Transcript

Episode 7: Genetic Difference, Disability, and Inclusion

KEY TOPICS

  • Introduction to genetic difference & disability, Dr. Arielle Silverman, Director of Research for the American Foundation for the Blind [00:00 - 4:15]

  • Excerpt from Arielle Silverman’s book, Just Human: The Quest for Disability Wisdom, Respect, and Inclusion [4:15 - 8:33]

  • Can you talk about your research on disability simulation exercises and emotional perspective taking? [8:34 - 13:30]

  • Do you think true empathy building exercises are even possible for better understanding the experiences of people living with disability and difference? [13:30 - 15:07]

  • What are the five stages of inclusion related to people with disabilities or difference that you write about in your book? [15:07 - 20:24]

  • How do you think we can shift people's mindset around inclusion? [20:24 - 22:24]

  • What do you wish people and clinicians understood better about your lived experience as a blind woman, advocate, and researcher? [22:24 - 25:14]

  • Given that genetic screening and testing has become a standard of care in prenatal medicine, how do you think genetic counselors should approach prospective parents when talking about the wide variety of genetic differences and disabilities? [25:15 - 29:55]

  • Could you describe the differences between how a blind person and a sighted person does complex math? [29:56 - 35:15]

  • Do you consider being blind a form of neurodivergence since your brain is doing the same things, but just going about it differently? [35:16 - 36:43]

  • Can you talk a little bit about that work and your views about how we can better support kids with disabilities? [36:44 - 39:37]

  • Wrap up [39:37- 41:08]

 

Interview

[00:00 - 4:15]

Susanna Smith: Hi everyone. This is Genetic Frontiers. A podcast about the promise, power and perils of genetic information find us wherever podcasts are found and go to geneticfrontiers.org to join the conversation about how genetic discoveries are propelling new personalized medical treatments, but also posing ethical dilemmas and emotional quandaries. I'm your host, Susanna Smith.

On today’s episode, I will be talking with Dr. Arielle Silverman, who is the Director of Research for the American Foundation for the Blind, where she conducts quantitative and qualitative research related to blindness and visual impairment. Arielle has been blind since birth. She was born with a condition called leber congenital amaurosis  or LCA. LCA is usually a recessive condition, meaning a person inherits a genetic mutation for LCA from both parents. Mutations in more than twenty genes have been implicated in LCA. Although the condition is rare—occurring in 2-3 babies per 100,000—it is also the most common form of inherited blindness in kids. 

As a disability rights advocate, researcher, and writer, Arielle  has published numerous peer-reviewed articles. She is also the author of a book called Just Human: The Quest for Disability Wisdom, Respect, and Inclusion.

In  Just Human, Arielle proposes three principles of “disability wisdom” to guide engaging with people living with disabilities. These are: 

“1. Acknowledge the full humanity of disabled people; 

2. Treat the disabled person as an ordinary other; and 

3. Treat the person as an expert on their own needs.” 2

She writes, “in almost all ways we can treat the disabled person in an identical manner to how we treat any other person. In the few times when the disabled person requires accommodation, we must allow said person to tell us how they wish to be accommodated.”

Though we often refer to blindness as a disability, another way to think about congenital blindness is as a naturally occurring, expected genetic variation or difference. When Charles Darwin proposed his theory of evolution in the 1850s, he argued that species adapt to their environment through change—biological variance within a species can become an advantage, disadvantage, or perhaps neutral adaptation. Darwin didn’t fully understand that species achieve variance through genetic mutation. Those tiny changes in DNA over generations are the propulsive force of evolutionary change. 

Siddhartha Mukherjee writes in his book, The Gene: An Intimate History, that:

 “In a formal sense, a mutation is defined only by its deviation from the norm… A tall man parachuted into a nation of dwarfs is a mutant, as is a blond child born in a country of brunettes … By itself, then, a mutant, or a mutation, can provide no real information about a disease or disorder. 


Mukherjee continues by saying:

The definition of disease rests, rather, on the specific disabilities caused by an incongruity between an individual’s genetic endowment and his or her current environment—between a mutation, the circumstances of a person’s existence, and his or her goals for survival or success. It is not mutation that ultimately causes disease, but mismatch.”


That we often refer to blindness as disability is a reflection of this mismatch and the reality that the built environment we live in is largely designed by and for people with sight. Being sighted is assumed to be an advantage. But we could also imagine an alternate reality—a world of low light or long periods of darkness caused perhaps by a catastrophic event—in which having learned to live fully with little or no vision could be an advantage. 

In the world we live in today, where genomic sequencing is increasingly fast, cheap, and available, allowing us to know more about our genetic differences, I’m interested in how we think about, talk about, and build a world that celebrates and accommodates the spectrum of difference and disability. 

Thank you for joining me on Genetic Frontiers today, Arielle, to talk about some of this. 

Arielle Silverman: Thank you for having me.


[4:15 - 8:33]

Susanna Smith: I'd like to start, Arielle, by having you read a short excerpt from Chapter One of your book, Just Human: The Quest for Disability Wisdom, Respect, and Inclusion.

Arielle Silverman:  [Reading book excerpt, Just Human, p. 12-14.]

“The word ‘blind’ has never bothered me, any more than the word “blonde.” Both describe a visible characteristic of a person. Blind people can’t see, and blonde people have light-colored hair. I never put much of a value judgment on either one. For me, blindness has always felt as natural as breathing.

I don’t long for sight any more than somebody might long for the ability to fly, an invisibility cloak, X-ray vision, or the ability to read minds. All are things we might idly dream about during life’s pauses before we get back to its regularly scheduled programming. For me, sight is as exciting and mystical as any of these other superpowers, but having never had it before, it is something relegated to my imagination. In the meantime, I have found that most activities the average person does visually, I can perform quite ably using my other senses. Sometimes this requires the help of assistive devices, or collaboration with others. And the few things in which I cannot participate, I never cared much for anyway. Yet, I learned from a young age that blindness bothers many other people. I have heard of blindness described as a tragedy, a curse, a devastation, or a prison sentence. In population surveys, blindness is rated as one of the most feared “diseases” surpassed only by cancer and AIDS. Much of my life has been spent on trying to understand how a condition that feels so normal and inconsequential to me would be so upsetting to outside observers. I hear a related story from many parents. They describe being shocked, surprised, sad, even devastated by the news that their young son or daughter was born with a disability. They describe experiences of grief. Emotional reactions like denial, depression, and anger are described, akin to the emotions that often accompany death of a loved one. In the best cases, parents say their grief gives way to acceptance, but sometimes it takes years, even decades. Certainly, there are negative aspects to having a disabled child. Some disabilities cause pain, or threaten a child’s life expectancy. Some disabled children struggle to communicate their basic needs. Some parents may endeavor to secure needed educational services for their children, or suffer under the weight of medical bills. Other parents may fight to have their disabled children accepted into daycare centers, schools, summer camps, or peer groups. So, it makes sense some parents may feel sad or worried when presented with any or all of these challenges. But, why do they feel surprised? The Centers for Disease Control and Prevention estimate that about three percent of babies in the United States are born with a “birth defect.”1 These conditions can cause long-lasting medical needs or disabilities. However, many more children are born with disabilities not detectable at birth. Disabilities like autism, learning disabilities, and some forms of blindness, deafness, or physical impairment may not manifest until later in childhood. And, of course, new disability can develop at any point in life, whether from a later-onset genetic condition, accident, or illness. In the 2018–2019 school year, fourteen percent of public school students in the United States received special education services.2 And among the U.S. adult population, including adults older than the age of sixty-five, up to one in four American adults have a disability.3 The percentage of Americans with disabilities overall is about twenty percent, or one in five. So, every time a baby is born in the United States, there’s about a one in five chance they will develop a disability at some point in life. In many other countries, that number is higher. When we look at the statistics, the birth of a disabled child should not be a surprise. It needn’t be unexpected. And it’s not a loss of anything. It’s simply a different way of being, that’s not in the majority, but is far from rare.”


Susanna Smith: Thank you for sharing that excerpt, Arielle.

[8:34 - 13:30]

Susanna Smith: So one of the parts of your book that I found fascinating was the research you did on emotional perspective taking, which is in essence the ability of a person without a disability to place themselves in the shoes of a person living with a particular disability. Can you talk a bit about what that research was, what you found and your views of disability, simulation exercises?

Arielle Silverman: So when I was growing up, I was sometimes asked to help young people learn about disabilities. And I learned that a lot of teachers enjoyed doing these disability simulation activities where they would have people put on a blindfold or wear earplugs or ride around in a wheelchair, or something like that, or even try to simulate a learning disability for a few minutes. Those exercises were intended to build empathy and foster inclusion.

I found it interesting that a lot of non-disabled educators and professionals thought those simulations were wonderful. And yet basically, all the disabled people that I interacted with thought. They were terrible representations of their lives. And so that tension between non-disabled professionals and disabled people was fascinating to me, and when I was in graduate school I took a class with a professor named Dr. Leaf Van Boven. He had done a lot of work around, understanding emotional perspective taking so understanding how people interpret the emotions of others, or how people imagine the way someone else must be feeling. Much of his research found that when people imagine how somebody else feels, they start by thinking about how they themselves would feel in the same situation and then they make an adjustment so they might recognize that they are a little bit different from the other person and kind of adjust from the way that they thought they would feel. I realized that a lot of times when people without disabilities try to imagine what it's like to have a disability. They start by imagining. Well, what would it be like for me if I suddenly lost my sight or my hearing, or whatever, and then they project that onto the people who actually have disabilities. A simulation, of course, is like a very strong manipulation where somebody actually literally does pretend that they have a disability for a little while.

So in our research, we looked at what happens when people are blindfolded for a short period of time and how that affects their beliefs about what it would be like to be blind, but also their beliefs about what other blind people are capable of doing. And so we did these experiments. There were different conditions but the primary experimental condition was the blindfold condition where people were blindfolded. We had them do activities like walking around unfamiliar area, writing on a chalkboard, pouring water, finding coins that have been dropped, activities that blind people do every day without issue but that people who had just become blind would find very challenging. 

Then the individuals filled out questionnaires where we asked them what they thought it would be like to be blind. We asked them how capable they thought blind people were of doing certain activities relative to sighted people, and in a later experiment we asked them to actually graph out what it would be like if they became blind, and how quickly they would adapt and rebuild their capabilities.

We found consistently that, compared with control conditions, the students who were blindfolded thought that being blind would be a worse condition. They thought that it would be harder to recover from sight loss. They thought that blind people experience more emotional distress. Most concerning of all is that they thought that blind people were less capable of performing activities like employment and independent living.

And that is significant because non-disabled people are often in positions of power, making decisions about whether to, say, hire a disabled person, or whether to have a disabled person babysit their children, or even whether to allow a blind parent to remain a caregiver for their own children. And so these exercises that are meant to help can actually backfire and lead people to believe that blind people are less capable.

We also found that when they imagine what it would be like for them to go blind, the people who had done the simulation thought that it would be harder for them to recover. And so this supports the theory that people project their predictions of what blindness would be like for them onto their judgments of other blind people. And they think, “Wow! When I was blindfolded for a half hour, it was so hard for me to pour a glass of water like, how could a blind person possibly live independently?” So the research suggests that if these activities are going to be done they need to be done very carefully.

There needs to be a balanced experience of both the losses of disability and some of the compensatory strategies that disabled people use. There also needs to be a greater focus on the environment and how we can build the environment so that people with disabilities are as capable as their peers without.

Susanna Smith: These are all great points, Arielle.

[13:30 - 15:07]

Susanna Smith: So do you think true empathy building exercises are even possible for better understanding the experiences of people living with disability and difference?

Arielle Silverman: First of all, if somebody has a congenital disability almost by definition a person who was not born with that condition cannot fully appreciate the experience. So if someone grows up with sight there is literally no way to understand what it is like to have never had sight because doing so would require basically a brain transplant. It would require you to forget everything you ever knew or remembered about vision because that's what it's like to be born blind. You have no memory of sight.

So there really is no way to experience what it's like to have a congenital disability. And then with acquired disabilities, you can maybe get close a little bit by doing these simulations. Certainly a lot of complex, you know, neurodiversity kinds of conditions like autism or dyslexia are really impossible to simulate, because they're complex. They affect many different dimensions of experience. So I think we need to shift away from empathy, being knowing what it's like, and we need to shift toward an inclusion mindset. Understanding these people have a different experience from me, and that's okay. I can accept that.

Now, how do I build a world so that these people have equal opportunity? It starts with talking to and really listening to the experiences of people who have a different body or mind from yourself, and appreciating that even if you don't physically or emotionally understand their experience, their experience is valid. The accommodations they're asking for, advocating for are valid, and will help build a more inclusive workplace or a more inclusive world.


[15:07 - 20:24]

Susanna Smith: Yeah. And in your book you write about the five stages of inclusion related to people with disabilities or difference. Can you talk a little bit about what that progression is?

Arielle Silverman: So just a quick and dirty explanation. And this is just a model that I came up with. It's certainly not perfect. It hasn't been empirically tested or anything like that. So I'll make that disclaimer. But a surprising number of people seem to relate to it. So I'll go ahead and go through it.

Certainly not everyone starts at stage one so stage one is what I called active exclusion. And this is the stage where people have gut reactions to disability that are not positive. People may experience disgust, fear, even maybe envy of people with disabilities. A lot of that comes from our evolutionary wiring. We as a species are wired to reject individuals who might carry disease or individuals who cannot contribute to maintaining a hunter-gatherer society and things like that. So we are kind of hardwired to avoid or turn away from someone who looks, sounds, or acts different. People in stage one may commit hate crimes against disabled people. They may reject disabled people from their groups or organizations. They may even bully disabled people because they're acting on those feelings. Certainly most of us are not in stage one

Stage two is kind of like the neutral stage so in stage two, you don't really care about disability one way or the other. And so you don't try to exclude people with disabilities. But you also don't really make an effort to be inclusive. So if someone can't perform a particular job you might just go ahead and hire a person without disability because they can do it faster.

Stage three is a little bit of a complicated stage. I've called it the helping stage, and many people start out in stage three. Family members of disabled people often get stuck in stage three. Stage three is a stage where you feel warmth and empathy and caring concern to our people with disabilities. You want to be inclusive. You want to help. But you still see people with disabilities as less than equal. So Stage 3 might manifest in a family as a paternalistic caregiver, a parent or spouse not letting the disabled family member have autonomy. It might manifest as seeing disabled people as amazing, inspirational kind-of “other” from ourselves.

And it might manifest as creating programs that give charity or help to people with disabilities. And that's good. And that's better than being at stage one or stage two, definitely, but there's still this element of paternalism and seeing disabled people as less than.

When you get to stage four, which many people in organizations are at, you begin to appreciate the disabled people are equal and have a lot to offer and become committed to providing accommodations, hiring, including disabled people. The only difference really between stage four and stage five is that in stage four you might not be proactive about inclusion. So you might be very happy to accommodate someone who requests accessibility. Maybe someone requests a sign language interpreter, or braille, or something like that. But you might not consider the fact that there might be other people in the future who would need the same accommodation. You might also focus only on one type of disability and not other types of disabilities. Certainly, I was in that stage for a long time, of only focusing on blindness and not other other types of disabilities.

And then stage five, which is disability justice. And I emphasize that stage five is kind of like an asymptote or an ideal that probably nobody is really ever able to make it to. But stage five is what we strive to achieve. And in stage five we truly consider the fact that one in 5 people has a disability. It benefits everyone to be proactive about inclusion and accommodation. So one example might be writing image descriptions for your social media posts, even if you don't have any blind people that you know who are following your social media, creating those image descriptions with the expectation that somebody might benefit from them.

Disability justice is also intersectional, so it appreciates how disability intersects with other factors like race, socioeconomic status, gender identity, things like that. As far as how organizations can get closer to stage five, I think, again, it really starts with centering and listening to the lived experiences of disabled people. So getting disabled people in leadership roles having committees or work groups that are focused around disability issues and also really looking inside and being self critical and recognizing our challenges with getting to stage five on an individual level. So you might kind of look back and think of a time when you didn't accommodate someone with a disability or where you turned away or didn't make eye contact with someone who looked different. Or where you were super helpful to someone with a disability but you weren't sure if you saw that person as an equal.

So I think if we all go inside and really think as individuals about times when we maybe didn't measure up to stage five, we can all make changes so that we can all get closer to stage five.

Susanna Smith: I really like that because it's aspirational, right? And you're acknowledging that stage five is the goal but that we don't ever fully arrive. But it's the goal we should keep striving for.


[20:24 - 22:24]

Susanna Smith: So, Arielle, how do you think we can shift people's mindset around inclusion?

Arielle Silverman: So I think that's the million dollar question. It's something that we're all trying to figure out. How do we get people to care about inclusion?

My first reaction is we know that attitudes—and we call it the ABCs—attitudes are a combination of affect or feelings; behavior, or what we do; and cognition, or how we think. Interventions to change attitudes will need to act on at least one of those things.

So when we think about affect based interventions that is getting people to emotionally care about inclusion, or getting people to feel more comfortable around people with disabilities and a lot of that requires exposure, building relationships, having people with disabilities in prominent roles where they're interacting with having contact with influential people in an organization.

The B is for behavior. So if we can get people to take small steps to be more inclusive, maybe get people to provide image descriptions on social media, for example, that's a really small behavior, but it shows a commitment to inclusion. And when people start doing that, when they monitor their own behavior, they realize, “Hey, I'm doing something to further inclusion. Maybe I should be doing more.”

And then the C for cognition that is really just educating people and giving people information. And there's a lot of ways to do that.

AFB has created some materials for people to learn about inclusion that you'll see on our website. Many disability organizations are engaged in creating written and video-based materials that people can view or or listen to, or watch or read in order to learn about how to be more inclusive.

[22:24 - 25:14]

Susanna Smith: So I wanted to shift a little bit towards the world of medicine and genetics, which kind of dovetails with what you're saying. I think within medicine and genetics the field is often pervaded by ableist views. So what do you wish people and clinicians understood better about your lived experience as a woman, an advocate, and a researcher, who is blind?

Arielle Silverman: As a starting point clinicians should recognize the high quality of life achieved by many people with disabilities. I think they also need to recognize the role of the built environment and the fact that a physical or mental condition can have very different impacts in very different environments.

There needs to be a lot more cross talk and communication between medical professionals and disability advocates, service providers, disability advocacy organizations. So that, for example, when someone receives a diagnosis of, say, autism. They get referred to an autism support group that's neuro-affirming, for example, right away. Or if someone receives a blindness diagnosis, they get referred to the local blindness agency depending on their age, either early intervention or adult services. They get referred to support groups or consumer groups of other blind people, who are living the lives they want, living high quality of life. So there needs to be a lot more communication back and forth between medical community and the disability advocacy community. And there's research documenting this gap between the quality of life professed by people with disabilities and what medical providers think their quality of life is. So we know that there's a gap. We know that there's an underappreciation of the quality of life that we can achieve with proper supports. And then, lastly, I would say, there's definitely an issue with a misunderstanding of invisible or episodic disabilities.

And this is not part of my lived experience. But this is what I've heard from a lot of fellow disability advocates, who have invisible conditions, that they feel invalidated when they go to medical providers with complaints that their experiences are chalked up to psychological factors rather than looking for physical causes of symptoms. Sometimes they have to go to many different providers in order to get a diagnosis or to get treatment and people with chronic pain feeling dismissed when they express their experiences with pain. So I think there needs to be more education to the medical community about some of these episodic or invisible disabilities. And the fact that someone might look healthy, or they might feel healthy one day, but they might actually be experiencing significant impairments.

Susanna Smith: Yeah. And I feel like that really relates back to your ideas about disability wisdom because there's an aspect of trust, right, trusting people's experience, trusting people to be able to speak for their own experience and speak for their own needs and then trusting, in fact, that what they say they need is actually what they need and really supporting them to be heard.


[25:15 - 29:55]

Susanna Smith: So I want to talk a little bit about prenatal testing. Because when you were born in the 1980s, LCA, the genetic condition that causes your particular form of blindness could not be detected prenatally but today it can along with a lot of other genetic mutations for a wide variety of conditions.

And for some people living with genetic differences like hereditary deafness or Down syndrome the biological differences they carry are foundational to their identity, culture, their community. And not something they would readily change. But for some other people, like people living with phenylketonuria, which involves eating a highly restricted diet and taking a lifetime of nutritional supplements, they might welcome a corrective therapy if they could eat normally. So given that genetic screening and testing has become a standard of care in prenatal medicine, how do you think genetic counselors should approach prospective parents when talking about the wide variety of genetic differences and disabilities?

Arielle Silverman: So, first  of all, I want to distinguish between what I would call prenatal testing, and what I would call prenatal treatment. So when people talk about prenatal testing, they often talk about it in this dualistic way. Where it's either you test and then if you find something you abort or you do prenatal treatment versus not testing at all. And then just taking whatever happens and not knowing about it ahead of time. And I think that potentially there's a third category for people who test, get the information, decide not to proceed with treatment or termination of pregnancy but just have the information, and be able to start building those networks and building up their knowledge of the condition. And that probably makes the most sense if someone carries a gene where they already know that there's a decent chance that their unborn child could have a particular condition. Although it could also make sense even in cases where the condition is not expected at all.

So I would make that distinction, and I would say that in many cases prenatal testing is probably a good thing in terms of just parents knowing ahead of time what to expect and being able to gather that information, especially with rare conditions. It can take time to find support groups and find the doctors who are knowledgeable and get connected. I don't have children but I can only imagine how hard that would be if you have a newborn baby in your life to be able to have time to build those connections.

I mean, certainly, if my parents had known ahead of time and were able to meet the early intervention and the blindness agencies sooner, that I think that only could have benefited my life.

I think the distinction is whether you do genetic testing and then what do you do with that information. And that's where a lot of ethical questions arise about termination of pregnancy. When is that ethical or doing prenatal treatment? If that's available for the particular disability in terms of what I would want genetic counselors to know. 

I think again the most important thing is knowing what the supports are having connections with organizations or people who have lived experience with at least some of the most common genetic conditions. So that if expectant parents find out that they are going to have a child with a particular condition the genetic counselor or the OB can refer them out to talk to people who actually have the condition or parents of kids who have the condition and really get a balanced perspective on what it's like to live with that condition or how it affects family life that is absolutely crucial in my mind. Before somebody makes a decision about pregnancy termination, they need to know what to expect in a balanced way and not just the clinical implications of how likely it is that their child will have X impairments. That's very important information but it's also important that they know what the lived experience perspective is. So instead of just hearing, “your child is probably going to have no sight,” to be able to meet actual blind people, who are working and living and raising families and all that.

So the more that genetic counselors can build those connections the better. And then, I think, also just providing as much balance as possible, and saying, “Yes, this disability is probably going to happen. Yes, it will affect these domains of life for your child. But there are people living with this disability who have made adaptations, who have been able to adapt to the environment, who are living with high quality of life.”

Susanna Smith: Yeah. And I've talked about this in other episodes. What I see as a real emotional disconnect that can occur in the genetic, counseling interaction. And I think often when you're just dumped with statistics or likelihoods of certain things occurring in your child's life that isn't really meeting parents where they are. They probably do want to speak to other parents or other people living with that disability or difference, and just ask real questions like, “How will this feel for my child? Or how might this feel for our family?” and not just be dumped with sort of the science and the data. So I agree, the more of those types of referrals and connections that can happen the better.


[29:55 - 35:15]

Susanna Smith: So one of the stories you tell in your book is about being in an advanced math class in high school. I love this part of the book because the teacher admitted to you that he was surprised that you did really well. He had expected you to struggle because you were blind, and that underestimation of your abilities, and the fundamental misunderstanding of your learning style tamped on your motivation to continue excelling in the class.

But one of the things you write about is that you thought that that teacher had likely never worked with a blind student before he met you. And he probably didn't understand the methods that blind people use to do math and that really provoked my curiosity. So could you describe the differences between how a blind person and a sighted person does complex math? 

Arielle Silverman: Absolutely. So I'll make another disclaimer. I've not taken a math class in twenty years. And there have been huge leaps in technology that blind people are using for math and science computations.

I would say the first skill that I learned for math is probably similar to the first skill that sighted people learn, and that's mental math. So doing computations in my head 4 times 4 is 16, 5 times 6 is 30, etc.

It was, I believe, initially based on memorization. But there's also a computational process that human brains can do that, I believe, is not based on sensory inputs. There's another part of our cortex that does mathematical calculations. And sometimes we might perceive the results of those calculations in sensory terms. So when I do 5 times 6 is 30, I do have a mental representation of the braille number 30 under my fingers. So I do kind of a little mental simulation which for a sighted person would be picturing the print number 30. But I believe mental math is kind of independent of sensory modality, although I don't know the neuroscience on that, for sure.

When I was in kindergarten or first grade, those years, I was taught to do arithmetic, using a tool called an abacus. An abacus has four beads on one side, one bead on the other. You move the beads around to represent digits. Then you can add and subtract by adding one digit to the tens place and then subtracting from the digits on the ones place and so on. So it's equivalent to what I've come to understand people call carrying numbers. I didn't learn the way sighted people do it so I don't know exactly how that process works for them. But the abacus provided a tactile representation of digits that I was able to manipulate, add, subtract, multiply, divide.

Then when I got to around middle school and I started doing algebra, I would write equations on a digital braille device. In those days it was called a braille lite. Now there are much more sophisticated digital braille devices. So I could write the equations, and I could feel them see them in braille, and I could manipulate them using the braille. And kind of go through each step of the algebraic computation and end up with a result that I could then print out and send to send, you know, email or print out and give to my teachers. And I eventually got into calculus and kind of continued to do things the same way. I had braille copies of the textbooks. I also did have access to tactile representations of graphics.

So, for example, when I learned about parabolas and hyperbolas, I would have kind of raised lines that would open on the top or open on the bottom, and I was able to feel what those graphs looked like.

When you get into really advanced math, And I didn't really go past the first year of calculus, but I did take a lot of statistics for my work, and then I think there's some divergence in how blind people prefer to process things. So there are some of us who benefit a lot from tactile representations of graphs or even sometimes three-dimensional in geometry, for example, three-dimensional representations of cubes and things like that.

I never found those representations particularly helpful, I think, for me my strengths are more verbal and mathematical rather than spatial. My spatial sense has always been the weakest capacity that I've had. So I kind of stopped using the tactile graphs. I just didn't find them that helpful and relied a lot on verbal descriptions of graphs. And once you get into college level math and statistics, you start using computer tools, you're not actually physically manipulating numbers anymore. You're using digital tools to perform calculations.

So by that point, you're not using vision. You're not using any sense. It's all computer based. You're just using senses to interpret the results the computer spits out at you. So then that leads to a whole different issue, which is that some of those tools do not play well with screen reading technology. I use a program that verbalizes what's on the screen. And that program doesn't always interface well with advanced mathematical software. That's a battle that we're continually fighting with many different software developers. And so some of the workarounds that we use might involve having a sighted person read things to us, or enter data for us, or switching to a different tool that is compatible with screen readers.

Susanna Smith: Yeah, that's fascinating and really interesting to think about the ways I learned to do math and the other ways for doing it.


[35:16 - 36:43]

Susanna Smith: So do you consider being blind a form of neurodivergence since your brain is doing the same things, but just going about it differently?

Arielle Silverman: Short answer is, yes. I think people with congenital blindness like me are absolutely neurodivergent because we've never had visual input. So our brains have got to be different. And I will say that a lot of congenitally blind people have traits, or at least had traits in childhood, that overlap with other more commonly recognized forms of neurodivergence, like a lot of blind people have sensory processing differences maybe dislike of certain food textures, or touching certain things, or sensory-seeking behaviors, stimming and sometimes even like autistic ways of communicating and things like that. So there's a lot of overlap. But there's also a lot of variability within congenitally blind people in terms of which neurodivergent traits we might have. And I've been in conversations even with people who have my same eye condition, who have LCA. And we all identify as neurodivergent but in very different ways. So some of us like, you know, a lot of movement, and some of us don't. Some of us like to spin around in circles, and some of us don't. Some of us, you know that there's just so many differences.

For people who acquire vision loss it's less clear to me whether they would be considered neurodivergent because their brains developed with visual input. And then they kind of adjusted and learned how to use other sensory inputs to perform tasks. So there may be some changes in kind of brain function that go along with acquired vision loss. But I don't know how I would classify that if I would classify that as neurodivergent.

Susanna Smith: Thank you, Arielle.


[36:44 - 39:37]

Susanna Smith: So you've also worked with young people who are blind, or have other types of disabilities or differences, including kids who are neurodivergent. Can you talk a little bit about that work and your views about how we can better support kids with disabilities?

Arielle Silverman: My direct work has been with teens and young adults who were blind, and some of them also had neurodegen diagnosis. Some of them had intellectual disabilities, autism, ADHD, and other sorts of neurodivergent diagnoses. And some of my advocacy work now is more generally related to neurodiversity, even without blindness.

And a lot of what I learned from those students has to do with acceptance and meeting people where they are and respecting people's autonomy and their different ways of doing things. So I learned, for example, that some people have difficulty in crowded spaces or some people might have difficulty with certain sensations. Some people might have difficulty with things like social norms, or making eye contact, or things like that. I learned that when you respect those differences and you celebrate those differences. And you give those students opportunities to do things where they excel and where they're successful, you build a really strong relationship. And what happens is that within that relationship students become more willing and able to push themselves and challenge themselves.

So I think of a concrete example. I might think about a student who has difficulty in a crowded space, and maybe gets overwhelmed and walks out of the space. And instead of assuming that they're not trying, or that they don't want to be there, or that they're trying to get out of work, or any of those things, what I learned is that if you talk to them, you find out what their experience is like. You give them opportunities to take a break and do things that they enjoy. Then the student actually wants to return and participate and push themselves. Or I did some work with internship placements and work experience placements. There might be a student who could not find any success in the kind of the traditional internships that they had tried. But if they were placed in an environment where, say, they got to compose music or they got to do something related to their special interest, all of a sudden they became very capable and very successful. So if we can match the environment to the strengths of the individual, we can really bring those individual strengths out and allow them and support them in excelling.

Susanna Smith: Yeah, I love that, and I love the story you told in your book about successfully placing a student in a music internship where he was able to excel. 


[39:37- 41:08]

Susanna Smith: So thank you, Arielle, for joining me today on Genetic Frontiers for anyone listening who would like to learn more about Arielle's research with the American Foundation for the Blind, please go to https://afb.org/research or to disabilitywisdom.com. And you can find Arielle's book Just Human: The Quest for Disability Wisdom, Respect, and Inclusion in our show notes below and it is also available on Amazon.


Genetic Frontiers is co-produced by Brandy Mello and by me: Susanna Smith. Music is by Edward Giordano and design by Abhinav Chauhan and Julie Weinstein. Thank you for listening to this episode of Genetic Frontiers connect with us at geneticfrontiers.org or on Instagram and Linkedin at Genetic Frontiers, to continue the conversation. If you enjoyed this episode and would like to support our independent production. Please make a donation to Genetic Frontiers through our Patreon account.