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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

These experiences come directly from disability and treatment. Even in drastically different settings, the core of these experiences will be present, even if the details vary.


Ableism Intersecting with Disability  

This is the mushy middle of experiences that are a combination of disability and ableism. Many of these, like extra costs and inaccessible locations, start with the real needs of disabled people meeting an inaccessible society. In different settings, the underlying needs of disabled people for connection and access will remain the same, but the resulting experiences will change based on the technology and culture of the setting.
  • 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

These experiences are of the ableist actions people take based on assumptions and ignorance. As the setting varies, those assumptions may also vary, creating different results. In optimistic settings, these experiences might be gone entirely.



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.



The Vision of a Person with Albinism: This YouTube video has text and images illustrating the ways that albinism impacts vision.



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.”



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.”



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 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.


3 Responses to “Experiences of Disability”

  1. […] Experiences of Disability – A resources at Writing Alchemy where people can share their own stories and experiences for others to learn from. […]

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