Where are the advocates?

I hear people say that they are “advocates” all the time, and they work for an agency advocating for individuals with intellectual and developmental disabilities.

So where are they when the rubber meets the road and a need is there?  Life and death. Social servitude. They may have uninformed attorneys representing them, pretending they know the law when they don’t…and are not looking things up to make sure their belief is supported in law.

Yesterday I went (for the second time) to a recognition and appreciation of the work and music and life of Pete Seeger.  It was just amazing. The “house” was full, and it was a genuine gathering of people who appreciate and celebrate the freedoms promised in the constitution and who have been involved in the protests when these are denied.  Peter Alsop and his wife Ellen Geer run the Theatricum Botanicum where many wonderful programs of music and theater are produced.  This was built in the 40’s and beyond by Ellen’s dad and mom, Will Geer and his wife Herta Ware. Gerald Rivers gave a moving performance by delivering Martin Luther King Jr.’s “I Have a Dream” speech. I was in tears.  The audience was riveted and brought to their feet as they gave him a standing ovation.

This caused me to remember my early days learning about injustices and being involved in efforts to right them.  When I was sixteen I worked with the “braceros,” informing them of their worker’s rights.  That’s when I was shot at the first time.  When I was seventeen I worked in Mexico with impoverished townspeople and built a shower (yes, I did!), and helped build a library and taught English. When I was eighteen I went to jail in Torrance when Don Wilson’s housing tract would not sell to blacks…probably any non-whites.  In jail, we sang, “We Shall Overcome.”  Brother and Son led us in singing, “Where Have All the Flowers Gone?”

Today, I am wondering, “Where Have All the Advocates Gone?”  We know where the flowers went.  Where are the advocates?  Fighting.  Taking personal risks. Going to jail.  Going face to face with those who deny the rights of others?  Did the advocates get lost in bureaucracy?  Is a job more important than violation of rights?

Here’s what I was thinking.  Over the past forty years, I have been advocating for the rights of people with intellectual and developmental disabilities…and others, too.

However, the universe brought into our offices, three cases.  These cases have brought us an awareness of areas of injustice of which I had been completely unaware. How embarrassing!  What a miss.  How could I have missed it? Turns out I was not alone.  However, having now become aware, and having produced several informational conferences on the topic, guess what?  We are still alone!!!!  The agencies and the individuals in advocacy agencies, and those with a legal mandate to protect the rights of those with I/DD are not jumping in to right the wrongs that we have discovered, illuminated, and publicized, along with recommendations for how to implement corrections.

Three cases came our way.  In one case, a woman emailed me about her brother-in-law. She reported that he was being physically, emotionally, and sexually abused by his conservators/parents.  She had called Adult Protective Services to come investigate.  Apparently, they only interviewed the parents, and did not interview the victim or those who filed the complaint.  They came out three times, but never interviewed the victim, according to the caller. There was an identical experience with the Sheriff’s Department. Six opportunities missed. This was over the fourth of July weekend. The next working day, I called Disability Rights in Los Angeles, thinking they could get an investigator who would interview the victim.  I was told that I would “soon” get a call back to “open a file.” That was the beginning of July 2012.  We contacted the Board of Supervisors.  They were able to cause both APS and the Sheriff’s department to actually see Mickey.  He was emaciated, bruised, and asking for their help. The paramedics transported him to a local hospital where he was admitted and stayed for ten days.  I spoke to the Regional Center where the parents/conservators had previously closed his case.  I was told they could not talk to me. I said that was just fine, all they had to do was listen and say “OK” every once in a while to let me know that they had heard and understood what I said.  Regional Center went into action, although their hands were tied due to the conservatorship.  But, as I understand it, they did what they could legally.  APS notified the probate court and a court investigator made a report…but apparently never came to the house to visit with Mickey away from his parents.  The caller prepared a room in her house for Mickey, so he could live with her and her husband, Mickey’s brother.  But, APS did not talk with them, and thus did not know that, and returned Mickey to his parents, only ten days after hospitalization.  Within six weeks, he was dead.  Upon learning of this tragic outcome, I called Disability Rights in Los Angeles.  When I said what I was calling about, I was told that they were planning on calling “soon” to open the case.  I said, “Nevermind, he’s dead.” I hung up.  Over 10 weeks had passed, and so had Mickey.  Within the hour, I received a phone call from Disability Rights California, in which I was told that I “should have” contacted their office.  I guess calling the local office for help is not the thing to do.  But, how would I know that, when they promised to get back to me?  I know now.  But, it is too late for Mickey.

Mickey’s case opened our eyes to multiple system failures.

As fate would have it, soon thereafter I was contacted by the mother of an adult with developmental disabilities. His case had already proceeded through probate court, and paid conservators assigned to him.  However, the court was treating his case as if it involved a child!  The court was ordering “visitation” with the father!  For an adult!  In our country, as adults, we are guaranteed freedom of association (First Amendment), which means, as adults we can choose with whom to associate, and whom to avoid. Lots of people choose not to spend time or communicate with family members for a multitude of reasons.  And we have that right…wait a minute…who is “we?”  Well, obviously not this young man, where the judge must believe that the constitution is not applicable or available to people with disabilities!!!!!  The mother called on us, after having contacted thirty—yes thirty—advocacy programs, agencies and organizations who say they advocate for the rights of individuals with disabilities. None would help her help her son.

Then came the third case. As if the first two weren’t enough to send us into action (which they did), here came one more, illuminating additional and egregious failures in the conservatorship process.  Not the law as written, but how the system operates – without monitoring from any quarter. I remember in school learning about the balance of power, with the executive, judicial and legislative branches having monitoring and oversight responsibilities to make sure things turned out the way it had been intended.  But, to our surprise, the probate courts operate without oversight from any other branch of government, or from any entity whatsoever.  This is where the proverbial rubber meets the road.  The court is where laws are implemented…or so I thought.  Again, I was wrong.

In this case a proposed conservatee was represented by a court-appointed attorney.  Silly me, I thought that attorneys were required to be experts in their chosen field of work.  Silly me, I thought that attorneys had a personal if not professional code to be educated in the work they chose.  Silly me.  Well, it turns out, I was wrong, wrong, wrong.  The attorney for this case was asked by the mother of the proposed conservatee if her son could still vote even though conserved.  The attorney said to her, “voting would not be consistent with a conservatorship case.”  Really? Any right to be removed must be done with a showing of clear and convincing evidence that the individual does not have the ability to exercise that right or power.  The attorney had not developed any evidence on the issue of voting. He had simply assumed that his client did not have the capacity to vote.  Nor, by the way, did he allow his client to use his communication device when interviewing him…oh, no, he wanted his client to “just talk to him”  as if that were possible.  He did not file a request for communication accommodations for his client. In fact, the attorney did not know about (nor seek to learn about) such matters.  In fact, he violated his own client’s confidentiality by forwarding to opposing counsel the Americans with Disabilities Act application form for accommodations that we sent to him.

When we learned of these cases, and what they portended in terms of the failure of the legal system, we went into action, each time.  We conducted legal research, attended legal trainings on the topic, spoke with multiple individuals in the conservatorship system including judges, attorneys, etc.  We attended training programs.  We wrote about our findings.  We asked others to join us.  We asked MANY others to join us.  One agency so far has done so, the Arc of California.

Where have all the advocates gone?  Gone to flowers, every one.  Where have all the flowers gone?*


*For those who are not familiar with “Where Have All the Flowers Gone?,” it is a song that was written by Pete Seeger in 1955 with additional verses later by Joe Hickerson in 1960. It was based on a Russian (Ukranian) ballad, Koloda-Duda, referenced in the Mikhail Sholokhov novel And Quiet Flows the Don (1934).  In 2010, the New Statesman listed it as one of the “Top 20 Political Songs.” Check out a performance of the song at:  https://www.youtube.com/watch?v=rvivFT9MoX4.