Science Friday - Placebo Effect, Technoableism, Florida Citrus, Neuroscience Music. Sept 29, 2023, Part 2
Episode Date: September 29, 2023The Science Behind The Placebo EffectEarlier this month, a Food and Drug Administration panel concluded that a common decongestant ingredient used in drugs like Sudafed and NyQuil doesn’t work. The ...panel agreed that while the ingredient, called phenylephrine, isn’t dangerous, it doesn’t work any better than a placebo.That made us wonder: How well do placebos work? And why do they work even when people know they’re getting a placebo?Ted J. Kaptchuk, professor of medicine at Harvard Medical School and director of the Program in Placebo Studies and Therapeutic Encounter at Beth Israel Deaconess Medical Center, joins guest host and musician Dessa to talk about what’s new in placebo research. They discuss the benefits placebos can offer for chronic illness management, and when doctors might start using them in treatments. Where Technology Meets AbleismWith all the bad news on our feeds, a feel-good story can be a welcome reprieve. But what happens when that story comes in the form of coverage of disability technology?You might’ve seen the videos online of a person with a physical disability being fitted with an exoskeleton, essentially “wearing” a robot, to help them walk. Onlookers cheer in the background, dramatic music swells, and we get the sense we’re watching something inspirational and empowering—a victory of the human spirit.This might seem like a triumph of scientific innovation, but our guest asks us to look again at what’s actually going on in narratives like this one.Dr. Ashley Shew, associate professor at Virginia Tech, studies the intersection of disability and technology and how our collective fixation on these fancy, supposedly transformative gadgets could be doing more harm than good. In her new book, she coins the term “technoableism” to get to the heart of the matter.Guest host and musician Dessa talks with Dr. Shew about her book Against Technoableism: Rethinking Who Needs Improvement, about what disability technology is, what the future should look like, and even how disability intersects with space travel and climate change. Sour Times For Florida’s CitrusFlorida is known for citrus, particularly its fresh-squeezed orange juice. But citrus trees in the state are struggling. For the last two decades, crops have been struck with a devastating disease called “citrus greening.” And Florida orange production has dropped some 94% over that period. Citrus greening is caused by an invasive insect, the Asian citrus psyllid, which is threatening to wipe out the citrus industry in the state. One of the effects of the disease is a bitter, acidic fruit. Scientists are hard at work devising possible solutions to save Florida’s crop.Guest host and musician Dessa talks with Dr. Yu Wang, associate professor of food science at the University of Florida’s Citrus Education and Research Center, about her recent advances in making infected orange plants sweeter. Making Neuroscience Into MusicWhen composer Sarah Hennies learned about a neurological theory called “motor tapes” from Oliver Sacks’ book Musicophilia, the concept stuck with her for years. The theory comes from neuroscientist Rodolfo Llinás, who posited that many of our thoughts, memories, and physical movements operate via a series of “looping tapes,” with the goal of reducing the amount of energy the brain uses while doing common, repetitive tasks.The concept resonated with Hennies, who is also a visiting assistant professor of music at Bard College. Most of her compositions use heavy amounts of repetition, and Llinás’ theory fit with how she experienced her own memories and the evolution of her identity. Her piece “Motor Tapes” premiered in early August, performed by Ensemble Dedalus.Hennies joins guest host and musician Dessa to talk about repetition in music, how to translate neuroscience into art, and what that pairing can reveal about our bodies and the world around us. To stay updated on all-things-science, sign up for Science Friday's newsletters.Transcripts for each segment will be available the week after the show airs on sciencefriday.com. Subscribe to this podcast. Plus, to stay updated on all things science, sign up for Science Friday's newsletters.
Transcript
Discussion (0)
This is Science Friday. I'm musician and writer Dessa, filling in for Irafledo.
Later in the hour, we're going to talk about techno-ableism and how those seemingly inspirational
videos about scientific breakthroughs might be muddying the real stories of disability technology.
But earlier this month, an FDA panel agreed that a common decongestant ingredient,
phenolephrine, which is found in drugs like Sudafed and NyQuil, doesn't work.
And this pains me as a NyQuil fan, fam.
while the panel agreed that phenolephrine isn't dangerous, it doesn't work any better than a placebo.
Which made us wonder, how well do placebo's work?
And how come they work even when people know they're getting a placebo?
Here to talk more about the current landscape of placebo research is my guest Ted J. Kappchuk,
Professor of Medicine at Harvard Medical School and Director of Placebo Studies and Therapeutic Encounter at Beth Israel Deaconess Medical Center.
Welcome to Science Friday.
Thanks for having me.
Okay, can I ask?
FDA panel's pronouncement on the phenolephrine.
The objection was that this substance wasn't working any better than a placebo.
How did you respond when you first heard that newsbreak?
When I heard that, the question is, how did they know there was a placebo effect?
The data is really coming from two very good randomized controlled trials that tested phenoephrin
versus a placebo.
And there was no difference.
But what was in that placebo is more than just placebo.
placebo effects. Common colds with congestion go away by themselves. The only way you would know
it was a placebo effect is you had a third arm that actually had just watch and wait, no treatment.
And you would say, oh, is the placebo treatment more than nothing? And nothing is not doing anything.
Giving the placebo includes the rituals, the symbols, and the acts of human kindness that are surrounding pills.
That's hugely helpful, and it feels like that was a piece that hasn't been discussed, yeah, in the way that...
It's never discussed.
Okay, so let's dispel confusion.
Can you give me, like, the quick and dirty definition of placebo?
Sure.
A placebo, first of all, is not the effect of an inert substance.
Inert substance don't have effects.
Placebos are what surrounds inert substance or placebo pills that includes rituals, symbols, uncertain,
hope, and acts of human kindness. That combustible mix sometimes and some people makes people get better.
And that's what a placebo effect is. Okay, so it sounds like what you're doing there is differentiating an inert
substance that I might receive in that ritual environment of a doctor's office with the care,
the consultation, the expectation from, you know, an inert substance that's like eating a red
skittal by myself. It really has to be sort of loaded with that cultural freight. Is that right?
Yeah, I'm going to say that does it be.
too much loaded because especially when you're dealing with chronic pain patients, which I think
placebos are mainly helpful for, is just encountering of supportive, kind doctor and just normal
routine care actually elicit a placebo effect. And I think when most of us think of the placebo
effect, we often do think of that inert substance. We imagine, you know, a little white pill
with no medicine in it. What are the other form factors that a placebo can take? I mean, anything that
essentially doesn't have any impact on a patient's condition could be called a placebo.
Honest placebos don't have side effects. The dogma in medicine has been, since we began using
placebo controls, is that if you know it's a placebo, you won't get a placebo effect.
You have to fool, conceal, or deceive patients to get a placebo effect.
Honest placebo, what's usually called open label placebo, is giving patients placebo pills and telling them
It doesn't have a pharmacological effect, but in some people, some of the time, just taking the pills, even if you don't believe it, even if you think it's crazy, will sometimes make the mind, reformulate signals, perceptions, or symptoms, and may have benefit from a person. That's what honest placebo might mean.
I think that's really counterintuitive and fascinating for most of us. It's totally counterintuitive. Our patients say, you must be kidding. And we say, listen, you don't have to do this if you don't want to. And we're trying it out.
And if you decide to be in our study, all you have to do is take it twice a day for a number of weeks of the study.
And people find it really hard.
And we have to tell people that, listen, this does not mean it's in your head that you're getting placebo response.
In fact, the body has an internal pharmacy that releases neurotransmitters like endorphins, cannabids.
We know it activates specific quantifiable areas in the brain that actually change.
how you perceive symptoms.
When you talk about an honest placebo, I think I've also heard the term open-label placebo
where the patients who are receiving it know it's a placebo.
Is that one way to address what might be like complicated ethical issues in providing
people in inert substance?
Yeah, open-label placebo is the usual way our team described an honest placebo.
And basically, it is being very clear with absolute transparency and honesty that what
what we're giving you is a placebo.
And you don't have to believe it expected or hope it's going to help.
And placebos have been tainted by the trickery, by deception, by concealment.
And the idea that placebo pill with no active ingredient can still have benefits,
can still have impact on patients for their benefit is against the traditional dogma.
And it's only in the last 10, 15 years that the evidence has been accumulating
that placebos can benefit patients,
even when they know it's placebo.
And the reason that's really critical ethically
is any form of open label placebo
is a transparent, honest,
have full informed consent.
There's no deception or concealment.
Placebo is a really a tricky thing.
They've been tainted by a myth or a superstition
that they work because you think you're going to get better.
It's actually deeper than that your body is doing something
that tells it it can modulate the symptoms.
Turn down the false fires of many chronic symptoms
and actually deliver some comfort.
And just to be clear, I think when you talk about, you know,
this tainting of our association and our understanding of placebos,
you're talking about the deception that was involved
when we would provide an inert substance to a patient
who didn't know that they were receiving an inert substance.
Is that correct?
Absolutely.
Or concealed in a randomized controlled trial, which is ethical,
but it still has this idea of trickery.
Okay, so in your studies more generally,
can you tell me when and how are placebo,
most helpful in medicine? And what are the limits?
Placebos don't shrink tumors. Pacebos don't help malaria. What
placebos are especially good for it is chronic illnesses with chronic symptoms. And what
happens is many chronic symptoms are really the brain and the nervous system being hyperactive,
almost like a false alarm. And it amplifies the symptoms that we have. And what happens is
with placebos when taking the placebo, not thinking about placebos, but taking
placebos, being that ritual, the brain gets some feeling that it should turn down the volume.
It doesn't have to amplify or increase the signal. And that's, it's really a form of changing
what the message is that the brain is interpreting in terms of discomfort. And it's mainly
chronic symptoms that I think you have placebo effects. There are others, but that's the main
place you see large, consistent placebo effects. So one of the studies I know that you've been
personally involved in explores the promise of placebo treatment in patients who are receiving methadone
to treat opioid addiction. And I know that that works with an honest placebo. So it's one where
patients are aware of the fact that they're receiving placebo. But can you describe that study and what
you found so far? Yeah. That's a really exciting experiment. The first author,
responsible investigator is Annabel Belcher at the University of Maryland. I was the last author and
supportive character, but she deserves all the credit. What was interesting about that study,
many things were interesting, was that we used open label placebo and half the patients received
their absolute usual care. Half the patients received their usual care plus placebo. So it had
an open label in it. But also we added conditioning because it's very easy to condition with opioids.
the same way that you condition with pad's loss dogs. You give them food with a bell, food with a
bell. The third time, just give them the bell. They get the same reaction. So in this experiment,
we were hoping, and we did find that we gave them the methadone, an opioid, plus the placebo for a week
or two, and eventually we're hoping that the fake pill would have the effect of the opioid. And to our
surprised if 100 patients were able to stay in the methadone program much more than people without
the placebo pill. We filed them for three months. And the reason it was important, the main problem with
most methadone programs is people drop out. Much fewer people dropped out of the program because of the
placebo pill. Blue my mind reading that study. That was like a pause, point at the computer screen,
and like mouth along with the words to realize that first of all, I hadn't been familiar with
a conditioned open label placebo. So you're providing patients with a methadone pill alongside a placebo
hoping to create them that association, just like in the Pavlovian motto where you ring a bell,
you ring a bell, you ring a bell every time you serve dinner. And essentially the bell itself
elicits that salivary response. And it sounds like at least in this first population,
you're finding that the reported symptoms of the opioid users, they're lessening.
There's some relief in the symptoms that they're hoping to treat.
Is that right?
Yeah, I want to say that open-label placebo plus conditioning is much newer.
There's been at least a dozen trials showing that open-label placebo, compared to it, no treatment or usual care,
has a significant impact on illnesses like low back pain, behavioral bowel syndrome, migraine headache, knee osteosophobes.
arthritis, pain, cancer-related fatigue, even menopause, hot flashes.
And you've been studying this field of research for a long time.
Can you tell me what is the most surprising finding of the past few years?
Like, what are you most excited about now?
I'm still hard counterintuitive to me on some level because I believe the myth that
you have to trick people to get placebo effects.
I'm still amazed at the fact that we're getting these effects.
and hopefully, hopefully we'll be able at some point to use them.
And do you think doctors will ever use these placebos fully?
I want to tell you it's going to be slow.
You will need more research to convince people.
And doctors' self-identity is related to we don't use placebos.
That said, I recently had conversations and hearings with the FDA,
and I'm pretty sure there's not any regulatory barriers to using it.
A little more clarification is going to happen,
but that's clearly what's happening.
And basically, it conforms to the AMA's code of ethics.
So I think it's going to be slow process, but I'm hoping that for people that have not gotten benefit for very common symptoms like low back pain, migraine, utero bowel syndrome, cancer-related fatigue, that at some point people will see that after the third failure or drug, maybe we should try a placebo.
Professor Kappchuk, thanks so much for taking the time to talk with me.
Thank you so much for inviting me.
That was Ted Kappchuk, Professor of Medicine at Harvard Medical School.
After the break, we'll talk about the pitfalls of techno-ableism and how the flavor of Florida's oranges might be changing.
This is Science Friday, and I'm your host, Dessa.
For all the dark content on our news feeds, humans can get real eager for a feel-good story,
and we are sometimes too eager to find one in the coverage of disability technology.
You might have seen videos online of a person with a disability being fitted into an exoskeleton,
essentially wearing a robot to help them walk.
Onlookers might cheer in the background, dramatic music swells,
and we get the sense that we're watching something inspirational and empowering,
a victory of the human spirit.
This might seem like an absolute triumph of scientific innovation at first blush.
But our next guest asks us to look again at what's actually going on in narratives like this one.
Dr. Ashley Shoe studies the intersection of disability and technology
and how our collective fixation on these fancy, supposedly transformative gadgets
could be doing more harm than good.
In her new book, she coins the word techno-Abelism to get to the heart of the matter.
Joining me now is Dr. Ashley Shoe, author of Against Techno-Abalism,
an associate professor at Virginia Tech, based in Blacksburg, Virginia.
Welcome to Science Friday.
Oh, thank you so much for having me, Dessa.
Will you walk me through the basics of techno-Abelism?
Yeah, so abelism is a bias against disabled people and towards sort of non-disabled ways of life.
And techno-Abalism is like one sort of strand of abelism that we see, like I see as someone who studies technology and science,
so often in our narratives about what it means to do good and humanitarian work in the world.
But often sort of our narratives about technological infrastructure and new technologies,
especially when they're aimed at disability, get lauded as necessary and empowering for disabled people,
as if being disabled itself is something to fight against and to always devalue so that being a disabled person,
experiencing joy and normal things in life becomes something that's always like spoken.
up against by our scientific and technological enterprise.
It means that so many teams are lauded for their humanitarian work, often without ever talking
to disabled people who might use their devices.
This becomes a real problem for just existing as sort of an okay, regular disabled person
in the world.
And when did you start thinking about this?
Because you coined the term techno-ableism, right?
I did, and I coined it a number of years ago.
So I became an amputee 10 years ago.
I also became heart of hearing.
I have tinnitus.
I have chemo brain, which I'm going to forget.
And then I also got a Crohn's diagnosis a few years after all of these things
sort of happened to me in the same year around 2014.
And as I was becoming disabled, I knew three months ahead of time that I was getting an amputation.
And, you know, people would tell me, you know, think more positively.
But it was coming.
I had a very large bone tumor.
And so many of the things that I was sent and that people wanted to tell me is that prosthetics are so advanced now, right?
All the stories they've heard in the media is, you know, this idea that prosthetics are so advanced and I'll be restored back to normal and I'll come back better than ever.
It wasn't until I talked to different prostitists.
And the conversation was not about like how I'm going to be better than I ever was.
It was that things will always be different from here and out.
The sort of normalcy that I was used to will be changed.
My normal will be very different.
And this is something that, you know, for the rest of my life, I'll get out of bed and I'll
put on a liner and then I'll put on my leg.
And then if it's not fitting right, then I'll readjust everything.
And it'll be, you know, the first thing I do in the morning, the last thing I do at night.
You know, if things are going well with the technology, that's the hope, right?
But it was never going to be the same again.
And we never see narratives like that represented in wider culture, even though it's something
I hear in disability community often, right?
the idea that things might never be the same is, you know, sometimes presented as unsettling.
And that's why you should, you know, take all of these preventative measures against disability.
You know, when we're talking about how technologies are poised and positioned narratively, right,
rhetorically against disability, I think it does a real harm to talking about what it is actually is to live with these technologies over time,
about maintenance, about manufacturers, not producing the right parts, about wear and tear on your
cyborgian components.
I think I hadn't really considered the entire class of disability technology as a field before
being alerted to it by your book.
Can you explain what is disability tech for people who might not be familiar with the
parameters there?
When I'm talking about disability tech, particularly, you know, that which gets framed in
techno-ablest ways, it's often, you know, high-tech, bionic devices, usually exoskeletons,
prosthetic legs, different types of retinal, neural implants, cochlear implants among them,
sort of less explored in the literature is things like pacemakers, which are also disability
technologies, things like things that are outside of me like ramps. Those are disability technologies
and I even think about like the technologies we create for ourselves. So I think about sort of
neurodivergent communities creating weighted blankets, OXO grippy handled kitchen gadgets,
designed by Betsy Farber for her arthritis.
All of these things are disability technologies.
The ones that I think get, you know, the most attention
are usually ones that cost a lot of money,
have lots of computerized components,
and require the sort of maintenance that most people can't DIY.
You also, you made a mention of some games
that have had particular residence
with some members of the disability community.
You mentioned like Pokemon and Dungeons and Dragons.
Can you describe what?
why you referenced those in your book?
So I referenced those in the book
because I'm talking to other people.
I don't know that I would have come up
with that on my own,
but we had a panel of autistic people
talking about autistic technologies
a couple years ago.
And the sort of conversation
that ended up unfolding
wasn't really about
any of the technologies
that you would think about.
I love that this was the result.
But instead it was about
what sorts of technologies
actually help people
not just feel included,
but like they're making
like an impact on one another, what sort of things help bond and gel.
And they ended up talking a lot about Pokemon and about D&D.
And also about discord like emojis that helped express emotion.
You know, for people whose emotions might be harder to read on their face for
neuroticpical people, like to have those sort of things where you could actually like
create your own reactions and use the features of discord in a way that help you express emotion.
And, you know, when you talk about the way in which disability tech is crafted, you've been real clear about the fact that designing with is better than designing for.
Can you describe some of the, like, approaches in development?
Like, where does innovation go off the rails?
And why are we sometimes romanced, you know, by the stories that I mentioned at the top of the segment, right?
These like, wow, she can walk again.
What are we getting wrong?
I mean, these glamorous stories often interview only engineers and scientists or the caretakers of disabled people.
You rarely see disabled people interviewed and quoted.
And if they do, it's usually like a very short quote in these stories.
You know, at the front, sort of when we think about where disabled people get recruited into science projects,
is often at the level of human subjects research.
And so much needs to come before that.
You're already at the point where you are testing something that you have a clear idea of how you would like it to be used.
And you're sort of testing along the lines of use and you've already created it with particular possibilities.
And that's like way too late in the process to be consulting the communities that in theory you think you want to work for.
Usually, I mean, sometimes people are working on things and trying to find a community for it.
I think that looks a little different.
I mean, so many of these news stories are like about ultra high tech, like sexy technologies.
And we don't get the technologies that disabled people might care a lot more about.
So particularly in the case of exoskeletons, you know, a lot of people who would be potential users.
And of course, exoskeletons are posed as solving the problem of not walking.
Not walking is only a problem when there are no ramps, right?
when we don't have the right infrastructure to include, you know, wheelchair users,
but plenty of people are using wheelchairs because they need to sit down more often, right?
Not everyone is paraplegic or quadriplegic who's using a wheelchair.
You know, people with different like fainting disorders where they might, you know,
fall down and hit their head and it would be better to use a wheelchair than get a severe head trauma.
Right?
There are these sorts of tradeoffs sometimes in thinking about how to use the technology.
So I think it really like misunderstands the group that this is for.
And then a lot of, you know, people who would be aimed for like paralyzed wheelchair users would also say, you know, we'd love to see more research about bowel and bladder health.
This is a thing the bad cripple Bill Peace wrote a lot about, you know, critiquing exoskeletons as being humanitarian cover for military projects and not about disability at all.
Ooh, that is a heavy, heavy point.
And, you know, when you talk about the feel,
and maybe also society at large being too excited about these like super high-tech, sexy, mega-glamour stories.
What are the actual needs?
Like, can you differentiate it?
You wear a prosthetic.
So if someone were to ask you, hey, what innovation would be helpful?
It sounds like you're not going to answer with like a chrome-plated exoskelet.
No, I actually really like the leg I have.
I mean, I think a lot of the conversations among amputees.
about prosthetics. And I will say the vast majority of amputees are like amputees. So I am speaking in a
very like a much more narrow way. In fact, you know, issues with sweating are usually at the top of
the list that we are filling our gel liners with sweat each day and taking it out very carefully
so you don't get liquid places, especially when you've had a long or hot day. Temperature
control is often a conversation. You know, people want to talk about blister.
care, right? When you have a leg that doesn't fit just right or your body's changed because your body
changes. The technology could be great one day and awful the next day. And it's only because you
ate very salty onion rings at Disney World the day before and now you can't get on your
leg to walk. Real story. Very salty onion rings. We'll do it again. And I'm like icing my leg
and reclining and trying to like get it back to its normal size. I'm in order to spend my second day on
vacation, right? There's things that are just sort of overlooked. The idea that you have a great
technology, so then you're good to go, is just never the real story. Yeah, it's not a complete
account. So, big leap, ready? We're going from salted onion rings to outer space. Okay.
You write in the book about outer space quite a bit, which is exciting because, of course,
that's a passion point for Science Friday. You mentioned the Gullet 11. Will you,
Will you recount that story for us? Oh, yeah. So the Gallaud at 11 are 11 deaf men who were recruited by NASA in the 1960s. And they were recruited and went through all the same astronaut training. But they were recruited because they were particularly good at a particular thing. And the particular thing that they were all great at was not getting motion sick. Because these were, I think, 10 of the 11 were congenitally deaf men. And then the other had lost their hearing very early in life.
and deaf people, just congenitally deaf people, don't get motion sick.
So NASA was like these people are superior.
We need to test out and learn from these deaf men so that our astronauts, you know, aren't heave-hoing in the space shuttle.
So they're recruited because they're superior.
They were never considered.
None of them were ever considered as like astronaut candidates,
but they went through all the same training being jerked around in different configurations.
And the idea was that NASA could learn from deaf people.
even though it wouldn't have considered deaf people for astronaut candidacy.
There's kind of a double standard there, right?
Hey, you've got this asset and skill that we clearly recognize as valuable for space training
and information gathering.
We're asking for your help, but we're not offering you the opportunity to participate
in a more meaningful way in the program.
I know the Gallaud at 11 enjoyed participating in this program.
I won't fault it there.
I mean, women weren't even recruited at the point.
NASA's history, but there is a sense in which even when disabled people do things better,
like have superior skills because of their embodiment, they are still considered inferior, right?
This is ableism through and through, right, that someone whose body configuration might be
like equal or better in, say, zero G.
Then, you know, if walking doesn't matter, right, if you're floating, there's a whole bunch
of disabled people who will be equally good for a sort of mission if we're talking about something
in zero-g. Of course, everyone's disabled in space. If you come back from space, you're going to be
disabled. Your bones are going to be a little bit more lightweight, for instance. The shape of your
eyes changes under different pressure, and of course, the sort of radiation a person gets.
We'll lead for significant times spent in space to greater disability. This is Science Friday from
WNYC Studios. If you're just joining us, I'm talking with Dr. Ashley Shoe, author of
Against Techno-Abelism, about the intersection of disability and technology. And Ashley,
you mentioned an unexpected advantage that ostomy bags might have in space. Would you talk about
that? Oh, yeah. So it's really hard to poop in space. It's difficult creating toilets for the
International Space Station and for the shuttle program was very difficult, often failed.
And sort of the backup, if your toilet fails, is sort of a baggy, a plastic baggie with some sticky
material to stick to yourself, then help the poop out with like a finger bag situation.
This was in the 60s and 70s.
This was the backup.
And they, you know, early missions, if they were short enough, really encouraged astronauts not
to poop. The logistics were difficult. And there are whole like trainers for for like how to use
the toilets in NASA's program. And the thing is my friend Mallory K. Nelson, who is a brilliant
artist and friend, has an ostomy bag. Our whole conversation about space is like, why aren't we
modifying astronauts to have an easier time by giving them ostomy bags, right? It would be,
it essentially is what the backup toilet is, right? Something sticky that you put on yourself.
but it's a lot less refined.
You write that the future is disabled.
What do you mean by that?
And how do you suggest we prepare for it?
Oh, I mean a lot of things by that.
The way I mean it in the book, right,
is not just if we achieve our greatest space dreams,
we're going to be disabled.
But even if we stay close to the planet, we're going to be disabled.
We have, we've changed our climate, right?
Climate change is happening.
It's changing weather patterns.
it's changing disease patterns.
We have higher rates of asthma.
We have ticks in places that they usually wouldn't be.
And Lyme disease spreading to more areas than it existed before.
So there's sort of lots of reasons to think sort of the future, whether we're on planet or off,
is going to be a disabled one, which puts the impetus on us to start doing better at planning for disability
and to expect more disability in the future and not less.
So much of our science fiction has given us the idea that,
The goal of technology is to eliminate disabled people, to eliminate disability, because our visions of the future have often excluded disabled people.
But that's not going to be the case, no matter which way we shake it.
Dr. Ashley Shoe is the author of Against Techno-Abelism, an associate professor at Virginia Tech, joining from Blacksburg, Virginia.
Well, Ashley, thank you so much for joining me.
Oh, thank you so much, Dessa. It's been a pleasure.
To read an excerpt from Against Techno-Abalism, go to Science Friday.com slash disability.
After the break, an invasive species is souring Florida's citrus crops,
how one researcher is trying to save the oranges by discovering exactly which compounds make them sweet.
I'm Dessa, and this is Science Friday.
Florida is known for citrus, particularly its fresh-squeezed orange juice.
But citrus in Florida is struggling.
For the last two decades, crops have been struck with a devastating disease called citrus greening,
and Florida orange production has dropped some 90-4.
in the past 20 years.
Citrus greening is caused by an invasive insect, the Asian citrus silid, and it's
threatening to wipe out the citrus growing industry in the state.
Scientists are hard at work devising a myriad of possible solutions to save Florida's citrus
crop.
And joining me now is one of those scientists.
Dr. Yu Wong, Associate Professor of Food Science at the University of Florida's Citrus
Education and Research Center based in Lake Alfred, Florida.
Dr. Wong, welcome to Science Friday.
Thank you. Thank you for your introduction.
Okay, can we just start with the basics of the problem?
So how does an insect cause citrus greening?
Actually, citrus-graining disease is a bacterial infection disease.
So the bacteria we call CELAS, and the insect carried the bacteria and transmitted to, you know, the trees in Florida.
You know, I've seen, like, images online.
It's kind of icky.
looks as if the infected plants have been covered with like somebody shaving Parmesan cheese, as you would,
like, over a salad. And it affects the way that the fruit tastes as well on those infected plants.
Is that right? That's right. Yeah. How do they taste? Well, the fruit tastes sour, less sweet,
sometimes with bitterness, and the aroma, like the very typical sweet orange aroma decreased a lot.
You're one of many scientists who are working to try to solve this problem.
And I know that some teams are working on curing the disease and others are focusing on breeding disease-resistant plants.
And you're working to solve the citrus greening problem by like mapping the universe of citrus sweetness itself.
Can you explain how your research is focused on flavor modulators?
What is that?
Most of consumers, they like sweet or sweeter thing.
So for our study, we would like to detect many different varieties and to find out what varieties actually could provide that very sweetness perception.
But at the same time, because our consumer also concerned about the health benefit, you know, related to too much sugar consumption.
Therefore, like, we are looking for this flavor modulator.
we try to find certain kind of a compound.
Obviously, they're not sugar, which can enhance the sweetness perception.
Okay, so when you use that term flavor modulator, you're talking about, it sounds like sort of a companion substance to the other flavors that we perceive.
Is that right?
Let's just say some aroma compound, like some very citrusy aroma, they have that naturally characteristic to enhance the sweetness.
But there are also some other compound like the sweetener we're talking about, stevia, for example, that's kind of a natural sweetener.
So there was some swinner existing in the citrus, and it could also provide that sweetness perception.
There are also some other compound.
They are tasteless.
So when you mix those compounds with sugar, they somehow enhance the sugar's sweetness perception.
Okay. And which of these flavor modulators are at play in the citrus world?
Well, so far, like, we have been identified a certain kind of flavonoid-based structure compounds,
and those compounds, they either taste sweeter or they could enhance the sweetness of sugar.
How do you go about trying to solve the problem of these infected citrus trees?
Like how do you apply that research to the problem at hand in Florida?
You know, there are two major varieties has been used for the juice processing.
And right now, due to the quality change and less sweetness in the juice from those two varieties,
our idea is to blend more varieties into our juice pipeline.
So those new varieties can be used in blending is some varieties we're considering,
containing those sweeter or sweeten enhancers.
So that's somehow like when we blend those varieties with the current variety,
it could increase the sweetness perception,
but at the same time it won't increase too much sugar in our juice product.
Is that done only with healthy plants?
Or is it also the case that you're finding that some of the research you've done
is useful for growers who already have infected crops?
Well, yes, certain kind of variety right now growing in the ground also containing those swinner.
So right now the question is how much we can increase those swinner and sweeten enhancer in the current existing variety.
So that's probably need some specific pre-harvest treatment or different combination of nutrient treatment.
But that research is an ongoing research.
I know that you've studied all different types of citrus in your work.
Do you think that we're likely to see more varieties of orange juice, citrus juice on the shelves sometimes soon?
Well, definitely that's what we hope for.
Our breeding team at University of Florida, they're having, I don't know how many, maybe 10,000 or even more than 10,000 varieties.
But in the market, that's probably just like 3 or 5 varieties.
You can think about the potential.
Okay, so before I let you go, can I bother you for an inside tip?
What is the sweetest best orange juice that I'm not yet looking for on the market?
So, well, like I said, right now the orange juice are using two varieties, Hamelin and Valencia.
So the juice is blended with probably 20% of Hamelin and 80% Valencia.
So Valencia is a very sweet.
and aromatic varieties.
Thank you so much for your help in helping us understand this issue
and the work that's being done to address it.
Thank you.
Dr. Yu Wong, Associate Professor of Food Science
at the University of Florida's Citrus Education and Research Center
based in Lake Alfred, Florida.
A few years ago, I partnered with an fMRI lab
and a neurofeedback practitioner,
and we ran a little experiment to try to help me fall out of love.
If it worked, I figured I'd finally be free.
from the old flame, and more interesting as a songwriter, with attention to turn to something
other than torch songs. I recently learned about another musician who also integrated neuroscience
and memory into her work. Sarah Hennies is an award-winning composer and visiting assistant professor
of music at Bard College. Her work has been performed at MoMA PS1 in New York and at international
festivals, and her new piece, motor tapes, performed by ensemble dedalus, takes its inspiration from
a neuroscientific theory of the same name. Here is a brief clip. And now, to tell me about the
neuroscience that inspired the piece is its composer, Sarah Hennees. Welcome to Science Friday.
Thank you. Happy to be here. Super stoked to have you. Okay, so this piece was inspired by a PBS special
you saw about Oliver Sacks and music research. Is that right? It was, yeah. It was a TV version of his
book, Musicophilia, but the part that inspired the piece specifically is
this brief scene where sax is hooked up to a brain scan, and he's saying how he's always loved Bach, and he's never liked Beethoven.
And they play him some Beethoven, and his brain just sort of looks normal.
And then they play him a highly equivalent piece of music sound-wise by Bach, and all of a sudden his whole brain lights up.
This is your Bach brain, and this is your Beethoven brain.
Sorry, Ludwig.
Yeah, sorry, Ludwig.
There's not much there.
And so one of my questions always has been like, well, what is that?
Like, why would his brain respond so much to one piece of music and then not at all to some, you know, really similar thing?
And so that's part of what inspired this piece.
I mean, it sounds like your brain lit up watching Oliver Sacks' brain remotely on PBS.
That relates specifically to this neuroscientific concept of motor tapes, right?
That's the name of your piece.
And it sounds like that was the direct neuroscientific inspiration.
Can you describe for the uninitiated what are motor tapes?
Yeah, his name is Rodolfo Yianos is a neuroscientist.
And Sacks quotes this theory called motor tapes where Yonaz theorizes that the brain is a giant mass of constantly running tape loops.
And that our decision to have a thought or move a muscle or anything is our brain calling up the tape related to those actions.
Like, for instance, if you want to use a group of muscles at the same time to, like, walk, then that is your brain voluntarily choosing to call those loops up.
But then one of the big inspirations of the piece is that part of Sax's book is about earworms and how the phenomenon of getting a song stuck in your head just over and over and over again, particularly what interested me is for no reason.
That, to me, there seems to be a correlation between the earworm and this theory of repetition.
and like I read the description of motor tapes to a friend of mine when I first heard about this.
And he just started laughing.
And he was like, you don't even need to write the piece.
Like this is just describing music.
Like he even uses the phrase random motor pattern noise generator.
And it's like, well, there you go.
There's your piece of music.
Okay.
So if I get it right, and you've got this theory from Rodolfo Linas, who's talking about
these looping background kind of brain activity that even if we're unaware of it, there's these
constantly repeating signals that only then selectively rise to our conscious attention. I know music
makers spend a lot of time thinking about how to balance repeating loops, you know, even just like a
familiar chorus, with new motifs. How do you balance and how do you think about repetition in your
own work and in this piece? Well, I've been working almost exclusively with repetition since, I guess,
over 15 years now. But prior to 2021, most of my work would be these just long, long, long,
repetitions of really simple material. At first, it was single sounds and then single patterns.
Like, I have a piece called The Reinvention of Romance. That's an hour and a half piece for cello and one
percussionist. And the whole thing is just three or four minutes of a repeating pattern and then
another one, and then another one, and then another one. And it was like, when I read the description of
motor tapes, it was just like, this is what I'm doing. And then while I'm writing this piece,
I thought, well, gee, our bodies are repetitious, our breathing and the way we walk and the way our
eyes blink and the way our heartbeats are all repeating loops. And so it was when I read the
motor tapes thing, it wasn't exactly that I thought, oh, I can do that. It was more I read it and I said,
I recognize this. You mentioned that like in this piece there are certain actually lived memories
that are represented. Can you give an example of one? Yeah.
A huge part of this piece is based on this memory I have from being a really young child,
like I think five years old.
And I had just learned to ride a bike.
And I just have this persistent memory that always comes back to me my entire life at random times.
So through the Yenos theory, that loop is being called up involuntarily of the bike that I got had a radio on it.
And this is in the 80s.
And I can see it.
I have this vivid memory of riding up and down my street.
street with the song I Want to Know What Love is by Foreigner on the radio.
Oh, man.
And, you know, that song is ubiquitous.
It's on the radio all the time.
And every single time I hear it, I remember that.
And then, of course, I have also had the question for years of why do I remember that?
It wasn't special.
At least it didn't seem special.
It just was like, I just remember it.
And this is what I'm so interested in is trying to answer that question of, like, why?
I genuinely like just straight trying to understand myself and that I've done this a lot that I feel like by putting these kinds of things into artwork, then you can sort of see them objectively. And I've learned a lot about myself that way. Like not just as an artist, but like as a person. Yeah, totally. And so in ways it feels like you're just sort of born in a machine that you then reverse engineer to figure out how on earth that's working. And yeah. And I feel like my practice is based almost entirely on trying to. And
to, like, decode my identity.
Like, I'm trying to pull something out of me
rather than create something out of nothing.
Hmm.
Hmm.
You know, quick sidebar, first of all,
just to say, having a radio on your bike in the 80s
was a serious flex.
You dropped that real casual,
but please know that it was jotted down
in points of worded.
What do we, what do you think that when we're listening
to music that focuses on repetition
in the way yours does?
Motor tapes, specifically, like,
what do we learn about our bodies?
and about science, do you think, from investigating those loops?
Like, is there some fundamental truth about repetition and our organic selves?
You know, everyone has a relationship to repetition, whether they know it or not,
that it's pervasive at literally every level of society and our bodies down to the most basic physical and biological activity.
I recently read in a book called Sound by Michelle Chion that the earliest sense experience,
of a fetus is that of the overlapping repetition of its own heartbeat and the parents' heartbeat.
And again, it's like, oh, the thing that I'm doing is at the deepest possibly embedded
human phenomenon that the very first thing we experience is these overlapping heartbeats,
which is how the piece starts, that has this sort of electrical pulse sound and then this
very low, soft bass drum thing that is not reminiscent of a heartbeat exactly.
I'm freaking out because this is so interesting. And then like even after we're in the world, I mean, this this kind of relentless cycle of repetition. Yeah. For me, the reason I got so excited about this kind of work in the last couple of years is because I recognized this repetitive behavior I had where I would like repeat stories to people that feel really insignificant or something. And then it would be years later where I would think, oh, that's why I'm.
into this. And a perfect example of that is that about 20 years ago, I was on tour with my old
band and we were playing a show in Albuquerque and staying at a friend of my guitar player who was a
mathematician. And I had had this conversation with her that I just, I repeated the story to so many
times that it was just so funny that she had said, yeah, I came up with this award-winning theory
while I was on ecstasy. And that's a funny story, but it's not that funny. Like, it's not a
repeat it for 20 years kind of story. But it was only probably a decade later that when I started
thinking about my gender and when I started transitioning, that I realized that this person was the
first trans woman that I had ever spoken to. And so it's like my brain remembered that for that
reason. And it wasn't until I had to kind of decode it later that I realized why I was telling
people this story all the time. And so that experience is really like fundamentally
forms this piece motor tapes.
Man, thank you so much, Sarah, for taking the time to talk to us about this piece.
My pleasure.
That was Sarah Henney's composer and scholar.
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