I am Shaan, a Master's in HCI student at the University of Maryland,
and I will be presenting our case study on designing for and with people with
dementia using a human-rights based approach.
In UCD, technologies are typically designed around the needs and preferences of
participants.
However, aside from the IRB process, the work of ensuring that research and resulting
technologies do more good than harm is left to the varied ethical sensitivities
of individual researchers.
When it comes to designing technology for people with disabilities,
particularly people with cognitive disabilities such as dementia, there is
also a moral imperative to ensure that their human rights are consciously integrated into
the process and included in the end product.
In 2006, the UN adopted the CRPD, affirming that people with physical and mental
and cognitive disabilities must enjoy the same human rights
as everyone else.
These rights are based on principles of dignity, liberty,
equal and fair access to justice, health, education, privacy,
freedom of moment, self-expression, and the right to make ones own choices.
This slide is from my collaborator, Mary, who has done work identifying the
rights as they apply to people with dementia.
In this case study, we introduce a human-rights based approach to user-centered
design which draws on the UN CRPD as a way to recognize moral imperatives
in design.
We conducted two versions of a three-day-long design workshop in
November 2018 and 2019 incorporating our human rights-based approach.
These workshops engaged undergraduate students in creating technology for and with
people with dementia.
Two people with dementia, Mary and Diana, who are also advocates for dementia rights,
joined us in teaching students how to weave principles of human rights
into their technology designs.
In our paper, we discuss our novel approach that centers human rights through
different series of the process, in particular the 4 steps listed here,
and actively involves people with dementia in the process.
In the interest of time, I will discuss key findings from the Generative Design and
Evaluation phases. For complete details, please see our paper.
In the generative design phase, students were encouraged to sketch ideas based
on their discussions and ideation process.
One of the ideas which participants actually went on to prototype was
the Smart Mirror that would help people with dementia apply makeup to correct areas of
their face so that they could feel confident going out in public.
This idea was strongly informed by the human rights themes of making one's own
decisions and self-determination that had emerged from the ideation process.
In the evaluation step of the design process, one of the evaluation methods we used was
the human rights-based heuristics. We co-created these heuristics with Mary
and these were inspired from her life's work on how the CRPD articles apply to
people with physical and cognitive disabilities such as dementia.
We observed that these heuristics led to critical evaluation of the students technology
designs as participants tried to come to a shared understanding of the CRPD Articles.
One example of this was when students were evaluating their assistive buddy prototype
which followed the person with dementia around and provided assistance.
When working, when going over the heuristic created for CRPD article 18, initially, the
students were unclear how it applied to their prototype.
Then Diana, one of our participants living with dementia, explained to them that she felt
it important to understand what adequate protection meant.
She gave an example of a caregiver who did not want the person with dementia to be
going anywhere alone and how that could impede their human rights
since everyone should be able to do things, such as going out alone, within reason and
depending on their capability.
The students then tried to integrate this understanding into their prototype
ensuring that the robot does not violate this right but also actively includes it
by allowing users to set their own privacy and autonomy configurations.
because each person with dementia may have different levels of autonomy
over their decisions and actions.
To sum it up, we observed that incorporating human rights in designing with people with
disabilities can help spur important conversations around
whether the technology respects and includes their basic human rights or not.
Thus, we suggest that human rights heuristics should question whether pertinent
rights have been included and respected in the design, rather than merely check for
violations.
Also while in these workshops we refined the human rights-based heuristics,
we also see opportunities to further investigate how human rights can be
incorporated into other technology design practices, such as card sorting.
Finally, in this study, we were able to see the significant
role that people with dementia can play in the design process,
going beyond being co-designers but also serving as teachers, leaders, mentors,
and advocates for dementia rights.
To know more about our human rights-based approach,
please make sure to check out our paper. Thank you!