Changing The Way We Talk About Disability | Amy Oulton | TEDxBrighton

Summary

The speaker shares her personal journey with disability, addressing the misconceptions and stereotypes often imposed on disabled individuals. She discusses the challenges of navigating a world not designed for accessibility, the complexities of public perception, and the importance of open conversations about disability. Her experiences, from overcoming physical barriers to traveling in Southeast Asia, emphasize the need for societal change towards inclusivity and the recognition of disabled people's right to participate fully in life.

Takeaways

• 🎭 The speaker shares personal experiences of feeling judged and hyper-visible due to her size and disability, highlighting the complexities of public perception.
• 🗣️ People often make unsolicited comments on her body and disability, framing them as compliments, which puts her in a difficult position to respond without seeming ungrateful.
• 🚶‍♀️ The speaker recounts instances where she was congratulated for participating in everyday activities, implying that her presence was surprising or commendable due to her disability.
• 👗 Despite societal stereotypes, the speaker has a rich social life, hobbies, and a unique sense of style, which challenges the preconceived notions about disabled individuals.
• 🏆 She emphasizes the importance of recognizing individual achievements without reducing them to overcoming disabilities, as her accomplishments are part of her life, not just a battle against her condition.
• 🌏 The speaker's story of backpacking in Southeast Asia demonstrates that with creativity and determination, one can still pursue dreams and passions despite physical limitations.
• 💡 Media portrayals of disabled people are often limited to extremes, either as superheroes or as pitiable figures, which fails to capture the nuanced reality of living with a disability.
• 🔍 The speaker calls for a more inclusive and realistic representation of disabled individuals in society, advocating for a spectrum of experiences rather than binary categorizations.
• 🤝 She encourages open conversations about disability and accessibility, suggesting that asking questions and acknowledging potential barriers can lead to more inclusive environments.
• 🚧 The speaker discusses the practical barriers she faces, such as stairs and lack of ramps, and the need for advanced information to ensure accessibility.
• 🌐 She envisions a utopian world where disability is mainstream and does not inhibit freedom, advocating for a collective approach to making accessibility a priority.

Q & A

What was the speaker's weight at the age of 21?

The speaker weighed 21 stone at the age of 21.

How did the speaker feel when they were larger?

The speaker felt that the whole world was looking at them and thinking negative things. They were self-conscious about eating in public due to fear of being judged.

What changed in people's behavior towards the speaker when they started using a wheelchair?

People started treating the speaker's body and disability as a subject open for public discourse, often making unsolicited comments.

How do the comments from others make the speaker feel?

The comments often make the speaker feel both hyper-visible and invisible as a person, reducing them to a selection of stereotypes based on presumptions about their life.

What was the speaker's experience at a club?

The speaker was told it was amazing to see them in the club, implying that people like them don't often go out having fun, which was not a compliment but a reflection of societal assumptions.

What was the speaker's achievement after completing their education?

The speaker fought through years of severe dislocations, extensive surgery, and poor mental health to complete their A-Levels and degree.

What was the speaker's most impressive achievement according to most people?

Most people think the speaker's most impressive achievement was going backpacking across Southeast Asia for three months.

Why did the speaker feel that their achievements are not an indication of overcoming their disability?

The speaker believes that their achievements are part of learning to live alongside their disability and mental health, rather than overcoming them.

How does the speaker describe the media's portrayal of disabled people?

The media often portrays disabled people as either superheroes who have overcome their disability or as pitiable figures, which can be harmful and misleading.

What does the speaker suggest for a more inclusive society?

The speaker suggests imagining disabled people in the middle of the action and having conversations to remove barriers, making access a collective responsibility.

What is the speaker's view on discussing disability?

The speaker believes it's okay to ask questions and acknowledge potential barriers, as these conversations are necessary to open up the world to those currently excluded.

Outlines

00:00

🤔 Perceptions of Disability and Public Judgement

The speaker reflects on the misconceptions and judgments they face due to their weight and disability. They recount feeling scrutinized in public, with others assuming negative thoughts about their eating habits and lifestyle. The speaker also discusses the shift in public interaction after using a wheelchair, where unsolicited comments disguised as compliments put them in an awkward position. They share experiences of being seen as an anomaly in social settings, with people expressing surprise at seeing them enjoying life, which highlights the stereotypes and assumptions made about disabled individuals.

05:02

🌟 Overcoming Barriers and Challenging Stereotypes

This paragraph delves into the speaker's journey to overcome personal fears and societal barriers associated with their disability. They recount their first solo outing in a wheelchair and the sense of achievement it brought, despite the anxiety and challenges. The speaker also shares their incredible experience of backpacking in Southeast Asia, emphasizing the importance of creativity and determination in achieving one's goals. They refute the media's portrayal of disabled individuals as either superheroes or pitiable figures, asserting that disability is not binary and exists on a spectrum of experiences.

10:02

🔍 Navigating Identity and the Complexity of Disability

The speaker discusses the multifaceted nature of their identity, where disability is just one aspect among many, such as being a white, left-wing feminist who is gay. They address the discomfort some people feel when discussing disability, noting that while it's important to be sensitive, it's also necessary to have open conversations to accommodate the needs of disabled individuals. The speaker calls for a utopian society where disability is mainstream and not a source of surprise or discomfort, advocating for proactive measures to ensure accessibility and inclusion.

Keywords

💡Disability

Disability refers to a physical or mental condition that limits a person's movements, senses, or activities. In the video, the speaker discusses her personal experiences with disability, emphasizing that it is an integral part of her identity, not something to be overcome. The script illustrates this through her recounting of various life events and societal reactions to her disability.

💡Stereotypes

Stereotypes are widely held but fixed and oversimplified ideas about a particular type of person or thing. The speaker addresses how people often reduce her to a set of stereotypes based on her wheelchair use, which fails to capture the complexity and individuality of her life and experiences.

💡Invisibility

In the context of the video, invisibility refers to the feeling of being overlooked or not recognized as a full person due to one's disability. The speaker describes how comments from others can make her feel both hyper-visible (as a disabled person) and invisible (as an individual with her own unique experiences and identity).

💡Accessibility

Accessibility pertains to the design of products, devices, services, or environments for people with disabilities. The script highlights the importance of accessibility in allowing the speaker to participate fully in society, using examples such as the need for ramps or lifts to navigate spaces that are not wheelchair-friendly.

💡Wheelchair

A wheelchair is a seat mounted on four wheels, used for mobility by people who are unable to walk long distances or at all. The speaker's use of a wheelchair is central to the narrative, as it is both a tool for independence and a symbol of the challenges she faces in a world not designed for her needs.

💡Public Discourse

Public discourse refers to the discussion of issues within public view, often implying a broader societal conversation. The speaker mentions how her disability became a subject of public discourse when people felt entitled to comment on her condition, which she found intrusive and inappropriate.

💡Judgment

Judgment in this context refers to the forming of an opinion or evaluation by discerning and comparing. The speaker expresses concern over the judgment she perceives from others regarding her food choices and activities, which contributes to her feeling of invisibility as an individual beyond her disability.

💡Participation

Participation denotes the act of being involved in something. The video emphasizes the right of disabled individuals to participate fully in society, with the speaker advocating for a collective approach to ensure that accessibility is a priority for everyone.

💡Barriers

Barriers are obstacles or difficulties that make it harder to achieve something. The script discusses various barriers the speaker encounters, such as physical barriers like stairs and social barriers like people's attitudes and assumptions about her capabilities.

💡Media Representation

Media representation refers to how individuals or groups are portrayed in the media. The speaker criticizes the media for its tendency to either portray disabled individuals as superheroes who have overcome their disabilities or as pitiable figures, neither of which accurately reflects the diverse realities of disabled people's lives.

💡Utopia

Utopia is an imagined place or state of things in which everything is perfect. The speaker envisions a utopian world where man-made barriers do not exist, and disability is so mainstream that it does not surprise or discomfort people, allowing for full societal inclusion and participation.

Highlights

The speaker discusses the feeling of being hyper-visible and judged by others due to their weight and subsequent use of a wheelchair.

People treat the speaker's disability as a subject open for public discourse, causing discomfort.

The speaker recounts an experience of being praised for being at a club, highlighting society's surprise at seeing disabled individuals enjoying social activities.

The speaker shares the awkwardness of receiving backhanded compliments about their appearance and lifestyle due to their wheelchair use.

The speaker emphasizes the individuality of their life and disability, rejecting stereotypes and the idea of being reduced to their wheelchair.

The challenges of mobility and independence are highlighted through the speaker's recount of their first solo outing in a wheelchair.

The speaker describes their personal growth and increased confidence in managing their disability.

The impressive achievement of going backpacking across Southeast Asia despite physical limitations is shared.

The speaker reflects on the necessity of relying on others for help and the discomfort it initially caused.

Creative problem-solving is celebrated as a means to achieve personal goals, even with a disability.

The speaker disputes societal perceptions that disabled individuals have 'overcome' their disability or are to be pitied.

The media's portrayal of disabled people as either superheroes or pitiable figures is critiqued.

The speaker calls for a more nuanced understanding of disability, recognizing the spectrum of experiences.

The discomfort some people feel when discussing disability is addressed, with a call for open and respectful conversation.

The speaker advocates for a world where disability is mainstream and does not surprise or discomfort people.

The importance of asking questions and acknowledging potential barriers to participation is emphasized.

The speaker shares an example of how to have a helpful conversation about accessibility on public transport.

The speaker concludes with a call to action for society to take collective responsibility for making access a priority.

Transcripts

[Music]

thank you

by the time i was 21 i weighed 21 stone

his photograph of me cooking something

that looks like it was going to be very

healthy

when i was larger i felt that the whole

world was looking at me and thinking

negative things i would never eat food

out alone in public because i decided

that whatever i was eating

someone was probably judging me if i was

eating a salad

they were thinking yeah that's not what

she eats every day is it

and if i was eating a chocolate bar they

were thinking

of course she's fat eat a salad

for the most part people didn't

comment on my weight publicly but when i

started using a wheelchair a weird thing

happened

people started treating my body and my

disability like it was a

subject open for public discourse

the problem with these comments is

they're very often

dressed up as compliments forcing me

into a position where

i have to decide how to engage with this

person who's obviously not

meaning to be offensive to me

people regularly come up to me on nights

out and say

it is amazing to see you in this club

which was only legitimate at the time i

swooped to the front of the long cure

revenge

two minutes before the cheap entry

deadline and got

14 of my friends let in to carry me up

the several flights of stairs

although on that occasion i wasn't

actually congratulated for being in a

seemingly very inaccessible

club i was told that you don't see

people

like me out having fun very often

i was a bit worried that you guys might

think that i don't know how to have fun

so there i am goofing around at a

wedding just in case anyone needed proof

of that

it's a regular thought one of not seeing

me out

or being impressed by my presence

there was one man who on three separate

occasions

in on the bus route back to my house in

new cross

insisted on congratulating me for

getting out

and not letting it hold me back

i can only assume that the it he was

talking about on the third

occasion was the very intense hangover

that caused me to get off the bus when i

could see my front door

and throw up into a bin

another favorite was a lady who came up

to me in the supermarket

and she bent right over me and she said

you're very stylish

which was nice until she topped it off

with

for someone in a wheelchair which did

undermine the compliment a little bit

it seems to come as a surprise to these

people that i have

hobbies and a social life and

i love of dressing myself in shirts my

friends said look like the inside of a

90s caravan

the problem with these kind of comments

is they cause me to feel both hyper

visible

and also completely invisible as a

person

when people project their ideas of what

they

think disability is on to me they

reduced me to a selection of stereotypes

based on the things that they've

presumed about my life

but my life and my disability is

individual to me and there are so many

things that you wouldn't know about me

just from looking at my wheelchair

people don't know that i fought through

years

of severe dislocations and

extensive surgery and very poor mental

health to

complete my a levels and my degree

and the after uni i had to move home

be careful by my mum and over three

years i wouldn't go out alone

the first time i went out by myself in a

wheelchair i was still at university in

bristol

and i'd figured out that if i parked

between the two entrances of cabot

circus

that i could take the slope down on one

side to the shops that i wanted to go to

get the lift back up to the next floor

and follow the slope down on the other

side to get back to my car

whilst doing the absolute bare minimum

of wheeling

i was so proud of that achievement but

it had taken

weeks of talking myself into and

powering through the fear that if

something didn't

quite go to plan then i was just going

to be stuck in the middle of the

shopping center

or have to ask a stranger for help

exposing my vulnerabilities

now when i look back on that time i can

see

just how far i've come in my journey to

manage my disability

and live the life i want to

which leads me on to what most people

think is my most impressive achievement

going backpacking across southeast asia

for three months it meant that like when

i first became disabled i had to accept

that i was going to need to rely

on help on someone else for help for

everything

which felt like an uncomfortable step

backwards at times

but i got to experience things i never

in a million years thought i would get

to

here i'm scuba diving whilst everyone

else was gracefully easing through the

water

i was awkwardly doggy paddling around

with my floppy paralyzed foot just

trailing behind me and

here i wheeled into a river to

wash an elephant with a tiny bucket

discovering that with my weak arms and

my low height in the wheelchair

that i really just gave the elephant

very clean knees

i also rode on the back of motorbikes

and here i'd rented one with a sidecar

for stability

unfortunately i discovered that keeping

my legs away from hot exhaust pipes is

not a skill

i possess and came home with two new

scars to add to my extensive collection

that trip is probably one of the best

things that i can tell people about

disability that you can still achieve

the things you want to

you just have to get creative about how

you do it

so when people tell me it's amazing to

see me out

they could well be right because on many

days

the fears i had the first time i went

out alone in a wheelchair

are still there and i may have battled

pain and anxiety and fatigue to get

there

taken inaccessible or long-winded forms

of transport

or had to gain access by being carried

like an emperor

but if they think it's impressive

because my life is

otherwise meaningless and unfulfilled

they're completely wrong

none of these achievements are an

indication that i've overcome my

disability

my disability and my mental health is

not something i'm trying to overcome

it's something that i'm learning to live

alongside

but our media is always really keen to

categorize disabled people

this as a best-case scenario

we're painted as superheroes who have

overcome our disability

this headline from a real newspaper says

superhuman and then some five athletes

who symbolize

triumph of will over adversity

or we're painted as sad people to be

pitied

just two faulty genes derailed my life

a mother on the great losses and lessons

of her daughter's disability

or possibly most harmfully

the benefits grounded rhetoric

workshy map of britain revealed

thousands of incapacity benefit

claimants found to be capable of working

i'm none of these things and i'm a bit

of all of those things

disability isn't binary and most people

fall somewhere into the spectrum of gray

on a bad day i struggle to look after

myself properly

and on a good day i bum shuffled up a

waterfall for two hours in lao

so what's my headline if you had to give

me one

is it amazing wheelchair woman

wheelchair user overcomes barriers to go

travelling or is it

sad disabled woman tries to escape her

miserable life by going to southeast

asia for three months

or woman claims to use wheelchair but is

seen halfway up a waterfall

[Laughter]

there are things that you can easily see

about me

like i'm white female at about 30.

and there are things that you can

probably quite quickly figure out when

you talk to me

like i'm left-wing feminist and gay

and then there are things that you

wouldn't know about me

unless we were having a conversation and

i told you like

i hate coriander

i put cold water in the top of my tea

and i collect antique dog photographs

my disability is part of my identity in

the same way that all those other things

are

but this is where people start to feel

uncomfortable because they think that

asking about my disability or

maybe even acknowledging it is rude and

that it does the thing that i'm trying

to avoid

reduces me to my disability

in many cases that is true someone

recently came up to me in a shop

and asked me what my condition was she

hadn't even said hello

and then who my specialists were

and what medication i was taking

which is a list i struggle to keep track

of myself to be honest

but we live in a world that is not

particularly well

geared up for meeting the needs of

disabled people and that means that

there will be times when that needs to

be discussed

these are two of the most common

examples of barriers that i face

things that will tip me out on my face

and stairs

so in the meantime if there are stairs

into a property

i'm either going to need a ramp or i'm

going to need help getting up those

stairs

and crucially i also need advanced

information about that because it's not

possible for me to just

assume i can independently go anywhere i

want to go

if we're talking about utopia that would

be my end goal

one where man-made barriers don't

inhibit my freedom

a utopic world for me would also be one

where the presence of disability

is so mainstream that people are no

longer

surprised by or uncomfortable about it

what i want you to do is start by

imagining disabled people in the middle

of the action

and then asking the questions to make

that happen

it's okay to ask me questions and

acknowledge that there might be barriers

that

prevent me from participating fully but

it's

only by having those conversations that

we open up the world

to a group of people who are currently

excluded from it

to give an example of the right way to

have those conversations

on london buses there's often

competition for the wheelchair space

with buggy users

and i get all kinds of reactions to my

presence

quite often i'm just completely ignored

despite the fact a giant siren goes off

when the wheelchair ramp comes down

i also have had people make a massive

scene of getting off the bus

unnecessarily

or refused to fold their buggy and share

the space with me

people also regularly do try to be

helpful but end up

moving into the space that i needed to

turn my wheelchair in

what i want people to do in that

situation is just come to where we can

have a conversation

and say is there any way that i can help

you here

that paves the way for me to explain

what help i might need

without feeling like a massive

inconvenience or a

public spectacle

when my disability makes me feel like an

inconvenience

it makes me angry but it also just makes

me want to hide in the house

access is about believing that disabled

people have a right to participation and

that each and every one of us

is responsible for that the problem is

it's a vicious cycle whilst disabled

people

act barred from accessing the world

people don't notice we're not there and

ask why

it seems like some people are

comfortable having conversations about

my disability

with me sorry to me but

they seem much less comfortable having

those conversations with me

but making those changes requires

discussions and a commitment to doing

better

when society takes a collective approach

to making access a priority it stops

becoming

solely my problem thank you

[Applause]