A disability by definition is a limit on a person’s proficiency is some area of daily living. As such, tasks that most people take for granted may be very difficult to accomplish, and day-to-day activities may require far more effort.

Daily Tasks

Transportation is often an issue for people with disabilities. The ability to get from one place to another can be limited by bus schedules, the ability of taxi cabs, and the schedules of friends and relatives. This complicates activities like grocery shopping, going to work, making medical appointments, and a great number of other tasks.

Amy Mesara, a Kalamazoo resident who is legally blind and suffers significant hearing loss, relates how this is not only an aggravation, but can have economic implications, as well.

“We went to the store to do some grocery shopping because they were having a big sale,” she said. “But when we got there the shelves were empty. Because we had to wait for transportation, we ended up getting there after the sale items were gone and spent more money. The early bird gets the bargain.”

Even before leaving for the store, there are other things that have to be done. Such simple tasks as getting dressed, fixing breakfast, or even taking a shower can be time-consuming and difficult.

Daily indignities are also common. For those in wheelchairs, using a public restroom can be a loathsome experience. Before passage of the Americans with Disabilities Act (ADA), it was not uncommon for restrooms in businesses to lack handrails, or to have stalls too narrow for wheelchairs. In such cases, it was often necessary for a person using a wheelchair to crawl on the restroom floor and pull herself up to the toilet. Even after passage of the ADA, there are businesses that are not in compliance), restrooms with broken handrails, and other barriers.

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Finances

A disability can also limit one’s lifestyle in any number of ways. Money is a major problem facing people with disabilities. The relationship between disabilities and poverty is cyclical; poverty results in environmental exposures and malnourishment that can lead to disabilities, and medical expenses and barriers to employment caused by disabilities can lead to poverty.

Roughly 70% of people with disabilities are unemployed. One reason is physical ability; the ability to find work has a direct relationship with the severity of the disability a person has. Another reason is reluctance on the part of employers to hire people with disabilities, fearing that accommodating such employees would be expensive. In reality, such costs are typically very low. According to the President's Committee's Job Accommodation Network (JAN), over 70% of all employers found that accommodating a person with a disability cost less than $500. (This figure includes the 20% of employers who experienced no costs.) Despite these figures, and despite the fact that it is illegal, employers routinely discriminate against people with disabilities. In 2001, the U.S. Equal Employment Opportunity Commission reported just under 160,000 complaints under the ADA. These are only reported cases. Most estimates are that these reported cases reflect between a third and a quarter of actual cases of discrimination on the basis of disability.

Donald Perkl faced such discrimination when he went to work for Chuck E. Cheese in Madison, Wisconsin. A regional manager fired him from his job as a janitor, telling shocked employees and management at the local store that Chuck E. Cheese did not hire “those kinds of people.” After the company refused to budge—despite pleas from his co-workers that the company give him his job back—Perkl filed suit. The resulting $13 million judgment against the company was hailed by advocates for people with disabilities as a victory for equal rights and dignity.

The employment-related problems experienced by people with disabilities serve to exasperate another problem: the additional expenses that come with a disability are significant. In addition to increased medical costs, people with disabilities find that they face other expenses. A wheelchair suitable for long-term use costs approximately $1,500. (Electric wheelchairs cost significantly more.) The average cost per year of maintaining special footwear and orthotics (specialized mechanical devices to assist with movement) for people with minor disabilities is $150 per item. Other costs include specialized bathtubs, modified toilets, hoists, continence pads, small pieces of equipment to aid in eating and dressing, and personal assistance services. Costs such as these can total in the tens of thousands of dollars annually, and many are not covered by insurance or Medicaid.

Government policies can also contribute to poverty among people with disabilities. One example of such a policy is the Medicaid “$2,000 Rule,” which exempts any individual who has $2,000 or more in liquid assets from eligibility. Until the individual “spends down”—spends the money to reduce assets below the $2,000 threshold—(s)he cannot receive services through Medicaid. Rules such as this one force people with disabilities to never have any savings or assets, creating forced poverty. People are required to limit the number of hours they can work to maintain their Medicaid eligibility. Not only do many of these people hold jobs that do not provide health insurance, but the daily expenses associated with their disabilities are very high. As a result, they are given a choice: live in poverty but retain eligibility for Medicaid, or they can work and become ineligible for Medicaid, but live in poverty anyway because of the need to cover costs that Medicaid would cover if they were eligible.

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Attitudes Toward People with Disabilities

Historically, societal attitudes toward people with disabilities have presented significant problems. There is a natural tendency for people to be uneasy around people who they think of as “different” from themselves, and such uneasiness often leads to misconceptions or even fear. While these attitudes are changing and education about disabilities is becoming more available, the problem is still especially difficult for people who have mental retardation or other developmental disabilities. It can be a tremendous barrier to inclusions and independence.

Misconceptions

People with disabilities—especially developmental disabilities—are often painted with a broad brush. Typical perceptions of such people often include ideas that they are stupid, violent, unaware of their surroundings, or sick. Because such stereotypes make independence and community involvement more difficult, they can often lead to isolation and depression.

What causes these misconceptions? There is a persuasive argument that human beings have a natural tendency to “fill in the blanks” when information is missing. When confronted with a person who has a disability, the typical person suddenly finds that there are a lot of these “blanks” that need to be “filled in” based on instinct and previous experience. Unfortunately, these blanks are very often filled with incorrect information.

The implications of these misconceptions are far-reaching. If one perceives a person with a disability to be sick, one will take great pains to avoid such a person because the “sickness” might be contagious. The perception that people with disabilities are “stupid” has been the root cause of many injustices throughout history, from incarceration of such people “for their own good” to various forms of abuse and neglect. Perceptions of people with disabilities as “violent” were key in the eugenics movement that led to the involuntary sterilization and imprisonment of people with mental retardation in the last century.

Such injustices are not always on a grand scale; most are very personal in nature. Schoolyard taunts of “retard” and “dummy” are only the beginning for people with developmental disabilities. Common experiences include being denied the chance to make basic decisions, being “talked down” to, and simply being ignored.

Many times a “personal limitation” is confused with a “legal limitation.” For instance, a person with mental retardation has the right to vote in the United States. Personal limitations—the inability to speak, for instance—may prevent such a person from being able to do so without assistance. It is frequently assumed that the personal limitation necessarily creates a legal limitation, and that the person does not have the right to vote. This is an inaccurate assumption, and has resulted in the loss of such basic rights for thousands (if not millions) of people with disabilities.

There is also a misconception that “mental retardation is a form of mental illness.” As discussed previously in this booklet, mental retardation is a condition unrelated to mental illness. Nonetheless, this common misconception remains, and as a result, individuals with mental retardation are subjected to the stigmas associated with mental illness in addition to the stigmas associated with the condition they actually do have. Thus, this misconception tends to complicate the barriers faced by such people.

Fortunately, greater education and self-determination efforts have started the process of clearing up misconceptions. When Brandon accompanied Donald—who has a developmental disability—on a cruise, he found that people welcome Donald with open arms. “There was a pleasant disposition shared by most of the people we encountered,” he recalled. “It was a very positive atmosphere.”

Regina, who went on the same cruise, had a similar response. “Several people took the time to engage us in conversation and were genuinely interested in what we had to say. We made many new friends and it was a great experience,” she said.

Fear

One of the attitudes commonly encountered by people with disabilities—especially developmental disabilities—is fear. Such fear is almost always based on a misperception that causes an instinctive reaction.

One cause of fear is the misperception that a person who has a disability is “sick,” and there is an instinctive desire to avoid being close to people who are sick because they might be contagious. For this reason, it is common for people with disabilities to feel isolated and unwanted.

Another cause of fear is a misperception that a person with a developmental disability is “violent.” A number of factors contribute to this misperception. Even though long discredited, the eugenics theory that mental retardation was linked with criminal tendencies has lingered. It is not uncommon for people with mental retardation to lack a sense of “personal space” or speech volume, and such close, loud contact can be mistaken for aggression. Media portrayals of the “retarded killer” in movies and television programs have molded people’s opinions. And, like any other group of people, the group of people with developmental disabilities does contain some individuals with violent tendencies. When these people act out, all of the pre-existing prejudices are reinforced and the stereotype appears “validated.”

In addition to leading to isolation, fear of violence has another, more damaging, effect: it often leads to violence on the part of the person experiencing the fear. This kind of “fight or flight” reaction has an ironic result: although people with developmental disabilities are frequently perceived to be prone to engage in violence, they are far more likely than the general population to be the victims of violence. Physical violence, emotional abuse, and sexual abuse are “pervasive” problems faced by adults with developmental disabilities, according to a 1998 State University of New York study. Emotional abuse is the most common form of abuse, but between 25% and 67% of all adults with developmental disabilities in the United States have been the victims of sexual violence. (Among women with developmental disabilities, the numbers are significantly higher.) Other studies show that at some point in their lives, 90% of people with developmental disabilities will experience some kind of sexual abuse.

Such fears can also lead to housing discrimination. Around the country, attempts to create new group homes in quiet communities are vocally opposed by people who fear violence by the people who will live in them. Things are no different in Michigan; when the Macomb-Oakland Regional Center (MORC) attempted to open a group home in suburban Detroit, neighbors mounted a campaign to prevent the home from opening. Neighbors Scott and Peggy Babin, Nosh and Katrina Ivanovic, Thomas Fortin, and Paul Hebert sent out letters warning that the neighborhood would no longer be safe and property values would plummet if the group home were to open in the neighborhood. Included in their mailings was a newspaper article about a resident of a group home who had raped a nine-year old girl. When the ensuing pressure failed to dissuade MORC from opening the home, the neighbors pooled their money and bought the home out from under MORC specifically to prevent the group home from moving in. (Michigan Protection and Advocacy Service, Inc. v. Babin, 18 F.3d 337, 6th Cir. 1994.)

Even after such homes are established, the people who live in them are sometimes viewed with suspicion and fear. “Edward” and “Lynn,” who bought a house in Kalamazoo, reported that they were pleasantly surprised after moving in to learn that a group home was three doors down. Lynn’s mother, however, had a substantially different reaction. “You have to sell this house!” she told Lynn. “Those people are going to break into your house and rape you! They’re dangerous!”

Fortunately, these attitudes are changing, as well. Edward reported that four years after they moved into their home, the only physical force he had seen from the people who lived in the house was directed at his car: they helped him push it out of a snowbank. “They’re wonderful folks,” he said. “I wish more of our neighbors were like them.”

What is most interesting about these kinds of fear is that research shows that it is probably safer to live next door to a group home. People with developmental disabilities live their lives like anyone else: they watch TV, visit friends, go for walks, hold jobs, and participate in church and community organizations. Violent behavior is not typical.

Discounted Worth

Among many, there is a perception that discrimination and even violence against people with developmental disabilities is socially acceptable. The Judge David L. Bazelon Center for Mental Health Law, a national organization representing low-income adults and children with mental disabilities, undertook an investigation of the increasing number of hate crimes against people with disabilities. The organization reached the conclusion that the motivation for these crimes was the perception that people with disabilities are not equal, deserving, contributing members of society, and, therefore, it is okay to attack them.

“Jennifer,” a student who lives in Plainwell, Michigan, related an episode that illustrated this for her. “I was eating with my cousins at a local restaurant with my 10- and 12-year-old cousins when I saw some friends of mine who lived in a group home in my neighborhood,” she said. “While I was talking to them, my cousins kept looking down at their food, and when my friends left, they said that I wasn’t supposed to talk to ‘people like that’ because, according to their father, they ‘aren’t really human.’ When I asked if that meant it was okay to ignore them or even do things to hurt them, they both told me ‘yes’! And this was a parent telling them this!”

“Amber,” who works in Kalamazoo, related a story about one of her co-workers, who was encouraging her son to harass a child with mental retardation so he would quit the little league team. “She said he was ‘just a retard’ and didn’t ‘have any right to play on the same team’ as her son,” Amber said. “She had no problem telling us that she had advised her son to call the kid names and push him around. She acted like it was no big deal.”

These barriers—daily inconveniences, financial complications, and negative attitudes—serve to isolate people with disabilities. Not only is it often inconvenient and expensive to obtain opportunities to participate in the community, but once they do they often receive the message that they are not wanted. The resulting anger, depression, and low self-esteem further complicate efforts for inclusion.

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The Good News: Changing Attitudes Bring Greater Respect

Fortunately, there’s plenty of good news. The last few decades have seen great strides toward equality and independence for people who have disabilities.

While stereotypes and prejudices toward people with disabilities persist, they are slowly changing. Gone are the days when people with disabilities were considered literally evil; today, mental retardation and other disabilities are understood to be simple conditions, not indications of bad morals or the measure of a human being’s worth.

The law no longer treats people with disabilities as a danger to society; rather, laws like the Americans with Disabilities Act are now in place to offer them protection from discrimination. Instead of trying to segregate people with disabilities, today’s legislation is intended to provide opportunities for inclusion and community involvement.

Services for people with disabilities are likewise recognizing the value of the people they serve. Where institutions once housed people with developmental disabilities as inmates, organizations like ROI now provide real homes and really serve the people who live in them. Independence is fostered, encouraged, and supported. Personal choices are celebrated. Individuals are treated as such.

Communities are also becoming more welcoming and accessible to people with disabilities. Restrooms that are wheelchair accessible are now the rule—and not the exception—in public spaces. Elevators are more common, wheelchair ramps are an everyday sight, and public transportation is a more practical opportunity for people with disabilities than ever before. Technological advances have also made private transportation more obtainable.

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