started opening mine mind and writing that is...
exactly what flew out...
it came upon reading danas "vent"....
and so... after reading it... the pain swelled up so from so deep... the pain for all the times AS persons are misunderstood.. and then feel pain because of that misunderstanding...
and so wrote this post to the message group where had seen some of those statements made....
they will surely kick me out of that group... oohh well if that is the price of sticking mine head out and speaking up!
hi,
generally have left mineself in the position that am trying very well to limit mine posting to this list to subject matter relating to ((in here wrote the purpose of that list))) or other issues which have seen come up here such as chelation, yeast issues etc. today am going to divert from that rule for a personal reason.
perhaps it is mine feverish mind (103 F) that is creating this diversion, perhaps it is the need which am having to try to understand why it is so difficult sometimes for autism spectrum individuals to communicate with others, or why it is so difficult sometimes for NT (neuro-typical, otherwise known as: not-autism spectrum disordered individuals) persons to communicate with AS (in this post AS is used to describe autism spectrum individuals, not the AS=aspergers syndrome) individuals....
though there is no animosity held within this heart for most people on this list, am not intending to write for most of them. am writing for those who need to hear some of the truth living within this heart.... if you are not one of those persons, and therefore are not spoken to, it is not because am intending to be rude.. you just dont concern mine mind right now... as for those of the persons who am writing to... am not intending to be rude to you either... only trying mine best to express these thoughts that have arisen.....infact, if it not were for the children... our children... the AS ones... these words would not even bother to gather the strength to write... would be too scared to say anything if it not were for the tenacity of the late autm rose, that stubbornly clings to life in a season when all flora is laid to rest. our children are these roses in autumn. children are forever blossoming. we AS persons are sometimes like miners in a shaft weighed down by the tonnage of oppressive dirt that society has heaped upon us. sometimes noone is terribly interested in removing that heap. but the children, they are not far removed from teh earth and they do not mind digging. they are new, full of life and unable to stop blooming. their parents may feel crushed but the children go on blooming like the lovely, stubborn rose. sometimes am meeting adults who reach deep inside the spirit of themselves for the strength to bloom amid the dirt heaps and those adults (like dana) inspire mine heart to reach yet further too. it is for those children, that am writing today these thoughts on this one tragedy of living AS in society. it is the children who will have to learn to claw, dig and scratch in unison if we are to get out of this deep shaft. But you all are privy to these words (or perhaps you do not view it is a privy?, but such is the intention) are so because you are stuck in the collective called humanity. the burden we (AS persons) carry is a collective one. unfortunately, it is in addition to thepersonal load that every human being carries. the statement "everything starts with the self" by itself has some truth. but it is not the whole truth. it is the basis for a persons passion, but denies compassion. in figuring out a path for the whole people, it must be borne in mind that the whole people may not choose to forsake themselves. such things as justice and principle prevent teh whole people from becoming dispassionate. the condition of the whole then becomes the standard for the few. until ALL of us are free the few who think they are, remain tainted with enslavement.
what ever it is that is happening to mine friend-dana... it is killing the sense of trust that there is sprouting within this mind/soul for the "NT" world out there....
was again with eagerness waiting to look up danas new web pages.. and upon this page did find mineself:
http://www.autismchannel.net/dana/social.htm
there found mineself reading, and crying, and reading some more... not only crying for what has happened to dana, and other AS children and adults, but also having flashbacks of all the tears have shed,all the beatings, teasings, the pushes down stairs, the spit upon mine face-and blood upon mine body have had to wipe away .. why?.. because of just these types of things... what types of things?... is it misunderstandings? is it bigotry? is it lack of acceptance? mine mind cannot understand
when people send her statements such as:
****** >>I do have problems with people on this and other lists who use their disorder as a crutch for sending out disrespectful comments and remarks. Like it is o.k. to mask ignorance and rudeness with something like Autism or PDD .... shame on all of that!
>>Who gives you the right to pair these character flaws with a disorder that is so debilitating? ****
obviously could go on and remark on the fact that people with AS are not necessarily using their AS as a crutch but sometimes point out their "blindness" to certain things *such as social skills*,
communication etc. as a way to try to help the "other" see that we are not TRYING to be rude, or insensitive etc. if we seem to be so... it is like a blind person who steps on your toes saying they didnt see you there because they are blind, so that you do not think they did it on purpose.... now unless the other was also blind, it may be quite easy to "see" that the blind person was blind.. but it is not so easy to see the AS.. especially through the internet.... so will only comment on something here and had a hard time figuring out exactly what woudl report on.. but decided on the rudeness part...because it rings in the ears often....
ok, have SO often been told that am rude, like the time the neighbour (we had never ever had visit us, never visited her house, or didnt even know her name!)walked right (without even knocking on the door) in our house with her children, in the middle of daughters private birthday celebration and i=mineself just sat there continued to watch the video (after only saying "hi", is that not what you say to people when you see them?, but what else is one supposed to say in a situation like that?) daughter had picked out to watch for her birthday.. later was angrily berated for being so "rude" and an "embarrassment" by mine ex-partner (who is a social worker, who upon the break up of our relationship said that i=mineself and the children amounted to "too much autism in one house")... that is just 1 example of where am told am "rude", "thoughtless" or "immature" (just to name a few of the 'labels' placed upon mineself).... then, upon reading about autism spectrum disorders... have read that the "professionals" who have 'created' the diagnostic criteria for these disorders seem to say the same thing.. that autism spectrum individuals seem to sometimes be viewed as rude, etc. ... so perhaps these words to that person writing to dana... it is not dana who links those characteristics to being as... it seems to be everyone else who is labelling us to be AS...(((also am wanting to say here that after knowing dana for over a year have read her responses to people online, have read her letters to mineself via email, and have never viewed her as rude or inflamatory) this leads this mind to think about social skills...... do NT people think that AS children will someday, somehow (short of experiencing a complete recovery.. and let us ALL send out wishes for such recovery for each as child) become adults who will NOT have social skills problems? if these children have difficulty with relating to peers now, will they not have difficulty in relating to peers at 20, 30, 40, 50, 60 yrs of age?
*****You know, it's a two way street in this society Dana, so people at distinct functioning levels like yourself , [name], and [name] should not be given special privileges because you are on the spectrum ... that would be so very wrong. We have to be very careful of the example we are setting. ******
wonder if this person has autism spectrum children?
IF SO... does this person want "special priviledges" for their child?
do the parents of AS children here want "special" IEP's for their child? do we (parents of Autism spectrum kids) not want the police dept. to be educated about AS characteristics so that our children do not get shot to death because they do not "respond" to commands, of "dont move", "put your hands up" etc. in the manner which the police consider appropriate? do we not want our children to attend "sheltered" work environments (where we feel appropriate), is that not a "special priviledge"? do we not want supported indipendent living *(where we feel appropriate) situations for our As children when they leave home (or we are unable to care for them), and is that not a "special priviledge"? wouldn't it be VERY WRONG to NOT seek these "special priviledges" for our spectrum kids...soon to be adults (yes, many spectrum kids DO become spectrum adults... and on this message board, along with other autism related boards there is a chance for people to interact with AS adults... welcome to YOUR future is all that comes to mind.... call i=minemind inflamatory if it pleases you [[incase it was missed, THAT was mine attempt at being sarcastic, did me do well with that?] this is mine statement to the world out there that is so so often the source of so much pain for us AS individuals who are HURT so horribly for what? because of our disability.... disabled persons "rights" movement is not as old as the civil rights movement, or womens rights movement.... but surely we too must find a way to dislodge "ableism" out of the crevices of society as the other "isms" (racism etc.) are being brought forward movement in exposing, and dealing with )...
is it like this .... "specil priviledges" for "special" people... and if there is "special" people, then who are the non-special?... are they "ordinary"?....
clearly, "ordinary" person is a metaphor for something. none of us is ordinary, or put differently all of us (us being all persons in this statement) are special in some way or another.so what does it mean for people to defer to the voice of the mythic ordinary person? one of mine obsessions is reading... philosophy.. especiall michel foucault... a central theme in his work is the idea that how cultures define the "normal" or "ordinary" as opposed to the "deviant" or "special" both gives people their social and personal identity and acts as an instrument of political domination and bureacratic administration. ((if anyone has interest to read about this, please read michel foucault "Madness and Civilization: A History of Insanity in the Age of Reason (1973) )
what is distinct functioning levels? is it meant by those words that because a person is able to write well, reseach well, think logically well, calculate well, or whatever different skills we (autism spectrum persons) have which are our strengths that we then should be just as strong in other areas as well? because we actually are not. and who is? AS or NT.... personally, am quite proficient with the written expression, or so have been told, really am not able to gauge that mineself, but unfortunately none of you have been able to listen to mine mouth trying to speak... the words do not flow out as they do from the ends of mine fingers...you would not believe it is teh same person... that is what others who have heard mineself speak.... does mine 'inability' to speak well take away mine ability to write well? or does mine ability to write well automatically leave mineself in the position that it is expected of we to speak well too? ....and am having such a hard time understanding that above statement about functioning levels.........
surely mine kids have "high" functioning levels.... but that was not told to the little kids mother at the birthday party... a cold, gray dawn promised rain on the birthday of the sons friend. by afternoon, the clouds had been dumping their excess in earnest. decked out in bright yellow, rubber rain gear and armed with a present we could ill-afford, the pari of them trudged off braving the elements to join the party. ah, the pain on their faces and the silence on their return-the urgency they may have sensed in mine voice when asked them why they were not at the party. mine chubby little moon-faced son clutched a leagured package whose wrappings the rain had destroyed. it was a long time before this elder brother threw himself onto the sofa and wailed, "the lady told us they didn't want no rude wierd kids wrecking their party and why dont you just go home"... his thin little body sobbed to the rhythm of the rain. the younger was too shocked into silence to cry. mine mind soul could not cry, not then, and the mind dare not be angry. for am not going to teach mine babies to hate or bow to the cruelty of oppression.
finally, if am getting kicked off this list because have made such statements then so be it.
that is the risk am taking, for expressing the awesome pain there is within, the sadness which swells up like a mightly tide, and lays deeply heavy rocks of remembering, of re-examining, and identifying not ONLY with dana (for the pain within is NOT dana's fault, she did not bring it within) but with all AS individuals who experience the pain, the confusion, the frustration, that comes with living out our lives in a world where many contacts we have with people leave us (both, them and us) in a state of non-clear communication..... the tears that have been washing over mine soul, flowing out to cloud mine eyes, but not mine vision.... will wash away the pain too eventually.....that day that am able tono longer weep for mineself, or others hurt, but rather insist on writing mineself into a new book that counts all of humanity on its tender, warm, and colourful pages.
well that was it....
will all those with flames please step up to the flaming gallery now... (but that part didnt put in it, too bad didnt think of it then)
lg
