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.
An interview with Steve Silberman with captioning coming soon on theamazinJ YouTube page!
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.