The Disability Conversation | Ben Myers | TEDxOStateU

Summary

Ben 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

00:00

😀 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.

05:01

🌟 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.

Keywords

💡Moebius Syndrome

Moebius Syndrome is a rare congenital condition characterized by facial paralysis and limited eye movement. In the script, Ben Myers mentions being born with Moebius Syndrome, which is the central theme of his advocacy and personal story. It's the reason why he has a unique perspective on disability and its impact on daily life.

💡Disability Advocacy

Disability Advocacy refers to the act of supporting and promoting the rights and well-being of people with disabilities. Ben Myers has been involved in this for seven years, as he educates others about the experiences of living with a disability and works to improve societal understanding and acceptance.

💡Merit Badge

A Merit Badge is an award given by organizations like the Boy Scouts to recognize achievements in various areas. In the script, Ben recounts his first advocacy presentation, which was to help scouts earn the Disabilities Awareness Merit Badge by interviewing him about his disability.

💡Xenophobia

Xenophobia is the fear or dislike of that which is perceived to be foreign or strange. Ben uses this term to describe society's fear of disability, which leads to ignorance, prejudice, and misinformation. This fear is a barrier to open and accepting conversations about disability.

💡Inspiration Porn

Inspiration Porn is a term used to describe media that portrays people with disabilities as inspirational simply because they exist or accomplish everyday tasks. Ben criticizes this portrayal as it minimizes the person's overall worth to their ability to overcome their disability, which is exemplified in the script when he talks about being featured in a local paper for 'overcoming' his disability to achieve in a science fair.

💡Disability Tropes

Disability Tropes refer to stereotypical or clichéd representations of people with disabilities in media and society. Ben mentions seven negative disability tropes identified by Jack Nelson, which include the 'supercrip' narrative where a disabled person overcomes their disability through sheer willpower, thus perpetuating a harmful narrative.

💡Neuro-Diversity

Neuro-Diversity is a concept that suggests that neurological differences, such as those associated with autism or ADHD, are as natural and valuable as human diversity. Ben humorously suggests using terms like 'neuro-divergence' to replace derogatory terms, indicating a shift towards more positive and accepting language around neurological differences.

💡Physio-Divergence

Although not a widely recognized term, 'Physio-Divergence' is used by Ben as a hypothetical example for a new term to describe physical differences in a neutral and positive way, similar to 'Neuro-Diversity'. It represents the idea of embracing and normalizing physical differences rather than viewing them as deficits.

💡Slurs

Slurs are derogatory terms used to insult or demean individuals or groups. Ben discusses how disability-related terms are often used as slurs in everyday language, which perpetuates negative attitudes and misunderstandings about disability. He advocates for removing these slurs from our conversations.

💡Census Bureau

The Census Bureau is a government agency that collects and provides demographic data. Ben cites the US Census Bureau to highlight the significant number of Americans living with disabilities, emphasizing the importance of including and discussing disability in society.

💡World Health Organization

The World Health Organization (WHO) is a specialized agency of the United Nations responsible for international public health. Ben uses WHO's statistics to emphasize the global prevalence of disability, urging for a more inclusive and informed dialogue about disability.

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