Invisible Lives

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

 

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

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

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

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

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

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

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

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

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

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

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

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

 

Digital StillCameraPurk

 

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Warning April is coming!

It’s that time of year again. April fast approaches and with it the scramble to not so much become aware of autism but to be seen to be aware. Like any condition where being aware of it is “cool” there will be the usual Facebook things. For autism for whatever reason the colour of choice is blue. Like cancer awareness, autism awareness is an industry in and of itself.

You can buy blue accessories to show the world how aware you are. Along with any other number of things that really don’t do much for actual autistics at all. The foundation that shall not be named (I have chosen to treat this especially noxious group much like Voldemort is in the Harry Potter universe) will make a very hefty sum of money in April as will many other groups.  The raise money for autism trend is spreading so you can buy all sorts of things where a portion of the profits go towards something autism related. The rest of the profits of course are exactly that.

Perhaps the most controversial awareness thing right now though was a push to get people to spend two hours being silent with the premise that would give them an idea of what it is to be a non-verbal autistic. It was called The Six Degree Project https://www.facebook.com/TheSixDegreeProject . Proceeds from some dashing scarves – since you can’t have awareness without accessories these days go to the Canadian version of the foundation that shall not be named. While slightly less noxious than the original version that’s the easy thing to object to so let’s get that out of the way and tackle head on why this does nothing for autism awareness.

The ability to speak is only a tiny fraction of communication. It’s communication that is impaired in autism. Over-valuing speech as a component of communication or of autism for that matter is both bad science and a huge step backwards. The ability to produce speech is one of the more straightforward bits of communication. Some do, some don’t and some fall somewhere in between.  Autistics experience communication issues of a wide variety far beyond their capacity to produce speech.

Let’s look though at speech. There is a tendency to view those who are non-speaking as more autistic somehow or more severe. It’s a tendency not a fact. A tendency that some non-speaking people have challenged quite feriously.

This campaign is seen as very legitimate and heart warming because it is proposed on the Facebook page of someone who is not speaking. This alone is enough for people to label her severe. In the NT universe not speaking somehow grants additional autism credibilty whereas in autistic culture it is the quality of your ideas and how you express them that grants it. I once watched a documentary about someone I had known on a list serve for years and I had never actually known they didn’t speak. They were not viewed as less capable or more severe than any one else within our group. In fact they were one of the obvious leaders in the group that someone might pick out from the outside as being a leader.  It doesn’t seem to matter to the people describing this person as severe that she is able to post on Facebook or come up with these ideas. While that in itself has been debated I don’t see that as a productive path to go down. Never having heard of this person or project until two days ago I will stick to why a few hours of not speaking in no ways simulates being autistic.

My speech was delayed. A number of complicating factors make it hard to know how much of it was autism and how much was other reasons. In adulthood I consider myself unreliably verbal. That’s the strange thing about the focus on speech is whether a person is verbal or not is one of the first things that gets asked. It’s treated as if there are only two options despite the kind of issues I have not being all that rare that having obtained speech that speech might be unreliable is not discussed much. People say autistics think in black and white but so much about the condition is treated that way when we ourselves say that the reality is more complicated. I guess it’s understandable. If society puts a high premium on speech and attaches all sorts of meanings to the ability to do so that it doesn’t really have you don’t want to hear about the gray area. It’s a bit depressing isn’t it that someone could spend time in speech therapy, by middle aged and still have the ability to speak not be reliable. It’s usually there but there is that uncertainty. Uncertainty isn’t nice so who wants to hear that?

So back to the whole you can spend two hours choosing to be silent (while wearing an expensive blue scarf) and know what it is to be autistic. I have trouble understanding how it even makes sense. Clearly all you are experiencing is not talking. Not only not talking but choosing to not talk.

An actual autistic person might also be having trouble understanding what is being said around them, coping wth the speed with which things get said, if they understand the words many of the subtle things that actually make up the bulk of communication may be lost on them or require a great deal of effort to work out.

Communication is impaired for all people with autism and while progress may be made in various areas throughout a lifespan  it remains impaired to some degree by definition. For autistics communication will involve work and interpretation having to go on that the neurologically typical simply don’t experience. It’s taxing and exhausting and even if you can speak you may not be able to rely on that speech being available when you need it to be or even an option in some situations.

If you know you can’t speak and no one expects you to that’s a fair bit less stressful than unreliable speech. I remember the time before I spoke at all and the time I seldom spoke as relatively “nice” times by comparison to having to react to the sudden absence of a capacity people think I have. It usually departs in reaction to stress but the build up of stressors isn’t always clear to me so occasionally I have been completely oblivious to the fact it was about to fail me. The sudden inability to speak has risked my health at times, and having to factor in that this could happen to a careplan skews how people view me.

Still as stressful as that is that’s only one aspect of my autism. Only one aspect of anyone’s autism. So if I was purely non-speaking and you were trying to become more aware of what my life is like just opting out of talking would barely scratch the surface.

How would you simulate having to guess if people were joking or not? How would you experience the feelings of shame and stupidity that sometimes happen when you guess wrong? The inability to tell if someone is mad at you or not? If you did speak people suddenly getting mad at you because of an issue with your tone of voice? If you were trying to simulate life for the unreliably verbal how to stimulate the panic and frustration when you need those words and they are not there or the rush to wrap up a conversation when you feel the stress building and suspect you will soon be without words.

What about the lovely experience which I have described before of people making assumptions about your intelligence based on the absence of speech? If you have never heard the care of yourself compared to how a vet cares for an animal you haven’t experienced life in these shoes.

That’s just a small sampling of communication related issues since speech falls in that category but it’s such a small part of the overall picture.

How about dealing with whatever combination of communication difficulties you have while simultaneously having to deal with being unsure socially, and overwhelmed on a sensory level.

Not talking is not going to make you understand the social isolation that accompanies autism. Imagine always observing a world that appears to contain people like you but never quite being able to “crack the code”. Never really understanding those people who look like you but move smoothly in the world, knowing what to say and do. Who seem meant for the planet you live on in a way you are not. No amount of observing them will make you one of them and that’s a painful thing to live with. No hours spent in silence will give you any understanding of this.

The people who are communicating their objections most clearly and most specifically about the project are of course autistic. Of course you ask? Wait I thought there was a communication problem with autism. I thought that was your whole objection that speech is a tiny part of communication which is a tiny part of autism. Yes. Which is why those who have lived their whole life with it understood that the communication issue was on their side will communicate the clearest. We know exactly what communication mistakes get made and for the most part try not to make them. So although generalizations are being flung about it’s not by those on the spectrum. For objecting we get to be told we are vilifying a person even though people have been very clear that it is the project we object to and not the person. A distinction that isn’t always made when people speak about autistic self-advocates. Those badly behaving autistics do get villified almost daily. We get to watch the consequences to their health and wonder what kind of world do we live in when some of that money those dashing blue scarves, and puzzle ribbons and all the paraphenalia with which people have proclaimed their autism awareness goes to support attacks on adults with autism. So we are all very careful to say it’s the project not the person we are objecting to but our caution is not noted. We have failed to follow the agenda.

If you read the thread on the Facebook page you could actually get a better notion of what it is really like to be voiceless. To be voiceless is not the same as to not be able to speak because what you see on the page is a lot of politely written, careful to not insult the person, messages about why this is inadequate and what you see over and over again on the neurologically typical end is the kind of will-full fingers in the ears la-la-lala we can’t hear you,  that is the true root of our voicelessness.

Autism is in industry and nothing threatens that industry quite as much as listening to those who actually live it. Those who live it and won’t be poster people to raise money for an agenda we don’t support.  It’s not an inability to speak or even a communication issue with the autistic person that leaves us without a voice in the month supposedly about us. It’s that people only want to listen to a handful of pet autistics. Those that best fit the image that raises the money. Those autistics that people can respond to with glib enthusiasm and purchases funding research into prevention of autism. They, you see, manage to be heart-warming while our blood goes cold in the face of the enthusiastic fund-raising supporting preventing more people like us. The well behaved ones appear to be being exploited but that’s only my opinion. I can’t know one way or the other anything about such a carefully managed presentation. Within the adult autistic community the internet has given us the ability to be a community and some of us have known each other a long time while new media bring new comrades to our lives, it’s a long fight overall. A fight to have an actual voice. Not because some of us can’t speak but because too many people don’t want to hear what is being said.

We know how this will end. April will march on with an unrelenting supply of events like this. Those of us who protest will be called names, and insulted. While we may say “nothing about us without us”. and may even be able to claim some victories on that front (quickly pounced upon by the Voldemort foundation of course) what won’t happen in the month of April is that more people will be interested in an honest version of life with autism versus cute blue accessories and the appearance of being autism aware.

Every one of us not toeing the April agenda set by the Voldemort Foundation will be told several thousand times how lucky we are to be able to express ourselves. Lucky? Way to dismiss the herculean effort that had to be put into that. Lucky when no one wants to hear it anyway? Lucky when the way it is used is sometimes synonymous with not being as autistic as so and so or not really being autistic?  Our right to speak about our experience will be questioned. How legitimately autistic some are will no doubt come up. That the very reason we are objecting is precisely because some cannot object  is lost on those who feel the need to remind us of this. I was about to say you wouldn’t trivilize and monetize other conditions this way but of course it happens with alarming frequency. Still it doesn’t get to happen about autism without at least some fighting back. That the majority view of the adult community will be largely ignored isn’t news to any of us. We’ve lived through a fair few Aprils since someone saw the cash potential in autism.

April will be a nice illustration of communication disorder in action for sure but not because people are mimicking the inability to speak. It’s always a nice show of a receptive communication disorder and with more than a week of March to go this April is not disappointing that way.