Herb's World Congress Report 2006

Why the message misses

By Herb Drill

I’m disabled, so I’ve been excluded, a victim, and I’m invisible. I believe the public wants it that way. Maybe that’s why positive news regarding the disabled in the general media is usually missing. That was the focus of my comments at the seventh annual World Congress on Disabilities and Expo at the Pennsylvania Convention Center in Philadelphia .

Edward M. Shapson, who heads Philadelphia-based Shapson Public Relations, countered, It’s “absolutely critical that the news and information you seek to disseminate be relevant to the intended audience. Think of all the messages every one of us is bombarded with on a daily basis - each one competing for our attention. … No matter how important the message is to you and your organization, no matter how hard you work to get that message `out there,’ it’s doomed to fall on deaf ears if it isn’t relevant to the intended audience or tailored to each specific channel of communication.”

Shapson has counseled regional, national, and international organizations on strategic planning, image enhancement, issues management, constituency relationships, internal communications, crisis management, and media relations. His clients in the non-profit arena have included ALS Association, American Cancer Society, American Red Cross, and Developmental Enterprises Corp. (DEC), which provides vocational and habilitation services for developmentally disabled adults. For many years, Shapson served on the regional board of the American Cancer Society and has served on the Public Awareness Committee of ALS ’ Philadelphia Chapter, A graduate of Temple University , he serves as a lecturer and currently teaches a graduate level course in public relations at the Great Valley campus of Pennsylvania State University .

WCD Expo is one of the largest events for people with disabilities and all who are affected, such as family members, friends, healthcare professionals, caregivers, and educators. More than 200 exhibitors displayed products and services designed to ease and enrich the lives of individuals facing a range of challenges.

As a media member, my contention was bad news certainly gets printed. In Jacksonville , the Florida Times-Union reported a woman was outside St. Vincent's Medical Center . A guard said she couldn’t return to her bed unless she left her service dog outside. She had had heart stent surgery. The dog helped with mobility. Only after she got a cop did nurses call her doctor and she and her dog were back in the hospital - after two hours outside without care.

The U.S. Dept. of Justice states up to 83% of developmentally disabled women will be assaulted, 50% above the U.S. figure. Plus, Chicago psychologist and paraplegic Carole Herbster claims “society feels it shouldn’t have to deal with the so-called reality of disability and emotional discomfort tied to it.”

All of this is unjust, and economic tragedy,” I argued. “The National Organization on Disability says our ignored 54 million people have total income exceeding $1 trillion and $220 billion in discretionary income. More than 20 million U.S. families have at least one disabled person. We spend nearly $15 billion on travel. This excludes spending by families, friends, escorts - influenced by us.”

It’s my belief “we must make the media see disability gains. As advocate Forrest Gump may have observed, `Disability is … as disability does.’ We must raise a ruckus, make some noise. There are stories about people like Charlie Winston, in St. Louis . He lost his eyesight - not his vision. His Telability Media is a must CD with U.S. , regional, and local newspapers, magazines, radio/TV stations - craving your positive disability stories. Editor & Publisher Magazine has a similar general media guide.

You can tell about a California federal court suit against Target Stores. In National Federation for the Blind vs. Target Stores, a judge denied Target's bid to dismiss the class-action suit. Target argued only physical stores were subject to the ADA . NFB wanted Target to add invisible code alt-text which allows screen readers used by the blind to surf the web.”

The “ubiquitous failure to communicate” isn’t limited, Shapson added. “Communications are very often erratic, irregular, or flat-out non-existent between the organization and staff members. Let’s not [forget] referral sources, opinion leaders and decision influencers, employees, and in many cases, funding sources, volunteers, regulatory agency personnel, and the regional print and broadcast media as conduits of information.”

The PR executive said it’s fair to ask: “Why do so many disability-related non-profits very often experience considerable difficulty generating wider, more positive coverage in the non-disability media? Having provided public and media relations services to non-profits, including Developmental Enterprises Corp. and the ALS Association of Philadelphia, I’ve found:

“A community-based non-profit without a clearly-defined and ambitiously promoted identity is without a bright future.“

Shapson asked rhetorically: “Who are you? What do you stand for? What makes you especially valuable to your constituency? What image do you want to project for your organization, your programs and services, your people?” He warned the “dangers of an ill-defined identity are enormous, especially if yours is a non-profit largely dependent upon contributions from individuals, corporations, and foundations.”

Shapson remarked the general public “often mistakes people with disabilities as helpless, hopeless individuals. Largely through an aggressive publicity effort that turns the media spotlight on the men and women whose quality of life is made significantly better by DEC, adults with developmental disabilities are projected as people performing various jobs with remarkable work ethic, who pay their fair share of taxes, make purchases from local merchants, and as good neighbors donate vast amounts of time and energy to a variety of community causes and charities.”

Shapson’s second observation was:

Too many groups see “nothing wrong with treating communications much like tap water, something that can be turned on and off at will.

“Every healthcare provider, community service organization, institution, company, regardless of sphere of interest has public relations - but is the image projected [what] you desire? Do you wish to manage your communications, or are you willing to simply roll the dice and hope for the best?” Shapson stated. “To be productive, meaningful, and cost-effective, public, media, and community relations must be executed in a proactive, pinpointed, and continuing manner.”

I added, “If the Enron scandal has worth, it's the whistle-blower who tried to do the right thing. You - yes, you - can speak to business and social groups. Stress that a disabled employee appreciates a job and pays taxes.

Today, we have iPod, iTunes, YouTube, MySpace. What happened to the concept of us? We must be Righteous, Brothers. In her book Living History, Sen. Hillary Rodham Clinton quotes Methodist leader John Wesley: `Do all the good you can, by all the means you can, as long as you can.’ We must get the word out on what the disabled can do. We must get along, be a village, be one America . We must make sure no one is excluded, no one is victimized, and absolutely no one is invisible.