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Barriers to the accommodation request process of the Americans With Disabilities Act.

The Americans With Disabilities Act (ADA) of 1990 is "An Act to establish a clear and comprehensive prohibition of discrimination on the basis of disability" (Preamble, ADA, 1990). One definition of disability discrimination given in the law is the failure to provide accommodation (ADA, 1990). The Equal Employment Opportunity Commission (EEOC; 1999) called the accommodation request process a fundamental feature of the ADA. The ADA does not mandate employment, it prohibits discrimination.

Research into the employment goals of the law makes the assumption that the ADA accommodation request process is viable (DeLeire, 2000; Moon, Chung, & Yang, 2003; Stapleton & Burkhauser, 2003, Wells, 2001). These studies, some using the same data sources, generate opposing answers on the ADA's impact on employment all the while ignoring the fundamental request process of the ADA. Other research looks into the behaviors of entities covered by the law, but these may not be relevant to the ADA's goals. For example, Bruyere (1999) surveyed 1,402 human resource departments on their preparedness to accommodate and reported that most said they were making changes. However, there was no way of knowing from that study whether the changes were initiated by, or even affected employees and/or job seekers with disabilities. Hernandez, Keys, and Balcazar's (2000; 2004) indicated that employers and representatives of the private and public sector express positive attitudes about the employment and access rights of workers with disabilities, but their behaviors may not match their attitudes. Relevant ADA behaviors have not been researched.

The meaning of the attitudes and opinions of people with disabilities in terms of their actual behaviors and the effect of ADA is also unclear. People with disabilities know about the law and are in favor of it (NOD/Harris, 2000; 2002), and some think it has not accomplished much (Hinton, 2003; NOD/Harris, 2004). The National Council On Disability's (NCD) (1995) collection of testimonies from people with disabilities affirmed the well known benefit of receiving accommodations. However, the NCD study did not describe the ADA request process in light of disability discrimination, that is, the refusal to accommodate. The functional impact of the law--the behaviors of the people who could make ADA requests and those who receive ADA requests is not known.

When the ADA complaint processes are used they are not effectual means of acquiring accommodation. In a comprehensive study of all ADA EEOC employment discrimination charges (N = 149,143) between July, 1992 and September, 2000, Moss, Burris, Ullman, Johnsen, and Swanson (2001) found that most complaints were rejected and that when a complaint was accepted, the person with the disability lost most of the time. Furthermore, Moss et al. found that the result of a fully processed EEOC complaint, win or lose, was most often simply a letter to the complainant. The authors concluded that the EEOC complaint process is ineffectual, and noted, "Aside from a chance to tell their stories, most claimants will not benefit from filing a claim." Colker (2000) reviewed ADA litigation and concluded that covered entities knew it was highly unlikely that they would ever face any enforcement action for noncompliance.

Sullivan (2001) found the major reason people charging disability discrimination lost their litigation was because of a breakdown in the negotiation process whereby an employee and an employer discuss what accommodation is needed. He noted the ways employees were blamed for contributing to that breakdown but wrote that the ways employers affected that breakdown were too varied to list. In contrast, Harlan, and Robert (1998) listed some of the ways employers effect the request for accommodation process. They labeled these tactics "employer resistance strategies." These included generating fear of reprisal, giving misinformation, pejorative labeling of requesters as "lazy" or "trouble makers," and telling requesters accommodations would take a long time to arrive and would be of poor quality. Informants in the Harlan and Robert study said they did not request accommodation because they feared reprisals such as being fired, or passed over for promotion. Intimidation, rather than outright refusal followed by a redress process is a means some employers use to avoid fulfilling ADA requests.

Harlan and Robert (1998) found that professionals and managers with disabilities did not negotiate for accommodations. At that level, accommodations were a perquisite of the position. At the entrance level, Hauser, Maxwell-McCaw, Leigh, and Gutman (2000) found a blanket refusal to accommodate or hire Ph.D. clinical psychology interns who are deaf or hard of hearing. Some of McNeal, Somerville, and Wilson's (1999) informants with post polio syndrome did not make requests out of fear of being fired.

Another impairment that is specifically mentioned in the law is visual impairment. However, instead of examining disability discrimination against people who are blind in the accommodation request process, the literature focuses on their assumed deficits. The Director of the National Eye Institute, Dr. Carl Kupfer, launched an education campaign saying "The major problem is that people with low vision do not seek help." (National Eye Institute, 2000). They were the problem. Rumrill (2001) wrote that the major problems with the ADA were that people who are blind lacked knowledge of what to request, and the limits of their rights, and skills for effective communication. Such opinions, in effect, blame people with disabilities for the discrimination they experience.

Rubin and Roessler (2001) observed that it is common for rehabilitation professionals to "blame the client," that is, to locate the reasons for disability or failures within the person with an impairment rather than as a result of the created environment. This may be due to the fundamental attribution error, or the actor-observer effect (Jones & Nisbett, 1972). The actor-observer effect is the tendency for observers to credit the behavior of others to personality factors within those others, and for actors to credit their own behavior to situational factors. Whatever the reason for the bias in the literature, deficits within people with disabilities are not the discrimination prohibited by the ADA. There are several participants to an ADA request situation: the requester, the covered entity that receives a request, and third party observers or helpers.

The purpose of this research was to examine the ADA, employment-related, accommodation request process. Rather than reiterate the fact that accommodations are easy to provide and valuable or essential for people with severe impairments, this study reveals the difficulties individuals encountered with the accommodation request process. The experiences of individuals whom the ADA intended to protect can inform discussions on the law's implementation by describing how disability discrimination functions. This research approach can help guide the work of rehabilitation professionals and it can empower the choices of people with severe impairments who encounter a disabling environment.

Method

A qualitative interview method was employed in this detailed study of ADA accommodation requests (Weiss, 1994). This follows Greene's (2000) suggestion to use qualitative research methods to evaluate social programs and policy.

Informants

An ideal source, in order to avoid debate over whom or what the ADA covers, are people with the disability types mentioned in the law, (those who are deaf, or who use a wheelchair, or who are blind), who request obviously needed accommodations in uncontested situations. For this study, people who are blind were contacted. Informants were recruited through advertisements in the consumer magazines of two national blindness consumer groups. One volunteer was recruited by an informant who asked a friend to contact the interviewer (i.e., the first author). Key selection criteria in the purposive sampling for participants included the following: (a) presence of a severe visual impairment, (b) personal experience in requesting an employment-related accommodation for print access, (c) between the ages of 18 and 65, and (d) employed or seeking employment at the time the request(s) occurred. These criteria resulted in a group of informants for which accommodations are fairly straightforward.

The final sample consisted of 12 men and 8 women (n=20) who are blind. Ten informants were totally blind, three had only some light perception, and seven were legally blind, but had some functional vision. The informants' ages ranged from 37 to 65, with a mean age of 50.4. All informants reported that their racial background was European-American. Thus, this was not a diverse group in terms of age or race.

Six informants had high school diplomas and/or additional trade school following high school, seven had earned Bachelors degrees, six had Masters degrees, and one had earned two Masters degrees. Fourteen informants were employed at the time of the interviews and four were unemployed. Two informants were recently retired from long-term employment. The informants' employment experience ranged from 6 to 28 years, with last reported income from employment ranging from $2,000 to $75,000 per year. The volunteers warrant what Borg and Gall (1989) call "maximum confidence" due to their level of education, commitment to the issue being investigated, and their high level of social involvement. The names used in presenting the data are all fictitious.

Data Collection and Analysis

The in-depth and follow-up interviews were conducted by telephone by the first author and tape recorded with the consent of the informants. The telephone interview was the best approach to ensure participation for persons located throughout the United States who have a severe visual impairment. In addition, the telephone interview facilitated the work of the first author who has a severe visual impairment. The initial interviews occurred in a three-month time frame. The interview summaries and themes were shared with the informants in follow-up interviews conducted after data analysis. The informants indicated that the material was summarized accurately and that the researcher accurately represented the phenomena and the informants' intent.

A general interview guide was used in which the order and wording were not predetermined, but were allowed to flow as each interview evolved (Gall, Borg, & Gall, 1996; Weiss, 1994). Initial interviews took between 45 and 90 minutes. The informants were encouraged to continue describing their ADA request experiences until they had discussed everything on the topic of interest to them. Following each interview, the tapes were transcribed and the data were summarized and coded. The interviewer (the first author) created an audit trail by recording his impressions during and subsequent to each interview. Analysis of the initial interviews included editing and summarizing codes by connecting and organizing similar ideas within and across informants' stories. The codes were displayed along an hypothetical employment process of school, job search, travel to work, work, continuing education, and using a paycheck. Emergent theme analysis (Miles & Huberman, 1996; Weiss, 1994) was applied to the displayed codes. Each theme identified was supported by at least three excerpts from the data. Coded excerpts of each interview and the themes were reviewed by a panel of experts selected for their expertise in rehabilitation counseling and research. The study's credibility was enhanced by use of multiple sources, member checking, a panel of experts, an outside reader, an audit trail, and by the insider status of the researcher.

The analysis was based solely on the informants' evaluation of the individuals or entities approached. For example, a statement "The telephone company was trying to discourage people from applying for accommodation in order to save money" was chosen as an example of a barrier to requests because of the informant's estimation of the entity's motive. Whether the phone company's process of periodically halting free directory assistance to long-term customers who are blind was legal, or was intentionally designed to discourage requests, or was done in order to save money, or occurred for some other reason was not examined in this study.

Contexts

The informants told of making requests for print access at various times between 1994 and 2002. Informants made requests to covered entities when they were students of state colleges, and when seeking professional certification and licensing from states and from private national organizations. Informants made requests as customers and as employees of private businesses, medical facilities, and state rehabilitation services and other government offices. Employment-related requests for accommodations were also made when frequenting restaurants, hotels, stores, banks and as members of national professional organizations. The accommodations requested included Braille, readers, audio and digital recording, assistive technology (AT) (e.g., a Closed Circuit Tv, a Braille Note) and adaptive computer equipment (e.g., ZoomText, an Alva Brailler) and training in the use of the AT. Two people requested large print.

Results

Seven themes emerged that describe the informants' experience within the ADA accommodation request process. The first theme--Betrayal and Broken Trust--describes what the informants regarded as the worst barriers to accommodation requests. The second theme--Multiplicity of Barriers--refers to the overall aversive effect of facing a multitude of barriers to the request process. The third theme--Fear of Retaliation--expresses the power of discrimination. The next two themes--Problems with Technology and the Concept of Print--describe new knowledge barriers leading to incomplete or no accommodation, and the last two themes--Habit--and--Successful Means of Acquiring Accommodation--describe alternate techniques utilized by the informants because of barriers in the ADA request process. Each theme will be discussed in turn. The informants' reactions provide insight on the ADA request process and disability discrimination. Fictitious names are used to indicate different speakers.

Broken Trust and Betrayal

The significance of the first theme was indicated by the informants' choice of stories to share and by their introducing these stories with expressions such as, "The worst one was ...," or "My worst experience was...." The failure to remove barriers to print access is a daily experience for many people with severe visual impairment. Fred Garland, an Occupational Therapist, in referring to his expectation of common, ordinary discrimination, stated: "This is typical, this is my everyday life." Everyday discrimination was expressed with a sort of vocal shrug, as if to say, "That always happens, it's not news." Broken Trust and Betrayal was distinguished from common discrimination by an indication that the situation was grievously out of the ordinary. Hence, this theme reflects the perception of extraordinary discrimination in the ADA request process.

Betrayal means "To disappoint the hopes and expectations of, to be disloyal to, to betray one's friends" (Webster's Unabridged Dictionary, 1996). This theme expresses informants' experiences with three types of help-givers who were perceived to have failed to fulfill their institutional role. These were entities who were (a) presumed to have superior knowledge of the ADA and the needs of people with severe disabilities, (b) were entrusted to work with people who needed accommodations, and who were (c) given special responsibility to facilitate the request process, or find solutions to barriers.. Table 1 lists the entities that informants assumed should be better at accommodating than other entities covered by the law, but who failed their special charge.

The refusal to help by these three types of help-givers, or worse, opposition from these sources, created the greatest affront to the informants. Pressman and Wildavsky noted, concerning the implementation of a policy, "Promises can create hope, but unfulfilled promises can lead to disillusionment and frustration" (1973, pg. 6). The theme Broken Trust and Betrayal is more than disillusionment at a general failure to implement the ADA, it is a response to a betrayal of a special level of trust.

Stacey Trace noted that the local Independent Living Center (ILC) would not provide Brailled material to her:
 I was on their board. They say there's not enough need for
 Braille, so they don't do it. It makes me angry, they of all
 organizations should be doing it.


ILC's are organizations of people with severe disabilities, established to help other people with disabilities because of the presumed special awareness and sensitivity of peers. Stacey assumed they would provide the accommodation she needed, based on the ILC philosophy and mission, but they did not.

Fred Garland, epitomized this theme when he said, "I couldn't even get print accommodation and I'm getting a degree in Rehabilitation!" It was a rehabilitation program that repeatedly failed to provide accommodation and made his course work more difficult. The people who taught about helping people with disabilities, and were paid to do that work, were not complying with the ADA. That made the affront grievous. Larry Mattel was upset at the refusal of a blindness consumer organization to give him access to its free newspaper reader service. He emphasized that this was in opposition to the stated intention of that group's leader that the reader service would be available to all people who are blind, not just its own members. Henry Inkle's ire was directed at the National Library Service (NLS), which is the source for much of the reading material available to people who are blind. The NLS provided him several magazines in Braille, but discontinued some that he still wanted. He did not try to get these in Braille from the publishers, who arguably were responsible to provide access. Rather, his complaint was directed at NLS because this organization had been established to provide that service. He felt they did not understand the needs of a person who is both deaf and blind who cannot listen to tapes, but who can read Braille.

Informants had a tacit understanding that there are gradients of culpability for entities that is based on a presumption of capability and intention to help people with severe disabilities. When these assumed expert entities failed to fulfill a request, or failed to facilitate the accommodation process, the informants experienced this as a betrayal of trust. The informants regarded barriers in organizations that are charged with the helping role as broken promises, not just illegal actions. When those sources of help resisted requests, and attacked or added burdens to the requester, informants reported that they felt both betrayed and demeaned. According to Irene Jenkins:
 The university disability counselor first said they couldn't
 photocopy my textbooks because it was against copyright
 law. Then he said the school couldn't afford to enlarge the
 texts. He tried to make me pay for it. Then he attacked me.
 He berated me for not assisting with enlargements. He was
 screaming at me. I would classify that as harassment and a
 hostile environment. He was nasty and belligerent. He said,
 "How dare you come in here and demand accommodation."
 It was a nightmare. I was ready to quit. I heard later from
 my VR counselor, that this sort of thing is common.


Irene's state vocational rehabilitation (VR) counselor told her that abusive behavior toward students with disabilities who request accommodations was common at universities. The counselor confirmed Irene's experience, framed the issue as a normal problem, not the fault of her behaviors, and congratulated Irene on her fortitude in enduring the abuse, unlike others who simply quit. The VR counselor had advised her to request accommodation knowing the request might not be well received by the university. She shared this with Irene after the fact. In 1998, Ms. Jenkins was thrust into a battleground with no preparation other than the statement that she had the right under the ADA to request that the school put her texts into alternate formats. Today, Certified Rehabilitation Counselors (CRC) need to inform their clients of both the limitations and the risks of a course of action they recommend (Blackwell & Patterson, 2003).

The failure of a VR counselor to provide complete access to a state rehabilitation services contract was a costly omission for a Braille instructor. As Ms. King stated:
 My VR counselor read very little of the state contract to me.
 She did not read me the part that said you don't get
 additional travel expense beyond the amount that you bid
 for teaching. My counselor helped me fill it out. She said,
 "You should bid low" We put in $20 dollars an hour. Across
 the state the average was $70. My driver earned more than I
 did. I paid $7 an hour for my driver and 30 cents a mile.
 That year the driver made $8,000 and I made $5,000.


Bob Cole considered the refusal of his local telephone company to Braille his bill to be a typical barrier to print access. He engaged that battle. His outrage came after the representative for the state Human Rights Department informed him that, although his case had merit, the agency would not get involved because the case was too small. Mr. Cole said the issue was dollars, not the harm being done by discrimination. He understood that the state agency was labeling him "insignificant." As Mr. Cole noted:
 The state is ignoring the fact that I am hurt by not having
 equal access. Unless you have some egregious kind of harm,
 nobody is going to spend resources to settle your complaint.
 It's worth going through the effort once, but it is not worth
 it when your own State Human Rights Department says
 you've got a case but they're not going to do anything about
 it. It is not about what the ADA was set up to do. It never
 will be. It's about dollars.


The informants learned that the entities charged with facilitating accommodation on behalf of persons with disabilities could not be counted on to help them receive their civil right to equal access. The informants experienced this as broken trust and betrayal, as well as humiliation. These experiences were powerful teachers because they came from individuals and institutions charged with working with people with disabilities. George Hunter, a social worker, asked: "Why do I have to be made to feel that I am inadequate because I need accommodations?" Bob Cole said, "Based on what happened with the Phone Company, why go on and complain about my job? Who would trust them (the state Human Rights Department) to help?" The experience of broken trust and betrayal was deeply disempowering to the informants. It made them reluctant to make requests for accommodations in the future or participate in future activities, such as employment, and, in some cases led to disengagement from current situations. The ADA was designed to protect persons with disabilities. These informants perceived themselves to be harmed, not because of their disability, but rather because of the barriers in the accommodation request process--and by people they trusted.

The Multiplicity of Barriers

It is common in the pursuit of goals to encounter problems and confusion that require perseverance. Any one of the obstacles that make up this theme might not be a severe problem and corrections can be found. However, the unexpected multitude of problems in effect, blocked requests and progress toward goals. Pressman and Wildavsky (1973) asserted that the implementation of a new policy is a process of exploration. The sheer number and repetition of explorations needed by the informants to overcome obstacles constituted a major barrier to ADA requests. Table 2 lists the multitude of barriers informants encountered in requesting accommodations.

An oxymoron can help explain this theme. For persons with disabilities, the purpose of a request for print access is not to obtain access to print. The fundamental purpose of a request for access to print is to use the information to accomplish a task. A bus schedule is needed to plan to use the bus to travel to accomplish something, such as working, and to return. Medical insurance information is needed to access medical services. Access to textbooks is needed to use the information in the text. Those are the real, instrumental goals behind the request. A perfected print access process is not the goal of requesting print access. The effort required of the informants, by the request process was exhausting and distracted from the real instrumental goals of the request.

Failure to accommodate occurred via multiple subtle ways under a guise of good intention, care, and concern. In some cases failure was attributed to ignorance, even though ignorance of the ADA is a violation of the law. An entity may have policies on adherence to the ADA, but convoluted procedures or the unregulated behavior of the officers of the entity can deflect and delay fulfillment of requests. Actual refusal does not take place in those cases. Discrimination appears deniable, or barriers disappear when challenged so that compliance occurs before legal sanctions can be applied. The informants interpreted this as deliberate obstruction. Mike Nettles noted:
 They set up so many hoops to jump through that I believe
 they were really trying to discourage people from applying
 for accommodation. I firmly believe that because after I
 threatened a lawsuit they did accommodate.


Innuendo or repeated questioning may be all that is necessary for a covered entity to deflect accommodation requests. Keith Lane described an innuendo barrier:
 The manager made a hypothetical statement, "If it isn't
 achievable or reasonable, it is not required by ADA and it
 would be judged by our agency to be too costly to put it into
 accessible format." He never said it was an undue hardship.
 He never put anything in writing. I never pushed the request
 and I never received a wage statement in accessible format.


One informant used the expression "all this rigmarole," to describe the multitude of barriers. Carol Davis expressed this theme as "the runaround:"
 Everybody gives me the runaround. I would like a specific
 place to go to make accommodation requests, where you
 can actually get a response from somebody.


Stacey Trace referred to this phenomenon as "foot-dragging:"
 It's a terrible fight, My supervisor delayed getting me a new
 computer with a year of foot-dragging. I was so angry. I was
 almost in tears. I was so upset, I said, "I do not need all this
 frustration and emotional stress."


The ADA requires that covered entities provide reasonable accommodations in a timely manner. Multiple barriers are time-consuming, frustrating, and emotionally draining. They teach people to not request accommodation. Multiple accommodations may be needed to accomplish a goal, or the same request may have to be repeated multiple times to the same entity for the same thing, such as for each daily, weekly or monthly update of the same type of print information.

Wendy Xeral's story juxtaposes two accommodations. She needed to use public paratransit service, but in order to accomplish this task, she first needed to access the time schedule. The transit service offered several alternate formats for this information, and she specified that she wanted Braille. The transit service sent her print information rather than Braille. In a subsequent conversation she was again asked to choose the kind of alternate format she wanted, despite the fact that she was clearly offered and clearly indicated that she needed Braille. The entity did not rescind its offer, Ms. Xeral was simply required to ask again. The redundant invitation to discuss "the problem," to figure out what to do, or how to do it, or find out who to ask, was an aversive process. Wendy noted that this was a common experience. She interpreted it as indicating the entity's reluctance to grant the accommodation they offered her and that she requested.
 It's always having to make these phone calls, about this,
 that, and the other thing. I have other situations that I have
 to follow up on. How many of these do you want to do in
 one day? You go through the process, and if successful, you
 may get a page or two in an alternate format. Then in a day,
 a week, or a month, you have to go through the whole
 process again, with the same people or someone new at the
 same place.


There may be circumstances where the type and process of accommodation requires exploration, but this is an odious barrier in situations where the product and process are straightforward and even offered. The goals of access remain unfulfilled. The informants understood that non-compliance occurred by deflection, instead of by outright refusal. Rather than address each complication in turn, informants preferred to by-pass the request process, to aim their efforts at accomplishing the task the accommodation was supposed to facilitate. Multiple barriers interfere with life.

The barriers in this theme should not be misunderstood as suggesting a need for more education. The entity's lack of knowledge is not what the informants reported. The informants felt that covered entities simulated a step-by-step, case-by-case process suggested by federal guidelines (EEOC/DOJ, 1992) in order to create a discouraging wall of complications. The requesters were exposed to the cares, concerns, and reactions of the entities. They felt that the entities did this deliberately so as to avoid accommodating or providing a precedent or clear process. Keith Lane noted:
 My requests were handled in a case by case manner with
 hassles and negative responses. They made it sound like I
 was a bother to them. I felt I had pushed the envelope
 enough. They just didn't want to be bothered.


Another way this occurred was by the need for additional solutions to problems in the accommodation process after a particular format was agreed to. Olive Pine, a psychologist, requested Brailled case files and her employer agreed to provide them.
 I'm a Psychologist. I requested clients' information in
 Braille for privacy, They were willing in principle, but
 didn't have equipment to do it so they sent it to another
 office. In that office, their transcriber was down, and it
 became a big deal. I got as much information as I could
 over the phone.


Ms. Pine was not refused the accommodation. Her employer agreed to provide the client files in Braille. It was not provided in a timely or confidential manner so that Ms. Pine could accomplish the instrumental tasks associated with her employment. Ms. Pine found agreement, then a problem, then a solution, then a problem, and she was required to be involved with each step in this circuitous process if she hoped to finally receive the straightforward accommodation that was requested. Faced with these complications, her solution was to avoid the process and accomplish her task using means that were less independent and less preferred, but were at least available.

Keith Lane described incomplete accommodation. He asked for and received an Alva Braille Display for his computer, but it does not work. He said it just needs a new driver, a software program to make it work with his computer. Keith, however, uses the old Windows 95, because all his assistive technology (AT) devices and related software are compatible with that version. However, finding and installing the associated driver will take time and might require a newer system or more computer memory, that in turn, might require changes to other AT devices he uses on his computer. Mr. Lane is not willing to take the time for all the tasks needed because, he said, "I have work to do."

George Hunter expressed the long-term effects of battling through the multiple complications associated with requests: "I don't have the energy to be going through all of this. Life is too short." Stacey Trace noted: "There's only so much energy you have. After you lose it, there's only so much you can do." Nick Olsten and Fred Garland both said "you need to pick your battles." "Battles" are multiple, concurrent, and consecutive.

According to Schneider (1982), the implementation stage of a new policy is the process that begins after it is adopted and before the routinization of activities. The end of the implementation stage is when the activities, operations, and tasks of a new policy become routine. The processes for creating alternate formats for print (e.g., Braille, large print, audio recording) are well established and routine, as are the processes for gathering information on how to accommodate (e.g., calling DBTACs, or State VR services). If an ADA request suggests that entities can or must open a Pandora's box of choices as part of a case-by-case decision, then delays and apologies become the routine. As long as the operations, tasks, and activities associated with requests for common accommodations never become routine, the ADA is not, and never will be fully implemented. Instead of equal access becoming normal, a case-by-case focus on a problem becomes the routine. Instead of the needs of people with disabilities being the focus or measure of the ADA's implementation, the focus is on technique.

Fear of Retaliation

This theme describes the power of disability discrimination. Violent attacks took place in earlier civil rights struggles and stories of physical and mental abuse are part of the history of disability discrimination and the mistreatment of persons with disabilities. The informants' stories of retaliation in the context of the ADA process designed to eliminate discrimination toward persons with disabilities is thus, both ironic and deja-vu.

The retaliation described by informants ranged from economic reprisal to physical assault. Gunshots fired into Quincy Right's home was the most striking case.
 It is dangerous to make waves in a small town. We had our
 house shot into the day after we went with witnesses into
 the town Municipal Building to request print access. We
 heard POP, POP, now we have bullet holes in the house.
 Nobody was hurt, but it shook us up. We aren't requesting
 accommodation or filing a complaint because of fear and
 intimidation.


Quincy Right was advised by a consumer advocacy group to file an ADA complaint to address this concern. He stated, "Filing a complaint would simply make us martyrs."

Informants learned that the ADA complaint process would not be effective and that relationships with others would be strained if they did complain. Bob Cole noted:
 If my own human rights department won't help me, what
 chance do I have? And even if I win it, what do I win. I
 might get what I requested, OK, but I also win the
 animosity of my boss and then be open to retaliation.


Stacey Trace described what she learned from the retaliation she experienced.
 One result of going over my supervisor's head was that she
 was very hard on me. She let me know she wasn't going to
 train me. I would have to look at why I would pursue
 accommodation or discrimination charges. It makes it better
 for other people, but at what expense or cost to me?


Nick Olsten feared retaliation if he filed complaints against the state government for not providing accommodation, both against his application for professional certification for himself, and for the license required to operate his business.
 For my business, I believe retaliation would be the result.
 I've seen it with others, or more precisely I've seen what
 seems to be retaliation. It is very tough to prove. Retaliation
 can be subtle, like "We lost your application, you'll have to
 resubmit it." I am not going to press an ADA claim because
 of my well founded belief that retaliation would take place.


Mike Nettles stated:
 No one uses the ADA redress process. If you make a
 problem of yourself, people begin to resent you. You know,
 the backlash thing.


Fred Garland was reluctant to request an accommodation from a new employer because he had lost a good job as a result of making a request:
 It took a year, I won my case, but lost the job. I won't ask
 an employer to pay $3,000 for a CCTV, because they'd just
 go and hire someone else.

 He also feared retaliation from employment-related services.

 She (the postal worker) might lose my mail if I pressed the
 issue of having her fill in the small print forms.


Title V of the ADA forbids retaliation against a person for requesting accommodation or for filing a complaint. The informants did not believe they were protected from retaliation. Wolfensberger (1997) felt that some kinds of assertiveness training for people with severe disabilities is "deathmaking," because people in power would not put up with the demand for social justice by people with little or no power. The informants' experiences with accommodation requests bears this out.

Problems with Technology

The focus of this theme is on requests for information that is available in print to sighted individuals and that is needed in order to access computers. Computers allow access to information for people who are blind through synthesized speech, Braille display, or screen enlargement, but access to computer technology typically requires some sight. Bob Cole shared that:
 They still haven't taught me how to use the new computer
 programs at work. Sighted people pick those programs up
 on their own with about a half day training by looking at
 pictures. I requested accommodation over four months ago.
 I follow-up and ask my boss every week. I'm only doing
 half the job I should, everybody around me has to pick up
 the slack. My coworkers are upset because I'm not carrying
 my share of the load.


Bob Cole told the technician on the computer company's telephone support line that he was blind and he very carefully asked if the new computer he was using would open up to Windows after it was put together, plugged in, and turned on. He was assured the computer would boot right up to MS Windows XP. Bob assumed that he could then load the software for his assistive technology, which he knew how to do.
 Those people were dumbfounded when they had to describe
 things to me that others use pictures for. They didn't realize
 those steps were there. You have to choose your language,
 you have to choose this, that, and the other thing. Rather
 than waiting days for someone from the computer company
 to get back to me, I found somebody here to look at the
 screen.


Ursela Vidal, a rehabilitation teacher with a state VR agency for the blind, learned about a BrailleNote note-taker that would facilitate her work. Ursela said, "I had to discover what I need myself. Keeping up with the latest computer programs isn't easy." She had to justify her requests to an employer who is more knowledgeable about assistive technology issues than she is, and yet her employer did not inform her about the best equipment available. (Note: a BrailleNote costs $5,000.) When she needed assistance with the new product, she was required to use the employer's technicians. They then told her what she already knew, that she needed outside specialized help.

Fred Garland found that ZoomText, the AT he needed, was available in his local college libraries and in a local private agency for the blind. However, nobody took the time to learn how to load it into a computer or teach him to use that easy to load and learn program. After graduating from school he found and read the large print manual for ZoomText and taught others to use this software, part-time, for $7 an hour.

Variations found with this theme are that problems with technology can include having too much equipment as well as too little, and equipment may be either too new or too old. Carol Davis was upset because she was given new technology that was not as user-friendly as the old. In addition, Carol was embarrassed at the actions of a coworker who is blind who asked for all the technology he could get. She felt this gave blind people as a group a bad image by appearing too greedy. Crudden and Fireison (1997) noted that non-disabled coworkers resented what they perceive to be "special treatment" given to people who are blind, such as additional computer equipment or the larger office space needed due to the additional equipment. A new insight from this study is that people with severe disabilities can also contribute to social pressure to avoid asking for AT. This pressure impedes exploration of new AT.

The Concept of Print

Before any other barriers to requesting accommodation arise, there may be questions regarding what access is and why it is useful. Print and paper seem to go together, but that is not the only way print is used. For a person who has been blind since birth, the questions may be, "What is print to a person who has never seen print?"

Bob Cole said he knew the interview was about print access and apologized for digressing into a discussion of computer issues because, he said, "that's not print." Asking for something in Braille was a print issue to Bob. Two other informants said the same thing in regard to telling about their requests that bus drivers call out bus stops, in effect, that drivers read street signs out loud. The informants did not regard this as a print access issue. To them, it was a transportation issue. Another informant apologized for changing from print access to a discussion of audible traffic control devices, which he referred to as an orientation and mobility issue. An audible street light is a reading device for "Walk" and "Don't Walk" signs for pedestrians who are blind. These all were print access issues, but the informants did not conceptualize them that way.

This theme was unexpected. The first author has had low vision throughout his life. Although his visual impairment is now considered severe, he has always been able to use print. A person who has never had sight may not know what print is or what access to print can accomplish. The fundamental purpose of the ADA is thwarted when the conceptual issue of the nature of the potential access that can be requested is not addressed. In addition to knowledge of the products and the accommodations that are available, effective access requires knowledge of the range of uses available. If access only means using Braille as an alternative to printed information, the right to print is restricted to only requesting Braille. If people with disabilities retain this conceptual barrier, they have not learned all they need to know to ensure access that is as full and equal as possible. Training on the ADA must include the full range of options available and how and why and for what purpose these function. Further, if people with any disability are asked their opinions of the ADA accommodations they receive, when they do not know all their options, their answers are incomplete and may be misleading.

Habit

The final two themes represent strategies the informants used in the face of barriers in the ADA request process. Habit represents the respondents' strategies, developed over their life spans for accomplishing tasks despite blindness, but without the ADA. Some of these strategies included finding alternative means or people to help. It also means being unemployed, not working as efficiently or effectively as possible, and not being as involved in their communities as much as desired as a result of having limited access to printed information. Olive Pine's testimony illustrates this theme:
 I rarely thought to ask for material in Braille because no one
 ever talked about it, I'm so unaccustomed to having Braille
 available, that I'm used to living without information.
 Asking would actually be an inconvenience to me. I tried
 asking, but they didn't want to do it, so I just limped along.


Moreover, habits are not easy to break, even if the strategies used are not very effective, as Wendy Xeral indicates:
 I tried to switch over to alternate format for bill paying, but
 that didn't work out so I still work with a reader to pay bills.
 To some extent it's what you're accustomed to. We all make
 choices about what we do with our time. I know what I need
 to know to get along. Unless I'm really pushed into doing it,
 or it comes fairly readily, I don't do some things.


Janice King, a Braille instructor, said that when faced with a printed contract she should have demanded complete access via Braille, but she explained, "You get used to how things are. You get used to getting read at. So I didn't ask for any more." She is sometimes forced to use tried and proven methods even when she receives alternate formats from ADA-covered entities because they are not provided in a timely manner.
 Both my Braille utility bill and my Braille telephone bill
 arrive late. I have to have someone read me the print bills or
 else I will be late.


Habit can affect a particular way of doing things or it can impact a person's entire work involvement. David Edwards discussed his decision not to file a complaint he knew he could win. He felt settled in a job and did not want to begin a new routine in an environment that had already proved itself hostile, but that was also simply unfamiliar.
 I would have left a job where I'm appreciated and I'm
 reasonably secure and gone to work for somebody that I
 have to knock the door down to get in. I decided that at that
 stage of my life I wasn't going to work for them.


Mike Nettles noted that he maintains his job rather than look for a better one because the company provides all the accommodations he needed without his asking for more. He noted he had greater need for accommodation when he was younger.
 I stay where I am because this company provides what I
 need. I don't need to request accommodation all the time. I
 can take care of it myself. Most of the real problems that I
 faced with a lifetime disability were when I was younger.
 Now I have my own resources and knowledge for most
 things due to my age and the number of years I've been
 working.


Habit may be a reasonable and successful response to accommodation barriers, but habit may also be a barrier because it permits individuals to achieve less and settle for less than they might accept or aspire to under more optimal circumstances.

Successful Means of Acquiring Accommodation

Informants discovered that to get the accommodation they needed they had to bypass the ADA request process. This usually meant going over the head of the immediate person designated to handle a request, or else using the threat of going to a higher authority. For technology needs, one solution is to contact the experts yourself:
 Sometimes I bypass the process and go directly to the
 source, because I happen to know the source. If he can tell
 me what to do, without coming out here to do it, then I'll fix
 it myself. Otherwise, he has to wait to get a direct order to
 come and that could take days or weeks (Ursela Vidal).


Informants knew such strategies may not be well received by the person by-passed.
 I hate to step on her toes, because she's been good to me,
 but my supervisor won't help so I'm going to have to call
 the AT people at headquarters (Carol Davis).

 I went over my supervisor's head to get a new computer and
 now she gives me a hard time (Stacey Trace).


Discovering the need for, and the process of getting around barriers in the request process may be learned in school. For example, with student services:
 The disabilities counselor was blocking the way. After I
 went to the dean, everything cleared up (Irene Jenkins).

 I went to the department head and got what I needed
 (Fred Garland).


Threats of negative publicity or a lawsuit were considered more effective than the futile complaint approach.
 People who refuse to accommodate are the biggest criminals
 going. If they tried to fire me they'd be all over the media,
 which they don't want. They know I know who to contact,
 and the buttons to push; the right politicians. My complaints
 go right up the chain of command (Yve Zak).

 As soon as I asked them who to serve legal process on, they
 immediately found that they could somehow accommodate
 me. It took the threat of a lawsuit to do it (Mike Nettles).


Finally, this last testimony comes from a professional, an expert in mediation, in a high position of authority, who found that after promises were broken, the threat of street demonstrations was more effective than the official complaint process.
 My boss asked why I requested time off without pay. I said,
 The first day I'm going to sit home, the second day I'm
 going to call my Congressman and my two US Senators, the
 third day I'm going to go and talk to them. On the 4th day
 I'm going to organize a demonstration around this building
 with my friends from (a blindness advocacy consumer
 group). On the 5th day we're going to demonstrate. Do you
 need me to go into next week?" They settled the grievance
 the next morning. They purchased the $17,000 of equipment
 I specified and the training hours I needed (David Edwards).


This last approach was the type of action that led to the passage of the ADA. Now, many years later, for some people it still is a necessary and effective way to secure reasonable accommodation.

Discussion

The purpose of this research was to examine the ADA process of requesting reasonable accommodation. The experience of these informants contributes valuable data on the effectiveness of the ADA because their disability and the accommodations associated with their impairments are not controversial. Rather, this is a disability group for whom accommodations are (a) straightforward, (b) mentioned in the text of the ADA, (see http://www.usdoj.gov/crt/ada/pubs/ada.txt) and for this sample, (c) uncontested.

A key finding of the study is that, for these informants, the ADA request process was an ineffectual means of obtaining access to print that often carried unexpected and sometimes dire risks. The informants felt the entities deliberately created barriers that obstructed the accommodation process without resorting to a formal claim of undue hardship, or to claiming the request was inappropriate, or to challenging the need. Disability discrimination is not simply a matter of an entity turning down a reasonable request. The ADA was nullified without review due to various behaviors by the entities.

Barriers that interfere with progress toward their goals teach people that avoidance of the ADA request process is a preferable alternative. A person may accept less than optimal accommodation, may expend energy on more reliable means for obtaining a goal, or may revise the goal itself if the ADA process is perceived as a burden. This finding likely transcends blindness. These are human responses, not unique only to people with a severe impairment. The solutions that emerge from this kind of study will ultimately benefit people with any impairment type covered by the law.

Congress found that entities covered by the law habitually violated the civil rights of people with severe impairments. The ADA is about disability discrimination it is not about accommodation techniques, definitions of disability, or even employment. The ADA created a process which can be researched directly. There are both blunt and subtle elements in the failure to accommodate, but they are not limitless. Methods of obstructing requests can be researched and countermeasures can be developed.

The input from people with obvious impairments of their experiences with the ADA request process is essential in order to begin to create remedies. That input is potentially more useful than asking, as NOD/Harris (2004) did, whether people with disabilities felt the ADA made their lives better, or worse, or if it made no difference. Further, contrary to Gould (2004), it is possible to access this perception now, without waiting for statistics on the number of people who are covered by the law, without a complete definition of "disability," and without input from all the so-called "stakeholders." Disability discrimination is obscured by referring to covered entities as "stakeholders." Entities who evade, deflect, or resist reasonable accommodation requests are not stakeholders with their victims. It is possible to evaluate the ADA by looking at the request process now. Such evaluation will benefit anyone who is found to be covered by the law in the future. The paramount issue is whether people facing a disabling environment do request and receive effective accommodation. Requests for accommodation will only become normative for persons with severe impairments if requesters perceive the process as easier, safer, and more effective than the way things were always done, or easier than doing without access.

Strengths and Limitations of the study

This research does not allow an estimation of the prevalence of the problems or successes of the ADA, or the effects of demographics, type of accommodation, or type of job on the ADA request process. Therefore, it is important not to generalize beyond the situations of the interviews. The appropriateness of a request described by any informant may be questioned. However, requesters are not required to know if a request is reasonable. Limitations associated with a volunteer sample apply to this study (Borg & Gall, 1989). Informants may have an elite bias. The insider status of the interviewer adds depth and validity to the project, but may also add bias. Determination of the veracity, pervasiveness, and frequency of these findings must wait until larger more diverse samples are contacted. In addition, examples of successful requests need to be added to the knowledge base of the ADA request process. Those will need to distinguish between ADA requests and the work of state rehabilitation services and the behavior of entities that provided accommodation before the ADA was enacted.

Conclusion

Research on the implementation of the ADA is distorted if it omits the voices of people with disabilities in the evaluation of this 15 year old law. The lack of those voices leads to erroneous conclusions based on unproven assumptions. It obscures the Gestalt; the holistic view of the needs of people with severe impairments which rehabilitation professionals are trained to consider. This further delays the creation of a body of knowledge on effective ways to use the law, as compared to speculation on what it can accomplish. Furthermore, it leaves room for the suggestion that researchers and their funding sources, and both the public and professional media have hidden anti- ADA interests, or that government policy makers are committed to only one course of action. This omission may ultimately cripple the ADA or any legislative corrections that arise to restore or repair it.

The ADA is a departure from the rehabilitation model of education, providing goods and services, and cooperation among stakeholders. Researchers and policy analysts need to understand the law as addressing the crime of disability discrimination which has a variety of observable components. The ADA asks people with severe impairments to directly confront disability discrimination while providing almost no power or protection to these individuals. Negative or inadequate responses to accommodation requests may leave the requesters feeling even more disempowered than they might have otherwise felt as a result of having a severe impairment while living in a disabling environment. Teaching people to be more assertive leaves them open to the risk of being seen as the offender in a conflictual social interaction. The problem lies with an entity's intransigent penchant to discriminate on the basis of a disability, not with the way people with severe impairments make requests. As research into the ADA experiences of people with severe impairments continues, remedies may emerge. Rehabilitation counselors will then have a body of knowledge that will allow them to describe the benefits, risks, and limitations of the ADA. It is possible to go beyond just informing clients that they have the right to request accommodation and file a complaint.
Table 1
The 12 Entities that informants felt should provide effective
accommodations or should facilitate the accommodation process, but
that did not.

Independent Living Centers
A consumer organization of people who are blind
The National Library Service
A rehabilitation education program
A university's Disability Services counselor
A Paratransit service for people with disabilities
Vocational Rehabilitation Counselors
A County office ADA coordinator
A City Human Rights Department
A State Human Rights Department
A community mental health agency
National and State Social Worker organizations

Table 2
The multiplicity of barriers to ADA requests.

Type of Barrier Explanation / Complication

Multiple requests may be required There is more than one piece of
to reach one goal because of print needed to accomplish a task.
multiple inaccessible material.

Multiple accommodations may need One request success means failure
to occur concurrently to fulfil if all the access needed is not
a goal. provided.

Each request may have multiple Instructions on making each
rules, steps, actors, and request within a request
timetables. may be inaccessible and/or dated.

Multiple requests may need to be Each step may just be an
made to begin the process. entranceway with no indication
 of a clear beginning or end.

Multiple requests may need to be Required follow-up procedures may
made to continue the process. change, or be unknown, or be
 inaccessible.

Delayed access to information A goal may be unique or available
needed one time means the goal is only during a restricted
thwarted. time frame.

Requests at the same place for the Instead of creating a routine
same access may require training process for the same thing,
new staff with repeated each new staff person must be
justification and explanations. taught by the requester.

Choices must be made between Decisions rest on the requestor's
multiple types of accommodations. and on the entity's preference and
 unknown availability.

There are multiple sources from Is a publisher or a distributor
which to request the same responsible? Which source
accommodation. should be approached first?

The requester may be asked to solve Multiple problems offered instead
multiple problems the entity of access that is known
encounters. to be easy sidetrack the goal.

One change to solve a problem may A new process for accessibility
cascade into multiple changes. may require making multiple
 unwanted changes.

Requests invite unsolicited Views are expressed about the
evaluation and opinions of a request, the ADA, the
requester's life. disability, and the requester.


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John Jay Frank

Mississippi State University

James Bellini

Syracuse University

John Jay Frank; PhD CRC, LPC, Research Scientist, RRTC On Blindness and Low Vision, Mississippi State, MS 39762. Email: jfrank@colled.msstate.edu
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