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).

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.

A Poem Called "Burden"

Burden,

by theamazinJ

Am I a burden?
Am I broken?
Am I a problem?
I am leading my own life.
I am a director of my own services.
I am doing whatever I can for myself.
I am trying to feel whole
even with too many see me as broken.
Many people look at me
with dismay and horror
because I seem different,
well, Hello, I am different,
I am disabled, I am Autistic,
I am the person I am,
the way I was born to be,
and most importantly
no one can interpret me
as a burden,
as broken,
as a problem that needs to be fixed.
I am very caring and loving,
I have a mind that is beautiful,
I have a heart filled with gold,
I have a soul as old as the world itself,
but a burden? A real burden cause you see me as different?
A burden because I am disabled?
As disabled as many people in this society are,
belonging to the largest minority group
that grows and grows every day,
where our society does not accept
and our society just wants to fix for their own judgements
and their own way of creating a social construct
and their own way of editing the human race
as if we are not already a person
as if we are not already living
like none of us can make the right decisions
and especially if the person is disabled
like disability means the person is automatically incompetent,
and the disability really is not a part of the culture of humanity,
the human spectrum is strong,
the human spectrum is a wide array of differences and disabilities,
yet, no one wants to say it the way it is,
everyone rather euphemistically
use words like differently abled, alternately abled, special, and
stare at people who are different
as though the person is really a burden,
is really a problem, and really needs to be fixed and
constructed with the universal domestication.
Humanity is a spectrum.
Humanity is real.
Humanity has free will.
Humanity has our own minds.
We are in the human race for a reason in order to reason, question, and analyze.
I am a director of my own services, a boss, and leading my own
because I'm equipped with the mind I was born with,
no one was born with my mind,
they were born with their own,
and from that, the experiences they lived with their own mind all along.
And, to someday, we all have the choice if we choose to find a partner
and from that we all have the choice if we choose to make our own family
and from that we decide to teach our own or other children what we know
and what we want our children to know.
Someday I hope to be a husband, a father, a uncle, and eventually a grandfather
and even more so if possible, a great grandfather
teaching wisdom and teachings to children of my own.
I am 38 years old now.
Being a husband, a father, a uncle, a grandfather, and a great grandfather
takes great responsibility and integrity and partnership and how much you want it
regardless who you partner with and why you partner with the person you want to be with.
Some people don't want that and are pleased with themselves
living by themselves,
and the love we have is to treat every person with dignity,
not as a burden, not as broken, and without the entitled feelings
that someone may feel insulted, rejected, and hurt
if their child does not do exactly what they want
and exactly how they wanted their child to be based on their own ideas.
We have 2 choices:
Live with entitled pride and ignorance and cynicism.
or Live with humility and wisdom and a open mind.
We are not a burden.
Everyone is a human being.
Everyone needs to understand each other.
Everyone is whole.
We pray. Every morning and every night.
And, we pray for parents, we pray for siblings, we pray for ourselves,
we pray to be whole,
and we pray for understanding and acceptance.
Prayer is just a statement of what we want and nothing more.

A Poem Called "From Visible to Invisible"

From Visible to Invisible,

theamazinJ

I am visible.
I am invisible.
No one really cares.
No one cares about what my ideas, thoughts, and teachings are.
Everyone around me is selfish.
Everyone only cares about what affects them for me.
And, only cares about themselves and what affects them.
They really don't care about  disability rights,
they have no opinions for the goodness of disability justice.
Everyone has their voice, and I am silenced.
Everyone has their ideas, ignoring my own.
Everyone has their talents, as I am the garbage to them.
From visible as a physical being to Invisibility from humanity.
No one cares.
No one gives a damn.
Everyone only cares for me to live under their conditions of humanity.
No one cares,
No one gives a damn,
I am visible but am invisible.
I am told I am stupid.
I am told I am pathetic.
I am told I am an idiot.
I am told I am unintelligent.
I am told I am brainless.
I am told sometimes I am r&^*%^(^d.
It is painful.
It is bloody hurtful bleeding out of my veins.
It is deeply painful and makes me want to cringe into a hole.
I just feel like the blood just drips and drips until it is dried out.
Visibility is important without others making us invisible.
I am a fighter.
I fight till my voice is heard.
I fight till my ideas are recognized.
I fight to show how intelligent I am.
My ideas are a part of me.
My art makes me feel great.
My creativeness makes feel happy and pure.
My story didn't end until my voice is heard, until it is recognized.
My story does not end until people know the hard work I do.
My story fights for disability justice.
My story fights for everyone.
My story fights to listen to people without the common eugenics ideas.
Listening to the idea to know that everyone matters.
Listening to the idea that everyone cares
and if they don't it's treason.
Listening to the idea that my life matters as much as others do.
Listening to the idea that I am no one's slave in their own mind.
Listening to the idea that being enslaved is also being enslaved in everyone's minds.
I am the person who matters.
I am the person with my own mind no matter what.
I am the person with empathy and care.
I am the person who will fight the social construction condition you only care about.
I am a person from Invisible to Visible.
I am free. I don't care what you have to say. I have a voice and it matters.

A poem Called "Bilingual"

Bilingual,

by theamazinJ

It takes effort,

It takes hard work,

living with an operating system different than yours,

living in the community,

without realizing what to do is right

and what to do is wrong.

Living with an operating system 

where I need to be bilingual 

and live in a world of a different system

of a different language

and of a different way to operate.

Everyone lives with their mind.

Everyone lives with the mind that they have.

Minds work differently.

Minds need to learn to pass physically.

Minds call their own names given by our parents.

Minds experience things differently in the physical world.

Minds learning different languages of thought, beliefs, and ideas.

Minds learning to effectively translate words and ideas.
When one person's language is different,
another is trying to translate it.
speaking means trial and errors.
voicing what we want
even with a different operating system,
even with a different language,
even with a different way of viewing the world,
because autistic or not, disabled or without known disability
only articulates humor, only articulates humility,
and only articulates the grammar of who we are.
Bilingual or not,
we are of different operating systems,
from mac to windows
or from autistic or neurodivergence to neurotypical constructions,
from human to human to human,
we are different, but we are human.
Being human means,
being able to interact with any other person,
it means being able to help others when they ask for help,
it means being deserving of things we want for who we are,
it means being interdependent,
it means respecting the people who brought us into this world,
it means falling for love without hating,
it means learning to let go of things that don't matter,
remaining the things that have always mattered,
it means knowing who really cares and who really doesn't.
Without the paining moment of suffering,
and remembering life, liberty, and the interdependence while in the community
because in many respects,
disability does not deserve anyone, but it gets everyone at any point in their life,
it can make people aphasic, it can make people seem emotionally out of control,
it can make people use a wheelchair, it can make people use a cane,
it has the comprehension to make things incomprehensible and incoherent or even irrational,
and not only that disability can make anyone feel down until they come out,
regardless of what differences the individual has or what kinds of setbacks it creates,
or how the glass is always ready for a drink until the final drop
which is just as breathtaking as the first sip.
Life journeys through adventures to grow every day
into what we want to be, and journey to the other side of wonder.
The only one to make a person happy is when they decide to open the door
of the closet instead of hiding away without even enjoying life,
we can be lingual into ourselves, or we can be bilingual with the world.

A poem called "A Different Normal, A Normal different me, Different Kinds of Relationships"

 A Different Normal, A Normal different me, Different Kinds of Relationships,

by theamazinJ

Thinking of you, me,
Thinking of what ‘special needs’ that really aren’t special because they are just our needs,
thinking like you think I can do things that are very hard for me,
and thinking you think I can’t do things that are easy for me,
I have a lot of energy, but I am disabled.
I am able, yes, but I am also disabled.
Disability is part of the human experience and everyone needs to embrace their life and love everyone every day regardless
because at any point, life can be over, or we can become disabled or more disabled even…
I can become more disabled any day like you can become disabled at any time.
and you will still see and think I can do things all the time even though I am disabled.

Normal is different, normal is fake, normal is unreal,

I am disabled, and pushed to the brink of my energy, my time, and my limits,

even when my spoons are low or my lifely body portrays you to think of what you think,
You tell me to use my spoons wisely, so as not to burnout,
you tell me to work on things of what you want me to work on,
when I am who I am, even with what I can do and can't do all the time,
even with being able to do anything at any time I am able to do it,
I can't do anything everything everyday, but I can do anything at my time.
I noticed I do things when my feeling to do the thing
I want to do is when I have the spoons to do it
and decide to focus on that thing I want to perfect or just want to do or just need something to do to feel good,
Disability is a thing, it exists, and we have to accept
the things we do, things we don't do, and things we have the spoons for to do the thing we are doing,
I am different, yes, and most importantly, I am disabled and able,
I able to do things on my time, when I am ready, and when I have ambition, and when I have determination to do it,
My normal is different from you, different to you, and very potent to my life,
I can do, I do need support, but I don't need you to tell me or what you think I can and can't do,
Support is different because support is helping someone like me achieve self-determination of what I want to do, of what I need to do, when I am ready to do it,
Support is giving me the time to live on my own in my own living area with my own things and seeing you when I we have time for each other,
Support is giving me the opportunity to do what I want and what I choose for myself and supporting me while doing it,
even when I am writing something on my own, even when I am doing art, even when I am creating film, even when I am reading on my own, or even when I just need space,
Support is giving not what you think, it is not giving me love when you think you want to give it, but reading me well enough to know when I want it,
Support is giving you love when I feel you want it,
Support is not telling me rather just giving me the opportunity to talk about certain things that are hard for me to talk about,
Support is not telling me, and thinking I just don't know and am told, and support is being included in conversations about me,
Support is great when I am supported and not told, supported and loved, supported and can talk to you about things that are hard for me to make it easier,
support is when my anxiety is eased because I don't feel pressured, I don't feel told, and I am feeling in control,
I love my support regardless who you are,
I need support in certain areas just the way anyone else needs support in those areas, so just give me a chance to tell you what support I need and when I need it,
and I will listen and know when and who can support at the time,
Being told is not a good feeling, being told makes me feel out of control, being told I can't connect with everyone is limiting me, being told is being out of control,
I need your support and finally understanding,
I need your support so that I don't walk away in pain when I feel you don't understand and am low on spoonful energy, and need time to reconvene myself to you, or even when I feel hurt,
even when you don't understand why I am walking away even for a day or even sometimes longer than that,
It does not mean I don't love you, and it does not mean I don't care, it just means I need time because of the way you approach me or the way you understand things about me makes me cringe,
I need your support so that you know the love we give to each other when we all need love,
I need your support.
I know I left you at times, some longer than others, but I need your support, not your telling me, and not your ridiculing me, with easing on sarcasm, and definitely not your abrading me as if I feel like a nothing,
I am a person too even though I am disabled, even with being autistic, or even with my anxiety, or even with my sensory system, or even with my way of understanding the world,
or even with my way of feeling for you,
because I love you, I love all of you,
I love the way everyone loves me.
I am grateful for the love for me.
Support is when my life is not empty, and I have someone to go to talk with about something may be hard to handle at the moment
ultimately giving me the power to make my decision as the decision maker in my life.
I have services that give me my support workers, that give me my broker, that give me an agency too, that give me someone looking over my money I get for my services,
but that does not mean I need to be told, I just have a team of whoever wants to support me any time I need it and give me the time.
I love you, I love everyone because I am loved by all, loved by everyone.
I left you for a reason that left me needing my space away to have enough spoons to deal with you and think about ways you can better support me,
I needed this because you seemed to not understand, you seemed to think you knew everything even without listening to my thoughts, my opinions, my ideas, my creativeness,
and my learning about history and knowing how I feel and what I believe to make the world a better place,
You may not understand how I want to make a better place, you may not understand my art, but I do understand and have a sense of what I want.
While I left you because I felt like everyone left me in the dust without any support without any kind of things I owned before and needed to go back to the family who I needed space from at the time I walked away with you who tried to help me at the time
so I can get my spoonful energy back and reconvene myself to the world,
I know I hurt many people, I know I hurt by not talking that much to first the family in my life, and being silent to all a way long time,
I know I triggered everyone from either leaving without letting anyone know to triggering in many other ways,
when it comes to triggers, we can love and be loved, but there needs to be communication in every relationship especially when communication gives and creates agreements of supported decision making within those relationships I choose to have agreements with,
between me and the people I choose in my life for support and what kinds of things I need for support even as a disabled person with being autistic.
Having support from people means my anxiety is low, means I am in control of what I want regardless, and means everyone understands me, and understands what makes me tick and what doesn't.
And with that being said, even with bleeding love coming from our veins, it just pushes us closer to the support we all need in our lives.
I hope you understand,
I hope you know I love you,
I hope you know what support really is.
And, most importantly, I hope you know how much I love...

And here is a song by Leona Lewis:

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And Chasing Cars:

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