November/December 2023: Climbing the Same Mountain Together

LENS, which stands for Lived Experience Network Speaks, is a blog provided by Meet The Need NC from our LENS Advisory Group. LENS includes individuals with intellectual and/or developmental disabilities (I/DD) experience, including people with I/DD, families, and caregivers with separate groups for those who speak English or Spanish.

We provide a space for them to share freely, but these opinions do not necessarily represent those of Meet The Need NC or all members of the LENS Advisory Group.

A Lifelong Quest for Ways to Overcome Misperceptions

This month’s guest blogger is R.V. Kuser. 

My name is R.V. Kuser. I have been living with a host of neurological and behavioral issues my entire life. I live with autism, schizophrenia and intellectual or other developmental disabilities (I/DD). You may be thinking that the poor guy has so many things against him. Let me give you some more information about myself.

I have dealt with many kinds of obstacles in my life. They were thought-provoking but not insurmountable. My progress towards managing in a world full of overwhelming stimuli and turmoil came with small incremental growth. This process took many years. I had help from family and the influence of teachers along the way. In addition to family and teachers, I credit my wife’s unconditional love, acceptance and support for who I am today.

I would now like to talk about my wife, Marlene, who is an integral part of my life. We have been married 36 years. We each have different areas of personal strength. You could say we represent Yin and Yang. The meaning of Yin and Yang is explained as, “Yin is negative and feminine. Yang is positive and masculine. Listening and supporting each other equally, ebbing and flowing from these roles depending on our needs and then there is harmony in the relationship.” We truly embody this concept. She has also helped me to discover my strengths, to believe in myself, and to have a greater insight into autism, schizophrenia and I/DD. We accept each other unconditionally. Our relationship has evolved into a mutually helpful partnership.

I now want to talk about my professional life. I am an educator, author and self-advocate. It was while volunteering in an Adult Education program for persons with I/DD that I realized my calling, my “aha moment.” It was then that I knew I wanted to share my perspective and knowledge to help people go beyond autism. I knew I could help children and adults who struggle with the same challenges I faced. I have lived experience unlike many teachers or some caregivers. I have an understanding of what an individual experiences and also how they interpret the world around them. Throughout my life I have found ways to compensate for my learning difficulties and rejoice teaching this to others. I have worked in education for 30 years, all grade levels from Pre-K to High School. 

I mentioned I am an author and advocate. For me writing is a way to advocate for people who are disabled. I want to share my personal experiences living with autism with individuals who have a misconception of what autism is and do not understand what it is like living with it daily. It is also important to share my experiences with professionals, family members and other advocates. It is most important for individuals who live with the experiences daily, to help those who are struggling so they know that they are not alone. 

My first book, “Challenged but Not Defeated: Strategies for Coping with Autism and Schizophrenia,” is a short autobiography. I talk about the power of hope and perseverance in my life and a message of acceptance and encouragement. It was not always easy. I didn’t accept the fact that I was so different from other people. I allowed my insecurity about my personal identity to be shaped by those who were not like me, but then I began to appreciate who I was and where I was going.

In my latest book, “Weight A Minute: Lessons a Family Learns through the Gift of Autism,” co-authored with Marlene, we tried to convey this very important message. The novel is about the importance of family and acceptance. The Weight’s live in Winston-Salem. The middle child lives with autism, and he is the hero of the book. Dr. Cynthia Briggs stated, “This novel will provide foundations for meaningful discussions both in the classroom and at home – it is very relatable to everyone.” 

My mental health is very vital to me. My diagnosis didn’t come until adulthood. I was 50 years old. I always felt out of place in the world until I got my dual diagnosis of autism and schizophrenia. An abundance of things came together. I discovered there are some elements of schizophrenia and autism that help each other. I figured out how to help my “mind” find ways to support different parts of my mental process. There are times when I feel extremely overwhelmed, upset and unable to think rationally. Also, there is a firestorm of emotions – fear, anger and hostility. 

Here is an example. My autism attempts to use logic whenever things seem very chaotic and gives my schizophrenia a template to deal with an unexpected or chaotic situation. On other occasions, my schizophrenia helps my very serious, logical autism mind find new ways to interact with people. 

I am writing a third book, “The Schizophrenia Story: We all Help Each Other.” It will be out in February 2024.

Individuals who may have some form of physical or mental challenge should not be defined by their limitations but by their strengths. People have very defined expectations and parameters about what autism is, or what mental illness is. I think that’s the limitation that a lot of people with lived experience are dealing with. The fact is that people, whether they’re disabled or not, all have limitations. We all have challenges. The idea is to think outside the box, outside the parameters. We don’t have to fit in the parameters that others set for us.

I am on a lifelong quest for ways to overcome misperceptions about individuals with disabilities – to let everyone know we CAN do anything. With Marlene at my side, we give greater insight when speaking publicly and advocating. We would love to hear from you – questions, comments or just to say “hello.”

About the author: R.V. Kuser was awarded the North Carolina Leadership Achievement Award in 2022 by the NC Council on Developmental Disabilities, Raleigh, NC. The award recognizes an outstanding NC self-advocate whose work has improved the quality of life for people with I/DD. He is also a Southeast ADA Trainer Member. R.V. resides in Winston Salem, NC with his wife, Marlene and Kaylie, their fur baby. For more information about R.V., visit his website at kusertalk.com or send an email to R.V. at rainman917@yahoo.com.