FodnessMemo37

Kevin R. Fodness PhD Candidate Department of Science and Technology Studies Rensselaer Polytechnic Institute

April 7, 2009

Kim M. Cardillo Executive Assistant Office of the Vice President for Research Rensselaer Polytechnic Institute CII 7015, 110 8th Street Troy, NY 12180

Ms. Cardillo,

Attached are the project description and informed consent form for my dissertation, entitled "Disability & Cyberspace: The Path to Accessible Web Technologies for All."

Sincerely,

Kevin R. Fodness

Project Description:

Title: Disability & Cyberspace: The Path to Accessible Web Technologies for All

Summary

This study will incorporate multiple perspectives on the issue of how individuals with disabilities use cyberspace, how cyberspace is constructed for individuals with disabilities, and in what ways the regulatory framework and cyberspace software does not serve the needs of the disabled. The study will examine the assistive technologies that allow the disabled to work with cyberspace, and will examine how well or poorly they serve the needs of the disabled. The data for the study will be compiled using a combination of research and interviews.

The study will examine the process of cyberspace software development from multiple angles, including the education of software engineers at colleges and trade schools, the role of software engineers and managers in website design companies, the capabilities (or lack thereof) of automatic accessibility features such as subtitling videos on sites like YouTube based on speech recognition, and the role of activist organizations working on behalf of individuals with disabilities. The policy and regulatory frameworks that exist will be evaluated based on how well or poorly they serve the community of disabled cyberspace users.

Empirical material for this study will be collected using 60 interviews, two hours in length, with representatives from the categories listed above. Field research will be conducted starting in summer 2011 through spring 2012. As many interviews as possible will be conducted face-to-face at various educational institutions, software design companies, activist organizations, and legislative offices. Interviews will be fully transcribed, returned to the interviewee for review and confirmation, then analyzed and used for relevant quotations.

This study will contribute to the analysis of assistive technologies available to individuals with disabilities, cyberspace design studies, and disability studies. The study will emerge as my dissertation, which will eventually be published as a book.

Response to IRB Questions

1) Title of Proposal: "Disability & Cyberspace: The Path to Accessible Web Technologies for All"

2) Principal Investigator: Kevin Fodness

3) Address: Sage 5706

4) Phone: 518-859-4438

5) N/A

6) Department: Science & Technology Studies

7) Objective: This research and ethnographic study will document and analyze the field of accessible technologies relating to cyberspace, conducting in-depth ethnographic interviews and policy studies to understand the landscape of accessibility features and legal requirements for cyberspace software.

8) Methods: Approximately 60 in-depth interviews (approximately two hours in length) with individuals from educational institutions, software design companies, activist organizations, and legislative offices will be conducted for this study. Interview subjects will be recruited through emails and phone calls that describe the nature, purpose, and research methods used in the study, and will be provided with a copy of the informed consent form. The contact list will evolve as the project evolves, but will start with faculty at Rensselaer Polytechnic Institute, Massachusetts Institute of Technology, and Rochester Institute of Technology; members of the Web Standards Project (webstandards.org); legislators in Washington DC working on disability issues; and employees and managers of web design firms.

9) Effects on the Subjects: There will be minimal physical effects on the subjects, because the the only interaction will be an interview.

10) Measures to Minimize Risk: All interviews will be voluntary. Interviewees will be given the opportunity to be anonymous, to stop the interview at any time, and to decline to answer specific questions. They will also have the ability to retract all or part of the interview before publication.

Audio files of the interview will be stored on Kevin Fodness' laptop computer, backed up to an external hard drive located at his residence, encrypted and password protected using a 1024-bit RSA key, and will not be shared with anyone except for the person(s) hired to transcribe the interviews. The transcribers will be instructed that all interview material is strictly confidential and is not to be shared with anyone. All copies of the interview will be destroyed once the transcript is sent to Kevin Fodness. The computer systems housing the interview materials will be locked up when not in use, and have multiple levels of software security present. Only Kevin Fodness will have access to both electronic and physical copies of interviews and transcripts. All copies of an interview will be destroyed at any time by request of the interviewee. These practices are detailed in the attached informed consent form for interviewees.

11) Likelihood of Harm: Minimal.

12) Documentation of Risks: None.

13) Benefits to participants: Participants in this study will directly and indirectly benefit from development of an analysis of regulation and practice surrounding accessibility technologies for disabled cyberspace users. Results of the study will be presented to educators, software developers, legislators, and activist organizations, as well as disabled cyberspace users themselves, in the form of a book.

14) Alternative Method Not Using Human Subjects: None possible.

15) Qualifications of Researchers: Kevin Fodness is pursuing a PhD in Science and Technology Studies, and has extensive experience working with cyberspace software design and software engineers, as well as members of the educational community. Kevin Fodness conducts interviews according to the code of ethics established by the American Anthropoligical Association.

16) Recruiting of Subjects: Interview subjects will be contacted directly, informed of the purposes of the interview, and given an opportunity to refuse the interview.

17) Confidentiality: The participants will be given the opportunity to define the extent to which their names will be associated with any (or all) statement(s) during the interview, and will be given the right to retract any statement at any time prior to publication of research results. Any statements that participants designate as “off the record” will not be attributed to the participant, nor used in a way that would link their statement to said participant. As is codified in the Informed Consent Form, I will use any such comments only as background information, and will not quote them in either an attributed or unattributed fashion in any of my future work.

18) Specimen of Consent Form: Please see attached “Informed Consent Form.”

19) Preliminary Interview Guide is also attached below.

Informed Consent Form Anthropoligical study of assistive technologies in cyberspace software

Kevin Fodness, Department of Science and Technology Studies Rensselaer Polytechnic Institute, Troy NY 12180 (518-859-4438), fodnek@rpi.edu

Contact information for the Rensselaer Polytechnic Institute Review Board: Chair, Institutional Review Board, Rensselaer Polytechnic Institute, CII 7015, 110 8th Street, Troy, NY 12180

This interview with __is being conducted as part of an anthropological study of the assistive technologies available in cyberspace software. The research will result in public talks, articles, and a book. The interview will be recorded on tape, with the following conditions:

1.Your participation in this interview is voluntary. You may terminate the interview at any time during our conversation. The interview will last approximately two hours. 2.You may ask that the tape be turned off at any time during this interview, and I will turn the tape off. 3.You may designate any comments you make on the tape as “off the record.” You may also designate comments as “off the record” retrospectively, either at a later point in the interview or in the process of approving the transcript. I promise to use such comments only as background information, and will not quote them in either an attributed or unattributed fashion in any of my future work. 4.I will transcribe the tape in part or in full. I will submit any such full or partial transcript to you for your approval. You will be free to edit, clarify, amend, or delete any part of the transcript before returning it to me, having made a copy of the transcript and any changes you make to it for your own files. 5.I will be free to quote from this approved transcript, and only this approved transcript, in my future work. The tape itself will not be made public in any fashion, and can also be destroyed if you so request. The transcript of the interview will not be made public unless you explicitly approve a request to do so. 6.The tape of the interview will be stored on the computers of Kevin Fodness as password protected (1024-bit RSA) encrypted files, and will not be shared with anyone except for the person hired to transcribe the interview. The transcriber has been instructed to consider all transcripts strictly confidential, and to destroy all copies of the interview once the transcription has been transmitted to Kevin Fodness. Once as a digital text file, the transcript will be stored on the computers of Kevin Fodness, again with password protection and encryption. All hard copies of the transcript will be stored in the offices of either Kevin Fodness, which are locked when he is not present. Only Kevin Fodness will have access to both electronic and hard copies of transcribed interviews. All copies of the interview (recorded and transcribed) will be destroyed at any time on the request of the interviewee. 7.You have the right to remain anonymous, and can do so by initializing here:__ _. If you do not choose to remain anonymous, in quoting from the approved transcript in my future work, I may attribute remarks directly to you, but will not necessarily do so. 8.If you have any additional conditions that you would like to add, write them here and they will be considered part of this agreement:

Additional Conditions:

Finally, if for any reason you change your mind about this interview or any of these conditions in the future, I promise to respect any request that you make to me. I will not be able to retract anything that is already in print or in press based on the approved transcript, but I will honor any future request to change any of the terms of this agreement, up to and including complete retraction of the interview and permission to quote from it.

INTERVIEWER date:

INTERVIEWEE address _ _ phone _ email _

Preliminary Interview Guide

Educators:

1) Do you teach your students about designing software to be accessible to individuals with disabilities? 2) Why (or why not)? 3) (If so) What skills are taught? Is designing for accessibility a core component of the course? 4) Who made the decision whether to include or exclude designing for accessibility? Is it department level or course level? 5) What is your sense of the importance of designing for accessibility in the business world?

Software Engineers:

1) Do you design your software to be accessible to individuals with disabilities? 2) Why or why not? 3) In what ways do you make your software accessible? 4) What ways are you aware of in which your software is not accessible? 5) Who made the decision as to whether to program for accessibility or not? Engineers, management, combination of the two? 6) Do you integrate accessibility into your testing process or in user pools? 7) Have you gotten feedback from individuals with disabilities regarding their ability to use your product? What was that feedback like?

Software Engineers who build software that builds software:

1) Do you design your software so that it creates accessible code? 2) Why or why not? 3) In what ways does it enforce or not enforce standards and accessibility? 4) Who made this decision? 5) Do you integrate accessibility into your testing process or in user pools? 6) Have you gotten feedback from individuals with disabilities regarding their ability to use websites (etc) that are built using your product? What was that feedback like?

YouTube folks:

1) Does your software automatically subtitle videos for the deaf? 2) If not, was this something that you considered during the design phase, or as a possible option for future development? 3) What is the current method for subtitling videos? Is it entirely up to the person who uploads them? 4) If individuals must subtitle their own videos, is there a system-level reminder or warning about the fact that unsubtitled videos will not be able to be used by the deaf? 5) Have you gotten any feedback from individuals with disabilities regarding their ability to use your website? What was that feedback like?

Individuals with Disabilities:

1) What is your disability? 2) Is your disability categorized as a disability outside of an IT context? 3) What is your experience like interacting with IT? 4) What accessibility software do you use? 5) Are there particular programs or sites that are easy to use or difficult to use? 6) Have you ever given feedback to a software company or website that is difficult to use? What was the response like? 7) What is your sense as to how well software companies are designing software to address your particular disability?