Conducting design exercises with adults with cognitive disabilities led me to reflect on ongoing challenges and identify opportunities to make participatory design more inclusive.

1. Work collaboratively to reduce exces-
sive disclosure. Those with autism and
related disabilities often find it challeng-
ing to predict outcomes. In a research
setting, they may not understand the
ways that their contribution to the re-
search might be shared. With your par-
ticipants, work through specific examples
of findings that might be shared and with
what kind of audience.
Explore how sharing experiences may
impact interpersonal relationships.
Those who have challenges navigating
social situations may not understand
boundaries for retelling stories involving
others in their life. With your co-design-
ers, envision potential consequences that
could impact relationships in their lives.
Consider how reflection may tap into
uncomfortable feelings. While we trust
our participants to know themselves
and their limits, some may inadvertently
disclose details that trigger their anxiety
or panic. Be particularly mindful of tone,
phrasing and setting with participants
who have emotional disorders.
Creating a safe space for co-design
Lessons from working with adults with developmental disabilities
People in underserved segments rarely
are the target audience of user research
and have little exposure and knowledge
of what it means to contribute.
EASE INTO SESSION PROVIDE FLEXIBILITY EVOLVE PARTNERSHIPPREPARE FOR RISKSINTRODUCE INQUIRY
Make the process accessible.
Bring the co-design experience to your
participants on their turf and on their
schedule. Shape the structure of the
research fit their needs—for instance,
medical issues and disabilities can make
extended activities uncomfortable.
Review what informed consent
means. Consent is not informed if the
research subjects don’t understand the
implications. Make sure to explain the
right to withdraw consent and provide
them the means to access their rights.
Keep in mind that informed consent can
demonstrate independence and provide
an opportunity to feel empowered.
Explain the goals of co-design and
how feedback fits into the research.
Introducing the project and the goal of
identifying insight sets the focus and es-
tablishes partnership. Even so, the ses-
sion may seem like an insurmountable
task. Break down the activities so that
participation seems manageable and so
that it’s clear what details need attention.
Take responsibility for the relationship
that you have cultivated and support
your participants beyond the session.
Debrief to support self-reflection.
As a structured activity, debriefing can
provide an opportunity to reflect on
one’s experiences and learn from one
another. Many with cognitive disabilities
have difficulty self-reflecting in the mo-
ment, and practice fosters the skill of
self-advocacy.
Leave things better than you found
them. Draw from experimental psychol-
ogy and run a wellness check to ensure
that no one leaves negatively impacted
because they participated. If things get
heavy, lighten the mood by praising
contributions or remembering laughs.
Continue collaboration through-
out the life of the project. Re-invest
in those who went out of their com-
fort zones to participate. Invite current
co-designers to upcoming opportunties.
Share learnings with the greater
community. Difficulties with expressive
language inherently prevents self-advo-
cacy by co-designers. Act on their behalf
and share your insights.
Prepare activities that tap a breadth of
skills and can provide accommodations
across multiple dimensions.
Create exercises that support expres-
sion across different modalities. Rec-
ognize limitations caused by disabilities
that make expressive language difficult
in speech or writing. Provide different
ways for co-designers to express them-
selves including drawing and enactment.
Not all methods are for all people.
Research methods often require skills
in abstract thinking—a barrier to those
with certain deficits. Ground research
activities in concrete past experiences
with directed storytelling or in the physical
world using maketools.
Public interactions may raise social
anxieties. Provide considerations for
expressing oneself privately or asyn-
chronously. Facilitate openly sharing
during activities but also allow for alterna-
tives that don’t single anyone out.
Exchanges may require elicitation.
Participants who have difficulty with
social cues may need support with
turn-taking, reciprocity and social eti-
quette when participating in groups.
Be ready to prompt co-designers and
coach others participating to be inclusive.
Warming up to the space and shar-
ing with others. Take time for exercis-
es where participants can find a rhythm
and build familiarity, since adjusting to
change can be difficult. Exercises that
double as ice breakers can support those
with social disabilities and reduce fear of
ridicule and failure.
Provide instructions, guidance and
examples. Communicate in as many
channels as necessary to ensure all
co-designers understand the goals and
activities of the session. Don’t let the
exercises be a memory test simply be-
cause steps aren’t listed out.
Listening to co-designers can act to
affirm their experiences. Since ev-
ery response reflects a valid viewpoint,
build activities that reinforce this stance.
When asking questions, probe on both
positive and negative answers so that all
participants can get a sense of validation.
Recognize everyone in the group.
Moderate to ensure that those with diffi-
culties initiating can contribute. Don’t let
your research be another venue to silence
those with communication disabilities.
Early on, provide easy activities to build
comfort and familiarity; encourage par-
ticipation with feedback that recognizes
contribution.
There is reward in involving participants
but also the responsibility to mitigate
negative impact on their experiences
during and after research.
BEN ELGART PresenTense Boston Fellow