Gary E. May is an Associate Professor of Social Work in the Graduate Program at the University of Southern Indiana. He teaches in the Social Welfare Policy and Clinical sequences. His background includes research and teaching in the areas of Social Welfare Policy, Disability Issues, Veterans' Affairs, and Post Traumatic Stress Disorders. The textbook he co-edited, Ending Disability Discrimination: Strategies for Social Workers, was published in 2005. Professor May is chair of Veterans Defending the Bill of Rights in opposition to a Constitutional amendment prohibiting flag desecration. In 1999 and 2004, he testified before the U.S. Senate Committee on the Judiciary. In May 2003 he testified in opposition before the Subcommittee on the Constitution of the U.S. House Committee on the Judiciary. In addition to his 31 years of clinical experience, Professor May is a former Director of the Indiana Department of Veterans Affairs, and the Indiana Office of Vocational Rehabilitation. He also served as the Director of Outpatient Services for Charter Hospital of Indianapolis. He has conducted workshops and provided consultation services for government, business, and professional organizations. His dynamic, informed presentations have garnered high praise from participants and sponsoring organizations. Professor May earned his Bachelor of Arts Degree in Sociology from the University of Evansville. He holds a Master of Science Degree in Social Work from the University of Tennessee. His professional career began with the Veterans Administration, where he was intensively involved with the development of the Readjustment Counseling Services Program for Vietnam veterans (Vet Centers). Later, he was a private practitioner in Evansville, IN and taught as an Adjunct Professor in the Social Work Department at the University of Southern Indiana. In 1989, Governor Evan Bayh selected May to head the State's Veterans Affairs Department. This was followed by a gubernatorial appointment to lead the Office of Vocational Rehabilitation. Professor May maintains a limited private clinical practice and conducts home studies for families pursuing international adoptions. He is actively involved in several professional organizations and learned societies. He recently completed a 4 year term as the founding President of the National Alliance of Veteran Family Service Organizations. Previously, he was a member of the court appointed national advisory group for the Agent Orange Class Action litigation settlement. Professor May is a Vietnam combat veteran who was injured by a landmine explosion while serving as an infantryman with the Marines in 1968. In 2005, May was awarded the Rev. W.R. Brown, Sr. Peace and Justice award and the Zion United Church of Christ Peace and Justice Award.

End Disability Discrimination     - Community

by Gary May

Background

Approximately 54 million Americans have a disability according to the U.S. Census Bureau’s 1996 data. This represents approximately 20% of the U.S. population. As people age, they face a risk for adventitious disability that is roughly proportional to their ageing. For example, by age 85, 84% of Americans have at least one disability.

In a 1998 survey of U.S. households commissioned by the National Organization on Disability (NOD) conducted by Harris and Associates, the pattern and magnitude of poor quality of life indicators was again substantiated. This survey has been conducted periodically over the past several years. In the 1998 survey, the unemployment rate among persons with disabilities was 61%. Secondary students with disabilities were twice as likely to drop out of high school as students without disabilities. Furthermore, the NOD/Harris survey found that persons with disabilities were 1/3 less likely to socialize with friends, less than ½ as likely to go to a restaurant at least one time weekly, significantly less likely to be registered to vote when compared with persons with no disabilities. Households with a disabled member had a 33% higher exposure to poverty than non-disabled households. One third of respondents said that transportation was a major problem in their lives. Finally, persons with disabilities were significantly less likely to report being satisfied with their lives when compared with their non-disabled peers.

This abysmal state of affairs persists, substantial expenditures of money and effort directed toward “helping” persons with disabilities notwithstanding. When asked, most respondents report a very favorable attitude toward persons with disabilities. Public discourse that seems to reflect this overall favorable attitude seems to betray powerful, insidious limiting and pejorative attitudes toward this population however. There seem to be powerful forces that largely go unchallenged that perpetuate second class citizenship for persons with disabilities.

Assumptions That Support the Status Quo

In their 2000 article, “Disability Beyond Stigma: Social Interaction and Activism”, Fine and Asch assert that 5 pervasive assumptions conspire to perpetuate ongoing marginalization of people with disabilities. The first of these is the assumption that disability (and disability-related impairment) is located solely in biology, and is therefore immutable. A second assumption is that when a disabled person faces problems, it is the impairment (disability) that causes them. Third, it is assumed that the disabled person is a “victim”. Fourth, disability is thought to be central to the disabled person’s self-concept, self-definition, social comparison, and reference groups. Finally, it is assumed that disability is synonymous with needing help and social support.

These assumptions provide a durable framework and suggest a familiar perspective for understanding persons with disabilities—all without the holder of such assumptions having to identify or claim any animus toward persons with disabilities. The assumptions, if unchallenged, help to “explain” and “understand” the experience of disability. In effect, the assumptions provide all the necessary answers. They also direct behavior.

If the assumption that disability and impairment are immutably linked is accepted, then why look any further than individual mitigation to reduce impairment? If all problems are viewed as consequences of the disability, why focus interventions beyond the owner of the disability? Because of the rather sympathetic orientation toward victims, and an expectation for their engagement as passive recipients of the helpful beneficence of others, we tend to have low expectations. Furthermore, if a disabled person has the audacity to express dissatisfaction with the well intentioned, but misguided “helpful” assistance of others, they are deemed overly demanding, unappreciative and the ultimate defense proffered by Samaritans is, “I was only trying to help”. Good intentions are expected to trump ineffectiveness, a condition I’ve previously referred to as “beneficent incompetence”.

The power and pervasiveness of these assumptions and the predictability of behavior they drive is found broadly in popular culture. Most notably, the assumptions shape and predict the discourse about disability in America.

The Inspiration Quotient

An example from the June 22, 2004 edition of the Evansville Courier and Press serves to illustrate the circular, pejorative, limiting, stereotypic views about persons with disabilities. The article—a full front page story with predictable color photographs—concerned a 22 year old man who uses a wheelchair. The photos and text depicted this young man engaging in activities that most of us would consider being rather routine, and certainly unremarkable. Activities such as greeting worshipers at church, bowling, visiting with benefactors (folks who had “befriended” this young man through their involvement in the community integration program in which he is enrolled), and similar “normal”, “routine” activities were highlighted. The text was replete with references to the young man’s persistence, sense of humor, aspirations, and pleasantness. Again, none of these characteristics would be deemed noteworthy—and certainly not newsworthy—if exhibited by any other person. The editorial bias, to wit; these things are remarkable—and newsworthy—because this man has a disability and uses a wheelchair. The low expectations for persons with disabilities betrayed by the newspapers judgment about the interest and value of this man’s story both reify and nurture the assumptions discussed in the Fine and Asch article. Such stories highlighting “accomplishments” and implicitly unexpected “normal” behaviors are all too commonplace.

Such articles have prompted me to consider how we might understand their appeal. I’m developing the concept of The Inspiration Quotient (In. Q.). The In. Q. can be understood as the relationship between expectations for and achievements of persons with disabilities. Given the chronic, widespread condition of low expectations, even nominal “achievements”, such as depicted in the Courier and Press article, are “extraordinary”. Their appeal includes an affirmation that people with disabilities—for whom we have no animus—actually can do “normal” things. They are deemed “inspirational”. It makes the non-disabled viewer feel better.

The “average” In. Q. is 100 (a perfect match between expectations and achievement), where the subject does as expected. In. Q. s in excess of 100 occur either because expectations are incredibly low (the usual condition) and achievements are average (such as in the case above), or because achievements exceed the typical low (v. “incredibly low”) expectations. Below average In. Q. values occur when the achievements are substantially lower than expectations. Such condition seems most common in educational settings where expectations have to do with compliant school behavior rather than academic performance.

In the absence of “noteworthy” achievements, effort counts in the In. Q. computation. This is reflected in accounts of the “achievements” of Special Olympics participants, where medals are awarded for skills that are of little or no functional value. (For example, the softball toss is scored on distance rather than accuracy or reciprocity. Most folks who throw a softball throw it to another person, not just randomly on the field.), and every participant is a “winner” just for trying. (Effort counts!) Media accounts of these events are replete with effusive, evocative accounts by the dispensers of copious hugs who attest to the affirming effect of dispensing hugs to such “deserving” recipients. (Beneficence rewarded!) No one questions the paradigm that victimizes Olympians thereby creating opportunities for “normals” to express their generosity and love.

Obviously, the In. Q. is very susceptible to the biases and interpretation of the observer. For some, that we disabled folks are able to get out of bed and go to the supermarket is “inspirational”, warranting a high In. Q. for us—we should feel good, right? Who knows, the newspaper may even want to do a story about our shopping, deeming it newsworthy!

Using us and our lives as inspirational icons that reinforce the very limiting judgments and behaviors that serve to perpetuate our marginalization is duplicitous at best, and cruelly exploitative, at worst. This conspiracy of low expectations, ascribing inspirational value and failure to understand the experience of disability as a dynamic, socially constructed phenomenon, where the quality of our lives is predicted more by what happens around us than by what our disabilities are, continues to relegate us to second class citizenship.

Assumptions That Challenge the Status Quo

In our textbook, Ending Disability Discrimination: Strategies for Social Workers, my co-editor, Martha Raske, and I argue that disability is only reasonably understood in this dynamic framework where the quality of interaction is a more important predictor of achievement and satisfaction than the disability itself. Disability-related impairment is viewed as a consequence of discrimination, not as a consequence of the disability itself. Our book is based on the assumption that disability and impairment are not immutably linked. As a wheelchair user, I’m not usually impaired, but in an environment that has architectural barriers such as steps, I am impaired even though my disability is exactly the same in both circumstances. So, impairment is not predicted by my disability but by the receptiveness of the environments in which I operate.

A second assumption is that disability-related impairment is socially constructed. It’s all about the capacity in communities for all citizens to access opportunities to participate, to achieve, to fail and to be held accountable. This suggests a much broader target system for intervention on behalf of people with disabilities. Continuing to focus interventions on mitigation, restoration, and rehabilitation, while continuing to ignore broader systems, prejudices and marginalizing forces, is short sighted and of very limited positive consequence for people with disabilities.

Raske and I contend that “disability” is a nominal state that is accompanied by limiting assumptions, prejudices, and stereotypes only if it suits the observer. In this sense, disability is a name only. It does not in itself suggest inferiority, superiority or anything else. To the degree that such judgments accompany the conceptualization and discourse about disability, they reflect the biases of the holder of such judgments. Clearly, we have made impressive improvements—even though we have much work to do—in understanding race and gender relations. We must work to further this understanding of disability.

Disability and pride can coexist. This assumption casts a different light on the perceptions of and about persons with disabilities than is consistent with rash conclusions about our value as icons of inspiration. Pride is an important confounding variable in the In. Q. calculation. How does one assess the influence of pride as a motivator in our living rich, productive lives—not in spite of or because of our disabilities—but with our disabilities? Most folks think disability is anathema to pride. The concept of “Disability Pride” is an oxymoron to them.

Finally, Raske and I assert that helpers/advocates/activists must assume a “working with” rather than a “working on” orientation when interacting with persons with disabilities. This collaborative, consultative role is contrary to the usual stereotypes and expectations concerning persons with disabilities. The evidence that little is at risk if we change our orientation is abundant. It was again validated in the NOD/Harris survey.

The Americans with Disabilities Act was signed into law on July 26, 1990. The U.S. Supreme Court’s Olmstead decision was June 22, 1999. These seminal changes in the glacial movement of legislation and litigation involving people with disabilities have not resulted in radical or even significant granular changes in American culture. People with disabilities may well be the last discovered minority group in the U.S. It’s up to all of us who are willing to challenge and question the assumptions that support the status quo to insist that changes be made. We need to challenge In. Q. assumptions. We need to challenge popular portrayals of people with disabilities. We need to challenge low expectations. We need to challenge patronizing treatment of and second class citizenship of persons with disabilities. It’s imperative that we each make the changes that we can. The stakes are high. The need is great. LET’S GO DO IT! LET’S END DISABILITY DISCRIMINATION!!!