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.

 

 

 

 

 

 

 

 

Born into inequality: How neighborhoods influence birth outcomes in the Netherlands

Vera ScholmerichBy Vera Schölmerich / Reading Time: 7 Minutes

 

Miriam and Sofia are best friends and enjoyed growing up in the same neighborhood next to the Vondelpark in Amsterdam – one of the richest areas in the city. In her early thirties, Miriam moves to the Bijlmer – one of the poorest neighborhoods of Amsterdam. A while later, Miriam and Sofia meet up for coffee. Miriam excitedly tells Sofia that she is pregnant. Sofia replies: “Me too!”
Miriam and Sofia are both healthy, and lead a healthy lifestyle – they eat enough veggies, go to see their midwife on time, etc. Miriam’s lifestyle has not changed since her move to the Bijlmer, but she lives in a very different neighborhood. Would Miriam’s chances of a healthy baby be any different than Sofia’s, as a result of living in a poor neighborhood?

 

In other words, do neighborhoods influence birth outcomes, 

above and beyond an individual’s health?

 The answer you will find in an article my colleagues and I recently published in PLOS ONE is: yes.

The Netherlands is home to one of the highest recorded disparities in birth outcomes across neighborhoods in any developed country. In wealthy neighborhoods in Rotterdam, for example, about 3% of babies are born prematurely. In poorer neighborhoods, over 15% of babies are born prematurely, and therefore have a bad start in life, often leading to long-term developmental problems such as reduced IQ.

Previous studies have shown that the inequalities in birth outcomes across neighborhoods are partially the result of so-called ‘compositional effects’: healthier people tend to live in wealthier neighborhoods, and less healthy people cluster in poorer neighborhoods. We suspected, however, that there might also be ‘contextual effects’, meaning that neighborhoods influence birth outcomes.

But how could neighborhoods influence Miriam’s birth outcomes? There are at least two pathways. First, neighborhoods influence behavior via specific norms and social control. Imagine Miriam – who is visibly pregnant – waiting for the bus, sitting next to a man. Whether this man will light up a cigarette right next to her partially depends on the existing norms in this neighborhood, and how other people would react.

Second, neighborhoods might influence birth outcomes via biological pathways. Miriam has moved to a neighborhood with much higher crime rates and lower levels of social cohesion amongst residents. Miriam is therefore more likely to feel more stressed, and stress is a major risk for premature birth.

To find out whether neighborhoods influence birth outcomes, we used data on the characteristics of all inhabited neighborhoods in the Netherlands (more than 3400 neighborhoods), as well as data on individual characteristics and birth outcomes of all pregnant women in the Netherlands during the last 8 years (about 1,6 million cases).

We found that neighborhoods indeed influence birth outcomes. More specifically, between 2-5% of the variation in birth outcomes can be attributed to neighborhood effects. To go back to Miriam and Sofia: this means that Miriam will have higher chances of an unhealthy baby due to her move to the Bijlmer – a poor neighborhood with lower levels of neighborhood social cohesion. Our results show that both of these characteristics were the strongest neighborhood predictors of adverse birth outcomes.

For Miriam, the negative effects of her neighborhood are bad news. For policy makers however, our study is actually good news. Currently, policies to reduce inequalities in birth outcomes focus on educating women to lead healthy lifestyles – with disappointing results. Our study indicates a new way of improving birth outcomes, namely by adopting a contextual approach. We recommend investing in improving neighborhoods, such as allocating more funds to reducing poverty and crime rates and increasing social cohesion (e.g. by increasing the amount of parks and neighborhood initiatives).

Instead of focusing on educating a small amount of pregnant women, improvements to neighborhoods have the advantage that they influence a large number of residents in the neighborhood. A shift in policy might reduce inequalities in birth outcomes across neighborhoods – and lower the amount of babies that are born into inequality.

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Vera Schölmerich completed her joint-PhD at the Department of Obstetrics and Gynaecology (Erasmus Medical Center) & the Department of Organization Sciences (VU University Amsterdam).She is currently an assistant professor at Erasmus University College, Rotterdam.