compared to the general population, adults with FA in the study experienced higher fatigue, sleep disturbance, and pain; they also experienced poorer cognitive function, physical function, and social participation.

Given the high rates of mental health symptoms, it was important to examine risk and protective factors. We identified risk factors such as stigma, fatigue, and concerns about death and dying, and protective factors including disability self-efficacy and post-traumatic growth. Many of these factors, like stigma, were foreshadowed in Amy’s work: People with FA who had visible differences like smaller stature and hand differences experienced bullying. Concern with death and dying was a central theme in Amy’s findings as well, including uncertainty about the future, grief over the loss of FA community members, and survivor’s guilt. Post-traumatic growth, also reflected in Amy’s findings, includes acceptance, finding meaning in the FA experience, and appreciation for relationships. Disability self-efficacy means confidence in managing everyday challenges that arise from FA, and this was echoed in Amy’s observations that many participants engaged in problem-focused coping by playing an active role in their medical care, following frequent screening protocols, and maintaining a healthy lifestyle.

In her 2010 thesis, Amy concluded that there was a need for greater awareness of mental health issues among providers, as well as interventions to enhance well-being. This is even more true today, as adults with FA approach middle age. Amy’s thesis, our survey study, and our subsequent interview study provide insight about how to help adults with FA cope. Just as people with FA have a recommended cancer screening regimen, we recommend regular mental health screenings—and support. FCF is designing a virtual workshop series based on our research, with sessions designed to provide strategies to help with resilience, stigma, self-efficacy, and fatigue.

Amy died at age 29 from complications of leukemia. Toward the end of her life, she made a conscious decision to shift from research to studying to become a mental health counselor: People in her community needed her urgently, and she wanted to support them directly. She married the man she loved and became Amy Frohnmayer Winn. She ran, which was a grounding practice for her. A beautiful profile of Amy in Runner’s World noted, “Unlike most people on the planet, Amy couldn’t deny the fact that her supply of moments was likely limited ... She felt deeply grateful for what she did have. She couldn’t waste a minute.” In her limited time, like many of the participants she interviewed, she made a cost-benefit analysis of the best use of her time. Slogging through the slow scientific publication process was not it. I am fortunate to have that time, and I’m glad to have been able to continue her legacy.

A version of this article appeared in Psychology Today.

1. Use time blocking. I was first introduced to time blocking when I won a small award as a grad student and the prize was the invaluable (and ironically slim) book How to Write a Lot. I now gift this to every one of my graduate students. The author, Paul J. Silvia, recommends scheduling a regular block of time each day for your work and keeping a steady, sustainable pace. Ideally, it should strike a balance between a time when your energy is best for the type of work you do and a time that fits with your other responsibilities. I’m a morning chronotype, so I do my writing block first thing each day.

   While not specifically developed with people with disabilities in mind, this concept is similar to several approaches that were created to benefit the disability community. Self-described neurospicy spoonie Cassie Winter calls this “butt in chair time,” and emphasizes that time can include anything you need to do to move a project closer to completion. Sometimes this means staring blankly and thinking through ideas; other times it means writing in a flow state. Either one should be met with pride and self-compassion.

   Another technique related to time blocking is activity pacing. Originally developed for disabilities involving chronic fatigue and pain, activity pacing means keeping a consistent routine, instead of falling into boom or bust cycles. Putting in long work hours on a high-energy day or before a looming deadline can result in burnout or post-exertional malaise that lasts for days, leading to an unsustainable cycle. Those with episodic disabilities that come with unexpected flares may need to build in extra flexibility. Over time, activity pacing is actually designed to reduce flares. Activity pacing is related to spoon theory, a metaphor developed by Christine Miserandino, a member of the chronic illness community, to describe the need to ration one’s energy, and can be thought of as a way to manage your “spoons.” In her dissertation research, my graduate student Brooke Bryson found that activity pacing predicted lower fatigue among people with blood cancers better than other commonly used strategies.

2. Boundaries for time off. The benefit of time blocking is that it builds in rest time. One of the most challenging things about academic culture is that it always feels like there is more to do, and I used to feel guilty when not working. Once I have done my “butt-in-chair time,” I know I have already done the amount of work that is reasonable for me, and this boundary keeps me from feeling guilty. I don’t generally work past 5 on weekdays and usually don’t work on weekends. Looking forward to that time off allows me to experience anticipatory savoring in addition to the pleasure of rest. I look forward to self-care like cooking, working on my recipe blog, and spending time with loved ones. I also prioritize my eight hours of sleep.

3. A to-do list keeps track of tasks so your brain doesn’t have to. When managing multiple projects, it may seem like there are a million moving pieces that you could forget. You may be rehearsing the things you need to do in your head so you don’t forget, which is especially challenging if you have executive functioning or anxiety issues. Free up your working memory by writing it all down. I use a simple notes app on my phone, Google Keep, so I can jot something down whenever I think of it.

   Facing a long to-do list or a big task can be so overwhelming you can’t even start. Break a big project into small, manageable chunks on a separate, smaller to-do list. That means you eventually get to check off more things from your list and get a dopamine hit for each one!

4. Ruthless triage. According to my grad students, this is basically my catchphrase. There will always be lots of things on your to-do list, and you have to prioritize the things that are most important to your goals. Every morning, I open up my to-do list and move items around based on what is most important for me to accomplish that day. Sometimes this means prioritizing the things that are due first, but it can be easy to get caught in a cycle of putting out fires (i.e., only working on things that have immediate due dates). Some of the most meaningful work may be long-term research or writing projects that don’t have concrete due dates. Be sure to prioritize these things for your butt-in-chair time.

5. Iteration over perfection. Getting started is often the hardest part of any project. I never like my first drafts, and it is freeing to acknowledge that I probably never will. It is much easier to edit something into good shape than to write it in good shape the first time around. I think of my first draft like a sketch; I don’t even bother to stop and clean up typos, focusing more on sketching out the big picture.

   Save a new version of your work each day or use a cloud-based storage system that does this automatically. You can easily go back to a previous version if you need to. I learned this lesson the hard way while I was a graduate student analyzing the data for my master’s thesis. I realized that I had made a mistake a few days into my analysis, essentially scrambling my data. I had to throw away a week’s worth of work and start my data analysis from scratch. From then on, I began saving each day’s work in a new file, so if I find an error, I can trace it back and keep the work I did until that point.

6. Batch your emails. I get an overwhelming amount of email each day. Most emails are not truly urgent; they can wait a few hours. I’ve turned off my email notifications and only check it a few times, and only during my workday, allowing for blocks of uninterrupted work time. This prevents divided attention, task switching, and distractions, which can be especially challenging for neurodiverse people.

7. Inbox zero every day. When I check email in batches, I immediately remove it from my inbox with one of three actions. First, I archive as much as I can straight away. If the message can be answered or acted upon within a couple of minutes, I do it then. If it will require more time, I move it to a “snoozed” folder. Once every day or two, during a time not in my writing block, I tackle my “snoozed” folder like a to-do list.

8. Don’t fall into ableist traps about productivity. Productivity culture can be quite ableist, equating labor with worth. Getting things done looks different for everyone; don’t measure yourself against others’ standards. Use these tips to do the things you value most, which may or may not be the same as your work.

A version of this article appeared in Psychology Today.

The conference was a transformative experience. Suddenly, I was surrounded by people whose faces were like mine. Conference attendees quickly began to feel like family. We shared an instant connection and understood each other in a way no one else could.

Facial paralysis support groups

A few years later, I moved to Boston, home to some of the best medical centers focused on facial paralysis in the world. For the first time in my life, I lived near a support group for people with facial paralysis. I was excited to attend my first meeting, expecting that same sense of immediate kinship.

When I first arrived at a grand meeting room on an upper floor of a well-furnished plastic surgery office, I was surprised to find that I was the only person there with a congenital condition. Everyone else had acquired their facial paralysis, mostly as adults. It is more common to develop facial paralysis—from conditions like Bell’s palsy, acoustic neuroma, or injury—than it is to be born with it. No matter, I thought, we all look similar to an untrained eye. Surely we’ve had similar experiences.

As people introduced themselves, a stark contrast emerged: my peers spoke of a "before" and "after." Some of these stories involved traumatic injuries or surgical accidents; others simply woke up one day with paralysis. Themes of loss permeated every story: loss of identity, loss of perceived beauty, loss of function, loss of friends.

When it came time for me to introduce myself, I realized I had no “origin story.” My facial paralysis was an inextricable part of my identity; I have no idea what I would be like without it.

When I was born, it was clear that I had some sort of facial weakness. It took two years of my parents’ persistence seeking doctors’ opinions before getting the correct diagnosis of Moebius syndrome. In many ways, I am privileged that my parents were the ones to take the lead in learning about my condition and adapting to it.

Insight into adaptations

As the meeting continued, people focused on the new challenges they were experiencing because of facial paralysis. A woman shared that her favorite weekend morning ritual used to be enjoying coffee and a bagel while reading a newspaper. But she felt that facial paralysis had robbed her of that activity. Now, whenever she took a bite or a sip, it fell out onto the newspaper.

In that moment, I realized I had been using a “life hack” my entire life without even knowing it. I have always loved reading, but I never had that problem because I instinctively prop whatever I am reading at eye level. Because I was born with this condition, I had developed subconscious adaptations, turning what others saw as a challenge into second nature.

I’ve now attended facial paralysis support group meetings in four states and three countries, and I am usually one of the only people with congenital facial paralysis in the room. I’ve gained so much from these meetings: insight, support, and lifelong connections. They taught me about my own expertise with facial paralysis and allowed me to help others adapt. I’ve worked hard to develop a positive disability identity, and these meetings made me proud of how I adapted.

However, these meetings could also be upsetting at times. The focus is often on “recovery”—a return to a previous state of functioning that is simply not possible for me. Attendees didn’t want to live the rest of their lives with facial paralysis like me. Some people refused to leave their houses for months. Some fell into deep depression. Although I could understand the emotional pain people were in, it was hurtful to hear how devastating my reality was to other people.

Including congenital disability in psychology

The focus on acquired disability is mirrored in the field of psychology itself. Most research in psychology centers on acquired disability. Indeed, the field of psychology specifically focused on disability is called rehabilitation psychology. The name implies a focus on helping people with acquired conditions return to a previous state of functioning. Theories of “adjustment” to disability were usually focused on stages of grief or adapting to loss.

Inspired by my experience in support groups, I began a new line of research examining differences in adaptation between people with acquired and congenital disabilities.

My research finds that, in general, people with congenital disabilities fare better than those who acquire a disability later in life, something I call the congenital advantage. This may be explained by disability self-concept, which includes disability identity and disability self-efficacy (i.e., confidence in managing disability symptoms). People with congenital disabilities go through their initial development, learn to navigate the world, and form their identities alongside their disability, all at the time when they are most cognitively flexible. Those who acquire disability, especially after childhood, must adapt to a changed identity and relearn how to function, putting them at a disadvantage in developing disability self-concept. In one study, I found that people with congenital mobility disabilities had a higher disability self-concept than those with acquired disabilities, which in turn was linked to greater life satisfaction.

Psychology has neglected to consider the experiences of people with congenital disabilities, minorities within a minority. In addition to the unique resilience that many with congenital disabilities demonstrate, there are plenty of factors—such as a higher risk of experiencing ableism and the crucial role of early family support—that are under-examined.

People with congenital disabilities are an untapped resource full of insights about living with a disability. As I can attest, support groups and disability community building can be a great source of insight and resilience. There is great promise in cross-disability groups, where those who have spent a lifetime navigating the world with a disability can mentor those who recently acquired disability.

A version of this post appeared in Psychology Today.

I’ve always had an irrational fear of opening a can of biscuits. As I unwrap the cardboard tube, I never know exactly when the vacuum seal will pop. No matter how hard I try, I can never fully mentally prepare myself. Without fail, the pop takes me by surprise and I startle, dropping the dough on the floor.

System 1 and System 2 Thinking

The meme represents my favorite way to teach about a foundational concept in social psychology: the dual process model of cognition. As Daniel Kahneman explains, there are two modes of thinking: fast and slow. Sometimes this is called system 1, or automatic processing, and system 2, or controlled processing, respectively. System 1 thinking is an evolutionarily old pathway that responds to stimuli quickly and automatically, based on instinct or intuition. On the other hand, system 2, or controlled processing, engages functions of the brain that we consider uniquely human—our prefrontal cortex for logic and reasoning. System 2 thinking is less efficient. It takes more time and energy to do, but it allows us to make well-reasoned decisions and behave in intentional ways. We respond with System 1 first, and System 2 kicks in later, if we have the time and mental bandwidth.

Our social and physical world is highly complex and difficult to process—”a blooming buzzing confusion” as William James wrote. Automatic processing allows us navigate the world efficiently without expending too many cognitive resources. For example, think back to your last commute. Did you have to think consciously about turning the key in your ignition to start your car? Chances are you barely remember your drive, because it didn’t require much conscious processing. Suppose a car suddenly swerved into your lane. If you were a skilled driver, you would probably brake and steer out of the way automatically, before you even knew what happened. As your conscious processes kicked in split seconds later, then you could make more strategic decisions about whether you should steer back into the lane after the car passed, or whether you should wait for traffic before continuing. Ideally, when automatic and controlled processing work together, they keep you safe and help you meet your goals.

However, sometimes system 1 and system 2 thinking are in conflict with each other. The biscuit meme is the perfect metaphor for this conflict. Consciously, I know that the loud pop and small explosion will not hurt me, and as much as I try to prepare myself for it, my automatic response kicks in faster. I yelp and the biscuits are on the ground before I even know what happened.

Implicit and Explicit Bias

We engage automatic and controlled processing in social situations as well. When we meet new people, we usually form impressions of them quickly and automatically based on previous experiences or stereotypes.

You may have heard of implicit vs. explicit bias, which map on to automatic and controlled processing, respectively. Due to associations we’ve picked up from the culture that surrounds us, most people harbor implicit biases toward stigmatized groups like racial minorities and people with disabilities. For example, implicit ableism may lead someone to avoid a disabled person for fear of contagion or in hopes of skirting an awkward interaction. Or we may make automatic assumptions about how capable someone is for a job.

The good news is that explicit conscious bias is in decline. If people are aware that they harbor unconscious bias and are motivated to rectify it, they can engage their controlled processing, examine their thoughts and behaviors, and change them.

Returning to our example of ableism, this could mean overcoming initial hesitation and engaging in a conversation with the disabled person. When considering a disabled person for a job, you could make a point to ask about their previous experience and do some research on accessibility. Correcting bias after recognizing it in your behavior becomes easier with practice. Your attitudes and behavior will become more automatic over time.

As for my biscuit drama, I now consciously set myself up for success by opening biscuits over a pan.

A version of this post appeared in Psychology Today.

Comprising 26% of the adult U.S. population, people with disability represent the largest minority group and perhaps the only minority group you can join at any time. However, disabled researchers and—consequently, I would argue—disability research, is severely underrepresented in psychology. In a report examining the years 2006 to 2012, only 2% of faculty and 3% of students in APA-accredited programs reported a disability. More recently, the National Science Foundation reported that only 3% of STEM workers had a disability in 2021.

Self-relevant research is widespread in the field of psychology, yet we fail to recognize the most prevalent kind as such. Our field has long been criticized for sampling primarily Western, educated, industrialized, rich, and democratic (WEIRD) participants. Interestingly, there is so little attention paid to disability in psychology that its absence has not even been noted in that acronym. I might propose adding a new letter, for “abled,” leading to WEIRDA. Unsurprisingly, WEIRDA samples match the demographics of the academics doing the research and the editorial teams of top journals. Thus, one might argue that WEIRDA samples are also self-relevant research.

When people in the majority group study the majority group, their research is perceived as universal and objective; when minority group members study experiences of their own group, it may be perceived as subjective and biased. This is because dominant identities—e.g. whiteness, abledness, etc.—are often perceived as the default or neutral. In contrast, research on identities and experiences that are outside the dominant group is perceived as less important or relevant; it is seen as niche and relegated to “specialty” journals. Thus, self-relevant research on minorities is more likely to be classified as such compared to self-relevant research on majority samples.

Another reason self-relevant research is more common than it appears is that not all minority identities are visible. The distinction between visible and invisible identity affects the salience of self-relevant research, or whether it is identified as self-relevant at all. When a person has an invisible minoritized identity (e.g. a mental health condition or a chronic pain disorder), people may assume the default—as discussed above: that the person is a majority group member. As a visibly disabled researcher, anyone who views my headshot or listens to me speak at a conference can make the connection between my identity and my research. This experience is shared by many members of racial and ethnic minorities and some sexual and gender minorities whose identities are visible.

In a study of clinical, counseling, and school psychologists and students, more than half of participants reported engaging in self-relevant research. Compared to majority group members, minorities were more likely to report conducting self-relevant work. This study also found that self-relevant researchers were rated as more biased and having poorer judgment compared to researchers who did not conduct research relevant to themselves. Participants who reported not engaging in self-relevant research made more stigmatizing judgments of self-relevant research than participants who reported having conducted self-relevant research themselves.

A Personal Example

As a case study of the benefits and challenges associated with self-relevant research, I’ll describe some of my own experiences as a self-relevant disability researcher. I was born with a rare neurological disorder, Moebius syndrome, which results in facial paralysis. Communicating in an unusual way made me fascinated with social interaction, drawing me to psychology. As an undergraduate, I wanted to do a term paper on Moebius syndrome. However, I was frustrated to discover that there were only a handful of studies on the topic in psychology. The existing research examined Moebius syndrome with the purpose of better understanding “normal” processes. Critics have noted that majority group members researching minorities often take a deficit approach, with a goal of understanding dominant groups rather than understanding or improving the daily lives of minorities.

Recognizing the need to fill the gap in research on quality of life among people with Moebius syndrome and other conditions involving facial paralysis, I realized I had the unique motivation and insight to build this field. While pursuing graduate work, I found it challenging to find mentors. Psychology graduate programs follow an apprenticeship model, which hinges on finding a mentor who is an expert in your chosen field of study. The lack of psychologists studying facial paralysis combined with the paucity of role models with disabilities were barriers to finding a suitable graduate program.

Eventually, I found excellent mentor-allies with expertise in broader areas that could be related to facial paralysis. At the start of my graduate work, I also connected with Moebius syndrome and facial paralysis communities for the first time. These connections were invaluable, providing me with an understanding beyond my own experiences of the issues facing this diverse group of people. I have since conducted some of the largest and most comprehensive psychosocial studies of facial paralysis.

Challenges of self-relevant disability research

The most common argument against self-relevant research is that it interferes with objectivity. Critics may argue that a self-relevant researcher may overweight their own perspective at the expense of others when conducting research. Of practical concern is that a self-relevant researcher may have preexisting relationships with participants and community organizations. If a participant knows a researcher, the participant may feel social pressure to participate or to respond in ways that the researcher might approve of.

Benefits of self-relevant disability research

As exemplified in my experience, self-relevant researchers may be motivated to fill research gaps and make discoveries that otherwise would not be explored. Shared identity between researchers and participants builds trust and engagement, especially in marginalized populations that may mistrust science due to previous harms. Insider knowledge may promote more valid and representative research questions, study designs, sampling, interpretation, and implementation of findings. Thus, research is more likely to directly benefit the community.

Maximizing the cost-benefit ratio of self-relevant research

Considering positionality. Positionality statements have been an important tradition in qualitative research, but are less common in quantitative work. Positionality statements are a transparent acknowledgement of the ways in which one’s own perspective as a researcher has influenced one’s work. There is a growing movement to include positionality statements in quantitative psychology research as well. When majority group members engage in positionality statements, it may prompt reflection and encourage them to conduct more inclusive team science.

Those with invisible identities can choose not to disclose the self-relevance of their research, while those with visible or apparent identities do not have this privilege. Thus, it should be noted that positionality statements put people with invisible identities in a position where they may feel expected to disclose a self-relevant identity but do not feel safe doing so. Fear of disclosing due to stigma speaks to a larger systemic problem that must change, but in the meantime, it is important to consider this paradox.

Participatory research. Organizations and funders are now calling for community-based participatory research. This approach asserts that community stakeholders with lived experience should co-produce science with researchers. Best-practice guides for this type of research focus on decentering power structures, building knowledge, skills, and trust, and co-creation at every level, with the goal of developing research that solves the self-identified problems of communities.

Conclusion

As our field moves closer to fully open science, we need transparency around diversity. Psychology’s WEIRDA self-relevant research will continue until we diversify our education, researchers, peer reviewers, and editorial boards. Destigmatizing self-relevant research will increase the recruitment and retention of diverse researchers, further enhancing the science that is produced in our field.

A longer version of this article appears in Communications Psychology.

Bogart, K.R. (2024). Increasing disability inclusion through self-relevant research. Communications Psychology, 2(9). https://doi.org/10.1038/s44271-024-00056-x

Defining Ableism: Some Key Terms

Ableism can be defined as stereotyping, prejudice, or discrimination toward people with disabilities. Ableism, like other forms of bias against social groups, is an attitude. It can be implicit or explicit, subtle or overt.

The ABC’s of Attitudes

According to social psychology, attitudes are composed of three parts, and they can be remembered with the acronym ABC.

• A is for affect, or emotion.

• B is for behavior.

• C is for cognition, or thoughts and beliefs.

Colloquially, people often use the terms stereotyping, prejudice and discrimination interchangeably, but they actually have specific meanings in psychology that correspond to the ABCs of attitudes.

• Stereotyping is about cognition, or beliefs that certain attributes are characteristic of numbers of particular groups.

• Prejudice is based in affect, or negative emotions about numbers of a particular group.

• Discrimination refers to behavior acting on stereotyping or prejudice.

Dimensions of Warmth and Competence

A theory from social psychology, the Behavior from Intergroup Affect and Stereotypes (BIAS) Map, suggests that most stereotypes, prejudice, and discrimination follow a predictable pattern.

This theory states that we form stereotypes about people based on two dimensions, their perceived warmth (e.g. friendliness, kindness, and trustworthiness) and their perceived competence (e.g. capability and intelligence). There are adaptive reasons to form these quick impressions. We want to know as soon as we encounter someone if they are a friend or foe, and if they could be helpful or harmful.

Disabled people, along with children, older adults, and women, are stereotyped as warm but incompetent. This is called the paternalistic stereotype cluster, because these groups are viewed as low status, unable to help themselves, and in need of protection.

Cognitions of warmth and incompetence elicit emotions of pity. That is, because people with disabilities are viewed as incapable, their “unfortunate” situation is perceived as not their fault. Stories and media are full of depictions of disability as pitiable, such as the newly disabled main character in Me Before You, who feels so sorry for himself that he believes he is better off dead than a burden to others and kills himself.

Emotions of pity lead to behaviors of active facilitation (e.g. patronizing help) or passive harm (e.g. neglect or avoidance). A common example of patronizing help is when bystanders jump in to “help” a person with a disability who did not ask for or need it. Passive harm can involve excluding people with disabilities, failing to provide accommodations, or passing them up for job or promotion opportunities.

As a side note, you may be curious about the other stereotype clusters. You can view a figure showing all the warmth-competence combinations here. People who are stereotyped as cold and incompetent include houseless people and welfare recipients. This elicits contempt and harmful behavior. Those who are stereotyped as cold yet competent (e.g. CEOs, model minorities) are the subjects of envy which can prompt hostile acts. Finally, those who are judged as both warm and competent are admired, and people try to emulate or affiliate with them. Oprah is a classic example of someone who is often viewed in this admirable stereotype. There is a reason her book club and “favorite things” are so popular!

The stereotype content model illustrates that disability is but one of many social identities that we have stereotypes about. it’s helpful to think about similarities across “isms” like ageism and sexism that we might learn from. There is a dearth of research on ableism and ageism—studying one can likely help us fight the other.

A version of this post appeared in Psychology Today.

Coauthored by Emma Hills and Kathleen Bogart, PhD

Despite having a desire to find work, many people with disabilities face challenges finding employment in the workforce. As of January 2026, the unemployment rate for persons with disabilities was almost double that of non-disabled individuals. Considering recent attempts by the current federal administration to roll back and de-incentivize programs that encourage diversity, equity, and inclusion in the workforce, it is more important than ever to address the systemic barriers preventing people with disabilities from joining and thriving within the workplace, especially those that occur without our conscious knowledge.

What are implicit biases?

While it’s only one part of the puzzle, implicit biases against people with disabilities are a widespread and often overlooked component of discrimination in the workplace. Implicit biases are unconscious negative attitudes that one may hold against specific social groups, such as people with disabilities. We use biases in our everyday lives as shortcuts to help us interpret and navigate the world around us. They can be helpful, quick, and low-energy ways to make decisions. But if left unchecked, even unintentional biases can undermine inclusion and perpetuate discrimination.

Read the full article

You can watch it here:

Or read my essay based on the talk:

I became a psychology professor because I’ve been interested in communication ever since I was born. I was born with Moebius syndrome, a disability characterized by facial paralysis and the inability to move my eyes from side to side. At an early age, I understood that the way I communicated was unusual, that people were confused by my lack of facial expression. I became fascinated with communication: facial expression, body language, and words. I became more expressive in other channels, something I now call alternative expression.

My interest in communication led me to study psychology as a college student. I set out to do my very first college term paper on Moebius syndrome. I showed up at the library expecting to find pages and pages of answers, but I discovered that there were only a handful of psych papers published on it. This was bad news for two reasons: First, psychologists weren’t interested in helping people with Moebius syndrome, and second, I didn’t have enough sources to write my term paper. That was the moment that crystalized what I would do with my life: I realized I was uniquely qualified and motivated to build psychological research about facial paralysis and other disabilities.

I went to graduate school, became a social psychology professor, and have published the largest and most comprehensive studies of facial paralysis in psychology. For example, I have documented that the alternative expression I developed as a child is an effective strategy used by a lot of people with facial paralysis. Check out the photo of me from my 5th birthday. Notice that I am already very expressive! You can tell that I’m really excited about my bunny cake and am mimicking the shape of the bunny ears.

Models of disability

Let’s get philosophical for a minute. I want to examine our underlying assumptions about what disability is and what causes it. Experts categorize ways of thinking about disability into three general “models,” the moral model, the medical model, and the social model (Olkin & Pledger, 2003).

Under the moral model, disabled people or their families are morally responsible for their disability. According to this model, disability is a punishment for sins, a representation of internal evils, a curse, or a result of karma. We might call the moral model archaic, but it is still the most common model of disability in the world.

We still see evidence of this model in our culture today. For example, Hollywood has a long history of using disability as a symbol of villainy. Picture Freddy Kruger, the Joker, and almost all Bond villains. The Disney villains Scar from The Lion King and Captain Hook from Peter Pan are literally named after their visible differences. These depictions perpetuate cultural associations between disability and evil.

Today, the medical model is the way most people in the West think about disability by default. This paradigm views disability as the direct result of pathologies in the body or mind, which it aims to cure. The medical model offers valuable innovations for treating uncomfortable and painful symptoms. However, this model locates the problem within the disabled individual, and the responsibility for treating the disability is limited to the disabled person, their family, and an esoteric group of healthcare specialists. Limiting this responsibility perpetuates the idea that disability is an exception, rather than a common human experience. Our understanding of disability is incomplete until we consider social factors.

That’s where the social model comes in. This model is used by many disability activists and scholars. It asserts that society is the primary cause of disability, and the “problem” lies in society, not in the individual. Society’s lack of accommodation of human variation is viewed as the cause of the disabling experience. Disability occurs because societies are constructed based on the assumption that everyone can, for example, see, hear, and walk.

I have a riddle for you: There is an impairment that more than half of Americans have, but we don’t consider it a disability. Think for a minute about what it might be. Are you ready? It’s refractive error, or, in simple terms, needing glasses or contacts (Vitale et a., 2008). Why isn’t the need for corrective lenses considered a disability? Well, because it’s common, removing stigma. Lenses seem like simple accommodations because they are widely available, effective, and inexpensive. But it’s not that glasses and contacts are inherently easy to make; it’s that we were motivated to devote the resources to doing so. In fact, glasses may be the first assistive technology, developed in the 13th century (Ilardi, 2007). Our society values equity and inclusion, so we can and should do this for more human variations, no matter how common or rare.

Ableism

Disability is broadly defined by the Americans With Disabilities Act as a physical or mental impairment that substantially limits at least one major life activity, a history of impairment, or being perceived by others as having an impairment. Stereotypically, we picture a person in a wheelchair when we think about disability. It’s literally the symbol of disability. However, disability is much broader. Some disabilities are invisible, like chronic pain, learning disabilities, and significant mental health conditions. Others are quite noticeable, like facial paralysis or Down syndrome.

About 25% of American adults have a disability, making it the largest minority group in the country. Disability intersects all other identities, like race, gender, and sexuality, and it is perhaps the only social identity you can join at any time. Ableism is the stereotyping, prejudice, discrimination, or oppression of people with disabilities (Bogart & Dunn, 2019). It can be subtle, such as when someone avoids talking to a disabled person because they are afraid of saying the wrong thing, to overt, such as hiding people with disabilities away or relegating them to back-room jobs. Ableism is sometimes called the “forgotten ism,” because it is often left out of conversations about minorities and diversity.

Facial paralysis

At least 230,000 Americans are born with or develop FP each year. Facial paralysis can be congenital, or present at birth, like Moebius syndrome, or acquired at some point after birth, like from Bell’s palsy, acoustic neuroma, or injury. There are many ways to develop facial paralysis throughout one’s life.

For my research, I’ve interviewed and surveyed hundreds of people with facial paralysis. The major theme of these conversations is that facial paralysis is a highly visible, but unrecognizable disability, meaning that when someone with facial paralysis walks into a room, strangers will notice their facial difference, but will not be able to recognize the difference as paralysis.

Instead, people with FP hear all sorts of “interpretations” of their appearance. “Did you just get back from the dentist?” “Are you having a stroke?” Strangers also misinterpret a lack of facial expression as unhappiness or unfriendliness (Bogart et al., 2014; 2015).

In the largest survey of people with facial paralysis, I found that approximately a third had moderate to severe depression, and the main predictor of depression was experiencing ableism (Bogart, 2020).

So, for all of these reasons, the most common request from the FP community is greater public awareness to stamp out misconceptions and ableism.

Alternative expression

Human communication involves much more than facial expression. Indeed, my research finds that people with FP, especially those who were born with it, increase their expression in other channels, something I call alternative expression (Bogart et al., 2012). One woman had the interesting observation that she felt her voice was her face when she was expressing herself. People used gestures: Touch to create closeness; humor to disarm people; and even style. A nurse with Moebius had taken to wearing a happy face pin and found it put patients at ease.

Facial paralysis in the pandemic

Meanwhile, here we are in the middle of the pandemic, wearing face masks to prevent the spread of COVID-19. People with facial paralysis like me have been trying to educate the public about it for years. It took a global pandemic, but people without facial paralysis are finally starting to understand what it is like to not be able to smile at cashiers and passersby.

People with FP are already experts at alternative expression, and those without can learn from us at this time. The first thing I did when I learned I needed to wear a mask was to engage my alternative expression skills to find a fun, cheerful mask. Pandemic, but make it fashion! I know how to smile with my voice and pepper in laughs.

In some ways, face masks are the great equalizer for people with facial differences. They conveniently allow us to pass as normal, affording us civil inattention as we jaunt to the grocery store without being noticed. Although I will continue to wear a mask for a while for health reasons, it does bring mixed emotions. Personally, I feel a little like I am betraying my hard-won self-love and disability pride when I wear a mask that hides my FP. But at least I know I am well-equipped to communicate in the meantime.

On the flipside, all of our pandemic videoconferencing puts me at a disadvantage. As a professor, I spend a lot of time talking to others via Zoom. The small Zoom window really restricts alternative expression, and I find myself pushing my camera back to include at least my arms and torso so people can see more body language.

Normalizing adaptations

The pandemic is normalizing adaptations that have been long used by the broader disability community. Accommodations disabled people fought for and were denied—like working from home, telemedicine, and grocery delivery—have now suddenly been adopted by society at large. When the majority of society is disabled by conditions surrounding the pandemic, accommodations suddenly seem justifiable to the public. This is the perfect illustration of the social model of disability. When people with disabilities are in the minority again, don’t forget these adaptations.

My research shows that educating people about facial paralysis and looking for alternative expression, like I’ve done in this post, reduces ableism. People with facial paralysis have developed skills to communicate without facial expression, and now the general public is being invited to rethink their communication, as well.

There are many human differences that result in diverse ways of expressing yourself, like culture, gender, and disability. When the pandemic ends, remember what you’ve learned about expressive diversity.

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A new way to learn about disability as diversity

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