Interviewer: Jenn Harmless, Assistant: Matthew Koch
Photographer: Reiner Riantan
Photo Editor: Maggie Bui
(Trigger Warning: This interview includes conversation about sexual abuse, emotional manipulation, and bullying.)
First of all: Why do you want to be represented as part of this project?
Two reasons. One, I think that the power of your voice is one of your best advocacy tools. Being able to advocate for yourself. The ability to be heard in a positive way, makes your life better. The second reason is I was silent most of my life. I have always been a great advocate for my children, and the students I work with, which is how I know the first answer to be true. However, I failed miserably at advocating for myself. And I just think it’s time. I’m going to be 58 years old. And I think it’s just time.
I can see how it could be easier to try to advocate for others. Because they are external from you, and you don’t have to be as vulnerable to put yourself in a situation…
I think vulnerable is a good word for that…
Where you feel like you could be hurt.
For me, there was always the fear that if I put my head out, it’d get cut off. I’m from the generation where that happened. It happened to me several times. I was fired from a lot of jobs, and I was ridiculed or told that I was weird or didn’t fit in a lot of times. What would always upset me was they would always use words like, “you don’t fit in, you’re not a part of the team.” “We just don’t think this is a good fit for you.” Those kinds of words.
Part of the problem, I know this, was that I never disclosed. But at the same time I think that illustrates how even today where there’s more awareness and more understanding of neuro-diversity, there’s still a lot of intolerance for it.
I’m just looking back, and it seems like the words that they used, as they were firing you, those seem like the most humanly, socially, psychologically damaging words. Because we are so ingrained with wanting to be part of a team, wanting to be part of a group, wanting to be accepted…
When you are on the spectrum there is such a feeling of isolation anyway. When you have the cognitive abilities to understand you’re different, and to be aware of your difference, but not necessarily understand how to transition to that sense of normalcy, to struggle with that, I think that to some extent that makes it harder. If you’re blissfully ignorant, so to speak, you can go on with your life. And I’m not saying that the stigma doesn’t exist for that, but for me, and this is one of the reasons that I wanted to do this, is I remember the words. I remember the looks. I remember the way I was treated. And that stays with you.
Thank you, thank you again so much for opening up about this.
Well, like I said, I wanted to do this for a variety of reasons, but I’m also trying to be a good role model to the students.
Yeah, it takes a lot of courage.
I know you answered some of this in the previous question, but just to clarify, how do you self-identify? You spoke about neural-diversity, maybe you could explain what means?
Ok. I view neural-diversity as the truth of the world. Pre-disposed social norms; I understand that a civil society seeks uniformity and normalcy in order for it to function. I understand that form a purely cognitive point of view. I’m disgustingly over well-educated by the way. (laughter) And I’m very well read. But that’s always been a coping mechanism of mine, to read. But anyway, I view neural-diversity as what the true existence of human nature to be. We all think and react and feel and conjugate in different ways and on different levels. There is no one set of DNA, so there should be no one set of neuro-typical makeup. And to view anything outside of neuro-typical is to me the same thing as saying anything outside of the normal DNA strand of humanity, and yet if you were to say, “We want to pass legislation that will combat DNA differences amongst our population,” the uproar that that would cause. And yet, there is legislation to combat neuro-diversity as being mental illness, as being a stigma, when in reality neural-diversity is just a part of humanity.
I feel like from the little bit of conversations we’ve had before, that we are on the same page, or at lease close to it. No one is ever going to understand another person 100% because we think in different ways and words mean different things, but thank you for clarifying that for anyone reading who isn’t familiar with neuro-diversity.
So, how would you like to be seen by society?
I’ve struggled my whole life with my own sense of identity, because I’ve had such an unusual upbringing. I was separated from my family of origin when I was ten. I was sent to live with my biological Mother. I had six siblings, and then suddenly I was an only child. I will never get the real story as to why that happened, because everyone involved in that decision is dead at this point. But I know I was different. I know that it was hard for them to understand why I reacted and did things the way I did. And I think that was the easiest solution for everyone. That action has been a part of my identity my whole life. That I was somehow not good enough to be accepted. And that sense of I am never going to be good enough has driven so much of my decisions the rest of my life. I wanted so hard to be good enough to be accepted. So, I would study and I would read and I would try to do everything as good as I possibly could. And then not understand why I wasn’t making the grade. And I can give you an example for that: When I was young I knew that I didn’t understand what people were saying when they said it. And it wasn’t that I didn’t understand the words, I didn’t understand the context; what they call hidden curriculum, what they call social cues. I never got that. So, my reaction to that was to read and study the dictionary. And I read the dictionary, believe it or not, I read the dictionary front to back. I studied the origin of words, where they came from and why they meant what they meant. I still am somewhat fascinated with “where does that word come from and why does it mean that?” I still tend to do that, but originally it was a way for me to figure out, “why don’t I understand what people are saying to me?” And I failed miserably at it. I can still remember times when I said things that were wildly inappropriate, but I didn’t know why. And I would go to my dictionary and I would look up the words and I would think, “well why was this word wrong?” So, my Asperger’s affected me in that way. But the other thing that affected me, which is the other half of the story is that when I was sent to live with my Mother, the man she was married to was a pedophile and a sexual abuser. And so, for the next eight years I was sexually abused.
And you were ten.
I was ten years old when I went to live there. I had no way of coping with that. I had no way of even understanding what was going on. My Mother didn’t protect me, all I knew was, “I can’t have any friends because if I invite anyone over he’s going to do the same thing to someone else.”
I couldn’t go see or visit anyone because he would follow me. And so I grew up with this idea of just constant fear and constant terror all the time. So in terms of what my identity was, what I grew up with, was this idea of I’m not good enough. I’m weird. And I’m always in danger. So, how do I combat that? And a lot of the decisions that I’ve made as an adult were in direct result of that, of that kind of identity. My driving, almost need, was to have my children. Because I wanted to be able to love children in way that was unconditional, in a way that was accepting, in a way that I had never had. So, it’s interesting, the relationship I have with my children. I love my children dearly, and I am so enormously proud of them because they are three exceptionally decent human beings. They truly are, they are good, decent human beings. And I say that not because of money or wealth or intellect or anything else, but because they are good, decent human beings.
I think that’s the most important thing.
Yeah, and a lot of that has been very healing to me over the years. But I’ve never been able to shake the identity that was formed because of those eight years I lived with my Mother.
Those are some of the most formative years.
One of the reasons why I finally decided to do this now was because when all of this was going on, my Mother was adamant about keeping it a secret. And she made me promise that I never tell anyone. That no one was allowed to know what went on in our household. And she’s been dead many years now, and I kept that promise. And whether that was good or bad, I would have never made such a request of my children or of any other person. But, and I know sometimes this sounds bizarre, but I did truly love my Mother. Even though she was not a good person.
I don’t think that sounds bizarre at all.
How do you think society sees you?
A strange person.
(lots of laughter)
You sound like you are proud of that? And I think that’s great. I prefer strange people, I think I’m a little bit strange myself…
It’s interesting that you say that, because two of my children are also on the spectrum, they have Asperger’s as well. My youngest son is neuro-typical, ok? So, imagine being the only neuro-typical in a household of people on the spectrum. And we used to have this saying amongst ourselves, it was like our inside joke, and we would say “you know, neuro-typicals are weird.”
Because to us they were! And I still say to my son sometimes, “you know, it must have been really hard for you growing up in our household.” And he goes, “not really.” But I see my Asperger’s in many ways as a gift. Because I am able to do certain things that a lot of people can’t do. My oldest son is the same way, he has amazing talents and amazing things that he can do. My daughter has an amazingly kind personality in which she is very accepting and very generous and very thoughtful of other people. Because that has been imprinted on her psyche, and if it had not been imprinted on her in such a way I don’t know that she would be that way. Although, I’d like to think that she would be because that’s who she is. I love art, I love music, I love expression. Look around my office.
I love this office by the way, this is great.
I have tried to use some of the characteristics that other people think are negative, to my advantage. And I really do think that some of those so-called disadvantages have actually been beneficial to me. The sensory aspect of Asperger’s; I’m very aware of sensory input, I’m very aware of texture, I’m very aware of that kind of thing. And so, I design and make these beautiful cloaks. I use that sense of “how does this stone feel?” “How does this fabric feel?” “How does it fit together?” I have always done that. It always used to confuse me a little bit. People would say, “I love your sense of style and the way you dress,” and I would think, “well I just wear what’s comfortable.” For me it’s all about the texture and what is on my skin, and so I tend to gravitate toward certain things. And then because I’m very visual, I have a certain sense of harmony and balance with color. And all that has come together in the way I design this renaissance clothing and these clothes that have been so enormously popular that I still keep waiting for the shoe to drop on that, you know? I keep waiting for someone to come up and say, “You’re really not that good.” (laughter)
But if one person does that and you’ve had all these other people who just love it, I mean I know how hard it is…
Then I would perseverate on it and I would worry…
Yeah, I know how it is to hear the one negative thing.
The other thing that I find very beneficial is after many years of education, many years of study, I can totally recognize this now; the way I conjugate, the way I that I understand things is that I have the ability to see pattern, to see pattern and sequence in such a way that other people don’t always see. It jumps out at me. And I have a certain, people say I have like a Yin Yang sense of balance in my life and in the way I do things. The way I dress, the way I … And I said, “Well that’s just a matter of seeing the pattern.”
Yeah, yeah, and to you that’s…
To me that’s just the way my brain works. So, I think instead of saying, “oh, they’re locked into this one way of seeing things,” I happen to think that that sense of pattern and symmetry is a great benefit to me. It makes me a hell of a scrabble player.
I can look at a jumble of letters; seven, ten letters, random letters, and instantly see the way they can fit together in patterns to form words. It’s to the point where it’s hard for me to find people to play scrabble with. (more laughter)
I’m gonna send you a Words With Friends request…
But that view of my own abilities was not always present with myself. That actually developed because of my advocacy for my kids and the students I work with.
That’s fantastic, that through helping others you were able to at least start working on that more positive view of yourself.
But I still have that “I’m not good enough.” Like I said, that’s just such a part of my identity because of my early years, and I struggle with that.
Yeah, it seems like you’ve at least found some healing.
That really, and good drugs. (more laughter) I will be honest, I’m on a lot of medications. A lot of therapy.
And that’s what, we do what we need to do, to cope.
So, have your actions or words ever been misinterpreted? Either by people that are different, like more neuro-typical, or even other people with Asperger’s or Autism?
Not with people within the spectrum. I don’t know if this is appropriate to say or not, but I really do think that when you have Asperger’s you have like a radar for other Apsies, because it’s as if we have a certain language, or a certain way of communicating that makes sense to us. You know, we’re so literal in the way that we think, we’re so literal in the way that we talk to each other, so when we talk to each other it’s like, “well of course, that is a totally logical response that you just gave.” And so we don’t bat an eye at each other. My son can say something to me, I can say something to my son or to my daughter-in-law who totally gets him, and no one looks at me like, “what?” To give you an example, I was at a convention with my daughter. And convention halls being convention halls where they are all over everywhere, and I’m slightly overweight and my knees hurt and so I don’t like to stand or walk that much. So anyway, I had a chair with me. And I was carrying my chair with me in order to sit on it when we would stop. Well, at one point during the convention a security person came up to me and goes, “what are you doing with that chair?” And I looked at him and I said, “I’m sitting in it.” Which was, to me … (laughter). The only reason why I knew that was not the correct response was because of the look he gave me. And I realized, “Oh that’s the question you were asking me.” (more laughter)
So I think when I communicate with the students here, with other people on the spectrum, I don’t think I have that difficult of a time. It’s when I am with neuro-typical people who don’t understand that I am very literal, that I am very direct, and I will say things as I am experiencing them. But I have learned that the questions they ask are not really the questions they’re asking. And the only way I know that is when they react to me in the way they do when I give them the answer. So as an adult, I’ve learned to ask the question, “was that your question? Did that answer your question? Did that make sense?” That kind of thing.
Yeah, right right.
The example that I gave you of the man asking me why am I sitting in this chair, is a somewhat benign example. But more hurtful situations have been when people have not understood why I have reacted or acted in the way I do. And, “why are you that way?!” “Why are you doing that?” Kind of thing. And I realized by the tone of voice they’re not asking me to give the response of, “I’m doing this because…” It’s an accusation. It is a judgement. And I don’t know how to respond to it. And even as an adult, even with everything that I’ve studied, and tried to understand about the concepts of bullying, I still cannot handle being bullied. I do not know how to respond to that. I know cognitively that they say, well this is how you should handle bullying, and this is what the case studies say, this is what the psychologists and the therapists say. But in the moment when it happens to me, I never know how to handle it. And that has caused me a lot of trouble.
Yeah, I would not know how to respond to that either, and I’ve read a lot about what to do to fix this problem. I think people sort of assume that people have good intentions. And then I think when a person proves that wrong by intentionally doing something harmful, I think it’s difficult to grasp that.
I just do not understand bullying.
When there’s communication like that, it sort of short-circuits me at first. Where it’s just like, “you’re not communicating to communicate, you’re communicating for some ulterior motive, and damn if I can figure out what you’re trying to do,” at first.
I understand that a large part of bullying is about power. I understand that. And I understand that a lot of the bullying that took place was about power. And incidentally, children and teenagers in school are not the sole perpetrators of bullying. When I was in the school system I was the victim of a lot of adult bullying. Which is why I got fired. But I’m not gonna go there. But anyway, I understand that to some extent, that that’s really what’s going on with bullying, I just don’t know how to respond to it.
How do you want to improve your community? And that could be the community here at CIP, or Bloomington, or any community you feel like you could work to improve?
Wow. If I could just wave a magic wand, if I could wave a magic wand, we would all live in the land of Star Trek. Where there is no money, and everyone has the resources because everyone has a replicator. And everyone can study what they need to improve themselves in any capacity that they need to do it.
We would be right there with you.
We would all live in the land of Star Trek, but...
We’d still have communications issues because we gotta fill 45 minutes.
But, I think that in order for a person to remain sane in their attempt to create a better world for themselves, they have to take it in small increments. When I was younger I used to just rage against what I considered to be injustice. I would rage when someone accused me of something that was a lie, and they knew it was a lie. And I knew it was a lie. But I couldn’t do anything about it. It would drive me crazy.
I would become so angry at the way people would treat each other. And I would think, “I have to change this.”
But you can’t do that, you can’t change society, you can’t change people as in multiple people’s perspective. You can only do it one person at a time, one step at a time. It’s taken me a lot of years to figure that out. Because I would carry so much of it with me, when I was younger. I got cancer, several years ago, I got colon cancer, and one of the things that happened as a result of that was, it really changed my perspective on how I address things. I didn’t want to die angry. I don’t want to die angry. I don’t want to die in a constant state of rage at the world. I want to have some sense of peace in my life, because most of my life I was not at peace. So, it’s not that I’ve given up on things. It’s not that I don’t want to fight to make the world a better place. It’s just that I realize now I can only do it in a small way. And hopefully like the ripples in a pond, my one small way will grow. But my own initial action is going to be small. So, I work with one student and I make one cloak at a time. I try to do it that way.
I personally think that’s the most effective way.
Because otherwise I would go crazy, and I would die angry.
Yeah, I think all of those supposedly small things, I think those add up very quickly. To become much bigger things.
Which is why I’m doing this project.
That’s why we’re doing it, too.
I was actually just thinking about the invocation of Passover. What was it they were saying? It’s not yours to finish the work, but it’s also not yours to not pick it up? Or something along those lines. You’re not going to be able to do everything.
You’re not obligated to finish the work, but you are obligated to begin it. I think is what it was.
You can’t do everything, but you can do something.
How do you feel about the state of things right now?
Worried. Not quite fearful, but pretty close. I’m worried about the rising tide of intolerance. I’m worried about the idea that the only way to keep ourselves safe is to isolate ourselves in a group of homogenized normalcy.
Whether it’s passing legislation that eliminates public schools, whether it’s building a wall, whether it is keeping a town “culturally pure”, I’ve heard that term. I worry about this. Because I think that that kind of thinking actually endangers us as a species. Inbreeding causes a lot of trouble, genetically. A lot of genetic problems occur because of inbreeding. So if we start culturally inbreeding ourselves it’s going to create problems. To draw an analogy.
My way of combatting that is to make a point of telling people that, “wow, you have different DNA from me? That’s really cool!” Most of the time it goes over their head, but…
Yeah, I like that though.
How do you feel about the future?
I’m more at peace with it than I used to be. I think that’s because of my age, I’m 58. Every once in a while, I think oh my god in two years I’ll be 60. I’m more at peace with it than I used to be because my children are now grown adults. And they’re established, and they each have life partners that they love dearly. For me, that was my job. I raised three children to be happy, compassionate people.
And I think especially right now that’s what we need the most. Happy and compassionate people.
So, I’m less anxious about it than I used to be. Everybody has a bucket list, I know. I’m not trying to be morbid or anything, I do have a lot of rather serious health issues, and I realize I’m not going to live to a hundred. I could get cancer again and I could die in six months. So now is my house clean? No. (laugher)
Does it really matter?
Well that would bother me, but I’m less worried about it than I used to be. I’ve been in a really good stable relationship with a wonderful man who has been my partner for over years now.
Wow, that’s great.
Who truly truly loves me, and that is such an important part of my identity, that I have someone who loves me and accepts me. He told me a few months ago, it was such a significant thing, and he didn’t even realize how significant it was. We were commenting about, I was analyzing something. I do that, I tend to do that, where I look at something and I just automatically begin to analyze it and look for the patterns. And he looked at me and he goes, “you know, I fell in love with you for your heart, not your big brain.” And I just looked at him, and I just immediately became quiet. Just, the impact of that was so enormous for me. I don’t think he realized how important that was to me.
Yeah, because all that time you were trying to be better and better and better.
My whole life has been a constant search of “will you accept me? Will you love me?” So that was pretty important. I’m actually more at peace now. I’m still worried about the world, and I carry that with me. But in terms of my own life, I’m much more at peace than I used to be.
That’s really good. I’m really glad to hear that.
So last one, well maybe one or two. Based on everything we’ve talked about, if you had one message to say to the world, what would that message be?
In my mind all these various quotes are racing through it. I’m thinking of the words that other people have used that so effectively answer that question. But I don’t want to sound trite or inane. So I think what I would say is
Do no harm. Be blessed and do no harm.
I like that.
OK we can do one more.
What do you think your biggest contribution has been in the world, and what are you most proud of? And I think I already know the answer to that…
Yeah, that’s what it sounds like.
My children have been, I think, hands down my greatest accomplishment.