I Am More Than My Disability

It seems we have had yet one more attack from this administration. One more false narrative and harmful rhetoric. This time the rhetoric is from RFK Jr. towards people with autism. Frankly, it doesn't surprise me. He’s made these statements before, and lest we forget, his boss once publicly made fun of a person with a disability. When people call the left “woke” one of the reasons appears to be because we do not like this conduct and call it out. If calling out hate makes me “woke” then I am wide awake, and have been for decades. 

I have another take on hearing RFK Jr.’s comments towards people with autism. To me, it was a right out attack on all people with disabilities in an attempt to limit them and take away their abilities and gifts they bring to our society. Certainly, his focus was on autism, but when I hear him say things like people with autism have “Destroyed” families, I think his remarks also impact everyone with a disability and every family that has a son, daughter, or sibling that has a disability. 

I have a bit of experience with people with disabilities. Let me tell you a little about that and a few stories, and hopefully my stories will leave you focusing on their abilities and not disability. For those of you that agreed with RFK Jr. 's statements, or thought Trumps mocking a person with a disability was okay, then you are too far gone and will not understand any of this, so I suggest you move on at this point. I would hate to trigger you with my empathy and compassion. As you can see, RFK Jr. has lit a fire around the world with his comments. He lit a fire in people that were once dormant to everything else taking place. I figured it was a matter of time before someone in this administration finally hit a nerve button and caused enough pain that many could not stay silent anymore. There are both conservative and liberals who have children and siblings with autism, so I think the sleeping bear has been poked. 

My entire life I have had someone with disabilities as an integral part of it. It starts with my sister, Charlotte. She was someone special in my life and the life of everyone who knew her. There are times that I do not know how to describe her complexities and her love, and other times where the words flow out of me that could fill a couple of hundred pages of a novel, and they might. 

Her influence on me started at a young age. I didn't even know it at the time, but when I heard stories of why she dropped out of Lafollette High School and never wanted to return, it affected me. Hearing about how she was stuck in a special education room in what they called the “K” wing made me confused as a child. Why would she be in one classroom all day, I wasn’t? Then, when my mom told me about the boys who fondled her in what us Lafollette Lancers call the “Pit,” and that unwelcomed assault scared her and was met with no action, I was angry. Charlotte was twelve years older than me, but there were many days when I walked the hallways of that high school and pictured her there, scared, and wanting to drop out. I wish I could have protected her. My youthful anger would have exacted a revenge on those boys.

Charlotte was like a second mom to my brother and me. She often took care of us when my mom was at work. She kept an eye on what we were doing, and listened for any sign of trouble, especially when we became teenagers. One time, Charlotte found me drinking my dad’s whiskey one evening, and shortly after I went out to play basketball in the driveway, thinking I could sweat off the alcohol, my mom was on the porch. She talked to me about alcohol and how it could harm me, and next thing I knew I was in an alcohol and other drugs class at school. I didn’t get mad at her. It was hard to be angry at Charlotte for long. She would hug you too much for that. That class became one of my favorites. 

I could tell a million stories about her. I could describe how she was smiling and in a wonderfully happy mood one day, and the next I would hear her crying through my bedroom wall. We eventually found out she was schizophrenic. Imagine not only having to navigate life having an intellectual disability but also a serious mental illness. I think she did her best. That’s really all I want to say about that. 

Influence! Yes, I can say that I sit here now, in my eighteenth year as an educator, and admit that Charlotte is why I do what I do. She is the reason I spent almost a decade in supported employment prior to being a teacher. She has also had a great influence on my two novels that are about mental illness and loss. When I am with my students, I picture her in my classrooms over the years, listening to my stories, being treated with dignity and respect, and not being looked at for her disabilities but for her abilities. She had so much to offer the world. When I was a dean of students, I gave a presentation about Charlotte and how she impacted me. The past couple of years, I created a lesson for my students about Charlotte. I wanted them to understand how great she was so they could see how wonderful they are. Her story lives on through her abilities and all the love she brought to her family. She certainly did not destroy it. In many ways, Charlotte was the glue that held my family together and none of us have been the same since she died in 2010. 

I could tell countless stories about people I worked with in supported employment, and how the companies that they worked for often made statements like, “I wish all of my employees were so dedicated.” I could tell you how a woman who was on my caseload, Sally, would often come up to me and give me a hug, not because she needed it, but because I did. Sally was in an institution for the first thirty-six years of her life, and she had more empathy than most. There was Shawn and Sarah who the manager at the restaurant they worked at once said, “Their positivity is helping my other staff be more positive as well.” Then, there was Mary Ann, who shelved and dusted books each day, and there was never a time that I was not in her presence that she did not greet me with the biggest smile and friendly “Hello!” that I have ever had, followed by, “How are you?” Mary Ann waited for a response from me. She didn’t ask me how I was just for small chit chat, waiting to talk, but was sincere about it. I think of Sharon who loved a good cup of coffee and conversation more than anyone I have met. To her, conversation was magic and she excelled at it, in a deeper way than most people I have known. 

After I became a special education teacher, I worked with a variety of students with disabilities. Many with learning and behavioral disabilities, and autism. Eventually, I found myself working again with students with intellectual disabilities and physical disabilities. A quick note here for people with learning and emotional disabilities, don’t think for a moment that RFK’s attacks on people with autism, is not an attack on you. This administration looks at anyone who has been in special education as being a burden, or a destroyer of families. I know many of you who voted for them, so I feel compelled to bring this up. They do not care about you either, which is why they have conducted themselves in such a manner and are also threatening services to students that are much like yourselves and were protected by an IEP in school. You may not have realized it at the time, but the safeguards of that IEP helped you more than you know. I made sure of it as your advocate at school. If you have taken the time to read your old teacher's words, this is another lesson for you. 

I have seen many of my former students that were on my caseload go to college, secure jobs right out of high school, move out on their own, find loving relationships, and some have gotten married. One of my former students with Down’s Syndrome is acting in the theater and is paid for his performance. He also lives on his own, and by the way, was the inspiration for one of my characters in my second book. That character was the hero of the story. He held the family together. I have another student who lives in Arizona now and has started working for the Arizona Cardinals. This particular young man is often underestimated, and has been most of his life from what he has told me. He was a student that always wanted more learning, more reading, but what he enjoyed most was sitting and having a good cup of dark roast, some dark chocolate, and talking about life. He’s told me those conversations meant more to him than any class he took. They meant a lot to me too. Still do! His insight of the world was always amazing, and is needed now more than ever. He once said to me, “I am more than my disability.” I had another student who had an intellectual disability that people also often underestimated. One day, I saw her looking at some books that she could not read. I decided right then and there that I wanted to teach her. So, my wife found me some interventions that were for preschool children and we got started. This young woman was a freshman at the time and according to her mother, grandmother, and her school records, no one took the time to read to her because basically, “What’s the point? She should be learning functional skills and not reading.” Certainly, those skills are important, but when a teacher has an eager and willing learner in front of them wanting to read, well, you read. She learned a lot in the couple of years that we read together and went up a couple of grade levels, something that many thought she couldn’t do. The most fun she had was when a group of us would do Readers Theater and have a blast reading and acting out our parts. I think the time spent reading was worth it to her, and her enthusiasm for school was a model for other students. 

More recently, I had a student that does have autism. When I disclosed to the class that my mother had cancer and I needed to occasionally take off to take her to her chemotherapy appointments, this young man came up to me and said, “Cherish the time you have with your dear mother.” Hell, not many adults I knew took the time to tell me that. I would dare RFK Jr. to stand in front of this young man’s father, a Marine, and tell him that his child has destroyed their family. I have a feeling that would not end so well. 

People with all kinds of abilities make this world a much better place. The people that I have written about here, and so many more, have had a profound impact on my life. So, when someone says something degrading about people with autism, I take great offense on behalf of every single person with disabilities that I have worked with for the past thirty years, and my sister who has impacted the trajectory of my entire life. 

Perhaps something has finally happened that has woken others up and finally made them realize that all of the pushback against this administration was never about democrats against republican, or liberals against conservatives, or left against right, but something much deeper. It is about right vs wrong. It is about morals and ethics, and not wanting leaders who are harmful to all of us. Leaders who lack any emotional intelligence. This has never been about winning or losing. However, we have lost something. We have lost our dignity as a nation if we accept the type of behavior that we are witnessing now from our appointed leaders.