Contributions Mel Baggs made for Self-Advocacy Movement that Helped Me

Rest in Power Mel Baggs (sie/sier/siers or they/them/theirs)

Amanda Gaul a friend of mine edited this blog post for me. Originally posted on my second blog: Not Done Yet!

Mel Baggs standing in sier apartment while sie was in a video In my Languge from 2007.

In my language with Mel Baggs

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).

Citizen’s Vulnerabilities and the Rights of All in this Society – Part 1 of 3

J siitting on a rock as he is wearing a blue tee shirt which reads “I have special needs. I keep in the a box and under my bed and then feed them crickets. Today I just showed up with my regular needs just like anybody else.”

My support worker team from my self-directed services: Iona Northern edited this post with me.

Autistic people have rights the way everyone has rights .

Autistic people grow at different paces while others may just grow at the same pace as their physical age. Because of that we are often thought of as less than human, deviant from the norm, and due to our impairments many in society look down upon us thinking we do not have a mind of our own nor are we able to make logical decisions about the life we want. 

Autistic people are vulnerable, and depending on the impairments, that can determine how vulnerable the individual will be. It does not matter if the person is less impaired, they can be more vulnerable. Many think that way because Autistic people feel so many emotions at once, so that at times we either do not know how to use our emotions, we scale inward. or we use our emotions too much. This is considered to be over-emotional, rageful, and illogical. Whichever way Autistic people are, we are misunderstood by society as a whole.

From all of this misunderstandings and misguided ideas of a perception that someone with cognitive and sensory impairments is not capable, not competent, causes one to pause and be grateful that some in society are finally learning  how wrong they have been. The tragedy of this kind of thinking has created a disconnect and unmet need between Autistic people and the rest of society. There are a lot of people who need to take responsibility for causing this rift.

Unfortunately, the mass media has contributed to this by conforming to the ideas of this subjective interpretation. Many people are suffering from a society that lacks understanding. This war against Autistic people is really a war against humanity and human nature. The battle to fight for either correcting the genome from disability to embracing the genome and realizing cognitive disabilities like the way Autistic culture is, is something that needs to be accepted just as many other neurodivergences need to be accepted.

How far do we go to changing the human genome? Is it our right to change the genome that mutates and changes randomly over time? Who gets to say which parts of the genome are bad or not? And, is the human genome really a bad thing as many medical researchers are trying to correct it to make a perfected flawless human being? Is eugenics or genetic counseling really needed?

My feelings as a person who is Neurodivergent from outside the norms of society and as an Autistic person leads me to believe that I often feel like pushing to be who I am while getting push back from society to make me the same as others. The fine line between autonomy and being who we are versus depending on others to conform to the standards of society is enormously thick, yet we need to pull one way and push another to be included in the community. Autism Speaks as an organization has been through a rough war because many people feel their misguided thinking for almost 13 years has been too hurtful to many who feel they want to embrace who they are regardless. This makes me feel that everyone needs to re-think what we have done in the past.

Hope everyone enjoyed this 3 part series of articles. The next 2 parts will be coming soon.

Be around to see the next part!

TheamazinJ

I am back after a year and a half hiatus

Hey Everyone,

I want to let everyone know I am back. I will be posting my poems on this blog for now on and show my paintings here as well.

It will be a different type of blog, yet similar as there will still be the Autistic Artistic Carnival in 2021 on Autistic Pride Day. I apologize for the previous time where I was not ready to actually do the carnival that year. However, I am back and this will be better than ever.

Have a wonderful day! Enjoy seeing my tent from over the summer while camping.

Enjoy this from another blog of mine:

http://autisticcarnival.blogspot.com/2020/05/contributions-mel-baggs-on-self-advocacy.html
Jason @theamazinj on Twitter and Instagram tent at my campsite

Re-Investing in the Future: Autistic Artistic Carnival Coming Soon this June 18, 2019 for Autistic Pride Day

Introducing...... Drum Roll Please...
2019 All New, All Inclusive, All Ages,
All Parts of Autistic Culture from
The Autistic Pride Day Event 6 years
in a row, from 2010 to 2015...Autistic Pride Day, June 18...
It’s the One, the Only, the Much More Multi-Million Idea in a Lifetime,
Hosted by Drive Mom Crazy Blog, by theamazinJ:
Autistic Artistic Carnival
2019
Introducing…… Drum Roll Please…
2019 All New, All Inclusive, All Ages,
All Parts of Autistic Culture from
The Autistic Pride Day Event 6 years
in a row, from 2010 to 2015…Autistic Pride Day, June 18…
It’s the One, the Only, the Much More Multi-Million Idea in a Lifetime,
Hosted by Drive Mom Crazy Blog, by theamazinJ:
Autistic Artistic Carnival
2019

Submissions for this year’s reinvestment in the future for the Autistic Artistic Carnival is as it always was from 2010 to 2015. Any Autistic person from the all ages from youth to Adult to Seniors, from all parts of the Autistic culture regardless. It does not matter if the Autistic individual lives independently as an adult, lives with their parents, lives among their Direct Support Professionals, lives among Shared Living, Lives in a Residential School, goes to Public School, goes to Private School, goes to a Charter School, is a Senior citizen or even a Veteran. Also, anyone can submit as always, not just in the United States. There has been so many people throughout the world who had submitted their art work, films, poetry, writing compositions, brief short stories to keep people’s attentions, music, paintings, photoshop work, media work, scientific work, and for this year to dedicate to the Society for Disability Studies I would like to introduce any Disability Studies Scholars to submit any of their work they want to share in an image or presentation JPEG format for me.

This year is the reinvestment of the Autistic Artistic Carnival where will essentially create huge Autistic Acceptance, however a Tsunami of Human Acceptance across all Neurotribes from autism to autism with intellectual disability to developmental disabilities generally to psychiatric disabilities across the the mental health field. Neurotribes even exist among those who are nonautistic or Neurotypical, but generally speaking this is a socially constructed Neurotribe based out of the world. This year, more than ever, it will be a year for Disability Awareness Celebration and Acceptance no matter what!

Please email me your submissions to autisticprideday@gmail.com

by June 10, 2019

A Wild Journey to Acceptance

Hi Everyone,

(TRIGGER WARNING: There is noted talk of mental health crisis in this post)

I know it has been a while since I posted on this blog. It has been a long time because I am finishing my Master of Arts in Disability Studies at CUNY School of Professional Studies this Spring Semester 2019. I also turn 40 years old this year. I have been through a lot since 1997 to 2018. From that whole time which is a 20 year lifespan, I made a lot of stupid mistakes in my life, was very naive, and even went through 2 psychiatrists during that time. The first psychiatrist during that time of the first 8 years was a complete mess and utter disaster which caused the beginning of a living nightmare for me.

During the second half the 20 year lifespan, was seeing a different psychiatrist to try to stop the living nightmare from occurring. The living nightmare continued unfortunately until very recently in October 2018, when it started to subside and ease more and more. Now, I have to clean up everything that happened from 1997 when I first started my undergraduate schooling to October 2018 and take responsibility for everything. The best thing I can say will help me through this process is finishing my capstone to complete my Master of Arts degree in Disability Studies.

One of the things I learned in graduate school at CUNY is that I learned the process of coming up with my own ideas and learned that I don’t have agree with everyone while certainly I don’t even have to disagree with everyone either. I just have to come up with my own ideas and add to the discussions that are already happening. I also learned what I want to do with Disability studies. A strength is to use my knowledge and passion in Disability studies to use media like film to create media for the public to understand the message. I even made my first movie in 2017 when taking a noncredit class at School for Visual Arts in digital filmmaking. I met a friend from School for Visual Arts who is an actor to help me film it. It is on YouTube and this past summer I went to Joey Travolta’s Film Camp in New Jersey where I met someone to help me caption the film. I also do other things too with the paintings I make and the poetry I write as well.

Yet, I also have to learn from all the mistakes I made from 1997 to 2018 as well and there were too many of them. From being too adamant about choosing an undergraduate major as a Freshmen right out of high school to being too ashamed to admit a medication that is used for OCD caused me to be suicidal in Spring 1998. I told medical professionals I was hallucinating because I was too naive and thought telling that sounded better.

I actually did The Moth at the JCC Manhattan for the 2014 Reel Abilities telling my story in less than 5 minutes about my path to autism acceptance starting off with the experience from Spring 1998. It didn’t make it past the dress rehearsal. However, The Moth and the other participants, thought I should have done the final performance telling my story. However, it was the decision of Reel Abilities to choose who they wanted for the final performance. Everyone else loved my story. So, they never chose my story.

Anyway, from Spring 1998 to October 2018, I started on a whole lot of medications that literally distorted my thinking and created a living nightmare. When I finally left the first psychiatrist who started this, I saw a new psychiatrist in 2005 to this present day who wanted to change my medication all that time. This new psychiatrist confirmed what I know now that I am Autistic. However, it took him until October 2018 to change my medication to a different class of medication when the living nightmare finally came to an end.

One can only imagine all the stupidity and mistakes that occurred from 1997 to 2018. However, one can also know the positive things that happened too. I also learned recently since October 2018, sometimes when people see positive changes in the person who starts to feel good about themselves, those people don’t like it especially when they see the person who feels more positive no longer gives their power away. Hence, we then learn who really cares.

Many of the things I did in that 20 year lifespan, I wish I could take back and change, but I can’t. Instead I have to move forward with my life experiences from those 20 years taking the good with the bad. Every experience I had was a learning experience and it was the path I needed to go through whether I like it or not. Whatever experiences I will have in the future from this day moving forward, I will be ready for gaining the wisdom from those past 20 years and never go back to rehash any of those past experiences. They were just experiences I needed to go through to get to the present day.

As I move forward, I have to say that my experiences in graduate school has given me the opportunity to grow tremendously. I even did an unpaid internship as an elective during Spring 2018 for the New York City Mayor’s Office for People with Disabilities (MOPD). I learned so much from the Commissioner of the MOPD, Victor Calise and his whole staff. From that internship, I impressed so many people.

When I put the internship on my LinkedIn account after the semester was over, a connection I had for like 10 years or so, saw it, and emailed me to interview with him. The workplace was very close to where I live and is at the local independent living center. I interviewed with this independent living center and now I am working part time there while I finish my Masters degree. My last semester in graduate school I will be busy doing a lot of reflecting and creating the project I want to do for my capstone. When I graduate this May to receive my Masters degree, I will remember that it will be something I earned and will be proud of that I finally did something for myself without any influences from anyone else. As a professor once told me too, no one can take that away from me.

I will also remember where I came from during the 20 year lifespan that wound up being a living nightmare for not only myself, but my family too. I just need to remember it was the past, and now I can move forward. As I move forward, I can only remember how much I wanted to start graduate school, but couldn’t start right away. So, I took an undergraduate disability studies course at CUNY that the professor teaching it was very impressed with me, and helped me to start my graduate program by writing a recommendation for me to become a Kennedy Fellow for my first semester in graduate school. I can also remember something my professors told me during my first graduate semester at CUNY, to always think broadly and it is okay not to be perfect. I will always remember that. Now, I am a Kennedy Fellow once again as I finish up this degree.

It has been a long journey to get to this point with the new medication and I feel happy.

J