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Annex I - Interview Guide for the study called Monitoring the Human Rights of People with Disabilities in Canada

A. Beginning the Interview

Introductions:

  • [Introduce everyone present (monitors, field assistant, aide and anyone else attending the interview)]
  • [Record the interviewee's name on the Coding Sheet.]

Request Written, Free and Informed Consent:

  • [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 signs the participation line on the Free and Informed Consent Form, proceed with interview.]
  • [If the interviewee refuses to sign the participation line on the Free and Informed Consent Form, thank the interviewee for his/her time and END the interview. Do not proceed any further.]

Request Written Permission to Record the Interview:

  • [Ask the interviewee if she/he will consent to having his/her interview recorded.]
  • [If consent to record is given, the interviewee must sign the applicable line on the Free and Informed Consent Form.]
  • [If consent to record the interview is not given, the interview can still proceed with someone taking notes.]
Note
If written consent to record given - begin recording now

B. Situations faced by the Interviewee:

  1. Please tell me a little about your life during the past five 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 Situation]

1.1 Do you recall a particular time or event in the last five 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 what happened, when and how in this situation?

[ Dignity ]

1.5 How did this situation 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 Why do you think people treated 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?

For situations where there are clear issues related to choice and making a decision yourself (Self-Determination) 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, why 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?

[ Inclusion ]

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 situations where there are clear issues related to Inclusion ask:
  1. Were you kept apart or left out in this situation?
  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 people without disabilities would be treated the same way you were?

Why or why not?

How would they have been treated?

For situations where there are clear issues of Discrimination and 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?

If yes, why?

1.14 Do you think that a person without a disability would have been treated in a similar way in this situation?

Why? or why not?

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 situations 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?
  2. Would a woman be treated that way?
    Why? or why not?
  3. Would a poor person be treated that way?
    why? or why not?

1.16 Did you report the situation to anyone? Yes or no?

  • If you reported the situation, what kind of person/organization did you report it to?

    • government official
    • police officer
    • army officer
    • NGO employee
    • religious leader
    • cultural leader
    • ombudsperson
    • other (specify)
  • how did that person react?
  • what action was taken?
  • If you did not report the situation to anyone:
    Why did you not report it?

1.17 In your opinion, what action[s] should be taken to improve [or prevent] the situation in the future?

1.18 Is there anything else that you would like to tell us about that situation?

Monitor:
Here you will move on to the 2nd situation...

2.1 Do you recall another particular time or event in the last five 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 what happened, when and how in this situation?

[ Dignity ]

2.5 How did this situation 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 Why do you think people treated 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 situations where there are clear issues related to choice and making a decision yourself (Self-Determination) 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, why 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?

[ Inclusion ]

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 situations where there are clear issues related to Inclusion ask:
  1. Were you kept apart or left out in this situation?
  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 people without disabilities would be treated the same way you were?

Why or why not?

How would they have been treated?

For situations where there are clear issues of Discrimination and 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 yes, why?

2.14 Do you think that a person without a disability would have been treated in a similar way in this situation?

Why? or why not?

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 situations 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?
  2. Would a woman be treated that way?
    Why? or why not?
  3. Would a poor person be treated that way?
    Why? or why not?

2.16 Did you report the situation to anyone? Yes or no?

  • If you reported the situation, what kind of person/organization did you report it to?

    • government official
    • police officer
    • army officer
    • NGO employee
    • religious leader
    • cultural leader
    • ombudsperson
    • other (specify)
  • how did that person react?
  • what action was taken?
  • If you did not report the situation to anyone:
    Why did you not report it?

2.17 In your opinion, what action[s] should be taken to improve [or prevent] the situation in the future?

2.18 Is there anything else that you would like to tell us about that situation?

Monitor:
Here you will move on to the 3rd situation...

3.1 Do you recall another particular time or event in the last five 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 what happened, when and how in this situation?

[ Dignity ]

3.5 How did this situation 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 Why do you think people treated 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 situations where there are clear issues related to choice and making a decision (Self-Determination) 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, why 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?

[ Inclusion ]

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 situations where there are clear issues related to Inclusion ask:
  1. Were you kept apart or left out in this situation?
  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 people without disabilities would be treated the same way you were?

Why or why not?

How would they have been treated?

For situations where there are clear issues of Discrimination and 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 yes, why?

3.14 Do you think that a person without a disability would have been treated in a similar way in this situation?

Why? or why not?

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 situations 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?
  2. Would a woman be treated that way?
    Why? or why not?
  3. Would a poor person be treated that way?
    why? or why not?

3.16 Did you report the situation to anyone? Yes or no?

  • If you reported the situation, what kind of person/organization did you report it to?

    • government official
    • police officer
    • army officer
    • NGO employee
    • religious leader
    • cultural leader
    • ombudsperson
    • other (specify)
  • how did that person react?
  • what action was taken?
  • If you did not report the situation to anyone:
    Why did you not report it?

3.17 In your opinion, what action[s] should be taken to improve [or prevent] the situation in the future?

3.18 Is there anything else that you would like to tell us about that situation?

Note
Turn tape 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 situations you have raised?

For 1st situation:

  • What is their name? [record name on Coding Sheet]
  • Can we contact this person? Yes or no?

    • If yes, what is the best way for us to contact him or her?
  • [record details on Coding Sheet]

For 2nd situation:

  • What is their name? [record name on Coding Sheet]
  • Can we contact this person? Yes or no?

    • If yes, what is the best way for us to contact him or her?
  • [record details on Coding Sheet]

For 3rd situation:

  • What is their name? [record name on Coding Sheet]
  • Can we contact this person? Yes or no?

    • If yes, what is the best way for us to contact him or her?
  • [record details on Coding Sheet]
Note
Turn tape 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
  • psychiatric
  • other (ask interviewee to specify)

4.4 How long have you had your disability?

  • since birth
  • since (ask interviewee to specify the year)

4.5 Did you go to school? Yes or no?

  • If yes, what kind of school? [choose as many as apply]

    • primary
    • secondary
    • trade school
    • college or university

4.6 Is there a specific place where you live? Yes or no?

  • If yes, do you

    • own that place?
    • lease that place?
    • rent that place?
  • Is the place in a permanent building? Yes or no (please explain)?

    • If yes, what is the building made of?

4.7 How far do you live from the City Centre?

4.8 Who lives with you?

Monitor:
interviewee should identify as many as apply
  • no one
  • spouse
  • children [if yes, how many children ?]
  • parent(s) [if yes, how many parents ?]
  • other family member(s) [if yes, how many other family members?]
  • friend(s) [if yes, how many friends ?]
  • other (specify) [if yes, how many?]

4.9 How far is the closest police station to where you live?

4.10 How far is the nearest health centre from your house?

4.11 What type of care is offered by the health centre?

  • homeopathic
  • primary care physicians
  • western medicine
  • natural medicine
  • other (ask interviewee to specify)

4.12 Do you have a job? Yes or no?

  • If yes, what is your job (specify)?
  • Do you get paid? Yes or no?

4.13 Would you say that the area where you live is accessible for people with disabilities? Yes or no?

4.14 What makes the area where you live accessible or not accessible?

E. Ending the Interview & Identifying Other People to Interview

  • Do you have anything else that you would like to add?
  • Do you have any final questions for us?
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 timeframes.
Note
Stop recording the interview now
  • 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?
    How can we contact him or her?

    • Record this information on the Coding Sheet.
Monitor
Thank the interviewee very much for his/her time.

F. Completing Notes & Transferring Data

Monitor instructions:

  • Remove the used cassette tape from the recorder and write the applicable Interview Code (from Coding Sheet) on the cassette.
  • As soon as possible afterward, monitoring pairs should listen to the tape recording of the interview. If part of a recording is not clear, monitors should clarify these areas on the Interview Notes.
  • The Interview Notes should also contain the following observations:

    1. details about the location of the interview (e.g. held indoors/outdoors, type of building, type of room, who else was around, etc.)
    2. details about any challenges faced or interruptions that occurred during the interview (i.e. airplane flew overhead making it difficult to hear responses, lost electrical power so could not see, etc.), at what stage in the interview they occurred and what steps were taken to address them;
    3. any concerns about the truthfulness of the statements made in the interview – outlining the reasons for these concerns (e.g. answers were very inconsistent, answers seemed rehearsed, etc.)
  • Provide the Project Coordinator with the following documents:

    • cassette recording of the interview labelled with the Interview Code
    • completed Interview Notes
    • completed Coding Sheet
    • signed Free and Informed Consent Form - remember to leave
      the first three pages - the Information Sheet - with the interviewee for
      his/her reference.

End

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