In the wake of my quiet little blog seeing a surge of traffic on a post that had already lived the lifespan of most in my blog up until then – two days tops – a lot of things came up that I thought I would be addressing.
There were the obvious ones arising from various comments in places where it was re-blogged and here. Was Voldemort speaks really still so bad? Can a parent cry about there child and still be accepting of their autism? Is support in any form preferable to no support and so on.
Then there were the issues of feeling a sense of responsibility I didn’t feel when only a few people who would read anything I wrote read my blog. Sure the occasional person stumbled in off the wilds of the internet and some pretty bizarre search terms but for the most part it was quiet. The people who came didn’t comment much which in a way made it quieter as I have a lot of problems generating ideas of what to write about next.
Suddenly there was too much to say though. I was grateful to those who made a point of saying how I had influenced their opinion or even where something I had said had helped their child in some specific way. I was humbled that the blogger at : parentingandstuff.wordpress.com would go from such such a pro Voldemort Speaks position to almost instantly say they had been wrong. It takes courage to say when you are wrong on the internet when everything is forever. Courage to resist the temptation to quietly erase the signs of thoughts you had articulated but have already rethought.
So an avalanche of re-blogs and ping-backs happened. So many that today I saw on some blogs that some of my earlier followers were being made aware of my blog.
I wanted to warn people that not only am I not the consistent of bloggers but that very process of writing that one person referred to as like a freight train doesn’t always result in a piece that can be posted. For the most part something captures my attention. I write until I am done and I am not always done in an orderly manner at all. As often that train like process builds momentum but then goes off on several sidings and a dozen half bogs are born until I save them and surrender for the time being.
Since I have enormous respect for people who say they are wrong right in their blogs. I will get my own out of the way. I was wrong about how my comment would be received that triggered the influx of traffic here. I was afraid it wouldn’t even make it out of moderation and had already sought back up from someone in the “parent camp” to try and make the point I was pretty sure I had failed to.
I backed up my comment as I posted it not really expecting it to escape moderation. I was completely wrong about that and in the process of being completely wrong about that something else came up that someone felt I was completely wrong about.
Someone expressed that they were highly offended that my “about” says I am an adult with autism. That alone apparently making me not worth reading I guess. I had committed a grievous sin of separationist language. Like any community the autistic one has norms.
For those new to the politics of autism seperationist language is undesirble for the most part because it reinforces the notion that there is a person seperate from their autism and all the things I truly do loathe like the notion one can love a person but hate their autism and so on. I think I have made it pretty clear in everything I write that this is not a position I hold. Still there is a norm and I strayed from it.
Long ago many of us had to stand up for the right to call ourselves autistic versus person with autism. I am old enough to have been there when autistic culture was truly in it’s infancy. When each of us was fighting that sort of battle in whatever other arenas we ventured into – the options being much different then they tended to be limited to IRC channels, mailing lists, and newsgroups and of course real life.
Everything I have ever written about my autism is true to the ideology about why you don’t separate out autism from your being. I’ve always been quite clear that there is no non-autistic me. That the very nature of a pervasive, neurologically based, development disorder makes this impossible. It also means should that magic cure ever appear it would not be possible without curing me of being me. I don’t believe such a thing to be possible and as the price is my personhood I wouldn’t accept it. That too I have made clear I thought. The closest I ever came to being banned from an open autism group was when I objected to the notion I would be perfect in heaven, perfect being not autistic. I was genuinely distressed at the very notion and being younger while generally Jewish views on reserection are a bit sparse couldn’t reconcile that with being as G-d intended me to be. I did manage to get myself banned from a group for females on the spectrum for being too low functioning but that’s another story.
The choice in my about is largely stylistic. It’s quite similar to my IRC bio and contains a string of withs that it is simply awkward to make into a grammatically sensible, smooth flowing piece without them all being withs. Since people who interact with me know how firm I am on the topic and that I refer to myself as autistic and to my fellow autistics far more often than any other phrasing it wasn’t a choice based on ideology at all.
Had it been based on anything other then the smooth flow to be honest I may still have chosen to put it that way. If the aim is to communicate in a way that builds bridges of understanding knowing that the majority of people have been normed to regard non-person first language as wrong and certainly having had to defend myself thousands of times for the non politically correct choice I may still have chosen to go with the wording I have. It wasn’t a conscience choice but knowing that the people who need reaching with my version of what it is to be autistic are not by and large my autistic peers or their friends but those firmly in the clutches of an autistic narrative spun by Voldemort Speaks and other tragedy model organizations I may have chosen it to extend a gentle hand. To not have to be in your face immediately before someone even considers reading anything.
How we phrase things does indeed influence thought but back when autistics were first getting the chance to come together as a global group and the sort of forming, storming and norming that all groups go through would happen this day seemed far away.
So used to having to defend the choice of autistic over person first language, so used to having to reel off the whole long ideology the day when someone might be highly offended at first glance and never really reference the thoughts behind it seemed like it would never come and now that it has like any ideologically mandated limit on how I express myself I am not sure it is a good thing.
The extremism of their being a single right way to portray a reality is no better coming from within than from without. Just as being kicked from a list of people on the spectrum based on people’s mistaken notions of what it means to have been diagnosed with autism not Asperger’s and thus too low functioning isn’t really more palatable than being thrown off a largely parent driven list. (Again for those newish to autism an exclusion criteria for a diagnosis of Asperger’s is of course a pre-existing diagnosis of autism. Asperger’s was not in the book when I was a kid and well it’s in it’s last month of being in the book now. While it was in the book there was a subset who chose to define it as the best kind of autism to have or the mildest when there is nothing in the definition to suggest that concretely.)
To think I must always phrase things a certain way and any deviation from that expression will not be tolerated well at first I had a sort of “whippersnapper” reaction.
That is being old enough to actually have had to sign and have a loyalty oath administered to see the internet in it’s military only form, having been there near the dawn of autistic culture and part of the group who was articulating these ideas to one another on a global scale for the first time ever I wanted to just dismiss the objection as being from some young lad who didn’t even have to fight that fight to the degree the older part of the adult community did.
I was prepared to take offence. To challenge his right to object. Even to sink so low as to enumerate the many ways the contents of his own blog offended me but when I calmed down I realized that what I was seeing was in some ways a coming to fruition of a hope I had articulated when all that was first starting. That computer and the internet would help people with autism so that the next generation would come to things from an increasing position of strength.
I sometimes read what I thought about computers and the enhanced ability to communicate both within the community and without and think I was overly optimistic. But looked at as something other than a criticism levelled at me by someone who neither knows me, nor read enough of my writing to know how clear I am on the underlying point, this was a person who was so strong in his conviction that autistic was preferable he didn’t have to defend that with the paragraph upon paragraphs that used to be necessary. So while I don’t agree that I don’t have the right to some variation in how I describe myself, or that variation is never desirable even the certainty from which he launched his attack is a big part of what we hoped for for those who came after us.
I’m not a fan of compliance though. Or blind compliance and I think a call to obedience about a semantic point that is as limiting as saying one must always use person-first language, while admiring the self-confidence which with the position was forth I reject it. Once a community hits the point that blind adherence to norms is expected some re-examination of the norms is in order. Being stubborn and not someone who complies for compliance sake I am obviously not going to be embraced by those of my peers this is important for. I say that knowing precisely why it is important but think the message is critical and strong enough to stand up to the very occasional variation.
If I refer to myself as autistic the vast majority of time. If I spend hours and hours of my life articulating the reason why person first language makes no sense for a pervasive development disorder I am not willing to go so far as to say I never have any choice at all. That’s an extremism that I reject.
When it isn’t an ideological choice at all but simply a stylistic one chosen for the flow of the words then I will not have the same right to make a wording choice that every other writer has stripped from me. I am not prepared to think having chosen expressions other than autistic for how I describe myself makes me a bad self-advocate.
In a month that we hope to make about awareness while a restatement of the ideology behind the objection is awareness I find the notion that as a result of that there can be only one right way to say something worth rejecting.
Not because I don’t 100 percent believe in the framework that goes into the choice of autistic over person with autism. There are those who believe that any slide into person first language is just that – a slide. That it undermines the foundation that was so painstakingly laid. I’m not one of those. While I know how much language shapes thought, t o have so little faith in those who read as to think that an occasional deviation from the prescribed norm in referring to myself will cause it all to collapse is to have about as much faith as when I made a copy of my comment on the blog in the first place.
Maybe despite never being the compliant type Passover has me even less so. We didn’t fight this fight for so many years to then have it turned into something that is in an oppressive force. I don’t feel I can communicate any sort of message without the same self-referential freedom others have. I joked on Monday when a friend was feeling a strong sense of all the things that were going “wrong” with what was quite a wonderful Seder that we were not going to celebrate our exodus from slavery by being enslaved by the ritual. Nor can we celebrate neuro-diversity from a position where there is only one right way to express that message.
I know the people who feel so much rests on semantics feel that very strongly but I feel as strongly that the entire message is what matters. In a message that has been consistent about there not being a non autistic person separate from myself I will use variations when they are useful or are the least clunky way to express something.
It takes courage to put your words and ideas into the world. While not being brave on many fronts at this particular point in my life and while not being especially trusting about a lot of things I feel like I can trust that the wording of my about will not dilute my overall message. I’m choosing to think as I say that the strength and confidence with which how wrong I was was expressed is actually what we hoped for but with a hint of caution about what an over-zealous notion of the right way to say something could do.
We are all, each of us, different. We bring to any endeavour be it autism awareness or writing or raising a family unique perspectives. Meaningful awareness requires dialogue. Dialogue isn’t possible when norms are rigidly enforced.
In the blogsphere the value of the dialogue is often that opposite viewpoint meet. Sometimes your viewpoint may wind up being seen as winning a swift battle but that’s hardly ever the case. More often for it to be valuable at all you have to take in the other side and then it can have many possible impacts.
Ariane Zurcher who was the one who got me to ever open up my own blog again by her own courageous demonstration over and over of mistakes made, opinions changed often managed to welcome people on her blog who are still very much at that earlier, non-accepting stage of autism. Who still want the cure. Who are blind to all but the autism and the desire for it to be gone. The process of movement from that view point to acceptance is nearly always slow.
I mentioned in a comment how part of what makes me write is based on a comment from an English teacher I had about the meaning and beauty of turning pain into words and sharing them. For me, the fullest meaning will come if I can have the kind of impact that moves some people from a position of pure blind terror, and sadness about autism to acceptance. I don’t think that can be done by toeing a firm semantic line at all times.
There are extremes expressed about autism. I find the extremes don’t ring very true for me. While my autism is not a tragedy it’s not exactly all a fantastic day at the amusement park either. I accept my autism but actual acceptance doesn’t come in not recognizing the challenges and sticking to an equally as scripted message about how much better it is to be autistic and insistence on the using the same words for that message.
My own autistic life is very hard more often than not. My autism is the best and worst thing about me. That’s my truth. Other people no doubt have a different truth. When I said at the outset one of the things that came up was noticing in the desire to be accepting some parents expressed guilt for when they cried. Don’t.
Actual acceptance to me looks like being able to say, “You know what this is very hard at times, it’s exhausting and I get worn out.” That could be said of life too but within this context being afraid to express perfectly natural things lest they be thought of anti-acceptance worries me.
If I say I cry for myself often will I be driven from the adult autistic community? Probably from the more militant parts. I write this at close to an adult all time low in my ability to function at all though. So while I know deep inside myself there will be a day when I can appreciate the gifts my autism gives me, more than worry about the needed for life capacities failing and adequate support not being there today isn’t that day.
If I say sometimes my autism scares me does that actually work against acceptance or does that free someone else up to say or to admit that it has that effect on them sometimes too? What I want at the end of the day is to be able to say sensory issues so severe combined with executive dysfunction being at an all time high mean I have lost close to half my body weight without someone thinking that makes my existence so miserable and null of meaning that not existing would be preferable. As long as I exist the potential for something meaningful to be derived from my experience exists.
On the whole I like the person I am. I have many strengths and I have needed them. While I accept my autism and am not ashamed of it, the kind of acceptance and understanding I would hope society can get to would have them look at my struggles, and not think of me as in need of a cure, or future expressions of what it is to be me as in need of prevention but to think wow as a society we could really do better here. We could provide the supports so a person like myself can pursue a healthy and meaningful life. We could choose to spend just a fraction of the funds derived from the dreaded awareness accessories not on making more videos with sad music playing to raise more funds in a never ending cycle but to say that as a society we value people with autism enough to give them the means to live the best life they can.
Right now we are doing badly enough that the conversation keeps coming back to institutional models of care. We are doing this badly because every single time we had appropriate supports in place they were removed without anything equally as appropriate replacing them. Real awareness would be as concerned for the 44 year old autistic experiencing sensory issues so severe they are often starving as for the 4 year old. Autistic people spend the majority of their lives as adults. However you spend your April try to put the notion of autism as a lifespan issue on the agenda.
I have a dog, a computer, dreams of more schooling and my access to all of those things could be in jeopardy not because the supports that would see me making forward progress again don’t exist but because the system which is a reflection of the society that creates it will default to what is easy for it. I’ve spent the majority of my adult life on the sidelines despite having abilities that could have had me as a more active partner in my society. For much of that time I would have required a very minimum of consistent support. Had that support been available when you go from being a child to an adult it’s fairly probable I would be in a position to pay for that support myself now. So, yes, it sucks to have come around in the circle for the umpteenth time to a position where the kind of care that would strip all meaning from my life is all that is on offer. I don’t think that’s good enough. I also don’t think I caused it by referring to myself as an adult with autism in my about. Societal indifference to people like me that has us forever poor and dependent is obviously not going to change over night. It wasn’t created by the occasional deviation from preferred terms and it won’t be overcome by a strident insistence on a sameness in the message we have about autism. Every person is unique. If I choose to have a larger linguistic toolbox at hand to try to make my own case about my autism that’s my choice to make.
It’s not a battle I am exactly fighting from a position of strength at the moment. At any moment the sum total of things I cannot manage for myself could take all choice away. So yes I am tired, not of my autism but of values that essentially discard me. Of an unwillingness of people to even imagine meaningful inclusion instead of token inclusion. Living with autism can be hard but is hoping that raising awareness means one day it isn’t made harder than it needs to be asking too much?
Cry when you need to, laugh when you can. Don’t let anyone limit how you frame your own reality. Change is slow. So slow the things that will help me will likely not be achieved in my lifetime. I’m in this fight largely for those who come after even if some of those who come after rise up and bite me for my choice of words.
I have to celebrate when I learn that something I said made an actual difference to someone with autism because there is little to celebrate in my own reality right now. As long as the ways I phrase things are not a barrier to making that difference I will not change it.
While I worry when I get real about my own life it probably scares the beep out of the parent readers that isn’t the intent. The intent is to show unless we can make progress that has society view autism as the lifespan issue it is this reality I am living could be some child’s future reality.
Don’t think I am devaluing myself when I say I am in this fight largely for those who come after. I say it that because what sustains me is the knowledge that my experience even at rock bottom is indeed helpful to someone. It gives me courage and vast quantities of it are needed. While some well meaning individuals will bestow courage as an attribute on those they see as “afflicted” the reality is I am always running out.
At the end of the day everyone lives the life they were dealt. If it seems like the cards are stacked high against winning since there are no re-deals in life well you find a way to go on. My way to go on is not to blame my autism even when the areas that are falling apart are all pretty autism related. It’s to point out if one were to look only at how I was functioning independent of my ever having spoken, or having made the mistake of letting them get some estimate of my intelligence – based only on where my functioning sits right now a just approach to autism, a truly awareness based approach support would be basic.
Instead I get institutional care suggested or going off to have my family look after me and blank stares if I say my family has their own life and I have had one here in this city for 27 years so I would prefer to carry on with my life, with my goals and with my dreams. However grim the basics look I know the only sustenance that helps is dreams.
When I was young and energetic and a life closer to what I hoped still seemed within grasp I had energy to spare. I still have hopes though. The life I will have is something I keep having to re-envision as some things I dreamt of move permanently out of range but as I play out the life I have I do so hoping that over times more dreams of autistics are realized. That a strength based model will replace a tragedy one and that one day there won’t be more mes not because autism has been eradicated but because autistics are supported and encouraged to have full and rich lives. Not just managed, or warehoused , or set beside the path of life. That one day continuous access to appropriate supports will be a battle won and no one ever has to sit with the choice of dying slowly or giving up their dreams. It seems a modest enough dream. Society seems to have a different opinion. Until I am no longer or that dream is realized I will try to express whatever I think needs expressing to move that forward and to serve the greater good. I don’t think that as a life choice that’s much different from any other ethical being. Because my life is very much at stake whether literally or as the kind of life worth having, I will be obstinate about any attempt to dictate the words I must use. Everyone can feel free to be just as obstinate in their own word choice. Words are power and part of the power rests in a choice. If 44 years of autistic life hasn’t earned me the right to switch things up a bit when describing my own reality well that’s a tyranny of ideology I won’t submit to. It’s possible to believe in an idea but reject the imposition of it.
In theory I believe democracy is the right choice for some countries for example. I find the notion of imposing democracy to be somewhat counter to that very ideal just as I find the imposing of a single way to describe autism to be contrary to the whole point of describing it. To my younger, autistic brethren who can feel such offence reflexively by my description of myself well that’s a debate I was part of. That’s an ideology I live not by seeking out reasons to take offense based on small deviations from the semantic cultural norm but by trying to reach out. Because meaningful change to autistic reality can only happen in partnership with the neurotypical majority that is going to mean sometimes singing to the most reluctant melodies of change in terms they can accept. That is not like I said at the outset why my about is phrased as it is but sometimes it will be a deliberate choice for that very reason.
Let’s not be so focussed on the need to manage the message that we too become a force of oppresion. The reason you hold a position can only be strengthened by challenges to it so if my errant ways in my “about” made someone more sure of why autistic is the preferred term then that’s good I think. Certainty that it is the preferred term though just expressed in the same uniform way and the same accusatory phrases as always in the absence of the kind of arguments that were needed to advance the cause do make me worry that there are those who will seek to have people toe a linguistic line without fully understanding why. I am not saying that was even the case with the person who objected here as it’s the second time this year I’ve been challenged from within the community over deviation from semnatic norms. Being autistic doesn’t make us Borg – although that would be cool in a twisted kind of way. There is room to challenge each other without undermining each other. To celebrate diversity by being diverse.
So one of these days I will get to the other things this whole experience brought up. The questions that spoke to me more. I didn’t want to tackle those things though only to be handed an infraction card for the way I write about those things.