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Conducting research with adolescents with disabilities: a perspective from the field

Gender and Adolescence: Global Evidence (GAGE), in line with the Sustainable Development Goals’ mandate to ‘leave no one behind’, engages with adolescent girls and boys with disabilities through a variety of research approaches. Although both adolescence and disability are increasingly recognised as a priority among the development community, adolescents with disabilities are still largely overlooked and the nature of their disabilities requires new research approaches that ensure their voices are fully captured and heard. Having worked with two groups of adolescents with hearing impairments in Jordan using participatory approaches, I  highlight lessons learnt and reflect on methods we use to tackle structural constraints of working with these vulnerable populations.

Realities of adolescents living with disabilities in Jordan

Evidence from our baseline study findings in Jordan highlight how neglected the broader capabilities of adolescents with disabilities living in Jordan are. A minority have access to education and quality healthcare, and although many adolescents have high aspirations, their opportunities for growth are rather limited. Very few enjoy opportunities to socialise with their peers and learn skills that will serve them in the future. Adolescents with disabilities are also more isolated—in both the real and virtual worlds—than their peers. This is especially the case for adolescent girls who face disadvantages due to discriminatory gender and social norms and spend the bulk of their time isolated at home:

“my aspiration is to go to school but I scarcely leave the building… It is hard for my mother to carry me down the stairs… I can only look at the other children out the window” 13-year-old Syrian girl with mobility impairment, living in Jordan).

In a recent article, we highlight structural constraints and suggest ways to address the neglect of adolescents with disabilities in conflict-affected contexts. The current body of evidence is very fragmented and focuses mostly on education and health, while neglecting voice and agency of the most disadvantaged adolescents. GAGE is stepping into this void to capture the voices of adolescents with disabilities in order to better understand what they believe will help them achieve the futures they want.

Participatory research with adolescents with hearing impairments

In Jordan, we aim to amplify voices of the most vulnerable adolescents with hearing disabilities through a variety of participatory activities. I work with particularly disadvantaged Palestinian girls living in Gaza and Souf Refugee Camps and with vulnerable Jordanian boys and girls in Mafraq. We started early this year and we plan to continue with the same participants for the next three years. This allows us to build trust and deeper relationships with the adolescents, their families and local communities.

Young participants were taught how to conduct face-to-face interviews and equipped with cameras and basic training on how to use them. We encourage them to do peer-to-peer research and think critically about their lives and priorities. For example, they were tasked to interview their parents and grandparents to explore similarities and differences in adolescents’ lives across generations. For some of the participants this was the first time to have a genuine and interactive conversation with their families. As one of the Palestinian refugee adolescent girls noted:

I spend a lot of time with my grandmother, but we rarely talk and I never thought about asking her about her earlier lifeThis was the first time I did something like this.”

When asked what they learned through the interviews and the research process in general, the adolescents’ responses were mostly related to knowing more about their parents and grandparents, seeing them in a different light, and finding out about the challenges they have faced and how they overcame these. Many participants said that it highlighted to them why they had been brought up in the way that they had. This also led the participants to reflect on their own lives and the opportunities they enjoy today as well the challenges they face. However, I was surprised to learn that most participants did not see their disability as a salient feature when thinking about opportunities they have today in comparison with older generations, and instead focused more on gender inequalities and discriminatory social norms.

In a second interactive exercise, participants were asked to identify key challenges in their lives and propose solutions to the problems they raised before individually settling on how to frame their learning and feelings through a series of photos. In a situation when communication is constrained due to limited signing skills by adolescents and teachers/ mentors alike, the use of photography as a tool was critical to capture adolescents’ insights and keep them engaged in the process. Interviews with participants’ families reveal that involvement in research is a unique experience:

I did not believe that Warda- my sister- could do activities like this. We do not have access to activities for children with disabilities like this”.

Many parents also mentioned changes in adolescents’ personality and self-confidence as a result of our activities.

Evidence from our participatory research groups will help us capture the nuances of the opportunities and challenges facing these disadvantaged young people over time, and especially in the context of significant funding shortages for refugee communities. It also will give us insights into what support mechanisms would be most conducive in advancing adolescents’ voices, in their own communities and more widely.

Challenges and a way forward

While working with adolescents with hearing impairments requires a lot of persistence and effort, it generates interesting results both for adolescents themselves and for the local communities. Most times, for these girls and boys, it represents the first opportunity to participate in any extracurricular activities. Observing how they are surprised that we are interested in their opinions and seeing how they become more and more confident in expressing themselves is a transformational experience.

Working with adolescents with hearing impairments made us rethink what it takes to reach the most vulnerable adolescents in Jordan. Participatory approaches where we engage with adolescents over a longer period – rather than just one-off interactions – is key to get deeper insights into their lives and although it requires extra effort, is important if we are committed to leave no one behind.