How an adult with special needs lives and copes

Host Amber Smith: Upstate Medical University in Syracuse, New York, invites you to be "The Informed Patient" with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith.

What is life like caring for a sibling with a disability? A new book offers a personal and nuanced view of the experience.

It's written by my guest, Dr. Michael Gordon, who is a clinical psychologist and professor emeritus from Upstate. Welcome to "The Informed Patient," Dr. Gordon.

Michael Gordon, PhD: Well, thank you.

Host Amber Smith: Tell us about your brother. Is he older or younger than you?

Michael Gordon, PhD: My brother David is nine years younger than I am. He's a great fellow. He has had, since he was very little, some intellectual limitations that have very much influenced his life and and mine and the rest of our family and his friends.

But the point of this book is that while he has limitations, he lives a life that is not limited in many, many ways that are important. And so this book is about David, but it's also about David's impact on others, and how working with somebody like him can be an enriching and meaningful piece of people's experience.

Host Amber Smith: What was your collective childhood like?

Michael Gordon, PhD: Well, being very different in age, our childhood was a good one. There was no trauma. We had a perfectly typical, middle class upbringing. It was a good 1950s, 1960s kind of experience. What made it different for me is that I had a brother who needed some extra help, but also got me to realize how important helping others can be, both for the person, but also for myself, as well.

Host Amber Smith: Did you grow up in the Syracuse area?

Michael Gordon, PhD: No, we grew up in New Jersey and Ohio. David moved down to Florida, because my parents retired there, and he was living with them when our parents passed. Then, I became, along with my older brother, responsible for David, which was just a natural progression, because I had always been very much involved in his life. My older brother is three years older than I, so he is 12 years older than David, and so he was pretty much out of the household when David really started needing the kind of help that he got.

And so a lot of the responsibilities and sort of emotional investment came from my involvement.

Host Amber Smith: What are David's special needs? You said "intellectual challenges."

Michael Gordon, PhD: Yeah, he's limited. His IQ is in the sixties. He does things very, very slowly. He doesn't understand a whole lot as others do.

He doesn't have a lot of cognitive abilities and skills typical of others. What makes David so important is he's a living testament to the importance of emotional intelligence, as opposed to just cognitive ability. And he is a walking, breathing poster child for how critical it is to, in adjustment to life, to be able to get along with others, to be able to interact well and to be able to attract people's attentions.

Host Amber Smith: Does he live on his own now?

Michael Gordon, PhD: He does. He always has, for the last 30 years. He lives in his own place in Florida, and in a way that he can walk to most of the places he needs to get to. He's also a master of the bus system, and he does very well for himself, in part because he takes care of himself, but also in part because he has a community of friends and supporters and fans around him that are there for him, at every turn. They're there for him just to keep him busy, they're there for him to bring him to appointments, to share holidays and experiences with.

So he's got this big group of folks who are there to help him along, although he really takes care of himself in a lot of ways. The complications come for things like finances, which I and my older brother take care of; understanding his medical needs -- he's diabetic -- that's a big, big challenge that he needs a lot of help with.

But a lot of the day-to-day stuff he really does quite well.

Host Amber Smith: What are his interests?

Michael Gordon, PhD: He is interested in anything that keeps him busy and around other people. And one of the things that's very clear about David's life that gets you thinking about everybody else's life is that he is very, very interested in two things.

One, volunteering. He loves to volunteer, particularly where he does, which is either in a VA facility or, most of his days, in a retirement community nearby. He's there at about 8 or 9 in the morning and leaves around 4 or 5 in the afternoon. He moves the clients there to the barbershop or the beauty parlor or to their physical therapy appointment.

The other thing that he is very, very involved with is in religious activities. David is a beautiful example of how religion can be important to people, because of the ideas of it, the theology of it, but it also provides a certain framework, or structure, or infrastructure, for somebody's life. And for David -- who really doesn't impose structure himself, doesn't think ahead too, too well, he's pretty much of the moment -- having certain set services every week, where he gets to participate in activities and meet up with people, it keeps him very much knit into a community.

Ours happens to be the Jewish community, but nonetheless, he knows the prayers, he participates in them, and I think he finds great comfort, both in the religious observance, but also just in that he has something to do in a guaranteed, scheduled way. He can see his buddies, people can see him. He can perform various duties that make him feel very good about himself. And one of the interesting things, then, about David is that religion really can provide a whole lot of framework or focus. and that's what he's about. He wants to know, "What am I doing next?"

And with those activities, he can, and as I have wondered aloud in articles and books and particularly this book about David, is the extent to which religion, other theological issues aside, does that for most of us, that those people who observe whatever religion they observe, in part, get a certain degree of stress reduction from it because it's a built-in opportunity for most of us, if we happen to practice, to just step away from the day-to-day, to think about some things beyond just what's happening at the moment, at work or in the family. And to sit back and take a deep breath and just engage in an activity that's repetitive and, I guess, in a Buddhist kind of way, keeps you in the moment and focused. And you can see that for David. You can see that for people around David, and it's just gotten me to realize that. Something I guess pretty simple and obvious to others, but for me it's profound, the extent to which religion, all other things aside and all the things that it can do perhaps for people that aren't so positive, can provide a certain degree of focus and stress relief. That's important.

Host Amber Smith: You were the founder and director of Upstate's attention-deficit/hyperactivity disorder clinic. Do you think your career path was influenced by your childhood with your brother?

Michael Gordon, PhD: I do, I do. How much, I really don't know, but I certainly, because of my brother, from a very, very early age; I was, what, 9? And when he really started to need help, and it was clear that he was different, it got me very much involved in all the systems and school issues and medical issues, actually, that swirl around somebody like David.

So I knew very early on about special-education meetings, and I knew early on about tutors and about assessments and about thinking what it meant to try to think through how best to help David. So from an early point in my life, David became, in a way, a problem to be solved. And what I mean by that is that he couldn't do "X." So we all try to figure out how to get him to do that, what needed to change. And so that kind of attitude of: "All right, let's not bemoan this; what do we need to do to get this to work?" And to get him to be able to have a good life and to get as far as he could get academically, et cetera. What do we need to do?"

So I can't help but think that that early experience at least attuned me to it. When I got to college, I wasn't intending to go into what I went into, into clinical work. But after a while, actually after organic chemistry (chuckles), I started to think, as many do, about alternatives, but this was sort of obvious to me.

And I kind of think that my initial wish to go to medical school, like a lot of my family, peeled off pretty quickly when I realized I could be more helpful to somebody like a David by being trained in nonmedical, but psychiatric, kinds of issues.

Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith. I'm talking with clinical psychologist Dr. Michael Gordon, who is a professor emeritus from Upstate who has a new book about his brother called

The Book of David: On Caring for Siblings With Special Needs."

When and why did you decide that you would write a book about your brother?

Michael Gordon, PhD: Well, I didn't really decide to write a book until relatively recently.

This all started with a short story I wrote for a Dearing Award submission and for (Upstate's) The Healing Muse, which I am thrilled to see still works on in a wonderful way. So I, just like so many people who submit to that journal, I took the opportunity. I had been writing for years and had collections of stories, and I wrote a couple stories.

One was about my dad, called "The One-Man Band," that did win the Dearing Award. And then I wrote a story called "The Mayor of St. Pete," which was about my brother, because my brother is a real celebrity in Florida, in St. Pete (St. Petersburg). You can't go anywhere without just people coming from all points in the area to say hi, to give him something, to tell him about a discount or something like that.

And so I wrote this story about David, and the point of that story is really the point of the book, that although having a sibling like David certainly brings some challenges and responsibilities. it also brings many opportunities for joy and to learn about things that you wouldn't otherwise learn about.

Spending time with a David is like spending time with somebody perhaps from a different culture who you wouldn't run into. And then you realize that that culture has some things that really are important perhaps for you to consider for your own life. And it's the same for a David, where you get to realize, you try to put yourself behind his eyeballs and see the world as he does. And what that can mean in terms of understanding a lot about what's important to you and what your own goals are, et cetera.

And so I wrote that short story, and it was published, and it got some pretty powerful response. And so I wrote another short story a few years later, and then a few years later something else, and got a little more serious. But it's been almost 20-some odd years, 22 years, that I collected these stories and then realized, with some help from others, that this might have some value, in a broader way.

And so I turned it into a book. And that took a long time, but I was motivated by the fact that I realized I was in my 70s -- I'd better get moving on this. And I'm really glad I did.

Host Amber Smith: Do you envision others who have siblings with special needs reading this book?

Michael Gordon, PhD: Well, I sure hope they do. I think that it's a worthwhile book because I studiously avoided turning it into a self-help book. This was the advice of so many people. I've written other books about, as you mentioned, ADHD, and other things that are more of a self-help kind of approach, but I really didn't want to do that here. I wrote this more as a "memoir-as-self-help" book.

And my reason for doing that is that I am fully aware that my experience for David, given my age, how he is, our family's resources, whatever, is very, very different from many other people's and their experience different than mine. And there's no "one size fits all" advice for people with any kinds of issues.

And I've always reacted to self-help books because they make it seem too simple, as if we're all similar or all people with ADHD or schizophrenia or whatever, are all somehow homogenous, and they're not. Everybody's circumstances are different. People's array of skills are different. And so to write a book that says, "Well, you should do this or should do that," didn't make any sense.

The reason I think this book can be useful to others, is that rather than telling people what to do and what I think should happen, based on my particular experience, to really lay out there some principles to follow, to keep in mind, and I'm hoping that people read this and pick out what fits for them, and that's the hope.

Host Amber Smith: Let's talk about some of the things people may learn from reading this book. You talked a little bit already about David's community, so I'd like to understand how it came to be that way and what family and friends can do to help build similar communities for their loved ones.

Michael Gordon, PhD: That's a good question. I had thought a lot about that and observed a lot. I interviewed a lot of his friends and workmates, et cetera, managers at his store when he worked for years as a bagger at Publix, at the grocery stores down there. And I think, one, it has to do a lot with David himself. David's just a very delightful, sweet, loving guy, who has no agenda in talking to you, isn't trying to outdo you in any way. He just wants to be with you and do something. People alight to him because he's guileless. He really just is a happy fellow and attracts people's attention and appreciates it.

The other thing about David is that while people are very thoughtful about him, he's very thoughtful about others. He calls everybody on their birthdays, sometimes half-birthdays and quarter-birthdays. He will do anything for you. He is just fun to be with, but also caring. He calls people. He connects with people. If you're sick and in the hospital, he's there, maybe before your family is, and so he has endeared himself, because he is who he is.

Then as far as the community goes, I think that more than anything else, it's just that people can find there are people out there, and many people out there, you don't read about them on the news too much, who are just good people, who want to help, who realize that being kind has benefits both for the person you're being kind to, but also to yourself.

It just brings tears to my eyes every time I go down there, every time I talk. These are folks who just are devoted to him. They love him, and they act accordingly. And if you ask them why, they say, "Well, because he's David, because we love him."

He's inspirational to people. I know that because I have it right on tape. People say, "You know, I'm kind of a depressive guy, have trouble getting out of bed. And then I think about David and what he'll do, and he'll do anything. And he gets his butt out of bed, and why shouldn't I?"

So I think it's a combination of David being somebody you want to help. But I also think people like to be, many people like to be, helpful if they can get past their discomfort about it. I think David makes it easy to be helpful to somebody who's atypical. He is perfectly delightful to talk to and is friendly.

A lot of people aren't like David, and their emotional IQ is lower than his, even though their overall IQ may be higher. So it's a little more challenging for others to engage them. David's easy to engage, and so I think that helps a lot, because I do think people enjoy getting outside of their own experience a bit. Maybe not everybody, but certainly a lot of people. And I think if you were to stop and ask folks, more than you may realize, people really do look out to be good to others if they can be. And I think kindness has its benefits, and I think people realize that.

Host Amber Smith: Has he ever been taken advantage of?

Michael Gordon, PhD: Not in any major way. Much to my surprise, he's had little instance over the years where people, he's been walking, and people shout out stuff. He's had people get frustrated with him on his job, although for the most part, he's iconic in his way of carrying forth his duties.

Maybe once, we think, there was a plumber who charged him too much. But, as you'll read in the book, one of the owners of a jewelry store right outside where he lives, when asked the question, "Should we be worrying about David and people taking advantage of him?" she said, right out, "They wouldn't dare," and says, "If somebody took advantage of your brother, that'd be the end of him before the day was over."

He says everybody looks after him and nobody would dare mess with him because there are too many people who would look to change that.

Host Amber Smith: You talked about how important religious activities are in David's life.

Do you think that religious institutions are doing enough to meet the spiritual needs of people with disabilities?

Michael Gordon, PhD: I don't want to speak for all the religions. I have a funny feeling that most religions do not do all that they could do to include and look after the needs and the spiritual needs of people who are special.

I've always, frankly, been incredibly impressed by the Catholic religion, because they just start out looking to help those most in need. And in my clinical work, Catholic Charities was always the agency that would step up and say, "Yeah, we'll take care of that," even though everybody else was thinking of every way not to take a case which was very complicated and had parents who were having drug issues, et cetera. Catholic Charities was there.

But within my religion, within Judaism, I think we could do a lot more. And I think a lot of people feel that we could do a lot more. Even in the literature for our religion and many others, having something different about you wasn't a good thing. You couldn't get into the temple and be a high priest, et cetera, if you had some sort of mark or whatever. And it seemed as if, if you had some sort of disability, it was a sign that God was displeased, et cetera. So I'm not sure that the Jewish religion, per se, has done all it could do.

If you read articles on this, and there are just a few, though it's not just Judaism, it's just most other religions. The Catholics, again, have had a special set of initiatives to look into what could be done. I think there are synagogues that help, but certainly the congregants are amazing, so I don't want to say anything that makes it seem that the congregants themselves don't do what needs to be done. But if you ask rabbis, "When's the last time you gave a sermon about inclusion and involving people?" most of them will say zero to one over the course of their career. The only rabbi I talked to who said he gave two talks over 20 years has two kids with special needs. So I think that there could be a lot more done to go beyond just access, just physical access, to thinking about: "All right, what would help folks and what would getting them involved and how can we actually benefit our community by focusing more, not just on the high achievers, but also those who are coming for other reasons?"

Host Amber Smith: Well, what has been David's experience with medical providers?

Michael Gordon, PhD: Well, that's a mixed picture, as you might imagine. Generally good. I don't want to indicate that people haven't attended to him as they should medically. What's very, very obvious though, and I write about this at some length, and carefully, I hope, is that it's very easy for a provider to assume that various symptoms are associated with the person's problem as opposed to something not related to that problem.

So for example, when I was an intern, I had a case that I was called to the ED (emergency department) because this young girl who had developmental disabilities was carrying on and misbehaving at school at a much higher level than before. The emergency room doctor and a psychiatrist were called. Both said that this must have to do with her behavioral problems as part of her disabilities. And I came in, and I looked, and she looked to me, she was pretty uncomfortable physically. She was grabbing her stomach, and it turns out, long and the short of it is, that she had appendicitis, and she was carrying on.

So that phenomenon is called "diagnostic overshadowing." And that's a situation where people are very quick to assume that, for example, a woman who is intellectually limited wouldn't necessarily, wouldn't ever, have sexual relations, so you don't have to worry about contraception or to look into other physical issues that could be associated with that. And there are a number of studies showing that people with disabilities don't get the care they should get.

No 2, what's very obvious is that physicians oftentimes don't stop and make sure what they're saying is something that's understandable to the person. Now, I think a lot of physicians would tell you, and nurses and others, that that just doesn't go for a David. That can be, in other circumstances, the extent to which people would comply with the prescriptions that they get, it's extraordinarily low, in many instances, because it turns out people don't understand the instructions. And that's very much the case for David. David goes for his appointment with his diabetologist; diabetologist says, "You do X, Y, Z this, do this, do this if you have this carbohydrate or not."

I've sat in on those appointments, and she walks out the room, and I say, "Hold on, Doctor. David, what did Doctor just tell you?"

He says, "I have no idea." And I think that, in many instances, physicians would do well, or providers of one kind or another would do well, before walking out the room, to say, "All right, let me make sure I understand you get this, you understand what you do."

I'm not sure that happens to the extent that it should. And it doesn't surprise me, where that compliance with medical instruction and procedure is so low, because just a little bit of check-in -- "Do you understand what we're talking about? Do you understand what this means? Do you understand when, now tell me, when should you take this pill?" That should happen, and it doesn't as much as it should, I feel. And so I think that's part of the lesson from working with David.

Host Amber Smith: Well, I'd like to ask you to answer one of the questions that you ask in the book, and that is how do you balance autonomy and safety? You've had to do that with David from afar, right?

Michael Gordon, PhD: Well, yeah, from afar. It's not just with David, it's with anybody with special needs. We've had family members with dementia that obviously has progressed, and that's the main question, "How much should we keep Mom or Dad in his apartment alone? And, what do we do if he or she violently opposes any limitations on their autonomy?"

This is a huge challenge for all of us and particularly my age: dealing with people who are not so impaired, obviously, that they need to be in assisted living, say, but are pretty impaired and may not be as safe as they should be.

From my point of view, it's safety first, if, at the end of the day, I would rather get yelled at for moving a parent into a facility than get a call hearing that that parent had fallen or gotten hurt or wandered off or anything like that. And I think it's very hard, and I see this all the time with my own, family, but (also) with friends, where you have to keep remembering that at the end of the day, it's that the person is safe that's most important. Now, that doesn't mean that you go overboard in that, but if you're at a point where you're thinking, "Where should we go with this?" I think the main question is, "Well, what's the safest?" And reasonably safe. None of us are always safe, but reasonably safe, and I think that's what drives the decisions.

Host Amber Smith: What does David think about the book? Has he read it?

Michael Gordon, PhD: Oh, he loves it. He's read little parts of it. I've read pieces to him over the years.

But he thinks that this is pretty much what he deserves, because he is such a popular guy. What I mean by that is, he thinks this is great. He's not particularly, I don't know, fazed or excited by people enjoying him and making a big deal about him. He just thinks that he knows that people like him. He wants people to like him, and he likes them, and he just thinks this is just another piece of that whole process. So he's a big fan, and I've given him cards to hand out to his various friends to buy the book. So he walks up to people and he says, "This book's about me. My brother wrote it. You should buy it and read it." He's become the Florida distributor (chuckles).

Host Amber Smith: Well, Dr. Gordon, thank you so much for making time to tell us about this book.

Michael Gordon, PhD: It's my pleasure. Thank you for inviting me.

Host Amber Smith: My guest has been Dr. Michael Gordon, a clinical psychologist and professor emeritus from Upstate's department of psychiatry and behavioral sciences. His book is called "The Book of David: On Caring for Siblings With Special Needs."

"The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe, with sound engineering by Bill Broeckel and graphic design by Dan Cameron.

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