Tag Archives: self-direction

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

J in front of B and H in NYC with a mask wears a tye dye shirt which reads 3E Love with a heart shaped wheelchair. Embrace, Empower, Educate.

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.

Citizen’s Vulnerabilities and the Rights of All in this Society – Part 2 of 3

A Collage of my family life cycle: Hope you enjoy the picture!
Image Description: On the Top Left, Brandon's long term relationship, Jessie, next to it is Scarlett Arrow painting in Colorado with finters, next is my mother in Aruba, next is Scarlett smiling in the camera over the summer with purple flowers, Center is my parents smiling in the camera at dinner in Aruba, next to the left is Brandon being himself at a microphone at Eric and Merrill's day before the wedding party in Denver, below Brandon on the left is a solo picture of my Father, below my father is a picture of Eric, Merrill, Mom, and Dad at Scarlett Arrow's baby shower before she was born, next to that is Me, Brandon, and Eric while Eric is a proud new Father at Scarlett Arrow's birth, next to that is me riding Molly last year (my next lesson is Thursday).
There is a light blue border, there is a yellow background and some water seen in some parts of the image as well..
A collage of my family and I with my niece Scarlett, my sister in law Merrill and my brother Brandon’s long term relationship, Jessie

Our society created the mindset of the perfect mind and body back when Francis Galton created the word eugenics and the world decided that between Darwin’s evolutionary theory his creation of the word eugenics, that everyone became instantly obsessed with the human genome. To perfect the body and mind is to deny disability and separate from the imperfect human body to create a monster master race of the human genome that everyone will strive to be. This monster master race that everyone has been striving for since the late 19th Century, created the thinking that Hitler wanted to first exterminate people with varying degrees of impairments to eventually exterminating certain races, religions, and other peoples in the Holocaust who he thought society could do away with. I am sorry to say, but the world, created the way Hitler would eventually think about how the human genome, race, and religion. We couldn’t control how some people would interpret this thinking even today. However, this is not the only thing we need to take responsibility for, we also need to take responsibility for many other things throughout history both in our private lives and in the public.

Everyone seems to not understand that trying to perfect a human genome is trying to perfect something that is constantly changing, and constantly moving around in our bodies just like the universe is constantly moving. We are human beings so I understand why many people are obsessed with perfecting (and perfected) bodies and minds. However, perfecting a body and mind, is a very fine line between what we think is autonomy and what we think we need to depend on others for. As we are Human beings who live in this world, we are connected to each other regardless of the way we identify through race, religion, sexuality, gender, or disability cultures. The way we represent ourselves is independent of being human because being human really means that we need to support one another regardless since we all go through the same trials, tribulations, and rewards in life.

Supporting decisions and the way we as individuals experience life is important. The person centered approach most are beginning to learn now, is something that is a part of human nature since the beginning of time. Yet, we have in the past, and in some ways still do, only respect the decisions some people make while others we feel could not make decisions at all and could not think on their own. We need to give everyone the tools to decide and think about what they want  on their own. This thinking convinced many people that their decisions are illogical and not right. Making decisions for one’s life depends on the kinds of decisions we are making. Some decisions we can decide on our own, but many other decisions we need support from people who can help.  In the end, the final decision is ours.

Whenever I make a decision, it not only affects myself, but it also affects everyone around me in society and that’s when difficult conversations persist. These decisions affect us individually in many different ways. If a child rebels against their parents decision to change who they are, then the child and parents must take responsibility for their actions. Deciding on changing the way a person is, also changes the way everyone else feels about themselves. It is important to attribute every decision I make to the way I think about others and life. When I think about who we are as a people, I think about where we came from, and the people in our life that affect what we think. What we think sometimes can hurt who we are and/or other people.

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).

Supporting the Decisions Everyone Makes No Matter What Varying Impairments Anyone May Have including Autistic people

Supporting the Decisions for Everyone No Matter What Varying Impairments Anyone May Have Including Autistic People

Autistic people have rights just the way everyone has rights to be a leader of their life; Autistic people are thinking the way they want to think and are also human beings too with our own mind. Autistic people have feelings often feeling for others and have feelings that often feel pain by many other people who do not understand us. Autistic people grow up at different paces while others may just grow at the same pace as their physical age. Because many Autistic people grow at different paces, 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.

Though, Autistic people are vulnerable, and depending on the impairments, depend on how vulnerable the individual will be. It does not matter if the person is less impaired, they can be more vulnerable. Just because Autistic people are vulnerable does not mean we are not our own person. May be so many think that way because Autistic people feel so many emotions at once, that at times we either do not know how to use our emotions scaling back inward or use our emotions too much being considered to be over-emotional, rageful, and illogical. Whichever way Autistic people are, we are misunderstood by society as a whole, thus society is misguided in the way everyone should think of Autistic culture and human society in general.

Despite all of the misunderstandings and misguided ideas from years of a perception that someone with cognitive impairments is not capable, some in society are finally learning today what person centered really means. Yet, many do not presume competence. The tragedy of the thinking that Autistic people don’t have a mind capable like others has created in the past, a blood boiling battle scene between Autistic people and many others who striving for a way of conformity. Lately, the people who get the most credit for starting this battle scene is the organization, Autism Speaks. However, they are not the only ones who need to take responsibility for this battle scene between Autistic and non-autistic.

Many people before Autism Speaks have contributed to this blood boiling war between Autistic people and others who strive for perfection. Unfortunately, the mainstream media has contributed to this as well by mostly taking the sides of people who are against Autistic culture. This war against Autistic people is really a war against humanity and human nature, yet it should not have polarized thinking. 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.

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 pull back from society to make me the same as how others are. 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 12 years has been too hurtful to many who feel they want to embrace who they are regardless. This makes me feel that not just Autism Speaks, but everyone needs to re-think what we have done in the past that preyed on too many people and in some ways continue to do so.

Our society created the mindset of the perfect mind and body back when Francis Galton created the word ‘eugenics’ and the world decided that between Darwin’s evolutionary theory and his cousin, Galton and his creation of the word ‘eugenics’, that everyone became instantly obsessed with the human genome. To perfect the body and mind is to deny disability and separate from the imperfect human body to create a monster master race of the human genome that everyone will strive to be. This monster master race that everyone has been striving for since the late 19th Century, created the thinking that Hitler wanted to first exterminate people with varying degrees of impairments to eventually exterminating certain races, religions, and other peoples in the Holocaust because he thought society could do away without these differences.

I am sorry to say, but the world created the way Hitler eventually started the Holocaust when he thought about how to perfect the human genome, race, and religion and whether we like it or not. We create people like the way Hitler was in the world. However, this is not the only thing we need to take responsibility for, we also need to take responsibility for many other things throughout history both in our private lives and in the public.

Everyone is vulnerable in society, but we need to use that in a different way then the way we have been being vulnerable in the past. Supporting decisions that individuals make in the world is figuring out what will affect both the individual and society in a positive way. It is not about conforming to others, it is about being a leader of your own life. We just need to be vulnerable in the way we affect others and ourselves in the decisions we make in our life.

Much of society has been vulnerable to perfect a human genome that is constantly mutating, constantly changing, and constantly moving around in our bodies just like the universe is constantly moving. We can possibly change that, but we cannot stop that. Many people are obsessed with perfecting (and perfected) bodies and minds. However, perfecting a body and mind, is a very fine line between what we think is autonomy and what we think we need to depend on others for help. As society builds communities, we are connected to each other regardless of the way we identify through race, religion, sexuality, gender, or disability cultures. The way we represent ourselves is independent of being human because being human really means that we need to support one another regardless of what we want to influence since we all go through the same trials, tribulations, and rewards in life to form our identities and ideas.

Supporting decisions and the way we as individuals experience life is important. The person centered approach most are beginning to learn now, is something that is a part of human nature since the beginning of time. Yet, we have in the past, and in some ways still do, only respect the decisions some people make, while others we felt could not make decisions at all and could not think on their own. This is still is still happening today.

We need to give everyone the tools to decide and think about what they want in their life on their own even if it can be difficult with some individuals. This thinking presumed (and in some ways continues to presume) many people that their decisions are illogical and not right. Making decisions for our life depends on what kinds of decisions we are making. Some decisions we can decide on our own, but many other decisions we need the support from people we feel can assist us especially those close to us in making the best decision for making our life a success. There is always someone we can speak to that can help weigh the pros and cons of a decision in our life. For those who have more severe impairments, we need to help them as well to make their own decisions that are right for them regarding what the individual wants.

Whenever anyone makes a decision, it not only affects us, but it also affects everyone close to us in that decision, and in some ways can affect the rest of society as well. For example, when any one decides that they want to change the way their child is, they are making a conscious decision that will affect the way their child will feel about themselves and toward others as well. These decisions we make affect us individually in many different ways. If a child rebels against their parent’s decision to change who they are, then the child and the parents must take responsibility for their actions.

Deciding on changing the way a person is, also changes the way everyone feels about themselves. It is important to attribute every decision we make to the way we think about others and ourselves in our life. When we think about who we are as a person, we think about where we came from, and the people in our life that affect what we think. Sometimes what we think can hurt who we are and/or other people especially those close to us.

Though, the way we think depends on our experiences. For example, if we spitefully act because we think we want to hurt someone emotionally or physically, we essentially hurt ourselves in the process. The golden rule still stands to do good to others always, however, sometimes what we think is doing good in our mind, may be hurting others without even thinking it through. This is definitely true when Galton created eugenics that eventually became the study of genetics that led to the thoughts many people have had since then that has hurt society.

Autism Speaks may not have been thinking through in the past how they are helping Autistic people in society may not be actually helping Autistics everywhere, but they hopefully are starting to learn. However, every non-profit organization has been thinking irrationally including the Autistic Self-Advocacy Network and many other Self-Advocacy organizations that also seem to not think about the way everyone feels. Yet, the self-advocacy and the Neurodiversity movements that were started by self-advocates helped (and continues to help) the parent movement begin to understand things every day.

Every organization has their own agenda to what they think they are doing is right. Yet, everyone and every organization, through medical charity or self-advocacy, cannot know exactly how everyone feels because we all have our own thoughts and experiences, that are different than others and ourselves.
When thinking about supported decision-making, everyone thinks about the way they want to live their life. For example, an individual may choose a different way of living than many other people do on an actual daily basis, but that does not mean that individuals in society cannot live a quality life. A quality life is subjective to what an individual actually feels they want in their life. No one can suggest a better quality of life or social skills to make others conform to a society that is not universally designed for everyone. We need to accept and protect the boundaries we individually make ourselves to the way others set their boundaries too. We need to remember who the person is as an individual and how individuality really is what everyone wants as a single mind of their own.

Society can lead to too much frustration because of a social construction of conformity to make everyone the same, as followers. Some may be more frustrated with who they are than others because their experiences with how society treated them or certain individuals who treated them in the past made them feel particularly unjustified and unaccepted living their life. This responsibility is what everyone needs to fully grasp and think about how to create a unified world with justice served.

Everyone has their own way of living. Everyone has their pride and joy that makes them feel good about who they are. Everyone does what is right for them, but no one has a right to tell a person that the way they are living is not quality of life and not conforming. Conforming is living in a world that is universally designed to fit everyone even if society does not understand that type of conformity. Many times some impairments create situations that make a person feel they cannot function enough and in fact need accessibility and universal design to help them get by or even thrive in society. So, why cannot 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? That is a good question because our society has always conformed to the idea that its citizens are too vulnerable and need to be corrected (or fixed) to fit in.

The world is a tough place to live in. Autistic people can be vulnerable, mostly, everyone is different to the person standing next to them, and simultaneously we can all be vulnerable to what others are thinking. However, it does not mean as individuals that vulnerability is a weakness. Everyone is an individual who can think on their own and are susceptible to others in the way many think.

Human culture is defined; all of us think whoever is standing out in that moment yelling their voice the loudest and often ranting a lot, is the leader. This is not true, we are all leaders of our own life, and self-directing, as we all need to believe that we are happy with who we are and connecting with others. The vulnerability everyone has is just a strength we have that we need to show others that we need support. So, we all get to support the decisions we all make in the best possible life we all want, including Autistic people.

In order to think through how to create more positive experiences with others in 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 able to function with everyone else around them no matter what. Everyone can lead their own life whatever way they want to live. We need to do better and we need to ease the pains of so many people especially in our society, including Autistic and non-autistic alike.

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