When I was a boy, a neighbor child named "Butch'' V. lived near us. My friend Butch was 10, and I was 6, but Butch was fun to play with because he always wanted to play whatever I wanted to play. This was fun, and although Butch was "a little bit slow" as my mother termed it, he was always welcome to be at our house. I grew to really like him, and when we moved from the Rio Grande Valley to Los Alamos, I made it a point to say goodbye.
You see, Butch V. was not going to school at all, and the State of New Mexico did not provde school for children who were slow learners. Many parents who had children with special needs would pool their time together, and trade off with each other to give each family a break (now called respite care) from their special needs parenting. In the Fifties, children with special needs were either sent to an institution run by the State they lived in, or their parents took complete responsibility for their developmental learning. The Education for All Children Act was two decades away from its passage by Congress, and school districts were not legally bound to provide special education.
Between my freshman and sophomore years at Los Alamos High School, I volunteered at a day camp run by the Association for Retarded Citizens, an organization of progressive parents of children with special needs who advocated for better childrens' educational services and adult developmental services for people with special needs. The word "retarded" back then did not yet have the terrible stigma that it would in the future. The ARC, as they are now called, remains a powerful and effective group of parents and advocates for both children and adults with developmental disabilities. My experience in this Los Alamos ARC Day Camp would dramatically impact the path my vocational career would take in the future.
I found that my self-esteem was improved by the experiences I had with the day campers. There were children with a variety of types of developmental disabilities, such as Downs Syndrome, Autism, Cornelia DeLange Syndrome, Reyes Disorder, Praeder-Willi Syndrome, Cerebral Palsy, and what we now know as Fragile X Syndrome. But, for that week, it did not matter WHY these children had developmental disabilities, it only mattered that they were with volunteers who played with them, taught them games, and accepted them as they were. There were picnics, hikes, horses to ride, games to play, lunches to prepare, and friends to make.
That single week was the highlight of my summer. Like many people who volunteer at these wonderful programs, the reward was simply the chance to make a peer with a disability a little happier.
A cynic would say that we were there to make ourselves feel better. That would be partially true. There is always a hint of "but for the grace of God, I would be disabled." The fear of people with disabilities and their relative invisibility in the history of American life through being institutionalized or being homebound was palpable, even when I was a teenager. The idea that people with severe and profound developmental disabilities could live and work in their own communities was unthinkable.
People with quadriplegia lived in iron lungs. Blind Americans had special workshops set up for them, and their mobility training was provided by sighted teachers. State schools for people with blindness and deafness were where people with sensory disabilities were educated. People with Mental Illness were housed in State Hospitals, and in some cases cruelly lobotomized, never to recover. The whole picture, considering all types of people with disabilities, was that people with disabilities could expect that they would be treated as invisible, inferior, and unable to work or otherwise function as citizens with full rights under the law.
As high school progressed, my time was split between my studies, extra curricular activities, and volunteering in special needs classrooms in Los Alamos High School and helping establish the first community based residential program in Northern New Mexico, Santa Maria El Mirador. I knew that my friend in the Rio Grande Valley, Butch V., would need a place to live, because his parents were getting old, and his siblings were living their own lives.
Through Youth ARC, I had the chance to work in the classroom for children with disabilities at Los Alamos High School, and to invite other students to come and volunteer, and the idea of inclusion of students with disabilities on regular classrooms was 2 years in the future. Los Alamos High School's physical education teacher, Mr. Cox, made me a permanent squad leader in PE class and proceeded to assign three special needs boys to my squad. Although I was okay with that, some of my peers got tired of having to make adjustments to their presence in PE activities and sports. The guys with special needs were well treated, however, and saw themselves as peers with other members of my squad. That was a small triumph.
The Key Club for which I was an officer in my junior and senior years made the decision to choose the renovation of an eighteenth century adobe hacienda which had become a geriatric home, and then an estate owned by a wealthy heiress from Chicago. We cleared about five acres for gardens and greenhouses. We arranged for several union plumbers and electricians to renovate the buildings on the property, so that they would pass building codes for group homes for people with developmental disabilities.
The first residents moved in shortly after my high school graduation. The property was developed into a working model of what was best about community living for people with developmental disabilities at the time. There were growing pains, as the founder was removed by the State of New Mexico for spanking adults with developmental disabilities. The staff expanded and services multiplied over the next decade at an astounding rate.
Santa Maria El Mirador today is the largest provider of services to people with developmental disabilities in Northern New Mexico. The hacienda in Alcalde is still in operation, having expanded to Espanola, Santa Fe, and Los Alamos. I served on the founding board of directors, and our Key Club in Los Alamos won some awards for our role in helping Santa Maria El Mirador get off the ground. The story of my experience with people with disabilities began with Key Club, and continues today, in my retirement.
When asked what the correct nomenclature is to talk about people with developmental disabilities, I always use the word "citizen," which helps nondisabled people realize that people with disabilities are equal under the law in this country, thanks to the Americans with Disabilities Act, the world's first law in the world that guarantees equal rights for people with disabilities in the USA. We have come a long way, but the journey is just beginning.
Copyright 2015 by Peter Reum - All Rights Reserved
You see, Butch V. was not going to school at all, and the State of New Mexico did not provde school for children who were slow learners. Many parents who had children with special needs would pool their time together, and trade off with each other to give each family a break (now called respite care) from their special needs parenting. In the Fifties, children with special needs were either sent to an institution run by the State they lived in, or their parents took complete responsibility for their developmental learning. The Education for All Children Act was two decades away from its passage by Congress, and school districts were not legally bound to provide special education.
Between my freshman and sophomore years at Los Alamos High School, I volunteered at a day camp run by the Association for Retarded Citizens, an organization of progressive parents of children with special needs who advocated for better childrens' educational services and adult developmental services for people with special needs. The word "retarded" back then did not yet have the terrible stigma that it would in the future. The ARC, as they are now called, remains a powerful and effective group of parents and advocates for both children and adults with developmental disabilities. My experience in this Los Alamos ARC Day Camp would dramatically impact the path my vocational career would take in the future.
I found that my self-esteem was improved by the experiences I had with the day campers. There were children with a variety of types of developmental disabilities, such as Downs Syndrome, Autism, Cornelia DeLange Syndrome, Reyes Disorder, Praeder-Willi Syndrome, Cerebral Palsy, and what we now know as Fragile X Syndrome. But, for that week, it did not matter WHY these children had developmental disabilities, it only mattered that they were with volunteers who played with them, taught them games, and accepted them as they were. There were picnics, hikes, horses to ride, games to play, lunches to prepare, and friends to make.
That single week was the highlight of my summer. Like many people who volunteer at these wonderful programs, the reward was simply the chance to make a peer with a disability a little happier.
A cynic would say that we were there to make ourselves feel better. That would be partially true. There is always a hint of "but for the grace of God, I would be disabled." The fear of people with disabilities and their relative invisibility in the history of American life through being institutionalized or being homebound was palpable, even when I was a teenager. The idea that people with severe and profound developmental disabilities could live and work in their own communities was unthinkable.
People with quadriplegia lived in iron lungs. Blind Americans had special workshops set up for them, and their mobility training was provided by sighted teachers. State schools for people with blindness and deafness were where people with sensory disabilities were educated. People with Mental Illness were housed in State Hospitals, and in some cases cruelly lobotomized, never to recover. The whole picture, considering all types of people with disabilities, was that people with disabilities could expect that they would be treated as invisible, inferior, and unable to work or otherwise function as citizens with full rights under the law.
As high school progressed, my time was split between my studies, extra curricular activities, and volunteering in special needs classrooms in Los Alamos High School and helping establish the first community based residential program in Northern New Mexico, Santa Maria El Mirador. I knew that my friend in the Rio Grande Valley, Butch V., would need a place to live, because his parents were getting old, and his siblings were living their own lives.
Through Youth ARC, I had the chance to work in the classroom for children with disabilities at Los Alamos High School, and to invite other students to come and volunteer, and the idea of inclusion of students with disabilities on regular classrooms was 2 years in the future. Los Alamos High School's physical education teacher, Mr. Cox, made me a permanent squad leader in PE class and proceeded to assign three special needs boys to my squad. Although I was okay with that, some of my peers got tired of having to make adjustments to their presence in PE activities and sports. The guys with special needs were well treated, however, and saw themselves as peers with other members of my squad. That was a small triumph.
The Key Club for which I was an officer in my junior and senior years made the decision to choose the renovation of an eighteenth century adobe hacienda which had become a geriatric home, and then an estate owned by a wealthy heiress from Chicago. We cleared about five acres for gardens and greenhouses. We arranged for several union plumbers and electricians to renovate the buildings on the property, so that they would pass building codes for group homes for people with developmental disabilities.
The first residents moved in shortly after my high school graduation. The property was developed into a working model of what was best about community living for people with developmental disabilities at the time. There were growing pains, as the founder was removed by the State of New Mexico for spanking adults with developmental disabilities. The staff expanded and services multiplied over the next decade at an astounding rate.
Santa Maria El Mirador today is the largest provider of services to people with developmental disabilities in Northern New Mexico. The hacienda in Alcalde is still in operation, having expanded to Espanola, Santa Fe, and Los Alamos. I served on the founding board of directors, and our Key Club in Los Alamos won some awards for our role in helping Santa Maria El Mirador get off the ground. The story of my experience with people with disabilities began with Key Club, and continues today, in my retirement.
When asked what the correct nomenclature is to talk about people with developmental disabilities, I always use the word "citizen," which helps nondisabled people realize that people with disabilities are equal under the law in this country, thanks to the Americans with Disabilities Act, the world's first law in the world that guarantees equal rights for people with disabilities in the USA. We have come a long way, but the journey is just beginning.
Copyright 2015 by Peter Reum - All Rights Reserved
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