I Will Remember

Today is a day of mourning for disabled victims of murder.

I will remember.

I will remember those who lost the battle for existence…
…those who were killed by parents, caregivers, or others
…those who were killed by bullies that pretend to be friends
…those who were killed by taking their own life after years of abuse, harassment, and prejudice.

I will remember.

I will remember those who are still with us…
…who bear the wounds of abuse and prejudice
…who receive little, if any, support
…who were told they are “less-than.”

I will remember.

I will remember for myself…
…that my interests are precious
…that my way of participating is valid
…that my uniqueness is important in the world.

I will remember.

I will not just remember but will be someone…
…who spreads hope
…who takes care of themself
…who loves and be loved.

I will remember.

I will remember not just for…
…those who we have lost
…but for a different world
…and for those we won’t lose.

I will remember.

10 Second AAC on a Mac

Speech can be a difficult way of expressing yourself if you’re an autistic, even if you can sometimes use typical speech.  AAC (Augmentative and assistive communication) is basically any technology or system (including low-tech such as grunting or writing) to communicate without using typical speech. While I’m a huge advocate of low-tech solutions for lots of reasons, sometimes it is nice to have a text-to-speech device. If you have a Mac computer, you already have a basic AAC text-to-speech device – and you can access it with about 10 seconds worth of work.

This is not a substitute for a decent AAC solution that fits the user, but it’s a quick and dirty method that may help you out sometime.

  1. Open a terminal window by using pressing both the command and space buttons at the same time.  In the search box, type “terminal” and press enter.
  2. In the new window, type say -i and press enter.  The -i is actually optional – it tells the “say” program to highlight the words as they are spoken.
  3. Type something and hit enter. It will speak whatever you typed.
  4. Repeat step 3 as needed
  5. When done, you can just close the window

There are a ton of options for the say program, such as -v Victoria or -v Alex for different US English voices (these aren’t the only options). There are voices for other major languages besides English, and also voices for other English speaking locations than the US.  For instance, -v Daniel is a British man’s voice.  Unfortunately I don’t know if there is an equivalent for a woman’s voice (there is not on my computer).  There are some voices that might be more fun too, like -v Zarvox (a robotic voice).

You can use these other voices by, at step 2, typing something like:

say -i -v Zarvox

And maybe you now have another option for communication!

Prompt Critical Excursions in Autistics

In nuclear physics, a nuclear reaction is said to be “prompt critical” if the splitting of one atom causes the release of immediate neutrons that cause an additional atom to split. An excursion in a nuclear reactor or experiment occurs when the nuclear reaction rate exceeds the desired rate. Typically, this is a bad thing – Chernobyl, for instance, was a prompt critical excursion. Now, I’m not a nuclear scientist, and have only taken two freshman level physics courses (nuclear fission was not covered), so I’m probably using these terms wrong, so I beg forgiveness from any readers that actually understand nuclear fission!

Autistic people – and likely other people under extreme stress – are subject to a similar type of excursion. I’m not talking about a meltdown that is traumatic to the parent of an autistic, but something more innate and troubling to an autistic person – and something that can often be prevented.

I can explain it best with a story from my past. I’m mowing a lawn as a teenager to earn some money when I accidentally run over the hose. Now that’s not the end of the world, but it’s definitely not a desired outcome of lawn mowing! Maybe my attention was elsewhere, maybe I misjudged where the hose was, maybe I just didn’t realize it was there under the tall grass – but regardless I did something you most certainly don’t intend to do while mowing the lawn. But, I move the rest of the hose out of the way and keep going.

Of course the hose is still on my mind – how am I going to explain that I did that? What will happen when I tell the adult? How can I replace the hose? Suddenly, I realize that I’m plowing through the vegetable garden with the lawn mower, murdering scores of carrot plants. Shit! How could I be so distracted?

Now I have to explain how I ran over the hose and the vegetables! Nobody is going to believe that I ran over the carrots accidentally after I just ran over the hose! I should have been more careful, that’s what you’re supposed to do when you make a mistake. But I made things worse, as now the I have to explain the hose and the vegetables. And you can’t replace the carrots in the middle of the growing season – it’s not fixable. Fuck!

But while I’m thinking of this, I finally realize I’m hearing an awful sound from the mower! How long has it been doing that? I shut it off, hoping I didn’t destroy anything. The engine sure looks hot. I check the oil – only to find it doesn’t seem to have any. Shit! Now what? I go find the oil and add some to the mower, hoping that solves my problem – but I can’t even pull the cord now. Shit, the engine is seized! Fuck! I murdered a hose, carrots, and a lawn mower! Why didn’t I check the oil level?

Unfortunately it’s not my mower, carrots, or hose – I’m mowing my neighbor’s yard with her mower. So I walk up to her porch, so I can knock on the door and face what I have coming. As I ring the doorbell, I step to the side, to be clear of the door. What am I going to say? What are my parents going to say? As I do this, I feel something brush my leg, then, too late, I realize that I just knocked her garden gnome off the porch, five feet to its’ death. It’s smiling, decapitated head seems to be laughing at me. Nothing is going right – I even killed a garden gnome. I don’t know anyone who has killed a garden gnome. I don’t even know what the penalty for garden gnome murder is. Maybe I an claim gnomeslaughter, because I didn’t intend it. But of course the neighbor is going to think I wanted to destroy all her stuff. Shit!

This was a slightly modified story of real events – I did murder a mower, carrots, and hose, as well as a chunk of fence, but the mower was killed in a different way, and, thank God, there was no gnome on the step! But I imagine at this point, I was in tears, even as a late teen, and probably just couldn’t handle any of the world right then – everything I touched turned to shit.

I suspect most autistic people can relate to this – one thing goes wrong, and, like a prompt critical excursion, that causes the next thing to go wrong which causes the next thing to go wrong, until the cycle runs out of things to go wrong.

I will say one thing: The wrong thing to do in this circumstance, if you’re on the other side of the door while I’m standing on the porch, is to say, “Why weren’t you more careful after the first mistake!” The right thing to do is what you do to stop a nuclear reaction: you separate the atoms (or, in this case, the many possible things that could go wrong), preferably with something that absorbs the neutrons. Ideally, you recognize what happened as someone trying to do right, making an honest mistake (the innocent hose), and then that knowledge of a mistake screwing up the coordination and thinking ability of the person, so that, naturally, something else went wrong. Sure, someone else probably would have recovered enough after the hose, but not everyone reacts the same way to things.

I’ll guarantee the autistic is mortified, embarrassed, and very sorry. This wasn’t what they set out to do. And they know they fucked up without you scolding them. The self punishment is plenty to negatively reinforce.

But, to someone who hasn’t experienced this, it looks like someone throwing a tantrum, taking out aggression on everything nearby (or, in the case of a social criticality, everyone nearby). But this isn’t aggression, even when it triggers socially inappropriate responses to other people – its incredible stress as a world the person is trying to live in falls apart around them, with everything they try to do to respond (such as think of the script for telling someone they messed up, like a responsible person would) causes yet more problems.

So, if you see this, look at that first event – could it have been an accident? Was it perhaps not done intentionally? Could the following events possibly be explained by the stress on the autistic after doing the first one?

Even as an adult, I run into this cycle. When things go wrong, they really go wrong for me – and people just can’t understand that perhaps I wasn’t trying to be an asshole, but made an honest mistake that created more honest mistakes. Give me some space away from the problem, let me know you recognize that I’m having a bad day and didn’t mean for things to go to hell. Encourage me, but don’t pressure me to try again later (you don’t want more excursions!), showing confidence I can do it, giving me space and time to make sense of the world again. It’s not defiance, it’s an accident.

I’m Sorry I Hurt Your Feelings

Really, I’m sorry I hurt your feelings.

Perhaps you are a parent, a therapist, a brother or sister, or somehow otherwise someone who has an autistic person in their life.

Perhaps I said something you didn’t like. Maybe I said I don’t want to see autistic people medically abused to solve “behaviors.” Maybe I said that ABA therapy is harmful. Maybe I said your anti-bullying system is cruel because it focuses on changing the bullied rather than the bully. Maybe I said that it’s okay for autistic people to have sex and masturbate. Maybe I said that doctors ignore our complaints. Maybe I had no sympathy for someone who murdered an autistic person, and said I don’t give a shit if they were stressed.

You see, no matter how nicely I try to say these things, how gently I try to explain that some things people do to autistics (even with good intentions) cause harm, it’s not these things that matter. Often, it’s the non-autistic’s feelings.

Even worse, for autistic people, these things aren’t about us wanting to defend our pride and ego, to have people have sympathy for us, or to justify whatever it is we’re currently doing. No, they are about our life.

You see, you might be upset because I dislike some random social skills training program.

Yet I had the shit kicked out of me for not being normal. I’ve literally run for my life. Even as an adult, I get stares, fingers pointed, and laughter directed at – certainly not with – me. So, yes, I’m sorry I said that social skills program was bad. But I’ve had decades of social skills training, decades of society trying to fix how I interact through negative reinforcement and repetition. I’d like to see people like myself able to live without fear of beatings and humiliation just because we forget some social rule.

You see, you might be upset because I say that the medical world sucks for autistic people, or that a drug is bad, because you’re doing that thing with someone you know.

Yet I go to the doctor and have my cries of agony ignored, because I’m probably just “anxious.” I’ve never had pain adequately treated by a doctor, with the exception of some dentistry (and only some). My cries of pain are ignored. Pretty much always. As are my sensory concerns. Ironically, I’m accused of not wanting treatment for autism, but when I ask for treatments that exist for sensory conditions that cause me pain, I’m ignored or told “everyone has that.” No, everyone does not have this pain when they go outside. You’re upset because I said the strong anti-psychotic you gave your kid might be a bad idea. Of course I’m part of the people doctors try to trick into receiving it against our will. So, ya, it’s a little personal for me.

You see, you might be upset because I lack empathy with the parent who drowned/choked/poisoned/stabbed/shot their autistic child — I don’t recognize how hard it is to be a parent.

Yet it’s not non-autistic parents that are being drowned and choked and poisoned, it’s autistic people. It’s people like me. So you aren’t going to get an apology from me when I have more empathy for the child that was a problem to dispose of, rather than having empathy for the adult who should seek a solution to their problems that doesn’t involve murder.

I realize #NotAllParents are awful to their kids. Plenty of therapists do good work. There are some wonderful doctors. I get that – how could I not? But I should not be forced to shut up about how me and my kind are being harmed just because people don’t like hearing certain things they might or might not do are harmful. All too often, we’re asked to remember the feelings of others, and how it might feel to have something they do be criticized – as if we don’t know what that feels like, having everything from the way we smile to the way we show joy to the interests we have to our self care skills criticized our entire life. We know what it feels like to be criticized. We also know what it feels like to be subjected to constant behavioral treatment, forced medication, inferior medical care, sub-standard education, and physical attack. We know what it feels like to be bullied every day of 13 years of school, with no day when you’re just left alone. We know what it feels like when the first thing talked about when another autistic person is murdered is how hard the caregiver’s life must have been.

In the meantime, I better remember to tell all the non-autistic people that they are okay and doing nothing wrong, whether or not they are. I can’t leave this unsaid, lest some person read criticism that wasn’t intended. Their feelings matter. That’s what this conversation is supposed to be about, after all.

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.