On July 26, the 14th anniversary of the passage of the Americans with Disabilities Act, Ragged Edge online posted an article by John Jay Frank Ph.D. Frank is a research scientist with the Rehabilitation Research and Training Center on Blindness and Low Vision at Mississippi State University whose recent research has focused on blind and visually impaired people seeking accommodations under the Americans with Disabilities Act. He has been studying what happens when people request accommodation.

Publishing Frank's article, "Time to gather our own evidence," was our effort to expand the disability rights community's discussion of the problems which those of us with disabilities face in getting accommodations that are we are supposed to be able to get, by law. We were also curious as to what would result if we tried to do a survey asking questions similar to ones Frank had asked participants in his initial research.

The first batch of evidence is now in. Our survey so far has gotten over a hundred responses, and some continue to trickle in even now. Many of you provided detailed stories of accommodation gone badly wrong:

"I travel quite a bit," said one respondent who is legally blind. "When I'm making transfers from one plane to another, because I can't see, I ask the nearest flight attendant or staff person inside the airport directions on where my connecting flight is (what gate) and then ask for directions on how to get there.

I usually get told what gate my flight will be at but I usually have to ask several times to get directions to the gate. Usually, the response is, 'it's that way' -- and since I can't see more than the person's body in front of me, I usually can't even tell which direction exactly they are pointing. Even when I explain that I can't see, they still point and give visual cues like, 'when you get to the hallway over there, you'll see a sign up above you and it will tell you where to go.' That's how I get accommodated. "

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A wheelchair user told us that he had complained to the city about a curb ramp near his home. "There was a lip, and it wasn't flush with the street. The city contacted me very shortly after the complaint, and made an alteration that looks to be just adding some asphalt rather than constructing a new curb ramp. The fix worked for him personally, but, he added, it wasn't really correct as a curb ramp.

"I've thought about mentioning this one again, but currently I'm waiting on the follow-through in two places where there are no curb ramps, and the city has agreed that there should be. ..."

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Another wheelchair user wrote, "I have written many letters to many businesses requesting that they remove their architectural barriers. Ninety nine percent of the businesses that I have written have ignored my letters, even though I have pointed out the federal tax credits they can receive for barrier removal."

Sometimes, she says, she points out the barrier directly to the building manager. "The usual response is to once again ignore me. Responses include, 'We're grandfathered' and 'we don't want to lose any parking spaces by providing accessible spaces.' I also hear, 'we have lots of people in wheelchairs stay here and no one has ever complained before' and 'no one in a wheelchair ever comes here, and if they did we would be happy to assist them.'"

These are the polite responses," she added. "I won't go into the other kind."

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A respondent who identified as "hard of hearing" wrote, "I attended a convention in Philadelphia and had informed the hotel as a courtesy that I had a service dog with me. I requested that they notify their security and hotel staff so that I did not get ejected from the hotel. I also requested same of convention staff.

"I was told it would be taken care of."

When she actually arrived at the hotel for the convention, though, it was a different matter. This likely sounds all too familiar to Ragged Edge readers.

"I was not ejected from the hotel, but I was requested to leave --told I could not have the animal in the hotel."

When the situation got "resolved," she wrote, "it was for this dog only, and only for certain areas of the hotel. It did not apply to my room, which was never cleaned because cleaning staff refused to do so because of the dog's presence, nor did it apply to the bar, lounge, or restaurant areas." So, in effect, her "accommodation" kept her out of those areas of the hotel.

What have we learned?

People's efforts to accommodate you end up being ineffective, either intentionally or because they refuse to listen to you. You can't ask for too much, though; can't push your luck. You're given excuses again and again, but no accommodation. You're given an accommodation -- not the one you asked for, not the one you needed -- but you're not supposed to complain because, after all, you've been "accommodated." Don't press the issue or you might lose your job.

Frank, who was given the data from our surveys but not the names or other identifying information from the respondents, says he will spend a number of months examining the data we collected; for him, the data will serve in his research into whether the process of requesting accommodation under the ADA is so onerous and unpleasant that people do it rarely or end up avoiding it altogether -- and whether anything might be done to change this.

For us at Ragged Edge, these responses are just the start. We want to keep hearing from you. If you haven't yet filled out our form, you can do so now at www.raggededgemagazine.com/adasurvey.shtml

Frank began his work of analyzing requests for accommodation using "a long established social psychological construct called 'the avoidance of help-seeking.'"

Research literature, says Frank, shows that people avoid asking for help -- any help, not just a request for an accommodation, which is, after all, perceived as a form of help, he notes. The reason most often given, he says, is "is that asking for help is a threat to self-esteem."

"People find it demeaning to be perceived as needing help or to be the recipient of help."

There are "systemic environmental barriers to help-seeking that actively serve to demean or repel help-seekers" as well, he says Some recent researchers "wonder if most people with disabilities even believe they have access to the help presumably made available to them by the ADA."

Researchers have identified specific "physical, knowledge, and communication barriers" including

• inability to get to where services are provided
• lack of transportation,
• for people with vision and hearing impairments, lack of staff to assist in filling out forms
• ever-changing rules and procedures
• aloof, brusque, or rude attitudes from service providers
• overwhelming red tape procedures
• complicated language and small print on printed material
• staffers failing to communicate in welcoming or effective ways.

Other reasons for failing to seek an accommodation, says Frank, include the realization that help is not really available and fear of retaliation. "The bottom line," says Frank, "is that the request and redress process is so unpleasant and unrewarding, people will not use it."

This has certainly seemed to be the case with the folks we heard from.

"I am legally blind and my requests have always been for large print software to do my job or to take employment tests," one survey respondent told us. "In every case I offered to provide the software. In every case I was told that the IT [information technology] department or the manager said that due to security reasons they could not use my software.

"Last week I told an employment agency that they could download the software for free if they did not trust my CD to be virus free. Again the answer was that they could not download the software for security reasons.

"I did not file complaints with EEOC during any of these situations. I got on with my life and continued to look for employers who were interested in working with me."

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"I am hearing impaired," another respondent wrote. "Many jobs I've had require me to occasionally answer a phone. Sometimes, I cannot hear the person on the other end, so I have asked or suggested to my employers for a phone with higher volume control. Granted, they hired me not knowing about my hearing loss, but I did not feel a need to tell them because my job was not answering phones.

"Instead of getting these phones, they ignore my request, and then decrease my hours or get frustrated with me because I occasionally have trouble hearing the person on the other end.

"I feel that one of the main reasons I was fired from a job was because of my hearing loss, but I had no proof. . . . "

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How we sorted the data

We received a little over 100 responses but not all of the responses were equally usable. A little over two-thirds of those we received were able to be tabulated.

Respondents told us of nearly 800 requests they'd made for various accommodations in the years since the ADA became law.

Fewer than half their requests, though, got them any kind of accommodation. When we totaled the accommodation requests, they came to 370. (One person said they made 3,000 requests, which is not part of that average.) And just over 300 of those -- 306 -- were what the respondents considered "effective."

Looked at another way, over half -- 52.5 percent -- of those of you who filled out the survey reported not getting any accommodation at all after asking for one. Over 60 percent of you said the accommodation you got wasn't really effective.

A blind student wrote of his experiences at Cal Poly in Pomona:

"The computer labs were never made accessible. I made requests in each case, but never got the access technology installed during the quarter in question.

"Usually, the school would offer a human reader to read the screen and assist with the mouse, etc. I have no doubt that my grades suffered from this lack of adequate access.

"At Cal Poly Pomona," he continued, "every student must take a graduate writing test. It is a test of penmanship, spelling, grammar, punctuation, and exposition. I showed up for my test at the DSS office, expecting to be able to use at least a computer with speech output. I was furious to learn that no accommodations were allowed, due to school policy.

I was given a few pencils, a blue book, and a staffer read the essay question. I am blind. I rarely ever write more than a note on a greeting card by hand. Nonetheless, I was angry enough to scribble out my essay. I kept track of where I was on the page by placing my other hand over each written line. I was unable to re-read my work or proofread, and could only guess at where to dot the i, cross the t, or insert the odd punctuation mark. I passed, barely."

A few years ago, Dr. Stephen Kaye, research director of the Disability Statistics RRTC at the University of California at San Francisco, examined data for 1994 and 1995 from the National Health Interview Survey Supplement on Disability and found that for employed persons with visual impairment who needed accommodation, 39 percent reported they had not been accommodated.

In its 1982 study of accommodations provided to "handicapped" employees by federal contractors, Berkeley Planning Associates found that 30 percent of respondents reported asking for an accommodation but not getting it, said Frank.

Did those involved in passing the ADA know that they were passing a law that would sound good but yield far less in real benefits for disabled people, because the burden was put on the disabled person to demand access and accommodation? That is less not entirely clear, although it is known that Congressional compromises made to the bill that would become the ADA lessened the burden on government and business, and placed greater burden on disabled people to advocate on their own behalf in order to get the law enforced.

While our data comes from a volunteer sample and are not randomly selected, Frank pointed out, they suggest that as time goes by, people are receiving fewer and fewer effective accommodations. And, as we at Ragged Edge want to believe, they may also suggest that perhaps disabled people are at least more willing to notice and talk about the lack of accommodation.

Though Frank did not suggest it, it seems to us that perhaps another factor to be considered is that the level of exasperation on the part of those being asked for an accommodation may be rising. Perhaps this is because of a general public perception that disabled people are being "uppity" and "asking for too much."

At this point, all of this is speculation. But we want to continue our look into this phenomenon. In a couple of weeks, we'll be running another article on your responses. If you want to be sure to read about it, sign up for our free e-letter.

A research scientist comments

John Frank took an initial look at the responses. At his request, he was not given any identifying information as to name, gender or geographic location of the people responding to the surveys. From what he calls his "very initial" reading of your responses, he found that 8 things jumped out at him. His points are below, along with some relevant quotes he pulled out from your survey responses:

(1) We need to be aware of the risks we take in pursing requests:
"The major mistake I made was thinking that E.E.O.C. had in place a creditable plan to protect me against retaliation."

(2) Disability advocacy groups have their own agenda and their own ADA agenda -- and they may not be the same as yours.
" I called the advocates who went, 'OH CRAP! can you call the Senator back and ask him not to pursue this?' "

(3) Requesting ADA accommodation may result in retaliation and hard feelings.
" It is bad when to get an accommodation without facing resentment by the agency denying me accommodation, I had to be transferred out from under their program. "

(4) This is a useful example of a survival technique. We often try to "pass" until it is safe to say we are disabled. The ADA does not yet make it safe.
" I was hired because of my qualifications and experience and brought up the ADA only after the three months of the company's policy says staff can be let go without any explanation. After consulting with an advisor I waited the three months before addressing my needs for accommodations under the ADA."

(5) People are often told that if they get things in writing when they ask for an accommodation, it will help. But those we ask for accommodation often resist putting things in writing. At this time however, having written proof is not likely to help much, anyway.
" I have requested what was spoken to be written down over the six years and even requested assistance from the legal office at my local Independent Living service. However they did not know how to help or assist with this hidden disability and I [got] nothing in writing. "

(6) Ironically, when we try to obtain reasonable accommodation, we get accused of trying to hurt others.
"The manager did not place a work request for a handrail; instead she told other patrons that I was trying to get her fired. "

(7) We may think our experiences with ADA are too many and too complex to explain. One person wrote:
"I can't possibly answer this survey," because of his/her many experiences. That person then went on to give many clear examples of accommodation requests and negative responses to them. Beside the number and complexity of our requests for accommodation, there is also an emotional toll. A friend of mine told me her ADA stories and then a year later re-told her ADA experiences, but left out one very major one. We may tend to, or try to forget painful and humiliating experiences, and just want to get on with life.

(8) This is one, maybe the only, reward of doing this research.
" I'm at one of those very, very low points in life where I have given up again. Bless you for caring this much about others."

Listening has been called an act of love. It certainly is a primary means of showing respect and care, particularly when accompanied by empathetic understanding. When people with severe disabilities read these stories we are moved by them because we've been there and we know what it feels like. The other rewards, that may only come a long way down the road, are the things that we can learn from what is happening when people with the right to ask for access do exercise that right, in situations that are not complex, confusing, controversial or hard to understand.

These are the issues about ADA that should be described, both for our own safety and freedom and to develop any changes that need to be made in how the law is enforced or evaluated.

Posted Oct. 7, 2004.

John Jay Frank Ph.D. is a research scientist with the Rehabilitation Research and Training Center on Blindness and Low Vision at Mississippi State University.

Frank's study, The Impact of the Americans with Disabilities Act (ADA) on the Employment of Individuals who are Blind or Have Severe Visual Impairments, Part 1: Elements of the ADA Accommodation Request Process, can be purchased from the RRTC for $20 and is available in print and on cassette or computer diskette. Mail your check or purchase order, or fax a purchase order, to MSU-RRTC, P.O. Box 6189, Mississippi State, MS 39762 PH: (662) 325-7825, FAX: (662) 325-8989. They also accept Visa and Mastercard credit card orders.

Read John Jay Frank's article for Ragged Edge, Time to gather our own evidence.

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