Chasing the Intact Mind with Amy Lutz, Ph.D.

In a society often obsessed with intelligence, can we reimagine a good life that encompasses joy, meaning, and respect for all? What does it mean to respect and support individuals with profound intellectual disabilities? What role do those most intimately involved in providing care have in advocacy? Professor Amy Lutz, Ph.D., author of Chasing the Intact Mind, joins Amy Julia Becker to discuss:

• How the severely autistic and intellectually disabled were excluded from the debates that affect them most
• Controversy and misconceptions about sheltered workshops/14(c) programs
• The importance of meaningful relationships and community
• Building a caring and committed workforce of caregivers
• Listening to caregivers and families

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FREE RESOURCE: 10 Ways to Move Toward a Good Future (especially for families affected by disability)
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GUEST BIO

Professor Amy Lutz, Ph.D., is a historian of medicine at the University of Pennsylvania. Her research locates at the intersection of disability history and bioethics. She is a founding board member of the National Council on Severe Autism (NCSA) and the author of Chasing the Intact Mind and several other books. She lives outside Philadelphia with her husband and five children, including Jonah, her 25-year-old son with profound autism.
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CONNECT ONLINE

• Website: amysflutz.com/

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ON THE PODCAST

• Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most by Amy Lutz, Ph.D.
• The Lancet Commission on the future of care and clinical research in autism
• Section 14(c) of the Fair Labor Standards Act
• United States Commission on Civil Rights 2020
• John Swinton
• Amy Julia’s essay about the spiritual lives of people with intellectual disabilities

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TRANSCRIPT: amyjuliabecker.com/amy-lutz/
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YouTube Channel: video with closed captions

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Transcript

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

Amy Julia (5s):
What does a good life look like for people with profound intellectual disabilities, especially in a society obsessed with intelligence? This is Amy Julia Becker, and you're listening to 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 belonging. I learned so much from talking with Professor Amy Lutz historian of medicine at the University of Pennsylvania, and the author of several books, including Chasing The Intact Mind. Before I get to our conversation, Today I, also wanna remind you that I have a free resource available for just a limited time, 10 ways to move towards a good future, especially for families with disability.

Amy Julia (51s):
You can go to Amy Julia Becker dot com back slash future, or just click on the link in the show notes. In this free download, I'm sharing 10 ways that we have learned to move towards a good future. This is applicable for any family affected by disability, and honestly, really for any family seeking to raise children in some measure of health and wholeness. Now on to my conversation with Amy Lutz.

Amy Julia (01:20)
I'm here today with professor Amy Lutz

She is the author of many books, but the only one I have read although I'm gonna go back and check out some other ones The one I have read is Chasing the Intact Mind. The subtitle says a lot so I'm gonna read it here: How the Severely Autistic and Intellectually Disabled

Were Excluded from the Debates That Affect Them Most. That is a powerful subtitle and it's a great book. So Amy, welcome. Thank you for being here today.

Amy Lutz (01:46)
Well, thanks for having me.

Amy Julia (01:48)
Absolutely. I thought we could start by hearing about both your family life and your professional life, your field of study. So can you talk about, in whatever way you want to, but both of those and the ways those aspects of who you are have intersected.

Amy Lutz (02:03)
Yeah, they have intersected very significantly. I have five children. My oldest son, Jonah, who's 25 now, is profoundly autistic. He has a significant intellectual disability. His IQ was once tested at 40. He has some language. He does speech to communicate, but it's very functional. He has no abstract concepts. He also has epilepsy,

rapid cycling bipolar disorder. He has a history of really aggressive and self-injurious behavior that is now medically stabilized for the most part for which I'm profoundly grateful. And then I have four younger kids besides Jonah. And my background originally was in creative writing. So my first graduate degree was an MFA in creative writing and I thought I was gonna write the next great American novel. And...

kind of as the extent of Jonah's impairments became more salient to me and as the life we were living at home became increasingly detached from the way autism was being described in like the public sphere. So, you know, I was trying to keep my son from attacking me. I was trying to keep him from pulling out my hair. I was wondering how to, you know, keep him safe and everything, everyone else around us safe. And all I was seeing in...

in public were about autistic kids who kicked the winning field goal or sang with Katy Perry. And you started to see these shows like The Big Bang Theory and or books like The Curious Incident of the Dog in the Nighttime, you know, this kind of quirky genius model of autism, which was absolutely not what we were living at home. So I started writing more and more about issues relating to to severe, profound autism. I just wanted to kind of shine a light on what that that life looks like for so many people.

Amy Julia (03:36)
that is.

Amy Lutz (03:59)
and then, you know, I started thinking a lot about, you know, why is the autism community such a fraught and kind of conflicted space, seems so different from, from other kinds of disorder communities. And, so I decided to do, I think what any curious adult would do. And I just went back and got my PhD in the history of medicine, which I just defended in 2022. In fact, Chasing the Intact Mind is the book I wrote

for my dissertation. And I was able to kind of slide right from, I went to Penn for my, well, I went to Penn undergraduate, I went to Penn for my PhD, and then I was able to slide into an open faculty position in my department right after I defended. So now I teach at Penn in that department. But everything, all my work, my writing work, my academic work, my advocacy is all about, you know, kind of,

basically shining a light on profound autism and just making sure that our kids who are so profoundly impaired are foregrounded in kind of these conversations we need to be having about disability services.

Amy Julia (05:16)
Thank you so much for sharing all of that. And I did not realize, I do want to point out that you said, you know what anyone would do is go get a PhD. I know, but I also love that you did it.

Amy Lutz (05:23)
I know that was just kidding, but like I was super interested. Yeah. Yeah. And it was great. I learned so much and it was such a really positive experience, but I was only able to do that because I have a so much privilege in the sense that my husband, you know, I have a two parent household. My husband is extremely hands on with Jonah and he actually he's in finance, but he

Amy Julia (05:35)
Hmm.

Right.

Hmm.

Amy Lutz (05:52)
started working from home basically just a couple of years before I started working out of the home. So like the fact that he's here makes all of this possible. And we have a great team around Jonah. So even though he's 25, he still goes to a great day program. And we have a wonderful kind of team, a home team that works to support him. So all of that allows me to, you know, kind of do things that are not involved in his like direct care all the time.

Amy Julia (05:56)
Yeah.

Yeah.

Yeah.

Right, right. No, that makes sense. And I appreciate even that context. I want to make sure before we go too far that actually our listeners understand the terms that we're talking about. And so I'm wondering if you could explain autism in both general terms and also you're using the word severe or profound autism. And I think understanding is, you know, is there a distinction? What is there a spectrum? How has that perhaps changed even over the course of Jonah's lifetime? Like, could you just give us some kind of like broad strokes?

Autism 101.

Amy Lutz (06:52)
I mean, how much time do we have? Yeah, so one of the claims I make in the book, Chasing the Intact Mind is that autism might be the most unstable diagnosis in all of medicine. And I believe that's true. So autism was coined as a kind of a condition in 1943 by Leo Kenner and the idea of a kind of a broad autism spectrum that would include kind of the

Amy Julia (07:05)
Mmm.

Amy Lutz (07:20)
more classic autism and what used to be known as Asperger's emerges with Lorna Wing in the 1980s. And then, you know, autism is kind of included in different revisions of the American Psychiatric Association's Diagnostic and Statistical Manual. So when Jonah was diagnosed, I think we were at DSM -IV and that was when there was Asperger's, there was...

Amy Julia (07:40)
Mm -hmm.

Amy Lutz (07:47)
Autistic disorder, there was PDDNOS, pervasive developmental disorder, not otherwise specified, that was also considered kind of an autism -like diagnosis. You've met some of the criteria, but not all of them. And then in 2013, the DSM scrapped all of those different buckets and just offered autism spectrum disorder, ASD. That's what we have now. To be diagnosed with ASD, you need to have a significant impairment

Amy Julia (07:59)
okay.

Amy Lutz (08:15)
across two domains that's impairments in social communication. So it's not just, it can include language, like some autistic people don't talk at all, but some can talk very well as far as the fluency of their speech, but that the content of the speech might be impoverished, or their inability to read other people and participate in a reciprocal conversation. That's all concluded in social communication.

Amy Julia (08:27)
Mm -hmm.

Amy Lutz (08:44)
And then the other one is restricted and repetitive behaviors. So everyone who is diagnosed with autism is supposed to be have significant impairment across both of those key core deficits. The problem is that the diagnosis has become so broad since DSM -5 when everybody got thrown into this bucket. So now you can combine that move with also something that I absolutely...

Amy Julia (09:02)
Yeah.

Amy Lutz (09:12)
did not see coming, which was that autism has become a really trendy diagnosis that kids today are self diagnosing from TikTok videos. You have people who have graduated from Harvard Law School who are married and have kids who are diagnosed with autism. And then you have people who have to live in helmets and arm stays because if you release their arms, they're gonna hit themselves in the face hundreds of times an hour until they detach their own retinas.

Amy Julia (09:22)
Right.

and

Amy Lutz (09:42)
So it's such an incredibly broad spectrum. A lot of stakeholders have become frustrated with how broad it is. So the Lancet, the British Medical Journal brought together a commission. I think the report was released at the end of 2021. It included over 30 stakeholders from six continents, including autistic people, family members,

Amy Julia (09:46)
Yeah.

Amy Lutz (10:10)
a lot of researchers and clinicians and their task was to come up with a five -year plan for autism, just writ large. And the paper was like over 60 pages. But by far the most kind of like the lightning rod in the paper was this small sidebar that recommended introducing the term profound autism to describe people, autistic people who also had IQ less than 50, minimal speech, and who require round the clock supervision.

Amy Julia (10:30)
Hmm.

Okay.

Amy Lutz (10:40)
And the idea was that this population is at risk of being marginalized by a focus on more able people who are able to speak for themselves and whose voice is getting preferential treatment by policymakers, even though they may not necessarily qualify for any services. Somehow their perspective is being advanced and what they think services look like is being actualized. And this is to the harm of more profoundly impaired people who can't advocate for themselves.

Amy Julia (10:46)
to.

Mm.

Amy Lutz (11:10)
So I think this is a great idea. A lot of stakeholders are behind this. A lot of parents of profoundly autistic kids. Researchers and clinicians vastly support it. In fact, the CDC just last year, I think it was last year, released the first prevalence numbers about profound autism in specific using that term. And so, you know, no one's ever accused the CDC of being on the cutting edge of anything. So I think the fact the CDC is using that term says,

Amy Julia (11:27)
Mm.

Yeah.

Amy Lutz (11:38)
it's here and it's not going anywhere. And in case you're wondering, it's not just a few extreme outliers that according to the CDC, 27 % of autistic, of their cohort of autistic eight-year olds from the last time they did, this is how the CDC calculates prevalence numbers as they look at eight-year olds and say, what percentage of eight-year olds are autistic now? What percentage of eight-year olds were autistic five years ago or whatever? And in their current cohort of autistic eight-year olds,

Amy Julia (11:51)
Okay.

Amy Lutz (12:08)
27 % met the criteria for profound autism, which is incredibly scary to me because these are all kids who are gonna grow up to need, like my son, very intensive lifelong services. And I have no idea how we're gonna be able to provide for all of those people.

Amy Julia (12:20)
Right.

Okay, thank you so much. That's a great comprehensive overview and I think that gives us a few threads to pull as we have this conversation. The other kind of term I wanted to define was the one in the title of your book, The Intact Mind. There's a place, I think, let's see, where did you wrote? Well, I'm not finding it, but you basically wrote that the idea of the intact mind can be a harmful one. So I'd love to just

have you explain what the intact mind is, like as a concept, and then also why would that be a harmful thing. You've hinted at that a little bit, but I'd love to hear you say more.

Amy Lutz (13:01)
Yeah. So what I was struck by, as I said, was kind of the way autism is presented in the media versus how I was living it at home and a kind of a narrative that's very pervasive in autism. It's not as, you know, once I kind of dove into the intellectual history of this idea, it's it's definitely not attached as much to people with Down syndrome, for example. You don't find a lot of people talking about

the hidden intelligence in the kind of the normal mind inside people with Down syndrome or other types of kind of genetic syndromes, but in autism it's everywhere. There's this assumption that no matter how severe the presentation, you have someone who might be completely nonverbal, who might be in diapers as a teenager, who might seem completely unable to read or master any content, academic content.

But the assumption is that there is a normal or even genius intellect inside if you just can access it somehow. And that is all over the kind of the genre that I look at in my book, autism parent memoirs. So going back to the very first autism parent memoir, which was published in 1967 to the most recent iterations of this, this idea comes up all the time. And a lot of these books are about how the intact mind was accessed through

Amy Julia (14:13)
Yeah.

Yeah.

Amy Lutz (14:27)
ABA or through diet, you know, vitamins. One parent wrote a book about how he accessed his kid's intact mind by taking him riding with wild horses in Mongolia. I mean, it's a very pervasive idea. And the reason why I think it's harmful is because, you know, it's great, of course we want to hope for the very best for our kids to live as independent lives and as meaningful lives as possible

Amy Julia (14:55)
Yeah.

Amy Lutz (14:56)
but refusing to see significant cognitive impairment has led us to design a disability service system that reflects this intact mind assumption that all anybody, any autistic person needs is the same kind of supports anybody needs. And the idea of these...

Amy Julia (15:09)
and.

Amy Lutz (15:20)
kind of intensive disability specific settings have been targeted and closed down as being segregating and isolating. And we don't need to give autistic kids ABA or any other kind of specialized learning technique. We just need to put them in kind of inclusive classrooms with everybody else because, you know, they're in there. We just have to reach them. And if we, if you don't, it's because you as a parent don't really understand them.

And so I use a few case studies in my book of ways in which our current disability service system is on, the way we built it is predicated on this intact mind assumption. The idea that, you know, everybody with, I focus on autism because that's where I come from. But I do think it also affects people with other intellectual disabilities that

all anybody needs is to give an intellectually disabled person the proper supports and they can work competitive minimum wage jobs or live independently or kind of thrive in community -based settings. And that's just simply not true.

Amy Julia (16:20)
Yeah, and I want to follow up on a lot of those things, but I'm going to pause for a minute just in terms of the literature, like both memoirs and fiction around intellectual disability. One of the things I've noticed over the years has been that when I was looking for books that would have some measure of like representation for our daughter Penny, who is intellectually disabled and loves to read. So, you know, I was like, OK, let's find some books that have you in them in some capacity. And what I found was a lot of

you know, children like chapter books with characters with intellectual disabilities. Well, no, that's not true with autism or with cerebral palsy who were trapped inside and were eventually released. Like it was that narrative. And I was like, no, no, I want to find a child with an intellectual disability that remains intellectually disabled. Like that's who my daughter is. And she's awesome. Like I love her. She is beloved in this world. She belongs in this world. But.

Amy Lutz (17:01)
No.

Amy Julia (17:16)
I found one and I know there are others that just, you know, people have written and they have not been as, you know, received as much popularly. But I do think it, when I was reading about the memoirs that you looked at and just your ideas in general, I resonated with that thought of what you focus on and I really appreciate it and I want to talk more about is the way in which this is like harmful when it comes to policy and programming. I also think it,

indicates the ways in which we as a society don't understand how people might be valued and cared for who don't have a standard or above average IQ. So there's like a value ranking that happens even within the disability world, but certainly within our society in general. And I feel like you're really like tapping into that in what you're talking about as well. There's one place where you wrote,

There's no outcome more desired, no fight is harder fought, no loss is more keenly mourned than that of the intact mind. And just that idea of like, what would it mean for us to receive each other as full humans and persons without an intact mind?

Amy Lutz (18:18)
Yeah.

Yeah, I mean, look, I am crazy. I love my son to pieces. But I also would, if I could flip a switch and have him have an intact mind, access an intact mind, I would do it. And part of that is because it's very scary to imagine how, all we want is for our kids to be happy, right? But when we have kids who are gonna require a lifetime of care,

Amy Julia (18:32)
Mm -hmm.

Yeah.

Amy Lutz (18:55)
it's scary to imagine who's gonna provide that care when we can no longer do it. So all I want is to raise all my kids to be independent, be able to go out and do what they wanna do in the world. Now, Jonah can never do that. And even though what he wants is much more simple, perhaps than what my other kids want, it'll be a lot harder for him to access them when we can't do it for him. So I think it's, I mean, it makes, it gives me so much,

sadness to imagine him at some point when my husband and I are no longer there and his siblings, I'm sure they'll remain involved in his life, but they can't provide that kind of day-to-day care because they're going to have their own jobs and families. And thinking about Jonah and all he wants is for someone to sit down and kind of draw with him or write a fun list. That's like his favorite thing to do is to just to dictate what sounds like completely random stuff that I write down or someone who cares about him writes down or, you know, that all he wants is just like some lemonade or some

Amy Julia (19:36)
Yeah.

Amy Lutz (19:55)
a spoonful of peanut butter and nobody will understand what he's communicating and nobody will care to make sure that he has access to those things. And so, yeah, I understand why the intact mind is so important, but it doesn't affect the human value of somebody. But we can't also pretend it doesn't impact their opportunities in the world.

Amy Julia (20:10)
Mm -hmm.

Totally. And well, I'm thinking, yeah, all right, I wanna come back to that too in terms of affecting their opportunities in the world. But I wanna first just read you wrote again, There was no one moment. It was a process of many years coming to terms with the fact that loving Jonah, just like loving anyone really, means accepting him as he is rather than pretending that he's not. Can you just talk a little bit about,

for you, like what it took to be able to accept Jonah as he is, but also you write about how the academic community seemed to push back on accepting him as he is, like wanting you to fight or be different or him to be different, I think.

Amy Lutz (21:01)
Yeah, so.

Well, you know, so Jonah was hyperlexic as a boy, which is something that affects about I think I've seen about 20 % of autistic children, which means he could read and read and write before he could talk. And we just he was obsessed with letters and numbers. I mean, we thought he was one of these geniuses because when he was 15 months old, he was crawling on the pool table, putting all the pool balls in order number order.

Amy Julia (21:11)
Hmm.

Amy Lutz (21:33)
And then when he was four, before he could even talk, we just started, we noticed, we figured out he could read because he started writing in chalk on the driveway. And it was really funny because one of the first things he wrote was FBI warning, which he obviously got from all the Sesame Street videos he liked. But like, it was just funny because it was clearly, we would say, you know, we knew he didn't, we wondered what he thought that meant. He didn't know what FBI warning meant, but I think we thought he meant,

Amy Julia (21:42)
Wow.

right.

Amy Lutz (22:03)
He thought it meant something great's about to happen. You know, the video is about to start. So it was very, we really believed that the intact mind was in there because all the evidence suggested that he was going to be one of those quirky geniuses because he was so precocious that way. And still today he can, you know, read you out loud the launch sequence for the space shuttle. If you gave it to him, he could read anything out loud. But he still can't follow the...

Amy Julia (22:05)
Yeah, yeah, yeah.

Yes.

Amy Lutz (22:31)
plot of a simple board book, like the Little Engine That Could, you know, that we had from when the kids were babies, because that is the definition of hyperlexia. It's a precocious ability to decode, but that's not matched by an ability to comprehend. So you can't really understand what he's reading, not that it hasn't been really useful for him to be able to spell and type because he can search for whatever videos he wants on his iPad. And that's...

Amy Julia (22:34)
Right. Okay.

We have.

Amy Lutz (22:57)
awesome because it gives him a lot more agency in the world that he can access things like that that he wants. Also, sometimes when we don't understand his speech, we can ask him to spell something. So it's great, but it doesn't mean that he has an intact mind. And my point about academia is that disability studies is so, which is the kind of the academic arm of the disability rights movement is very focused on this kind of social model of disability, which locates disability

Amy Julia (23:10)
Mm -hmm.

Amy Lutz (23:25)
not within a person, but basically in a mismatch between a person and their environment. And this makes a lot of sense for people with physical disabilities, which are the people who started the disability rights movement in the 1960s and 70s. So obviously someone in a wheelchair is way more disabled in a town with no elevators or ramps or curb cuts than they would be in a town that had those accommodations.

Amy Julia (23:39)
Yeah.

Mm -hmm.

Amy Lutz (23:54)
But it's less clear and I would say it's not at all, I would say the social model does not apply to people with significant intellectual disabilities. And there's no accommodations that we could make, that we could give them in the world that would allow Jonah to participate in this conversation, for example. So that's what I mean about the kind of refusal to see that significant cognitive impairment is real and...

Amy Julia (24:13)
Mm -hmm.

Amy Lutz (24:22)
It doesn't make anybody less valued as a human being, but we can't pretend that all we need is to provide the right supports and everybody can go to college or work a great job or anything like that.

Amy Julia (24:32)
Right.

Yeah, the thing I wanna like explore this a little bit with you because the thing I find helpful as a parent of a child with an intellectual disability in the social model is in saying, and maybe there's a third model that I'm looking for here, but if I'm looking just at the medical model and thinking about Penny as the problem, like her body and her mind are the problem, it kind of localizes that on her.

The social model, which sometimes is very, very helpful, right? Like when she had a hole in her heart, it was really good to like localize that problem and intervene medically. The social model, it seems to me, says the problem is with our society, not with her. And the way I've thought about it, the wheelchair example is obviously the easy one in terms of understanding, but I've thought about it for her in terms of what would it take for us as a society to welcome her as she is.

And I agree with you, what would it take for Harvard University to welcome her as she is might be just a silly proposition, right? As opposed to, but for us more broadly to have a space in which as a society, she gets to be who she is and we aren't thinking that she doesn't belong here. That to me is where the social model has proved useful in asking the question. I'm with you in the sense that I'm like, yeah, I don't think like in third grade, I pulled her out of her

typical math class, because I was like, she's not understanding anything that's happening here. Why is she sitting here? And they were like, well, because you wanted her included. And I was like, well, I want her included in a meaningful way. And there were, she actually has done well in like reading and writing classes. So it's like, yeah, I want her included there. Anyway, point just being that I'm wondering whether you think there's any

any way in which the social model of disability is helpful for someone like Jonah, or if you think that it is really just kind of a category error.

Amy Lutz (26:34)
I mean, for me, the medical model really explains, you know, Jonah's impairments from his intellectual disability, his seizures, you know, everything, you know, and I hope in the future that we will be able to intervene so that other kids are not born with that level of, you know, neurological deficit because he's had a very tough life. It's been a very, it's been like, you know, it's

Amy Julia (26:42)
Here's your life.

Mm -hmm. Yeah.

Amy Lutz (27:02)
been very difficult on our family. And like I said, we have enormous amounts of privilege compared to what other families are living with in terms of the lack of supports that they are just kind of doing this on their own. I mean, in general, I think that the social and medical models both need to be, in virtually all cases, probably explain part of anybody's situation. It's just that,

Amy Julia (27:26)
Yeah.

Amy Lutz (27:31)
you know, disability studies has kind of come out like, it's the social model, it's all the social model. And if you come out and say, well, actually, no, then you run the risk of being attacked as being like ableist. You know, so, you know, kind of that's.

Amy Julia (27:35)
Right.

Totally.

Yeah, no, and I agree. I feel like both of them have been helpful to me and I've appreciated even, I interviewed someone here who has a physical disability and uses a wheelchair and she said, you know, the medical model is helpful for me when I'm in pain. Like, that's not, like even for someone where again, a lot of the built environment is what is provoking a sense of being disabled in the world, she's like, and there are things that in my body I need

medical assistance with, and there are impairments. And let's just be willing to talk about that and be clear on it. So I know I appreciate that. And I think this maybe can help us segue into some of the specific programs and policies that you write about in the book. One of them is about what have been called sheltered workplaces or sheltered workshops. And these are jobs that, again, I've heard about kind of over the years in very,

not even just dismissive, but like horrific terms, right? Like people are paid sub minimum wage and they are just used for their labor and they're like sweatshops and just really, really negative terms. And so I was so fascinated that you were essentially going to be like presenting a defense of these types of situations. And you go on, you do a deep dive with a lot of interviews and a lot of really...

Amy Lutz (29:01)
Yeah?

Amy Julia (29:15)
personal, like here's what it actually looks like in practice. And you, so you very much convinced me not only to take a deeper look, but to say, I mean, you convinced me there is a, not just a place for these programs within our society, but a really important one. And so I'm wondering if you could bring listeners who don't have any background into like, what is controversial here? What are these programs? Who are they for? And also like make a defense, like why do you support them?

Amy Lutz (29:43)
Yeah, and let me start by saying Jonah is not in a 14(c sub minimum wage program. He requires too much supervision for those for that type of program. So I don't have any skin in the game directly. But one of the reasons why I wanted to focus on 14(c and I use that term because the

the people I spoke to, the 14(c advocates, they really don't like the term sheltered workshop because it has the connotations you mentioned as being something old, something exploitative to them. They prefer not to use that term. They just call it 14(c or something. They have other terms they use, but I just call it 14(c, which is the regulatory name of the program that pays for that. And so, well, you know,

The reason why I wanted to write about it is because the discourse around 14(c is amongst the most deranged of all the disability controversies. And what I mean by deranged is that the mismatch between the rhetoric from kind of disability rights advocates and the reality on the ground is just, it couldn't be farther apart. And of course the public has really worked up about the rhetoric. But let me just backtrack a little bit just since you asked me to.

Amy Julia (30:52)
Right.

Amy Lutz (31:03)
to explain what those are. So 14(c) was a regulation introduced by the Department of Labor in 1938, and it allows the payment of a subminimum wage to people with certain disabilities that's basically predicated on their productivity. And it started with blind people trying to rehabilitate blind people for the kind of the workforce.

But today the population is overwhelmingly people with intellectual disabilities and some people with kind of chronic psychiatric disabilities also. But mostly people with intellectual disabilities. And the program is very regulated. It's not like you or I could open a store and say, I am going to staff the store with a bunch of people with Down syndrome and I'm gonna pay them 10 cents an hour and I'm gonna get rich off the backs of their sweat.

Amy Julia (31:49)
Right.

Amy Lutz (31:56)
You know, it's actually virtually all of the 14(c certificates are held by vocational rehab nonprofits. You know, this is just part of the service menu that's offered for people with disabilities. And typically these programs are run at a loss because they're expensive to run to provide the supervision and the training that's part of it. The wages are very regulated. So, you know, basically.

They time a disabled person doing a task and then they compare that to what the average time of three non -disabled people doing that task. And then they calculate the wages based on the prevailing wage for that task in that area. And they have to repeat this. I forget if it's every six months or every year, so that a lot of the families I spoke with, their disabled adult kids were making minimum wage or higher because the more skilled they got, the higher their wages were.

But the real, and so I will say that disability rights advocates have been opposed to these workshops, these 14(c) programs since the beginning, and they paint a picture of these programs being, as you described, like very financially exploitative and kind of institutional. And what I will say is that, for one, it is simply not financially exploitative because,

Nobody is expected to live off the wages that they make in a 14(c) program. So for, I mean, I can't make a statement that this is true in every case, but in every case I've kind of encountered or learned about the 14(c) wages represent like a tiny fraction of the benefits package that adults with disabilities get from the state. So I know it's...

Amy Julia (33:28)
Mm -hmm.

Yeah.

Amy Lutz (33:51)
Those packages can go well into the six figures when you put in residential care, which a lot of them have if they don't live at home, transportation, the cost of the day of the 14(c) program, other types of occupational therapy, speech therapy, behavior support, whatever, you know, all that food, all that gets rolled in.

Amy Julia (33:56)
here.

Amy Lutz (34:09)
So it seems ridiculous to me to say that because somebody makes $3 an hour, they're being exploited when then they just get all of the everything else is paid for as part of their waivers from the state. And I just can't, I don't understand why this idea doesn't go away. I mean, you can make some claims about 14(c) programs, but you can't make the case that they exploit people because, you know, like I said, nobody is living off of those wages. But the other thing that,

that disability rights advocates don't like about 14(c) is that they say it's segregated. They don't like any disability specific settings, whether it's in a farmstead for people with disabilities, like a residential setting or even like a school. My son went to a private school for kids with autism after he broke a teacher's nose in first grade, after he was in kindergarten. So they offered out of...

Amy Julia (34:47)
Thank you.

here.

Amy Lutz (35:06)
They offered us placement in a private school. And so, but disability rights advocates don't like any disability specific settings. And I just find this to be the most offensive language coming out of people who are supposedly disabled or support people with disabilities, which is, "The best thing in the world we can do for anybody with a disability is surround them with people who are non-disabled." In other words,

Amy Julia (35:08)
Mm -hmm.

Hmm.

Amy Lutz (35:33)
You and I and our friends can get together, that's community. But if Jonah or Penny and their intellectually disabled friends get together, that's no good. That's institutional, that's segregated. Yuck. You know, it just so belittles, you know, the idea that intellectually disabled people, just like most non -disabled people, really enjoy communities of their peers. And then it doesn't have to be forced on them. You know, I completely believe...

Amy Julia (35:48)
Mmm.

Yeah.

Amy Lutz (36:01)
that nobody should be forced to work in a 14(c) program or live on a farmstead with other disabled people if they want their own apartment and they're capable of working in the community. I completely support providing whatever assistance is necessary to achieve that goal. But for Jonah, disability, I would really love to see him on some kind of disability specific farm, big farmstead with a lot of disabled people, a lot of support people at different levels.

Amy Julia (36:04)
Right.

Yeah.

Amy Lutz (36:29)
where there could be a lot of services provided on site. I think he would really enjoy that. Now we are not allowed to build anything like that in Pennsylvania because, you know, disability rights advocates have really succeeded in pushing, you know, for only for the states to only fund services that they consider in the community. And different states have taken different approaches to that. Pennsylvania, where I live, is amongst the most restrictive.

Amy Julia (36:41)
Yeah.

Hmm.

Amy Lutz (36:56)
Anyway, so like the whole attack about 14(c) is based on those two things that it's financially exploitative and it's isolated. And one of my favorite quotes in the book was when the mom of one of, so I spoke to one young woman who works in a 14(c) program and she was able to really articulate how much she liked it. And I spoke to her mom and she was like,

No, my daughter does not want to be the one disabled greeter at Walmart surrounded by a bunch of other non -disabled employees. What is so hard to understand about that she likes working with her friends? And it was very telling to me. My favorite statistic from the whole book was when the United States Commission on Civil Rights,

Amy Julia (37:29)
Right.

Amy Lutz (37:44)
considered whether 14(c) should be preserved or eliminated in 2020. This commission takes on different issues all the time. And as part of their process, they solicit public comment. So they noted in the report that they got more public comments about this issue than any that they had ever, than for any other issue. And that 97 %...

were in favor of preserving 14(c). They heard from so many families who were like, this is my loved one loves going to their program. They don't even, some of them would say they don't understand money. They don't care. You know, it's just about a structured activity during the day that they like. They like, you know, they like going there. And even though 97 % said that they, you know, asked to be preserved, the UCCR, this commission,

Amy Julia (38:14)
Yeah.

Right, right.

Amy Lutz (38:37)
recommended it to be eliminated just because they privileged the perspective of very mildly disabled, you know, disability advocates who would never be recommended for a program like that. So I don't, you know, I just don't understand, you know, why they can't say, you know, if you don't like that, that's fine. You don't have to work there.

Amy Julia (38:46)
Right.

Amy Lutz (39:05)
But let's keep this going for those who are really enjoying that. And furthermore, what they found is that in states that do get rid of their 14(c) programs, there is no significant migration into competitive employment because, as should be kind of self -evident, the reason why a lot of intellectually disabled people are working in 14(c) programs is because they can't really succeed at competitive employment.

So what happens when you close these programs is a lot of adults end up stuck at home.

Amy Julia (39:36)
Right, right. No, and I do think you do a great job of again, just kind of portraying, giving all of the information you just did, but also some real, you know, site visits. And also one of the things I was struck by in your descriptions was, well, sure, so -and -so is employed in this workshop, but they also can choose to work for two hours. And then there are other activities that are available to them. So it's not like going to work where you are punching in at nine o 'clock and leaving at five, because there are many,

Amy Lutz (39:58)
Yeah.

Amy Julia (40:06)
adults who are in this position of, yeah, I wanted to do some work and I also want to go do whatever else with my friends. And there is a sense of, as you said, like agency that is being denied if these are taken away. And I think the nonprofit aspect of and the kind of care and support aspect of all we're talking about is kind of terribly ironic in terms of the protest against it. And I'm really I appreciate your words about just the

complexity of thinking about what, again, in some rhetoric would be called a segregated setting, and in other rhetoric might be called a setting among your peers. And I think that, again, goes back to even within the world of disability, but certainly within our society more broadly, that we have a sense of a hierarchy of worth. And on the one hand, I think the intention is to say,

Amy Lutz (40:43)
Yeah.

Amy Julia (41:04)
All disabled people have just as much value as everybody else. But the way that that would happen according to this rhetoric is by eliminating any spaces that are just for people with disabilities, making sure that everybody, you write, The goal of transforming the disabled into active taxpaying members of the community perpetuates a surprisingly neoliberal hierarchy of value. And I was so struck by that sentiment of just like, wait, what are we trying to?

force people into here, it's an ideology that like, you're valuable if you can go to work in the morning and work from nine to five, making, and as you said, making minimum wage is not as though, like it's not as though that's not economically exploitative of adults. Like there's so many problems with so many of the concepts and yet, and yet as someone who even in the disability world did not know any of these details as far as how the,

Amy Lutz (41:45)
I'm going to go.

Amy Julia (42:01)
I don't know, what word do I use if I'm not using workshop?

Amy Lutz (42:05)
I use 14(c).

Amy Julia (42:07)
14(c), the way these 14(c) programs work. Anyway, I'm so grateful to be informed. And I do think, yes, there's a real policy and advocacy piece to this that matters. But I also think it just brings up a lot of the way we as a society understand our humanity and our shared humanity and what it means for us to receive one another when we have experienced impairment or illness or disability or

not like and say we all we all matter and we all belong and how are we going to do that together. So maybe this is maybe a place where we can start kind of coming to a close. I as you know this podcast is called Reimagining the Good Life and I wanted to talk with you because you definitely pushed my imagination in kind of okay what does it mean for Jonah

within the limitations of his body and brain to experience as much goodness, right, in this life as he can. What does it mean for Penny to do that? And you write about like how an abstract commitment to inclusion has been weaponized. And I think we've just kind of talked about that. And then this is very, towards the very end of the book, you say, Respecting the personhood of the severely autistic and intellectually disabled,

maximizing their opportunities and ensuring their lives are filled with joy and meaning requires honest conversations about the impaired mind, not pretending it away. And so I wondered if you could imagine or envision with us, like, what would those honest conversations lead to? Like, what is a way forward that would include respect, opportunity, meaning and joy—like those are the words you used—for the severely autistic and intellectually disabled?

Amy Lutz (43:59)
Yeah, that's a great question. It's funny, My ideas about the good life have really changed a lot over this quarter of a century parenting someone with significant intellectual disabilities. I'll confess, my husband and I were big kind of academic snobs before all this. this. this. We both went to Ivy League schools and that's all we really wanted for our kids, just like I remember before

Amy Julia (44:18)
Me too.

Amy Lutz (44:28)
maybe when Jonah was a baby or before, or even before he was born, my husband would say, I don't care if they're cute. I don't care if they're good at sports. I just want them to be smart. That's all he wanted. And it was a big, I write about this in one of my previous books, which is it was a big moment when Jonah was like, I don't know, two or so in his kind of the fact that he was autistic was just becoming evident. And my husband turned to me, we were just in the car. We were not talking about this, but he was like,

Amy Julia (44:37)
Yeah.

Hmm.

Amy Lutz (44:55)
it would be OK if Jonah had special needs, you know, because suddenly it was not just hypothetical or anything. It was just like Jonah, who we loved so much and we loved him no matter what. And I just was so like, just love my husband so much in that moment for him to kind of like get past that. So I no longer think that intellectual achievement is necessary for the good life. To me, it's kind of now obvious that it's different for everybody.

One of the things that's most important to me is that Jonah is always surrounded by people with whom he has meaningful relationships and whatever that looks like for him. So, you know, one of the essays in my last book was about, you know, what does friendship even mean for Jonah? Because I had said Jonah is not really capable of friendship in the way that I understand it. It's kind of a reciprocal relationship between two people. For Jonah, the people he cares about the most besides family

Amy Julia (45:32)
Yeah.

Amy Lutz (45:49)
a paid friend is kind of like a jumbo shrimp. It's like an oxymoron. But now I've come to believe That's what's a meaningful relationship to him, and I don't want to undermine that or minimize that at all. So his good life is going to be one where he's really surrounded by people

Amy Julia (46:14)
Mm -hmm.

Amy Lutz (46:20)
who care about him, but who are more broadly who are kind of drawn to this profession of caring for people with really complex needs because they have a lot of love to give and they really care about it. And that's why I'm very concerned about kind of the direct care crisis that now we have people who are hired to work with very vulnerable people who are only doing it because they didn't get that higher paid job at the Amazon warehouse.

you know, like not because they, this is something they want to dedicate their lives to doing. So I do think that focusing on building a really committed, caring workforce is hugely important. Kind of the easy thing to do though is just to embrace kind of like broad choice in all kinds of service provision. Like why are the states or the federal government kind of getting involved in dictating what...

Amy Julia (46:53)
Hmm.

Amy Lutz (47:16)
individual services need to look like for individual people. I mean, I thought that the whole mantra of disability service provision was supposed to be the ISP, the individualized service plan. It turns out it's only individualized if you want to choose the one option that we're going to give you. You know, we waste so many resources in just legislating. You can only do this, you know, can have only this number of people in this house or this percentage of people.

Amy Julia (47:25)
Right.

Yeah.

Amy Lutz (47:42)
who are disabled in this building, like just stop with all of the obstacles and let disabled people and their families and their providers and architects and contractors and whatever builds the types of service models that they want to live that life that they want to live. And of course we need oversight because of course this is a vulnerable population, but I think choice is hugely important. And finally, I would say we need to listen to the parents of profoundly

Amy Julia (47:58)
Right.

Amy Lutz (48:12)
autistic and other intellectually disabled people about what's best for them when they can't articulate themselves and not very mildly affected autistic people who graduated from Harvard because although they claim to speak for the entire spectrum, they don't. And I know that we're in kind of a moment where we want to privilege disabled people talking about the disability experience, but for if we only listen to those people, then our kids...

Penny and Jonah are going to be completely shut out of the conversation because, well, I don't know Penny, but I will say Jonah can't speak for himself. And so if he can't speak for himself and if I'm not allowed to speak for him, then his perspective is not going to be shared. So whenever we have conversations about disability service provision that's focused on those with the most kind of intense and complicated care needs, we have to privilege the perspectives of the parents over the disability advocates.

Amy Julia (49:10)
That's such an important point. And I really appreciate your articulating that here. I had a conversation with a disability theologian who's named John Swinton. He actually does a lot of work in the dementia care as well. And I was asking him how, I was trying to write an essay about the spiritual lives of people with intellectual disabilities. And I realized I could only talk with people who were kind of

on the high IQ side of intellectually disabled in order to get from them their experiences. But I could talk with family members for other people with more profound intellectual disabilities and say, like, is there, as far as you can tell, is there a spiritual life here? And we had great conversations, but I thought, am I allowed to say that, well, his dad says this about him, but...

Amy Lutz (49:58)
Yeah.

Amy Julia (49:59)
You know, what John Swinton said is, yeah, like, again, if we are only going to see ourselves as isolated individuals, and that's the only way that we can like we only see ourselves as a self and not as a self in relationship and in community, then sure, like you either speak for yourself or there's nothing. But if we have a model of humanity that actually connects us to the people who love us, then it's not we have to be, of course, careful and respectful about speaking on behalf of someone else. And yet

Amy Lutz (50:14)
Yeah.

Amy Julia (50:26)
who better than Jonah's mom to speak for him, right? So I really, I think that's quite beautiful and important. And potentially for all of us, you know, at some point we may find ourselves in a position where we probably will, where we cannot speak for ourselves when it comes to a medical need or even just to a human need, you know, again, as we age or have an accident or whatever the case may be. And that sense of relying on a community of care and love

Amy Lutz (50:28)
Yeah.

No.

Amy Julia (50:55)
rather than on an advocate who has abstractly spoken about your experience outside of it who doesn't know you. That seems, that makes a lot of sense to me.

Amy Lutz (51:03)
Yeah. I feel like, you know, that's one of the reasons why I love bioethics. That's kind of another passion of mine. I'm a historian of medicine, but I do a lot of work in bioethics and I teach and teach bioethics and write in bioethics. And, you know, bioethics has a very robust literature about surrogate decision -making. Who should make decisions for people who can't decide for themselves, whether it because of dementia or because of, you know, intellectual impairment or traumatic brain injury. And I have to tell you,

Amy Julia (51:26)
Yeah.

Amy Lutz (51:30)
I have yet to come across a bioethicist who says the person who should decide for the incapacitated person is a complete stranger who happens to share a very different presentation of that person's diagnosis. That person definitely knows what's best. Of course not. They say in all cases, whenever possible, assuming there's no, you know, like, you know, there's no, obviously there are bad parents.

Amy Julia (51:56)
Right, exactly. Right. No Yeah.

Amy Lutz (51:57)
and selfish family members and stuff, but in general, the family members know and care about the patients the best, and they are the ones who should be making the decisions when necessary. It's pretty broad consensus. And so I think it's a really helpful literature to bring to this conversation. Yeah.

Amy Julia (52:15)
Yeah, yeah. Well, we could keep going. I'm not going to do that, but I am going to just mention that in your book you do also talk, and I think this is kind of hinting in that direction, about guardianship and supported decision making, which is another realm where these different ideas might play out. But what I appreciate again is just that

combination you have of both the investigative work that you did, the scholarly work that you did, and the mother's heart that you bring into all of it. It was certainly helpful and expanded my own thinking on these things, and I'm sure that's true for people who are listening today. So thank you for being here.

Amy Lutz (52:54)
Well, thanks for inviting me here to discuss these things. I've always loved connecting with other parents and, you know, kind of just talking about these issues. They affect all of us.

Amy Julia (53m 10s):
Thanks as always for listening to this episode of re-Imagining The Good Life. Please take a second, just a second to rate or review it, share it with others, and don't forget to get the free resource, 10 ways to Move toward a good Future. I love hearing from you. So please do click the link in the show notes. You can text me your comments and suggestions about our next upcoming season. I also want to say thank you to Jake Hanson for editing the podcast for, to Amber Beery, my social media coordinator and podcast producer. She does everything to make sure that this all happens and happens well. And finally, thank you for being here.

Amy Julia (53m 50s):
I hope this conversation helps you to challenge assumptions, proclaim belovedness and envision belonging. Let's reimagine the good life together.