Seclusion and Restraint

I went through something so horrible last Monday I cannot write about it in any comprehensible manner without winding up in tears and shaking.

I cannot not write about it either because it is a common issue for the community. One which I somehow thought would never again be even on the table for me. I was wrong.

After having a number of weeks which were even more difficult than before I went for help. Getting help at all has been a difficult chore as my status as too atypical for most approaches has meant more time has likely been spent with people writing reasons why I am failed over and over by systems meant to support.

I had been hanging on my a thread so slim, I will not sugar coat it. I feared I would kill myself and with no way of getting help had to take measures to prevent that. As I did at the start of all of this I had to make swimming out to sea impossible and I did.

I do not believe it should ever be so hard for anyone, of any kind to find themselves in that position. To find myself there again having tried so hard to get well was beyond upsetting.

I had been in contact off and on with the crisis team here. I had left countless messages at the clinic I am seen by to update them on how I am doing since not being able to phone during hours where someone might answer the phone is a problem.

I had my friend phone, when she came by the house last Monday. It had been my experience that messages tend to get passed on to my doctor, pretty well, only if people phone about me which makes it even worse.

Still I so badly wanted to survive that I suggested that.

I have to use the past tense there because what followed destroyed that tenacious part of me that has fought and fought through service inadequacies and outright abuse by service providers.

I had no real faith in the system left but I had retained a notion that my life is sacred. I had seen  that rebutted my entire life. As has  my basic humanity and my sharing “fundamental” human characteristics. I wish that was not part of the autistic experience but it has been for me and we can certainly see in the news that there is not much evidence that has changed as the murders of those who are autistic mount and the spin is nearly always such that it is us who are difficult. So difficult that too many times I have wanted to throw up when murder after murder is justified.

I am technically alive but right at this moment that feels like a technicality as I was brutalized in such a manner when already barely hanging on that I feel quite done with this horrible planet and those who prey on the disabled and ill for kicks and because they can.

So I apologize for inflicting what may be horrific haiku on you but only by sticking to any sort of strict structure could the words come out at all with me semi-intact.

That complaints are being filed and words written that they claim will protect me against this ever happening again is no comfort as signs that the words that have been written in the past are read are few and far between.

I was placed in seclusion in a ward that was already locked with the reason being given that the doctor was afraid I would leave. I had a serious injury which was the reason I needed to stay but I was not given the option of having that tended to in any other manner.  My own doctor was consulted and while having sent me for treatment with the understanding I was willing to have it there is no doubt he would have insisted if I was not willing that I was willing would be something he covered. So they called someone else to get the result they wanted.  It’s actually in my chart how unnecessary involuntary treatment is for me. Placed there the last time someone opted for that and caused great stress which I can never afford.

So much has been documented about every aspect of me in the last few years as my doctor tries to prevent one horrid thing after another from happening.

This was so completely unexpected though. In my worst nightmares I feared that part of emergency because the sheer over-capacity numbers and chaos have made it hard in previous times. It was for that reason no decision had been made earlier as I froze at the thought and shook and was stuck between the horror of not being helped and that and as sudden never works for me we went home to the void of no support and mounting anxiety over our inability to eat and so many frustrations happening at every turn.

As I cannot describe the situation where I felt that tenacious little finger grip on the planet slip. The anguish of knowing I would never be human enough to be safe on this planet.  I am in tears just setting it up so I bring you the semi-untraditional haiku version which mourns not just me and my realization but those who have paid the highest price for being too different for a planet that seems to crave cookie cutter people.

Earth is a planet

Filled with people  who crush hope

Shred lives with laughter

 

There is no remorse

Reconciliation impossible

Lives deemed less worthy

 

Life as a human

Has never worked for us

Always alien

 

That we are not monsters

Children and dogs attest to

Yet our lives stomped out

 

 

That is all I can say now.  I relive the horror, the pleading that given my replaced knees and severe arthritis it was all so dangerous. I will pay the price physically for this for a very long time. Emotionally I may not be able to recover.

To those who debate the damage seclusion and restraint does more academically and justify it I would say try it. Try it in a true way. Go into a system where you seem too different to treat humanely versus just entering a room where you know you are having an experience that will end.

That is after all the real problem. While I felt that tenacious anchor I had on the planet die in quite a noticeable way the primal fear that nothing would ever be safer again is perhaps not something that can be simulated.

They had no reason to do it. They rotated someone else in there once they had me trussed up like a sheep in restraints on a stretcher for asking for toothpaste too often.  I lay there and they joked about me. A nurse asked about my hitting my head while I was in there and replied to my honest answer that I was feeding her a story. Why ask?

“You look uncomfortable” (laughter from the security clowns in the background) and so it went.

The chilling part beyond feeling they had killed me which is an ongoing issue (I know I am alive but something fundamental to wanting to be did finally permanently depart.  I have my doubts it will be back) was when deciding who to put into the room next (which is not how it is meant to function) they ruled out someone who had a long history of violence and was not settling either.  While I admit the patient they put in there next was uncooperative this is the reality of people in residential settings. Minor things have major and damaging consequences.

Nothing about me justifies it.  No one is even trying to at this point but that does not mean any major accountability for what may kill me will occur. Or the additional physical trauma.  Heels have been dragged on having that properly assessed even. Although they added more pain meds today seeing that the increased pain does remind me of the incident and thus I am re-traumatized over and over again.

The person who had come with me and knows me and is a police officer who tried to reason with them every step of the way.  He had stayed because he felt the treatment outcome a previous time where he had re-directed a doctor to the part of my chart about communication had been much better than without him.  He had to justify staying as he is much in demand for situations where people might fight help. So my being willing made it a hard case to make but he could point to a January situation where his presence and indeed going to hospital were unnecessary but without him there I would have wound up in that same ward for less reason.

His having been nice about it made it tolerable as otherwise one could seethe the whole 9 hour wait about the stress of having been dragged from your home and lied to by the person who made the decision. The kind of person who can justify lying as protocol as if all people are the same which was the attitude that pretty much doomed support by that group from the beginning.

He did his best. I do not fault him. I had joked earlier when I could hear him making his case and it was not yet clear he was not winning hearts and minds that he was my “knight in bald armor”.

He tried even as step after step of the nightmare enfolded to minimize it but I am glad he left before he could see the full brutality of it all. He is on a commission to make changes. Changes which right now seem like they will come to late for me.

I felt I should post about it though.  There is nothing pretty or useful about it other than my being able to somewhat articulate a horror that has killed and does permanent emotional damage to people too often. I wish I knew if  my being alive is a technicality or not right now but such is the harm done that finally I feel no urgency about resolving my eating issues, or my other medical ones that go untended in the community.   I finally hit the point where saying I don’t care became true. I do care that barbaric methods used in health care environments stop.

Torture is never justified. No one is pretending this was.  They will all keep their jobs though and who knows how many people have had the same happen since. What I know is several doctors will have to treat the physical consequences now and I cannot believe I will ever care if I walk the earth or not.

That may pass but it seems so unlikely as to walk this planet as autistic is to invite brutality in the extreme. From the banal comments that make  you seem less than human to the total brutal treatment by multiple people with both power and control I am not sure why anyone does.

It had become habit to fight for help and health.   I would not be killed as easily as too many people I knew and loved or simply new as people of the tribe of the atypical brain.

Being murdered is of course more permanent.  The anguish when something in you dies is a pain I hope most people are spared.

 

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This is Autism

The flashblog theme for November 18th is This is Autism.  Part of a number of rebuttals to the vision of autism that the group I call Voldemort Speaks holds. They produced a fairly horrific video on the topic that most people will have seen as there would be no way I would direct people’s attention to it in any case.

 

The problem with the video isn’t even that challenges like those portrayed don’t occur with autism. They absolutely do. The problem is the unrelenting series of images that focus solely on the negative. When a person finished viewing the video they may feel like they are in shock which isn’t really what a group should be going for if they know that many of the parent’s of the newly diagnosed will have heard of them.

 

I can’t tell you what autism is. I know what my version of it is. I’ve met over a hundred people of all ages and across the so called functioning divide. Far more if you open that up to the internet and back when I thought studying the brain would help me work out the condition most people view as normal I did do a lot of courses that equip me to understand autism in the academic sense. Having worked out the academic sense is seldom useful when it comes to normal I would be a hypocrite if I listed those things as what autism is.

 

Autism is lots of things. I don’t have a financial stake in selling anyone on my particular viewpoints about autism.  One hopes that people would question any depiction of any group that was so universally negative as being contradictory to everything people should have picked up about what it means to live.

 

For my own autism I know that the bulk of the behaviours seen in that video do occur. I’m 45 years old and it’s not like the frustration and lack of power, or issues with having access to words when I most need them have faded enough in this particular version of autism for me not to recognize the behaviours.

That’s hardly the sum total of autism though. No life is lived at the extremes seen there. I have struggled with what to write for this flash blog because my own life has had a lot of grim moments in the past 22 months. It has had a lot inf the 43 years that came before those months too. To dwell entirely on those would be to rob me of my own forward momentum on this planet though.

 

My own autism includes both beating myself black and blue with my fists out of utter frustration and strolling across a stage to get my university degree.

 

Speech and all that goes with it is oddly a thing I have mastered far more than most people and which I will never view as a reliable skill set. I can read more languages than I have bothered to count and am reasonably good at 5 languages 7 if you give me the bonus points that go with one of those languages being very similar to two others. Lest someone say well that’s just a language obsession and nothing useful given I fail to speak when I need to often enough that 4 times so far this year people have wondered aloud no less, about my intelligence. Who knows how many people only thought the kind of horrible things they say if they think you are so far from present they don’t need to factor you in at all.

 

This confusion of the ability to speak and the one to think is one which I have devoted enough words to I think.  I don’t really fully understand why people hold that position as it is not an issue I was confused about at any point. Because I wasn’t confused more than a few of the variety of humans that get written off by everyone around them have done and even said remarkable things when I am around.

 

It’s a point of much frustration for me on more than one level because even if everything they say about me in those awkward moments when they make a leap they will soon wish they hadn’t were true it still wouldn’t be okay to treat me or anyone like that. Ever. 

 

So yeah I will concede that being autistic is frustrating but as that frustration is  a product of what autism is and the environment a lot of what is most frustrating about it would go away if the vast resources of time, money and information were devoted to that instead of making more money to further dehumanize autistics.

 

There are only a few things I know for sure about everyone’s autism and those things are part of the very definition of it so why some confusion exists about them I don’t really understand.

 

Autism is pervasive and neurological. There is no separating out autism from an autistic person because not only were they born that way but it impacts the brain. Every experience they have will go running through a brain that is not typical. These not typical experiences run through a not typical brain will shape the person just like experience helps shape experience. 

 

It’s honestly hard to know what impact having to defend my very right to exist more often than any human should have to while do to the person I am becoming. That’s an autistic reality that should make everyone indignant but oddly enough it doesn’t. I am not willing to chalk up my deviation from what appears to be the majority view in North America to some deficit on my part because I have seen other countries take refreshingly different approaches to how they depict autism. Ones a lot closer to my autistic reality on the whole.

 

I don’t fully subscribe to social models of disability as they have some holes you can drive a truck through but that society can make being any type of human harder is pretty obvious. We live in an age where sign language counts as a language credit in university but also an age where people routinely rob autistic people of other output methods as a matter of course. Sometimes they don’t think the person is capable of using them, sometimes they think well they have some speech or even all speech why do they need them? To that I say why not. For me some built in redundancy is good now since typing will always be easier than speaking. Speech is not the holy grail. Providing other methods of communication seems like people should view it as an of course not one to debate the merits of.

 

Autism technically consists of specific differences in key areas. Since no version of the DSM has managed to cough up a definition that didn’t at some point veer out into total pulling it out of their posteriors. A deficit model of a disability is almost as bad as a catastrophe model. So seeing a few things repeatedly referred to as deficit as well as the conflation of play and imagination again I give up for a version of the DSM that is barely 6 months old.

 

That’s autism. I exist in a state of often being quite annoyed by what countless experts laboured for years to hammer out as far as autism goes. But the DSM is a manual that doesn’t enjoy much use outside of North America so it’s not surprising given the grim narrative about autism groups like Voldemort speaks sing that no one gave much thought to wording issues, or the incredibly bad science behind linking atypical play behaviour with a limited imagination.

 

That one bugs me so much I thought of doing my dissertation on it years ago. The reality is it would be a hard sell. I had those stereotypical of autism type play “deficits”. For me my toys were props so I would think at them. They did not need to move for me to be entertained for those hours I spent not playing with them. To me that seems like a surplus of imagination for my development age. I loved to stack and to “ritualistically” move things around. So what?

 

I’ve discussed the imagination issue with my only friend equipped to be sufficiently informed about matters psychological and we do agree that there is an issue with imagination. Neither of us are illogical enough link play and imagination though. I don’t know if the scientists who do went to really bad schools but to do so does take quite a leap.

 

I suppose Voldemort Speaks might take some cheer that they are not the only ones getting autistic people irate or making huge leaps. The truth is even for those of us with autism saying what it is can be a too daunting task. Knowing the harm that a huge generalization in any direction or the other can do I wouldn’t actually want anyone to form their opinion of autism based on me or what I have to say.

 

Ideally an approach to the question could work from the extremes. Somewhere between the horrible, negative only scenario used by Voldemort Speaks and the glowing and all positive version there exists the bulk of autism.

 

Anyone who knows me knows I am not a person who believes thinking positive is always the best way to go.  I see enough comments on blogs, and lists that suggest a lot of the parent population lives in fear of false hope. For some reason false doom and gloom is okay but I do actually understand that mindset. Beyond my autism my health just plain sucks. I totally get how it can be helpful to be mentally prepared for the worst case scenario from the medical bits of my life. That being said you can’t live your life from that position.

 

The whole point of getting a definition of what it is something is and how it is likely to impact you would be to inform action. To enable you to live with those things. You don’t live hunkered down in a statistical minefield of the worst moments of being autistic lived large, anymore than you live with a arthritis that seems determined to steal your mobility. There I personified one of my other a disorders. Being an over-achiever in the field of acquiring disorders I have 5 that start with a currently and 4 pretty well permanently.

 

I know that there is a time for some disorders that are less fundamental to who I am, to view it as a destructive force. At the same time even for arthritis it has it’s benefits. Right now the only ones I can think of is that being obviously physically disabled helps a lot with getting a seat on the bus and that my old age should be awesome as it will be the one time in my life where people won’t think I am grumpy. I figure that being well used to canes and walkers and wheelchairs and various other things that are not so fun in your 20s or 40s I will be the calmest person in the old folks home. 

 

Of course probably I won’t. Old-people’s homes seem much better at catering to the “ravages of time” than autism. Pretty well any institution environment is not likely to leave me calm so it’s a pity I didn’t manage to have kids. On the other hand I have more practice resisting getting shipped off than most so maybe it will not come to that.

 

I don’t do short. I can’t even do witty when it comes to saying what autism is because I do know that is something everyone has to decide themselves While the things that make doctors go aha aha and afix the label to a person mainly mean there is a lot of overlap in those pesky symptoms of autism but each autistic person has their own life and story.

 

Life is not a straight forward or easy journey for anyone I don’t think. Our hope in even trying to participate in a This is Autism is mainly to counter things that make that journey harder. However effective a catastrophe narrative of disability might seem for find-raising, it is no way to live a life. Or view a life.

 

This very moment in my autistic life is mainly occupied with trying to type while my dog tries to lick my ear to a scary depth. You won’t see that in a This is Autism video by Voldemort speaks. We all get one life. When that life has a label, even when that label forms fundamentals about you it still can’t be reduced to the label let alone redacted to just the negatives. The same brain that creates some of the variations of havoc in the catastrophe narrative also creates much more.

 

I am by disposition a realist. People sometimes tell me I am thinking negatively but I seldom am. I also pretty well cannot say something unless I know it on some pretty deep level to be as true as possible which creates issues with a group template like this but which means if I did not think Voldemort Speaks was horrifically wrong about autism I would have to say as much. I have conceded where they are right. I know there is little point in my hoping they will do the same for the autistic community and say they are sorry. Sorry for defining the message when they didn’t have a clue and sorry for the great harm that has come from that. If they were capable of learning from me (which since I have been bugging them since they were founded I think I know they are not) they would stop trying to define autism by their own weirdly warped view. They would take a deep breath and even in the worst moments of life think about the things that are good. They would cease this perverse need to monopolize the view of what autism is and relax and celebrate the things that are good in their life. When that intersects with an autistic individual maybe they will find having put down their special glasses of doom and gloom they can see a person and not an epidemic to stop or a crisis. If they could stop for long enough to view that autistic person that caused them to start caring so passionately they might recognize the intersection of their organizational traits with those of autism. They’ve manged to have a communication disorder so severe they drown out all other narratives and a compulsion to carry on doing so despite the obvious lack of social skills.. In the field of black and white thinking they could use that video as an example. I could go on and on but since they sicken me on a real physiological level I won’t. I don’t want their to be such nice overlap nor do I want to seem flip about some of the real challenges that go with autism. To carry on risks losing the contents of my stomach and offending some people neither of which were my goal.

 

So Voldemort Speaks stop talking. You are talking your way straight into reduced profits by the looks of the people who up until this very week supported you. (Not me of course. I have had a healthy loathing for you all along)  Autism is a lot of things including the things from your video but that’s hardly all it is is it? I’ve always given the humans who founded it enough moral credit to think they must suspect they’ve goofed in their view point but think that deviation from the message would be harmful to the “good” they can do so to the much maligned Ms. Wright, I would say if that’s the view that keeps you preaching harmful and toxic points you can stop. Spend more time with that grandson posed awkwardly in some promotional shots. I believe on some level you meant well but that level has been eclipsed. Stop and learn and if you never utter another word we won’t question your intelligence or seek to rid the world of your human self.  We know what’s that like and although some experts say as a population we are devoid of empathy if often feels like the opposite is true. I can have empathy, actual empathy to the point my physiology recognizes it and doesn’t like it much, when I think what it must be like to be you. I know you have not given much thought to what it is like to be me but you have only captured a tiny subsection of all of that.

 

I don’t like attacking anything even though posts that do get more hits. I really don’t like attacking people or pretending I have a clue what life might be like for them. So since I never have attacked your personhood and admit the above is the product entirely of my mind could you not do so for autism?  I am getting kind of tired of a large fraction of what autism is being typing this kind of post. I would rather go back to other pursuits even if it meant no one ever came here again.

 

This is my autism.

 

 

 

 

 

You Need a Mommy

I have been quiet. Things have gotten more difficult and my capacity to cope with anything had taken a plunge downhill. I did not think it was even possible anymore but one should never wonder how much worse things can get it seems as the answer always seems to be that they can indeed get worse.

 The wisest words about my situation were spoken by a three year old Friday morning, I had agreed to look after him so his mother could attend some kind of course near where I live. Since the plan was for his mother to drop us off at McDonald’s so I would at least eat and he would have access to the play structure or the equally as interesting swivel chairs she popped into the bank on the way before leaving us for a class.

“Do you have a mommy?” he asked. Since he was not distressed I took this for a question and not a pronoun issue. “No,” I said then as that seemed inadequate I amended it to, “ I had a mommy”. He did not veer into issues of why I didn’t have one. I seemed to be confirming something he suspected so he seemed quite satisfied with the answer. “You need a mommy,” he declared with conviction.

That is no doubt the most succinct summary of my situation that there can be. If we define “Mommy” as someone who attends to your basic needs without question, who while she may be exasperated at times by those needs still seeks to fill them without faltering in her devotion that’s also the best treatment plan yet to be devised. The fact is I don’t have that kind of “Mommy”. I never did. It is certainly only that level of someone else looking after the details that would remove enough stress to just get better at this point.. There’s no such figure in sight though.

I do need a Mommy. A three year old being able to see that clearly is about the closest thing in my life to a mommy like level of insight. While his own mother worries about my eating and lack of laundry access enough to do something about it more helpful than telling me to remember to eat, part of the job description of Mommy no doubt includes this sort of cutting to the heart of the matter. He would already be an excellent Mommy if the task were not beyond his fine motor skills, his height, and certain legal issues. Also let’s face it a Mommy who has to be sold on washing their hands and holding your hand when crossing traffic is a bit of an iffy proposition. Still he correctly identified a need and a solution with 4 words. That it’s an unworkable solution doesn’t make it less correct. I have been offered reams of unworkable solutions by much taller and learned people than he is. We all grow out of the clarity of being 3 I suspect. There’s a wisdom afforded to those new to the world where a lack of experience with how the world actually works gives them the least cluttered view I think. I only suspect rather than know that people grow out of that clarity because it seems to take some residual 3ness to accept what is said as wise not baffling. To not dismiss it because it comes from someone who rarely said anything 6 months earlier and still is more prone to ear piercing tantrums than one might hope.

I do, indeed need a Mommy. Perhaps they should spend some of the money they currently spend documenting how my not recovering from my depression is somehow my fault so they can excuse the numerous failures to use the resources that do exist to hire a Mommy for me. I will wash my hands, without prompting in all likelihood but the rest would at least in the immediate future be up to them.

For the past 16 months in the wake of my world essentially falling apart due to a change far larger than my capacity to handle it and subsequent medical and bureaucrat errors compounded with the kind of life that seems stuck on the setting of pour on the bad things I have been treated to far too many people weighing in on what I need. Most have so little clue about autism that they can’t even see how ludicrous their simple solutions are and for some reason I am expected to listen to the same non-solutions get voiced by whoever it is that is dealing with people at the end of their capacity to cope.

One such person just left. I know how they see it. They see me as unwilling to do simple things like remembering to eat. Clearly to her and 100 like here because I have been capable of caring for others this is a choice on my part. I have ensured others are fed, bathed, even continue to breath at the extreme so not being able to meet my own needs has to be choice. I just need to choose to be better and apply sufficient effort. We will have to overlook where I would be if effort were sufficient or any of this was an actual choice. We will have to overlook the judgement that comes as part of these non solutions. Implicit and sometimes quite explicit in these solutions is an accusation of not trying hard enough, not wanting to be well, of exaggerating how bad it is and so on.

It’s hard to hear that you are not trying hard enough when you have tried and tried and any time you were making progress supports were withdrawn abruptly and care plans overturned. Apparently if I only wanted to I could replace all that with reminders from my tablet or a schedule. As if I have not spent my entire life experimenting with variations on that theme and don’t know that I have to already be doing much, much better than I am for that to be even a stop gap solution. Stop gap because even at my best my I don’t get close to desired capabilities in many areas.

I live with contradictions. Wanting to be an effective self-advocate while going to great lengths to try to blend in even when I know full well I cannot even at the best of times. Accepting my autism on an academic level, believing that acceptance and actual inclusion trump faux awareness but being a big barrier to my own inclusion.

 The past two weeks were even worse than normal. Last Friday night had me approach “my” seat at the Jewish Community Centre where we hold services to find someone in it. Some weeks it has come up I am coping well enough to handle this. I do after all know it is irrational but for every place I ever sat more than once I have a seat.

I arrived with our congregation president. She’s quite assertive and willing to make a scene which I desperately did not want. I froze on seeing my seat occupied. I was not able to ask if the person could shift one down. I’ve asked before but it wasn’t possible even before I retreated to the wall to contemplate my several all seemingly impossible choices. My friend first tried to convince me to sit where she was going to. I could only shake my head. I knew what would follow would be a fairly loud eviction from my chair by her of the interloper and feared I would have a meltdown that was a bit more obvious than the sort of implosion I was having then that had me rooted in place and incapable of action or speech but at least not in tears. Fear of a scene got me to the kitchen where as luck would have it the president’s partner was doing some task or other. She called out where I was and instantly had the insight I might be hiding but it was too late. My seat was indeed free Further escape to the bus was not even an option. I had been spared only listening to how she put the eviction.

 That however much I dreaded this action that this was actually the best solution should be stated not just because I know the person reads my blog because any contemplated other action or reaction would have made things worse. Had I fled or wound up in tears I don’t doubt both that I would have worried my friends more than they already are and in all likelihood had a rabbi on my doorstep instead of an email from him during the week I don’t doubt. This way much of the rest of the evening played out in the usual way.

 I returned to the room. I sat down next to the interloper who is actually a perfectly nice man when he is sitting somewhere else… He, I think trying to be helpful and inclusive, said the sort of thing people say when they think the difficult part of change is not understanding that it happens but coping with that it has happened. “Usually we start on page 120 but some weeks it might change.”. He may have even been worried that this week would indeed be one of those weeks rather than seeking to inform me of the obvious. I am not as invested in starting on page 120 as I am as my chair and the blue cup though. It’s almost inevitable that we will in any case.

In the aftermath of my implosion and escape I was still in very concrete mode so all I could do for 30 seconds was wonder why he was explaining the order of service to me 20 months after I started attending, Then I realized he was trying to be helpful but I had already managed to sound a little annoyed I suspect when I had managed to get an, “I know”, out of me,

I didn’t know what to say really, It was thankfully a day where the theme was sombre enough that eviction from the chair he chose first wouldn’t I hoped stay in him mind long. I wouldn’t have been able to articulate why I could know that someone might be in my seat and simultaneously be bothered by it or why on some days I have the capacity to sit elsewhere and cope with the dissonance that arises and sometimes even surplus so I can still get something beyond coping from the evening. Our rabbi who’s rabbinic sense either tingled about me or who more likely was told I was not doing well emailed something about how when the wine glass is already full one drop is enough which again is something I know but did make me feel a bit less guilty.

I so wish that this fact that things can and do change that had eluded me. That it was new and transformative knowledge that having been given it I could work with it If only it were knowing and not the varying capacity to cope that is in the wind. I would have transitioned seamlessly to a new home and not gone through any of the past 16 months. This not so missing piece of information presented in what was probably a sincere attempt to help left me mystified. This was something I know. Oh how I wish it was new and exciting and transformative information that I had just been missing. I love information. Sadly the most interesting part of this piece of information was it being offered up.

A similar approach could be taken with the wine analogy. I know exactly that something very small can be the one more drop that makes my issues less invisible and more visible. I struggle with the competing desires of really accepting my own autism enough not to hesitate in areas where getting my needs met means making a scene and being quite private and wishing I didn’t have needs that were not met without some level of hassle and intrusiveness. The difference being that however tritely, it sums up my reality of a life spent too close to the edge of capacity, it did ease some of the worry about my needs being a hassle, or worse beyond comprehension, I suppose something cannot be in danger of seeming trite without also being very true. Even when it is truth you know too well it can help to hear others frame it. I usually think my self-esteem is actually quite good but truthfully that tends to be in areas not impacted by my autism.

It makes no rational sense at all to be more apologetic about a melt-down over a chair than the bus kneeling when it picks me up but that’s part of the ongoing contradiction I live with. As is trying to encourage actual acceptance and inclusion while having as the biggest barrier to inclusion my own desire not to be difficult. I don’t have the kind of in your face kind of bravado some seem to have where their diversity dang well better be accommodated or there will be heck to pay, I can have it for official, tax payer funded entities for some reason. I expect official support to accommodate me. It doesn’t but that doesn’t lessen my expectation for some reason, It again makes no sense as of everyone in my life the group most likely to put themselves “out” on my behalf are this very group. They have shown it over and over but one can loathe Voldemort speaks for presenting autistic people as a burden and simultaneously seek not to inconvenience anyone. If I was someone else I would probably blog about how annoying I am for that contradiction. Wait I guess that is what I am doing.

 As my young sage worked out if I had a Mommy she would do all that heavy lifting for me. I have seen mothers ferociously advocate for their young over much more trivial things, I have similarly advocated for other young charges without a drop of regret for being a bother. Did some one really ask me loudly, “What’s wrong with that child?” when boarding the bus carrying one of my charges. Strap yourself in ladies and gentlemen because the bus ride is about to get a bit bumpy. Did a similarly enlightened citizen really express when passing a friend and myself and the same young charge on the beach how much better it was in the old days when people enjoying their day didn’t have it ruined by looking at children like her? It’s about to get educational. Did her companion while eying my friend who was native really nod at her and mutter something …? You get the picture. It didn’t wind up educational My friend was used enough to racism to find it amusing on some level and pity them for the fools they were and so was expending some effort to keep me on the blanket eatin g my fries and not running down the beach providing commentary about who the real blight on the day was. The offending child had not been seated a bit further up from us and was entirely too absorbed in digging in the sand to need to do any of the explaining of the too frequent kind. So we moved on.

 My entire life I can be a lion for other people. I can be that lion even in areas where it matters far less than for racism and able-ism. Heck mess with “my” gamers and anyone who has worked with my knows that my rants will be somewhat endless.

 I think as much of my silence post the explosion of followers after my post about awareness came from this contradiction. I was overwhelmed by the sudden unquiet nature of this corner of the internet, my life did take several turns that meant adding the expectation I write on top of everything else I couldn’t deal with was too much but I also felt like a fraud of sorts.

 I’ve said my acceptance is always an ongoing thing like pretty much every other thing about my autism it defies quantifying. Compared to when I was 20 and Data was my role model and my goal the same as his – to outgrow my programming I am a model of acceptance. Having realized at some point that Seven of Nine was the healthier role model that was huge growth. For those of you somehow unfamiliar with Star Trek two helpful bits of information. First if you actually know me in real life or at somewhat close to me in the ways people wind up close to each other on the internet it is probably best if you not admit this. You won’t exactly be dead to me but you will enter a category of people I have some doubts about. Second in the interest of understanding what I am saying Data was an android who was perpetually seeking to be human. A high tech Pinocchio who for a time seemed to embody my reality in a way that stirred me.

 Seven of Nine was a human who had been assimilated by the Borg. Then rescued by the crew of a later series than Data was on. I won’t trouble those of you without a background in the mythology of Star Trek with why a Borg is a better role model but it boils down to her being quite different from the crew she found herseflf living among despite a certain similarity. She had been human but some elements of being Borg could not change without killing her. Having been Borg since childhood was it seems as pervasive as autism is.

 The Borg value knowledge and seek perfection. While their method of getting both is a bit horrifying one can hardly argue with the goal. Seven herself is a logical, very rational, intelligent woman. She sees the humans around her and seeks to be more like them in the ways that she values but retains her sense of some of the things she values highly no doubt as a result of a life as Borg as being desirable and worth holding onto all the same. She grows emotionally but while she has doubts about various aspects of humanness those doubts are expressed in far healthier and realistic ways than saying grabbing an improved emotion circuit. She is able to function as different in a noticeable and to some degree even feared way (her perfection as a role model having grown I suppose as fear of autism has grown) and still be valued by others and herself. She does not approach a situation with the mindset of one who’s difference automatically, even to themselves makes them less.

 Some may be angry at being conditioned to approach very key parts of identity this way but conditioned we are and it makes some sense. It is adaptive to some degree to know the ways in which you differ and take them into account the problem really is the internalization of the message the undesirable difference is always on the side of the labeled.

 The Doctor was more prone to morbid reflection on his different status than Seven but while she had more life threatening malfunctions of her all important cortical node than he had variations on crashes she is more at peace with her reality. She grows towards that which she values of what she sees and is clear on what she does not view as worth pursuing. She bends over time on a few of those things but overall her sense of self worth is not negatively impacted by being who she is. Unlike myself, who finds myself apologizing for a far more reasonable accommodation for my autism than what her crew goes through to get her spare parts she doesn’t tend to apologize for that much greater hassle. She occasionally expressed some wonder that they would but her basic right to exist and by existing have her needs met without too much quibbling about how inconvenient those needs are is an underlying assumption.

 I am not really sure if I will get to that point in my lifetime to be honest. It’s a bit reflexive even in the most accepting crowd to feel embarrassed by the joke I don’t get or the entirely irrational yet absolute need for the comfort of sameness. On the same Friday that my pint sized friend correctly identified my need for a mommy the opinion of the congregation about which tune to use for a prayer was expressed in terms of same of something new. My immediate and strong assertion of same drew some looks but that included one from the person leading who seemed to realize I was so vocal that it should be the same it probably should be. At times when people have really pushed the matter, I have articulated that given the fact that change is a bit inevitable my preference is for them to pick a few things and for Pete’s sake not change pretty much every element of the service, They are a bit self-regulating because the prayers inevitably sound better with the usual form and tune so without my having to push the matter at all a too heavy dose of change tends to be followed by months of barely deviating at all from the usual until people have forgotten the horrors of when they tried this tune or chose this prayer over another. I suppose there is some automatic comfort in knowing you are with a group of people who when faced with the question of why we do some fairly strange things are about as likely to answer with a shrug and “tradition” as a lengthy discussion what various scholars say on he matter. Being a fan of both it’s hard to go entirely wrong.

 That at my worst I feel I have to apologize for being me in the setting most likely to accommodate for me is sad for me. I suppose if like the various bearers of support the government dispatches they were actually unwilling to accept me it wouldn’t bother me at all to have had the please don’t make a visible scene kind of reaction to what was a very simple conflict between a need at an extreme because of how badly everything else was falling apart and someone else simply being there first.

 In a setting where I am included enough to be obviously to others part of the “in” crowd despite being a noticeable outlier makes this failure very clearly mine. Another contradiction. Absent the rage I can have for the irrationality of entire systems that cannot take into account the existence of a person like myself. Being angry at entities as faceless as governments and health authorities or Voldemort speaks is easy. Seeing the ways in which I am an obstacle to myself considerably harder. Fixing that issue having identified it, as I say a work in progress often undone or mostly undone it seems by whatever else life is serving up.

 It’s much harder to say I create additional issues for myself by not accepting my autism on the level that some people in my life are prepared to. I know some of that is a product of how badly I am coping overall. Some however I think is always with me as an echo of years striving to be what I could not. I have for the most part ceased seeking the impossible and even identified the way in which being “normal” might be worse but it I a bit of an infinite acceptance loop. Having overcome trying to overcome my autism I am left trying to overcome apologizing for that which cannot be changed. In better times that would be such a faint echo as to not register much on me mentally but at a time when a child can identify that I need a Mommy that urge to not be a bother, to not have people need to alter anything for me is manifestation of non-acceptance. While countless articles will blame this reflexive devaluing of myself on the society that creates and nourishes it there is only some truth to that. It is true messages about your non-normative reality get internalized. How could they not when the entire format of you life has you as a case in need of management rather than a person? When at an extreme by being able to articulate some of your struggle you are seen as a danger to those who are “really” autistic simply by doing so. People might believe your life isn’t 100 percent tragic if you describe it. People might see that even at the grimmest of times your life is a life and has value and meaning not just to yourself (which should after all be enough) but to others. Still a life lived having to state those very things is taxing. Your default position shouldn’t be having to justify you life as possessing value despite the dificulties. It’s tiring.

 If I could lay all my own lack of acceptance solidly at anyone’s feet I would be off the emotional hook but it would not be honest. I don’t know if I will live long enough to be in a state where I don’t feel apologetic for my less cleat cut needs. Lacking a Mommy it is my responsibility to articulate what they are. One would hope that when presented with a situation where I can’t do that and someone else is both willing and able to champion my needs I could just accept that without embarrassment and without apology. I can’t though. Not right now at this time in my life when so little is certain about the shape of each day or my ability to endure it.

 It is always the small things that we fail to account for that wind up becoming big at a time like this. The bursting into tears on the bus when one cannot conceive of either going on or ceasing to go on. Well okay that seems like kind of a big thing but the crying on the bus itself is small in the grand scheme of things. The trivial change not coped with being harder to predict than the huge one that most would by now say I would do well to avoid. I need a Mommy and while some might say I have a small army of such things standing by of both genders standing by to secure things like my chair, demanding that I eat, and so on that is somehow not quite as comforting as the child’s version of a Mommy entity that can deal with everything for you and about you withought their devotion to your needs faltering. The presence of so many people in my life tackling those practicalities from time to time should make me more certain it is okay to be as I am.

The kind of conviction I have when I place it in a spiritual perspective that it has to be that I am as I intended and by extension then my life has value equal to other creatures is sometimes starkly lacking in my day to day life lately. I suppose the real advantage of the love of a Mommy like entity over that of G-d is like the kneeling bus it’s concreteness. When you are young enough to be constantly with your Mommy or people Mommy enough like to be an acceptable short term stand in for her you always have that care and concern, and love and acceptance of the miracle you are being reflected back. When I am feeling only slightly better than I am now I can quite easily access the less tangible form of love and acceptance and renew myself on that but right now even that is a task beyond me. So I do in fact need a Mommy.

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