In his book The Sociological Imagination, C.W. Mills explains that individuals feel alienated because they cannot see the connection between their experiences, society and history. Some people are so wrapped up in their own problems that they can't see how history and societal forces have caused their troubles. Some concepts of the Sociological Imagination mark my life experiences. It is hard for me to risk independence with autism and apraxia. Most people have some idea of what autism is. Apraxia is a neurological disorder characterized by the inability to perform purposeful movements or gestures despite having the physical capability and understanding to do so. The struggle of my life is to not need so much help with activities in my day.
Ever since I was young, autism has been an alienating factor in my life. Whether it's socializing or making friends, my brain needs so many different stimuli to function. Getting my body to cooperate is like moving a mountain. I cannot stop moving and it diminishes my feeling of autonomy having others help me all the time. I need my real thoughts not so measured by my nonspeaking identity. It makes me mad and I feel intensely helpless to change others’ perceptions of me. I really want society to change how alienating it is to have autism and apraxia.
I’m making some progress in making purposeful movements. It helps if people are patient in giving me time to learn. Sometimes I get dysregulated and make a lot of noise. I really try to control my challenging body but I struggle. Having no control makes me frustrated. It makes it difficult for my caring aides to help me. They would not need training to work with me if society was more inclusive. It’s not really helpful to not see my efforts and assume I freak out on purpose.
Growing up I felt excluded from regular education. I learned very little in elementary school because I was in special education. I was blamed for this exclusion because of my disability rather than being included. This is like the concept of blaming good people’s biology for problems in society. When I was 8, I learned to communicate using a letterboard. My world all changed. Gone was the frustration of making real efforts to use communication apps that were too hard for my motor skills. My spelling allowed me to show I understood regular education. However, teachers and administrators at school didn’t give me access to my letterboard so I could not show my intelligence. Even though my parents advocated for me to be able to use it, the school refused. It was a violation of my right to choose the best communication method for me under the Americans with Disabilities Act. The same thing happened to many nonspeaking autistics across the country. Other students intensely advocated and it became not just a personal trouble. It became a public issue. Loud advocacy is still needed.
In middle school, I was still in special education but had no nonspeaking peers. I really hated school because those teachers intensely babied me. I had no meaningful education. I responded with apathy. In addition,so much stimuli resulted in information overload. It added to my overall sense of alienation.
Definite improvement came during COVID when I was homeschooled with my letterboard to communicate my understanding of general education. In high school, I
It is hard for me to see in history that most people didn’t want to make or sustain efforts to include people with disabilities. It was not until 1973 that Section 504 of the Rehabilitation Act was passed giving civil rights to people with disabilities in federally-funded programs. Before that, people with disabilities could not attend public school. In 1990, the Americans with Disabilities Act expanded rights of people with disabilities to state and local governments and private employers. I am as troubled by the frank inclusive language of the ADA that is not being followed as I am at the lack of inclusion in school. I get angry that the law is not being implemented for quality of life for people with disabilities. School administrators have no right to exclude autistics and they do it anyway. Advocates sharing some real stories of the struggles of autistics makes people angry that they need to change how they view disability. The lack of shared values makes it hard to make progress in inclusion of people with disabilities.
I really see lack of inclusion as moral breakdown because interest in helping others has changed in modern society. Not so many people respect the golden rule that you should treat others the way you want to be treated.
In artistic, caring settings, I have seen people shift their perspectives on disability. In my painting classes, there is a critique at the end of the class by professional artists. There is a discussion with real comments from nonspeakers who spell on a letterboard. The artists critiquing the paintings mentioned that they never
Mills says that when you see the connection between individual biology, history and society it may empower you to make changes in society. Some say Martin Luther King recognized this and it made him able to have a great impact on civil rights. I definitely want to make a difference in how society views autism: not as really sad but just different. Marginalizing me makes some people feel better or more all right because they don’t have my challenges. I really see having autism as a major challenge but not giving me no reason to hope for a happy life.
