My name is Angie Saylors, I am the proud mother to five children one of which was diagnosed with Cornelia deLange Syndrome around the age of 6 months by her pediatrician. For confirmation, we were sent to the geneticist at our local children’s hospital and were told that the “best thing that I could do for my child was to “find a place for her”. I refused and didn’t know that institutions still existed in 1998.
Little did I know at the time, that 9 years later I would be attending a Partners in Policymaking class presented by the Atlanta Alliance on Developmental Disabilities (AADD), sponsored by the Governor’s Council on Developmental Disabilities (GCDD) and would be privileged to take a tour of Georgia’s Central State Hospital in Milledgeville, Georgia.
Being a native of Atlanta and growing up hearing about Milledgeville being a “mental institution” was quite threatening, so having a child and being told “the best thing that I could do for my child was to institutionalize her and now visiting Milledgeville/Central State was to say the least overwhelming. I had no idea of what I was to see or how I would feel about what I was to see.
Upon arriving at Central State, I was extremely surprised at how large the facilities were and saddened by how many people had been institutionalized here over the years. I wondered how many mothers had been given the same speech and recommendation regarding their special needs child and had placed their child here having no hope of raising their child within their own home and allowing the child to develop to his or her own potential within their own limits of what is “normal”.
Before we began our tour, I asked the question, “why does the sign outside the Administration Building, say Central State Hospital”? rather than, “Asylum or Institution”? The person giving the tour answered, because we are a hospital”, there are many people here that require 24 hour nursing care.” And we were taken to observe “clients” (as the patients are referred to) that required 24 hour nursing care. Again I asked, “Why are these patients here”? These are persons/young adults that I would consider medically fragile and many parents are caring for their children within their own homes everyday.
Along the tour, which in my opinion was very “staged” for our group tour, with matching comforters on the beds that were all neatly made, “clients” as they were referred to, (not patients) in the “group rooms” being what was called stimulation or group time where the “clients just sat around a tables” with limited paper, crayons, boards for matching colors, etc. and no “clients” in their rooms.
I kept thinking as we walked down long hallways that were painted a dull off-white and walked through doors that had to be unlocked with keys and bathrooms that were in the hall ways where showers were lined up in groups of three with no privacy, and where very few pictures or color could be seen, how awful it would have been for my daughter to be “placed” here. To grow up without the everyday love of her family, to be hugged and touched everyday, to be allowed to be who she is and to become whatever she is to become. How sad these people look, how long have they been here? Why were they put here? Did they have a family that had simply given up or did they just not appear to be what is considered “normal” and followed the instructions of their doctors to have them placed here?
The highlight of the tour was meeting the “clients” that were considered “higher functioning”, and this is where I met a very handsome young man with Down Syndrome. He had the most beautiful smile, the best hugs and a strong desire for communication and to be talked with and loved. Again, I thought to myself, WHY is he here? This is not a home. This is an institution, a mental asylum. Tracy has many capabilities and could function very easily within “our society” and outside of Central State. He had no apparent medical conditions or what would be considered medically fragile or nursing care needs, why would he need to be “hospitalized”?
During the tour, I was asked by a reporter that was allowed to go along with us, “why are you here? Are you here because you are considering Central State as an option for your child someday”? I was totally taken off guard and could not believe that this young man that had taken this tour with me and observed what I observed would or could ask me if Central State was a consideration for my child?
Central State is simply not a place for persons with special needs or disabilities. Persons with special needs or disabilities are not persons that need to be locked up, disrespected with lack of privacy, confined, not offered or given an appropriate education, or restricted to an environment that blocks them from the public eye and to be forgotten.
Persons with special needs or disabilities are people just as you and I. They have the same needs, requirements, desires and dreams for life that you and I have. The only difference being, they were labeled as special needs or have a physical appearance that makes them stand out and be noticed. Many of the persons that have been placed within Central State are there for the wrong reasons and continue to be locked up as if a prisoner or detainee. What they need are accommodations and assistance that would allow them to become law-abiding tax paying citizens. Many of the persons there can give so much to the communities in which they would live and work.
A week has now passed since my tour of Central State Hospital, I will never forget the people that I met there. What an impact and humbling experience this was. Each day that has passed I look at my daughter and am thankful that I refused to be told what my child would not be able to do and where she should have been placed.
By Dorothea Cadet
A group of us mothers enrolled in the Partners in Policymaking traveled to Central State Hospital in Milledgeville a few days ago. Upon entering the massive grounds of the facility, I began to wonder what causes a person to be admitted. More importantly, how can a patient find the positive path back to home and community, if at all? As the single parent of an adult son with a developmental disability, I have to face my own mortality and what how it will affect my son’s life. Could he be placed here should something happen to me? Would there be a path back to home and community for available to him? How would my death or possible disability affect his physical, mental and emotional well being?
Our tour host graciously took us around the grounds of the hospital. Historically, Central State was the place of first and last resort to place a loved one with a mental and/or developmental disability. We visited with patients as young as six and old as eighty. Again, I pondered what does their path to home look like? According to our tour host, Central State Hospital immediately creates and designs exit plans for every person who enters. Their goal is to reunite patients to home and community. I would rather know that there is a revolving door to home, than a locked one. Yet, when I looked into the eyes of the patients we visited, I realized the path to home could be paved with thorns, thistles and weeds.
After our visit, I kept asking the questions of what, how and when. What will it take for us (the community at large) to realize that disabled people, regardless of the level of disability, want to live in freedom, inclusion and productivity. How much are we willing to commit financially, politically, and holistically in aiding the disabled in realizing that they have the ability to positively contribute to society? When will we (the community at large) stop looking at and labeling the disabled as unproductive, idiots, morons and lazy? We tend to think of them as a burden to society instead of contributors.
It is paramount that each of us comes to the realization of three things: (1) disability is a natural part of the human experience (it does not discriminate), (2) disability can occur from birth, illness, injury, and with age, and finally, (3) understanding and accepting persons with disabilities is the first step in ensuring that these persons will return home and become productive members of society. As in the words of Dorothy in “The Wizard of Oz”, there is no place like home.
Central State Hospital
By Judith Steuber
On many occasions I read articles on Central State Hospital. As a result, in my mind I envisioned the hospital to be little better than a 19th “insane asylum”.
On April 14, I was part of a Partners in Policymaking official tour of Central State and I learned there have been many changes since the 19th century. The facility is much like any other institution of its kind. Old buildings have been closed, newer buildings are clean and in good repair, employees appeared to care and administration appeared concerned about the ultimate outcome of those in their care.
As the parent of young men with disabilities, I wanted to know about institutional life. Previous experience taught me bricks and mortar do not define the place; people do. While the patients/residents appeared well taken care of and reasonably content, what was their life like? Is this the vision I have for my sons?
I was particularly touched by one man that I was fortunate to meet. He was friendly, outgoing and hungry for a new face. With supports, I could envision him in my neighborhood, talking to neighbors, going to work - living a real life with freedom to make his own choices. In a community setting he would be able to make real friends who would care about him and his well-being, not just staff paid to care for his needs. He would know people without disabilities as well as those with disabilities, thus, providing him with an opportunity to grow beyond his narrow isolated environment. He could learn to be a responsible, contributing member of society, not just a burden on the system to be provided with the bare minimum for survival by the taxpayers. He would be able to grow up, something we want for all of our children.
I could compare him with a girl I knew when I was young who had severe disabilities due to polio. While she was growing up she was unable to attend school and was home schooled by visiting teachers. Her mother ensured her place with the neighborhood children by providing every board game known to man and allowing us to take her on neighborhood adventures in her wheelchair. My own mother was horrified and convinced she should be protected from us since it was apparent that some of our adventures were not always safe. Her mother ignored the naysayers, was convinced she should not be isolated and would turn out fine. Her mother was correct. She grew up, got a job, met and married a man who was blind.They lived happy, productive lives.
When I compare the two lives – dependent isolation in an institution vs. responsible, community inclusion – I choose the latter for my sons. Will life be difficult for them? It probably will be at times but it is difficult for most of us at times.
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