Disability Oral History Toolkit

Disability Oral History Toolkit

Developed by Fady Shanouda MA, and Karen K. Yoshida PhD, for The

Centre for Independent Living in Toronto (CILT) Inc., with the

Department of Physical Therapy at the University of Toronto

For the Project: “Our Histories: Building leadership and engagement in

the disability community: Lessons learnt from Toronto’s disability

leaders.” Sandra Carpenter and Karen K. Yoshida, 2012

Funding provided by the Ontario Trillium Foundation:

Application ID number: 114548

The Centre for Independent Living in Toronto (CILT) Inc. and the Department of Physical Therapy at the University of Toronto

Disability Oral History Toolkit © 2014

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Produced by the Centre for Independent Living in Toronto (CILT) Inc.

365 Bloor Street East, Suite 902,

Toronto, Ontario M4W 3L4

Canada

www.cilt.ca

© January 2014 The Centre for Independent Living In Toronto (CILT) Inc.



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ACKNOWLEDGEMENTS We would like to acknowledge the support and participation of key individuals in the development of this toolkit. We would like first like to acknowledge the 13 disability leaders who agreed to be interviewed for this project and whose knowledge of the community and the issues were essential to creating this toolkit. It is with immense gratitude that we also thank Fran Odette who edited the toolkit for clear language – making it accessibility to a greater number of individuals across communities. And it is with a deep appreciation that we acknowledge the help and support of the CILT staff, specifically Melissa Graham and Leanne Larmondin for editing the toolkit, and Jamie Wong for designing and creating the digital platform. Special thanks must also go to Catherine Frazee for allowing us to use part of her interview on the website. We would also like to thank Carolina Veliz for her work in compiling and editing the video, Chelsea Jones for audio describing, and Sheena Vert for sign language interpretation on the video. Lastly, we want to acknowledge the financial support of the Ontario Trillium Foundation, (application ID number: 114548), which made the development of this toolkit possible.



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GLOSSARY OF TERMS Access: A principal that focuses on creating inclusion whereby all individuals can participate within the greater society. Accommodations: Specific practices requested by an individual that reduces barriers to her/his participation. Critical Disability Studies: “Disability studies does not treat disease or disability, hoping to cure or avoid them; it studies the social meanings, symbols and stigmas attached to disability identity and asks how they relate to enforced systems of exclusion and oppression, attacking the widespread belief that having an able body and mind determines whether one is a quality human being. More specifically, disability studies names the states of social oppression unique to people with disabilities, while asserting at the same time the positive values that they may contribute to society” (Siebers, 2008). Cross-‐disability: Given the diversity of disability communities, cross-‐disability refers to the practice of engaging different communities for a particular purpose. Disability: There are many definitions of disability. From a critical point of view disability refers to a product of socially created conditions imposed on individuals. Disability Community/Communities: This is not a homogenous community. It is made up of many different communities, which at times share similar values and experiences, but also have different values and experiences. Disabled People/People with disabilities: Throughout this toolkit we will use these terms interchangeably. We have done this in recognition of the different preferences within disability communities, including academic spaces. Inclusion: The idea and practice of ensuring spaces are open, flexible, and encompassing so that all people can come in and participate at their chosen level.



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Independent Living: From a Canadian perspective, Independent Living is founded on the right of people with disabilities to: “live with dignity in their chosen community; participate in all aspects of their life; and control and make decisions about their own lives” (www.cilt.ca).



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TABLE OF CONTENTS

ACKNOWLEDGEMENTS 3

GLOSSARY OF TERMS 4

TABLE OF CONTENTS 6

HOW TO USE THIS TOOLKIT 8

INTRODUCTION 9

SECTION A: DEVELOPING A DISABILITY ORAL HISTORY PROJECT 11

PART 1: DISABILITY ORAL HISTORY 11 DISABILITY RIGHTS MOVEMENT AND DISABILITY STUDIES 11 THE “HISTORY” OF THE ORAL HISTORY APPROACH 11 THE IMPORTANCE OF DISABILITY ORAL HISTORY 12 THREE KEY VALUES TO MAKE A DISABILITY ORAL HISTORY PROJECT ACCESSIBLE 12

PART 2: GETTING STARTED: A DISABILITY ORAL HISTORY PROJECT 14 SELECTING THE TOPIC 14 NARROWING THE SIZE OF THE PROJECT 14 FUNDED AND NON FUNDED PROJECTS: WHERE TO BEGIN 15 CONDUCTING ORAL HISTORY RESEARCH ETHICALLY 17

SECTION B: PREPARING AND CONDUCTING A DISABILITY ORAL HISTORY INTERVIEW 19

PART 1: ADDRESSING AUTHORITY, DISABILITY, AND EMOTIONAL RESPONSES 19 THE SHARED AUTHORITY AND COLLABORATIVE PROCESS 19 WAYS OF SPEAKING ABOUT DISABILITY 20 APPROPRIATE RESPONSES TO EMOTIONAL MOMENTS 20 THE INCORPORATION OF PERSONAL OBJECTS INTO A LIFE NARRATIVE 21

PART 2: SELECTING, LOCATING, AND CONTACTING PARTICIPANTS 23 OUTREACH AND RECRUITMENT 23 CONDUCTING A PRE-‐INTERVIEW 24 ISSUES OF ACCESS AND ACCOMMODATIONS 26

PART 3: COMPOSING QUESTIONS 27



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DISABILITY ORAL HISTORY QUESTIONS 27 PART 4: CONDUCTING AN ACCESSIBLE INTERVIEW 29

EQUIPMENT SET UP TIPS* 29 BEFORE STARTING THE INTERVIEW 30 DURING THE INTERVIEW 30 REMEMBER THESE TIPS WHEN ASKING QUESTIONS* 32 DOING A POST-‐INTERVIEW 33

SECTION C: CREATING A FINAL PRODUCT 34

PART 1: TRANSCRIPTS 34 TRANSCRIBING THE INTERVIEWS 34

PART 2: READING THROUGH THE DATA 35 PART 3: PARTICIPANTS CONSENT FOR FINAL PRODUCT MATERIALS 36

TO EDIT AND REARRANGE DIFFERENT INTERVIEW SEGMENTS 36 PART 4: CREATING A FINAL PRODUCT 38

REFERENCES 40

APPENDIXES 43

APPENDIX 1: BIBLIOGRAPHY 43 APPENDIX 2: CONSENT FORMS 45

SUB-‐APPENDIX 1 -‐ EXAMPLE OF AN INFORMATION AND OVERALL CONSENT FORM 46 SUB-‐APPENDIX 2 – EXAMPLE OF AN AUDIOTAPE CONSENT FORM 50 SUB-‐APPENDIX 3 – EXAMPLE OF A VIDEOTAPE CONSENT FORM 52 SUB-‐APPENDIX 4 – EXAMPLE OF A HONORARIUM FORM 54

APPENDIX 3: ADVERTISEMENT 55 APPENDIX 4: INITIAL COMMUNICATION WITH PARTICIPANTS 56 APPENDIX 5: COMMUNICATION WITH INTERESTED PARTICIPANTS 57 APPENDIX 6: ROAD MAP 59 APPENDIX 7: INTERVIEW GUIDE 60 APPENDIX 8: EQUIPMENT SPECIFICATIONS 65 APPENDIX 9: POST-‐INTERVIEW COMMUNICATIONS 66



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HOW TO USE THIS TOOLKIT This guide can be used by academics and community individuals interested in using an oral history approach when looking at the lived knowledge of people with disabilities or other communities whose stories have not yet been heard. The guide is divided into three different sections: Section A: Developing a disability oral history project Section B: Preparing for and conducting a disability oral history interview Section C: Creating a final product There are different parts of this toolkit that might be more relevant depending on your experience, approach and the community you plan on working with. For example, you may already have experience using this approach, and therefore, you might want to focus on the content addressing disability, access, and accommodations, especially If this is your first time working with members of the disability community; Section A, Part 1, and Section B, Part 1. These sections are important to conduct a project that is ethical and respectful of people with disabilities. If you are experienced working within the disability community, we suggest you might want to review the sections on disability oral history methods; Section A, Part 2, Section B, Part 2, 3, 4, and Section C. This toolkit is written in clear language and in a larger font so that it is accessible to a diverse group of people. Throughout the toolkit you will find examples bolded. We are interested in learning how you are using the toolkit, i.e. sharing it with colleagues, using it in a course, etc. We welcome feedback from you about the toolkit. Karen K. Yoshida [email protected]



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INTRODUCTION

We are a group of academics and community people who have come together to prepare this toolkit to assist individuals interested in creating an oral history project that is inclusive or reflective of a ‘disability community’. We all have stories to tell and we who have the lived experience know our stories best. But how do we capture these stories? This toolkit was part of a larger oral history project conducted by Dr. Karen K. Yoshida, PhD. at the University of Toronto, in partnership with Sandra Carpenter, Executive Director of the Centre for Independent Living in Toronto (CILT) Inc. The project entitled: “Our histories: Building leadership and engagement in the disability community: Lessons learnt from Toronto's disability leaders”, applied the oral history approach and methods discussed throughout this toolkit. The underlying belief of this project was that people with disabilities have something valuable to say and to contribute. A disability oral history approach listens to the stories related to a person’s sense of self and their perceptions and actions within a particular time and place in history. As a result of our own experience, we have come to believe that oral history methods provide communities with the opportunity to learn from disabled people’s stories of struggle, achievement, activism, and change. This toolkit also uses a critical disability studies perspective. It is intended to be used by individuals and organizations across Canada and internationally to create ways by which people with disabilities can share their stories. This toolkit focuses on the importance of access and accommodation when working with disabled people in producing their life narratives. What makes our toolkit unique is the focus on providing individuals with the information and skills needed to carry out a disability oral history project, including how to provide access and accommodations needed by either interviewee and/or interviewer. In this toolkit, you will learn:



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• What is an oral history approach • How to prepare for doing a disability oral history project, detailing the

importance of choosing a focused topic (and purpose of the project), funding, and personnel;

• Considerations related to access and accommodations when conducting interviews with diverse voices within the disability community;

• What are the roles of the interviewee and interviewer, focusing on what it means to share responsibility as the researcher with the people you are researching when creating an oral life history narrative;

• Developing interview questions; • The important elements of interviewing in an oral history approach; • Equipment needed in doing oral history interviews;

• And different ways or methods for sharing the research. For more information: There are lots of great resources on oral history including entire centres dedicated to it both in the United States and Canada. Appendix 1 lists references to good journal articles you might want to read, and many of the authors are from organizations that have become leaders in doing this work.



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Section A: DEVELOPING A DISABILITY ORAL HISTORY PROJECT

Part 1: Disability Oral History

Disability Rights Movement and Disability Studies The disability rights movement as we know it, emerged from the civil rights movement in the United States during the 1960s (Dejong, 1979). The actions of disabled Americans during the civil rights movement influenced the Canadian disability movement, and yet, our rights movement has its own history and accomplishments (Driedger, 1989). In 1982, the Charter of Rights and Freedoms recognized the need for people with disabilities to receive equal protection under the law. Other landmark events include the International Year of Disabled Persons in 1981 and the ratification of the United Nations Convention on the Rights of Persons with Disabilities in Canada in March 2010. Despite these legislative gains, disabled people continue to fight for equalities: opportunities to education, work, and housing; freedom from neglect, abuse, and violations of individual rights; proper access to public transportation; accessible architecture and physical environment. This movement is critical of the ways in which community and society has been set up and reveals the barriers that people with disabilities face which are not only architectural, but also about people’s attitudes and the lack of political power. All of these barriers work together to prevent full access of people with disabilities within society.

The “history” of the oral history approach Oral history has been an approach historians have used for centuries, collecting the accounts of bystanders who witnessed events. However, collecting oral accounts of narrated memories for the purposes of analysis first started in the United States in 1948, in New York City, at Columbia University by Alan Nevins



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(Thomson, 1998). The shift towards the use of oral history methods, as Thomson (1998) argues, was a realization that memory was an important source of information for scholars. Over the past 60 years, the methodology has become popular and there are currently six centres in North American dedicated to the study of the approach. Concordia University (The Centre for Oral History and Digital Storytelling), currently houses the only oral history centre in Canada.

The importance of disability oral history Karen Hirsch argues that disability oral histories often leads to a "shift of focus", highlighting points of views that are generally ignored, and as a result, makes them central (1995, p. 2). She suggests that disability oral histories allow individuals to find their voice and, “lead[s] to a new view of local and social history, and… help[s] create a deeper understanding of cultural conditions which affect everyone” (Hirsch, 1995, p. 2). The history of people with disabilities is essentially not documented, especially from the perspective and voice of disabled people (Longmore and Umansky, 2001). Oral history creates the space for disabled persons to speak for themselves, acknowledging the expertise within disability communities. Lastly, by exploring these stories, we can continue to support disability communities, creating a positive disability identity and shared culture.

Three key values to make a disability oral history project accessible 1. We can assume that everyone who lives with a disability has a unique

experience. Therefore, it is important to include a diversity of ‘disability’ experiences.

2. People with disabilities are the experts of the “disability experience”. Allow

persons with disabilities to express their experiences and knowledge directly. This increases their visibility as experts of, and contributors to, the communities where they live.



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3. There is a famous slogan that activists of the disability movement chanted in

the United States, and which originated in South Africa: “nothing about us, without us” (Charlton, 1989). We believe in the value that people with disabilities must be the leaders and the researchers of our history. We, therefore, encourage disabled people to take up this toolkit and conduct a disability oral history project within their community. A disability oral history project must be a process of collaboration and partnership.



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Part 2: Getting Started: A Disability Oral History Project

To get started, you need to decide on the topic and the size of the project, and whether to apply for funding. In addition, you will also need to think about how to conduct a project ethically.

Selecting the topic One of the most important steps before beginning the project is to select a topic you are interested in. Narrow down the topic to a manageable size based on the resources you have. Speak to key people who are part of the community you are wishing to do the project with to find out if they think the topic is important and relevant to the community.

Narrowing the size of the project Disability oral history projects can range from small local projects, larger community projects and can even be national in scope. There is value in projects that focus on one or a few individuals’ stories. The scope of the project is dependent on the available resources. The main resources are financial support, number of available staff, and access to appropriate equipment. As well, think about how long you have to complete the project depending on whether the project is funded, and the time commitments of people involved.



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Funded and non funded projects: Where to begin

Getting your project funded. Before getting started on the project, take the time to become aware of the different funding sources and what it takes to get it funded i.e. eligibility criteria. Applying for funding can take a considerable amount of time. Being as clear about the project and its scope before you begin writing will be helpful. First, research different funding agencies so you can decide which one seems to be the best fit with what you are hoping to accomplish with your project. One option is to arrange to speak to a funding officer from the funding agency and talk to them about your project. Together you can talk about the project, determine what the format is and how you can prepare the application to meet the funder’s criteria. Second, have others who have prepared funding applications look over your application to make sure you have clearly answered the questions.

Non-‐funded projects. A project can still be valuable and successful even on a limited or ‘shoe-‐string’ budget. Funding does not affect the quality of stories or experiences that you will be collecting. There are lots of creative ways to fundraise such as carwashes, bake sales, including other funding options.

Other funding ideas. There are many funding ideas to consider available outside the traditional options of government or community agencies. We urge you to look at the potential for support and/or funding through online crowdsourcing and crowdfunding.



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Crowdsourcing: allows you to share your project goals with a larger online community, potentially connecting you with individuals who can support the project by donating (or hiring at a discounted rate) their specific skill sets. This might be a good idea if a skilled transcriber wants to donate their services or if you need assistance advertising the project when looking for participants. The list below is of the most popular crowdsourcing websites: Odesk: https://www.odesk.com/ Cloud Crowd: http://www.cloudcrowd.com/ Agent Anything: http://www.agentanything.com/ Crowdfunding: is very similar to crowdsourcing except that the main goal is to raise funds to run the project. There are various websites now dedicated to online funding and we urge you to consult their terms and conditions before applying. Also consider using crowdfunding to provide funds that would allow you to transform your data into a creative piece – play, movie, painting, sculpture etc. The list below is of the most popular crowdfunding websites: Kickstarter: http://www.kickstarter.com/ Indiegogo: http://www.indiegogo.com/ Projexity: https://projexity.com/ Crowdrise: http://www.crowdrise.com/ Givezooks: https://www.givezooks.com/



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Conducting oral history research ethically If your oral history project is not attached to a college or a university, an ethics review is not necessary. However before proceeding, check out some of the university or colleges ethics websites that outline the process for an ethics review. This will allow you to consider issues of safety and privacy people might need addressed about the project. Projects that have members who are attached to a university or college department need to undergo an “ethics review”. An ethics protocol is meant to ensure that the project is carried out with minimal “risks” to the person being interviewed. As well, it outlines what considerations should be taken to ensure that the data collected is stored, secured and that the interviewee’s information is kept confidential. Regardless of whether it will be required for your project, ethics will become a factor when writing up interview, videotape, and audiotape consent forms. Both interviewers and interviewees will require written agreements that both will sign to ensure that interviewee’s stories are secure. An example of the consent forms in this project is in Appendix 2, Sub-‐appendix 1-‐4. Each university/college has its own ethics review guidelines, and we suggest that you review these guidelines on their website for more details. With the university team member, consider meeting a member of the Ethics Review Committee. This meeting allows you to talk about the project and its scope, and how they can best support you to produce a successful ethical protocol. An “ethics protocol” can take several weeks to prepare. Once it has been submitted, it can take up to 3-‐4 weeks or longer to get the protocol approved. If the Review Committee has questions, you may be asked to review their feedback and resubmit. Include this in your timelines and work plan schedule as you



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proceed with the project. Remember you will not be able to recruit or conduct any interviews before receiving approval from the Ethics Review Committee.



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Section B: PREPARING AND CONDUCTING A DISABILITY ORAL

HISTORY INTERVIEW

Part 1: Addressing Authority, Disability, and Emotional Responses

There are four key elements to keep in mind that will help you create a positive space for people to share their stories:

• The shared authority and collaborative process;

• Ways of speaking about disability, and learning how to recognize different perspectives;

• Appropriate responses to emotional moments; and,

• The incorporation of personal objects into a life narrative.

The shared authority and collaborative process Interviewers, in most cases, hold more power than interviewees. Interviewers have to recognize a power imbalance between themselves and the interviewee. To reduce the power imbalance, interviewers need to share the space and power with the interviewee. This “shared authority” is accomplished by allowing interviewees to discuss and direct how their life narratives are presented. On the part of the interviewer, she/he will communicate with participants about the interview process, and answer any questions thoroughly posed by the interviewee. On the part of the interviewee, she/he will answer questions in a way that best suits them, may refuse to answer questions, or may offer other information not necessarily asked by the interviewer.



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Ways of speaking about disability Any disability oral history interview will involve a discussion on disability; therefore, interviewers need to approach the interviewee respectfully and thoughtfully. Language can be difficult when speaking about or discussing disability. Participants may never ‘name’ disability in the interview. History does affect and shape the way people speak about disability. It is through these stories that we learn about disability in the past; including the language that was used to describe disability and people with disabilities. Interviewers should ask about the language participants use when they speak about disability. What language you use to describe disability will depend on the interviewee, the topic under discussion, and the character and feel of the question (and overall interview), and your own disability perspective. In addition, how people acquire their disability might affect what they speak about. We found in our study of people who contracted polio prior to 1955 that participants never referred to themselves as disabled, preferring to call themselves a ‘person with polio’ (especially when describing their childhood) (Yoshida et al. 2013). The purpose of oral history interviews is to capture multiple histories from varying sources. In order to capture stories and experiences of varying perspectives appropriately, interviewers must first be clear about their own understanding as someone who lives with or without disability. Interviewers who recognize this will be more likely to ask questions that will allow the interviewee to provide a more comprehensive response.

Appropriate responses to emotional moments An oral history approach is intended to bring voice to our stories. As a result, participants may become emotional while remembering and speaking about their



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experiences. In telling a story, the interviewee may become emotional and the following will be helpful for you to support the individual: • While emotional issues arise for the teller, this is not therapy. Verbal

validation of people’s emotions is important. Provide some support through active listening.

• Ask the participant if they would like to stop recording or if they would like to continue. If they choose to continue, listen carefully without interrupting the participant.

• If the person would like to stop, stop the interview immediately. Allow some time to pass and then ask them if they would like to continue, if they would like to discuss something different or if they would like to stop the interview.

• As the interviewer, you are bearing witness to this person’s story. As the

interviewer you have an ethical responsibility to support the participant during the interview and post interview.

• If the interview has brought up some difficult feelings for the person during or after the interview, ask if they would like to speak to a qualified individual. Provide them with resources describing different support services within your community.

The incorporation of personal objects into a life narrative Personal or meaningful objects can be a bridge to memories of specific accounts or events in people’s lives. Depending on the themes discussed during the interviews, consider asking the interviewee at the time of the pre-‐interview to bring in a personal object that reflects the topic. Personal objects can be used to begin and further stimulate conversation. For example, the interviewer may ask, “What is the importance of the object you are showing me?”



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In the activist history of people with polio (Yoshida et al., 2008-‐2013), leg braces, a prosthetic calf muscle, a child’s knitted sweater, photographs, toys and letters all became a source for participants to remember forgotten memories, traditions, views on the world and people. Deetz (1996) has written about the importance of studying the small things that are so often forgotten. Disability history needs to maintain these objects. In this way, ordinary objects take on different meanings and representation that are important to individuals and communities. Retaining these objects along with oral history narratives allows for the development of rich and diverse disability histories within our communities.



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Part 2: Selecting, Locating, and Contacting Participants

Outreach and recruitment Participants are at the heart of all research projects – they are the project! Recruiting participants can occur in a number of different ways. This process might require making connections with various networks. Make contact with key people in the community that you are interested in working with. Establish one contact person or ‘informant’. Ideally this person should be part of the project from the beginning. The informant can assist with locating potential participants, explain the purpose of the project, describe the benefits of participating and, in the end, recruit them to the project. The informant is usually a member of the community, who has many personal and professional connections within the community. Contact community disability organizations that represent the disability group(s) you are researching. These organizations usually have ways of communicating with their members, through a website, listserv, newsletter, or a bulletin board. Ask if they would be willing to advertise for the project to encourage participation. An example of an advertisement is in Appendix 3. There are a number of ways to do outreach. One is through email, phone calls, or face-‐to-‐face introductions. You can also reach people via posting notices in locations where people receive services or participate in social or recreational activities. Include information about the project, the contact person and how they can be reached directly. Include a phone number and email address. If you are working with the Deaf community, include a TTY number if possible. Upon contacting potential participants, discuss their preferred method of communication and how they wish to be contacted in the future. An example of an email to send to potential participants is in Appendix 4.



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When using different recruitment approaches, ensure that there is a way that a potential participant can contact you if they are interested in participating in the project or want to get more information. If you include a phone number, the outgoing phone message should indicate the interviewer’s name, the name of the project and that a message can be left privately. Timely follow up is very important and lets the potential participant know you are interested in making contact. When the participants confirm their interest in participating in the study take the time to answer their questions and address their concerns. After this, review the study criteria with the person, outline your role as researcher/interviewer and their role. Discuss the time commitments that are part of the interviews. Also discuss the location of where the interviews will take place, including street address and cross streets. Schedule an appointment to meet with them in person or by phone to conduct the pre-‐interview. Should the person change their mind or not wish to continue, thank them for their time. Let them know that they can email or call if they reconsider. An example of a response to interested participants is in Appendix 5.

Conducting a pre-‐interview Pre-‐interviews are essential to developing a relationship to the interviewee as part of a successful interview. The pre-‐interview can take place by email, over the phone or in person. You should also use the pre-‐interview to determine if the interested participant is eligible for the project. Also, discuss the accommodations needed for the interviewee, and if needed, the interviewer. The following list* can be accomplished during the pre-‐interview:

• To meet and establish a rapport with the interviewee.



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• To explain and discuss the purpose of the project. • To explain issues of confidentiality (privacy, revealed identity, option of

choosing a pseudonym).

• To review the logistics of the interview (length, the meeting place and time, etc.)

• To collect basic factual information about the interviewee, if needed (for example: date of birth, address, preferred method of contact, etc.).

• If videotaping, discuss with participants, what is appropriate to wear for a quality video recording (wear solid-‐coloured shirts: navy blue or dark green).

• Be open to answer any questions that the participants might have. (*This list is taken and adapted from, General Interview Guidelines for CURA Life Stories Project in conjunction with Concordia University, The Centre for Oral History and Digital Storytelling, 2009) In the addition to the above list for a pre-‐interview, the following is important to discuss with participants involved in a disability oral history project. • Ask participants about personal objects that relate to the project (for example:

photos, meaningful objects, newspaper articles, etc.). • Before the interview, revisit with the person what accommodations the person

being interviewed will need so she/he can participate and in her/his preferred mode of communication, etc. This eases the responsibility of the person needing the accommodation to be in the position of asking. Also, if accommodations are needed for the interviewer, this should also be discussed with the interviewee during the pre-‐interview.



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Issues of access and accommodations Accommodations may include:

• Accessible interview locations (accessible buildings and rooms, but also

locations accessible by public transit)

• Arranging taxis and other modes of transportation

• Scheduling translators, intervenors, sign-‐language interpreters, and attendants.

• Accessible consent forms: larger font consent forms, braille consent forms,

consent forms accessible on various assistive software’s including screen readers, and consent forms in clear language.

• Reading consent forms out loud (to participants who ask)

• Shorter interview sessions (e.g.: two 45-‐minute sessions)

• Augmentative and alternative communication (AAC) or other devices to assist in communication

• Asking questions using clear language

• Fragrance sensitivity

• Awareness of light and/or sound sensitivities

Part of making the interview accessible is meeting the person where they feel safe and comfortable. This may include someone’s home or place of work.

We recommend meeting interviewees in their home; however, many may decide to hold interviews in other locations at different times of the day.



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Part 3: Composing Questions

Disability oral history questions The oral history questions you prepare should reflect the goals of the project. Create a list of questions or ‘interview guide’, which the interviewer can refer to during an interview to introduce a topic or issue participants have not yet discussed. You might prepare questions around keywords or phrases in your topic that should help interviewees recall the past and encourage them to tell stories. The ways in which questions are asked can affect the kinds of responses you will get. Here we demonstrate how to create questions: Open-‐ended questions: these kinds of questions encourage people to tell stories and usually start with, “tell me about…”, “can you describe…”, “can you give me an example…”, “tell me a story about that…”, and, “your thoughts on…” etc. Close-‐ended questions: are usually factual questions and they are asked in an effort to discover specific data, such as a place, a time or a person. Usually start with: who, what, where, when, and how. Introduction questions: tend to be asked at the beginning of interviews. Transition questions: are usually asked in order to shift focus from one topic to another, e.g. “We have talked about your earlier life, would you like to talk about your schooling experiences?” And then ask a question. Conclusion questions: bring the interviewee back on topic and allows for summary statements to be made.



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For example, in this project, we concluded the interview by asking participants some of these questions:

• Reflecting on your life to now, what leadership or community involvement has been the most fulfilling to you? Why?

• Is there anything else that you would like to add based on what we talked about or not?

You may/may not want to give the interviewee the questions in advance as it might affect spontaneous or unrehearsed responses. It can seem less like a conversation when people are too prepared (Baylor University Institute for Oral History, 2011b). Instead prepare an outline of topics that reflect the focus of the project, which you will cover in the interview. This will serve as a guide or “road map” for directing participant’s attention (Baylor University Institute for Oral History, 2011b). An example of a road map developed in this project is in Appendix 6. However, a general outline of topics (or road map) may not be enough information for the interviewee to reflect upon and prepare for the interview. Provide the list of questions if the person requests it. Before the interview, talk with the interviewee to address any concerns they may have. An example of some of the questions asked in this project is in Appendix 7.



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Part 4: Conducting an Accessible Interview

Oral history interview session(s) can take place over many days with several hours of interview for each participant. The general rule is that it takes as long as required. We tell participants that interviews could be as long as 2 hours, but found that most interviews lasted for 3 – 4 hours (over several days).

Equipment set up tips* There are many ways that a researcher can document people’s stories. This might take the form of having the person tell their story in front of a camera while also recording their voice. Appendix 8 lists the equipment we used in the project attached to this toolkit.

• Interviewers must be respectful of the interview space (especially if the space

is the participant’s home)

• Ask before moving furniture or plugging and unplugging lamps and electronic equipment.

• Use lots of light; but don’t overdo it. You do not want to flush out the

interviewees face or background. Natural lighting is not always best. Use the overhead lighting in the space and lamps to provide a warm light near participants face.

• Use a backdrop that does not distract from the participant.

• The camera should capture a participant on an angle and from the waist up. Discuss with participant how they would like to be presented on the video before recording the interview.



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• Use a camera that has a LCD screen (which pivots) in order to show and/or describe to participants what the final image would look like.

• If there is an interpreter, ask the participant if they wish to have them video

recorded or only have their voice captured on audio. The interpreter should also be comfortable during the interview

• Finally, the interviewer should take the time to find a comfortable place directly in front of the participant and beside the video equipment; the interviewer should continuously monitor equipment. Explain to the participant that you will be looking at the camera to ensure it is running smoothly and may be taking notes, to use later during analysis.

Before starting the interview

• Explain the purpose of the project and the nature of the interview.

• You must inform the interviewee at the outset that they are free to answer questions any way they wish and that they may refuse to answer any questions, or withdraw at any time.

• Remember to ask participants when they would like to take a break.

• Check in with the participant making sure they are comfortable with the arrangement – also do this during the interview.

During the interview

• Interview questions should be asked chronologically, (unless participants bounce around between times and topics and if so, interviewers should adjust accordingly) starting with participant’s parents, grandparents, where they were born, etc. Conversation will flow after the first few questions. Remember



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this is a conversation so be attentive to what participants are saying and respond appropriately.

• During the interview use unstructured, open-‐ended and conversational

questions

• This is how best to ask questions during an oral life history interview to encourage a conversational flow (taken from the website http://www.baylor.edu/oralhistory, Workshop On The Web: Introduction To Oral History, Baylor University Institute for Oral History):

• Ask open-‐ended questions. o Tell me about . . . o Why . . . ? o Why not . . . ? o How . . . ?

• Probe for details.

o Describe . . . o Explain . . . o How often . . . o Tell me more about . . .

• Restate or summarize. o You said . . . Tell me more about that. o Let me say that back to you and see if I understand. You said . . .

• Ask for definitions and clarifications.

o Tell me what . . . means. o What is . . . ? o I know what . . . is, but future generations may not. Please tell me what

a . . . was and how it was used.

• Follow up. o What else . . . ?



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o Who else . . . ? o What other reasons . . . ?

• Turn things around. o Some people say . . . What do you think about that?

Remember these tips when asking questions* • Avoid leading questions that reveal your biases and suggest you have already

formed an opinion of what the answer might be.

• Ask one question at a time.

• Be prepared to go off topic. After allowing some time, gently bring the participant back to the subject.

• Use the silent question. Keep quiet and wait.

• Try to get “personalized”, rather than “generalized” life stories.

• Ask follow up questions of participants, especially if they ask for validation through phrases such as “You know what I am talking about”, or, “You understand where I am coming from”. For example, a follow up question might ask, “I think I might know what you’re referring to but can you describe your experiences to me as they might be different from others or mine.”

• Remain close to the research topic.

• Be attentive to the interviewee and be a sensitive and empathetic listener.

• Acknowledge the participant by nodding or gesturing that you are attentive to the story they are sharing.

• Learn to be accepting of silences, pauses and flow of emotions.



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• Assume that you do not know what the participants are going to say next.

• Participants might make statements that you might not agree with. Remain open to their point of view and do not argue with the interviewee.

• Close with a thoughtful question(s) that allow for reflection and end the

interview with an expression of appreciation.

• Remain attentive to the interviewee after the interview is done.

• Give people the chance to determine how they want their lives or experiences to be described.

(*These tips were developed from our experiences, and/or adapted from the website, “Composing Questions, Workshop On The Web: Introduction To Oral History,” Baylor University Institute for Oral History, 2011b, and, “General Interview Guidelines for CURA Life Stories Project,” Concordia University, The Centre for Oral History and Digital Storytelling, 2009):

Doing a post-‐interview A post-‐interview should take place 24 hours after completing an interview. After the interview, contact the participant with the intention of sharing your appreciation for their participation in the project. Let them know of any important dates, such as, when transcripts and video copies of interview(s) will be available for their review (if this is known), and if there is other time commitments related to their participation in the project. Ask for permission to contact them should there be a need to clarify any questions that might arise after the first viewing of the interview. An example of an appropriate post interview response is in Appendix 9.



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Section C: Creating a Final Product

Part 1: Transcripts

Transcribing the interviews

After each interview, you should transcribe the interview verbatim. Verbatim means to include everything the interviewee says including their pauses, laughter and other types of responses. If the project has funds available, hire a professional transcriber who will be responsible for transcribing the interviews. If there is no money, you will take this task on yourself. Having the chance to transcribe the interviews provides interviewers with the opportunity to begin analyzing the work. If you are transcribing the interviews, make sure that the way in which the information is shared with the transcriber is secure. Do not send information via email. Use a password protected USB or portable hard drive.



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Part 2: Reading Through the Data

Once the data has been collected, the next step is to analyze or evaluate the data. The analysis will be different for projects that use a theoretical lens to the data. For community projects, analysis should begin by recalling the project goals – the topic focus – and the research questions that were formulated when establishing the project. This should lead researchers to a content analysis of interviews, looking for the answers to these questions and the participant’s stories that help illustrate these experiences. This is an example of how we analyzed the data for the project attached to this toolkit: • Purpose:

o We are attempting to collect the stories of disability leaders in Toronto for two reasons: to ensure that their stories and experiences are captured forever, and so that we can develop a disability youth engagement toolkit to engage young persons with disabilities to learn the skills of leadership from their predecessors

• Research Questions: o What is leadership? How did participants become leaders? What are

some of the things that leaders have done for members of the disability community in Toronto? What facilitated leadership in participants’ lives?

• Content Analysis:

o We found that participants who were leaders had parents who were involved in their communities and who shared with their children the importance of giving back to the community. Participants also discussed the influences of other people with disabilities, major disability events in the country (Supreme Court of Canada case: Latimer), and in many cases participants articulated that they became leaders because services they needed were not available and so, they fought to bring them into existence.



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Part 3: Participants’ Consent for Final Product Materials

After transcribing each interview, send the transcript of the interview to each participant so they can review the information. At this time let the participants know they can remove any details they no longer want as part of the record. As well, this is the time when the participant can identify and remove information that might reveal their identities. As well, any information or references that participants ask to be removed from the written transcript should also be removed from the video and audio recording of the interview. Lastly, it is recommended that the data be transferred to different devices that are secured and only accessed by the researcher. Save 2-‐3 copies of the data (interview and other information, including videotape and audiotape) onto an individual external portable hard drive. Make sure the hard drives are then stored in a secured place i.e. locked fireproof cabinet in a location that is also locked. It is often required that information is kept for up to 7 years after the project has been completed.

To edit and rearrange different interview segments Editing interviews is important for two reasons:

• To delete unwanted scenes from the final product • Participants, after reviewing the content, may ask for segments to be

deleted from the final product

Editing will also be important if your method of communicating the data is in video format, versus written or spoken communication. iMovie, a commercial software on most Apple Computers, has the capability of editing audio and video. Listed are some other popular video and audio editing programs:



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• FinalCut Pro

• Final Draft • Sound Track Pro • DVDStudio Pro • Avid Media Composer • Podcast Capture

These programs can be quite expensive and you might want to consider contacting a local design or film school or local high school to see if they would be willing to share access to these programs by allowing you to edit your content during off hours. You might also consider hiring a design or film student, with the incentive of adding to their portfolio, to help you navigate the intricacies of these programs.



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Part 4: Creating a Final Product

Communicating the data is the next, and final, step in the process. There are many options available to researchers to disseminate information. You will produce a product from the data; what shape the product takes will be determined after viewing an analyzing the data. However, we recommend that you decide on dissemination material when designing the project. Funding, timing, staff or volunteer availability will all factor into what format you choose for the final product. Examples of different final products from a community level approach and academic approach are provided below: Community final product materials: • The focus of community level project would be to spread knowledge and

contribute to the local history of the disability community.

• Final product materials at a community level include: a research report and summary. Develop other material like brochures, newspaper, magazine, newsletter and website articles. Other options include writing up personal narratives or personal journals, publishing in local history books or writing a local disability history book. In-‐person dissemination can range from small community presentations, to larger professional conferences, to meetings or conventions on disability history in other parts of the world. Lastly, consider writing up narratives in partnership with the interviewee, in a co-‐constructed narrative.

Academic final product materials: • The focus of an academic level project would be to contribute to the larger

disability community, locally and globally through publications and other literature.



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• Final product materials include: peer-‐reviewed conference presentations, poster competitions, journal articles, book chapters, manuscripts, etc.

Finally, consider transforming data into a final product that can be shared with a broader audience. The data could be transformed into a creative piece – play, movie, painting, sculpture, etc. There are multiple possibilities available when social media is considered as part of the communication process. With approval from participants, you could make the video interview (or segments of it) available on YouTube. Or one could begin a blog on Wordpress.com (a free website generating company) and advertise the content on Facebook, Twitter and LinkedIn. If there are no ethical issues to distributing your data through social media, it should be considered as a potential to increase the visibility of your work to the public both locally and globally. It also makes the product accessible, allowing for individuals to view the content at home, in accessible formats, and with the ability to participate, comment, and share.



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REFERENCES Baylor University Institute for Oral History. (2011a). Composing questions. Workshop on the web: Introduction to oral history. Retrieved from http://www.baylor.edu/oralhistory Baylor University Institute for Oral History. (2011b). Creating an interview outline. Workshop on the web: Introduction to oral history. Retrieved from http://www.baylor.edu/oralhistory Columbia University Center for Oral History. (2005). The telling lives oral history curriculum guide. Albarelli, G. & Starecheski, A. Retrieved from Charlton, J., I. (1989). Nothing about us without us: Disability oppression and empowerment. Berkley and Los Angeles, California: University of California Press Charlton, T., L. (1985). Oral history for Texans. (2nd Edition). Texas: Texas Historical Commission. Retrieved from http://www.baylor.edu/oralhistory Columbia University Center for Oral History. (2009.) An oral history bibliography: A research guide by the Columbia university center for oral history. Elizabeth, G., Bell, K. & Rosenfeld, J. Retrieved from http://library.columbia.edu/indiv/ccoh/education/resources.html CURA Life Stories Project. (2009). General interview guidelines for CURA life stories project. Retrieved from http://storytelling.concordia.ca/oralhistory/resources/tips.html CURA Life Stories Project. (2009). Sample life-‐story interview questions. Retrieved from http://storytelling.concordia.ca/oralhistory/resources/tips.html CURA Life Stories Project. (2009). Emotional and psychological support guidelines for the life stories CURA project. Retrieved from http://storytelling.concordia.ca/oralhistory/resources/tips.html



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Deetz, J. (1996). In small things forgotten: An archaeology of early American life. New York: Anchor Books. DeJong, G. (1979). Defining and implementing the independent living concept." Archives of Physical Medicine and Rehabilitation, 60, 435-‐446. Driedger, D. (1989). The Last Civil Rights Movement: Disabled Peoples' International. New York: St. Martin's. Hirsch, K., & Hirsch, J. (1995). Self-‐defining narratives: Disability identity in the postmodern era. Disability Studies Quarterly, 15(4), 21-‐27. Human Resources and Skills Development Canada. (2006). Disability in Canada: A 2006 profile. (ISSD-‐042-‐02-‐11). Gatineau, QC: Canada. Publishing Services. Longmore, P. K., & Umansky, L. (Eds.). (2001). The new disability history: American perspective. New York: New York University Press Malone, C. Independent living movement: A cross-‐disability perspective. Alliance for Equality of Blind Canadians. Retrieved from http://www.blindcanadians.ca/publications/cbm/24/independent-‐living-‐movement-‐cross-‐disability-‐perspective Portelli, A. (2006). What makes oral history different. R. Perks & A. Thomson (Eds.), The oral history reader (2nd ed.), (33-‐42). London, UK: Routledge Siebers, T. (2008). Disability Theory. Ann Arbour: The University of Michigan Press. Thomson, A. (1998). Fifty years on: An international perspective on oral history. The Journal of American History, 85(2), 581-‐595. Willig Levy, C. (1998). A people’s history of the independent living movement. Retrieved from http://www.independentliving.org/docs5/ILhistory.html



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World Health Organization. (2011). World Report on Disability. (ISBN 978 92 4 068521 5 PDF). Geneva: Switzerland. Yoshida, K.K., Shanouda, F., and Ellis, J., An Education and negotiation of Difference: Schooling experiences of Canadian youths who contracted polio prior to 1955. Disability and Society. Sept 3, 2013. http://dx.doi.org/10.1080/09687599.2013.823080



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APPENDIXES

Appendix 1: Bibliography

This link is to a list of articles and books about oral history compiled by The Columbia Center for Oral History: http://library.columbia.edu/indiv/ccoh/education/resources.html Other references of interest include: Borland, K. (1991). ‘That’s not what I said’: Interpretive conflict in oral narrative research. S. B. Gluck, & D. Patai. (Eds.) Women’s Words: The Feminist Practice of Oral History. New York and London: Routledge. (4-‐75). Goodley, D. (1996). Tales of hidden Lives: A critical examination of life history research with people who have learning difficulties. Disability & Society, 11 (3), 333-‐348. Hirsch, K. (1995). Culture and disability: The role of oral history. The Oral History Review. 22, (1), 1-‐27. Luken, P. & Vaughan, S. (1999). Life history and the critique of American Sociological practice. Sociological Inquiry, 69 (3), 404-‐425. Panitch, M. (2008). Disability, mothers and organization: Accidental activists. New York and London: Routledge. Tierney, W. (2000). Undaunted courage: Life history and the postmodern challenge. N. K.



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Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research. (2nd ed), (537–553). Consult the websites of these oral history centres for more information: Columbia University, Columbia Oral History Center (http://library.columbia.edu/indiv/ccoh.html). Baylor University, Institute for Oral History (http://www.baylor.edu/oralhistory/). University of California, Berkley, Regional Oral History Office (ROHO), (http://bancroft.berkeley.edu/ROHO/index.html). Concordia University, The Centre for Oral History and Digital Storytelling (COHDL), (http://storytelling.concordia.ca/oralhistory/). University of Kentucky, Louie B. Nunn Center for Oral History (http://libraries.uky.edu/nunncenter). The University of North Carolina at Chapel Hill, Center for the Study of the American South, Southern Oral History Program (http://www.sohp.org/).



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Appendix 2: Consent Forms Consent forms should:

• Outline the purpose of the project, establish the role of the interviewee, highlight time commitments, and explain to participants how their stories will be used in the project.

• Inform participants about the potential risk involved in participating, like

loss of confidentiality.

• Inform participants of their right to withdraw from the project (at any time) and remove confidential or identifying information (at a later date).

If a participant chooses to withdraw from the project, remove the interview material from the overall data collection (this is if the interview has already taken place). If possible try to speak to the participant in an effort to understand their reason for withdrawing from the interview. In most cases, participants ask to withdraw from the project because they fear they shared personal and/or embarrassing experiences that may easily identify them. This is an opportunity to let the participant know that there will be a chance for them to review the written interview and at that time, they can personally edit it to remove words, sentences or whole sections. Remind participants that their stories and experiences are valuable as they add knowledge to the history of the disability community. We recommend that participants receive an honorarium for participating – this will also require a consent form



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The following four sub-‐appendixes are examples of proper consent forms: Sub-‐appendix 1 -‐ Example of an information and overall consent form

Sub-‐appendix 2 – Example of an audiotape consent form Sub-‐appendix 3 – Example of a videotape consent form Sub-‐appendix 4 – Example of a honorarium form

Sub-‐appendix 1 -‐ Example of an information and overall consent form Information sheet and overall study consent form for project: Our histories: Building leadership and engagement in the disability community: Lessons learnt from Toronto’s disability leaders. Sandra Carpenter and Karen K. Yoshida, 2012. Investigators: ___________________________________ If you have any questions about this study, please contact________________________________ The purpose of this project is to document and analyze the histories of leadership and community engagement among Toronto’s Disability Leaders. This study is important, as there is few documented oral histories of Canadian Disability Leaders. In this project the participants will have an opportunity to tell their own stories and have them documented. This information will add to the field of disability history and will provide a sense of pride for disabled Canadians. The information from this study will also be important to disabled youths and young adults and to the issues, challenges, barriers that are still relevant today. You have been selected to participate, as you have been identified as a “leader”, and are 18 years of age and older. Participation in this study means you will be available for an interview lasting approximately one to one and a half hours, either in person at a location convenient to you or by phone. If you request, the interview can be two 45-‐minutes sessions instead of one session. You will be sent the interview guide ahead of time so that you can prepare any information you



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might require. The interview will be audiotaped and videotaped and written notes will be taken. Upon review of the interview data, there may be a follow-‐up phone call in order to clarify information. In addition, you may be selected to advise on the development of the leadership and community engagement toolkit that will be used for the workshop. This consultation will only be 1-‐2 hours in total. As this is a historical project, I will like to audiotape and videotape the interview. Audio and videotaping of your interview is important as it represents a significant piece of Disability History and others may use this information for their historical research in the future. I will be asking for your consent to do both and if not both, at least audiotaping the interview, so that the information can be properly stored in an archival setting (e.g. City of Toronto Archives). I will ask to see materials or objects that you identify as important to your story. These objects may be the basis for some of your accounts. We will be asking to take digital images of these objects to complement your life history stories. It is possible that recalling and talking about past memories may make you feel uncomfortable and/or upset. If this happens you do not have to continue talking about that particular event or situation. The research study will result in presentations, articles and toolkits based on the study content. You may choose or not choose to allow your identities and image(s) to be known. If you wish to remain anonymous potential identifiers will be omitted or masked (names, countries, organizations, face, voice etc.) and you will only be identified by a code name. Audiotapes and/or videotapes of the interviews and transcribed interview data will be stored in a locked cabinet in Dr. Yoshida’s research lab at the Department of Physical Therapy, University of Toronto, 500 University Ave for seven years post last publication, following which they will be sent to a public archives for storage of historical data. For the purpose of depositing in the public archives, a title page, preface and an index to all people mentioned in the transcript are deposited with the collection



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and one copy is sent to you for your records. Participant’s confidentiality and privacy of information will be maintained as requested. The procedure for the audiotaped Interviews is as follows. All interviews are transcribed verbatim. For archival purposes, the transcript will be sent to you for your review and correction. The addition of any additional commentary you think is necessary is encouraged so that your interview is more historically grounded. While you are free to edit anything on the transcript, corrections of facts are important. The transcription then will be returned to the investigator for changes to be incorporated into the final copy. To archive the transcribed audio and video portions of the interview, separate agreements need to be signed. The agreements allow you to open the interview to the public (transcribed audio and video components) as soon as the project is completed. Or you can choose to close all or portions of it for a specified and reasonable period of time beyond that date, or to require scholars to gain permission before consulting the interview. The only cost to participating in this study will be the time involved in completing the interview (approximately one to two hours) and advising on the leadership workshop. You will be given a $50.00 honorarium for participating in the study prior to the start of the interview. Your participation is totally voluntary and you may withdraw at any time during the study, for whatever reason with no adverse consequence to you. If you choose to withdraw, you will still be paid the honorarium and your interview data will be destroyed. If you have questions about your rights as a research participant, please contact the ethics office at ____________ You may request a summary of the final report and you will receive a copy of your signed informed consents to keep for your records. Yours truly, (Principal Investigator), (Consultant or Second Investigator)



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Consent Form to Participate in the Study I, _________________________, have read the accompanying letter of information and have had the nature of this study explained to me. I agree to participate in this study. All questions about the study have been answered to my satisfaction. I have received a copy of my signed consent for my records _____________________________ Name of interviewee _____________________________ Signature of interviewee _____________________________ Date _____________________________ Signature of interviewer _____________________________ Date



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Sub-‐appendix 2 – Example of an audiotape consent form Agreement for audiotaped interviews for project: Our histories: Building leadership and engagement in the disability community: Lessons learnt from Toronto’s disability leaders. Sandra Carpenter and Karen K. Yoshida, 2012. The interviews will be recorded and a transcript of the audio will be made as resources permit (the audio and transcript collectively called the “Work”). I hereby grant, assign, and transfer to the University and Centre for Independent Living (CILT) Inc., all rights, title and interest in and to the Work, including literary rights and copyright, provided, however, that I shall retain the non-‐exclusive right to copy, use and publish the Work in part or in full until my death. Among any other uses of the Work that the University and CILT may make, it shall make the Work available to researchers and others in accordance with applicable University rules and general policies. I understand that the University and CILT may use my image, voice and other personal characteristics in photographs or in video, audio, websites, or other media in connection with the Work. I agree that the University and CILT may use, reproduce, exhibit, distribute, broadcast, and digitize my name, likeness, image, voice, recordings and transcripts and any other contribution by me in the Work, in whole or in part. I understand that this release is binding on heirs, my executors, assigns and me. This agreement contains our entire and complete understanding I have received a copy of my signed consent for my records. I agree to open the Work to the public on the completion of the project. OR



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I agree to close the Work to the public until the following date. ____________________________________________ Please state the date or time. I agree to open all portions of the Work as indicated above. I agree to close some portions of the WORK until a specific time. ____________________________________________ State what portion of the Work is to remain closed and until what time. Scholars must gain permission to use the Work for research or other purposes after this study is closed. _____________________________ Name of interviewee _____________________________ Signature of interviewee _____________________________ Date _____________________________ Signature of interviewer _____________________________ Date



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Sub-‐appendix 3 – Example of a videotape consent form Agreement for videotaped interviews for project: Our histories: Building leadership and engagement in the disability community: Lessons learnt from Toronto’s disability leaders. Sandra Carpenter and Karen K. Yoshida, 2012. I understand that the interviews will be videotaped and a transcript of the tapes will be made as resources permit (the tapes and transcript collectively called the “Work”). I hereby grant, assign, and transfer to the University and CILT all rights, title and interest in and to the Work, including literary rights and copyright, provided, however, that I shall retain the non-‐exclusive right to copy, use and publish the Work in part or in full until my death. Among any other uses of the Work that the University and CILT may make, it shall make the Work available to researchers and others in accordance with applicable University rules and general policies. I understand that the University and CILT may use my image, voice and other personal characteristics in photographs or in videotapes, audiotapes, websites, or other media in connection with the Work. I agree that the University and CILT may use, reproduce, exhibit, distribute, broadcast, and digitize my name, likeness, image, voice, recordings and transcripts and any other contribution by me in the Work, in whole or in part. I understand that this release is binding on heirs, my executors, assigns and me. This agreement contains our entire and complete understanding. I have received a copy of my signed consent for my records. I agree to open the Work to the public on the completion of the project. OR



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I agree to close the Work to the public until the following date. ____________________________________ Please state the date or time. I agree to open all portions of the Work as indicated above. I agree to close some portions of the WORK until a specific time. ____________________________________________ State what portion of the Work is to remain closed and until what time. Scholars must gain permission to use the Work for research or other purposes after this study is closed. _____________________________ Name of interviewee _____________________________ Signature of interviewee _____________________________ Date _____________________________ Signature of interviewer _____________________________ Date



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Sub-‐appendix 4 – Example of a honorarium form Honorarium form for interviewees or workshop participants for project: Our histories: Building leadership and engagement in the disability community: Lessons learnt from Toronto’s disability leaders. Sandra Carpenter and Karen K. Yoshida, 2012. I have been selected to be interviewed or participate in the workshop for the above named study. I have been given a $50.00 honorarium for participating in the study. _____________________________ Name of interviewee _____________________________ Signature of interviewee _____________________________ Date _____________________________ Signature of interviewer _____________________________ Date



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Appendix 3: Advertisement

Advertisement for Participants in Leadership and Community Engagement Workshop Developed by: Karen K. Yoshida

Get Involved with the Community!

Learn leadership skills in an exciting and interactive workshop! There is an important project underway that is collecting the stories of Toronto’s disability leaders. This project is led by _________________and ______________________. This information will provide the basis for a Leadership and Community Engagement workshop. We need disabled young adults, between 18 -‐ 35 years of age, living in the city of Toronto, who wish to learn about leadership and community engagement in an interactive and innovative workshop session. The session will be 5 hours and will be located at the Centre for Independent Living in Toronto. If you are interesting in such an opportunity, please contact ____________________ to indicate your willingness to participate. Please indicate why you are interested and if you require any accommodations. We are seeking a diversity of young adults from the disability community in Toronto. Please note that we have space limitations for this workshop due to the venue so please inquire early regarding participation.



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Appendix 4: Initial communication with participants

Developed by: Fady Shanouda and Karen K. Yoshida Initial contact with participants through email: Yoshida Subject: An invitation to participate in a project entitled, "Our histories-‐ building leadership and engagement in the disability community: lessons learnt from Toronto's disability Leaders". Dear (participant’s name):

It is with great interest that we are emailing you today to invite you to participate in a project titled, “Our histories: Building leadership and engagement in the disability community: lessons learnt from Toronto’s disability leaders.” You have been identified as a leader in the disability community whose experience, advocacy and knowledge can shed light on the progress of disability issues from the past and guide us to the work that is needed within our communities in the future. The project is headed up by (principal investigator), and (consultant or secondary investigator). Your story of leadership and community engagement will add to the field of disability history and will provide a sense of pride for disabled Canadians. Your story will also be important to disabled young adults and to the issues, challenges, and barriers to participation that are still in existence today. If you are interested in learning more about the project, please reply to me, (interviewee) and we can set up a time to talk by phone or meet in person to discuss the project in more detail. Thank you for your time, (Interviewer)



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Appendix 5: Communication with interested participants

Developed by: Fady Shanouda and Karen K. Yoshida An appropriate response to interested participants through email: Subject: Our Histories: Oral History Project Hello (participant’s name): Thank you for your interest in the project. I look forward to meeting you and interviewing you for the project. If you'd like to hear more about the project we can set up a pre-‐interview any time that you are available – either in person or over the phone. We are most interested in your stories and experiences of activism and advocacy, but are also interested in your life history of living through periods of social change. I am certain that your experiences will make a valuable addition to the project. The time commitment is relatively small. We would need to conduct one initial interview, approximately 2-‐3 hours (but we can take longer if you would like to). There is potential for follow-‐up interviews, but those don't always have to be face to face -‐ they can be over the phone or by email. Usually we conduct follow-‐up interviews to clarify or expand on something discussed during the initial interview. For the interview we need a space that you find comfortable and which is available for the duration of the interview. The interview can be completed in more than one session. Two, one-‐hour sessions can be arranged. We suggest your home as the best location to be interviewed, but there is always the alternative of a quiet space in your office or another space that is private and that you feel safe to speak in. In addition to the interview, you may be selected to advise on the development of a leadership and community engagement toolkit that will be used for the workshop. This consultation will only be 1-‐2 hours in total.



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Please let me know if you need anything else. I can easily email you the consent form as well as a brief outline of the questions in advance of our meeting. Also, please let me know if any accommodations are needed. The project can cover the cost of transportation, sign language interpreters, translators, attendants, or other accommodations that might be need. Now all we need to do is arrange a time for us to meet. Let me know when you are free. Thank you again for agreeing to participate and I hope to hear from you soon, (Interviewer) Further contact with participants through email:

Subject: Our Histories: Information form and Questions Hello (participant’s name): Thank you again for agreeing to be interviewed. I'm excited to hear your stories and experiences! I have attached the questions. You'll find that they are not in question form. Since this an oral life history project, we do not want to limit anything that you might want to say by sticking to a list of questions. We will concentrate on your activism and advocacy, but your life surrounding your work as an activist is as important. Therefore, we call the questions in this project "topics" and what I am sending you, is really a road map that we hope will have many tandems and additions. It is a guide, but nothing more. If you have any questions or concerns please feel free to email me or call me at any time. See you soon, (Interviewer)



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Appendix 6: Road map

Here is the list of topics we sent to participants affiliated with this project: Biographical Information: date of birth, place of birth, relationship with parents, with siblings, home life, etc. Schooling: childhood, youth, university, education, working, and involvement as child or youth. Disability: disablement, impairment, access, communication, transportation, support (health, family, etc.), safety (health, crime, environmental concerns), and racial/ethnic/economic makeup. Work: what, when, where, why, how, other work: before and after. Marriage/Children: relationships, children, advocacy and relationships with spouse/partner and children. Activism: involvement, organizations, disability community, advocacy, times people got together: when, where, why (politics, sports, play, social life), leaders, characters, etc. Toronto/future: city, province, country and disability activism, future disability work, future activism, changes over time, changes needed in the future.



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Appendix 7: Interview guide

Interview guide: “Our histories: building leadership and engagement in the Disability community: lessons learnt from Toronto’s disability leaders.” Sandra Carpenter and Karen K. Yoshida, 2012. Developed by Karen K. Yoshida and Fady Shanouda The best interviews allow for the flow of information in a natural manner that is based on the interviewee’s own framework. In detailing accounts of leadership and engagement we believe that these stories are progressive in nature, building over time as the person takes on actions within the disability community. The interview guide is structured to capture this process. Please note that this is a draft guide and some questions may not be applicable to some of the interviewees. Probes will be used to ask follow-‐up questions. Basic Background. Family history (If applicable)

• Please tell me about your family, grandparents and parents, and the influences they had on you. What did they do? What were their values? Any community involvement? (Include any important events e.g. immigration etc.)

• Interviewee’s birthplace, circumstances, siblings. (If born with a disability or acquired one, please describe circumstances when appropriate).

Description of family life and social environment.

• Please describe the community/communities that you grew up in and your position within it and any community involvement.

• Please describe your life growing up (family, institution, other settings), responsibilities of members.

• Significant relationships, activities, traditions.



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• How accessible was your home and community for you? • (For the above – Explain how you were included or excluded. How did you

family facilitate your inclusion? Also were there any instances that you had to speak up for yourself and/or others?)

Childhood and the teen years Education

• Please describe your education/schooling, location, curriculum, expectations and activities engaged in.

• What were your parents’ or other significant adult’s attitude towards education? Different or the same expectations for all of the children?

• (For the above -‐ Explain how you were included or excluded. How did you family facilitate your inclusion? Also were there any instances that you had to speak up for yourself and/or others?

Friendships

• Who were your friends as a young child? Disabled? Nondisabled? What did you do for fun?

• Who were your friends as a teenager? Disabled? Nondisabled? What were the community activities you did? Types? Your role? Any situation that you took a leadership role in? What helped you to participate? Please explain.

• How diverse or not was your social group? • (For the above – Explain how you were included or excluded. How did you

family or yourself facilitate your inclusion? Also were there any instances that you had to speak up for yourself and/or others)

Family relations and home/community responsibilities (if applicable)

• Home responsibilities for family members? Differences between boys and girls? Disabled or nondisabled? Or not?

• How did your family function? Supportive? Non-‐supportive?



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• (For the above -‐ Explain how you were included or excluded. How did you family or yourself facilitate your inclusion? Also were there any instances that you had to speak up for yourself and/or others).

Early Adulthood Expectations about the future

• Did your family talk about a future for you? (such as relationships, employment etc.). Were expectations about work, marriage and family spoken to you? What other expectations were spoken to you?

Volunteer or paid work history

• Could you trace your work and/or volunteer opportunities? Please describe position, place of work and conditions.

• Please describe the importance of work associates • (For the above -‐ Include how you were included or excluded. How did you

facilitate your inclusion? Also were there any instances that you had to speak up for yourself and/or others).

Relationships and community and group involvement

• Please describe any community /group involvement? How did your involvement begin with these groups? What position do you assume in these groups

• Please describe any examples of your leadership within these groups? What helped this to happen

Adult life and activities

• Please describe a typical day for you related to work/career and/or marriage/family.

• Please describe your social activities outside the home other community activities? What was your role and reason for involvement?



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• Have you provided leadership in the disability community? What were the circumstances surrounding this leadership? What helped you to be a leader in this instance?

Disability

• How did you acquire your disability (birth, accident, mental illness, sensory or development, illness or disease)?

• What does it mean to be disabled? • How has it changed or not changed your life? • How has it changed or not changed your work?

Activism

• How did you get involved? • What organizations were you involved in? • Have things changed for the disability community? What are some of the

things that have changed? How have things changed? What hasn't changed? What needs changing? What is the same?

• What does it mean to be an activist? • Are individuals still involved? • How does one get involved now as a young person? • Are people more or less interested? • Tell me about advocacy? What does someone need to know about

advocacy? Toronto: Future disability work and activism

• Does this city specifically have any disability issues that are not present in other cities?

• Why Toronto as your home? • How is Toronto on access? • How can it improve? • What needs to be done in the future?



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General

• Reflecting on your life to now, what leadership or community involvement has been the most fulfilling to you? Why?

• Reflecting on your life to now, what leadership or community involvement has been the least satisfying to you? Why?

• What do you believe are/were the most important influences on you to become involved in activities of the disability community?

• What do you believe are/were the most important influences on you to become a leader in the disability community?

• What advice would you have for a young disabled person who is/or aspires to be a leader?

• Is there anything else that you would like to add based on what we talked about or not?

• What is the question I didn't ask?



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Appendix 8: Equipment specifications

Camera: Panasonic HC-‐X900M Microphone: RODE Videomic Tripod: Henry’s Camera tripod Headphones: Sony portable headphones SD Cards: 2 x 32GB



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Appendix 9: Post-‐interview communications

Developed by Fady Shanouda and Karen K. Yoshida Subject: Our Histories: Oral History Project Hello (participant’s name): Thank you for meeting with me yesterday and participating in the project. Your experiences and stories of activism will add to the history of Toronto’s disability community. I wanted to inform you that your transcripts will be available in about a months time, at which point I will send them over and have you review them. I also wanted to ask your permission to contact you in the mean time with questions I might have to clarify some of the topics we discussed yesterday. Thank you again for taking the time to speak with me and for sharing your stories and experiences. I will contact you in _____ month’s time. If you have any questions or concerns, please feel free to contact me at any time. Kind regards, (Interviewer).

Disability Oral History Toolkit

Documents

Transcript of Disability Oral History Toolkit