Page 510 -

16.2 Participants 503

whereas people with nonfluent Aphasia (the focus of their study) are generally able
to understand verbal communication.

16.2.6 PROXY USERS
In the past, some researchers would use “proxy users,” where individuals without
disabilities would represent individuals with disabilities during design or research.
This could include people with no connection to the disability and people with some
knowledge of the disability. Examples of people with no connection to the disability
include blindfolding people who can see, or tying people's hands behind their back
to simulate users with motor impairments (Sears and Hanson, 2012). These “simu-
lations” or “temporarily impaired users” are generally not encouraged for any type
of research as, over time, users with perceptual or motor impairments learn to com-
pensate by becoming more reliant upon their other senses or body parts (Sears and
Hanson, 2012). Someone who is Blind has learned to rely more on their hearing than
someone who can see. Even if the users of interest and users without any disabilities
are considered to have equal skill in some area (for instance, good quality speech),
the impairment makes users perceive the technology differently. So, for example, it is
inappropriate to test speech-recognition solutions for users with spinal cord injuries,
by using users without any impairment, based on the claim that they have similar
quality speech (Feng et al., 2005). Since users often compare a new technology to
a previously used technology or option, the comparisons are very different. Domain
experience also is an important factor. For instance, in testing technologies for Blind
people to drive cars using nonvisual techniques, it would be inappropriate to have
participants who can see but are wearing blindfolds, as they have, in many cases,
years of experience driving cars (Sucu and Folmer, 2014).
There are some limited situations where it may be appropriate to use people who
are familiar with the users and impairments to represent the users themselves. These
are generally situations where users are unable to communicate, or are unable to
process information due to their impairment. For instance, one study used speech
language pathologists who worked closely with individuals with aphasia, instead
of the actual users themselves, to get an understanding of user needs (Boyd-Graber
et al., 2006). In another study, caregivers and family members were used as the pri-
mary information sources for designing technology for individuals with Alzheimer's
disease (Cohene et al., 2005).
Another model of proxy users is to use pairs of users and their caregivers or thera-
pists. For instance, in a study about designing walking technology for people with
Dementia, pairs of people with dementia, and their primary family caregivers, were
involved in the research (Holbø et al., 2013). In another study related to tools for
therapy relating to childhood apraxia of speech, both children with apraxia of speech
and their speech therapists, were paired up for the research (Parnandi et al., 2013).
In some cases, children answered subjective questions, but in other cases, since the
children were 3–7 years old and had childhood apraxia of speech, their parents an-
swered for them. Another situation where proxy users might be appropriate is when a