When you were young...

Recognize this original "Rosa Parks of the Disabled Set" ?

EDIT - Terrific.. (sarcasm)
a long-time friend who's known me on-line and met me long ago off-line as well who I'd never guessed to have a problem with this, amazingly has just asked me who that is a picture of, he thought it was Yoko Ono. He's given me permission to say who he is. Its CharlesR. He's becoming pretty visually impaired himself these days due to age, diabetes and his own vitreous hemorrhages (which quite frankly, are a bitch. I will have to go to U of M for mine which is non diabetic in nature and would be healing, save for my Ehler's Danlos preventing it as well as making me a huge general anesthesia/operation risk).

To me that's a huge compliment to be confused with Yoko and we are the same height, however, dimsighted or not, if even he couldn't tell who that was maybe I'd better clarify:

That's not Yoko Ono.

That's me in 1994 still at the halfway house group-home still getting ready to attend the university which I hadn't yet, and thinking I was 'Rosa Parks of The Disabled Set' (a phrase I used a short while later online in autism chats once I accessed them from the university's internet system) and yes I was dressed like John Lennon at his Madison Square Garden concert (sort've) the idea of being able on the same plane as, being the same or equal or to be like others was a real new one to me and I was working all of this out and so of course I decided naturally to be try to like John Lennon and so I was (or thought I was). I even gave a verbal speech at the DRC at right around that time that went:

"We are in your schools, we are in your jobs, we are in your universities and we are in your world because its our world too. Thank you very much"

I doubt anybody understood a word I said (looking back on it), but at the time I thought they had, and I had glared around the room as I said it, as if I was saying the most profound daring liberating equality invoking meaningful civil rights activist advocacy thing in the world. I was going to change the world too, or so I thought.

as the saying goes:
That was then, this is now.

Mary Dee Yung and "Why weren't you scared of me?"

I was about 15 and there was this girl at the children's home named Mary Dee Yung (that's not her actually name but its awfully close and I often and especially then think of people wit their full names, all three or more of them if I know them).

Mary Dee Yung was a girl also about 15, a Black girl with big bushy eyebrows and very very stark eyes with eyelids that made them more that way, like black dots for eyes and these folded creased eyelids. Mary Dee was crazy. Officially.
She was schizophrenic, of the paranoid sort and very very violent and very capable of being very violent when she was.

Something I should explain about the children's home if I can here is that for many people including myself this was the last stop, last hope before being deposited warehoused and sentenced to a life in Hell in a place called Northern Indiana State Home (that's not its name either but its awfully darned close. That place is closed and no longer exists now).
I have come to understand that its my father's doing that kept me from being placed directly into NISH, he knew a court order was coming that I would be taken from our family and placed somewhere and barring being able to pre3nt that, was able to negotiate my being placed at this children's home instead. This is one of those life changing crossroads in life, for which I owe my father much. I don't know the particulars, but I know the children's home (which had only been converted from a proper orphanage 1.5 years before my arrival) had yet to see a kid anything like me. I was definitely their first autistic and their only autistic during my stay there.

At the dreaded NISH the children's home (with its claimed 85% success rate) sought to keep us from, people with every sort of problem, mental or severely developmentally disabled could end up in segregated wards depending on their disabilities at NISH as it was called for short, and everyone at the children's home feared it, even I understood enough to know this and to fear the NISH.
The other girls murmured about it amongst themselves, spoke extra softly of it when they did.

in my entire teenage life I lived at the children's home only 2 people ultimately actually make their way to NISH. You had to be really bad off.. really really REALLY bad off to be one of those two girls to fail at the children's home and wind up at NISH. Mary Dee was one of those two girls.

Before her I had seen a very few Black people, and the ones I had seen weter either severely DD or teachers at the school I had gone to when I still lived at home in the city several hours north of where the children's home was.

Mary Dee was intensely Black in skin color and had these very piercing eyes and crazy behavior, and for some reason people do tend to think Black people can fight better than white and are a bit more scared based on Blackness (this has been my personal experience and I have felt it myself, seen others respond to it, and I have no explanation for it, just that it is).

I was undersized, the smallest person on our unit and the only one living there with my particular set of disabilities (autism, non verbal, my particular set of behavioral and mental handicaps etc) when Mary arrived. I will never forget how she arrived.. screaming and kicking and being dragged, I watched from our unit's solarium as this flailing dot among many was deposited in the 'DC Unit" (lockdown, diagnostic unit. Most didn't stay there long at all. I had been there at an all time record of 9 months before finally making my way to the unit I was on. there were only 4 units total. one for boys, the DC/startup/lock-down unit where you were never left alone not even for a minute, the girl's unit downstairs from where I was, and our upstairs girls unit).

It wasn't too long after that that Mary Dee appeared on our unit and managed to decide I was beholding magical powers,just me, nobody else. I could see through walls and so forth according to Mary Dee Yung and I was using this power to peep at her.. I guess.. I was never clear on this.. but she decided this means war and it took the entire of 12 girls plus staff (house paarents) to keep her from getting her hands on me and ripping me apart, and she could have, I'm going to be honest. I've seen a few things in my life, and Mary Dee Yung was not one I'd want to tangle with even today, either in her teenage form or whatever adult form she may have today, if she's still alive.

Anyway, she would go down the hall glowering and scowling and posturing whenever she saw me.. there was the incident in the cafeteria where she was seated across from me and announced something that started out incoherent/inaudible but ended in ".. wash yer FACE!" and chucking an open milk carton at me which I responded to by mimicking (what I do in an argument or heated issue I tend to parrot back what I think I'm seeing or hearing for lack of better way to respond) and chucked my milk carton at her.. failing to open mine first (later another girl named Kathy who wa at the next table with her back to us would say she wondered about that flying closed milk carton whizzing by her elbow, what that was all about) and it took about 1.5 nano seconds for that answer to come:
Mary Dee reached across the table grabbing me by the shirt and I attempted to poke at her with a fork and the staff broke us apart, but not before the table was collapsed food was all over the place, and they were dragging Mary Dee away while I was just standing there.

Just standing there.. one staff's hand on my arm and shoulder. I have to always stop and think about how I was not dragged away.. there were a couple of instances where there were altercations and the other got dragged away but I just stood there and I wonder at those...

As I started to say, Mary Dee would be menacing at me going down the hall whenever we had to pass one another and I remember a girl who was a friend of Mary Dee's really working hard to keep Mary Dee out of trouble (and off of me), and I would just look, kind of like riding a roller coaster, you're scared but you keep your eyes open, or you keep your eyes open BECAUSE you are scared, and yes Mary Dee scared the hell out of me.

Thats why I will always find it amazing and confusing whenever I think back on the day Mary Dee left the children's home..

She was in the hallway by the laundry bin, alone, and I had rare occasion to be alone and entering the unit and saw her there and instinctively tensed.. this was bad, very bad.. to be alone one on one with Mary (who could not be trusted to take a shower or use the bathroom at the same time they had me in there even with staff around, this girl could fight, really *really* fight like few can), but she sat there at the end of the hall by the laundry thing and looked up at me as I was having to walk towards her to get past to where I was going (my dorm) when she looked up at me and said right to me and at once in her tone i could hear it, her acknowledging that people were just scared of her, but this incredible question came

"why weren't you scared of me?"

Even if I'd had speech I don't know if I'd have been able to respond.. I know what feelings I had and the words to pair off with them I know now would have been:

"what on earth ever made you think I wasn't?"

Mary Dee Yung left that day, never to be seen again because unbeknown to me she had already knocked one of our male houseparent's teeth right out of his mouth.. like a dental procedure she literally just knocked his teeth right out, lots of them and when I saw her was after the fact of this, she was waiting for her departure to NISH. Apparently she knew she was going.

Some Trivia about me:

I've been using the computer since 1994 shortly after I started to type. I've been online ever since I got on IRC from the Macintosh that was in the 'resource center' (did you know the gifted people have these too? I never would have known) at the Honors college at the university I attended. People like Jypsy and Dean Walker, Thomas McKean, others may remember me as I logged on, went to autism related chats and talked about "my beloved university' which is what I referrred to it as (I was very very fixated on the university I attended and being a student there, etc).

I've only ever read two books about autism: One and a fraction of one actually:
The Tony Attwood book about Asperger's, which I read in reverse, last chapter first, etc on the way home from a doctors appointment in 45 minutes, and one chapter of Donna William's Nobody Nowhere (got too emotional and put it down, reminded me exactly of the bipolar thing, brought all those feelings back and after I got done being all curled up and upset, I had that book taken back to the library.)
I have a couple of magazines in my bookshelf that have articles about autism.
I'm not especially amazed or interested in autism I just live it I don't need to study it too.

The second 'trivia' that it might possibly surprise people to know are the two characters, one fiction, one not, that I wouldn't mind and didn't mind comparisons being made to of me, and neither of them are autistic (that, I think, is just happenstance):

Fictional character I can relate to:
CHarley" of the book "Flowers for Algernon" buddy can I ever relate to him, so much so that when they put my first computer in my apartment I was pacing around feeling all weird about this New Thing and "and wuuut are YOUUU don't HERE?!" at it just like Charley and the mouse when they plopped it in HIS room.
I named my first computer Algernon due to this (it was also white and 'smarter'n me')

Real person I am actually honored on the occasionsl I've been compared to him:

Rudy.

That's the guy who was 'learning disabled' who wanted nothing more than to play on the Notre Dame football team (which requires one to ATTEND and be a STUUDENT at Notre Dame).. there's a lot of reasons, alot of ways why that story really 'hits home' and Rudy and where Rudy and I 'come from the same place' in more ways than one.

When I got the big idea to attend 'my beloved university' and was driven to it (no its not Notre Dame), that's especially when the Rudy references came about, especially from 'back home.'


More trivia: (I am also going to start trying to capture some of this stuff on my own website in the hopes that a potential biographer type will see and want to help if I have enough there):

I still have t-shirts and hats and backpack/bookbag with the initials and name of my beloved university stamped all over them, and I have quite a few t-shirts with The Beatles on them.
I have a baseball cap my father got me one year for my birthday that says "The 6th Beatle."
My favorite jacket (and pretty much my ONLY jacket) is for Spring and Fall and anytime a jacket can be worn (anytime I go out of my apartment that isn't a freezing or melting time) has one of John Lennon's famous lithograph drawings of himself embroidered on the back, his signature and other Lennon-esque markings on the pockets, front etc...

But I don't own any clothing with the word 'autism' stamped on it, not even anything like it, nothing autism/disability related at all, not one piece. I don't own any clothing with any reference to disability whatsoever.

I've thought very hard about trying to get a shirt that says "I'm huge in Japan" because a t-shirt saying that would be hilarious for me to wear or I could have one made that even says "I'm average in Japan" for the same reasons and it might be really funny (because I am 5'0" which is is really short for a woman in the USA but isn't for Japan).
Most of my close are used handmedown types picked off the givaway table for me by my home help providers, partially because I can't tell what would fit me and things like that but they can.


I keep thinking I must have already typed this on my blogs somewhere but can't find it so I will type it here:

Famous short women who are/wwere as short as me (5'0"):
All the following are 5'0" to my understanding, 60 inches, the exact same height i am (If I find this information listed elsewhere in my writngs I might remove one of them):

Yoko Ono
Cyndi Lauper
Janis Joplin
Dolly Parton

Partial Timeline

1964 - The Beatles blare from every corner of the earth. A midwestern woman already quite unhappy with her life drinks but not excessively drinks a lot of coffee with saccharin, and is a heavy smoker. She has a husband who does things like vanishing without warning, making drunken collect calls from several states away to tell her that he is leaving . already having two young children who are 3 and 4 for most of the year, she is pregnant with her 3rd, this one her husband had badgered her into bearing..

Late 1964 -- I am birthed by a small town family doctor in a hospital in a nearby larger city. I am what is called a 'blue baby' and I barely pass the 1964 APGAR standard. have birth defects, growths on my face and ears, deformed eyes, extremely spastic and jerky movements for a newborn, which my doctor informs my mother and that he predicts I will be moderately to severely retarded. I am also very undersized and I will remain notably smaller than my same aged peers at any age for the rest of my life. I am allowed to go home with my mother in a couple of days (which is standard length of time and management of baby care for the times). One of the characteristics noted by the doctor at that time was the way I went rigid when touched/held (as part of that spasticity 'too jerky of moments for an infant'). Arrangement is made for corrective surgeries, removal of odd growths, eye surgeries. My grandmothers both fretted, my mother eyed me and my father with mocking contempt, my father defended and denied, all around the topic of "there's something wrong with this child."

1965 - I am one year's old, already obviously behind in milestones, I continue to have eye surgeries. I am visually impaired and undergoing a series of eye surgeries and eye contact isn't expected. I lay about like a fish and ruminate my food, except when picked up and held at which time I go entirely rigid and then arch my back and push away. My mother interprets this as my rejecting her, my parents argue deeply over this sort of topic, often into the night ("the child cannot reject the mother its you rejecting her' etc). My brother and sister become accustomed to these verbal screaming matches. I very nearly die of pneumonia this year.

1965-66. to 16 - 18 months I have not crawled or made any attempt to transport myself anywhere, no attempts at speech my skills consist of being able to sit up by myself. I have made no babble, I stim a lot by rocking my body, shaking my hands and shaking head so hard I frequently throw myself over. I get on all fours 'tigering' style in my crib to ram my head repeatedly into the headboard and sides of my crib. I scream a lot. My parents are told I am not only a blind retarded baby but I'm also a colicky baby. The only thing that sooths me from my constant waking hours of screaming are two things a musical sort of xylophone toy I will sometimes play with endlessly over and lining and working the parts to make the same sounds over and over, and a transistor radio, this is taken with me to the many hospital stays for surgeries. My father vividly recalls the day this transistor radio fell out of the crib at the hospital and broke.

1966 Somewhere at 16 to 18 months the patches are removed from my eyes for good and it becomes apparent that there's more going on here than blindisms and mental retardation. I can physically see but I still seem blind. I don't lose the blindisms, I still don't crawl, my mother begins to believe I will never crawl let alone walk until at 18 months I abruptly pull myself up on furniture to toddle unsteadily but freely across the room to clap onto the edge of the table and peer over at my sister's toy turntable to scream at it until its figured out what I wanted there (my sister's Beatles 45 records to be played).

1966-67 18 - 24 months the family doctor suspects I may have a thing called "Kanner's Syndrome" and I might be 'autistic' and tells my parents so. . I am taken to specialists in the nearby larger city for testing and this is confirmed. My father looks for books on this in the library and finds very little.
I begin to wallow on the local newspaper teaching myself word shape recognition unawares to anyone.

1967 Dr Bettleheim comes out with a theory that autism is caused by poor mothering. My father discovers this and mother just happens to actually fit the image and a new tool to be used against her by my father is entered into my parents’ ongoing battle which serves to escalate that situation. Due to this, Bettleheim theories would live long in our house long after they had died out anywhere else. Aunts and uncles begin asking my parents that they'll take the older two but not me on gatherings and overnights etc. My mother cringes feeling accused, my father, in denial and desperately believing I'd be just find if my mother were any sort of mother and if the whole world would just leave me alone, rages feeling defensively at this on my behalf. It is under these conditions that my father's zeal to defend prove and 'make me like the others' and as I am walking and the typical age when this is done to children at that time, my father starts to attempt toilet training me.

1967 - 1971 My father becomes the stay-at-home parent to watch me between his college work and sometimes factory tool and dye work while my mother sustains steady work as a secretary for first one place then another. My grandfather sometimes fills the gaps when my father must be away but he works his schedule to be my primary caregiver as much as is possible. I expand from reading the newspaper to tearing up his college books as well as occasional books left about by family members. This book destruction frustrates my family greatly, who don't realize I am doing anything more than mimicking behaviors. . Though I can't speak and I'm not potty trained and I'm thought to be retarded by the age of 7 I have read some fairly lofty texts, including Mein Kampf, the Communist Manifesto, various works by Nietzsche. My father watches Sesame Street with me and I enjoy the quality time with him. I am 11 years old before I make the connection of the colorful shapes the muppets hold up and sing about to what I've been doing and that there is an alphabet, these separate individual pieces to the patterns.

1969-1970 Its been assumed by now that I will never be able to speak. I am 4 years old and sitting in a highchair in the back of the livingroom when after one of my brothers favorite obsessions in the form of a weekly tv show is coming to a close, I once imitate the offkey musical repeating sounds that I also hear at show's end, startling my entire family with my first word. Quite clearly I speak my first word -- "batman." My family's reaction and general upset and chaos attention and coaxing that results from this scared me. I wasn’t able to give a repeat performance and spoke no more words until a year later when I would not only do it again actually string two words together to say (between bites of spaghetti at the dinner table) on my father's walking through the door that "Dad's home." Excited upset from my family follows this event as well. Throughout my childhood and beyond words will continue to be very rare events which are virtually non existent. I'm considered "functionally non verbal' and later in life the lack of coordination and preplanning required to form words will be called 'dysphasia' and then 'aphasia.'

1970-1971 My father attempts to place me in a regular kindergarten at the same school my older brother and sister attend. He is called before the half day is over and told I can't be taught there, I will need to go to a special school, they don't take children like me at this school. Later that day the busdriver calls and says he will never have me on his bus again either. I had thought I had fun and a good time when I was there and I recall being extremely upset when I learned I would not be going back. I had thought I had been roughhousing on the bus and in the school with other children being playful and having a good time, the school however felt I had been fighting and the worst of it was my kicking at the teacher shins. I become quite upset when I begin to realize that I won't be getting on the big yellow schoolbus and going there again. I throw a massive fit every morning when I watch my brother and sister get on that bus and I can't go until my father finally locates a nursery school designed for younger children than I am that will take me. It is a catholic nursery school run by odd nuns who crack each child's hands with a ruler at the start of every morning. My classmates are mostly 3 and 4 and I am 5, soon to be 6. I don't deal well here and end up being picked on by the younger children, my behavior at home deteriorates. The day I come home with my security blanket torn to shreds, the silk having been carefully ripped off by the nun is the last day my father sends me there.

1971 -1972 my behaviors get worse. My mother cannot control me at all and arguments between my parents escalate yet again my father hears of a method of treatment called Lovaas. This promised to remove my bad behaviors plus teach me to talk and toilet train me. They used what are called negative reinforcements and it was very brutal and cruel screaming in my face and ears grabbing and shaking me shocking and slapping me. I was not allowed to eat or drink or have anything I liked to have or do and I could not do the things they wanted and I gave up and withdrew and became very afraid and stopped doing anything at all and my father made them stop.


1975- 76 (11 years old)
Notes/keywords:
weird allergic reaction, puberty, cracking head on ice, 'convulsion' gran mal seizures, wildchild hellcat, climbing the tv areal, parents separated, Bill Sherwood's farm 'sherwood's forrest' me in the woods, hunters, climbing the windmill, dad's drinking, the pig farmer, first fosterhomes