Tag Archives: AAC

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).

10 ways Non-autistic people tell Autistic people to Pass For Normal is Stigmatizing and Does Not Allow For Authenticity

1) When an Autistic person is told to pass for normal, we are usually told AAC is not allowed to communicate with others. The people we interact with tell us that we must speak through our mouths.
2) When an Autistic person moves differently through ticks and stimming and the way we walk down the street, we are told that we must not do that and in fact must ‘Quiet Hands’.
3) When an Autistic person desires to be by themselves, non-autistic people think it’s weird, unusual, and/or strange making us look like freaks and weirdos.
4) When an Autistic person fulfills a dream of a painting, writing, music, inventions, or other special interests so the world can enjoy something from us, we are often told we are obsessing over things and to enjoy life without thinking.
5) When an Autistic person wants to spend time with animals more than people, we are told to spend more time with people.
6) When an Autistic person prefers to hang out with other Autistics because we feel less pressure to pass we are often told our Autistic friends are too weird.
7) When an Autistic person interacts with non-autistic people, we are told we lack the social skills necessary to interact with them. However, we are often not taught the real social skills (check out the REAL social skills) and often are only taught social skills from a child-like or very basic thing.
8) When an Autistic person is advocating for themselves and the Autistic community, we are often told we are being rebellious, obstinate, or misbehaving.
9) When an Autistic person uses their voice to speak, we are often told to lower our voices or raise our voices. We are never encouraged to use AAC (Augmentative and Assistive Communication devices) unless a non-autistic person truly has trouble understanding the Autistic person. Then, the non-autistic person typically mocks or mimics the Autistic person who uses AAC.
10) All too often Autistic people are mocked or mimicked for being Autistic and used as the ‘joke’ or for ‘comedy’.

By these Non-autistic ways toward Autistic people, we are far too often not allowed to be our authentic selves. Autism is a different way of life, it is a different dialect, different language, different way to move, and different sensory experience. Every Autistic person expresses autism differently. That is the beauty of Autistic culture.

Believe it and hopefully those non-autistic people stop making Autistic people feel too anxious to ‘pass’ for a normal that is too stigmatizing from the medical model. Thus, we are far too often stereotyped as well and for those Autistic people who do try to conform to the normal way from society are far too often objectified or seen as ‘posters of inspiration porn’.

AAC is important to me for communicate like any other Autistic person, but like many others like myself have always been told to ‘pass’ instead.

OUT, J

How to Encourage any Autistic person In Leading Their Own Life

There is a difference between ABA and floor-time, and there is a difference in what we really can do for my Autistic peers and I who need to be able to live self-directed lives. We need to realize how much the autistic spectrum can relate to themselves and how non-autistic people can enter into the Autistic world. Being an Autistic person means so many things, but their are some non-autistic people who still do not get it. However, there are some non-autistic people who do get it.

This post is going to be a list of what non-autistic people can do to help the Autistic community better self-direct our lives:

1) Stop and think before giving advice or direction to an Autistic person when we have not even asked for the advice or direction
2) Teach any Autistic person from the time they are a child that they run their life
3) Makes sure any Autistic person takes responsibilities for what they do from the time they are a child
4) Always include any Autistic person in conversations about them, always remember ‘Nothing About us, without us’.
5) Never demand any Autistic person is doing something wrong and that they have to do it ‘your’ non-autistic way. Let us be who we are!
6) Allow any Autistic person to identify however we choose, not the way any non-autistic person wants from us, i.e. do not instruct person-first pathology language.
7) Autistic people want to stim to help us through our lives, never say ‘Quiet hands’.
8) Never assume any Autistic person who is echolalic does not have a voice, everyone has their own voice with our own thoughts, ideas, and expressions.
9) We are human, we all have free will, we all have free choices, and any Autistic person is able to live inclusively in the community as long as non-autistic people do not tell an Autistic person how to live their life.
10) Don’t assume any Autistic person does not know, we are more capable of understanding things than non-autistic people assume.
11) Autistic people who do have tics, are able to do things too, we have tics, but it does not mean we are anxious.
12) Autistic people have been stigmatized by the society as a whole by so many other cultures in society, do not make assumptions about our abilities or disabilities.
13) Bullying any Autistic person into silence to speak the way non-autistic people speak is taking away the rights every one in the human race has.
14) Social skills is a human experience everyone learns about each day, so stop insisting Autistic people need to learn social skills from a non-autistic person. Every one needs to learn the real social skills, not the gibberish that is taught to Autistic people every day. (no one is a social skills expert)
15) Autistic people need to know we can set our own boundaries and are taught that everyone has their own space from childhood to becoming an adult.
16) Stop harping and hovering over any Autistic person’s daily life and allow any one to make mistakes. If it feels good to an Autistic person, than work with that so that it works well in society even when an Autistic person who has sensory differences from non-autistic people in society.
17) Do not label any one with how they function, who is it to you as a non-autistic person to label any one as ‘low’ or ‘high’ functioning? Functioning labels are a way to stigmatize and hurt Autistic people.
18) Give us some time for our own life to make our own decisions and preserve self-determination.
19) Being Autistic means we are Human too which means we can decide our own destiny and think critically.
20) Let any Autistic person use AAC (Augmentative and Assistative Communication) when we want to use it to communicate with any one in the community regardless. Communication is key in our life too to allow our voices be heard!

There are probably more, but for now this is good enough!

I know I have not posted in a while, but I have been very busy with my first semester of graduate school at CUNY School of Professional Studies studying Disability studies.

By the way, check out my project from class at the website I created with my classmate, DISQUAKE!!

OUT, J

Submissions for the 2013 Autistic Artistic Carnival Is Being Accepted NOW for June 18!

2013-AAC-

The Online Autistic Artistic Carnival is a showcase of various talents from Autistic people of all ages from music to art to writing to acting/Video documentaries to all artistic and scientific inventions are welcome. Autistic people can submit to Drive Mom Crazy blog starting March 17 through June 17! All submissions can be sent by email to a autisticprideday@gmail.com !. All work will be posted on June 18, Autistic Pride Day!

OUT, J

Submissions being Accepted now for Autistic Artistic Carnival for June 18, 2012

This is for any Autistic person from childhood through Adulthood to submit their work to my email address to be posted on my website on June 18, 2012. I am accepting any work from a creative work of art, writing, music, film, documentary, or someone who liked to introduce their latest positive productive invention they created to help Autistic people be seen as an important part of society. So dream up your latest creation or invention, get to work, and send your stuff to me to be posted on DMC on June 18, 2012, Autistic Pride Day. It’s your time, it’s time for us, Autistic people to SHINE NOW!!!

Email submissions can be sent to my email address at autisticprideday@gmail.com by June 10, 2012 by 11:59:59pm!!