The Suitcase
My phone rang one night after midnight and once I picked up the receiver, I heard a hysterical woman apologizing and trying to tell me something about the police and news cameras.
Once I got her to calm down, I realized she was the owner of the board and care facility where my sister lived. She told me that the police and the State of California were closing the facility and transferring my sister to somewhere else. I tried to get more information but other than telling me that she had no idea of where Toni went: she hung up.
I had no idea of who to call. Offices were closed at the regional center. I waited expectantly for a call from her case manager but none arrived. She disappeared into the night in a vehicle of a State of California. I never learned what happened at the house. No explanations were provided.
Early the next morning, I received a call from a residential center in Fremont. The woman I spoke to explained that Toni had been brought there on an emergency placement. No details were provided about what happened. She gave me the address and I drove across the bay to see her.
Driving up a palm tree lined lane I entered a circle around which were various dorms and houses that contained about 125 residents. The large house in the back was where they kept Toni.
The grounds were very nicely kept and the residents seemed to be able to enjoy the property at their leisure. They were safely far off from the road below and the staff was ample enough to keep an eye on everyone.
The grass was well kept and in the center of the circle was statue of the Virgin Mary. Being a catholic, I saw the statue as a good sign.
Toni escorted me around the house with a staff member who explained the daily programs and activities. We entered into a small bedroom and there on the bed was a solitary suitcase. All of Toni’s possessions were contained in it. She had pictures of her brothers, Michael Jackson, Elvis Presley, her watch and some clothes. At 40 years of age these were all her possessions. So many of the gifts and clothes that she had received over the years were either lost, or stolen. I learned long ago that anything I gave her had a short life span. This suitcase showed me the difference between the world she lived in and mine.
Mine was about relationships, children, family, possessions and permanence. It was about work and disappointment too but I traveled freely and had independence in my choices. I made my own decisions. My life was the foundation upon which I could build a career or pursue some dreams out in the future. My life was such a contrast to hers and I tried to bring some of mine to her.
Toni spent her life living in institutions, with no family around, and spent her holidays and birthdays on the ward with the other souls left behind. She wore clothes that didn’t fit her let alone be fashionable. Her hair was never styled. Just cut. Her meals were communal and no one asked “how would you like your eggs done?” That suitcase still comes to my mind now and then and my reaction to the memory is the same now as it was when I saw it lying on a bed that was not hers, within a house that was not her home. It made me sad.
Serving in the Marines, I was familiar with the way institutions can coerce and force compliance from the men. In that environment, I could understand why regimentation, discipline and cold order were so important but for someone like, Toni who was born with Down Syndrome, it must have difficult and confusing to understand the rationale of what was happening in her world.
Most importantly, I was not a helpless individual trapped inside a vast state hospital complex without rights or advocates. Unlike Toni I knew the date when my enlistment ended. When the day arrived, I would gather my things and drive off the base to return to my home and family.
Toni’s life was very much like living in the military. She would be required to move out on a moment’s notice. Travel and live in many places. All her possessions could be packed in a Sea bag or footlocker. She had the cold comforts of living is a in large ward with no privacy, medical care, communal dining with a hundred of her closest friends, heat and people telling her what to do all day.
She had the infrastructure to support and sustain her but there was little warmth and no comfort. She was not an individual: just a patient. You could put her individuality on her dog tags. Like all military personal you are your name, rank, service number, religion and blood type.
Living in any hierarchical institution the power at the top has to have some coercive methods to get cooperation from an unruly or out of control patient, Marine or prisoner. My method was simply reminding her that if she became uncooperative or unruly the state could find it necessary to send her back to Agnew. I would try to make her understand that if she presented a danger to herself or to someone else, I would have no power to refuse the state.
The word Agnew brought that cooperation. It was a word that she clearly understood its meaning and would quickly adjust herself and be more cooperative. She could not tell you what she ate for breakfast but she remembered Agnew. It was clearly a name and place that was deep in her memory.
She seemed physically fine when I entered into her life. I never saw any scars and she seemed well adjusted. I thought it better to not spend time searching back into her past for gothic horror stories of abuse. I had no evidence of any so I thought it was better to put the rumors of inhumane care at the hospitals behind me.
We weren’t living in a movie about asylums and I felt that even if I was able to get all the reports to verify my greatest fears, that my time and energy would be wasted on events in the past and not on her. As her brother, I had only so much time and energy to devote to her. In spite of the bitterness of my knowledge of the history of mental healthcare, my decision to write off the past and move forward has served the both of us well over the years. Since all the reports were written by staff and doctors and witnesses were not capable of providing contrary perspectives I would never really know what happened. Sometimes, I would wonder what her life was like over the 15 years since I last saw her saw but I concluded that I needed to be prepared for the fights ahead and leave the past behind.
For the two of us the starting point was the day January 1969 when I walked into Agnew State Hospital and took her out for lunch. Almost everything else was behind her and all that mattered to her today was that her “brudder” was coming to take her to McDonalds.