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 PEOPLE USING FACILITATED COMMUNICATION HAVE MADE ALLEGATIONS OF SEXUAL ABUSE. SOME HAVE BEEN SUBSTANTIATED.

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.

More on the Link between Autism and Violence

I’ve blogged on this in the past, so I won’t go into too many details now. There is a link.

I’ve also recently put up a survey about intimacy that included some questions about abuse. The numbers show how often we face this type of mistreatment (yes, I’m aware of the limitations in my methodology; that said, the results match remarkably well with “real” research) – 80% of autistic respondents indicated that they have been abused.  FOUR OUT OF FIVE.

We die in bad confrontations with police (particularly if we don’t or can’t speak), where we did nothing wrong other than being unable to communicate with police.

Too often, we are murdered by caregivers, parents, and family (you know, the people who are supposed to have our best interests in mind) – but it doesn’t stop there. When it happens, juries and judges say they can understand why we were murdered and give a light (if any) sentence to the murderer. You see, it’s so horrible to raise us, that of course people would murder us. Or something like that. Other times, we’re told that murder of autistic people is a “mercy killing” because nobody would want to be like us. Of course we’re not asked. It would be wrong to try to link being a parent or family member to being a killer.

And there are plenty of us who kill ourselves. My first serious attempt was in 3rd grade. If every day of your life was filled with the abuse from schoolmates (I could say, “neurotypical school mates” but I don’t believe neurotypicals are a slave to neurology when it comes to violence, despite the fact that it was typically neurotypical students doing the abuse).

Like other minorities, when we’re killed, it’s often preceded by torture. Remember Steven Simpson, who was murdered by being doused in oil and set on fire during his own 18th birthday party. They changed the title of this article, but you can still see it in the URL: http://www.dailymail.co.uk/news/article-2166327/Autistic-teenager-Steven-Simpson-dies-burn-injuries-tanning-oil-prank-went-wrong.html – “Dies from burn injuries during a tanning oil prank that went wrong.” Uh, no. Having anti-gay obscenities written on your body and then being doused in oil and then having your genitals set on fire is not a prank. Being doused in oil and set on fire is a torture. This is the very definition of a hate crime. What’s the punishment for lighting someone on fire, leaving the scene without calling emergency services, not trying to put the fire out? What is the punishment for hearing someone scream in total agony? In the first-world country where this happened, the penalty is nothing for most of the accomplices and 3 1/2 years for the worst of the accomplices. Yet, it is reported as a “prank” and this light sentence is handed out. Yes, there’s a link to autism and violence: you will walk free after just a bit more then 3 years in jail if you light us on fire in England (the USA is no better when it comes to sentences handed down). Lest you think that the UK is just light on sentencing, check out this robber, sentenced to 13 life sentences. Now, this robber is obviously a bad man who needs to go to jail, who did incredible harm to his victims. But it should be noted that he didn’t kill anyone.

Yet autistic people are the ones who are need to be prevented from owning guns, who are a risk to society, who are supposedly (without any evidence whatsoever backing this up) likely to kill you. Uh, no.

My AACC Presentation – And Some Survey Results

I’m not going to go into great detail about the survey I asked for help with (although if you’re willing to participate still – and you don’t have to be autistic – please do!), but I will give some general findings so far:

  • Most of us (autistics) have been abused. This aligns with research, and, as expected.
  • About half of us (autistics) who have had an intimate relationship have been abused by someone in an intimate relationship. I’m not yet aware of research on this.
  • Non-autistics also have seen a lot of abuse, although it’s not as common – their numbers are about half of that of the autistic population.  This aligns with research.
  • A substantial portion of us identify as having a non-binary gender identity. This aligns with research.
  • A substantial portion of women identify as bi, asexual, or other non-heterosexual.  Substantial enough that heterosexual is a minority among autistic women. This is a somewhat surprising finding, although it was expected that non-straight people were more common among autistics, particularly autistic women.  It’s a bit inconclusive for the men so far. There’s some research on this, but it’s also inconclusive (for both men and women).

I’ll put some more results out in a while – I’m still hoping for more responses to the survey.  I really appreciate people taking the time to take the survey and leave comments on it – the comments in particular have been helpful as I prepare the talk. The more people that comment, the more interesting the results will be for the entire community!

At AACC 2014, I’m going to be presenting, “Dont touch me there: Intimacy for Autistic Abuse Survivors.” This will talk about both sexual and non-sexual intimate relationships (obviously for people who want an intimate relationship – not everyone needs to want this), with a focus on techniques, tips, and ways of managing intimacy for people who have faced abuse that may make intimacy difficult. We’ll also talk about our rights in relationships – what things can we expect to have in a relationship with a non-abusive partner. I’m also going to talk about some partner issues for people with abuse – such as the common fear in partners that they’ll do something that reminds the survivor of past abuse, which is certainly not what any loving partner wants to do. I’m also going to include topics on autistic differences, as for autistic abuse survivors, both autism and abuse impact what makes an intimate relationship enjoyable to us. I hope to be respectful of differences people have in religious background, sexual orientation, and gender identity.

I’m really looking forward to this because I feel this is a topic that’s critical for us. We have a lot of hurt people who want to have intimacy (sexual or non-sexual) with other people, but find it difficult because of what has been done to them in the past.

I also recognize that this is only one piece of the puzzle – finding someone for a relationship is another key piece of the puzzle, but I’m not going to spend much time on that, since I don’t have many tips of things you can do (other than being yourself and finding completeness in yourself).

So, if you end up at AACC 2014, I’d love to see you at this presentation. And I certainly would love to know what types of things you’ve found helpful in intimate relationships if you’ve been abused (or even if you just have autism). What techniques or tips or advice do you have for others who might have difficulty in a relationship because of abuse or autism?

Can You Help Out? A Survey.

At the Association for Autistic Community Conference 2014, I will be giving a presentation on intimacy (in the general sense of relationships, not just the sexual sense) and autistic people, with a particular focus on how abuse survivors can honor themselves and enjoy sharing intimacy with someone else.

This is a huge issue in the autism community, and something I feel pretty passionate about – that we can have great relationships as autistic people, even as autistic survivors of abuse. Abuse is a huge issue for our community – if I meet an autistic person, the sad reality is that they’ve probably faced abuse.

If you’re willing and able to answer a survey about (in fairly general terms) your views towards and general experience with intimacy, I’d love you to help me out by answering the survey. You don’t need to be autistic to answer the survey (in fact, I’m hoping plenty of non-autistic people answer so I can compare experiences during my presentation).  Note that I do ask if you’ve faced abuse (but not the specifics), so please don’t go here if it’s going to be too much for you. The survey is anonymous and the results will be used as part of my presentation.  You can get to the survey by clicking here.

Thanks for your help!

More on Brooks Gibbs & the Kalman Bullying Prevention Hogwash

I wrote a bunch yesterday.

I’m not going to go through that again, but I do notice that the Brooks Gibbs’ program page is now returning a page not found (as it appears the rest of the site is also doing).

So I’ll give a new link, so long as it remains up.

And I’m going to do something I pretty much never do: I’m going to warn you that these videos are decidedly unplesant and you probably don’t want to watch them if you’re not somewhere that you can yell at your computer. You also don’t want to watch them if you can’t, right now, deal with teaching and role playing that reflects what too many victims are told when they are told that they, not the bully, is the problem.

Here’s the link to the videos.  Remember, Brooks Gibbs is paid by schools worldwide to “teach”. Also remember his qualifications – Brooks Gibbs went to a right-wing Christian unaccredited (edit: nationally, but not regionally, accredited, which isn’t a great thing – regional is generally what you want) college that doesn’t have degrees in education, childhood development, or psychology.

In “Lesson 5”, you’ll even see a guest appearance of Izzy Kalman, the person who designed this “Buddies to Bullies” thing.  I confess I didn’t watch all of them.  Lesson 5 was awful enough.