Experiences of Disability
Feb 14th, 2021 by FayOnyx
Standard advice for creating disabled characters always includes doing research. However, despite the wealth of information about disability that is online, it can still hard to find clear information on what it is like to live with a disability. This resource is designed to help by collecting common experiences of disability that many disabled people share and pulling together resources that provide insight into specific disabilities.
Six disabled people of color smile and pose in front of a concrete wall. Five people stand in the back, with the Black woman in the center holding up a chalkboard sign reading “disabled and here.” A South Asian person in a wheelchair sits in front. Photo from Disabled and Here.
Common Disability Experiences
Despite the fact that disabled activists frequently talk about common experiences, like extra costs and inaccessible locations, that are shared by many (but not all) disabled people, it can be surprisingly hard to find information these disabled experiences. This list is my attempt to fill in this gap. It is a living document that will be gradually added to and updated over time. Please let me know if you have something you would like me to add or change in this list. 🙂
I’ve broken this list into sections because I think that, especially for speculative fiction, it is useful to know which experiences are more directly tied to disability and which ones come primarily from ableism. The goal is to make it easier for storytellers to identify which things to keep and which things to change as they create different settings.
Disability Itself
- Visibility and Invisibility: Some people have visible disabilities that are readily apparent, while others have invisible disabilities that aren’t immediately noticed. Meanwhile other people are in between, or go back and forth depending on what assistive devices they are using at the moment.
- Limited Capacity: Many people with chronic illnesses and other disabilities have significant limitations on their capacity to do things. This means making choices about how each little piece of capacity is spent, like choosing between having a shower and cooking a meal, because there isn’t enough capacity to do everything. It can also mean needing to prioritize self-care in order to maintain the ability to function.
- Trade-offs: Treatments for many disabilities come with choices between different options that each have side effects and limitations. For example, this can be a choice between two different medications that have different benefits and side effects. Another example is the choice between purchasing a manual or power wheelchair.
- Time Costs: Time is one of the hidden costs that come with disability. Some disabilities increase the time needed to do everyday things, such as showering or making a cup of coffee. Treatment and self-care for many disabilities can also be time-consuming, such as the time needed to do daily physical therapy exercises.
- Triggers: People are most aware of trauma triggers that set off a replay of a traumatic event, but a wide range of mental and physical disabilities have symptoms that are triggered by specific things. While a wide range of conditions have triggers, the way those triggers work and the symptoms they cause vary. For example, there are anxiety triggers, migraine triggers, and substance abuse triggers. In addition, many chronic illnesses have flare-up triggers.
- Flare-ups: Some people with chronic conditions experience flare-ups where their symptoms suddenly gets significantly worse. Flare-ups can be triggered by specific things or can come out of nowhere.
- Brain Fog: This is an experience of not being able think clearly and mental confusion that affect memory, focus, learning, and decision-making. It is called brain fog because “it can feel like this cloud on your head that reduces your ability to think clearly.” Brain fog is a symptom of many disabilities, including depression and chronic fatigue. It can also be a side-effect of certain medications.
- Sensory Overload: People experience sensory overload when there is too much sensory stimulation for a person’s brain to process. Sensory overload can cause someone to struggle to function in multiple ways; they may tense up, become irritable, not be able to focus, become over-sensitive, or shut down. This is a symptom of a wide range of disabilities, including ADHD, autism, anxiety, PTSD, DID, fibromyalgia, multiple sclerosis, and chronic fatigue.
- Intersecting Identities: The majority of people with disabilities have at least one other marginalized identity, and many have multiple intersecting marginalized identities. This includes people of color, women, LGBTQIA+ folks, religious minorities, youth, and elderly individuals. As these other identities intersect with disability, they create unique experiences of oppression.
- Access Intimacy: Mia Mingus explains that access intimacy “is that elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level. Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years. It could also be the way your body relaxes and opens up with someone when all your access needs are being met.”
Ableism Intersecting with Disability
- Communication Barriers: Disability combined with a lack of accessibility regularly creates barriers to communication. This can happen in obvious ways when accommodations are lacking for people with disabilities that affect hearing, reading, writing, understanding, and speaking. It can also happen in less direct ways, such as social norms that make disabled people feel unwelcome by tolerating microaggressions.
- Online Connection: Many disabled people, especially those with chronic illnesses, spend a lot of time at home; being able to connect with others while we are physically isolated is important. Online disability community can also provide validation and support for disabled people who are struggling with ableism. The challenge of this is many online spaces allow harassment and abuse of marginalized users.
- Inaccessible Locations: Many disabled people have places that they can’t go or need to avoid. Because disability is diverse, there are different ways places can be inaccessible. For example, a building can be inaccessible because it lacks wheelchair accessible restrooms, isn’t connected to accessible transportation, has an overstimulating environment, or is filled with petrochemical fragrances.
- Binary Access Needs: This is a term that I made up to describe access needs that are either met or not. For example, a multistory building has an elevator or it doesn’t. While this is an imperfect understanding of access needs, it works okay for some. For example, my chronic back condition gives me certain binary access needs, such as needing someone to lift heavy objects for me and needing physically supportive furniture any time I want to sit longer than twenty minutes. When a binary access need isn’t met there is a clear, direct barrier that completely prevents a disabled person from doing something. Binary access needs are comparatively easy to explain and defend. (Article to be released on January 31, 2022)
- Nonbinary Access Needs: This is a term that I made up to describe access needs that can’t be understood in a binary way, and trying leads to misunderstanding, judgment, and stigma. For example, rather than not being able to do an activity, a disabled person might have a limited ability to participate that is quickly exhausted. A disabled person might have a limited tolerance for something harmful. The consequences of not meeting an access need might be hard to perceive. Or an access need might not have an easy to define “met” or “not met” state. Nonbinary access needs can be harder to explain and are more frequently dismissed. (Article to be released on January 31, 2022)
- Extra Costs: Crip Tax and Disability Price Tag are terms disabled people use for the many hidden financial costs of being disabled, such as needing to buy costly ready-to-eat food, expensive hearing aid batteries that aren’t covered by insurance, and needing to hire a taxi because the area you are in doesn’t have an accessible subway station.
- Lost Time: Navigating around accessibility barriers can be time consuming. For example, it takes time to navigate partially accessible locations that have more staircases than ramps, and to track down and wait for assistance at understaffed businesses.
- The Burden of Asking for Accommodations: Rather that doing the work to proactively provide accessibility information and resources, many groups put the burden of requesting accommodations onto disabled people. As a result, many disabled people can’t just go to a business or event, we have to research, request, negotiate, and plan accommodations in advance. The toll this takes adds up. Having to ask for and arrange help multiple times a day is draining.
Pure Ableism
- Suspicion: Many disabled people, especially ambulatory wheelchair users and those with invisible disabilities, are accused of faking their disability. This scrutiny and hostility can be especially intense around accessible parking and service animals.
- Stares and Dismissal: People with visible disabilities regularly have to deal with stares, discriminatory comments, and people looking away. Meanwhile, people with invisible disabilities have to deal with disbelief and comments like, “But you don’t look sick.” In both cases, disabled people struggle to be heard, believed, and taken seriously.
- Well-meaning “Help”: These are both in-person “helpers” that fail to listen to the needs of the disabled person they are “helping,” and people who give unsolicited advice. While this “help” is often well-meaning, underneath it are the condescending assumptions that we don’t know what is best for ourselves and that we aren’t working to make our own lives better.
- Forced Intimacy: Mia Mingus uses the term “forced intimacy” to refer to “the common, daily experience of disabled people being expected to share personal parts of ourselves to survive in an ableist world.”
- Invasions of Personal Space: Non-disabled people regularly invade the personal space of disabled people by touching people’s bodies, assistive devices, and service animals without permission. Three egregious examples are non-disabled people, “people draping coats or purses on the back of a wheelchair, people using a tray on a wheelchair or the seat of a walker to hold their drinks or food, and people leaning on wheelchairs and scooters in lines.” In addition, crowding a disabled person can make them uncomfortable, interfere with their ability to interact, and make it harder for them to physically maneuver.
- Intrusive Questions: Non-disabled people regularly treat disabled people as if they are obligated to share their personal story and to explain complicated disability concepts. These questions are frequently intrusive and inappropriately timed.
- Inspirational Disability: This is treating disabled people as brave or inspirational for living their everyday lives. It also includes treating the accomplishments of disabled people “as if they are supposed to mean something about the ability of able-bodied people to accomplish things.” Another side of inspirational disability is heaping praise on non-disabled people for treating disabled people with basic kindness and respect, something disabled people are expected to be grateful for.
- Lack of Power over Healthcare: Doctors, psychiatrists, and other medical professionals are authorities with power. Despite the fact that patients are experts too—experts in our symptoms, bodies, and experiences—we have very little power of our own. Patients only have access to the tests, treatments, and choices that our medical providers give to us. This is a major access barrier, because ableism, sexism, racism, fatphobia, and other intersecting forms of oppression regularly create situations where medical providers refuse to believe our symptoms are real, are as bad as we say they are, or that we deserve treatment.
Experiences of Specific Disabilities
This section is my favorite resources for understanding and representing specific disabilities. The goal of this section is to collect resources that uniquely capture the lived experience of different disabilities. I’ll be gradually adding to it as I find new resources. Recommendations are welcome.
Multiple Disabilities and Experiences that Cross Disabilities
How to Write Disabled Characters: This new series contains “interviews with chronically ill and disabled people on how to write characters with their conditions.”
Casual Ableism: The Empathy Issue: “See, there are a lot of mental illnesses and disabilities out there — I couldn’t even begin to list them all — that prevent people from being empathetic and even making themselves be empathetic… They can’t. They’ve tried. They’ve gone to therapy for years, seen multiple different people, and still, it’s just not there. And that is 100% okay. They’re still good people. They’re not killers, psychopaths, sociopaths or even bullies. They have families they love and kids and friends and pets and plants and jobs…”
Job Accommodation Network List of Disabilities: This is a great resource for finding specific ideas for accommodations. While this list is focused on employment accommodations, many of these tools and strategies can be applied to other areas of life.
Understanding Psychosis: A six and a half minute video with accurate subtitles on what psychosis is and how to help someone experiencing psychosis.
Albinism
The Vision of a Person with Albinism: This YouTube video has text and images illustrating the ways that albinism impacts vision.
Anxiety
Anxiety Tools: This is a list of some of my personal tools for dealing with anxiety. These are tools that characters who are receiving mental health care can use to cope with difficult situations.
Attention Deficit Hyperactivity Disorder (ADHD)
How to ADHD: This series has over 150 videos (with subtitles) examining different aspects of ADHD, like ADHD and Sleep, 10 ADHD Myths that Just Won’t Die, ADHD & Work Accommodations, Gamify Your Life, ADHD and Motivation, and ADHD Proof Your Schedule. “This channel is my ADHD toolbox — a place to keep all the strategies I’ve learned about having and living with ADHD.”
Autism
People with Autism Can Read Emotions, Feel Empathy: A discussion of research on alexithymia and autism. “We found that individuals with autism but not alexithymia show typical levels of empathy, whereas people with alexithymia (regardless of whether they have autism) are less empathic. So autism is not associated with a lack of empathy, but alexithymia is.”
A Helpful Online Safety Guide for People With Autism Spectrum Disorders: “People from all walks of life and all kinds of backgrounds fall victim to online bullying and cybercrime, but studies have shown that those with an autism spectrum disorder (ASD) are more susceptible to online threats than others.”
Blindness
Blindfolding People Doesn’t Help Them Understand Blind People: A discussion of the way simulating blindness with blindfolds gives non-disabled people an exaggerated negative view of what it is like to be blind.
How I Use my Phone for Orientation and Mobility: Detailed examples of the different apps that blind and low-vision people can use as tools for navigating their environment.
Blind/Visually Impaired Characters: How to respectfully portray blind and low-vision side characters and main characters in tabletop role-playing games. Much of this information applies to storytelling in general.
Lucy Edwards’ YouTube Channel: Lucy creates videos about her daily life, adventures, and how she accomplishes a wide range of tasks as a blind person.
Zenith in Action: Watching my Guide Dog Work: A video with both subtitles and audio description of a guide dog performing his most common navigation tasks.
Dissociation
Dissociation FAQs: A clear description of dissociation, definitions of related terms, and discussion of the different types of dissociative disorders.
Limb Difference
I have one of the most advanced prosthetic arms in the world — and I hate it: Britt H Young writes about her experiences with prosthetic arms and the larger cultural dynamics around the development of prosthetic limbs.
Obsessive Compulsive Disorder (OCD)
Twitter Thread by Shira: “So many people don’t realize that they have OCD because actual obsessive compulsive disorder is rarely talked about openly. So here are the basics…”
Post-traumatic Stress Disorder (PTSD)
Triggers: What Are They?: This resource has a good explanation of triggers and a helpfully detailed list of examples.
Sensory Processing Disorder (SPD)
From Wikipedia, “Sources debate whether SPD is an independent disorder or represents the observed symptoms of various other, more well-established, disorders.” “Sensory processing issues represent a feature of a number of disorders, including anxiety problems, ADHD, food intolerances, behavioral disorders, and particularly, autism spectrum disorders.”
Sensory Anxiety: Not Your Ordinary Anxiety: A clear description of the ways that anxiety from sensory issues differs from other types of anxiety, focusing on the personal experiences of the author, Kelly Dillon. There is also a short and clear description of sensory processing disorder and coping strategies.
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