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

 

Advertisements

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.

 

A Painfully Analogous Blog Description

A few days ago on Emma’s Hope Book Ariane wrote about the realization of how frustrating it must be to communicate something clearly by behaviour and have everyone not realize what it was you wanted.

http://emmashopebook.com/2014/03/04/picture-day-moments/

I thought at the time that the grand frustration of an epic day like picture day for both Emma and her mother on realizing the people at school had not been able to work out what Emma was trying to indicate and had thought her family wouldn’t want a picture was so sadly perfect for every day life as autistic.

The last few years have been horrible on a scale so epic for me that even in a life where little goes right I have started to wonder. At multiple junctures when things could have perhaps made some progress towards decreased stress, some return to functioning levels I had once had one day catastrophically bad decisions were made by those with power over me.

In the post before what apparently was a worrisome silence to some of my followers (Sorry about that) I described the horror of having a medical issue I did know needed attending to but lacking the ability to do that myself.

People who live lives often dependent on how those who are supposed to help them won’t be surprised I don’t think that the first casualty of this was my case manager In a way that seems baffling despite in theory understanding my challenges she felt upset by the week that had proceeded her showing up to see if I was alive. That is having done all the communication I thought I needed with her and needing a period of total rest from even my digital life this combined by my, in theory, understandable inability to simply move into a mindset where she could take me immediately to a clinic when she came by made me impossible.

I understand I am difficult. That most of the things that make me so are quite well known as being part of autistic life doesn’t seem to make me easier. Why is hard for me to totally understand. I proposed immediately that instead she dispatch someone to accompany me the next day but I could almost see the stress storm rolling in.

So of course she quit. At the moment of me biggest need while she has been my case-manger it seemed like the logical thing to do. Protect herself from the horror of having to cope with me one minute longer.

Things had been going downhill for some time. Part of her panic I am sure on the issue of if I was alive or dead was that if I was in fact dead the issue of her failure to reengage with me in the community which if I had been dead would have come up as an issue for sure. I am sure that as an issue versus my actually being dead was a bigger stressor. No one seems to have much hope that I will live anyway.

However bad that was though I admit while this case manager had problems understanding me and while I stressed her out in ways that leave me feeling more guilty than betrayed by the timing of her exist because it is after all always the disabled person’s fault when people can’t understand them sigh…

It sped up my being pushed into the arms of a program that I had resisted for months. My reality is that despite having spent part of an overly long period of time in hospital qualifying for services specific to autism the people who deliver them will employ more resources showing I don’t than anyone can to say I do. If you need intensive services and have the notion they should be appropriate to your needs well that’s one you will have to give up or face the prospect of having your life stripped of all that gives it meaning because ethically a person with as horrible health and as horrible scores on measures of daily living competencies cannot live alone.

This knowledge hasn’t changed and I could apparently be ignored almost completely for months at a time but when things worsen ignore the knowledge they have that I should not be on my own becomes something they will solve either by putting me in a group home that always has vacancies as it is all females. Does it bother them at all that everyone else there is elderly and has been on such strong medication for a lifetime that their ability to do much at all is no longer there and that I have nothing but gender in common at all? I guess not.

So while agreeing with my doctor 100 percent that the only time forward progress had been made was when I had intensive daily support the people who would provide it worried me. People kept dismissing how much it worried me but it turns out I was not worried enough.

The program in question came into being to treat the intersection of mental health and criminal justice. In my area addictions are a mental health issue. One which for some people is about as untreatable as my depression. The mandate of the program had been broadened so they could become the dung heap of last resort without regard to the needs of the people places on it but the number of days you need to take up in other more expensive beds still seems to have made it hard for a law-abiding, non-addicted, autistic person with physical health in a state of collapse to ever qualify.

I am not minimizing in any way those who struggle with addictions to the point of being in a revolving door where whether it will open leaving them under a bush, or in one form of penal bed or the other is about the only random bit. None of them qualify for a shelter bed most of the time because of course if you have used substances very few will take you.

It’s a horrifying life in it’s own right and one where the system also fails. I still don’t think setting it up so they can fail me even worse from the get go with a program that all protocols come from a model of service delivery that doesn’t intersect with my reality at all is a solution.

I had been without a depression for a dozen years. I do not think of myself as depressive on the whole as when I get them they are inevitably for autistic reasons. I often think they are untreatable just because the continuous feedback loop of the stressful ways they go about it makes everything about how I function so much worse that I do indeed feel hopeless but who wouldn’t?

In the years since this started the capacities I have had have sunk and sunk which is predictable. A lifetime of viewing my speech as unreliable I could usually predict all the same when I would have issues. Enter the team I have had to dub the sucktastic support team.

The claim to make decisions in partnership with their clients. I do not know what that claim is based on because my case manager quickly claimed I was the one client they found this impossible with. I thought really. So often do team members excuse themselves because someone needs rounding up from under a bush for a probation appointment that I think it really cannot be the same guy. On a caseload of the chronically unhousable, some of whom if too long goes before the relative stability of one penal system or the other, will meet tragic and grisly ends. I don’t feel that I belong on the program with my house and address, and some work but to be the most difficult on it is certainly over-achievement in the field of being difficult even for me.

Because this team won’t plan and for most of their caseload cannot plan they have an astonishing capacity to render me speechless. While once the kind of triggering events that would leave me without the ability for some time were almost entirely, with a few exceptions, limited to medical types of situations now they happen so regularly.

The same failure to see my behaviour as communication occurs. The same inability to reconcile the capabilities I have with what they see and what people say I need. I cannot say they try hard based on available evidence.

All initial enthusiasm about me as at least a win in the housing column faded. All concessions about how they handle me which they agreed to they revoked. Most unforgivably for me the agreement that any reduction in service would only occur after consulting with me. 20 hours after that was said someone came by to tell me it had been reduced.

The spontaneous fury that rose in me scares me looking back. It happens. At the time I was attached to a medical vac. treating a complication. In the swift flying of my hands to my face that became separated from my leg but the person leaving this news was one of only two people on that team who even listen so after she was gone and I had collapsed in tears and sleep for days to come. Sleep to ensure more horrors did not happen in the hopelessness of this betrayal and knowing the spin that would go on my behaviour.

As one of the few who treat me as human at all in the way people treat humans I felt guilty it was her who had to view this but feeling guilty for something as uncontrollable as that is not useful or even fair to myself. A few weeks into this program my doctor expressed concern about how much I seemed to be blaming myself for things that are not controllable but while on one level I know it a dent has made with the consistent refrain of try harder. Do better. Be something other than who you are in other words.

For people who believe in functioning labels as static and meaning anything as they are used in autism I am too “high functioning” for the sort of epic meltdown that occurred. This is nonsense of course but that is is their view. A view which they will not check against any book or source from myself, or my doctor (both equally suspect as our versions of my reality are too similar) but they will cling to.

The chose early on to have in a two week period 13 different people see me. I found out at the meeting where I was told that the worst was over and that I would be consulted that this was based on a reality that isn’t mine. They felt without the need to check that in a crisis if a stranger had to attend to me it would be worse. In reality in the kind of crisis they would know about they tend to dispatch strangers anyway but as more of an imploder I would be so deep within myself who if they did send anyone. Was there would barely register. Still no need to ask me before embarking on something which no one left here thinking wasn’t harmful to me.

In the logic of service provision that them coming made me worse. That I spoke seldom and often backed right up as levels of stress increased and no support around the very key issues of eating and drinking happened this was not their failure. In my every day stress they did not reach what seems like the more logical conclusion to me that they should indeed space it out a bit. That they should support the basics of life which was a large part of why I needed intensive support.

Of course that would have meant thinking my behaviour or lack of it had meaning. I don’t really understand how people miss this. I was still in elementary school I am pretty sure behaviour as communication comes up and nearly everyone on this team has at least one degree and if not at least a certificate where this should come up.

Sometimes between my own experience and reading that of others I think newly minted “experts” have every useful thing fall straight out of their brains because how do they get from they are making me worse without wondering what role their own behaviour had in this all the way to seeing me less?

I still don’t know. They keep changing their minds about what drove that decision. At first they said I had so many medical appointments that it would make no real difference. They make my appointments though and having communicated multiple times I cannot take more than 3 in a week that too has been ignored of course.

Now they say I too often closed the door on staff and refused to cooperate so it was a waste. Of course they had made the first service reduction decision after a string where they seemed understanding of the horrible stress I was under and no one seemed to care if I responded or not and most fled without even trying to connect. Those who persisted a bit often found eventually I would respond but that would put them further behind of course so why try?

They had also made the second one all the way to three days all of which inevitably have appointments so no other aspect of my life is supported before any of the incidents they found recent problems. My failure to adjust to a sudden change of plan and being too polite to yell and scream I tried to say I was expecting you in half an hour and I cannot quickly get ready and then do groceries before physio.

I plan my day well in advance and faced with a sudden change how to even find my clothes in the time before physio was in doubt but shopping is stressful. Physio no picnic. Combined with a sudden change and it was not going to happen. Losing all words when my trying to explain was met with well they didn’t have time to do it any other way I shut the door and went and curled up on my bed both in fear and frustration. This was not a person I trusted to render events accurately even as they stood.

Twice in the past month I have been called to account for all the ways I suck as a client. They don’t call it that of course. The first time that autism was a bigger part of the diagnostic picture seemed to upset a person who last knew me 20 years ago when support in the community was no only real but it was possible to have more of it than you cold handle. Any downturn in my health then was handled by a swift return to a hospital setting so while the support team he worked on seldom saw me at my very worst my overall issues have not changed.

I would not have said the equally ridiculous that he too had changed in all those years. Yet it is a source of a conviction I could do better if I was more personally responsible. That I could only be this is we first get a long stable period, regain some skills that were based in another environment and don’t starve to death first seems sensible to me but not to them.

When I said on being summoned for a second time to a meeting that was about the managers responsibility to protect his teams from the horrors of dealing with me so if he could find a way to drop me he would. (Bad luck for him as of course many of their clients are difficult in ways the average member of society would refuse to deal with so there is no mechanism for it)

I had said if it was going to be a long list of my failure to be personally responsible for things I either never had been able to do or hadn’t been able to do in a long time I would go so there was an attempt to re-frame it as a business partnership.

I was a bad partner in my own health. Gee? Really? They quickly refused to communicate by email. When if ever I see my caemanager I don’t know. To this day she thinks a surprise you have an appointment today approach is okay but I am a bad partner. As he framed it as a business partnership I had to point out that those tend to be equal. We would have of course had all the various contractual obligations of both parties well hammered out ahead of and in contract form and when they failed to do so I would use the legal mechanism available to seek recompense from the courts.

However stressed I am don’t say something stupid and hope if I can speak I won’t be able to point out that as a quick change in how they wanted to frame the same grievances I won’t be able to swat that down. Of course this does me no favours as this seems “high-functioning”. I can kill his argument re-framing in under 2 minutes but be rendered speechless over and over by sudden changes or stupid decisions. I must be making up part of it.

That had come up. That I had to be acting to some degree because how else do I make sense? Gee I don’t know because there are lots of autistic people just like me and indeed one of the current improvements in the DSM is that notions of capacity versus demand are right in the definition. But yes it certainly makes more sense to think a person with skills so epic at pretending to be screwed up would do it to torture them rather than say go off an earn too much money by putting those skills to work in the entertainment industry.

I was also guilty of using the protections available to me as a client of a program where some actual abuses had occurred. This was causing a paperwork nightmare. So too was that the nurses who see me for wound care have felt they need to leave a long paper trail as they are not primarily responsible for supporting my eating or anything but that I was losing weight at an alarming and visible rate was something they felt they needed to act on and document that action as my discharge from their regular attention was looming.

In the past 6 years I have led countless volunteer teams in an unrelated industry entirely and being known for high standards I would have fired any one of my team members with even the smallest amount of responsibility for being unprofessional enough to whine to their subordinates or anyone else in a way this epic. Sadly I cannot fire this guy. The government pays him a ridiculous amount of money and he wants to spend some of his time blaming me for their failures to wrap their head around me? You bet I will take that up with people above him.

In the reductivist narrative of my life that would reduce the value of it because of what I cost society what about what it costs that nearly everyone who earns part of their income failing to support me appropriately is paid handsomely to do so? Shouldn’t their pay be based on meeting my needs at least to some degree? Shouldn’t as much time at least by spent meeting them as meeting about me and deciding what the catch phrase of the month is about how horrible I am?

When you are a child in the best case scenario you will have a parent who is apologetic at the failures of people to realize you have competencies and however you communicate your needs or fears it is communication.

As an adult there is no such protection. In the health system playing well with others is valued so they almost eerily form visions of me that the bulk of the team can recite word for word. The people who refuse to do so still indicate they need to be a part of the team because they are among the most disposable.

So I can’t speak out with the few who do listen because I don’t suck enough as a human to make their work harder which it is apparently if they speak against the group think about me.

When I was just entering adulthood I had notions of a life nothing like this. I would collect degree after degree and that I did not remember to eat it would not matter. Droves of students hoping to win favour with me would always be around to supply useful things like food and drink whether any of them set themselves apart from the herd or not enough for me to learn their names. I had seen this very thing with professors I knew did not bother with such trivialities as the names of those eager to be of use as one said to me he remembered me and went on to say although he is required to teach two courses and supervise multiple graduate students that was true of less than a handful of people. An echo of how lonely my father had warned me when I was still quite young life would be.

Of course life did not unfold according to a plan that would have seen me live in the seldom labeled as such but fairly sheltered environment of academia.

The sadness of the life not accomplished is a sadness but it is not frustrating in the way the failure for things to improve for autistic people is.

I have multiple physically degenerative issues and the prognosis on one of those seems to be in mid revision to even more grim. There is my autism. If I had never felt any grief or sadness or hopelessness maybe I would not somehow also be considered a mental health issue but as the service providers of easiest access they are hard to escape.

My entire life for months has been lived with the horrible knowledge if they do not improve or try in any way to meet the needs they indicated they understood I had I might die. In my most miserable moment I think the paperwork nightmare explaining how someone referred with that as one of the critical issues in need of intensive support dies on their watch is some sort of revenge but I would prefer to live.

During the meeting of the long list of ways I suck at being a good partner in my health I did eventually flee. Fight or flight kicks in. It’s something in itself worrying as a few times it has kicked in and where I might wind up was potentially not safe.

That day the final time I was ordered to sit down I didn’t. I know they can kill you with their words. The hopelessness of them never believing anything real about the real you while simultaneously refusing to consult my doctors notes on the matter is too much.

The inane complaint I am somehow not trying hard enough when the amount of effort it takes to be with them for a single minute or to have persisted through the worst 27 months of my life how do I respond?

If effort was the solution I would be so danged healthy I could work on my agenda for assuming control of the entire planet… As dictators go I would be awesome truly. When I was in politics while an awesome background person that I was unelectable was a given. Yet one never gives up ones hopes of power and how swiftly I would reverse all the expensive ways we fund abuse and ignorance would be a help.

One of the strange problems that goes with my autism is I can in fact communicate well and in a number of languages. Except when I can’t but somehow the times I cannot or even that a communication disorder is consider a key part of it means no one has to listen to me. Any issue with communication is always mine by definition. The well paid people who currently completely refuse to even try to communicate with me don’t have to. What would be the point? I am impossible.

If it were not that the people who do not find me impossible are all pretty similar as far as having the same values I live by I would start to wonder. The depressing thing is that being honest to the degree I expect and ethical is not the majority position for the people with power over me. Yelling at me to “Speak damn it” and then letting me out in traffic while crying so hard I nearly got mowed down is in group speak assertion not abuse.

That’s my reality. I don’t know for how much longer it will be because if I actually manage to fire this team my posterior will wind up in a place where I can not have the things that give meaning to my life. Equally unsuitable but somewhere along the line my value as a person around here sunk so low that things that matter a lot to me don’t matter at all to those who make decisions.

The difficult thing is they have not been able to strip me of my legal competence although two people have warned me that as soon as my current doctor is transitioned right out that will be quick to remedy and I know they are right. It can be half way removed by telephone and whatever they say about that not being enough that almost any doctor would simply sign off on it being fully removed without much worry about the ethics of it is certain.

I sometimes think beyond the fact I have yet to pull of a nice short blog the whole depressing reality of my life can’t be very appetizing for people.

That little alters in some fundamental ways from the tiny child I was once convinced it was my kindergarten teacher about to be in deep trouble for the scandalous way things were run in what didn’t seem very school like but which I was powerless to communicate and equally as powerless when locked in a battle of wills with a larger adult (unlike my parents she didn’t have the sense to know she should have surrendered as soon as she saw I could walk) . To now. In between there have been times where things proceed in ways that I would want but the underlying fundamental reality of how swift people make the wrong decisions and judge you in all sorts of ways hasn’t changed.

There is no point in screaming because while understandable that would violate the rules of the health authority. They could then totally deny you services until you were a corpse. Well granted I would have to scream specific things but it is a good thing that so seldom have I reached for profanity in my entire life that even now if I yell at all it is more on target of what is true at least until I flee.

I never try to judge life of any kind but the ongoing trauma of having mine judges and devalued combined with the knowledge that any time I fail to behave as expected that will be one more grievance in the long list against me makes me more than sad. I am not even sure I know a word to describe how I feel.

That the every day usually unnoticed by others because they take place away from eyes that might care frustrations of living this way are difficult. I cannot imagine being anything else of course and I do not think because people so horribly fail to meet my needs that that makes autism tragic as meeting them would be simple if a paradigm shift happened where however I was communicating I was valuable and when that communication was shutting a door or fleeing as fast as a person as physically challenged as I am at the moment it would still have to be taken as not me behaving badly but as communication about an intolerable situation. A failure to meet a need.

It’s never picture day when you are an adult but the mindset of those looking at your behaviour doesn’t seem to have changed.

Paralyzing Fear meets Medical Need

416111_3028021694076_399525806_oI have a very autistic, very avoidable problem right now. Well the beginning part was not avoidable but how bad it got could have been I guess.

Last Tuesday I scalded my leg. I am hypo-sensitive and have had operations so what I feel isn’t always there. I had had a number of near misses with boiling water and managed to break my teapot as well so although I diligently checked the first 4 or so times this time I didn’t. I changed my pajamas without much thought and moved on.

The next night as I came in from my dogs last use of the outdoor facilities I found my pajamas were again wet and my leg hurt. That time I checked and what I saw was a fairly large burn had burst. Worse it was on an area where I had had surgery which explained a bit combined with the whole hypo sensitive thing how what looked like a very bad burn could be missed.

Any of that could happen and not point to an issue with how autistic adults are supported here. It’s that 10 days after the burn that it hasn’t been attended to that bothers me.

My case-manager alarmed not to hear from me for a few days before this came to check that I was alive the day after this happened. I mentioned it hoping she or my doctor would think to set things up in a less alarming way because he whole let’s go to the clinic now or hospital doesn’t now and has never worked for me.

When I saw my doctor on Tuesday a lot of it was taken up with my case manager quitting. Or my being pressed into opting out of it. I cannot talk to strangers on the phone. It’s one of those strange places where my ability to lead an adult life breaks down.

I had been aggravating in a number of ways I guess including wanting t see that doctor over another but which choice I should make was never spelled out. I prefer to see the one who kind of helps with the others as I know they don’t all have a solid handle sometimes on even things like how much I understand as the jerkiest of them probably never hear me speak. I am not getting started on how I feel on that topic.

So now with no help at all I have to go out into the world. Even the nicest doctor is going to be a bit upset by this whole taking ten days to do anything. My life is stressful and avoiding things that will blow my brain apart takes time.

It’s bad. I know it was actually quite bad from the start but ten days of neglect didn’t help it. That transitions are hard is a known thing so I can’t wrap my head totally around the fact that the obvious solution of simply arranging a support person to come the next day didn’t happen. I have frequently asked about these support workers. I have had two times in 3 months times when they showed up in my life, Once was for 3 seconds and the other time as transportation. What I need is actual support.

So I sit here scared. I sit here wishing I was not an adult as this is not something I can do alone.

I sit here wondering why when I have so many medical issues and life issues it is actually ethical to decrease support. It doesn’t feel ethical.

I get I am “impossible”. Well I am not actually. That was where I felt frustrated enough to opt out of something I need a bit too fast. I had explained the ground rules for communicating with me too many times it felt like. It should be simple. I mean what I say. If I say I can only manage one doctor a day and no more than three a week (did I mention it’s been a horrible year?) I suppose much like the joke about the man who says I love you and years later tells his wife he would have let her know if it changed, I feel like that’s the rule my appointments should go by.

If I say way too many times that I can’t cope with the bright lights, the noise and the often dehumanizing treatment of me that takes place in our E.R.’s there are solutions. If I could make phone calls I could likely arrange them but nope. I have a specialist for most things including fixing gruesome things so if I were my own case manager I would have contacted him and arranged him to take a look at it in the clinic for that. I am not a good healer so every wound I get is a complicated one and well my life plots against me I think.

None of that happened. Now I have no hope of less stress care. No real hope to be honest of being treated with respect as although this was an accident people will doubt it. People when I do not look at them will joke among themselves as if I am deaf.

Yet I have a life I am attached to. Responsibilities and desires. I am also as my rabbi helpfully reminded me a Jew. Not sure why he reminds me of this so often. The whole life is sacred but my life being a bit of a pain in the posterior to manage is one of the most complicated parts of being one. Hebrew is hard if you have no visual processing skills and dyslexia but clinging to notions that your life is sacred when all around you people are making jokes about your distress is hard.

So obviously I have to act. Fall into a void I know will be filled with horrors. So of I go with my heart hammering. There is no comfort object large enough for this task. Skipping it and just waiting to go to temple is tempting but not correct. I waited until the world was darker but there are more ways to deal with light and noise than the cruelty of people.

I am not afraid of any procedures this will involve. I know they are not pleasant but it is the people at the other end of the rubber glove that terrify me. The random mean things they say. I doubt I will fall apart so badly someone will compare the care of me to the care of an animal as has happened but there is a lot of room from there to compassionate acceptance.

I don’t know for sure I will be able to explain what happened as I know multiple people will want to know that. It seems really dumb even for me except this is my life.

A really concrete example of life as an autistic adult. I sometimes feel like the most inept autistic adult out there when I see what people are dong and saying but I know of course others struggle. Others have little issues that become big because where they intersect with the world is too unbearable.

So I will dress and launch myself out the door into Shabbat. Not one of peace I suspect but Shabbat can surprise me. Please let it surprise me. Please let the people surprise me.

Shabbat Shalom.

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.

 

 

 

 

 

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.