Episode 51 – Unstoppable Progress with Heather Stone
Who says we cannot be “unstoppable”? Today I would like you to meet Heather Stone. Heather, Ph.D. is a Chicago area scholar, clinician, consultant, author, and advocate for people with disabilities. Heather has been a person with low vision her entire life. At first, she was not diagnosed as such even though she could not see the blackboard in school and regularly failed in her classes. Eventually, she was diagnosed with Stargardt’s Macular Dystrophy at the age of fifteen. Isn’t it interesting that once her eye disease diagnosis was made and that accommodation were made in school for her, she not only succeeded in classes, but she excelled? And thus she became a recognized scholar. She received her Ph.D. from the University of Illinois in 2016. Of course, that was not the end of her adventure and life’s efforts.
These days you can find Dr. Stone doing ABA therapy at a clinic in Chicago’s North suburbs, consulting with large healthcare organizations for The Exeter Group, or at home on the North shore with her two small children.
Heather has written a book entitled “Girls with Autism Becoming Women” which was published in 2018. She is working on another book which we will tell you more about once it is published or when Dr. Stone comes back to tell us about it.
Heather is the epitome of what it means to have an unstoppable mindset. I hope you enjoy our episode and that you take away some great insights from it. I know I did.
About the Guest:
Heather Stone, Ph.D. is a Chicago area scholar, clinician, consultant, author, and advocate for people with disabilities. She received her doctoral degree from the University of Illinois at Chicago in 2016. Coincidentally, she was also diagnosed with a rare, genetic eye disease called Stargardt’s Macular Dystrophy at UIC 23 years earlier.
Dr. Stone is a legally blind, Jewish woman who works with and studies populations of people with disabilities, primarily children with Autism Spectrum Disorder ASD.
Before completing her doctorate, Heather received a BA from Brandeis University with honors in Sociology and a double major in African and African American Studies, for which she was a commencement speaker. She lived in Hyde Park while working on her Master’s degree in Social Sciences at the University of Chicago.
Dr. Stone’s book, Girls with Autism Becoming Women (2018), was released by London-based Jessica Kingsley Publishers and is available via most retail outlets.
These days you can find Dr. Stone doing ABA therapy at a clinic in Chicago’s North suburbs, consulting with large healthcare organizations for The Exeter Group, or at home on the North shore with her two small children.
Look for the recent interview with Dr. Stone at Inspiration Matters
Connect with Heather on social media
About the Host:
Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog.
Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT&T, Federal Express, Scripps College, Rutgers University, Children’s Hospital, and the American Red Cross just to name a few. He is an Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association’s 2012 Hero Dog Awards.
Thanks for listening!
Thanks so much for listening to our podcast! If you enjoyed this episode and think that others could benefit from listening, please share it using the social media buttons on this page. Do you have some feedback or questions about this episode? Leave a comment in the section below!
Subscribe to the podcast
If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can also subscribe in your favorite podcast app.
Leave us an Apple Podcasts review
Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts.
Michael Hingson 00:00
Access Cast and accessiBe Initiative presents Unstoppable Mindset. The podcast where inclusion, diversity and the unexpected meet. Hi, I’m Michael Hingson, Chief Vision Officer for accessiBe and the author of the number one New York Times bestselling book, Thunder dog, the story of a blind man, his guide dog and the triumph of trust. Thanks for joining me on my podcast as we explore our own blinding fears of inclusion unacceptance and our resistance to change. We will discover the idea that no matter the situation, or the people we encounter, our own fears, and prejudices often are our strongest barriers to moving forward. The unstoppable mindset podcast is sponsored by accessiBe, that’s a c c e s s i capital B e. Visit www.accessibe.com to learn how you can make your website accessible for persons with disabilities. And to help make the internet fully inclusive by the year 2025. Glad you dropped by we’re happy to meet you and to have you here with us.
Michael Hingson 01:20
Hi, and welcome to another episode of unstoppable mindset where inclusion, diversity and the unexpected meet. And there’s a reason I’m saying that because I just discovered that our guest today and my mother, her maiden name anyway, is the same. And she lives in the Chicago area. And my mother lived in the Chicago area for a long time. So Heather Stone, welcome to unstoppable mindset.
Heather Stone 01:55
Thank you so much for having me. I’m very excited to be here.
Michael Hingson 01:59
We could we could probably go back and compare notes further because before they lived in Chicago, my mother and her her family lived in New York, I think in Brooklyn.
Heather Stone 02:12
Oh, my family also was in New York before they came to Chicago.
Michael Hingson 02:18
This is getting scarier. So everyone, there is a mystery to solve.
Heather Stone 02:26
My parent, my grandfather came from Warsaw through Paris, then to New York, and eventually Chicago.
Michael Hingson 02:34
There you go. And the only thing none of us can ever find that we have is a link to Garrett of Garrett’s popcorn, so we still have to pay for it. Well, you Heather is an expert on disability and inclusion studies. And we’re going to get into that, but why don’t you start now that we’ve given some of our history? Why don’t you tell us a little bit about you?
Heather Stone 03:00
Sure. Well, once again, my name is Heather stone. I have a PhD in disability studies from the University of Illinois at Chicago. My experience with disability is interesting as it is for most people. I did not know I was visually impaired until I was 15. So I never remember seeing a chalkboard in school at all, I have no memory. But when my parents would take me to the eye doctor, there was nothing that he could detect at the time. So you know, he mentioned to my parents, well, she might just be kind of exaggerating to get attention. So as my life progressed, I was a terrible student. I was getting in lots of trouble. And I couldn’t see. So it wasn’t until I failed the vision test for my driver’s permit, that my parents really became alarmed. And at that time we revisited the family ophthalmologist and he said, Oh, you know, I got this new piece of equipment. And, you know, I don’t know if it’s going to be effective for you. It’s usually just for older people who have, you know, this disease, macular degeneration. This test is called the field of vision. Let’s just put her on it, you know, let’s just see what happens. And lo and behold, it revealed that I had two central blind spots and both eyes. I was then referred my family was referred to Dr. Gerald Fischman. Who I think at this point is still the the world leading right knowledges although he’s retired now. Just so happened to be a UAC And so I was referred to him. And then I was diagnosed with Stargardt’s macular dystrophy when I was 15.
Michael Hingson 05:10
That certainly had to be a shock. How did your parents deal with that?
Heather Stone 05:15
I mean, it was a shock to all of us. It answered a lot of questions. It put a lot of things into perspective. You know, me to this day, it’s troubling for my parents who are, you know, educated people living in the suburbs of Chicago with lots of resources. And still, with all of those circumstances, My diagnosis was delayed so long, and this is like, major consequences for my life. Um, you know, everyone was telling me, there’s nothing wrong with you. But yeah, I couldn’t see anything. And there, they said, there was nothing wrong with my vision. So, you know, as a, as a young person, as a teenager, I was like, Well, I guess I’m just stupid, you know, I couldn’t come up or crazy. I couldn’t come up with why I couldn’t see and why nobody believed me. So in getting the diagnosis, it was, you know, a justified a lot of things. And it. I had a big chip on my shoulder, because I realized that the problem wasn’t that I was stupid, or crazy, that there was a physical biological problem going on. And I had been right. And I realized, not only was I not stupid, I think I was kind of smart. You know? I am I am I, you know, we contacted the high school. And this was, I think, in 1992. And they let us know, well, you’re lucky because this new law, the Americans with Disabilities Act, was just passed two years ago. And this is going to be really great for you because it mandates you know, equal access to, to an education. And at that point, I was like, okay, you know, give me the material in a way I can see it. And let me show you what I can do. And I enrolled in AP and accelerated courses. I got A’s, I took the AP exams, I got a five on the AP European History test. Five, and that’s the highest score, you get five on the AP English. I passed one other AP tests, which made me an AP Scholar. I did really well on the AC t, because I was able to take it in large print. With a little extended time. I set my sights on going to Brandeis University in Boston. I was accepted early admission. And I had, I mean, college is just the best. And I had such a wonderful time at Brandeis. And, you know, pursued academia. As far as I as I could. I eventually did my master’s degree at the University of Chicago, in the Masters of Arts program in the social sciences. And that was a really good opportunity for me to take courses throughout the social sciences. I had been a sociology and African and African American Studies major at Brandeis. And I was really, I was glad to have this opportunity to take sociology, psychology, anthropology courses, and I realized I didn’t want to get my PhD in any of those. The only thing I wanted to get my PhD in was at UIC and disability studies. And, you know, there’s, there’s circles these patterns in our life and the fact that i i keep returning to UIC through all these different circles and if you know the history of the of the of the school, you know, that it was once called the circle campus. So, I enjoy the cyclical nature of my visits to the University of Illinois. And I graduated with my PhD from UIC 2016 And that was very exciting.
Michael Hingson 09:47
So, you you went up spent a significant amount of time from well High School in 1992. So what year did you graduate?
Heather Stone 09:57
From like from what is In 1995,
Michael Hingson 10:02
okay, so from high school it was 21 years to get a PhD. So you certainly, well, maybe you were but you certainly probably weren’t a student that entire time in terms of specifically being enrolled, you must have had some jobs or where were you a professional student.
Heather Stone 10:22
You know, I have always tried to maintain a balance between the ivory tower and actual real world practice. So, soon after I was diagnosed with Stargardt’s, I got a job when I was about 16, at a summer camp, working, it was a typical summer camp. But my job was to be a one on one assistant or a child with a disability and facilitate his integration into the group. So my first encounter was someone who had autism was this little boy, Daniel, who was five years old going into kindergarten. And, you know, my job was to make sure but he had a fabulous time at camp. And I just, I instantly identified with him connected with him, just became so intrigued by him and his family and this thing called Autism. And, you know, it was really interesting, because I had co counselors, and they were running things for the main route, and they would routinely forget about my camper, Daniel, and I would have to open my big mouth, and you know, make sure that he was getting treated fairly, and that what every other candidate was getting was open to him as well. And I feel like that was critical for me to learn advocacy skills for myself. Because at that time, I, you know, a year and a half into knowing that I had this vision impairment and getting accommodation in school. The problem was that my teachers always forgot that I was visually impaired. And in fact, I like to joke that one of my biggest barriers is that I pass so easily, and people forget all the time. I mean, my, even my, my parents, like my best friends, like, everyone, I think the only people who don’t forget are probably my kids, because they’ve had to deal with it their whole life. You know, so, I pass so easily that people forget to make the accommodation. And, you know, later in my life, it’s like, I want the white cane, just so people stop forgetting, you know, like, I don’t necessarily need it to get around at this point. But I’m tired of having to remind people all the time that I can’t see.
Michael Hingson 13:11
So you are considered legally blind? Oh, yes. So, you know, the only thing I would say is, you never know when you need it or don’t. And I agree with you that it’s important to carry it and use it because then people know, although it has its pluses and it’s minuses, concerning how people treat you. But the other side of it is, it’s the one thing that you don’t see that your cane would detect, that could make the whole difference. What do you and well, okay, so for example, one of my favorite stories is about a guy who is losing his eyesight in New Jersey. And I think I’ve told this story a couple of times on the podcast. And he would go every day into Philadelphia, from across the river in New Jersey, didn’t go to work. So he got it was discovered that he was losing his eyesight, and I don’t recall what the reason was. But he went to the New Jersey Commission for the Blind. And he, among other things, was given a cane and they said, but we really think you need to use your eyes as much as you can. And they didn’t really emphasize the cane but they said, you know, you really should start to learn to use it at some point. And so he carried it with him, but he didn’t always use it. And one day he was going to board a train to go across the river. And he was walking along the train. It was a sort of a cloudy day. He got to the place where he was supposed to turn in and enter the train and he turned and stepped into the train except he didn’t step into the train. He stepped into the space between two train cars, because he wasn’t seeing well enough To realize that that wasn’t the entrance to the train, whereas his cane would have found it. And the train began to move. But they did stop it. And they got him up. And he went on into the train at the right place and went into Philadelphia. But he has told that story and said emphatically and that’s why I always from then on used to cane. And so that’s why I say that it’s the one time that you don’t see something that you normally would if you had full eyesight, but the your cane would find that makes all the difference.
Heather Stone 15:34
Right? You know, and if people are going to be obnoxious and rude, you could just weaponize the cable like Daredevil and you know, take them down?
Michael Hingson 15:44
Or you could you know, and then shove them between the cars.
Heather Stone 15:49
Also, you Oh,
Michael Hingson 15:53
but Oh, but it is. Yeah, but yeah, it is, it is an issue. And the cane is the most basic tool. And it is true that oftentimes, people miss assess what blind people can and can’t do. And that’s unfortunate. I hate the term disability, but I don’t have another one. I don’t like differently abled, because we’re not we have the same abilities, we we utilize different tools to get there. So I haven’t really found a better term. But that’s okay. People have worked in diversity, so that it doesn’t include disability. So disability can be worked just as well and be a positive thing.
Heather Stone 16:35
Absolutely. I mean, I see it as a point of pride, you know, I’m proud to tell people that I’m, that I’m disabled, and that I’m an advocate for people with disabilities. You know, I’ve always tried to recognize the people at the margins of our society, and who, who isn’t being treated equally or fairly. And I feel like people with disabilities are often you know, left out of the, of the conversation about diversity, equity inclusion. And, you know, I feel like people with disabilities really have the greatest struggle to get equal rights at this point. But, you know, this early connection I had with this child with autism, and advocating for him, gave me some of those early skills to advocate for myself. And gave me a sense of, of this cross disability connection and pride. And, you know, though he was autistic, and I was blind, I could identify with his inability to make eye contact, for example, like there are consequences if you don’t, if you can’t make eye contact, or if it’s difficult, you know, the concept of neurodiversity, which is a huge a huge philosophy movement, coming from the Autistic community. And, you know, there’s a lot of celebration of the fact that like, there’s diversity within our biology, there’s diversity with our neurology, and these are things that make life more interesting, more nuanced, more textured. And, you know, it’s not all bad, that there is a lot of constructive, productive, positive things that I’ve learned from being disabled.
Michael Hingson 18:54
The bad is usually what people make it, as opposed to it being real. This whole idea that it’s bad to be a person with a disability, it’s bad to be blind. And blindness has been cited by the Gallup polling organization. As in the past, one of the top five fears we face not disabilities, but blindness. It’s, it’s all perception, as opposed to reality.
Heather Stone 19:26
Yeah, and in this case, that’s literally perception
Michael Hingson 19:29
is literally perception. You know, I, I think words matter. And I’ve actually started rejecting using the term visually impaired because visually, we’re not different. You don’t change your appearance simply because you go blind and we talk about visual things. We’re not visually impaired. I don’t like vision impaired a whole lot, but I use vision impaired. And when people use it, I encourage that because I think it’s more relevant. In reality, I think I Have lots of vision. And as I say to people, I just don’t see so good, but you know, but the reality is vision impairment is a lot more of an accurate term than visually impaired. And words matter, because that tends to, to denigrate us in ways that it doesn’t need to happen or be.
Heather Stone 20:18
Absolutely, I mean, blindness is historically and metaphorically linked with lack of knowing lack of knowledge. I mean, we could come up with about a million different colloquial term that are completely contingent on the concept of blindness, you know, blind faith, you know, injustice, that, you know, like, we could sit getting robbed blind, you know, we can sit here and go through a million of it a million different terms. And, you know, I, I agree that that words do matter. And there’s a lot of political implication to these words, which is when things get, you know, real kind of sticky and tricky. You know, I was talking to someone recently, and, you know, I was I described myself, as you know, I’m a blind woman. And this person said, Well, you know, you’re not a blind woman, you’re a woman who has a visual impairment. Have you heard a person first language? I was like, Well, I do have a PhD in disability studies. So yes, I am familiar with that concept. And there are so many disabled people who just reject that like person first, like, really? Do I need to remind you that I’m a person, like, I’m, I’m okay, saying, like, I’m blind in the same way. I’m okay saying, I’m a Jew. I’m not a person who has Judaism. You know, I’m not a person who has blindness. I’m a blind you. And it’s okay.
Michael Hingson 22:01
Right? And it isn’t, you know, and again, it isn’t a visual impairment. It’s a vision impairment, because visually, we don’t, we don’t look different. There are some things that can make some of us different, but that’s true with anyone. But we, we claim to stuff and sometimes we don’t grow like we really should, which is unfortunate.
Heather Stone 22:27
Yeah, and, you know, I always say that, you know, you any given situation you can look at as a tragedy or as an opportunity. You know, there there is a silver lining, I am a compulsive Silver Linings binder. Almost, it’s almost a problem. But, you know, their life is really a matter of perspective. When I was first diagnosed, doctors told me that that was most likely I would never dry. Okay, I won’t drive. And, you know, I thought about how that would affect me. And I thought about how my mom had driven me to preschool. And I wanted to know, how am I going to drive my kids to preschool? And am I going to even be able to find someone who’s going to want to marry me or have kids with me, like, I don’t know anything about this blindness. I’m new to this whole game. And it was always the actual physical, losing my sight was never as difficult as the social ramifications of the shift in identity. Because I was raised as an able bodied person. And then during my adolescent years, it was, guess what, you have this new identity. And it’s this very stigmatized identity that people like you said, there, people are fearful about losing their vision. And, you know, I didn’t really I couldn’t foresee what would happen. But one of the circles came around for me. I was recruited by a study at UIC once again, to use telescopic lenses to get a driver’s license. So after about two years of intensive occupational therapy, and assorted other interventions, I got a driver’s license. And when I was 20 years old, and I drove until I was 42. So, you know, I was able to drive my kids to preschool except my daughter’s final year. And I knew that that annual vision test was coming around, which I had to take to keep my my restricted daylight only A license, and I knew that it wasn’t going to pass, and that I had probably been on the cost for a while. And, you know, I was like, let me I’m gonna decide that I’m just, I’m gonna stop driving at the end of this month, and that’s going to be it. And, you know, it was scary, I guess, you know, not driving anymore after having had it for so long, I was really scared. And the reality is that I really coped really well with, um, you know, it really, it hasn’t been as bad as I thought it was going to be.
Michael Hingson 25:42
How long ago was it that you gave up driving.
Heather Stone 25:45
So that was about three years ago, see how
Michael Hingson 25:49
easily we adapt. Now you’re, now you’re somewhat used to it, and you can get people to drive you around again.
Heather Stone 25:57
You know, I’ve I am working with getting more comfortable with public transportation, doing Lyft reaching out to friends, you know, I have, I have a friend who is bipolar and is on disability, and doesn’t work. So I hired him to be my driver. And, you know, and it’s one of my, one of my favorite concepts coming from disability studies is the concept of interdependence, which I’m sure you can relate to, um, you know, you do this, and I’ll do that and we’re gonna work together and we’re gonna get it done.
Michael Hingson 26:41
Mahatma Gandhi once said, interdependence is and ought to be just as much the ideal of man, as is self sufficiency. And it’s one of my favorite quotes, and a very accurate one that more people really ought to pay attention to.
Heather Stone 26:57
I mean, that is so so true, and so valid. Absolutely.
Michael Hingson 27:04
In reality, if we really looking at things, we’re all interdependent on each other, we just like to think we’re not but it doesn’t work that way. And it’s, it’s really important that we do more, I think, to recognize the validity and value of interdependence.
Heather Stone 27:24
Yeah, I mean, I, you know, I reject independence. I reject codependence. But interdependence is a beautiful thing. And, you know, I think that was really, you know, the core of Diversity and Equity and Inclusion. We’re social animals, we need each other. You know, living through this pandemic is, is improved. We need we need each other.
Michael Hingson 27:59
Yeah, and living through this pandemic? If that doesn’t show us that, then we’re really missing it.
Heather Stone 28:07
Absolutely. And, you
Michael Hingson 28:09
know, we look at look at the things that we’ve learned more and more companies are now recognizing that there is value in letting people do at least some of their work at home, better mindset, better lifestyles, and the work still gets done.
Heather Stone 28:28
Absolutely, you know, mental health matters. And, you know, the Protestant work ethic, you know, isn’t as valid in 2022, you know, like, we can be a little bit more flexible in our scheduling and the way we approach work, or we should be anyway. Absolutely.
Michael Hingson 28:53
So you have a very positive view of blindness and an outlook on on life and so on who’s affected you and who kind of is influenced your, your view of blindness and, and influenced the way you are?
Heather Stone 29:10
Oh, my, I mean, my parents are just so supportive of me, always encouraged me to just go after what, whatever I wanted to pursue. You know, even when other people looked at them, sideways or you no question what they were doing. I’m an incredible downhill skier. In my teenage years, my parents friends are like, are you you know, have you lost it? I still to this day, I’m a great skier. I was a varsity diver. I you know, I decided that I wanted to go to Brandeis. My parents backed me up, they made it happen. You know, so they, they never, I was never fearful you know, and it’s often sort of just like, just my natural personality. And I am a very small petite person. And I’m also blind. So if I don’t open my mouth and speak up, I might get bulldozed. So I’m just used to just opening my mouth and saying like it is and not being afraid. And, you know, to pursue the things that I want when I was 20, or 22, I decided that I wanted to go backpacking through Thailand. So me and my best friend who eventually became an eye surgeon, ironically enough, we went to Thailand for a month, we went backpacking, we tracked through the jungle, we slept in a hut on still, the next morning, elephants were waiting outside our, our little, you know, Fort Benning, and we rode elephants through the jungle to the next village that we were going to stay at, you know, so whatever it is that you want to do, you can do it. And all the things that I’ve wanted to accomplish, I’ve been able to find a way to do it. And, you know, like, I get in where I fit in, and I go where the, where the climate suits my clothes, you know, so if, if it’s not working one way, there’s about a million other ways you can try to do it. And if you shift your perspective, a lot of opportunity may open up. Um, you know, when I tell people that I don’t drive anymore? Well, oh, my goodness, how do you? How do you get to the grocery store? I’m like, um, there’s about a million different companies that deliver groceries at this point. I’ve always hated grocery shopping. So why do it? Like, you know, I haven’t been he I wrote a book, I have all the skills like, what do you need to drive like, uphold a heartbeat and some decent vision? You know, like, I don’t, it’s not necessary. It’s all a matter of perspective.
Michael Hingson 32:27
Of course, it’d be nice. If you did have an elephant to ferry around. That’d be fun.
Heather Stone 32:32
I’m not sure that that would go over in my North Shore summer, but um,
Michael Hingson 32:38
and the food and the food bill would would probably be a little tough, but that’s okay.
Heather Stone 32:43
I don’t, I don’t think my HOA would appreciate the elephant on the property.
Michael Hingson 32:49
Help them to think in broader strokes, change, change the mindset. I agree with you, especially during the pandemic. As I love to say Instacart and Grubhub are our friends and we use them a lot. My wife drives and she uses a wheelchair, but she drives. But especially during the pandemic we have chosen not to go out for health reasons and so on, we don’t go out unless we need to. We got brave last Friday, actually, for the first time and drove to Las Vegas for a concert. It’s the first time my wife has been to Las Vegas since 1995. And we verify that there were probably good reasons not to want to go to Las Vegas on a regular basis. It’s way too expensive and too noisy. But the Michael Buble a concert was great. Oh, that’s awesome. So we we had a good time. And you know, this is the first time that we have made any major trip in well, almost three years. So it’s okay. But we made that choice. And so we don’t regret it. And we stay in and do the things that we need to do. And we continue to accomplish and thrive.
Heather Stone 34:11
You know, it’s good to live a life where you don’t feel like you have regrets. You know, and I tell this to my friend who needs more confidence to approach lady socially, you know, what’s the point of sitting there and thinking about it, like, go over and say hello, you’re never going to know until you try and if worst worst possible scenario she tells you to go away. And you can pat yourself on the back because you you know, had the audacity to try in the first place you tried. Exactly. Um, you know, you I think it’s so important to have goals. And then not be afraid to work really hard. And a lot of people in this day and age don’t might not want to, you know, put in a lot of effort. But if you do you know that I think, you know, you can succeed and you can achieve the things that you want. When I was a PhD student, and I was thinking about my dissertation, I started reading autobiographies written by people with autism. And I found them to be really, really interesting. And every time I would read a really good publication about autism, it seemed like they always came from Jessica Kingsley publishers in London. And I used to fantasize as a lowly grad student will maybe one day, I can publish a book with Jessica Kingsley publishers. So after graduating, and presenting my dissertation successfully, I revamped it, pitched it to Jessica Kingsley. And my book, girls with autism becoming women came out in 2018. So that was a dream come true. And a, you know, a goal that took a long time to accomplish. Tell us about the book,
Michael Hingson 36:31
if you would, please. Absolutely. So
Heather Stone 36:33
my book is comprised of seven autobiographies written by women with autism. I started out looking at at all autobiographies, but I had way too many. And so I whittled it down to seven American women who wrote autobiographies about their experience with autism. And, you know, look for the themes that emerged, what were What was difficult, what was helpful. And, you know, some interesting themes emerged, and your girls with autism are diagnosed far less than boys with autism. And I really wanted to bring more attention to that experience. And, you know, it’s really interesting, because I always say how I like to go back and forth between academia, and, and practice. So after my book came out, I got divorced, and I had to go go to work full time. And so I got a job doing Applied Behavior Analysis therapy for children with autism. And I was hooked up with this two year old little girl. And the connection that I made with this, with this little girl is profound. And to this day, I still, I’m very involved with her with her with her family. She’s a kindergartener now. But when I met her, you know, the book just came out. And I remember trying to get her to take a nap one day, and it’s telling her like, I wrote the book for you, little girl. Um, and in the field of ABA, they really frown upon forming this type of relationship with a client, which is one of the many drawbacks of ABA therapy, which is another conversation, but my focus, and my interest was on this child, her family and her success. So after doing working doing ABA for two years, I left the field. And I think my, my next book could be about could be about ABA. There, it isn’t all bad. But it needs a lot of attention, a lot of regulation and a lot more oversight than what is currently happening now.
Michael Hingson 39:25
We so often tend to not acknowledge it seems or recognize the validity of establishing relationships and developing trust. I mentioned I think before we started today that I have interviewed a gentleman Dr. Jani freezin. And he talks about Universal Design Learning. And specifically, we talked about how he learned to interact with students and learn And that in reality, for a while, when he first started teaching, he had a real problem, getting students to really interact with him and view him as a positive influence. And one of the reasons was, they had another teacher, they like to apparently didn’t come back one year. And literally two days before school started, he began teaching the class while he was hired to teach the class. And it took a while to get students to develop a trust in him. But he validates, and in his finding, still years later, how important is in all the work that he does, that you need to develop that trust in that relationship?
Heather Stone 40:46
I think the relationship is is critical. And nothing is gonna get done without that trust without building that relationship. And, you know, unfortunately, in in the ABA industry, they miss the forest for the trees quite often. And what, you know, what is difficult for people with autism? Well, you know, socializing and communication, those are challenges. And one of the rules of ABA is that you can never eat with your client. If they’re having dinner, and you’re there, your job is to, you know, do therapy for the client, you may not eat. And I’m thinking, what could be more human, more social than sitting down together in eating food breaking bread? Like, what are you trying to do here? What is the goal? Well,
Michael Hingson 41:51
it shouldn’t be establishing a relationship, it should be bettering all of us. And the reality is, I’ll bet. If you analyze, and you probably do this, you learn as much or more from persons with autism, is they ever learned from you?
Heather Stone 42:10
Oh, absolutely. I mean, I look forward to the likes, four hours a week that I get to spend with this girl. And I enjoy it probably more than she does. Um, but, you know, I care deeply about this child and her having a successful life. And, you know, I know a little bit about it, so I can help out. And that is so much more important than this company and their guidelines and their restrictions and everything like that.
Michael Hingson 42:53
Yeah, how are things? How are things going with her?
Heather Stone 42:56
She’s amazing. I am constantly in awe of this child. And it’s so much fun getting her getting to see her grow up. And, you know, I knew when she was two and a half that she had language, she spoke very, very quietly, and under her breath, but I knew it was there. And I just put all priority on getting her to talk. I’m like, all the other behavioral stuff, whatever we’ll deal with that later, we have this limited timeframe, where, you know, we’re gonna get her talking really fluently. And her, she speaks so perfectly. Her grammar, her pronouns, all of the things that are so challenging for people with autism. Here she is in kindergarten, it’s all perfect. She is in a mainstream kindergarten, she has a one on one aid. She has friends, she, she’s amazing. And I get to see all these little milestones, she was asking me how to spell something. And she was holding the paper and she was holding the marker. And she asked me, How do you spell note? And I was like, Oh, isn’t taking note? Yes. And she looked, she looked me right in the eye. She says, what’s the first letter I say? And she looks down and she writes it. What makes eye contact again with me did it each time and I was like, I’m like, we’re the experts who are who can enjoy this moment with me like this is so huge. And you know, she has friends, the has interests. She knows she’s a great artist, you know, the sky’s the limit for this girl. And so much of it has to do with the fact that she’s got the supportive family and that she got diagnosed early. And when I first met the family, you Oh, two and a half, she had just gotten this diagnosis. And it’s a lot to handle for the entire family and, and the grandmother was taking her and picking her up. And I could just, she was still upset, because grandmother was so upset, just not knowing if she was doing the right thing for her grandbaby, you know, and, and all the other therapists are trying to deal with her. And I was like, listen, I mean, you know, I was like, she just needs to be reassured that what they’re doing is the right thing. And I said to her, I was like, listen, I wrote this book, I’ve done all this research, my research shows that the two biggest factors in having a positive outcome and achieving what you want is family support. And early diagnosis, I was like, so she’s two, here you are, you care, Mazel Tov, you are doing it, you know. And if something changed in her life, something changed, because now she has the confidence. And she knew, I’m doing the right thing for this granddaughter. And able to galvanize it and rally the whole family around this girl, the whole community. And because of that, you know, fingers crossed, she can achieve what it is that she wants to achieve.
Michael Hingson 46:31
She becoming much more socially outgoing, then the good little girl,
Heather Stone 46:38
spheres always been, and this is really interesting. girls with autism are more socially motivated than boys. And I’ve noticed this in the literature, I’ve noticed that in the clinic, there are some boys with autism who will be socially motivated. You know, it’s not like a rule that they’re not. But every female client, I had wanted to be around other kids. And she, from the time she was three, want it to be with her friends. And that was the motivating factor. You know, what if you want to be with your friends, you know, you need to put on your shoes, and you can’t hit them and you know, this stuff the other, so let’s go be with your friends. And, you know, it’s getting to be a higher level of friendship for her. So, um, you know, she stepped on her friend’s fingers on the playground one day, and the friend said, you know, I’m not going to be friends with you anymore. And she thought that was that it was over, you know, and she was really upset that this friendship should end you know. And, like, we talked about it, and she made a note for the friend and she apologized for the front to the friend. And the friend said, you know, okay, um, so I don’t want to draw this beautiful, perfect image because there are challenges and meltdown and serious setbacks. But she, she is socially motivated. Many women with autism are socially motivated. Out of the seven women in my book, all of the women who wanted to get married did except for one. And the one woman was born. She was I think, the oldest author. She was born before any sort of legislation, there was a time where she did not attend school whatsoever, because the principal just didn’t want her there. And there was no Ada, there was no IDE a there was nothing so she just didn’t go to school. The parents were against her in every way really just set up obstacles, she met someone at some sort of mental health, social event. And they really liked each other, and they got engaged, except their family showed up, they were at the mall on a date, their family showed up and like physically, like, took them apart. And like made every effort so that she could not get married. And you know, it just, again, it it demonstrates that if you don’t have the support of your family, you know, you’re you’re you might be sunk.
Michael Hingson 49:34
All too unfortunate. And I think any person with a disability who has grown up with that disability has experienced some of that lack of support. And I think you’re absolutely right, there is an incredible correlation between persons who feel positive about themselves and who, in fact have been successful. and the level of support and confidence that they get from their family and others around them.
Heather Stone 50:09
I mean, it, you know, being a person with a disability, you you are born into a system that was not set up for us. You know, now hopefully it’s been retrofitted, and in the future, yeah, we hopefully we can move toward universal design. And, you know, we’re constantly receiving messages implicit and explicit about, you know, our, our ability to belong to the system, you know, do we have a place in this system, and it is difficult to be resilient to a lot of the negative messages telling us like, you know, your square trying to fit in the circular peg. And I deal with that often. You know, in moments of anxiety, I have this overwhelming feel of wrongness, that just, you know, this is wrong, and that’s wrong. And this is wrong, I come out of those moments. But you know, it with love and support. And, you know, my children and my parents and my friends and my community around me. And I tried to, you know, I try to impart some of this, to the people around me, I’ve, I’ve been your, you know, the Jewish principle of tikkun olam to bring light into the into the world. And if I can, if I can bring a little bit of light, then it’s worth it.
Michael Hingson 51:51
It’s a process. And unfortunately, while we’re making some good progress in some ways, we’re also seeing some steps backward in our modern technological world. It’s amazing now, how much easier it is to make things visual, and not worry about other aspects of it. I’ve one of my favorite examples is television commercials, how many today may have music or other things, but there’s no dialogue? So you and I can’t tell what’s going on on the commercials. And for me, the irony of that is that what do a lot of people do when a television show breaks for a commercial, they get up, they go get a drink, or a snack or go to the bathroom? And the commercials that aren’t providing any audio information are lost on these people. So it isn’t just us. Society, though, is excluding us. Intentionally or not? They are and it is something that shows up and people accept it, and there isn’t that much of a hue and cry yet to deal with it.
Heather Stone 53:09
Yeah, I agree with that. 100%. And I think part of this, this mindset, and the direction we’re going in, is you know, we have these virtual avatar, and you can be anyone you want. In you know, cyberspace, you can you can be whoever you want to be. And that’s fun. But guess what, in real life, it doesn’t work that way. No, and people talk about, oh, well, you know, I’ve been born in the wrong body. Well, is there anyone on this planet who feels like they were born into the body? They were meant to have? You know, like, What are you talking about? Like, I’m supposed to be six foot tall. 120 pounds, blond hair, blue eyes, like, that’s what I’m supposed to be that. That’s ridiculous. And the fact is that, you know, we have these biologies, we have this embodiment. And you know, you need to make peace with it. You need to become at home in the body you find yourself in, and the, the, the process for the mindset where you can just become anyone you want to be, I feel as damaging to people with disabilities, because it tells us well, if you just wanted to bad enough, you can be normal. You could be able bodied, don’t you just want it and get some surgery and do this and do that. And it’s setting up a really unfair precedent for us.
Michael Hingson 54:48
So here’s a question. If you could get your eyesight fully restored today, would you or what are your views on that concept?
Heather Stone 54:56
Oh my gosh, that Oh, you’re really cutting to the quick They’re like 100% Guaranteed? Like, sure. I mean, you guarantee it, it’s gonna happen. Yeah, I would. I’ll do anything once.
Michael Hingson 55:16
See, listen to what you just said, though. You’re not desperate to do it. People ask me the same question often? And my responses, I’m sure because it would be a new adventure. But do I need to do it? No, I do not. And because I like the person whom I happen to
Heather Stone 55:37
be. Yeah. And if you want to like the person that you are, you need to accept every part of that person. Exactly. I think when people who don’t have disabilities, look at us, and are sometimes envious of our positivity, or our happiness. And then that makes them even more miserable. Because they’re like, look at this GIMP or look at this, you know, crap. And they’re a mess, but they’re way happier than me. And I’m perfect.
Heather Stone 56:13
It’s like, well, not at all. Like, maybe you are. And maybe you’re, maybe you’re not. This is me. And this is who I am, you know, take it away.
Michael Hingson 56:24
But do you ever get involved with or? Or do you have much knowledge about any of like, the blindness consumer organizations? Do you ever worked with him?
Heather Stone 56:35
No, I haven’t. I’m just curious. One time, a long time ago, I was on a focus group with blind people for like, using a phone. But I think that was my, my greatest
Michael Hingson 56:50
Association. Yeah. Right. Because there, there are many blind people who do have a very positive outlook on on blindness and who truly believe that blindness isn’t the problem, it is our misconceptions, and that we, as blind people can do, what we choose to do, and it isn’t blindness that defines us. But it is still by any standard and uphill battle to get people to recognize that.
Heather Stone 57:23
Absolutely. And, you know, there’s a lot of, there’s a lot of stigma and prejudice and discrimination. And you know, just today I attended a Virtual Job Fair, from the state of Illinois, for people with disabilities, different state agencies that our opening open to hiring people with disabilities. And, you know, a lot of people were asking him, at what time do you disclose your disability during the interview process. And it fascinating because one of the things I do is I’m a qualitative research consultant for a company called the Exeter group. And we lead focus groups consisting of employees with disabilities of a variety of health care, hospitals, companies, organizations. And in every focus group, I do, the concept of when to disclose during the job application process is discussed. And today, they told us, they’re like, don’t tell anyone until you’re hired.
Michael Hingson 58:38
And see, I totally object to that.
Heather Stone 58:43
And this is what they’re telling, this is what the state was telling everyone like, unless you need an accommodation, don’t tell anyone until until you have the job.
Michael Hingson 58:54
When I first began working well, I worked I actually worked for the National Federation of the Blind 1976 to 1978, as part of a project with Ray Kurzweil, the guy who invented the Kurzweil Reading Machine, and then I went to work for Ray. And after about a month, I was given a choice, because I was doing Human Factors kinds of work in both situations. But I was given a choice of either being laid off or going into sales and as I love to tell people, so I lowered my standards, and I went into sales. But the the, the thing I did know a lot was about how to sell professionally. So I went through a Dale Carnegie sales course. And the most important thing that I learned from that course, by far was a real simple sentence turned perceived liabilities into assets. And I believe that blindness is clearly A perceived perceived liabilities. And it’s one of the greatest assets that I have available to me. And I actually use that concept in preparing some letters for resumes. And specifically talking about being blind because as a blind person, I have to sell all the time just to be able to have any chance of being competitive. So do you want to hire me who sells all the time and understands it? Or do you want to just hire somebody who sells for eight or 10 hours a day and then goes home, turn perceived liabilities into assets. So if you want to look at it from a legal standpoint, don’t tell anyone until you’re hired. That’s great. But then what happens when you’re hired, all the barriers go up. Whereas if you deal with it upfront, and create a way to deal with it in such a way that the value you bring can’t be disputed? It doesn’t get any better than that?
Heather Stone 1:00:59
Right. Um, but you know, there are huge challenges. And, you know, I’ve been able to accomplish just about everything that I set out to do in this life. But the only thing that has kind of eluded me so far is I wanted to teach at the college level. I want to be a college professor, and I feel like all doors have been shut to me. There is one blind disability studies. Academic right now. Adrienne Ashe. I’m sorry, not
Michael Hingson 1:01:41
not Adrienne. Not anymore. Georgina cleavage. Yeah.
Heather Stone 1:01:46
And she’s the only one.
Michael Hingson 1:01:49
She she’s not. But oh, no. There are a number of of blind people who teach at the college level. People in the past who taught at the college level, Jacobus tenBroek, who founded the National Federation of the Blind, was originally a doctor of Psychology at University of California at Berkeley. And then he was asked to start the speech department, I think he was asked to start it. But he he took it in a completely different direction. He, when it was formed, he announced or when he was hired to run it, after teaching psychology at the college level at Berkeley for some time, he told all the professors on campus, we’d love to have you join our department. But if you’re going to join our department, what you’d have to agree to do is to take on a different discipline other than your main original discipline of study. Dr. Tim brick always wanted to be a constitutional law scholar. But Berkeley would not let him do that, because they said a blind person could not achieve that and couldn’t possibly study to do law. So when he announced anyone can join the department, but you have to take on a different discipline other than the original one that you have your degree and what do you think he went after? And he became one of the foremost constitutional law scholars of the 40s 50s and up to the mid 60s. But there are a number of blind people teaching at the college level today. And so they’re, they’re out there.
Heather Stone 1:03:17
I would like to be one of them.
Michael Hingson 1:03:20
Let’s let’s chat more about that offline. Because we have to stop because it’s been an hour. We’ve been having fun here. But I’d love to chat with you more about that. And what would be glad to Awesome. Well, Heather, it has been fun having you on unstoppable mindset. And we’ll have to definitely have you back on when you’re hired to be a college professor. But in the meantime, how can people get your book? How can they learn more about you if they want to reach out to you? How do they do that?
Heather Stone 1:03:53
Well, an easy way to start is just google me and my full name is Heather stone. WOTUS. W O D I S. My book girls with autism becoming women is available everywhere in anywhere Amazon, Google Books Barnes and Noble. I’m on all the social media platforms, so you can always reach me that way. Facebook is great. And I’m pretty pumped about responding to questions and and messages. So I look forward to hearing from people.
Michael Hingson 1:04:32
I hope people will reach out and you and I definitely will stay in touch. Great.
Heather Stone 1:04:38
Thank you so much, Michael.
Michael Hingson 1:04:40
Well, I want to thank you, Heather, for being on unstoppable mindset and all of you listening. We really appreciate you being here. Hope you enjoyed this show. And Heather is certainly as great an example as anyone about how to be unstoppable. Everyone can do it. that we all underestimate what we’re capable of doing. And we need to recognize that we’re probably better than we think. And I don’t mean that in a negative or conceited way, but we underestimate our ability. So I hope that people will listen to this podcast and recognize that they can probably do better than they are and maybe do more meaningful things. I’d love to hear from you. Please feel free to email me, you can reach out through my email address with which is Michaelhai@accessibly.com. M I C H A E L H I at accessibe A C C E S S I B E.com. Or you’re welcome to visit our podcast page, which is www dot Michael hingson h i n g s o n.com/podcast. And definitely wherever you’re getting the podcast, please give us a five star rating we’d love. We’d love to hear comments, but always love the great ratings if you’re willing to do that. So again, thanks very much. And Heather. Once again, thank you for being with us. Thank you. Our pleasure.
Michael Hingson 1:06:13
You have been listening to the Unstoppable Mindset podcast. Thanks for dropping by. I hope that you’ll join us again next week, and in future weeks for upcoming episodes. To subscribe to our podcast and to learn about upcoming episodes, please visit www dot Michael hingson.com slash podcast. Michael Hingson is spelled m i c h a e l h i n g s o n. While you’re on the site., please use the form there to recommend people who we ought to interview in upcoming editions of the show. And also, we ask you and urge you to invite your friends to join us in the future. If you know of any one or any organization needing a speaker for an event, please email me at speaker at Michael hingson.com. I appreciate it very much. To learn more about the concept of blinded by fear, please visit www dot Michael hingson.com forward slash blinded by fear and while you’re there, feel free to pick up a copy of my free eBook entitled blinded by fear. The unstoppable mindset podcast is provided by access cast an initiative of accessiBe and is sponsored by accessiBe. Please visit www.accessibe.com. accessiBe is spelled a c c e s s i b e. There you can learn all about how you can make your website inclusive for all persons with disabilities and how you can help make the internet fully inclusive by 2025. Thanks again for listening. Please come back and visit us again next week.