 Good afternoon. Good afternoon. Welcome. On behalf of the McLean Center for Clinical Medical Ethics and the Department of Obstetrics and Gynecology and the Buxbaum Institute, it's a pleasure to welcome you to this, our 24th lecture, the next to last lecture in the 2016-17 series on reproductive ethics. This is an opportunity for me to thank Julie Korr, who's sitting, raise your hand, Julie, for all of the work that Julie did in organizing and putting together the lecture series. I'm delighted to introduce today's speaker, a dear friend, Christy Kirschner. Dr. Kirschner is a physiatrist, a specialist in physical medicine and rehabilitation, a clinical medical ethicist, and a scholar in disability studies. Dr. Kirschner is on the medical staff at Schwab Rehabilitation Hospital on Chicago's west side and on the faculty at the University of Illinois Department of Medical Education. Christy is one of the founding partners of the Community Care Alliance of Illinois, a new not-for-profit health plan serving seniors and adults with disability in Medicaid and Medicare Advantage. Christy currently serves as a trustee of Community Care Alliance, where she also consults with executive and health management teams regarding care of patients with physical disabilities. Dr. Kirschner's clinical focus is on complex neurologic disabilities, with a particular interest in adult spina bifida, neuromuscular diseases, and cerebral palsy. Her academic interests include medical humanities and bioethics, again with the focus on disability matters. Her writings examine the training of health care professionals about disability, access for people with disabilities to health care and reproductive health services, and health disparities in people with disabilities. Dr. Kirschner is a graduate of Carleton College, where she was honored with a Distinguished Alumni Award. She's also been named as one of the 100 women making a difference by the magazine Today's Chicago Woman. Christy is a 1986 graduate of the University of Chicago Pritzker School of Medicine and returned in 1994, 95, to do a fellowship here at the McLean Center. Dr. Kirschner's talk today is entitled Sterilization Requests for Women and Girls with Disabilities. How Should We Respond? Please join me in giving a warm welcome to Dr. Christy Kirschner. It's always a delight to be back at University of Chicago, and I was telling my guest, Mary, how 1982, I started medical school here. One of the first people I had lecture was Mark on the doctor-patient relationship. So always being in this room brings back memories. So we're going to talk a bit about sterilization requests for women and girls with disabilities, with intellectual disabilities. In terms of my disclosures, I have no financial disclosures. I am on the board of three different not-for-profits, Access Living of Chicago, which is our local independent living center. As Mark said, the Community Care Alliance of Illinois is not-for-profit and a low liability company for Medicaid and Medicare Advantage for seniors and adults with disabilities and devices for the disabled, which is a recycling company for durable medical equipment. So my history in this area dates back to 1991. I was a brand new physician working at the Rehabilitation Institute of Chicago at the time on the spinal cord injury unit. And I was working with women with spinal cord injuries and talking to them about preventive health care and reproductive health care issues. And realizing that many of them simply were not getting reproductive health care services. With my colleague, Dr. Susan Rainer, she and I decided that we wanted to try to address the lack of access to reproductive health care services. And we started the Health Resource Center for Women with Disabilities. And it was a bit unique because we did it in partnership with the women we were serving. So we had a group of about 20 women with a variety of disabilities and backgrounds that we partnered with on creating the center. And in fact, the medical components ended up being the least important over time. We did have accessible OB-GYN services. We had domestic violence services, which served men as well as women with disabilities. Parenting support, which we'll talk about as a critical area. Mentoring program for teens and adults, teens and young girls with disabilities. And a lot of our work ended up being around advocacy regarding health care access. And we had newsletter and we had a variety of other educational interventions. But we realized through hearing the stories that there were some themes in terms of why a center like this was needed. Women described feeling when they went to their doctors that they were being treated as asexual, not interested in reproductive health care issues or potential parenting. And they also just described basic problems getting on examination tables. Many offices were simply not accessible. Many of them had not gotten basic sex education services growing up. They were perceived as being unable to parent or unfit parents that there was a lot of stigma and prejudice. I'd like to mention, if you read The New York Times, there's an article today that I would suggest folks read, which tells you that these issues have not gone away. There's a disability series. And the woman who's writing has cerebral palsy. And she describes her experience with her pregnancy as well as the issue of selective abortion and how that was dealt with in her pregnancy. But this issue of stigma and prejudice permeates reproductive health care services. And we're gonna talk about how we still see them today regarding issues of sterilization requests. And there is still substantial misinformation about pregnancy and parenting capacity. The research was not a big part of the center that we had at RAC. We did try to document some of our experiences working with this complex population. We profiled the pregnancy outcomes of 36 women that we worked with with spinal cord injuries to spinal muscular atrophy type one. The woman with spinal muscular atrophy type one actually went through two pregnancies with us. And then the issue of intrathecal backlip and pump. But there were essentially four kinds of cases that I saw during my time working in reproductive health care services. The first kind was a woman with spinal cord injury who wants a tubal ligation. So she's sure she would never wanna become pregnant. The second is the parents or guardians of a 24 year old woman or adult woman with a cognitive disability requesting tubal ligation. And this takes kind of two different forms. One is significant cognitive disability from a brain injury living in a group home and they're afraid she will be sexually abused and become pregnant. And the second is the woman with an intellectual developmental disability who's sexually active. And the parents or guardians are concerned that she would not be able to parent. The next case is the girl or the adolescent who's having menstrual hygiene issues and the parent who requests a hysterectomy to deal with the menstrual hygiene issues. And the last is a case that I never personally dealt with but became a firestorm during my latter years running the reproductive health care program of Ashley X. The parents of a six year old girl with a static encephalopathy and intellectual disability where a hysterectomy is requested as part of a growth attenuation protocol. So we're gonna talk about those cases but first I wanna provide just a little bit of background. Most of this will be familiar so I'm not gonna spend a lot of time on this issue. But the definition of sterilization is as indicated here and I just wanna indicate I was an expert witness on a case regarding the tubal ligation for a woman with an intellectual disability and the judge in that case would not allow me to use the word sterilization for tubal ligation which I find interesting because you could always have in vitro fertilization of her eggs with assisted reproduction to produce a pregnancy. So that was a very interesting experience. I do wanna differentiate as we talk about the kind of sterilization request between voluntary, non-voluntary and involuntary sterilizations where the person's making the request on behalf of themselves, no question of capacity, involuntary where the person clearly opposes and non-voluntary where they're really not able to express a preference. So I'm not gonna spend much time on the history of eugenics and sterilization but I wanted to mention that the formation of the request with early eugenics in the 20th century was really a different foundation around the well-being of a population. It was how do we create good stock based upon the pseudoscience of eugenics? So it was a population-based interest and the eugenics campaigns targeted many people with disabilities. People-minded was sort of a bucket term that could include people with intellectual disabilities, other socially marginalized populations, poor people, criminals, alcoholics, people with disabilities and psychiatric illnesses. And there were kind of two frameworks that eugenic campaigns took in the early 20th century, what they called positive eugenics where you tried to encourage people of good stock to marry people of good stock. So these fitness family contested at the state fairs are just fascinating to me and that's where you know you try to show what good stock looks like and you're encouraging people of good stock to marry. Then you have the negative eugenics campaigns where you're trying to prevent people from marrying who you think are a poor stock and you would do this by preventing marriage, by sterilizing or segregating populations. The Lynchburg Colony in Virginia for the epileptic and feeble-minded was one such institution and in fact that's where Carrie Buck was. So you look at Carrie Buck who is the person that went, that was the foundation of the case that went to the US Supreme Court that was decided by Oliver Wendell Holmes. Paul Lombardo has researched her case beautifully. We've got the Lynchburg sterilization materials that have been well documented if you're interested in learning more. Henry Loughlin was a animal husbandry person who wrote a model eugenic sterilization law. It wasn't picked up federally but it was picked up by many states who ended up writing sterilization laws and indeed there are even still some states with sterilization laws on the books even though they're not being used but you know somewhere around 65,000 people were sterilized through these laws in the United States. Now that was based upon population principles. You know we want good stock. There was a little hint of suffering being inserted by this movement that was championed by Harry Hazeldon of Chicago. I think German-American hospital might have been the old grant hospital. I haven't been able to track that down but I find this to be interesting history. So again early in the 1900s Dr. Harry Hazeldon was beginning to champion an idea that babies born with severe disabilities really should not be supported but should be euthanized. And this movie the Black Stork was the idea that you had good babies that were delivered and bad babies that were delivered. So that was an individual level of suffering that he was describing that these children would come into the world only to suffer. Then we get to World War II and the Nazi T4 program. And the T4 program was the first iteration of the extermination centers. It targeted people with disabilities. It was to try to kill people of all sorts who were considered burdens on society. You know best estimates are 70 to 200,000 and what's really interesting to me about this history is as opposed to the concentration camps a lot of these killing centers were in hospitals and health professionals played a significant role in identifying and diagnosing people's condition. We have some history that has been well captured about this experience. Hugh Gallagher wrote a book called by Trust Betrayed documenting the T4 program and the role of the health professionals where he characterizes the dispersion of responsibility. That the health professional was not saying I was writing the depth order for the individual. I would just simply certifying them as having a disability and then they'd go on to the next queue and the next queue. But when this was exposed, of course, a lot of what was happening in eugenics in the United States and Great Britain clamped down and we were horrified at where social eugenics had taken us. And those state laws were much less used after World War II and we began to see a shift towards decisions regarding sterilization around the best interest of the individual and not based upon the state laws around who was considered good stock. Part of the consequence of this will be that we don't really know how often these sterilizations are happening because they're happening in courts and oftentimes their cases are sealed. We did see though a big push then after World War II towards human rights statements. The UN human rights, we started seeing statements by American College of Obstetrics, Gynecology, Pediatrics and other professional organizations. In terms of what do we know now about sterilization? Well, we know our best guess is this about 30%, 36% more likely to occur in women with disabilities of some sort. This was based upon a large database study where we tracked families. And we also know, which I find interesting that there seems to be a lower rate of long-acting reversible contraception such as depot agents or IUDs. We also know that parents of kids with intellectual disabilities do think about sterilizing their children. 2003 Doug DeGama had written an article and found that about half of parents of kids with intellectual disabilities had considered sterilization. So let's talk just a moment about human rights statements. So it's fascinating history again to look at Eleanor Roosevelt's role in helping to champion the declaration of human rights. A lot of this came from her husband's work where he was championing the Second Bill of Rights in the United States. And a lot of his language regarding the Second Bill of Rights was adopted into the Human Rights Declaration. Interestingly, United States did not sign on to the declaration. But this is where a lot of our research ethics and informed consent doctrine really started. And we began to see changes in the way we were treating people that were considered vulnerable in different capacities. There were a number of different kinds of human rights statements made by the UN, including for children, women, et cetera. In 2007, we had the Convention on the Rights of People with Disabilities, and they used language about the right to bodily integrity, the right of women to make their own choices, and the abolition of forced treatment without the full and informed consent of the patient. ACOG has also really taken a leadership role in terms of making statements about reproductive health care services. And this particular statement from 2007 basically indicates that non-discrimination, the indications for major surgical procedures such as hysterectomy should remain the same as for non-disabled patients. We weigh the risks, the benefits of the procedure in making that decision. Now, if you look at the International Federation of OB-GYN, they take a really strong stance on not allowing involuntary sterilization that surgical decisions actually are not allowed in the International Federation of OB-GYN that we still consider a woman with a cognitive disability to retain control over her body, and that information has to be provided in a format that's accessible. So with that background, as we start turning from the population to the individual level, I wanna talk about some of the kinds of cases that we would see. So this first case, 30-year-old unmarried woman, spinal cord injury, requested tubal ligation, she says she's sure she would never wanna become pregnant. What do you all think? Is this a controversial case? How many of you think it's controversial? Okay, why do you think it's controversial? She may not have the experience to know if she wants to have a child at that time. She's gotta state what the extent of the spinal cord injury is. So you mentioned her spinal cord injury. Why would the extent of the spinal cord injury be a relevant factor? I think they want you to use the mics because it's being recorded. So her ability and willingness to enter a relationship might be at least partially dependent upon the spinal cord injury, and that might influence her decision making. But if she is able and willing and interested in establishing some type of relationship that would be a longer term and wanna have a child, she may change her mind over time. This would depend upon when you're asking it, I think. Okay, anybody else wanna come in? Dan? I would think it would be the same whether or not she had a spinal cord injury, a 30-year-old woman who wants a tubal ligation. I think it's something that needs to be considered. But I don't think the spinal cord injury has anything to do with it. So I think that... It might make a difference how recent the spinal cord injury was also. Okay. So what I'm hearing is that there are issues that we may wanna explore with her about her rationale, how fully informed she is, how sure she is. But I think, Dan, your point of how relevant is the spinal cord injury, I think it's always a good test for us to say, how would we feel if this woman did not have a spinal cord injury? How does the spinal cord injury change the nature of the decision? I actually perceive this as a fairly straightforward case if she's truly informed, if she has capacity. I mean, to me, those are the critical questions. And is there any issue of coercion? And with people with disabilities, you always have to make sure that there aren't voices in the background that are pushing them to make a decision. It's the foundational principle of self-determination and autonomy. Fully informed person has a right to make their own medical choices. And in fact, if you look again at the human rights and professional standards, a woman's right to voluntary sterilization should remain unimpeded and that it's ethically permissible according to the ACOG opinion that's hot off the press April 2017 to perform a sterilization and an ill-lippers woman who does not wish to have a child. So I think your issue of how certain are they, will she be regretting her decision at some point is one that has certainly been carefully thought about. But I think after you've gone through the process of the fully informed decision, it's permissible. So let's go to the prototypical case two. And again, we're still dealing with adults. So this is an adult woman, she has a guardian. She does not have decisional capacity or the ability to provide a scent. Okay, so the parents guardians of this woman requested tubal ligation because she lives in an institution and they are afraid she will be sexually abused and become pregnant. So what do we think about this case? Yes. I would think their concern for pregnancy should not override their concern for her sexual abuse. That's what they should be concerned about. They should be getting her out of that place if they are truly concerned. Okay, any other thoughts? Okay, so that's gonna be a non-voluntary sterilization. She's not gonna be able to weigh in on the decision and I think your point about the abuse being the major issue is a very important one but it's also important to note people with intellectual disabilities experience sexual abuse at a higher rate than those who do not have a disability. And we have some pretty robust data regarding this. So the issue of ensuring her safety is a critical issue. And at the end of the day, if there is still a concern of making sure she could never become pregnant if she were to be abused, to consider less invasive and risky alternatives as options. Any other thoughts about that particular issue? So the Pediatric Committee on Bioethics has also said, we shouldn't be considering sterilization for that reason. It's not gonna prevent sexual abuse. It's not gonna prevent sexually transmitted diseases that that issue needs to be dealt with head-on if that's a concern. And this ACOG Committee opinion said that the initial premise should be that non-voluntary sterilization generally is not ethically acceptable because of the violation of privacy, bodily integrity and reproductive rights that it may represent. So their default is you really need to have compelling reasons to override the default position. I am gonna note here that with ACOG, they periodically update their opinions. How many OBGYNs in the room do I have? You know, I have to say they've replaced this opinion with the April 2017 statement that I shared with you before that they did not update the information on disability and intellectual disability. So I'm hoping because they have indicated they replaced it that there's still something more coming down the pike that clarifies, but this is the best statement we have from ACOG on this matter at present. So my next case is a variant where you've got a woman with intellectual disability. She's lived her entire life with her disability and she is sexually active. She's involved in relationships and she hopes someday that she'll get married and have children, but her parent guardian feel that she could not be a competent parent and request that she receive a tubal ligation for that reason. What are your thoughts about this case? Is this a harder one? How come? Did you have a question? I think that it would be difficult if she's not going to be able, I know she cannot assent, but she can fight back if you try and take her for one. And I think that it's gonna be really hard to get someone to do that. Plus I don't think it would be right. I think again, you can use long-term reversible contraception without having and work with her to accept something like that and discuss when it might be reasonable to reverse it as opposed to forcing her to have an invasive procedure that she doesn't need or want. Does anyone have thoughts about the assumption that she couldn't parent? What do we know about parenting capacity? Yeah, I mean, that's the question. I mean, how impaired can you be and still be a competent parent? How would you figure that out, Dan? Uh, I am not sure. So it's a tricky one, okay? It's a tricky one. Can I tell you, this is another area? I'm sorry, did you have that? No, it's okay. Well, from time to time, when I see something that implies to me bad parenting, you know, in my darkest moments, say to my sister, wait, people ought to be licensed before they can become parents. And my sister, who is a lawyer, says to me, who's gonna decide on the licensing requirements? Who's going to determine what those levels are, which I think is kind of what Dan was saying. How do you determine whether she's competent or not? Who's gonna determine that? What's, you know, who says the guardians can make a competent decision on that? Right. I think those are really thoughtful comments because this is the population where the default position is to question parenting capacity. And these books and films that I've profiled are examples. A question of David is a couple that had cerebral palsy who wanted to adopt a child and it was a very fraught system for them. And in the end, they were only allowed to adopt a disabled baby. A mother's touch, she also had cerebral palsy to have her children were removed before there was any evidence that she could not parent them. And she wrote a book about her experiences. Her story started one of the parenting support programs called Through the Looking Glass in California to help look at parenting capacity and what supports parents with disabilities might need to be able to parent. We had Force Gump. I am Sam as examples of two movies about parents with intellectual disabilities. But this is an area where we've got stereotypes. There's stigma, there's bias. And I think at the end of the day, people with disabilities do describe having a lot of social ideas and attitudes that question their capacity to parent. If you go back and you look at the old literature, a man with a spinal cord injury would be questioned because he couldn't go out in the backyard and play baseball with his son. Is that a critical variable to say you can be an adequate parent? So this question of our litmus test for parenting is the really critical one. And should people with disabilities be subject to a litmus test in a higher standard than people who are not disabled? We have many parents as you are pointing out who demonstrate inadequacies in their parenting capacities and skills. So what is the right way to approach it? And we are balancing reproductive rights against the nurturing of future children. We had a couple of Illinois cases where this has been in the limelight. The first is a woman with an intellectual disability whose guardian wanted to have her forcibly sterilized. The second was a woman whose the father of her child said she was not able to adequately parent because she had quadriplegia. American Academy of Pediatrics does take the side that it's appropriate that we consider the well-being of future children in these conversations. But I think when we look at the issues of bias and stigma, people with intellectual disabilities somewhere between 40 to 80% have had their children removed and a lot of these are just based upon their diagnosis, not upon parenting incapacity or demonstration of harm to a child. And we have growing evidence from groups like through the looking glass that parenting support can make a big difference in terms of people with intellectual and developmental disabilities being able to keep their children and safely care for them. There was a national report in 2012 from the National Council on Disability looking at the parenting rights of people with disabilities that profiled the experiences and the human rights issues that they felt were occurring as well as the data on parenting capacity. The ARC is a intellectual developmental disability advocacy organization and they also have written about this that indeed the biases that they're not fit, they're limited supports, that it's more adversarial that people with intellectual disabilities are actually fearful of reaching out for assistance because they're afraid the children will be taken away. Their recommendations are that we change the paradigm to one of more support. The ACOG opinion again that I referenced here is the opinion from 2017 which replaced July 2007 and the major statement is coercive or forcible sterilization practices are unethical and should never be performed but then they also acknowledge in the statement that sterilization of women with cognitive disabilities raises a host of additional ethical issues. So I'm not sure where ACOG stands and I am waiting for the next iteration of their statement on that. But at this point, I think that there is the beginning of a shift to say okay what is our litmus test for parenting, who gets to decide and should we be taking more of a support? So with my role in the Women's Center when we had a pregnant woman with disability we would send them to occupational therapists during the pregnancy to begin to look at what kind of needs were they gonna have? Could adaptive equipment help them? Were they going to need some physical assistance with parenting? And then this through the looking glass for those of you who might be working with this issue is a terrific resource with a lot of information about research on parenting for people with disabilities as well as adaptive and supportive equipment for people. So I'm gonna turn to my next case and this is gonna be particularly a pleasure for me because I'm gonna get to introduce my guest. So this is a case where a guardian or a parent request sterilization because of issues of menstrual hygiene. Not an uncommon problem that we see in girls with disabilities. And so there are certain ethics issues that I'm just going to highlight, that you've got here a woman or a girl that has physical disability but she's intellectually intact. She can provide an opinion. She's a minor but she will be competent and able to make her own decisions some day. So the question of why now, why not wait? You know, how does she really feel about the decision and is there any element of coercion and what are the assumptions underlying the decision about her likelihood of future pregnancy and what other options have been explored? So Mary Staten, I'm delighted to have Mary with us today. And Mary and I have known each other probably about 25 years I think. And when I first met Mary and she has given me full permission to divulge that she and I also have had a doctor-patient relationship, I met Mary in the context of my work in the Women's Center and I'm doing just my usual history and physical and she tells me that she had a sterilization as a teenager. And I said, huh, tell me about that. And she said, you know, I've never had a health professional ask me about that before. And as she started to tell me about it, I felt like even though it had happened over 20 some years ago, it had almost happened yesterday in terms of the rawness of her feelings. I knew Mary just a little bit at that time, but I knew she was a good writer and she came back to see me and we talked about, you know, her perspectives. And I also said, Mary, you're a writer. You know, maybe you should think about trying to write about this experience for health professionals. And so I'm going to engage in a conversation with Mary about her experience and where her writing took her. There is a piece that will be passed out to you at the end of our conversation called Raising a Woman. And Mary wrote about her experience and it was published in A Piece of My Mind in JAMA and actually has garnered quite a bit of attention as health professionals have also reached out to Mary to tell them how important her perspective has been. But in my work in rehab and education and disability ethics is, the lived experience is absolutely critical. And I think for people to understand that these experiences can have major effects one's feelings for a lifetime is important. And part of what Mary taught me, so I'm just going to ask Mary who is also a master's of divinity and has a rich professional life as well as I said, a writing life and a blog to share with you a bit about what happened. So Mary, take us back to your teenage years and what was going on then in the conversations that resulted in the hysterectomy? I was 11 when I started menstruating and during the time I was menstruating I was dependent on somebody to help me with being in the bathroom. And that was either my mother or the school nurse at that point. I'm the child of a mother who did not like asking for help. I'm not sure what kind of help there would have been to give her a break in that or to spell her. But I'm pretty sure she wouldn't have availed herself of that help. And about the time I was 12 or 13 we started having conversations about the fact that during my menstrual cycle I was doing my menstruation, I was very dependent on her. And my memory, which is 40 years old at this point is that both of us were concerned about my level of dependence. But she took me to a gynecologist who examined me and said, Mary is physically capable of having a child. But so we had, we continued to have long conversations about how difficult my periods were. And so the doctor put me on the pill for about a year. But we knew that that wasn't a long-term solution. So after that he started prescribing a shot that I took once a month that was supposed to eliminate the periods. And all that did was it lessened the flow of the period, but it was a fairly constant experience. And I remember during this time or shortly thereafter having conversations with both him and my mother about having his direct to me. I remember him asking me how I felt about having children and I'm all of 13 or 14. And I'm responding very rationally saying, well, I can always adopt. And he made it clear that I would still be a woman if I had this surgery because he wouldn't take away my ovaries. But somewhere along this process, I also remember conversations with my mother in the background, I mean he, which were in the background as far as he was concerned, having conversations with my mother where she said, you can't, she either said you can't carry or you'll have difficulty delivering a child. And I said, well, what about, what if in the future there is a possibility like some kind of, I think I use the word miracle. And she said, which was really odd, she said you've had your miracle. She said when you were born, you were born prematurely and doctors knew enough not to give you enough, not to give you too much oxygen because that would cause you to become blind. So, and I kind of remember either then or later thinking, is this a one miracle life? Because I had a miracle when I was a baby is that all I get. And then I remember a conversation where she said, you could be attacked, you could be raped and become pregnant and you wouldn't be able to run from your attacker. And I remember saying to her, most non-disabled people who are raped can't run from their attacker either. But obviously there was, well, there was some kind of pushback that I don't really remember, but it was clear that that wasn't gonna get anywhere. And I think in retrospect, not too many years later it occurred to me that the question I had about a miracle and the question then that my response to her concern about my being raped was a way of, I mean it was a 14 or 15 year old's way of saying amidst obvious resistance, I'm not really ready to make this decision about having a child. I'm only 14 or 15 and you're talking about something that's supposed to happen a lifetime from now. I also remember my mother having a conversation amongst me in the presence of me and the gynecologist saying we have two cats and I think Mary's concerned because we had them spayed and she doesn't want us, she sees a parallel. And he reiterated that he was not going to take my ovaries and therefore I was going to be a woman and what he didn't do is look at the emotional, I mean I had a very rational response and he had a very rational response. No one looked at the emotional response. No one said simply because this 15 year old cognitively alert person has resistance, that should be enough of a conversation stopper about this. I also remember my mother telling me that he had presented my case to physicians in Philadelphia who had agreed that it was a good thing to do. At some point I remember when I was about 14 or 15 and my mother increasingly was frustrated, felt tied to me and it became increasingly clear that she was frustrated. I remember there was a night eventually where I woke up, my period had started and I knew that my mother would be kind of, well not kind of, she would be angry either about having to get up or having to deal with my period and so in my 14 or 15 year old mind I thought I'd rather deal with her being angry later than now and what happens when you're having a period and you wait till later is that when you wake up in the morning you're a mess and so she was even angrier than she would have been. My parents had a bathroom within their bedroom and I remember being in the bathroom with my mother and she was frustrated and angry and my father was getting dressed in the room and she blurted out if you don't have this surgery I will commit suicide. And that just stopped me cold and I really felt like she would commit suicide and I would be responsible and my father was in the room getting dressed and he was a rather passive, I mean a nice good person but a rather passive person who I can't remember him ever standing up to my mother but I remember him responding to that saying honey it's not her fault. And she said something to the effect of I don't care and so from then on I just didn't say anything and my next memory is that the night before the surgery I remember lying in the dark very much aware that I did not want this surgery but also aware that if I, I mean imagining telling a nurse or doctor at that juncture that I didn't want the surgery and feeling like this is sort of your last chance if you're gonna not have the surgery but also feeling like if I say that my mother will be royally pissed and I can't, you know the imagining the outcome of that was just horrific. So I had the surgery and my mother had told probably told me that I would be in pain after the surgery but she told me that about a lot of surgeries and I didn't remember being in pain so I'm guessing I didn't believe her but when I woke up I was being, I remember being pushed on a gurney and screaming at the top of my lungs what did I do to deserve this? And my family sort of laughed and talked about the nurses shutting patient doors and I think partly it was a reaction to the physical pain that I was in but I also really think it's a question of, I mean again in my young 15 year old mind saying what did I do to deserve this whole hysterectomy and to be, I mean I felt responsible for all of the tension that was in my family and when I came home that tension evaporated and so for a number of years my mother would ask me we did the right thing, right and I knew she was looking for validation and I didn't have whatever it took to say no, not really, this is not what I wanted so I would tell her yes and she would ask me that question periodically which also said to me she's not entirely convinced that we did the right thing and I ended up in therapy about 20 years later because of a depression that was largely around the fact that not only that I had the surgery that I didn't want but that I had been unable to tell my mother honestly that I didn't want the surgery and so after a long kind of conversations with a therapist I was able to get my mother into the therapist's office for one conversation in which I told her what that was like for me and what I really felt and she said I would not do that again she said it was a difficult time and I wouldn't do it again and I heard from my sister later that she went back to her previous beliefs about it and I remember saying to my sister well that's okay I've said what I had to say I got a chance to say what I had to say and I also knew nothing was gonna reverse the surgery so at that point the issue was did I get a chance to say how I really felt and to stop saying to her yes it was okay when it wasn't. So you chose to write about it and what I recall Mary is that was not an easy decision because you struggled with whether it could be anonymous published anonymously or whether your name would have to be associated with that and we had decided on a piece of my mind as a place where Mary's perspective could reach health professionals so do you wanna talk a bit about what that was like for you? My mother was alive when the piece got published and she had a really really low self-esteem probably the lowest of anybody I've ever known and so anything that remotely critiqued her parenting even though the piece as you'll see is understanding of what I mean I'm more than capable of imagining or knowing what she was going through and what I think fed that decision that she didn't own up to but from what I know about her so it acknowledges that and in no way paints her as a horrible parent but any imperfection or anything that displayed that was a threat to her and so I think if well I know if she'd had any sense that I had gone public with this most intimate story that although it didn't portray her as an ogre certainly didn't portray her in the most favorable possible light would have been a threat to her and I was struggling with what that would be like. My brother who has the most, we all have a sense of humor but my brother inherited like 10 times the dose and when we knew it was gonna be published in JAMA he said I think mom's subscription to JAMA ran out and I don't think she renewed it so and when they called me it was sort of either we don't publish it or we publish it with your name and I was aware of how critical the piece was and I mean not critical in the bad sense but how important the piece was and it was important to me that it get out there and if I could do something to prevent what had happened to me then that was really important. It would turn the story from just this horrifically tragic thing that had happened into something that you, I mean I'm a firm believer in taking what's happened to you and using it for good and positive as much as it can be so. And as I recall Mary when you described your mother you had a lot of sex education for a young girl with a disability. Which Mary's mother in many ways was a very proactive person in making sure you got your education that you knew about your sex. Do you wanna say anything about what that was like? My mother was a volunteer for Planned Parenthood when I was young and I remember her bringing home like three dimensional models of the male and female reproductive system. Which was like wow. I also remember when she tried to explain to me the realities of sex thinking well I was 10 at the time and thinking well I have a female body so I really don't need to understand the male and the, but she did. And she told me either then or later that she'd had a horrific experience of her own sex education and she was scared to death of her menstruation. And she was bound and determined that that was not going to happen to her daughter. And I remember being about 10 and having a, I belonged to a club of what was then called Handicapped Adults and one of the, we had a social event and one of the women was probably about 16 and she had cerebral palsy and was deaf and she was scared to death of dancing with somebody because she thought she would get pregnant. And I remember even at 10 or 11 or however old I was thinking that was pretty amazing and being aware that my sex education had been much better than hers which was pretty awesome when you're 10. So part of why you chose to publish is you did want to inform health professionals about what your needs in retrospect were. And I wonder if you wanna say more about what you wish would have happened. You alluded to the fact that your emotional needs and feelings were not being acknowledged but do you have anything more you would highlight about that time? I wish we had done it very differently. I think the first, well, the only medically appropriate response to what was happening was to ask a doctor if there's a drug that would reduce my specificity and maybe make it possible for me to, or easier for me to pull up a code text pad. We didn't consult a physical therapist or an occupational therapist. I wish my mother had said to somebody, Mary went through rehab when she was a young child and so obviously the issues are different in puberty. So we never went through that possibility and nobody ever acknowledged that this, I mean as soon as the doctor said, Mary's perfectly capable of caring children, we all knew that this was not primarily a medical problem. The only medical aspect was possibly reducing my specificity and so it shouldn't have been treated at all medically. It should have gone to a physical therapist and I frankly don't know what the outcome of that would have been but and the bottom line was if a 15 year old has any resistance and is voicing that, there should have been some recognition that a 15 year old with a disability is very vulnerable that if she's voicing what seems like superficial resistance that can be easily overcome with information, perhaps there's something going on at home. I mean that wasn't explored. I don't know that I would have said anything truthful to them if they had asked is your mother coercing you. I probably would have said no but you can, I think you can safely assume that if a medically healthy 15 year old is and her mother is exploring the possibility of permanent sterilization, there is probably some element of coercion going on. Even if my mother doesn't say I will disown you, I mean if a mother says I will commit suicide or even if a mother's clearly stressed that provides that put pressure on me and so some kind of exploration and some kind of realization that no matter what happened, if this person is voicing resistance that needs to be the bottom line and that unless there's a medical issue, 15 is much too young for a permanent decision about having a child. So you can see why Mary is just such a incredible. Thank you. And if you read the piece, you will see that she's very compassionate and has a very broad view of the stresses of all of the stakeholders involved. I wonder Mary, are you willing to take a question or two? Sure. Anyone have a question for Mary? Yes. Mary, I think there's a lot to learn here. One of my questions has to do with ethics consultations when we have parents who come forward with the request. How might you suggest that we phrase questioning their decision or their wanting to have a hysterectomy so that they're kind of open to rethinking it as opposed to immediately being defensive, especially because they were the primary caretakers and loved their child. But I think you raised some good points that I think is your mom indicated, like they would want to know to think about. So do you have any suggestions for how we might raise the issues that you have raised with them to consider in terms of best interest for their child? And maybe it's just giving them your article. That's certainly a possibility. I think I would start by, if it's possible, having a separate conversation with the mother and the child or daughter out of the room and saying to the mother in some way, tell me about how stressful this is for you and giving her some options for support. Again, I mean, it's difficult because I don't know that my mother would have availed that. But simply saying, I mean, I think partly simply saying, I can certainly understand your stress and your concern, but I am also concerned about the well-being of your daughter and as, I mean, maybe being as, I don't know if the word is blunt, but as direct as saying, as long as I'm your daughter's doctor, it's your daughter that's the primary concern. And not that those are separate, but saying I don't see this as a medical, you know, this sounds like more of a, something other than a medical issue. So why don't we, before we make some permanent decisions, why don't we explore some non-medical options? I'm going to turn to a list that Mary generated when we did this first together about the principles that she actually advocated. And so the first one, I think you've heard Mary articulate very clearly, if it's not a medical problem, don't look for a medical solution, look for alternatives. Mary, do you want to say anything more about the stereotypes and the ideas about being asexual, your potential for falling in love, wanting to have children someday? We do have a stereotype about people with disabilities being asexual, or at the very least, minimizing their sexuality and minimizing the right that they have to make decisions about having children. And I don't think it was acknowledged that both my mother and my doctor at that point were victims almost unconsciously of a social understanding that people with disabilities can't parent. I mean, nobody said that to me, but nobody challenged the doctor's assumptions about people with disabilities. And I think doctors need to be particularly vigilant about questioning if they are recommending the sterilization or even consenting to the sterilization of a cognitively alert and not medically at risk person, they need to seriously examine their own stereotypes about people with disabilities and their own assumptions about resources and support systems that are available, even ways of dealing with pregnancy that will not be normal and a delivery that will not be normal because normal in our culture is defined as non-disabled. And this next one about peer support, having the opportunity to talk to other, your mother having the chance to talk to other moms of girls who were dealing with menstrual hygiene issues and how they solved it and married the same. And again, exploring how the daughter feels apart from the mother and have that conversation. Did you ever have a conversation, Mary, with your mother out of the room with the doctor? I don't believe so. And having a doctor say to you, you know, you, okay, you've told me what you thought, tell me how you feel. I mean, I'm almost asking for a therapist approach, but it is, find some way of getting at the person's feelings and making as sure as you can that that person knows that they're in a safe place to disclose to you. And even saying to me, you know, with my mother out of the room, there are other options. And if you have any reservations whatsoever, we can, let me assure you, we can find other options and other ways of resolving the real issues of independence or the real issues of the tension. Yes. And I think that gets at this next issue of how the wellbeing of a child is also interrelated to their family and their parental support. And that's part of what makes this difficult, right? Your mother was having to provide a caregiving function. So it made it particularly difficult. And this issue of coercion was not overt, it was more covert. But to think about, you know, when I work with moms who are beginning to deal with menstrual hygiene issues, introducing the idea that your daughter may need a personal assistant as she grows. She's going to need to have family caregivers. I mean, caregivers apart from family members. So one of the things as we do transition care planning is talk about if it's only been a family member providing care up to a certain point, is it time to begin to introduce other people? And part of the problem with that, of course, is always cost. Because there's a cost associated with that. Now by the time Mary turns 21, she's going to be able to get long-term services and supports most likely through the state that will help pay for personal assistant services. But there might be a fee associated with hiring somebody to give a parent a break. But it's one of the things that we want to talk about and begin to address. And Mary raised, I mean, we do make these rehab services something. I can't emphasize enough how creative therapists are who work with people with mobility impairments about dealing with issues. And I would always want to see first, could an individual's ability to manage their own personal hygiene be restored through the intervention of a therapist? And then these other points, I think Mary has already talked about. There is a statement by ACOG from August 2016 that talks about the need for gynecologist to address menstrual hygiene in a very global, holistic way that acknowledges all the issues that I think Mary has talked about. So I think it's important to know that. Again, I think we are moving forward in terms of some of the recognition of the rights and the needs of women with disabilities to have access to information. So this last case, we're gonna run out of time. And that's fine because in some ways it's the most complex and the most rarefied. How many of you are familiar with growth attenuation treatment? You know, it's been very bizarre in my mind. So I want you to be familiar with it and to know some of the resources that are available if you do get consults or questions regarding growth attenuation. But the story really broke in 2006 when the doctors that were involved in creating the Ashley X treatment wrote about it. Doug Digima and Gunther wrote attenuating growth in children with profound developmental disability, the Ashley X treatment. And the parents developed a blog and wrote about their perspectives as well as at the same time that the doctors were writing about it. That they wanted to share their thoughts and perspectives with families who might be interested in similar treatment. And they called their daughter Ashley a pillow angel. And the reason why they did that was she stays where they place her. She doesn't move on her own. So what are the facts of Ashley? She was a six-year-old with severe developmental disability. She was alert, but she was nonverbal, limited interactivity. She seemed to recognize people. She was able to have limited interaction with the environment. She had a feeding tube. She was dependent in all her self-care. And her mental age was estimated at three months. At age six, she began to show signs of early puberty so her parents took her to an endocrinologist. Now early puberty usually doesn't result in a decision to accelerate puberty with growth attenuation. So immediately there's something kind of unusual going on here. But they wanted to discuss how to keep her small. So she'd be portable, easier to care for at home. They were afraid of having to institutionalize her someday or have her cared for by people who were not family members. So what was the treatment that came up with? Removing her uterus. Again, keeping her ovaries in place. Removal of breast buds. So her breast would not develop. Take out her appendix while they're in there. And then high doses of estrogen treatment for two and a half years. So this wasn't being done for the purposes of sterilization but it was part of the treatment to prevent her from menstruating. So as I've worked in disability issues, there's certain things that I think are really critically important when you're looking at a moral issue or an ethics issue. And I think one is to take a step back and ask what is the problem here that we're trying to treat? What are the medical facts, the social facts and who are the stakeholders? What do we know about the perspectives of various stakeholders? If there's conflict, what is the process for resolving conflict and what about the power differentials? So the stated goal was to improve Ashley's quality of life by keeping her small but they also had a lot of secondary goals that they list. Prevention of sexual abuse and pregnancy. They were concerned that she'd develop a larger fibrocystic breast. There's also family history of breast cancer. They were concerned about menstrual hygiene. So some of the things that we've talked about to date. And they talked about if she developed breast, how would she ever be able to be fit with a wheelchair harness? So there were a lot of concerns about what a woman's body would be like. So the question, I like to think about with this whole protocol is what is the problem that we're trying to treat and is it medical or is it social? So the medical problem that was identified was her premature puberty. And indeed, if you look at the protocol, would her growth plates have closed early anyway? How much, were we preventing further growth? But in the Gunther Dekema paper, they acknowledged that it was clear that that onset of puberty had aroused a lot of parental fears for her future and that they were very afraid that they would not be able to continue to care for her at home. They also acknowledged that there really wasn't a direct experience with high dose estrogen treatment in young children. This was all being extrapolated from growth attenuation treatment for constitutionally tall girls that was tried in the 1950s when it was socially disadvantageous to be too tall. So they were guessing in terms of what the side effects might be in constitutionally tall girls, nausea, headache, weight gain, mild virtually never reason for discontinuing treatment, hyperprolactinemia being reported but of no clinical significance and resolves after treatment. So that's what they knew at that point. They did acknowledge that the most significant safety concern would be the risk of a deep vein thrombosis and they concluded that parents should be made aware of the risk and uncertainties of a novel untested medical intervention. So those are the medical facts. Let's look at the social facts. Ashley's parents were two professional parents. They had two other siblings without disabilities and they had plenty of financial resources. So resources were not an issue and she'd been cared for at home since birth. So when you stop and think about stakeholders, you've got Ashley but you've got other young girls and actually young boys with developmental and cognitive disabilities. You've got Ashley parents and the issues of other caregiving family members. You've got the medical team and you've got actually the bioethics folks who are oftentimes consulted regarding Ashley questions. If you look at this issue from the standpoint of Ashley, there's a concern about the medical treatment of people with intellectual and developmental disabilities. You know, the focus on normalization or trying treatments that have not been studied like prefrontal lobotomies. That's not for intellectual disabilities but people with disabilities in general. Concerns about the ability to accurately prognosticate about her future development. The fact that they thought she had a mental age of three months was used in the rationale and how do we come up with that and how do we know whether there's gonna be any future changes or development as she ages? How sure are we? And then to acknowledge that people with disabilities may have interest apart from others including family members but there's also this interleakage and that's part of what I think we heard from Mary. You know, you can't completely separate the wellbeing of a disabled child from the parents. But at the end of the day, Ashley could not speak for herself and this perception of her quality of life is not something that she could have pine on. So the caregiving family members. You know, we don't have great social supports for parents who are doing the bulk of caregiving for extensively disabled children and it's true, reliable attending care, high quality community based programs are not the norm particularly for people who live in the Medicaid space. We do assume that parents are in the best interest to make decisions, best interest decisions on behalf of their children and the family is undoubtedly disproportionately affected by the decisions for Ashley. And families also have been acknowledged not to own their children. So we have set limits socially in terms of what decisions parents can and cannot make on behalf of their children like blood transfusions if they are Jehovah's Witness, Christian science parents who want to withhold antibiotics. You know, we do allow children to grow up to be able to make decisions on their own behalf. So where are those limits in terms of decisions for kids with disabilities? I think we're much more likely to intervene now if a child is born with Down syndrome and the parents want to refuse a simple life sustaining treatment for instance. So there's some social norms, cultural norms regarding that. What I found particularly interesting as I explored the parents blog is something that wasn't explicitly said but came up a couple of ways on the blog. The parents said given Ashley's mental age, a nine and a half year old body is more appropriate and dignified than a fully grown female body. It's like, huh, that's interesting. And then you see this other posting of George Borsky that the treatments will endow her with a body that more closely matches her cognitive status both in terms of her physical size and bodily function. The estrogen treatment is not what's grotesque, is having a fully grown infertile woman endowed with the mind of a baby. Now I think that was really interesting and it wasn't something that was explicitly talked about as part of the rationale for the growth attenuation treatment. Art Kaplan picked up on that though and he ended up writing about the Peter Pan treatment and this desire to freeze people with intellectual disabilities into time as children. So where do we look at this as healthcare professionals? Well, I think we're not well equipped to work with issues of disability and how are we working with the families around exploring their fears which are undoubtedly going to occur. We oftentimes are gonna have limited evidence to guide decisions and how can we accurately prognosticate what the future holds for children like Ashley. We do know that the literature on underestimating cognitive abilities of people with intellectual and developmental disabilities is fairly robust, we're not very good at estimating cognitive capacity at early ages. And then there's concern about disability bias. What do people who are nondisabled understand about the quality of life of people with disability? We're always as health professionals gonna have to weigh treatment risk and benefits. So you've got your institutional ethics committees and in Ashley's case they were advisory, they were multidisciplinary, there were concerns raised about the transparency and the stakeholder representation and you had disability activist group like not dead yet, feeling that the ethics committee didn't end run around her constitutional rights because there was no port oversight in terms of the decision to have sterilization. So they convened, they ruled in favor of the parents, they said that request for growth attenuation was ethically, and hysterectomy were ethically appropriate and that the parents were the appropriate decision makers. Again, when the article came out and this came to light, there was a huge outcry particularly from disability advocacy organizations in the Washington Protection and Advocacy System weighed in and they said that the sterilization portion was in violation of Washington state law and they noted in the report that there should be a court order whether it was done for the purposes of sterilization or not, it's still a hysterectomy and in the end, the ruling said that actual growth attenuation treatments require a court order as well as protection and advocacy notification now in Washington state and the third ruling was that there should be somebody who's representing the interest of Ashley or disability rights perspective when ethics committees are hearing these cases. So I think that the ethics issues from Ashley are still out there, there's still many perspectives on this but I think it's important to recognize that the interest of surrogate decision makers may be at odds with the individual in question that quality of life is going to be prone to bias and social values and I like Mark, I had to pull something about quality of life and having surrogates try to imagine quality of life decisions based upon third parties. I think it's interesting that this was not framed as something that needed an IRB or research because they were very clear that this is untested. Should this be in the realm of research if we're gonna go down that path and be able to collect information and data? I did wanna, I tried to count where ethicists are on this issue, Doug Deacon, Norm Foss, Peter Singer have all written in favor of it. I think Lainey Ross, I'm sorry she's not here, I think she would be a maybe and then you've got John Lantos and there's a really great debate between John Lantos and Norm Foss on this issue, Art Kaplan and then really Eva Catté who has a philosopher, ethicist who has a daughter with severe brain injury who's written about this. So you've got a number of organizations and advocacy organizations that have taken a very strong stance against growth attenuation. Treatment, New York Times picked this up last year. How many of these do we have? Well again, they're happening not necessarily where we can track them but the New York Times article thought somewhere around 65% of children have received this treatment to date. So I've got a list of articles in bibliography for people if they're interested in learning more but there's one that still might come and there is not a strong social consensus I think on the Ashley treatment. So more you can follow and learn but that's a brief introduction. So again, I'd like to thank Mary for joining us today and happy to entertain any final thoughts or questions.