For Such As These

It’s nearly impossible to explain to those outside the state of California what our organization does and how it accomplishes its mission, which is to provide Supported Living Services to developmentally disabled individuals. Scarce few other states offer the “SLS” option, and it can be a daunting operation indeed. Here’s a brief, incomplete description and a little story to go with it.

In days gone by, nearly all people with intermediate to serious developmental disabilities were put in some kind of state run institution, unless a person came from a wealthy family able to pay for 24/7 care for that individual to be kept in their own home.  It’s probably a good idea to stop here and ask you to consider the most disabled person you have ever met.  Most people likely think they have met someone in the severe category, but often enough they actually haven’t.  Until I was twenty-two, I figured a young man I knew with Down’s syndrome fit the bill, or my seriously autistic cousin who lived with his parents. But I was way off. I learned that when I worked with babies and children in an Illinois "home" of 100 born with problems up until that point I had never conceived, much less witnessed.

There are people coming into this world with more anomalies than you can count on both hands, and miraculously, they survive. I won’t get too descriptive; try to imagine. Or imagine you (or a loved one) have Alzheimer’s, or a tragic accident, and end up unable to toilet or feed yourself without help and are basically left to the ministrations – in a just and kind world, we can call it “support” – of those willing to help you out in all possible ways in exchange for the meager pay of the social servant.

State institutions have rightly received the harsh and belated scrutiny they deserve, and most all of them have shut down in California. In fairness, I do not believe them all to have been horrible, but many of them were. A quick Google search will highlight most of the worst of the stories about institutions within all of the states.  So, the question becomes, where and how are you, or the person you love, going to be supported for those 24 hour days/nights? Agencies such as the one I lead work to do all that, at a fraction of what institutionalized support costs.

In the briefest terms, without the human rights and dignity discussion, that is what I and my peer agencies offer. CEO operational administrative duties notwithstanding, I get as involved in the lives of those we support as I can. I observe from time to time scenes that concern me, or I get a glimpse of the dismissive way some health providers, or someone in the community, may treat a person who is seriously developmentally disabled and unable to represent him or herself. Sometimes the people of the greater community are very kind. Sometimes they are not.

A listserv connection representing providers like me offered a suggestion to create one-page profiles to highlight basic truths about people we support.  There’s a correlate in the so-called normal working world; my corporate compadres will recognize this as the one page resume or synopsis. “This is who I am, this is what I do, here my interests.”  It’s your brand statement, your leave-behind so people remember who you are, hopefully who you really are, and what makes you special among many others who on the surface at least share many of your attributes.

I thought it was a good idea and started digging deep into the histories of the people we support. I am creating these profiles and including a photograph of the person.  I have been unexpectedly moved by this process. As I put them together, I have imagined how useful they will be: as introductions to health providers who may have seen them for years, but not really seen them at all. As reminders to new staff.....as reminders for some more experienced staff… as a reminder to myself of the very important work this is, though it frankly offers me none of the self-conscious glamour of my past life… as a reminder of how so many of us out there in the so-called normal world live on the basis of appearance and the most peripheral things, all too often confusing all that with what is essential.  

A composite profile looks something like this;  picture the person as well past thirty years of age.

Cary*

What people love about me:

My smile…my happy spirit…the neckties I wear with everything.  Sense of humor…playful…creative….handsome.

What’s very important to me:

• The memory of my father who died ten years ago. I still talk about him to remind myself that he is in heaven.  You may not understand what I am saying, but you will understand the word “Dad.” Please listen to my story.
• Stay close by me when I am in a new place, like the doctor’s office. I get quiet because I am scared. Stay nearby and talk to me, please, in reassuring tones.
• I love the feel of sun on my face. If I am sad, taking me to go walking will often cheer me up right away.

What I love

• Tools, toy tool and real ones. The hardware store.
• My book of photographs of people in my life who love me. Pictures of me and my Dad.
• My collection of bags so I can carry my precious things with me wherever I go.
• Car rides!
• Shopping at the Dollar Store with my own money.

How to support me

• I like to pick up objects that may not be mine, or be safe for me. Please set boundaries, and if you remove something from my hand, kindly “trade” it for something it is all right for me to have.
• If you learn some sign language, we might be able to understand each other in ways that could surprise both of us. Those are happy times that mean a lot to me.
• Please know that I can understand a great deal. I cannot show all that I know. It takes me a very long time to process words. You don’t need to keep repeating things. Speak softly and show me as much as you are able. I am afraid when people talk loudly to me, or are treating me like I don’t understand anything, because I do.

What I have to give:

• A great smile.
• I will share pictures of my family with you, and sometimes, a story about the Most Important Thing that happened to me, my Dad.  I might not use words. If you pay attention, you will know.
• I will sit with you and patiently listen to you. I love your stories.
• I can show you my room with all of my tools and toys. I know how to share.

You have the idea.

So, now each of them will soon have their little “advance piece,” their resumes. I am asking staff to carry some of these with our people as they venture into the community. Many people are kind. Others are not. I am half convinced that if all people could only look past the very obvious, they would be kinder all around.

It is no exaggeration to say that any of us is vulnerable to affliction, to challenges, and to changes that we cannot conceive.  When we extend ourselves in a truly communal relationship, we offer hope to the world our children and grandchildren will live in, and to the world we might one day find ourselves part of.

Many years ago I read the biography of a priest, Henri Nouwen, who deliberately chose to live and to work with the profoundly developmentally disabled. He did it as a practice to become a better person, because it was, he said, the hardest thing a human who had a choice to do otherwise could do.  It seemed very important to him in ways he could grasp spiritually, but not adequately explain.

He sometimes grieved and/or expressed enough discomfort about it all that a friend asked him why he continued to live in a situation that could be so trying, day after day, year after year. He said something I am reminded of as I do my research and construct each of the many, many profiles I am finishing:

“Regardless of my feelings on any given day these people are precious. I am convinced that it is for the sake of such as these that God lets the world continue at all.”

I can’t be so certain of that…but I don’t doubt it, either.