During the past decade plus, since the passing of the Americans with Disabilities Act (ADA), a good many improvements and reasonable accommodations have created more and better access for people with physical disabilities, including ramps, elevators, lifts, and electronically powered doors. Those with sensory impairments, i.e. blindness, have also benefited from the availability of alternative format materials such as Braille menus in restaurants, Braille labels in elevators, and audio description services in performance venues. The Deaf community has successfully educated much of the general public concerning the cultural aspects of Deafness, including the confirmation of a person who is Deaf as the President of the country’s leading institution of higher learning for Deaf people, at Gallaudet College. In addition, some individuals with developmental disabilities are getting out of institutional settings and living independently in communities that are learning to welcome their contributions.
Ongoing efforts in the growing Disability Rights movement have also begun to address the dilemma of language – the ways in which we speak not just to, but also about people who are considered disabled. The current trend is towards the use of person first language, whereby those of us historically referred to as “crippled” or “handicapped” are more and more often referred to as persons (or people) with disabilities – sometimes abbreviated as PWDs.
These practices of diversity awareness and accessibility are a good thing. As a person who lives with a disability, I have witnessed a numbers of changes taking place during my twenty-two years as wheelchair user. (I use a manual wheelchair, having survived a spinal cord injury in 1980.) For example, I now see more ramps providing wheelchair accessible entrances to small or mid-size businesses; ten or fifteen years ago only larger retail stores provided access and accommodations. More and more public places have truly wheelchair-friendly restroom facilities, which is a noticeable improvement. And increasing numbers of movie theaters and other performance venues provide seating which offers me options, rather than limiting me to sitting in the back row of the theater. I do notice and appreciate these changes and improvements in the accessibility of the world at large. I now feel more welcomed in public places, and I feel more at ease venturing out into recreational activities, whether a familiar past-time or a new adventure.
Great strides have also been made in the arts and education arenas, as increasing numbers of school classrooms become more inclusive, integrated environments that welcome and challenge children and youth with a wide array of abilities and experiences. Adults with disabilities are seen more frequently out and about in our communities, tending to the daily business of living. Despite these noticeable changes in our environment and communities, I believe a fundamental cultural myth remains largely unchallenged by our society. It is a stereotype that deeply affects the way people with disabilities are perceived in our culture, as well as the way we as teaching artists work with the children, youth and adults we encounter in the educational system.
A Case in Point
Most non-disabled people assume they already know what people with disabilities are and are not capable of, both physically and intellectually. My most memorable encounter to date with this stereotypical assumption occurred in 1990. I attended a theater workshop in London, which was to be taught by a well-known educational theatre professional. Submitting my registration information, I took great care to ensure that both the workshop organizers and the instructor were informed of my disability and my need for wheelchair access. On the day of the workshop, I arrived early and entered the studio. As I was stretching out and warming up, the instructor approached me, introduced himself, and we chatted. I specifically asked if he had any questions or concerns regarding my participation.
“There are no observers in my class,” he replied, “only participants.”
“Cool,” I thought.
Since he did not indicate any concerns or ask me any questions, I was willing to believe that he was comfortable with my presence in his workshop. However, I soon learned that I assumed incorrectly.
Initiating the third or fourth group activity, he told me to, “Stay out of this one – it could get complicated.” I was stunned. I pulled out of the circle. As Mr. Barker made similar remarks repeatedly, Elly, a friend and fellow participant, noticed me withdrawing more and more; she approached me, and volunteered to sit out of any activity I was barred from by the instructor. Moments later, when he noticed that she was not participating, he asked why.
“I’m sitting out of the activities Jaehn is excluded from,” she replied. “Well,” he said, “I’d like you to participate, and I’ll hold her hand if she needs it.”
At this point I chose hastily to leave, with Elly close on my heels … wheels. I felt deeply angry – at Mr. Barker’s flip remark and his lack of sensitivity, and at my own disappointment in him. I had expected to participate to the best of my ability in an extraordinary learning opportunity! Instead I was excluded as a direct result of Mr. Barker’s assumptions about me, and his unwillingness to accept my abilities and potential. He did not ask me about my limitations nor express any concerns about adaptive techniques; he simply assumed that I would not be able to participate in certain activities – perhaps because he himself could not imagine how I might be able to adapt? So – exactly whose limitations prevented me from participating in an experience that might have contributed greatly to my professional development? And looking beyond the direct effect upon me personally, I cannot help but wonder – what did all those other participants learn about “who gets to play”?
Taking the DIS Out of Dis.Ability
Many people have been exposed to more myth and charitable stereotypes than genuine information about people with disabilities – in part because we have been culturally invisible for far too long. However, as physical access and reasonable accommodations become more common practice, increasing numbers of PWDs are becoming more active in the lives of our communities. We are raising families, attending church services, working at paid employment and paying taxes, taking vacations, volunteering in worthy causes - - - and generally getting out and about in the world, in greater and greater numbers. As a result, we are ourselves encountering more and more non-disabled people who still view us in historical terms, based on a traditional medical model which assumes an underlying value judgment about what it means to live in a body labeled disabled – that is, it is oh-so-sad (read “bad & tragic”.).
I am of course referring to the “DIS-“ of disability – a negative prefix referring to the lack ability; this definition infers an assumption that extends to a covert cultural myth that we – People With Disabilities – not only lack skills (abilities), we also lack value as human beings as well. In our culture at large, there is a negative value judgment attached to the fact of living in body deemed “abnormal”. When you live in a body labeled “disabled,” you are defined, albeit covertly in many cases, as other-than-human. It is not something that people do intentionally – it just sort of happens, as the result of a belief system that we have inherited from a succession of previous generations. We – PWDs - have automatically been relegated to a sub-set of humanity, assumed to be - and thus traditionally treated as - lesser beings, by virtue of living in bodies that challenge societal perceptions and definitions of “normal,” not to mention “beautiful”. If we are to grow and evolve as a human community – as a species - I believe it is time to challenge this myth and this stereotype, a stereotype that has been (mistakenly) elevated to the status of Cosmic Truth. It is time to take the DIS out of disability. We need to face our assumptions and prejudices about people who live with disabilities, and take responsibility for the cultural construct of “disability”. It is a notion that limits our willingness to honor and respect the inherent worth and dignity of each individual.
Admittedly, this challenge to cultural mythology is no small task. And I make no claim to having simple solutions to all the challenges we face in working towards access for and full inclusion of individuals with disabilities. However, I do believe there a few basic techniques we can begin to practice that can help us shift our belief systems away from the outdated medical models that limit our ability and willingness to accept each other as fellow human beings.
Tips and Taboos
The following are intended as helpful hints, and are adapted from “Ten Commandments of Etiquette for Communicating with Person with Disabilities,” a resource compiled by the United Cerebral Palsy Association, Inc. Some of these tips may already be familiar to you, and some may offer new ideas to consider.
- Do not make assumptions. If you are unsure about what is physically possible, comfortable or reasonable for a PWD you are working with or teaching, ask!
- When talking with a person with a disability, speak directly to us rather than through a companion or sign language interpreter who may be present.
- If you offer assistance, wait until the offer is accepted; then listen to or ask for instructions, and follow them. Please do not assume that you already know the best way to render assistance.
- Give yourself reasonable, achievable goals in working towards accessibility (physical, programmatic, and attitudinal) and inclusion; no one can achieve full access and inclusion overnight, but a good faith effort is a good start.
- Utilize community resources, such as state councils on disability and independent living centers, as well as teachers and parents of kids with disabilities – and the kids themselves. There are people in your community with detailed, accurate information – seek them out.
- Leaning or hanging on a person’s wheelchair is similar to leaning or hanging on a person’s body, and is generally considered annoying. The wheelchair is part of our personal body space – please respect it as such.
- Make disability/diversity awareness part of classroom culture; engage all of the students in creative problem-solving if need be; perhaps you could offer everyone a chance to try alternative techniques or materials. What happens if everyone paints with their toes?
- Think about the language you use to talk about disability and people who have disabilities. What we say and how we say it eloquently expresses our beliefs and attitudes, our thoughts and feelings. Learn and practice person first language and phrases, and encourage others to do the same. You can be a positive role model for students, teachers, parents, and administrators.
- Do not assume that all people with disabilities have the same needs or abilities. You wouldn’t treat non-disabled people that way, would you? Treat each person as an individual.
- Remember that you are dealing with people. Consider how you would want to be treated if roles were reversed.
Person First Language
“Person First Language” is a relatively simple practice that can make a noticeable difference in how PWDs are perceived and treated. It requires a high level of self-awareness, and conscious choices about how we speak to and about people with disabilities. In considering the relationship between attitudes and language, it is hard to know which is the chicken and which the egg; frankly, I am not certain it really matters. If you change one, the other will also inevitably evolve. You can work on changing your attitude first, and your language will eventually alter to reflect that attitudinal change. Or you can work on changing your language habits, and I think your attitude will alter as you absorb the belief system expressed by the new language. Some examples of Person First Language follow, contrasted with outdated terms with negative connotations:
Person with a disability vs. "The disabled*; handicapped; crippled; suffers from a disability"
Person who is blind or person with a visual impairment vs. "The blind*"
Person who is deaf or hard of hearing** vs. "The deaf; deaf & dumb; suffers a hearing loss"
Person with mental illness vs. "crazy; psycho; lunatic"
Person who uses a wheelchair or Wheelchair user vs. "confined to a wheelchair; wheelchair bound"
These are just a few examples, from Access and Opportunities: A Guide to Disability Awareness, illustrating the difference between value-ridden terms and the current trend towards a more respectful way of speaking to and about PWDs.
* The habit of using a descriptive adjective as a noun is one of my pet peeves; we are not The Disabled, we are people with disabilities. When terms like "The Disabled" or "The Blind" are used, the speaker or writer reduces us to the fact of our disability. Imagine how it would feel if you were summed up by being labeled for one physical characteristic that you cannot change, like "The Big-Footed," or "The Brown-Eyed".
** Some people have used the phrase “hearing impaired” or “hearing impairment”. I have asked people who are Deaf, and they tell me that “hard of hearing” is currently preferred over “hearing impaired”.
This issue of politically correct language is a difficult one, for a variety of reasons, including the personal preferences of different individuals, and the fact that language is a living phenomenon that changes and evolves as human culture does. The important thing to remember is that the fundamental philosophy of person first language is to place the focus on the human individual, rather than the disability. After all, I am a person who happens to have a disability – not a disability that happens to be a person.
Can Do Attitude
One other simple attitudinal adjustment could also generate new beliefs and attitudes about PWDs. Take the focus off what I cannot do as a result of my paraplegia – Jaehn CAN’T walk – and focus instead on what I CAN do: Jaehn can talk, think, feel, imagine, laugh, cry, hope, dream, eat strawberries, swim, savor the sensation of the wind on her skin, etc. How might we relate differently to the kids we teach – those with and without disabilities - if we were to focus on, highlight, celebrate and foster their ABILITIES, rather than desperately trying to compensate for their supposed DIS-abilities? I am not suggesting we ignore the need for skills development, or that we pretend children with disabilities do not have limitations. All children – all people – have limitations. But - what would happen if we gave up thinking, “Well, Bob can’t move his arms, so he can’t do that art lesson - he can’t paint.” Can Bob move his head; hold a paintbrush in his mouth, or in his toes? What part of his body can he move? How can you facilitate Bob painting in his own unique way?
I recently attended a conference, offering information about techniques and programs designed to infuse arts activities into classroom curriculum. During a session about story theatre for the classroom, an experienced and well-intentioned teaching artist leading the session gave an instruction for all of the participants to “stand up in front of your chairs.” She looked at me, realizing that I was not going to follow that direction. Moments later we were instructed to “walk around the room.” I immediately felt completely left out; intellectually I knew it was not her intention to exclude me, but the emotional impact it had upon me was immediate and irreversible. My understanding that she simply lacks awareness did not erase this emotional impact; I still felt left out. A minor adjustment in her language could have successfully included me - - - “Now, everyone move around the room.” I cannot walk around the room, but I can move around the room. This is not a huge adjustment for a teaching artist to make, but it can make a world of difference for a child with a disability who may already feel self-conscious about their physical differences. And I believe it is part of our job as teaching artists to develop this awareness and sensitivity to our students, and to help create environments that foster their full inclusion in classroom culture, as well as their learning in the arts.
How might we grow as people – as artists and teachers - if we allowed ourselves to learn from the creative problem-solving experiences that kids with disabilities have garnered from their daily lives adapting to a world that does not always welcome them into the fold? Who can say which of us, properly encouraged and supported to reach our fullest potential, will become an artistic genius, a scientific innovator, or an effective political leader? Is the world - and human society in general - in such great shape that we can afford to disregard and toss away individuals just because their physical presence challenges our own fears of physical “imperfection” and mortality?
Annie’s Tale
I recently read a tale, circulated via Email, that reminded me how important it is not to make assumptions about the capabilities and potential of persons with disabilities.
Dr. Frank Mayfield was touring Tewksbury Institute when he accidentally collided with an elderly floor maid. To cover the awkward moment he asked, "How long have you worked here?"
The maid replied, "I've worked here almost since the place opened.”
"What can you tell me about the history of this place?" Dr. Mayfield asked.
"I don't think I can tell you anything, but I could show you something."
The maid took his hand and led him down to the basement under the oldest section of the building. She pointed at what looked like a small prison cell, iron bars rusted with age, explaining, "That's the cage where they used to keep Annie."
"Who's Annie?" the doctor asked.
"Annie was a young girl who was brought here because she was incorrigible - nobody could do anything with her. She'd bite and scream and throw food at people. The doctors and nurses couldn't even examine her, with her spitting and scratching at them. I was only a few years younger than her myself and I used to think, 'I sure would hate to be locked up in a cage like that.' I wanted to help her, but I didn't know what I could do. I mean, if the doctors and nurses couldn't help her, what could someone like me do? I didn't know what else to do, so I just baked her some brownies one night after work. The next day I brought them in. I walked carefully to her cage and said, 'Annie, I baked these brownies just for you. I'll put them right here on the floor, and you can come and get them if you want.' Then I got out of there just as fast as I could, because I was afraid she might throw them at me. But she didn't. She actually took the brownies and ate them. After that, she was just a little bit nicer to me. And sometimes I'd talk to her. Once, I even got her laughing. One of the nurses noticed this and she told the doctor. They asked if I'd help them with Annie; I said I would if I could. So, every time they wanted to examine her, I went into the cage first, and calmed her down and held her hand. That’s how they discovered that Annie was almost blind. After they'd been working with her for about a year, the Perkins Institute for the Blind opened its doors. They were able to help her, and she went on to study and became a teacher herself.“
Annie later returned to the Tewksbury Institute, to visit and to find out if she could help in any way. The Director thought about a letter he'd just received. A man had written to him about his daughter, who was absolutely unruly - almost like an animal. The child was described as blind and deaf as well as 'deranged.' Her father was at his wit's end, but he didn't want to put her in an asylum. So he wrote to the director asking about anyone who would come to his house and work with his daughter. And that is how Annie Sullivan became the lifelong companion of Helen Keller.
When Helen Keller received the Nobel Prize, she was asked who had the greatest impact on her life and she replied, "Annie Sullivan." But Annie said, "No, Helen. The woman who had the greatest influence on both our lives was a floor maid at the Tewksbury Institute." History – and the world - is changed when one person asks, "What can someone like me do"?
Part of the Solution
I believe one of the reasons our culture tries – almost desperately, it seems - to relegate PWDs to second-class citizenship is fear and denial of our own individual, personal mortality. It’s the old “There but for the grace of God go I” syndrome.
“You’re so brave / courageous / inspirational.” Read: living with a disability takes something more than surviving the world as a “normal” person.
“Oh, I just don’t think I could live like that!” Read: Thank god I’m not a cripple (sic!), too!
Well, guess what people – if you live long enough, you will acquire a so-called disability. We – people with disabilities - are the only minority group that does not discriminate; anyone can join the ranks of “The Disabled” (sic). It might happen gradually, as you age and experience the inevitable physical changes that come with the passage of time. Changes occur in vision, hearing, physical stamina, flexibility, strength; changes in olfactory and tactile acuity, a slowing of physical reflexes, or a decline of fine-motor skills may also occur. If you live long enough to become an elder, you will probably experience some of these transformations. Or, your status as a non-disabled person could alter in the blink of an eye; you could survive a traumatic injury of some sort, one that forever alters how you live in your body. Civil rights for people with disabilities was not something I ever thought about when I was growing up. However, after I fell twenty-seven feet off the top of ladder, landed on my butt, and sustained a T-12 incomplete compression fracture, disability rights became both a personal and a professional issue for me. And it seems that it is personal experience with disability that changes us – our awareness and our beliefs.
You probably already know someone who lives with a disability – even though you may not be aware of it. One of your relatives, friends, or co-workers may live with some type of physical, emotional or cognitive disability. There are a myriad of “disabilities” and not all of them are physical or visible. Do you know someone who lives with clinical depression? That is defined by the ADA as a disability – and it is the fastest growing segment of the disabled population in the country. The statistics from the 2000 census indicate that 1 in 5 people live with a disability of one sort or another – that is 20% of the U.S. population. There are more of us than you may think!
Are you willing to challenge your own stereotypes and assumptions about people with disabilities? Are you willing to be part of the solution and to work towards physical as well as attitudinal access? Will you educate yourself and others, and encourage – even demand if necessary - inclusion of people with disabilities in all facets of our human culture and community? What sort of world do you want to live in when you do become “one of us”? Remember, if you are not part of the solution, you are by default part of the problem. There really is a way to change the world – and it is one person at a time.
