The Braille Monitor January, 2004
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by John Jay Frank
John Jay Frank, Ph.D., CRC, LPC
From the Editor: Three years ago Dr. John Frank requested reader assistance with the research for his doctoral dissertation. A number of you stepped in to help, and now he has provided us with a summary of that research. He is a research scientist at the Rehabilitation Research and Training Center on Blindness and Low Vision at Mississippi State University.
The Americans with Disabilities Act (ADA) is something of a two-edged sword. Some disabled people have begun using it as an excuse for expecting others to do for them what they find it irksome to do for themselves, even when that would be appropriate. But the ADA is the law of the land, and the access it is supposed to provide often does not materialize. The following analysis of a tiny piece of the ADA picture provides an interesting illustration:
The Braille Monitor published a request for research volunteers in February of 2000. My dissertation centered on problems encountered with employment-related requests for print-access accommodation under the Americans with Disabilities Act (ADA). An earlier research study I conducted focused on requests for large print. This time most of the informants used Braille or audio formats to access print information.
I conducted interviews in the fall of 2002. The twenty informants ranged in age from thirty-seven to sixty-four. Sixteen were college-educated professionals; four were unemployed. All the stories were of requests for access to print information made after 1994; they were reasonable and were made to entities covered by the law. The issue I was concerned with was people's reasons for avoiding requesting accommodation. I revealed that focus in my second set of interviews when I called the informants back to check the accuracy of the initial interviews.
My research did not look for barriers to employment. We already know lack of access to print information is a barrier. Rather this research sought (1) barriers within the ADA request process and (2) the way these affected the people who encountered them. A qualitative interview study can describe a phenomenon, but it cannot determine if it is widespread. Readers will have to consider whether these barriers to requests and the responses to those barriers fall within their own experience, thereby suggesting the prevalence of the findings.
A request for access to print for an employment interview or on a job are not the only areas covered by the ADA that aid employment. Access to print information in many areas is needed. Below is a brief summary of my findings. I found a minimum of three examples for each of the areas described and for each of the six major themes that emerged from those findings. Barriers were revealed in the following twelve areas where requests for accommodation were made:
1. School and Training. Even programs in rehabilitation failed to provide access.
2. Tests, Licenses and Certification. Some state governments and private national agencies refused to provide alternate formats.
3. The Search for Employment. Newspapers and reader services refused access. Professional organizations refused to provide their journals and newsletters in alternate formats. These all contain employment information.
4. Contact with Prospective Employers. Various telephone services and the United States Post Office refused to provide access to their services.
5. Travel to the Employment Site. This included bus and para-transit services, airports, and information for pedestrians. Requests for alternate formats for information concerning those services were denied or delayed.
6. Access to Stores, Hotels, and Restaurants. People who must use those services as part of their employment or as part of a job search were denied access or told they had access when they did not and at times were humiliated in the request process.
After a person had a job, we found the following barriers in requests for access to print.
7. Printed Material Given to All Employees. Printed materials such as information about employee benefits and rules; and insurance, tax, and payroll information were requested in alternate formats but not provided.
8.and 9. Access to a Bank and Access for Bill Paying were both denied. This is how a paycheck is used and is a reason for working. It allows an employee to continue working.
10. Continuing Education, which many jobs provide or require, was not made accessible.
11. Using Computers. Training on new programs or equipment and information on new products were requested, but not provided. Finally, in the face of all these barriers,
12. The Complaint Process turned out to be ineffectual. Filing complaints after being denied access was a full-time, frustrating, futile, and even dangerous job.
I further analyzed the multiple stories that fell into these twelve areas and found the following six themes:
First, Broken Trust and Betrayal. The most offensive barriers to accommodation requests came from organizations that were expected to know and care about the needs of people with severe disabilities. These included independent living centers, state vocational rehabilitation agencies, university disability counselors, a consumer blindness advocacy organization, and the agencies charged with the enforcement of laws designed to protect the rights of people with severe disabilities at the city, county, state, and national levels.
Entities that are required to accommodate but do not are ignorant or unlawful or both. Their illegal behavior is simply the normal, everyday variety of discrimination. When the entities that know better or are specifically responsible for providing accommodation or for protecting the rights of people with disabilities refuse, resist, or obstruct requests for accommodation, their actions constitute broken trust and betrayal. Such an offense becomes a major reason to avoid requesting even essential ADA accommodations.
The second major theme is the Multiplicity of Barriers. Describing each obstacle to an accommodation request invites attempts to repair the ADA request process one problem at a time or on a case-by-case basis. That process itself is a barrier. The sheer number of barriers that can be dissected for a simple ADA request makes avoidance of making requests the preferable choice. For example, multiple printed materials must be made accessible, multiple steps be taken for each one, and multiple people contacted at various sources, expecting to be trained by the requester. A blind person has multiple types of accommodation to choose from.
Multiple problems may emerge for each of the above steps, requiring that the requester come up with multiple solutions. Any one of a multitude of changes requested may cascade into a multitude of additional changes of things that might be better left undisturbed. Further, requests invite multiple opinions from the people to whom the request is made. They comment about the need, the accommodation, blindness, the requester, and the ADA. Such comments may be irrelevant to the initial purpose of the request, which then gets lost amid this multiplicity of barriers.
The purpose of a request for print access is not to get print access or to pay attention to the process or to collect opinions about the process. The purpose or goal is to use the information in some way, just as everybody else uses print information. The multiplicity of barriers obscures or interferes with that goal. It may be preferable to avoid requesting ADA accommodation in order to accomplish the original task in a less cumbersome way.
The next major theme was Fear of Retaliation. The most severe example was of the requester's house being shot into after the person brought state government witnesses in to observe an entity's refusal to provide alternate formats. Other examples included fear that materials such as state applications or U.S. mail would be deliberately lost, fear of being sued, or fear of inviting the boss's or coworkers' anger. The informants understood that the redress processes designed to protect them (both that of government agencies and courts) were ineffective and often a waste of time, although one informant was successful with complaints because of his very aggressive approach. Again, all the themes refer to problems in the ADA request process, not just to barriers that have always existed.
The fourth major themeProblems with Technologyis in itself nothing new, but for this study the barrier occurred in the failure to provide requested alternate formats for training, repairs, and upgrades.
The fifth theme was unanticipated by the researcher, who has a lifelong severe visual impairment but still uses large print. This study found that the Concept of Print is different for some people who have never seen print. Some informants thought Braille was a print issue but did not see computers as a print issue, and they did not think that audible traffic control devices and calling out bus stops (which are accessed by mechanical or human readers) were an access-to-print issue. This highlights the fact that ADA requests are likely to be made only for things that are known or recognized as both helpful and covered by the law.
The final major theme was that, given these obstacles, some people resorted to habit to fulfill their needs. They avoided using the ADA request process and instead relied on the processes they have learned that do work, such as their own volunteers' providing access to information. Another habit is to do without the access the ADA has promised but does not yet deliver.
Informants avoided the ADA request process because of the barriers they encountered invoking it. They were taught by those barriers not to make requests. The most successful avoidance was to avoid the official ADA process and go to the top, to a better source. Some of the successful means were to go to the director of a firm or the dean of a school, to create negative newspaper publicity, to contact politicians, to use personal friends who are technology experts, or to use mass political action. However, such means are not desired by or available to everyone. A cost/benefit analysis of the ADA-accommodation-request process must include its cost to people with disabilities who make and pursue requests.
Some professionals in the rehabilitation field have suggested that problems with the ADA request process indicate a need to teach people with disabilities how to request ADA accommodation. That implies that disability discrimination is due to our lack of knowledge. This was clearly not the case for these informants. The covered entities, including state and local governments, refused and obstructed equality of access.
Today the courts are denying the need for the ADA, and advocacy efforts often progress piecemeal. It is important to record the disability discrimination experienced within the process of the law in order to discover where attention needs to be directed. This study of twenty blind people cannot speak for the millions of people with disabilities in our country who may face similar obstacles, but it points the way to needed research.
I believe we no longer need to collect and discuss opinions about the ADA and its effects. What is needed is to collect information on actual ADA behaviors and why they occurred. The questions that survey researchers should ask are the following: What was requested and what was the response? What was received? If an accommodation was provided, was it effective? Such research should involve people with disabilities who are obviously covered by the law making requests to obviously covered entities of things that are obviously reasonable. This will begin the process of monitoring the implementation of the ADA. A crucial area to record is the effect the law is having on people who are covered by the ADA who attempt to use it. The ADA is teaching some people that they are not wanted, not because they are blind, which was the pre-ADA reason for devaluing us, but because their civil right as an American to equality of access is not sufficiently valued.
I finished the dissertation project and earned the doctor of philosophy degree from Syracuse University. Many thanks to the NFB, the Braille Monitor, and the volunteers who made this research possible.
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