Guest Bio:

Pepper Stetler, PhD, is the author of A Measure of Intelligence: One Mother’s Reckoning with the IQ Test. She writes extensively on issues facing people with disabilities and their caregivers. Her writing has appeared in the New York Times, Slate, The Atlantic, and The Wall Street Journal. Pepper is also a professor of art history at Miami University in Oxford, Ohio.

On the Podcast:

A Measure of Intelligence: One Mother’s Reckoning with the IQ Test by Pepper Stetler

Alfred Binet

DSM (Diagnostic and Statistical Manual of Mental Disorders)

Henry Goddard

Connect with Dr. Stetler on her website (pepperstetler.com) or X (@PepperStetler).

Watch this conversation on YouTube by clicking here. 

Note: This transcript is autogenerated using speech recognition software and does contain errors. Please check the corresponding audio before quoting in print.

Amy Julia Becker (00:05)
I’m Amy Julia Becker and this is Reimagining the Good Life, a podcast about challenging the assumptions about what makes life good, proclaiming the inherent belovedness of every human being and envisioning a world of

Today my guest is Professor Pepper Stetler, the author of A Measure of Intelligence, One Mother’s Reckoning with the IQ Test. Pepper is a professor of art history at Miami University in Oxford, Ohio. She is a prolific writer whose work has appeared in the New York Times, Slate, the Atlantic, the Wall Street Journal. Pepper is also a mother, and it’s that combination of intellectual curiosity and motherly love that makes me so excited for you to hear our conversation.

We talk about intelligence and IQ tests and intellectual disability and being parents of children we love and how we might be able to expand both our understanding of what it means to gain an education and also what it means to value one another as humans. I do have one announcement. To celebrate Down Syndrome Awareness Month, I have partnered with Noonday Collection and Artisans in Guatemala to bring you the lucky few hand beaded bracelets.

It’s designed by my fellow Lucky Few mama, Micah May, and $5 of every bracelet sold goes towards creating job opportunities for people with Down syndrome living in Guatemala through job skills training at the Margarita Tejada Foundation. So you can wear this bracelet and be an advocate all at the same time. There are limited quantities available and the link to purchase is in the show notes. And now to my conversation with Pepper Stetler.

Amy Julia (01:46)
Well, I’m sitting here today with Dr. Pepper Stetler, who is the author of a wonderful book that I’m so grateful I got the chance to read, but even more so that I get to talk with her about, it’s called A Measure of Intelligence.

One mother’s reckoning with the IQ test. So Dr. Stetler, welcome to Reimagining the Good Life.

Pepper (02:05)
Thank you, Amy Julia. Please call me Pepper and I’m thrilled to be here. Thanks so much for having me.

Amy Julia (02:11)
Well, I’m delighted, delighted to have you. I am someone who really loves books that are both, they read like memoirs, like they read like a story and teach me a lot and get me to think a lot. And your book falls squarely into that category. So I deeply appreciated it. And I thought maybe we could start actually where you begin the book. You begin with a story about a meeting you had with your daughter, Louisa’s teachers. And I thought,

Pepper (02:19)
Yeah.

Right.

Amy Julia (02:35)
Perhaps you could just bring our listeners into that scene because I think it introduces you and Louisa and this topic of intelligence and IQ tests in a pretty beautiful way. So could you just start us there?

Pepper (02:47)
Of course, thank you. right, I start the book with really, think, authentically where my idea for this book actually started. It was when my daughter was just about to start kindergarten. Her name is Louisa, and Louisa has Down syndrome. to start kindergarten, to get her started in that process,

we needed to have an IEP meeting, her first IEP meeting, which stands for an Individualized Education Plan meeting, which is a document that basically outlines the kinds of supports that someone like Louisa might need to be able to access a classroom with her peers. I wasn’t sure about…

Now I feel like a total pro about doing these IEP meetings basically, because they happen once a year, but that was our first one and I didn’t really know how it was going to go. But I know that she had had some cognitive testing to, I guess, provide some sort of information about what she knew and to get to know her a little bit, I guess, through this test. anyway, at the IEP meeting,

the school psychologist kind of presented her test results, which were now I know much more about them were IQ tests to us, to my husband, Andrew and I. And there were other people in the room. There were her preschool teachers, a kindergarten teacher, some other people from the school. And I just kind of…

There was something that clicked for me at that moment where it just seemed as if I was like, really? This is what we’re doing. We’re doing IQ tests. OK. I hadn’t really thought about it until this moment. And so I had all of these. I knew a little bit about how IQ tests seemed kind of weird in the sense that I had associated them with like

eugenics in the early 20th century, but only kind of vaguely knew anything about that at this point. So I was like, okay, we’re doing this, like this, okay. another thing that happened that I found really unsettling to me was that her results of this test were presented to me and the school psychologist kind of said, know, they’re…

Her IQ is low for somebody in the general population, but it’s actually high for somebody with Down syndrome. And there was a part of me that kind of went like fist pump, yes, kind of like, yeah, I’ve done something right. And then when I reflected on that a little bit more afterwards, I was a little disgusted with myself for.

Amy Julia (05:17)
Yes.

Mm -hmm.

Pepper (05:28)
how I responded. Like I was confused about what this IQ was actually supposed to mean to me. I didn’t know much about how this was going to affect Louisa’s life. And it all just started from there. know, I think I was using…

Amy Julia (05:41)
Yeah.

Pepper (05:47)
writing and researching as a way to kind of figure this out even before I realized I was writing a book, you know, as a professor. Like this is the way I kind of figure out the world is that I turn to sources and try to get some more information about what’s going on. And then I just found myself like with a lot of words on a Word doc on my computer and like,

I was like, okay, I think I see something here that I might be able to say that’s important that I want to share.

Amy Julia (06:20)
Yeah, which again, I really appreciate it because I’m also a parent who has sat in those rooms and had to make decisions along the course of Penny’s educational career about whether or not to say yes to IQ tests, whether or not to report those scores. And we’ll get into some of the details there in a minute, but I’m curious if you could just give us a little IQ 101 because for anyone who doesn’t know, I mean, there’s obviously, for anyone who doesn’t know in depth, they should read your book.

If you can just give us the little like snapshot of kind of the history and even the history of the idea of intelligence, you know, and that we can measure that there’s a lot embedded in just some assumptions we might have around IQ tests and intelligence.

Pepper (06:49)
Yeah.

Yeah.

Yeah, OK, I’m going to do my best here. the you know, my book really argues that our modern our modern idea of what intelligence is is based in in the IQ test. Like there’s a way in which the test really sort of shaped how we think what intelligence is. And we think of it as something that can be measured and it’s measured through an IQ test. So IQ tests.

emerged kind of in the late 19th, early 20th century. I would say before you have an IQ test, you have to have a conception of normal and the idea of what is normal and judging people and evaluating people kind of based on that idea of normality really emerges with statistics in the late 19th century. And then there’s a guy named Alfred Binet in

Amy Julia (07:37)
Hmm.

Pepper (07:55)
in France who develops tests that are basically based on a sense of age appropriateness, right? So he’s giving children certain tasks and saying like, well, a five -year -old should be able to do this task. Say for example, be able to kind of put a number of beads together in a sequence and recognize a pattern or something like that. And so if a particular child,

Amy Julia (08:15)
Mm -hmm.

Pepper (08:21)
you know, is seven years old and they can’t yet do that task that most normal five -year -olds can do, then that is evaluated as some sort of what they would call back that a kind of feeble mindedness. But if say your child is three or four and can already do this task for a, that’s appropriate for a five -year -old, then it’s, you know, your child is gifted, right? So.

Amy Julia (08:28)
Mm -hmm.

Pepper (08:46)
It starts with Benet and then there are people in the United States that kind of adopt this logic of seeing intelligence and expand on the kinds of testing that’s done. In the 20th century, eventually it kind of merge, there’s a number of IQ tests that emerge. There’s a Stanford -Benet test that’s still around.

There’s a test that have all kinds of acronyms like the WISC, for example, and psychologists will kind of say that they test or emphasize different things. But usually it’s a kind of a subset of maybe about 15 or 16 subtests that make up a kind of full scale IQ score.

Amy Julia (09:22)
Mm -hmm.

Pepper (09:34)
And there’s ways in which usually these subtests test things like short -term memory, pattern recognition, efficiency, and things like that. they’re usually things that make you successful in modern life. These are the skills that make you productive in the modern world. So.

Amy Julia (09:49)
Again.

Pepper (09:55)
There’s a way in which it’s almost a kind of way in which they grow up together, right? Like our sense of success and productivity in the modern world emerges while this test is kind of developing to reinforce in a scientifically objective way as psychologists thought to show us like.

Amy Julia (10:16)
Yeah.

Pepper (10:18)
who’s gonna be successful in the world and who isn’t, right? So there’s a kind of predictive power of IQ tests as well.

Amy Julia (10:27)
Right. That’s a good point. This is a kind of marker of who you are in this present moment that we’re also assuming tells us about your future. And I’m curious if you can speak to the relationship between these IQ scores and quote unquote intelligence and social status or our kind of assumptions about human value. yeah, if we could speak to that and then I want to bring it back to Louisa.

Pepper (10:54)
Yeah, so this is something that really has plagued IQ tests, especially, I mean, in the 20th century, where there is a understanding among a lot of the psychologists that developed IQ tests that intelligence is something that can be measured almost like a biological trait, right? Like a heartbeat or a breath that can be scientifically

Amy Julia (11:18)
Hmm.

Pepper (11:22)
measured. And this leads to lot of assumptions about, say, for example, habitually, people from low socioeconomic status, people of color, especially Black Americans do not do as well on IQ tests as white, more affluent Americans do. And the deeply flawed conclusion from that is like,

people of color, black Americans must not be as intelligent, must have some sort of biological deficiency as part of the race of being black. So there’s all sorts of deeply racist and classist kind of assumptions made that

Amy Julia (11:53)
Mm -hmm.

Mm -hmm.

Pepper (12:10)
It’s a kind of this spiraling chicken or egg sort of argument, right? Where are people that are poor not doing as well on an intelligence test because they are just sort of biologically determined to be that way? Or gee, perhaps maybe it’s because they’re not getting the same educational opportunities as people that are white and affluent are getting in the 20th century.

Amy Julia (12:35)
Yeah, and I’m curious, so now we bring this down into this particular level of, you know, an individual child who’s been diagnosed with Down syndrome, sitting in, you know, preparing to go to kindergarten. And you mentioned and I mentioned just that there’s kind of this almost, I don’t know if it’s an ethical dilemma or if it is a…

pragmatic dilemma, but for parents of whether or not, know, Louisa and in our case Penny takes an IQ test. So I’m curious if you could just speak to why it might be helpful or problematic to get an IQ score for your daughter with Down syndrome.

Pepper (13:00)
Yeah.

Yep.

Yeah, so this is like this was the real bind I found myself in and a kind of, I guess, a sort of narrative thread that I wanted to to carry through the book is like whether or not I’m going to continue having Louisa’s IQ tested. And it’s supposed to happen every three years. But like the thing is, is that

Amy Julia (13:25)
Mm

Pepper (13:31)
Okay, so the IQ test and this IEP that it informs allows her to access a classroom of her peers. It opens a lot of doors to services for her, especially later in life. Say if she is going to need to be on Medicaid, she’s going to need a diagnosis of an intellectual disability and in order to have that diagnosis.

having a cognitive test and an IQ score is kind of part of that diagnosis. So there’s a way in which I worry about closing a lot of doors for her later in her life if we don’t have this measurement taken. at the same time, like it’s…

Amy Julia (14:11)
Mm

Pepper (14:15)
deeply discriminatory that my daughter and Penny say have to be subjected to this kind of evaluation to get what they need. And I don’t, you know, I don’t know, I don’t know my IQ. I don’t have to have that part of my identity quantified and scrutinized in this way in which I found it to be a double standard in a lot of senses. So,

You know, there’s this bind that I think I find myself in and a lot of other parents of kids with intellectual disabilities find themselves in and we’re kind of like obliged to play the rules of this game that seem deeply unfair.

Amy Julia (14:54)
Yeah, and I feel like that’s true for the test takers. I mean, the test givers in a lot of cases as well, like they’re, I think you speak to this. I’ve certainly been in the room with various psychologists who are like, look, I’m not allowed, I know that Penny could answer this question if da da da, but I’m not allowed to do that. So it’s, yes, this is what the test says, but we know in the classroom that actually,

These other things are true about her. And thankfully, I’ve had a team of people in Penny’s life throughout her life that really believe in her, believe that she can learn, want to, they’re doing the motions for the same reason. She needs a diagnosis or whatever designation of intellectually disabled in order to access services. And it’s true, there are ways in which she is intellectually disabled. That’s not a bad thing to acknowledge. And yet,

Pepper (15:31)
Mm -hmm.

Yeah, right. Yep.

Amy Julia (15:44)
to put it as an umbrella term over her being, I think is problematic because there are many ways in which she demonstrates a lot of intelligence that is not disabled in any way. And again, that sense of capacity to learn and grow, I often think we can see an IQ or like a designation of intellectual disability as putting a real cap on the capacity to learn and grow and kind of to say, yeah, you belong in the corner with the iPad.

Pepper (15:52)
Yes. Yes.

Amy Julia (16:11)
while the rest of the students belong in this different place.

Pepper (16:12)
Yeah.

Yeah, I mean, and I’ve had a similar experience where I’ve been really struck by this difference between this bureaucratic umbrella and then the actual interaction of teachers with Louisa in the classroom, right? So to me, I’m honestly still trying to navigate what this all means as we move through Louisa’s life.

Amy Julia (16:31)
Yeah.

Pepper (16:40)
Yeah, there’s a way in which it seems as if we’ve lost that kind of like individualized sense of what education is supposed to be about helping somebody grow, right? And helping somebody learn to be their happiest and most fulfilled self rather than a kind of

Amy Julia (16:59)
Mm.

Pepper (17:00)
placement, right? Like education in many ways, and I see this through Louisa and I see this through my college students becomes a kind of sense of class, socioeconomic class placement, right? Either you’re in this class or you’re in the gifted class or you’re going to this college or you’re not going to that college. And it’s become this achievement of a kind of quantified number instead of

Amy Julia (17:20)
Mm -hmm.

Pepper (17:28)
deep, meaningful learning in other ways.

Amy Julia (17:32)
And I think one thing I was really struck by in your book is you, so first of all, it’s really interesting that intellectual disability shows up in the DSM, the kind of manual for psychologies of disorders, right? And so that in and of itself has its own value judgment on this as like kind of psychiatric disorder that requires addressing or treating or something like that. So it’s there.

Pepper (17:42)
Yeah, right.

Right.

Amy Julia (17:56)
But then you also point out that the American Psychology Association, this is a quote, has issued an apology to people of color for its role in promoting and perpetuating racism and human hierarchy in the United States. But it has never issued a similar apology to people with intellectual disabilities for the field’s role in eugenics and the use of IQ tests to perpetuate such a deeply immoral approach to psychological research. I wanted to ask you just to comment on

Pepper (18:21)
Right.

Amy Julia (18:24)
why the association may not have ever issued that apology, why intellectual disability shows up in the DSM in the first place. Yeah, just, you if you could unpack that a little bit for us.

Pepper (18:35)
Yeah, sure. I I would like to have a psychologist answer that question, obviously. you know, disciplines have histories, right? I am trained as an art historian and art history has a history of, say, stealing things from other cultures and bringing back them back in some pretty immoral ways. And psychology,

Amy Julia (18:39)
Yeah

Pepper (18:58)
even though it thinks of itself as a science or a social science, also has a history. And I think I would like psychologists to read my book and be compelled to reckon with that history a bit more. think perhaps because it sees itself as a social science, it gets away with not thinking about its history much, at least as much as I would like it to do.

Amy Julia (19:10)
Mm -hmm. Mm -hmm.

Hmm.

Pepper (19:22)
A reason why I think intellectual disability is in the DSM is just because of history, right? We’re on the fifth version of the DSM now. was first issued, this diagnostic and statistical manual was first issued in the 50s. And you look back at that first DSM and you see all sorts of judgments and classifications and language.

that is completely inappropriate to us today. And I think to me now, I don’t see a similarity between an intellectual disability and say being a psychopath, for example. Maybe a psychologist would see it differently.

Amy Julia (19:52)
Mm -hmm, right.

Hmm.

Pepper (20:09)
but there’s just a way in which there used to be a more kind of large and general sense of not normal, right? Like that the DSM just classified everything that was not normal and didn’t have much of a sense of nuance of like, okay, so what is, is having an intellectual disability really a psychopathology?

Amy Julia (20:23)
Yeah.

Pepper (20:35)
Do we really think about it that way? I mean, and there’s other complicated things here that I’ve thought about in the sense that like Down syndrome is something that is fairly easy to diagnose these days, right? Like you get a karyotype and you have three strands of the 21st chromosome, but other things that might be part of having an intellectual disability.

Amy Julia (20:35)
Right.

Pepper (21:01)
are not autism, for example, there’s no kind of objective proof, I guess, of having it. And so I think psychologists turn to things like the DSM to try to find a kind of standardized sense of diagnosis for things. But nonetheless, it still seems strange to me and certainly informed by history.

Amy Julia (21:02)
Right.

Mm -hmm.

Pepper (21:25)
that things like an intellectual disability is part of the DSM today.

Amy Julia (21:31)
Yeah, I agree. And I was actually surprised to even know that like, because one of the things I’ve found in having a child with Down syndrome, both in the kind of physical realm and the psychological realm is that it’s so interesting is because it is more likely that Penny would have any number of both psychological and physical maladies, right? Like more likely to have get childhood leukemia or celiac disease or

Pepper (21:54)
Mm -hmm.

Amy Julia (21:55)
In her case, she actually did get scoliosis. But it was also one of those things where I’m like, okay, so 3 % of girls with Down syndrome get scoliosis, 1 % of girls in the general population get scoliosis. Like this is not only true of kids with Down syndrome, it just happens to be slightly more likely. And the same is true, perhaps with some, you know, whether it’s, well, I actually, I don’t know, the overlap. I know there is like a higher rate of autism for kids with Down syndrome.

Pepper (22:08)
Yeah.

Amy Julia (22:21)
than the general population, it’s still the majority of kids with Down syndrome do not have autism. And so it seems to me that that sense of there’s gonna be an overlap perhaps between intellectual disability and some other things you might find in the DSM, as opposed to intellectual disability in and of itself belongs in this set of disorders, which I think is what they’re kind of looking for aspects of the human psyche that

Pepper (22:21)
Mm -hmm.

Right?

Amy Julia (22:48)
potentially could be addressed and should be addressed, I guess.

Pepper (22:51)
Right, right. mean, I’m not a psychologist and the book, I’m not trying to kind of feign an expertise in psychology in the book, but from what I’ve understood, seems like a pretty, and diagnosis especially seems like a pretty slippery realm, right? Like you have to diagnose and understand.

Amy Julia (22:54)
Yes.

Right.

Pepper (23:13)
someone through behavior in a lot of cases. And behavior is such a subjective thing, like not only from the person that’s doing the behaving, but from the perception of that behavior by other people. I talk in the book about my just being kind of confounded by the…

Amy Julia (23:16)
Yeah.

Pepper (23:34)
evaluations and the surveys I’m supposed to fill out about Louisa’s behavior as part of her cognitive assessments, right? Like all of these questions about like, does she do this on a scale of zero to five? How many times does she do it? And it’s just, not only is it exhausting, I resent having to look at my daughter’s behavior in such a diagnostic way.

Amy Julia (23:43)
Yeah.

Pepper (24:01)
and see everything that she does as potentially pathological, potentially that there’s something wrong. Whereas if she didn’t have Down syndrome and she did some of this stuff, you know, rarely cleans up her toys, for example, like this would not be seen as a problem, but because she has Down syndrome, like, is this a problem of behavior, right?

Amy Julia (24:09)
Yeah.

Right, right.

Or like somehow a marker of intelligence, like that somehow she doesn’t know that she is expected to. And as you, mean, I’m thinking about some of the children in my house who do not have Down syndrome and whether or not they as teenagers clean up their toys.

Pepper (24:26)
and.

Yeah.

Exactly. Yeah, yeah, exactly. And it just seems to me that our perspective here is really over determined by an idea of normal, right? Like people who are considered normal get away with a lot of stuff that people who are not considered normal get judged and diagnosed and often even punished for.

Amy Julia (24:52)
Yeah, right.

And I do think, yeah, you’re also just speaking to a mindset that we have around disability or anything that varies from what we consider the norm. And instead of having kind of a posture of curiosity and assumption of humanity, possibility, giftedness as well as challenge, all of those things, instead it’s kind of this like, you’re in or you’re out that can come up in that. And I’m curious, I wanted to shift a little bit because I thought you did such a great job of writing

Pepper (25:21)
Great.

Yeah.

Amy Julia (25:32)
both as a mom and as a researcher, as someone who’s investigating. And there was this one experience, and this kind of goes back to that initial story you told, but you’re talking about a testing experience where Louisa was not keeping up with her peers. And you wrote this, how can I hate these tests?

and want her to do better on them at the same time. And I have totally been there. So I just want to like, a say thank you for putting that into words. But I also, I do feel like a lot of parenting is like a big exercise in comparison. I don’t want to compare my kids to other kids, but I do. And so I just wanted to ask you to speak both to the culture of comparison, but also this sense of like, I don’t even believe in these tests, and I want her to get a gold star.

Pepper (25:52)
Yeah.

Yeah.

my god.

Exactly, right? Like it’s coming from two places in my body, right? Like the hating of the tests and wanting to be able to just let them go and not have them matter to me is coming from my head and all my research. And then the part where they’re still mattering to me and I have all of these feelings and my own identity attached to her.

Amy Julia (26:20)
RIP

Pepper (26:41)
performance on these tests is ingrained in my heart, right? And also as what is expected of parenting and mothers and how that is all identified and judged in the world that we live in, right? Like you mentioned it, I think that there are many things in our society that define parenting as a process of comparison, right? Like we know we’re not supposed to do it, but…

we all do it, right? And it’s this comparison to normal that the IQ test really facilitated for parenting. One of the most amazing things about my research I found was these letters to a psychologist and a eugenicist named Henry Goddard who really develops the IQ test in

the United States and he’s getting these letters from mothers around the country that are just like, know, what should I do about my son? His IQ is this, does he belong in a classroom? Like the language and the logic of comparison that IQ tests facilitate just makes its way into parenting so…

Amy Julia (27:50)
Hmm.

Pepper (27:58)
so quickly and so profoundly in our country. So like, that’s all ingrained in me. Like just because I know and can logically understand that these tests are really doing Louisa no good. That sense of wanting the gold star is still part of me, right? Like I was also raised to want the gold star, right?

I was really good at school and I wanted to be good at school as part of my identity. And that carries over to what I think my kids should be as well. And ways that are not fair to my daughter, Louisa.

Amy Julia (28:37)
Well, and it’s complex because what you’re making me think about is a couple of things. Like one, I suspect that you in a very beautiful way would give Louisa a gold star because of who she is. Like, and all the things you know about her particularity as just a lovely, kind, generous human being. And so there’s some part of you that just wants the stupid test to reflect who she is in that way, right?

Pepper (28:52)
Of course. Yep.

Yes, and what she’s contributing to her classroom.

Amy Julia (29:02)
Right. Like I don’t want this to count her out and I know she shouldn’t be and I just and so maybe this test can affirm that. Right. So there’s that. Then then there’s the part you just talked about in terms of like there is a hierarchy of value that we do to each other as humans and I’d like her to be at the top. And I and there’s this part of me that feels pretty icky about that. And yet I’m also kind of acknowledging it.

Pepper (29:20)
Right?

Yeah.

Amy Julia (29:25)
And then I think it’s so interesting. I’ve been thinking about the way in which, you know, I am obviously, well, maybe not obvious, but I am not a person who lives with a disability. And yet I identify intimately with someone. So that’s not my identity, but I do identify very closely as a mother of a child with a disability. And I do think that there’s something there that just comes up in terms of.

Pepper (29:43)
Yes.

Amy Julia (29:50)
my identity being bound up in hers. And I’m still working through, as I think you were just speaking to as well, the idea that like it wasn’t the gold star on the test that gave me my value as a human. And that’s not the value that Penny needs to receive from some outside testing source either. And that’s actually been a really freeing realization for me. But I also feel like I’m still working it out to be like, no, no, not the gold star, actually.

Pepper (30:12)
Mm -hmm.

Yeah, right. mean, and I see this as well as a professor, right? And have students who are looking to me for a gold star, right? And that is how they think that’s what it means to learn, is to get the gold star. And I’m also dealing with my slow realization, say that my classes are not set up and I have not

Amy Julia (30:24)
Yeah. Yeah.

-huh.

Pepper (30:46)
designed my classes in a way that is very accessible to lots of different learners and thinkers, right? And I’m trying to figure that out. Like, can I be a college professor and also honor all different kinds of learners and understand that, you know, even if you don’t have your hand up all the time in class or

Amy Julia (30:52)
Mm -hmm.

Pepper (31:10)
Even if you’re not making these profound comments on the readings we do for the class doesn’t mean you’re not learning, right? And learning should matter to you. To my students, it should not matter in terms of a grade that they get. They should be able to kind of think about how this course made them a better person, how it

Amy Julia (31:25)
Yeah.

Pepper (31:34)
how it helps them understand the world better. And more and more higher education is not set up to do that very well. And I’m implicated in that.

Amy Julia (31:42)
Right.

Well, and you had this other quotation where you wrote, Down syndrome is an exit ramp off the treadmill of achievements and quantified learning on which I see my students struggling to find happiness and purpose. And I think that speaks to, it’s kind of tangentially to what you were just saying, but that sense of, okay, wait, what am I doing as a college professor? You know, what are my students doing on a treadmill of, you know, just trying to continue to prove themselves over and over and over again?

Pepper (31:55)
Yeah. Yeah.

Mm

Amy Julia (32:14)
rather than having some sense of inherent value as a human. And what would it mean for us to still be able to celebrate? Because not all kids want to learn art history. That’s okay. And we can still celebrate the ones who do and we can celebrate the ones who don’t for other reasons. so it’s not to say we all need to be the same in how we learn or what we learn, but I do think there’s a freedom that we could

Pepper (32:25)
Right? Yes.

Yeah.

No.

Amy Julia (32:38)
offer one another as humans if we were not so stuck on the treadmill of achievement and quantified learning.

Pepper (32:46)
Yeah, for sure. mean, honestly, Amy Julia, art history does not appeal to many students. At least, I guess I would say it doesn’t appeal to their parents a lot these days. I talk to a lot of students that love art history and want to major in the humanities, but their parents are making them major in accountancy or finance or something that they don’t really like, but seems to be an achievement in the way that art

Amy Julia (33:07)
Yeah.

Pepper (33:12)
art history or the humanities doesn’t seem to these days. you know, I guess, yeah, like that is one side of it, is I try to tell myself, like, thank God, Louisa doesn’t have to be part of the stress of higher education in college and the mental health problems of my students that are brought on by this culture of achievement. Thank God she has a kind of out that.

Amy Julia (33:15)
Mm -hmm.

Pepper (33:39)
of that if she wants it. But then the other side of that is like she wants it. we grew, she lives in a college town where she sees college all the time and she wants that. you know, in some ways I want that for her too. Like I think it is unjust to think that Louisa,

will never have the opportunity to say learn about the disability rights movement that you might in a college disability studies class, right? Like that is part of our country’s history that can inform her sense of self and her own identity, right? So like, want her to have those experiences, but I do not want her to have the pressure and the stress of the gold star anymore. And I think that’s…

That’s something that doesn’t really have to do with her having Down syndrome. I would think the same way if she didn’t have an intellectual disability.

Amy Julia (34:37)
Yeah, I struggle with that for Penny as well. She has started at a college program, but the assumption of the program is that she will not be taking classes for credit. But because of the different modifications she will need. So essentially, I’m going to just pause for a minute because I just learned this. So for listeners, if Penny needs accommodations, which is to say like.

Pepper (34:49)
Okay.

Yeah.

Amy Julia (35:02)
longer time to take a test or if she needs like a different sensory environment in order to, you know, conduct an assignment or something like that. That’s an accommodation. Then she can take a class for credit. But if she needs modifications, which is to say like shortening an assignment or providing, you know, supports by way of an outline or something like that, then she can audit the class, but she can’t take it for credit. And she does need modifications. But

Pepper (35:22)
Mm -hmm.

Amy Julia (35:27)
what ends up happening or at least so far in her educational experience. And I’m actually fine with that. I’m like, sure, yeah, she needs modifications. She can take audit it, that’s fine. But what I’ve found is it’s an all or nothing. Like either she can do all the work or we either don’t know how to or we don’t want to take the time to modify it because I agree with you. I think there’s so much that Penny could learn, but she’s not being given access to it. And that is really

Pepper (35:50)
Exactly.

Amy Julia (35:54)
discouraging to me because I think there lots of kids that I know with intellectual disabilities who actually don’t want to learn some of the things but Penny’s like, I want to be a communications major. I want to learn public speaking. I love writing. I love reading. Like, I want to do this. And I’m like, we’re gonna we’re gonna work on that path. Like, I don’t know. I don’t know.

Pepper (36:04)
Awesome, yep.

Right, mean, this is the thing is I’m glad to hear you say this because right, like Louisa wants to be a veterinarian. And it’s like, that is awesome, Louisa. Like, what can we do about this? Like my voice is saying things that’s like, yes, I am all in. And then in my head, I’m going, how am I gonna navigate this without like crushing her?

like how we need to be more creative here about access. And like, that’s just the thing is that I bet whether or not she has modifications or accommodations, I would imagine has very little to do with what Penny actually learns and how she grows in that class, right? It’s just, it’s for the kind of bureaucratic structure.

Amy Julia (36:53)
Right, right.

Pepper (37:00)
whether how she’s classified in that sense.

Amy Julia (37:04)
Yeah, and we are on the front edge of figuring all of that out. I wanted to ask you this because I think it’s related to what we were just talking about. You said that you want to work against a regime of intelligence that gives Louisa no space to be herself. And I know we’re kind of talking about that, but I’m curious, especially for someone in academia, to ask that question. Like, what does it look like to work against a regime of intelligence?

Pepper (37:28)
Well, it’s hard because, you know, I’m I think I’m asking a lot from our schools are already overtaxed teachers and an education system to to be able to personalize and individualize education more. You know, we have this sense of kind of like you were just saying of like.

Amy Julia (37:36)
Right, right.

Mm -hmm.

Pepper (37:51)
Well, you’re in or you’re out. Either you can be here or you can’t be here. And I think we have to be able to work in the gray area a little bit more of what inclusion looks like, for example. Inclusion in a classroom, it doesn’t have to look like your kid is sitting in a classroom 100 % of the day and…

has no aid or supports at all, right? Like inclusion can look like lots of different things, but it’s, it also, I think what is making it so hard to change this regime of intelligence into something more personalized is basically who has the power, right? And who has the power are the normal people, right? Like they don’t, they don’t see it and don’t really,

Amy Julia (38:19)
Right.

Pepper (38:44)
have to bother with seeing systems from different perspectives, right? Because the system is serving them quite well. And I think that’s one of the things I wanted to do with this book is not just speak to and give voice to ideas that are familiar to parents of people with intellectual disabilities, but try to see how the way that we think about intelligence affects everybody, right? Like my students,

Amy Julia (38:48)
Mm -hmm.

Pepper (39:12)
in college are not, as far as I know, for the most part, intellectually disabled. However, they’re still often quite miserable because of the system of intelligence that we have, right? So it’s a way in which we’re all shaped by it and we need to kind of work to a kind of system of intelligence that’s much more individualized. And I am not,

Amy Julia (39:25)
-huh, -huh.

Pepper (39:37)
like saying that it’s an easy thing to do, but it involves a certain kind of shift in logic of understanding the world that I would like to see happen and nonetheless want to argue for.

Amy Julia (39:50)
Well, and I wonder, so I’ve been thinking ever since we had an experience, we’ve gone to this camp the past four years and it was only this, literally this past summer that I noticed what it meant for it to be a space that had universal design. So I noticed for the first time that I was like, wait, there are no front entryways that involve stairs or lips, like every single front doorway to any building on this property.

Pepper (40:04)
Yeah.

Yeah.

Amy Julia (40:16)
involves a flat entry. And maybe it’s a ramp, but you don’t even notice that it’s a ramp. Like it’s not a kind of like, you know, goes zigzag 17 times or there’s a, you know, a curving ramp down to the back of the building, et cetera. And it just gave me these eyes to be like, okay, so I, as the person who does, I don’t need to think about rolling into a space ever. And yet I don’t notice that I can just walk in or I can walk upstairs. I can walk into a door.

Pepper (40:19)
Amazing.

-huh.

Yeah.

Right.

Amy Julia (40:43)
But if I’m in a wheelchair, this is like, my gosh, I can get in every door and no one has to, I just go in. And I just have been that experience and my own ignorance of it, even though I’ve been there for four years and it’s a camp for families affected by disability. So it’s kind of amazing how long it took me to see this. Anyway, I just was thinking about that with education because on the one hand, sure, the people who are in wheelchairs at that camp still need some individual support. It’s not as though

Pepper (40:47)
Right? Yep.

You

Amy Julia (41:09)
there is just because the doorways are flat, they have no experience of being in a wheelchair at camp, but it’s really different, right? And I just wonder about that, that if we had more of a sense of like universal design for education and there were still particular ways that we could offer support for the needs of these learners. And honestly, for the needs of the learners, mean, again, at camp, maybe there’s somebody who wants to go rock climbing.

Pepper (41:16)
Yeah.

Mm -hmm.

course.

Amy Julia (41:36)
and a person in a wheelchair is like, yeah, not for me. And that’s fine. We’re both welcome into the building, right? And so we can have these, the kid who’s like, my gosh, like, know, computer science and nuclear physics are all I wanna do. And it’s like, yeah, Penny has no interest in that. And that is not discriminatory that you wanna go take a class on that, you know? So I just do wonder whether there’s a sense of like universal design for education that would actually not need quite so much of that like.

Pepper (41:38)
huh. Right. Yeah.

No. Yep. Right.

Amy Julia (42:04)
individual, these problem kids who need individualized plans.

Pepper (42:07)
Yeah, exactly. I was thinking, one thing I know, I think about universal design and that philosophy is that it deprioritizes to some degree our obsession with independence, As like being able to do things by yourself is the gold standard of being an adult, right? That is what being an adult is, is being independent.

Amy Julia (42:20)
Mm -hmm.

Mmm.

Yeah, right, right.

Pepper (42:33)
maybe we don’t think about it that way. Maybe we prioritize community and collaboration and helping one another and respecting everybody’s needs, you know, rather than pushing, pushing for independence as, the goal of life, basically.

Amy Julia (42:51)
Yeah, I have taken recently to saying when people ask me if Penny will live independently, saying I never want her to live independently. I have never lived independently. This is not my goal. It’s not my goal for myself and it’s not my goal for my kid. That said, do I think she can live outside of the home with her parents? I do because I think she will be able to develop interdependent relationships with other people. And so just trying even in my own language and my own mindset to pull back from that sense of like,

Pepper (43:01)
Yeah, okay, I’m gonna take that. Yeah.

Yes, right.

Amy Julia (43:20)
We’re just going for independence.

Pepper (43:22)
Right, but like, gosh, there’s just a constant, find, especially in schools and like writing IEP goals, like a constant push to like, this is the point, right? To make Louisa as independent as possible. And like, maybe that shouldn’t be the goal.

Amy Julia (43:37)
Right, right.

Right. Well, I have one final question for you, although I could talk to you for hours. But as my final question, I wanted to just ask you in whatever way you want to take this to reflect a little bit on how your experience of raising Louisa, but also studying this topic has reshaped your understanding of the world. How has it helped you to reimagine, you know, the good life, your life, life in general?

Pepper (43:45)
Me too.

Yeah, I mean, it’s profoundly different now. I don’t know if I can say it’s because of writing the book more than just having Louisa in my life. But, you know, I used to be a high achiever, right, and somebody who really valued that about myself. And I don’t value that as much anymore, or at least I think of it

Amy Julia (44:07)
Hmm.

Yeah.

Pepper (44:28)
as a quality that maybe is on the same playing field with other qualities, right? And everybody is bringing something to the table in life and everybody’s perspective and identity needs to be valued. I will honestly say that in lots of ways, to some degree, it’s kind of isolating the new perspective that I have.

Amy Julia (44:51)
Hmm.

Pepper (44:55)
I kind of have to listen to the comments of other parents sometimes and bite my lip about like the sort of ableism and the assumptions of the people that are listening to them talk. But I guess I would say like, never thought a young child could teach me so much. mean, Louise is my own kid and…

I just, never thought that something would change my life as profoundly as being her mother.

Amy Julia (45:23)
Well, I can say amen to that. And thank you. Thank you so much for just sharing so much of your hard earned wisdom and insight, not just into Louisa and IQ test, but into who we are.

Pepper (45:25)
Amen.

Thank you, thank you, I’m very happy to be here, thank you.