The Art of Self-Accommodation | Jason Anderson | TEDxUWMilwaukee

Translator: Post Production Captioning
Reviewer: Ellen Maloney What does it mean to be successful? Is success the impact that you have
on the world around you? Or is success the income that you make, how much money you earn, the kind of car you drive? Is it the difference
that you make in your lives, in people’s lives? I prefer to believe success is the impact
that you have on people’s lives. More important than success
is the journey one takes to get there. The things you learn along the way and the things that make you
into the person you are today. I feel blessed in the sense that I have a career
where I feel successful. And I feel successful in the sense that
I get to make an impact on students lives. You see, I work for the university. And at the university,
I do disability services. And I work with students
who also have disabilities and help them set up accommodation plans so that they can be
the next generation of students that enter into the workforce
and become successful adults. At the same time, as a person who was raised hard of hearing
and became deafened as an adult, I have that unique opportunity where I’m able to explain
my own personal experiences and assist students with disabilities with not making the same
mistakes that I once made. You see I’m a professional. I’m a professional at disability,
hearing loss, and deafness. I’m also a professional at failing. It’s not a bad thing
to be a professional at failing. As a matter of fact,
failure is the foundation for success. Failure is like an artist palette; full of paint and a blank canvas
in front of you. And it begins with
a single brush stroke. And as you create your piece, it builds in complexity,
in design, and in form. It blossoms. And eventually becomes a masterpiece. And my masterpiece in my life
is actually my deafness. I wouldn’t be where I am today
if it wasn’t for my deafness, and I wouldn’t change it for the world. Accommodations, the Final Frontier. (Laughter) These are the voyages of everyday people
and some of them have disabilities. Watching this show when I was growing up
was an integral part of my upbringing. It sounds a lot weirder
when I say that out loud. (Laughter) There was any number of reasons for that. First and foremost was the sense
that it was one of the various shows that had closed captioning consistently. As a person who was hard of hearing
growing up, I needed that, in order to be able to have access
to what was being said on the screen. More instrumental is the gentleman
on the left-hand side of the screen. Geordi. This show was unique because
it had characters with disabilities, whether they had disabilities themselves
or they portrayed those characters. Geordi was my role model. He had a disability. He was deaf. Oh, I’m sorry, he was blind. And he had this thing
on his face, it was a visor, and it helped him to see
in a different way. You know maybe it wasn’t the same
as what we all envisioned, but it was his own accommodation tool. I also saw in Geordi that
he could have been successful no matter if he had his visor or not, but he was able to advocate for himself. The crew of the ship saw him as an equal. He was a high-ranking member
and he was able to travel around with this diverse group
of people across the universe, fulfilling their prime objective to seek out new life,
and new civilizations. Little did I know that years later, I would have my own
cool piece of technology that was very similar to Geordi’s. It was my cochlear implants. So as you can see, I have
these things on my head. It’s hard to see so I’ve got
a visual demonstration up there. It’s not a hearing aid,
it’s actually an implant. Not this part, of course; this is the external part
called the processor. If you look at the the white ring
or the circle thing up at the top, that’s a magnet and it connects
to the internal portion of my head and I can take it off. As soon as I take it off, I’m deaf. It’s kind of a cool party trick, actually. (Laughter) The internal portion of it is something
a little bit more complicated. I’m not going to get all science-y on you,
but this is just a brief demonstration. So you can see up there
on the left side is the processor. There’s a wire that goes around
to the middle part, and there’s this little spiral thing
that looks like a seashell. That’s your cochlea. Everybody in this room
has at least two of them, hopefully not more, hopefully no less. The cochlea basically looks
like a seashell and has a tunnel that goes all the way
to the very center, called the apex. Inside that tunnel are thousands
of little hairs called cilia. When sound travels past those,
it stimulates the hairs and basically completes the sound. With people like myself
and my kind of hearing loss, unfortunately those cilia are damaged
or missing or there’s any number of things that might have gone wrong. So what an implant does is,
there’s a wire that’s called an electrode and it sends electrical signals to the internal portion of my cochlea
and stimulates those hairs. So it’s not amplifying the sound,
it’s basically just completing the sound. A lot of people were asking me,
“What’s it like to have these implants?” And I think it’s pretty cool. And to demonstrate that, this is what I show everybody
when they ask me. That’s me after my surgery. (Laughter) It’s grainy because of my terrible
Photoshop skills. (Laughter) Anyway, first and foremost,
this is not me. Second of all, this is actually from
that show I was talking about before, it’s a group called The Borg. Now The Borg, they were kind of bad guys
so I try to distance myself from them. However, what I’m trying to illustrate
with this picture is the fact that they had this technology
and they were able to incorporate it with like the fleshiness of the human form
and find ways for technology. And back then when the show was on,
it was insightful because it was fantasy. And nowadays it’s become
a reality, and I’m proof of it. I’ve got these things on my head. It may not look as cool as that,
but it’s still pretty cool, right? The point is that it’s actually
a tool for communication for me, so it’s one of many
that I have in my arsenal. I like to be able to be flexible
with my communication. Another tool that I have is sign language. You see, we are all products
of our circumstances. We’re all here for a reason and we’re shaped by the things
that happen to us throughout our lives. I am who I am because of my deafness,
and I wouldn’t change it for the world. I could have gone in any number
of different directions, and oftentimes I did. I didn’t always embrace my failures. A little bit of backstory
about my upbringing: I was actually born hearing
and at the age of a year and a half or so, I had something called meningitis. Meningitis is a pretty serious sickness. I was brought to the emergency room,
and at the emergency room my parents were told by the doctors
to start preparing for the worst because there was a very good chance
I was not going to make it. And even if I did make it, they were expecting that I would have
permanent sustained brain damage for the rest of my life. By some miracle, I managed
to pull through and I survived, and I’m here today. Even more miraculously, I managed to come out of it without
any permanent brain damage. Although if you’d ask my wife about that,
she might have a different assessment. (Laughter) However, as a result, I became
profoundly deaf in my left ear, and I had a continuous fluctuating
hearing loss in my right ear. Some days it would be perfect,
some days I would really struggle. If you could summarize my entire existence
from the time I had my meningitis up until probably about
ten years ago, in one word, that one word would be “isolation.” I’m not saying I didn’t have
good experiences growing up because I did. There were things that were happy,
there were things that were sad, but I felt very isolated. I felt like people didn’t understand
what it was like to be me. My teachers, my administrators,
my parents, my family, my friends, the few friends that I did have,
they just didn’t get it. When I was in school
I oftentimes was overlooked. And whenever there was something
I needed in school like an accommodation, my parents would go rushing in there
and they would talk to my teachers and try to figure out a accommodation plan
and they would help me get through it. As I got out of school
and I went into the workforce, I started experiencing more barriers, and I couldn’t understand why
it was more than it was in school, and it was then I began to realize that my parents weren’t there to help me
get through those problems anymore, and I needed to become
my own self-advocate. In hindsight I wish I would have gone back
and I would’ve talked to my professors, my teachers, and everybody
that was involved in the school and been involved
in my own accommodation plans. I went through work with these barriers
and I coped in the best way I knew how. And oftentimes that was with anger and sometimes confrontational,
or confrontation. The worst thing happened
at about the age of 22. All of a sudden, with no warning, I lost the hearing
in my right ear as well. I became deaf. It just was like a ton of bricks
that were dropped on my chest. I didn’t know what to do, where to go. And I was lucky enough in the sense
that I had a job at that time and so I kept working and expecting
some magical potion was going to drop out of the sky, was going to help me figure out
my life, and it never came. And I felt I had this glass ceiling
like no matter how hard I worked, no matter what I did,
I couldn’t get past a certain point. And so I decided I needed to do something
in order to change my life, and make sure I was successful
for the future. So, I thought about it
and I made a huge decision in my life. I wanted to stop being a victim, so I decided I was going to quit my job,
and I went back to college. College was a game changer for me. It was one of the most amazing experiences
I could ever recommend for anybody. You see, when I first arrived at college,
I had a meeting with disability services. My disability services counselor
was, believe it or not, deaf herself. Her name was Cassie. And what she taught me
remains with me to this day. She understood what it was like to be me. For the first time in my life, we sat down
and she noticed my anger and frustration, and she said, “Jason, anger
is not going to help you. You need to think about the solutions
and find ways to accommodate them.” And so I did. And she and I sat together and we set-up
our own accommodation plan, and I was successful in college. At the same time, I blossomed. She encouraged me to get involved with
American Sign Language and I learned sign. I found out that there were many students
at the university that knew sign language, that so many people understood
what it was like to be me. And suddenly I blossomed,
I started coming out of my shell. I started meeting people
who understood me, I was able to make friends,
and for the first time in my life I felt like I could finally be successful,
and I could dream big. I felt like I was home. As I was going through my college career, I started getting involved
with these internships. I wanted to find out
what I wanted to do with my life. So I started working
for this nonprofit resource center for people with disabilities, and I took one internship
after another at this place, and I started to notice patterns. See, I was working with these people
who were deaf or hard of hearing myself. And they were consumers. And they were struggling
in the same fashion that I was. And I noticed that same anger
and sometimes, I’m sorry, frustration and sometimes anger
that they were projecting were the same things that I was feeling,
and the things that I overcame. And so I took my own advice
and I started sharing it with other people and saying, “Sometimes self-accommodation
is simply knowing what you need, and communicating it in a respectful way to those who are the key play-makers,
employers, that kind of thing.” At the same time I noticed
three clear patterns emerging. The first pattern that I emerged,
or I noticed, was that people, it doesn’t matter if you’re disabled
or from any other background, they want to dream big. But sometimes they feel limited
by their disability like I did. The second thing that I observed is that, especially in the deaf
and hard of hearing community, was that on one side
over here is the ASL camp, on this side is the assistive
technology camp, and both of them feel that their way
is the way to salvation. I loved both of them
and agree with both of them, but I felt frustrated that sometimes
you didn’t see that middle ground, that intermingling. And the third thing that I noticed was that both sides were not getting
what they wanted at all times. And so internally I was pulled
in both these different directions. What’s the right way?
What’s the wrong way? And I thought to myself:
Why can’t it be both? Why can’t we have both? Why is there a right way or a wrong way? So after I graduated college, I was getting ready to go to start working
and I started thinking about these things. I started thinking how cool it was
that I was able to come up with my accommodation plan
while I was in college, but would I do when I entered
into the workforce? I didn’t want to regress and go back
to that point where I felt like I wasn’t getting what I was needing
and that I was working extra hard. I wanted to make sure
it was a seamless transition. And so I thought critically: What can I do without sign language
interpreters or captionists available? I could use dictation software
or that kind of thing. At the same time, I wanted
to reconnect with my hearing side; my wife, and my wife’s family, my family,
who didn’t know sign language. And I started considering
the prospect of cochlear implants. At the same time I wanted
to be respectful to the people who taught me so much about what it was, what would it have meant
to be a deaf person, my deaf and hard of hearing
friends and colleagues. And so I talked to my friends and I said, “Is this okay for me to do?
Would you have any problems?” Believe it or not,
they were open-minded to it, and not a single person opposed
because they knew my story. And so I got my implants. Now again, the implant
is not a fix for my deafness. There are still points where I struggle. Like talking on a phone
or when I get to a background, but the key important thing is that when
you become proficient at something, say for example, me being able
to listen with my implants, I want to have a fallback
for communication so that I can also communicate
in different situations. So if it gets too noisy or something,
I can start signing instead. And I believe that everybody
should have options and backup options, and if possible options for those,
or other backup options as well. I decided I wanted to share
what I’d learned with the world and the people
that I was interacting with, so I setup my own nonprofit organization
with the help of several friends. I also got my job at the university. And I’m here to tell you
that success is entirely possible. And here’s what I learned and I continue to share
with everybody that I meet: First and foremost, doesn’t matter
if you have a disability or not, dream big! Think about things like if you want to be a nurse, or a doctor,
or a sociologist, or a counselor, you can do any of those things. You’re not limited by your disability. Look at those things
called the “essential functions.” Things like speaking, understanding, talking, making phone calls,
moving things, lifting; don’t let those things stop you,
they’re not barriers for you, they are ways of jumping out at you
and saying: Think about things critically, and how can I solve those,
with or without an accommodation? It’s also easy to get upset
at various times during this process, but it’s not going to help you. Solutions and respectfulness will. Accommodations. There’s no right
or wrong way to do things. There’s only answers. Only options. It doesn’t matter if you know
sign language and use that to communicate, or you have cochlear implants, hearing aids, or assistive technology. The important thing
is communication access. That’s it. There’s also two halves
to every accommodation. Me, as a person with a disability, I feel like I shouldn’t have to be limited to unemployment
or narrow career prospects. I want everybody
that I share with to dream big! But at the same time, the second half
of that accommodation plan lies with everybody else,
those who don’t have disabilities. Say, for example, you have a kid
or somebody who’s younger and they’ve experienced a disability. Don’t wait to get them
involved in the process; teach them how to accommodate themselves
and allow them to make their own mistakes. Or if you have a parent or a family member
that’s come across deafness, do the same thing. You see I believe everybody
should have opportunities to be successful, no matter what. You just need a plan. I had a plan and I was able to attain it. I’m deaf. I’m proud and I’m proud
of where I’ve gone in my life, and I feel like I’m just like you. We are all a community together, we live on the same planet,
we interact with each other, and we share our existence. Let’s start that conversation
together as well. I bet it’s going to be a great one. Thank you. (Applause)