Hi, Everyone. Thank you for being here.
It's my great pleasure and privilege to introduce today's speakers.
Liz Ellcessor has been, since 2012,
an Assistant Professor in the Media School at Indiana University, Bloomington,
as well as an affiliate faculty member
in the department of
of Gender and Women's Studies in the
Cultural Studies program.
However
She will be starting a position in the Department of Media Studies
at the University of Virginia
very, very shortly.
Liz works at the intersection of
Cultural Studies, Media Studies
and Disability Studies.
Her research and teaching interests include
Media history, access and literacy as well as
social media, participatory culture,
celebrity and performance of the self.
She is the author of "Restricted Access: media, disability and the politics of participation"
from NYU press, last year,
and co-editor with Bill Kirkpatrick
of "Disability Media Studies",
which is forthcoming from NYU.
Meryl Alper is
an Assistant Professor of Communication Studies at
Northeastern University and a faculty associate here at
The Berkman Klein Center.
Prior to joining the faculty at Northeastern
she earned her Doctorate and Master's degrees
from the Annenburg School of Communication and Journalism at the University of Southern California.
Meryl has worked for over a decade in the Children's media industry.
As an undergraduate at Northwestern she
she was the lab assistant manager in the NSF-funded
Children's Digital Media Center/
Digital Kids Lab.
She interned with the education and research
department at Sesame Workshop
in New York.
Maybe you've heard of it. [Laughter from audience].
Post graduation, she worked in
LA as a research manager for Nick Jr.
conducting formative research for
the Emmy-nominated educational
pre-school television series
Ni Hao, Ki Ian
and the Fresh Beat Band.
Meryl is the author of "Digital Youth with Disabilities",
MIT Press, 2014,
and "Giving Voice:
mobile communication, disability and inequality",
MIT Press, this year.
You may have also seen her writing in The Guardian, The Atlantic
Motherboard and Wired.
Ryan Boudish is a Senior Researcher
at the Berkman Klein Center.
Ryan joined the Berkman Klein Center in 2011
as a Fellow and the Project Director of
Herdict.
In his time here Ryan has contributed policy and legal analysis
to a number of projects and
reports and he's led
several significant initiatives related to
internet censorship, corporate transparency about
government surveillance and multi
stakeholder governance mechanism
I should also say that Meryl and Liz have each
published outstanding books in the past year.
They're in the center of my field, at least, and
while "Giving Voice" by Meryl and
"Restricted Access" by Liz
offer rigorous analyses of lives lived with disabilities
in the 21st century
they're also offering very fundamental reconsiderations
of what it means to study
media and communication and technology
and both books are totally worth your time
and it's a great privilege to have
you all here today.
So, I'm going to hand it over to
Meryl and we'll start today's event.
Awesome.
So Liz and I, we're playing off one another a little bit in
the sense that each of our books
focuses particularly on a
key term. Mine, "voice" and
Liz's, "Access", and
As you might have read in the introduction to
this event on the event site
"Can we talk?", we think, is a really evocative question.
We'll pull in threads from each of our discussions
It pulls upon ability, collective
notions and actions of what it means to participate
So my presentation is Can We Talk?
About Voice.
So in my work
just to pull together what Dylan so graciously
said. I study the social implications
of communication technology with a focus on
the role of digital and mobile media
in the lives of young people
but particularly in the lives of young people with developmental
disabilities.
So that's in particular
autistic youth and
young people with significant communication
impairments
particularly related to something called
childhood apraxia of speech, which is basically
when the brain has difficulty coordinating the
the body parts that are needed.
to talk.
So I think about communication across different
levels
So some of these young people, instead of talking in ways that
you might think of in the traditional sense
use some thing like what Stephen Hawkings
uses, but instead
nowadays instead of having to
necessarily use a device that is bigger, more expensive
breaks, and takes a long time to replace
you could potentially use what I have pictured on the bottom here
is an iPad with this one app called
Proloquo2Go and
you can select text
and icons and it will fill in this top white
bar and you can press the bar and
speech will be output.
The language, the software is a little less sophisticated
than what can be created in
a bigger computer than that but
it can do a lot of work.
So with those unfamiliar, some of these technologies
sometimes they're called voice output communication aids,
speech generating devices,
or augmentative and alternative communication devices.
Which is ironically a mouthful to say.
So I'm just going to say AAC for short.
So because the users of these technologies
don't talk in the traditional sense
and because they use speech generating devices to communicate
the popular press has historically referred to
these types of technologies in a way
in which the users of them get
figured as voiceless.
So the top headline says
it's from the LA Times
It says Electronic Help for the Handicapped
The Voiceless Break Their Silence.
That's a headline about a technology called the Canon Communicator.
So Canon the company you might think of as cameras
produced a device that was
specifically focused on
voice and voice output.
Or, sorry, electronic voice generation.
2012, pretty similar headline.
This is about the iPad giving voice to kids with autism.
But the question I'm really interested in is
What does it mean for technology to give voice
to the voiceless?
And who does that phrase actually help or hurt in the process.
So to answer that question I'm going to discuss three things.
I'm going to talk first about the broader significance of this phrase
"Giving voice to the voiceless"
It's a phrase you might have heard but not necessarily taken a critical angle towards
Why it's an important concept to critique, especially
for people with disabilities.
And third, how thinking differently about voice and
voicelessness in this way, I think, can
more broadly create meaningful change
around technology and ethical considerations
more broadly.
Speaking of ethics...
So before I go much further I
also want to make clear that
I do not personally identify as having a disability.
I am also a white, cis, straight
upper-middle class woman.
So I'm sensitive to the power inherent in interpreting and
sharing the experiences of others
through my analytic lens.
But I also believe that disability is at the heart of the human experience.
I think this picture here gets at that.
So it's a picture taken by Tom Olin
at an ADA march in the early 90s.
People of various racial backgrounds,
people with various physical
and what not disabilities marching under a banner
of Martin Luther King Jr.'s quote, "Injustice anywhere is a threat to justice everywhere,"
So I think that something that is really brought out in this picture
is that despite structures that systematically
isolate and remove people with disabilities from
the center of society, we have to think about
the ways in which how we define the ways it means to be human
and then even within that I would say
because there is the MLK quote here, about the intersections of disability with
other kinds of identities and other potentialities for marginalization as well.
With that being said
What does it mean to give voice to the voiceless?
What does "giving voice" mean?
We might locate its origins biblically.
In the New International version
Proverbs 31:8 says, Speak up for those who cannot speak for themselves
for the rights of all who are destitute.
So not only do you get allusions about voice and speaking but
also a class dimension to this as well.
We might locate, in terms of how this is trace through different
professional groups, different
actors in the public sphere
journalists. So this
a screenshot of the Society of Professional Journalists
their Code of Ethics.
And one line of this is that journalists
a key journalistic duty is to be vigilant
and courageous about holding those with power accountable.
Give voice to the voiceless.
Moving from just sort of actors to also thinking about
other kinds of technologies
we can think about an endless list of things.
whether it's civic media, Twitter
or Open Data, as pictured here, as sort of giving voice.
This is from the Open Data Institute Summit, 2015.
The speaker's talk is "Citizen empowerment: giving a voice to the voiceless"
All too often, though, we consider this background
disability becomes instrumental
for another purpose outside of
just disability focused issues.
It tends to represent something broken for
technology to repair.
So consider, this is Microsoft's Super Bowl commercial
from 2014
So long after Apple had its
big Super Bowl commercial in the 80s
it took until 2014 for Microsoft to have its entry point
and disability is front and center here.
It features NFL player Steve Gleeson who lost
the ability to produce oral speech due to
ALS and the ad proclaims that
the Microsoft Surface Pro, which is pictured here, has
given voice to the voiceless.
And this gets exemplified by Gleeson himself
providing the voiceover for the commercial.
So we can say, and I don't have the time to play the commercial, but encourage you
to take a look at it,
in its entirety,
but we can say then that giving voice to the voiceless means
a couple of things. It means
that voice is used as a metaphor for
for agency and self-representation
That voicelessness is
is imagined as a stable and natural category
so THE voiceless is a thing that we can locate.
and as a sort of immutable thing.
And technology is figured as a direct opportunity, this frictionless opportunity
for expression.
So there is a lot to critique about each of
those kinds of claims
But why do I think it's particularly important to do so?
Particularly at this moment in time.
That's because, based on the ethnographic research
that I conducted, despite these widespread claims
to "give voice to the voiceless"
communication technologies that are intended to
universally empower are still subject to disempowering
structural inequalities,
and especially for people with disabilities.
So in my book "Giving Voice"
I argue that efforts to better include disabled individuals
within society through primarily
technological interventions
when all we do is fetishize and focus on the technology,
for whatever kind of commercial or affective reasons,
we miss the opportunity to take into account all the other ways
in which culture, law, policy
and even the design of these technologies themselves
can marginalize and exclude.
So the book is based on a 16 month ethnographic study that I conducted
of young people who use the iPad and
that Proloquo2Go app. Kids about 3 to 13.
I spent some time observing them getting trained how to use
the technologies at home with speech pathologists
I followed them to different user groups that young people
would use to talk to one another
I went to parent conferences. I also started
to interview different kinds of assistive technology
administrators that were in the local Southern California area
and lots of variations across
better, more resourced and less resourced school districts
larger, and small ones,
to get a sense of what were the other kinds of systems that were shaping the
adoption, use, or potentially
the non-use of these technologies.
So in terms of culture, I'm just going to go through three
examples quickly.
Most speech generating devices are in English.
The ones that are given to kids in US schools.
At home, that is not something that everyone uses to speak.
You automatically can create a disconnect there
between what a home culture is and what a school culture is.
So one specialist I talked to said "There are hundreds of languages
in these schools. One of the kids
I work with, at home, his parents speak Korean.
Any kind of assistive communication system
They wouldn't use it because they don't speak it.
It's a big issue. We are stuck just doing school-based
which is find, that's our job, but
it's hard. It's hard to support them acorss
the board because we can't.
So we could say that here voice is given but then
it's also simultaneously muted.
With respect to law
Assistive technologies are also quite
bluntly, borne of a world
in which half of the people who die at the hands
of police have a disability.
There's a 2016 report from the Ruderman Family Foundation if you want to
take a greater look at that.
But this is something that Danny's dad Peter tapped into
when he talked about a fear that a police officer
might mistake his son reaching for his communication
device as reaching for a weapon.
So he said, "I need him to be able to gesture 'yes'
and 'no'. If a cop's asking
him questions and has got a gun on him, no cop in the world
is going to allow him to
grab a talker."
So this awareness of the limits of
any given piece of technology
in a particular context around justice and injustice
was something that participants were keenly aware of.
That is not necessarily something that is reflected in this broader discourse.
So giving voice can also run the risk of being silenced.
Quite literally, permanently.
Lastly, all of this has to be understood
in a larger policy backdrop
So school district policies, what I found, tend to promote
there financial investments protecting those
more so than promoting students' continued growth.
This is something that Moira's mom Vanessa related to
in her story. So, in Southern California, kids
had been throwing the iPads into pools
this is what the mom was told and because of that the school
decided that they were not going to allow the kids to take
those iPads off campus, even though
they were federally mandated to provide the child
a way in which to communicate with others.
So we're bounding that within the school.
And the ability to challenge that
is completely shaped by one's access to other kinds of
resources: financial aid, legal assistance,
and social capital.
So Vanessa said to me, "The school district
changed their policy and said that iPads only remained
on campus, which was in voilation of
Moira's IEP. I wrote them and
said, 'This is in violation
I'm asking that you give me a window of opportunity
to purchase her a device for the home
One morning I was like
'I don't want to send this iPad to school.' I of course gave it to her
and it didn't come home."
So we could say here also, yes, voice is given,
but then it's taken away.
So how does one particular kind of case get at
some of these larger frameworks with which we understand
technology and ethics.
So my overall takeaway is that we should keep
voices attached to people.
So I'm drawing here on an historian, Katherine Oft,
who's at the Smithsonian
She's written an introduction to this book, this is a picture of the cover,
It's called "Artificial Parts, Practical Lives
Modern Histories of Prosthetics"
and she writes, "Focus on the materiality
of the body, not only or exclusively
its abstract and metaphoric meanings.
Keeping protheses attached to people limits the kinds of
claims and interpretive leaps a writer can make."
So I think, as well, staying very close to the body
staying very close to the material and embodied aspects of
voice is the only way for us to understand
the uses and abuses of voice
in relation to other kinds of inequalities and injustices.
I will just go through two applications of this
in terms of what I
use with my students to talk about politics in two ways.
Politics in sort of 'Big P Politics', so electoral politics
And 'little p politics'
which is power and its various manifestations.
And those two things are related to one another but its a simple
way to kind of split it up.
Trigger warning, there is a picture of Donald Trump
on the next slide. I'm just letting you know. [Audience laughs].
So with Big P Politics we need to keep voices attached to citizens
in our democracy. Despite Donald Trump's
demagogic insistence that he is literally our voice.
This is New York Times, July 22, 2016.
Front page of newyorktimes.com
This is right after Trump's acceptance speech
at the INC Convention
"Trump Pledges..." Headline, it's a picture of Trump smiling and a very large close up version of him
smiling in the background projected on the screen, and it says
"Trump Pledges Order and Says: I Am Your Voice"
Let's think about that in relation to ways in which people with disabilities
potentially have some quibbles with that.
So this is a screenshot from CNN's projection of
at the DNC, a disabled self-advocate
Anastasia Somoza
directly responding to Trump's call saying Donald Trump
doesn't hear me
he doesn't see me and he definitely doesn't speak for me.
So this pulling through of ways in which voice
is getting used and abused in particular ways
it is not something that people with disabilities are...
They are the ones that we need to look to
and draw upon sort of histories of resources
in which to grapple with
the uses of language
in ways that more often exclude than include.
On a technological aspect
nowadays there's a lot of interest in voice activated technologies
so Siri and Alexa
and in some ways those can be really accessible.
Those can add, if you have motor limitations, other ways
to access.
But we have to think about what kinds of voices get picked up
This is just a headline that says "Voice is the next big platform..."
But then here's another headline from Scientific american, "Why Siri won't listen
to millions of people with disaiblities.
There are particular ways in which voices are recognized or are not recognized.
Let alone just the kinds of voices that can be produced
by a given piece of technology
So ideas about the normal here
and what it means to have a voice
or more critical considerations.
So to wrap up, technologies that
give a voice to the voiceless
can also reproduce structural inequalities
Having a voice and being heard
are not necessarily the same things at all.
And they're also not just about technology.
But also about social, cultural and economic resources.
And having access to which is unevenly distributed.
My book centers the iPad but it's interesting because
I am really interested in what some people might call
an edge case or
you know, a sort of outside case, but
I really believe there's something to think about marginalization and
participation that
is really actually super central to
to what we're all trying to get at.
in terms of understanding what it means to participate.
So we need to keep voices materially attached to people
in how we build our technology or else
the risk is tantamount to dismantling...
Or if we can say the structure of democracy has been
stable to begin with...
Also an open question.
But at stake is not only which voices get to
speak but who's thought to have a voice to speak with
in the first place.
And that's my talk. [Applause from the audience].
Alright, so thank you for having me here today.
I am happy to have a chance to talk about this work
in conjunction with Meryl's work, because we've been
batting around some of the same ideas
regarding access, voice, participation
and technology and disability.
I've been framing my work as, essentially, cultural studies of technology.
I'm attempting to understand how technologies
reflect and reproduce particular dynamics of
power and how users of technologies
can push back upon those constructions.
and challenge these sort of received ways in which
technologies are developed along certain assumptions.
I'm going to be reading from my phone because I get lost on a large piece of paper.
To start off here we have some images reflecting a sort of pervasive
utopianism in talking about the internet,
World Wide Web, and related technologies.
At the top right is an image from MCI's "Anthem Commercial"
This young person appears speaking in American Sign Language
right before text that reads "there are no infirmities."
The TIME 2006 "Person of the Year" was You
with a big reflective cover.
And then this bottom photo is a screenshot from a Yahoo!
advertisement from 2009 called "It's You"
prioritizing this kind of individual empowerment and excitement around
new technologies.
At various points these technologies have been understood as
democratizing, globalizing, something that can
eradicate racial, gender and disability difference
and something that can open economic and social opportunities.
From the hype of cyberspace to the celebrations of Web 2.0
we see that stories of technology are often stories of
endless possibility.
In "Restricted Access" I am attempting to intervene in some of these celebrations.
by investigating digital media accessibility
the processes by which digital media is made useable
by people with disabilities
and arguing for the necessity of conceptualizing
access in a way that will be more
variable, and open opportunity in new ways.
So after all, I argue if digital media only open up these opportunities
to people who are already relatively privileged
in terms of their ability to access technology
then their progressive potential remains unrealized.
If not transformed into a means of upholding those varying inequalities.
Now what is media accessibility, web accessibility?
This is something I often illustrate with this slide
which is just a screen shot of the homepage of The New York Times
as run through the Web Accessibility and Minds
Online Accessibility Checker.
This is an automatic software tool that will check the HTML
and associated code of a web page
and flag with little red or yellow icons
where there might be a problem.
So in this case the page is being flagged for
not describing the image that reads "New York Times"
for not describing the small images
and for having some incorrect form usage.
Now, accessibility is a fascinating case because
it is a very granular process.
Essentially web content accessibility comes out of
non-governmental policy sources
such as the World Wide Web Consortium
It has also been taken up in various legal contexts
so there are laws in the United States that require accessibility in some contexts
and there are arguments that the ADA requires web accessibility in
many contexts.
However, these policies are written in such a way that
to facilitate the use of consumer technology
with the kinds of adaptive and assistive technologies that Meryl gestured towards.
Things like screen readers, alternative input devices like
tongue typers, joysticks,
these technologies are often key
in allowing people with disabilities to use technology
and accessibility ensures that software will work with those technologies.
However, accessibility, generally, has to be implemented
by individual companies, developers, website operators
and is therefore a highly distributed phenomenon.
There is no automatic way of understanding where this happens.
Thus a lot of my research has involved tracking digital media accessibility through
the policy makers, people working with the World Wide Web Consortium
people working in government, in academic contexts,
as well as with developers, consultants,
sometimes marketing departments are in charge of accessibility,
internal standards, a lot of major corporations have their own
accessibility standards that
are different to what we see in the public sphere
and so in these terms accessibility may be understood in highly bureaucratic and
technical. It creates a kind of base line
from which there is a possibility that people with disabilities may then access
and use digital media.
In thinking about accessibility, however, it is important to think about the terminology.
Because "accessibility", like "access", is an
often-used term that is not always attached to
these kinds of specialized meanings.
I often see accessibility invoked to refer to new possibilities.
The graphical user interface made desktop computing more accessible
to a large number of people.
Even as it very much shut down access for people who are visually impaired.
Right, so we access deployed in various contexts.
Additionally, access to media and information technologies has been a
addressed in a wide range of academic literatures.
From digital divides work to work on public broadcasting,
community television, media literacy
and media policy work.
But in all of these areas
access is dominantly figured as something which is "had".
Do you "have" access?
A sort of unitary and universally desired endpoint.
Do you have access? It is good to have access.
And in addition to this sort of positive and linear framing
the concept of access is often deployed in such a way
as to stand in for "availability"
(you have access to the telephone lines as they connect to your house, even if you don't have a telephone),
"affordability" (this is a subsidized service so therefore in some sort of way therefore
it is more accessible), or "consumer choice"
(you have access to 590 cable channels
whether you want them all or not).
So "access" is a flexible term.
But when we center disability and accessibility and their specialized senses, the gaps in some of these
literatures and usages emerge.
In fact, it seems that access is inherently variable.
It's dependant upon bodies, contacts and a host of other factors.
When we say "check Facebook", we are potentially engaged in a wide
range of technological and social practices that vary
from person to person.
As argued by Canadian disabilities scholar Tanya Titchkosky
quote, "every single instance of life can be regarded as tied to access. To do anything is
to have some form of access." Thus, rather than think of access as
a binary, or linear progression, disability studies
encourages us to conceive of it as a continually relationally
produced means of engaging with the world.
So we don't "have" access, we are "doing" access.
Now in "Restricted Access" I use this a sort of jumping off point for thinking about
how then can we study access as an infinitely variable and complicated phenomenon.
Right? This is starting to sound impossible, if every
construction of access is different.
And thus I've been using the metaphor of a kind of "Access Kit"
illustrated here with a sewing kit with
a pair of scissors, some safety pins, needles, a thimble, other things you use for sewing... I'm not a sewer.
However, I use this metaphor because I like the idea of a kit in that you can use it all together to do what it's intended for.
You can use this to sew.
Or you can take pieces and parts and use them differently.
You might cut up something in your kitchen, you might use the safety pin
to make a punk t-shirt or
signal your safety in a post Donald Trump world.
You may recombine these in different ways.
And thus in sort of figuring access kit, what are some sort of categories of questions?
What are some sort of ways that we can dig into access
that will allow us to look through some different lenses at how that access is being created?
I'm not going to go into detail here, except to say that I sort of loosely grouped these into categories of
regulation, use, form, content and experience.
Which I can talk about later.
And together they encourage us to think about access as a relational phenomenon.
Drawing attention to what a cultural studies perspective might call
the articulations of bodies, technologies, institutions, geographies and social identities.
So access is not one thing, but many. Not an end point, but also not a beginning.
Nico Carpentier has referred to access as a precondition for participation
before we can participate we must access
but through the study of digital media accessibility for disability
it's become evident to me that the production of access is an on-going part of participation in a digitally mediated society.
Now one of my favourite examples in the book is the case of Tumblr.
As some of you probably know, Tumblr is a multimedia microblogging platform
that is characterized by the sharing or reblogging of posts across the network,
the formation of interest groups, and a lesser emphasis on individual identity display.
Than many social networks.
It is, however, populated by user generated content and thus not obviously
bound by the legal and technical requirements faced in government, educational or ecommerce spaces.
Perhaps as a result, Tumblr is formally inaccessible.
It is difficult to add alternate text to images, even if you wanted to and knew how.
It features infinite scroll, which can be a challenge for many assistive technologies,
and it uses very limited mark up features to indicate importance.
Additionally, the content is highly variable and often animated.
Adding additional challenges from an accessibility perspective.
So from a sort of top down perspective, the inaccessibility of Tumblr seems like a problem.
However, in my work I've tried to couple the institutional perspective
with a more on the ground user perspective.
I did roughly 25 interviews with disabled users about
how they use these technologies and why and what was frustrating.
In these interviews I've got on the one hand, people telling me
that they contact Tumblr and talked about the accessibility policies
and were just totally rebuffed.
Tumblr was not interested in talking to them, did not change anything.
However, they also pointed towards group pages such as Accessibility Fail and F Yeah Accessibility
as other places they were in fact finding community and using this platform.
In some of these cases users were adopting and adapting Tumblr,
sharing experiences of micro aggressions, sharing accessibility knowledge,
teaching each other work arounds by which to make a site more accessible.
Furthermore, this kind of grassroots accessibility
revealed some different meanings of access.
and the values associated with it.
While accessibility is often through of as a matter of law, policy, or technology
or the provision of services and a kind of charity model,
many users were much more likely to talk about it in terms of affective and cultural dimensions.
Many prioritized feeling welcomed rather than merely accommodated, or being included as
members of a community rather than as afterthoughts.
Or having their non-technical needs met.
For instance, many disable Tumblr users praised the site because its large social justice community
meant that trigger warnings were commonly used.
Trigger warnings, or as we saw with Donal Trump, are a brief indication of when and how
content might be upsetting for someone with a particular kind of trauma
and they're well beyond the scope of technological accessibility policy. However, as one
interviewee told me, "Trigger warnings make a site accessible to me."
Indicating respect for the emotional and social needs that can often accompany disability.
Building out of such examples, I end "Restricted Access" by talking about cultural accessibility
as a means of moving towards a more accessible and just future.
This moves beyond sort of technocentric notions of accessibility or
accommodation and aims to highlight the interrelationships among technological
and economic access, cultural representation and production, and access to community in the public sphere.
Not simply universal design, cultural accessibility prioritizes the on-going
perspectives and visibility of people with disabilities and it may best be achieved through
sort of participatory collaborations between users, policy makers, industries and others.
I've illustrated this concluding point with a screen shot of actress Teal Shearer, who created a web
series called "My Gimpy Life" which she funded through Kickstarter.
So already we're seeing a sort of host of contemporary digital media technologies brought to bear
and in this case Shearer also prioritized disability, community and access both on screen and off.
The web series had an onscreen credit to the person who produced the close captioning
The Kickstarter page developed over time into more of a community space
than a fundraising space
and we see a range of relationships and connections forming that potentially
enable the formation of community and the movement into a larger civic and public sphere.
from inclusive cultural spaces.
Ultimately then, I would argue that access is not simply a prerequisite to participation,
access and participation depend upon one another.
Just as access enables participation
so does increased participation by diverse people make possible the expansion of access.
And I will wrap it up there so that we have some time. [Audience applause].
Okay I'm going to start with one question for the three of you and then we can open
it up as quickly as possible to Q&A.
So it strikes me that constantly all of our work is constantly playing
catch up with lived experience and Ryan I'm thinking of your work with Herdict
is in some way, is always trying to close that gap
between lived experiences of blockages or clogs or censorship online
and the point at which there is greater public awareness
about those blockages.
And scholarship by design is sort of laggy because of the time it takes
to dwell on things and the time it takes to publish things
so I wonder how each of you think
about lagginess with regard to lived experience in
each of your projects.
Maybe we can start with Ryan.
So I'll just first preface my response by saying
as Dylan mentioned in my introduction I spend my
work days thinking about access to technology
and who controls these sort of elements of the web
and the internet and our technologies
but in my personal life as someone who wears hearing aids I think a lot
sort of in the very specific use case of how that
technology enables and limits me personally
in different ways.
And so I found the
discussion from Liz and Meryl really interesting
and important.
So on this question of lagginess, you know, one of the
things that really jumps out at
me and I think picks up on something that
Meryl was saying, was that this
question of, you know,
technology reproducing
structural inequalities
and something that I think is on that point is
interesting to me is that
I see a lot of
convergence going on in technologies
that, as Meryl's example showed,
that people can use iPads which are
consumer technologies to do things that
earlier might have required
going through a medical specialist or
getting very expensive medical technologies
and in the hearing aid market there is a lot of
movement now to allow companies
to sell things that aren't quite hearing aids
but do essentially everything that
a hearing aid could do
and there is a lot of pros and cons
to that approach, you know, there's the potential
that it could lower the cost that a lot of people that don't get hearing aids
could suddenly get hearing aids
but no longer are they having it fine tuned
by a medical professional
and all of that, and so as you converge
sort of mainstream technology and
technology that helps people with disabilities
in some ways I think that
you can turn Meryl's question into
or prompt around
and say
in what ways is all technology reinforcing societal and structural
inequalities and, you know, to Sarah Hendren has
talked about how all technology is
assistive technology. You know, we're not naturally born with
the ability to get our emails on our wrists and
you know, and yet, technology enables us to do that.
So in what ways is technology that all of us are using in assistive ways
reproducing things that maybe we should be taking a closer look at?
One example that comes to mind is
how autonomous vehicles
are certainly something, you know, to talk about access,
can potentially allow people who
either physically can't drive or they're too old to drive
allows them to have mobility
as ride sharing services
will start using it there is the potential to open up access for lots of people
and yet ride sharing and autonomous vehicles often
rely very heavily on
mapping and so parts of the world are simply not mapped.
And those places don't get access.
And so there is an example of where
technology, taken out of the disability context,
but something that you could characterize
at a very basic level
as accessibility technology
is itself going to potentially reproduce the structural inequalities
that places like the favelas in Brazil
are very heavily populated but are not mapped
will not have access to these technologies.
I'm not quite sure that answers your question about lagginess
But there are just some bigger questions to me about technology in general
and how that's reproducing these inequalities
and I think it does raise these questions of
you know, from a lagginess perspective
that we have to sort of think of these things
in their broader context and not
just in a disability context.
I'll just say something very briefly because then I want to make sure we have time for questions
but just talking about lag
and delay and whether that's a negative or a positive thing
or an inevitable thing
but I immediately thought of when you brought up
you know the relational, or the sort of act of access, it is a process
and not just a product.
Thinking about with speech generating devices
that it can take a while to create a message
for it to then be output for somebody to say.
The fluidity with which one might be able to potentially
depending on what kind of motor
impairment they might or might not have
the patience that is required for a conversation partner
even if you've got a technology that works well, it's top of the line, it's fully charged,
that's a whole other thing
can't talk if the thing doesn't have any juice.
that the patience that is required of somebody else to follow a pace of conversation
that might not be that one that they themselves enact or are use to having with another person.
So that process, that patience, and that is something that is learned and something that
somebody who doesn't have a speech disability would have to be able to become
better at equiped at
So think about the kinds of personal, social and cultural
equipment that is needed for participation
and that gets sort of like added to the
list here just thinking about temporality in that way.
It's just a small comment.
I'm from Columbia.
We don't have that many resources so we have to come up with creative solutions.
The main problem with these kinds of issues is the economies of scale.
As the population is not big, the market is not providing solutions for them.
So for example in the case of deaf people...
we create this relay center
with sign language.
So a person who is deaf could connect to an app
and this remote person can translate from sign language
so the deaf person can present an exam or
have a consultation with a doctor or rely any kind of communication
so this is one example of a solution to economies of scale.
The other is we buy a country license for a screen reader.
So one license is, I think, $1000 per person
per year
but if you buy a country license where it's less than $1 per person, per year
or per computer, per year
We buy thousands of thousands of licenses so we can
install a license in every internet cafe
in every school, for example.
People are not paying because it's so cheap
to charge for, so for example, the school pays a little
and we gather all this money and buy a country license,
which is tremendously cheaper than paying individually.
I hadn't heard about country licenses. That's really fascinating, I want to know more.
But in terms of scale, we may think about
the sort of things that Ryan brought up with mainstreaming as being one
way in which mainstream technologies are taking on assistive functions
which enables a different kind of scaling
When we are talking about assistive technologies
that are developed as such
they're often very expensive because there's a small market and a lot of research that goes into them.
When those can be deployed in consumer devices
some of those costs go down but as I think
Ryan indicated sometimes oversight goes down as well.
You don't have a medical professional adjusting the hearing aids
I've been doing some research on emergency lately
and you don't really have very good connections to 911 when
you're relying on an app to dial it for you.
So there are ways in which that is changing.
I just had a question about the differences between
adults and kids
and particularly I think that there is often
you know, talking about voice and voiceless, you know, many times
kids are voiceless
either simply because they
aren't at the emotional or intellectual
place where they can talk about what is going on
or legally their parents speak for them
and I know from my personal experience when I was
5 or 6 the last thing I wanted to be doing was wearing hearing aids
and I didn't want people to ask me about them and
if it was my choice I would have just taken them out
but luckily it wasn't my choice
And so I was wondering if you could talk about
some of the differences that you guys have seen
in particular, you quoted some parents talking,
about their experiences
I'd be interested to hear about how these issues of voice and voiceless
and access are different or different challenges emerge
when you're dealing with adults versus kids
I've worked primarily with adults
and in part that's because when we are looking at
disability spaces there is a lot of attention often to K-12
education and to particularly what can be done to help children
and there is often a drop off of when those children become adults.
So by looking at online spaces where people with disabilities
were engaging with one another and creating disability culture I think
I get an interesting sort of perspective on what happens after that.
Right in that sort of less structured space but obviously for research on kids
I think the kid focus is particularly just from my expertise and background more than anything
Even then, thirteen tends to become my cutoff.
Fourteen in the US, you're meant to at least federally, have a mandate
mandate to talk about transition to adulthood
and that's where I sort of stop, even though
you can be like 30 and really be into Elmo
and in my first book I talk in "Digital Youth with Disabilities" talk about
age appropriateness and the fluidity with which radical spaces can
potentially be created outside of related to interested or related to
different cultural spaces like theater performances that
have sensory inclusivity, sort of mixed aged, mixed abilities of all different sort of kinds
and I think that with the book a lot of the research
in terms of the kids
there are the parents that are quoted
In the book there are a lot of descriptors of behaviour
and of interactions with kids and other individuals
I did not have the skill to interview some of the
kids in terms of their capacity to use
...the whole point was that they didn't have reliable access to communication
and so the challenges of then doing that work outside of triangulating different sort of
behaviours and different kinds of expressions, vocalizations or excitements
in kinds of spaces. I would say for my next book project
which is focused on the experiences of autistic youth
growing up in the digital age
and different kinds of ways that communication happens
I'm grappling with that right now in terms of in interviews that I'm doing
directly with kids, the ways that I talk with them about their media practices
Again, some of that is oral and some of that is not
and so part of that is sometimes the challenge of
presenting fieldwork to an audience
and the legibility of that
as opposed to sort of just having
a video or another kind of recording
so that kind of gets at our methods and
the ways in which we
make our research visible
and the ways in which certain kinds of visibilities
can unintentionally privilege
or reflect certain ways in which the research was or was not conducted.
Hi, I have one comment about giving voice to the voiceless.
I really liked the point about how voiceless
is seen as a means for agency and self presentation.
I was just thinking about if you change the headline to something different
instead of giving voice to the voiceless
to something like "Listen to the Unlistenable"
it'll be a totally different focus on
instead of on the person who needs to be given a voice
it will be on behalf of us to train our listening capacity.
So I don't know whether you've thought about that.
Yeah, so listening and speaking
and the dynamics between those things are something that I talk about more in the book
and that gets a little bit to... There's a phrase I really, really love...
A media justice scholar Tanya Draya talks about. The partial promise of voice
So voice's incompletion, the partiality of it,
to fully say that we have any kind of grasp or pin-downableness of it
because that understanding of respect
of a message being acted on and a promise being kept
and that's partly in larger public sphere discussions
but I think that point about listening
whether one is able to be listened to or not...
again that's a... Begin to think about that in a biological
individual level, a social level, a political... You know... what the mechanisms are for feedback
But also some of that can sort of reinforce who's in power in the first place.
And in what ways can that still enforce an us/them
An essentializing idea of having and not having of giving and not having.
Hi, I have a comment then a question.
I had the great pleasure and I will say some humility,
about ten years ago
I was teaching at Northeastern for adults
and one of my students was a 74 year old blind man
who lost his sight at 32
and I learned the day in the life of
someone who is disable and I had to rearrange my entire
how I was going to structure an exam
because we were in a computer class room and he had to go in a special room
and if they didn't have the jaws then I would have to work
with the Northeastern disability office to have someone come and have a reader
read the exam to him and I learned something at the MA disability
I just say, "oh just go to the bookstore and go and get volume 6 of the book for the class"
and the one they had for the brail was version 3.
Things that we just take for granted.
It's just very humbling
Another time I was at an event where
there was a company who had an event
at the faculty club where they were talking and saying that many
times when they have events here
or classes they have closed captioning
and they said that many times foreign students,
to help them learn English, are using it.
So that's like the number one reason in addition to disability.
So my question here is...
We're in an area where we have so many start-ups
and just like until recently, cyber security and writing secure code is
an after thought... disability for many places is like, "yeah, yeah, whatever..."
Is there anything that can be done to teach the CS students
that are coming to our courses, at MIT, here at Harvard, the people who
before they start their careers, to incorporate it into
design so it's not... So let's take it and make it part of
how you learn how to create
So you will not have these credible disparities
in accessibility.
One thing I would say is to
read histories of people with disabilities as actors in the
history of the development of computing.
So the idea that it is more like you're not adding on
disability... Like, the recovery of people with disabilities in computing history or engineering history
is really central to that idea of not developing
a sort of charity model
of disability pedagogy in a field like CS.
I'll just add to that.
I've done some work on how web accessibility
was explicitly an afterthought in teaching web development
for many, many years.
In the sense that it would be the last chapter of the book
Once you've learnt to do everything else, maybe you'll look at this
but you probably won't
And that's something that's borne out of a lot of computer studies curriculum.
They don't have courses on accessibility
and basic lessons don't incorporate it as something that you do as part of a process.
The International Association of Accessibility Professionals is a
young organization maybe four or five years old
that's explicitly attempting to address that by making some sort of
best practices for CS education and
offering some certifications for people who have
actual training in accessibility to use once they go out into the job market.
Then of course there is a whole world of universal design
and design for disability and design literatures
focused on how to
incorporate diverse users at an early stage.
I was just going to say that I am somewhat optimistic
in this sense right now
because I think that when you look at
things like wearable technologies and
there's so much more
focus right now on the mainstream
and I think this gets back to this kind of convergence point
there is so much more focus right now on
human-machine interaction and artificial intelligence
and a lot of the technologies
that are necessary to make
wearables better
to make augmented reality better, to make autonomous vehicles better
the improvements that have been made
over the last several years in computer vision technology
all of those things will help on this lagginess question
I think it's that as more technology and these start-ups are thinking more about
how machines interact with the physical world
they're solving some of these problems
that maybe have traditionally been
have been the after thought problems
and they're not approaching it in the mindset of
how do we solve problems with people with disabilities
but I think that the applications
are getting closer and closer
so that it's not such a leap to figure out
oh, we designed this thing, now we have to
figure out how to apply it in a whole new context
but it's actually like, oh, we now have something
that can identify what's going on in this room
because we need it for our artificial intelligence technology
and that makes it super easy to design something for someone
with a visual impairment. So, I'm optimistic.
So just a quick comment on that last bit, there is an
industrial thing called Teach Access
it's a consortium of a number of the big companies
are trying to put together curricula to
distribute throughout a bunch of universities for specifically integrating
it into the CS curriculum.
There's a lot of trouble there because a lot of the
industries are trying to hire people and
nobody knows anything about it
and so this is actually a pull from industry to try and
be able to key that up a little bit.
So it's something to look at.
I just had a question. A lot of the
regulatory issues and the policy issues in
accessibility have to do with
things around either livelihoods or access to government services
these things that are really very instrumental in getting things done in your life.
I'm wonder if you could speak a little bit to
issues around entertainment or just sociality of just interacting
because as much more of our lives become mediated the access of these things become much more critical
to just our lives.
And I don't see a lot of discussion about that in a lot of disability discussions.
I think the place you see the most discussion of that sort of thing is
in captioning.
Particularly, in the past several years as Netflix captioned its content
both the activism around that and then the
21st Century Video and Communication Act
took some steps towards prioritizing that kind of access
But I think it's a really intesting question to think
about content and what we're gaining access to
and making sure that access to video games and access to pornography
are still kinds of access, and people with disabilities are not less entitled
to things that we think are morally dubious than are other people.
So there's certainly some tension there, right? Because government doesn't want to get into
that if they can avoid it. But I'm encouraged because
I see that that's also happening in informal ways.
Major league baseball did what's called a
structured negotiation where instead of a lawsuit
they worked with disabled community memebers
to make websites and streaming baseball games more accessible.
So that's something where the mandate for MLB to be accessible is not really there
but through some processes of introductions and collaboration
you can actually get to places where that content is being
addressed but it's very much not from the W3C.
There's a chapter in the book that's about
centering on... The question is like 'what is an iPad for?'
There were these real tensions around whether an iPad was for that app exclusively
or whether it was also for all of the other things
that any of the other things that a person might use it for
and a lot of things that were related to
issues around taste, related to issues of ownership,
the idea of whether you had multiple different pieces of those hardware
to delineate and make distinctions between what each of those things are for
but for me the real lightening strike in that was I was doing an observation
and the speech pathologist I was with had very negative things to say about YouTube
even though it was clearly something that the kid enjoyed
that motivated them to use this app in the first place to communicate
but there were lots of values about kids and their iPads and their YouTubes and are shut down
and the ways that that particularly extra marginalized
families who maybe didn't have access to, or the ability to mobilize resources
I want to also phrase it as that way
around English language, mobilize resources around community members
who had other kinds of access to other kinds of resources
social capital, the cultural capital to push bak against that person
in any way
Especially because an iPad is designed to be a consumption technology not necessarily for creation
and somewhat for circulation
just thinking about the people wanting to take advantage of
all of these things that can be done but some of the professional
push backs around expertise and it's a mainstream technology but
it entered the home through the teachings of somebody with a professionalization
and certain sort of things attached to that.
More of that in the book.
Okay thanks every, again there are books. I'll just say there are books for purchase at the back of the room
and thank you so much for coming out. Liz and Meryl and Ryan will be here.
A round of applause for our guests. [Audience applauses].