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

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    Hi, Everyone. Thank you for being here.
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    It's my great pleasure and privilege to introduce today's speakers.
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    Liz Ellcessor has been, since 2012,
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    an Assistant Professor in the Media School at Indiana University, Bloomington,
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    as well as an affiliate faculty member
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    in the department of
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    of Gender and Women's Studies in the
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    Cultural Studies program.
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    However
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    She will be starting a position in the Department of Media Studies
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    at the University of Virginia
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    very, very shortly.
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    Liz works at the intersection of
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    Cultural Studies, Media Studies
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    and Disability Studies.
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    Her research and teaching interests include
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    Media history, access and literacy as well as
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    social media, participatory culture,
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    celebrity and performance of the self.
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    She is the author of "Restricted Access: media, disability and the politics of participation"
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    from NYU press, last year,
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    and co-editor with Bill Kirkpatrick
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    of "Disability Media Studies",
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    which is forthcoming from NYU.
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    Meryl Alper is
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    an Assistant Professor of Communication Studies at
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    Northeastern University and a faculty associate here at
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    The Berkman Klein Center.
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    Prior to joining the faculty at Northeastern
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    she earned her Doctorate and Master's degrees
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    from the Annenburg School of Communication and Journalism at the University of Southern California.
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    Meryl has worked for over a decade in the Children's media industry.
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    As an undergraduate at Northwestern she
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    she was the lab assistant manager in the NSF-funded
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    Children's Digital Media Center/
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    Digital Kids Lab.
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    She interned with the education and research
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    department at Sesame Workshop
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    in New York.
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    Maybe you've heard of it. [Laughter from audience].
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    Post graduation, she worked in
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    LA as a research manager for Nick Jr.
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    conducting formative research for
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    the Emmy-nominated educational
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    pre-school television series
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    Ni Hao, Ki Ian
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    and the Fresh Beat Band.
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    Meryl is the author of "Digital Youth with Disabilities",
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    MIT Press, 2014,
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    and "Giving Voice:
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    mobile communication, disability and inequality",
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    MIT Press, this year.
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    You may have also seen her writing in The Guardian, The Atlantic
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    Motherboard and Wired.
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    Ryan Boudish is a Senior Researcher
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    at the Berkman Klein Center.
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    Ryan joined the Berkman Klein Center in 2011
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    as a Fellow and the Project Director of
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    Herdict.
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    In his time here Ryan has contributed policy and legal analysis
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    to a number of projects and
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    reports and he's led
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    several significant initiatives related to
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    internet censorship, corporate transparency about
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    government surveillance and multi
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    stakeholder governance mechanism
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    I should also say that Meryl and Liz have each
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    published outstanding books in the past year.
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    They're in the center of my field, at least, and
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    while "Giving Voice" by Meryl and
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    "Restricted Access" by Liz
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    offer rigorous analyses of lives lived with disabilities
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    in the 21st century
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    they're also offering very fundamental reconsiderations
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    of what it means to study
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    media and communication and technology
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    and both books are totally worth your time
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    and it's a great privilege to have
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    you all here today.
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    So, I'm going to hand it over to
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    Meryl and we'll start today's event.
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    Awesome.
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    So Liz and I, we're playing off one another a little bit in
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    the sense that each of our books
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    focuses particularly on a
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    key term. Mine, "voice" and
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    Liz's, "Access", and
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    As you might have read in the introduction to
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    this event on the event site
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    "Can we talk?", we think, is a really evocative question.
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    We'll pull in threads from each of our discussions
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    It pulls upon ability, collective
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    notions and actions of what it means to participate
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    So my presentation is Can We Talk?
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    About Voice.
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    So in my work
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    just to pull together what Dylan so graciously
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    said. I study the social implications
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    of communication technology with a focus on
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    the role of digital and mobile media
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    in the lives of young people
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    but particularly in the lives of young people with developmental
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    disabilities.
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    So that's in particular
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    autistic youth and
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    young people with significant communication
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    impairments
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    particularly related to something called
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    childhood apraxia of speech, which is basically
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    when the brain has difficulty coordinating the
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    the body parts that are needed.
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    to talk.
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    So I think about communication across different
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    levels
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    So some of these young people, instead of talking in ways that
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    you might think of in the traditional sense
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    use some thing like what Stephen Hawkings
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    uses, but instead
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    nowadays instead of having to
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    necessarily use a device that is bigger, more expensive
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    breaks, and takes a long time to replace
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    you could potentially use what I have pictured on the bottom here
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    is an iPad with this one app called
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    Proloquo2Go and
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    you can select text
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    and icons and it will fill in this top white
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    bar and you can press the bar and
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    speech will be output.
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    The language, the software is a little less sophisticated
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    than what can be created in
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    a bigger computer than that but
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    it can do a lot of work.
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    So with those unfamiliar, some of these technologies
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    sometimes they're called voice output communication aids,
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    speech generating devices,
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    or augmentative and alternative communication devices.
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    Which is ironically a mouthful to say.
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    So I'm just going to say AAC for short.
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    So because the users of these technologies
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    don't talk in the traditional sense
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    and because they use speech generating devices to communicate
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    the popular press has historically referred to
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    these types of technologies in a way
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    in which the users of them get
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    figured as voiceless.
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    So the top headline says
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    it's from the LA Times
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    It says Electronic Help for the Handicapped
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    The Voiceless Break Their Silence.
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    That's a headline about a technology called the Canon Communicator.
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    So Canon the company you might think of as cameras
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    produced a device that was
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    specifically focused on
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    voice and voice output.
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    Or, sorry, electronic voice generation.
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    2012, pretty similar headline.
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    This is about the iPad giving voice to kids with autism.
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    But the question I'm really interested in is
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    What does it mean for technology to give voice
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    to the voiceless?
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    And who does that phrase actually help or hurt in the process.
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    So to answer that question I'm going to discuss three things.
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    I'm going to talk first about the broader significance of this phrase
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    "Giving voice to the voiceless"
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    It's a phrase you might have heard but not necessarily taken a critical angle towards
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    Why it's an important concept to critique, especially
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    for people with disabilities.
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    And third, how thinking differently about voice and
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    voicelessness in this way, I think, can
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    more broadly create meaningful change
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    around technology and ethical considerations
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    more broadly.
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    Speaking of ethics...
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    So before I go much further I
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    also want to make clear that
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    I do not personally identify as having a disability.
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    I am also a white, cis, straight
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    upper-middle class woman.
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    So I'm sensitive to the power inherent in interpreting and
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    sharing the experiences of others
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    through my analytic lens.
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    But I also believe that disability is at the heart of the human experience.
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    I think this picture here gets at that.
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    So it's a picture taken by Tom Olin
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    at an ADA march in the early 90s.
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    People of various racial backgrounds,
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    people with various physical
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    and what not disabilities marching under a banner
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    of Martin Luther King Jr.'s quote, "Injustice anywhere is a threat to justice everywhere,"
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    So I think that something that is really brought out in this picture
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    is that despite structures that systematically
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    isolate and remove people with disabilities from
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    the center of society, we have to think about
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    the ways in which how we define the ways it means to be human
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    and then even within that I would say
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    because there is the MLK quote here, about the intersections of disability with
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    other kinds of identities and other potentialities for marginalization as well.
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    With that being said
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    What does it mean to give voice to the voiceless?
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    What does "giving voice" mean?
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    We might locate its origins biblically.
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    In the New International version
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    Proverbs 31:8 says, Speak up for those who cannot speak for themselves
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    for the rights of all who are destitute.
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    So not only do you get allusions about voice and speaking but
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    also a class dimension to this as well.
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    We might locate, in terms of how this is trace through different
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    professional groups, different
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    actors in the public sphere
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    journalists. So this
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    a screenshot of the Society of Professional Journalists
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    their Code of Ethics.
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    And one line of this is that journalists
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    a key journalistic duty is to be vigilant
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    and courageous about holding those with power accountable.
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    Give voice to the voiceless.
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    Moving from just sort of actors to also thinking about
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    other kinds of technologies
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    we can think about an endless list of things.
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    whether it's civic media, Twitter
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    or Open Data, as pictured here, as sort of giving voice.
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    This is from the Open Data Institute Summit, 2015.
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    The speaker's talk is "Citizen empowerment: giving a voice to the voiceless"
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    All too often, though, we consider this background
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    disability becomes instrumental
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    for another purpose outside of
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    just disability focused issues.
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    It tends to represent something broken for
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    technology to repair.
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    So consider, this is Microsoft's Super Bowl commercial
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    from 2014
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    So long after Apple had its
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    big Super Bowl commercial in the 80s
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    it took until 2014 for Microsoft to have its entry point
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    and disability is front and center here.
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    It features NFL player Steve Gleeson who lost
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    the ability to produce oral speech due to
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    ALS and the ad proclaims that
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    the Microsoft Surface Pro, which is pictured here, has
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    given voice to the voiceless.
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    And this gets exemplified by Gleeson himself
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    providing the voiceover for the commercial.
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    So we can say, and I don't have the time to play the commercial, but encourage you
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    to take a look at it,
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    in its entirety,
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    but we can say then that giving voice to the voiceless means
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    a couple of things. It means
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    that voice is used as a metaphor for
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    for agency and self-representation
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    That voicelessness is
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    is imagined as a stable and natural category
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    so THE voiceless is a thing that we can locate.
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    and as a sort of immutable thing.
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    And technology is figured as a direct opportunity, this frictionless opportunity
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    for expression.
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    So there is a lot to critique about each of
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    those kinds of claims
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    But why do I think it's particularly important to do so?
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    Particularly at this moment in time.
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    That's because, based on the ethnographic research
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    that I conducted, despite these widespread claims
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    to "give voice to the voiceless"
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    communication technologies that are intended to
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    universally empower are still subject to disempowering
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    structural inequalities,
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    and especially for people with disabilities.
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    So in my book "Giving Voice"
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    I argue that efforts to better include disabled individuals
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    within society through primarily
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    technological interventions
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    when all we do is fetishize and focus on the technology,
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    for whatever kind of commercial or affective reasons,
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    we miss the opportunity to take into account all the other ways
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    in which culture, law, policy
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    and even the design of these technologies themselves
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    can marginalize and exclude.
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    So the book is based on a 16 month ethnographic study that I conducted
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    of young people who use the iPad and
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    that Proloquo2Go app. Kids about 3 to 13.
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    I spent some time observing them getting trained how to use
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    the technologies at home with speech pathologists
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    I followed them to different user groups that young people
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    would use to talk to one another
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    I went to parent conferences. I also started
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    to interview different kinds of assistive technology
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    administrators that were in the local Southern California area
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    and lots of variations across
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    better, more resourced and less resourced school districts
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    larger, and small ones,
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    to get a sense of what were the other kinds of systems that were shaping the
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    adoption, use, or potentially
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    the non-use of these technologies.
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    So in terms of culture, I'm just going to go through three
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    examples quickly.
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    Most speech generating devices are in English.
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    The ones that are given to kids in US schools.
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    At home, that is not something that everyone uses to speak.
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    You automatically can create a disconnect there
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    between what a home culture is and what a school culture is.
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    So one specialist I talked to said "There are hundreds of languages
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    in these schools. One of the kids
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    I work with, at home, his parents speak Korean.
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    Any kind of assistive communication system
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    They wouldn't use it because they don't speak it.
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    It's a big issue. We are stuck just doing school-based
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    which is find, that's our job, but
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    it's hard. It's hard to support them acorss
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    the board because we can't.
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    So we could say that here voice is given but then
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    it's also simultaneously muted.
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    With respect to law
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    Assistive technologies are also quite
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    bluntly, borne of a world
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    in which half of the people who die at the hands
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    of police have a disability.
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    There's a 2016 report from the Ruderman Family Foundation if you want to
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    take a greater look at that.
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    But this is something that Danny's dad Peter tapped into
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    when he talked about a fear that a police officer
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    might mistake his son reaching for his communication
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    device as reaching for a weapon.
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    So he said, "I need him to be able to gesture 'yes'
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    and 'no'. If a cop's asking
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    him questions and has got a gun on him, no cop in the world
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    is going to allow him to
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    grab a talker."
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    So this awareness of the limits of
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    any given piece of technology
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    in a particular context around justice and injustice
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    was something that participants were keenly aware of.
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    That is not necessarily something that is reflected in this broader discourse.
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    So giving voice can also run the risk of being silenced.
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    Quite literally, permanently.
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    Lastly, all of this has to be understood
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    in a larger policy backdrop
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    So school district policies, what I found, tend to promote
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    there financial investments protecting those
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    more so than promoting students' continued growth.
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    This is something that Moira's mom Vanessa related to
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    in her story. So, in Southern California, kids
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    had been throwing the iPads into pools
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    this is what the mom was told and because of that the school
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    decided that they were not going to allow the kids to take
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    those iPads off campus, even though
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    they were federally mandated to provide the child
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    a way in which to communicate with others.
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    So we're bounding that within the school.
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    And the ability to challenge that
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    is completely shaped by one's access to other kinds of
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    resources: financial aid, legal assistance,
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    and social capital.
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    So Vanessa said to me, "The school district
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    changed their policy and said that iPads only remained
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    on campus, which was in voilation of
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    Moira's IEP. I wrote them and
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    said, 'This is in violation
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    I'm asking that you give me a window of opportunity
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    to purchase her a device for the home
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    One morning I was like
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    'I don't want to send this iPad to school.' I of course gave it to her
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    and it didn't come home."
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    So we could say here also, yes, voice is given,
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    but then it's taken away.
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    So how does one particular kind of case get at
  • 17:23 - 17:26
    some of these larger frameworks with which we understand
  • 17:26 - 17:28
    technology and ethics.
  • 17:28 - 17:31
    So my overall takeaway is that we should keep
  • 17:31 - 17:33
    voices attached to people.
  • 17:33 - 17:37
    So I'm drawing here on an historian, Katherine Oft,
  • 17:37 - 17:38
    who's at the Smithsonian
  • 17:38 - 17:43
    She's written an introduction to this book, this is a picture of the cover,
  • 17:43 - 17:46
    It's called "Artificial Parts, Practical Lives
  • 17:46 - 17:48
    Modern Histories of Prosthetics"
  • 17:48 - 17:49
    and she writes, "Focus on the materiality
  • 17:49 - 17:52
    of the body, not only or exclusively
  • 17:52 - 17:54
    its abstract and metaphoric meanings.
  • 17:54 - 17:58
    Keeping protheses attached to people limits the kinds of
  • 17:58 - 18:01
    claims and interpretive leaps a writer can make."
  • 18:03 - 18:06
    So I think, as well, staying very close to the body
  • 18:06 - 18:09
    staying very close to the material and embodied aspects of
  • 18:09 - 18:12
    voice is the only way for us to understand
  • 18:12 - 18:14
    the uses and abuses of voice
  • 18:14 - 18:16
    in relation to other kinds of inequalities and injustices.
  • 18:18 - 18:21
    I will just go through two applications of this
  • 18:22 - 18:23
    in terms of what I
  • 18:23 - 18:26
    use with my students to talk about politics in two ways.
  • 18:26 - 18:29
    Politics in sort of 'Big P Politics', so electoral politics
  • 18:29 - 18:31
    And 'little p politics'
  • 18:32 - 18:35
    which is power and its various manifestations.
  • 18:35 - 18:37
    And those two things are related to one another but its a simple
  • 18:37 - 18:39
    way to kind of split it up.
  • 18:39 - 18:42
    Trigger warning, there is a picture of Donald Trump
  • 18:42 - 18:44
    on the next slide. I'm just letting you know. [Audience laughs].
  • 18:46 - 18:50
    So with Big P Politics we need to keep voices attached to citizens
  • 18:50 - 18:53
    in our democracy. Despite Donald Trump's
  • 18:53 - 18:57
    demagogic insistence that he is literally our voice.
  • 18:58 - 19:01
    This is New York Times, July 22, 2016.
  • 19:01 - 19:03
    Front page of newyorktimes.com
  • 19:04 - 19:07
    This is right after Trump's acceptance speech
  • 19:09 - 19:10
    at the INC Convention
  • 19:11 - 19:17
    "Trump Pledges..." Headline, it's a picture of Trump smiling and a very large close up version of him
  • 19:18 - 19:20
    smiling in the background projected on the screen, and it says
  • 19:21 - 19:24
    "Trump Pledges Order and Says: I Am Your Voice"
  • 19:25 - 19:30
    Let's think about that in relation to ways in which people with disabilities
  • 19:30 - 19:33
    potentially have some quibbles with that.
  • 19:34 - 19:37
    So this is a screenshot from CNN's projection of
  • 19:39 - 19:43
    at the DNC, a disabled self-advocate
  • 19:43 - 19:45
    Anastasia Somoza
  • 19:45 - 19:47
    directly responding to Trump's call saying Donald Trump
  • 19:48 - 19:49
    doesn't hear me
  • 19:49 - 19:52
    he doesn't see me and he definitely doesn't speak for me.
  • 19:52 - 19:55
    So this pulling through of ways in which voice
  • 19:55 - 19:57
    is getting used and abused in particular ways
  • 19:57 - 20:01
    it is not something that people with disabilities are...
  • 20:01 - 20:04
    They are the ones that we need to look to
  • 20:04 - 20:07
    and draw upon sort of histories of resources
  • 20:07 - 20:09
    in which to grapple with
  • 20:09 - 20:11
    the uses of language
  • 20:11 - 20:14
    in ways that more often exclude than include.
  • 20:15 - 20:16
    On a technological aspect
  • 20:16 - 20:21
    nowadays there's a lot of interest in voice activated technologies
  • 20:21 - 20:24
    so Siri and Alexa
  • 20:24 - 20:27
    and in some ways those can be really accessible.
  • 20:27 - 20:30
    Those can add, if you have motor limitations, other ways
  • 20:30 - 20:31
    to access.
  • 20:31 - 20:35
    But we have to think about what kinds of voices get picked up
  • 20:35 - 20:37
    This is just a headline that says "Voice is the next big platform..."
  • 20:37 - 20:41
    But then here's another headline from Scientific american, "Why Siri won't listen
  • 20:41 - 20:44
    to millions of people with disaiblities.
  • 20:44 - 20:47
    There are particular ways in which voices are recognized or are not recognized.
  • 20:48 - 20:51
    Let alone just the kinds of voices that can be produced
  • 20:51 - 20:53
    by a given piece of technology
  • 20:55 - 20:57
    So ideas about the normal here
  • 20:57 - 20:59
    and what it means to have a voice
  • 21:00 - 21:02
    or more critical considerations.
  • 21:03 - 21:06
    So to wrap up, technologies that
  • 21:06 - 21:07
    give a voice to the voiceless
  • 21:07 - 21:09
    can also reproduce structural inequalities
  • 21:11 - 21:13
    Having a voice and being heard
  • 21:13 - 21:14
    are not necessarily the same things at all.
  • 21:14 - 21:17
    And they're also not just about technology.
  • 21:17 - 21:19
    But also about social, cultural and economic resources.
  • 21:19 - 21:22
    And having access to which is unevenly distributed.
  • 21:24 - 21:27
    My book centers the iPad but it's interesting because
  • 21:27 - 21:31
    I am really interested in what some people might call
  • 21:31 - 21:32
    an edge case or
  • 21:32 - 21:34
    you know, a sort of outside case, but
  • 21:34 - 21:37
    I really believe there's something to think about marginalization and
  • 21:38 - 21:39
    participation that
  • 21:40 - 21:42
    is really actually super central to
  • 21:42 - 21:43
    to what we're all trying to get at.
  • 21:43 - 21:47
    in terms of understanding what it means to participate.
  • 21:48 - 21:51
    So we need to keep voices materially attached to people
  • 21:51 - 21:53
    in how we build our technology or else
  • 21:54 - 21:56
    the risk is tantamount to dismantling...
  • 21:58 - 22:01
    Or if we can say the structure of democracy has been
  • 22:01 - 22:02
    stable to begin with...
  • 22:02 - 22:03
    Also an open question.
  • 22:03 - 22:06
    But at stake is not only which voices get to
  • 22:06 - 22:08
    speak but who's thought to have a voice to speak with
  • 22:08 - 22:09
    in the first place.
  • 22:09 - 22:12
    And that's my talk. [Applause from the audience].
  • 23:02 - 23:05
    Alright, so thank you for having me here today.
  • 23:07 - 23:10
    I am happy to have a chance to talk about this work
  • 23:10 - 23:12
    in conjunction with Meryl's work, because we've been
  • 23:12 - 23:15
    batting around some of the same ideas
  • 23:16 - 23:19
    regarding access, voice, participation
  • 23:20 - 23:22
    and technology and disability.
  • 23:22 - 23:28
    I've been framing my work as, essentially, cultural studies of technology.
  • 23:28 - 23:31
    I'm attempting to understand how technologies
  • 23:31 - 23:34
    reflect and reproduce particular dynamics of
  • 23:35 - 23:37
    power and how users of technologies
  • 23:38 - 23:41
    can push back upon those constructions.
  • 23:43 - 23:46
    and challenge these sort of received ways in which
  • 23:47 - 23:50
    technologies are developed along certain assumptions.
  • 23:50 - 23:56
    I'm going to be reading from my phone because I get lost on a large piece of paper.
  • 23:57 - 24:02
    To start off here we have some images reflecting a sort of pervasive
  • 24:03 - 24:06
    utopianism in talking about the internet,
  • 24:06 - 24:07
    World Wide Web, and related technologies.
  • 24:09 - 24:13
    At the top right is an image from MCI's "Anthem Commercial"
  • 24:13 - 24:16
    This young person appears speaking in American Sign Language
  • 24:16 - 24:19
    right before text that reads "there are no infirmities."
  • 24:21 - 24:24
    The TIME 2006 "Person of the Year" was You
  • 24:24 - 24:26
    with a big reflective cover.
  • 24:26 - 24:30
    And then this bottom photo is a screenshot from a Yahoo!
  • 24:30 - 24:32
    advertisement from 2009 called "It's You"
  • 24:32 - 24:37
    prioritizing this kind of individual empowerment and excitement around
  • 24:38 - 24:39
    new technologies.
  • 24:39 - 24:42
    At various points these technologies have been understood as
  • 24:43 - 24:46
    democratizing, globalizing, something that can
  • 24:46 - 24:49
    eradicate racial, gender and disability difference
  • 24:49 - 24:53
    and something that can open economic and social opportunities.
  • 24:53 - 24:57
    From the hype of cyberspace to the celebrations of Web 2.0
  • 24:57 - 25:01
    we see that stories of technology are often stories of
  • 25:01 - 25:02
    endless possibility.
  • 25:02 - 25:08
    In "Restricted Access" I am attempting to intervene in some of these celebrations.
  • 25:08 - 25:10
    by investigating digital media accessibility
  • 25:10 - 25:14
    the processes by which digital media is made useable
  • 25:14 - 25:15
    by people with disabilities
  • 25:15 - 25:19
    and arguing for the necessity of conceptualizing
  • 25:21 - 25:23
    access in a way that will be more
  • 25:24 - 25:27
    variable, and open opportunity in new ways.
  • 25:27 - 25:32
    So after all, I argue if digital media only open up these opportunities
  • 25:32 - 25:35
    to people who are already relatively privileged
  • 25:35 - 25:38
    in terms of their ability to access technology
  • 25:38 - 25:41
    then their progressive potential remains unrealized.
  • 25:42 - 25:46
    If not transformed into a means of upholding those varying inequalities.
  • 25:49 - 25:53
    Now what is media accessibility, web accessibility?
  • 25:53 - 25:57
    This is something I often illustrate with this slide
  • 25:57 - 26:00
    which is just a screen shot of the homepage of The New York Times
  • 26:01 - 26:04
    as run through the Web Accessibility and Minds
  • 26:05 - 26:07
    Online Accessibility Checker.
  • 26:07 - 26:11
    This is an automatic software tool that will check the HTML
  • 26:11 - 26:13
    and associated code of a web page
  • 26:14 - 26:16
    and flag with little red or yellow icons
  • 26:16 - 26:18
    where there might be a problem.
  • 26:21 - 26:24
    So in this case the page is being flagged for
  • 26:24 - 26:26
    not describing the image that reads "New York Times"
  • 26:27 - 26:29
    for not describing the small images
  • 26:31 - 26:34
    and for having some incorrect form usage.
  • 26:36 - 26:40
    Now, accessibility is a fascinating case because
  • 26:42 - 26:44
    it is a very granular process.
  • 26:45 - 26:49
    Essentially web content accessibility comes out of
  • 26:49 - 26:51
    non-governmental policy sources
  • 26:51 - 26:53
    such as the World Wide Web Consortium
  • 26:54 - 26:57
    It has also been taken up in various legal contexts
  • 26:57 - 27:01
    so there are laws in the United States that require accessibility in some contexts
  • 27:01 - 27:05
    and there are arguments that the ADA requires web accessibility in
  • 27:06 - 27:07
    many contexts.
  • 27:09 - 27:13
    However, these policies are written in such a way that
  • 27:13 - 27:16
    to facilitate the use of consumer technology
  • 27:16 - 27:22
    with the kinds of adaptive and assistive technologies that Meryl gestured towards.
  • 27:23 - 27:26
    Things like screen readers, alternative input devices like
  • 27:27 - 27:29
    tongue typers, joysticks,
  • 27:29 - 27:31
    these technologies are often key
  • 27:31 - 27:34
    in allowing people with disabilities to use technology
  • 27:34 - 27:39
    and accessibility ensures that software will work with those technologies.
  • 27:40 - 27:44
    However, accessibility, generally, has to be implemented
  • 27:44 - 27:47
    by individual companies, developers, website operators
  • 27:48 - 27:51
    and is therefore a highly distributed phenomenon.
  • 27:53 - 27:58
    There is no automatic way of understanding where this happens.
  • 27:58 - 28:03
    Thus a lot of my research has involved tracking digital media accessibility through
  • 28:03 - 28:08
    the policy makers, people working with the World Wide Web Consortium
  • 28:08 - 28:11
    people working in government, in academic contexts,
  • 28:11 - 28:14
    as well as with developers, consultants,
  • 28:14 - 28:18
    sometimes marketing departments are in charge of accessibility,
  • 28:19 - 28:23
    internal standards, a lot of major corporations have their own
  • 28:23 - 28:24
    accessibility standards that
  • 28:25 - 28:28
    are different to what we see in the public sphere
  • 28:29 - 28:35
    and so in these terms accessibility may be understood in highly bureaucratic and
  • 28:35 - 28:38
    technical. It creates a kind of base line
  • 28:38 - 28:42
    from which there is a possibility that people with disabilities may then access
  • 28:42 - 28:43
    and use digital media.
  • 28:45 - 28:51
    In thinking about accessibility, however, it is important to think about the terminology.
  • 28:52 - 28:55
    Because "accessibility", like "access", is an
  • 28:55 - 28:58
    often-used term that is not always attached to
  • 28:58 - 29:00
    these kinds of specialized meanings.
  • 29:04 - 29:09
    I often see accessibility invoked to refer to new possibilities.
  • 29:09 - 29:12
    The graphical user interface made desktop computing more accessible
  • 29:12 - 29:13
    to a large number of people.
  • 29:13 - 29:18
    Even as it very much shut down access for people who are visually impaired.
  • 29:19 - 29:22
    Right, so we access deployed in various contexts.
  • 29:22 - 29:27
    Additionally, access to media and information technologies has been a
  • 29:27 - 29:30
    addressed in a wide range of academic literatures.
  • 29:30 - 29:34
    From digital divides work to work on public broadcasting,
  • 29:34 - 29:36
    community television, media literacy
  • 29:37 - 29:38
    and media policy work.
  • 29:40 - 29:41
    But in all of these areas
  • 29:41 - 29:45
    access is dominantly figured as something which is "had".
  • 29:45 - 29:47
    Do you "have" access?
  • 29:48 - 29:51
    A sort of unitary and universally desired endpoint.
  • 29:51 - 29:54
    Do you have access? It is good to have access.
  • 29:54 - 29:57
    And in addition to this sort of positive and linear framing
  • 29:57 - 30:00
    the concept of access is often deployed in such a way
  • 30:02 - 30:04
    as to stand in for "availability"
  • 30:04 - 30:10
    (you have access to the telephone lines as they connect to your house, even if you don't have a telephone),
  • 30:10 - 30:15
    "affordability" (this is a subsidized service so therefore in some sort of way therefore
  • 30:15 - 30:17
    it is more accessible), or "consumer choice"
  • 30:19 - 30:22
    (you have access to 590 cable channels
  • 30:22 - 30:24
    whether you want them all or not).
  • 30:26 - 30:28
    So "access" is a flexible term.
  • 30:28 - 30:35
    But when we center disability and accessibility and their specialized senses, the gaps in some of these
  • 30:35 - 30:37
    literatures and usages emerge.
  • 30:37 - 30:41
    In fact, it seems that access is inherently variable.
  • 30:41 - 30:44
    It's dependant upon bodies, contacts and a host of other factors.
  • 30:45 - 30:49
    When we say "check Facebook", we are potentially engaged in a wide
  • 30:49 - 30:53
    range of technological and social practices that vary
  • 30:53 - 30:54
    from person to person.
  • 30:54 - 30:58
    As argued by Canadian disabilities scholar Tanya Titchkosky
  • 30:58 - 31:03
    quote, "every single instance of life can be regarded as tied to access. To do anything is
  • 31:04 - 31:08
    to have some form of access." Thus, rather than think of access as
  • 31:08 - 31:12
    a binary, or linear progression, disability studies
  • 31:12 - 31:15
    encourages us to conceive of it as a continually relationally
  • 31:15 - 31:18
    produced means of engaging with the world.
  • 31:19 - 31:22
    So we don't "have" access, we are "doing" access.
  • 31:23 - 31:29
    Now in "Restricted Access" I use this a sort of jumping off point for thinking about
  • 31:29 - 31:34
    how then can we study access as an infinitely variable and complicated phenomenon.
  • 31:34 - 31:37
    Right? This is starting to sound impossible, if every
  • 31:37 - 31:39
    construction of access is different.
  • 31:40 - 31:44
    And thus I've been using the metaphor of a kind of "Access Kit"
  • 31:44 - 31:46
    illustrated here with a sewing kit with
  • 31:46 - 31:53
    a pair of scissors, some safety pins, needles, a thimble, other things you use for sewing... I'm not a sewer.
  • 31:54 - 32:01
    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.
  • 32:02 - 32:05
    You can use this to sew.
  • 32:05 - 32:08
    Or you can take pieces and parts and use them differently.
  • 32:08 - 32:12
    You might cut up something in your kitchen, you might use the safety pin
  • 32:13 - 32:15
    to make a punk t-shirt or
  • 32:15 - 32:18
    signal your safety in a post Donald Trump world.
  • 32:20 - 32:23
    You may recombine these in different ways.
  • 32:23 - 32:28
    And thus in sort of figuring access kit, what are some sort of categories of questions?
  • 32:28 - 32:32
    What are some sort of ways that we can dig into access
  • 32:32 - 32:37
    that will allow us to look through some different lenses at how that access is being created?
  • 32:37 - 32:43
    I'm not going to go into detail here, except to say that I sort of loosely grouped these into categories of
  • 32:44 - 32:47
    regulation, use, form, content and experience.
  • 32:47 - 32:49
    Which I can talk about later.
  • 32:49 - 32:55
    And together they encourage us to think about access as a relational phenomenon.
  • 32:55 - 32:58
    Drawing attention to what a cultural studies perspective might call
  • 32:58 - 33:04
    the articulations of bodies, technologies, institutions, geographies and social identities.
  • 33:05 - 33:10
    So access is not one thing, but many. Not an end point, but also not a beginning.
  • 33:10 - 33:15
    Nico Carpentier has referred to access as a precondition for participation
  • 33:15 - 33:17
    before we can participate we must access
  • 33:17 - 33:22
    but through the study of digital media accessibility for disability
  • 33:23 - 33:30
    it's become evident to me that the production of access is an on-going part of participation in a digitally mediated society.
  • 33:31 - 33:35
    Now one of my favourite examples in the book is the case of Tumblr.
  • 33:35 - 33:40
    As some of you probably know, Tumblr is a multimedia microblogging platform
  • 33:43 - 33:48
    that is characterized by the sharing or reblogging of posts across the network,
  • 33:48 - 33:52
    the formation of interest groups, and a lesser emphasis on individual identity display.
  • 33:52 - 33:54
    Than many social networks.
  • 33:55 - 34:00
    It is, however, populated by user generated content and thus not obviously
  • 34:00 - 34:06
    bound by the legal and technical requirements faced in government, educational or ecommerce spaces.
  • 34:07 - 34:10
    Perhaps as a result, Tumblr is formally inaccessible.
  • 34:11 - 34:16
    It is difficult to add alternate text to images, even if you wanted to and knew how.
  • 34:16 - 34:21
    It features infinite scroll, which can be a challenge for many assistive technologies,
  • 34:21 - 34:25
    and it uses very limited mark up features to indicate importance.
  • 34:26 - 34:31
    Additionally, the content is highly variable and often animated.
  • 34:31 - 34:35
    Adding additional challenges from an accessibility perspective.
  • 34:35 - 34:42
    So from a sort of top down perspective, the inaccessibility of Tumblr seems like a problem.
  • 34:43 - 34:48
    However, in my work I've tried to couple the institutional perspective
  • 34:48 - 34:51
    with a more on the ground user perspective.
  • 34:51 - 34:55
    I did roughly 25 interviews with disabled users about
  • 34:55 - 34:58
    how they use these technologies and why and what was frustrating.
  • 35:00 - 35:04
    In these interviews I've got on the one hand, people telling me
  • 35:04 - 35:07
    that they contact Tumblr and talked about the accessibility policies
  • 35:08 - 35:10
    and were just totally rebuffed.
  • 35:10 - 35:13
    Tumblr was not interested in talking to them, did not change anything.
  • 35:16 - 35:23
    However, they also pointed towards group pages such as Accessibility Fail and F Yeah Accessibility
  • 35:23 - 35:28
    as other places they were in fact finding community and using this platform.
  • 35:31 - 35:35
    In some of these cases users were adopting and adapting Tumblr,
  • 35:35 - 35:38
    sharing experiences of micro aggressions, sharing accessibility knowledge,
  • 35:38 - 35:42
    teaching each other work arounds by which to make a site more accessible.
  • 35:43 - 35:46
    Furthermore, this kind of grassroots accessibility
  • 35:46 - 35:49
    revealed some different meanings of access.
  • 35:49 - 35:51
    and the values associated with it.
  • 35:52 - 35:57
    While accessibility is often through of as a matter of law, policy, or technology
  • 36:00 - 36:04
    or the provision of services and a kind of charity model,
  • 36:04 - 36:08
    many users were much more likely to talk about it in terms of affective and cultural dimensions.
  • 36:09 - 36:15
    Many prioritized feeling welcomed rather than merely accommodated, or being included as
  • 36:15 - 36:18
    members of a community rather than as afterthoughts.
  • 36:19 - 36:22
    Or having their non-technical needs met.
  • 36:22 - 36:27
    For instance, many disable Tumblr users praised the site because its large social justice community
  • 36:27 - 36:30
    meant that trigger warnings were commonly used.
  • 36:31 - 36:36
    Trigger warnings, or as we saw with Donal Trump, are a brief indication of when and how
  • 36:36 - 36:40
    content might be upsetting for someone with a particular kind of trauma
  • 36:40 - 36:45
    and they're well beyond the scope of technological accessibility policy. However, as one
  • 36:45 - 36:49
    interviewee told me, "Trigger warnings make a site accessible to me."
  • 36:49 - 36:55
    Indicating respect for the emotional and social needs that can often accompany disability.
  • 36:55 - 37:02
    Building out of such examples, I end "Restricted Access" by talking about cultural accessibility
  • 37:02 - 37:05
    as a means of moving towards a more accessible and just future.
  • 37:05 - 37:09
    This moves beyond sort of technocentric notions of accessibility or
  • 37:09 - 37:14
    accommodation and aims to highlight the interrelationships among technological
  • 37:14 - 37:21
    and economic access, cultural representation and production, and access to community in the public sphere.
  • 37:21 - 37:27
    Not simply universal design, cultural accessibility prioritizes the on-going
  • 37:27 - 37:32
    perspectives and visibility of people with disabilities and it may best be achieved through
  • 37:32 - 37:37
    sort of participatory collaborations between users, policy makers, industries and others.
  • 37:39 - 37:46
    I've illustrated this concluding point with a screen shot of actress Teal Shearer, who created a web
  • 37:46 - 37:50
    series called "My Gimpy Life" which she funded through Kickstarter.
  • 37:50 - 37:57
    So already we're seeing a sort of host of contemporary digital media technologies brought to bear
  • 37:58 - 38:05
    and in this case Shearer also prioritized disability, community and access both on screen and off.
  • 38:05 - 38:10
    The web series had an onscreen credit to the person who produced the close captioning
  • 38:10 - 38:14
    The Kickstarter page developed over time into more of a community space
  • 38:14 - 38:16
    than a fundraising space
  • 38:19 - 38:25
    and we see a range of relationships and connections forming that potentially
  • 38:25 - 38:30
    enable the formation of community and the movement into a larger civic and public sphere.
  • 38:31 - 38:33
    from inclusive cultural spaces.
  • 38:33 - 38:39
    Ultimately then, I would argue that access is not simply a prerequisite to participation,
  • 38:39 - 38:42
    access and participation depend upon one another.
  • 38:42 - 38:44
    Just as access enables participation
  • 38:46 - 38:52
    so does increased participation by diverse people make possible the expansion of access.
  • 38:55 - 38:57
    And I will wrap it up there so that we have some time. [Audience applause].
  • 39:11 - 39:16
    Okay I'm going to start with one question for the three of you and then we can open
  • 39:16 - 39:18
    it up as quickly as possible to Q&A.
  • 39:18 - 39:23
    So it strikes me that constantly all of our work is constantly playing
  • 39:23 - 39:28
    catch up with lived experience and Ryan I'm thinking of your work with Herdict
  • 39:28 - 39:31
    is in some way, is always trying to close that gap
  • 39:33 - 39:38
    between lived experiences of blockages or clogs or censorship online
  • 39:38 - 39:42
    and the point at which there is greater public awareness
  • 39:42 - 39:43
    about those blockages.
  • 39:46 - 39:50
    And scholarship by design is sort of laggy because of the time it takes
  • 39:50 - 39:54
    to dwell on things and the time it takes to publish things
  • 39:55 - 39:57
    so I wonder how each of you think
  • 39:59 - 40:02
    about lagginess with regard to lived experience in
  • 40:04 - 40:05
    each of your projects.
  • 40:05 - 40:07
    Maybe we can start with Ryan.
  • 40:10 - 40:14
    So I'll just first preface my response by saying
  • 40:17 - 40:20
    as Dylan mentioned in my introduction I spend my
  • 40:26 - 40:29
    work days thinking about access to technology
  • 40:31 - 40:34
    and who controls these sort of elements of the web
  • 40:36 - 40:39
    and the internet and our technologies
  • 40:41 - 40:45
    but in my personal life as someone who wears hearing aids I think a lot
  • 40:46 - 40:49
    sort of in the very specific use case of how that
  • 40:51 - 40:54
    technology enables and limits me personally
  • 40:55 - 40:56
    in different ways.
  • 41:00 - 41:01
    And so I found the
  • 41:02 - 41:05
    discussion from Liz and Meryl really interesting
  • 41:06 - 41:07
    and important.
  • 41:08 - 41:12
    So on this question of lagginess, you know, one of the
  • 41:13 - 41:15
    things that really jumps out at
  • 41:16 - 41:19
    me and I think picks up on something that
  • 41:19 - 41:21
    Meryl was saying, was that this
  • 41:22 - 41:23
    question of, you know,
  • 41:25 - 41:27
    technology reproducing
  • 41:29 - 41:31
    structural inequalities
  • 41:34 - 41:37
    and something that I think is on that point is
  • 41:38 - 41:40
    interesting to me is that
  • 41:41 - 41:42
    I see a lot of
  • 41:46 - 41:48
    convergence going on in technologies
  • 41:49 - 41:52
    that, as Meryl's example showed,
  • 41:52 - 41:54
    that people can use iPads which are
  • 41:54 - 41:57
    consumer technologies to do things that
  • 41:58 - 41:59
    earlier might have required
  • 42:01 - 42:03
    going through a medical specialist or
  • 42:08 - 42:11
    getting very expensive medical technologies
  • 42:11 - 42:13
    and in the hearing aid market there is a lot of
  • 42:15 - 42:17
    movement now to allow companies
  • 42:17 - 42:19
    to sell things that aren't quite hearing aids
  • 42:19 - 42:21
    but do essentially everything that
  • 42:22 - 42:24
    a hearing aid could do
  • 42:27 - 42:29
    and there is a lot of pros and cons
  • 42:29 - 42:32
    to that approach, you know, there's the potential
  • 42:32 - 42:36
    that it could lower the cost that a lot of people that don't get hearing aids
  • 42:36 - 42:38
    could suddenly get hearing aids
  • 42:39 - 42:42
    but no longer are they having it fine tuned
  • 42:42 - 42:43
    by a medical professional
  • 42:47 - 42:50
    and all of that, and so as you converge
  • 42:52 - 42:55
    sort of mainstream technology and
  • 42:55 - 42:56
    technology that helps people with disabilities
  • 42:58 - 43:00
    in some ways I think that
  • 43:00 - 43:02
    you can turn Meryl's question into
  • 43:03 - 43:04
    or prompt around
  • 43:06 - 43:07
    and say
  • 43:08 - 43:12
    in what ways is all technology reinforcing societal and structural
  • 43:15 - 43:18
    inequalities and, you know, to Sarah Hendren has
  • 43:18 - 43:20
    talked about how all technology is
  • 43:20 - 43:24
    assistive technology. You know, we're not naturally born with
  • 43:24 - 43:27
    the ability to get our emails on our wrists and
  • 43:27 - 43:30
    you know, and yet, technology enables us to do that.
  • 43:34 - 43:38
    So in what ways is technology that all of us are using in assistive ways
  • 43:40 - 43:44
    reproducing things that maybe we should be taking a closer look at?
  • 43:47 - 43:49
    One example that comes to mind is
  • 43:52 - 43:54
    how autonomous vehicles
  • 43:54 - 43:58
    are certainly something, you know, to talk about access,
  • 43:59 - 44:01
    can potentially allow people who
  • 44:01 - 44:04
    either physically can't drive or they're too old to drive
  • 44:06 - 44:08
    allows them to have mobility
  • 44:09 - 44:11
    as ride sharing services
  • 44:12 - 44:17
    will start using it there is the potential to open up access for lots of people
  • 44:17 - 44:20
    and yet ride sharing and autonomous vehicles often
  • 44:20 - 44:21
    rely very heavily on
  • 44:22 - 44:26
    mapping and so parts of the world are simply not mapped.
  • 44:26 - 44:28
    And those places don't get access.
  • 44:29 - 44:31
    And so there is an example of where
  • 44:32 - 44:35
    technology, taken out of the disability context,
  • 44:36 - 44:39
    but something that you could characterize
  • 44:40 - 44:41
    at a very basic level
  • 44:41 - 44:43
    as accessibility technology
  • 44:46 - 44:50
    is itself going to potentially reproduce the structural inequalities
  • 44:50 - 44:53
    that places like the favelas in Brazil
  • 44:53 - 44:56
    are very heavily populated but are not mapped
  • 44:56 - 44:58
    will not have access to these technologies.
  • 44:58 - 45:03
    I'm not quite sure that answers your question about lagginess
  • 45:05 - 45:10
    But there are just some bigger questions to me about technology in general
  • 45:10 - 45:14
    and how that's reproducing these inequalities
  • 45:15 - 45:18
    and I think it does raise these questions of
  • 45:18 - 45:20
    you know, from a lagginess perspective
  • 45:23 - 45:26
    that we have to sort of think of these things
  • 45:26 - 45:27
    in their broader context and not
  • 45:27 - 45:29
    just in a disability context.
  • 45:31 - 45:37
    I'll just say something very briefly because then I want to make sure we have time for questions
  • 45:38 - 45:40
    but just talking about lag
  • 45:40 - 45:44
    and delay and whether that's a negative or a positive thing
  • 45:45 - 45:47
    or an inevitable thing
  • 45:47 - 45:49
    but I immediately thought of when you brought up
  • 45:49 - 45:53
    you know the relational, or the sort of act of access, it is a process
  • 45:53 - 45:54
    and not just a product.
  • 45:54 - 45:57
    Thinking about with speech generating devices
  • 45:57 - 45:59
    that it can take a while to create a message
  • 45:59 - 46:01
    for it to then be output for somebody to say.
  • 46:03 - 46:07
    The fluidity with which one might be able to potentially
  • 46:08 - 46:11
    depending on what kind of motor
  • 46:11 - 46:12
    impairment they might or might not have
  • 46:12 - 46:16
    the patience that is required for a conversation partner
  • 46:16 - 46:20
    even if you've got a technology that works well, it's top of the line, it's fully charged,
  • 46:20 - 46:21
    that's a whole other thing
  • 46:22 - 46:25
    can't talk if the thing doesn't have any juice.
  • 46:25 - 46:30
    that the patience that is required of somebody else to follow a pace of conversation
  • 46:31 - 46:36
    that might not be that one that they themselves enact or are use to having with another person.
  • 46:39 - 46:44
    So that process, that patience, and that is something that is learned and something that
  • 46:44 - 46:46
    somebody who doesn't have a speech disability would have to be able to become
  • 46:47 - 46:48
    better at equiped at
  • 46:48 - 46:51
    So think about the kinds of personal, social and cultural
  • 46:51 - 46:54
    equipment that is needed for participation
  • 46:54 - 46:56
    and that gets sort of like added to the
  • 46:56 - 47:00
    list here just thinking about temporality in that way.
  • 47:25 - 47:27
    It's just a small comment.
  • 47:28 - 47:30
    I'm from Columbia.
  • 47:30 - 47:36
    We don't have that many resources so we have to come up with creative solutions.
  • 47:36 - 47:41
    The main problem with these kinds of issues is the economies of scale.
  • 47:41 - 47:45
    As the population is not big, the market is not providing solutions for them.
  • 47:46 - 47:49
    So for example in the case of deaf people...
  • 47:51 - 47:52
    we create this relay center
  • 47:52 - 47:54
    with sign language.
  • 47:57 - 48:00
    So a person who is deaf could connect to an app
  • 48:03 - 48:07
    and this remote person can translate from sign language
  • 48:07 - 48:10
    so the deaf person can present an exam or
  • 48:10 - 48:14
    have a consultation with a doctor or rely any kind of communication
  • 48:14 - 48:17
    so this is one example of a solution to economies of scale.
  • 48:17 - 48:21
    The other is we buy a country license for a screen reader.
  • 48:26 - 48:28
    So one license is, I think, $1000 per person
  • 48:29 - 48:30
    per year
  • 48:30 - 48:34
    but if you buy a country license where it's less than $1 per person, per year
  • 48:36 - 48:38
    or per computer, per year
  • 48:41 - 48:44
    We buy thousands of thousands of licenses so we can
  • 48:44 - 48:46
    install a license in every internet cafe
  • 48:46 - 48:48
    in every school, for example.
  • 48:50 - 48:53
    People are not paying because it's so cheap
  • 48:56 - 49:00
    to charge for, so for example, the school pays a little
  • 49:00 - 49:02
    and we gather all this money and buy a country license,
  • 49:02 - 49:06
    which is tremendously cheaper than paying individually.
  • 49:13 - 49:18
    I hadn't heard about country licenses. That's really fascinating, I want to know more.
  • 49:20 - 49:23
    But in terms of scale, we may think about
  • 49:23 - 49:26
    the sort of things that Ryan brought up with mainstreaming as being one
  • 49:26 - 49:30
    way in which mainstream technologies are taking on assistive functions
  • 49:31 - 49:34
    which enables a different kind of scaling
  • 49:34 - 49:36
    When we are talking about assistive technologies
  • 49:37 - 49:39
    that are developed as such
  • 49:39 - 49:44
    they're often very expensive because there's a small market and a lot of research that goes into them.
  • 49:47 - 49:50
    When those can be deployed in consumer devices
  • 49:50 - 49:52
    some of those costs go down but as I think
  • 49:53 - 49:56
    Ryan indicated sometimes oversight goes down as well.
  • 49:56 - 49:59
    You don't have a medical professional adjusting the hearing aids
  • 50:00 - 50:03
    I've been doing some research on emergency lately
  • 50:03 - 50:07
    and you don't really have very good connections to 911 when
  • 50:07 - 50:09
    you're relying on an app to dial it for you.
  • 50:10 - 50:12
    So there are ways in which that is changing.
  • 50:17 - 50:20
    I just had a question about the differences between
  • 50:21 - 50:23
    adults and kids
  • 50:24 - 50:26
    and particularly I think that there is often
  • 50:26 - 50:30
    you know, talking about voice and voiceless, you know, many times
  • 50:34 - 50:35
    kids are voiceless
  • 50:36 - 50:38
    either simply because they
  • 50:38 - 50:40
    aren't at the emotional or intellectual
  • 50:41 - 50:44
    place where they can talk about what is going on
  • 50:44 - 50:47
    or legally their parents speak for them
  • 50:48 - 50:52
    and I know from my personal experience when I was
  • 50:53 - 50:57
    5 or 6 the last thing I wanted to be doing was wearing hearing aids
  • 50:59 - 51:02
    and I didn't want people to ask me about them and
  • 51:02 - 51:05
    if it was my choice I would have just taken them out
  • 51:05 - 51:06
    but luckily it wasn't my choice
  • 51:07 - 51:10
    And so I was wondering if you could talk about
  • 51:10 - 51:12
    some of the differences that you guys have seen
  • 51:14 - 51:17
    in particular, you quoted some parents talking,
  • 51:18 - 51:19
    about their experiences
  • 51:21 - 51:25
    I'd be interested to hear about how these issues of voice and voiceless
  • 51:26 - 51:30
    and access are different or different challenges emerge
  • 51:30 - 51:32
    when you're dealing with adults versus kids
  • 51:38 - 51:40
    I've worked primarily with adults
  • 51:40 - 51:43
    and in part that's because when we are looking at
  • 51:44 - 51:48
    disability spaces there is a lot of attention often to K-12
  • 51:50 - 51:54
    education and to particularly what can be done to help children
  • 51:55 - 51:59
    and there is often a drop off of when those children become adults.
  • 51:59 - 52:03
    So by looking at online spaces where people with disabilities
  • 52:04 - 52:09
    were engaging with one another and creating disability culture I think
  • 52:09 - 52:14
    I get an interesting sort of perspective on what happens after that.
  • 52:14 - 52:19
    Right in that sort of less structured space but obviously for research on kids
  • 52:19 - 52:24
    I think the kid focus is particularly just from my expertise and background more than anything
  • 52:25 - 52:28
    Even then, thirteen tends to become my cutoff.
  • 52:28 - 52:31
    Fourteen in the US, you're meant to at least federally, have a mandate
  • 52:31 - 52:33
    mandate to talk about transition to adulthood
  • 52:34 - 52:37
    and that's where I sort of stop, even though
  • 52:37 - 52:39
    you can be like 30 and really be into Elmo
  • 52:39 - 52:43
    and in my first book I talk in "Digital Youth with Disabilities" talk about
  • 52:44 - 52:48
    age appropriateness and the fluidity with which radical spaces can
  • 52:48 - 52:52
    potentially be created outside of related to interested or related to
  • 52:52 - 52:56
    different cultural spaces like theater performances that
  • 52:58 - 53:04
    have sensory inclusivity, sort of mixed aged, mixed abilities of all different sort of kinds
  • 53:04 - 53:07
    and I think that with the book a lot of the research
  • 53:09 - 53:10
    in terms of the kids
  • 53:11 - 53:14
    there are the parents that are quoted
  • 53:14 - 53:18
    In the book there are a lot of descriptors of behaviour
  • 53:18 - 53:21
    and of interactions with kids and other individuals
  • 53:23 - 53:26
    I did not have the skill to interview some of the
  • 53:30 - 53:32
    kids in terms of their capacity to use
  • 53:32 - 53:35
    ...the whole point was that they didn't have reliable access to communication
  • 53:37 - 53:43
    and so the challenges of then doing that work outside of triangulating different sort of
  • 53:44 - 53:49
    behaviours and different kinds of expressions, vocalizations or excitements
  • 53:50 - 53:53
    in kinds of spaces. I would say for my next book project
  • 53:53 - 53:56
    which is focused on the experiences of autistic youth
  • 53:56 - 53:58
    growing up in the digital age
  • 53:59 - 54:02
    and different kinds of ways that communication happens
  • 54:03 - 54:06
    I'm grappling with that right now in terms of in interviews that I'm doing
  • 54:08 - 54:13
    directly with kids, the ways that I talk with them about their media practices
  • 54:13 - 54:15
    Again, some of that is oral and some of that is not
  • 54:15 - 54:17
    and so part of that is sometimes the challenge of
  • 54:17 - 54:19
    presenting fieldwork to an audience
  • 54:19 - 54:21
    and the legibility of that
  • 54:21 - 54:23
    as opposed to sort of just having
  • 54:24 - 54:26
    a video or another kind of recording
  • 54:26 - 54:29
    so that kind of gets at our methods and
  • 54:31 - 54:32
    the ways in which we
  • 54:32 - 54:34
    make our research visible
  • 54:34 - 54:36
    and the ways in which certain kinds of visibilities
  • 54:39 - 54:41
    can unintentionally privilege
  • 54:41 - 54:43
    or reflect certain ways in which the research was or was not conducted.
  • 54:49 - 54:53
    Hi, I have one comment about giving voice to the voiceless.
  • 54:53 - 54:55
    I really liked the point about how voiceless
  • 54:56 - 55:00
    is seen as a means for agency and self presentation.
  • 55:00 - 55:02
    I was just thinking about if you change the headline to something different
  • 55:02 - 55:05
    instead of giving voice to the voiceless
  • 55:06 - 55:09
    to something like "Listen to the Unlistenable"
  • 55:11 - 55:14
    it'll be a totally different focus on
  • 55:15 - 55:18
    instead of on the person who needs to be given a voice
  • 55:19 - 55:22
    it will be on behalf of us to train our listening capacity.
  • 55:22 - 55:26
    So I don't know whether you've thought about that.
  • 55:26 - 55:28
    Yeah, so listening and speaking
  • 55:28 - 55:31
    and the dynamics between those things are something that I talk about more in the book
  • 55:34 - 55:39
    and that gets a little bit to... There's a phrase I really, really love...
  • 55:39 - 55:40
    A media justice scholar Tanya Draya talks about. The partial promise of voice
  • 55:40 - 55:43
    So voice's incompletion, the partiality of it,
  • 55:44 - 55:49
    to fully say that we have any kind of grasp or pin-downableness of it
  • 55:50 - 55:52
    because that understanding of respect
  • 55:54 - 55:57
    of a message being acted on and a promise being kept
  • 55:57 - 55:59
    and that's partly in larger public sphere discussions
  • 56:01 - 56:04
    but I think that point about listening
  • 56:04 - 56:05
    whether one is able to be listened to or not...
  • 56:06 - 56:10
    again that's a... Begin to think about that in a biological
  • 56:10 - 56:17
    individual level, a social level, a political... You know... what the mechanisms are for feedback
  • 56:17 - 56:21
    But also some of that can sort of reinforce who's in power in the first place.
  • 56:24 - 56:27
    And in what ways can that still enforce an us/them
  • 56:30 - 56:34
    An essentializing idea of having and not having of giving and not having.
  • 56:39 - 56:41
    Hi, I have a comment then a question.
  • 56:41 - 56:44
    I had the great pleasure and I will say some humility,
  • 56:44 - 56:45
    about ten years ago
  • 56:45 - 56:48
    I was teaching at Northeastern for adults
  • 56:48 - 56:51
    and one of my students was a 74 year old blind man
  • 56:51 - 56:52
    who lost his sight at 32
  • 56:53 - 56:55
    and I learned the day in the life of
  • 56:56 - 56:59
    someone who is disable and I had to rearrange my entire
  • 57:02 - 57:04
    how I was going to structure an exam
  • 57:04 - 57:06
    because we were in a computer class room and he had to go in a special room
  • 57:07 - 57:10
    and if they didn't have the jaws then I would have to work
  • 57:10 - 57:14
    with the Northeastern disability office to have someone come and have a reader
  • 57:15 - 57:19
    read the exam to him and I learned something at the MA disability
  • 57:20 - 57:26
    I just say, "oh just go to the bookstore and go and get volume 6 of the book for the class"
  • 57:28 - 57:31
    and the one they had for the brail was version 3.
  • 57:31 - 57:34
    Things that we just take for granted.
  • 57:34 - 57:35
    It's just very humbling
  • 57:35 - 57:37
    Another time I was at an event where
  • 57:39 - 57:42
    there was a company who had an event
  • 57:42 - 57:44
    at the faculty club where they were talking and saying that many
  • 57:44 - 57:46
    times when they have events here
  • 57:46 - 57:49
    or classes they have closed captioning
  • 57:49 - 57:52
    and they said that many times foreign students,
  • 57:52 - 57:55
    to help them learn English, are using it.
  • 57:55 - 57:59
    So that's like the number one reason in addition to disability.
  • 57:59 - 58:01
    So my question here is...
  • 58:01 - 58:02
    We're in an area where we have so many start-ups
  • 58:02 - 58:06
    and just like until recently, cyber security and writing secure code is
  • 58:08 - 58:14
    an after thought... disability for many places is like, "yeah, yeah, whatever..."
  • 58:16 - 58:20
    Is there anything that can be done to teach the CS students
  • 58:21 - 58:26
    that are coming to our courses, at MIT, here at Harvard, the people who
  • 58:26 - 58:28
    before they start their careers, to incorporate it into
  • 58:31 - 58:35
    design so it's not... So let's take it and make it part of
  • 58:36 - 58:37
    how you learn how to create
  • 58:37 - 58:40
    So you will not have these credible disparities
  • 58:42 - 58:43
    in accessibility.
  • 58:44 - 58:46
    One thing I would say is to
  • 58:47 - 58:51
    read histories of people with disabilities as actors in the
  • 58:51 - 58:52
    history of the development of computing.
  • 58:53 - 58:56
    So the idea that it is more like you're not adding on
  • 58:56 - 59:02
    disability... Like, the recovery of people with disabilities in computing history or engineering history
  • 59:04 - 59:07
    is really central to that idea of not developing
  • 59:07 - 59:09
    a sort of charity model
  • 59:09 - 59:12
    of disability pedagogy in a field like CS.
  • 59:15 - 59:16
    I'll just add to that.
  • 59:16 - 59:18
    I've done some work on how web accessibility
  • 59:18 - 59:22
    was explicitly an afterthought in teaching web development
  • 59:22 - 59:23
    for many, many years.
  • 59:23 - 59:26
    In the sense that it would be the last chapter of the book
  • 59:26 - 59:29
    Once you've learnt to do everything else, maybe you'll look at this
  • 59:29 - 59:31
    but you probably won't
  • 59:31 - 59:35
    And that's something that's borne out of a lot of computer studies curriculum.
  • 59:36 - 59:39
    They don't have courses on accessibility
  • 59:39 - 59:43
    and basic lessons don't incorporate it as something that you do as part of a process.
  • 59:44 - 59:48
    The International Association of Accessibility Professionals is a
  • 59:48 - 59:51
    young organization maybe four or five years old
  • 59:52 - 59:57
    that's explicitly attempting to address that by making some sort of
  • 59:58 - 60:00
    best practices for CS education and
  • 60:00 - 60:03
    offering some certifications for people who have
  • 60:03 - 60:08
    actual training in accessibility to use once they go out into the job market.
  • 60:11 - 60:14
    Then of course there is a whole world of universal design
  • 60:14 - 60:16
    and design for disability and design literatures
  • 60:18 - 60:19
    focused on how to
  • 60:20 - 60:23
    incorporate diverse users at an early stage.
  • 60:26 - 60:29
    I was just going to say that I am somewhat optimistic
  • 60:30 - 60:32
    in this sense right now
  • 60:32 - 60:35
    because I think that when you look at
  • 60:36 - 60:38
    things like wearable technologies and
  • 60:39 - 60:41
    there's so much more
  • 60:41 - 60:43
    focus right now on the mainstream
  • 60:43 - 60:46
    and I think this gets back to this kind of convergence point
  • 60:46 - 60:48
    there is so much more focus right now on
  • 60:48 - 60:51
    human-machine interaction and artificial intelligence
  • 60:51 - 60:52
    and a lot of the technologies
  • 60:52 - 60:54
    that are necessary to make
  • 60:56 - 60:57
    wearables better
  • 60:58 - 61:03
    to make augmented reality better, to make autonomous vehicles better
  • 61:04 - 61:06
    the improvements that have been made
  • 61:08 - 61:12
    over the last several years in computer vision technology
  • 61:14 - 61:18
    all of those things will help on this lagginess question
  • 61:18 - 61:24
    I think it's that as more technology and these start-ups are thinking more about
  • 61:24 - 61:26
    how machines interact with the physical world
  • 61:26 - 61:29
    they're solving some of these problems
  • 61:29 - 61:31
    that maybe have traditionally been
  • 61:31 - 61:34
    have been the after thought problems
  • 61:35 - 61:38
    and they're not approaching it in the mindset of
  • 61:38 - 61:40
    how do we solve problems with people with disabilities
  • 61:41 - 61:43
    but I think that the applications
  • 61:43 - 61:45
    are getting closer and closer
  • 61:46 - 61:48
    so that it's not such a leap to figure out
  • 61:48 - 61:50
    oh, we designed this thing, now we have to
  • 61:50 - 61:53
    figure out how to apply it in a whole new context
  • 61:54 - 61:57
    but it's actually like, oh, we now have something
  • 61:57 - 62:00
    that can identify what's going on in this room
  • 62:00 - 62:03
    because we need it for our artificial intelligence technology
  • 62:03 - 62:06
    and that makes it super easy to design something for someone
  • 62:06 - 62:08
    with a visual impairment. So, I'm optimistic.
  • 62:10 - 62:14
    So just a quick comment on that last bit, there is an
  • 62:14 - 62:17
    industrial thing called Teach Access
  • 62:18 - 62:21
    it's a consortium of a number of the big companies
  • 62:23 - 62:25
    are trying to put together curricula to
  • 62:25 - 62:27
    distribute throughout a bunch of universities for specifically integrating
  • 62:27 - 62:29
    it into the CS curriculum.
  • 62:29 - 62:32
    There's a lot of trouble there because a lot of the
  • 62:32 - 62:34
    industries are trying to hire people and
  • 62:34 - 62:36
    nobody knows anything about it
  • 62:36 - 62:38
    and so this is actually a pull from industry to try and
  • 62:39 - 62:41
    be able to key that up a little bit.
  • 62:43 - 62:44
    So it's something to look at.
  • 62:44 - 62:45
    I just had a question. A lot of the
  • 62:46 - 62:49
    regulatory issues and the policy issues in
  • 62:49 - 62:51
    accessibility have to do with
  • 62:51 - 62:56
    things around either livelihoods or access to government services
  • 62:56 - 63:00
    these things that are really very instrumental in getting things done in your life.
  • 63:00 - 63:03
    I'm wonder if you could speak a little bit to
  • 63:03 - 63:08
    issues around entertainment or just sociality of just interacting
  • 63:08 - 63:13
    because as much more of our lives become mediated the access of these things become much more critical
  • 63:14 - 63:15
    to just our lives.
  • 63:16 - 63:20
    And I don't see a lot of discussion about that in a lot of disability discussions.
  • 63:22 - 63:27
    I think the place you see the most discussion of that sort of thing is
  • 63:28 - 63:29
    in captioning.
  • 63:29 - 63:33
    Particularly, in the past several years as Netflix captioned its content
  • 63:34 - 63:37
    both the activism around that and then the
  • 63:40 - 63:43
    21st Century Video and Communication Act
  • 63:43 - 63:47
    took some steps towards prioritizing that kind of access
  • 63:47 - 63:50
    But I think it's a really intesting question to think
  • 63:50 - 63:52
    about content and what we're gaining access to
  • 63:55 - 63:59
    and making sure that access to video games and access to pornography
  • 63:59 - 64:04
    are still kinds of access, and people with disabilities are not less entitled
  • 64:05 - 64:10
    to things that we think are morally dubious than are other people.
  • 64:10 - 64:15
    So there's certainly some tension there, right? Because government doesn't want to get into
  • 64:16 - 64:20
    that if they can avoid it. But I'm encouraged because
  • 64:20 - 64:24
    I see that that's also happening in informal ways.
  • 64:26 - 64:29
    Major league baseball did what's called a
  • 64:29 - 64:31
    structured negotiation where instead of a lawsuit
  • 64:31 - 64:34
    they worked with disabled community memebers
  • 64:34 - 64:39
    to make websites and streaming baseball games more accessible.
  • 64:42 - 64:47
    So that's something where the mandate for MLB to be accessible is not really there
  • 64:48 - 64:51
    but through some processes of introductions and collaboration
  • 64:53 - 64:57
    you can actually get to places where that content is being
  • 65:00 - 65:03
    addressed but it's very much not from the W3C.
  • 65:05 - 65:08
    There's a chapter in the book that's about
  • 65:08 - 65:12
    centering on... The question is like 'what is an iPad for?'
  • 65:15 - 65:19
    There were these real tensions around whether an iPad was for that app exclusively
  • 65:20 - 65:23
    or whether it was also for all of the other things
  • 65:23 - 65:26
    that any of the other things that a person might use it for
  • 65:26 - 65:29
    and a lot of things that were related to
  • 65:30 - 65:34
    issues around taste, related to issues of ownership,
  • 65:34 - 65:39
    the idea of whether you had multiple different pieces of those hardware
  • 65:39 - 65:43
    to delineate and make distinctions between what each of those things are for
  • 65:43 - 65:47
    but for me the real lightening strike in that was I was doing an observation
  • 65:48 - 65:53
    and the speech pathologist I was with had very negative things to say about YouTube
  • 65:53 - 65:56
    even though it was clearly something that the kid enjoyed
  • 65:58 - 66:03
    that motivated them to use this app in the first place to communicate
  • 66:03 - 66:09
    but there were lots of values about kids and their iPads and their YouTubes and are shut down
  • 66:09 - 66:12
    and the ways that that particularly extra marginalized
  • 66:12 - 66:18
    families who maybe didn't have access to, or the ability to mobilize resources
  • 66:18 - 66:20
    I want to also phrase it as that way
  • 66:20 - 66:25
    around English language, mobilize resources around community members
  • 66:25 - 66:27
    who had other kinds of access to other kinds of resources
  • 66:27 - 66:32
    social capital, the cultural capital to push bak against that person
  • 66:33 - 66:33
    in any way
  • 66:35 - 66:42
    Especially because an iPad is designed to be a consumption technology not necessarily for creation
  • 66:42 - 66:44
    and somewhat for circulation
  • 66:44 - 66:47
    just thinking about the people wanting to take advantage of
  • 66:47 - 66:51
    all of these things that can be done but some of the professional
  • 66:53 - 66:57
    push backs around expertise and it's a mainstream technology but
  • 66:57 - 67:02
    it entered the home through the teachings of somebody with a professionalization
  • 67:03 - 67:06
    and certain sort of things attached to that.
  • 67:06 - 67:07
    More of that in the book.
  • 67:08 - 67:15
    Okay thanks every, again there are books. I'll just say there are books for purchase at the back of the room
  • 67:16 - 67:20
    and thank you so much for coming out. Liz and Meryl and Ryan will be here.
  • 67:20 - 67:23
    A round of applause for our guests. [Audience applauses].
Title:
Can We Talk?: An Open Forum on Disability, Technology, and Inclusion
Description:

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

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Video Language:
English
Team:
Captions Requested
Duration:
01:07:40

English subtitles

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