Can We Talk?: An Open Forum on Disability, Technology, and Inclusion

Can we talk? The question (a favorite prompt of the late comedian Joan Rivers) evokes a feeling of being intimately and sometimes uncomfortably open, frank, and honest, both with others and ourselves. This event, a conversation between Prof. Elizabeth Ellcessor (Indiana University) and Prof. Meryl Alper (Northeastern University, Berkman Klein Center​), points the question at the topic of disability, technology, and inclusion in public and private, and in digital and digitally-mediated spaces. Ryan Budish (Berkman Klein Center) and Dylan Mulvin (Microsoft Research) will serve as discussants.

Can we talk?, with respect to different degrees of potential access (in its social, cultural, and political forms) that new media constrains and affords for individuals with disabilities. Can we talk?, with respect to who does and does not take part in the ongoing research, development, and critique of accessible communication technologies. Can we talk?, with respect to whether or not talking, or its corollary "voice," is an adequate metaphor for conversation, participation, and agency?

Alper and ​Ellcessor and draw upon their recent respective books, ​Giving Voice: Mobile Communication, Disability, and Inequality (MIT Press, 2017) and ​Restricted Access: Media, Disability, and the Politics of Participation (NYU Press, 2016).

For more info on this event visit:
https://cyber.harvard.edu/events/2017/luncheon/05/Canwetalk

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].