Nothing about us without us: an issue of inclusion?

"Nothing about us without us" describes the goal of persons with disabilities who are becoming increasingly active in their fight against prejudice, discrimination, and oppression and their striving toward empowerment (Charlton, 1998). "Nothing about us without us," although applicable to any minority group denied representation in decision making that affects their lives, has evolved as the official slogan of Disabled Peoples' International (DPI) founded in 1981 ([e-mail]). The year 1981 was an especially important landmark in the worldwide struggle of people with disabilities for equal rights and opportunities in that it was declared by the United Nations to be the International Year of the Disabled.

The International Year of the Disabled, followed by the International Decade of the Disabled, was a time of heightened or initial awareness among adults with disabilities. It brought consciousness that they needed to organize a resistance movement against injustices they routinely experienced. Among the most hurtful social injustices was failure to be included on professional, business, and government executive boards for which they had qualifications equal to those of existing members. Indeed, it seems that professionals who emphasize inclusion seldom apply their philosophy to practices that might lead directly to election or appointment of people with disabilities to positions of power.

Today DPI is a thriving organization with headquarters in Winnipeg, Canada, with an international website and five regional websites (Africa, Asia/Pacific, Caribbean, Europe, and Latin America). DPI's last international conference attracted over 3,000 participants (all disabled) from 109 countries. Moreover, DPI demonstrates its commitment and organization through an outstanding strategic plan, 2002-2006, on its website.

The purpose of this article is to challenge, "Should PALAESTRA readers know about DPI and share this with others?" "Should PALAESTRA readers know and implement DPI's slogan, Nothing about us without us?" "How might this be done?" "Are we working with persons with disabilities or for them?" "Why?" "Are there two worlds: the able-bodied and the disabled?" "Is there a need for our interests and concerns to extend beyond our own country?" These questions might be used to guide debate, discussion, or critical thinking activities at conferences and in preservice, in-service, and continuing education settings. Following is relevant information, with some of my favorite books cited.

According to statistics of the United Nations, more than 600 million persons with disabilities are documented worldwide. It is unclear whether this number includes the large numbers with AIDS, HIV, and malaria, but I doubt that it does. Over 80% of persons with disabilities live in developing countries, where racism, classism, and sexism combine with poverty (and sometimes religion-based discrimination) to promote genuine oppression. As such, people with disabilities (PWDs) form the world's largest minority group (Shapiro, 1993) with respect to power over their own lives and those of loved ones. Note that the abbreviation PWD comes from the terminology of the DPI and the United Nations and hence is used in most countries. In the USA, however, the common equivalent individuals with disabilities (IWDs) comes from the terminology of the Individuals with Disabilities Education Act (IDEA) and its many amendments. While some professionals dislike abbreviations of this sort, they no doubt speed up reading and note taking, a valuable contribution in busy lives. I recommend these abbreviations in reading, writing, and thinking, but NOT in professional speaking engagements.

Even in the United States, PWDs identify with oppression and marginization (e.g., Goodman, 2001; Jankowski, 1997; Mackelprang & Salsgiver, 1999). Although definitions of oppression abound, I especially like "Oppression occurs when individuals are systematically subjected to political, economic, cultural, or social degradation because they belong to a social group" (Charlton, 1998, p. 8). Oppression is mainly associated with lack of power, and (as such) is the opposite of empowerment, a term increasingly used by professionals, but not always correctly. Empowerment is best defined as acquiring the power needed to achieve and maintain equal rights and opportunities from the privileged (or dominant elite) that holds power over money, accessibility, freedom, peace, language, normative behavior, and everyday rights and opportunities. In oppression theory, the privileged in Western society (also deemed the majority because they are generally elected) are typically described as white, male, able-bodied, upper or middle class, Christian, English-speaking, and heterosexual (e.g., DePauw, 1997; Goodman, 2001). When evaluating this concept, think about the persons in such positions as presidents, chief executive officers, full professors, head coaches, and board members. The excellent book, Breaking the Glass Ceiling (Morrison, White, & Van Velsor, 1992), while based on research about executive women in management positions, applies to all minorities. Many of them can reach keynote speaker or board level, but seem to hit a glass ceiling when aspiring for something higher. An exception to this occurs only in organizations having many minority members and/or a plan for assuring representation in the spirit of "Nothing about us without us."

Is it time for people with disabilities to be represented at the executive level in professional preparation programs, publications, conferences, and the many organizations that teach about, advocate for, promote sport, or make policies concerning disability? Until this occurs, people with disabilities can rightfully say they are experiencing oppression. They have no power at the executive level, and others like them have no direct representation and voice. Moreover, society has few models for moral, ethical behaviors in regard to sharing power and fostering real inclusion. If organizations teaching about and speaking for disability do not include PWDs at their highest levels, who will? Givens, with regard to this stance, are that the PWDs elected or appointed must have equal (although perhaps different) qualifications to those of non-PWD members and that representation by another minority does not substitute for direct representation of those the organization was designed to serve and to empower.

Looking about me, there must be many professionals who do not agree with me or simply do not care. At most of the conferences I attend, few speakers have disabilities. As I travel from one university program to another, I note the lack of people with disabilities as students, faculty members, and practicum directors. With the exception of the Paralympics, I do not see PWDs as officers of organizations, executive board members, or planning committee organizers for conferences. I do not see them as gatekeepers on editorial boards and research committees. Moreover, I do not see much discontent about this state of affairs by the persons with disabilities. Am I blind?

Is it time for attitude research to extend beyond inclusion in ordinary settings to inclusion at executive levels? Is it time to systematically prepare PWDs for leadership at early ages and to create personal aspirations for leadership? Is it time to enter into equal status partnerships in projects pertaining to PWDs? Is it time to share the power and the resources?

THIS IS AN ISSUES ARTICLE!!! THAT MEANS READERS SHOULD WRITE TO PALAESTRA AND LET US KNOW HOW YOU FEEL, THINK, AND ACT ABOUT THIS ISSUE AND WHY. As always, thank you for reading and thinking. Now please provide input.

Selected References

Charlton, J.I. (1998). Nothing about us without us: Disability, oppression, and empowerment. Berkeley, CA: University of California Press.

DePauw, K.P. (1997). The (in) visibility of disability: Cultural contexts and "sporting bodies." Quest, 49, 416-430.

Goodman, D.J. (2001). Promoting diversity and social justice: Educating people from privileged groups. Thousand Oaks, CA: Sage.

Jankowski, K.A. (1997). Deaf empowerment. Washington, DC: Gallaudet University Press.

Mackelprang, R., & Salsgiver, R. (1999). Disability: A diversity model approach in human service practice. Pacific Grove, CA: Brooks/Cole.

Morrison, A.M., White, R.P., & Van Velsor, E. (1992). Breaking the glass ceiling: Can women reach the top of America's largest corporations? Reading, MA: Addison-Wesley.

Shapiro, J.S. (1993). No pity: People with disabilities forging a new civil rights movement. New York: Times Books.

ACKNOWLEDGEMENTS: Thank you to Eli A. Wolff of Boston who reminded the editor, during an especially difficult time, of "Nothing about us without us" and Joseph Lev of Jerusalem, Israel, who has shown me the persistence and endurance that change with respect to real inclusion requires.

Claudine Sherrill, Professor Emeritus from Texas Woman's University, Department of Kinesiology, residing at 11168 Windjammr Drive, Frisco, TX 75034; [phone]; [e-mail]; is Issues Department Editor.