Making disabled youth visible

JustEd researchers Aarno Kauppila and Reetta Mietola at the University of Helsinki.

There is a silence around disability in youth studies, especially in Finland. JustEd researchers Reetta Mietola and Aarno Kauppila wanted to make a change: “We decided to suggest a special issue focusing on disability from a youth perspective. In order to eradicate the discrimination that this group faces, the first thing is to make disability visible in both research and society,” says Reetta.

They were just finishing an article on the position of young disabled people in the new Finnish government programme, when Reetta came up with the idea:
“I reckoned it was about time to make disability and disabled youth visible in the field of youth studies. We wanted to discuss the consequences of this marginalisation.”

The result was a special issue in the Finnish research journal ‘Nuorisotutkimus’ dedicated to disability in youth studies. The special issue highlights current research involving disabled young people and their situation in the Finnish society.

“We wanted to build a more complex picture of disability – not as something that should be approached through the individuals but as a societal phenomenon,” Reetta says.

More complex picture of disability
Reetta got interested in studying young people with ‘special educational needs’ already starting her PhD.
“My research objective was largely born out of frustration with the way these young people were discussed and represented at the time both in media and in research. In youth studies, I found the perspectives and theories allowing me to represent the young people participating in my study as active social agents rather than objects of educational measures.”

Aarno used to work at a centre for disabled people for almost 10 years and he was repeatedly startled by the professional praxis.
“It made me interested in knowing why things were this way and through disability studies I got new ways of seeing disability and the different praxis that I had bumped into in my work.” In her PhD Reetta highlighted the stigmatization around disability.

“It is still seen as something private that concerns these individuals and not the community or society. Thus, even within academia we don’t know how to discuss disability.” Reetta explains and Aarno agrees:
“Disabled people are the biggest minority in Finland and still, they are utterly marginalized both in society and in scientific discussions. Maybe the obscurity says something about the attitude toward disability.”

Interviewees lacking a spoken language
Disability studies has its’ own methodological challenges, which might to some extent explain the absence of insight in the lives of disabled young people in current research. In some cases, the interviewee doesn’t have a spoken language, which means that some researchers refrain from doing this kind of studies. Sometimes Reetta and Aarno are entirely dependent on their own interpretations and observations.

“Though our interviewees lack a spoken language, we still need to write about their lives. Otherwise, these disabled people would be completely left out of research. In these cases, as a researcher, you just need to be very clear in announcing ‘who’s talking’. You need to clarify that you are presenting your interpretations as a researcher, not the opinions of a potential interviewee.”

According to Reetta, there is a dominance of professionals’ perspectives in youth studies concerning disabled young people. There is a need for making the own voice of disabled people heard:
“We mostly see the point of view of professionals, while young people and their own interests aren’t shown to the same extent. What do they see as important in their lives and what troubles them? Young people with ‘special needs’ have been mainly approached and represented in research through their impairments, such as ‘needs’ and ‘problems’.”

Very limited educational opportunities
Many efforts have been made to improve the educational and employment opportunities of young disabled people in Finland, but still they are in a very unprivileged position.

“The harsh reality is that disabled peoples’ level of education is considerably lower than among the population in general. The employment rate of disabled people in Finland continues to be around 15-20 percent,” Reetta explains.

For young people representing specific disability groups, e.g. deaf youth, young people with learning disabilities, the educational options are very limited. “The option offered to people with severe disabilities or intellectual disabilities is normally vocational special education that often does not lead to employment. The purpose for this type of education is usually very deviant from general educational policy. My ambition is to bring forth and question the educational arrangements for disabled children, young people and adults. Are they as good as they are generally presented, or are they actually contributing to the marginalization of disabled people in our society?” Aarno says.

Critical toward Finnish disability policy
The special issue shows that the current understanding of disabled youth, their lives and life circumstances are drawn from a very thin knowledge base.

“Simply put, we need more research focusing on and involving disabled youth, and this knowledge needs to be produced in collaboration with the young people themselves and with those working with them,” says Reetta. A broader knowledge base is needed particularly for influencing policy makers. Reetta and Aarno are quite critical toward the current Finnish government programme:

“Cutting key supports used by disabled people, such as financial supports for medication, housing allowances, contradicts the commitments made in the field of disability policy to enhance independent living and raise the living standards of the disabled population.”

The Finnish disability policy programme 2010-2015 (VAMPO) already recommended that disability should be considered in all policymaking, and that all policy measures should be evaluated from the point of view of disability.

“We need to produce critical knowledge to reveal how marginalisation and exclusion happens to be able to provide new perspectives for thinking about and acting on these problems. I’m very interested in exploring how things come to a change, and often why things don’t change, and how we can influence the lives of younger generations,” Reetta concludes.

Nuorisotutkimus journal (in Finnish)

Postdoctoral Researcher Reetta Mietola and PhD student Aarno Kauppila at the University of Helsinki co-edited the special issue in collaboration with Postdoctoral Researcher Anna-Maija Niemi.

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About the Author

About the Author: Charlotta Järf is in charge of the communications and marketing activities for JustEd, The Nordic Centre of Excellence, an international research network with 14 partner universities in 8 countries. With ten years of professional experience in Communications and Marketing, and five years as a TV, radio and newspaper journalist, Charlotta has a practical set of skills in strategical communications, PR, social media, graphic design, video and content production. .

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