Reveal the voice of people with intellectual disabilities through a camera

testBy Tessa Overmars-Marx / Reading Time: 5 Minutes

‘It is important that people see us as normal people and recognize us. We are part of the community as well!’

This quote symbolizes the importance of recognizing people with intellectual disabilities as part of our community. Being part of the community means being able to tell your story in everyday life but also in research. So we – as researchers – need to seek for ways to incorporate the voices of people with intellectual disabilities in our studies. Involving people with intellectual disabilities, however, brings many challenges. In my quest to overcome these challenges and to provide people with intellectual disabilities a platform to tell their story, I think I have found a promising method. So, read on….

tessaHow to involve people with intellectual disabilities

People with intellectual disabilities often have difficulties on a communicative, cognitive and conceptual level. As a researcher, this meant I had to look beyond usual interview and focus group methods to productively involve people with intellectual disabilities in my study. By exploring the literature and sharing thoughts with colleagues, I came up with the idea of using photography to enable their involvement. People with intellectual disabilities are often better able to express themselves if they are supported by visual content. After reading other promising experiences with the use of the photovoice method, I became enthusiastic and decided to test it out.


The photovoice methodphotovoice

What exactly does the method involve? It enables people to tell their stories through photographs they have taken themselves. In my study, I wanted to obtain more knowledge about the perspective of people with intellectual disabilities concerning their neighbourhood. So, I asked participants to photograph people and places in their neighbourhood which are important to them. I walked together with the participants through their neighbourhood. I had no active role, but instead I was ‘guided’ by them. In some cases participants found it difficult to take the photos themselves because they had difficulties in handling the camera, so I took the photo for them. However, the participants always determined the topic of their photos themselves. After taking the photos, we planned interviews to discuss them.

The advantages

Photovoice enabled my participants to share their stories about how they feel in their neighbourhood by talking about their (self-taken) pictures. Using photography as an activity made participants feel involved in my research. They were able to naturally tell their personal story without having to refer to the cognitive skills they lack. During the interviews I asked open questions only, for example: what/who is on the picture?; why did you take the picture? And, if necessary, I asked for explanatory examples, like ‘could you tell me when you visited this place or could you give me an example of a joint activity you have carried out with your neighbour?’. By using this technique, I didn’t need any abstract concepts. These advantages provide people with intellectual disabilities an opportunity to explain their neighbourhood experiences and they were able to tell more about the daily contact they exchange with neighbours. This, in turn, was valuable in my research because it provides me with the possibility to distinguish important neighbourhood characteristics from the perspective of people with intellectual disabilities. This information is useful to advise care organisations in their way of working with people with intellectual disabilities who live in regular neighbourhoods.

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An example of pictures taken by the participants

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My experiences

Walking with the participants through their neighbourhoods meant gaining an insight into their lives. This was really great! The participants provided so much more information that, in my opinion, I would never have been able to elicit by means of conventional face-to-face interviews. The combination of walking together and discussing the photographs worked really well. In my research I want to find out how do people with intellectual disabilities feel in the neighbourhood and what neighbourhood characteristics contribute to this ‘neighbourhood-feeling’?’. To answer this questions their own personal and direct perspective is crucial! Perhaps equally important, caregivers and participants suffering from cold feet overcame their initial skepticism or fright and became enthusiastic! Moreover, since I started the ‘guided photovoice’ I am in a really good shape: I walked for hours with the participants and sometimes I almost had to run to keep up with them.

Would you like to know more about photovoice or do you have any other alternative strategies in interviewing people with intellectual disabilities or other groups, please contact me!

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Tessa Overmars-Marx works as a PhD candidate  in the Sociology department. Her PhD Research focuses on the relationship between the inclusion of people with intellectual disabilities and neighborhood characteristics.  The research project is conducted in partnership with four care organizations working with people with intellectual disabilities.

 

 

 

 

 

 

 

 

Fieldwork: These tips are no tricks – Part 2

Efe Kerem SozeriBy Efe Kerem Sözeri / Reading Time: 7 Minutes

Fieldwork is sort of a dating site between the data and you. Tricking your dance partner will certainly make you fall, but knowing a few moves in advance can work well.

Previously, I wrote something about how to lose your way in the fieldwork and keep it cool; and on how your research can actually gain from such uncertainty. Despite how counter-intuitive it sounds, It takes experience to be lost, and a novice spirit to keep it cool.

Since the scientific progress is cumulative, I  offer below some fieldwork tips based on my humble experience (nanos gigantum humeris insidentes); and since it is collective, please share yours in the comments section.

  • Plan in advance, but keep your options open.

The previous post, “Field is the answer, what is the question?” is the first tip. As I said, Sometimes you find data, and sometimes data finds you. Fieldwork is sort of a dating site between the two of you. (See, you were planning to read one post, but there happens to be one more. Keep this tab open, and please come back after a brief detour.)

  • Do not work on the field, live in the field.

Before the fieldwork, we often have to choose types of informants who are expected to give the most detailed information –the key informants. We often plan the hours we work with them, schedule interviews. We organize our time and space in the field according to the expectations we had on the desk.

You shall realize, however, that unplanned encounters can be equally valuable. The doorman can know more about the networks of people in a town than the mayor. The waiter in the local restaurant can tell you more about the habits of people than the officers of the cultural planning branch. And an unemployed young man can define neoliberalism better than the books on your desk.

Having your recorder always on and your field notebook always open will not work; it can distance the daily encounters you may have. But if you keep communicating with random people in your off-work time, you may obtain new insights that you could never have planned.

  • Have your permits, but do not rely solely on them.

For a country where the state authorization is the sole source of legitimacy, be sure to have your permits with you at all times in the field. A piece of paper with a local governor’s stamp may mean nothing to you, but in a remote village when a suspicious person asks about it, that paper can win you the village.

Having said that, an official permit to research is not the best way to earn trust; the surest way to access people is to have someone from the community to introduce you.

In the Tugelaweg project, where I studied the low income families’ struggle in the housing market, knocking doors with the renovation company’s contact person turned out to be very wrong: neighbors who saw me with the company employee thought that I worked for the company, and this initially prevented my access to the people who were opposing to the project. Only after I managed to gain trust of an opposing group leader, I had an access to the rest of my sample.

In the Turkish fieldwork, where I took part in an origin-of-migration study, I noticed that the local community leaders are much more trusted than the province governors. Sweet talking with village heads opened more doors than official authorisation stamps would have. And, if I manage to convince the local Imam to announce the study in the village (from the loudspeakers of the mosque where the call for prayer -the azan- is made) then the open doors would certainly be  welcoming.

  • Mark their words: Your informants know about your results even before you think

While the results of complex logistic regression models are what counts in our papers, I actually developed the core ideas of my dissertation during my stay in a central Anatolia town for a month. It may sound surprising that the SPSS and Stata on my desk often came to the same conclusions with locals who told me about their town and its people. My analysis with thousands of respondents involved computer power, while their power in knowledge was accumulated by thousands of daily encounters.

Certainly, there are questions that a local key informant cannot answer, such as independent events that confound complex outcomes; but there are also questions that a quad-core computer cannot answer either, such as the sense-making processes of human beings with altering perceptions.

So, listen with both ears, and mark their words.

  • Enjoy the moment.

This will sound silly when you are rushing through deadlines, learning state-of-the-art statistical methods, pushing top journals and building the best CV, but…

Work to live.

Your CV may have your name on it, together with some of the good things you did, but your CV is not your whole story.

If you are best at being completely focused on collecting data in the field, and doing the best analysis possible back at your desk, you could soon be replaced with an artificial intelligence doing the best data mining possible from a remote server in China. And it will probably do it  better and cheaper than you.

But if you are not afraid to err, then do something irresistibly random, and end up reaching an unexpected conclusion; congratulations, you are human.
Carpe diem
.

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Efe Kerem Sözeri is a Phd Candidate in the Sociology Department. His research project “Political baggage and Ideological Remittance” explores how the migration experience influences (or fails to influence) the political preferences and attitudes of Turkish labour migrants and their descendants, both in Western Europe and in Turkey. More info on his personal page

A matter of social attitudes?

Snoby Tamira Sno / Reading Time: 9 minutes

 

issp

From May 23 until 28 2014, I attended the annual meeting of the International Social Survey Programme (ISSP) in Tampere, Finland. The ISSP is one of the major international social sciences projects around the world and measures attitudes on a socially relevant theme. ISSP data are an important source for international comparative social scientific research. The survey has a different theme every year. This year’s theme is Citizenship. A total of 70 participants from 39 countries around the world, ranging from Australia to Canada and from Suriname to Russia, attended the meeting.

Since last year Suriname has become an associate member – ISSP-SR is incorporated in my PhD research. One of the conditions of the ISSP is conducting the survey every year, with a response of at least 1000 respondents. For Suriname I am in charge of the data collection and meeting the requirements of the ISSP.

The agenda

ISSP members meet annually. At these meetings decisions are made in a strictly democratic way (ISSP has no governing body or principal investigator). Amongst other topics, a main issue was to decide on the content of the questionnaires for the upcoming 3 years. During the conference I took part in the discussions on the content and wording of questions for the upcoming 2015 module “Work Orientation IV” and the 2016 module “Role of Government V”, as prepared by the Drafting Group. It was interesting to find out how questions could have political consequences in some countries, which questions were not relevant for all countries and how members would interpret questions. For example: in Suriname the question on left and right wings parties would not be relevant because our political system is not structured that way.  After 2 days of discussions, where members gave their comments, the questionnaire for 2015 and the list of topics for 2016 were brought to a vote and were accepted after some adjustments. With this, the members can now conduct the survey for 2015.

Also, a proposal for a theme for 2017, made by several countries, was presented and accepted by vote. The theme for 2017 will now be “Social Relations and Social networks”. This is a new theme within the ISSP.

Research session

Traditionally, the Sunday before the start of the meeting, a research session is organized, in which participants are given the opportunity to present papers that are (preferably) related to the themes of the ISSP modules. Together with my supervisor Harry Ganzeboom I prepared a presentation on “Post Stratification and Efficiency Weights in the 2012 ISSP of Suriname”. The paper describes the construction and use of post-stratification and efficiency weights in my survey on Social Mobility in Suriname that included the ISSP Social Inequality IV module.

Post stratification weights are used to correct biases, caused by selective non response. In my survey we found for example an overrepresentation of women so it seems relevant to think about using weights or not. Efficiency weights adjust for the fact that the sampling design deviates from the commonly assumed Simple Random Sampling design, but is clustered in multiple stages. In my sample, first there was a systematic sample with a random beginning, where some 60 primary sampling points were drawn; in each sampling point a cluster of 80 respondents were then selected.

The most important results and conclusions of this presentation were:

  • We found the Surinamese survey to be fairly representative with respect to district, ethnicity, age, education and occupation, but with a strong overrepresentation of women (65%), instead of an expected 50-50% distribution of men and women. This has arisen mostly from substitution within If the targeted respondent was a man and was not found at home, some interviewers immediately substituted him with a woman who appeared to be at home, despite of the instruction that substitution was not permitted in this case. The use of post-stratification weights to repair this, turned out to be of little value, because gender has a minor influence on social attitudes and usually is a control variable in the analysis.
  • Efficiency losses were found to be very strong because of the large cluster size in the sample and are reinforced because in certain areas interviewer portions were very large. These interviewers had an impact on the quality of the survey for example if they would substitute incorrectly or have made mistakes with the coding of occupations, etc. In the next survey we will use smaller clusters and smaller interviewer portions to cope with the efficiency loss.
  • In this presentation we have shown that interviewer effects can also be significantly reduced when respondents used write-in modes and thus answer questions without the intervention of an interviewer. Unfortunately, in Suriname we cannot use write-in modes on a large scale because there is a relatively high level of illiteracy in the interior, compared to the capital. Therefore we have to hire interviewers and conduct face-to-face interviews.

The construction and use of weights is currently of strong interest within the ISSP. A special working group is installed at this meeting for mapping this problem within the ISSP data and to come up with recommendations. Ganzeboom and I plan to contribute to this methodological research in future meetings.

Closing

On the last day, shortly before the closing of the conference, the representative of South-Africa showed a video to promote her country, because South Africa will be the host for the next ISSP conference in 2015. The audience reacted with approval. After some final remarks, the conference came to an end.

ISSP appeared to be indeed a matter of social attitudes.

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Tamira Sno is PhD candidate at the department of Sociology. Her research ‘Status Attainment and Social Mobility in Suriname’ focuses on studying patterns of occupational status attainment among Surinamese in Suriname and elsewhere.