Take Ragged Edge Online's quick survey right now! Click here to tell us your story.
Stories of accommodation gone wrong
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:
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
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.
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:
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:
(2) Disability advocacy groups have their own agenda and their own ADA agenda -- and they may not be the same as yours.
(3) Requesting ADA accommodation may result in retaliation and hard feelings.
(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.
(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.
(6) Ironically, when we try to obtain reasonable accommodation, we get accused of trying to hurt others.
(7) We may think our experiences with ADA are too many and too complex to explain. One person wrote:
(8) This is one, maybe the only, reward of doing this research.
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.
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.
WHAT DO YOU THINK of what you've just read? Click to tell us.