14: Intellectual and Developmental Disabilities
Interview with Dr. Steve Taylor, Syracuse University, Editor, October 2007
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This installment of Periodical Radio is about the scholarly journal Intellectual and Developmental Disabilities. This is a new name for a journal published since 1963 as Mental Retardation. There is a story behind the name change, a story I’ll let my guest tell.
The journal is a bimonthly publication of the American Association on Intellectual and Developmental Disabilities. Each issue contains three to five research articles written in the style prescribed by the American Psychological Association. Issues also include sections titled “Perspectives,” “Book Reviews,” and “Trends and Milestones.” As is typical with scholarly journals, Intellectual and Developmental Disabilities is available both online and in print.
My guest is Dr. Steven Taylor, Editor of Intellectual and Developmental Disabilities and professor at the Center on Human Policy and the School of Education at Syracuse University.
Steve: Dr. Taylor, welcome to Periodical Radio.
Dr. Taylor: Thank you.
Steve: Let’s begin with the recent change in the name of the journal and the association. Why the change from Mental Retardation to Intellectual and Developmental Disabilities?
Dr. Taylor: This has a long history of debates about the language we use. But the long and short of it is “mental retardation” has become pejorative. People use, for example, the word “retard” as a generic epithet. So the name was changed largely for that reason.
Steve: I see. I don’t know about very much about this area. What’s the distinction between intellectual disabilities and development disabilities?
Dr. Taylor: “Developmental disability” is a broader term that refers to people who acquired disabilities at a young age, at the so-called developmental age. It can include people with physical disabilities, such as cerebral palsy. “Intellectual disabilities,” as the name suggests, refers to people who are slow in learning. It doesn’t mean they can’t learn, but that learn at a slower rate than other people. So “developmental” is a broader term, “intellectual” is a specific term that refers to people with intellectual disabilities, the people we used to call “mentally retarded”. There’s such a long history of language in this field. Before that, people were called mental defectives, and before that they were the feeble minded, and before that they were idiots, imbeciles, and morons. If you follow the history of this field, and people in this field say it all the time, we continue to come up with new professional terminology that over time becomes negative and stigmatizing. So the shift to “intellectual disabilities” was long in coming for what was previously the American Association on Mental Retardation and the journal Mental Retardation. It was really prompted by the objections of many people who have been labeled mentally retarded. Families find that terminology just so offensive today. The question, the debates we have, is it the language that’s stigmatizing, or is it the broader society’s stereotypes? We’ll continue to stereotype people as long as we devalue them based on their presumed intellectual ability.
Steve: What disciplines are represented in your journal?
Dr. Taylor: It’s a somewhat unique journal, in the sense that it is very interdisciplinary. But I’d have to go back to give you the context for it. What’s now the American Association on Intellectual and Developmental Disabilities was established in the latter part of the 1800’s as an organization of superintendents of asylums for idiots. Originally it was very medically dominated, the association. Then in the early 1900’s psychology became more prominent, so psychologists became involved in the field. More recently it’s become a much broader field. My own background is sociology, not psychology or medicine. We have members of the association and subscribers to the journal who come from a full range academic disciplines. Some are more clinically oriented: nursing, physical therapy, special education, medicine, psychology. But there is a growing number of people with backgrounds in law and public policy. A relatively recent event, given the long history of the field, is that today we have laws to protect the rights of people with disabilities, including people with intellectual disabilities. We have a right to education, we have the Americans with Disabilities Act, so attorneys and policy makers are now interested in the field. There are historians who are interested, and people with backgrounds in philosophy. As I said, my own background is as a sociologist, and I’ve tried to encourage submissions from people in the social sciences to the journal. From my vantage point, my interest is not necessarily studying people with intellectual disabilities themselves, but more studying intellectual disabilities as social and cultural phenomena. For example, public attitudes towards people, you know, the representation of people with various forms of disabilities in popular culture and in the media, in television, movies and so on. It really is a diverse field. One of the things I’ve tried to do as editor of the journal, and I’ve been doing this for quite a while, 1993 I started, I’ve tried to encourage submissions of manuscripts from people who have new and unique perspectives on the field.
Steve: There was a recent “Perspectives” piece in June 2007 by Robert Perske.
Dr. Taylor: Oh, yes.
Steve: He outlined some of the quite profound changes over the last century in attitudes toward persons with intellectual disabilities. Could you tell us a little about those attitudes and how they’ve changed? You’ve alluded to them, but could you talk a little bit more about the changes over the century?
Dr. Taylor: You know, the history of the field has changed rapidly. I’ll go back quite a while to the mid eighteen hundreds, which was really when the field was developed. Before that time, people with various disabilities were kind of lumped in together. There weren’t distinctions between people we would call intellectually disabled and people today we would call, or characterize as having psychiatric disabilities. Back then, and the terminology is, you know, offensive. Back then idiots and the insane were kind of mixed up together. In the mid-eighteen hundreds, distinctions started to be made between different disability groups. The first efforts, the professional efforts, were mainly educational in nature. It was an optimistic period in the mid-1800’s. By the latter part of the 1800’s, early 1900’s, societal attitudes changed radically, and the emphasis shifted from educating people to, quite frankly, social control. There was a whole social movement, somewhat well known today, the “eugenics” movement, that was designed to prevent what was seen as the transmission of defective genes. I mean the theories at the time were that we had inferior people who were procreating, spreading their genes, and all kinds of disabilities were kind of associated in that, especially what was called “feeble-mindedness” at the time was associated with crime and vice and all kinds of social ills. It’s a long and complex history that reflects to some extent waves of immigration in the latter part of the 1800’s, early 1900’s. The fact was with people coming to this country who did not share the basic Anglo-Saxon culture and they did not speak English, and they were viewed as inferior. Literally, there was a movement to give immigrants IQ tests that were just being developed to try to sort out people who would be bringing these supposed defective genes into the country. The irony is the tests were given in English to people who didn’t speak English. There was an element of racism in all of this, either racism or discrimination against certain ethnic groups. Immigrants in the latter 1800’s, early 1900’s increasingly were coming from southern and eastern Europe, not western Europe, which was the dominant ethnic group in America. There was a lot of concern about this, in some cases bordering on hysteria about the defective people coming into the country. The response was to develop a series of social control measures, where people were institutionalized, often in the name of doing something for them. The reality was that it was to keep them off the streets, keep them out of the community. So we developed the institutions. There were a series of involuntary sterilization laws passed. The figures are not precise, but something like 27,000 people with intellectual disabilities were involuntarily sterilized to keep them from procreating. There were restrictive marriage laws. Certain categories of people, both ethnically and based on disability were excluded from being able to emigrate. So we went through this very, very dark period of history.
Steve: What then caused the shift away sort of a eugenics model to a more compassionate model?
Dr. Taylor: Well what really killed eugenics in this country, it rears its ugly head once in a while, was Nazi Germany. The first people who were murdered in Nazi Germany, and on whom the mass extermination techniques were perfected, were people in mental institutions. Both people with intellectual and psychiatric disabilities, hundreds of thousands of them were killed in Nazi Germany. I think there was such revulsion to what happened in Nazi Germany, and what happened to Jewish people, gypsies, so on and so forth, that a lot of these eugenics theories were just utterly discredited, because of the Nazis. When the Nazis started killing people in institutions, as I said they perfected the gas chamber, they would send people into showers and then gas them to death. The Germans behind that effort cited American literature from earlier in the 1900’s to justify that. So that was a bit of a turning point. Other critical events that happened—because of the assumption that feeble-mindedness, mental deficiency, mental retardation, whatever, because of the assumption that it was always hereditary, you know, family members, it was stigmatizing to be a family member. That started to change in the late 1950’s, and continued throughout the 50’s and into the 60’s. So you had family members coming out, like Pearl Buck was a very well known author at the time, who happened to have a daughter with mental retardation. She wrote about that. Then in the early 60’s the Kennedy family, you know JFK’s sister happened to have what was called mental retardation. The Kennedy family was public about that, and addressed the issue of mental retardation. After that, family members then could, parents and other family members could come out publicly and start advocating for their sons and daughters. Then most recently, there’s a whole movement of people with intellectual disabilities who are so-called self advocates. They’ve organized groups to change public policies. Today things aren’t perfect. There’s growing acceptance, and at least, occasionally in TV programs, movies, in popular culture, you’ll see people with Down Syndrome, for example. Increasingly it’s no big deal. People with all forms of disabilities are much more visible in society today. We still have a lot of negative public attitudes to overcome. The belief that if you have an intellectual disability, and I use that term because it’s less offensive. There will come a point in time where that is pejorative, that’s what we’ve learned over history. But you see people with mental retardation, they’re working, they hold jobs, they’re living in the community. They’re no longer predominantly just put away in institutions. We’ve come a long way, we have a lot farther to come. Anyway, to go back to the journal, one of the things I’ve tried to do as journal editor, and if you’ve seen the journal, there will be research articles in there, but I created this whole section of the journal that is called “Perspectives” where I want thoughtful commentary from thoughtful people. I think we can learn a lot, not just through traditional research, but reflecting on where we’ve been and where we’re going. That’s where the Perske article comes in. You know, Bob Perske is someone I’ve known for years. He’s been very active in the field, yet he actually has a background in religion, and that’s how he got involved in the field, as a chaplin at an institution way back in the 1960’s. Now he’s become a strong advocate for the rights of people with intellectual disabilities. He’s now a professional writer. Writers, people with backgrounds in the humanities, can contribute. The field historically, in my opinion, was just too narrowly dominated by clinical, medical, psychological perspectives. We have to look at intellectual disability as a broader social and cultural phenomenon. In the same way, the analogy, and people don’t always get the analogy. Today we study race, ethnicity, gender today in ways very different from the way all those issues were studied before.
Steve: I wanted to ask you, the association also publishes the American Journal on Mental Retardation. I think this addresses that point. Why have two journals for the one association?
Dr. Taylor: Historically, well, two things. If you read American Journal on Mental Retardation, and it still has that name, by the way, which is interesting. It’s much more, almost exclusively, oriented to medicine and psychology and much more basic kind of research. Mental Retardation, when it was founded first in 1963, was designed to be more of an applied journal, a journal that published research, but a more practical kind of research, and applied research that would be of value to people in the field. In my opinion, we need all kinds of research. Sometimes we learn things from basic medial research, but we also need research that’s more relevant to the issues of today. As I said, since I became editor in the early 1990’s, I kind of broadened that applied mission to really encourage thoughtful commentaries and essays on the field. So I’ve kind of gone from an applied research focus, it still has that, but it’s broadened in terms of emphasis of the journal.
Steve: I have a question about the actual production of your journal. It’s done in conjunction with Allen Press. Can you describe for our listeners what Allen Press does, and how their services help you publish the journal?
Dr. Taylor: I’ll explain what I know. The way the association works and the journal works is, you know, my job is to be editor, which means I coordinate the review process, I make final editorial decisions on manuscripts as to whether they’re accepted for publication or not. After that, the production process has always been in the hands of the central office of the American Association on Mental Retardation, now American Association on Intellectual and Developmental Disabilities. I’m glad, I have my hands full just doing the editorial process, working with authors, helping them to strengthen their articles. So the publication process has always been handled by the Association, and now they’ve contracted with Allen Press to handle the production of the journal. Now where it has an impact on me as an editor, is that we’ve moved to a web-based submission system that is through Allen Press. When I started, in the old way of doing this, a manuscript would be mailed to me. As an editor, the first question I have, and the first decision I have to make, is what kinds of people would be good to review this manuscript? Since it’s an interdisciplinary journal, I make sure that I have reviewers who have relevant expertise. So I do publish historical pieces, and I want people with backgrounds in history to review those, or sociology, or law and public policy, whatever it is, I want reviewers from those fields to evaluate the articles. Anyway, once I select the reviewers, then the manuscripts are sent out in the mail, then sometime later reviews are mailed back. Then I integrate the reviewers’ recommendations and mail a decision letter. Another thing about the publication process is manuscripts are almost never accepted as is. The role of an editor is to work with authors to make their manuscripts stronger, if they’re acceptable to begin with. Anyway, that was the old system. Right now, through Allen Press, and they have this web based system called AllenTrack, authors submit via the web, then I get a notice that the manuscript has been received, and then I select the reviewers, and they are immediately sent the manuscript via e-mail. There are automatic reminders to reviewers, saying your review is late, we need your review. When the manuscript goes out to them, there’s an opportunity to decline if they’re too busy. Their reviews are submitted electronically. Then once I have all of the reviews in, typically three, sometimes I’ll decide on two if a third reviewer never submitted something. My decision letter is sent electronically. What it means from my vantage point as an editor is it cuts several weeks off the decision making process. It’s very efficient, because I’m not relying now on the mail. I’ve found X percentage of mail never gets through, so the electronic system is much more efficient.
Steve: Dr. Taylor, what do you enjoy best about the job of editing the journal?
Dr. Taylor: Two things. One is, the Association gave me the opportunity when I became editor, I wanted to introduce new features, like the “Perspectives” section, and like the article by Bob Perske. You mentioned it, and you don’t have to answer this, but my guess is that even though you’re not in this field, you could read Bob’s article and basically understand what he was talking about. I wanted people in the field to be exposed. Bob Perske, as I say, has been in the field forever. He never published in any of the professional journals, because his writing wasn’t suitable, it wasn’t the typical research writing. Again, I have nothing against researchers, I am one, but I want to expose readers to different points of view from thoughtful, critical thinkers. I did that, and introduced some other features. The other thing, quite frankly, most editors I know, one of the most fulfilling aspects is especially working with young authors. I mean the person who just got her or his Ph.D., for example. They did their dissertation, and now they want to publish journal articles. One of the things, very often, in graduate school you’re taught to write papers in a certain way, or to write a dissertation or thesis. You’re really not taught to take a lot of information and boil it down into a journal article. They don’t know how to frame an article. It’s fulfilling, I think, to most editors to work with someone who has something important to say, but they haven’t figured out how to say it. So working with authors through multiple revisions, and helping them to frame their articles, to tighten their reasoning, to supply details that the readers will want to know. The other thing, since as I said, the journal has been designed to be applied, my question always is when I read an article, or when something comes in is, “who cares about this, who’s going to read it?” Very often, new authors, they have something to say, but they can’t explain why readers should be interested in it. That’s one of the most fulfilling parts of being an editor, is feeling like you’ve had an impact, and you’ve helped someone contribute to our knowledge and our understanding. You know it’s their work, it’s their ideas, but they just need help shaping it.
Steve: Dr. Taylor, thank you very much for being my guest here on Periodical Radio. Our half hour is already done, believe it or not.
Dr. Taylor: Okay, fine.
Steve: Thank you very much.
Dr. Taylor: Sure. Bye!
Information about Intellectual and Developmental Disabilities, including how to subscribe, is online at www.aaidd.org. Thank you for listening to this installment of Periodical Radio. I'm your host, Steve Black.