Monday, May 18, 2020

Contributions Mel Baggs on Self-Advocacy

(Mel Baggs, sie, sier, hir, they, them)


In 2006 I was searching for a new way of thinking about disability.  At the time, I didn’t know much about disability studies, rights, and justice. I grew up knowing disability had to be fixed or cured, and there had to be a subset of normal and abnormal, and disability meant dependency. Then I found the Autism Hub and someone on it named Mel Baggs, a person who was autistic with many other facets of disability

From there on, the whole rhetoric I knew about growing up suddenly became dimmer and dimmer as I learned more and more deeper and deeper into disability studies.  I eventually earned my Master’s degree in disability studies.  And all this came, in large part, to Mel’s contributions on Autism Hub.  
At first, I didn’t get Mel’s contributions.  I liked Mel’s work, but I didn’t get it. Sometimes the light bulb takes a while to go on and sometimes it takes deaths for that to happen. In this case, it took Mel’s life in order to fully get it. Let’s take a look into how it did by glimpsing into the work of Mx. Mel Baggs. Here’s what I have taken away from hir work:  
When we are born, we are born with a brain, a mouth, a nose, ears, eyes, the ability to touch, and use our sensory system however we can use it. This system includes the brain and after watching Mel’s video on YouTube in 2007, my eyes opened up to remind me of this because I have always had a mouth I can use, eyes to see, ears to hear, a brain to process, and my body to feel. Not everyone has all of these facets at once.  In essence, I am a human being and I can breathe. My realization of Mel's contributions to my own life was when I watched her YouTube videos showing who she is and what she can and cannot do.

My life has always been rooted in fear, fear of the unknown, fear of speaking up, and fear in what will be if I get too comfortable or too risky. Take for instance, my own bar mitzvah, I had a hard time speaking up to enjoy a party my parents’ made for me with a theme I wanted - “horror movies”. It seemed liked I took it all for granted, and by golly, it seemed like that on the outside, but I never really got over that fear back then, and it slowly passes my life. The fear that disrupts my life to this very day from every job I ever had to a simple friendship and communication to even communication with my own family.  It makes me quiver knowing I have never really communicated so well as Mel had or many others throughout my life. It reminds me that during these times of quarantining and living with my parents, my family and I had a Zoom family gatherings and I still struggle with that fear. 
I have never been not fearful and but the fear subsided, a little, and I was able to put the fear behind me the more and more I read Mel’s work.  Mel’s work left me in awe.  To see such communications from an Autistic person who lived their life with a lot more disability than me, an Autistic person whose has an impairment rooted in fear of speaking up. And it’s not that I was not taught to speak up, but I was taught without understanding my fears.  Mel’s work showed another way.   I still have struggles with my fears, but understanding my fears brought me to a time in a couple of years before starting graduate school empowered me to speak up when I took my own initiative to transition my career. I spoke up  to my boss basically yelling at the doctor’s office I was working at, to say how I really felt. A year later, I applied for graduate school. This was my first step of many more steps to come in my journey of speaking up. Many of the people closest to me still don’t see me as a person even as I speak up. This can be frustrating, but I am resilient and always have been. My tenacity keeps me going and Mel’s contributions continue to help me as they are archived on the internet.
I know I’m not the only one influenced by hir work, which seems to be a catalyst and reminder that one can speak up, that we each have the power, and no one should be afraid.  Mel would sometimes only type, “I have the Power”, bringing to mind He-Man and the Masters of the Universe as well which was a favorite of mine. 

Mel also wrote powerfully about self-advocacy, particularly in hir piece, the Meaning of Self-Advocacy, found on autistics.org.  As Mel taught us, “Self-Advocacy does not always look good on paper”. I learned that self-advocacy is not just about speaking up, it is following through as a person.  Mel seemed to really understood how to make community, a community unified with everyone and be with the relationships who care. I learned through Mel’s writings and videos that the people involved in advocacy must act and be a team of communication. Sometimes you must be blunt, sometimes you must be told your acting out, and sometimes you must tell your feelings so the other person knows how you feel. 
 

But there’s something that Mel “got” that meant so much to me.  Sie pointed out in a 2016 blog post, “you can’t address your own oppression adequately without addressing ableism, no matter what your oppression is, whether you’re also disabled or not”.  Hir writing cut to the chase and simply put out there the truth that needed to be told.  

Mel Baggs showed a passion for agency and communication across everyone’s relationships. Without any type of communication, we really have no relationship and communication is not just talking. Another blog post Mel wrote that really delved further into this concept and sharpened my advocacy was in hir article “Aspie Supremacy Can Kill” when they wrote “On average the further from the norm you are, the more it is literally a matter of life and death that your value be seen as equal with the people with the most power” (Baggs March 2010.  Humanity is one thing that really means being with one each other with the flexibility to love and respect.
Finally, I always learned about Mel from hir work was no one can take the power away from us unless we give it to them, and if we don’t give it to them, then we have our own power. However, power does not mean disrespecting our family, friends, and people we vote into power in governments and other authority positions, it just means ownership in the responsibility of our self. 
Thank you, Mel, for a wonderful life of teaching your peers and beyond about speaking up and I appreciate every part of your work you accomplished to show all of us we should not get too comfortable and afraid. There really is a way to speak up to live our own life with what we want. I end it with this from Mel Baggs blog post from 2016, “You get the idea: We don’t all agree . You don’t have to agree with all of us. You can’t possibly agree with all of us anyway” (Baggs May 2016).

Thursday, October 17, 2019

(Warning: This poem may be triggering. It is about internalized ableism. It is also about the experiences I have had with a wide variety of people throughout my life)


Don't BE Afraid and tell it like it is,


By theamazinJ



Shut UP
Stop telling me what is good for me
ONLY I know what is good for me
BECAUSE I know best for myself
I don't like your attitude
I don't like your shit
I don't like your abuse
I don't want your aggressive behaviors toward me
I feel I need to stand up
I feel I need to speak up
Though, not in a aggressive way
BUT
I need to SPEAK UP and get my voice heard
I need to tell people who:
Manipulate
Make me feel dependent on them
Make me feel like a fool
Make me feel less than human
Make feel like a jerk
Make me feel like an ASSHOLE
And
Don't RESPECT me
That
I AM MORE THAN WHAT THEY THINK
That
I am more than what they say
And
That
I am more than what they do to me
I AM A PERSON
I AM NOT DEPENDENT ON YOUR NEEDS
I AM NOT GOING TO TAKE IT ANYMORE
AND
I AM GOING TO BE THE BEST
The BEST as all the rest
THE ONE who feels RESPECTED
LIKE all the rest
The ONE who every one won't push around
And
The ONE I CAN BE AS I CAN BE
NO ONE IS GOD
NO ONE IS PERFECT
Everyone IS a PERSON
INCLUDING ME
I HAVE MY STRENGTH
I HAVE MY DIGNITY
I AM NOT GOING TO TAKE
THIS BULLSHIT ANYMORE
That I AM PASSIVE
AND
CAN’T GET MY VOICE HEARD
BECAUSE
I WAS ALWAYS TAUGHT
I CAN’T GET MY VOICE HEARD
I WAS ALWAYS TAUGHT
WHATEVER I say is always INVALIDATED
And
WHATEVER I say makes me CRAZY
INSANE and NOT WORTH LISTENING TO
HOWEVER
I AM NOT CRAZY
I AM NOT INSANE
I AM WORTH LISTENING TO
AND I MAKE PERFECT SENSE
PLEASE
LISTEN TO MY VOICE
PLEASE
LISTEN TO EVERY WORD
I AM NOT GOING TO TAKE IT
ANYMORE
WHETHER YOU LIKE IT OR NOT
STOP YOUR RHETORIC
STOP TRYING TO FIND CAUSES AND CURES
I AM AUTISTIC
AND
PROUD OF IT
THIS is ME
TAKE IT OR LEAVE IT
BUT DON’T TELL ME WHO I NEED TO BE
AND
DON'T TELL ME I AM NOT MYSELF
BECAUSE I AM AUTISTIC
AND
BEING AUTISTIC is PART OF MY IDENTITY
AND
I AM NOT GOING TO CHANGE
JUST BECAUSE YOU DON'T LIKE WHO I AM
SHOVE YOUR OPINIONS IN THE TRASH CAN
AND
PLEASE ACCEPT ME FOR WHO I AM
AND
DON'T TELL ME I CAN'T
And DON'T TELL ME WHAT I CAN DO
I KNOW ME BETTER THAN YOU
because I am built from
how the creator made me
AND
I KNOW BEST WHAT I NEED TO DO or SAY
I DON’T NEED YOU TO TELL ME WHO I AM
I WILL ASK FOR YOUR ADVICE
When I need to ask
So
PLEASE STOP and THINK
AS
I AM TAKING A STAND
AS A DISABLED PERSON
AND
AS AN AUTISTIC PERSON
Who is PROUD OF ME
And MY AUTISTIC community
There is no more sorry's
And no more feeling passive
I am going to say how I feel
And
Whether you like it or not
I AM going to say it.
YOU MAY NOT LIKE IT
BUT
I AM NOT QUESTIONING MYSELF ANYMORE
I am just going to LIVE and continue to
BE PROUD OF WHO I AM!
NOTHING ABOUT US, WITHOUT US...

Tuesday, August 14, 2018

A poem called “Anxiety Sucks”

Anxiety Sucks,

By theamazinj

What a crock,
You fucking jerk,
You slimey ass,
How dare you,
How dare you,
Yeah, i am talking to you ass,
Yeah you in my head
Who needs to shut up now
And let me just be who i am
In this amazing world.
That's right, you, you foul loathing evil little shit,
Anxiety sucks and this is what I’d like to shout it at it like,
Cause anxiety sucks or better yet the name
I hate anxiety for called Klong.
Anxiety sucks and i can do better,
As long as i don’t listen to it,
As long as I don’t adhere to its bullshit,
Anxiety is beezwax,
Anxiety tries to put not only me down
But everyone else between it
and around it.
I like you,
i like myself,
Yet when Anxiety gets in the way
It becomes a panic,
It becomes hysteria,
Mania,
It makes people mad,
Madness destroys
Madness can be negative with anxiety,
Madness can kill with anxiety,
Yet, it can be maintained,
Anxiety can be compounded to balance
Balancing my head, my body, and
My embodiment to identify who i am
without the rage anxiety causes,
but mixing anxiety with being Autistic,
and better yet mixed with other
psychiatric disability
and the thing you get is a
whole hot mess.
Anxiety, autism, and so many others
are there for reasons many cannot explain
many cannot accept, and
many cannot even understand,
so many in a society focus on
things like cure, things like segregation,
things like separation, things like dehumanization
even with so many doing the things
to silence voices, censor words and sentences and books,
yet we live in a world where
all these things we call disability are
not very well accepted,
are not very well understood,
and are not very well remarkably coined
as what as being a person
even though it is very much a part of the
human experience, the experiences everyone will go through
from time to time or every day of their life.
anxiety wants to please and if we cannot please,
then we are doing something wrong and anxiety says
everyone hates us, anxiety says everyone thinks we cannot do it,
and anxiety says everyone thinks I am loser,
however, it's important to ignore everything of these words,
sentences, and say we build confidence that
we can do it with whatever we can, with whatever we have,
with whatever ideas we want to pursue with whatever we
can do it with,
because anxiety is there and can be maintained,
to help us to push us toward actually doing it
and being ourselves with pushing ourselves
as anxiety supposed to do without getting caught up
with anxiety too much or too little
when when we just sit and moll becoming depressed
and asinine,
no one knows until they actually do.

Friday, June 22, 2018

A poem called "Pride within and without Prejudice"

Pride within and without Prejudice,

by theamazinJ

Must be proud,
without prejudice,
everyone is solid,
everyone's fluid even with gender,
even with their thoughts,
even with strong willed thoughts
that we all think and think that,
no one is solid enough just to be rich,
no one is solid enough to be you, me, or anything,
everyone is vulnerable,
vulnerable to the point of moving away from you,
moving away from institutional thinking,
moving away from complicity,
moving away from compliance of what
the world wants stemming away from authenticity,
beating us down, beating us, beating us,
until we are all the same
and until no one is different,
and without authenticity,
however, what is authenticity?
Finding you, finding me, finding ourselves
until we are found,
found guts, found what we are.
Everyone has the guts,
everyone has the strength,
speaking to be well,
weaker than weak,
stronger than strong,
all in between.
Have you ever loved someone
so much, and found everyone
never really experienced who you are,
what you are, and think they are?
Maybe that is the problem,
maybe that is the thing that needs fixing,
maybe that is the thing we need,
we need
we need
we need
we need
we need what we want,
we need what we want
we need what we want
we need what we want totally
totally in our strength,
in our strength
to be who we are,
who we are in a world
who wants complicity
in a world who wants compliance
instead of respect,
instead of manners,
instead of receiving and giving and respecting boundaries
to the other person(s) or groups around.
They take our children,
they take our dignity,
they take everything,
but most importantly,
they take our love away,
only to say we have to love
the governing bodies or the complicity of compliance
that does not make sense,
because we are totally impart from that,
we are totally not like that,
and we are totally explicitly
controlled, we are all totally implicitly remarked
and we fight,
when we are told our voices are unreal,
when are communications are invalid and distorted,
and all our thoughts have to be programmed
the way dictators see it
even when dictators don't recognize it
even when dictators can't see it,
even when too many look too closely,
even when we just have the right
to freedom of speech regardless how we speak,
regardless what we want to say
to be complicit only to ourselves
compliant to the person we are individually
and never ever strike a match
start a war,
and fight another person
because we don't like that
or we don't like it
or we just have it
in the world around us
because we speak for what we want,
and it's always nothing about us, without us.
I love so much you
take it or leave it,
but never understand it,
because you never will
only for complicity
and for the unwillful act
to dictate and the unfulfilling
rights to be struck by a exemplary probation prohibition,
even when we are all really the person we are born as
and no one can take that away,
no one can get us to comply to behaviors not making sense,
and no one has the right to act
like they have it all, when they really have nothing,
think about it,
we cannot feel when we can't comply to something not making sense.
When it's really pride without prejudice
without being someone else.
Amen.

Saturday, May 19, 2018

A Poem Called "Humanity's Rhetoric"

Humanity's Rhetoric,

by theamazinJ

It's my own rhetoric,
different from your own rhetoric,
different from the rhetoric of the nonautistic, normal condition,
different from American conditional rhetoric
harboring eugenics which is now called genetics,
but different than genetics and science,
different from worldly cultural conditional dominant rhetoric
in the mass media,
and the less accepted rhetoric I have known on my own
and what I learn recently
and try to communicate
is a part of a unique different rhetoric
affixed to complete,
affixed to infinitely affinity to yours and yours,
but it's still different and unaccepted rhetoric
from the dominant discourse
many in the mass media,
many in politics,
and many of the lay persons even know...
my rhetoric, your rhetoric,
it's all about being the human being
we all were born as,
it's all about being the conditions
everyone wants to live by,
rhetoric of rhetoricity,
rhetoric rhetoric rhetoric,
echo it, echo your own,
echo the rhetoric you speak of
like everyone else does
if only to come to an understanding.
I live for my own,
while you live yours,
yours may be the dominant rhetoric,
while I am minority away from the dominant cultures,
embedded in disability culture
within my own body, my own thoughts, and the way I live
even as my own Autistic and stimmy and tic embodiments
experience the world
as part of my humanity
with my own way of centering myself,
with my own way I move,
with my own way of connecting,
with my own way of communicating,
and
with my own way of language
that many may not understand,
that many may not duplicate,
and that many may not know how to communicate,
because the rhetoric is different than yours,
different than theirs and different all around
both of us,
I love you, but the rhetoric is different,
even though the rhetoric we use
is different, but
it's unique to both you and I.
The rhetorics speak for itself,
rhetorics are a part of the human conditions
in the being of being human
in the eternity of time to live.
I love you, but can you understand me
even when I don't understand you,
and does it matter,
because if it mattered
my love for you and the world
would not be anything and everything
to me,
I love you, you and the rhetoric you speak of,
and the rhetoric different from you that I communicate,
but can we gather the ideas from our rhetorics
and finally understand each other,
if only with an open mind
like every other individual speaks
of their own rhetoric
around the world,
otherwise we would not be human.
Amen.

Monday, April 9, 2018

A Poem Called "Passing"

Passing,

by theamazinJ

Disability passes,
I pass to pass through you,
I pass for you to pass you,
I pass for me not for you,
I pass,
I pass to drive,
to drive through the engine of my mind,
what do I want to pass
or what does disability passing mean?
Disability passes through conditions
like a normal or typical condition the majority embraces,
or passing through a condition of their own which is
not respected, relegated, embraced, or acknowledged,
so an individual needs to pass for conditions
a condition that is not normal, a condition that is not typical,
and a condition that utilizes nomenclature not well received.
A nomenclature naming who we want to be,
what we want to represent, and
be the person we embrace in ourselves regardless.
Sometimes passing can be visible
while other times or many times seems too visible or even very invisible.
Passing is something impotent to the nature of who we are,
a way to stream, a way to be, and a way to live.
Passing flourishes everywhere
either all or nothing,
while we get to choose the passing
for something or the passing for nothing,
yet, passing is not really genuinely shiny
nor is it genuinely dark and dreary and cold and silent either,
it is just something we need to do,
we need to be, and we need to feel encouraged to live
no matter what and no matter who and no matter what we live
and how we decide on how to pass.
Passing diversifies all over, it travels, it marks a journey,
no matter what it spreads differences and similarities
whether we pass for a majority condition or not,
passing is a masquerade ball and shines like a prom
it shines like a ball dropping over new year's eve
and collaborates with how an individual
wants to pass,
so pass even without anyone judging or thinking
of judgements,
just pass and
choose the condition you feel most with
and respect the rest no matter what.
It's only what Thou wants and Thou receives as
becoming a part of Thou.

Sunday, October 1, 2017

A Poem Called "It"

It,

by theamazinJ

I am It.
Whoever I meet is It.
Everyone is It.
The people we haven't met yet are It.
The people we have met are It.
And, the people we will meet are It, too.
It is a phenomenon we call It.
I am It.
I am the unknown.
I may seem scary with my differences than you,
but I am It and you are It to me,
so to be It is not really a travesty,
not really a catastrophe,
not really a tragedy,
not really a inspiration,
it's not really a frightening,
It's just an anxiety of fears of the unknown.
From anxiety, the It we meet
becomes the enemy the one to be defeated and
the one to be destroyed
because the It takes on what is different
It takes on what is not the same,
and It takes on what we hate to change,
ourselves.
Be It and be the It that can help change the world
in a more positive change we have ever seen before,
and tell the anxiety from the It to Shut up and listen,
since the It is just everyone and everything around us
different than the same,
different than you,
and maybe can change the way you feel,
change the way you experience life,
and feel more power in your heart
to feel the way you can give support to receive everything,
take heart, take your life in your hands,
and grow with It.