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.
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.
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).
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.