BRIANNA BLASER: Excellent.
So thanks for joining us today to talk about technology
and chronic illness.
I was really excited this past fall when
I saw that there was a paper at Assets
and then McDonnell and Kelly Mack who are joining us today
and two other coauthors wrote about this.
And I watched their video and I was so excited.
And I said, I want to continue this conversation.
So I'm so happy that they agreed to join us today
for this conversation.
And we have two panelists who will be joining us today
as well, Litany Lineberry, excuse me,
from Mississippi State and Sarah Coppola
from University of Washington.
And we'll talk about that.
So without further ado, I'm going to turn it over
to Emma and Kelly.
And throughout you can ask questions in the chat
and during the panel to raise your hand if you
want when we get there.
So I'm going to stop talking and turn it over to you all.
KELLY MACK: All right, let me get these slides shared.
Do things look like the start of a presentation?
BRIANNA BLASER: It looks perfect.
KELLY MACK: Awesome.
All right.
Thanks so much, everybody, for joining today.
My name is Kelly Mack.
EMMA MCDONNELL: I'm Emma McDonnell.
KELLY MACK: And with our co-authors Leah Findlater
and Heather Evans from our University of Washington here.
We wrote a paper titled Chronically Under-Addressed:
Considerations for HCI Accessibility Practice
with Chronically Ill People.
This is a paper that appeared at the Assets 23 conference, which
is a big computer science conference focused
on accessible computing.
And it was nominated for best paper.
And so we're really excited to share this work with you today.
EMMA MCDONNELL: Yeah.
And we're going to begin with our motivation.
Globally, billions of people have a chronic illness,
which we define as one that isn't expected to go away,
likely will not be fatal, but does cause disruptive symptoms.
While HCI, or human computer interactions, health research
has explored the medical technology
needs of chronically ill people, HCI accessibility
has not yet broadly integrated chronic illness
into our research focus.
And so in this paper we articulate an opportunity
for future HCI accessibility research
to work with and support chronically ill people.
KELLY MACK: And through this motivation,
we arrived at our research question, which
is what would it look like to include
chronically ill people within HCI accessibility research?
And to understand this question, we
ended up developing three tenants that
are core for designing technology for people
with chronic illnesses.
We then applied how these tenets can be a useful lens
to understand chronically ill people's technology
use through three case studies of Emma
and my own experiences with technology,
as two chronically ill people.
And then finally through this process
we ended up developing a kind of a useful framing, which
we call consequence-based accessibility, which
is a way of looking at accessibility for chronically
ill folks, which we'll go in more detail into later.
EMMA MCDONNELL: Yeah.
And we're going to begin by outlining our tenants.
Our first tenant is beyond patients.
We must view people with chronic illnesses as more than medical
patients, but rather as people with valuable expertise
and non-medical access needs.
A narrow medical focus of our research
misses the majority of chronically ill people's lives.
I don't live at my doctor's office,
but that is what we focus on when we build technology
primarily with a health focus.
Additionally, many chronically ill people
experience trauma and disbelief at the hands
of our medical providers.
So a project that is begun in collaboration
with medical providers might miss the perspective
of many chronically ill people who
have no interest in further subjecting themselves
to collaborating with doctors.
Yet, in spaces that chronically ill people create,
such as social media communities,
extensive expertise is clear.
Chronically ill people share our experiences and ways
of navigating the world online and offline
in community driven spaces.
Figuring out ways to create access
in a system that does not prioritize
chronically ill people's medical care or non-medical access
needs.
And we see this as an opportunity
for HCI accessibility to bring its capacity
to engage disabled folks as stakeholders
without a necessary medical framing
in order to address non-medical access needs.
We are the prime candidates for the kind of support
that HCI accessibility can create.
KELLY MACK: Awesome.
Our second tenant is what we call variability of ability.
And this relies on the principle that chronic illness
can cause high variability in people's abilities, which
is crucial to consider when designing technology
to meet chronically ill people's access needs.
So at its core, this tenant is just talking about the fact
that everybody is different.
Two people who have the same medical diagnosis
could have great variety in how their symptoms are expressed
in their bodies and the experiences
that they've had with those symptoms,
but even within a single person people's abilities can
fluctuate so widely.
And in the paper we name two different types of variation
to consider when designing this technology.
There's baseline changes to ability or baseline
variability.
And as an example of this, you could imagine
somebody who's having a flare.
There's a lot of chronic illnesses
where it kind of follows a pattern of periods where
of onset of symptoms and very strong ways and then
it lessens and it kind of ebbs and flows.
So there could be days where the baseline variability
of your abilities is high.
And you wake up having way less ability
to do things than usual because you
have high fatigue, high pain levels, high nausea, things
like that.
At the same time, on a even shorter time scale
we can think about action determined variability.
And what we're referring to here is
the fact that a lot of chronically ill people
when they take an action, they might end up
with a very drastically different set of abilities
after performing the task than before they performed the task.
So one example that's kind of infamous within the chronically
ill community is showering.
So for people who aren't chronically ill,
you might take a shower and feel refreshed or relaxed
afterwards.
When for a lot of chronically ill folks
when they might be fine before showering,
after showering their symptoms are oftentimes much more severe
and significant.
For example, being dizzy or fatigued or things like that.
So consequently you have to develop technology
with adaptability in mind when you're
catering to these constantly fluctuating abilities,
either on a day to day basis or even hour to hour,
minute to minute kind of basis.
EMMA MCDONNELL: Our third tenant is include the body.
Research with people with chronic illnesses
must be done using a model of disability
that accounts for both the physiological and
sociopolitical barriers they face.
Kelly and I both come at these questions with the disability
studies background, as does one of our co-authors, Heather
Evans, who is primarily a disability studies scholar.
And this is where we're drawing a lot
of our theoretical perspectives from.
But disability studies historically
has two dominant paradigms to explain
how people conceptualize disability, the social
and the medical model.
Under a medical model, somebody's body
is broken and needs fixing.
And therefore it's the job of doctors and technologies
to make that person's body more normal.
Under a social model of disability,
disability is a natural facet of human diversity.
And when disabled people can't access the world,
it's because the world was not built
with sufficient anticipation of all the kinds of bodies
that can exist.
These have been really useful tools
for shaping conversations and moving towards a more political
understanding of disability.
But this duality doesn't fully explain the experience
of chronic illness.
For someone who's experiencing chronic pain,
no amount of social access of infrastructural access
is going to eliminate the pain at its core.
But they might not want to revert fully
to a medical model view of seeing themselves as broken
and only in need of fixing and not in need of accommodating.
There are other theorists within disability studies.
Alison Kafer and Tobin Siebers are two
that we draw upon, who provide frameworks
to understand the ways that bodily and societal
factors interact.
So this is obviously relevant if you're
thinking about chronic illness in a disability studies
perspective, but it's important in an HCI context as well.
Because HCI has taken on some social and medical model
framings to guide our work in the last decade.
And as a result, don't always see ways that HCI accessibility
might be relevant to people with medical needs
that they do want to address.
To work with chronically ill people,
it's important to pay attention to people's bodily realities
alongside social discrimination.
So to do this work, we need to be able to do both.
KELLY MACK: All right.
And so now we're going to shift a bit
and talk about some case studies that apply these tenets.
So in our paper, we present three case studies
around how technology and chronic illness
intersect in our lives and how our three tenets can
be applied to these real world examples to help make meaning.
You can learn more about how technology supported
remote work, grants us access in our paper,
but today we're going to cover our experience accessibly
sharing and consuming tech TikToks and hacking text
to speech technology to make graduate school more
accessible for ourselves.
All right, so to start a bit of context,
I have very high motion sensitivity, which
gets triggered in videos a lot.
And specifically in how most TikToks
are filmed and shared these days.
It's often someone taking their phone
and walking around with it and shaking it.
And that kind of shaky, like non-tripod and camerawork
can make me really nauseous really quickly.
Consequently, I have to be very careful
and oftentimes don't use TikTok because so many of the videos
are triggering.
And I can't predict if they're going to be triggering or not.
I just kind of have to look at it
and see if it starts making me sick or not.
So consequently, I often don't use a lot of TikTok
despite there being a lot of content on that platform that
would be interesting to me.
EMMA MCDONNELL: And I do not have any particular motion
sensitivities that impact my ability to view TikTok
but Kelly and I are good friends and I like sharing videos
with the people who I am good friends with.
And Kelly and I over time developed
the process where when I send a TikTok to her before,
I send it, or any form of video content,
I provide a motion description.
Often this involves me primarily sending
TikToks that are steady, with a guarantee in advance
that this is a steady camera.
It's all tripod.
But if I wanted to send something
that was mostly steady, I might provide a description.
Suggesting that after someone says, "and then
I got my coffee" the video would be steadied.
Or that while the camera is moving the whole time,
the entire point of the video is the audio
and that motion is just to keep someone listening.
So Kelly could safely consume this TikTok
if she didn't look at it and just listen to it.
Getting the equivalent experience
of enjoying that content without getting herself sick.
KELLY MACK: And so when Emma does send me
some of these TikToks with these descriptions,
I then choose if and when I want to consume the TikTok.
Because occasionally Emma will send something
with a bit more motion, because it's something
that she knows I really like.
For example, I really love dancing.
And so sometimes she'll send me a dance video where
it's like, OK, the camera does pan a bit
and it's a little bit motion-y but it's really cool
and I think you're going to like it.
So when I get a message like that where it's like, OK,
this might trigger my symptoms.
I have to do some math around if and when I want to consume it.
Maybe I'll consume it at the end of my day right
before going to bed so if it makes me sick
at least I know that I don't have anything to do afterwards.
Or maybe I decide that actually I'm so nauseous right now
I can't risk getting any more stimulated than I currently am.
And so I'll choose not to watch it or watch it
on a different day.
EMMA MCDONNELL: And this is an imperfect process.
I sent Kelly an inaccessible TikTok last night
without a good enough motion description.
But we get it right a lot of the time
through conversation, feedback, and paying attention
to what works.
KELLY MACK: Exactly.
So now thinking about how we can look at this experience
through the lens of our three tenets.
To begin with beyond patients, we
see that we really are considering
people with chronic illnesses beyond a patient framing.
For example, we're not considering
how they access medical care or even work,
but recognize that people with chronic illnesses
are full people and they want to have fun
and consume TikToks with their friends.
And there's ways that we can make that happen.
This process also relied on deep embodied knowledge
that Emma and I have developed over time of being friends
and discussing like she mentioned.
So this isn't the type of solution
that you necessarily even get from a medical provider, right?
It's something that we created through this friendship
and knowledge of myself and sharing that with Emma.
Moving on to the second tenant, variability of ability.
What I mentioned at the end there
of how I kind of do this what I like
to call consequence calculus of like what will the consequences
be if I consume this TikTok?
This all revolves around this idea
that my abilities fluctuate greatly
or my symptoms fluctuate greatly.
And in this case, this would kind of
be an action determined one where
by watching the TikTok afterwards
I may be way more sick and unable to do
tasks for a couple of hours or something like that.
So again, this variability of ability is key.
And then finally looking at including the body.
Adopting a purely social lens or social model of disability lens
if this situation doesn't capture the full experience
of what happens to me if I encounter
the thing that's inaccessible.
It's not just that I can't consume it,
it's that I'm very, very sick afterwards.
And that physical discomfort while again I
don't want to be viewed in a medical lens of disability,
it is important to think about the realities of how
my body feels and how it responds to these things,
not just the social practices surrounding this exchange.
All right, moving on to text to speech.
I'll start off by sharing a bit about my experience
for the second case study.
So many days reading with my eyes
can make me dizzy over time.
So I often can choose large chunks of text
with text to speech tools.
Sometimes I use a screen reader.
Screen readers can go very fast and require no internet access.
Other times I use online text to speech tools.
Some of the visual interactions of the tool that I
use, which is called Natural Readers,
which I should probably drop in the chat because so many people
have found it incredibly useful if you like consuming things
auditorily.
And some of the visual interactions of this tool
are useful to me, such as being able to click where
in the document to start reading.
But I have to turn off others due to my motion sensitivities,
such as the highlighting of each word as it's read,
which is kind of the default setting of the tool.
While this tool limits my reading speed
and requires internet, it works really
well on PDFs, which are often not fully screen
reader accessible.
EMMA MCDONNELL: For me, text to speech
is also a significant access solution
even though I don't have any symptoms that are directly
triggered by reading.
Rather I often experience fatigue or malaise
that makes being even upright enough
to be reading a computer difficult. And at the end
of the day, often struggle with brain fog, which
makes sitting down and reading an academic research
paper fully visually a pretty impossible task,
but a pretty crucial part of my job as a graduate student.
I actually found text to speech in talking to Kelly.
And found that the Natural Reader's tool that she uses
meets many of my access needs.
The highlighting feature that can make Kelly nauseous
is really useful to my brain when
I am so brain fogged that I need both the auditory
and visual stimulus to be able to follow what I'm reading.
In this way, text to speech significantly expands access
through different settings for both Kelly and I.
We'll now apply the tenets and see the kinds of technology
implications that come from this analytical lens
on our experience.
First, beyond patients.
Text to speech addresses access needs
outside of a medical context and with commercial technologies.
One of the things that I think is
kind of neat about this example is
screen readers are the bread and butter of a lot of HCI
accessibility research.
But they're not often considered in the context
of chronic illness.
And as Kelly and I's experiences alone demonstrate,
there's divergent experiences and divergent needs
within the community of people who
might find screen readers to be a really accessible tool.
And this is a tool that accessibility research
knows how to think about.
It's a place where medical providers would
be far less capable of helping.
Second, variability of ability.
Our text to speech use depends on variable ability.
It's not intelligible why Kelly and I would sometimes
need a screen reader and sometimes
not despite the fact that we're both sighted people
without understanding that ability varies.
And this is a tool that's particularly useful for both
of us when we're in a flare, when motion sensitivity might
be higher or when I'm struggling to be upright
and looking at a computer in a way that
is moving my work forward.
Finally, include the body.
Text to speech does not fix or normalize us
to some non-disabled ideal, but it addresses physiological
and not only social barriers.
Kelly and I are using text to speech as a direct response
to bodily experiences, which also
has complicated social context, but needs
to include both to understand why
this would be an appropriate tool for the moment.
KELLY MACK: Awesome.
And finally, we're going to conclude today
by talking a bit about this framing
of consequence-based accessibility.
Oftentimes accessibility is thought of as a binary,
where a person can or cannot do something like climb a flight
of stairs.
Sometimes it's discussed as a spectrum,
going from where a task could be impossible or easy to do.
But in both of these paradigms the accessibility
of a task to someone is considered static.
With chronically ill people, this just isn't the reality.
Chronically ill people often physically
perform inaccessible tasks.
I could read with my eyes for hours,
I would just be extremely ill afterwards.
Someone with IBS can physically eat food,
they just might be very sick afterwards.
And therefore, what defines accessibility
for many people with chronic illnesses is not
innate physiological ability to perform a task,
but rather being able to perform a task
and remain in some kind of reasonable state of existence
afterwards.
EMMA MCDONNELL: And this is, I think,
a really exciting context to think about technology design
within.
Because there are many reasons people
might choose to do something that is inaccessible to them
and weather the consequences.
It might be a video Kelly wants to watch.
Thanksgiving dinner might make me sick,
but it might be my favorite foods.
So if we're thinking about how, especially
in a world with AI and machine learning-based
tools, and sensing-based tools, how
you would build an adaptive tool for someone
with a chronic illness.
You have to build in the understanding
that someone might choose to do something
that they know isn't going to leave themselves reasonable
afterwards.
But that is a crucial part of their decision
making around their bodies.
So in a consequence-based accessibility,
world the lines between accessible and inaccessible
are necessarily blurry, which is we
think a really interesting nuance
to add to how we think about technology.
So that is the content of our paper.
So thank you all so much for listening to this presentation.
Again, our co-authors are myself and Kelly, who led this work.
And it was advised by professors Leah Findlater and Heather
Evans.
It was funded by the NSF and Create Here at UW.
Thank you all so much.
BRIANNA BLASER: Excellent.
Does anybody have any questions before we
move into the panel discussion part of our presentation?
I see some applause.
Excellent.
I really enjoy hearing about the work that you're doing.
Maybe we can start by talking about--
or maybe we should--
yeah, OK, that's where I'm going to start
is what's an example of a technology that
wasn't built for people with chronic illnesses that's
helped you?
Are there any ways you would change that technology
to better suit your needs?
EMMA MCDONNELL: And just to clarify,
our panel is not just Kelly and I,
so this question also goes out to Litany and Sarah.
BRIANNA BLASER: Yes, absolutely.
Sorry, I should have clarified that.
And maybe Litany and Sarah as you
answer this question you can tell us a sentence or two
about yourself.
LITANY LINEBERRY: OK.
Hello, everyone.
I'm Litany Lineberry.
I am a PhD student at Mississippi State University,
where I also teach an intro class to computer science
and engineering.
For me, most recently that I have utilized actually
in my classroom is they have microphones for faculty now.
And so with my chronic illness sometimes I have to sit down,
so I can't always be standing and projecting my voice.
So I have really been utilizing that this semester
due to my heart defect.
So that is something that wasn't necessarily created
for my chronic illness, but it's much appreciated.
SARAH COPPOLA: Hi, I'm Sarah Coppola.
I'm a faculty member at University of Washington.
And I would say just in general remote access
has been really important.
Zoom, FaceTime, just having the ability
to do things asynchronously and remotely
has definitely been useful.
Even before COVID, I was really happy to have those options.
Now they are so much better.
KELLY MACK: Yeah.
This is probably a couple other random examples from my life.
Audio descriptions is one that is
built with an accessibility intent,
but is not traditionally thought of for people
with chronic illnesses.
But yeah, use the heck out of those.
And love that Netflix all the way at the bottom
it's not yet at the top, but all the way
at the bottom you can filter by audio
described and captioned content.
And that's really helpful.
On the non-accessibility side of things,
they're not intended to be an access tool,
my bike is an awesome mobility aid a lot of the time.
If I'm like struggling at the end of the day,
it's nice and stable and gives me
something to grip on to as I'm walking
home, which is also nice.
EMMA MCDONNELL: Yeah.
Sarah kind of led with my answer as well
because I would say Zoom acts as a really significant
accessibility aid for me.
The ability to flexibly say, it's
not going to be a good idea for me to be on campus today.
Or if it is already an online class,
even the ability to lean back in ways
that are pretty inconspicuous on camera,
but also be able to go off camera and take class laying
down is a thing that is technically possible
in a classroom, but raises a lot of--
just it makes difference very visible in a classroom.
And often there's not a lot of places
I'd love to lay down while in class, whereas when I'm at home
it can be less visible.
People can just trust that I'm doing what I can do.
And also makes the not having to go in barrier is really useful.
BRIANNA BLASER: Excellent.
I also will say I just love that in Zoom
if I don't want to talk, I can type stuff in the chat.
Ask questions in the chat.
I am much more likely to engage that way in a lot of things
than I am necessarily to engage verbally.
As you look 10 years down the line,
what would you like to see in terms
of technologist's engagement with chronically ill people?
LITANY LINEBERRY: For Litany again, for me
personally, especially being on the side of my degree
in computer science is really talking individually
with or in a group with people with chronic illnesses
and asking them those questions of, well, I have this idea.
How could this fit your specific illness instead
of having it generalized?
And thinking that covers everyone.
So that's for me.
KELLY MACK: This is Kelly.
I would love to see people who have chronic illnesses being
thought of as having valuable expertise
and not be being secondary to doctors,
at least in a lot of cases with HCI-based solutions, right?
Like I've lived with this for years.
I know what I need really, really well.
Like sometimes maybe you don't even
have to talk to doctors if we're just
talking about how to make work more accessible to me.
So that's what I'd really love to see a shift in perspective.
Yeah.
EMMA MCDONNELL: I think--
and I think this is one of the reasons Kelly
and I wrote this paper, but we combed the HCI literature.
And even in papers that adopted a more like accessibility type
approach, more like people have social needs
and we could support social needs.
It's not framed in context of either disability
or accessibility.
And I think we are living in a world
where with the wake of long-COVID,
the biggest growing portion of disabled people
is going to be people disabled by chronic illnesses.
And understanding that this is a constituency that
is relevant to design for feels like the really obvious step
one.
And I would hope that 10 years down the line
we can get past that step one.
But bringing in understandings of variable ability of fatigue
and brain fog as types of cognitive disabilities
to design for.
I think a lot of chronic illnesses
present symptoms that fall into even the category of more
traditional understandings of disability
that HCI has not paid as much attention to,
that accessibility has not paid as much attention to.
So like putting that even in the center
of how we think about accessibility
and who we're working with.
SARAH COPPOLA: Yes.
This is Sarah again if I can build off of that,
I think also questioning the idea of productivity
when we design productivity tools around these
not just the variability of flexibility,
but questioning what that even looks like.
I think productivity tools are sound so ablest in the way.
We can just get more time out of day.
Questioning that, knowing so much of our population
is disabled.
It's very particular ways of long-COVID
that are just in conflict.
BRIANNA BLASER: I think that's really interesting
to think about from the universal design
perspective of like everybody gets sick sometimes, right?
And how can those benefit other folks in some of those ways?
So Emma and Kelly talked about three tenets beyond patients,
variability of ability, and including the body.
Can you think about how these tenets
might come up in your day to day life
or impact your experiences?
EMMA MCDONNELL: I can start this one.
Of the things that has felt very relevant to my life recently
is like often when we think about work like the idea of,
oh I might need to take a sick day,
is like maybe even the only thing close to the idea
that we have that bodies don't work all the time.
And like I very rarely experience a sick day,
but I experience a lot of sick hours.
I experience those most of the days.
So how I like plan my life around how
I might be down for the count for an hour and then
able to work later in the night.
And that kind of just rather extreme to many like ping
ponging of what my capacity at any time of the day
looks like is something that I don't think we
have a good social anticipation for.
And I'm not quite sure even how technology starts
to build for that assumption.
But that is something where I definitely
feel the variability of ability in how I plan my life.
LITANY LINEBERRY: For me, I guess
[INAUDIBLE] beyond the patient and also the variability one
is with my chronic illness, especially at work,
I sometimes get fatigued.
So I have to make sure that I can--
so we have stairs, but we also have an elevator.
So sometimes if I feel up to it I can take the stairs.
If I don't, then I take the elevator.
So looking at things like that, but also as far as beyond
like walking just in general.
So on campus now they have--
they're not golf carts, there's like scooters or something
that you could use.
So that has been very beneficial and a good idea.
So looking at, OK, I know my limitations.
I know I sometimes can get fatigued due to exertion.
So what are ways that I can limit that while I'm at work
and still get my job done?
SARAH COPPOLA: I'm an ergonomist by training,
so I'm always thinking about bodies
and the variation of bodies.
And so for me it's a lot of having access
to not very expensive, but all sorts of tools.
So I'm showing a pink Logitech ergonomic mouse.
And like I have to have I have it
here with a ring on the back of my phone.
And just using voice to text, just having the option to use
variable input technologies.
Having the ability to work around races and mobility
aids without facing a lot of stigma for using them.
I think it's sort of, yeah, so it's the variability but also
[INAUDIBLE]
BRIANNA BLASER: I want to invite two questions
from the audience.
So if anybody has a question, you
can raise your hand in unmute or put it in the chat.
But I'd love to get some conversation going
because I know we have a lot of folks here
who have viewpoints that we'd all like to hear as well.
So I'll ask another question while folks are thinking
of questions they might have.
What are some challenges you experience
in work or school or personal life
where technology could help?
LITANY LINEBERRY: So for me it's grading.
So like I said earlier, I teach an intro
of the computing class.
And sometimes I don't have the energy due to I
have two chronic illnesses.
So sometimes I really don't have the energy to grade.
So sometimes it takes me longer to grade
than usual or other professors or instructors.
So maybe having within--
and we're all like they submit all the work online.
So maybe having something within that module
or within that program that we use where
I can grade it using voice to text
or have it where it reads me their paper
if they did a paper or a discussion post,
where they have me try and read through everything
when I'm already not feeling good.
So having something like that.
EMMA MCDONNELL: Something in my life
that I feel like I haven't spent as much time hacking on
or thinking on is ordering things when brain fog is hard.
Like even figuring out that brain fog is happening
is sometimes a trick and a half.
But then there are days where I will
be like just stuck in email.
And like cannot figure out what I was going to do next.
And I think that's a really tricky tool to use or tool
to figure out.
But like Kelly and I have brainstormed,
like sometimes like I can backtrack it.
If I can just look at what I was looking at last
or go through like, oh this tweet made me think of that.
That's why I went off in this direction.
So even a way for like with a ton of security and privacy
implications that terrify me as I say this,
like a way to keep track of all of the things
that I've looked at.
Beyond just like links, but like it was that email that's
sent you over there.
Like do you want to figure out what that pattern meant?
I think there's--
I think cognitive accessibility and keeping track of where you
are in a task, with the danger of being very
productivity-focused but also with the reality of having
things I need to do in a day could be--
is an area that I think technology
could play a huge role in, especially when
work is digital.
KELLY MACK: This is Kelly.
I have a couple of examples that come to mind.
One would be something where I can just shift
into different modes of work.
Like a good body day, let's get the stuff done.
And the I was sick all of last night,
got about one hour of sleep.
Hey computer, please like help me cancel all my meetings
or reschedule my meetings.
Help me pick out the tasks that are so
highly important I have to do them or so easy
that I could make some progress on them today.
That's one.
The second, this is like research question for folks.
I would love a way to skim PDFs.
Like since I use a screen reader the thing
that I haven't been able to find an equivalent
for is quickly skimming through papers.
And it makes certain tasks just really--
I dread them because someone could
skim a paper in five minutes and figure out
what was relevant to them.
But I have to parse through the entire thing with a screen
reader and it takes so hecking long.
So that's another thing where I would love technology
to help me when my eyes are not doing good enough to read.
SARAH COPPOLA: I spend most of my time thinking
about teaching.
And so for me, I would like a better system
for teaching hybrid classes or online classes that
doesn't require 20 steps of cognitive overload
that I have to remember to do.
And I think there's a massive opportunity here for one
of these tech companies to come up
with a much better online teaching platform.
Even in classrooms where I do have a hybrid classroom,
it's still so many steps to get everything working.
And most of my classrooms are not,
so I have to drag a camera around me.
It's just too much.
BRIANNA BLASER: I think that's so important to as we think
of all of the reasons that we know folks with disabilities
and other backgrounds need online access to classes
and not just coming in person.
Richard, I see your hand is up.
RICHARD LADNER: Yeah, this is Richard Ladner.
Yeah, that was a great talk and this wonderful panel really.
Wow.
I'm wondering if we're going back
to the sort of theoretical framework.
And I liked your framework.
And we have the medical model and we have this social model
and there's things that are not--
that's too binary.
But when I think of the medical model
these days, when I go to the doctor they don't ask me
how I feel, they ask me if I can tie my shoes.
They ask me if I can--
you go through a physical these days, it's not--
to me it's not looking at my body so much as my activities.
So I wonder if the medical model really
is what we think it is anymore, at least for somebody
that's aging.
The questions that I may ask at the doctor
are more access questions, if you like.
EMMA MCDONNELL: That is so interesting and also
very divergent from my experience as a 26-year-old.
So I wonder if we have a lot to learn from how there's some
exciting work happening in like more progressive,
more like in some ways disability-informed thinking
about aging that doesn't--
in the same way that chronic illness doesn't always
cross into accessibility spaces, that kind of thinking
doesn't always cross in.
Also one of the things that Kelly and I grappled
with in writing this paper is there
are some parts of medical practice,
especially like physical and occupational therapy, that
get closer to looking at the kinds of questions
that we're trying to solve maybe with our HCI accessibility hats
on.
But also like most folks with chronic illnesses
don't get sent to occupational therapy.
So how could that knowledge be something that gets built in?
Maybe that's a more productive way
of a middle ground on engaging medical knowledge
and technical knowledge.
There's some cool work within HCI,
Megan Hofmann has led some cool work on collaboration
with occupational therapy in accessible technology.
And maybe that is a really cool place
to think about chronic illness.
Like Sarah, Kelly, and Litany, I'm
curious if that's ever your experience
with how medical care is provided to you functionally
rather than like medical model-y.
SARAH COPPOLA: This is Sarah, I'm
laughing because what medical care?
I think for so many years, this is
what I wrote my dissertation on, so I'm not
going to get on a soapbox.
But for so many people who are assigned female birth for women
or fem-presenting there is so little useful health
care for you.
And I'm actually sort of baffled as my mother has transitioned
into elder, sort of geriatric care at the Mayo Clinic
how good and comprehensive it is.
And thinking about things like chronic illness with her
that I don't have access to as a over-educated, wealthy person
in the US.
So it's hard to really think about the medical system when
I know that the medical system is so terrible for people who
are chronically ill, and especially people like me
and many of the other panelists here.
[INAUDIBLE]
KELLY MACK: And this is Kelly, I want
to just highlight what some people are saying in the chat
too around how it really depends on the doctor.
And like Sarah was saying, some of your identity
characteristics age, gender, things like that.
Because some doctors, if you can find
one who's willing to view you more holistically,
maybe you do get questions like that.
But the standard health care that I
can get two blocks up the road that's free for me as a student
or very cheap for me as a student, you know,
someone who looks like me who's like 20 something and looks,
quote, unquote, healthy right?
I don't usually get questions about what
capabilities do you have?
When really if you ask, right, there's a lot of limitations
there that I would love your help on.
So it's often me bringing that up myself.
And people having varying responses
to me bringing them up, right?
Some being open, some being less so.
LITANY LINEBERRY: And this is Litany.
So for me, there's a lot of different disparities.
However, I know when I go to like my regular doctor
or if I'm on campus and I get sick
then I know I have a different experience than if I
go to my personal doctor that knows in-depth
my different chronic illnesses.
So if I go, let's say, on campus I may be told,
well, you look fine or you seem fine.
And reality it's like, yeah, no.
So however it's also about me explaining to them,
no, this is how I feel and it's probably
do because of this chronic illness or this chronic illness
and x, y, and z.
So they don't go into depth about the question
unlike my regular doctor back home does.
BRIANNA BLASER: I see a question in the chat from Kimberly.
What about the use of AI, like chat GPT?
Has anyone used an AI to aid with accessibility?
Could it summarize a paper, do some of the checking
of computer code?
KELLY MACK: Yeah, this is Kelly.
It's funny that you mention that, Kimberly,
because that's actually--
I was complaining about this to somebody who's a PhD student
and also understands chronic illness.
And she was like, why don't you toss the paper in chat GPT
and see if it will summarize it for you?
Which was really interesting and I hadn't considered.
And I think that there are maybe places where AI can help,
but you've got to also be thoughtful of what
if it's incorrect and I'm going to be like citing this
in a paper because I think this paper says one thing when it's
actually the edge and summarize it right?
So I think definitely hitting up against some
of those traditional problems too around
what's going to happen if the AI is wrong?
How do we present that confidence?
What about the privacy and how the AI is being run?
Like are there people being underpaid to check
the output of this AI, right, is that something
that I want to be using?
All these are valid questions.
EMMA MCDONNELL: I think chronic illness also brings up
some really interesting questions in the like even
the pre-AI generative tools.
Landscape, in that Kelly and I touched on this a little bit,
like a lot of times AI needs--
well, pretty much all AI and machine-learning models
need some form of labeled training data.
And when there is such a complicated set of calculus
around is this accessible to me?
Like I couldn't just go through it.
I can do this.
I can't do this.
I can do this.
I can't do that.
Because it is so highly contextual.
And there's ways that a tool might
be able to infer that context, but also
how do you make a tool if it is doing something
like reinforcement learning and learning
even like [INAUDIBLE] learning small samples that doesn't
learn that the day that I made a choice that I knew
was going to hurt was within my usual range of capabilities.
And we discussed this in the paper,
but thinking about the TikTok case
might be one where an AI tool might
be a really obvious answer for how do you classify motion
in videos?
But how do you provide a training set
of videos that make someone highly nauseous
and the costs of that algorithm being wrong,
which we know is going to happen,
are really, really high.
So there's some--
I think chronic illness presents some interesting questions
to even more traditional AI landscapes.
LITANY LINEBERRY: For me there are some code
analyzing AI tools out there.
However, you run into a wall where your institution
has the honor code that you may possibly violate that.
So I would like to see maybe coming together
with institutions or in either the collegiate level or K-12
level and with a developer and developing some type of code
reader where it doesn't violate the honor code,
but it can help those that do have chronic illnesses, persons
with chronic illnesses.
BRIANNA BLASER: Katie brought up something
interesting in the chat.
This comes back to the notion of privilege.
I have the option to go to PT, which helps
put all the pieces together.
Even looking at the price of natural readers
many of these tools, including rest time,
aren't available to the vast majority of Americans.
I think that's an interesting point.
Even navigating the health care system
and figuring out how to get insurance to pay for things,
et cetera, as we all know, is quite difficult.
Are there any technologies that of
or use that are made for people with chronic illnesses,
but are hard to use or could be better?
SARAH COPPOLA: So one I've used that I've
abandoned this food tracking.
I have a bunch of food allergies.
And those-- but I'm sure they work for someone,
they don't work for me.
Also apps for celiac like finding food when I travel.
Those are actually useful for me.
And the app-- the thing I was thinking about
though when I saw this question it's
the technologies for diabetes care
have come so far for insulin pumps
that you still require a human in the loop,
but just I think that's a really cool example of technology,
high tech, that is improving people's lives
but requires a person to use.
And there's also really interesting questions
about who owns the data, who is going
through a medical provider, does the person who
is implanted into what control do they have over it?
I think I'd like to see more examples like that
moving forward.
KELLY MACK: This is Kelly.
Sarah, you beat me to it with tracking apps.
There are so many things where doctors are like, oh,
it'd just be great if you could track like your sleep
and your stress and your exercise and what you eat
and how much water it was and if it was a Tuesday or not.
And I'm like, that's way too much information.
I can't.
I can't do that.
That would just be my life, right?
Would just be putting things into the app.
So that's definitely one.
And then I think that there are some areas where tools
could just be better developed.
So for example, compression socks is kind of a weird one.
Where oftentimes compression socks
can be helpful for a lot of folks with chronic illnesses.
I feel like they're oftentimes--
I feel like they come in two styles
they come in hospital, which is like beige and terrifying,
and like looks like you got them in a hospital.
Or like really obnoxious patterns.
And there's no professional middle ground for, oh,
like I need to go to a conference.
And I would like to look reasonably professional.
As well as the fact that compression socks
are perfect technology because some people who need them most,
like folks who have Ehlers-Danlos Syndrome, ADS,
I pronounced it incorrectly.
I apologize.
It can be really hard for them to put the socks on,
but it's really important to have them on, right?
So that technology is great and simple, which is nice.
But also still doesn't quite fit all of these cases.
Yeah.
EMMA MCDONNELL: I have to admit, my first reaction was,
what technology for people with chronic illnesses?
Then thinking about it a little more.
The heart rate tracking on my Apple Watch
is something that I use a lot to be
able to monitor POTS or check which
postural orthostatic tachycardia syndrome, which
is a most obvious tell is heart rate variability.
So sometimes being able to just gut check like,
OK, is that why I feel terrible right now?
Is a really useful tool.
But it's also a tool that is not designed
for the kind of tracking that I am doing.
I can't get that data easily into like this was a big change
or, hey, you're like quite a bit above your baseline right now.
And there might be tools I could hack
from exercise sides of things to do that,
but to design a tool that uses that kind of sensing.
I know a lot of folks do go out and seek
as a way to monitor and manage.
Having an accompanying designed app with that context of use
could be a really cool tool.
LITANY LINEBERRY: Hi.
So this is Litany.
For me I want to piggyback on Emma really quickly.
So I actually had to delete a heart tracking
app because it was doing the wrong thing, I guess.
The readings weren't-- they were different every time within
like the span of like 30 seconds.
So it was like maybe that's not correct.
And so that definitely.
And then also for me personally, I have a pacemaker.
And so I just got it replaced.
But my older pacemaker I found very inconvenient.
I had to download the app to my phone
and give permissions and things like that.
But then afterwards I had to make sure
that my phone was charged if I ever want to send data.
If I was having an issue I would have
to make sure that my Bluetooth was on and location
and Wi-Fi or mobile data on before I could send anything.
So making that a little bit more easier.
And I think they have.
They moved from that to having a machine,
a technology machine that you keep plugged in.
You push a button.
But even then if I go out of town
I would have to take the big thing through security
or I can't be gone more than a week away from it.
So improving that and being continuous and improving
that type of technology.
EMMA MCDONNELL: There's a really interesting space where
we started this paper with we have to think about things
outside of medical context, but there are so
many medical tools that with accessibility lens
might still be a way forward to think about both.
SHERYL BURGSTAHLER: Hi, this is Sheryl Burgstahler.
I just have a question as we get toward the end of this,
is so much uses the medical model or functional limitations
model or so to provide access.
But the universal design part would be
what could answer the question, what
could a department or an institution
do as far as their broad policies and resources they
provide to everyone that would benefit you?
KELLY MACK: Sarah, do you want to start?
I think we have the same one.
SARAH COPPOLA: Well, we only have four minutes left,
so that was dangerous, Kelly, since this is sort of where
my research area has gone.
I think universal design gets us part of the way there,
but it doesn't get us all the way there, right?
And so thinking about variability.
So having asynchronous options for work and for school.
That doesn't work for me.
I teach a 6:00 to 10:00 class, it's really hard for me
to get coverage if I'm ill on that day that I teach.
And if I miss that class, that's a tenth
of instruction per quarter.
The having seamless hybrid so the technology exists,
it works.
I don't have to turn three things on.
It just automatically works.
Or there's a person who is a staff
member whose job and expertise is in making that work.
Those are my big asks.
There's other things that are frustrating like temperature
regulation.
So I can't tell what temperature my office will be.
Normally it's 80 degrees, today it's about 68.
And so I have all this extra clothing,
I have a heating pad for now.
But in the summer we have no air conditioning.
And so my office was hitting 90 degrees most days, which
is unsafe, it's above the threshold
of safety for OSHA standards.
But for people who are chronically ill who really need
to manage their temperature, this
is just a really hostile work environment at baseline
that no one could--
no one who had temperature sensitivity
could work in my office.
And so I think there's just a lot.
And that's before even thinking about COVID
and how ableist it is that we can't have mask mandates.
We can't require masks in our classes,
even when we have someone who's going through cancer
treatment in our class.
I'm still not allowed to request masks
and so or if I were going through cancer treatment,
I'm not allowed to request masks in my own office.
And so I think universal design has gotten us some of the way,
but there's just so much more.
And the ways that it hasn't gotten
us there or the sort of chronic illness type things we've
been talking about today.
OK.
I left you 2 minutes, Kelly.
KELLY MACK: No, you covered it.
Litany, I'm passing it to you.
LITANY LINEBERRY: OK.
Sorry, real quick.
So for me.
I will also say just having the conversation,
but also like for me we just renovated our building.
And to my surprise, they have a hand motion sensor
to open the door.
So now I don't have to pull it open,
especially again due to my chronic illnesses sometimes
I just don't have any or I can't do certain things.
So even pulling open a heavy door really takes it out of me.
So now I just need to wave my hand,
but even that's not perfect.
Sometimes it takes two or three or four tries to get the work,
but it does work.
But also looking at what can be done within the classroom.
And talking to professors, the instructors
about how can we make this easier for you?
And even if they don't know about your disability
or your chronic illness, still maybe do like a survey
of how can this work or how can we improve?
And then go from there.
EMMA MCDONNELL: Yeah.
With an eye on the 2:00 on the dot
and wanting to make it quick, what we Kelly and I actually
do in the paper address this a little bit if people
wanted to read a bit about it.
But one of the things we were thinking about in terms
of universal design is that bringing chronic illness
into the space might make us have
to admit that one space at one time isn't the answer.
And so allowing for multiple spaces, multiple times,
asynchronous access.
There are access conflicts that can occur, especially
when you have multiple chronically
ill people in the same space that aren't always resolvable.
So maybe expanding the axes on which
we can universally design.
BRIANNA BLASER: Excellent.
Thank you so much to all of you for joining us and sharing
your thoughts.
In the chat I just saw some great comments
about temperature regulation, but also
the return to normal and how problematic that is.
I think there are so many topics rich
for conversation here that we could continue talking about.
So I did drop a link to the paper again in the chat.
I also dropped a link to an evaluation form
if you all can take a minute to fill that out, that
would be great.
It benefits our project.
And thank you again for joining us.
KELLY MACK: Thank you.