A Home Away from Home

I work in Social Services in a “home” to five people with intellectual and developmental disabilities.  It’s in a suburban development in a little Pennsylvania farm town.  It is a six bedroom ranch-style house that looks like any other house in the neighborhood.  Most people who live nearby do not know that services are provided for people there and that it is rented by a human services organization.  A few observant folks have put it together from the handicapped van in the driveway and the constant flow of different employee vehicles that go in and out at certain times of the day. 

As for the individuals who live there, four out of five are elderly.  Three out of five use wheelchairs because they are unable to walk.  Four out of five people have been in some kind of social services for most or all of their lives.  Two out of five have family who visit with them.  One of those two people came back with a cigarette burn on his arm the last time he visited his family.  One has family who only visits with him because there is money in the family and it is thought that after a death it will go to the person seen as the “caretaker” for this individual.  One person used to live in a state mental hospital the name of which is still whispered in this geographic area because such atrocities are known to have been committed there.  Two people are diagnosed with Down’s Syndrome.  Three out of five people cannot control their bowels and have special diets prescribed for them, one consisting entirely of liquid.  All of these individuals have difficulty communicating with others to varying degrees.  One has a deformed limb.  One has severe neuropathy and others have increased or decreased pain sensitivities because of various medical conditions and it is often unclear if they are experiencing pain.  The individual who has neuropathy has pain so severe with his condition that he is prescribed Vicodin to be taken three times daily…I have never, ever, heard him complain about pain or say “ouch” though he often winces as I carefully move him to his bed at the end of the day and remove his shoes from his swollen feet.  One person is missing a limb which may possibly be due to inferior/inadequate medical care due to her inability to communicate.  Five out of five individuals take medications for their conditions and trust others that it is the right thing to do since they do not understand what they are or how they work.  One person is legally blind, one lacks depth perception and one has severe hearing loss.  Believe it or not, this is just the tip of the medical iceberg – I could go on and on, and then I could add mental health issues, environmental stressors, past trauma incurred in this environment and no doubt in others. 

Five out of the five people have names.  Five out of five had parents and often siblings, friends and relatives who are now physically gone from their lives, dead or absent.  All of them are excited to see me when I walk in the door.  One person has asked me if he can move into a bigger house so that I can live there all of the time.  Five people tell me I’m their friend.  One person loves to joke with me and pouts when I am too busy to watch his favorite zombie show with him.  One person says “thank you” after I feed him or help him take a shower…every time.  One person tells me that he loves me and always tries to tickle me as I put him to bed at night.  One person asks me to talk to the ghosts in his room and to ask them nicely to let him sleep, and I do, always (at least four people that we know of have died in his room – he regularly sees lots of things we cannot see).  One person used to be a weightlifter.  One person looks at photographs from his past for hours each day.  Two people have significant others who they work with.  Five out of five people love children and animals.  One person always asks when I will be back and every time is disappointed that I am not returning sooner.  Two sleep with teddy bears.  One “intellectually disabled” individual, who is also usually the most nonverbal, understands some Amharic from the Ethiopian employees and occasionally answers them in their language.  One likes to kiss my cheek. 

Three out of five people go to a work deemed appropriate for their physical limitations 5 days a week and make less than minimum wage.  Five out of five people cannot go outside of their home unless they ask someone first and/or have assistance.  Five out of five people are not allowed to have a cat or a dog since they are not able to take care of it.  Five out of five people are stared at by others when they go outside of their home.  Five out of five are not valued by our society, just as they are not valued by their own families.  Five out of five do not spend time with people who are nice to them who do not get compensated for it.  Five out of five have experienced people being paid to spend time with them who are not nice to them anyway or have been abusive.  Five out of five are affected by “budget cuts” and do not understand this concept.  Five out of five are marginalized.   Five out of five rely on others – paid workers and strangers – to be their voice to stay healthy and literally continue to live in our society.  Five out of five people are completely at the mercy of strangers.  I think of these five people and the hundreds of others I have personally worked with over the years every time I hear someone say they are “pro-life.” And I am ardently pro-choice. 

Five out of these five people are my gurus.  I think of them every day, whether I work or not.  

My spirituality consists of what I consider to be direct experience (including inner experiences).  Therefore it sounds inaccurate to me to say “I believe”…but it sounds arrogant to say that “I know.”  So I will simply state that we, humans and animals, choose our incarnations.  We have lots of choices before we come here, and once here, we have certain other choices and “exit points,” multiple exit points that our consciousness and whole Being (because who we “Are” is not entirely here or even in the same place all at once) can choose.  I am in awe of Beings who choose difficult lives, or earthly lives that seem to involve little “choice” since from my perspective this is an intentional foray into one of the most difficult and physically dense existences possible.  I see all Beings as my partners and teachers, but especially these Beings.  It is my privilege to be able to support myself and my son by spending time learning in all aspects from these remarkable people.

                                           Wassily Kandinsky, Heavy Circles, 1927