From Patient to Chief: Dr. Michael Alexander

LINDSEY WELLS, HOST: From KVMR and in partnership with FREED, this is Disability Rap. 

DR. MICHAEL ALEXANDER: There certainly are a lot more opportunities and a lot more insight into the value that people with disabilities bring to their patients and their ability to relate to who they're caring for. 

WELLS: Today, Dr. Michael Alexander, on his career in medicine as someone with a significant physical disability. 

DR. ALEXANDER: We should spend more time getting to know the person for whom we provide medical care, learn more about them than we need to know about the disease that afflicts them. That's been my goal, to help the medical community adjust to and look out for people with disabilities and impairments. 

WELLS: That's all coming up on Disability Rap. Stay tuned.  

CARL SIGMOND, HOST: Welcome to Disability Rap. I’m Carl Sigmond with Lindsey Wells.   

WELLS: Today, we're joined by Dr. Michael Alexander, retired Chief of Rehabilitation Services at the A.I. duPont Hospital for Children in Wilmington, Delaware. 

Dr. Alexander has a long history at duPont, starting when he first set foot in the hospital as a patient at age 12 after contracting polio. As a teenager, he spent summers as an inpatient at the duPont Hospital, forming relationships and community with other children with disabilities and with the doctors and nurses working there. 

With encouragement from the lead physician at duPont, he decided to go to medical school at the University of Virginia and enter the emerging field of physical medicine and rehabilitation. After practicing in Ohio and Pennsylvania, Dr. Alexander returned to duPont, now the Nemours Children's Hospital, as the Chief of Rehabilitative Medicine in 1986. He retired in 2013. 

Dr. Alexander is a leader in the field of pediatric rehabilitation. While at duPont Hospital, he pioneered family-centered care, bringing families of children with disabilities into the discussions and planning of their medical care and rehab. He facilitated the transition at duPont from mostly providing inpatient care to focusing on outpatients, providing children with disabilities and diseases the care and supports they need to live at home and participate fully in their community. 

SIGMOND: Well, Dr. Alexander, welcome to Disability Rap. It is an honor to have you with us. And before we begin, I just want to note for our listeners that you were actually my pediatric rehab doctor for fourteen years at the AI duPont Hospital for Children in Wilmington. It is great to see you again, and thank you for coming on our show.   

I actually want to begin with when you were in high school. You were at duPont with a group of other disabled children, and you really formed a community with them around your disabilities that I don't know if that would happen today in the same way. So, I want to begin by asking you to reflect on that experience and how it prepared you for your career.   

DR. ALEXANDER: Being a patient at the duPont Institute back in the '60s, and '70s, and basically into early '80s, just before you started, probably, was different. You were admitted, you were put on the ward, they provided your clothing for you. You were in a big room, a ward, open room with 18 to 20 people in it around the walls. You were not going to see your parents, but once a month. It was called Visiting Sunday. The only other time you saw your parents was the day after you had surgery. If you were there for eight months and had one operation, you saw your parents nine times in eight months. 

All the girls were on one side of the ward, and the boys were on a different ward on the other side of the hospital. There was a courtyard between the two wards, and it was downhill from the boy's ward to the girl's ward. If you kicked the brakes off of your bed and one of the other boys gave you the right shove, you could play shuffle and have your bed wind up closer to where the girls were. 

It became a community because you tended to look out for each other, particularly looking out for the younger boys and girls. The older kids were busy in intrigue of how to interact, and catch up, and meet up with girls. It was not a community of disabled issues. It was, hopefully, a hotbed of adolescent and pre-adolescent behaviors. We spent much of our time figuring out how you could get a particular girl to be interested in you. There were ways to smuggle notes over to the girls and from the girls back to the boys. It was fun to trick the nurses and make things happen that made their lives interesting, let's say. 

WELLS: Thank you. In another interview, you said that when you were growing up, you wanted to be a teacher, not a doctor, and that it was the head doctor at duPont who encouraged you to pursue a career in medicine. Had you ever considered becoming a doctor before? As someone with polio, what were the obstacles you faced at the time going through med school, your residency, et cetera? 

DR. ALEXANDER: I had thought about being a doctor when I was younger, and my dad had convinced me that, physically, I wasn't going to be able to do it. Then I thought perhaps I'd want to be a teacher. I belonged to FTA, Future Teachers of America when I was in high school and was interested in that. I was talking to him and I told him. He said, "What do you want to do when you graduate?" and I said, "I think I want to be a doctor." He looked at me and he said, "You think? Don't you know what you really want to do?" I said, "I really want to be a doctor," and he said, "Well, then you can be. Why are you thinking this way?" 

At the time, I was a freshman in college, and he arranged for me to spend that summer as a research assistant on a project he was working on and on a genetics project that Dr. Cal was working on. During the day, though, I was to follow his residents around, go to the OR, go to the clinics, help put casts on, and basically live that life. 

Saturdays, I had to go to X-ray rounds. It was very much like being a junior physician for a while there. I did that and I realized I could do it. 

Then when I applied to medical school, I was lucky in that at the University of Virginia where I went to school, the provost for medical affairs and the dean of students for the school of medicine had both had polio. One had had polio when he was a young man, a teenager, and the other one had it while he was an intern. He had gone all the way through his training and then had polio, so they had a different attitude towards me. 

I have to admit, the other thing that helped is I had a letter of recommendation from Dr. Shands who was the first medical director at duPont, who had a chair, an endowed chair at the University of Virginia. To have a letter from him was very helpful when I got to go meet with the people that were doing the admission. They were interested in me, I was interested in them. 

Interestingly, a week later, before I had got my letter from them, I was at Medical College of Virginia where I had a very nasty and rude individual who interviewed me and pointed out I had polio, and why should they waste their money to train me to be a doctor when I might not practice as long as other graduates? 

They would confront you with that, and then they were looking for you to have the spine to speak back to them. That would have been hard. Fortunately, for me, I had my letter from Virginia, had just arrived that morning when I went down. I politely, in a more tactful way, pointed out to them that they were going to miss out on a really great doctor if they didn't take me and to hell with you. I don't think I would have ever been that brave if I hadn't already heard from Charlottesville that I was accepted. I would've pushed the window a little bit though. 

I had other friends who had other medical conditions that interviewed that same year there in Richmond and they were all treated rudely. One young lady with diabetes and another young man that was very mild cerebral palsy, hardly affected him at all, and he was just devastated that they were so rude and callous towards him. 

WELLS: How is the medical profession more inclusive of people with disabilities working in the field now than when you started and what can the profession do better to be more inclusive and welcoming of people with disabilities? 

DR. ALEXANDER: Well, there certainly are a lot more opportunities and a lot more insight into the value that people with disabilities bring to their patients and their ability to relate to who they're caring for. It's just not physicians that want to do rehab, it's pediatricians, and OB-GYNs, and it has become easier. I counseled residents and students that were blind, that were deaf, that had mobility impairments, quadriplegic. Over the years, I trained a couple doctors that were fairly significantly physically impaired, but mentally were sharp as axe. We spent a lot of time teaching them how to do a low-touch neurologic exam and how to get as much information watching somebody as touching them. 

My expectation was always, though, that they had to figure out one way or the other to find out what they needed to know and give them the opportunity to use that person's skills and observations to enhance what they were doing.  

SIGMOND: Great. And this leads into my next question. I actually want to bring up two memories of you when I was a patient of yours, and they both have to do with ableism. I think you're okay if I say that when you worked with me, you used a scooter, and that was all I knew: Dr. A was using a scooter. So, I remember one time - and this was when I was quite young - you gave me a physical exam on the table. And I just remember being amazed at how strong you were, knowing that you were using a scooter. So, that was my own ableism there.   

And then the second memory - I don't know what year it was - but for some reason my mom and I attended a lecture of yours or an event where you were receiving an award, and all I remember was that you got out of your scooter and walked up to the podium to give the talk or accept that award. And again, that was so eye opening for me as a young kid to see that. And so, I'm sure my experiences are not unique. So, can you talk a bit about your experience with ableism, and then being a role model in that?   

DR. ALEXANDER: There were many interesting times when that happened to me. I can remember working in an emergency room. I was doing a call there and a man came in who I don't even know what his problem was anymore, but he said he didn't want to see a crippled doctor. 

I was the doctor that was there to see people that night, and the nurse said, "What are you going to do? He doesn't want to see you." I said, "Well, I guess you'll have to call some other doctor and tell them that this guy doesn't want to see me because I'm cripple doctor." She said, "Okay." Then she proceeded to call everybody that was working that night and everybody says, "Well, if Dr. Alexander's not good enough for him, then none of us are good enough for him either." The poor guy signed himself out against medical advice and took off. 

Another example of, I'd call it patronizing ableism, is when we moved to Virginia from Long Island, in the eighth grade, I had been in an honors English class, but in the ninth grade, somebody decided that I should have all my classes on the first floor because I was crippled. All my classes were lined up, and the only English class they had on the first floor for freshmen was remedial English. For the ninth grade, I was in with a bunch of really nice, likable people, but they were kids that were behind in reading for anything from neurologic issues to truancy and behavioral issues. 

It was interesting for me because, one thing, I learned how to hot-wire a car because I was sitting there with plenty of time on my hands. I remember one girl was having trouble, and I spent some time teaching her, but I did waste a year of English training in school. To this day, I still hate editing papers because I don't think I see everything I should, because I missed out on that. 

When I heard my honors geology course was on the second floor, nobody told me I couldn't go up the steps, so I just went up the steps to the lab. I was taking my honors science course on the second floor, but somebody else had thought somewhere else that I had to be on the first floor to take remedial English because I couldn't handle the steps. 

The other interesting thing was how my wife reacted once. We were at a really nice restaurant in Georgetown outside of Washington DC there. The waiter came in and asked my wife what she wanted and she told him what she wanted. Then he looked at her and he said, "Well, what does he want?" My wife looked at him and gave him a grin and said, "You better ask him because he's paying for the dinner, and he'll be paying your tip." 

That goes on around there and I guess part of my philosophy in teaching early on was don't ever be intimidated by a question. 

To some extent, when people would cross those bounds, I was able to tell them, "If you don't interact with me, you're going to miss out on one of the best rehab doctors that will ever come along." 

Society isn't quite in it for you. It is true that any number of people had to work a lot harder to get through what they did, but then it's interesting how some people use it to compensate. 

Judy Collins, famous folk singer, had polio, and she had respiratory weakness. She said she liked singing and her nurse or physical therapist said, "Well, that's great. Not only will you be making pretty music, but it'll be good for your lungs." She turned that cord, but some people just don't have the same quality parent support, mother advocate, or father advocate. They get beat down, compartmentalized, and people don't do it. 

I'll tell you one other quick story if I have time here. When I was at Ohio State, I was given a group of first-year medical students, and we were teaching them the romance of medicine. That was what we were supposed to do. I was working at a adult CP center there in Columbus, Ohio, and I had a couple of really neat adults who had-- One girl had spina bifida, one girl had cerebral palsy. I'm not sure what the other two did, but they were very open and very frank. The one girl was very involved. She still lived with her mother. I had brought the medical students in and I told them I wanted them to do a biography of their patients. I assigned each adult to one medical student and the medical student said, "I don't know how to do a biography." I said, "Don't give me that crap. You graduated from college. You know what a biography is. I'm going to come back in two hours, and you're going to tell me the story of Lindsey or Carl," whoever they were doing. 

I came back at the end of the hour, and they had been talking, and what I had hoped would happen was really good. They had really bonded with the individuals that they were talking to and understood more about what was going on. Then I had a group discussion, but my group discussion was about sexuality of disabled adults. I turned to the one girl that had trouble talking and had cerebral palsy. I asked her about what happened the first time your mother caught you necking with your boyfriend? She told me, "Oh, it's terrible. She yelled at me, she shamed me. She made the boy go home." I said, "Jeez, how old are you now?" and she said, "35." I knew the answer to the question already, because I was wanting to watch the medical student's reaction. She says, "Oh, well, that was two years ago." I said, "You were 33, you got caught making out with your boyfriend and your mother climbed all over you?" and she said, "Yes, she did." I said, "How'd that work out?" She says, "Well, when she got over it, it was okay." 

Then I talked to the women. I asked both of them, "Has anybody ever talked to you about birth control?" and she said, "No." I said, "Have you ever had a gynecologic exam?" and they said, "No." Since this was an adult CP center and we had adjustable height exam tables, I immediately went out and contacted the GYN residency program and asked them if they'd send over a doctor to let these poor ladies get some reasonable care. 

You have to really be open to the idea that just because you have an impairment that may disable you in one parameter, it certainly doesn't really cut out the fact that really you want to be writing notes to the girls and finding out what's going on with other things, and that you have political opinions and issues. 

WELLS: How have views within the medical profession towards people with disabilities and inclusivity changed since your retirement 10 years ago? 

DR. ALEXANDER: Well, we're much more accepting of them in the training programs. We spend a lot more time trying to make them understand how society has viewed people with disabilities. I do a whole hour lecture for medical students and residents still, even retired all these years, where we talk about how disabled children and the disabled in general have been treated through society. Talk a little bit about some of the issues able-bodied people have with being confronted by somebody who's different than they are, we talk about how the-- It was the Greeks that began to think, really, if they weren't going to be productive as a human being, it was better to kill you.  

We talked about the Romans, we talked about some of the really absurd phases this country went through. We had a period of time where we had what were called the ugly laws. People with disabilities were not supposed to be out in public on the streets because they didn't want to look at somebody that was disabled looking. Not only was that you're not allowed on the street, it could be a $50 fine. This was in 1800. I'll remind you that $50 was a lot of money in 1800. We're not talking about a little slap on the wrist. This was weeks or more income that you could forfeit for being out there and disabled. 

We went through a very beneficent mode where we were putting all these people away in institutions. A.I. duPont Institute is you started as a patient at. Well, that referred to the fact that for years before, either you or I were there as patients. They came there and they lived there for months and years, and they were helped to be out of the real world and not be cared for, and don't let them be picked on by society. 

We talked about, in this course, the Nazis really perfected a lot of their techniques they used to kill the Jews on their disabled population first. They wiped out a whole generation of disabled children in the '30s and a whole generation of disabled adults before they opened a single death camp, as a matter of fact. 

I want the residents to understand that's been going on so that they can be attentive to the current trends that are out there again. A big concern for me for the disabled population is the fact that assisted deaths or suicide, or whatever you want to call it, is being turned back to tell people with disabilities that, "Maybe the best thing you could do for your family is to kill yourself, make this stress go away." Unfortunately, some people believe that, that that in fact would be the right thing to do. 

There's a fellow named Hawkins who's a well-respected British ethicist who, just a few years ago, told a mother who asked him, "If I know my baby's going to have spina bifida, what should I do?" and he gave her two pieces of advice. His first advice was that, "Well, do it. Kill it. Get rid of it." Then he added though, and this is what worries me, he said, "It's the ethical thing to do." I want the generation of doctors to know what's going on. I think if that's ableism, then that's at its nasty extreme. 

In Europe, and Belgium, and the Netherlands, they're still euthanizing children with disabilities if the family wants to do that. There have been a few Americans that have taken their own children over to Belgium to have that done for them. 

They need to understand the ethics of it. I finished up the lecture with reminding them that they took an oath and that oath didn't say anything about offing your patients, but it's rather was to make sure that you looked out for your patients. 

There's a very famous Canadian physician, William Osler, who said that we should spend more time getting to know the person for whom we provide medical care, learn more about them than we need to know about the disease that afflicts them. I think that's been my goal, to help the medical community adjust and look out for people with disabilities and impairments. 

SIGMOND: Thank you, Dr. A. What a grim history. And listening to you, I was reflecting that even in the Independent Living Movement - where we work - they don't really talk about the historical euthanasia of people with disabilities. Horrifying.  

We are almost out of time, but I did want to ask: how is retirement? And do I remember that you were part of a jazz band, or am I making that up?   

DR. ALEXANDER: No, it wasn't a jazz band, but I sing with the New Ark Chorale which is a choral group. I've done that for years. In fact, we're doing our Christmas concert on Saturday. I cantor at church, which means I lead the music and do the Psalm and the acclamation in the Catholic church. You're standing up there in front and leading that, while there may or may not be a choir somewhere else in the church. 

I still teach this pediatric rehab course once a week. I try to make sure every resident and student gets this hour lecture on disabled children in society. I'm active in the state medical society and on the church's finance board. My real joy is I'm an assistant babysitter to two grandchildren three days a week. We have Nikki and Lilly. I think my daughter's finally through making babies, but since I retired, I've gotten to go through four sets of babies, watching them from when they were less than a year old up until they started regular school. I have a lot going on. 

Probably what I resent the most is that Medicare is pretty crappy when it comes to meeting some of the needs you have as a disabled adult. I now use a power wheelchair and I can't believe how long it's taking to get a new battery. Quite honestly, I could afford a new battery. I could go out and buy one, but I'm just doing the experiment to see how long they drag this out. It's incredible. They come out, they say, "Yes, your battery's not working. It's not holding the charge." I said, "Well, when are you going to replace it?" "First we send 

it out for a bid, and then we have to get approval. Then we have to get your doctor to sign it." Then you call up and they say, "Well, your doctor hasn't signed it." I say, "Well, why can't you let me know that my doctor hasn't signed it, and I'll call him up and I'll light a fire under him? Hell, while we're at it, I'm a retired doctor. Why can't I just write my own prescription?" They said, "Oh, no, you can't do that. You're not allowed to write your own prescriptions." I said, "No, that's only for narcotics that we're not allowed to write our own prescriptions." "Well, no, we can't let you do that." I rant and rave about that, but it's a lot of issues, transportation systems. You guys are lucky you're in California. It really sucks back east and at this time of year if you were waiting for something. 

Again, I earned enough and I was frugal enough to plan for this that I have backups, luxuries that other people don't have. I picked up a spare power wheelchair just so that I wouldn't be at the mercy of some clerk at the company. I bought my own accessible van, but it's really tough to do a lot of this stuff on your own. 

Medicare still will not approve a power wheelchair if you only need it really to get out of your house and go places. They want you to have to need it in the house before they want to fund it. You could say, "Well, gee, I'd like to be able to go to church, go to the library, go to the 7-Eleven." "No, you don't need to do that, but we'll get you one if you need it to get from your bed to your toilet." It's still a lot of stuff that needs to be worked on, and I want the residents to understand that, too. Disability parking. It's just a crazy world. I have a ramp that lets down out of my car and have a sign on the side of the car that says, "Please, don't block me in. Leave me that hash mark area there to put my ramp down." People routinely do it. 

The last time it happened, I was waiting for the guy to come and it was down to two of us there. Everybody else had gone home, and here's this idiot's car still blocking mine. Now, again, if it had been cold or something, I could have solved it differently. I've delighted in having the police come and move my car for me, and while they're there, write them a ticket. I really wanted to see who this idiot was, but I'll never know. 

SIGMOND: Well, Dr. A, thank you so much. 

DR. ALEXANDER: My pleasure. You're welcome. 

WELLS: That was Dr. Michael Alexander, retired Chief of Rehabilitation Services at the Nemours Children's Hospital in Wilmington, Delaware.  

And that does it for the show. Disability Rap is produced and edited by Carl Sigmond and Courtney Williams. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap Podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We are brought to you by KVMR in partnership with FREED, and we're distributed by PRX, the Public Radio Exchange. I'm Lindsey Wells with Carl Sigmond for another edition of Disability Rap.