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Appendix A: Interview Guide for Monitoring the Individual Human Rights Experiences of Persons with Disabilities

NOTE: This version of the Interview Guide will be adapted to meet the cultural, social and economic differences of the country where it is used. See Appendix B for possible adaptations.

A. Beginning the Interview

Introductions:

  • Introduce everyone present (e.g. monitors, aide(s) and anyone else attending the interview)
  • Explain the equipment you have with you.

Request Written, Free and Informed Consent to Participate in Interview:

  • Review the Information Sheet with the interviewee.
  • Ask the interviewee if she/he will consent to participate by signing the Free and Informed Consent Form.
  • If the interviewee does not want to sign the consent to participate line on the Free and Informed Consent Form, thank him/her for his/her time and end the interview. Do not proceed any further.
  • If the interviewee signs the consent to participate line on the Free and Informed Consent Form, proceed with the next step

Request Written Permission to Audio Record the Interview:

  • Ask the interviewee if she/he will consent to having her/his interview audio recorded by signing the Free and Informed Consent Form.
  • If the interviewee does not want to sign the consent to record line, thank him/her for her/his time and end the interview. Do not proceed any further.
  • If the interviewee signs the consent to record line on the Free and Informed Consent Form, proceed to the next step.

Write information on the Identification Sheet:

  • Write the interviewee’s name on the Identification Sheet.

Monitor: Begin Audio Recording Now. Say into the audio recorder, This is the beginning of Interview [insert Interview Code here]

B. Experiences faced by the Interviewee

  1. Please tell me a little about your life during the past five (5) years. What things do you do? Where do you go? Who do you meet?
  2. What are the things in your life that are most satisfying?
  3. What are the most difficult barriers or challenges that you face in your life?

1st Experience

  • 1.1 Do you recall a particular time or event in the last five (5) years when you were left out or treated badly or prevented from participating because of your disability?
  • 1.2 What happened? Where and how did it happen?
  • 1.3 Is this still happening or did it just happen once?
  • 1.4 Are there other details that you want to share with us about this experience?

Dignity

  • 1.5 How did this experience make you feel and why? (For example, did you feel respected/not respected, ignored/cared for, worthy/ unworthy?)
  • 1.6 What made you feel that way?
  • 1.7 What do you think made people treat you that way?

Autonomy

  • 1.8 Did you feel that you had a choice about what happened to you? Why? or Why not?
  • 1.9 If you had a choice, would it have made a difference to what happened? In what way?

For experiences where there are clear issues related to choice and making a decision yourself (autonomy) ask:

  1. Did you want to make a different decision or did you want to do something else? What was the different decision or what did you want to do?
  2. Did you have enough information to make that decision? If not, what prevented you from having enough information?
  3. Did you feel pressured to act the way you did? Who / what was pressuring you? How did it make you feel?

Participation, Inclusion & Accessibility

  • 1.10 Did people in your community who knew or saw what happened to you do anything about it?

    • If yes, who?
    • Monitor: interviewee does not need to give someone’s name here – can give general description of the person e.g. ‘neighbour’, ‘sister’, etc.
    • What did they do?

For experiences where there are clear issues related to participation, inclusion or accessibility ask:

  1. Were you kept apart or left out?
  2. Did you need a service or some assistance so that you could participate?

    • If yes, what service(s) or assistance did you need?
    • Did you receive it?
    • If you did not receive it, how did that affect you?

Non-Discrimination & Equality

  • 1.11 How do you think your disability affected what happened to you?
  • 1.12 Do you think that persons without disabilities would be treated the same way you were? Why or Why not? How would they have been treated?

For experiences where there are clear issues of discrimination or inequality ask:

  1. Do you know anyone else who was treated in the way you were?

Respect for Difference

  • 1.13 Were you treated the way you were because people thought you were different?

    • In what ways do people see you differently?
  • 1.14 Do you think that a person without a disability would have been treated in a similar way?

    • If not, how do you think he/she would be treated?
  • 1.15 Do you feel that people label you and then treat you differently because of the label? If yes, what label do they use? How does this label affect you?

For experiences where there are clear issues related to respect for difference ask:

  1. Would someone of a different ethnicity be treated that way?

    • Why? or why not?
    • How are people from a different ethnicity treated in your community?
  2. Would a woman be treated that way?

    • Why? or why not?
    • How are women in your community usually treated?
  3. Would a poor person be treated that way?

    • Why? or why not?
    • How are poor people treated in your community?
  • 1.16 Did you report the experience to anyone? Yes or No?

    • If you reported the experience, what kind of person / organization did you report it to?
    • Note: Elements of the following list may be changed to suit particular local circumstances. See more information in Appendix B.

      • government official
      • police officer
      • army officer
      • NGO employee
      • religious leader
      • cultural leader
      • ombudsperson
      • human rights commission
      • disability organization (DPO)
      • other (explain)
      • How did that person react?
      • What action was taken?
      • If you did not report the experience to anyone why did you not report it?
  • 1.17 In your opinion, what action[s] should be taken to improve [or prevent] the experience in the future?
  • 1.18 Is there anything else that you would like to tell us about that experience?

2nd Experience

  • 2.1 Do you recall another particular time or event in the last five (5) years when you were left out or treated badly or prevented from participating because of your disability?
  • 2.2 What happened? Where and how did it happen?
  • 2.3 Is this still happening or did it just happen once?
  • 2.4 Are there other details that you want to share with us about this experience?

Dignity

  • 2.5 How did this experience make you feel and why? (For example, did you feel respected/not respected, ignored/cared for, worthy/unworthy?)
  • 2.6 What made you feel that way?
  • 2.7 What do you think made people treat you that way?

Autonomy

  • 2.8 Did you feel that you had a choice about what happened to you?

    • Why? or why not?
  • 2.9 If you had a choice, would it have made a difference to what happened?

For experiences where there are clear issues related to choice and making a decision yourself (autonomy) ask:

  1. Did you want to make a different decision or did you want to do something else? What was the different decision or did you want to do?
  2. Did you have enough information to make that decision? If not, what prevented you from having enough information?
  3. Did you feel pressured to act the way you did? Who / what was pressuring you? How did it make you feel?

Participation, Inclusion and Accessibility

  • 2.10 Did people in your community who knew or saw what happened to you do anything about it?

    • If yes, who?
    • Monitor: interviewee does not need to give someone’s name here - can give general description of the person e.g. ‘neighbour’,‘sister’,etc.]
    • What did they do?

For experiences where there are clear issues related to participation, inclusion or accessibility ask:

  1. Were you kept apart or left out?
  2. Did you need a service or some assistance so that you could participate?

    • If yes, what service(s) or assistance did you need?
    • Did you receive it?
    • If you did not receive it, how did that affect you?

Non-Discrimination & Equality

  • 2.11 How do you think your disability affected what happened to you?
  • 2.12 Do you think that persons without disabilities would be treated the same way you were?

    • Why or why not?
    • How would they have been treated?

For experiences where there are clear issues of discrimination or inequality ask:

  1. Do you know anyone else who was treated in the way you were?

Respect for Difference

  • 2.13 Were you treated the way you were because people thought you were different?

    • If not, how do you think he/she would be treated?
  • 2.14 Do you think that a person without a disability would have been treated in a similar way?

    • If not, how do you think he/she would be treated?
  • 2.15 Do you feel that people label you and then treat you differently because of the label?

    • If yes, what label do they use? How does this label affect you?

For experiences where there are clear issues related to respect for difference ask:

  1. Would someone of a different ethnicity be treated that way?

    • Why? or why not?
    • How are people from a different ethnicity treated in your community?
  2. Would a woman be treated that way?

    • Why? or why not?
    • How are women in your community usually treated?
  3. Would a poor person be treated that way?

    • Why? or why not?
    • How are poor people treated in your community?
  • 2.16 Did you report the experience to anyone? Yes or no?

    • If you reported the experience, what kind of person / organization did you report it to?
    • Note: Elements of the following list may be changed to suit particular local circumstances. See more information in Appendix B.

      • government official
      • police officer
      • army officer
      • NGO employee
      • religious leader
      • cultural leader
      • ombudsperson
      • human rights commission
      • disability organization (DPO)
      • other (explain)
      • How did that person react?
      • What action was taken?
      • If you did not report the experience to anyone why did you not report it?
  • 2.17 In your opinion, what action(s) should be taken to improve (or prevent) the experience in the future?
  • 2.18 Is there anything else that you would like to tell us about that experience?

3rd Experience

  • 3.1 Do you recall another particular time or event in the last five (5) years when you were left out or treated badly or prevented from participating because of your disability?
  • 3.2 What happened? Where and how did it happen?
  • 3.3 Is this still happening or did it just happen once?
  • 3.4 Are there other details that you want to share with us about this experience?

Dignity

  • 3.5 How did this experience make you feel and why? (For example, did you feel respected/not respected, ignored/cared for, worthy/unworthy?)
  • 3.6 What made you feel that way?
  • 3.7 What do you think made people treat you that way?

Autonomy

  • 3.8 Did you feel that you had a choice about what happened to you?

    • Why? or why not?
  • 3.9 If you had a choice, would it have made a difference to what happened?

For experiences where there are clear issues related to choice and making a decision yourself (autonomy) ask:

  1. Did you want to make a different decision or did you want to do something else? What was the different decision or did you want to do?
  2. Did you have enough information to make that decision? If not, what prevented you from having enough information?
  3. Did you feel pressured to act the way you did? Who / what was pressuring you? How did it make you feel?

Participation, Inclusion and Accessibility

  • 3.10 Did people in your community who knew or saw what happened to you do anything about it?

    • If yes, who?
    • Monitor: interviewee does not need to give someone’s name here - can give general description of the person e.g. ‘neighbour’,‘sister’,etc.
    • What did they do?

For experiences where there are clear issues related to participation, inclusion or accessibility ask:

  1. Were you kept apart or left out?
  2. Did you need a service or some assistance so that you could participate?

    • If yes, what service(s) or assistance did you need?
    • Did you receive it?
    • If you did not receive it, how did that affect you?

Non-Discrimination & Equality

  • 3.11 How do you think your disability affected what happened to you?
  • 3.12 Do you think that persons without disabilities would be treated the same way you were?

    • Why or why not?
    • How would they have been treated?

For experiences where there are clear issues of discrimination or inequality ask:

  1. Do you know anyone else who was treated in the way you were?

Respect for Difference

  • 3.13 Were you treated the way you were because people thought you were different?

    • If not, how do you think he/she would be treated?
  • 3.14 Do you think that a person without a disability would have been treated in a similar way?

    • If not, how do you think he/she would be treated?
  • 3.15 Do you feel that people label you and then treat you differently because of the label?

    • If yes, what label do they use? How does this label affect you?

For experiences where there are clear issues related to respect for difference ask:

  1. Would someone of a different ethnicity be treated that way?

    • Why? or why not?
    • How are people from a different ethnicity treated in your community?
  2. Would a woman be treated that way?

    • Why? or why not?
    • How are women in your community usually treated?
  3. Would a poor person be treated that way?

    • Why? or why not?
    • How are poor people treated in your community?
  • 3.16 Did you report the experience to anyone? Yes or no?

    • If you reported the experience, what kind of person / organization did you report it to?
    • Note: Elements of the following list may be changed to suit particular local circumstances. See more information in Appendix B.

      • government official
      • police officer
      • army officer
      • NGO employee
      • religious leader
      • cultural leader
      • ombudsperson
      • human rights commission
      • disability organization (DPO)
      • other (explain)
      • How did that person react?
      • What action was taken?
      • If you did not report the experience to anyone why did you not report it?
  • 3.17 In your opinion, what action(s) should be taken to improve (or prevent) the experience in the future?
  • 3.18 Is there anything else that you would like to tell us about that experience?

Monitor: Turn audio recorder off now.

C. Follow-up & Verification Information

Is there anyone we could contact who saw what happened to you or who could provide us with more information about the experiences you talked about?

For 1st Experience

  • What is their name? [write name on Identification Sheet]
  • Can we contact this person? Yes or no?
  • If yes, what is the best way for us to contact him or her? [write details on Identification Sheet]

For 2nd Experience

  • What is their name? [write name on Identification Sheet]
  • Can we contact this person? Yes or no?
  • If yes, what is the best way for us to contact him or her? [write details on Identification Sheet]

For 3rd Experience

  • What is their name? [write name on Identification Sheet]
  • Can we contact this person? Yes or no?
  • If yes, what is the best way for us to contact him or her? [write details on Identification Sheet]

Monitor: Turn audio recorder back on now.

D. Background Information

Now, if you don’t mind, we would like to ask you a few questions about yourself.

  • 4.1 What is your sex?
  • 4.2 In what year were you born?
  • 4.3 How would you describe your disability? [choose as many as apply]

    • mobility
    • sensory – if so:

      • blind
      • low vision
      • deaf
      • hard of hearing
    • intellectual
    • psycho-social
    • other (ask interviewee to describe)
  • 4.4 How long have you had your disability?

    • since birth
    • since (ask interviewee to state the year)
  • 4.5 Did you go to school? Yes or no?

    • If yes, what kind of school? [interviewee should identify as many as apply]
    • Note: Elements of the following list may be changed to suit particular local circumstances. See more information in Appendix B.

      • primary school
      • secondary school
      • trade school
      • college
      • university
  • 4.6 Is there a specific place where you live? Yes or no?

    • If yes, do you
    • Note: Elements of the following list may be changed to suit particular local circumstances. See more information in Appendix B.

      • own that place?
      • lease that place?
      • rent that place?
      • live with someone who owns, leases or rents the place?
    • Is the place in a permanent building? Yes or no?

      • If no, explain.
      • If yes, what is the building made of?
      • Note: Elements of the following list may be changed to suit particular local circumstances. See more information in Appendix B.

        • concrete
        • wood
        • other: (explain)
  • 4.7 How far do you live from the City Centre?
  • 4.8 Who lives with you?[interviewee should identify as many as apply]

    • no one
    • spouse
    • children [how many?]
    • parent(s) [how many?]
    • other family member(s) [how many?]
    • friend(s) [how many?]
    • other (explain) [how many?]
  • 4.9 How far is the closest police station to where you live?

Note: Elements of the following lists (4.10-4.15 may be changed to suit particular local circumstances. See more information in Appendix B.

  • 4.10 What do people use to cook with in your neighbourhood? [indicate as many as apply]

    • electricity
    • wood
    • paraffin
    • charcoal
    • gas
    • dust oven
    • other (specify)
  • 4.11 How do you get the water that you use?

    • in the house
    • central source nearby
    • borehole
    • collected from lake, river, stream or well
    • other (ask interviewee to specify)
  • 4.12 Do you have toilets in your house?

    • yes
    • no, but centralized and accessible
    • no, pit latrines
    • other (specify)
  • 4.13 What kind of sewage system do you use for your home?

    • open sewage system
    • closed sewage system
    • no sewage system
  • 4.14 How far is the nearest health centre from your house?
  • 4.15 What type of care is offered by the health centre?

    • homeopathic
    • traditional tribal medicine
    • western medicine
    • natural medicine
    • other (specify)
  • 4.16 Do you have a job? Yes or no?

    • If yes, what is your job?

      • Do you get paid? Yes or no?
  • 4.17 Do you belong to an organization of persons with disabilities? Yes or no?
  • 4.18 Would you say that the area where you live is accessible for persons with disabilities? Yes or no?
  • 4.19 What makes the area where you live accessible or not accessible?

E. Ending the Interview

  • Do you have anything else that you would like to add?
  • Do you have any final questions for us about the study?

Monitor: Answer these questions.

Monitor: Review briefly what will happen with the information the interviewee has provided, the purpose of the project and the relevant time frames.

Monitor: Say into the audio recorder: This is the end of Interview [insert Interview Code here]. Stop audio recording the interview now.

Identifying Another Person to Interview

  • Do you know someone with a disability who lives in your community who we could interview for this study?
  • What is his or her name?
  • What type of disability does he or she have?
  • Is he or she a man or a woman?
  • How old is he or she?
  • How can we contact him or her?

Monitor: Write this information on the Identification Sheet.

Monitor:Thank the interviewee very much for his/her time. Remember to leave the Information Sheet with the interviewee for his/her information.

F. Completing Notes & Transferring Data

Checklist:

  • Cassette Audio Recorder: Remove the used cassette tape from the recorder and write the correct Interview Code (from Identification Sheet) on the cassette.
  • Digital Audio Recorder: Secure the recording by turning off recorder immediately after the interview and downloading the interview file to a secure computer as soon as possible. Label the file with the correct Interview Code (from Identification Sheet)
  • As soon as possible after the interview, monitoring pairs should listen to the audio recording of the interview. If part of an audio recording is not clear, monitors should explain what is missing (if you remember) in the Interview Notes.
  • The Interview Notes should also contain the following observations:

    • Provide your overall impression of the interview (e.g. interviewee seemed nervous or anxious over certain questions, the atmosphere was comfortable, etc.).
    • Provide details about the location of the interview (e.g. held indoors/outdoors, type of building, type of room, who else was around, etc.).
    • Provide information about who was present at the interview (number of monitors, interpreters …)
    • Provide details about any challenges faced or interruptions that occurred during the interview (e.g. airplane flew overhead making it difficult to hear, lost electrical power so could not see, etc.), at what stage in the interview they occurred and what steps were taken to address them.
    • If you have any concerns about the truthfulness and/or accuracy of statements by the interviewee, identify the statements and explain why you feel this way (e.g. answers were very inconsistent, answers seemed rehearsed, etc.)
  • Be certain that one of the monitors has signed and dated the Free and Informed Consent Form.
  • Provide the Project Coordinator or Site Coordinator with the following documents:

    • audio recording of interview - labeled with the correct Interview Code
    • completed Interview Notes
    • completed Identification Sheet
    • signed Free and Informed Consent Form

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