READINGS
in Independent Living

Challenging Everyone’s Assumptions: The Petbia Chart

2002
by Steven Brown

In the summer of 2001, when Lillian Gonzales Brown and I traveled to Montana to collaborate with the folks at the Rural Institute on Disabilities at the University of Montana in Missoula, I engaged in several intense discussions with Health Projects Director Craig Ravesloot. It became clear that he loves a challenge, and he instigated one about the controversial term of “disability.”

Craig wrestled with what “disability” meant and who was included or excluded by the term in a facility he managed (See New Directions in Living Well). He got me thinking one day when he suggested we eliminate the term “disability” and substitute for it the intersection of public access and health and see who would and would not benefit.

Never having liked the term “disability” much myself but not seeing an alternative to it, I began to wonder if Craig had hit upon something I could use. I kept turning these phrases about and playing with them. Maybe I should state some of what bothers me about the term itself.

I came of age in the disability rights movement just at a time when people were beginning to question the merit of the term “handicap,” which itself had been entertained as a more progressive term than “crippled.” The best aspect of the term “disability” was that activists with disabilities were the ones using and promoting it.

The worst aspect, to me, unlike many of my colleagues, was the belief that a disability came from within and a handicap was from without. So many people ascribed handicappism to the environment that I felt they forgot about people with chronic pain, intellectual and cognitive disabilities, and many other disabilities that are impacted from within as well as without. Ramping a building, for example, may mean I can get my wheelchair inside, but it doesn’t mean that when I wake up that morning my pain level will be low enough that I will want to go to that building.

People all over the world tried to make distinctions between “handicap,” “disability” and “environment” that I just didn’t find convincing. Then the final straw came for me a few months ago. In the rash of Web sites that have followed the Internet boom, we had the Web site halftheplanet and many others saying that people with disabilities, their families and allies make up half the population of any given demographic group. David Pfeiffer, a resident scholar in the Center on Disability Studies at the University of Hawaii at Manoa and past-president of the Society for Disability Studies, contends even this figure is low.

Let’s say though that 50% of us have disabilities, families and friends who are allies. We chose “disability” partly because it was a term that showed political leverage. We are the disability rights movement. But if so many of us qualify to be labeled “disabled,” then why aren’t more of us taking advantage of the label?

What does calling ourselves “disabled” get us? Money, power, prestige? There are certainly billions of dollars going into the disability industry. And some people with disabilities are getting some of it. But study after study shows that most of us are not.

Power is a different kind of animal, not as easily definable. For example, when I ran an independent living center several people called me an empire-builder. I must not have been a particularly good one because I left just as the empire was becoming stable. But there are other center directors who could certainly fit this label. They do have some power. But it’s pretty limited when compared with people like Bill Gates, Whoopi Goldberg or Christopher Reeve.

Even our most powerful leaders by consensus are pretty puny. Judy Heumann made it as far as Assistant Secretary of the Department of Education for eight years. But how many people know what she’s doing now? And even worse, how many people outside of the disability rights movement knew what she was doing while at the Department of Education, or before that at the World Institute on Disability, or before that at the Center for Independent Living in Berkeley, or before that at Disabled in Action in New York?

Marca Bristo and Lex Frieden have both chaired the National Council on Disability. Both have power and influence. But how many people outside of the disability community know who they are and what they have done?

Justin Dart has probably become our most respected elder states-person. But without being born independently wealthy and as committed as he is rich, where would he be? Would he have been able to defy the Secretary of Education when he was Rehabilitation Services Administration Commissioner? Would he have been able to travel to all 50 states to collect discrimination diaries and promote the passage of the Americans with Disabilities Act?

The most powerful person with a disability in this country? I’d have to say it’s someone like Magic Johnson, who isn’t known particularly for his disability. And still maybe the most influential person about disability is that paragon of evil Jerry Lewis, who if he is disabled comes by it like lots of people who don’t identify with the disability rights movement, by living long enough to acquire some kind of disability.

The point is that for most of us, whatever power we have obtained from our disabilities and the disability rights movement is minimal compared to other powerful rights leaders, for example Jesse Jackson or Gloria Steinem or Ralph Nader.

The prestige of disability seems almost too ridiculous to even discuss. If it were so prestigious, then all those millions of people who fit into the halftheplanet scheme would self- identify as disabled and identify with the disability culture, but they don’t.

The stark reality is that while the term “disability” has been a useful tool in developing and promoting the disability rights movement, we all know that we still fall far short of our goals of equal opportunity or integration into mainstream society. And there are still lots of people in the world who believe that everyone is “disabled” in some way. And the truth is they’re probably right. Not everyone is excluded from a job or a school or a bus or an apartment because of this “everyone is ‘disabled’ in some way” concept, but what would happen to our own perceptions of disability if we were to expand our thinking to include this concept?

After my conversations with Craig, I realized that I sought a way to include people with disabilities being evaluated the same way anyone else would want his or her life measured. I think I may have come up with such a way. I’ll call it the PETBIA Chart because I’m looking at Public Expectations, Traditional Beliefs, and Individual Abilities.

In developing the chart, I looked at Web sites that detailed different activities of daily living, in other words, specific tasks that most people believe people with disabilities need some kind of assistance or adaptation to do well or at all. I call those daily living tasks Public Expectations. When I first wrote the chart I included personal assistance, but I have eliminated that because every single social one of us uses other people in some way, whether it be to have someone else haul away our garbage or harvest our food or do our dishes or file our IRS returns. All of us have personal assistance of some sort; most of us just don’t call it that. So here for contemplation, reflection, and adaptation is the PETBIA Chart.

PETBIA CHART in text format

I brook no claim that the chart is completely accurate or comprehensive. The point is that over the years we have developed expectations of ways in which something would be accomplished and have then gotten stuck in believing those are the only ways to do certain tasks. I am calling those patterns Traditional Beliefs. I am reminded of a friend who can do just about anything he chooses. But for the past several years he has been without a vehicle because of financial constraints. He has fixed many things in our house during this time, and we have both given him rides and loaned him our vehicle for his use. If anyone looked at the three of us--my friend, my wife and I--on the street, they would conclude, using Traditional Beliefs, that of the three of us my friend would be the one most likely to drive and therefore to own a vehicle. But as our own individual lives have evolved over the past several years, it has turned out to be exactly the opposite. I’m calling those kinds of developments “Individual Abilities.”

I think the biggest problem I have with the term “disability” is that we of the disability rights movement have come to accept our own Traditional Beliefs that there are only certain ways we can accomplish our own goals, for example, using personal assistants to get out of bed. I had a friend a long time ago who regularly called the fire department to get her out of jams if her husband was gone or she could find no one else. I used to think that was a ridiculous waste of taxpayer money. And maybe it was. But the bottom line for her was she found a way to get her needs met that most of us wouldn’t even consider.

How might the PETBIA Chart be of any use? All those lists of “activities of daily living” (ADL) that make up the Public Expectations column of the PETBIA Chart are usually designed to see what someone can’t do and then figure out how they might do it by using the patterns of Traditional Beliefs. What if we threw out those expectations and asked instead if these activities are being accomplished how someone does it.

Maybe the Individual Abilities they’ve developed over the years have incorporated a much better way of completing those activities than someone else would contemplate. Does it matter how they’re done or that they’re done? If people using those ADL lists would ask this question instead of can someone do something in a traditional way, I think we’d all be better off. And I think the PETBIA Chart would have served a noble purpose.

There’s another use for the PETBIA Chart and it’s about us, not others. Just as we historically have been caught up in negative images of disability because we are part of this society too, we have also been caught up in Traditional Beliefs about Public Expectations.

Many of us have developed our own ways, or Individual Abilities, of doing tasks, but because we have been acculturated to think those Traditional Beliefs are “the right way,” we don’t share what we know.

One more example. For many years, Fred Fay ran the advocacy network Justice for All. This network alerted people to legislative concerns, helped sponsor advocacy activities and networked people from all over the world. Fred managed this network from his bed because his disability keeps him there.

He could do this because of his own abilities and because of his access to appropriate technologies that enabled him to put together this advocacy network without leaving his bed.

There are literally thousands, if not millions, of people around the world who stay in their beds every day but do nothing like what Fred did. Why? In some cases because they don’t have access to technology, but in most cases because of the limitations of their own thinking and that of their families and friends. Their Traditional Beliefs say that if someone is in bed all day, then they are invalids or invalidated. Fred disproved that theory, but how many people know about his successes or would believe it possible for themselves even if they did hear it?

The point of the PETBIA Chart is to break all of us out of our own assumptions about disability and limitation. Maybe then it won’t matter what we call each other, just what we can do with one another.

Contact Information

RTC: Rural The University of Montana Rural Institute: A Center of Excellence for Developmental Disabilities Education, Research and Services
52 Corbin Hall
Missoula, MT 59812-7056
(888) 268-2743 or (406) 243-5467 V/TTY or (406) 243-2349 fax
gargoyle@selway.umt.edu
http://ruralinstitute.umt.edu/rtcrural.

Steven Brown
Institute on Disability Culture
Center on Disability Studies
University of Hawai'i
1776 University Ave., UA4-6
Honolulu, HI 96822
SBrown8912@aol.com
http://hometown.aol.com/sbrown8912/

About the Author

Steven E. Brown is currently a Resident Scholar at the Center on Disability Studies, University of Hawaii at Manoa. Brown, founder, Institute on Disability Culture (IDC), earned a doctorate in history from the University of Oklahoma. He directed an independent living center in Oklahoma, organized numerous community coalitions, and served as training director at the World Institute on Disability Research and Training Center on Public Policy in Independent Living. He founded the not-for-profit Institute on Disability Culture with his wife, Lillian Gonzales Brown, in 1994. Since then he has become an internationally sought speaker, trainer, and writer.

Brown's publications include dozens of articles and the books Independent Living: Theory and Practice, which has been translated into several languages; Investigating a Culture of Disability: Final Report, the result of a prestigious Switzer Fellowship from the National Institute on Disability Rehabilitation and Research of the Department of Education, the first funding of its type for research into the field of Disability Culture; A Celebration of Diversity: an Annotated Bibliography about Disability Culture, Second Edition; and Celebrating Passion, Relentlessness, and Vision: the Manifesto Editorials. An award-winning poet, Brown has published five books of poetry, Dragonflies in Paradise: An Activist's Partial Poetic Autobiography; The Goddess Approaches Fifty: Poems; Love into Forever: a Tribute to Martyrs, Heroes, Friends, and Colleagues; Pain, Plain--and Fancy Rappings: Poetry from the Disability Culture; and Voyages: Life Journeys.

In recent years, Brown has conducted writing workshops and residencies with groups of all ages, especially with middle and elementary school students. He has written a children's biography about disability rights pioneer Ed Roberts, distributed a monthly online newsletter and continued to publish articles about disability culture and disability rights in a variety of publications. He has conducted trainings throughout the United States and Europe on a variety of disability related subjects.

This document may be reproduced for noncommercial use without prior permission if the author and ILRU are cited.

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