Anyone who knows me knows that I am bit of a stickler when it comes to "inventing" words to make a point. My husband is even worse when it comes to being a bit annoyed by this.
However, this one struck me as interesting.
A friend's blog has a link to "May First: Blogging Against Disablism Day" http://blobolobolob.blogspot.com/2006/05/blogging-against-disablism-day.html
The definition and explanation behind the creation of this word can be found here: http://labracknell.blogspot.com/2006/04/badd-entry.html
The definition of the word is: "Disablism (noun): Discriminatory, opressive or abusive behaviour arising from the belief that disabled people are inferior to others."
A noble cause, to be sure, but there are already so many fine words in the English language: "Bigotry", "Ignorance", "Abuse", "Discrimination".... I could go on, but I think the point's been made.
Ah, but this word isolates it, much like "racism" or "sexism".
"Disablist" for a person who is into "Disablism"?
It doesn't really work for me, but let's leave the semantics of linguistics behind and focus on the issue being examined: Discrimination, abuse, opression, etc. against disabled people because certain individuals believe disabled folks are "sub-par", "sub-human", and "inferior". (...and more great words already existing in our language)
I don't consider myself disabled. I can walk, talk and do a lot of things most folks can do. I am neurologically different and perhaps lacking in some areas, but I challenge anyone here to find the "perfect" person.
However, just because I don't see myself as disabled, doesn't mean others don't once they hear I'm on the Autistic Spectrum.
What are they expecting? Rain Man?
Why don't I forget to wear underwear one day and then prattle on and on about it while we drive to K-Mart? Perhaps I will fit someone's description of autism that way? (Yes, I'm being sarcastic)
I've been up and down when it comes to admitting who I am in this regard. Up until I was 13, I didn't know I even was autistic. I was told by my mother that I was "sick" as a child, but I was better. (Ah the ignorance of people - I had ABA for 6 months and I was instantly cured. Sure.)
At the age of 13, I got "into" psychology as only autistic people can and started reading the university textbooks about autism. None of them described me. I was going to school, I could read, write, talk, make a few friends and all that. I wasn't wandering around, banging my head on the wall or flapping my hands. I couldn't possibly be autistic!
There started about 10 years of denial....
It went all right until a few months before my 24th birthday.
I was working two jobs, 7 days a week for over two years. Often I'd work 12 hours or more a day. This is enough to wear anyone out, of course, but I got very ill. I couldn't eat or drink for 3 months, dropped 50 pounds in a couple of weeks, and started having panic attacks.
At which point, I began to notice some other things: pacing back and forth and hand-flapping. Hand flapping? I couldn't work, socialize or anything during this time. I was fixated and fearful of leaving the house.
I called my mother who bemoaned the fact that I was becoming "autistic again". Autistic *again*?
After coming pretty close to death, I did some priority changing in my life. I quit one of my jobs, moved house twice and started in a new line of work. I started feeling better.
I also started researching autism more and joined a few mailing lists. Was it possible to be supposedly cured and then become autistic again??
I learned very quickly that, no, that is not the case. You're born autistic, you'll die autistic. That's the truth. That's the way it is.
I learned that autism is not just a childhood thing - it's with you your whole life. When you try to pretend to be normal, it catches up to you. Did it ever for me!
So...here I was was, 24 years old, recovering from this illness after being put on medication for the acid reflux which nearly burned a hole in my esophagus, having to look at my limits and learning about how to deal with being autistic for the first time in my life, despite being born autistic.
For years prior to that illness, I looked back on my life as a young adult and saw that I did have some problems:
1. I could not relax. Seriously! I remember sitting in my apartment, with my mind running wild one day and thinking "I should be doing something". I had come home from work, cleaned the catbox, made supper and was tired. So I thought "Well, maybe I should make a cup of tea, get some ginger cookies and just relax on the couch".
I got the tea, cookies and parked my butt on the couch with my feet up, all ready to relax!
I couldn't. I started to panic and freak out "I should be doing something! I can't just sit here and space out!" That led to a panic attack and I spent the next hour pacing back and forth, feeling worse and worse, until I was so tired I fell down from exhaustion.
This was a regular occurrence. Was my brain telling me I was not allowed to relax? Did I always have to be engaged with *something*? (As a kid, I was always busy with artwork, or reading or doing something)
I look at the hours and hours ABA therapists put little kids through and I wonder. I look at the parents coming onto the mailing lists saying "My kid spaces out and stims, how can I stop it?" and I wonder.
Was this my problem? Was this inability to relax "conditioned" into me when I was very small?
Looking at my medical records, there is a lot of mention of something I used to do a lot as a kid: I'd sit for about 10 minutes just staring into space, not responding...and then when someone touched me and told me to snap out of it, I'd be all freaked out for a bit. They thought it was seizures, but tests came up normal...no seizures. Then they thought it was something they had to "train" out of me.
I recognize those "episodes" throughout my life and I still do it...it's a form of spacing out and it's relaxing to me. I'll sit for a few minutes, stare ahead and just "slip" into another state of being. I'm conscious, I know what's going on, but I'm in an alpha state it seems. I'm all relaxed and not even thinking anything. I then shake my head to get out of it and life goes on.
If someone jars me out of that state, my heart rate goes up and I have this feeling like I've just been caught doing something illegal or embarrassing.
The problem is, when I do it, I cannot properly relax since I've been told all my life that this is "pathological", "wrong", "abnormal" (more words). I now have to tell myself, "No...it's ok. This is my way of relaxing. I'm 32 years old and I am an adult. I am allowed to do this...to heck with what they say." It is now more relaxing and I'll do it when I come home from work, or even during my lunch break.
I spent a lot of time after my illness in 1999 giving myself permission: permission to relax, permission to space out...permission to take care of myself first! That is a sad state when one has to consciously give oneself permission to do these simple acts of self-kindness because it has been "programmed" into one that doing these things is wrong.
I now can relax with zeal and I don't care what others think. I'll space out on the couch and fall asleep like my dad always does and no one faults me for it. My husband just lets me stay on the couch, because as soon as I get off it to try and go to bed, I'm up all night. I sleep in spurts and when I'm up, I'm up! People know not to wake me or I'm in instant "awake mode".
2. I could not fall asleep very well. Despite two jobs and being freakin' tired, I couldn't fall asleep! My mind would be racing so hard, I couldn't sleep. Some nights I'd have a panic attack while trying to fall asleep, which would lead to another fun filled hour of feeling ill, pacing back and forth and falling down from exhaustion.
This was nothing new...I was like that as a kid and then a teenager as well. I sleep when I want to. I will not sleep when I am not ready to. Unfortunately, I never seemed to be ready to!
I've got babysitters from my childhood who could tell you stories about what I was like when someone tried to tell me when to go to bed. One even has a nice set of false teeth because of an altercation we had when I was five. I had almost superhuman strength when I was angry and I knocked her teeth out. (I still feel bad about that)
At that institution, I was about 2 and they put me in a room to go to sleep. I was not tired (no surprise there) and there was this big, burly man who sat outside my door in case any of us on the floor got into any mischief. He had good ears and could hear a bug fart on the other side of the building.
What he did not hear was me methodically and very quietly dismantling every piece of furniture in the room: bed, desk, tables...everything. I took out every single screw with my small fingers and put everything into neat little piles when I was done. I was 2 and should not have been able to do that...but I did. (I mentioned a great deal of strength in my childhood...my adrenaline must have been in overdrive!) The big man didn't hear any of it.
When the big man, my mother and the doctor came in the next morning to see how I slept (since I was so quiet, you know), I was sitting on the floor and my room was in neat little piles around me. Not a single piece of furniture was left unassembled. Looking back at that, I'm quite proud of that little achievement!
Is it any wonder that I just *love* assembling build-it-yourself furniture to this very day??
Anyway...why couldn't I sleep? Most times, my body was tired, especially after a rough day at school (every day was a rough day) pretending to be normal.
My brain, however, was in constant overdrive. I couldn't even type out all the things that will race through my head in a minute...I can't type that fast and I type 70 words per minute!
How to deal with that? As a kid, strapping me to a bed was one way (which didn't happen too often since my mother actually stayed at the institution with me and would do her best to prevent them from drugging or restraining me). Unfortunately, it was not an effective way. I never learned to quiet my mind until I was about 23...same time as my illness.
I've always been interested in dreams, dream interpretation and lucid dreaming. I've been ccontrolling my dreams since I was about 6. (This is, of course, after I can actually fall asleep)
Part of remembering dreams comes from the simple act of affirming before bed "I will remember my dreams". Do it every night, over and over and it does work!
So...I took that concept and applied it to my restless mind. I told myself every night as I went to bed "I am not allowed to think or worry in in bed. My worries are safe and will be there when I get up in the morning."
I then instituted a "ritual" of saying prayers before bed. I'd light candles on my altar, light some incense and do this whole grandiose ritual thing. Within a few months, I would just have to light the candles and incense, and then park myself in front of the altar and I was in instant sleep mode. No thoughts, body tired and ready to sleep!
After prayers, I'd methodically blow out the caandles, extinguish the incense and bless myself, and then go to bed and fall asleep within minutes.
A simple little bedtime ritual and a cognitive behavioural affirmation was all I needed.
I can now just start saying the prayer in my head without all the candles and other stuff and feel myself instantly going into thast sleepy state. It's like clockwork, I start getting ready for my night prayers and that's it. Instant sleep.
However, I do still like to do the other things in honour of my religion. When I'm really bushed, I say the prayer as I lie in bed, or in a nice relaxing bubble bath (I have one of those cool, big soaker tubs in my bathroom!). I'm still honouring the Gods and I'm still getting to sleep right away.
I look back and think "If only I could have learned these two little techniques when I was a kid, I'd have probably felt better and slept better!"
3. I had really low self esteem and felt I had to be pleasing others all the time. That's actually a psychological problem nowadays. Did you know that? Folks go to counseling because of this!
Anyway, I grew up with the very loud and clear message that I was not normal, not worthy and as long as I acted like everyone else, no one would get hurt...least of all me. I spent my whole life trying to prove myself to be better than they thought, trying to be subservient and trying to be oh so helpful!
Autism, by the way means "Self-ism"...that's where the word comes from: the Greek for "self" - Auto...as in "Autonomy" (self rule), "Automatic" (selfacting - comes from automatos, another Greek word), "Autobiography" (story of self).
Naturally, we are often depicted as being very "into" ourselves, withdrawn, self absorbed...even selfish. Need I say where this is going to go?
Mission #1: Get the autistic person out of him/her self and interacting with others! A noble concept again, but at what cost?
If done incorrectly (as it so often is) , most autism treatments can spell very low self-esteem in the future.
If one thinks about it, one can see a connection:
At the age of 2+, kids are pretty receptive to the messages they get from their world and the people in it. Even if they are not speaking, the messages they receive are very clear. That's how they learn how to react and grow into their world. i.e.: Hand on hot stove causes small child to learn that hot stoves hurt and perhaps shouldn't be touched by little fingers!
A simple built in biological safety device to help little kiddies learn valuable lessons very quickly...a true wonder of human adaptation to one's environment. "Aint' nature great!"
Their reception and perception shapes a major portion of their lives - all in the first 5 years of life!
How are small children perceiving the actions being taken in the standaard therapies for autism?
They're perceiving their world in the way that they are and that might be already a problem for them. They may already be learning that the world is a painful or dangerous place due to a misfiring of their own neurons or own nervous system.
Add to that someone who's making them put in 40 hours a week of intensive behavioural modification with the emphasis on extinguishing said child's survival and coping methods to that harsh perception.
What do you get?
A child who is learning very quickly that the adult world does not care about their needs, that the world does not understand what they are going through and ultimately a world that is going to treat them like they are essentially "wrong" and must be changed.
Sound extreme? Ask the many adults who have been through this what they think. They'd likely have a similar story to tell you.
I grew up thinking I was "wrong"...something was wrong with me. What I did was wrong, my problems were not real, what I did was wrong, how I coped was wrong.
I was just wrong, wrong , wrong in all aspects of my life! Wow! What a self esteem builder that is! (sarc.)
Even in simple psychology classes, self-help books and even in my high school Career and Life Management (CALM) course; I learned about the very simple yet profound concept of "labelling".
Psychologists know what labelling is, right? For the rest who may not know what it is by this particular "label"...
In really simple English, labelling is this: "When someone calls you something long enough, you begin to believe it, and when you begin to believe it, you begin to live it, and then it can shape your whole destiny."
Now, you most likely know what I mean...you've all heard it before. "If you keep telling yourself that you're going to fail you will!" is the most common phrase I hear in this regard. You've likely been told that by your mother, a teacher or even a good friend.
Labelling is very well understood by everyone.
Autistics are not immune to labelling. Most autistics, being as sensitive to their surroundings as they are, are probably even more susceptible to falling into a negative labelling trap than most folks are.
Looking at this concept and the concept of most behaviourist programs, what labelling is happening here?
The child is repeatedly being told something - "What you are doing is wrong...do it my way, see it my way...be normal!" 40 hours a week, 8 hours a day (sometimes with only 5 minutes for lunch - if I only got 5 minutes for lunch at work, my boss would be in for a riot!), 5 days a week...etc, etc., etc.
The child "learns" not to do it his way and thus the label is slapped on: "What I am doing is wrong, therefore I am wrong...." "I am abnormal, I must be normal to fit in."
He believes it, lives it...and then what? It shapes his life. [10 points for you if that was your answer too. :)]
He will go through life, like many of us, believing he is just plain wrong, abnormal, unworthy... subhuman.
So...how does this fit in with my intial topic? Have I gone off on a completely different tangent?
I'm autistic, not ADD, so there is a logical point to this and I have not just gone off on a different topic altogether.
Again, the definition of disablism: "Disablism (noun): Discriminatory, opressive or abusive behaviour arising from the belief that disabled people are inferior to others."
"The belief that disabled people are inferior to others."
We are taught that we are inferior to others from day one. We're wierd, abnormal, socially inadept, wrong...inferior.
We must please others, we must act as they do, do as they do...even if it does not make us happy; even if that not allow us to use our own special gifts; even if that is at the expense of our quality of life!
Now, how does this fit in with me as an adult?
Well, I remember back in 2003, I was on the evening news; quite proud of how "well" I have done for myself: IT job, engagement, yadda, yadda, yadda.
My dad saw it and had a bird! "Do they know about your condition at work??" He said.
"No..." I replied.
"Well, they will now...you might lose your job over this!" He said.
"If I do, someone's getting their ass sued big time!" I replied. I had read a news story of a woman in the USA getting quite a hefty sum of money after suing her work place (and winning) after they treated her "differently"/refused her promotions when it was revealed that she had Asperger's Syndrome.
But I was worried.
To add to my worry, a news reporter from the local paper was there too and had said that my interview would be in the health and lifestyle section of the paper...I had been cool with that.
Imagine my shock when I picked up the paper a few weeks later to find my face in huge, full, brilliant colour with the label of autism...on the front page!!! Eeeek!!
Just a week before, I had been hanging around in the hardware lab with the guys and one of them mentioned autism and then pretended to be "retarded". I said nothing. He looked at me differently after that article was published.
How many other people were looking at me differently?
It was not a negative response I received, but a positive one. I got hugs, and people said how good it was that I could come out about it and show that there is a chance of success. Sheesh, I might as well have been "coming out of the closet" about an alternative lifestyle!
My boss joked about me being able to count cards in poker and I told her that I'm miserable at cards and would be a sure loss if I went and gambled. I suck at it!
What if I changed jobs?
What if someone saw my name associated with autism, since employers really love using Google to see who they're hiring?
Would that prevent me from being hired?
And if I did get hired, would I ever progress?
Would I ever go anywhere in the company?
Would I be hindered in my career path by it?
Would the label of autism be plastered to my head like a scarlet letter A? I look at the publicity autism gets and it's not positive for me.
Words like "devastating", "tragic", "hopeless", "epidemic" and then newspaper articles like "Autism is a financial burden on everyone" come out.
I've heard it said that autism is worse than cancer or even death.
I'd rather be autistic than have cancer, thanks.
Some days I wonder if it's better to be autistic or dead, though...
That's how societies and parents get money to further their cause for treatments like ABA, which already do a lot to destroy a person as it is.
Need we add this insult to injury?
Not great PR for me should it get out to future employers that I'm autistic. Not good PR at all.
It doesn't matter what I do in my life, the speeches I make, the raises I get, the houses I buy, etc.
Autism is a label that has a lot of very negative connotations to it!
I legally changed my name last year and I keep my autism stuff either with my old name or I just stay very anonymous (i.e.: no full name anywhere on this blog).
Disablism is alive and well in the autism community, folks. Alive and kicking as they'd say!
Of course, no one will ever admit it...but it's there and it's ugly. Uglier than even the abuse, discrimination and dehumanising actions against other disabled people.
People in wheelchairs get better treatment than autistic people do by society.
Blind and deaf people get better treatment than autistic people do.
Right now, autism is seen as a mental illness and it's getting the same wonderful (sarc.) attention and stigma!
I don't want to lose out on opportunities because I'm autistic. I don't want to hide in a closet forever either.
On May 1st, let's blog against Disablism...and then act against it every other day after that too!
It's one step towards a positive perspective...but oh, there is sooo much work to do!
