The Disability Conversation | Ben Myers | TEDxOStateU
Summary
TLDRBen Myers, born with Moebius syndrome, shares his experience as a disability advocate. He recounts his first advocacy presentation to his Boy Scout troop, highlighting the initial silence and subsequent flood of questions, emphasizing society's fear and ignorance about disabilities. He criticizes the negative portrayal of disabilities in media and everyday language, including the use of slurs and 'inspiration porn.' Myers urges for more positive and inclusive conversations about disabilities, suggesting the use of neutral terms like 'physio divergence' and advocating for diverse representation in media. He concludes by emphasizing the importance of initiating disability conversations to foster acceptance and accommodation.
Takeaways
- 🌟 Ben Myers, born with Moebius syndrome, has been advocating for disability awareness for seven years.
- 🎓 His first advocacy presentation was to his Boy Scout troop, aiming to help them earn the Disabilities Awareness merit badge.
- 🔍 Initially, there was an awkward silence when Ben was asked to share about his disability, highlighting the discomfort around discussing disabilities.
- 🤔 Ben realized that people are eager to talk about disabilities but often refrain from doing so out of fear of offending others.
- 🌍 He emphasizes that avoiding discussions about disabilities can lead to ignorance, fear, prejudice, and misinformation.
- 🚫 Ben criticizes the negative portrayal of disabilities in the media, including the use of disabilities as insults and the 'supercrip' trope.
- 📚 Jack Nelson's book identifies seven negative disability tropes prevalent in the media, which contribute to the stigmatization of people with disabilities.
- 💬 Ben suggests using neutral terms like 'physio divergence' instead of derogatory or stigmatizing language.
- 🌐 According to the US Census Bureau, 57 million Americans live with disabilities, indicating the importance of inclusivity and awareness.
- 🌍 The World Health Organization reports that over 1 billion people worldwide have disabilities, emphasizing the global relevance of the issue.
- 📺 Ben encourages the inclusion of diverse disabled characters in children's shows to foster acceptance and understanding from a young age.
- 🗣️ The final message is a call to action for everyone to start the disability conversation together, promoting tolerance and accommodation.
Q & A
What is Moebius syndrome, and how does it affect Ben Myers?
-Moebius syndrome is a rare congenital condition characterized by facial paralysis and limited limb movement. Ben Myers was born with this condition, which impacts his daily life but has not stopped him from being an advocate for disability awareness and education.
How did Ben Myers' first experience with disability advocacy begin?
-Ben's first advocacy experience started when his scout master wanted the scouts to earn the disabilities awareness merit badge. Ben, being 11 years old at the time, was asked to be interviewed by his fellow scouts to fulfill one of the badge requirements.
Why was there an initial silence during Ben's interview with the boy scouts?
-The initial silence was due to the scouts' fear of asking the wrong questions and potentially offending Ben. It highlights the discomfort and lack of understanding many people have when it comes to discussing disabilities.
What did Ben learn from his experience with the boy scouts about people's attitudes towards disabilities?
-Ben learned that people are eager to discuss disabilities but often refrain from doing so out of fear of offending someone. This avoidance can lead to ignorance, fear, prejudice, and misinformation about disabilities.
What is the term 'disability tooo' as mentioned by Ben Myers, and what does it represent?
-The term 'disability tooo' is a play on the word 'ditto' and represents the idea that disabilities are everywhere and a common part of life. It emphasizes the need for open and honest conversations about disabilities.
What are some of the negative ways in which disabilities are portrayed in society according to Ben Myers?
-Negative portrayals include using disabilities as insults, the media's portrayal of disabled individuals as 'supercrips' who overcome their disabilities through sheer willpower, and the use of 'inspiration porn,' which objectifies disabled people's achievements.
What is 'inspiration porn' and why is it problematic according to Ben Myers?
-'Inspiration porn' refers to the media's practice of sharing stories of disabled individuals overcoming their disabilities as a source of inspiration. It is problematic because it implies that the worth of disabled people is tied to their ability to minimize or overcome their disabilities.
How does Ben Myers suggest we change the conversation around disabilities?
-Ben suggests using neutral terms instead of derogatory ones, avoiding the use of disability slurs, and including a variety of disabled characters in media to normalize the presence of disabilities. He also encourages more open and positive discussions about disabilities.
What is the significance of the numbers provided by the US Census Bureau and the World Health Organization in Ben's speech?
-The numbers highlight the prevalence of disabilities worldwide, with 57 million Americans and over 1 billion people globally living with disabilities. This emphasizes the importance of making disability conversations more mainstream and inclusive.
What is the main message Ben Myers wants to leave with his audience?
-Ben's main message is to start the disability conversation together, promoting understanding, acceptance, and accommodation of disabled individuals in society.
Outlines
😀 Embracing Disability Advocacy
Ben Myers introduces himself as a person with Moebius syndrome and a disability advocate for seven years. His first advocacy experience was a presentation to his Boy Scout troop for the Disabilities Awareness merit badge. Initially, the scouts were silent, but Ben's self-prompted question sparked a discussion. He learned that people are eager to talk about disabilities but often hold back due to fear of offending. Ben emphasizes the importance of discussing disabilities to combat fear, prejudice, and misinformation. He criticizes the negative portrayal of disabilities in the media and the use of disability as an insult, advocating for more rational and practical conversations about disability accommodations.
🌟 Challenging the 'Super' Trope in Disability Representation
Ben continues by discussing the 'super' trope, where disabled individuals are portrayed as overcoming their disabilities through sheer willpower, which he experienced personally when his achievement in a science fair was framed as overcoming his disability. He argues that this narrative undermines the actual value of disabled people's achievements by tying them to their disability. Ben calls for a change in language, suggesting terms like 'physioDivergence' or 'neuroDivergence' to replace derogatory terms. He also urges the inclusion of diverse disabled characters in children's media to foster acceptance and understanding. Ben concludes by emphasizing the importance of initiating conversations about disability, citing statistics from the US Census Bureau and the World Health Organization to highlight the prevalence of disability globally.
Mindmap
Keywords
💡Moebius Syndrome
💡Disability Advocacy
💡Merit Badge
💡Xenophobia
💡Inspiration Porn
💡Disability Tropes
💡Neuro-Diversity
💡Physio-Divergence
💡Slurs
💡Census Bureau
💡World Health Organization
Highlights
Ben Myers was born with Moebius syndrome, a rare birth defect.
He has been teaching disability advocacy for seven years.
Ben's first advocacy presentation was to his Boy Scout troop for the Disabilities Awareness merit badge.
Initially, the scouts were silent and unsure how to ask questions about Ben's disability.
Ben learned that people are eager to discuss disability but are often afraid of offending others.
He emphasizes the importance of talking about disability to combat fear, prejudice, and misinformation.
Ben criticizes the common portrayal of disabled individuals as 'super'克服者, implying their worth is in minimizing their disability.
He mentions the negative impact of using disability-related terms as insults in everyday language.
Ben suggests using neutral terms like 'physio divergence' instead of derogatory words.
He calls for more representation of disabled characters in children's media to foster acceptance and understanding.
According to the US Census Bureau, 57 million Americans live with disabilities.
The World Health Organization estimates 1 billion people worldwide have disabilities.
Ben encourages starting conversations about disability to promote tolerance and accommodation.
He highlights the need to move away from pity-based discussions and towards practical, rational dialogues about disability.
Ben shares a personal experience of being labeled as 'overcoming' his disability, which he argues is not the full story.
He discusses the concept of 'inspiration porn', where disabled individuals are objectified for inspiring non-disabled people.
Ben concludes with a call to action for everyone to start the disability conversation together.
Transcripts
[Music]
[Applause]
hi my name is Ben Myers I was born with
a rare birth Effect called Mo
syndrome I've been teaching disability
advocacy for seven years now the first
time I got to give a disability advocacy
presentation was to my boy scout troop
my scout master wanted to help the
scouts get some of the rarer merit
badges out there amongst them
disabilities awareness two of the
requirements in that merit badge
involving interviewing a person with a
disability to find out how the
disability impacts their daily lives my
scout master to realize hey why not ask
Ben he's this 11-year-old kid that'll
work
right I was ecstatic little 11-year-old
me had never had such an opportunity and
I couldn't wait to hear what awesome
questions all my best friends had to ask
me about my disability about something
so important to
me we get to the meeting and we go
through all the requirements for the
other Badges and we finally get to the
interview the scout master introduces
the activity I go up to the front of the
room waiting to hear all these great
questions waiting to participate in such
an important
discussion Dead
Silence maybe they Mr our Q didn't look
like it so stubborn 11-year-old me knew
that to get this requirement they needed
to do the this interview and to get the
Merit beds they needed to do this
requirement so stubborn 11-year-old me
asked myself a question hey Ben what's
wrong with your hands well let me tell
you after that all these questions
started rolling in I learned something
that day uh people are itching to talk
about disability but they can't and
maybe they're doing it out of fear that
they're going to offend someone but this
disability tooo as I like to call it is
everywhere it's everywhere a very
familiar situation to just about anyone
with a visible disability is the little
kid coming up and asking hey what's
wrong and the parent hastily russing
over saying you can't say that that's
rude but we are a very
xenophobic race we fear that which is
foreign to us so if we remain ignorant
if we can't talk about something
then we open ourselves up to fears and
to Prejudice and to
misinformation remaining silent about
disability is not helpful it is
detrimental of course we already have
some disability conversation out there
already but it is
negative when when I say negative I want
to clarify there's a difference between
saying oh you have this disability that
means you have these difficulties how
can we be accomodating that's a very
rational practical discussion and then
they're saying oh I'm so sorry you have
these disabilities oh I'm so sorry
you're such an
inspiration when I say negative that's
what I'm talking about that is not
helpful there's several ways in which we
have these negative disability
conversations one is how often often we
use disabilities as insults a few
obvious ones come to mind but what about
some of the rare ones to think about the
ones that come up in our day-to-day
conversations how often do you call
something you don't like crazy stupid
idiotic
insane these are all
slurs and yet somehow we find that it is
okay to say them
why there's also Al a very prevalent
negative portrayal of disabilities in
the media in his book the disabled the
media and the information Age Jack a
Nelson identifies these seven negative
disability tropes that are in just about
everything with people with disabilities
these are all mostly self-explanatory my
personal favorite is the second one the
disabled person as the super this
is where through SE willpower the
disabled person person is able to
overcome their disability and that
sounds like a great narrative except
what you're doing is you're telling the
disabled that their success stories that
their worth is all about the
minimization of their
disability and this happens not just in
fiction but everywhere have you ever
seen those Facebook posts where someone
says wow this person with this
disability can do these things what's
your excuse
that's inspiration porn Sheila young and
her Ted Talk actually talked about that
if you're looking to learn more I myself
have had the super uh Trope put on
me in uh seventh grade I made it to the
state science fair and the local paper
reported about it and in the paper they
said that I had overcome my disability
to make it to the state science
fair my disability didn't really have a
bearing but because I was disabled
because I was disabled my success story
had to be super this is everywhere
and it doesn't
help we can fix this all of us everyone
in this room can do things to fix it
let's not use words like disabled or
handicapped or crippled let's use
different words words with neutral
etymologies and neutral connotations
let's come up with a word like physio
Divergence
the you joke but the uh mental
disability Community is already starting
to adopt the word neuro
Divergence let's do this let's take
these disability slurs out of our
conversation let's not use them as an
insult because disability is not an
insult let's start start talking more
about disability and why shouldn't we
according to the US Census Bureau there
are 57 million Americans living with
disabilities that's more than 2.5 times
the population of
Australia the World Health Organization
says that there are 1 billion people
worldwide living with
disability that's more than three times
the entire population of the United
States three times America America that
we are not talking about let's talk
about this let's put disabled characters
a wide variety of them in our kids shows
so that our kids grow up around
disability and can be so much more
tolerant and accepting and accommodating
than we ever
were but most of all what I want to
leave you with is this let's start the
disability conversation
together thank
you
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