Make (a) Way: Transcript

Maiken Scott
This is The Pulse — stories about the people and places at the heart of health and science.  I’m Maiken Scott.

Feranmi Okanlami
Yes, so, on July 4, 2013, I was at a pool in New Haven, Connecticut. And I jumped into a pool, and hit either the bottom or the side or something, can’t be exactly sure, and I was immediately unable to feel anything really from my neck down at that point.  

Maiken Scott
Feranmi Okanlami was entering his third year of medical residency when the diving accident happened. Luckily, his friends were there, noticed right away, and got him out of the pool.  

Feranmi Okanlami
I immediately knew that I’d probably suffered a cervical spine injury. I was an orthopedic surgery resident and so I took care of spine injuries myself. And it was very interesting. I immediately just sort of kicked into my own medical gear. And I actually was the one directing my friends. I was like, “Pull me out! Stabilize my spine, roll me on my back, call 911!”

Maiken Scott
Feranmi became partially paralyzed. He went to rehab. But then he faced a big question: How would this impact his ability to be a doctor?

Feranmi Okanlami
My disability is something that is visible. People can see me in a wheelchair and they can make a determination about what I can and can’t do, and they think they know what my abilities or inabilities are.

Maiken Scott
It’s at this point that Feranmi’s career could have taken vastly different turns.

Feranmi Okanlami
So, yeah, there were things that were difficult. it was difficult to get in and out of rooms, because our health system is not accessible to patients or for providers.

Maiken Scott
He knew a doctor who was told, “Don’t come back” when she had to start using a wheelchair. But that didn’t happen with him. He found lots of support.

Feranmi Okanlami
Rather than thinking that there were things I wouldn’t be able to do, they just assumed that I’d be able to, and they allowed me to show them how, and we worked together to figure out how things would be possible. [pause] Disability does not mean inability.

Maiken Scott
So what does disability even mean?

Voice 1
I’m completely blind, like 100 percent. I don’t see shapes or colors, or anything like that.

Voice 2
I’m missing my right leg.

Voice 3
I have epilepsy.

Voice 4
I have a history of bipolar disorder.

Voice 5
Many of my joints do not bend, so my hands are kind of more like paws in some ways than hands.

Voice 6
Being disabled, it means being different.

Voice 7
What did you say? What do you like?

Voice 8
What.

Voice 9
What.

Voice 8
Do.

Voice 9
Do.

Voice 8
You.

Voice 9
You.

Voice 8
Like.

Voice 10
Inclusion is important. I really dislike being excluded from things.

Voice 11
Is disability necessarily something that is bad, or good?

Maiken Scott
On today’s episode, we meet people with disabilities who are challenging how others view them. They are changing their schools, workplaces, their communities. They’ll tell us about their lives: feeling accepted or feeling excluded, frustrations and wins.

Let’s start with the field of medicine. If you have a disability, a doctor will diagnose you and treat you. You’ll have lots and lots of interactions with medical professionals over the course of your life.

But have you ever met a doctor who has a disability? I haven’t — or at least not that I know of. Doctors are expected to be perfect, right? Super humans, of sorts. Really smart, physically fit, ready to work around the clock and perform miracles every day. But more and more current and aspiring doctors say this narrative is a disservice — to providers and to patients.

Can they change the culture? Elana Gordon reports.

Elana Gordon
When Stacy Jones got to med school she was prepared to struggle. She’d always been aware, in the back of her mind, that certain aspects of academics were tough for her. She figured she’d just have to work even harder. She had made it all the way to Harvard medical school. But that “work even harder” strategy didn’t work out so well.  

Stacy Jones
I basically almost failed a lot of my classes, and, um … I just during that time felt very ashamed and I felt very lonely.

Elana Gordon
She’d avoid professors, terrified that they were thinking she was lazy.  The summer after her first year, in 2015, Stacy went to get evaluated. She realized she had a learning disability and ADHD.

Stacy Jones
It was very validating when my neuropsychologist actually sat down with me and said, “Stacy, you’re smart. Stacy, look at all of these things that your brain does well. It must be so frustrating that you know when you read or listen to lectures your brain’s not processing language in the same way.”

Elana Gordon
It was a relief to hear that. But it also wasn’t a relief.

Stacy Jones
‘Cause I think there is this perception in medical education and in the culture in general of not really admitting vulnerabilities and not admitting, like, disability isn’t a word that I often heard spoken.

Elana Gordon
That’s because disability hasn’t been something that’s talked about a lot. When it comes to medicine, doctors often like to think of themselves as the fixers. Not the ones who are ever in need of care.

Lisa Iezonni
This profession historically has viewed themselves as able-bodied in the extreme.

Elana Gordon
Lisa Iezonni is very familiar with this culture.

Lisa Iezonni
I am a professor of medicine at Harvard Medical School and the director of the Mongan Institute Health Policy Center at the Massachusetts General Hospital.

Elana Gordon.
She uses an electric wheelchair or scooter to get around. And you have to really sprint to keep up with her.

Elana Gordon [to Lisa]
Oh my God, you really are going fast!

Elana Gordon
She likes to move at rabbit speed.  

Lisa Iezonni
There’s the rabbit right there, and there’s the turtle.

Elana Gordon [to Lisa]
There’s a literal rabbit and a turtle on your scooter.

Lisa Iezonni
Yes, there are little tiny images of a rabbit and a turtle, and the rabbit is fast.

Elana Gordon
In the early ‘80s, when Lisa was in medical school at Harvard herself, she was diagnosed with multiple sclerosis. She wasn’t in a wheelchair then, but she had been experiencing a lot of shadowy symptoms — like a sudden loss of sensation in a limb — so she had to be mindful of flair-ups.

Her advisers knew this. They treated her differently for it — as did just about everyone else.

Lisa Iezonni
When I scrubbed in on a surgery one time, the surgeon at a kind of slack time during the operation turned to me and said, “Do you want my opinion about whether you should become a doctor?”

And what am I going to say? I’m a third-year medical student. I said, “Certainly Dr. so and so, I’d be happy to hear your opinion.”

And he then opined that I had no right to go into medicine because I lacked the most important quality in medicine, and that was 24/7 availability. And so during the rest of the clerkship, the residents almost didn’t talk to me. I was beneath their notice because their attending told them I had no right to be in medicine.

Elana Gordon
That wasn’t the end of it. Lisa remembers then meeting a prominent doctor from an affiliated hospital and asking about her future options.

Lisa Iezonni
And he paused for a second, steepled his fingers. And then he looked back at me and he said, “There are too many doctors in the country right now for us to worry about training a handicapped physician. If that means some people get left by the wayside, so be it.” That was pretty stunning.

Elana Gordon
Lisa didn’t become a doctor. She just didn’t have the support. But she also didn’t leave medicine.

Lisa Iezonni
The work that I do is on disparities in health care for people with disabilities, and I think that part of the origins of disparities are stigmatizing attitudes.

Elana Gordon
Lisa is keen on pointing out that her experience in medical school happened six years before the Americans with Disabilities Act, or the ADA, passed.

[Clapping. Patriotic music.]

Elana Gordon
The landmark legislation created federal protections for people with disabilities.

President George H.W. Bush
Every man, woman, and child with a disability can now pass through once-closed doors into a bright new era of equality, independence and freedom.

[applause]

Elana Gordon
In the decades since, amendments and court rulings have clarified those rights to services and supports. But Lisa and others say those changes have been slow to take hold in medicine.

Another Lisa — Lisa Meeks — is on a mission to change that.

Lisa Meeks
What we view as absolute is very different now than what it was 10 years ago, and we owe a lot of that to assistive and adaptive technologies. But also, you know, medicine is an ever-evolving creature.

Elana Gordon
Lisa Meeks is a psychologist at Michigan Medicine specializing in disabilities in medical education and the profession at large. Lisa says getting support is not about getting an easy pass to become a doctor. It’s the ramp, so to speak, that allows a person to enter the room.

Lisa Meeks
There is no waiver of any sort of skill or competency. The physician has to know what they’re doing and has to understand the clinical knowledge, the same clinical skills as their peers.

Elana Gordon
But places may just not know how to align what’s required to become a doctor with what’s reasonable support for aspiring doctors with disabilities, especially in the clinic.

Lisa Meeks
And so I think the saddest thing for me is when people don’t know what to do. They don’t know don’t know and they don’t know about the resources that are available.

Elana Gordon
Lisa recently co-authored a major disabilities in medicine report — think of it is a blueprint for best practices — with the American Association of Medical Colleges.

Geoffrey Young is a director there. Medicine, he says, is having a moment.

Geoffrey Young
We have to do a better job of educating those in the field about, you know, what the potential is for those with disabilities, versus what is consumed or assumed to be an automatic inability.

Elana Gordon
The report featured first hand interviews, and found that many aspiring doctors actually hide their disability out of a real “fear of judgment, bias and skewed perception of ability.”

Just under 3 percent of students in medical school have disclosed a disability. That’s far fewer than the proportion of people with disabilities in the U.S. — or in other graduate programs. But, the thing is, doctors with disabilities are out there.

Earlier this year, Lisa Meeks had an idea. If doctors with disabilities saw more people like themselves, would they come out of hiding, talking more openly about their challenges and misperceptions? She started a hashtag: docswithdisabilities. Her goal was to find 20 doctors willing to share their stories. And…

Lisa Meeks
There’s no end in sight.

Elana Gordon.
She has been flooded with interest from around the country.

Nicole Taylor
I’m an anesthesiologist. and I was diagnosed with multiple sclerosis in July of 2010.

Elana Gordon
Nicole Taylor is at Wake Forest Medical School in North Carolina.

Kurt Herzer
What I would do in the hospital setting is I had different kinds of glasses.

Elana Gordon
Kurt Herzer has a genetic retinal disease and is a physician scientist at Oscar Health in New York City

Kurt Herzer
Some that were essentially like small little telescopes mounted on a pair of glasses.

Erica Dwyer
So I was actually born deaf in one ear.

Elana Gordon
Erica Dwyer is an internal medicine resident at Cambridge Health in Boston.

Erica Dwyer
I was almost done with medical school and then realized that I was also losing my hearing on the other side and I started needing technology to sort of help amplify my hearing and to help manage in clinical settings and the like.

Jason Brookman
I have attention deficit disorder.

Elana Gordon
Jason Brookman is in Baltimore. He actually published a case study about himself,
and how he’s learned to managed his disability as an anesthesiologist. It hasn’t always been easy.

Feranmi Okanlami had a spinal cord injury and is partially paralyzed.

Faranmi Okanlami
People treat me as if I’m an anomaly because I’ve been able to “achieve despite my disability,” and I think that once people see how many people are already out there practicing with disabilities, that will normalize this more.

Elana Gordon
He’s at Michigan Medicine now and says sure, he might not be the guy on the ground doing the chest compressions during a code when someone has stopped breathing, but a doctor’s more than that.

Faranmi Okanlami  
Very often that is not the role you run. You have to be the person deciding what medication to give. You have to make sure that the people doing chest compressions are doing them adequately. You have to think about what could be the reason the person stopped breathing, or their heart stopped. The tasks required to run a code aren’t just physical tasks.

Elana Gordon
But these conversations and shifts in medicine are also being driven from a future generation of doctors.

Computer text voice
The water for med education is turbulent and difficult…[fade]

Stacy Jones
So you can change how fast it goes, the voice and even the language. With text-to-speech, my reading speed increases three to four times. It’s amazing.

Elana Gordon
Stacy Jones, a medical student, says getting diagnosed with a learning disability after her first year at Harvard medical school, and then later figuring out what she needed, has made all the difference.

Stacey Jones
It’s not just you know, OK, I can read faster now. It’s allowing me to take that burden off to actually learn.

Elana Gordon
Stacy says she struggled sorting all this out after she was first diagnosed, and figuring out where to get support. A turning point, though, was when she realized she wasn’t alone, that doctors with disabilities are out there, and so are future ones.

Last year, she started connecting with other medical students with disabilities from around the country.

Stacy Jones
We formed this national group out of this idea of destigmatizing disability in medicine, and bringing peers from across the country and Canada.

Elana Gordon
She and her group say these efforts are not just important for them, but for patients, too. As it stands, research has found that people with disabilities are less likely to get recommended treatments and screenings, like pap tests. One reason for that may be that doctors carry biases, and don’t always understand the nuances of these experiences.

And so for students like Stacy, the most  “able” physician of the twenty-first century is one who has the skills to connect with patients and what they’re facing, who can think creatively about how to come up with the best care. Looking ahead, as Stacy completes her own medical training, she’s leaning toward working in pediatrics.

Stacy Jones
I think that when I see patients and families of kids who just received this diagnosis, and they’re sort of receiving this narrative of your kid needs help, your kid needs special education, you know your kid isn’t perfect, I think I have the viewpoint where I could say no your child is perfect. Your kid is smart. Your kid is capable. This is not a tragedy. Disability is not a tragedy. I think that’s something that is a huge strength that physicians can bring to medicine and to patient care.

Maiken Scott
Elana Gordon reported this story.

Today’s episode is about disability. We’re meeting people who are challenging perceptions and expectations. They are changing their schools and workplaces.

Teresa Blankmeyer Burke
Hi, I’m Teresa Blankmeyer Burke, associate professor of philosophy at Gallaudet University.

Maiken Scott
Gallaudet is a school for deaf or hard-of-hearing students. Teresa studies ethical issues around disability. She is deaf. One of the questions she thinks about is this:

Teresa Blankmeyer Burke
Where do we put the locus of disability. Does it reside within the person? Or does it reside within the environment?

Maiken Scott
Take for example the Gallaudet campus

Teresa Blankmeyer Burke
Just about everyone there uses a sign language, whether you are hearing or deaf. And, in that context, if a person who doesn’t sign walks onto our campus and asks for directions, it becomes a little bit of a challenging conversation. And you can point, you can write things down, but that person who is a member of the hearing mainstream has this aha moment of, “Oh, I need to modify my behavior because what I can do outside the gates doesn’t work for me once I walk on this campus.”

Maiken Scott
Teresa also questions our definitions of disability. Is it a condition? Or merely difference?

Teresa Blankmeyer Burke
The medical model of disability is when the focus is on the individual. So disability is seen as the individual’s, I don’t know, “problem,” if you will — I’m not crazy about that language. And to look at the individual and to see what tools or technologies can we give this individual so that this individual can better fit into this society that we’ve constructed. And I think that is not sufficient. I think we need to look at society. We need to look at the features of society and to ask well, what can we do about this society as it is constructed. I mean, imagine, if when we first put together televisions, they all had captioning from the start. That’s a little bit different than having to add the captions later.

Maiken Scott
That’s Teresa Blankmeyer Burke from Gallaudet University.

This is The Pulse — stories about the people and places at the heart of health and science. I’m Maiken Scott.  We’re talking about disability today: what it means, and how our understanding of it is changing.

I have a good friend who uses a wheelchair. And every once in a while he says, “Have I ever told you that being disabled is a pain in the neck?” But the only times he ever says that is when a place is not accessible. There’s no curb cut. A sudden step. A door he can’t open.

“Accessibility” has legal definitions, of course, like a hotel has to have rooms that work for people in wheelchairs, or braille signs. But for people living with disabilities, accessibility means a lot more. When I met up with Teresa Blankmeyer Burke, who studies ethical issues around disability, she gave me a great example of this. Teresa is deaf.

Teresa Blankmeyer Burke
Something that I like to think about is how humor works. So often, when people tell jokes, what will happen is, you have the lead-up, the buildup to the punchline, and then the punchline gets delivered, and it’s typically done with a different affect. Maybe the pitch of the voice drops a little bit. And you miss the punchline. And everyone is laughing. And again, it’s a simple example. But it’s the sense of, “Oh I’m a little bit on the outside. I didn’t get it. I wasn’t part of that communication interaction.” If a punchline is all-accessible it gives you a way of being in the world that I think is important to being human.

Maiken Scott
Teresa says total inclusion isn’t always possible, but we can do way better to help everybody participate.

Sometimes, it’s about information, and setting expectations. Last year, Elizabeth Clay and her husband traveled to the Catskills in New York to go hiking and explore the popular swimming holes in the area.

Elizabeth was born with one leg and uses crutches to get around. While planning the trip, she checked online to make sure the trails were accessible. They started down the path. It was smooth and wide.

Elizabeth Clay
We got all the way up there where the swimming hole was. There were just rocks everywhere. And it wasn’t big flat rocks that you can kind of, you know, figure out a way to get over. We just couldn’t think of a safe way for me to get over them and into the water. And you know, we were laughing, like all right, we’re in this beautiful area, so maybe we’ll stay for a few minutes and eat our lunch and see what happens.

But it just was a shame because I’m a big swimmer. It’s what I do for exercise, and I love being in nature, and it was a beautiful area. And we didn’t really get to enjoy it. And I went back to the website once we got back to where we were staying, and I just kept thinking if they had just included one or two more sentences that describe the terrain once you get to the swimming hole, what that’s doing is giving people enough information to make the decisions for themselves, if they can go.

Maiken Scott
Elizabeth Clay says this kind of thing happens a lot. A place might meet the legal guidelines in terms of being accessible — but then, from her personal perspective, it’s not.

People with disabilities live, work and play in environments that are not designed for them. They learn how to get around despite those things, and that happens in every aspect of their lives.

Think about video games. They are super visual — and made for people who can see. But that is changing.

Alan Yu reports.

Alan Yu
Think about what it’s like to play a racing game, like Need for Speed. You hurtle through busy streets sometimes at 100 miles per hour. You see a shortcut through a fence so you drive right through it. You dodge police cars trying to cut you off. You need to react to what’s on the screen very quickly, without slamming into walls.

Now imagine doing all that without seeing the screen. Blind gamers do it a little differently

Karen Stevens
Different pavements have different types of vibrations so you can tell what kind of ground you’re on. There’s feedback for when you hit other cars or cars hit you, so you feel the controller vibrate. They also have whooshing sounds when you go past obstacles, so they knew whether or not they can keep track of where they are based on that, and you can also can hear the other cars. You could hear the other cars turning so they knew they had to turn, too. Between all that, they kind of memorized the tracks

Alan Yu
That’s Karen Stevens, a software engineer at EA Sports, which makes games like Madden NFL, the NBA game, and the soccer game FIFA.  Blind gamers tell her they move through the courses in Need for Speed relying entirely on sound.

Karen Stevens
Also they have the different speeds of cars represented by different engine sounds, so they can use that to figure out where they are too. But It’s totally accidental. We did not plan it that way, but it does work for them.

Alan Yu
At EA Sports, Karen’s job is to push game developers to make their games accessible.

Karen Stevens
Inclusion is important for everyone. So I mean I’m disabled myself and I really dislike being excluded from things.

Alan Yu
Karen is nearly deaf. She wanted to show her colleagues that blind gamers play mainstream games like the ones her company makes. So she invited a blind player to come to the office with her. He challenged her co-workers to the fighting game Mortal Kombat.

Karen Steves
It’s really hard to say a blind gamer doesn’t exist when he beats you at a game

Alan Yu
She wants to make sure there are features for blind players by design, not just by accident. She made vibration cues for the visual prompts in the game Madden NFL, so you don’t have to see the screen to play.

Karen works in the huge, commercial game world, but there is also a smaller market of accessible games — like those developed specifically for blind people. Software engineer Austin Seraphin tried them when he was younger. He has been blind since birth. Austin says instead of a video game, a racing game designed for the blind is basically an audio game. A voice tells you to steer left and right.

Video game trailer
Right. [Car horn. Engine.] Easy left. [Engine.] Left. [Car horn.]

Alan Yu [to Austin]
So it is like … a constant backseat driver?

Austin Seraphin
Yes, it is like a backseat driver. That’s great! Which is super annoying, right? is that your implication with that, like having a backseat driver is super annoying?

Alan Yu
But in this case, the backseat driver is the one helping you navigate

Austin Seraphin
Remember, too, that most people go blind later in life. I’m like a minority within a minority. I’ve been blind since birth. Most people go blind later in life, and a lot of them have memories of driving and exploring and that freedom, and that’s what they want to recapture

Alan Yu
That sense of freedom you can get in a video game matters to Brian Smith. He’s from New Mexico.

Brian Smith
Games have meant a lot to me growing up in middle of the desert. I really like the way that video games could take me to places that I just couldn’t go before growing up and give me experiences that I couldn’t otherwise have

Alan Yu
As a kid, one of Brian Smith’s favorite games was Super Mario Brothers.

[Mario theme song plays.]

Alan Yu
He really liked finding secrets and shortcuts in that game

Brian Smith  
And then, every day at school, you’d go and tell your friends, “I would do this; hey, did you realize there was a coin block or a vine here,” and word of mouth would spread

Alan Yu
He is now a computer scientist doing his PhD at Columbia University.  He decided to make a user interface so that blind gamers can have more freedom to explore worlds and drive cars. He wanted the world of accessible games to be better — more fun.

Brian is sighted, so he talked to people who are blind to understand their experience. In a racing game, you have to know where your car is, and you have to know when and how to turn. So Brian made an interface where the engine sound is a proxy to help blind gamers place their car in space

Brian Smith
Imagine that you are sitting directly behind the car that you’re controlling, so that you hear the sound of the car’s engine right in front of your face, [engine sound] so it’s right there in front of your face. And then as you steer the car left and right, and this is with a standard video game controller, you’re actually controlling that engine sound directly

Alan Yu
You don’t need fancy headphones for this. Your headphones are stereo. As your car turns left, the engine sound in your left ear gets louder. The sound slides to where your car is.

[Engine sound slides left.]

Alan Yu
Brian asked blind volunteers to test the game.

Brian Smith
It was a really cool thing the first time we saw one of our participants who are blind get a lap time that was better than one of our sighted participants.

Alan Yu
Brian himself was beaten by Edis Adilovic, a visiting graduate student. Edis lost his sight completely when he was 2.

He’s from Denmark, so we spoke to him online. These days, he mostly sticks to audio games made for the blind.

Edis Adilovic

So none of the mainstream games are 100 percent accessible.

Alan Yu
For example, Grand Theft Auto 2. Gamers call it GTA. In the game, you can assassinate gangsters, find hidden packages and, yes, steal and drive cars — but it’s not accessible.

Edis Adilovic
I didn’t know basically what I was doing. I usually had to have some sighted assistance. One of the difficulties, challenges in GTA for instance was actually to drive the cars, so I see a big potential in implementing this system that Brian developed.

Maiken Scott
That story was reported by Alan Yu.

We’re talking about how people with disabilities are changing the culture, expectations, the narrative. Along with that, the language we use to describe disabilities is also changing. I talked about language with Mariette Bates. She teaches disability studies at CUNY, the City University of New York. She has what’s often called a hidden disability: epilepsy.

Mariette says there’s a divide about terminology. For example, in the intellectual disability community, there’s a preference for “people-first language.”

Mariette Bates
So they like to be called a person with an intellectual disability, but a lot of disabled people are not happy about that. And they really are embracing their identity as a disabled person, and they want to be called disabled, you know, first rather than, they don’t like the people-first language. And there’s a new generation of people on the autism spectrum that are very interested in being called autistics. They don’t want to be called a person on the autism spectrum. They want to be referred to as on an autistic woman.

Maiken Scott
Give me an example of why language is so important, because that’s a big topic. It changes all the time. If you look at the word disabled on its face, it’s a terrible word. I mean, it means not functioning basically. Right? So, so give me perhaps an example that brings to light why these discussions are so important.

Mariette Bates
Well, you know, coming from the intellectual disability community, when I first started in this field, the language and the terminology people used was this term mental retardation, but people who were labeled that way really didn’t like it. They thought that it had a connotation of stigma, of incompetence. So they really took control of the language and they were very interested in having the agencies that served them, change the names. If they had that “r word” in the name, they really wanted it off the building and off the letterhead. So we try to be respectful and understand which people would like to be referred to by which language and what, what verbiage.

Maiken Scott
Is it best to just ask?

Mariette Bates
Yes. I think it is. You can pick up sometimes subtle cues, but I think it’s very helpful to ask because they think that people want to discuss this. And they want to let you know why it is that they’ve chosen the way that they would like you to refer to them.

Maiken Scott
That’s Mariette Bates. She teaches disability studies at CUNY.

Whatever language we choose, chances are, it’s inadequate to fully describe people’s experiences, their lives. How Andrea Avery describes herself probably depends on the day — and how she is feeling. She was diagnosed with rheumatoid arthritis as a child. There are times when she’s unable to move. Other times, she’s fine. And this debilitating illness has had a big impact on her ability to do one of the things she loves.

Andrea Avery
It was when I was 7 that I was finally allowed to take piano lessons. And it was just … there was no looking back after that. It was just … I would daydream about it in school. The way other kids might tiptoe down to sneak out of the house or meet boys or do drugs or something, I just wanted to go down to the piano and play some greatest hits of the ‘70s! It was like love. It wasn’t like love, it was love.

[soft piano music]

It was just this incredibly tempting and totally available intellectual puzzle, a means of self-expression, and then as I grew older and got better at it, means of claiming an identity:

“Oh, you’re that piano girl.”

I first learned that I had rheumatoid arthritis when, in my 6th-grade year, I started to have these kind of weird symptoms. I remember being in French class in middle school and looking at my thumb and thinking, “My thumb looks funny.”

And you know, it abated. And a few weeks later, I was playing on a basketball team — quite badly at the time — and my shoulder really, really hurt. And it just … and, I raised it up and I couldn’t put it down.

[soft piano music]

The day that things changed for good was when I literally leapt out of bed and my feet and legs crumbled beneath me and everything hurt. And I could not put weight on my lower extremities. And that, I think, is when both my mom and I had a sort of wake-up call.

My hands are really interesting hands. And are, first of all, not symmetrical. My two hands don’t look like each other. My fingers are … many of them sort of fused solid. So many of my joints do not bend. So my hands are kind of more monolithic. They’re more like paws, in some ways, than hands. I also have on several of my fingers, several of my fingers, rheumatoid nodules, which are small round bumps that crop up.

[soft piano music]

It was probably while I was in college. I was studying music. I knew then that playing piano was going to be not a career for me. The bargain I made is, okay, if I can’t play piano at all, I’m going to write about music and I’m going to sort of honor its presence in my life and also its loss in my life — by composing something beautiful.

When I’m well, I’m well, and it’s the farthest thing from my mind. And when I’m not, it’s a crisis and it’s the first thing I need to attend to so that I can get back to my life without it. I identified that early on, that I had to sort of put arthritis first so that it could be last.

When I find myself in either a community of all able-bodied people or all disabled people, I don’t quite feel like I fit in either community squarely. I served on a panel once about disability for a women’s studies class. And the other panelist, this woman was a wheelchair user and she said that I was “passing.”

And I, thought, because my level of disability is not like your level of disability? Because we’re not contending with the same things? Because I don’t use the same adaptive technologies you use, or any at all? Now I don’t fit here, either? I can’t … I’m not in your club, either? But I don’t fit squarely into either category.

But the truth is, most of us don’t. And at least over the course of a lifetime, most of us are going to visit the disabled side.

Maiken Scott
Andrea Avery wrote a book about her experience: “Sonata: A Memoir of Pain and the Piano.” Neda Frayha produced this story.

This is The Pulse — stories about the people and places at the heart of health and science. I’m Maiken Scott. We’re talking about disability: what it means, and how our understanding of it is changing.

There’s a huge and daunting question for people with intellectual disabilities when they leave high school. They exit a system that’s supported them for years and have to figure out what’s next. Karen Shakerdge followed one young man in Rochester, New York, as he made that transition.

Joanne Bringley
Do you know what this says?

What …

Akin Johnson
What  …

Joanne Bringley
do …

Akin Johnson
do …

Joanne Bringley
you …

Akin Johnson
you …

Joanne Bringley
Like?

Karen Shakerdge
Here at East High School, Joanne Bringley and her student Akin Johnson start the day by going over the weather, gluing some cutouts into a little book. This is journal time.

Joanne Bringley
Okay, which one do you want to pick? Which season do you like best?

Akin Johnson
Winter.

Joanne Bringley
You do? Really, better than spring?

Akin Johnson
Yes.

Joanne Bringley
All righty. Well, let’s put some glue on the back of here.

Karen Shakerdge
Akin is 21 years old. As a special education student, he’s in his last year of being able to go to school. In a few months, he’s going to leave East.

Akin Johnson
Well, I know that, I know that once, once I leave I’m gonna have a better life … once I leave.

Karen Shakerdge
I’ve spent a year following Akin as he transitions into the adult world. And from the beginning, he told me he wanted to work.

Akin Johnson
I’d rather go to work, like, help out with people in wheelchairs. They … I could help out with them.

Karen Shakerdge on tape
You want to help out people who are also in wheelchairs? Like in what way?

Akin Johnson
I have no idea. I just want to help out with people in wheelchairs. That’s my next step when I leave from East.

[contemplative  music]

Karen Shakerdge
For some people with disabilities, the question isn’t just: Can they be what they want to be? It’s can they find a place in the workforce at all? On paper there are services available for people who want to work. But students like Akin need other people to connect him to those services. Akin has cerebral palsy. He gets around in a wheelchair and can only really use his left hand. He’s also legally blind. And most of the people involved in making a plan for him say he needs too much help, that he’s not independent enough to cut it in a work environment.

Joanie Warren
He definitely wants to work. That’s all he talks about.

“Ma, I’m a work and get you a car.”

I said, “All right, Kimmy.”

I said, “What kind of car?”

“BMW”

He know the names too. I said, “Okay.”

[laughing]

Karen Shakerdge
This is Joanie Warren, Akin’s mother.

Joanie Warren
I love my son. I’m proud of his accomplishments. He came a long way. I’m proud of him.

Karen Shakerdge
I told Joanie what Akin had said about wanting to work with people in wheelchairs.

Joanie Warren
Oh, okay. He never told us that. [laughing]

Karen Shakerdge on tape
No?

Joanie Warren
He only talks about is them horses and getting a job. All day: “I wanna get a job. I wanna get a job.”

Karen Shakerdge on tape
‘Cause, one of the people, I know there are a couple people who work in his classroom — I said: “Could he do this? Could he go get a job?” And they said: “Well, you know, it’s complicated,’ because of .. um … you know, because him maybe being independent enough. I don’t know.

Joanie Warren
Yeah, they say he’s not ready for that yet. But you know, down the road he’ll get to that point, when he’ll be ready, but — not right now.

Akin Johnson
They have not told me what’s going to happen with me. They have not even told me what’s going to happen … like …  usually they’re supposed to tell me what’s going to happen with me once I leave from East.

Karen Shakerdge
Back at East High School Akin’s hanging out with one of his classmates, Lewis Ingram.

Akin Johnson
Lewis be sneaking up right behind me. You?

I … you wait, you wait. Me and you gonna have it out. Me and you gonna have it out when it’s time for us to go home — me and you gonna have it out, buddy.

Karen Shakerdge
Lewis uses a device that speaks for him.

Woman in background scene
Lewis likes to bug Akin.

Akin Johnson
He loves to bug me.

Lewis Ingram via machine
What did you say?

What did you say?

Akin Johnson
I said, “Me and you gonna …

I said: “Me and you gonna have it out.”

Karen Shakerdge
I asked Akin if he was nervous about leaving school.

Akin Johnson
I am not nervous and I will miss this clown, over here … I’m gonna miss … Yeah, I’m gonna finish school.

Lewis Ingram via machine
Why?

Akin Johnson
Why I’m going to a program?

[nonverbal response from Lewis]

Akin Johnson
Can you tell him why?

Joanne Bringley
Well, because how old are you?

Akin Johnson
21

Joanne Bringley
And what happens when you’re 21?

Akin Johnson
I’m gonna graduate and get me a job.

Joanne Bringley
You are going to be working.

Akin Johnson
Working, working, working!

Joanne Bringley
What would you like to do? If you could do any job in the whole wide world, Akin, what would you want to do?

Akin Johnson
Be a nurse.

Keith Scherberger
He’s a happy guy, he’s very social. He loves people. He likes to be busy.

Karen Shakerdge
This is Keith Scherberger, Akin’s Medicaid service coordinator. He’s the person who connects Akin to services that the government provides.

Keith Scherberger
We knew from his history at East that he was not going to be able to go into the workforce. So their recommendation was that he go to a day program.

Karen Shakerdge
And the recommendation that you just referenced is coming from who exactly?

Keith Scherberger
The special education teachers at at the high school.

Karen Shakerdge
Only 16 percent of people with intellectual or developmental disabilities nationwide who rely on support from an agency have paid jobs in the general workforce.

Keith Scherberger
And in talking to Akin, I don’t even think Akin sees himself as disabled. Because he’s able to do so much and communicate and be around people.

Karen Shakerdge on tape
OK, so I’m hearing … you’re saying he’s got a great deal of independence and yet not quite independent enough to potentially be in employment currently.

Keith Scherberger
I think that, um, his wheelchair and being that he has the use of only one hand is a barrier to employment. And when the day comes that he’s ready to go to work, we all need to work together as a team to make sure that wherever he goes to work, working with what he has  — he’s going to be successful at it.

Karen Shakerdge on tape
What do you think that might look like for him?

Keith Scherberger
I don’t know, I mean I could just see him as a greeter at Walmart — because of his personality: “Hi, how are you today?” You know, something where he’s almost like the spokesperson or the master of ceremonies, I guess — the greeter, you know, so that he’s got — he’s always got that interaction with other people going on. Because that is one of his selling points.

Joanne Bringley on phone
He will never be in competitive employment, no.

Karen Shakerdge
That’s Joanie Bringley again, Akin’s teacher at East High School. Her forecast for Akin is a little different.

Joanne Bringley on phone
There’s not a place for him. I wish there was, but there really isn’t. He can’t be independent enough in a work-based setting. And kids who can’t be independent enough in a work-based setting go to a day hab program, pretty much.

Karen Shakerdge
I spent a long time trying to figure out whether something could’ve been done differently to get Akin a job, or if what his teacher Joanie said is true — that there’s no place for him in the workforce. What I found out was that Akin’s school is in a struggling district, one that’s gotten criticism for lack of planning for student Akin. East High School told us that Akin did get a suitable transition plan but didn’t go into any more details, citing privacy concerns.

Akin was referred to something called a day habilitation program. These are programs that offer companionship and a structured way to spend the day.

Joanie Warren
We was seeing three different day hab places. So we took him to them, let him get a feel — so we picked out Scottsville Road, where he’s gonna be attending.

Karen Shakerdge
This is Joanie Warren again, Akin’s mother.

Joanie Warren
So that’s what his plans is. He’s not going to sit home and do nothing. So, yeah, he’s happy about that.

Karen Shakerdge  
And are you happy about that?

Joanie Warren
Yeah, I want him to be doing something. Not just sitting home doing nothing.

[sounds of day hab room, sounds of a video tape]

Karen Shakerdge
At Akin’s day program, the day is just beginning. The group is sitting around watching a DVD about employment.

Karen Shakerdge on tape
So what do you guys do? What do you do on a regular basis?

Akin Johnson
Well, on a regular basis, we usually go to Meals on Wheels, which is at, which is at 11 … I’m not sure.

Karen Shakerdge
Besides delivering food with Meals on Wheels, they do things like cleaning libraries and firehouses. The idea is to work on job skills. That day the Meals on Wheels route was not wheelchair accessible, so Akin went down the street to a church.

[sounds of vacuuming]

Akin Johnson
The windows, I got to wipe down these windows. They got all kinds of stuff.

Karen Shakerdge
The group doesn’t get paid because they’re considered volunteers.

Akin Johnson
Ha! Y’all putting me to work today, huh?

Man in background of the scene
Of course we are! Isn’t that what you’re here for?

Karen Shakerdge
The agency that runs Akin’s program says every year a few people leave their day programs for work opportunities.

Karen Shakerdge
Akin, how do you feel about this kind of work?

Akin Johnson
It’s good. I don’t mind doing it.

Karen Shakerdge
You don’t mind it?

Akin Johnson
Mm-mm … I need another paper towel. This one’s dirty, and then I’m done.

Maiken Scott
Karen Shakerdge reported Akin’s story, and she first spoke with Akin for the podcast Exited from WXXI in Rochester, New York.

We’ve been hearing about people’s lives, their experience with disabilities.

Teresa Blankmeyer Burke, a philosophy professor who is deaf, wants to change the way we frame disability. Not as something bad, or as suffering — but as difference. Mere difference.

Theresa Blankmeyer Burke
I like who I am. I like being in this body, I love that I have the ability to take out my hearing aids, and be in silence. That’s a benefit to me. I’m a writer, I’m a thinker. I like being able to block all that out. I like the experience, sometimes, of walking through the woods in silence. And I like the experience of putting on my hearing aids and listening to things I can’t quite decipher. And, to have these options is a part of what it is to be a person with with a disability.

Maiken Scott
That’s our show for this week. The Pulse is a production of WHYY in Philadelphia.

This week, we have to say goodbye to our amazing interns Elizabeth Estrada and Abby Holtzman. Thank you for all of your great work!

Our health and science reporters are Elana Gordon, Irina Zhorov, Alan Yu and Liz Tung.  Charlie Kaier is our engineer. Alex Stern is our associate producer. Taunya English is the editorial director.

I’m Maiken Scott. Thank you for listening!