Written originally for my stint at Feministe at the beginning of July; been working on it bit by bit ever since, but suddenly it has become topical again.

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Part I: The Personal

Note: I’m going somewhere with this. Please keep your mind open as you read, because I will be coming back in Part II with a concept that may seem to conflict with your initial reading of Part I. Thanks.

Understanding my background is essential to understanding my understanding of these things. And so we go.

My brothers and sister, between them, share two diagnoses of bipolar disorder, one of schizophrenia, two of those with psychosis, and all three have severe depression and/or generalized anxiety disorder. That is only what has been diagnosed by mental health professionals — D* was only diagnosed by way of being taken to prison and has not seen a doctor otherwise in decades.

My mother never saw a mental health professional and never will, but she shares most of the symptoms my siblings display, and my own mental health professionals have agreed with me that if there is a diagnosis to give her (with all requisite caveats), it would be borderline personality disorder.

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1.

My brother D* had the worst situation of the family. He was the first to go to jail: when he was taken to court for some sort of licensing issue, he refused to give his name. Wouldn’t speak. And so they put him in jail. And he stayed there for eight months before relenting so that he could just go home.

How long would you stay in jail for a principle?

My family was religious, each member to varying degrees — but their idea of religiosity was, to say the least, a somewhat unique form of the faith practiced by their fellow churchgoers. D* was probably the least religious of any of us. But he still had his ideas.

According to him, the “self” is a thing, not a person. When you refer to your self, you are not referring to you the person, but a thing that the government created so that they could have control over you. Because in Genesis, God gave man dominion over all things of the earth, but not over man. So the government devised the “self” so that they could claim control over people.

According to him, the reason we have a “driver license” instead of a “drivers license” is because in actuality there is only one person, and we are all franchised out from that person, which the government created sometime in the nineteenth century and none of us has been a person ever since. This is called “novation.”

Also, we are all “resident aliens,” because the state owns all land, meaning we are not residents but aliens on the very land we reside on.

Also, when you write your name in all capital letters, that is representative of the “self” that the government owns. Which is why names are printed in all-capitals on our birth certificates, so that the government has official control over you. So never, ever print your name in all capitals, because that means you are officially giving your “self” over to the government, and this may even be the Mark of the Beast.

It was that latter that probably got him in trouble with the court.

These were regular topics of conversation at family gatherings. I remember the Thanksgiving dinner when he gave me my first lecture on novation. I was seven or eight years old, I think. He grabbed a piece of copy paper and drew a diagram for me. I don’t know what else to say but that the diagram showed the inner workings of a mind that works in a completely different way. It wasn’t nonsense. It had logic to it, but it was its own logic — not the logic most of you are used to using.

These ideas were not a hobby for D*; they were his world view, they were primary, his truest beliefs, and he lived his life according to them.

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2.

My oldest brother, G*, was born in the late 1950s, when my mother was sixteen. She was publicly kicked out of her church and her parents became hostile, leaving her with one person to rely on — her boyfriend, the father of her child. He became my mother’s first husband. Thus began her adult life. D* would come along a few years later, then my sister, whom I called Sissie.

Her husband was extremely abusive. He had very sketchy friends and apparently some involvement in certain anti-government movements in Canada. He would drug my mother and invite his friends over. He beat her to near-death a couple of times — then went into the children’s rooms, where they were aware something bad was going wrong, and calmly informed them that if they tried to help their mother, he would kill them.

My brothers have related to me the time that D* chased G* down in the back yard with a butcher’s knife — angrily — with full intent to kill him — he had feelings of inferiority under his brother. Their father broke it up when D* was on top of G*, gave them both a good beating and a good threat or two. This is how my siblings grew up.

When my brothers were in their teenage years, he died in a motorcycle crash. My sister was a bit younger, and she has recalled crying in class when the news was brought to her. But all three of them agree now that they’re glad it happened. It freed the family.

I would come along much later, by a different father, who gave my mother the choice of getting an abortion or hitting the road. She hit the road, had me at age 43, and went on to raise me alone.

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3.

I grew up in a toxic family dynamic. That may be the most respectful way to describe it.

I could write a novel’s worth about my relationship with my mother. It was one of extreme emotional dependence — both ways when I was a young child — only one way when I grew older and tried to stake out small bits of independence. The more independent I became, the more intense her emotional stronghold on me, the more insidious her tactics to keep me in the reins.

My relationship with my mother was quite happy until, maybe, age twelve or so. She was sweet and caring and supportive. She encouraged me in my talents, gave me plenty of hugs and kisses, shared laughter with me… I could relate with her, I could talk with her, I could play and have fun with her.

But when I approached that age — when I began to explore my own identity, when I pulled away from her a mere inch — suddenly I felt the grip tighten — and that hug became a hold. And there was less playing, less fun. Suddenly — in very subtle ways — she began to turn on me.

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4.

There may have been a time when my relationship with my mother was one of friends. But my relationship with my siblings has always been one of enemies.

My siblings were all a generation older than I, married, with children. G* and D* lived with their respective families in the two towns I grew up in, in the Central Valley. My sister lived on the northern border of Oregon, near Portland — where my mother was living when I was conceived. We didn’t get to see her family very often; once a year when we were lucky.

I was always the outsider. My brothers and sister grew up together. In a totally different world. They were decades older. Different life stages. They had come a long way, and I was just arriving on the scene.

A toxic dynamic developed, where I was the young, stupid, spoiled, care-free little thing that was getting off too easy in life. And this threatened them. They went through hell as children, but here they were, struggling, but making a life for themselves. And I was their little sister. But my life was totally divorced from theirs, a totally different realm. One they feared was rising above them.

So they had to tear me down.

And that’s what I experienced growing up. As young as I can remember. I would be trying to disappear into the couch at G*’s house as my brothers and mother commiserated about how totally wrong I was, lectured me on how things really were, agreed that I was just too young and I would come to think of things their way when I got older.

Or they would tease me about my body.

Or they would respond to a positive development in my life — an award or good grade at school, for example — by admonishing me in all the ways I was failing now or could fail in the future.

Or I would be subject to general teasing — the kind that probably goes on in most families — but with a sharp edge, a hostility to it. A tone that made me perpetually uneasy, self-conscious, doubtful and critical of myself.

Whatever it was, ultimately, there was something wrong with me.

These were my authority figures. They weren’t just casually distrusting me. They were engaging in a coordinated campaign to make sure I understood that my own thoughts, opinions, and experiences didn’t matter, weren’t trustworthy, weren’t reasonable; that I would eventually become just like them, regardless what I thought or felt right then; that I was ultimately unimportant and unlovable, that I was a nobody, that I would go nowhere in life.

They loved me. I know they did. But they also hated me. There is simply no way around it. I was devastated when I first really came to terms with that. My own brothers and sister hated me.

And all the while, they were telling me: This is love. And this is the only love you’re ever going to get.

What do you think that’s going to do to a child?

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5.

My mother’s social life followed a regular, recognizable pattern.

She would make some friends. At church, doing Avon, whatever. Then over the next couple years (sometimes months), she would grow gradually closer to them — just like any ol’ person does.

But then she would hit a certain point, when those friends were approaching a closeness, when they were moving from casual friends to intimate friends.

And once they hit that point, her attitudes spun a complete 180. She began to regard them with suspicion. She would identify all these little ways, all of a sudden, that the very things she appreciated before, were signs of something sinister. If she missed a few church services and someone checked in to see how she was doing — it wasn’t a caring friend trying to help out someone sie cared about — it was a conspiracy of some sort; they were trying to dig information, to squeeze their way in, to find some way to ruin her life. If she misplaced some item at home, those people must have broken in while she was gone and taken it — anything from a garage key to a dish to a piece of scrap paper.

She became hostile. She became… resentful. She thought that these people were getting together to make her life difficult. The conspiracy would begin to grow, become more complicated by the day.

She’d begin to retreat. Stop going places. Avoid people as much as possible. No sense of trust anymore. Everyone is a potential conspirator. Everyone is an enemy.

And then — the final stage — she would move. Claim to have been “run out of town.” She would find somewhere new, where she wasn’t known — and start over.

And the whole process would begin again.

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6.

It was five or six years after D*’s ordeal in prison that G* began to take an interest in the same stuff. He started reading, and reading, and reading. And the more he read, the more passionate he became about it all.

At the time, my brothers were getting into this thing about “copyrighting” your name. I think they saw it as a way to take back possession of that “self” that the government owns. I would argue to no avail.

They decided to “copyright” their names. They each placed a classified ad in the local paper declaring their rights to their names. Declaring that this name now belonged to them, and any violation of their copyright would be punishable by some amount of money. They did some more reading, and decided each violation was worth $50,000.

A little while later, G*’s name ran in the local paper for some innocuous reason I can’t remember. Just a mention, like as a parent in a graduation or engagement announcement, or some sort of meaningless news brief.

G*’s idea of rectifying the situation meant going down to the courthouse and filing a form declaring that the District Attorney was in debt to him, to the tune of a quarter million dollars, for each of five mentions of his name in the newspaper, and placed a lien on her property.

This went unnoticed for some time, until the DA tried to sell her house and found this random man had placed a lien on the property. So she took him to court.

The court case was long and involved, because a buddy of his had tried the same thing and was being tried with him. There was investigation done into the groups and writings G* and his buddy were involved in. Second court systems that claimed to have authority over the government. The buddy was trying to sell cars without registrations because that was giving yourself over to the government. They accused him of being a terrorist. The prosecutor, in his closing statement, actually began to cry loudly in front of the jury, sniffed, then apologized, saying his son was in Fallujah right now and it’s because of these people (my brother and his buddy) that people like my son are dying for their country.

He was found guilty of all charges, including a felony conspiracy charge, and sentenced to fifteen days in prison and five years probation. His buddy got a couple years in prison.

Once he got out of prison, G* decided to go to a doctor. This is when he was referred to a few specialists, and he was diagnosed with schizophrenia, bipolar disorder, GAD and major depression. He was given a couple medications, one for his fibromyalgia pain and one for his mental condition. He tried them. But he came off them soon after — maybe a couple weeks.

That is the only time either of my brothers tried to seek help for their conditions. Didn’t last long – G* was soon back to his old self — distrustful of the doctors, very resistant to treatment. He is the one, after all, who dropped a very heavy metal object on his toe, breaking it, splitting the toenail so bad it fell right off, and getting a nasty infection to go with it — and absolutely refused to go to the hospital or even a walk-in doctor.

Then again, D* is the one who passed several kidney stones without ever seeing a doctor. He looked on the internet and found several “alternative” health sites that told him which foods to eat to “flush it out.” He followed the instructions, bearing a few months of extreme pain before finally passing them. Would not see a doctor.

Never in my lifetime has he willingly seen a medical professional. He is by far the most paranoid and most distrustful of authority in my family — why would he ever trust a doctor? They might be passing along information to — well, anyone. Either way, they are a threat far more than a help, so it would be downright dangerous for him to ever step in a medical office.

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Part II: The Political

Last week’s conversation in “Emails from my mother” saw many people with similar experiences. Many people who have family members with mental illness, and many people who experienced abuse from family members, and many who have experienced both.

There were, however, several disappointing turns the conversation took. And we really need to address those.

Mental illness is still widely misunderstood in our society. In popular conception, mental illness marks a person as dangerous, incommunicable, strange and weird, living in their own world, not a whole person, not the same kind of person. According to this conception, a mentally ill person has no control over their own thoughts. “The illness” controls them. Any unsavory actions are attributed to “the illness.”

There is also popular conception (which somewhat contradicts the above, but both are still commonly held together without second thought), that says that mental illness is a character flaw: that a person need only buck up, think positive, get some sun, stop being so negative, exercise, etc. and it will all just go away. The subtler, more “enlightened” form of this conception says that a mentally ill person just needs to attend therapy and get the right medication, and it will all just go away. As if it’s that easy.

As a society, we marginalize the mentally ill eagerly, without compunction. They’re scary, they’re dangerous, they’re just not like us, they need to be controlled, for their good and ours, because they are a threat to orderly society.

Except that we aren’t. People who are mentally ill are no more likely to commit violence than people who aren’t. The only factor which increased the risk of violence is substance abuse — a factor which also increases risk of violence in the non-mentally ill. And much stronger predictors of violence include being male, young, low income, recently unemployed and recently divorced or separated. For what stigma they still may face, do we assign anywhere near the same amount of “danger” to divorcees and the unemployed as we do to the mentally ill? And yet….

And yet: people with mental illness are twice as likely to be the victims of violence. Does anyone even pretend to pay attention to that?

And why might that be? Well, when people associate mentall illness with violence, they are

significantly more likely to report attitudes related to fear and dangerousness, to endorse services that coerced persons into treatment and treated them in segregated areas, to avoid persons with mental illness in social situations, and to be reluctant to help persons with mental illness.

Huh. Imagine that. People who are told that already-marginalized people are a danger to them and all that they hold dear will begin to have ideas that those marginalized folk need to be controlled, avoided, medicated, segregated…

And this attitude, this automatic assumption that mental illness makes a person violent and dangerous, is so pervasive across our society, and so deeply-held — and yet so wrong, so not true.

Don’t you think, perhaps, then, many of our other assumptions about mental illness — no matter how deeply-held, how widely-agreed-upon — might also be wrong?…

Like that they lack empathy or reasoning ability?

Or… that abuse and mental illness can be safely conflated?

I’m not even going to bother linking specific comments for that one, because there were so many, and I participated in it too. I made the same mistake. I had suffered abuse from someone with a mental illness, and I failed to realize that there were two things going on there, two different things, and that one is not an inevitable result of the other.

Try reading my stories above again. Do you see the distinction? I told stories of growing up as a family member of people with mental illness, and I told stories of growing up abused. Did you see the two different things going on when you first read them? Or did you think I was talking about the same thing the whole time?

I was called out on my next post for writing as though the mentally ill, and people with disabilities in general, were a separate group, off there, somewhere away from all of “us.”

As though people with mental health conditions are not scattered throughout the entire population. As though my best friends don’t have these conditions. As though I don’t have them! And I do!… And I even made a specific plea in that very post for people with conditions like mine to stop thinking of themselves as separate from the people the public thinks of when they hear the words “mentally ill”!

We are all subject to these attitudes, and they reach deep into the core of our world views. It takes careful, concerted effort to undo the damage done by bias, hostility and ignorance. And even with that effort, oftentimes these attitudes remain — they are woven so deeply we don’t even know that they’re there. Even when we’re looking for them.

So we need to keep a sharp eye.

One very popular idea about mental illness, which was shown throughout the “Emails” thread, is that one can separate out “the illness” from “the person” — and that any unsavory actions or behaviors can be attributed to “the illness.” That makes it OK, because it’s not the actual person inside making those decisions to act in those ways, but some vague, faceless, soulless thing that infects them.

This, of course, is a tactic to remove agency from the mentally ill person. A family member may latch onto this idea as a form of comfort, a way to identify with “the real person” inside their loved one’s body, which is separate from “the illness” which is what did things that harmed them.

But this idea exists for a purpose, and its purpose is not comfort to those of us who struggle with our families. Its purpose is to aid control of the mentally ill population. Because when their agency is removed, it makes it much easier to impose things on them, to coerce them into things, which we would never tolerate on the healthy population.

When agency is removed from a person, it makes us less likely to identify with that person as a fellow human being. We are less likely to consider how something may affect them as a human being, with a family and a community and a life of their own, which might be affected in so many ways by this restriction or that proposal.

When agency is removed, we feel much safer making decisions for someone else.

But persons with mental illness still have agency. They are whole persons, not diminished by their difference. Their illness is not simply a disruptive module overlaid on a “normal” person’s brain. It is their brain. It simply works in a way that a normal person’s brain doesn’t.

A circle is not a square with the corners cut off. It’s an entirely different shape.

And this difference is not inherently detrimental. I know a lot of people really had trouble with this concept in the “Language” thread. And it is such an alien concept to most of the world that I know people will continue to have trouble with it. But the fact remains: Difference is not inherently bad. A different body, a different brain (which, really, is a part of the body) — these things are not inherently bad just because they do not conform to the established social norm.

Please make note, there, of the key word “inherently.” Because a particular difference in body or mind might make that person’s life difficult in certain ways. Many of these are attributable not to the person and their difference itself, but to the fact that society fails to prepare itself for this difference. Many, however, are not. Some things are just shitty to experience. As I said, I have a chronic pain condition. Pain is, to say the least, unpleasant. There just isn’t any getting past that. But, as I said in the “Emails” thread,

There may still be issues with this condition that make life genuinely hard, that cause pain and hurt to that person, and we must acknowledge that…. [But] the pain and hurt is not the whole story. A thing can be both good and bad, benefit and harm at the same time. “Normalness” is such a thing, surely, as well!

Mental illness undoubtedly has negative effect on many people who live with it. Right now it is very hard to separate out how much of that is due to the illness and how much of that is because we restrict access to understanding and affirmative health care and equal access to society to such a point that almost everyone with mental illness is going to go through some shitty stuff because of it, even if their difference from the norm is relatively slight, and the effect on their life relatively light.

The focus in making their life easier, then, should not be in training the illness out of the person to make them more like “normal.” It should be identifying ways that life is hard for that person, and figuring out how to make it not-hard. That means identifying the true cause of the problem, rather than always assuming the cause is the person’s failure to conform to “normal.”

The true cause might be that the person’s brain regulates its chemicals in a way that makes life hard on the person, and so we try to modify things to bring the brain closer to a place the person will be happy with. This is a very different thing than assuming the cause is the brain regulating chemicals in a not-”normal” way, and therefore the solution is to force the brain to regulate things the “normal” way.

Then again, the true cause might be that the person doesn’t have prescription coverage, that they have trouble finding employment and therefore can’t afford the medicine they need, that there isn’t any support for living independently in their community, that people have weird ideas about them and treat them differently in social situations in such a way as to make their life very difficult.

All of these situations have different solutions, and they aren’t “make the person more like normal or else keep them away from the rest of us by whatever means possible.” Which is, unfortunately, the default solution given how we approach mental illness right now.

And this solution is only possible given that we assume things like “the illness is separable from the person.”

The thing is, many of us with mental illness would beg to differ. Our conditions are not a separate animal; they are not a “disruptive module overlaid on a normal brain;” they are us and we are them. That does not mean that one particular condition must be the single most defining thing in our lives — but it does mean that it is, however large or small, simply one aspect of our selves, one of the many things that make us, each individual person, who we are.

abbyjean put it particularly well in a private email (quoted with permission):

so i’ve been mulling about [the practice of] drawing a distinction between “things a person does of their own agency” and “things a person does because of their illness.” [...]

in my mind, that’s not a meaningful distinction, because the idea of “things i do of my own agency without influence from my illness” is a null set. i cannot separate myself or my thoughts or my motivation from my illness. the illness is so much a part of me, so much a part of my brain, that the idea of me without the illness just doesn’t make sense. imagining how i might think about or react to specific facts and situations had i never become ill, never been diagnosed, never gone through treatment, never relapsed, never been suicidal, etc, is so remote and hypothetical as to be meaningless. how might i react to a situation had i been born and raised in canada by moose hunters? i don’t know. it’s equally remote from my life and experiences, and equally irrelevant to my actual actions and thoughts and reactions.

A circle is not a square with the corners cut off. It is an entirely different shape. And both the shapes are of equal value.

Neither the circle nor the square is any better or worse, more valuable or less valuable, more whole or less whole than the other. They are both whole, they are both legitimate, they are both worthy, they both are. They just are, they are what they are, and you cannot define one in terms of the other.

This, this is what we don’t get in our discussion of any physical or mental difference, is that we cannot define that difference in terms of the “normal” default! The fact that most of the world, and even most social justice activism communities don’t realize the inherent problem with doing this, is indicative of exactly how much we have to break down here — more than I, just one person in all her imperfections, can try to encompass in one blog post.

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Part III: Where the personal gets political

There was a discussion, earlier this year sometime, on Feministe about the right of people with mental illness to refuse treatment. I couldn’t read the whole thing, it was so triggering for me. And I have no desire to search out the specific post and conversation and relive how awful that was.

But I will say this, as a child who grew up in a family that was never un-affected by mental illness, and as a child who grew up under abuse. A child who is still trying to sort out everything that means to her, and will be for the rest of her life.

As a child who watched her family start and struggle, who watched her brothers go through very personal court cases, prison and probation because they had mental illness and their world did not reconcile with society’s world. As a child who watched her brother and sister seek treatment stopping and startingly, watched how that treatment affected them. As a child who observed the differing conditions of her family members throughout periods of differing amounts of support and differing amounts of (pressure/trial/tribulation). As a child who suffered worse abuse during those periods of lesser support and greater (pressure).

I would never, ever force any of my loved ones to submit to treatment they were not willing to take.

It is not a mentally ill person’s responsibility to force hirself into a square box sie does not fit in, so that the rest of the square shapes won’t be unduly affected by hir difference.

It is never a mentally ill person’s responsibility to submit to treatment they do not want to undergo because otherwise they would be a danger to somebody else.

Did you read what I wrote up there? Mentally ill persons are no likelier to perpetrate violence than mentally “healthy” persons, and in fact are twice as likely to be the victims of violence.

The only time the rate of violence rises is — surprise, surprise — when substance abuse is present.

Substance abuse is what my family turned to when the institutions that were supposed to be supporting them were instead working against them.

Substance abuse is what my family turned to when the rest of the world was treating them with disdain for being different.

Substance abuse is what my family turned to when they had no other options left, because society took them all away.

When people with mental illness are supported, when there is an affirmative environment where they can seek help for the problems they face participating in society and there are ways to address those problems in a way that respects their wholeness and humanity and agency — when the rest of the world is willing to be there with a supportive hand when they reach for one, not bearing down an iron fist against their wishes –

– then — guess what — mental illness doesn’t have to be a Big Scary Deal.

The term disability is not a static one but is the result of a person–environment interaction. The less supportive the physical and social environment, the greater the amount of disability. (source)

I know, it’s a radical idea:

Disability isn’t the result of individual defects, deviations from the able-bodied norm. Disability is the result of a society that fails to accommodate these differences.

What if we saw these differences as variation, not deviation? After all, we fully expect our children to be born with any number of different eye colors. Why is it any less when it comes to physical and mental abilities?

Can you shape a world in your mind where there is no norm? What does it look like? How does it differ from the world you live in today? What do you expect of people as a whole in order to support those currently disadvantaged?

The more I think, the more confused I become. It seems impossible to structure society so that everyone is brought to a similar level of ability across the board. But it does seem possible to structure society so that those fully-abled work to make up for those straightforwardly lacking, and everyone works with each other in full expectation of a wide range of ability across the populace, and all of this is seen not as hassling and burdensome, noble and heroic when someone takes it on—but as mundane, everyday, simply expected, no different from separating out your recyclables or driving on the right side of the road: something that everybody does, because it isn’t that hard to do, and it benefits yourself as well as those around you, so it’s stupid and even outright reprehensible not to.

That is the world I want to live in.

Instead, we have sober, reasonable discussions about whether or not mentally ill people are allowed to own their own minds and bodies. We have sober, reasonable discussions about whether their Obvious Danger To The Rest Of Us Important People is too great to bother respecting their personhood and bodily autonomy.

We have removed their agency, and thus feel comfortable making decisions for them.

When instead, maybe what we could do is — I don’t know, recognize the diversity in neural makeup? Recognize that people have different conceptions of The World and How It Works, have different approaches to dealing with that world they conceive? And that their approach isn’t inherently worse just because it ends up conflicting with the majority view — that maybe that conflict isn’t a sign of their difference having to be bad or wrong?

And let people have their damn differences, and when those conflicts come up, manage them. In a way that respects yes, the person is different from the norm. But guess what? The norm is different from them. The fact that there IS a difference does not bestow upon the different parties any particular worth or value. It just is. It just is.

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For more on the same topic, start looking into neurodiversity. Yes: the autism community has been on this for years now! There is a richness of resources out there and I really recommend reading the voices of autistic people speaking for themselves (not the parents and workers presuming to speak for them). It is a crash course in disability theory, in recognizing the wide range of the human race, the way a mind can work and the forms a body can take — recognizing that this diversity is a good thing for all of us, and learning to work with each other on the basis of respect, dignity, and self-determination.