Accusations of Abuse, Guardianship, and Community Response

Recently, the story of Sharisa Joy Kochmeister has been the focus of much attention in the advocacy community.  And I’ve stayed silent on it, because, frankly, I don’t know the facts of the situation.  But I can’t keep doing that.

My understanding of the background of this – which is open to any and all corrections people may have – is:

  • Sharisa is a 30-something adult
  • From a Denver Post opinion piece (not an investigative article), “The ordeal began in March when her father was accused of abuse when he was seen in a Denver hospital using his finger to clear his daughter’s throat after she had vomited. She kicked him. He pushed her and it was caught on video.”
  • The father was accused of Manchausen by Proxy. This basically means that Mr. Kochmeister was suspected of making Sharisa ill.
  • While the father has not been charged with a crime, the county where Sharisa lives has kept Sharisa’s parents (and indeed most other people) from visiting her.
  • Sharisa is unable to communicate without her father or sister being physically present and possibly facilitating (through actions such as holding a communication device).

Most of the comments, petitions, and advocacy pieces I’ve seen publicly start from the assumption that the abuse allegations are false, for several reasons:

  • People personally know the parents and think they are good people.
  • That accusations of Munchausen by Proxy are often wrong (For instance, in Where is Sharisa Joy Kochmeister, there is a section on false allegations of Munchausen by Proxy with the leading sentence in bold saying, ”Beware the accusation of Munchausen by proxy”).
  • That criminal charges have not been filed against the father.

I’m uneasy with this logic, and I want to explain why. So let me go through each of these three points.

Her Parents are Good People

Perhaps.  I don’t know them, and I’ve known some people I thought were wonderful that turned out to have some really awful, evil parts of themselves.  For instance, one of my best friends in college was recently found guilty of molesting his daughters.  I never would have predicted that, but the evidence was extremely strong and convincing, and I’m glad his daughters are no longer in his care (he is currently serving a long prison sentence).

So I can’t comment on whether or not the parents are good people. I will say that I’m concerned and saddened that any disabled person can communicate only through a very small number of people (or, in the worst case, one).  I am concerned that Sharisa is unable to communicate through anyone but her father, for reasons I’ve written about in general terms elsewhere – how do you report abuse if your abuser is always there when you communicate?

I’m not dismissing her ability to communicate.  But I know that influence, particularly in abuse, and particularly when it’s done by someone who has the potential to do great harm in retaliation, is a powerful thing. And I also know that the vast majority of abuse victims, when asked why they didn’t report that abuse, say the same two things: either they felt they wouldn’t be believed (because the abuser is respected or seen as a wonderful person) or that the abuser can make things worse for them.  We’ve seen both with Cosby’s accusers, who felt they wouldn’t be believed and that Cosby could retaliate and essentially keep them from their dreams in modeling or show business. If this is hard for women who are, in some cases, thousands of miles away from their abuser, imagine what it’s like if that separation isn’t possible.  It’s also not just abuse – imagine other decisions, such as becoming sexually active, deciding whether or not to seek an abortion, or discussing treatment options for STDs – would you want to have those conversations with a parent in the room?  Unless you have a particularly unusual relationship with your parents, probably not.  We are all influenced by people we are around, and that influences what we do and don’t say. It’s one of the reasons it has taken me so long to write this – but it has become too important not to.

When my wife was hospitalized a couple years ago, I remember how I was asked to leave the room for a few minutes, being told they needed room to transfer my wife into the bed. I asked her they did while I was gone, and she said that, yes, they did transfer her to the bed, but that they also asked her if her relationship with me was good and if she wanted me to be there – she was kind of surprised by the questions (I don’t think there was any suspicion of abuse by me, I believe this was asked to nearly all patients). I’m not offended by that in the least – for some abuse victims, the only time they have the chance to be protected from their abuser may be when they are hospitalized, and I thought it was one of the excellent things the hospital does – if it gives just one abuse victim the courage to speak, it is an awesome way of doing business. It is absolutely something a hospital should do. Likewise, it’s important for abuse victims to have means of communicating that don’t involve their abuser’s presence or (real or imagined) control.

Accusations of Abuse are Often False

This simply isn’t true, but even if it is, it does not mean that real abuse doesn’t exist. Too often we hear about children (I’m not implying Sharisa is a child, but most of the time we hear about state-investigated abuse, it is regarding children) that were inadequately protected by the state after abuse allegations were made.

There are cases where Munchausen by Proxy is real – we should not dismiss this as merely claims that the evil state makes against parents of disabled kids. There is evidence that it may be over-diagnosed in cases where the caregiver is not the cause of the illness, and there is a real illness, albeit likely a hard to treat one.

But, there are also real instances where people are harmed by fictitious disorders imposed on them.  According to the Cleveland Clinic, approximately 1,000 cases of reported child abuse per year are related to this.

It is irresponsible for advocates to say that abuse did not occur when they do not have the full evidence. Abuse can happen to anyone, and abusers come from all social strata, all races, all sexes, etc.  It is not uncommon that abusers are well regarded and seen as “the least likely person” to abuse another. So all allegations of abuse must be taken seriously.  In fact, this is something the FC (Facilitated Communication) community has been stressing – while there was controversy regarding apparently false reports of abuse by facilitated communication users, there were also real cases of abuse that were investigated and found to be true, backed up with evidence in addition to the victim’s own words. Allegations of abuse must be investigated, and anyone that says otherwise is not an advocate for vulnerable people.


Some individuals have made allegations of abuse, but there is no evidence that the numbers of allegations by individuals using facilitation is proportionally different than the numbers of allegations made by speaking people. In a survey made at the SUNY Health Sciences Center, it was found for a given time period that of 6 case in which individuals alleged they had been sexually abused, for 4 of them there was physical evidence they had been abused (Botash, 1993). Cases can lead to court convictions (Randall, 1993) and/or confessions by the accused. As with allegations made by the nondisabled population, some allegations may be unfounded and others simply impossible to prove.

The above is from Douglas Bilken, a leading FC proponent, writing “Facts about FC“.  Full citations are available in the link.

Regardless of your views on FC, allegations of false abuse don’t mean that real abuse doesn’t happen. For Munchausen by Proxy, in particular, what is important is whether or not incidents of more severe sickness are associated with the presence of the accused. So there is one question that is relevant here, but which the answer is not known: Have any of Sharisa’s medical conditions improved with the absence of her family? That alone doesn’t prove that abuse occurred, but it can help substantiate that the family is not the cause of any of the symptoms if all the symptoms continue despite the absence of family.

Likewise, I would think it inappropriate to say that Sharisa’s parents did abuse her – most of us (and everyone I’ve seen speaking publicly, with the exception of Sharisa’s family and Sharisa in the presence of her father) don’t have enough knowledge of the situation.  And we should see false allegations of this kind or terrible. Instead, I believe we should say what is logically required: We don’t know.

Criminal Charges have not been Filed Against Sharisa’s Father

This is true – there are no publicly known charges against Sharisa’s father, and is important for everyone to remember. That said, even charges don’t prove someone’s guilt – that’s why we have a trial system. But the American justice system is designed to only convict people when the judgement is that they are “guilty beyond reasonable doubt”.  Thus prosecution may not occur in all cases where a crime has been committed, particularly if a prosecutor believes it is unlikely a jury would agree “beyond a reasonable doubt” that a crime has occurred.

That said, there is a court process that determined Sharisa’s current placement and prevented Sharisa’s family from visiting freely.  We don’t have the information of what was presented at those hearings, so it is irresponsible for us to confuse lack of criminal charges with lack of a crime. Again, we simply don’t know. It could have been a huge miscarriage of justice against Sharisa and her family, but it also might have been justified in light of the evidence. We don’t know.

What Needs to be Done

So, we don’t know if abuse occurred or not. If it did, she should not be forced to live with her abuser. But her opinion still must be respected. People who are competent are allowed to make bad choices.

If it didn’t occur, where should she live? Where she wants to, clearly.

Unfortunately, the county believes she isn’t competent, thus someone else gets to make decisions like where she lives. On top of that, she is only making statements about where she wants to live in the physical presence of someone that may or may not have abused her. This makes it very hard for the county or anyone else that wants what is best for her, and doesn’t know if abuse occurred or not, to know what she truly wants.

I wish she could communicate without a family member in the room. If she could, and the family’s statements are correct about this not being a case of abuse, this issue would likely be resolved.  If she could communicate without a family member in the room, and was as courageous as I believe her to be,  she could affirm or deny abuse allegations. I have long believed that the primary goal for an autistic person’s communication should be that they are able to communicate in a variety of situations, with a variety of other people around, and using a variety of techniques. I stand by that.

But of course it’s not always possible. What is best is not always what happens. Clearly this is one of those cases, and someone’s ability to live where they want to is on the line. If you can’t communicate (which is what the county clearly believes), you can’t direct your life.

She was placed in a nursing home for a while. Nursing homes aren’t the right choice for anyone. I could write more on that, but other advocates have written plenty if you want to know why.

The county must expend the resources necessary to provide an environment as conducive as possible to communication. This means she needs the electronic devices she uses to communicate to be available and maintained. She needs to be assessed by experts who have a presumption of competence. She needs to be listened to when she communicates with ways other than language.

Last week, Disability Law Colorado (the P&A agency for Colorado) issued a statement that said that this is happening, and that the situation is more complex than media and many advocates have said it is. Of course they could be wrong, lying, or have a grudge against Sharisa or her parents.  But they also may be right.

That doesn’t mean we should just trust them and remain silent. We should demand that Sharisa can fully participate in the community and that the State ensures that everything possible is done to allow her to communicate.  The abuse allegations should continue to be investigated: in particular, has any part of Sharisa’s medical conditions shown improvement since her removal from her family? Was the video evidence so strong that it, by itself, justifies removal of Sharisa from her family?

There are lots of questions. And this is not a case of child abuse. When a crime is committed against an adult, and is not a sex crime, the public does generally have the right to know the details, so that we can make informed opinions.

Regardless, our advocacy must be first and foremost about Sharisa and her desires. Not the state’s. Not her parent’s. One side says that her communication desiring to be back at home is either not hers or is influenced by her father. The other side says she wants to be home. What Sharisa wants is what is important – not what her father wants, and certainly not what the county wants. And our advocacy should be focused on making sure she has as much of an opportunity to voice her views without a shadow of influence as possible. I fear that may not be possible, but I really don’t see any other way to get the resolution that Sharisa needs while her communication is being dismissed, as it is now. Lack of apparent influence is important (and I use the term in the general sense – the same thing would likely happen if a person speaking with their vocal cords only talked with someone that was considered a potential abuser in the room – it might even strengthen the case that abuse is occurring). I hope it’s possible and we need to advocate that she be given every opportunity to communicate this way. Starting with 24×7 availability of devices she’s used in the past to communicate and support people that are not making presumptions about her parents. Most of all, they must not presume that she is not competent.

Certainly if you have other evidence that the rest of the community does not have, absolutely use that in your decision making. But the rest of us need to be responsible and to use the evidence we have, realizing we don’t know several really critical pieces of this story. I am not saying her parents have done any wrong. Nor am I saying they haven’t. Because I don’t know, beyond saying we need Sharisa’s voice a lot more than mine in this discussion.

Making the Privileged Feel Better

What kind of things do physically disabled or blind persons need?  It’s simple: access to society.  The specifics are different – the wheelchair user might want to be able to go to school or work without having to literally drag themself up a step.  And the blind person might desire websites that are usable with screen readers.

Of course, these aren’t the only things desired – there’s a lot of inaccessibility in society as a whole that needs to be cleared up.

So, what do social justice minded, but non-physically disabled, non-trans, and non-blind people come up with? We need to worry about our language. We need to avoid saying, “Let’s run out to the store,” because that erases the existence of someone who rolls out to the store. We need to avoid saying, “Did you see that movie?” because that’s abelist and erases the existence of people who experience movies without using sight.

And that sounds good.  It sounds good to say, “Did you experience that movie?” or “Let’s go to the store” rather than the abelist, yet common, alternatives.

Yet, I’m going to cry out and say, “ENOUGH!”  Not because I think these are bad things to think about, but because, too often, what is behind these suggested changes is a bit more sinister than it appears. Sure, it could be a sincere desire to think about others. But where it fails is in actually listening to others.

For instance, my (albeit limited) circle of friends includes a couple of blind people who “watch TV” (their words, not mine), and neither would notice (or care) if the TV picture was present or not.  My wheelchair using friends “run to the store” occasionally, in their words. It’s important to listen to their words.

Sure, there may be people who are blind or physically disabled who dislike words like “see” and “run.”  But most blind or physically use these words exactly like the rest of us: as something other than literally seeing or literally running.  Few non-physically disabled people literally run to the store: we hop in our cars and drive, or, if we don’t drive, walk or use transit.  But little actual running is involved. As for “seeing” TV or  a movie, a better word would likely be “experience” to reflect literally what is going on, but seeing, in context, basically means the same thing.

Now, I recognize I’m privileged, and could be an ablest pig now – and hope that people (particularly people who aren’t privileged in the same way) speak up and let me have it, if they believe it’s appropriate.  I can demonstrate my true character by listening to what is said.  But, at the same time, I do believe I’ve listened to disabled people and that this type of language is not viewed as insulting, as it seems to be used by the vast majority of people for whom it is supposed to be insulting.

It’s also – ironically – appropriated words like look, see, run, walk, etc, which have a general meaning, and made them into words that can be used only when referring to the privileged classes! In essence, privileged people have decided when these words are appropriate or not, rather than allowing the non-privileged people to tell us what they find offensive and how we should respond to that.  That’s both arrogant and dismissive, and the utter opposite of respect.

But it feels good.  It feels good to look at yourself and say, “I’m more progressive and social justice minded, because I know there are wheel chair users in the world, so I avoid using phrases like, ‘take the dog for a walk’ or ‘running to the store.'”  It’s the same old thing that always makes privileged people feel good: being better than someone else (in this case, it’s mostly the other privileged people who aren’t so liberally minded, but it is done by “walking” over the top of the very people for whom this language is supposedly changed for).

I’ve written about this in a different context – the use of the prefix “cis-” to refer to non-trans people.  While I can find some trans people who do feel people should use the cis- prefix to identify themselves, and it’s a lot harder to find wheelchair users or blind people who object to the language such as “run” or “watch”, I find a striking similarity. I don’t like the term cis- because I feel it erases the existence of binary-identified trans people, particularly post-op transsexuals, and their self-identity. But I get shit for that stand. Ironically, I’d say 99% of the people who have a problem with my word choice are binary-identified and passing as – and thus taking the role of – someone with binary, “cis-gender” privilege.

Now, I recognize the social implications and difficulties faced by minorities trying to express upset towards something the majority does.  So I recognize that even if I was being offensive to trans, blind, or physically disabled people (among others), it’s very likely they would say nothing to me about it. Thus it would be wrong to assume that I’m not wronging them. But it would be equally wrong to not listen to the people who are speaking and advocating from a minority group and to find out what their concerns are, rather than simply assuming that I know what their concerns are, and thus can tell people how to treat “those people” with respect.

It’s actually got a lot in common with the “autistic” vs. “person with autism” debate, which comes down to whether or not autistic people get to define their terms and decide what is or isn’t offensive to us (most of us have decided “autistic” is not offensive).  Yet, well-meaning, socially minded people will actually argue with us and tell us we’re wrong – that we should be offended by “autistic” and should be glad to be referred to with the much-more-respectful “person with autism” label. In other words, they know best about our lives and experience.

Well, they don’t.  No matter how good it makes them feel to think they do.

What’s a Safe Space?

Previously, I’ve written about what I see as the overuse of the word “trigger” – how it has essentially become code word for “something I have a strong negative reaction to” and thus not at all the original intent of the word (which was to label those things that, when present, could cause a person to become a danger to someone or to lose the ability to manage their life for a time).  That overuse means that people who feel strongly about some subjects and people who have serious risk to themselves are characterized the same – and that’s a disservice to people who need to explain that, no, this isn’t just something they strongly oppose and have anger about, but is something they can’t be around – not because they don’t like it, but because they’ll lose control.

There’s another term that has morphed over the years: safe space. This term has evolved over the years – I’m going to discuss that evolution and how safe space might be applied by an organization that isn’t only designed to be a safe space, if that organization would want to. I’m going to use the example of a church service for this, but obviously it would apply to other contexts.

Th term, “safe space,” seems to have originated with domestic violence shelters and outreach – the goal was to provide a physical “safe space” where a victim of domestic violence would be safe from their attacker.  These spaces might not have well publicized locations (so the abuser can’t find it), would not identify people staying there, would have procedures for people arriving and departing the space without being tracked, might have security staff, and would be understanding that people who have been abused in their home will feel uneasy just about anywhere after their sanctuary was invaded.

Even if you wanted to, you couldn’t make something like a church a “safe space” in this regard – it probably wouldn’t have security personnel, a hidden location, and procedures to keep the identity of attendees secret, nor would other attendees be well-vetted before arriving.  They might understand domestic abuse and do what they can to keep a victim physically safe, but a normal Sunday service wouldn’t be a safe-space, no matter how great the church, in the original “safe space” sense, without substantial changes.  That said, that doesn’t prevent them from being decent and using some sense – things like child release policies (make sure children in child care are only released to an authorized person, for instance), ensuring that ushers and others know about legal orders or the need to ask certain people to leave (with police help if needed) if they visit the service, and respecting the idea that the victim is in a very vulnerable and hurt state.  A church might even offer key sacraments through a visit to a truly safe space. But, regardless, it’s not likely to be able to make the service itself a safe space in the same way as a domestic violence shelter may, no matter how well intentioned or how good the people are.

Later, the term, “safe space,” became used by feminist and LGBT groups.  Both used the term to means something different than the space used by the domestic violence safe spaces.

Some women’s groups used the term to mean, “places where we are safe from oppression by men.”  This was some of the original intent of women-only (or womyn-only) space – the idea was that, generally, the people oppressing women were men, so without men, there would be less oppression.  This greatly simplifies the concept, and it is quite a bit more nuanced than this would imply – and I know that (and you should too before you just repeat this!).  However, two things came of this – first, obviously some women can internalize prejudice and thus perpetuate prejudice against themselves and other women.  Secondly, creating such a space meant creating a definition of who could be there – and any such definition will be controversial (for instance, is a trans woman allowed?  Whether or not she’s had surgery?  How about an intersexed person?  Or a trans man?).  There have been many fights over who is a woman (I’ll also add that women aren’t the only marginalized community to fight over who is part of their community).  So this definition has been changing over the years, bringing it more in line with the LGBT definition of safe space.

There’s some purposes served by having a space for a marginalized community – it can be valuable for growing a community, giving people a sense of comfort the outside world lacks, and providing freedom for people to say and do things they might not do in the wider world.

But of course this, too, isn’t a definition of safe space that could be applied to our hypothetical church service – unless the church was to exclude all whites, men, non-disabled, etc, people to make it a safe place in this sense for marginalized populations (such as non-whites, women, disabled people, etc).

That takes us to the LGBT definition.  I remember being a kid in school when this started in my area – certain teachers would have a pink triangle (pointed down). I didn’t know the pink triangle had roots in LGBT oppression and was now a symbol of the fight against that oppression, but I was told it symbolized “safe space.”  That is, it was a place where an LGB (I suspect most safe spaces weren’t ready for T at the time) student could go if he or she needed someone to talk to. It would be a place where the person’s sexual orientation wouldn’t be challenged, nor would the person be told they were a sinner. There was physical safety as well – the person displaying the triangle wasn’t going to attack someone who discloses homosexuality.

Being older, and with more understanding of the LGBT movement, I now realize that it was meant to be a place of support, to give the student a place to have a shoulder to lean on that wouldn’t be judgmental, wouldn’t gossip about it, and maybe could help the student find ways of dealing with the discrimination they face. There weren’t a lot of places where someone could go without hearing about the old testament or telling someone who might gossip about it.  I also learned the LGB safe space concept started not in classrooms, but in corporate America, as a way for allies to show their support in a more practical way.

Other oppressed populations have also adopted this concept (including many women’s rights organizations, replacing the original definitions used by these types of organizations).

I believe this last form of safe space – the LGBT movement’s definition of safe space – is the most common definition of safe space used today.  Today, when someone says, “safe space,” what they are probably saying is, “Certain beliefs will not be expressed here, nor will people be judged for certain actions. There’s a community standard in place.”  For example, a disability-rights safe space might prohibit blatant ablism and might require people participating to understand the basics of disability rights already (so that each new non-disabled person joining the space wouldn’t need to be taught disability 101 by the disabled people in the space who are likely very, very sick of doing this teaching with people).

Again, with our hypothetical church service, making it this type of safe space can be difficult. Let’s continue with our disability-rights safe space concept. Maybe the church does decide that they will not allow, uncontested, the discussion of why disabled people should be in institutions. That won’t however stop someone from coming off the street and raising the topic until someone stands up and says, “We don’t do that here” (which will probably raise all sorts of other problems, like how the person is disabled themselves or how they have a disabled family member). Yes, hopefully others will step up, but should the person be removed from the church or should they be educated? If educated, that is one of the things that safe space is supposed to protect the marginalized person from having to do – it gets old to have to give disability 101 training to everyone! But of course some people do need disability 101 training. Maybe you can get non-disabled people to do that training, but that training will take time. What do you do in the meantime?

I believe strongly in value of all the types of safe space listed above, and feel that it is important to have these spaces for people. But, at the same time, I also believe it’s important to define exactly what we want out of our safe spaces – particularly when extending this to spaces that aren’t dedicated safe spaces in the way a domestic violence shelter may be (such as our hypothetical church service). How do we make that church service (or anything else) a safe space? What does safe mean? Does it mean physical protection from your abusive husband? A place where people who you won’t run into a person who shares a common characteristic with your most common oppressors?  A place where you will not have to listen to people’s “ism’s”, such as racism, ablism, and misogyny (an -ism by another suffix)? Or is it a place where you don’t have to explain to every single new person how to interact decently?

It’s worth having these discussions. And certainly, once people are aware of an issue of oppression or safety, they should consider it in the spaces they have authority in – certainly no ally of the LGBT community, for instance, wants to be part of a place that allows homophobes to spew hate. Or which requires the one person in a commonly oppressed group to have to educate everyone in the organization, continually. Or to allow a domestic abuser to gain access to children he (or she) abused. Nothing is perfect, but we can get better.

At the same time, it’s important to say what we want when we want safe space. What, exactly, are the parameters for our space, and how is this different from just wanting a space where everyone is like us or nobody disagrees with us? It is different, but it’s important to be able to explain why and not just use the code word “safety”. Everyone wants safety, but we all have different ideas of what “safe” means. So we need to be explicit.

In the meantime, we need to keep working to eliminate the -isms, to educate people about different kinds of people, and to make sure abuse victims really are safe from their abusers.

Why Don’t Kids Report Bullying?

HRC posted a piece on why kids don’t report bullying to school employees.  The article’s a good read, based on fact, but it brought back why didn’t report bullying.

It was simple: reporting the bullying didn’t help.

I was kicked, hit, sexually assaulted, burned, choked, manipulated, humiliated, insulted, excluded, scapegoated, and teased for 13 years of public school.  13 years.

The other kids figured out quickly two things. First, they figured out that I was different. I didn’t act like the other kids. I don’t remember all the names, but I know in my early elementary years, “retard” was a favorite. And in my high school years, “faggot” was a favorite. But it didn’t particularly remember what the name or label was, or whether they were accurate or not. An unathletic, tiny, weak, autistic kid is an easy target. I was an easy target.

I never will be able to express what the humiliation felt like every day of my school career. I just wanted to disappear. I just wanted to be ignored. Anything would have been better than the humiliation.

Even in early grades, I learned I was the problem. I heard that not just from other kids, but from the school itself. I was the problem. I was the kid that didn’t know when to be quiet in class. I was the kid that would get distracted and look out the window. I was the kid that would leave class for no apparent reason (not being able to cope wasn’t a good reason, after all).

I spent two weeks in isolation in elementary school for telling the truth to a principle – that I didn’t vandalize a bathroom. The kid who “witnessed” this destruction (who later I realized probably did it) was thanked for his truthfulness. I was put in a small room with no humans for two weeks. It took me 20 years to simply be able to pee in a public bathroom after that. I wasn’t believed. That was typical.

In Junior High, a teacher watched a 9th grader who was much bigger than the 7th grader I was (well, they were all bigger than me in Junior High – I started Junior High in the .1 percentile of weight) literally lifting and throwing me to take my place in the lunch line. The response? We were both given detention. For fighting. (as an aside, I finally did grow in the 9th grade – and am average height today – something that boggled the heck out of my poor parents trying to keep clothes on me my 9th grade year!)

I remember other times where was the problem when I was bullied. I remember the PE teacher I ran to, fearing the kids chasing me would kill me. I was told to be a man. Again, I was the problem. I remember being sent to a behavior program during the sumer because I was causing too much trouble in class (yes, they sent a bunch of bullies to the same program; you can guess how that worked out for me, although the worst injury I received their was inflicted by a staff member – and, no, I didn’t bother to tell an adult). I remember day in and day out of abuse.

When I reported it? I was the problem. If only I behaved differently. At one point, I was actually told to laugh differently if I didn’t want to be bullied. Even the rare expression of joy was a problem to be corrected.

Most often, the response was to tell me how I could have kept the kids from bullying me. I could have stood up for myself. I could have walked away. I could have told an adult (uh…that’s what I did when I got told this…). I could have…well, it doesn’t really matter. Only rarely were the bullies dealt with – and when they were, they got no more than a token punishment. And who was the bully? Damn near every other kid. And some teachers. I was always in trouble. When the bully got in trouble, it was a “good kid” that did one minor mistake. I get two weeks in the hole for telling the truth about not throwing toilet paper around a bathroom. They get a detention for giving me a black eye.

You learn quickly not to report it when you live through this day after day. I’d guess I reported maybe one of a thousand incidents. Yes, thousand. There must have been tens of thousands of incidents during my school career. Sure, most were minor – minor insults, light pinches, subtle humiliations. But even minor, when you have thousands of these events happening every year to you, it wears you down pretty quickly.

I’d like to say that I was uniquely bullied in school. I do suspect the degree of bullying I received was well beyond the comprehension of most adults (including my parents). I know my parents were shocked when, as an adult, I told them I didn’t vandalize the bathroom in school. They were sure I did it. They believe me now, but it took 20 years to be believed by anyone.

I did tell adults. They just did nothing about it.

And I told in ways other than voice.

I missed over two months of school every year from about 4th grade through 11th grade (in 12th grade, I finally found an adult that would rescue me by allowing me to skip classes when I wanted – unsurprisingly that’s the only year I had a decent GPA).

I failed about half my classes in 8th grade through 11th grade (I not only passed everything in 12th grade, but got a 4.0 GPA; the difference? Being able to escape my classmates).  What kind of kid can earn a 4.0 GPA in 12th grade but fails most of his required classes in 11th grade? It’s simple: an abused kid, where there was at least a partial solution in 12th grade.

Any PE teacher could have watched how the kids picked people for their team. It would have been darn clear that something was going on there. And, no, it’s not that I wasn’t a skilled athlete.

Anyone could have been a hero. Way too few were.

The signs were there. It should have been easy to see. Even when I didn’t speak about the abuse. Even when I had lost hope in the adults.

To the teachers and administrators, I have one simple, simple message: look out for that wierd, small, annoying kid. Nobody else is. Maybe, just maybe, his behavior problems aren’t a desire to torture you. Maybe they are a result of never-ending abuse. Help and you’ll be amazed. The few adults that did listen, that somehow spotted me, that somehow saw something beautiful in me despite the labels and behaviors, they are my heroes. They saved my life. You have no idea how important you might be to a kid. That 12th grade teacher (who didn’t actually teach me!) willing to write me passes to get out of class…she saved my life.

I probably should have told those few adults who actually helped me, who respected me. But by then I was too beat down, and too far from being able to heal. But they still provided me some respite from the abuse. And even that is a blessing.

And when an abused kid – whether abused by adults or other kids – actually tells you about abuse, act on it. You might not hear the word “abuse” used. You’ll probably hear that someone did something to the kid, and it probably sounds like the kid’s blowing it out of proportion and not dealing with things. But maybe, just maybe, you should investigate it and find out if this might just be one of thousands of incidents, and maybe, just maybe, the kid is hoping he can trust. Show your courage and your heart. Show you can be trusted. Do something. It takes a lot to build trust in someone that’s been abused. But show you can be trusted. Show you will listen. And believe. And do.

To that kid: I know it’s damn near impossible to believe me, but you can keep going. Just make it through to another day. I believe you. You don’t deserve this crap. The happiest day of my life was when I left home and traveled 300 miles to college. I had plenty of problems there too, and definitely lacked support (primarily because I had no trust in the ability of others to help me) – heck, I didn’t eat for a week simply because I had no way to ask where the cafeteria was. Not eating for a week was better than being in my hometown. And I did eventually find out where to eat. And I made friends. Yes, friends. People who actually liked me, protected me, spent time with me. What a relief it was to actually have a human to spend time with.

I do know how hard it is. Maybe I had it harder than you, maybe you have it harder than I did. I don’t know. But it doesn’t matter. Torture is torture, and is never okay. I’m hoping you keep going, that you somehow find strength that no human should need to find. But you’ve done it so far. Please, go on another day. There is hope. In your heart, you believe it too. You had to or you wouldn’t have gotten this far. Listen to that, and don’t let your brain tell you otherwise. Even when you can’t see a way out, things can change.

Why the Trans Stuff?

This could also be titled, “Can you explain what Joel has been up to the last year?”  Or “Why is Joel glad Autreat moved from Johnstown.”

Some readers of this blog may wonder why there is the trans-advocacy stuff here.  It mostly started in 2012 with an issue involving Autreat.

In 2012, as a member of the planning committee, I discovered, by accident, that our Autreat venue at the time (University of Pittsburgh @ Johnstown) was discriminatory against trans people (and, most likely, still is).  Essentially, they decided to prohibit many trans people from using the correct facilities for their gender identity and expression (I.E. a transman should be able to use the men’s room; that said, depending on where he is in his transition and with his expression at the time, he may choose to use the women’s room for safety purposes, which should also be respected as this is an issue of safety from assault, not preference or comfort).  The change was made in 2011, despite a pretty good official non-discrimination policy (that includes, ironically, gender identity).  It was proclaimed semi-officially – it didn’t go through the typical rule making process, nor was it put on paper, but it absolutely was enforced and echoed by official statements made by the University.  In fact, it was enforced against a student at Johnstown who arrested for using the “wrong” facilities and charged with indecent exposure.

This was significant to Autreat because research shows that autistics are highly represented in the trans community (for instance, 6% of people with gender identity disorder are autistic according to one study – much higher than one would expect if there was no relationship).

There’s all sorts of commentary on U Pitt’s decision online and in print – most of it revolving around whether or not different advocacy organizations and trans people responded “right” to the discrimination or whether or not the trans person who was arrested was right or wrong. Unfortunately most of this commentary doesn’t actually question the discrimination, and most seems to imply “just wait it out” is the right response when you personally face discrimination – but that’s the typical response to anything that disturbs the status quo from people not personally bothered by the status quo. However, the root of the problem is not any specific case, but rather official statements from the University administration about how trans people would be treated. For instance, a spokesperson quoted by Think Progress said,

As this [policy] applies to use of facilities, a female who identifies as a male, or a male who identifies as a female, may use restrooms or locker rooms of his or her declared gender identity after he or she has obtained a birth certificate designating the declared gender. This practice applies to student athletes as well.

Many trans people, for many reasons, do not have birth certificates that agree with their gender.  Depending on where you are born, you may be able to change your birth certificate simply by filling out a form (no documentation or surgery requirement), by providing evidence that you are undergoing treatment for Gender Identity Disorder, by proof of certain surgical procedures, or, in some cases (such as if you are born in Ohio), not at all.  Thus, this can place people in not only bad, but dangerous situations of being forced to use a facility that doesn’t match one’s gender expression.

As a result of this discrimination by the venue, I wrote a long document near the end of July addressed to others on the Autreat planning committee (see this PDF: The Right to Pee) about my concerns.  I sent it after Autreat 2012 (we couldn’t move Autreat when this was discovered immediately prior to Autreat 2012, so I held off on the formal presentation of my concerns until after Autreat 2012).  The document includes documentation about the decision by the University, responses to questions I predicted people would have about the policy, and samples of good policies (such as the guidance issued by the NCAA, a group that knows a lot about single-gender activities and facilities usage, particularly in the context of college campuses).  I’m publishing it here primarily so that people can get ideas for their own advocacy and also to understand the problem surrounding the University’s statements (which are too numerous to go into here).  I’m also publishing it because Johnstown, Pennsylvania continues to be a hot spot for discrimination against trans people, unfortunately – I suspect in part due to the University of Pittsburgh normalizing discrimination.

A few months after I wrote about U. Pitt’s discrimination to the committee, the University of Pittsburgh in Johnstown still had not made an offer that accommodated Autreat’s dates and other needs to host Autreat, so the gender identity discrimination issue became somewhat moot at that point (the end of November) and a venue search was then begun.  Unfortunately my document and/or it’s presentation to the committee was insufficient by themselves to persuade the committee to begin the search immediately (it did trigger the creation of an ad-hoc committee, which over a year later still hasn’t produced any recommendations and is probably moot now with the Autreat re-organization), so the search was started at the end of November rather than earlier.  That’s a common problem – it’s hard to convince people that discrimination exists, and it’s even harder for even good people to challenge the status quo in areas that don’t fit with their own personal experience.

It was obviously a relief that a different venue was chosen for Autreat 2013.  AFAIK, California University of Pennsylvania does not have any official policy (or interpretation) that would lend itself towards discrimination.  Nor do I know of any trans discrimination issues recently in California, PA.

The PDF document linked above (as “The Right to Pee”) still basically applies to the University of Pittsburgh (all campuses), with a couple of caveats due to changing circumstances.  First, trans students are now supposedly allowed to use bathrooms corresponding to their identity, on the basis of statements made on a “Student Life” page on the U Pitt website:

“The University has agreed, prior to the finding, to allow people to use the bathrooms with which they identify,” Frietsche said, citing a statement posted May 21 on the Pitt web site’s “single use restrooms on campus” page ( that lists the locations of non-gender-specific restrooms on campus.

It states, in part: “The University trusts that members of the campus community and their guests will exercise sound judgment and discretion when accessing and using the restrooms.”

Frietsche, quoted above, is a lawyer for the Women’s Law Project, a group helping represent the campus LGBT group in a complaint against the school over the problematic policy (the above quote was from a University Times article).  However, it’s unclear whether or not “sound judgement and discretion” is the same thing as “allowed to use the bathroom that corresponds to your gender expression.”  The terse and strangely worded statement also leaves many questions unanswered – can a transwoman take a PE class offered to women?  Which locker room is she supposed to use?  Which dorm?  And since this new “policy” is listed only on a site that is specific to one campus, on a page that lists where single-occupancy bathrooms are located on the main Pittsburgh campus, does it apply to other campuses, like Johnstown?

The bathroom policy changed to the current “sound judgement and discretion” standard only in response to a legal complaint by the Pittsburgh campus LGBT group. The University seems to be losing in this (thus far, their motions to dismiss the complaint on have been denied, and the parties were ordered into the current phase). However, that complaint was made to the City of Pittsburgh (which has strong non-discrimination law), and it’s unclear how much influence the City of Pittsburgh would have on a campus located in, say, Johnstown, PA.  After all, unlike most places in the US northeast, there are no protections in Johnstown (or most Pennsylvania communities) for trans people – for instance, it is perfectly legal to refuse a trans person service in a restaurant simply because you don’t like their gender identity or you think it’s a sin and you don’t want to “enable sin.”

The complaint is currently in a reconciliation phase where the two parties are to try to come to an agreement that is mutually satisfying, according to the process for complaints made to Pittsburgh’s Human Relations Commission.  If the parties can’t agree (likely), it will go back to the City of Pittsburgh (and, likely, be appealed to state court by whichever side loses).

Other than this, the situation essentially remains as described in the document.  Trans people still don’t have real rights on the U Pitt campuses, with the possible exception of being allowed to use bathrooms (if the school agrees it was sound judgement) and even then possibly only in Pittsburgh.

So, back to why I care – a significant number of autistic people are trans, and it’s simply not possible to have an autistic event without considering the venue’s attitude towards trans people (or, put another way, whether they have simple respect for people). Learning about this also opened my eyes to how easy it is to unknowingly participate in furthering discrimination against trans people (Autreat certainly didn’t know Johnstown was discriminatory when we signed the contract to have Autreat there, and a lack of prior preparation through policy and procedure caused significant delays when trying to figure out what to do about it).  So it’s importance to be careful and do research, and for those of us who have learned about this to speak up when we see gender identity or expression discrimination.  It’s also important to think through these issues so you aren’t learning after there is a problem, but you learn and prepare ahead of time (that said, this shouldn’t be hard: people leaving others alone in the bathroom should also be left alone – duh – how hard is this to figure out?). As I researched this particular issue, it was pretty clear that trans people routinely face discrimination in all areas of their lives and that the fight for trans rights is – as Vice President Joe Biden phrased it – the civil rights issue of our times.  I’d like to be on the right side of history and to be able to tell the next generation, “I did my part.”

That’s why I care.