Translator: Iryna Abramidze Reviewer: Theresa Ranft
My parents came here from Vietnam in 1975.
They came in the aftermath of a war,
which many Americans disapproved of at the time,
so they tried hard not to rock the boat.
They had me some years later,
actually right here in Southern California,
and they tried to raise me
with the same Asian values that they were raised with:
meekness, humility, and obedience.
And they taught me not to complain.
When I would grumble about having a mean bus driver in elementary school,
my parents told me stories about how they had to walk to school
for miles and miles through the snow, carrying loads of books on their backs.
And my smartass response was,
"I don't think it snowed in Saigon, Mom and Dad!"
(Laughter)
When I would complain that I couldn't go outside
to play with my friends
and instead had to stay indoors and work on 5th-grade math problems
when I was like in 2nd grade,
my parents said they couldn't go outside at all
because the Vietcong were bombing their cities.
So I learned to just stop complaining,
and I just shut up.
I actually came here today ...
my husband says - if you ask him - that I complain a lot.
So he has a whole different take on this story.
It was, in fact, his idea that I come here today
and complain to all of you instead
because I think he was tired of listening to me complain at home!
So, here's my chance. I'm going to stand up here
and complain to all of you and hope that you listen.
So here I am, and here are my grievances.
Gripe number one: Shopping sucks when you're blind.
(Laughter)
The nature of the business I'm in, I do a lot of public speaking,
and I have my own cooking show, called "Four Senses,"
so I'm in the public eye, I'm in front of people,
I'm in front of cameras a lot of the time,
and I have to care about how I look.
Let me dispel a myth for you, all of you here, right here and right now,
that just because I can't see how I look doesn't mean I don't care how I look.
And, you know, I wish I could not care.
I mean, if I had my choice,
I'd be up here right now in my pajamas and barefoot probably giving this talk.
But I do have to care; it's socially acceptable for me to care.
Unfortunately, I'm not rich enough yet
to have my own hair, makeup, and wardrobe team
follow me everywhere I go,
so most of the time,
I'm doing my own hair, putting on my own makeup
and dressing myself.
So, did I do okay today?
(Laughter)
(Applause)
Before I lost my vision,
I read a lot of fashion magazines, and I loved to shop.
These were habits that I picked up from my mom,
who actually turned an entire room of our 3-bedroom home
when I was growing up
into her own personal walk-in closet.
And, of course, after I lost my vision, it wasn't that I stopped loving to shop,
but that I had to figure out a new way to do it.
Malls were crowded,
I was afraid of escalators.
As you can imagine, that's a challenge for someone who can't see,
so I kind of avoided malls altogether.
And luckily, at the time that I was losing my vision,
cybershopping became much more mainstream.
But, unfortunately, for me,
not being able to see
the two-dimensional nature of online shopping,
not being able to feel the fabric
or touch the cut of a dress and know what it looks like,
it was hard for me to figure out what it was that I was "looking at."
Neuroscientific research actually shows that when a person loses their vision,
their brain reorganizes itself
so that the other four senses become more dominant.
So, for example,
when a person learns to read Braille, the part of the cerebral cortex
that once received and processed nerve impulses from the eyes
rewires itself so that it starts receiving and processing nerve impulses
from the fingertips.
A lot of people asked me, after I lost my vision,
if my senses have heightened
and if that's how I've been able to cook on MasterChef
and how I have this extraordinary palate, like Gordon Ramsey says.
And, in actuality, I wouldn't say that my senses are better per se,
but I will say that I'm much more sensitive
to what my ears, my nose, my tongue, and my fingers take in,
because this is the new paradigm
through which I have to take in this world.
So, because I can't see or hear or smell
or taste or touch the clothes through the computer monitor,
online shopping still remains a challenge.
There's often times
when I would use my screen reader to read item descriptions,
and they're not very clear or very helpful.
The worst is when a brand would use very convoluted names for their colors,
like "mildew" and "LSD."
How am I supposed to know what that is?
Like, I'm picturing a rainbow, I don't really know.
So, that's difficult.
My wish is that developers and programmers would follow good programming practices
and use proper HTML and tag it, so that I can, for example,
use my screen reader to navigate through headers
and find this checkout button.
If you're in e-commerce, you know exactly how important it is
for a consumer like myself to be able to find and click on that checkout button.
The Rehabilitation Act of 1973 was amended in 1998 to include Section 508,
which is a mandate that required federal agencies
to make their electronic and information technologies accessible
to people with disabilities.
This was 17 years ago - think about that.
Seventeen years ago,
and it was only required of the government.
I feel like this mandate should be expanded
to make it required of everyone, not just the government.
This conversation that we've been having a lot in the media lately about equality -
this needs to include the dialogue with people with disabilities.
You know, I think about that a lot,
and I also think about how we would be upset, for example,
if a particular business barred women or the LGBT or Asians
from shopping at their stores.
It's kind of the same thing,
if you put yourself in my shoes right now as a visually impaired person.
I'm barred from many online stores because it's not accessible.
I'm barred from viewing many websites or using a lot of web apps,
simply because they're inaccessible.
So that was my first gripe.
My gripe number two is entertainment,
and television sucks when you're blind.
So, ever since being on MasterChef,
a lot of people tell me that I'm like the real-life Daredevil.
For those of you who don't know,
Daredevil is a superhero character who is also blind.
I haven't read a comic book in years,
but when Daredevil came out on Netflix last month,
I decided to sit down and try to tune in
because I kind of wanted to see
who this dude was that everyone kept comparing me to.
So I tried to watch it,
and it was difficult for me to follow because there's a lot of action going on.
It was hard for me to figure out whose voice belonged to whom,
and I was annoying my husband because I kept talking over the show.
And it was just very difficult.
I wasn't the only one that noticed this irony.
The fact that here I was, someone who's blind,
and I couldn't follow or enjoy a show about another person who is blind.
There was a petition, that I'm sure some of you have heard about,
that was created after the season premiered,
and it was about wanting to make Netflix make the show accessible
by adding audio description.
And, fortunately, Netflix followed suit,
and they not only added audio description to Daredevil,
but to also all of its other original programming.
That's a good thing because I've been watching House of Cards,
and that's kind of hard to follow
when you're listening to dialogue and a lot of silent scenes
and you don't know what's going on.
So that's been nice.
And my show, "Four Senses," is a cooking show,
and it originally airs on AMI, or Accessible Media Inc.
And what AMI does -
it's a network that's completely dedicated
to providing television for the hearing and vision impaired,
so it makes inclusive entertainment for everyone.
And I love AMI and what its mission is and what it stands for,
but I wish that it wouldn't be
the sole responsibility of a single network
to bring inclusive entertainment for all.
I feel like this should be something
that all production companies and all networks are responsible for,
and it should be shared.
Remember that just because someone is blind
doesn't mean they don't enjoy art and pop culture.
When my friends sit down to talk about Don Draper
and what's going to happen next on Mad Men,
I want to be able to join in on that conversation as well.
So, that's my gripe number two.
So my first gripe was about making technology accessible.
My second gripe was about making entertainment accessible.
Do you guys see where I'm going here
in the theme of TED?
So before I go into my next gripe, actually,
I'm going to do a little exercise with all of you.
I want you to all put yourself in my shoes.
Close your eyes, everyone in the audience,
and don't lie to me just because I'm blind.
(Laughter)
Once your eyes are closed,
I want you to take your phone
and then try to take either a selfie or a picture of me
and Instagram it and tag me.
I'm the Blind Cook. Can you guys do it?
(Laughter)
Welcome to my world, guys!
(Laughter)
Anyone?
Alright, I'll stop you guys there,
so you don't have to be miserable this whole time.
Did anyone succeed?
Don't raise your hand, just make a sound, I can't see you.
No one? All right.
Now you know how it's like to live in my world.
So my third gripe, gripe number three:
This world is not designed to include the blind.
As you just experienced and learned,
social media is very difficult for not being able to see.
I'm actually very active on social media, that's how I stay in touch with my fans,
that's how I let people know what I'm doing.
It's difficult. Even coming here to do this talk.
You saw me walk on stage with my cane, and I was being guided.
It was hard to make sure I don't fall in these heels,
make sure I find this circular rug that I'm on,
make sure I'm facing the audience, and that's difficult.
Even traveling here to San Diego from my hometown of Houston was difficult.
Next time you're at an airport,
put yourself in my shoes.
Close your eyes and see how you can get through security checkpoint
without leaving anything behind,
or having people annoyed with you for being a little slower,
and then try to find a public restroom in the airport,
with your eyes closed.
Then try to find a stall,
try to find the toilet paper,
put the seat cover down
and find the flusher - all with your eyes closed.
You know that when you can't see, you're imagining the worst,
that everything's like covered in feces, right?
So you have to think about that, how stressful that is,
and then afterwards you try to find the sink
and then paper towel or the hand dryer.
It's all very stressful.
And even something like eating -
one of my favorite things to do
that we all have to do to stay alive and sustain ourselves.
Even that is often stressful.
When you're in a restaurant, next time, close your eyes
and see how many times you forget there's a straw in your water
and you poke yourself in the eye or the nose.
I do that all the time, and it's embarrassing.
Order some sushi and try to eat it with chopsticks
and see how often that lands on your lap instead of your mouth.
Or, try to see if you can tell which is the rice and which is the wasabi.
I've actually done that quite a few times, and it's not fun.
So these are things that I go through,
or other visually impaired people go through as well.
And it's all funny now, to me, these blindness adventures that I have,
but it wasn't always kind of a funny thing.
It took me a while to adjust to this because I wasn't born blind.
When you're young, you think you're invincible.
And I was in college at the time when I had my first experience
with optic neuritis, or optic nerve inflammation.
I was 20, and like many of you, I was in college.
And at the time, I didn't think that I would ever go blind,
or even if I did,
I didn't think it would be something that would happen until I was in my 80s.
And here I was, 20 years old in college,
and I thought that this wasn't really fair.
I thought I was exempt from these sorts of things.
I thought if anything in college,
I should only be worrying about boys and final exams
and which part of my body to pierce next,
not something as serious and chronic as blindness.
But here I was, 20 years old, losing my vision.
And I was put through a battery of tests,
from MRIs to spinal tap to a lot of blood work,
to try to figure out what was wrong with me.
The doctors took a long time to figure it out.
At first, they thought I had multiple sclerosis,
so I was put on a treatment plan
that involved daily injections that I had to give to myself.
Then they noticed that it didn't work,
because regardless of the treatments,
I was still having attack after attack.
It wasn't until I was 23 years old
that I was officially and correctly diagnosed
with neuromyelitis optica, or NMO.
NMO is a rare autoimmune disease that affects the neurological system,
primarily the optic nerves and the spinal cord.
I've been fortunate that I've been relapse-free for about eight years,
once the doctors figured out that I had NMO
and put me on a treatment plan that worked for me.
But before that, before my NMO was stabilized,
I went through a lot of attacks.
Year after year, month after month, there was just attack after attack.
My worst one happened in 2002,
and I was going over a course of four days from being a fully functioning adult,
being able to walk and do everything, seeing okay for the most part,
I think, at the time,
like one of my eyes was bad but the other one was fine.
I went from being a fully functioning adult
to completely paralyzed from my neck down.
It was a hard time for me to understand
because I went from fully functioning
to all of a sudden being this adult mind that was trapped in an infant's body.
No matter how hard I willed for my big toe to move, it wouldn't.
It was frustrating for me, to say the least,
especially because I've been such an independent person all of my life.
It was hard.
I was in the hospital, and I was put on a lot of drugs.
The doctors put me on seizure medication because my muscles were cramping a lot.
They put me on morphine because I was in pain,
and they put me on corticosteroids, which helps with inflammation,
and they were trying to figure out how to stop this attack.
I underwent a lot of physical and occupational therapy.
The worst was that, at the same time,
I was still experiencing bouts of optic neuritis.
So there were weeks at a time when I would be laid up in bed
and unable to see,
unable to move, and unable to sleep
because all the drugs I was on were causing insomnia.
So I had a lot of time to think, and that can be very scary.
I thought about how things that once seemed so simple -
like being able to open a door,
or use the restroom by myself -
now had become so suddenly monumentally difficult.
I thought about how my priorities changed overnight,
how I went from wanting a better job, more money, a faster car,
to wishing that I could just get up from my bed
and walk to the fridge and pour myself a glass of water.
I remember thinking distinctly
that this was all I wanted to be able to do with my life again.
It took me nine months to recover from this spinal inflammation.
And I, fortunately, did recover.
As you could tell, I walked here on stage just fine,
but my vision was obviously a different story.
My vision continued to deteriorate over time.
In 2004, it decreased to a level where I had to stop driving,
and I started magnifying the font on my computer to 35pt.
So you can imagine that's like pretty big, right?
But that's how I would read print.
And I had to contrast the font
so that it would be a white font on a black background.
In 2007, my vision deteriorated to the level
where I could no longer walk around
without assistance from a sighted guide or a cane.
I had to stop reading print altogether
and start using a computer screen reader
to feed me audibly everything on my computer screen, my emails, etc.
So my vision today is what the doctors call
"counting fingers in both eyes."
So I don't even register on the visual acuity scale.
I would say that, depending on the lighting,
I can maybe count fingers at a distance of about maybe 10 to 12 inches.
And I best describe it as
if you were to imagine coming out of a really hot shower
and you look into that steamy, foggy mirror - that's kind of what I see.
So I see a little bit of color, a little bit of shape, but mostly shadows.
So that's my world and that's what I see.
Up here, I stand here, and I know there's like a bright light right here,
but I can't really see anything.
I don't really see the...
I know there's a circle rug
because I was able to come up here earlier and feel it out,
but I don't see much -
which kind of helps doing public speaking
because I don't see how massive the audience is,
so I'm a little less scared.
But that's my vision and that's what I see.
So just try to put yourself in my shoes and try to live life that way.
Try to cook, go about your daily business,
work on your papers, or do your writing.
It's not fun all the time,
but I've been fortunate that I've been able to adapt quite well.
NMO is something
that has affected me a lot, obviously.
And I stand here and tell you this story,
and it's rough, it's a personal story of mine,
and I struggle with it sometimes to just tell this story.
It makes me nervous
because I don't know how people will take it,
but I want you to remember that NMO and blindness or disabilities
are not things that everyone is exempt from.
And life is very difficult sometimes,
life is ever-changing and aging is inevitable.
And I want you all to think about -
I know that you may not be able to relate to my gripes that I have up here today
and relate to my own personal life experiences,
and I know you probably can't relate to my blindness,
but remember - and this may sound a little bit depressing -
but remember that we're all not just abled or disabled,
but we're all just temporarily abled,
because like I said, aging is inevitable,
life is inevitable, and life is surprising,
and disability or blindness can affect our parents, our grandparents,
our children, our best friends, and ourselves.
So when that time comes,
don't you want this world
to kind of be ready and designed for you?
Okay, I'm not going to keep going depressing, okay?
So, I'm going to try to pick it up a little here.
My husband actually asked me recently,
if I could have my vision back
but I had to go back to living the life that I had before,
would I?
And the answer that may surprise you
is I said no.
And the reason I say no is because NMO and blindness have taught me
that it's okay to ask for help sometimes.
More often than not, people are always willing to help.
NMO and blindness have taught me that
it's okay to do what you love and to do what you're good at,
and I've been given that opportunity, fortunately.
And NMO has taught me that you should live life fearlessly.
I've actually gone skydiving
and picked up snowboarding after I lost my vision.
My philosophy in life now is that you really can't fear what you can't see,
so it's taught me to be fearless.
And it's taught me that I should live life unapologetically.
Most of all, though,
I think what disability has taught me is compassion.
Being an only child, growing up, I was selfish.
Now I am much more compassionate,
and it's given me this platform to advocate
for women, for ethnic minorities,
for artists,
and for the differently abled.
And I'm fortunate and I'm blessed to be able to stand here
and talk to all of you about those issues that I think we will all face one day.
Like I said, I know this doesn't necessarily affect a lot of you now,
but like I said, we're all just temporarily abled,
so remember that.
I'm here to be able to advocate for that
and to make you guys all think about what it's like to live in my shoes.
And when you see people,
try not to think of them as disabled, people like me who are visually impaired,
but think of them as "differently" abled.
And I find that...
another thing that I've really learned from my NMO and my blindness
is that, at the end of the day, we are all different on the outside,
but we're very much the same on the inside,
and we all have the same human desires
to be loved and to be respected and to be understood.
And so, in some way, in one way or another,
we are all in search of this inclusivity,
and I think that's important to remember that,
that we're all in search of inclusivity,
and we're all humans.
My parents came here to the United States with hope
because they were hopeful that their lives would be better.
And while I'm sure that didn't include having a daughter
that would be eventually diagnosed with NMO or lose her vision,
I am also willing to bet
that they didn't expect to have a daughter win MasterChef,
and to be standing up here one day to give a TEDx Talk.
So I guess it all evens out in the end, right?
But my parents were hopeful,
and they instilled hope in me,
and that was probably the most important value
that they instilled in me.
And I'm still hopeful,
in spite of all the gripes that I've given all of you today,
standing up here.
I'm hopeful that my talk will motivate you
to see the world as the blind do,
and my hope is that you too will see that it's an idea worth spreading.
Thank you.
(Applause)