Ep 134 Revisiting Rosemary Kennedy: Learning from her story to help better support those in the present . Part 2

This  is the second episode of a series on Rosemary Kennedy. Using the biography as a guide to time travel into Rosemary's life, Dr Lenz uses a modern lens to reflect and support those living with similar challenges. It explores Rosemary's disabilities, such as autism spectrum disorder and ADHD, and the challenges faced by her and the Kennedy family in seeking help for her when our present perspectives didn't exist. The episode discusses the influence of the eugenics movement during the 19th and early 20th centuries, which categorized certain individuals, including the intellectually and physically disabled, as defects. It covers the advocacy of prominent figures like Teddy Roosevelt and wealthy industrialists who supported eugenics. It highlights the hardships faced by Rosemary and her family due to societal stigmatization and the pursuit of a potential "cure."Dr. Lenz describes Rosemary's experiences at various boarding schools, the struggles she faced with academics, and the attempts made to address her intellectual and emotional challenges. He touches on the Kennedy family's privileged lifestyle during the Depression era and their efforts to find medical treatments, including endocrine therapies. He also mentions Rosemary's adjustment to new surroundings, such as her trip to Europe and her presentation at the British debutante season. Lastly, he emphasizes the importance of understanding, learning, and growing from the mistakes and misunderstandings of  the past to better appreciate and support those living with struggles in the present.

The fibromyalgia starter pack  categorizes the episodes in a way that is more accessible for those new to fibromyalgia.

Transcript

Speaker 1: 0:48

This is the last part of the series on Rosemary Kennedy. We've been discussing her story so we can learn and grow in our understanding of autism and ADHD from a historical perspective, and it's also important because when we hear her narrative, many who are struggling with fibromyalgia and other related illnesses may also be living with one of these neurodivergent conditions like autism and ADHD. Up until this point we've had kind of a sad story of Rosemary's life. In this final episode we are going to hear about such a positive experience, but unfortunately tragedy hits as we continue the conversation with Kate Clifford Larson, author of the bestselling book Rosemary, the Hidden Kennedy Daughter, if you haven't gotten a chance to listen to the first two episodes, please listen to those before you start this week's episode. Remember that while I am a doctor, I am not your doctor. All signs and symptoms should be discussed with your own individual physician. We're now on to this week's episode. Rosemary went to the new school that used the Montessori method and reported to her parents that she was extremely busy working on an albumeth school and was finding it an awful lot of work. She was taking a location and contemplating her next set of courses. She had been working hard for a diploma which she believed would qualify her to be a kindergarten school teacher. The entire school community probably shared Rosemary's acceptance of Dr Montessori's visit to the school. The Montessori method of education emphasizes hands-on individual learning strategies and techniques of teaching in multi-language, multi-age group settings. Children of varying intellectual abilities and levels work side by side, learning at their own pace in open classrooms. Born in 1870, maria Montessori was a precocious child whose well-educated parents encouraged her sharp mind. She was awarded a medical degree in 1896, becoming one of Italy's first female doctors. Her medical training had taken her into the slums and orphanages of Rome, where she witnessed the ravaging effects of poverty and the lack of education on the city's most vulnerable children. She became particularly interested in disabled children with intellectual disabilities and emotional problems, destined to live in empty, lifeless rooms. She opened a daycare setting in the slums through which she developed theories about childhood development and learning. Montessori requires that teachers and caregivers speak to the children with respect and care, recognizing that, despite their disability's ill health, neglect and poverty, these children had an innate desire to learn. Montessori believed that if children were exposed to a safe experiential learning environment, as opposed to a structured classroom with access to specific learning materials and supplies. If supervised by a gentle and attentive teacher, they would become self-motivated to learn. She discovered that in this environment, older children readily worked with younger children, helping them learn from and cooperate. Montessori advocated teaching practical skills like cooking, carpentry and domestic arts as an integrated part of learning Classical education and literature, science and math. To her surprise, teenagers seemed to benefit from this approach the most. It built confidence in the students and became less resistant to traditional educational goals. Through this method, each child would reach their potential, regardless of age and intellectual ability. The Montessori method arrived in the United States just a few years before Rosemary's birth in 1915, and it would be years before it was widely accepted. Although Rosemary might have benefited from such instruction as a young child, she would only be exposed to it once she was enrolled at the Assumption School in London For the Assumption Sisters. Montessori's ideas on good and evil also fit with their Catholic theology. At Belmont House, rosemary would be constantly attended by at least one aid or caretaker, and sometimes two Weekly transitions between school and home, with weekends spent at the embassy, including. The demands of numerous social functions and the high-level activity typical of the Kennedy family had caused exceptional stress for her, because her parents constantly controlled her. Now less would be asked of her, more could be met and she could feel more relaxed. Dorothy was her constant companion and assisted her with her studies. Social engagements and any excursions away from the school In busy days kept Rosemary content and happy. But here too she would lose her temper and lash out at her new friends, nuns, teachers and even younger students. The Assumption Sisters' letters to Joe and Rose suggest that they were aware of Rosemary's disabilities, consistently remarking on the 21-year-old's marked improvement in her studies and attitudes since her arrival. Still, the sisters also reported that on occasion she needed to be reminded not to be so fierce in front of the other children. She and her brothers also worried that Rosemary might accidentally do something dangerous while mother was occupied with some unavoided official function. Would she get confused taking a bus and get lost among London's intricate streets? Would somebody attack her? Could she protect herself if she was out of the eye of the governess? Mary Moore, who worked at the Bellmont House where she was getting the Montessori teaching, wrote that she had never seen such a change in her life after Rosemary had just spent a few weeks at the Bellmont House. The breathtaking pastoral landscapes of Bellmont's House, extensive estate buildings and Dorothy Gibbs' devotion to her Montessori educational methods made Rosemary's day-to-day life brighter and happier. A passionate and innovative educator, mother Isabel seemed to hold a magical key to learning. She believed that the Montessori method built confidence, not undermined by the wrong set of competition which often promotes envy and feelings of inferiority. He felt that it would be a disservice to return to the United States and it would be better for her to stay there. She is no bother when she is away from the other children. She gets along very well with Mary Moore and they have lots of fun together. Mother Isabel said that the calm and sameness of her life is just what she needs. That's just what she needs is so interesting because again that fits so much with the idea that she was on the autism spectrum and that need for sameness she continues. I'm so glad Mr Kennedy gave you good news of our dear Rosemary. He is pleased with her. We two are very satisfied with the rest of the term. Rosemary is very well, obviously happy and she has made much progress in many ways. Mary was now completing tasks. She also has a good time reading to the children. She prepares and gives them lunch in the middle of the morning and has many other occupations of a domestic kind which she is able to do alone, not the least of which is putting away the dining room things, china and silverware in the cupboard. Mother Isabel knew about Rosemary's anxiety over her parents' praise. She thinks of you immensely, especially loves you in heaps and loves hearing from you to get your approval. She was also worried about her faults and asked me one day to tell her what faults she had as false spoil people. This struck me, showing me how much she thinks things out. We have had more talks. She has been trying to harder to think of what pleases others before what pleases herself, and to be nice to people even when she thinks they are not nice to her. She comes to me when anything upsets her and we have it out along these lines. The Kennedys have been blessed with their near perfect healing. We continue with picking up in the interview with Kate talking about Rose's next stage in life.

Speaker 2: 9:10

And so she suffered in many ways. In other ways, though, and they were in ink when they eventually moved to England and she entered a Montessori school situation, and the mother superior of the school had been trained by Maria Montessori. Those methods those Montessori methods that the mother superior used with Rosemary helped Rosemary with her confidence, and she blossomed, so there were ways to help her, but it was just by chance that she ended up with this particular Catholic nun in this Catholic school that taught Montessori method, and so it was a terrible time in our world where they just didn't know how to help people with disabilities, and thank goodness, things have changed since then.

Speaker 1: 9:59

When you look back at her history there were some good things, like Rose recognized was going against the grain and saying if I put her in an institution with other people who are struggling it's not going to help her. Have she thought she wouldn't potentially get better because she's?

Speaker 2: 10:19

not surrounded by people or reach her potential. You're right.

Speaker 1: 10:22

Yeah, reach her potential and a lot of these institutions were really sad. Now, when we look back, it's before the one flew over the cuckoo's nest. They were treated as subclass human. There are a lot of terrible things that were going on in these places and almost checked out Like they weren't human or they were subhuman and treated that way and almost cast away. When you look at this from a movie standpoint, if you were trying to create a script for a movie, you'd end it in London with Mother Superior. And then she continues to take care of these children, doing everyday things, happy, flourishing. Everyday things going well. They finally found the perfect spot for what? Now we know the type of people who have an autistic style brain. And again, going on conjecture, we only have to go back in time. But based on a lot of these descriptions like that's such a supportive environment and, unfortunately, why did that stop?

Speaker 2: 11:36

Because of World War II and the fears of bombing by Germans in London and outside of London, which did happen. So Joe and Rose brought Rosemary back in the spring of 1941 and 1940, excuse me and that began the spiral downward for Rosemary and driving Joe to make that fateful decision to have her lobotomized.

Speaker 1: 12:02

And one of the really nice things, where she was outside of London in kind of a pastoral romantic kind of setting, romantic in the I don't know 18th century or whatever 19th century romantic, there was routine, there was consistency, there was love. One of the parts of Rosemary is that she was a very empathic and sensitive person and she just thrived on praise and so much wanted to please her dad and her mom. Yet there was that back and forth of wanting her to be more and she wanted so hard, I think, to do. When you look at a lot of the things as a pediatrician and internists, looking through the lens, you hear she just tried so hard and she wasn't leaving up to her potential and she would get distracted and couldn't concentrate in all of these things. And now we know that a large number of people who have around the spectrum also have ADHD. So you throw that in and there's a not clinical term but autistic burnout, that when she gets back to the states that quote regression. We learned that a lot of that are stress behaviors, when somebody has had their routine and things change. And when you talk about a high stress, whether she could fully contemplate what was happening with the war, but on both being pulled from the perfect place that she was at ever maybe in her life for thriving, and then a war and they could never match what that mother superior was in the states. They never had that same kind of I think understanding and probably you can only read what was said. I think one of the places that she went to they had to pay quote to have her do what they were doing in London, but I don't think the people working there were likely the same as what they were doing in London. It sounded on, when you read, similar but it's the probably the unspoken, unwritten relationships that she had with people that were not the same.

Speaker 2: 14:18

And also and the people weren't as patient they had different expectations of Rosemary when they met her, because Joe and Rose didn't tell people ahead of time what to expect and so they were always blindsided. And then she had this incredible relationship and learning, sensitive learning environment with mother Eugenie in London. And then she comes to the United States and they put her in an assumption school because mother Eugenie was an assumption sister and they thought all the assumption sisters were like that. And of course they weren't. They hadn't all been trained by Maria Montessori and they didn't have the patients with Rosemary that the mother superior did. So that was a tragic mistake and not recognizing that particular nun had those gifts. And interestingly I'd love to say this too after the war that nun came to the United States and worked in a Montessori school in Connecticut and I have a picture in my book of the sister with a group of young third graders in line at school that they're going to mass in the morning or something and they've got their hands praying. And this woman reached out to me from Los Angeles and she said I'm the little girl in the front of that line and she had dyslexia and she said that particular nun helped her learn how to read and write because she used the Montessori method and she was very patient with her. And now that woman teaches special needs students in the city of Los Angeles.

Speaker 1: 15:57

Wow.

Speaker 2: 15:58

And that, nun, she was a gift to obviously so many young people.

Speaker 1: 16:05

And that's part of sharing this story that we can learn a lot from. And as you look back in history, because you're doing biographies of people in history and I did a whole podcast series on Margaret Mitchell, author of Gone with the Wind, and I find history so interesting and I like to bring up these because a lot of times we in modern medicine assume that we should be able to fix everything and have everything perfectly figured out because we can do all of these great things. But it's like we've come a long way when we look back and compare to where things were. But there's still a lot of misunderstanding I think it's growing in this whole world of the autism spectrum and talking to that, so sadly they had to ruin the ending of the movie where everybody lives happily. Ever after you look at the editor's cut and you go no, we stopped the movie and she pans and she has a family and she has kids and she's teaching preschoolers and goats and doing all of these nice great things and of course it ends and almost for people who are listening with kids in the car, who are squeamish, can you walk us through that last chapter of her life?

Speaker 2: 17:25

So Rosemary comes back from England and is re-engaged with the family, but they're all busy doing different things. Rose hasn't really taken care of Rosemary for years, physically, in person. She hasn't been there every day for Rosemary. So she sends her off to a summer camp and she's supposed to be a junior counselor. But the young women that run the Catholic camp realize that Rosemary needs to have a counselor with her all the time because she just wanders off in the middle of the night into the woods and gets lost. She isn't good with the children Rosemary's sort of lost there, but she wants to do so well to make her parents proud of her, particularly her father. So she's asked to leave and then she's sent to Philadelphia to an assumption school. That doesn't work out. Then her father brings her to Washington DC and puts her on a convent and she keeps escaping from the convent at night and goes out drinking and partying and the nuns have to go out two o'clock in the morning and find her somewhere in the streets of Washington DC and it's very scary what's going on and the parents worry something's going to happen to her. These two doctors are operating on patients in a hospital in Washington DC and they're doing the experimental lobotomies on patients and they're claiming to the public that they are curing people like Rosemary and others with mental health issues, intellectual delays, etc. And saying we do this lobotomy and they come out of the lobotomy better than ever, able to live independent, healthy lives. And when I looked at their research, they lied, because most of the people coming out of lobotomies at that time could not live independent lives. 16% of their patients died and others had permanent health problems. And so Joe, in his rashness and his frustration at what to do with Rosemary, had her lobotomized and the doctors cut too much of her frontal lobe and they completely disabled her. When she came out of the surgery she could not walk or talk, she couldn't take care of herself, she was incontinent, she was physically disabled, permanently on her left side and it completely robbed her of an independent life. And she was institutionalized from November of 1941, when she had the surgery, until she died in January of 2005.

Speaker 1: 20:19

Wow, and she lived her life about 20 miles from where I live.

Speaker 2: 20:27

Oh, really yeah.

Speaker 1: 20:29

Yeah, st Coletta, and now reading more about her story and getting the backstory of what happened and reading from your book too. Her siblings were busy and the son of Kennedy was trying to launch his career and a lot of what his health issues that we'll talk on a different podcast about were hidden because had they known the struggles, he had probably wouldn't have gotten elected, because that and the shame of having a sister with struggles also would have been. There's a lot of shame, misunderstanding of what's going on and so there's so much to learn. I think that in the rush to hope for a quick surgical fix and in understanding more with autism spectrum, that a lot of times when we have difference in perception and people, somebody offers a surgery that's not proven by any evidence base to help, but somebody says there is struggling and she would likely if gotten the right support and and Hopefully people who now are in this situation where she was when she was in early grades, has that support and the understanding. But this is just something. Really, in the last 20 or so years or 10 years and for me, and often she may have been missed because she might have blended in, a lot of girls are missed and the spectrum and because they're maybe not as physically disruptive. They're more sweeter and all of this and they don't know how to care for them. So hopefully those who are listening can they're interested Get your book and read it and dive in deeper. That's part of why we do podcasts to have a longer discussion and get the backstory. That's why I encourage patients to write down their story, even if the doctor can't read at all, if they do have compassion and if you can organize in a chronological, time-wise and things. What's interesting, you probably were not expecting that you'd get a pediatrician and internist in a podcast Contacting you to talk about hey, you just wrote a story, but did you know that you did such a good job that there were these symptoms that we're not labeled that now we know that, looking back, there are a lot of people who in history we go all that person was likely on the spectrum or may have ADHD or other things, and now we know. But Hearing that story I'm like that's interesting. What about that Rosemary story? And in a brief Mention in the book on John F Kennedy by Robert Dalek, they had maybe a paragraph or two about her story and what you can put in a paragraph or two, but then you get your expanded version of the backstory and you're like you can get that two paragraphs ago Joe was such a meanie no, he had passion, he just fell for snake oil. Somebody offered Something and it's almost like somebody's embarrassed that maybe they got this great stock deal but they don't want to tell their wife that they're spending a million dollars on this deal because she'll probably say you're crazy, what they're gonna put this in her head and spin it around and Wait a minute and I think kick or Catherine, the younger sister, had a friend of hers who said no, don't do this. And I think Joe, and just like JFK, probably had ADHD as well. He was very impulsive in lots of ways in his life and also a risk taker, which Was a double-edged sword in his life. It made him very wealthy and with some luck, etc. But it also made, contributed to this falling for this and there wasn't the internet and evidence-based no Back then.

Speaker 2: 25:00

I will say I think he was impulsive and he was not. He did not do his doujou diligence that he would, I think, have done if it had been one of his sons, and Frustration with the rosemary it would just, he just wanted it taken care of. He did not expect her to become completely disabled. I think he truly believed she would just become calm and manageable. But yeah, it was completely.

Speaker 1: 25:28

Yeah, he obviously didn't want what happened to that he thought maybe she was having two to three years of this emotional dysregulation. And also at the time many, it was recognized, who had that neurodivergent style brain were more likely to fall into prostitution, more likely to have unwed pregnancies and being taking care taken advantage of wandering the streets in a big city and that would be very scandalous To have. That Kennedy girl did you hear about her? And so I think that was to, and I think the timing wise I think you, joe, was maybe the senator at the time, or running for Senate or the war had started than the young men were going off.

Speaker 2: 26:14

Jack and Joe, we're gonna go off and fight in World War two, but Joe Sr was planning their political careers at their home If they served. That would be a good part of their resume etc. That as war, come back as war heroes and the whole thing. It would be good for their political career. He didn't want anything in the way and Rosemary could have posed a problem.

Speaker 1: 26:37

Yeah, yeah. Any other thoughts about her life that you'd like to share for listeners?

Speaker 2: 26:44

I just would like to say that her life did have a tragic turn, but because of Rosemary, her siblings went on to really change the world and begin the dialogue about intellectual disabilities, physical disabilities, etc. Etc. So that we're still moving the needle, but they were a big part of it because they loved her and they cared about her and she inspired them to do something to change the world and provide resources and research money. Jack Kennedy signed some important legislation to fund research into maternal health, child health, mental health, etc. And so because of that, we're in a better place today than we were 50 years ago.

Speaker 1: 27:27

Yeah, they wanted so much to help and hoping for something and I think that's for a lot of people who are dealing with chronic pain and not getting the help or those invisible illnesses may be willing to try something when conventional medicine doesn't have much to offer. And there was somebody. A lot of it was pseudoscience. I'm going to expand in the podcast, filling in some of the blanks from the interview. But they tried untested hormone treatments which took a truth. Yes, that may help if you have these specific issues, but it doesn't cure autism or developmental retardation or delay. It could it if you had thyroid? Yes, but then, taking that extrapolation, and from the funnel of otomy, we know that a lot of some of the dysregulation is in that prefrontal lobe, the front part of the brain. Sadly, we found that through functional MRIs and we don't treat it by doing surgery on that. And they kept pushing through. And when we look at the state of medicine back then, consent she was all of those was a whole different wild west. How could that happen? And I think that's a word of note for people who are trying to do permanent surgeries. Back then that was also in the 20s the whole castration and sterilization that was happening, treating them like second-class citizens, and that was a lot of. It started in the United States by famous people who were supporting it and then Hitler took it to an extreme. But yet here in the US we had this one class that many treated almost as subhumans. And now to learn from that that I've had on the podcast talking about recently with the author of the book uniquely human, that everybody's different, everybody's created in their own unique way, their gifts and talents, and one of the things and when somebody does have special needs, that gives you a chance to serve and really take for granted just basic things in life and appreciate things and also how somebody else like her could enjoy just caring for those kids and the routine and the structure and the guidance and having that. And when I look at her life, that part of a huge part of the autism spectrum is that need for sameness and consistency and also some creative flexibility. So that Montessori method that mother superior was doing and likely just had a big heart and she just could connect and knew and cared and did not treat her as that and had patience and then was able to help any other thoughts at all or this has been fascinating because I had not thought about what the diagnose would have been, and you talked about autism.

Speaker 2: 30:21

Yeah, she could have been on the spectrum. Absolutely, I don't know. Maybe her medical records would show more, but we're not gonna be able to see that yeah, and they would not have used a label autism back then.

Speaker 1: 30:31

I think maybe some of the stuff that's left out of the record is the postoperative report and other things that might be just gruesome. Why do we need to know that she bled for a week after the wound didn't heal, or who knows stuff like that? It's an interesting thing as reading through that you know the Robert, I think Robert Dalek. On JFK's biography. Did you heard of JFK's or you've read his biography?

Speaker 2: 30:59

Yes, I, probably.

Speaker 1: 31:00

A few years ago, I read that Okay, and he went through with a couple doctors, but then that's a couple doctors. But then the perspective they look at one aspect or this aspect and trying to put it together and and I'm like gosh, I want to get into that Kennedy Library to try to get access to look at these medical records. But it sounds like to get access you, it's a special clearance, especially on some of that, the family has to agree. I think you did a really good job of making her life and story important and presented in a really, I'd say, balance, but a way that respects everybody involved. Tragically, joe had a stroke a couple years after that and he himself was probably worth off than Rosemary or almost as bad, where he had struggled with nonverbal, non-speaking or very immobile and struggled with that. If people want to get connected and learn more about books that you've done, how can they get a hold of or find that?

Speaker 2: 32:11

They can go on my website it's Clifford Larsen, allonewordcom, and it lists my different books that I've worked on and projects.

Speaker 1: 32:20

Are you a professor too?

Speaker 2: 32:23

I stopped teaching in 2015 because I do a lot of consulting work and I just couldn't write books and research and do consulting and teach, so I stopped teaching.

Speaker 1: 32:32

What kind of consulting like what projects that you might work on.

Speaker 2: 32:36

I do a lot of consulting that has to do with Harriet Tubman, the Underground Railroad icon, and the state of Maryland I'm always doing projects for them and the Tubman Home in Auburn, New York. There are two national parks dedicated to her, so I've done a lot of work for the national parks and tourism and things like that.

Speaker 1: 32:57

So, humbly speaking, are you or have you become the go-to person to understand her life?

Speaker 2: 33:09

Harriet Tubman.

Speaker 1: 33:10

Yeah, Harriet.

Speaker 2: 33:10

Tubman, oh yeah.

Speaker 1: 33:13

Okay, it's winter coming up in Wisconsin and I'm such a nonfiction person in this story as you couldn't make this up. This is a movie I hope you enjoyed. Hearing this discussion on Rosemary Kennedy helped us gain insights into the history of autism and ADHD related issues and use that to implement better care for ourselves, for our loved ones and, if we're healthcare professionals, for our patients. I'd love to have your feedback on this or other episodes. Please email me at dr Michael Lenz at gmailcom. If you haven't already done so. Please leave a rating and review and share this with others. Until next week, go team Vibro.