From Ivory Halls to Virtual Walls: Accessible ServicesBy: Ellen Perlow
I am a MOC, in other words, a Member of the Class, Choir, Club, Chorus, and Congregation, aka a member of the human race. And I am happy to report, so are we all. Join the club!
Who are “we?”Self-identifying Members of the Class (MOCs). Everyone else is an MOC but has yet to identify themselves as such. Yes, "They are us." Please introduce me to the perfect individual who is getting younger. Everyone is going through something. We all do things differently—due to birth, illness, accident, natural disaster, lifestyle choice, war/terrorism, or simply due to aging.
I perceive a chasm, a canyon between those who self-identify and those who have yet to self-identify. We MOCs are looking from within to the outside. Our caregivers/service providers and the rest of the world seem to be looking from the outside in. Actually we all are the same in many ways: we have the same hopes, dreams, and goals, though we may strive to attain them in different ways.
Let me cite two examples. In the first, the American Library Association [ALA] Scholarship Form (including the one for the ASCLA Century Scholarship) was in an online format inaccessible to an applicant with visual differences. The applicant asked to receive it, in a timely way, in digitized format. A very helpful ALA staff member suggested: "Ask ASCLA to do it." A very helpful ASCLA staff member reported: "It can't be done." I did it. The second example was the interactive but inaccessible ALA Conference Map published two weeks before the conference on the ALA web site. The only alternative: a paper copy. A very helpful, sympathetic Executive Officer responded: “I'll see what I can do” and referred the problem to a Conference Services staff member, who asked, “What do you (singular form) personally need?” She continued, “You can't ask for alternative formats due to the cost and time involved.”
It is as if we were on a different wavelength. All I was asking for was for ALA to provide alternative formats upon request in a timely manner, according to its own accessibility policy. We must be reasonable. Of course it can be done—if you/we want to do it.
Do we know what we want?In order to get something, we have to know what we want: access to education, access to employment, equity of access. Yes, equity of access, employment opportunities, access to basic civil [= people] rights. After all, we are people.
Are we already getting what we want?If we are, there is no need for this article. Apparently, we are getting neither what we want nor what we need (civil rights, opportunities for jobs) as people. We are one of the largest minorities at 20 percent and growing, a minority that everyone joins sooner or later, and the largest under-represented minority in the workforce and in the library and information science profession with an unemployment rate as high as 70%, much greater than any other U.S. Census designated ethnic minority. How many self-identifying MOCs are library professionals? A handful? Have there been any studies on the number of self- identifying MOCs in the profession?
In contrast, reported statistics by American Library Association's Beverly Lynch concerning the future of the library and information science profession predict that by 2010, 67 percent of librarians and information professionals will have retired. In other words, the LIS profession is desperate for librarians and information specialists. Library and information science programs are desperate for people to physically or virtually fill their programs. Note the recently announced $10 million IMLS/Presidential Initiative to recruit librarians.
In this issue are stories by two librarians, graduates of ALA-accredited programs. One has benefited from a mentor and support from her employer. The other has not been so lucky. He has been seeking a position for four years. It’s an oxymoron: A profession that is desperate for new librarians and new librarians who are yet to be successful at entering the profession. This situation does not make sense. Or does it?
Why aren't we getting what we want and need?Once we know why, we may be able to adapt ourselves to the situation and get at least some of what we want. ... After all, we are the masters of adaptive capacity. A few of life's realities:
- Reality 1: People do what they want to do. We want our stakeholders to afford us the opportunity to get what we want not because our stakeholders must do so (no one likes to be told what to do), but because our stakeholders want to do so.
- Reality 2: We don't always get what we want. If we aim for 50 percent, we probably will get nothing. If we aim for 200 percent, maybe we will get 50 percent or more. You never know.
- Reality 3: For many people, there is only one way to do something ("my way or the highway" people). Such people have never experienced another way of doing things. They fear having to do something another way. For instance, when I informed one webmaster that people are listening to his webpages, it was a brand new concept for him.
- Reality 4: It could always be worse. Read Margot Zemach’s It Could Always Be Worse in your local public library or children's literature collection. (Also in Spanish.)
- Reality 5: The truth is 100 percent perception. 1) What is our stakeholders' perception of us? The answer is important to know if we want something that we don't currently have from these stakeholders. These stakeholders, after all, are potential employers, the people with the power and money and hopefully desire to give us what we want (i.e., a job). 2) What is our perception of ourselves? Our stakeholders' perceptions of us are likely also based on or reinforced by our perception of ourselves. 3) What generates perceptions? Images, actions, words, and experience. There is not much we can do about images and actions. How we do what we do often is different, noticeably different. We cannot hide. This is a visual and hearing and very mobile world. With words and language, we can do something. We have a choice. What are the words that our caregivers, our best advocates, our stakeholders, and we ourselves have used to describe self-identifying MOCs? We have described ourselves using a number of negative words—“disabled,” “disability/disabilities,” “impaired,” “problem.” Negative, negative, negative. We use this negative terminology to describe ourselves. So does the media, our caregivers, and our stakeholders. A doctoral candidate in nursing recently described her dissertation topic to me as “Impaired Nurses.” Nurses who have substance abuse issues like alcoholism or drug abuse? The terms “impaired” and “impairment”—terms we use to describe MOCs—unfortunately also have a very strong connotation of being on drugs and being a drug abuser.
- A company put up billboard/advertised via commercial: "Our product won't work. Our product is disabled, impaired. It stinks."
- We went on a first date, a match made in heaven, and we said to our date: "I don't do dishes or laundry. I don't make lunch or dinner, and forget about kids."
- We went for a job interview and said to the employer: "I don't do overtime or weekends. I don't do cataloging, only reference. I only know Dialog, not Lexis/Nexis or Westlaw, and I'll cost you an extra $10,000 for a piece of technology to use at my desk."
Should we expect anything else other than the product to be a flop and for the company to go bankrupt, or to be rejected as a potential life partner or as a potential employee? People, especially bosses, do not want problems. No one wants to deal with a problem.
How will we get what we want and need?After attending assistive technology conferences, like the Assistive Technology Industry Association (ATIA) and the California State University-Northridge/Center on Disabilities Technology and Persons with Disabilities (CSUN) Conferences, my big question was: Why, as so many MOCs complain, don't we have basic civil rights? Why aren't we accorded the same respect as other people? If only the world were to visit and be a part of accessibility and assistive technology conferences, everyone would understand.
At CSUN 2000, I met and conversed with one of the conference's security guards. This was his first CSUN Conference, as it was for me. Like me, he was in awe of the entire event. He was thrilled. Before coming to CSUN, he told me that he had never had such an amazing, positive, uplifting experience in his life. I shared his joy. He promised himself that, if at all possible, he would arrange to work at this conference every year. He would not miss it. He worked at the CSUN 2001 and CSUN 2002 conferences. I look forward to seeing him again at CSUN 2003.
If ATIA and CSUN were such beautiful experiences, showcasing people who do things differently, creating, inventing, using such high sophisticated technology, achieving on a level that surpasses most people's intellect (e.g., tactile vision research at the University of Minnesota), why weren't we getting what we want and should have simply as human beings? Why weren't our humanity and our achievements appreciated? After all, thanks to MOCs, the world is using voice recognition software and GPS systems without having to go out and buy a $55,000 Infiniti automobile. All you have to do is go to your local academic or public library to experience this high tech with the highest human touch. It did not make any sense. How could something like the assistive technology [AT] conferences and people who do things differently, such positive, extraordinarily outstanding, fascinating people and things which would wow everyone, be perceived so negatively?
I went to an English dictionary and looked up the words "disability,” “disabled,” “impairment,” “impaired," words commonly used, even in this session, to describe our cause and ourselves. What I read was: "Incapable, incapacitated, inoperable, can’t do." I said to myself: "Those definitions are not true! I just attended AT conferences at which all these "dissed" people are doing all this wonderful super high tech, complex, intellectual, fabulous work.” Then I had “an Oprah moment,” a light bulb went on in my brain. I know these definitions to be totally untrue, but why should anyone else? We cannot assume that they should. The entire world does not come to these AT conferences. The mass media does not cover these conferences. Not everyone is an occupational therapist, rehabilitation specialist, or physical therapist. Not everyone has had contact with an individual who does things differently in a noticeable fashion. I may have been mainstreamed, but most self-identifying MOCs apparently have not.
My personal revelation was that the words even I had been using all my life to describe myself, who I am, what I can do, other self-identifying MOCs, a great universally-relevant cause, were all negative, demeaning, depressing, disrespectful, and above all, false. The same word "disabled" is used commonly to describe inanimate objects that are relegated to the trash heap. No wonder the world does not give even a passing thought to giving us civil rights, civil meaning “people,” if they do not view us as people. No wonder we are not allowed to ride even the back of the bus; we are not allowed on the bus at all. I know this because I have personally lived the experience of being different, of being ridiculed for being different all of my life. Even in the long-ago past, some of my true best friends whose attempts to do what they sincerely thought to be in my best interest ended up causing me emotional harm.
Our predicament is that we are defining ourselves and permitting ourselves to be defined negatively. The good news is that we ourselves can do something about it.
There must be a better way to describe ourselves, something true and more positive than the terminology we currently use. That is why I coined the term "differability." We all have different abilities. We all do things differently. This is how I talk. You can choose your own words. I realize that legal language, the terms we must employ in legal documents, may be different. But at least, the U.S. Library of Congress has changed its "Handicapped" language to "People First" language, rather than to the literally disabling, neutered "Disabled Persons" it was going to institute as a new subject heading.
As they say, you get what you pay for. If you describe yourself to others negatively, negatively is how others will probably think of you. If you describe yourself to others positively, positively is how others will probably think of you. None of us would waste our time throwing money or effort at what we perceive as a losing cause. Describe the same cause positively as a winning, worthwhile cause, and we have a much greater chance of garnering support. For instance: Which sounds better: "Gun Control" or "Gun Safety?" "Pro-Abortion" or "Pro-Choice?" A “Smoking Ban" or "A Clean Indoor Air Act?" "The Patriot Act" or a "Citizens' Surveillance Act?" "People with Disabilities" or "People with Differences/Diverse Abilities/Differabilities?" We can only change ourselves, our own behavior. Other people will react differently to us if we act toward those people in a different way.
What would be success?Whatever we do:
- Must cost nothing. (We don't have any money).
- Must change others' perceptions of our cause to be positive and to instill in our stakeholders (the people with the money and power and the jobs) the personal desire to give us what we want, even if it is only the basics—equity of access, being treated as people, an opportunity to interview for a job.
- Must be "playing the same game,” in the same ballpark under the same rules as everyone else.
- Take others' interests and agendas into account. Will the employee him/herself get the job done right/well, the first time, and for the amount of money offered to pay him/her? Will s/he fit in personally and socially in the work environment? It is not worth a million dollars to work in a place where you do not feel welcome, where you feel uncomfortable, where you do not want to get up every morning and come to work. With a "Yes" answer to all questions, we have a chance. No to any or all, and there’s no chance.
Our power advantage: Our cause is universally relevant for everyone. What we have is super cool (i.e., the assistive technology and the people who invent and use it). Equity of access, being perceived as people-affirmative, validating one's humanity are universally needed by everyone. Since we all are aging, everyone joins the class, our group, sooner or later. Once we show others how personally relevant our cause is to everyone, they cannot fail to see that it is their cause too. Don’t assume that anyone knows what we know, what we feel, what or how we think. Everyone does it differently. Everyone is different. We all are unique. Positively educate.
Ellen Perlow can be reached at firstname.lastname@example.org.