The Politics of Making Disability Visible in Community-led Urban Research
By Dr Ignacia Ossul Vermehren, research fellow working with the Build Capacity and Participation subprogramme led by The Bartlett Development Planning Unit (UCL).
On Tuesday 11th February, we held an event on “The Politics of Making Disability Visible in Community-led Urban Research” as part of the Dialogues in Development series at The Bartlett Developing and Planning Unit (UCL).
The aim of the event was to share reflections and learnings from the action-research project “Community-led solution: Assistive Technologies in Informal Settlements” – an on-going research project in four low-income urban communities: two in Freetown, Sierra Leone and two in Banjarmasin, Indonesia.
The project maps out how local residents, including both existing and potential AT users, as well as people with a range of disabilities, are able to pursue a number of shared aspirations for life outcomes.
Generally, research in informal settlements tends to overlook or co-opt the voices of disabled people, and as such, there is a need to develop methods that engage with the specific lived experiences and priorities of disabled residents, as well as spaces to include the participation of disabled residents in the wider decision-making process of low-income communities.
The event engaged with some of the tensions of making disability more ‘visible’ in action-research, at the same time as making it visible in ways that challenge, rather than reinforce stigma. It also reflected on the role of research in creating a space for validating disability as a political identity. The session explored these tensions by reflecting on two of the methods used – photography and the rATA survey developed by World Health Organisation (WHO).
The presentations were led by Julian Walker (UCL), Ignacia Ossul-Vermehren (UCL), Mark Carew (Leonard Cheshire), Nina Asterina (Kota Kita-Indonesia), Eka Ramadhini (Kaki Kota-Indonesia), Hawanatu Bangura (Sierra Leone Urban Research Centre-SLURC, Sierra Leone), Angus Stewart (professional photographer) and Katherine Perry (Global Disability Innovation Hub).
Photography: Making research more accessible
Hawantu (SLURC) and Nina (Kota Kita) discussed the use of participatory photography workshops. They explained the process, in which a total of 120 people across both countries participated in workshops and produced 720 pictures.
Photography made the research more accessible for participants, with different types of disabilities, including those with a visual impairment, who were supported through the process and were introduced to tactile elements of the camera.
The process of producing their own material and displaying participants’ photos helped to show disability as a common lived experience in the communities.
Hawanatu gave the example of a young female participant in Freetown, who was ashamed of her disability and did not want to leave her house. However, after a couple of weeks of participating in the workshop, her attitude to sharing opinion and participating with others changed: “Before, I was ashamed but since I’ve been participating in the project I feel my opinion is important”.
Angus Stewart, a professional photographer who created photo essays with participants reflected on the use of photography in this context. His work raises interesting questions about the process of co-production between photographer and participant.
A number of participants were asked to show their everyday practices and what they do to achieve a selected aspiration (such as inclusive mobility or healthy living conditions). Participants chose the location, the clothes they wore, what practices to show, and the main narrative of the photo essay. On the other hand, Angus also inevitably had to make aesthetic decisions, a key one he identified as to always photograph participants at eye level, in order to capture them looking empowered.
During the event, some of the pictures were displayed, which provided another set of ethical decisions and concerns. As he explained, on the one hand, “pictures look nice framed”, whereas, on the other, by framing them they look disconnected to the lives of participants: “they don’t look like participants and that’s something to take into consideration”.
rATA survey: Measuring gaps and tracking progress
Mark (Leonard Cheshire) and Ignacia (UCL) introduced the rATA (Rapid Assistive Technology Assessment), a new survey developed by the WHO. This tool was implemented to more than 4,000 residents during the research. The aim was to test the technology and give feedback to WHO, identify participants, contribute knowledge to the development of the tool and generate new data.
This is important for two reasons: on the one hand, collecting data on disability supports the human rights approach, as it allows for the tracking of gaps in data and measure progress on disability, and on the other hand, it allows the identification of participants for the research. A limitation of the survey is that disabled people played a more ‘passive’ role in the survey. As we were testing a tool, we could not co-design the survey with disabled people, and instead piloted and incorporated the feedback.
The rATA questionnaire measures functional difficulty and does not refer to ‘disability’. This avoids stigma and underreporting (i.e. older people); measures across 6 domains; and acknowledges the impact of bodily impairment and environmental factors.
Another important element in how the survey deals with disability is that it measures it as a continuum instead of a fixed category (by “No difficulty” “Some difficulty” “A lot of difficulty” “Cannot do at all” in a given domain). The questionnaire included a poster with 26 images of AP – which introduced AP to interviewee and raised awareness.
We also noticed a change in perception in the data collectors (which were non-disabled). By participating in a 3-day training and implementing the survey in the settlements for 1 month, they become more disability sensitive (mainstreaming disability in other urban research) and developing advocacy around disability issues.
Mainstreaming disability in urban research: The role of grassroots organizations
Eka (Kaki Kota) was the last to present. She introduced Kaki Kota and their work. Eka reflected on taking part in AT2030 – as an opportunity to mainstream disability in their organisation and the urban projects they are involved in. As a way of involving FEDURP in the presentation, Ignacia briefly showed what Yirah (Head of Federation of Urban and Rural Poor-FEDURP, Sierra Leone) had said during the event of International Day of Disabled People in Freetown, showing how FEDURP had changed their attitude towards disability and how they want to mainstream it in the planning of informal settlements.
After the presentations, we had a Q&A session that gave us considerable food for thought and a very insightful discussion.
- How do you ensure that you keep standards when communities provide AP?
- Can you expand on the barriers and limitations of your research?
- What makes this research political?
- How have Kota Kita and Kaki Kota engaged with wider audiences? How can you have a bigger impact with organisation working with urban issues?
- How dangerous is it for disabled people to live in stilt houses in Banjarmasin? What happens when there is flooding or fire?
- How do you deal with trauma in a post conflict country like Sierra Leone, when doing research about disability?
- What are the politics amongst disabled people, between different types of disabilities?
Check out DPU’s website to find out more about where the event was held and who participated.