Arlene Mayerson on the Thom Hartmann Show

Air America Radio
January 12, 2007


Thom Hartmann (TH): Arlene Mayerson is with us. She is an attorney, the directing attorney with the Disability Rights Education and Defense Fund. Arlene welcome.

Arlene Mayerson (AM): Thank you.

TH: I brought up on this program a week or so ago when the story first hit the paper, the story of a young girl, a nine year old I believe she is now, in Seattle, developmentally disabled whose parents had her undergo a hysterectomy and mastectomy and gave her hormones to stunt her growth so as to keep her small as she became geologically older, physiologically older and put forward my belief that this was a good thing both for her and her parents. Your organization,, the website, the Disability Rights Education and Defense Fund took strong objection to that and posted a, or not just my saying that, but anybody saying that but I got a letter specifically about my saying it, and posted a note over on your website which our listeners can read. So I thought it would be good if we had a conversation about this. Can you tell me, what’s your position on this?

AM: I think it really boils down to one simple question: Is Ashley a nine year old girl human? And if Ashley is human then she has integrity of her body and autonomy of her body and no one can decide that they want her shorter that they want to stunt her growth that they don’t want her to develop into a woman. These are all natural processes that happen to every individual. There is absolutely no debate in this case that Ashley needed any medical intervention for a medical health related reason. She didn’t have a hysterectomy because she had cancer. She didn’t have her breast buds removed because she had some kind of disease. She was given these procedures simply because she is a mentally retarded, physically disabled child. She is not being given the most basic right, which is to grow up. And the idea that her parents and these websites call her a "Pillow Angel" really epitomizes the idea that she has been objectified as something other than human, something that can be molded into someone else’s image. She’s a person and I think that there’s no question that we don’t do these things to children that we consider to be humans. I think it really raises a fundamental question &

TH: But we do interrupt natural processes and we do reorganize the bodies of our children and ourselves. I mean growing fingernails and hair for example, simple example, correcting for vision, using prosthetics, my wife’s grandmother was disabled with polio, I mean there are many ways we deal with disability that are non-normal.

AM: Let me step backwards to say that what you’re talking is an interesting kind of reversal of all the tenets of the disability rights movement. The disability rights movement are the first to say, yes of course you can use prosthetics, you can use wheelchairs you can use all the things that are available to Ashley’s parents right now to help someone have a more productive, independent life. But that’s very different than saying you take something away from someone. You give them massive surgery, you do invasive surgery that is painful that cannot be altered. For what? I think it is useful to go through the reasons that they are giving and every single reason it doesn’t make any sense.

TH: Well the ‘for what’ is that she is so profoundly retarded that she has not yet reached, at the age of nine, the developmental stage where she can sit up. And, if her body remains 70, 80, 90 pounds instead of becoming 150 pounds, she is less likely to have bed sores, it will be easier for her to be handled and treated by her parents, so as they age they can continue to be care providers for her rather than having to institutionalize her.

AM: From a logical point of view lets go through each of those reasons. First of all, there is no doubt in anyone’s mind, by the way and we should have set it aside, that her parents love her. No question about that.

TH: Yes.

AM: There are people with disabilities who are normal size who have grown to the size they would have grown to that are, that join their families on vacations, that spend time in the family room with the rest of the family, that do all the things that they think that these drastic measures to alter her size require. There are lots and lots of people in this situation. One of these things that I question and feel quite concerned about is to what extent Ashley and her parents and her doctors were exposed to these people. I know from the work that we do, I work with literally hundreds of parents who are in the situation of Ashley and they see their children as individuals with autonomy and you know what, reaching a developmental age to sit up doesn’t necessarily follow, doesn’t necessarily say anything about the person. I mean, I know people who are my colleagues that I argue against with in court who cannot sit up.

TH: But this is not because of physical disability this is because of the development of her brain.

AM: She has both physical and mental disabilities. There are a lot of people who have both physical and mental disabilities and I think that &

TH: We’re talking about a child who functionally has no cognitive function at all.

AM: First of all, I absolutely don’t think one can say that. On one hand they’re saying she smiles, she likes this person, she doesn’t like that person, she likes this food she doesn’t like that food. She has desires she has things that she doesn’t like, she enjoys spending time with the family. On the other hand, she has absolutely no cognition. You know what that says to me, it’s a symbol for "she is not human." She is a human being. She may not have the same intelligence that you or I have, but she has her own identity. She is Ashley. She is not just the embodiment of a no brain, or of a low intelligence. She’s Ashley, she’s a person.

TH: So in your opinion her integrity as a person should be respected even if that means she becomes institutionalized rather than remaining with her parents, as they get older and it is more difficult to handle an adult.

AM: I think it’s an absolutely false dilemma and a sad one. I’ve been working myself, and I certainly have many great predecessors, myself I have been working in the disability rights movement for 25 years. Honestly, we are living in America; those are not the options that should be posed. I mean to say that we either, it is a false dilemma that has been posed. We say either that we do massive surgeries that no one would choose as elective surgeries, okay.

TH: I think I would actually. Arlene, just let me just challenge that point. Just myself, if I knew that I would, that my ability to be comfortable as I age could be modified by surgery and everything else is pretty much out of my control. I would choose that. If I was Ashley, I would choose to go through what Ashley went through.

AM: You don’t, you know what &

TH: I know I can’t know that.

AM: It is such a false dilemma that has been posed. This idea that we’re going to do these massive operations on her, massive hormone therapy because we think she might be more comfortable. I mean &

TH: And happier.

AM: There are people who are larger than 5’6" who have the situation that Ashley has who are comfortable, who have families and who are included in things and they are not uncomfortable. It is a false dilemma that has been posed to say that let’s do this to the person because otherwise they might have to be institutionalized raises the question – I don’t know how much time we have left – but I think it’s an important thing at least from Disability Rights Education and Defense Fund’s point of view is to not just look at this as one sensationalized story, but to look at it as an opportunity to really examine what is available to help parents. We’re the first ones, we represent hundreds and hundreds of parents, we’re the first ones to say, "Absolutely, there needs to be more supports."

TH: So you’re saying, well the point of your article was "fix the system, not the person," but it raises the question &

AM: Right, this is not just one sensationalized story. This is a situation where people, most people love their children, most people love their disabled children. Most people with severely disabled children do need assistance and do need supports. But to say, well, and I think this family actually has the resources to get those. But, to say let’s not go there, but let’s start talking about how we can alter the person, severely alter the person. We’re not talking about you know, one thing here or there. For instance, let me give you two examples . . .

TH: Arlene, we have to take a break. You want to stick around and take one or two calls from our listeners?

AM: Sure.

TH: Okay, great. Thank you. We’re talking with Arlene Mayerson, she is the directing attorney of the Disability Rights Education and Defense Fund. If you want to read their statement on the Ashley case it’s over on their website. Our number 866-440-8466.

Commercial break.

TH: We’re talking with Arlene Mayerson, directing attorney for the Disability Rights Education and Defense Fund, Arlene, we have a couple of callers. We didn’t establish any ground rules with you in the beginning. I’m asking our callers not to beat up on you, or whatever if that’s okay. But before we go to the calls, and we only have about five minutes in this segment. Isn’t there, it seems to me that there is a parallel to the two sides of this argument with the abortion argument. And that is, that in the abortion argument there are some folks who say that from the moment of conception, from the moment of fertilization, it is now a person. Period, end of discussion. It is totally a black and white thing. Versus, the folks who see shades of gray which is the official and legal position of the United States, that at least up to the point of viability it is the choice of the mother whether or not to abort and past the point of viability it becomes an issue that the state can interfere with. Isn’t there an argument to be made that there’s a threshold, a cognitive threshold where the rights of the parents might supercede those of the child?

AM: That’s a great segway back to what I said as my very first sentence. I think the question is, right here, "is Ashley human?" If you answer the question "yes" then you have to be against everything that’s happened. If you answer the question, "no," then I think, if she’s not human, then yes, you can do all kinds of things with her because she is not human. But if she is human, and if people with severe cognitive disabilities are human, then they human dignity, human autonomy and human integrity.

TH: Linda in Madison, Wisconsin, you’re live with Arlene Mayerson.

Linda: Hello

TH: Hello, Linda.

Linda: Hi. I’m a mother, I’m sixty years old. I’ve got two daughters, one natural, she’s 30, and one 17, who I adopted. They’re both severely MR, they’ve both have trachs, they both have g-tubes. Jody is rated at about 3 months, Rachel’s probably at around 4 months. I’m also a nurse, and I work at Central Wisconsin Center for DD. We’ve had residents out there raped and pregnant. My daughters are both 70 pounds. I’m only 110 pounds myself. My kids are both very small. And no, I have not gotten them fixed but I would love to, but it’s against the law here. But my question is who is going to take care of these girls when they are pregnant? Who is going to explain to them that you are now in labor? Who is going to take care of the baby? Who is going to protect them when I no longer can? Because something like 70% of DD are sexually or physically abused. That’s my question.

TH: Thank you, Linda. Arlene.

AM: I’m glad that you brought that up because the example that I was going to use about how basically taking a shotgun to kill a flea or about what I said about no one would choose these as elective surgeries. We all know that there are less drastic ways to have birth control than removing someone’s uterus and ovaries. That’s just not a common way to have birth control is to have a hysterectomy. But a lot of people for a lot of reasons, a lot of disabled people for a lot of reasons, and other people shouldn’t get pregnant, don’t want to get pregnant and there’s ways to deal with that in less drastic way. But even most important, the thing that I thought was amazing about the doctors responding about why they gave a hysterectomy was because they want to relieve her of the possibility of menstrual cramps.

TH: Sure.

Linda: Let me &

AM: They’re giving a hysterectomy because of a possibility that she might have menstrual cramps. I suggest taking a couple of Advil at that point and seeing how that works first.

Linda: Let me address that. Both my girls are on a number of medications for seizures, spasticity and now you want me to add birth control, which is dangerous in itself. When my girls do have their menstrual period I do not know if they are in pain or not. I have to guess. I have to give them something.

AM: But you have to know & but you might not know &

Linda: But you don’t know &

AM: But you have to know that they’d be in pain from a hysterectomy.

Linda: Well they both had spine surgery, they both had hip surgery, muscle and tendons cut down. Should I have not done that because they would have been in pain?

AM: No. But I assume you did them because they were medically necessary.

Cross talk

Linda: We’re talking, we’re talking of a family’s rights to try to keep their child home. Do you have a handicapped child?

AM: I work with and am friends with many people with disabled children who are very much like Ashley. And yes they have kept them at home and yes they have to struggle and yes they need support. We are dedicated as an organization to making sure that people have the supports they need. But we do not think that you go in and medically experiment with human beings.

Linda: That is not experimentation.

AM: Yes it is, you said that &

Linda: It’s protection. You are protecting your child.

TH: This is the fundamental argument and we are certainly not going to resolve it here today. Linda, thank you very much for calling and for what you’re doing with your children. And, Arlene, thank you so much for being with us today and coming on and discussing this with us. I think we’ve given a lot of people a lot to think about.

AM: Again, if anyone wants to go on our website, it’s And I’m happy also to continue the conversation with Linda. We’re dedicated to getting the supports that families need and we are very much in support of families

TH: Thank you very much.