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Disability Experiences

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.

 

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

How to Write Disabled Characters: This new series contains “interviews with chronically ill and disabled people on how to write characters with their conditions.”

 

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.”

 

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.

 

Autism

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.”

 

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…

 

Sensory Processing Disorder

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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