Becoming a Self-Advocate

April 24, 2010 in General Disability, Neurodiversity | 16 comments

I’m starting to suspect that because I exercise my freedom of speech and spoke the truth that I am now permanently “banned” from groups and organizations that are members of other certain groups and organizations.

I have applied for both membership at NYLN and to register for an event and yet I have heard absolutely nothing back.  There must be someone at NYLN (or more than one) who is blocking me from participating because I questioned one of the sacred cows of “Neurodiversity.”

Being “banned” from other organizations, blogs and whatnot has only encouraged me to become a “self-advocate” eve more.

It is time to start being “positive” and “inspirational.”

After all, I not only have to fight prejudice from society at large I have to fight it from within my own community, among my own so-called “people.”

“How They Hate Us” indeed.  I wonder, for once, if Ari Ne’eman is going to practice what he preaches.

How does “Neurodiversity” feel about itself “banning” a real autistic person, with an autism diagnosis, who was institutionalized and abused for years, who suffers severe psychological/emotional problems as a result, who is unable to do much of what these other less disabled “self-advocates” can, who suffers from severe, chronic and as yet unexplained muscle pain, weakness, fatigue and etc.

For once, is “Neurodiversity” going to do what is right or what it preaches?

Since it seems pretty obvious to me that no one in “Neurodiversity” is going to correct their highly unethical behavior and admit their mistakes it looks like I am going to have to since no one else will.

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My Job: Part I

April 23, 2010 in Myself, Neurodiversity | 4 comments

Yes, I have a “job” now.

I definitely have some things I need to write about it and which other people with ASDs, especially those who are currently unemployed, should find interesting or perhaps even helpful.  I will be writing more posts about my “job” and people with ASDs getting “paid” to do work in general.  I have some ideas about how to get “paid” for things that you can do…but you’ll just have to wait…

Currently, I earn my main income by working in a kitchen.  It is typically just me and the woman I work for in the kitchen, making jelly, jams and preserves, chopping up foods, etc.

It is a simple, repetitive job.  It is quiet and has virtually no social interaction (hence why I can do it).

But I still get overwhelmed and tired.

My job is really only part-time and I am pretty sure this is all I will ever be able to work.

Having autism I know I get tired and overwhelmed much more easily than someone without autism.  I NEED my rest, my time to “recharge,” much, much more than a person without autism.

It doesn’t take long for me to become not only mentally exhausted but physically as well.  Physically, I can feel it in my body:  the tiredness, the lethargy, the aches, the pains, that I can feel my body tingle, that I swear I can feel my bones ache… For me it is not merely a “mental” problem but a physical one as well.  At first I thought it was merely a “mental” problem, that if I just “pushed” myself I would be okay.  But I CAN’T “push” myself:  I cannot take it either mentally or physically.  I think if I didn’t have these physical problems that I would be much better off mentally because I know that my physical problems have absolutely nothing to do with my mind state.

It’s REALLY annoying when you WANT to work, when you WANT to “push” yourself but you physically CAN’T because you will collapse.

I bought some cream to rub onto all of my sore muscles that is supposed to relive pain and I also take pain revilers.  But none of this truly helps:  I am STILL in pain, still fatigued, still unable to truly work.  These things help a little:  I would be unable to do anything without them but they definitely don’t help enough.

Sometimes I wonder if I have some sort of underlying physical problem that causes all of these physical problems that I have.  Since I have started work I keep telling myself that I NEED to go to the doctor but I have yet to go.

Does anyone have any idea about what could be causing my physical problems?  Is it merely due to my extreme sensitivity because I have autism or could I possible have some sort of physical problem?

Anyone know anything?

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Neurodiversity: How Can You Live with Yourself?

April 22, 2010 in Neurodiversity | 1 comment

Neurodiversity,

How can you live with yourself?  How can you live with yourself knowing that you support liars, lies and frauds?  I know that everyone in “Neurodiversity” knows the difference between right and wrong and yet they choose to do it anyway.

Why isn’t “Neurodiversity” more interested in actual autistic people who are who and what they say they are instead of continuing to support obvious liars and frauds?  Why, for once, can’t “Neurodiversity” do the right thing?  Do they not realize that there are many autistic and “neurologically” different people who could truly benefit from their cause but who refuse to join because of their extremely unethical behavior?  Why are they willing to have a few frauds and liars rather than many real autistic people?  Are they ashamed?  Terrified of embarrassment?

Why are high-functioning people stating that they are not that much different from low-functioning people?  They know that it is a lie but they do it anyway, do it as an attempt to blur the distinction between themselves and the profoundly disabled so that the topic of “cure” and the fact that it isn’t society’s fault that they are profoundly disabled and often lead miserable lives is never brought up.  Perhaps they feel guilty about this, guilty that they don’t want a cure since they are high-functioning and “proud” of their uniqueness but realize that there are those with autism that are profoundly disabled and truly do suffer.

No one will take “Neurodiversity” seriously until they take themselves seriously.

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Second Day in Studio (A Day Late)

April 21, 2010 in Art, Myself | 4 comments

16inx20in / Acrylic on Canvas

The result of day 2 in studio; sorry for bad picture:  one day I will take good pictures.

Another Georgia O’Keeffe flower; going to do a bit more work in the center.

First Day in Studio

April 19, 2010 in Art, Myself | 1 comment

16inx20in / Acrylic on Canvas

Better Picture?

My first day in my first studio.  Today I spent seven hours on this Red Rose done Georgia O’ Keeffe style.  After seven hours my neck and back couldn’t take it anymore so I had to quit.  I think tomorrow I am going to add some water droplets.  Or maybe not.  I haven’t decided yet.

I wish I could get better pictures of it, though.

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I Started a Book Club

April 17, 2010 in Uncategorized | 3 comments

I started a book club.  It is called “The Lowcountry Unpretentious Book Club.”  I used Meetup.com to create the group.  I’ve joined other groups through Meetup.com but have only met with one in person.  The one time I met was successful so I know that these groups are real.

I don’t know if my book club will get any members because it is both intellectual and eccentric.

I wrote this about the group:

“Do you love to read? Are you tired of book clubs where you read romance novels, thrillers, fantasy novels and other genres which don’t truly interest you? Are you looking for another book club to join to widen your reading? Are you more interested in discussing the assigned book and its deeper meanings rather than Aunt May’s newly knitted oven mitt?

Then “The Lowcountry Unpretentious Book Club” may be for you.

Here at TLUBC we like to read books with depth, with meaning beyond whom truly had an affair with whom and we gain satisfaction from discussing the deeper meanings hidden in the work.

We read both fiction and non-fiction, with topics ranging from contemporary American poetry, to philosophy, to science, to modern fiction, to politics, to psychology, to religion, to anthropology, to art, to drama and anything that we would deem a good read: no topic is off limits to TLUBC.

Anyone who believes that they would benefit from TLUBC and who believes that TLUBC can benefit them is welcome to join. There are no age restrictions and anyone who is able to get to a meeting and who has read the book is able to attend.

TLUBC is run completely by its members: we will get to choose the books we read, when we meet and all other aspects pertaining to the group. At the end of each meeting everyone will make a suggestion of a book: no romance, thrillers, fantasy, Stephen King-like works and other genres that are read more for pleasure than for thinking will be allowed. The suggestions will then be placed into a bowl and the designated person will pick the book. If you have already read the book than you are in luck because you can spend the time until our next meeting devouring something else.

TLUBC will always be open to questions, comments and criticism from its members. We want TLUBC to be an enjoyable experience for all of its members and every member will strive to make this happen.

The main purpose of TLUBC is to read more difficult works, works that get the gears in our brains truly turning, to exercise our minds and to be allowed to explore deep and controversial topics we may not be allowed to explore elsewhere.”

If anyone lives in the Lowcountry area (Charleston, Summerville, Mt. Pleasant, etc.) and wants to join TLUBC than simply go to Meetup.com, type in “Book Club” in the search bar, 29403 in the zip code bar and find “The Lowcountry Unpretentious Book Club.”

I’m curious to see how many members I will get in time for the first Meet Up on May 30.  I may very well have zero; I may have seven.  Only time will tell.

College: Alternatives

April 15, 2010 in Myself

I really think college is a terrible idea for me, especially at this point in my life.  I don’t care how “intelligent” everyone thinks I am (I can’t judge myself due to crippling low self-esteem):  college isn’t right for everyone, even the “very gifted.”  How is it that I was never considered to be “gifted” in school, even considered to be learning disabled, but suddenly people think I’m “brilliant” now?  I haven’t changed at all.

My first major problem is that I would have to sit through classes that would bore me out of my mind:  introductory literature, philosophy, psychology, etc.  I can’t just show up for tests:  you have to show up to a certain number of classes in order to pass the class.  I don’t think I would be able to take it.

Second, financial issues, which have already been discussed plenty of times before.

Third, the anarchist in me just says NO!  Not a very good reason but I keep thinking, “I have a 7th grade education and I’m still more intelligent than 99.99…% of the population.”  Part of me wants to prove the uselessness of spending $20,000+ for things that one can learn for free.  I think some people want me to go to just “prove” that I can.  But, luckily for me, I don’t really care if people think I’m unintelligent or not.  I know a lot (a lot…) of stupid people (and they really are stupid) that have a college degree, even more than one, so I’m not quite sure what it proves.  Every year the standards for earning degrees get lower and lower so they really don’t mean (or “prove”) much of anything anymore.

Fourth, there are plenty of alternative ways for me to get into the fields I want without earning a college degree.  My psychiatrist hooked me up with a professional artist who is giving me half of her studio space and who is going to try to get my work into galleries.  She is also going to let me come with her to all the places where she sells her art so that I can sell my own.  She also lets me work in her kitchen to earn a little money and the job is great for me because it involves pretty much no interaction with other people.

I need to join the artist’s guilds, the poetry society, find writing groups and etc.  There are plenty of (free or mostly free) community opportunities for the arts and humanities:  there really is no need to be stuck in a classroom and pay a hefty fee to learn any of it.

I’m just going to wait and see what happens…

Book Review: April Witch by Majgull Axelsson

April 8, 2010 in Book Review, General Disability, Literature, Philosophy | 1 comment

April Witch

Majgull Axelsson (Translated by Linda Schenck)

I breezed through this 408 page novel in three days.  Being who I am and knowing the plot of this book it is easy to understand why I devoured this book so voraciously.  Originally published in Sweden in 1997, it won the coveted August Prize and created a stir in its home country, mostly due to its realistic and harsh description of Sweden’s post-war welfare state.

This book has much deeper topics to ponder than Swedish politics, though.  The book centers around Desiree, a severely disabled woman, unable to speak or walk or care for herself, who spends almost her entire life in a nursing home after being abandoned by her mother.  But Desiree is not the vegetable she appears to be and was assumed to be in her early years:  she has a great intellect, spending her hours musing on quantum physics, philosophy and “The Great Trickster’s” cruel joke he played upon her.

Desiree is also an “April Witch,” a being whom is trapped in a severely disabled body but who is able to travel through time and space, enter and take possession of other minds, both human and inhuman.  Her psychic gifts allow her to pay supernatural visits to the three foster sisters that her mother adopted after abandoning her.  The three sisters know nothing of her existence but Desiree has an intimate knowledge of theirs.

Desiree, overflowing with bitterness and envy because of her fate, is determined to discover which of her three sisters “stole” the life that she believes should have been hers.  Upon further investigation it is revealed that their lives are no better or worse than hers:  they are each filled with emotional troubles, longing and loneliness, just as much as, if not more so, than Desiree.

Desiree is considered to be nothing but “a piece of driftwood” by most who come into contact with her, a member of society who has no apparent value and who must be cared for by the government.  The only person that has any sense of her extraordinary intellect and psychic gifts is her primary care doctor.  Her relationship with her doctor is both intimate and professional:  Desiree realizes that this doctor is the only person who has ever sought to understand her and who has ever desired a real relationship with her.  The reality of her severe disabilities only feed into her loneliness when she is unable to have the relationship with him that she desires.

Approximately half of the book focuses on Desiree and the other half on the sisters, their past and the chain of events that leads to the surprising ending.  Although this is a translation the prose is lush and lyrical, especially in passages where Desiree is musing about her own fate.  The book challenges our views on our understanding of “quality of life,” right-to-life and multiple aspects of disability politics, particularly for those who are severely disabled.

While Desiree possess supernatural abilities her psychic gifts play a much more minimal role than expected in the book.  The relationships between the characters and Desiree’s own musings about her fate play a far more important role in the unfolding of the story than the minor supernatural undertone.

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