Medical charity and self-advocacy organizations have always been at odds with interpreting disability with each other. Medical charity has always interpreted disability with the ideas of guardianship and fixing or conforming. Self-Advocacy organizations take a different approach. They teach the ideas of supported decision making based on self-determination, self-direction, and interdependence. I have been through conflicts between medical charity and self-advocacy as some of you may have also through the differences in philosophy. It’s really ‘Nothing about us, without us’ which is what I believe.
When thinking about supported decision-making, everyone thinks about the way they want to live their life. For example, when I choose a different way of living from others, it does not mean it’s not a quality life. If I choose to move out, then that’s my choice. A quality life is subjective to what an individual actually feels they want in their life or need at the time. No one can suggest a better quality of life or social skills to make others conform. People who interact with me need to remember who I am as an individual and how individuality really is what everyone wants.
This leads to too much frustration because of a social construction of conformity the mainstream media has used every day. Some people may be more frustrated with who they are than other people because their experiences with how society treated them or how individuals treated them in the past made them feel particularly unjustified and unaccepted living their life. I have been an example of this. This responsibility is not only what I need to be accountable for, but also what many who interact with me need to do as well. Conformity is also nonconformity that some may not fully take into account.
Many people have their own way of living while having their pride that makes them feel good about who they are. I can do what is right for me, and anyone who interacts with me has to know we can’t enforce our influences. Universal design is important in this way! Why can’t we create universal design in everything we do in society so that everyone feels that they can live their life the way they know best? Our society has always conformed to the idea that its citizens are vulnerable and need to be corrected to fit in, not in their natural way of living.
The world is a tough place to live in. Autistic people including myself can be vulnerable, we are all different from each other, and simultaneously we can all be vulnerable to what others are thinking including non autistic people. However, it does not mean as individuals that vulnerability is a weakness. Human culture is defined; all of us think whoever is standing out in the moment yelling the loudest, is the leader. This is not true, we are all leaders of our own life. It’s called self-direction.
In order to think through how to create a less vulnerable society, we can help by providing to strive for universally designing a world that everyone can live in with dignity, respect, getting their voices heard, and being able to function with everyone around them no matter what. Any one can lead their life however they want. We need to do better and we need to ease the pains of so many people, including Autistic and non-autistic alike.
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).
Must be proud,
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 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.
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,
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
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.
It takes effort,
It takes comfort,
It takes me,
It takes determination,
It takes a willingness to be honest,
It takes the ability to do,
so why lie or be lied to,
when there is the truth,
when there is the honesty of the truth,
when everywhere we go the truth is behind us,
the truth sets us free,
even when we have done things to hurt,
even when we have done things irresponsibly,
even when we have triggered many people,
even from our own chronic post traumatic stress throughout life,
even with the hurt and pain that we have felt
it doesn’t mean others have to feel that pain too,
it does not mean everyone needs to hear it,
it just means we have to let it go,
It just means we can’t hold on to something just because,
It doesn’t mean that we allow anxiety to take it over
and control it and exasperate the events or what was heard or done that was painful,
It just means that we let it go,
Let it go and move forward,
understand, determine, listen, guide,
sure, many took advantage of who I am,
sure, many misunderstood and misunderstand the person I am,
sure, sure, sure,
it just does not mean everything needs to be about what happened or what was said or what was done,
it’s about believing, feeling, and shutting it out of the mind,
putting it in the back of the mind
to recall once we are lying on our old bed with gray and smiles all around
ready for a laugh, ready to wipe away the tears, and ready to move forward,
for now, it’s time to move forward on the journey to that moment,
it’s time to live the life it was meant to be,
it’s time to think everything about what I want and not so much what everyone else wants or just thinking about everyone,
it’s my life, it’s my art, it’s my films, it’s my poetry, it’s my work as a scholar I am meant to do to make differences,
It’ time to live, it’s time to focus on me, it’s time to de-focus on those past events, those past things I tried, and be in the present,
I am me, so who are you.
I want me, so what do you want.
I crave my talents. So, what are you going to do about it.
I always listen to my own mind. So, what do you think about that.
I study, I read, I paint, I film, I do many things within my studies. So, how do you like them apples?
I mark my journey to the end to the beginning when I am ready. So, what?
I scope the map of my journey and everything I want to do and get done before it’s too late. Hah, are you ready for me? are you ready for what I can do?
I will have a positive life that I want to have. A-HA, why are you laughing?
I know what I am capable of and I know when and how I need support. Think about that.
So, let’s go and do this thing we call life, and live.
Because in the end, it’s all about living while having ups and downs, while maneuvering through obstacles, and working on what I want,
looking forward to the beginning when I am ready, and the journey to the beginning when I am old and gray.
Let’s do this! let’s live! let’s give it our all! And, once and for all, let’s just be the best we can be!
Take care and see you around.