On Black And White Thinking and Other Annoyances

When I state my opinions about some things if the audience knows I am autistic I sometimes am rebutted not by their own opinion but that my thoughts are the product of black and white thinking.

This baffles me on a few levels really. While I understand someone out there (well numerous someones) has characterized autistic thinking that way do they think we are incapable of seeing the views in between? Or for the sorts of things people go around having opinions about that some waving around between positions is even a good thing?

Here are some things I am black and white about –

You can’t kill people because they have a “horrific” label like autism

The group I call Voldemort Speaks needs to disband.

The world needs more acts of love and less talking about love

Honesty is the only policy.

Every human not only deserves dignity and respect but society needs to make sure they get it.

Most people are smarter than the experts think.

Speech is not the sum total of all communication.

Being able to speak does not say anything about other competencies.

Well that’s the short list. I could go on of course but I would enter the realm of my own life to a degree that would leave people a bit too baffled.

My main problem when I get dismissed by this method because labeling it black and white is a fast way to end the conversation is that just because someone thinks it is so, and even if it looks that way on any issue I care a lot about it is apparently so hard to make another case that we need to queue the oh poor her she can’t see other opinions.

I wish that were the case. I have had other opinions acted out on me. I have seen them acted out on others. Since they did harm I would think people need to be a little more shades of grey overall. Perhaps it is some terrible neurological affliction that the unlabeled masses have that they sway all over the place over fairly short spans of time. I don’t really know but I do know that being dismissed on things I think a lot about with any reference to my autism is frustrating beyond words.

Just like if there is a communication problem that involves me I am not always the problem. This one comes up a lot. Granted sometimes I cannot communicate by the usual methods. Sometimes I need break from those ways but when I do communicate very clearly about some issues I doubt it is my problem if someone spends 8 days trying to change my mind. Good luck with that would seem a bit flip I guess. But is it so radical a notion that having lived as me for 45 long years now I might just have a better sense of what is possible for me any given day than someone who has the joys of managing me as a case? I think yes but majority opinion says no. That I will never sway any of them to my position does make me wonder who exactly is more firmly entrenched in if not black and white thinking at least normative institutional thinking. I am the one with more labels than seems reasonable so of course I have no clue about what is good for me or what is possible. All health care and service provision seems to operate from this stance even though when I was a service provider I am pretty sure respecting the client took up a good chunk of the handbook and the attitudes questionnaire and screening essay questions.

There really is a right and a wrong for more things than humans tell themselves. Sometimes it can be fun to be a little bit “bad” of course and those sort of behavioural deviations from the straight and narrow as they call it are not a big concern. What concerns me are bigger moral issues.

I have written about lying before. People I think refuse to give me credit for being honest as in theory I would be a terrible liar. Yet I could have learned to tell the kind of social lies people tell if I believed that was a good route to go. I spent years actively resisting social scripts deemed useful and even enlisting converts to the whole living honestly.

At this stage in my life the only way it has backfired if you can call it that is people often seek my opinion who otherwise may not have. Rather tangentially related to my life people suddenly want to know things out of their confidence that I will tell the truth and other people will be nice when being nice won’t be helpful.

I do not consider it a bad thing that my integrity is not eroded by the accumulation of social lies and the slide into more ambitious ones. I don’t think it is a product of my autism as I have been lied to be autistic.

When forming opinions past the information gathering stage, which too many people seem to skip, I do consider the extremes of the issue and work out my stance sometimes over years. If someone then sums up my opinion as not worth entertaining because it is black and white then yes I will question this whole how useful is to socially engage thing.

I belong to a group that has been catastrophized to a degree I didn’t even think possible. People’s notions of autism when I was young were not that accurate but the kind of hate that is directed at the label now should really be considered criminally unacceptable. Many countries have laws against hate speech and yet it continues to go on. It inspires violence against autistics and when the worst case scenarios happen, that is when autistic people are killed society tends to champion the killer.

We could use a lot less grey here I think. Sometimes my autistic peers have a laugh at the whole society seems to have forgotten we are actually human but there is an underlying sadness in our games. Games that the experts also say we are incapable of but hey my opinion on anyone thinking they are an expert on matters pertaining to people other than themselves is not exactly high.

I try to live in a way that does good. Sometimes people are offended by it but I take the long view to that as occasionally in being offended it sparks off a thought process. I know I am not right about everything as that would be very obnoxious and like a good debate but on matters that boil down to the application of ethical values it is hard to see how firmness is a bad thing.

In matters less vital of course I slip and slide. If I applied my mind to making a position on everything I would run out of time for pretty well everything. The dog in my life knows my positions with regard to him that are thought out are I do not own him and he is not by being a dog entitled to less thought about his needs than I am by being human. He does milk these positions a bit much as he seems to think that means he can get away with just about anything but ours is a close relationship so of course there is give and take. I have told him that he should try and support himself but he plays the dog card there. It’s a work in progress.

Opinions on autism change and will always change. What cannot happen is for the masses to forget yes we are still people. We are still entitled to any right or protection normally given to people in our areas and so on. If someone wants to call those opinions black and white go for it. I will still hold them. Even when actions by the society around me make me pretty sure they forgot some of this I will keep underlining those positions.

If you want grey here’s grey. Currently most aspects of my life are pretty catastrophic. There is o denying that. That does not mean that I am though. There is a distinction. It is a source of hurt that some aspects of my life are artificially difficult. That is the means exist to ease some major stressors almost instantly but the powers that be or society at large doesn’t do it.

For 23 months and 1 day my life seems to have plotted how to break down in as many areas as possible. My body is it’s main co-conspirator but it was ever thus. Most people who know even half of how bad or plain weird or almost absurd it gets can’t quite wrap their minds about it but in all of this there are times of joy. Less than I might like but they exist.

I laughed doing my work in the wee hours of the morning. I laughed at a few other things. I also cried because life is not easy but it is a life. A human life. While a colleague did say I could be an AI the other day that wasn’t dehumanizing so much as a product of my distance from my place of work so while a few people have spoken to me no one has met me. We shared a good run of AI related jokes and I went to sleep.

Whatever happens one stress I do not need is the steady clamour of propaganda telling me how awful autism is. Telling me all sorts of lies. I will give them my life is hard but as they are about 18 percent of my current stress if they would just shut-up it would get slightly less so. As they feed too many opinions who knows how much of the rest might go away?

I have seen my blog mentioned in a few random places to support ideas I do not support. That is by granting yes I have a disability and yes my life is hard at times, even very hard somehow everything else I have said about my life doesn’t matter.

I studied psychology. I had to study the DSM for longer than anyone should have to I suspect so my notions of what can be said about any person’s autism and still have them fit diagnostic standards may be a bit rigid but it is a rigid format. I will never be someone who says my autism is only a good thing because if that were the case technically I would not have it. Currently since the issue that started my 23 month cruise with instability is most certainly a byproduct of autism, and some of my more major bodily malfunctions are not aided by it I can’t swing to that extreme.

I guess the only good function of Voldemort Speaks may be that it makes me a moderate. By saying I am autistic but I am human. My life matters to me. I should not have been prevented. I struggle but show me a person who doesn’t. I struggle harder than I need to so please society try harder to remove barriers and problems that don’t need to exist I am moderate in comparison. I know they view all those statements as radical but that is their problem.

It gets gritty in the trenches of being me. They are most certainly trenches right now but it is fun as well. Chanukah just brought me more days in a row of being dragged from my home than seemed fair but also laughter and latkes.

I suspect any day now that an accident I had and didn’t know about for too long and then couldn’t cope with what it takes to get it seen to will require surgery. So will several other things simmering away as I said earlier by body is my life’s main co-conspirator but while definitely lacking the capacity to deal with it today I either will or dealing with it will be thrust upon me.

In the meantime there is my dog, the internet, my work and tomorrow. I suspect all four of them will serve up a spectrum of delight and agony and everything in between collectively. I enjoy the dog, the internet and perversely my work so I guess tomorrow is the main suspect in the lineup for the gritty bits but not a lot of point of subtracting any happiness from today just because eventually a lot of unpleasant things will need to be dealt with.

Since I am being radical what with the liking my work and insisting that my life has value despite the indisputably hard parts would it be too radical to suggest that for the issues that matter most everyone try to be a bit more binary? There is a place at the table for dialogue but not propaganda I think. Attitudes are a potential thief of joy and the world needs more joy.

People often think my own attitude needs adjusting for some reason but it’s about right for the life I currently have. For some reason many people also regard me as a pessimist but on the things that need to change front I think I am pretty optimistic. While there has been no sign that society as a whole will suddenly see me as just part of society as a whole say the bits could improve for that to be normative behaviour.

In my city locals do this thing that people often ask about. When it started I was perplexed too. I had to defend it to several people when I was still thinking okay it is illogical but it seems to increase happiness phase with it. People on exiting the bus say thank you. Everyone does it unless they are distracted. It’s not rational behaviour in a way as of course the bus driver is paid for this exact thing but it makes the bus a better place. Which in a weird circular logic makes the bus driver (or the population at large) worth thanking.

So what if people could change normative behaviours about autism? Stop reflexively supporting Voldemort Speaks because of all that good they supposedly do. Stop believing my life is not valuable. Start doing something as radical as treating all people in ways that recognize their humanity?

I don’t really see how any other position makes sense of course but then again I have a “problem” with black and white thinking,

Well he's black and white some days.

Well he’s black and white some days.

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Since Everyone is Posting About Voldemort Speaks

What follows is a comment I made on a blog. In my usual way I got to the end and then thought hmm that’s long enough to be a blog post so for once I am going to actually post what I said. I apologize to regular readers as it is repetitive of things I have said here in the past. My opinion of this group has not altered much since their founding.

I didn’t want to ignore what went on today as far as either their attempt to further monopolize the debate or on a much happier note my autistic peers rallying to oppose them. Perhaps if Voldemort Speaks didn’t so totally dismiss autistics they might have wondered about the wisdom of meeting the night after the Autistic Self Advocacy Networks gala. They were concerned enough to bring it the DC chief of police the night before but he thankfully was not one who shared a vision of what is in the US a constitutional right of freedom and assembly being violated.

20 years ago I hoped that the internet would improve the whole experience of autism for the next generation of autistics. It has. My own ambitions for it back then were small. I hoped it would be less lonely, that people would know the joy of being with like minded people and so on. That a protest could be put together pretty fast and celebrated the world over was not even on my wish list. A huge thank you to those who spent precious energy and coping skills to put it together, to anticipate obstacles, and to be there.

Thanks also to every parent ally who cheered not only the protestors on but many autistic voices out there.

So on to my comment I guess. I could have written something fresh but my comment was more than long enough. I suppose I seldom make brief ones.:

My own experiences with my own autism have been no picnic. I don’t really believe in high and low functioning because depending when in my life people were deciding that I have been all over the place and I know I am not alone in that. Things looked bleak for quite awhile then better then bleak and repeat.

I don’t question for a moment the anguish my own mother felt throughout my lifespan. That would have been the case though if I were typical as well. The only real difference is since I wasn’t there were no shortage of people painting out my life in broad brush strokes. No one would have tried that for my siblings.

I had a lot of trouble actually accepting my autism since it was until my arthritis got worse pretty well the only thing I couldn’t just triumph over by sheer force of will. I thought of it in pretty much those terms for way too long. Even when I went with the Star Trek model of being like Data it was unhealthy as  didn’t have some of Data’s options including being in a mostly utopian environment where everyone but Data isn’t all that bothered by the fact he is an android. I thought my programming too would be outgrown. It’s embarrassing to say but I carried on thinking that despite a degree in psych from the university rated as Canada’s best and a solid understanding of autism as it didn’t pertain to me. I don’t know why I did. I had enough knowledge to question only the notion that it could be cured. I knew that for anything labelled as pervasive seated in the brain there simply is no such, meaningful thing.

So even at my own most self-loathing I did know that the notion of loving the child but not the autism was pure bull tweet and no good  would come of any approach where people cling to that. I recall so well hearing things said I should never have heard because people dismissed me. Of course that trend persists even now as my stress related loss of speech shows me over and over how much people confuse possessing the ability with intelligence.

Things have been harder than I would like for almost two years straight now. Hard enough to have me in tears of frustration. Hard enough for the issue of whether I should be in a home again to come up but does someone get to pretty well state I am somehow equal to a natural disaster because I cost a lot? No.

For 24 years I was reminded in my work about how often the default narrative seems to be to describe any child in terms of what they cannot do. When the child has a disability there is an alarming tendency for someone, usually a well payed someone, to make what amount to total guesses about what this kid will ever do.

Voldemort Speaks (not going to depart from my long held tradition of not giving them free publicity) has a monetary interest in painting the bleakest possible view. They’ve used every tactic they can think of too exclude actual autistic voices from that the picture they are painting. In recent years they have taken to buying autistics they seem to view as tame enough to say what they want them to say but even that is not working for them.

If there is a need for centralized fundraising then why not do it in a manner that is respectful and doesn’t question any humans right to exist? Why not do it in ways that are actually educational? Right now they are the number one source of bleakness. I have seen my parent friends in tears often enough from sheer exhaustion to know more doom is not needed.

I had a herculean task yesterday. That task was simply tolerating noise and lights long enough to buy four items so I didn’t starve to death before Friday. Sadly that’s not at all hyperbolic. More services are absolutely needed. Treatment is not something I oppose as long as no one is confused about what needs treating. Respite I am 100 percent behind. It would be a sad state of affairs though if we had to subscribe to the Voldemort Speaks vision to get anything. Oh wait since these sort of direct services are still neither a priority nor a huge budget line item even if we totally buy it in every way we don’t have much to gain and our collective humanity to lose.

Shattered Hopes

I am glad I made a point of talking about the elements of my life that are surprising sources of support or more supportive than one might expect them to be as today was a day of smashing any hope I had managed to build. This is something that seems to happen every half year of so the way support works here. I should have known to expect it.

I spent part of the summer presumably qualifying for supports for my autism. A novelty in my adult life. A program had been created and I tested in the range that should have gained me entry although I wondered as I had heard many stories of people applying but none of people actually getting it. This program might be one of the all too common variety where it’s head thinks the mission is to guard the pile of money the government hands them rather than to actually help someone. I don’t know.

For me the prospect of help that took my autism into account was exciting. I could imagine so many of the things that had been a source of frustration with help based on other things not being an issue. If someone wasn’t coming around because my mood was low they wouldn’t tell me to solve some problem by simply trying harder. Presumably if I had a problem with a texture support based on my autism would not have a worker telling me what a fuss I was making over nothing. I dreamed of people clearly communicating and making sure I actually understood what they meant not what they said (as the two do not match as much as one might hope) Oh the dreams I had. I don’t know why I was foolish enough to even dream them. I had to fight very hard for the right to finish university versus being put on a shelf in a group home and then having finished there was no one to supply just a little support. So we wound up on a different shelf where we watched time go by and people have lives and where everything that other adults had and enjoyed seemed just out of reach. On this shelf we could be exploited but what we could not be was become a full member of society. We could sit and watch those who’s diapers we had changed surpass us in some areas of development as they grew to their mid teens because we had had no help and support around some sensitive areas.

I am 45. I didn’t have silly notions like I would learn to date, and marry and have a family. I thought I would have some help with organization. Some encouragement regarding getting more education and some help finding suitable housing. Small dreams in a way compared to actually having the full kind of life I see all around me. Still that’s what this program claimed to do and they all seemed reasonable with support. I am more than intelligent enough to have my Ph.d I just need a little push, some help jumping the hoops and so it goes.

Today I learned my doctor has doubts these people will ever get back to him in time to set anything up before my current support runs out. Because unsupported would be catastrophic right now he’s in a bit of a panic. I feel like I live outside of time and space in a way right now. I am not in a panic. I am sad that it seems to be going this way but we’ve ridden this merry-go round of the idiotic ways systems work enough times in the past 18 months to be well beyond panic.

All the same when my doctor said he would step aside as my doctor as he was a barrier to my getting support from another program. I said no. He asked what if it were not my choice and what was left of my world felt like it was crashing in around me. The pressure built in my head. The words caught in my throat. I managed a few more exchanges and I knew I was done. I had wisely prepared my backpack when things started to collapse. I protested a few times that “this is a developed country” not managing to get off that stuck track. Not managing to articulate anything really. Certain my world would come to a complete halt if all this happened.

I don’t know what he will decide. I have no intention of being supported yet again by a program that is focussed on my depression not my autism. I have been depression free for periods of up to 12 years whereas I am never autism free so where is the sense of this? I also know inevitably any program that can’t take my autism properly into account will just get fed up with me. They will reach weird conclusions like the one that led to my current services starting at a very low rate. Service providers don’t tend to ask about what they don’t know about. They will just try to fit me into the mold of their other clients and the way I don’t fit the thing that supposedly causes my depression to be untreatable could be ignored. It might be belittled it might be treated as a curiosity. All sorts of outcomes could happen but what won’t happen is I won’t get support that fits my needs. It is up to my needs to fit what is on offer it seems. How dare I defy the biomedical model by not getting well in the usual amount of time? Why on earth do I have multiple conditions? This makes me too much work. Eventually questions of mandate could get me dumped anyway.

I will never know because I have no intention of seeing an unknown doctor and unknown people. I really though that if my doctor took the consistent failure of the system to support me properly through the proper channels the system might bend they would see that it was probably preferable to spend 400 dollars a month on support versus 35,000 on institutionalization. What sort of crazy society do I live in where that is even on the table? I’ve been sentenced without having actually committed a crime although my doctor did admit the support I would get were I to commit one would be vastly superior to anything on offer now.

In the autism community support is the hot topic always. The lack of it contributes to tragedies.  I am very intelligent yet I always need some degree of help to function effectively. In times gone by oddly enough society would have accepted that better than it does now. In non-developed countries outcomes are better so my protest that Canada is a developed country while I meant it to mean they could act more sensibly towards me actually makes no real rational sense.

I have worked hard the past month to rebuild some of my life. The things I can rebuild on my own I have but without some external help it is too tiring. There is so much going on with me beyond the autism but the autism dictates a lot of how I react to those things. We had a care plan in place for my knee operation on what to do if I wound up too stressed too speak. It wasn’t as good as it should have been because although I had mentioned the slowing of speech and the difficulty with it as a more likely outcome most people didn’t recognize it. Nurses sometimes flew out the door before I could get fairly important words out but that is the life I have lived for what has to be considered at least half a lifetime at this point. Some older nurses especially seemed to come on shift wanting to convince me I was just fine as far as the autism went. A lot of nonesene and labels don’t you know?

All of that is behind me. What is in front I don’t know beyond the next few hours. I feel too ripped apart by the news today to trust any health type person. I feel smashed and gutted and simply fed up with all of it. I did everything I was asked and in the end nothing changed for the better at all. The only thing to change is I was almost half a year older.

Was I naive in the first place to think support was obtainable? I am not sure. A lot of my experiences lately make yes the right answer to that question but when I was a young adult I had a period of my life where I actually had too much support so it makes sense especially given the very nice brochure they gave me when I did the tests that I would think okay this could happen doesn’t it?

What actually happened is I hobbled, blinded by tears as fast as I could away from the source of the news. I am a klutz so the walking into several glass doors was a given. I will never understand why they even put those in places where people might cry but they do. I shouldn’t have walked as far or as fast as I did so my knee was not exactly doing well. Five weeks post op seems like a lot but not for a knee operation when you have bad arthritis.

I got home and in this bizarre interlude when I was barely able to keep from crying someone from my congregation came by with meals and groceries. If she suspected how close I was to total collapse she did not say.

I walked the dog and foraged for blackberries.  Sometimes foraging makes me feel better since it says I can take care of myself (although I doubt you could live  on blackberries alone it can be empowering) Tonight it didn’t help. Tonight nothing will. I will do some work and spend hours trying to sleep probably. Tomorrow will be interesting as having concluded the health authority will never actually produce meaningful help my avoidance of the useless and very time limited stuff currently in place will probably aggravate someone. They won’t see it the way it is. That right now the “system” feels like such a source of wounding that anyone sensible would stay away. That in my own way when I don’t answer my phone when they call or am not here if they show up I am protecting myself from further destruction.  Further destruction being hard to imagine actually but that is how it will feel.

As for my doctor I don’t know. He is spread too thin and while he was the best doctor I ever had he’s also become the main deliverer of news I can’t bear. News that seems to seal my fate in ways I don’t want it sealed. I suspect then although I said I would not be okay with him not being my doctor he won’t have much luck being it either,

My case manager asked me earlier in all this as she could see it coming if rigidity was part of autism. It’s rigid on my part that knowing services exist that would help me, and knowing how poorly I function without them, and knowing I qualified for those services that I should get them at some point in a reasonable time frame. She may be right and certainly if I could have been flexible enough to adopt the more hopeless viewpoint all along that I was very likely going to wind up with 100 minutes of cleaning as my only formal support maybe I would feel less smashed to pieces now. Silly me to think when everyone acknowledged that wasn’t enough support that they wouldn’t repeat something that totally failed me again. But they will.

That’s what being an adult with autism can mean some days. With no one to fight your battles for you off you march stupidly trusting that things will be as you think they should. Later you emerge metaphorically bloodied and so distant from the world around you that you are not entirely sure you would notice if a bus hit you. You emerge with no one to send in to battle again for you and want only to get away. You’ve been totally crushed and what it would take to undo that is the very support they have made it clear you will probably never get.

And now to work I suppose. It won’t change anything about my situation but my colleague has expectations of how much work he will se when he wakes up. Unlike the system I meet my obligations.

The Supports We Don’t Expect

416111_3028021694076_399525806_oI live an odd life. Odder now in many ways than decades ago. When I was younger and having problems everyone agreed I lacked informal supports. True enough as a young adult with difficulty making friends who had the ones she did have move away or die or in a few instances say we didn’t have anything in common anymore that was true. During the years when I spent a lot of time dysfunctional in one way or the other the only kind of people you could meet were people who to put it bluntly might not make it. Many of my friends killed themselves. I became afraid to make new ones with good reason.

Then I spent a long time where I was still not exactly a model of functionality but I was free of serious depression. I worked at my job, played in a band and had some hobbies on the computer. I gamed a lot and over time not just gaming but the support of games became part of how I spent my time.  Things were very stable for over a dozen years. Perhaps a bit on the hermity side if you are one of those people who only counts people who you meet in the flesh as friends but the nice constant state was what I needed to do well.

Of course in life change is inevitable. I don’t deal well with positive change truthfully. I found that out a very hard way but negative change is certainly a rough one and so I find myself 18 months into it still teetering along. It feels much like walking a tight rope I guess in that it doesn’t seem like very much could dislodge the narrow grasp I have on leading the life I have.

Still one thing I know about myself is that it isn’t helpful to have huge amounts of time with nothing to fill them so when I got out of hospital I was eager to go to work. This work is one of the supports you don’t expect. Years ago I started to volunteer for a game because it was very like a game I had worked on as a professional when I found out the hard way positive change is hard. I wanted to keep up my skills as I anticipated continued physical decline would mean that I might need to seriously look at working in a field that had begun at a hobby, briefly promised to be very lucrative and then fell apart and was then going to be a hobby again.

I accepted what I think a lot of people might have had a harder time with (the loss of what would have been a substantial monthly income) much better than I accepted losing my place. People wonder why. I think the answer is obvious enough. The chance, however positive to earn big bucks was a big change. It falling apart ultimately meant nothing changed. It seems sad to me when I try to look at it as if I were not myself but that is why I think it took far less time for me to just settle back into my routine and part of that routine when it wasn’t too painful included being pragmatic about how to keep up my skills.

However pragmatic I was being when I applied to work on the first Gameforge game I would work on as a volunteer it was the start of a big support you don’t expect. Since I had a lot of experience I climbed the ranks pretty fast to the highest non-paid position and had the things I was used to in terms of people to supervise and so  on. What I also had was the start of friendships which have grown over the years.

The person I worked for first I still do work for although with might be more accurate even though she is my boss she is very skilled in always making sure he administration team feels it is a collobaration and for the kind of game we currently work on and the community we are it has to be. The person who has the charge of the English speaking community normally  is the head of the game so the admins work stretches a bit more and that has been fine.

I told the person who I have worked with all these years that it is odd that I consider her one of my closest friends despite never having met. That can happen when you work side by side for years on various things I guess. She is just one of many people either on my  current teams or who I have worked with at one point or even some of our players who are a not expected source of support.

At this point I do some paid work on another game and almost immediately after that started my days changed. One might be tempted to question if this was from overwork but that wouldn’t be it. Although in a nightmare of scheduling my first day of work coincided with my first day of Hebrew class. In theory we could have to use French, German or English in or work and then to march off to Hebrew class seemed a bit much. In practice we so seldom get to the bottom of the English work I rarely get to help out anywhere else. It’s also only a theory that we only work in three languages as our players speak every language that can be spoken and can break the rules in any of them. I can recognize an insult against someone’s mother at 30 paces at this point no matter what language you put it in which I suspect isn’t a very transferable skill.

My “real” boss in the sense he is in charge of the project I get paid actual money to work on was claiming pretty fast that he knew I would work well with one of my other big unexpected sources of support which was he hired me which was part of why he did. I gather when your boss makes any claim you should agree but I really wasn’t expecting for the shape of my day to change so completely by this part time job.

I am grateful to have a job I can do right now from my bed. Knee operations take forever to make a full recovery from and this being my third one I knew better than to even think I would be at my desk any time soon. I am more grateful still though to work with people who are genuinely nice and caring.  Just as I am about to go to bed most days I yak with my collegue in Germany so he knows things that came up that might need watching and so on. I always imagined if I was in an office situation I would have to make a special effort not to be too task oriented because I had worked out from tv that people talk about a lot of not work stuff at work. Turns out I can shoot the breeze just fine in text. We do both of course but even on days when we have mainly talked about work somehow I feel better for the contact somehow.

I often also check to see if any of the team I supervise are up and at ’em so I can pass on anything they might need to know or if they have been “slack and idle” as we used to say in cadets remind them about my imaginary whip etc… I suppose a serious downside of supervising people scattered all over the globe is it is a bit harder to get them properly afraid of your whip. Seriously I since many of the volunteers are young adults some of whom hope to be in gaming as a career others with time to kill I like to think I can pass on some useful skills. Lately I have seen some of the people I had as volunteers enter paid positions in our company so I suppose I can take some credit.  I had one team member who had had their interview a week before they interviewed for a job in real life that mine had been so tough the real one had been so easy although they asked a lot of the same stuff he got the job without a problem.  These sorts of things do something that can be hard when mostly you are seen in terms of what you can’t do. They remind you that you do indeed do some things very well. Well enough to teach others how to do it and to supervise them. That can be something you can easily forget when multiple disabilities have you on the sidelines of life a lot of the time.

While we are covering online supports there is of course blogs. I am new to blogs. I was always more of an IRC and an email person and when IRC especially started to lose people to blogs I felt sad but not motivated to blog. It is odd as I always wanted to write when I was young but sharing a very personal story with the world is not easy. Yet there is support here. In the comments mainly but you get to know some people more deeply. The other day my phone rang as someone had been concerned enough to call . A person I have known for well under a year but whom I admire.  Sadly I found out the phone rang after the fact.  I had had my phone off for the Jewish New Year and then for Shabbat and after three days with it off the odds of my finding it and turning it on for Sunday seemed low. I am not a huge phone person but if I had managed to miss it in the comments that people cared I can replay the message.

We spend a lot of time worrying about the lack of formal supports and their limited duration. Fretting that without some we can’t do it and I actually still believe that is probably true for how many things we have going on with us right now but it feels odd in a way because for so many years of my life there was nothing but formal supports. I mentioned all the online supports as I think to many they are less obvious but I have a very global informal support system. I think I get some support from every continent except Antarctica. It may be small and it may sometimes not even look like support but it counts.  Some is huge and when people doubt the validity of those relationships I get cranky.

I think the tendancy to dismiss online supports is they look too much like what an autistic adult might spend “too much” time doing. That is typing away at their computers. Years ago when I had time to play games rather than support them some of my friends were people in those games. I knew as much about their life as I would if they lived next door and we met for coffee often. The slaying of giant “bosses” (for those who don’t game bosses have the most loot and loot is a nice thing) as we got to know each other no doubt made it easier for me to be social and nearly inevitably because with the slaying of bosses comes the dreaded use of some kind of speech needed communication I would have to explain my autism (if it didn’t come up before then) and I don’t recall, unlike real life, a single person ever being a jerk about it.

An offline support that one might leave out of supports we don’t expect has been my congregation. Generally speaking society expects various congregations to help their members with the things that come their way but in my experience how much a group meets that expectation varies a lot. When I came though the door for the first time at my local Jewish Community Centre for services things were still going okay for me. They quickly wouldn’t be and had I never made it through those doors I would have been in a much worse mess.

When my life and my living situation and everything fell totally apart a year and a half ago they took care of every detail. I was just to concentrate on getting well and leave everything to them. Since for the first month I couldn’t get out of bed even if I wanted to I didn’t have a choice but I wasn’t used to it either.

Every previous time in hospital I had been “that patient”. Nurses know the ones. They get no visitors or so few they wind up on the nursing staff radar. You inherit second hand flower boquets and days of tv when other people go home and so on. Last spring my room was so overrun with visitors I more feared that they would get thrown out for being rowdy than the pity I had become pretty used to from the staff. This year the timing was more awkward but I was still well looked after. Food arrives on my doorstep,  people have gotten organized about cooking for me. This year cooking is a special concern because I have lost enough weight for it to be concerning. I had a lot to lose but there is something to sterotypes and you will never convince the friends in my congregation I am not one cracker away from death’s door. It’s been something I have had to adjust to having this level of support in real life. Going to a service or a dinner and knowing when people ask how I am they really do want to know and if they don’t care for the answer they will likely set out to do something about it.

I have played in a band for close to 25 years. It is part of the non-profit, The Friends of Music Society, and as causes go it is a good one. I guess that is why in the seasons when other bands did sniff around for percussionists I stick around. I am also on the board so in a way I expect it now not to be so much support as more work. Still we had our first rehearsal the other night. I am in no shape to be there to be honest. Given I cannot bend my left leg we had known for half a year that there would be no hi-hat at some point but stamina wise it was a bit much for me that first night too.

I don’t know why I don’t expect there to be support there. The support is largely in the familiar people, and the familiar routines.  The other way it is supportive is similar to how when I work I can see the skills I have. The same thing happens at band. With my leg being in a brace people were popping up to arrange things for me and expressing more concern but the rest of the time we were playing and I wasn’t getting a lot of leeway on missed triplets either. I made a pathetic plea for some sympathy as I had opted out of a measure of them thinking I might throw-up if I moved enough to do them but we went back to the beginning of that section all the same. I suspect as long as you have a pulse you won’t get much leeway out of our conductor and that is always how I have liked it. It has made me a better drummer and when we go out and play for the elderly or the public or for group homes it is a positive identification to have versus everything else I might spend some of the week being musician makes a nice break and it wouldn’t be an honest break if it didn’t go with expectations on the part of the conductor.

There are more but I should have been asleep hours ago if I am ever going to reset my sleep schedule. Oh hold on there is one I can’t not mention and that would of course be my dog. He again doesn’t fall in the category of support you don’t expect because you expect a dog to be a support but he is the most spectacular dog in the history of dogs. He had his fifth birthday on Sunday and there really are no words for how much he means to me. When things looked very grim for finding housing that accomadated both of us I did contemplate homelessness.  I am too physically badly off for anyone to let me entertain that notion for more than a half a second. It is however a measure of what he means. I think he goes well beyond what I expected when a month after my previous dog I went to pick up an entirely different dog.  He should have been a female from an entirely different litter and my fate was sealed as soon as I said I better just play with him for a moment or two or I would always wonder. Sorry to that dog that was to be but you should have gotten Shadow to show you some tips in all those weeks you had getting old enough to go to a home.

It’s almost a cliche how much a dog can help I guess and so yes people do expect it but much like congregations I guess there is individual variation. I have never met a dog I didn’t like but Shadow is supportive and important beyond any expectation.

I don’t know what will come. I can make some guesses about some of my issues. Some of the guesses are not good. I don’t know if we will get appropriate support in the appropriate time frame. The odds are against it. Things at time look pretty grim but I do have work I enjoy, colleagues I enjoy, friends both of the online only variety and the in person kind, enough granola bars and ensure to support a couple of city blocks through an earthquake or two, some recreation (not enough according to my sister-in-law) and the best dog in the entire world. So while the darkness and the pain and the fear can be all consuming I have marveled at these other aspects of my life. They don’t erase a lot of what is not going that well but no one can. There’s just so much going on some of which just needs to be dealt with and some of which well I have no idea and those are the things that scare me the most.

Overall the outcome is certainly far from known and that is a source of stress but that’s really the way it always is. It is just most of the time things are set up better to hide this fact from us. For people who were very worried or scared for me I wish I had some great comforting thing to say but I don’t know how things will go. I hoped given we know the formal side of support is going to be a battle and it’s a battle that has historically cost me a lot listing the less formal, sometimes totally unexpected kinds of support would help. Now it is time to help my dog who is currently asleep next to his teddybear on the floor because he gained weight this summer and gave up trying to get back up here into bed and try to sleep myself.