Comments from the Real World

Y H. BARRY WALDMAN DDS, MPH, PHD, STEVEN P. PERLMAN DDS, MSCD, DHL (HON), ANDREW G. SCHWARTZ, DDS, FACD AND MATTHEW COOKE, DDS, MD, MPH

A recent article in the New York Times about an older woman described the history of Nancy R. "Nancy's infirmity is unusual and goes back to when she was a 2-year-old in the Pittsburgh area in the later 1930s. She had polio, though her parents knowing how ostracized children with the virus could be, kept that a secret. They destroyed all the evidence and they never told (her). Only many decades after the fact did she figure out the truth and only in recent years did post-polio syndrome… force (her) to use a cane, then a wheelchair."1 The reality is that:

• Among individuals of all ages with disabilities, "… more than 2 million Americans use wheelchairs for daily activities, and 6.5 million depend on canes, crutches or walkers."1

• These numbers, most assuredly, will increase. In 2015, there were 39.9 million U.S. residents with severe disabilities (12.6% of the population). By 2030, the number of individuals with severe disabilities will increase to 45.8 million. (Note: The projected estimated number of individuals with severe disabilities is not available for 2030. It was developed using Census Bureau population projections and the 2015 proportion rate for individuals with severe disabilities in 2015.2)

Nancy commented, "…In the chair she became invisible. In the chair she became radioactive. People looked over her, around her,

hrough her. They withdrew. It was the craziest thing. Doctors' offices are the worst... describing how receptionists addressed whoever's pushing her… 'Does this lady have an appointment? Does this lady have her medical card?'" 1

In the past, when many youngsters and the not-so-young people with disabilities were "sheltered" in institutions or the backrooms of homes, the general public may have had limited contact with them. "Prior to the twentieth century, social attitudes reflected the view that persons with disabilities were unhealthy, defective and deviant. For centuries, society as a whole treated these people as objects of fear and pity. The prevailing attitude was that such individuals were incapable of participating in or contributing to society and that they must rely on welfare or charitable organizations." 3

But times have changed. Individuals with a wide range of disabilities reside in our communities; they receive their education in public sector schools, are employed in countless jobs, are seen in shopping malls and appear in current movies. Surely, these experiences have provided ample opportunities for the general public to interact with individuals with disabilities to overcome past prejudices. Nevertheless, a range of perceptions persist.

The Good: We've all seen the images in the movies: an angel ic-looking patient resting demurely in their hospital bed, talking about how, despite their illness/disability, they are so very thankful that they have been able to live this life. These images often are used to express an inherent goodness in the ill character, as if they take on the burden of their disease/disability with a grace and inner strength that healthy people could never have…

Guy, wheelchair

THE ROAD AHEAD: Among individuals of all ages with disabilities, more than 2 million Americans use wheelchairs for daily activities, and 6.5 million depend on canes, crutches or walkers; These numbers, most assuredly, will increase.

God has a plan: I can guarantee you that all persons with illnesses/disabilities have been told this more than once. Someone with strong faith and a belief that everything happens for a reason tells us that it will work out because God has a plan, or our suffering will be rewarded in the afterlife…

The Bad: People with disabilities/illnesses are lazy and entitled. It's true that medical problems make life hard. Disability payments take up a massive part of the federal budget, and in 2013, 11 million Americans were recipients of these payments. Less than 20 percent of Americans with disabilities are employed." 4

But more than ever before, people with disabilities are valued, assimilated and included members of society. This is due, in part, to portrayals of people with disabilities within in the popular media. We see people with disabilities shown on television presented in roles as police officers, judges, lawyers, and teachers, many of which hold a level of professional respect in our society. In some manner, reality television has broken all of the molds, showcasing real people with disabilities who accomplish unexpected tasks and are successful in their chosen professions.5

THIS IS WHERE I STAND!

"As someone with cerebral palsy, I'm well aware of the stereotypes and preconceptions many people have in their head regarding disabilities. For all of my success inside and outside of the classroom, I know there are still a great number of people whose expectations I still haven't met, or will never meet. They judge me by how I walk and assume I am "different" and thus don't want or care about my perspective. This is a non-disabled man's world…

To know me is to know I am so much more than how I walk. I have the same feelings, thoughts, and emotions as everyone else. …As someone with a disability, there will always be an extra hoop to jump through — the hoop of public perception… We are fed a lie that perfection is beauty, and "normalcy" is the goal. I will never be normal, and frankly, I've stopped trying to be.

be. Yes, I have a disability, and so do nearly 53 million others of my fellow Americans. We belong at the table too, and we mustn't stop until all of us are there. It might take longer to get there, we might stumble along the way, but I dream of a day where all of us are there."6

AND SOME DISABILITIES ARE INVISIBLE

Some disabilities are more obvious than others. Many are immediately apparent, especially if someone relies on a wheelchair or cane. But others — known as "invisible" disabilities — are not. People who live with them face particular challenges in the workplace and in their communities. It is hard to pinpoint the number of Americans with an invisible disability, but it's estimated there are millions. Their conditions may range from lupus to bipolar disorder or diabetes. The severity of each person's condition varies, and the fear of stigma means that people often prefer not to talk about their illnesses.

"… in employment disability discrimination, charges filed with the Equal Employment Opportunity Commission between 2005 and 2010, the most commonly cited conditions were invisible ones … 'We'd park in disabled parking and she didn't use a wheelchair or a cane, and so people would always give us dirty looks and scream at us…'" 7

scream at us…'" 7 Attitudes and behavior towards people with disabilities is not a special consideration solely in the United States. For example:

• "Two thirds (67%) of the British public feels uncomfortable talking to people with disabilities.

• Over a third (36%) of people tend to think of people with disabilities as not as productive as everyone else.

• Over four-fifths (85%) of the British public believe that people with disabilities face prejudice.

• A quarter (24%) of people with disabilities have experienced attitudes or behaviors where other people expected less of them because of their disability.

• One fifth (21%) of young British adults 18-34 years old admit that they have actually avoided talking to a person with disabilities because they weren't sure how to communicate with them.

• People with disabilities and their families report that negative attitudes affect every area of their lives – in the playground, at work, in shops, on the street." 8

"… the message that a child with disability receives about himself or herself from their environment determines to a large extent their feelings about who they are, what they can do and how they should behave. In the same way, the inaccurate presentation of disability negatively influences how the people in that cultural set up interact with persons with disabilities. The resultant attitudes include pity, fear, uneasiness, guilt, sympathy and respect."9 Yes, there is need for change and understanding that:

• "No two people are the same…

• A disability is only one characteristic of a person …

• Children with disabilities are like all children in that they want friends, respect and to be included…

• You can't "catch" a disability from someone else…

• Just because someone has a physical disability … does not mean they necessarily have a cognitive disability.

• Children with disabilities can do many things … but it might take them longer. They may need assistance or adaptive equipment to help them." 10

But until that time, how well are families preparing their children with disabilities for the realities they will face in interacting with the general public?

"The public perceptions of disabled people needs to change – we're not just paralympians or scrounges." 11 •

A guy, wheelchair

COMMUNICATION BREAKDOWN: Attitudes and behavior towards people with disabilities is not a special consideration solely in the United States; 21% of young British adults admit that they have actually avoided talking to a person with disabilities because they weren't sure how to communicate with them.

ABOUT THE AUTHORS: H. Barry Waldman, DDS, MPH, PhD Distinguished Teaching Professor, Department of General Dentistry at Stony Brook University, NY; E-mail: h.waldman@stonybrook.edu Steven P. Perlman, DDS, MScD, DHL (Hon) is Global Clinical Director, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine. Andrew G. Schwartz, DDS, FACD is Clinical Assistant Professor Director, Division of Behavioral Sciences and Practice Management, Department of General Dentistry School of Dental Medicine, Stony Brook University, NYMathew Cooke, DDS, MD, MPH is Associate Professor, Department of Anesthesiology & Pediatric Dentistry, University of Pittsburgh School of Dental Medicine, Pittsburgh PA.