Disability And Representation: A Community Perspective

Introduction 

There has been a lot of discussion in the disability community over the past few years about terminology, representation, and identity, led by both grassroots organizations and individual advocates. Perhaps because of this duality, one of the things that those who have not yet regularly interacted with people with disabilities are most concerned about is how they talk about disability and identity. Organizations are also struggling with corporate policy around communication and marketing to, about, and with the disability community.  

To usefully contribute to this on-going conversation, Fable surveyed our community of assistive technology users to collect their sentiments and thoughts on this important topic.

This article will present some of the insights from the quantitative and qualitative data gathered, in hopes that it will help you and your organization refine your thoughts and efforts in disability inclusion.

A Latinx disabled woman and an Asian disabled genderfluid person chat and sit on a couch, both holding coffee mugs. An electric lightweight mobility scooter rests on the side.

Photo Credit: Disabled and Here

An important note

These topics are still matters of on-going discussion, and not every person will feel the same way about them.  Just like any other group, people with disabilities are not a monolith, and different people will have different (equally valid) opinions on these subjects.

In this edition of Fable Insights, we aim to present an overview of the thoughts and feelings of our community, to help you refine your overall thinking on this topic. The data presented here should never override the preferences of any individual person with a disability. If you are a person with a disability yourself, we want you to know that you and your opinions and preferences matter, and deserve to be heard and respected, whether they are reflected in this article or not.

Disability Identity

“I don’t want my disability to identify me. I want to be known as a person first, who just happens to have a disability. My disability is just a very small part of who I am.” – Darrin R

“I don’t think I should have to remind anyone that I’m a person. We don’t say things like “person with a height advantage,” we just say, “they’re a tall person.” The [LGBTQ*] community says things like, “I’m gay” or “I’m queer.” When talking about race, we don’t say “person with X heritage.” Person-first language is extremely segregating and implies that disability is something to shy away from. It has negative connotation. I think identity-first language is the easiest way to shift perspective on disability, since there is no other group that uses person-first.” – E J

“As long as the language is respectful, I don’t care which way it is phrased.” – Marcia Y

The way people with disabilities are represented, and how they represent themselves, is intricately tied to the way we use language to talk about disability identity.

At Fable, we currently use person-first language when referring to people. This means that we prefer “person with a disability”, or “a person who is blind”. We made this decision to highlight the fact that everyone is a person first, and people are not entirely defined by disability. The alternative is known as “identity-first language” and prefers phrases like “a disabled person” or “a blind person”. While we made this choice after much intentional thought and discussion, we wanted to survey the community, and find out how they felt about the matter.

We found that, just as people change the way they represent themselves based on the situation, 39 percent of people with disabilities say that their preference for person- or identity-first language changes based on the circumstances. When people do have a strong preference, 49 percent of our community prefers person-first language, while only 11 percent prefers identity-first language.

A chart showing that a majority of participants prefer person first language, a secondary number say it depends on the circumstance, and a minority prefer identity first.

Disability Culture

“In my opinion, capitalizing the first letter of a disability description is a backwards step. It makes a bigger deal out of the disability and possibly could put us on an unnecessary pedestal that idealizes people with disabilities and heightens the stereotype that we have some kind of superpower. I can see the capital letter expressing one’s pride for having said disability and it possibly having a part in shaping them as a person, but personally, I’m neither proud nor ashamed of my disability. It’s just one of the things that makes me human.” – Grace A

“I think capitalization of a disability emphasizes that disability as a part of a person’s identity. It also may give a person either a sense of pride or help them better accept their disability.” – Douglas L

There is a growing belief that because we have a unique identity, people with disabilities often develop a unique culture that should be recognized and valued. Some people feel that because disability identity is not defined along ethnic lines, the cultures and customs created by communities of people with disabilities go unrecognized, and people do not develop pride in their identity.

To recognize this, there has been a movement in recent years, that began in the Deaf community, to begin capitalizing the first letter of disability related terms.

When we asked Fable’s community about this, we found that it has yet to catch on. Only 8 percent of people always capitalize the term for their disability, 34 percent sometimes do, and 57 percent never do. The primary reasons for leaving these terms lower-case included not wanting to make a big deal of disability and not feeling like part of a community. Those who do capitalize the term generally do so to show pride, because they believe disability and ethnicity should be equally respected, or to highlight this aspect of themselves.

There is a movement, beginning in the Deaf community, to capitalize the first letter of disability related identities (Example: Blind, Deaf). When writing about your disability, do you capitalize ... always capitalize is low, never capitalize is the highest, and sometimes capitalize is in the middle for respondents..

Disability-related Phrases 

 “I think that sometimes we live in a cancel culture that is too politically sensitive. It makes people too afraid to say the wrong thing or approach persons with disabilities. There is such a thing as being too politically correct. I personally want people to feel comfortable interacting with and discussing the topic of disability.” – Elizabeth N 

“This is actually a bit annoying, but I believe in freedom of speech. I am uncomfortable with the song Amazing Grace, for example, but everyone has the right to sing it as they choose. Yes, I believe that it solidifies the negative associations, but   censuring speech that is not intentionally harmful or hateful is an even larger problem.” – Jan A 

There are many phrases in the English language that make use of disability related terms as metaphor or analogy. Recently, these phrases have become controversial in some circles; notably, the popular gaming website Twitch recently received highly mixed feedback after it banned the term “blind playthrough” when used to mean someone who is playing a game for the first time. But these controversies regularly lack input from people with disabilities themselves. 

When we surveyed the community, 81 percent of our respondents had no problem with these phrases, while 18 percent wished people would stop using terms and phrases like this.  

People who dislike these phrases said no individual has the right to restrict the freedom of speech of others, that changing the way we use language is too difficult, and that they don’t have the time or energy to advocate for this given higher priority issues. Those who have no problem with these phrases fear that restricting them may make people afraid to interact with people with disabilities, that trying to get rid of them may promote the idea that disability is shameful and believe that people with disabilities don’t have ownership of the terms used to refer to their condition.  

How do you feel about phrases that use words related to your disability as analogies, figures of speech, or metaphors? For example: love is blind. 50 people say this isn't a problem and just over 10 say they wish people would stop using these phrases.