Newsletter FSD Fall 2003

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Minutes of the Annual Meeting of the Foundation for Science and Disability (FSD)

Denver, CO: February 15, 2003

1. Call to Order/Introductions

Richard Mankin led the introductions and distributed copies of the agenda, Treasurer's Report and Grants Committee Report. Present were: Virginia Stern (vstern@aaas.org), Board Member; Laureen Summers (lsummers@aaas.org); Edward Misquez (emisquez@nmsu.edu), Ted Conway (tconway@mail.ucf.edu), Alfred DeGraff (mailbox@saratoga-publications.com), Betty Ingram (4bolhasas@bellsouth.net) and Richard Mankin, President. Ed Keller, Woody Anderson, and Erica Penn were unable to attend and sent their regrets. During the introductions, the attendees gave brief descriptions of their current professional activities. Several opportunities for enhanced networking and collaborative efforts among Foundation members were discussed, including the upcoming Second Annual RASEM Squared Partner Retreat, a conference to network with National Science Foundation Officers and exchange information about bringing more students with disabilities into high-tech professions (see http://rasem.nmsu.edu). Alfred DeGraff discussed his recently published book, "Care Givers and Personal Assistants: How to Find, Hire, and Manage the People Who Help You (Or Your Loved One)" (ISBN 0962110612, available at www.amazon.com) that may be of interest to FSD members. The book addresses, in particular, the important and growing need of respite help for family caregivers. Ted Conway discussed his symposium on new technology to assist persons with disabilities in the workplace.

2. Minutes - February 16, 2002 Meeting (Boston, MA)

The minutes of the 2002 Annual Meeting in Boston, MA were approved as written in the 2002 newsletter.

3. Treasurer's Report

Ed Keller, Treasurer, was unable to attend the meeting, but he sent this report for the year beginning January 1, 2002 and ending December 31, 2002:

Assets

2002

2001

 

Cash on Hand

4,601.14

4,504.14

 

Money Market Account

6,841.24

6,668.63

 

Total Assets

11,442.38

11,172.77

 

 

Income

 2002

2001

 

Dues

1,125.00

1,019.00

 

Contributions

150.00

3,875.00*

 

Interest

27.26

145.18

 

Total Income

1,302.26

5,039.18

 

Expenses

 

 

 

 

Newsletters

0.**

316.00

 

Student Award

2,000.00

2,000.00

 

Total Expenses

2,000.00

2,316.00

 

Net Income

-697.74

2,723.18

 

*3750 of this amount is from a judgement under ADA. See article in 2002 Newsletter.

4. Science Student Grant Committee Report: The committee submitted the following report:

DATE: February 15, 2003

SUBJECT: Report on Grants Committee Activities, February 2002 - 2003

TO: Foundation for Science and Disability Members

FROM: Richard Mankin, Chair: Erica Penn, Betty Weaver

We had about 400 requests for information in 2002, about 50% by email. Apparently, student-grant information providers have done an excellent job of disseminating information about our program. We received 6 completed applications of high quality. Mark Woods, a Computer Sciences student at Webster University, St Louis, MO, was selected as the 2003 awardee. Mark is doing a thesis on "Development of Object-Oriented Architecture of the Speech/Language Model", with potential applications for speech recognition engines.

Submitted February 12, 2003

Richard Mankin, Chair

The recommendations of the student awards committee were approved unanimously.

5. Other Old Business None

6. Old and New Business

Several ideas were discussed about the future goals and activities of the Foundation for Science and Disability. These included increasing the amount and number of awards, and increasing interactions with programs like Entry Point and RASEM2, the Regional Alliance for Science, Engineering, and Mathematics at New Mexico State University. Also, the current set of officers was continued for next year. Another idea that may be of interest to pursue for next year would be to invite recent awardees and researchers to present 20-30-min papers on their research in a workshop or symposium. An example title would be: "Scientists with Disabilities Doing Science: Research Activities and Perspectives after 25 Years of Increased Access to Meetings and Resources." --- Submitted by Richard Mankin February 17, 2003

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Ed here, once again and late once again, but we finished it before the end of 03!

We are going to do something different in the newsletter, although we did use this option many years ago. I am including in the newsletter a "writing" that has to do with the inequity of/to students, and adults, with disabilities have, even after they are supplied with their appropriate special needs, as defined by law (and their special education instructor {when available} ).

After the establishment of (FSD) we had items that various members wrote and were included in the newsletter fir comment. As a "friend of the Supreme Court" amicus brief (I think) etc. There were several such items, but the only one I can remember is the cased was concerning a deaf (or hard-of-hearing nurse). Her employer was changeling her capabilities and the adequacy of her performance as a nurse. Even with the support of FSD and other disability groups and advocates, she lost her case. We were associated with other actions, viz: John Gavin, Phyllis Sterner, some others, and I all testified before congressional committees and reported back to the membership he few newsletters that we do put out for interaction, as a forum for contemporary issues, and/or concerns of/about Disability and Science. We could retune to such inclusions in the newsletter. Enough of the reminisce,

As an example, in recent news (12/10) : WASHINGTON (AP) --US "Education Department officials have decided children with the most severe learning problems can be held to a different academic standard progress. The new department rule to be announced within days would affect a limited than their peers -- a move that will ease pressure on schools struggling to make yearly number of students deemed to have 'significant cognitive disabilities' by their intellectual development. And, more significantly, their scores would be counted states. It would allow those students to be tested against standards appropriate for as part of their school's performance".

We all can bring up questions on this issue, but now clearly the "No Child Left Behind" is now changed to "Only Certain Special Children Left Behind". And just who will devise the new exclusionary barriers for this sub-set of our children. I can remember similar, but more sever, exclusionary actions starting with a few children and eventually including adults with disabilities, and ultimately used on others. This occurred some 55-65 years ago in a place far-far away, another time, another continent, ultimate tragedies, and clearly out of the "lessons learned AND been there done that memories" of those CURRENTLY AUTHORIZED TO devise this ---------.

LET'S DO SOMETHING ABOUT THIS NOW! Congress? Dpt. ED? Ed

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Inaccessibility

So what's new! What's new is that the Supreme Court is going to hear the same old, same old challenge. .

This fall, the Supreme Court will hear the case of a man forced to crawl up steps of an inaccessible Tennessee courthouse to get to his trial. The state, appealing a lower-court ruling under the Americans with Disabilities Act, argues it should not have to obey the Act requiring access; that Congress had no right to pass the law since there was no real evidence that states discriminated against people with disabilities.

Since its 1990 passage, the ADA has been continually criticized by both state and local governments, by businesses, the media, and lawmakers as a "bad law". Ed

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A Backward Glance

-Previous Awardees of the Foundation for Science and Disability Grants --Richard Mankin

I'm not the type to look back much, but someone asked recently if the Student Grants Committee had kept in touch with our recent awardees. The question spurred a peek back to see just how many of the previous awardees are still in our field of view.

I've been chair of the committee since 1997 and have kept up with those who have maintained email addresses. All of the awardees since 1998 have posted at least one update on our email list. Some, like Joe, Cassandra, Linda, and My Lien have given us several updates on their progress. However, students are a particularly mobile group. Not surprisingly, I have little clue about the whereabouts or activities of many of the awardees below:

1990 Wendy S. Pava, Birgit Wolz, Elaine Hall

1991 Kevin Wilkes, Shan Ming Lee

1992 Meghal R. Antani, Lynn Hanninen, Mara Frohlinger

1993 David Fass, William Hylton

1995? Chris Tromborg

1996 Anne-Michelle Singleton

  1. Leslie Harper
  2. Maura O’Modhrain
  3. Joseph Barbera
  4. Jennifer Last
  5. Cassandra Quave, Jenelle Dorner
  6. Linda Bolle, My Lien Nguyen
  7. Mark Woods

If a current member recognizes one of these winners, maybe you could ask them to drop us a quick note. Who knows, maybe it would be worthwhile to look up a few names on the Internet and see if we can regain contact?

Even without later contact, however, I suspect most of the awardees have benefited from these grants. My remembrances of being a student are fading fast, but I do remember not having enough cash to attend a conference or run the air conditioner or make long-distance calls. That's why I enjoy participating on the Grants Committee and reviewing each year's applications. This award is the Foundation's most important programs.

Editor's Note:: Several of our current members are past awardees. Please send us a note so awe can update this list. Thank you. Ed

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Inequity in Disability

Introduction

 

Many advances have been made in accessibility and inclusions in the classroom in students with disabilities. It is now common for a student with a disability to enter college, take classes, go for an interview, get a job, etc. But often, once there, another form of exclusion becomes evident. Even when physical, biological, or intellectual obstacles are removed, other obstacles (discrimination, attitudes, ignorance, stereotyping, alienation etc.).

It is this latter realization in I once experienced which working at graduate college, which the it was clear in this context that the functional limitations of the person with a disability were taken care of but various "other" cultural / socio - forms of discrimination come to the forefront of the set of barriers to deal with. The abrupt reality that access and mitigation of life limitations alone do not result in equality.

Culture is a way of living and viewing the world that develops among a set of people who share similar experiences, values and concepts. Webster defines it as a complex of typical behavior or standardized social characteristics peculiar to a specific group, occupation, profession, sex, age, grade, or social class. Hence, there is most definitely a culture comprised of persons with disabilities that is different from that of the "mainstream" and other socio - cultures.

All persons share basic needs and most of the desires that make us human, but the day-to-day reality of living with a disability is difficult to grasp. Even when those without a disability in simulation exercises e.g., wearing a blind fold for a few hours, trying out crutches, using ear plugs, or wheelchairs, barely scrape the surface of the socio - cultured experiences of many persons with disabilities. Each disability, whether sensory, orthopedic, behavioral, intellectual, motor, etc., has its own unique set of "obstacles", limitations, experiences, and modifications that contribute to shaping a person’s perceptions and ways of living. The commonality that "bind" persons with disabilities together is that each has some type of limit in their life functions.

Even under the umbrella of the general term "Disability Culture" there are multiple sub-"units". Persons who were born with a disability have a different world view and experience back around than these who acquire the same disability later in life (e.g., pre-lingual vs. post - lingual onset of deafness for example). Likewise, persons who live in institutions will most probably have very different attitudes, perceptions, experiences, etc., than those raised by family members at home. Either way, persons with disabilities have a perspective that is a challenging alternative to the non-disabled "mainstream."

Members of racial, ethnic, and religious minorities generally share their minority status with their families. More than 14 percent of black students are in special education in the US, compared with 13 percent of American Indians, 12 percent of whites, 11 percent of Hispanics, and 5 percent of Asian-Americans This is in contrast to individuals with disabilities, where they generally share their minority status within a majority community. However, there is evidence that most children with disabilities function quite well in the non-disability, majority culture. During this time, the child’s parents usually search out and find adults with similar disabilities or disability support groups. All of these individuals tend to be the ones in the effective disability culture (Carol Gill, 1999. The Disability Messenger. Publ. PCEPD).

As the Internet has expanded and technology has provided access to more people with disabilities, on-line publishing, email, listserve, and web communication in general has flourished throughout the Disabled Community. Pages are filled with fresh, "edgy" art and poetry, radical literature, and literature that challenges traditional views of disability. Many of these insights are given by providing first-hand accounts of the author/artist’s who have disabilities. However, proportionally fewer persons with disabilities have access to computers. It has been an enlightening "door" to the differences between the outlooks, perception, productive outlets, etc. of members of the disability culture and the others, the "outsiders!"

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Some Helpful Strategies

NOTE: This was composed with a teaching view of this important problem!

 

Discussion and Interaction

Extracurricular Activities

Experiential Activities

Institutional

Methods and Materials

Home and Family

Personal

Stereotypes

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I am sometimes concerned by the use of the generic term "disability," the root is troubling (i.e., non-or no ability). In "plain language it does not denote inability. Today I learned that Pregnancy is a disability. I kid you not! My former student, who is pregnant could not get insurance coverage unless she had a " short term disability" the new bureaucratic term for pregnancy! The "disability" term however, sets the stage for any interaction thereafter. Stereotypes, biases, and misconceptions leap into one’s mind. The stage is set and the cards are stacked against that "D" individual. Is every difference in sensory, motor ability, etc. a "disability"? For example: I was in my wheelchair at lunch in the Commons Gallaydett Univ. where most of the individuals in the room were deaf. I was probably the only person who did not know sign language. The rest were all communicating easily. I was the only one left out of the communication "loop." So who is the "outsider" in this scenario? Disabled, yes, but not a member of the "in residence" culture. In a place where everyone signs, door bells and fire alarms blink, and spoken language is essentially unwanted and generally unnecessary, noises are unusual, but so what! To the outsiders, the lack of noise in these crowded areas is "deafening." Is deafness a disability or just a difference? Probably both. There were two clearly defined sub-sets of "The Disability Culture" in the Commons that day; it all depends on the context.

In viewing disability as a difference, it is easier to see how a culture can develop among people sharing a common factor(s) that differs from those without disabilities. Examples of this are found among the deaf community, where the ability to hear is often not desired. Sometimes individuals who are deaf will reject the "cure" of medical intervention (say, the cochlear implants). Pride in Deaf Culture is enormous, American Sign Language (ASL) is considered the native language, and the teaching of ASL is linking one generation of individuals of this unique culture to the next. A similar dichotomy, but in another sensory system, exists in the blind sub-culture in which audio is essential and the visual senses are not, nor are they welcomed. Members of the disability "community" provoke the same type of response that racial, religious, gender, etc. groups receive. The U.S. Congress recognized this when it included persons with disabilities in their "hate crimes" legislation.

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Your comments, short articles, announcements, etc. of interest to the membership are welcome.

  

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