all right
10 seconds of white paper
okay
thank you so much for being here
today we're going to be talking about
healthcare innovation with people of all
abilities
and this presentation is all about
possibility
so with that in mind we hope that this
sparks some ideas around initiatives
that the different communities that
include disability medical device
manufacturers regulators
cyber research citizen science and
biohackers can collaborate on
and with that we hope you take away an
understanding of disability
universal design and accessibility and
we're going to be dis demystifying
disability and debunking some myths in
order to help you recognize
opportunities to extend innovative
solutions to people of all abilities
and with that i'd like to uh introduce
my co-presenter joel
hi there my name is joel isaac i'm an
accessibility specialist i guide
businesses
in integrating accessibility into their
digital experiences
i've been losing my eyesight for many
years and that's actually led me into
the space from being a full stack
developer
in the past that was a full stack of
developer before that was even a thing
i built uh medical weight loss programs
from the data all the way up to the
interface i also worked on some security
apps for nasa but i worked for about 20
years as a full stack developer
and what's interesting is
my educational background also kind of
goes into healthcare my thesis was on
how to apply a disease state management
to an online environment to lower
healthcare costs
and it really got me into thinking about
how different people
use software and hardware and just have
different experiences based on their
abilities and capabilities
and it really got me fascinated into
accessibility and it it's
brought me here today where my real goal
my life goal has become like how do we
make digital experiences more inclusive
how do we include all all kinds of
people
in a digital experiences so they can all
benefit from the integrations that and
adaptations we're trying to provide
to the public
you for that joel and my name is
piazzaragosa i'm a ux mentor at
springboard but i'm also an innovation
fellow and
i leave customer experience research at
a cyber security agency and i'm really
passionate about inclusive design
and inclusive research efforts and this
is something that i study a lot as well
as practice
and
part of the reason is is because
i think that when we solve for one we
can extend to many
and that is really
about
you know speaking to the possibilities
that that lie in innovation and when we
talk about solving for one
um you know this is really about
understanding you know for instance in
this case who's being excluded
and how we can
design better and research better for
those folks and making sure that they're
included and so i've talked a little bit
about exclusion and typically how this
shows up in our work is we're excluding
seniors
sometimes folks living remote and rural
areas women
immigrants
people with disabilities racialized the
lgbtqia plus two-spirit
groups
as well as low-income low-literacy and
indigenous
and you know i've mentioned inclusive
design and research and if you want to
learn more about this microsoft has a
really great inclusive design toolkit
and as well as what you see here is from
um
ontario government
and so i encourage you to definitely
look more into this
but yeah to me the the group of people
that you described it sounds the phrase
that comes to mind is traditionally is
the ignored and underserved
definitely and i think that this is what
it's all about and when we talk about
solve for one and extend money and
um you know there's just so much that
can be done
when we when we recognize inclu
exclusion early on and do something
about it
and with that let's kind of we've been
talking a lot about disability and to
really just go into this for a second
there's different types of disabilities
physical cognitive auditory and speech
and vision disabilities
and throughout somebody's lifetime
they can have
um one disability they can have many
it can be a range it could be permanent
situational it could be temporary but
just know that
these are just some of the ways and
naming conventions and groupings
then there's also universal design and
this is all about design that's usable
by all people to the greatest extent
possible without the need for adaptation
or specialized design
and this was originally coined by ronald
mace who's an architect and we think
about this not just in
physical spaces but also digital
environments
and then there's accessibility
accessibility is the measure of a
person's ability to perceive understand
and interact with a product service or
environment and accessibility principles
are essentially poor which stands for
perceivable operable understandable and
robust
so for instance today i describe a lot
of what is on the screen
for someone who may have a vision
disability um hopefully this video will
have captions
so that somebody who can't hear will be
able to read and follow along
and so
these are
accessibility um
this is what accessibility is all about
is just ensuring
that
people with disabilities are able to
access the information or
um not just information but the
experience overall
and so with that
i want to share this quote by a
researcher
named lisa izzioni
and this quote goes studies of people
with disabilities show that most don't
view their lives as tragic
she added they figured out how to get
around in a world that wasn't designed
for them and view their lives as good
quality
and that's an important thing to call
out um that especially you know when you
see somebody who has a
visible disability but just also know
that there's also invisible disabilities
we can't assume the worst and we can't
adopt what something that is called
ableist
or ableism which is a bias
and joel maybe you can kind of uh
talk about that more
don't simply but ableism is really
condescending to people who you feel
have less abilities than yourself
in the south they call it paternalism
same type of thing i am the smart strong
person i will help you you poor disabled
uh poor weak person you know it's a
little bit it's a condescending attitude
but let's go back to visa i i totally
agree with that comment as i
lost as i've been losing my eyesight for
a long time
yeah of course it was frustrating losing
my eyesight
but i don't consider myself disabled
i consider the environment i'm in
disabling to me because it doesn't
consider my needs that's that's really
what visa is talking about here um
for me i i still have the same identity
and i have the same goals as when i
could see 20 20. i
you know these days i still
need to work i still need to feed my
children so
i it
eyesight may be an obstacle or a
challenge but it's not my identity
thanks for that joel and i think you
bring up a really important point
especially in the work that you all are
doing
to considerability
identity habits and preferences
and so let's talk a little bit more
about the landscape that exists and so
in the 2020 disability inclusion report
by the world bank
what
was reported was that 1 billion people
or 15 of the world's population
experience some form of a disability
but then there's also this notion that
people with disabilities are not a
solitary market and the centers for
disease control
mentioned that one in five people
for instance in the united states have a
disability
and then there's that four out of five
that care about them that
are their friends and family and part of
the communities that they belong to
and so with that
it's also important to note that in 2020
in the global economics of disability
report
this market influences 13 trillion in
annual disposable income worldwide
now back to lisa is yoni's research so
in the health affairs journal in
february 2021
she along with other researchers
published an essay
entitled physicians perceptions of
people with disability and their health
care
and
just to kind of highlight some of the
issues especially in healthcare
what was
mentioned in this essay was that
physicians associate disability with
worse quality of life
and that's a finding that may contribute
to care disparities for people with
disabilities
um and so just to kind of put an example
that out there that lisa kind of
mentioned um you know somebody who's in
a wheelchair that has breast cancer
uh may not necessarily uh hear from her
or his physician
um
about for instance reconstructive
surgery
um
and so with that in mind
i think that you know
the assumption there is that they don't
care about beauty or physical appearance
and so
once again it goes back to care
disparities
and it also extends to for instance
during the surge of the copic pandemic
in march 2020
the health and human services had to
issue a warning to healthcare providers
that people with disabilities should not
be denied medical care on the basis of
disability or perceived quality of life
absolutely pia so i mean it's it there's
clearly a
systemic problem in
health healthcare and just the medical
field in some ways in general
a lot of times people are considered
like clinical subjects
rather than active people
the reality is there's a lot of
assumptions made by healthcare
professionals
when dealing with somebody
in a patient relationship they treat
them more like something to be moved or
something to be fixed rather than a
person who has needs and has a serious
problem
that they need
to be heard and
considered
but
unfortunately
that doesn't happen but the reality is
everybody in the system the human
everybody needs to be treated with some
dignity and respect and be listened to
especially in a crisis situation that
many of our
our
wonderful medical people
are
always in the middle of
all right thanks for that and with that
let's go ahead and emboss some myths
um absolutely
so what we've been talking about so far
is pretty dry and serious so pia and i
thought we could make this a little bit
of fun by kind of putting this into a
myth busting model so we have three
myths for you today and who better
better to introduce the topic than the
cast of the popular 90s tv show the myth
busters so there they are decked out in
their leather jackets and and
pretty serious looks
taking stock of the situation and ready
for a challenge
and hey look at that guy with the braid
he's gonna be trouble
so let's go on to our myths period
what's our first one
all right myth number one people with
disabilities don't matter because there
is nothing that can be done for them
and so on this next slide what you see
is a vintage pin that says autistic and
proud
and along with the artistic network
international
and then there's a photo of veterans
protesting
and some of the signs that they're
holding say how about a brooklyn va
hospital
another sign is don't make promises
and then another sign says how dare they
take it away joel sure pia so
to me these images invoke a lot of
feelings and it really makes me think
about how
all people want
independence and autonomy they want
their rights they
want to be treated properly
so that pin for instance it shows that
even when somebody has a disability
they're still a person they're proud of
who they are so they're wearing that pin
because
even though they're autistic it's not a
tragedy for them it's something that
they
they appreciate and it creates
their identity
that makes them different it makes them
special and then pictures of the vets
protesting
who doesn't want health care
these are guys that want healthcare in
their neighborhood
they want to they they fought in a war
now
why not
have healthcare to to
help them with problems that
maybe they they gained during warfare
but and we look at this image and we
think
about the disability rights movement but
the disability rights movement
is
is an extension of the civil rights
movement it's it's really all one thing
even though we think of civil rights as
martin luther king and rosa park these
guys that you see protesting for the va
they could have just as easily been in
those sit-ins and and
those bus boycotts
and
we all have these needs and the civil
rights and disability
rights laws they aim at a lot of the
same things equal and fair employment
right to
access the public spaces
ability to free speech
uh just
it is
focused
on rising above discrimination
and with that let's go ahead and
transition into
this collage of different assistive
technologies
take it away joel
sure so
this is a pretty complicated image with
a lot of
interesting technology that you probably
never have seen before so that really
makes us
both think that we probably should
define assistive technology here so
it really is what it sounds like
assistive technology so it's technology
that you use to assist yourself in
achieving a certain goal right so that's
super broad and
in fact that's reflective of this system
technology it could go from very simple
to very complex like for instance a
magnifying glass is like this is the
technology and when you think about it
it may not even have a frame or a handle
around it it may just be a piece of
glass or plastic that when you put
something underneath it it magnifies it
you can see it easier
something more example of something more
complex think of some of these complex
wheelchairs that have motors or think of
some of these types of recognition
software that use ai and machine
learning to say for instance take a
image and describe it to a blind person
and then build up an understanding of
what the elements and the image are over
time and get them get better at being
able to describe surroundings
yeah and i think that an important call
out especially for
medical device manufacturers and
biohackers is to think about
um you know the next version of
assistive technology and also the
devices that are being created what's
the best way to integrate and thinking
about compatibility especially in the
research that i've done in the past
another also consideration is the level
of expertise
some people are very new in in using
assistive technology and some people are
experts
and sometimes there's just still more to
be done and more to be created and that
kind of brings us
to this next image here of somebody here
i want to talk about something just
before we move on here and it's a real
call out to this audience specifically
people who are hackers and innovators
and people who think
beyond the the narrow
scope of things like how do we do this
well the real
thing about assistive technology it is
the result of adaptation it's people
having a need for something this guy in
the wheelchair he's going uphill he
actually needs to adapt by building a
stronger motor or you either are
thinking about how you can adapt to a
situation to fit the
the place better or how can you create
tools that help you adapt better it's
really what has led to innovation in the
past
and we there are a lot of different
technology and devices that we think
about when
we think about the space if you've ever
used a gps in your car
that was really something that was
originally solved for by blind people
you're talking gps is something that was
originally conceived to help a blind
person
be able to navigate through their
environment without being able to
physically see a map and think of how
we're benefited here
where when you're in your car and you're
trying to get some place you've never
been before you don't have the thomas
guide on your lap anymore and you don't
have to worry about having to to quickly
look at the map and then look up before
you get into an accident now you have
this really nice voice
telling giving you the directions to
your next the next turn ahead
without you having to look at anything
you can keep your eyes on the road and
stay stay and there's tons of different
uh examples of assistive technology that
comes from an adaptation that's led to
innovation that's helped all of us
so ip i didn't mean to interrupt but i
thought that was a really important
thing that we needed to say here oh this
is such an important point and i'm glad
you brought that up
and i think that
one of the the things that you're seeing
here is
just experimentation
and also hacking
and this is a group of students at
the massachusetts institute of
technology during their assistive
technology hackathon because there's
there's a lot that exists but there's
still more to be done
and so with that um people with
disabilities don't matter because there
is nothing that can be done for them is
completely false because there's so much
to be done
um and so
moving right along to myth number two
cyber attacks don't affect people with
disabilities and with that i'm gonna
turn it over to joel to explain this
movie reference
so this is a
screenshot from the the movie war games
it's an old movie from the 80s in fact
it's so old that matthew broderick was a
teenager in this movie and he plays the
teenage hacker that accidentally breaks
into the department of defense and
thinks he's actually hacked into a game
company and he's looking at their their
newest games that haven't been released
but inadvertently he starts the nuclear
countdown and the rest of the movie is
him
uh trying to figure out how to stop the
clock and keep the world from exploding
and really that calls out
some of
the things that we have to
consider the consequences of just
focusing on innovation and not thinking
of the big picture things like security
and privacy
and thinking about how
people are diverse and they have
different needs and they have different
ways of achieving a goal one size does
not fit
so when we're thinking about a solution
we should be thinking about the
different fits of people and how
different people with different
abilities would approach something
all right
and with that um
here is a new patient intake form
yeah
yeah this is this reminds me of just a
lot of the security and privacy issues
that we
face when we're
in a health care situation we are super
vulnerable at that point that everybody
is
but
in some cases people with disabilities
may be more vulnerable and more at risk
just due to the nature of how
of their challenges
so think about in terms of cyber
security and identity theft a lot of
these intake forms are asking a lot of
detailed information that's what
really specific personal health
information or personal privacy
information that if it got into the
wrong hands
think about the consequences and one
issue that we've seen
come up is people with disabilities may
be
slower to recover from an identity theft
attack than somebody who doesn't have
any challenges think about
for instance a website that has credit
reporting on it that you can get your
identity back may not be accessible to
everybody and it may not be accessible
to certain specific people with
disabilities
additionally think about other things
like for instance physical uh situations
where social engineering could be used
against the a person with a disability
i'll give you a
scenario say a person in a wheelchair
rolls into their doctor's office
and it's their first time there so they
have to fill in the patient form
and think about all the information on
there i'm sure the the image that ps put
on the screen for that intake form shows
you things like social security so the
person comes into
the office in the wheelchair and
people assume that they can't fill out
the form so they want to help and of
course that's a commendable uh feeling
but they may not need that help and also
even if they do need that help
who's the person that's helping them but
is that person with a disability at risk
from that person who's saying that
they're gonna help oh sir can you give
me your social security security number
oh yeah and what's your mother's main
name those are two pieces of information
that could
steal somebody's identity pretty quickly
and this person in the wheelchair may
just think that they're being helped but
in fact
they're now a victim on a whole new
level
and so with that cyber attacks do affect
people with disabilities and sometimes
the consequences
are even more severe
and with that let's go to myth number
three innovation and emerging
technologies in healthcare and science
will save us all
so here you have nurses standing next to
different types of scales but the one
thing in common with these scales is
that you actually have to step up and
stand up in order to use them
turning it over to joel
yeah so
when i worked on the medical weight loss
application for for the company
they really were focusing on
health weight loss for people who were
morbidly obese so they really had some
great innovative scales that they had
created so one of the requirements of
the scale is that it should be able to
support a thousand pounds
and also this was one of the first
biometric scales that i had seen so a
person standing on the scale could hold
the
handles and then biometric information
would be
set to our databases and we'd be
tracking their water intake and just
different other
additional health care
pieces of information addition to the
weight that would all create a big
picture and this was a commercial uh
application of it so it was also
accessible in the way that there was a
big readout on the scale so if you're
looking at it from far away those
numbers were clear enough that you could
read them and also it made it was
accessible because the data it would
send out we could give that to you in a
list so you could see your charts and
you could see your graphs and
track your progress
we see this now making its way into home
healthcare for instance the scale i use
here at home now is a
low low emission bluetooth enabled so
when i
stand on the scale even though i can't
see the numbers that scale recognizes me
and then it's tracking
me and it's sending that information to
my phone so i get the tracking for my
weight and water intake and just like
the
weight over time like the fat intake
just different things my bmi it's doing
all this stuff but
it is an extension of these scales that
i was seeing 20 years ago there's a lot
of technology like this
and
the next
here is the scale tronics
and in this scale somebody is able to
easily be in a wheelchair in a sitting
position
and be weighed
yeah simply there's a ramp there and
that makes it accessible
all right
and in this image
there is a scientist um a woman who has
a disability a physical disability
um who is fully capable of doing this
work and there's this popular saying by
disability activists nothing about us
without us
yeah joel care to elaborate on that
i love it you need to have a
of the people that you're trying to help
without that you're just assuming things
and without the research you're out of
luck
it's it's just it's just luck that gets
you a successful product you're really
uh at real risk
right
and so with that in debunking myth
number three innovation and emerging
technologies in health care and science
will save us all
well obviously it can't save us all if
it
has anything related to exclusion
um whether that is a specific
demographic or segment
um or if it's the actual technology
itself
and
then there's also who's doing the work
and that is why early on we started with
this question what initiatives can the
disability medical manufacturers
regulators
cyber research citizen science and
biohacker communities collaborate on
and we started with this question and
we're also going to end with it and
hopefully this presentation gave you
more insight
to not
have inspiration but to actually have
the motivation to do something
um and also the provocation and with
that any closing thoughts joel
i think it's a community effort when we
have
thinking about overall community and we
have representation from different
groups like disability uh
medical manufacturers regulators actors
innovators technologists and just the
whole group of people thinking about a
problem together we come up with some
amazing stuff and we urge you
to to
build that community and think about the
people around you and think about
how we can do it together
all right and with that
we are so thankful for
to the biohacking village and of course
we're so excited to be a part of defcon
and please
um keep in touch uh joel what's your
twitter
it's jpi4a11y
a11y is a ackerman acronym for
accessibility
so we appreciate you watching and pia
what's your twitter handle mine is ping
zaragoza so it's p-z-a-r-a-g-o-z-a
and uh enjoy the rest of the conference
take care everyone yeah so
i i said it before we thank you for
watching and we hope you enjoy the rest
of the conference thanks so much take
care be safe
you