Invisible Lives

Pardon the poetry but some months are so awful nothing else will work. It has been decades since one would mistake me for a poet but the most raw subjects will not be formed into sentences with ease.

 

Invisible people leading terrified lives
Unheard as well as the words we summon are taken as other
When words will not come dismissed as having issues
When they come slowly they are again issues.
It is a terrifying thing to walk among those judged as people
To depend upon them and know that you are in fact a hostage
They can and have hurt you.
They will again

A word sends you flying blinded by all but the desire to get away
Words you were taught do not hurt. They do.
You do not have to fall down a case of stairs because of this blind panic
The panic that comes from being seen as less worthy of anything useful
The fleeing to most confirms that.
If you could speak easily you would spit out the relevant research
No one actually cares that if a word you have heard often sends you so fast
You are in fact already hurting more of the time than not
Dismissed again with less than a proper exam as you are not worthy
Not of the care those unlike you get
Not of concern that your constantly over—aroused state needs looking into it

It is, after all for those who understand brains a sign that calm has too long eluded you
Brains are your area but they who can sneer the words of dehumanizing would not think this
You will be dropped off
Without proper care, lie in pain and terrified
Wonder what it would be to be an actual person
Perhaps just as bad you think as that seems a process of trading truth for something else

Those that do it control your care though
You want someone to know but have never been able to call strangers
Your request is refused, you point out the dubious legality of this
They decamp to the truck to follow the edict that nothing you want done will be.
A hostage of disability or the smug feeling that you are others too control and spin.
Wrong has been done but if they can get the their version out first …

No one comes of course.
This feels like re-run
To make it worse levels of how little you count have kicked in
Fired by your pharmacy you try to create enough of a balance of things so that this is not fatal
Invisible lives so unworthy that the potential for death a fairly clear ethical line
Need not apply to you

Devalued lives, unvoiced fears, where is my voice?
Tears are shed into the dog.
Accustomed to licking them from the face he performs the service again.
Choke out a few words for him on how sorry I am that he is stuck with me
He could have a happy human.
One viewed as a full person with the rights of others
Then again they might consider him their owner and likely have others to help when tears flow
The sensation of panic will not go away on its own and looking at the medication left
The worried math of evoked potentials
The work that should have been done by he who felt he could indeed deny something vital over profits.
I have for years sent back the form he demands I fill out.
So sudden action seems cruel as I am used to kindness in a pharmacist
In the former owner as well
Red faces and stabbing the air he has spit out he is both
The new owner and a pharmacist this enraged bully confronting me at the door
Of what passes for my home.
The stress and fear apparently not his concern other than in theory they are
That I may not be able to cope with any of the ways too work around this firing
should probably concern him but why would they?
Many professionals have ethics but they apply not to the likes of one such as me
The death sentences fly in

Society trends in a direction so horrific that this is one of many similar incidents
The worried math of how to prevent death is my concern
Another gash in any facade that I am a person
The progress through which you become a non-person is ongoing
You sometimes forget.
Sometimes in the brief joy of being among people who see you as you
You are lulled into thinking this is a view that might catch on
In the days that follow you will reflect on how often you have made this mistake
Chiding yourself for blaming yourself for the natural desire to lean into a better identity
To believe others may not be blind whatever caused the quick dismissal
You are wrong though.

Asking for a phone call to be made you are refused
Autism is something you feel like blaming for this form of hostage keeping
That would hardly be fair though
As society has in theory provided support based on what you cannot do
Then never really monitored if they comply
So now they too are terrifying as one cannot be supported by those who will cage you
Who are alarmed that the agency who has every right to know and thus they will not.

Invisible, unheard, damaged and scared
Not by the neurology that allows so many to discard you
By the many who have to view you as less than to get on with …
I have no real clue what drives this desire that some must be so much less than
It is common but it’s utility is lost on me

Invisible, unheard, hurt and terrified.
Sobs hit keening levels but no one will ever hear or come
This is not a reality with a place for the likes of you
You are paying the full cost of having forgotten ever that this was the case
Rocking as the dog likes the salt from your face you croak out Bill-C-24
The dog no more like other dogs than you like people wages his tail
If you had croaked out good-boy he would have barely noticed

Days go on
The dog not afraid of course as you are a reality he is used to
The fear escalates and escalates
The math of thresholds and evoked potentials has you hoping most of the risk has passed
So too has anything that might help with the terror

On the day I was born a party was held
I wonder why as the 49 years that followed do not support it as joyous event.

 

Digital StillCameraPurk

 

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Why I Keep Trying in a World that Would Prefer I Don’t Exist.

A commenter for my flash-blog called it a rant. Hard to read and so on. I am the first to admit that my writing is nearly entirely generated by just starting and carrying on and in that specific case I gave up when WP restored unedited versions over and over again.

I would call this explanation of why I keep at it an uncomfortable truth but it’s not about climate change so someone might object.

The commentator later said it was her own issue for losing attention but I know there are others out there who I wish could hear my ideas but who can’t wade through them. Both in real life where I either talk not enough or at a frantic pace, and here. It was also too late to keep my deepest inner demon from fully surfacing and concluding only saying that demon is a huge part of what drives me would be honest.

I cry when I admit the full truth of what I see as the danger is in the whole making a label into a global crisis thing. When I was young autism was seen as much rarer but also in terms that set us apart from pretty well every human out there. Our fundamental deficit was seen as an inability to love.

That’s pretty bad science really, getting to a notion of an emotional state or lack of it based on observed behaviour but that the bulk of people identified as behaving autistically back then grew rigid at human touch, screamed and so on if the issue were pressed. It was not seen then as perhaps some sensory issue that made all those things so unpleasant but an inability to love period. Now they dress it up as a deficit in empathy which is just as absurd but maybe a less painful notion for a mother to take in.

I’ve written that my mother improved at unconditionally loving me in the years leading up to her death. What I left out was while that improvement was happening her mind was being changed not by anything I said or did, but by cancer eating away at her brain. I have lived with having to wonder how much of what finally did amount to my experiencing unconditional love from her, was a result of cancer eating up previously held notions and inhibitions that had until recently led to behaviours in my mother that made it obvious while she did love me that love was tinged by shame.

It doesn’t actually diminish how wonderful being with my mother was when her mind was more literally changed was, to understand the brain well enough to know cancer munching away was helping all of what should have been there from the start. It’s less painful to tell myself I came to terms with things and certainly since she is now gone from the planet less painful to not admit this core motivating factor fully.

I’ve seen how ineffective words are in changing people’s opinions about autism. I cannot really live with notions that other parents wind up thinking thoughts that are downright wrong about autism and then more people get to grow up knowing pretty well any second they dare to observe too closely, how much their parents are ashamed of them. I can’t live ethically with not pointing out when a huge leap of logic is being made that could be destructive. I can’t because for me the things people knew about autism caused a complete parental surrender and some pretty horrific things which I will not write about here.

So yes I do tend to ramble. It beats truly facing that very fundamental pain that comes from knowing not that I could not love my mother because of my autism but that she could not, the way love is most fully defined love me. That it ironically took the presence of pathology in her own brain for her to finally look at me with the kind of love a few other people do possess for me.

If I am lacking in empathy for having spent the better part of my life fighting for a better handle on what people meant when they say love then I guess I would prefer to lack empathy than to be so sure I knew what either love or empathy looked like across the full spectrum of people that I said such and such a group is deficient in either.

I don’t think I am actually deficient in my capacity in either case and certainly what I have seen the so called “normal” population do while claiming to be good at empathy would make me wonder about how they define it.

Imagine knowing the people you care most about are often embarrassed by you. Listening as they start explaining you, just in case, before you even get a chance to screw up socially. That’s the less painful present the past was so much more horrible.

In the end I think my mother did experience more unconditional love from me than most. I didn’t hold the pain of knowing what it took to get there against her but more the world that shaped her and that’s why I am passionate about the narrative about autism. I am 45 years old. My life is more than half over. I don’t need to spend time writing things that get summed up in a way similar to my being summed up was. I do it because if society as a whole adopts toxic visions that link autism to horrors that are not scientifically supported, there would be little point in walking the planet. I do it though most of all in the hope that no little human ever is written off by their parent before they even got a chance to show them in a way that made sense to them that they did indeed love them.

It’s not news to me the world views me as strange and bizarre. There are worse fates than not fitting into a world that has some pretty weird values though. The largest good I am capable of is making people wonder if they are right about what autism is so I try. If people can’t find my message in a sea of words I am sorry but I have to try.

The world is a horrible place to go about in any sort of an obvious different way as it is but I don’t really care about changing the world as a whole. I just have to hope some parent of a young child does wade through my clumsy words and question. In real life I have been there to make people question notions they otherwise may have believed in destructive ways, but in theory you can change more minds on the internet. It seems largely a theory right now as I don’t think I have seen one change in a measurable way through my writing on my blog.

I say young child not because I am confused about the longitudinal nature of autism but because parental fear and misconception needs to be altered before it can do incredible amounts of damage to both groups. I cannot see as a type as the tears that started when I began this document have been a tad unrelenting. You can come to terms with damage like knowing for most of her life your mother doubted your ability to love but you can’t run a nice scan on your brain the way you can your computer and fix the impact of that.

When groups set out to make me less human for profit, at this point in my lifespan on some level I wish they were correct. It would hurt so much less if I was as completely lacking in common emotional ground. I may show it in different ways but I am very much human. My life is not less valuable and it darn well isn’t something for people to profit off of demeaning.

The uncomfortable truth is I was barely an adult before I had to think that this world could only be made better for the next generation of autistic people. Those of us emerging into adulthood in an era when only the classical looking were being labeled at all were already shell shocked by a lifetime of narrow misses with presumed incompetence making some horrific things possible.

When I see the gains that were made for awhile being erased so that pretty new children are subjected to therapies and views that we keep hoping were relegated to the past, and this erasure isn’t even being fed by science but by unethical fund raising yeah I will rant. I don’t like it when words hard come by are dismissed as one since I know when I have been. I am only sorry my message may get missed in a real rant.

This in case anyone is wondering isn’t rant but my own uncomfortable truth about what it has meant to be autistic. The most uncomfortable truth in my past. The most uncomfortable truth in my present is that people still think these things. I’m not that great at throwing myself into the gap created by different neurology clearly but I do have to try.

I won’t stop as long as there are people anywhere using disability of any kind to justify those people not being allowed to live, or having lived being described in ways more suitable to plagues and natural disasters. I am stubborn that way. My tenacity in the face of what others would take as defeat may be the best gift of my autism.

Enough with Making Distinctions.

In the past weeks blogs everywhere have been exploding with critiques about the group I refer to as Voldemort Speaks. While it’s enjoyable to see more metaphorical allies take the field embedded in a disturbing number is the notion that one of the reasons what is being said about autism is wrong is that it is a spectrum disorder. Which it is but that doesn’t make it an ethical point.In the worst case scenarios some go on to say some people with autism lead productive lives.

I say worst case scenario because the group I don’t name is an offense to humanity. If I never wrote a single thing, or read, and if my diaper had to be changed and so on any portrayal of my life as a catastrophe, an affront, something to stop would be wrong. If I, improbably now wind up with a PhD someone pointing to me as a beacon of hope would actually be quite wrong. It isn’t usually thought of that way but it would be.

It may be an advantage of black and white thinking to see that. Every time someone refutes not only Voldemort Speaks position this way but other like minded groups, they are shoring up some disturbing notion that there is a line a human can draw at which point another human life no longer has value. I never did master the complex social skills that lead to procreation. I have though hunkered down wrapped around lives that most would view as pure misery, Wrapped around quite literally in one case as the level of uncontolled seizures that his body endured could break bones. He was at the limit of anti-convulsants that wouldn’t also kill him so there some person had to lie. He had to be held always for the same reason. He could not see, hear, speak or move in any non seizure related way. I hate to think what Voldemort speaks would say about him but thankfully he didn’t fall in their area of non-expertise.

His family, while capable of the humour that goes along with the notion that their son’s only activity was seizure activity, always treated him with such dignity and respect. They belonged to a culture where as the eldest son he had a status over his siblings and  they were affluent enough to purchase the trappings of a little prince for him. He was treated that way. His father would dress him in silk pyjamas and read to him as if he could hear (many years later when fMri’s came along it would be concluded he did indeed hear something against the expert opinion until that day) I had become as someone young, and strong, with experience with medically challenging children the last hope often of any rest from truly around the clock care. I saw lots of people in situations who if anyone could lay claim to the catastrophe vision of their kids lives those people could. Yet they didn’t. While that boy occupied and extreme so too did his family. The presumed competence well before anyone was urging people to. They did it naturally it seemed. They were worn out and tired and hoped for the sake of their other children to be able to close the door on their son’s room knowing someone quite literally had his back.

I don’t know what private demon’s they had fought to reach that state in the face of everyone telling them otherwise. His father asked me once if I had seen “My Left Foot”. I said I had. He went on to say it could be possible that trapped even more deeply inside his son there could be a genius. His father was a brilliant man. He and his wife could no doubt produce one and nurture one but the neurological reality for his child was even if that had been the case new destruction was being done constantly. The human brain is resilient but actual genius is a territory rather rigidly defined and while I had absolutely no argument with treating every human as if they may be one on principal as being preferable to defaulting in the opposite area the notion he could be and would never have the physical capacity to use even the most futuristic technology to express it was a horrifying one for me. Not clearly for his father so while I found it a scary notion I didn’t question why  he wanted to think that. It worked. It was his son and his view of his son and not mine to question even in the awkward position of someone point blank asking me if I agreed and being truthful to my bone I couldn’t really have an argument about it then beyond the nagging voice that wondered and if that wasn’t possible what then? As the movie was recent back then I suspect they would have been as steadfast but logical people tend to need a reason so my suspicion is they would have found another but I cannot know as I was not them. I would not presume to know what it was like to be them. I could only know what it was to care for their son. It was inspiring but not because he was rising above anything in inspiration terms. He is not much altered now from how I first met him beyond being older and now with hearing aids.

They were the most unquestionably, loving parents I had ever encountered. It no doubt helped them when staring down any expert that they were both well educated. I was troubled by the hint that some of what drove his father may have been the notion his boy could be a genius but it seemed unlikely that was anything other than a new motivation as he had asked if I had seen it not read it and they were clearly practiced in the art of presuming competence. They were the only family to ask I attempt to teach a second language to their child. I was used to having to defend wanting to teach the alphabet which didn’t seem like an option here as his hand could not be dragged though anything without caution.

They explained they had noticed their son was his most relaxed during his bath so during that time if I could work on 20 key words from their native language that was likely the best time. I was dumbfounded really. He had at the time no receptive facility at all let alone an expressive one. Years later with a lot of amplification some sound was getting in. I didn’t even work with him by then as he was too much of a challenge for my arthritic body early on even though I very much wanted to. My longest term client remarked to me having somehow remembered that I had worked with him as that had been at a time, when no one thought she herself was taking much in, that he could hear now. I asked her for details which she couldn’t really provide. She said well he has hearing aids now and sometimes he smiles when you talk to him. They like all the chocking risk students ate together so she knew this and was willing enough to talk to him although until that year it had seemed an exercise in futility. His bath had been the only thing to previously get a smile out of him so this was news indeed.

The catastrophe model of disability would have both the client who provided me with an update and the boy she described essentially as only burdens. That one did learn to talk, read, and write and use the computer in no way says to me that her life has more value than his. That I can talk most of the time if I talk at all does not make me better, that I can express my thoughts does not devalue the lives of those who cannot.

Both these children met ethical criteria for being euthanized at birth. They never called it that though. They always said that they would be kept warm and clean until nature took it’s course. That they would be hungry and thirsty never seemed to bother people. The client who was by far my highest achiever had a father who wanted this for her. As far as I know his position on it never changed. He had declared when her mother said no that should she survive he would never spend a dime on her care. Oddly enough this very position made him quite motivated to make respite care easier to access and funded. He was loving in many ways, devoted, but stubborn on the whole should she ever have lived concept.

I couldn’t grasp this either. Not because at the time his view point was first articulated she seemed necessarily likely to “amount to much”. I suppose to some degree my failure to grasp it may have come from having been another devalued life but not entirely. She was my first respite client and the author of my future years with children quite a bit more severely challenged than she was. She was also my last, despite a desire by the agency that employed me to cough up kids and adults more suited to my physical needs recently.

I never encountered any who were not human. That seems obvious but clearly not or why would anyone seek to lay out criteria by which they could simply be left to die of thirst or the consequences of treatable medical issues? Right now somewhere on the planet people who meet the dubious criteria of being high risk for having a child with autism are being urged to abort sons. They ignore the science that would suggest that very high risk group has as much as a one in two chance of having an autistic daughter. That anyone would think it was anything but an exercise in pseudoscience to tout this as screening for autism when it is nothing other than selecting based on gender will no doubt fall apart in the court of law in a few years when someone files a wrongful life suit. I use risk only because that is how it is described. Not that I agree with the terminology.

Wrongful life. I am told I could get some compensation from the producers of a pharmaceutical my mother took to ensure I was not miscarried. I could get more than most I am even told but to do so I would have to say I fall into a category of people who never should have been created. That the deficits linked to this medicine one of which is fairly central to who I am mean I should not have lived at all.

Since I snuck into the world seeming like a miracle as no one thought I had survived what looked like a full miscarriage made my parents so happy for not very long. I was escorted home gift wrapped in pink. My father had told the neighbours if a pink flag went up to come for a party but if a blue flag did I was a son. My brothers are typical or at least fairly typical. The lack of celebration for a son was not due to any fear about what that might mean but simply they had tried for a daughter. My mother wanted a daughter an unhealthy amount no doubt. She had visions for me like I suppose all mother’s do that I would never meet. She was worse than most about hiding that but did improve with time. A long time. A life time but effort is valuable.

My mother was more prone to believe what people thought about people like me which at the dawning of the 70s was not much better and in no way more accurate than the current catastrophic narrative. Having read I was incapable of loving her I may not have seemed worth much investment. It did to be sure make my own journey with what love means considerably longer.  While evidence of my developmental delay can indeed be found in my pediatric chart so unpalatble was everything that went with having autism that I learned after her death my mother who had never uttered the word had told some people in recent years I had Asperger’s. For her that was progress and no doubt she viewed that as less grim despite every bit of science saying in people like myself there is no identifiable difference within diagnosed populations. Even if there was so what?  They have changed what they call me 5 times now in my life if we count the flirtation with notions of residue.  How would you like to be summed up as that? It seems a word usually used in unflattering ways but to be residually autistic was supposed to be great. That there was no actual thing didn’t seem to bother people or dawn on them. It was a brief experiment. That annoying people like me back skid into the more obvious variety pretty constantly even if they could read and had periods where they seemed almost undetectble from peers must have been annoying.

Back sliding is really the terminology they used as if being normal is some fixed point. As if enjoying yourself in a meaningful way were a return to something less desirable. Yeah so what. I stare at my dolls and stack my coins. If you want to extract a lack of imagination or play skills from that question your own competence. I said this in much more academic terms in a review on the literature on wheel spinning (I would have looked at play more widely but such a staggering amount of time has been spent trying to work out how to teach kids to push a car rather than spin their wheels it would not have been possible to get an A plus if I ignored the vast quantities of research there. )

I would never have taken it up with my mother how there was no better, and that to grow up knowing you had somehow failed by simply being given a label was an actual burden not the hyperbolic variety. A child even one who people doubt their ability not only to recognize emotion but to have them, is not oblivious to the pain they seem to cause their mother. That’s the problem really as much of the pain is purely imaginary. I could in fact love her. I do love her. She has died but despite being labelled in scathing ways by many she was the only mother I can have. I have had other, healthier maternal figures who did model unconditional love for me but she bore me and lived with the pain of a constant anxiety about my well-being. That much of the initial confusion about what I could and couldn’t learn was founded on ever changing notions doesn’t undo the harm those notions taking root causes.

Like any mother she did her best. Like any mother she was subject to notions of what goes with what people think about her kid. It’s definitional for mothers. Not that they go blindly along with it but that they do care. That my brother could handle a full table service before the age of 3 was also something that mattered to her. He had to as his was a more elegant time and place.

Having autism has more often than not been too hard for me. The most successful thing I did this week was a mad dash into a store to buy the three items I could get without risking coming so undone someone thought something needed to be done about me. A real risk as I was not capable of meeting any social convention beyond sticking my debit card in the machine and hammering out my pin before fleeing. I am not so oblivious as to not notice in my peripheral vision that makes people uncomfortable. I no longer care as their social discomfort at having to see me is nothing akin to needing to go there. My doctor had urged when trying to be useful to me that if crossing the street and entering the store was too much I could go to Subway (a sandwich place) and get enough for three meals at a reasonable price and safer. He too is not oblivious to having to dispatch me almost without useful support, week after week. His concern when laying out the whole so you will cross the street, enter the store, get a, b, and c, pay, leave and go home plan was evident and he faltered and offered up the alternative. I said in the kind of comment often taken for humour that for the kind of heroic effort entering anywhere was going to be I was not coming away with three meals worth of food.

This was hard. This is the sort of difficulty though that could be remedied with resources that do not seek to change me beyond making things less stressful and healthier for me. A single hour a day of someone who was actually allowed to help me shop or go shopping for me would be life altering. The only way to get that right now is to enter a program that would entail a change of doctor. He mistakenly thinks I have an abandonment issue rather than a change one. Pretty sure I do know the difference and  I do honestly think he is right to think he is more useful in his usual area of expertise. He just has the misfortune of being the only hired help person to not have changed in the past 20 month so to me changing him out at a time I can’t even be counted on to do something so routine as crossing a street and entering a store seems like asking for new complications.

I’m an adult. Most people with autism are. When I read notions of not being able to house autistic children becoming adults from my slummy place it’s hard to understand where people are coming from. I am not cute. I am downright rude at times if a person opposes me in a fundamental way. I have needed to be. I am not all that sorry as it has been a useful skill.

Like every adult I was a child but unlike every adult sometimes people still do treat me like one. Sometimes it is needed. I was not bothered by my doctor taking more pains with my plan for the immediate future as someone could come along and question his competence if I had managed to die in pursuit of bread and milk and bananas. I was happy to see some sign he recognized this would be hard as sometimes I feel like I say things are hard and he says I know but nothing changes. This at least laid out some of the trickier bits. Acknowledged that the bigger store might be well beyond me. It was since two days later I consider myself to be recovering from that. It had to be done though.

No doubt someone is wondering how the heck can I say all I do here and not be able to do something “easy”. What’s easy is always in flux. Usually hanging out with my dog and computer are the easiest things of all. I actually had a home supporter worker (I get 100 minutes in theory a week)  asked if I had eaten today which in 18 months of having them this time, no one ever had. Her time was up but she asked and asked if she could make me something. Technically without having bathed me anything I couldn’t make for myself she is not allowed to do. Strange and arbitrary but true. I am also in theory supposed to help her but while that was always emotionally exhausting now that it is also physically so I get a pass on that one. Since my beloved dog is a safety hazard, and must remain in another room at all times merely because he is a dog (imagine if a dog could have autism. Oh the never ending supply of untruths they could rain down on his tiny head) and I am not willing to subject him to the torment of having me out of his sight bathing even when it was needed is not going to happen. I fell a scary amount of times a few months ago because my little safety hazard needs to see me but he is my primary support I almost said person…  He is my constant and devoted companion. In a world that looks at me strangely,  views hospitalizing me when I get sick enough from totally avoidable stressors as somehow more the done thing than say providing more and much cheaper support, my dog is the most useful support I have. Don’t tell my doctor but my nagging abandonment issue is based on Shadow’s furry life span issue not any human being coming or going especially those the government pays. I tell him he could have done better for his human. I secretly do doubt that though as I sometimes also joke if not for the spiritual and logistical issues with being reincarnated as my dog that’s what I would be in my next life.

The problem is like for every human I know of 100 percent for sure this is likely the only life I have. It is because of that sacred. My casemanager was a bit flumoxed when trying to bring visions of eternal damnation into play should I think of killing myself when I said oh technically Jews are a bit vague on the afterlife and there was no such thing as eternal damanation for us. She seized on G-d as if thrown a  lifeline despite her professed lack of belief.  I had to explain well yes of course belief in G-d was fundamental but not this weird one you couldn’t fight with about things. That by definition a Jew struggles with G-d so in theory I didn’t need to submit to some other person’s version as G-d as the struggle is the point. Yes we have a few rules. All of which can be broken to save a life. There is no added exemption clause for a life like mine. I am here so my life is sacred period. No buts.

Without my faith and it’s community I may have killed myself or died from contemptible neglect of society to my needs. Sadly they use the fact my faith community so strongly helped me when it was most needed to actually further excuse any assiseance that I am technically allowed in policies that are enshrined in law.

My life, however hard, is not just as a spiritual matter worth saving but as an ethical one. As is every life. On a purely spiritual level life or the worth of a life is simply not ours to decide.  On an ethical one that works for me too actually. Any slide from a position that all of humankind is equal and equally deserving of the things that sustain life if not one that people subscribe to as part of their spiritual journey, is it too much to hope some of them appreciate the danger they put themselves and others in when they depart from that point?

Returning to autism. The fact that some do become taxpayers is not the reason we say to Voldemort Speaks that no  you may not catastrophize our condition and rob us of our humanity. Please no one ever think I am more deserving of not having my humanity ripped from me than someone lying on a mat in a developing country who never says a word. If you wish to oppose this group please do so but don’t grasp at things that by your having reached for them devalues people.

Quiet No More

It has been pretty silent here. In the past month I have attempted a few posts that wound up not being something I felt I could put up for one reason or the other.

On the first of May I went into hospital. I was depressed for one thing and my doctor wanted some tests one to try to qualify me for the ever elusive services so we would not continue on the wheel we had been on of function worse services increase, first sign of improvement services decrease, x amount of time passes no appropriate services at all ad then repeat.

He thought it would be a few weeks. Since they can’t actually treat my depression I don’t think he expected to try too hard on that but they ran a lot of test and scans while they were at it and I was a total and complete mess. Months of dysfunctional eating had screwed up pretty well every thing in the chemistry panel and so on.

My doctor couldn’t quite resist one horrific kind of treatment which I may or may not describe later. He’s a good man with good ethics and I do believe he wanted to help and was probably subject to doctor peer pressure a little… I don’t know. It was awful and harmful and while he did stop it sooner than some would have, saying he thought it had been more harmful than helpful it’s still hard.

So then he thought well let’s eliminate some stress and get some more health things taken care of. The problem with that approach was of course they kept finding big things not small things. I came out of hospital looking like I certainly still should be in…  My knee surgery came up while I was still in so when I finally was wheeled home 3.5 months later it was with a brace on, and an indwelling catheter and a host of new medical woes to be looked into in the months to come.

Through all of this 18 months from when not being able to deal effectively with change blew my life so course until now I have sometimes felt guilty when I blog or read blogs. I felt like I had a dirty secret about my autism that I just realized while commenting elsewhere isn’t so awful.

When there were autism positive flash blogs at a time when I knew mine would likely cost me my freedom at least for awhile again I couldn’t be possible. Off and on for the past 18 months I have felt so angry at my autism. It feels taboo to admit it. Tonight thought I realized why it shouldn’t be. Why I had probably been ashamed for no good reason…

I have a lot wrong with me. Probably in terms of disability the next most serious is my arthritis. I was replying to a comment on a blog about how the response to the attempted murder of an autistic child was dehumanizing to autistics. Despite that being the central premise of the post someone commented calling the victim a burden and out came my deep dark secret.

I was trying to explain why it is never okay no matter how much harder than average it is to lose sight of the person’s humanity. That in my own case I had done that a bit to myself this past week apologizing for being a source of stress and the family member in question wrote back to remind me of everything else I was. (Considerably more positive than stressful thankfully because in my depression I had lost sight of that)

I admitted I get mad at my autism. I do imagine that without it 18 months later I wouldn’t be hanging on by less than a fingernail. It is big to move for everyone. One of the higher things on the stress scale I gather but millions of millions of people do it all the time and very view are still totally messed up 18 months later.

Still the anger I feel about the degree to which my autism makes dealing with change not just difficult but for nearly every kind of change close to impossible isn’t really that different from the anger I feel when my arthritis eats up yet more of my mobility and there is a mismatch between what I think I should be capable of doing and what I can. In both cases you feel angry, you reach acceptance and then you move on. In the case of my current upheaval I do seem to be breaking records in the not able to move on category but that does not make me less than human.

I had felt like a traitor to the cause I think at times when I felt anger or even fear when it came to my autism. Sometimes I feel like it may have cost me things I dearly wanted even though it might be more accurate to think a medical system that makes artificial barriers when it comes to autism and decides who gets support based on things that don’t have anything to do with their actual autism could be a culprit there.

Very recently someone who has never met me made a decision about the only service there is for me at the moment, The  only service outside of hospital that ever had any success but this administrator has never met me. She concluded it wasn’t clear enough the service even helped me and therefore didn’t want me to have it. In the end she had to agree to every other day for a month. Her reluctance to have me seems to have trickled down to staff who previously were capable of treating me like a human but now focus on that date and making sure I don’t get a second too much of service. Somehow this week a a doctor’s appointment they had nothing to do with and Rosh Hashanah counted as service so  saw them all of twice not the three to four times we should have.

I cried about this when I heard. Right now things are very tough for me most of the time I am alone. Without services I have no chance. I felt angry too as since I had very noticeably gotten worse each time service from them dipped below about 4 days it couldn’t be clearer I benefited. My case manager pointed out I don’t get better and my affect doesn’t always match how I am feeling.

I felt discriminated against based on having multiple disabilities. My autism causes the affect mismatch. It sets up this weird situation where if I fall into a routine activity I guess I just do that activity and the other concerns are absent for a bit. I look better but when asked how I feel – the examination of which isn’t part of the activity- I have to answer truthfully and the answer hasn’t been good lately.

Apparently as far as depression goes it is very rare that a person doesn’t respond by the 4th medication prescribed so we have a support system that is geared pretty much entirely to a quick chemical recovery and I don’t fit. My autism gets blamed for the medications not working rightly or wrongly. My autism gets blamed for other interactions with the various teams being tricky (rightly in those cases I suppose) but is it fair that while extremely acute my level of service was based not on that but by the perception of someone who has never met me? Even the team members who don’t especially like me know about the affect mismatch and I would be surprised if anyone who ever worked more than 6 times with me could say with a straight face I did not benefit.

No I don’t get well. Part of why I don’t get well in a nice circular way is the continual stress over services and support. Part of why they don’t see me get well is even at the longest time frame they offer they are not around long enough to see it. With this one I have wondered if I will see it.

My battles are not that different of a parent with a child with autism. Services and support being the usual things that drive people to despair. I get it. Because I am also depressed unfortunately the lack of those things has caused me to want to give up but I have done the appropriate thing when that was the case. The option when you feel that bad is not a good one. I imagine if there was a separate child me I had the charge of and I could not cope it would not be nice to have to say as much. To accept whatever might come of saying this is too hard. Something awful will happen. However it would be the only ethical action to take.

So now my dirty secret is out. I sometimes am angry about my autism. I sometimes wonder what my life would be like  without it. I am not quite sure having typed something similar in a comment why I felt such shame about feeling like that for so long because of course it is so similar to every other condition I have that is a departure from the “norm”. If it is okay to cry at the mobility arthritis robs from me well why feel like a traitor for crying sometimes about my autism?

Part of why I was hesitant to blog again is everything is still in turmoil. I have resumed some of my usual activities in creative ways for now because of the immobilizer on my leg. I have resumed my part time work although I do it from bed. (Don’t get any fanciful ideas about what I do for my work based on that)  I am doing my best but it’s been stressful and hard and I know my doctor isn’t sure what his next logical move is. He’s semi-annoyed at my orthopedic surgeon for not doing the first kind of operation he planned. I would have been immobile longer giving him more time to scramble to find something better than the 100 minutes of really low quality house cleaning that will soon be all the support I get period. Oh and the 60 minutes a month of my shrink, various and sundry other specialists slicing and dicing my body etc…

Still and all although I spent the bulk of my life identifying as an alien within myself to get me through the day, and even though I had a doctor who eventually announced I was right about that due to him concluding the sum total of everything different about me must be something in and of itself and wanting to look into that I am 99.99 percent sure I am human. While the occasional twerp has compared me to an animal and so forth the only one who gets to take away my humanity is myself. I do reserve the right to opt out of being human when too many humans appear to be doing and saying inhumane things.

People can only do what they can do and I have not had the energy to be out there too much on the outraged front as far as the latest event goes. I know there will be more until the culture we have changes entirely. It has to be challenged every single time any rationalization is made for killing a person based on well anything. I was going to say disability but recently someone was murdered in a brutal way for being transgendered and that is not okay either.

It is possible to say no it’s not okay to murder because your child, or charge has this or that and the mean school district or mental health people, or various other service providers are being insanely difficult. You can in fact acknowledge the many ways we could build a better system without linking the need for that to murder. We need better support in my own case not so I don’t succumb to my depression and give up totally but so that I can become a tax-payer. I may score in the totally hopeless range in the scales for daily living and adaptive behaviour but on the IQ test we had quite the opposite score so how did I get to be 45 and still be a drain on the taxpayer instead of paying taxes? It’s easier?  I fall through the cracks? Those questions are the reasons I am told but I phrased them as questions to highlight how silly it is.

My bottom line when I try to explain why my current life makes me unhappy comes down to it lacking a lot of the things that adults take for granted their lives will contain often without too much effort. If I thought all those things were truly impossible I would not get upset about it at this point. I would make my peace with it much like I know I will never climb a glacier again. It is knowing I could do so much better with support and knowing how horrifying my life is without it that makes me upset.

Ultimately I guess I cannot dictate to people as much as I would like to that whenever they see a rationalization for murder they challenge it.  For anyone but myself I cannot say please you can say how they system needs improving without linking the current state to an excuse for murder and so it goes.  I took a lot of tests this summer. Blood was drawn maybe 50 times and the one thing that did not come up in all those tests is that I lack humanity so please don’t rob people like myself of it with thoughtless comments.

G-d, Acceptance and the Autistic Spectrum

My sister-in-law pointed out that parts  of this blog post are a little confusing as they assume familarity with the events that were going on politically around disability at the time in the US)  I don’t think I would have gotten anything out at all if I had had to clarify too much my concerns about how autism is viewed and at the time I wrote it I was spending a lot of time in a virtual huddle with people in blogs and facebook following things so I was a bit blind to what might need explaining to those not as entrenched in the political aspects of disability) It’s true my English teachers would have subtracted marks for it but sometimes you just have to get words out.

 

G-d, Acceptance and the Autistic Spectrum

Years ago I wrote about G-d as far as autism goes. I wasn’t going to tackle that subject in my first actual new article for a number of reasons.

The first was one of those reasons is I am reluctant to express something that could be seen as the notion of people with disabilities are somehow more special in the candy coated ways that circulate on the internet now and in the “olden days” in print media, and make me cringe.

The second was was followup to my journey as far as love goes a discussion G-d is actually a step backwards. Related to the first reason, I had a certainty as far as G-d goes before I knew that’s what people called that presence. I have a certainty of G-d’s love for me that is far less shakeable than the human variety and of mine for G-d.

The third is probably the worst reason not to address the issue. People who don’t believe might dismiss everything else I have to say as it’s clear in the minds of some people that a belief in G-d, and intelligence are mutually incompatible. For some reason they identify all people with a religion of any sorts as belonging to the fringes of their faith and therefore have and no doubt will again ridicule things I don’t actually believe.

When I first addressed the issue many years ago it was in response to the question, “How do you feel about G-d?” I took it literally and replied I liked G-d. When I found out the root of the question was the notion that abstract things are hard for autistic people and secondly that if I had somehow managed to get my mind around the concept of G-d was I angry with G-d?

I will start with the original question I guess before getting to the reason I concluded I would write about this today rather than the topic I had all written out in my head.

Despite have a switch that no amount of reading and exposure to literature is stuck in a default mode of concrete and literal, I do not recall a time when G-d was something abstract to me. For many years in fact G-d may have been the least abstract of all.

I had some time when I was more typical as far as my distance from the world when I was young. Those times occur periodically now even when I am under great stress but for a time I had the luxury of mainly being an observer in a world that hadn’t made up it’s mind what expectations to have of me yet. When words started to have meaning I still had some time left in observer mode and by the time I was willing to have sustained interactions with people long enough to have any sway over me my mind was long past the point where religious education would have made a difference to my version of G-d.

G-d having always felt present and real for reasons I can’t properly articulate is not abstract. I do wish I could because often these sort of questions come from people longing to include their child in whatever faith they belong too. Of course G-d and structured religious observance are very separate things and for now we will leave the broader issues related to inclusion as a separate thing. I will attempt to tackle it at some point because it is a topic much discussed and seldom really properly achieved.

My father fell at one point into the people in my third reason for not taking this on. He had survived World War two in occupied Denmark as a person of Jewish descent. I don’t know if that is what made him so adamant in his atheism for sure but in the aftermath of that a lot of people of all varieties of backgrounds couldn’t believe anymore.

My father took his atheism to a degree most don’t. When I reached an age where he could teach me things he would explain how there was not only no G-d, but also no beauty or love. All three of these things were crutches for the less intelligent. We should respect their beliefs but pity them for being so stupid they needed them.

He had a forestry background so he could very much prove that what we describe as beautiful is actually functional. I suppose he thought he could lead me in a sort of backwards argument from design to share his belief system. I was willing to be flexible on beauty. I wasn’t entirely certain about human love that being a somewhat long journey for me but about G-d he met his match.

There was a time I was angry at my father for trying to impose these beliefs on me. Now that I am older I feel a twinge of sympathy for him as it must be incredibly frustrating to believe you can improve the world by bringing intelligent offspring into the world, have that offspring’s intelligence questioned (and by extension you own superiority) and when no one was questioning it anymore still not be able to make a dent in what must have seemed like the easiest of the three to convince me of.

So what does all this have to do with today? Why did I choose this topic. One that is hard for me to express today? One that I never feel I can adequately convey to a largely neurotypical audience. (or even many of my fellow dwellers on the spectrum)

I chose it today because the last two weeks have been filled with an incredible amount of spin as far as autism goes. Important goings on in the US and the like that dragged all the truly anti-science, autism as tragedy, people out of the woodwork and somehow they were allowed the lions share of the media time and as a partial consequence the US ratifying a UN treaty on the rights of the disabled didn’t happen.

It may not have happened in any case as somehow disability rights are somehow tied to abortion issues in the minds of people I can’t really understand at all. Not because they are neurotypical but because they are so illogical. Also because some of them choose to disrespectfully drag G-d in to prop up their irrationality and at times hate.

Even if one was adamantly opposed to abortion in pretty well 100 percent of circumstances then wouldn’t it make some sense to ensure the lives of those who are born are better? Entitled to some basic protections usually extended just by virtue of being human? Trying to get my mind around their oddly paradoxical stance and where the G-d I believe in enters into is far harder than believing in G-d. I suspect this must be the case for a lot of people or that segment of the population wouldn’t generate so much political comedy.

Except this wasn’t funny.

It wasn’t funny because for every other group on the planet including other disabilities the hyperbolic, nonsense that was heard would at the very least be considered not politically correct but a more accurate assessment of it would be hate speech. If you doubt the latter try inserting some other minorities into the transcripts you can find on C-Span.

I made some attempt to lighten the grim and disbelieving mood of some when tsunami was included in the long list of horrible things those with autism and the “epidemic” of autism is. I said we should claim that for our own as of all of them a tsunami has power. I may just get a t-shirt made warning people that that is what I am in fact. Not a tsunami somehow spreading my autism but a counter-tsunami against those with a financial stake in perpetuating myths about autism. Those with an emotional stake in believing those myths who are frankly as much victims here as autistic people no matter what mean things they say. Those who say they can love a person with autism but not autism.

So you might be asking where does G-d come in other than tangentially invoked by the “enemy camp” as it wages war on me and my kind? I could have addressed this whole issue from many other more comfortable angles after all. Why G-d? Shouldn’t I after all be even more angry with G-d in the wake of the pain all this caused? Shouldn’t I have attempted more of the logical kind of attacks on the arguments that are so very easy?

The answer is in the second word. Acceptance. Like speech it gets talked of more often than not as somewhat binary. Perhaps a journey to get there but most people talk of acceptance as a done deal. I have written about it that way in the past myself which is why I didn’t just recycle an old article.

In truth acceptance is a continuous process for me. Naturally it is easiest during the relatively stable parts of my life span. Times when the consequences of being autistic haven’t totally blown your world apart in ways you can’t really get a handle on how to begin to reassemble it. Yep. It’s easy to accept your autism at a time like that. The kind of assaults made on myself and my autistic brethren would have been easy to dismiss. Or I would have looked at it in an entirely logical way and no doubt have fired off a few letters but it wouldn’t leave me feeling shaken a week later.

I am prone to very severe depressions. It’s a very common co-morbidity with autism which for reasons that escape me neither the health system nor disability services can help much with it. They told me years ago mine would never be treatable and offered up a cingulotomy as my only option. (In some ways even more chilling than a lobotomy)

In a year where having to leave my home of 14 years plunged me into what has been my worst and longest lasting depression ever,  as I was completely and utterly unable to cope with that change shouldn’t I even be agreeing with the tragedy model of autism? Shouldn’t I be really, really, angry at G-d.?

No and no. I am no saint as far as arguing with G-d goes. As a Jew theologically it’s perfectly okay to do just that. I don’t have to repent for it in fact it’s a bit definitional. I do beg, and plead sometimes that maybe, just maybe the tap could get turned down a notch. I don’t just have autism and chronic treatment resistant depression but very severe (and of course treatment resistant) arthritis and so it goes. Much of my family is sick and my life circumstances right now are abysmal.

I can’t be angry with G-d though. Not because I think he is still into smiting people. I can’t be angry because the ongoing foundation of the continuous process of coming to terms with my autism and it’s consequences is rooted in the years I spent alone with G-d. I know for a fact that however the rest of the world may feel G-d loves me.

Well sure some people will say now. G-d is love. Of course G-d loves you. Some of those same people though will also be keen to tell me how G-d loves me so much I will be perfect in the afterlife. Nearly all of those people are perfectly nice people and don’t even really see how hurtful a statement that gives them hope could be.

They don’t see that that is essentially the desire that I be someone else down the road. Granted it’s a road that my own faith has some uncertainty even exists but it is still really a statement that yes I accept your autism for now. I accept it because at some point down the road you will be perfect.

The first time I encountered a large scale assault on my person-hood by proxy was of course on the internet. Many years ago I came close to being banned from a group for passionately stating that I am as I am meant to be and the G-d I believe in wouldn’t alter me at some later date so radically that I am no longer me. That presumably since G-d loves me that love unlike the kind many humans profess is for the whole package.

Autism is pervasive. People sometimes see that term and not give much thought to what it means. Since it is also developmental what I take that to mean is it has shaped pretty much everything I experience and thus the person I am. I’ve had even other autistic people object to this as over-ally deterministic but I can’t find a good neurological basis to quibble with it.

Unlike other conditions which may shape part of you autism is in the brain. The bits you can actually see of it are not but that’s where it lives. That incredibly complex organ through which all reality is filtered. How can there be a non-autistic me that is still me? Why would I want that or view that as somehow paradise like? Take away my arthritis and although a quarter of a century of dealing with pain and decline has no doubt shaped me a bit I would still be essentially myself. The same could be said about pretty well everything even oddly enough my depressions which also live there because that is not a constant state. I wasn’t born depressed. I am not always depressed and no matter how long they last depression is a deviation from my usual self.

So this vision that is somehow hope inspiring for many leaves me chilled to the very core. I love G-d. When I was younger because so many people say this I actually had some fear that this might be true. How does one accept oneself when even G-d apparently views you as needing tinkering to truly make things a paradise for your loved ones?

When largely neurotypical humans dehumanize people with autism in way that again could be funny given our supposed lack of empathy is one of their stronger talking points right now, G-d’s acceptance and love is the foundation upon which I rebuild my own acceptance. That solid, rock of conviction in the centre of me that is G-d to me, when I am hurting less arms me with courage. A very shakeable courage granted. One that has me trembling even now.

When I truly listen as to the answer to why do I have to be autistic when with my intelligence and other gifts something much more spectacular might have come of my life the answer comes from there. Even when I doubt it I am reminded I am not only lovable but loved. Not loved because one day I will be something else. Not loved in that syrupy way where I am placed here to be a learning experience for others that will test and then strengthen their faith but loved as I am.

So why does any of that matter so much? Anyone who has ever gone past grade 8 in a semi-decent school encounter’s Maslow’s hierarchy of needs. All the basic stuff is in there and the essential premise is the lower order things like food must be met first to ascend up the ladder. Since this is my blog and not an academic paper which I did write on the topic I will say Maslow is wrong.

People can go a fairly long time without much of what is there, or diminished quantities thereof but without meaning why? I get sometimes in the absence of an actual clinical depression what I call existential depressions where I wonder why the heck am I here, taking up space and not accomplishing much. At this point in this very long post you might be able to guess where the answer comes from.

The atheists and agnostics out there might try to be nice at this point and conclude okay the tragic figure writing this needs to believe all this to keep going. To give her a sense of purpose. So she has constructed a theology and an illusion to give that purpose extra oomph in ways that are not too dissimilar I suppose from the very ways my father insisted stupid people did.

My faith is strong enough that I don’t really even have to go there. G-d exists. G-d loves me. As to the existential bits the less abstract part of meaning is mission. If I accept the previous premises and I do. Then what’s my role?

I occupy a weird spot on the autistic spectrum. I’ve been kicked off lists for being too low-functioning. I have been deprived of life sustaining services for being too intelligent. Diagnostically people again treat functioning as fixed when in reality how severely your autism is impacting your life depends on a lot of other factors. So why be caught in what is probably one of the more uncomfortable autistic realities where it’s really no ones job to look after you but you can’t actually look after yourself?

The only answer that has made sense to me comes in the form of what I view as duties. To try my best to make things better for the next generation of those on the spectrum. To try my best to express things that others cannot express. To be that counter-tsunami opposing the storm of voices yelling words that strip me and my kind of my humanity. The constant flea on the back of massive organizations that have twisting the reality of autism as in their best interests. You can’t really raise money on the premise after all that autism comes in a variety of forms and that with appropriate supports all autistic people would have a better quality of life. Why can’t you though?

Why do we have to be cancers, and plagues and burdens to get people to write cheques to groups who then spend the bulk of that money perpetuating those same images. Again if it wasn’t so painful there would be some comedic value in that autistic people are supposed to be so concrete yet many people can only sort of define us by marching in step to a completely hyperbolic, tiny violin playing tragedy model.

Wait, you are going to say. You, yourself describe your life as hellish a lot. How isn’t it a tragedy that you live this life? You have as point there. The tragedy though isn’t my autism. It’s the ways of viewing it that create artificial distinctions among a group that by definition share key traits that are in fact quite disabling. These distinctions mean the majority of people with autism get no real help outside their families although there is regional variation there.

My gifts and talents go largely wasted not because I have autism but because people make money focusing on the very small portion of the autistic spectrum guaranteed to get the most cheques written. Even though people spend the vast majority of their lives as adults and the majority of those with autism do not actually have intelligence deficits those are too places the line gets drawn. The third is sometimes speech.

I very much doubt the adult autistic reality will alter in my lifetime. Sometimes when I read things I wrote 11 years ago I wonder if some of my optimism about how things were improving was totally misplaced. It would be easier to throw up my hands in despair, give in to the many nights of temptation just to walk into the sea and be done with it.

It would be easier and I can’t say the thought doesn’t cross my mind right now more than it should but it’s not what G-d wants from me. That really would be a life wasted much more so than now.

I am not alone in howling back against those who seek to make us less than human. Years ago there was no autistic culture. No way to support one another and then along came the internet. If one can say any group needed the internet more my money would be on those with autism.

Not everyone fighting the stereotypes gets their courage and conviction from G-d. I’m far from the most courageous one in the battle even. Although if one defines courage and beauty as Kierkegaard did as repetition then repeatedly throwing oneself into an onslaught of dehumanization from better armed and funded opponents will have to do for courage. You can call me a plague, a burden, an epidemic, a tragedy, waste of intelligence, and yes please, even a tsunami. Yet to the extent I am able I will reply I am Kis. I am human. I am as I am meant to be. If my life and the lives of those with autism seem tragic to you then by all means do something more productive than denying our humanity and basic rights.

So for me that is why I exist. That’s why in the face of acceptance being an ongoing battle this is a fight I could only be in with the conviction that comes from G-d. A G-d that loves me unconditionally. That loves me as a person in my own right. So illogical, hyperbolic, unethical spin-doctors say what you will of me. It might even hurt a bit, for a time. Yet I will just have to get up and launch myself back in some form or the other at you. You will dismiss me, ignore me and even block me. You cannot however, deny me something which wasn’t granted by you in the first place. While I may sometimes question why I would even want to be the same species as people who drag their own autistic kids to hearings where they say all this hurtful stuff at the end of the day I am not only human I am the human I am meant to be.

Hyperbolic, illogical, insensitive, unethical people can only hurt me temporarily. I wish I could say they don’t matter but since they are skewing the vision of autism at the moment sadly they do. Luckily for me none of them will ever read this.

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