First, let's look at the reasons that some people are uncomfortable with people with disabilities. One reason is that some people feel sorry for people with disabilities, and assume that they are bitter about their disabilities. This is untrue in many cases. Lots of people with disabilities feel that their lives are enriched by their experiences with disability, and even if given the chance to erase their disability would choose not to.
In an interview on Larry King Live, some people said of their disabilities:Another reason that some people are uncomfortable around people with disabilities is that they're afraid that they will "say the wrong thing". However, that's not a big deal to most people with disabilities. What's important is that you respect the person and see them beyond their disability.
"I wouldn't change it. I wouldn't change it if I had the opportunity. There's no way."
"It's definitely been a different path through life than I thought I'd take, but it's been a great one and you know, we've said it a few times we wouldn't, I wouldn't change anything." [1]
In the movie "I am Sam", the main character, Sam, is an adult with a developmental disability. An initially insensitive attorney says to Sam:One basic question many people have is: What is appropriate terminology, for example, disability, impairment, or handicap? When you're working with someone, you can ask what terminology he or she prefers. When you're speaking in public or writing, you'll need to do a little research to ensure that you use widely-accepted terminology and avoid potentially offensive terminology. There are some guidelines later in this chapter.
"I need that list of names from you—people who can testify that you're a good father despite your handicap. I didn't mean your handicap, I meant your disability. [shakes her head] The fact that you're retarded. That's not the right word. [exasperated] I don't know what to call you!"
To which he replies: "Sam. You can call me Sam." [2]
The most important thing to know when interacting with people with disabilities is that they are people. And just like all people, they are very different, including being different in how they are with disability issues.
Some people prefer different terms, some get very upset about terminology, and some don't care. Some people get very upset about accessibility barriers and lash out at those responsible; some are very patient with accessibility barriers and are appreciative and supportive of people and organizations that are trying to fix barriers.
Some people really appreciate the opportunity to talk about their disability and educate people about accessibility issues, and others don't like to talk about it at all. After you know someone a little, you might ask, "I'm curious about your using a wheelchair. Are you comfortable talking about it, or would you prefer not to?"
Once I got to know a couple of people with disabilities personally, all sorts of incorrect assumptions and false stereotypes cleared up.If you have people with disabilities regularly helping you understand accessibility issues and test prototypes, as recommended in Involving People with Disabilities in Your Project, consider getting to know them personally, as you are both comfortable. For example, talk over lunch and find things that you have in common, such as children the same age, hobbies, or TV shows you like.
We recruited Jim, who is blind, to help test our products with screen readers. After working together one afternoon, a few of us went to the pub and had a grand time. Getting to know each other better has made our work more productive and fun. (And now we schedule Jim's work in the afternoon when possible.)The rest of this chapter provides specific guidance on interacting with people with disabilities.
Don't make assumptions about people or their disabilities. Don't assume you know what someone wants, what he feels, or what is best for him. If you have a question about what to do, how to do it, what language or terminology to use, or what assistance to offer, ask him. That person should be your first and best resource. [3]
Remember that people with disabilities have different preferences. Just because one person with a disability prefers something one way doesn't mean that another person with the same disability also prefers it that way.
Ask before you help. Before you help someone, ask if she would like help. In some cases a person with a disability might seem to be struggling, yet she is fine and would prefer to complete the task on her own. Follow the person's cues and ask if you are not sure what to do. Don't be offended if someone declines your offer of assistance.
A colleague of mine uses a manual wheelchair. Going up some slopes, he looks like he's having a really hard time. However, he's just fine and doesn't want help.Talk directly to the user, not to the interpreter, attendant, or friend. You don't need to ignore the others entirely; just make sure to focus your interaction with the user. When a user who is deaf has an interpreter, the user will look at the interpreter as you are talking. It might take a little extra effort to remember to face the user rather than the interpreter.
If you will be speaking for some time with a person in a wheelchair, sit down so that you are at eye level with her so she doesn't have to strain her neck to look up at you.
Speak normally. Some people have a tendency to talk louder and slower to people with disabilities; don't. Don't assume that because a person has one disability, that he also has a cognitive disability or is hard of hearing. For example, a person with cerebral palsy might use a wheelchair, have uncontrolled upper body movements, have difficulty speaking, and yet have very good hearing, cognitive abilities, and intelligence.
Use normal language including "see" and "look." It's fine to use common phrases such as, "Do you see what I mean?" even to people who are blind. People who are blind often make comments such as, "I can't find what I'm looking for," and "I don't see it on this [web] page."
Use "people-first" language when referring to people with disabilities. People-first language means put the person first and the disability second. For example, say "a man who is blind" rather than "a blind man," and "a woman who uses a wheelchair" instead of "a wheelchair-bound woman." Use people-first language when speaking with people with disabilities, and when speaking and writing about people with disabilities.
Avoid potentially offensive terms or euphemisms. Commonly accepted terminology includes "people with disabilities" and "a person with a visual/hearing/physical/speech/cognitive impairment." Many people find annoying or offensive: restricted to a wheelchair, victim of, suffers from, retarded, deformed, crippled, and euphemisms such as physically challenged. If you are unsure, ask the person with a disability what terminology he prefers.
Once while I was reading our consent form aloud, after hearing "visually impaired" several times, a participant said: I'm blind. I know I'm blind. Just say "blind."Note that accepted terminology is different in different regions. For example, in Europe "handicapped" is an accepted term, whereas many in the U.S. don't like it. "Cognitive disabilities" are also called "intellectual disabilities". To find out about terminology in your area, contact a local disability association.
Larry King asked that same group of people with disabilities about terminology.Side note: It bothers me a bit when people use "mobility impairment" as a disability classification when talking about computer use. Mobility refers to walking and doesn't impact most computer use. Instead, use "physical" or "motor" disabilities, which do impact computer use.
King: Do you use the word "handicapped"?
Rugby player: No, I hate that word.
King: All of you hate it?
[others nod in agreement] [1]
Be aware of personal space. Some people who use a mobility aid, such as a wheelchair, walker, or cane, see these aids as part of their personal space. Don't touch, move, or lean on mobility aids. This is also important for safety.
This concludes Part I. Now you know the basics of including people with disabilities in your projects and interacting with people with disabilities. Part II provides details on integrating accessibility throughout design processes. While it is focused for usability professionals doing User-Centered Design (UCD), most of it can be applied by anyone to other design methodologies. For those who don't know much about user-centered design practices or accessibility, it starts with a little background.
References
1. "Quadriplegics & 'Murderball'." CNN Larry King Live. August 3, 2005. (Transcript) Murderball is a movie about quadriplegic rugby players. The Larry King interview is at the end of the Murderball DVD.
2. Murderball. Dir. Henry Alex Rubin and Dana Adam Shapiro. MTV Films, ThinkFilm, 1More Film, 2005.
3. I am Sam. Dir. Jessie Nelson. New Line Cinema, 2001.
Guide to Etiquette and Behavior for Relating to Persons With Disabilities. American Friends Service Committee.
Document Information
Excerpt from Just Ask: Integrating Accessibility Throughout Design by Shawn Lawton Henry.
Copyright © 2003-2007 Shawn Lawton Henry, All Rights Reserved.