Carli Friedman
UCEDD Trainee and former LEND Trainee
Doctoral Candidate, Disability Studies
University of Illinois at
Chicago
Kate Caldwell
Former LEND and UCEDD Trainee
Postdoctoral Research Fellow, CEED Project
University of Illinois at Chicago
In many
fields it is almost impossible not to use jargon. For example, The
CEED Project is
working to bridge the fields of disability studies and entrepreneurial studies
to provide entrepreneurship education and training to service providers and
people with disabilities. Accordingly, we often find ourselves having to use
terms, phrases, and acronyms from both disability and business. However, this
can make the work we are producing inaccessible to people with intellectual and
developmental disabilities (I/DD). It also makes it hard for their family and
caregivers to understand the results of our research, particularly if they have
lower-literacy levels or use English as a second language. Accessible plain
language summaries of publications provide individuals with something they can
print out that is easy to understand, and which they can use in advocating and
talking to policymakers.
The
goal of this approach to knowledge translation is to break down complex
concepts into the most essential form by using plain language and universal
design so that the widest possible audience will be able to understand it --
including people with I/DD. Technical and academic language can be an access
barrier for many people with and without disabilities. As such, it is important
to use knowledge translation to bring research back to the community, especially
to the very audience who are the subjects of the research.
To make
plain language summaries one must first break down the key concepts and ideas
presented in the publication. To do so, it can be helpful to make a rough
outline of the publication that can then be written into short summaries. This
process is discussed in more depth in our best practice recommendation. Here we discuss the use of plain language summaries not
only as a disability access issue, but also as an open-access issue.
During
this process it is important to continuously question if the concepts can be
explained further and whether the language is truly accessible. Sometimes
making a publication more accessible simply requires using synonyms for complex
language, while other times concepts need to be explained in more depth. It’s
important not to assume an abstract concept does not need to be explained because
it is familiar or common. Similarly, it’s also important not to exclude an
abstract concept because of an assumption that people with I/DD may have
difficulty understanding it. Often this means it just needs to be presented in
more accessible terms. You can find examples of our plain language summaries on the CEED website.
About the CEED Project
The idea for making plain language summaries for published
articles for The CEED Project came about when Kate began presenting at
conferences on disability employment and entrepreneurship, citizenship, dyadic
interviewing and inclusive research methodology. She would often talk with
self-advocates with I/DD and their families who were interested in learning
more about the topic, and they would always ask for more information on this
research. In particular, they wanted something that they could take with them
and use. However, it felt insufficient to hand them an academic article that
had been written for a completely different audience. Moreover, since it was
written for academic publication the jargon level was extremely high! She
realized just how often the very people who were supposed to benefit from the
research had inadvertently been excluded from understanding the results because
of how it was written and the language used. There had to be some way to make
these articles more accessible for people with disabilities and their families.
Since then, the underlying idea has been to provide summaries in plain language
for these articles, which indicate what the full-text contains. That way, if
someone wants or needs more in-depth information they have the option of referring
to the relevant area of the article or they can contact us.
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