אילנה פרלוב Ellen Perlow, Ph.D. CHES eperlow@hotmail Texas Woman’s University

1. A for Accessibility: People with Accessibility Needs at the Crossroads "א" לנגישות: בעלי צרכי נגישות על פרשת הדרכים English version אילנה פרלובEllen Perlow, Ph.D. CHES eperlow@hotmail.com Texas Woman’s University 5th International Teacher Education at a Crossroads Conference, Israel 27 June 2007 – י"א בתמוז תשס"ז http://www.a4access.org/kenes2007.html http:// www.a4access.org/kenes62007anglit.ppt This document in is alternative formats upon request. Perlow - Teacher Education-Israel - June 2007

2. Introduction-Background/Purpose of Study • Study approved by Institutional Review Board (4/2005-3/2006) • Study was presenter’s dissertation (citation on page 14) • Investigates voluntarily self-identifying adults with accessibility needs’ evaluation of accessibility-related terminology in American English • Purpose: Class empowerment • “Representation matters.” (Bérubé, 1996) • “Nothing about us without us” (Charlton, 1998) • Members of the class need to determine the expression of our own reality and discourse. • Accessibility agenda failure despite universal importance • “Must-do” v. “Want-to-do” • Change the language, change the perception • Researcher=stakeholder Perlow - Teacher Education-Israel - June 2007

3. Methodology - Participants • Informed Consent: Participants chose own personal definition of the term “Accessibility Need” and self-identified voluntarily with this definition. • Why?: Causes of accessibility needs: birth, illness, accident, lifestyle choice, natural disasters, war/terrorism, aging, life … • Everyone has accessibility needs! • Informed Consent: Participants voluntarily self-identified as: • -- Adult, age 18 or older • -- Individual with access need[s] (as defined by participant) • -- Demographic questions, including regarding type of accessibility need, not asked: on purpose. • Participant recruitment: Institutional Review Board-approved • -- Announcements: Selected approved accessibility-related online discussion lists, accessibility conferences 6/2005-3/06 Perlow - Teacher Education-Israel - June 2007

4. Methodology: Participant Activities • Evaluate: 50 pre-randomized access-related descriptors • Offer, then evaluate up to 20 new accessibility-related terms • Contribute 2-3 model survey attitudinal survey items • Reflect on relationship between language and perceptions; value of research • Research Calendar: April 19, 2005: IRB Approval ; April 19-May 2005: Questionnaire validation, revisions, randomization ; May 2005: document production ; June 2005-March 31, 2006: participant invitation, data collection ; April-May 2006:analysis/publication • Research Considerations: • Informed consent, descriptor list randomization, multiple/as requested formats, researcher self-disclosure • Maximum participant accessibility, privacy, confidentiality, comfort • Maximum time-at most 30 minutes • Pre-stamped/addressed mailing • Participation thank you Perlow - Teacher Education-Israel - June 2007

5. Methodology: Documents / Questionnaires • Pre-Validation by experts in accessibility, special education • Document production in alternative formats: electronic formats (text-only/ASCII), large print, Braille, audiotape; sign language. Documents revised after experts’ evaluation • Questionnaire A: randomized terms: quantitative results: • 50 terms that describe people with access needs commonly used in American English • Participants asked to rate, provide preference for each term • Questionnaire B: quantitative + qualitative results • Participants offered up to 20 new descriptors, then evaluated • Suggested 2-3 items for model survey measuring attitudes toward people with accessibility needs • Participant Perceptions: Impact of language, terminology on class, and value of research Perlow - Teacher Education-Israel - June 2007

6. Methodology: Quantitative Variables • IndependentVariables (IV): Descriptor Qualities • Descriptor Negativity : 1 = negative ; 2 = not-negative by definition • People First Language (PFL) Ex.: “child with autism” = PFL; “autistic child” not PFL 1= not PFL 2 = yes PFL • Descriptor Culture (10 categories): interest because of Questionnaire B participant-selected terms • Response Variables (DV): Rating, Preference Scores Rating: 1=Very negative; 2=Negative; 3=Neutral; 4=Positive; 5=Very positive Preference: 1=Not Preferred=N 2=No Preference=X 3=Preferred=Y Perlow - Teacher Education-Israel - June 2007

7. Toward the Results: The Hypotheses • Negative-by-definition terms receive negative ratings (< 3) • Not Negative-by-Definition terms receive positive ratings(> 3) • Negative-by-definition terms are not preferred (pref. = 1) • Not Negative-by-Definition terms are preferred (pref. = 3) • Not PFL descriptors receive negative ratings (rating < 3) • Yes PFL descriptors receive positive ratings (rating > 3) • Not PFL descriptors are not preferred (preference = 1) • Yes PFL descriptors are preferred (preference = 3) • PFL format increases descriptor preference. But if not negative by definition or PFL, if perceived as euphemisms or politically correct, descriptors negatively rated, not preferred. • Descriptor ratings, preferences differ among cultures. Less neutrality if descriptors familiar.Self-chosen terms, even if negative-by-definition, not PFL, rated positively, preferred. Perlow - Teacher Education-Israel - June 2007

8. Toward the Results: The Hypotheses • Quantitative Hypothesis: In evaluation of accessibility-related descriptors in American English by adults with accessibility needs, there is a significant difference (p < .05) in the rating and preference scores between: • Negative-by-definition and not negative-by-definition descriptors • People-First and Not People-First Language descriptors • Qualitative Hypotheses • Among people with access needs, there is a perception that descriptors have an effect on perceptions of and attitudes toward the class • Negative-by-definition terminology breeds Negative perceptions • Positive terminology breeds Positive perceptions • Qualitative Analysis • Coding of emerging themes using constructivist and grounded theory methodologies (Charmaz, 2004; Glaser & Strauss, 1967; Patton, 2002, p. 128, 487-492; Strauss & Corbin, 1998) Perlow - Teacher Education-Israel - June 2007

9. Selected Results-Questionnaire A - n=30 דירוג-Rating Not Negative Descriptors All Q. A Descriptors Negative Descriptors עדיפות-Preference Not Negative Descriptors All Q. A Descriptors Negative Descriptors Perlow - Teacher Education-Israel - June 2007

10. Selected Results-Questionnaire A - n=30 דירוג-Rating All Q. A Descriptors Yes PFL Descriptors Not PFL Descriptors עדיפות-Preference Yes PFL Descriptors All Q. A Descriptors Not PFL Descriptors Perlow - Teacher Education-Israel - June 2007

11. Results Summary n=30 • Questionnaire A: To a significant degree (p < .05), Negative-by-definition descriptors received negative ratings and not preferred, except for certain descriptors (I.e. blind; Deaf [capital-D] chosen by class members and certain PFL descriptors (I.e. “have hearing loss”) • To a significant degree (p < .05), Not Negative-by-definition descriptors received positive ratings and preferred, except for certain descriptors (i.e. “have differability”) considered euphemisms or politically correct. • Mean rating for Questionnaire A not negative descriptors = neutral • Questionnaire B: A preponderance (91.3%) of Questionnaire B descriptors were negative-by-definition and not PFL. Not negative-by definition and PFL descriptors were positively rated and preferred. • Qualitative Questions: Participants acknowledged influence of terminology on perceptions and attitudes and abundance of negative and disparaging terminology about class members in American English. • Participants: research valuable; appreciated accessibility of research process; unsure how to change status quo, Any suggestions? Perlow - Teacher Education-Israel - June 2007

12. References • Bérubé, M. (1996). Life as we know it: a father, a family, and an exceptional child. N.Y.: Pantheon. • Charlton, J.I. (1998). Nothing about us without us: disability oppression and empowerment. Berkeley: University of California Press. • Charmaz, K. (2004). Grounded theory. In: S.N. Hesse-Biber & P. Leavy (Eds.). (2004). Approaches to qualitative research: a reader on theory and practice. (pp. 496-521). New York: Oxford University Press. • Davis, L.J. (1995). Enforcing normalcy: disability, Deafness, and the body. London: Verso. • Glaser, B. & Strauss, A.L. (1967). The discovery of grounded theory; strategies for qualitative research. Chicago, Aldine Publishing Co. • Patton, M.Q. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks, CA.: Sage Publications. • Strauss, A.L. & Corbin, J. (1998). Basics of qualitative research: techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage Publications. Perlow - Teacher Education-Israel - June 2007

13. רעיונותכם, בבקשה Your Ideas, Please Perlow - Teacher Education-Israel - June 2007

14. Researcher Contact Information • אילנה פרלובEllen Perlow, Ph.D. CHES • Doctoral Student, Special Education • Texas Woman’s University • P.O. Box 424244 Denton, TX 76204-4244 • E-Mail: eperlow@hotmail.com • Dissertation / Study Citation: Perlow, Ellen Jeanne Ilana. (2006). A for Accessibility : Descriptor Preferences of People with Accessibility Needs. (Doctoral dissertation, Texas Woman’s University, 2006). Dissertation Abstracts International, 67, no. 04B, 315. Perlow - Teacher Education-Israel - June 2007