Changing the Conversation: Re-Defining LGBT Community Values

The following is a speech I gave at the Cadillac, MI Pride, yesterday (August 22, 2015). Cadillac is a town about two hours away from Grand Rapids by car. Its population is about 10,000, although it serves as a hub for rural, outlying communities. Thank you so much to Karen Prieur, David Roosa, Tiffany Robinson, and everyone at Cadillac Pride for having Teri and me out!

The bandstand was actually right on Lake Cadillac, with the audience facing the water. Which was really pretty!

The bandstand was actually right on Lake Cadillac, with the audience facing the water. Which was really pretty!

Good afternoon! My name is Mira Krishnan, and I’m so happy to be visiting with you today from Grand Rapids. I want to ask you to share a little bit of your time on this wonderful day with me, to talk about what Pride really means, and what it means to embrace and celebrate, instead of fear or loathe, diversity. To do that, I’d like to start by telling you just a little bit about my personal story. I could go on for this entire time about me, but I do that a lot. Rather than just talk about me, I want to tell you about me more briefly, to provide you context, and talk about some other things.

Probably some of you in the audience today know a trans person. But, I’m guessing, many of you have never met one of us before, or really gotten to know us. That’s important. We know that a majority of Americans who know a trans person – 66% – support trans rights, but that only 16-20% have met us*. That does make me an ambassador, because I want you to join the “know a trans person” group. Don’t worry, if you’re already there, I think I have a few things for you, too.

I represent one trans story. The story I represent has a simple moral: being trans can be a wonderful thing. Although, like most trans people, I “knew” since I was little, I didn’t come out to anyone until just a little less than two years ago. That first time, I was really aware of the risk that coming out entailed. I practiced what I would say. I didn’t sleep all night after that first time I came out. Similarly, coming out to my company was scary. Coming out to my parents was scary. But for me, what magically happened, is every single person of importance in my life, embraced me. Every single one. That really meant something.

I went fully public in July of last year – it’s just been 13 months, and it has continued to be like this – not only does no one object, but over and over and again, people tell me that they understand me better now, feel closer to me. I see in their faces that they take pride of ownership in my success. Good people – and I believe most people are  good, with some occasional help – they use the way they respond to new situations as a way to learn to be more good. That kind of unanimous, unambiguous support and love has really changed a lot of things for me. It’s been what some people call a virtuous circle: as their responses got better and better, my coming out experience got simpler and simpler, and more and more authentic. In the Bible, it’s written as, “Iron sharpens iron.”

Thanks to that kind of support, I don’t doubt if I’m a woman any more. I just am a woman. I don’t use apologetic or defensive language. This might be new to you. For me, I reject the notion that I am now or have ever been anything other than female (and nobody really argues with me). I’m not almost as good as anything; I’m amazing. I wasn’t born in the wrong body; I was born in just the right body. And I don’t apologize for being trans – I rejoice in it. That first night I came out, I planned and I planned, and I thought about all the details. Now, when I come out, it’s pretty much, “I’m trans. Get over it.” And people do! That comes from people not just accepting me, but embracing me.

And that means I get to focus on things that really matter, and say, maybe surprisingly, that being trans (in contrast) is actually kind of boring. Let me take a quick pause there. One theme that comes up, over and over again, is allies asking for education. I love that. You might feel, though, at this point, I’m not educating you, because I’m not talking about all the “stuff” – hormones and medications, gender marker changes, surgeries, clothes – that you think of, when you think of transness. This is not mistake nor oversight. You think you need to know the wrong things. Unless you’re trans, or a healthcare provider or close family member helping a trans person make decisions, this stuff really is not what you need to know. That’s like, when people want to get to know black people, my friends point out, we always want to, you know, touch their hair or know how they make their hair look like it looks. That’s really, seriously, don’t be touching people’s hair, it’s creepy, but it’s also wrong-headed, because what they’re telling you when they’re saying not to touch their hair, is that that’s not how you get to know them. Talking about this “stuff,” is not how you get to know us. I am telling you the important stuff. And it is kind of boring, because although there’s a richness in our trans experience, we are diverse creatures in a diverse world.

Let me tell you what's not boring!

Let me tell you what’s not boring!

So, you might ask, what isn’t boring? Let me tell you what isn’t boring. For me, personally, I’ve gotten to spend the last four years building a world-class Center for Autism, at Hope Network, my base camp for changing the world, back in Grand Rapids. We get to change kids lives, and we’ve been building life changing therapies at a quality level you just couldn’t get, and often still can’t get, around here. And I’ve gotten to help waves of young clinicians develop their skills – not just creating dozens of full time jobs with good wages and benefits but building and launching dozens of careers.

What else isn’t boring? Right in the beginning of my coming out process, wobbling still, as I walked in my true identity, I met Teri, my Prince Charming. I got to see that, at least once in a rare, rare while, love at first sight is real. And although everlasting love can take work, we’re up for it. Last summer, about this time of year, Teri came out to me, as a trans man. That makes us the strangest hetero couple maybe you’ve ever seen, but I say also the cutest. Two months ago, he proposed, and I look forward to spending happily ever after with him, although you know, that’ll be a lot of work, because happy ever after is something you’re not totally just given – it’s something for which you fight.

And finally, what else that isn’t boring, my advocacy life has blossomed. I don’t have to advocate for feminist movement while denying my own womanhood, any more. I’ve made so many friends in the women’s and LGBT movements. I’ve gotten to speak alongside amazing speakers, and like everything we do out in the community, feel like, when I get invited to talk to people, I learn so much that I’m the one getting away like a bandit.

That’s my trans experience. It’s not a lot of things. I don’t represent all trans people. I’m what we sometimes  call “binary” – meaning my identity fits much more closely to the male/female gender binary than some people’s do (I’m a feminist, radical down to my roots, so don’t worry, I rock the boat a little too, and I challenge for sure all the things people say girls and women can’t do). But, people tend to react to me with, “Well, if you’re trans, whatever that is, it doesn’t sound very interesting,” and I recognize that I evoke that response more than a lot of other trans people. But while non-binary identities, genderqueer or gender fluid people, may seem more “exotic” to you, they’re actually really cool, regular people, too, and I hope you get to meet them, and they’re not as different or other-worldly as you might fear. For all the things my trans experience is not, my trans experience shows one thing I need you to know. That one thing is: being trans, and loving a trans person (like my guy), can be delightful. Not just survivable, not just okay. It can be a privilege – I’m lucky to get to be who God made me, and I’m lucky to get to love who God gave me to love.

Trans people, before, during, and after they come out, can live joy filled lives, and when we embrace them, and give them room, sometimes they can really fly.

Beautiful cinema vérité moment – performer dancing with two little children wearing Pride tees. This is actually what it's all about. Little kids get it.

Beautiful cinema vérité moment – performer dancing with two little children wearing Pride tees. This is actually what it’s all about. Little kids get it.

There’s a catch. What’s so important about this event is that what can happen is not what always happens. You knew that. You didn’t need me to say it. But I am saying it. This relates closely to the next thing I want to talk about: a much broader notion of diversity, within our LGBT community and allies, and also a much broader notion of what it means to advocate for a world that embraces gender and sexual diversity, and finally, a broader notion of Pride.

A big part of the reason my life has been so great, is something called privilege. Privilege is all the things that make my life easier, but I didn’t earn them. Privilege, for me, is coming from a middle class, highly educated family, which meant that I very naturally slid into being highly educated and affluent, myself. Privilege has always kept me in safe neighborhoods. Privilege means being able to access the best resources, easily, whether they’re anywhere here in Michigan, or anywhere else in the nation or the world.

Privilege is a big part – maybe the biggest, but not the only part – of what makes my life so easy and so wonderful. And I didn’t earn it. This is the first kind of diversity I want to talk about. Opposite privilege – that advantage I didn’t earn that makes life easy for me – is marginalization – the disadvantages that I didn’t ask for, and I don’t control, that make my voice less hearable and block my agency.

I started this by telling you about my privilege. If you’re familiar with this idea of privilege, and particularly if you’re, oh, I don’t know, white, straight, male, maybe you might be surprised that I’m the one talking about my privilege. And you should turn to the person next to you, who’s not straight, and get them to notice, too. That’s right. A lot of us the visible, hearable LGBT voices come from highly privileged gay people.

This is why you’ll hear more and more outspoken advocates in the community, like me, shift and balance so that we’re not just talking about, say, trans rights, but we’re also talking about how black lives matter (even if we’re not black). We’re talking about how, and to whom, and when they don’t matter. Which is precisely why we need the #BlackLivesMatter movement. This is a big change – you look around Pride events, and usually, there aren’t too many Latino or Black faces in the crowd. That’s what happens in Grand Rapids. That’s what happens, entirely too often, throughout LGBT community. And if we’re really talking about a world where gay people matter, then we need to be talking about gay people who are Latino or Black. To give you an example, you might have heard about the epidemic of violence against trans people. This year, we believe twenty hate murders in the US have occurred, already, and there’s a quarter of the year left. These are hate crimes, although the law doesn’t always recognize them that way (here in Michigan, it doesn’t). What you may or may not know, is that here in the US, the lives lost are almost always black and Latina trans women. So if we’re real about ending this, we have to be more cognizant about this. We have to realize, for instance, I’m not the one whose life is in danger – even if that statement isn’t always popular among my non-Black/Latina trans family members. You hear this same story again and again – the vast majority of all violence against LGBT people motivated by intolerance of their gender/sexual identities, is against black and Latino LGBT people, and we can’t fix that if we’re not honest about it.

The other major shift we need to make is talking about poverty and how it relates to the LGBT community. The visible image of us, all too often, is a limited image of a small segment of us – you know, the stereotypical young, pretty, toned, gay men on a yacht. They have a lot of disposable income. They know all the best places to get brunch**. They’re the kind of person your business wants as a customer, and the kind of person you want as your new gay best friend. Right? I mean, yes, I know people who actually fit that stereotype (and I fit too closely to that set, myself). But that’s not a representation of the whole LGBT community. While many of us have high earnings, many more are highly impoverished. They might have the education, the talent, the skills, but they can’t get the job. Or they might have had their chances cut off way before all of that, when they were just kids. And here in Michigan, where you can get married on Saturday and fired the next Monday for being LGBT, that’s a big deal.

Cadillac Pride, and Prides like it, are particularly important, because we’ve got to recognize that every queer person does’t live in San Francisco or Manhattan or London. Right? We’re everywhere. The Network brought Pride to Grand Rapids, from Washington, D.C., a little less than 30 years ago. Because it turned out that there were gay people in Grand Rapids, too, not just big cities. And that same message goes to the importance of not just the legacy they left us in Grand Rapids, but what you are building here in Cadillac, and also how we reach out to all those little communities up here, you know, the ones that think of Cadillac as the “big city,” and look at you like you’re city slickers? Yeah, it turns out, they can be gay just as easily as you or I can. But they can’t get resources as easily as we can. And we need to support them better.

The second kind of diversity I want to talk about is what it means to truly embrace and celebrate people who are different from “us.”

At the Network, in Grand Rapids, in partnership with MDCH and organizations throughout Michigan, one of the exciting things we’re working on is talking about LGBT wellness. We’re starting with smoking cessation. What? Well, smoking kills more LGBT people than hate does. And while there are still people out there who do hate us, the tobacco companies love us. They’ve been studying for decades how to get minorities and gay people to smoke and keep them as loyal customers. You know, like, to the grave. It’s time to remind them, we don’t die easy. And that’s just a start in a broader message that we have to take care of our own community in order to be able to take care of our towns and cities. At the Network, you’re going to hear us talk more and more about health and wellness for LGBT people. At the Grand Rapids Community Foundation, we launched Our LGBT Fund last year, with more than $350,000 committed so far. What are we going to do with it? Help support the most vulnerable LGBT people. 40% or more of homeless youth are LGBT or questioning, and it’s time to say NO MORE, and engage to help families of LGBT youth stay intact, help parents through their children’s coming out, end the practice of kicking kids out of the home because they’re different (this isn’t some hypothetical situation – it didn’t happen to me, but it did to my fiancé). And if LGBT youth do become homeless, these are kids who hold our society’s future in their hands, not refuse to be thrown away, and even though they’re more likely to be homeless, the system often doesn’t accept or help them, because they’re different. We’re going to put an end to that.

Those are two different takes on diversity. Here’s a third. Back to Pride. Be proud. Don’t come up to me and apologize – I don’t want to hear it, and I’d much rather be your friend than hear your apology. Yes, I, like a lot of LGBT people, I do struggle with being one of the “lucky” ones, survivor’s guilt. But I’m here. And you’re here, and you’ve made a choice to be a part of this family. Be proud of it. Whether you’re gay or straight, Pride belongs to you – it’s a birthright – if you are invested in a world that celebrates difference instead of fearing it. And although the sexual and gender diversity you straight people bring to the table may not be as visible as what we bring to the table, diversity belongs to you, too. Being heterosexual is a sexual orientation. Being cisgender is a gender identity. It’s okay to own yours, even if it isn’t like mine.

So thank you for giving me the opportunity, especially those of you who’ve never met a trans person before, to let you get to know me. And please, stay in touch. Come talk to me and to Teri. Connect with me, if you’d like, online – my blog is at miracharlotte.com and you can even hear Teri and I tell a part of our story in an audio excerpt I’ve got there from StoryCorps. You’re very welcome to find me on Facebook, etc., too, and stay connected that way. And please keep being a part of embracing pride in gender and sexual diversity, and making the world better for all of us, straight or queer, by making it more inclusive of all of us. Thank you.

* I said 61% from stage, sorry! Well, the numbers are approximate, anyways.

** Right now, it’s TerraGR, people. But that’s really not the point of this story.

Navigating “Us” vs. “Them” and the Role of Lived Experience in Regulating Ethical Healthcare Practice

A colleague shared this recent piece by a social advocate who chose to leave the practice of applied behavior analysis. The piece was noteworthy to me for a couple of reasons. First, she and I believe in a lot of the same things, broadly – inclusion, advocating across lines of lived experience for marginalized people, as allies and not as usurpers of their place in the conversation. More specifically, like her, from what I can gather from her blog, I believe in a world of co-advocacy and partnership with autistic and non-autistic people. Although I believe in the idea of the autistic cognitive architecture, I also think that, much like the idea of “white” obscures differences inside the majority culture and maintains the us vs. them system by creating a false appearance of homogeneity, recognizing that neurotypical brains vary greatly is important, as well. Like the author, I’m uninterested in curing autism – I simply want a world in which autistic people can recognize their dreams and have the means to chase them*. So, we’ve got some common basis from which to agree and disagree. Second, of course, although some time ago, I made clear that I am not an evangelist for ABA and not even a practitioner of it, myself, I did make the choice, really, and take full responsibility for it, to focus my own Center for Autism on early identification, treatment planning, and early intensive behavioral intervention, or ABA therapy, for autistic** preschoolers.

As an aside, watch this. We need to embrace and empower autistic voices.

Back to Steph’s viewpoint. I think it is an interesting viewpoint – I had not seen this particular article before, but I’m familiar with the perspective, and she has a lot of important things to say. Part of me wishes she would not have chosen to do what she did – walk away. I respect why she did it – and I could see making the same choice in her shoes. I also respect and embrace the anger. But the reality, too, is that there’s a groundswell of support behind the idea of ABA – 39 of 50 states, I think now, covering the vast majority of the population, individually passed coverage bills, most of which specifically apply to ABA (and not broadly to autism therapy). In all of these states, strong networks of the parents of autistic youth were involved in advocacy. I can’t speak for them all, but I was here, in Michigan, as a small part of this happening here, and I do know that I testified alongside autistic young adults who supported the legislation. But while the point that this did not happen over the dead bodies of autistic people, in the sense that there is disagreement amongst autistic people over the topic of early interventions, the point really is that it did happen.

Photo of one of my actual kids and one of my actual (past) therapists, both of whom I love (source: Hope Network)

Photo of one of my actual kids and one of my actual (past) therapists, both of whom I love (source: Hope Network)

Here in Michigan, we’ve added well over a thousand children to ABA therapy in the last three years. So this is a thing. And the reality is that most of the people trained in behavior analysis have no exposure, at all, to the debate on its morality – they are definitely taught ethics, but the ethics are unquestioning (or at least, they seem this way to me, based now on knowing many practicing behavior analysts) with respect to the basic tools they use, as well as the basic assumptions they make about the lives of the kids they serve***. So the result is a strong divide – hardly anyone inside the system is talking about this, and hardly anyone who is talking about this has any relationship to “the system,” which is a real barrier to positive change. This means that things even that shock the vast majority of us, about which there is little or no controversy, like the Judge Rotenberg Center, whose use of shock therapy to “treat” autism is internationally considered torture, but continues quietly in Boston, even right now****.

To me, there are two big issues we must somehow overcome, besides retaining people like Steph from the article in the conversation (if not as therapy providers, as participants in developing a more ethical range of services).

The first is addressing the lack of autistic people in the ranks of early autism service providers and developers – I think this is a real shame. It was a big deal to me to have an autistic staff member, and I finally accomplished this some three years into being at my Center, and more than two years after taking control of my Center. What I really want, but I will admit I don’t know how to do yet, is to have autistic therapists collaborating on the therapies or services for autistic kids. I really hope someday the universities who train in this area do more to get people who have lived experience to join the ranks of trainees and therapists. The problem is that none of us can ever really know exactly what it’s like to be an autistic person, and this will always be a limiting factor with respect to our ability to make ethical judgments. And given the amazing range of autistic people, unlike some other populations, this should be an addressable problem.

The second is that autistic self-advocacy is full of people who have voices – people who are not or not very “impaired” or “disabled” in the sense that society traditionally defines it, whether or not they identify themselves in that way, and who thus are able to participate in the traditional, unmodified discourse (that is ableist and assumes the kind of dialogues that neurotypical people have and use). I love these voices of autistic people, even if they are a subset of a larger whole, and I celebrate them even if they say things I don’t want to hear, but the danger implicit in this is the same kind of danger, say, that would occur if affluent black people who are isolated from deprivation, poverty, and violence, were the only advocate voices on behalf of all black people*****. Or it’s a danger I navigate, myself, when I advocate for trans people – suicidality, poverty, lack of family/community acceptance, and hate crime / violence are all real things, that happen entirely too often to “my kind,” and at the same time, I’ve never experienced any of them******. This is actually more relevant than it might seem – Ivar Lovaas, relatively later in his career, collaborated with John Money of Hopkins in developing LGBT conversion therapies, essentially applying ABA to the LGBT “problem” with disastrous consequences…. Now, many states are now in the process of making conversion therapy illegal (I hope Michigan joins, someday) and President Obama has joined this call, himself. I wasn’t taught this when I was first exposed to Lovaas’ work. I did become aware of it, shortly after I started at the Center, and ever since, I’ve always been conscious of it in trying to build and to understand.

The difference is that, although it can be hard to hear them, people marginalized for their race, their sexual/gender identities, and by poverty, deprivation, and violence – they do have voices, and more and more, they are taking their place in these advocacy frameworks. But, in the kind of neurodiversity view for which the author advocates, how exactly do voices of people who don’t have voices count? This isn’t rhetorical. It does sound entirely like the maddening conversation in which the majority always asks to be educated on the backs of the minority. At the same time, there is legitimacy in a question of how a conversation is shaped that is truly inclusive, if one believes this kind of broad neurodiversity model (and eschews the idea of any kind of therapy or special services that seek to help autistic children gain skills that neurotypical children gain and they don’t, or which NT kids gain more easily than autistic kids, whether or not they are based on a “curative” model).

And, I think there’s a complex question of how much relevance people who do have voices have to the welfare of people who don’t, although certainly, just as in the case of LGBT advocacy, lived experience should count for something, even if that lived experience necessarily has gaps with respect to the broad range of lived experiences.

Anyways, the big thing that I think, in response to this article, is that we have to learn to question the ethics and morality of everything we do – even the things we most believe in – more openly, and we have to be prepared for critical moments when it turns out we were doing the wrong thing, and be ready to change in those moments instead of doubling down. And just like we believe that our therapy can become technically better over time, we have to believe there may be ways to make it more moral and more ethical, too, and we have to set both of those goals, not just the goal for technical excellence.

I guess the problem with these none shall pass moments is that we’re always stuck in what we know today, and not what we will know, tomorrow. (source: Wikimedia)

For now, I’m trying to continue standing on the bridge and making sure that therapy is ethical and truly good for kids. I’m doing it for them, and for myself, and not for anyone else, because I don’t think they owe anyone anything. I respect Steph, the author, and her choice to advocate from the outside. I embrace the disagreements we likely have in our philosophy towards autism, and just the fact that our lived experiences are likely very different. I hope that we can both, together with actual autistic people (since that is neither of us) do something to make a world that is better for autistic kids, and autistic people generally, and I recognize that none of us knows precisely what that world will look like, because we haven’t lived there yet. But  I believe, together, I hope, with her, and with all my autistic friends, that it will be wonderful.

* And importantly, I feel I have no say in what those dreams are. That’s none of my business, unless / until someone chooses to share them with me. Certainly, I’m not in the business of telling anyone what their dream is. Although I suspect I’ll live to see my world changed in unimaginable and wonderful ways by them.

** Regarding the use of the phrase “autistic people” – this is something I encourage everybody to read. I’ve heard many people say (and probably said, at some point, myself) some kind of analogy like you wouldn’t say “cancer kids” (actually, people who’ve worked a lot with kids with cancer do, but that’s another conversation). For what it’s worth, autistic people who both use this language and recommend that others use this language recommend it precisely because they don’t think analogies like the one with cancer are appropriate. I used to more navigate the fence between parents, who preferred the “child with autism” language, and self-advocates, but I more and more give in and agree that the self advocates have it right.

*** This isn’t a criticism of Behavior Analysis. Certainly, right now, Psychology as a field (and the roots of Behavior Analysis came from within Psychology, and although many now identify their field as a different, separate field, many behavior analysts also studied psychology as undergraduates) is just visible dealing with the aftermath of a miserable ethical and moral failure. This came in the form of our field’s unwillingness to take a firm stance against torture and our allowing the American Psychological Association’s rules and ethics code to be twisted to condone and even torture. If you don’t know about it, read the Hoffman report.

**** Changes were made, albeit with a “grandfather clause” that allows some people receiving services here to still be treated with the skin shock aversive, although apparently new patients are not receiving this, any more. But that change did not come from organized rage within psychologists or behavior analysts, but from the outside.

***** Look no farther than Dr. Ben Carson, although, for all his many, many, many flaws, he is actually less racially ignorant than many of his rivals in the current Republican primaries.

****** The complex dynamics of survivor guilt play a big part in this discussion, as well, since I am, admittedly, primarily “lucky” (or privileged) to not have experienced these ills.

Utilization Management and Trans Healthcare

This is a quick post – I posted the following comments in response to a post by Trans-Ponder on Facebook. They, in turn, posted an article by Alyssa Jackson for CNN, “The high cost of being transgender.” Since my comment was longish, I wanted to preserve it here on my blog (so, like some other recent posts, this is one of those “too long to just leave as a FB reply” posts).

Let me start by saying that I am unequivocally for a future (1) where a wide variety of trans experiences are embraced, and (2) where transition related healthcare (e.g., therapy, hormones or other medications, and surgical interventions) that some (not all) trans people choose is readily available to trans people irrespective of their socioeconomic status. My basis for a belief in a future of this kind is first, and foremost, because trans people are and have been around for a long time, and society needs to get used to it. Second, transition related healthcare is clearly safe and effective (viz. this and this and this and this and a million other reviews and studies, including the extensive data synthesized in WPATH’s position).

I am, for better or worse, also a healthcare expert, and I’ve been involved in discussions of making changes to reimbursability and enhancing access to services for underserved populations (in my day world of preschoolers with autism – I don’t provide trans healthcare). This doesn’t make me a leading expert in this conversation, although I know many of the leading experts, and I’ve talked with most of them about all this in some depth. It’s noteworthy, to me, as well, that none of them are quoted in this article, and that HRC, NCTE, and other leading voices that have done and synthesized the healthcare utilization research, are not quoted, either, in the context of cost, although relevant voices are quoted in the context of risk, e.g., with respect to suicide in our people.

The CNN article includes some real-world reports of trans people and their healthcare choices, although it only includes examples that appear to be significantly above the typical (e.g., +/- 1SD) spend for transition related healthcare.

The CNN article includes some real-world reports of trans people and their healthcare choices, although it only includes examples that appear to be significantly above the typical (e.g., +/- 1SD) spend for transition related healthcare.

From a healthcare utilization / healthcare sustainability standpoint, there’s a lot of problematic content in this article. The large (it quotes $140,450 for trans women and $124,400 for trans men) estimates cited in the article are for combinations of procedures that almost no patient ever chooses – note that the Philadelphia center cited for this data includes a wide variety of services, including blepharoplasty and rhinoplasty for trans men*. It appears to achieve its totals by literally adding every procedure together, even when these procedures cannot be done in conjunction. For instance, it adds the fee for an upper and lower blepharoplasty to the fee for a single, upper or lower blepharoplasty – this doesn’t make any sense – the second, lower fee is included in the list for someone who needs / chooses to only have one pair of eyelids, the upper or lower, done, and not the other. It likewise, for trans men, combines the costs of three different chest reconstructive procedures that all achieve the same outcome, and likewise, different, alternative bottom surgery procedures for trans men (that is, in each of these respective cases, any given man can do one of these things, but not all of them at the same time).

This is important because the figures cited in this work (which is on CNN, and thus has the potential to garner a lot of attention as well as remain part of the conversation over time) are starkly in contrast with data gathered in a rigorous manner by the people who’ve been most invested in moving us to the kind of future I want. Let’s start with San Francisco, the first US city to offer trans health care to all residents.

Note that the 2001-2006 San Francisco data had methodological limitations with respect to the per claimant spend (that is, they didn’t know how many unique claimants there were across the five year period, because they didn’t know how many claimants had also been a claimant in a prior year), but the reasonable median estimate was around $25k per claimant over five years, and the high estimate was $64k, well below the $75k cap imposed** in that model program. This is consistent with the long-term, multi-source data that converges on the result that the cost per covered life for an insurance plan (or employer) is very low (figures come out at in the neighborhood of $0.17 per covered life), as long as there is a medium or larger group of covered lives. The cost in San Francisco’s case, when they went through the first wave of making access available to the city’s own employees, was so low, that they famously stopped collecting an offset surcharge because they didn’t need the money.

We live in a world where, one way or another, care is utilization managed. I’m all for flexibility that allows for serving rare cases where transition related health costs are very high. More to the point, $25k is still out of reach for a large segment of the population – for instance the recent NYT article from a couple of days ago cites the median net worth of 18-34 year-olds as just $10,400, making the difference between $25,000 or $30,000 total costs and the unrealistic figures purported by CNN really irrelevant to an affordability conversation.

Similarly, when one looks at other successful attempts to systematically change access, such as the success we’ve had providing ABA therapy to children with autism (which I mentioned because I’ve been directly involved, in my small way), family costs of $25,000-50,000 are generally accepted by the public and by legislators as costs that “most Americans” cannot bear. So, we don’t need inflated estimates suggesting that trans people are commonly spending $80,000 or $150,000 on services, to win the coverage we want to see, both because people don’t have the smaller amounts of money, to begin with, and, importantly, everybody gets that.

The contrary risk is simple: the higher we make these costs out, especially when not borne out by data, the more reticent stakeholders will be to make these important changes.

With respect to reasonably feasible alternatives, outside of very large, high profit industries (the kind already scoring 100 on the CEI and already providing access to care), the alternative also, we have to consider, is an alternative that somehow tries to measure “objectively” the basis, e.g., on pre-procedure dysphoria level for the patient, and that kind of gatekeeping is deeply problematic for the trans community as well as for our providers. The last thing we want is a system where trans people have to be miserable (or pretend to be miserable if, like me, they are really happy) in order to access services. But if we walk into this argument citing astronomical cost bases, I am very concerned that this is where we might end up.

As the public, a lot of my friends believe firmly in a “no gatekeeping” model. But, the reality is that medical care provided in a congregate funding model – Medicaid, Medicare, insurance, universal health care systems like NHS, hybrid public/private systems – is gatekeeped in one way or another. Although the reality is that the biggest cost drivers, especially in the developed world, are not things like trans healthcare (or autism or any other area where we’re fighting for access), but “boring” things – note that in this review of nine drivers of increasing American healthcare costs, the only disease / problem / disorder / population centric things that even make the list are “lifestyle” diseases (being gay isn’t a lifestyle disease – this is talking about the effects of things like sedentary lifestyle, bad diet, smoking, etc.) and end-of-life care. Nonetheless, it’s flashier to pretend like extending healthcare to critical, impactful areas like trans healthcare (which can prevent the staggering loss to suicide in our population and which clearly provides improved quality of life) is the problem. And this is politics – it isn’t about what’s right, but about what’s perceived.

So let’s tell our story clearly, and not misrepresent our situation in a way that reduces our likelihood of getting the help we need.

*  I don’t even know an example of someone choosing those procedures as part of transition, for instance, as a trans man – I’m not saying it isn’t done, but I’ve never met a trans man who had these procedures done as part of transition, and I have been paying attention, both so that I am generally a better advocate and an ally, and of course because I am rather engaged to marry a trans man, myself.

** In fairness, it is worth noting that median and mean figures belie ranges. They are still important – because when you are looking at large groups of insured people, one must estimate actual costs in a given year across the entire population, and these costs can be used to effectively make these estimations. The range does vary, and this is important with respect to how these access policies are set up. And back to fairness, one should note at this point that San Francisco initially capped services at $50,000 and then moved the cap up to $75,000.

In Search of Sexually Empowering Feminism

Okay, you guys, I swear this is not an XO Jane Unpopular Opinion piece, but I am not a sex-positive feminist.

This idea Marilyn was talking about, the difference between being sexy and being objectified - t's really deep.

This idea Marilyn was talking about, the difference between being sexy and being objectified – it’s really deep.

Oh, I like sex. I like being sexy. I like it when my fiancé calls me sexy*. But I don’t like being reduced to the role of an object, even if I play object roles. And I don’t like being a tool, especially not of the patriarchy. And I am not a sex-positive feminist.

It wasn’t a typo.

So I gave a local training to a family health center, today, and the idea of sex-positive messaging came up, unfortunately advocated for, blindly, by a university nursing professor. Her advocacy of this issue is wrong for one of the most basic reasons I oppose sex-positive feminism – because her embrace of it is uncritical. No feminist – no woman – no person – should be uncritical. Not about sex, and honestly, not about anything. It isn’t safe. Not in a world of criss-crossing power structures and systems of oppression. To make blanket assumptions that sexuality is safe in the sense of its relationship with power has deadly consequences, particularly for women, every day.

This is a question we ask critically, not an assumption we make. And sex being free doesn't mean free for (men to do the) taking. Source: Hiphoptumblr

This is a question we ask critically, not an assumption we make. And sex being free doesn’t mean free for (men to do the) taking. Source: Hiphoptumblr

I want to outline the reasons why I am a sexually empowering feminist, but I am not a sex-positive feminist. I’m not the first one to talk about something like this. In 2012, a feminist from the UK, Lisa Downing (Prof. LD) coined the idea of sex critical feminism. She was writing in response to Fifty Shades of Grey, which many revile as terrible writing, but far more importantly, many feminists and others call out as being not about lust but about sexual victimization (the BDSM community took exception, also). Downing wasn’t the only one. Whether they banded behind the sex critical term** or not, these authors talked about some major themes – how sex positivity feels to them as victims of sexual violence, because it is uncritical, and because it pits women against each other. And yes, XO Jane Unpopular Opinion got on the bandwagon, too***.

  1. Sex is at the very root of sexism. Sex and things related to sex, like pregnancy, abortion, rape, victimization, trafficking, are, of all the spaces in which we fight, the space in which we are most literally fighting over a woman’s body, whether we are feminists who are there to help her stand tall, or tools of the system that are there to violate her. To consider sexuality in an “empowering” way that does not recognize that sex has deep intersections with power structures and systems of coercion that keep the Patriarchy in place is unacceptably ignorant. Now, there’s that much ballyhooed over-simplification of second wave feminism, right? All sex is rape? What was really going on in the Second Wave that is important for us not to forget is that feminists were asking radical questions about how sex could be ethical. They did not blindly assume sex was ethical – rather, one of their most radical questions of all was to ask, “What if it isn’t and cannot ever be?” These questions inform conversations like the question of how living in the gender binary can be ethical, and they remain very relevant today, as exemplified by news like Bill Cosby’s serial raping, women being criminalized for miscarriage, the absurdism of “legitimate rape.” Sex positivity just forgets or washes over all of this. Sure, it recognizes that rape is an act of violence. Sure, it advocates for explicit consent. But again, the idea that men not raping anybody and asking for explicit consent before having sex, just those two things, makes sex ethical, is completely ridiculous.

    I don't mean to call out this radio program, and I just found this doing a Google search, but this is a good example of how the messaging of the

    I don’t mean to call out this radio program, and I just found this doing a Google search, but this is a good example of how the messaging of the “sex positive” movement is often objectifying to women (Source: CKUT)

  2. Sex-positivity all too often sells sexual messaging that is masculocentric. Now this gets into bones of contention among feminists, and I disagree with some women I respect mightily. But for most women, we cannot be truly sexually empowered if we are pretending to be men. And yet, too often, sex-positive messaging is like the “shrink it and pink it” of athletic wear. So sex-positivity forces us to talk a masculine game. If a woman stomps her fist and demands orgasm, that’s increasingly cool, and some very visible women are doing that – Amy Schemer, Nicki Minaj, and others, and this conversation is increasingly going global. That’s cool – I applaud that. But, if a woman – even a woman who has and enjoys many orgasms – says that her enjoyment of sex isn’t centered on orgasm, she is immediately viewed with suspicion, and admonished to demand orgasm from men like these model women. She is never asked: “Okay, then, orgasm isn’t the be all and end all for you. Cool. So how can I make sex more pleasurable for you? What gives you value in sex?” Why isn’t she? Why don’t we believe, in this era of sex positivity, and sex positivity that is supposedly feminist, that a woman could have a viewpoint on her own sexuality? But just like past eras of sexuality where it was a liberating idea that a woman could be on top in heterosex****, all it does is take a man’s conception of what sex should be and put it on women. That isn’t empowering to me.

    It really is entirely too much fifty shades of rape. Source: Women's Aid and Refuge 24H Helpline

    It really is entirely too much fifty shades of rape. Source: Women’s Aid and Refuge 24H Helpline

  3. If you’d been traumatized, you might feel differently. Sex positive messaging also has a tendency to celebrate sexuality in a way that is deeply inconsiderate of trauma survivors. Worse yet, sex positivity and the demands to conform to this view that the “movement” places on women place sexually empowered women like me at odds with survivors who do not feel safe with sexuality, when in reality we are sisters and we need to be lifting each other up.
  4. Why doesn’t anyone think about the aces & aros? Sex-positive messaging (and I’ve made this mistake, too, although I do know better, and I need to knock it off) does not recognize that there are some people – including some, but not all asexual and aromantic people, who may not want to have sex, and who may not need to enjoy sex. Sex positivity not only doesn’t recognize that not all people are sexual, it writes over the narratives of the marginalized with the majority’s narrative. That’s so not cool.
  5. The Sexual Revolution All Over Again. And here’s the rub that women know all too well. The sexual revolution was this proclaimed attempt to free our sexualities. But what it did for heterosexual women is primarily create a set of rules to maximize our bodies’ availability***** to men. While the sexual revolution seemed appealing to many women at the time, in the long term, it was deeply problematic for us, and it leaves us a legacy yet today. Look at online dating and “hookup culture” – Tindr was created by two guys (and from the looks of it, not nice guys). The idea that women can either be sidelined by some other woman who is more willing than they are, or they can play the man’s game on the man’s rulebook, is a fool’s choice. Even for women who do legitimately find value or meaning in hookup culture, it’s vital that we understand that we are participating in a game that plays by rules that are deeply patriarchal in their design.

* And Teri is quite the Prince when it comes to tolerating the dissonance between the fact that I love my sexuality yet question its ethicality.

** Notice I used “sexually empowering” instead of sex critical. This is not because I don’t respect Downing’s work – I do, immensely. Rather, I think the name sex critical is problematic. Unlike some of our most radical sisters of the second wave, I see sexuality as something that fulfills a deep, human need for many (but not all) people. Being sex critical to me implies that doubt of the second wave that sexuality can even be ethical. I’m committed to the idea that we can make it more ethical, and I’m committed to the idea that anyone can be sexually empowered, whether they are sexual or not, whether they have sex or not.

*** I kid, I kid, I love XO Jane, I totally click through and read all the articles. And although I disagree sometimes, I love the idea that women can have opinions different than mine.

**** Straight people and their sexual practices are so quaint.

***** I was going to say, our sexual availability, but the reality is that it wasn’t and too often isn’t ours, and it’s not us but our bodies that society wants – this is ultimately the entire concern critically conscious women, even women like me who love sex, have about sex positivity.

The Place of Female Chauvinism in Feminist and Women’s Movements

This is something I’ve been struggling with. So, I’m a female chauvinist. And I’m not really sorry.

Well, sort of. You know I’m sorry about everything, except for being sorry about everything. I should be clear about what I mean. Because I don’t hate men, at least not in the sense that you think of that term in the context of feminism (slash basically no feminists really do*). Sometimes I think I’m better than them (okay, kind of a lot, you guys make it too easy) and sometimes I think they’re better than me (okay, only occasionally). But saying I love being a person wouldn’t cover it – I love being a woman. And that’s on the short list of things for which I’m not at all sorry. I’m thankful to have been born born all kinds of other things – fast, smart, trans, pretty, occasionally funny but not when I tell dirty jokes** – but particularly, I’m thankful to have been born female.

So, chauvinist but not exactly a chauvinist pig.

Truth be told, calling people pigs has always sort of ... I don't like that. It really bothers me, for some reason. Source: Wikimedia

Truth be told, calling people pigs has always sort of … I don’t like that. It really bothers me, for some reason. Source: Wikimedia

And I think there is room for restorative pride in the feminine experience, pride in womanhood, pride in girlhood, that recaptures the imbalance in society’s objectified, distorted, and sexist ways of patterning everyone’s thoughts about us (including us). The idea that pride is restorative is really bedrock to this. Pride in womanhood is fundamentally different than pride in manhood because of the hierarchical sexism inherent in our society that places manhood above womanhood. Pride in femininity is fundamentally different than pride in masculinity because of the hierarchical sexism inherent in our society that places the masculine above the feminine.

Seriously, so note how much makeup the inpatient in a hospital is wearing for her review with her attending. In an article about how sexism hurts women's health, for the love of all that is good and holy! (Source: Role Reboot)

Seriously, so note how much makeup the inpatient in a hospital is wearing for her review with her attending. In an article about how sexism hurts women’s health, for the love of all that is good and holy! (Source: Role Reboot)

In this way, talking about pride in being a woman – female chauvinism – is not only a good and radical thing, but it is analogous to other pride in the context of other kinds of struggles. So white folk get uncomfortable at the idea of #BlackLivesMatter, wait wait wait, uh, you mean all lives matter, don’t you? And please don’t mug me – I listen to Beyoncé! And straight people can’t understand why gay people need a pride. Why don’t I get a flag? And when they do have a flag, they have distorted reasons about what it means within a system of oppression from which they benefit. 

But, while “good feminists” embrace the idea of black pride, they reject the idea of female pride. And I’m saying they shouldn’t.

I believe these phenomena arise from a really interesting side-effect of marginalization, which I want to be the focus of this piece. In many ways, the mechanism of marginalization – of all these isms – tends to attribute all the diversity to the dominant group. So we pay lots of attention to differences in hair color and eye color, because they vary a lot in white people, but we ignore all the things that are different about the billions of us black haired, brown eyed peoples. Guys are individual, identity-laden agents of change, but women are interchangeable hoes***. And there are a million and one straight love stories, every one of them different, but society-killing, Christ-denouncing, global-warming-causing same sex marriage can be simplified into a unitary construct, as if there’s no diversity among LGBT love stories.

We should be proud in our womanhood like Bree Newsome is proud of her blackness (incidentally, you go, sister!) Source: Inform!

We should be proud in our womanhood like Bree Newsome is proud of her blackness (incidentally, you go, sister!) Source: Inform!

Now you’re really going to think I’m crazy, but what I’m going to do here is say that the dominant culture – the white guys – also have a point. Don’t worry – it’s not the point they think they have. The interesting phenomenon is that, simultaneously, dominant group mechanics, while seemingly attributing all the diversity to the dominant group, actually whitewashes**** much of the really meaningful diversity in the dominant group. You can see this in white folk who cling to the 1/64th of their ancestry that is Chippewa or Cherokee – because they recognize that being “white” does not confer them a really meaningful racial/ethnic identity in the way that being Indian-American does me. This is why every white person wants to be Irish on St. Patrick’s day. You can see it in how all the clothes all the straight guys wear looks exactly the same, but it’s really important to them to be distinctive by having those shoes in just that shade of brown – again, the process of marginalization makes the world all about men, but it whitewashes men in some special and perhaps hard to realize ways. And they don’t want to be whitewashed (and I’m glad of it!).

This isn’t just a case of the grass is greener, of all the straight haired girls want curly and all the curly girls want straight. This is a fundamental characteristic of that asymmetrical relationship.

To me, the solution to this is radical, and it comes from chauvinism. I actually think that straight people should have a Pride. It’s just that it’s the LGBT Pride we’ve already got. As we become a cultural force with which to reckon (oh, we will / we are), I think it’s right to think about making the centerpiece of Pride be about gender and sexual diversity, but to emphasize that not only LGBT people are diverse with their gender and sexuality. Of course, our diversity is the most obvious, but straight people are diverse, too. I’ve taken to pointing this out, every time I talk about the concept of gender expression. You take 100 straight girls who work in the same industry, and some of them don’t even own pants, and some of them wouldn’t be caught dead in a skirt. Some of them don’t wear makeup to interviews, and some of them wouldn’t be caught without false eyelashes at the gym. That’s diversity of gender expression. And you don’t even need to understand LGBT people to get that it exists. And if you really celebrate it, to me, you’re welcome at Pride, not as an ally, but as a full blooded sibling. Even if you’re straight.

So, my answer, radical as it is, is to not only embrace chauvinism in my womanhood (and the idea that I can be proud of being a woman but that pride does not bind me to a course of being sexist), but to embrace the idea that you can be proud of who you are. Even if you’re a straight white dude! But you’re going to need to re-capture who you are. Because you’ve been defined in this sexist way that makes you everything and makes us nothing, and surprisingly and unintentionally, also makes you nothing and makes us everything

This is a big part of the reason I really nudge Teri and his friends along in this idea of developing a robust, future-compatible concept of manhood, not just for themselves, but as a gift to all men. Sure, I benefit, because if men weren’t tools, feminist movement would be so much easier. Obvi. But the truth is I benefit directly, because Teri is a man, and moreover, he’s my fiancé, and the better man he is, the better my life will be – not because I need a man anymore than a fish needs a bicycle, but because my life and his are wound together. Just as the better woman I am, the better his life will be. That’s the shared destiny of our selecting each other as mates, and it’s the consequence of the commitment we make to each other, the one we will consecrate someday soon in marriage.

And finally, yes, I glossed over it so I could pack in a not very funny joke, but I did say born female. As a trans woman, I take some relatively strong views. One of them is that I am biologically female, irrespective of the sex to which I was designated, irrespective of anything, period. I don’t know what my karyotype is – I haven’t and don’t need genetic testing to know who I am. Moreover, that very concept is backwards – my genes have the potential to explain the diversity of sex, because they probably aren’t typical female genes, but they’re carried by a woman (me). I’m a woman irrespective of how they look – and I know this from years of trying to deny this simple truth. In embracing authenticity, I’m not living “as a” woman or or somehow changing to my gender identity – I’m simply accepting reality*****. For this reason, I reject terminology****** like male-to-female or female-to-male, for myself, anyways.

This is a karyotype. Not mine. Some guy's. Seriously, if you want to have a conversation about the biology of sex and you don't know the word karyotype... Source: fineartamerica

This is a karyotype. Not mine. Some guy’s. Seriously, if you want to have a conversation about the biology of sex and you don’t know the word karyotype… Source: fineartamerica

The relevance of this strong view is that I reject the idea that I was a man, or even a boy. Which is important, because it allows me to be unabashedly a woman – I think everyone who knows me knows I don’t identify as anything, and I don’t prefer things, either.

So I’m proud to have been born female. And I’m proud to be a woman. And I’m not sorry. And I want you to be proud, too. I just want you to be proud in your identity, and I’m willing to help you find your identity. Because you can’t be proud in your privilege.

* I found this article while I was looking for another article, and it’s so amazing that I have to make sure I mention it, by creating a footnote to nothing (cue the bridge to nowhere hyperbole), and I’m going to have to figure out some way, before I publish this piece, to footnote something with this. Because this is amazing. The truth is that, although she uses aggressive language (very Dworkin-worthy), I pretty much actually agree with her. Except that I, unlike her, am kinda cutesy. Well, more than kinda. And I don’t fight, I play fight, and most likely, I don’t hate, I play hate. No, not player hate. Ahem. She explains by the end of the short piece (although apparently too long for the men’s rights folks to finish reading it) that she doesn’t actually hate men, which would also have been obvious from the rest of the piece if one were actually reading it (slash if one were a woman). Also, in solidarity with her, I hate refrigerator magnets. Ask Teri. Or better yet, ask me about the whole situation with having to clean rust off my stainless steal dishwasher that I hardly ever use because of the giant stupid refrigerator magnet someone put on it. Ahem. No, we’re cool, actually I totally love her, we’ve since become really good friends, that one and I.

** Okay, I told one dirty joke that was actually really, really funny, and totally on point. But it’s the only one I can think of. The punchline was “Let me introduce you to my Beaver Cleaver.” You kind of had to have been there. Erm.

*** Or, all too often, interchangeable holes. Oh, you thought I couldn’t be that radical? But seriously, this idea is rife in the “makeover” element of every movie where some mousey girl gets a makeover and looks like she came off the cover of a young woman’s magazine – it’s important, because the dominant culture messaging of men says that every woman could be that girl, if she just toed the line a little harder.

**** Only here to be funny to Teri: Well, that’s an unfortunate name.

***** Truth be told, I still use the term transition – the thing about having a reclaimed identity is not just that I didn’t make up the language, but that I must find a way to describe who I am in a language that wasn’t my choosing and that wasn’t designed to include me in the range of possibility. So, I still use transition, but I’m predicting that you’ll see it appear less and less, and although it’s been in many of my posts, and in this case, I’m relegating it to a footnote. Baby steps.

****** I kind of had a moment of annoyance at an event I did a few months ago – a local activist asked me to be on a panel to “speak about the transgender,” and she had an “MTF” and an “FTM” and a “non-binary” and anyways… I told her, sorry, I don’t do talks about the transgender, and I don’t share stages with MTFs or FTMs. Mostly being flippant, but I think, in the long term, you’ll like my language better, because you’ll like the identity-validating message underlying it. And also the simplicity. Because seriously, like, I can’t keep it straight, whether I’m an MTF or an FTM or an MTFTMTF. I’ve got a little pea-sized girl brain, give me a break.

Our Model of Suicide and Maintaining Mental Health Stigma

This is one of those short posts that started life as a comment on someone else‘s timeline on Facebook. My friend, Tania*, asked for people’s thoughts about the idea of legalized euthanasia, suicide, and/or physician assisted suicide. Her questions follow this article from the NYT last weekend.

Anorexia is my personal experience, but it's also relevant to me because there is so much policing around the expression of and fear around the honesty of us as women who are there (and to a lesser extent who were there) Source: @daniellehelm on Flickr

Anorexia is my personal experience, but it’s also relevant to me because there is so much policing around the expression of and fear around the honesty of us as girls or women who are there (and to a lesser extent who were there, and of course, of the men who’ve been there, too) Source: daniellehelm on Flickr

There was one book**, back when my struggle with anorexia was much more active, that was about a young woman who did eventually die (passively) – the young woman made an argument that, in her case, anorexia was terminal. Her argument was based on her experience trying a wide variety of both outpatient and inpatient treatments, and getting progressively sicker. It was a pretty sophisticated argument – it wasn’t a simple brinkmanship kind of argument. The anorexia world is full of these stories of people who drop down to unimaginable weights – like a person who weighed 120-130 lbs dropping all the way down to the sixties – who go on to survive and thrive. Marya Hornbacher is just the most widely celebrated of these stories***. But the young woman… well, actually, it wasn’t her making the argument – if I remember correctly, the book was written by her surviving father, who was telling her story, bravely even including her feelings about the terminality of the illness. Again, if I remember correctly, he didn’t necessarily agree wholeheartedly with what his daughter said, but he had given it deep thought, and he had come to the conclusion that it could not be cursorily written off (as many people are wont to do – for instance just cursorily saying the young woman in the NYT story shouldn’t be “allowed” to “choose” suicide). And, importantly, he recognized that he did not understand the illness like she did, because he had been there as an observer, but the battlefield had been her body.

As survivors (and proud of it!) we know an elemental joy of surviving that you, who have never survived, may not be able to understand. But in having survived, we come face to face also with the knowledge that our survival was not guaranteed, and if we take pride in our survivorship, that pride must recognize the sisters we lost. Source: @Rega Photography on Flickr

As survivors (and proud of it!) we know an elemental joy of surviving that you, who have never survived, may not be able to understand. But in having survived, we come face to face also with the knowledge that our survival was not guaranteed, and if we take pride in our survivorship, that pride must recognize the sisters we lost. Source: Rega Photography on Flickr

What’s important about this view is also that she was not saying that all people who are suicidal should end their lives – people who find this to be their solution are not saying, for instance, that no suicide prevention work should be done, or even that our efforts to prevent suicide should not be intensified. Rather, they are merely saying that an expectation of survival of their illness may not be reasonable.

I read this book more than ten years ago, and so it’s taken me a long time to evolve how I think about this. But, what stuck with me for a long time is that, when we talk about diseases and disorders that affect things other than the emotional brain, there are many, many things that don’t have a 100% survival rate. My fiancé had leukemia twice – he survived, and I am thankful, but we accept that a minority will not. For all kinds of leukemias integrated together, the five year survival rate is now just over 60%, meaning we accept that almost four in ten will not make it. Death may not have been a certain outcome in Teri’s case, but neither was life a certainty. If one ignores whether death was “one’s fault,” then the reality is that several mental illnesses – anorexia is one of them – have known rates of mortality. Anorexia is one of them.

When we talk about mental illness, there is not nearly often enough the kind attitude of survivorship mixed with pushing us all to do more, be more clever and resourceful, to help more people survive. My experience, anyways, is that this attitude is very different when talking about a non-mental illness that might take one's life vs. a mental illness that might take one's life. Source: A Leukemia and Lymphoma Society Light the Night Cancer Walk, Dave Overcash on Flickr

When we talk about mental illness, there is not nearly often enough the kind attitude of survivorship mixed with pushing us all to do more, be more clever and resourceful, to help more people survive. My experience, anyways, is that this attitude is very different when talking about a non-mental illness that might take one’s life vs. a mental illness that might take one’s life. Source: A Leukemia and Lymphoma Society Light the Night Cancer Walk, Dave Overcash on Flickr

In contrast, we assume – without a clear basis other than that we believe that people are responsible for their mental illness in a way that people are not responsible for their physical illness – that mental illness cannot be terminal (maybe, excluding dementias, although I think we mostly consider dementias neurological and not psychiatric).

That basis – the belief that people are responsible for their mental illness – is a deeply problematic one for a variety of reasons. The fact that psychotherapy can help people help themselves feel better really does not validate that idea – all manner of disorders and diseases are amenable to behavioral “treatments,” not just mental illnesses. Schizophrenia is not only significantly more heritable than, say, hypertension (compare this and this), but although both are amenable to behavioral treatments, behavioral treatments (like weight loss, diet, exercise) have higher effect sizes by far for hypertension. Infectious diseases are not given the stigma of mental illness based on one’s having “chosen” the illness, even though they are clearly essentially completely behavioral, whereas almost no mental illness is considered completely behavioral by scientists****.

The result is that, when we think about some other health problem, that has a death rate, we assume those deaths might be preventable, if we get cleverer and come up with new technologies and new medical practices and new ways to help people with prevention. In contrast, when we think about suicide, we assume that those deaths are preventable, and that nothing needs to be done to prevent them except to coerce people to not commit suicide, to call people who commit suicide cowards, to criminalize suicide, etc. To me, that’s deeply problematic, whether or not one believes one should be able to “choose” suicide.

Moreover, it should be deeply problematic to everyone who is trying to reduce / prevent suicide, as well. It pushes suicide into a deep taboo. And it’s hard to treat something that’s taboo. And, of course, it’s deeply problematic for people with mental illness even when suicide is not a part of the conversation.

So, to me, do I support the policy Belgium enacted? I probably do. But the thing I support far more firmly is destroying stigma around mental health. I believe in it for me. I believe in it for all the friends with eating disorders who saved my life, time and time again, ten years ago. And I believe in it for all my friends who live with mental illnesses that I haven’t experienced in the way I experienced anorexia and so don’t fully understand.

I believe in it for all of you, too, who have never been there, and so who find it easy to pass judgment. At times, I yearned to be back in your blissfulness of ignorance, although today, I include my experience with anorexia alongside all the many things I am thankful for in my life. It made me the woman I am today. I am glad – daily – to survive, all the more because I know my survival was not guaranteed.

* God, what is it with me, I can’t even get past the italicized intro without a footnote. Just pausing here to say that Tania is such a heroine for the AutismFamily. Her particular passion is autistic (she coins “Aspien”) girls and women, and I love her work so much.

** Comment or message me if you know the book. I think it’s one I borrowed from the Jacksonville Public Library, the summer before grad school in psychology, which was the time of my rock bottom with respect to my own struggle with anorexia / disordered eating.

*** And I’m sure I’ve mentioned before how much of a heroine Marya is, and how amazing it was to, if only for a moment, meet her when she was here to speak.

**** Getting overly technical, susceptibility to a wide range of infectious disease is heritable. But again, the heritability of many mental illnesses is far higher than the heritability of many infectious diseases, if not most/all of them.

Embracing Imperfection while Celebrating the Pursuit of Liberty

Celebration of American independence must always have been fraught with complexity and inner turmoil. Our forebears sought a response to the British tyranny of that era, but, having spent all their days as subjects of that crown, they could not have had much knowledge of what life without tyranny might mean*. Our forebears sought to create a “more perfect union,” but they did not create a perfect union, nor have we perfected it with any of the changes we made, in the more than 200 years of our nation.

Harper's Weekly Covering the triumph of the passage of the 13th Amendment. Source: LOC

Harper’s Weekly Covering the triumph of the passage of the 13th Amendment. Source: LOC

We have certainly tried. We have tried through giving voting rights to the landless, the abolition of slavery, reconstruction of the South following the Civil War, women’s suffrage, our many attempts to improve our immigration system, affirmative action, hate crime statutes, and other attempts to reduce the harms of racism, the granting of choice to women, our steps to make sure all may access health care, and most recently, marriage equality and other steps to enfranchise the LGBT community. These have all made our land a better and freer land. Sometimes, they were unalloyed good. More often, they were imperfect attempts.

It cannot - must not - be a sign of our patriotism that we pretend that our errors were right or justified, or that we fail to analyze the weaknesses in our values and actions that led us to commit injustice. Source: Wikimedia

It cannot – must not – be a sign of our patriotism that we pretend that our errors were right or justified, or that we fail to analyze the weaknesses in our values and actions that led us to commit injustice. Source: Wikimedia

Certainly, we have failed, too, and failed not just by doing too little, but failed by refusing to do what was good and just, and by actively pursuing what was and is wrong. Failed in our treatment of Native Americans. Failed, time and time again, in our response to hate crimes, even with all the statutes we’ve put in place. Failed the Tuskegee Airmen. Failed to guarantee equal rights to women. Failed in fighting unjust wars. Failed in our reckless pursuit of the imprisonment of vulnerable populations. Failed in our systemic and reckless increasing of economic disparity. Failed in our inability to lead the world in life expectancy, and not for want of throwing money at the challenge**. Failed in our approach to terrorism. Failed by creating classes of people whose rights we refuse to recognize and pretending that this is good or true.

Interestingly, when this video is shared on Facebook, where I originally saw it, the first minute or so is usually clipped. It’s good, but it’s actually way better with that additional context.

At times and in places, we have led, do lead, and most certainly will be leading the world. At times we have followed. At times we have not only not led or merely followed, but we have ignored the wisdom in proof of better ways embraced by other lands. I was at a wonderful party, last night. A friend mentioned in passing that she had, to her embarrassment, largely ceded the idea of patriotism to extreme conservativism. We talked about how this had come to happen – because I see it in so many people in the Sisterhood, and in other movements of which I am part. How did we come to think that wearing red, white, and blue is patriotic, shooting off loud fireworks is patriotic, but making this country a better place is not patriotic? I ask because so many of the people in my life, these days, are in the nonprofit sector (and in for-profit pursuits) that are actively focused on making the world a better place. I have friends who do this by making sure all Americans can have homes. I have friends who do this by making sure all women can be safe from domestic violence and that all women can have access to healthcare. I have more than a few friends who do this by trying to bring the Autism Revolution. And most of them are cautious about embracing the concept of patriotism.

I quipped that the situation is much like my relationship with organized Christianity, as an openly, proudly, authentically LGBT person. How did it come to be, that if I see a verse from the Bible – even, and often, Jesus proclaiming radical love for all, starting with the self – my mind instantly and rightly goes to fears that this person may be aggressive or even violent? When did Christianity*** become this vessel for hate and this bully pulpit for intolerance, instead of love? This situation is much the same about American patriotism – it is presumed now to be an attitude of haughty tyranny over the rest of the world, secured with our advanced army, our nuclear weapons, our economic might, and now even drones. It is predicated on the idea that we are perfect, that our union is perfect, and that it is our right to rule by force over others. It is, in short, and much as Christianity today is frequently striving to be everything Jesus exhorted against, modern American patriotism is, all too often, everything the dream of our forebears, to live in freedom, to be brave, was not.

We do not know full well the minds of early American heroes or heroines, like our sister Sybil Ludington, or even our even our sisters like Julia Ward Howe, who left behind a lot more of their thoughts in their words and speeches, but it does rather seem that they did not see bravery as something relegated only to soldiers, but rather, as a fundamental American virtue.

We do not know full well the minds of early American heroes or heroines, like our sister Sybil Ludington, or even our even our sisters like Julia Ward Howe, who left behind a lot more of their thoughts in their words and speeches, but it does rather seem that they did not see bravery as something relegated only to soldiers, but rather, as a fundamental American virtue.

And beyond just recognizing the tremendous injustice of this, how do we take back the night?

Certainly a great claim to patriotism lays at the feet of all the men and women who have fought, shown valor in combat, have risked and sometimes met death on the battlefield. Although I love peace, and I never myself served in this way, I recognize the need for their bravery, and I celebrate it. I do not see a contradiction between my love for peace and my love for our service-members. The two enhance each other. But I also recognize that, alongside these brave souls, countless other Americans are, everyday, fighting to make this country great, and even if they do not risk untimely death, in dedicating their entire lives to this country, they, too, ultimately die in service of it.

In this light, it seems, to me, deeply unpatriotic to me to recognize this day by mere waving of a flag, by engagement in braggadocio, to make idle claims that our country is the best in the world by birthright and as a privilege, and not a country that can be the best in the world because we make it so. In short, it seems deeply unpatriotic to me to recognize this day in any way other than to say that I love this country sufficiently well that I am willing to live and die to make it great, and that I do not merely offer this service as a hypothetical, but I engage in it, every day.

What I am asking you, today, is to consider changing your approach of shying away from the conversation around patriotism. To tell the truth, if you are one of us, in trenches or lofty estates, fighting every day to make this country great, patriotism will do no good to our mighty flag until you are an open and proud patriot. Your patriotism must not mean that you ignore the imperfections in our union, or that you do not fight to make this union more perfect, but rather precisely that you study and learn these imperfections, and you devote your life to righting them as best you know how.

And, although we can, should, must – always – be mindful of the sacrifices so many soldiers and others have made around and before us, so that we could live in the land of the free, we must recognize that living in the home of the brave is not a privilege granted to us by their sacrifice, but a sacrifice demanded of each of us, every day of our lives. In that recognition rises the great hope of this most unlikely of nations that we call home. In that way, declaration of independence becomes not a static event  some 239 years ago but a living call to arms to all of our people. And that is patriotism.

* I argue previously that this conception is much better than the currently widely accepted tradition of interpreting, for instance, Rousseau, as making a claim that freedom is innate and that we know how to be free, instinctually, but get tricked into chains. No, freedom is a technology, and is the most shining innovation humanity has created. There is also great danger in engaging in a presentist attitude that the “founding fathers” (or Jesus, or anybody) would think precisely like I do about freedom, or about anything. However, our forebears – not just Washington and Franklin, but many, many more of them – clearly did conceptualize governance as being a thing in which one actively participated, not a thing done to one. They saw freedom as a thing not just worth believing in, but worth thinking about, meditating on, advocating for, and yes, fighting and risking their lives for.

** We are, embarrassingly, not only not first, but thirty fourth in WHO’s ranking of some 200+ states.

*** Christianity as an organized entity, or as many organized entities. Not Jesus – I have commented on this in great detail, already.