What Sally Johnston did was create a program whereby the client, i.e., the competent citizen, would hire, train, schedule and supervise the aide. The program would be embedded in an Independent Living Organization, such as ARISE, which would do the aide’s background check and physical examination, process the paycheck and bill Medicaid. Sally worked for Enable Independent Living Center, which turned out to be three times larger than ARISE and directed by Sara Wall- Bollinger, a real stand-up woman.
I wanted a mentor, someone to teach me how to be an effective advocate. I had tried to work with Beata Karpinska but that didn’t go anywhere. I was in awe of Sally Johnston; she was my hero, so I went to see her at Enable to see if she would teach me. Our meeting consisted of her speaking to me with condescension as if I was too dumb to understand, and repeatedly telling me how she was such good personal friends with the county executive, the mayor and so on.
I thought that one of the things a wise woman did was train the next generation of leaders. It was not to be so. Again, I was disappointed by what I found in the system. I began to notice things, like Sally Johnston only came to PTAC meetings occasionally, not regularly, and when she did come then she would only stay for part of the meeting. Johnston would leave, saying she had “important” things to do. How rude to tell us that we weren’t important!
Later there was a fairly substantial story going around that Enable’s Consumer Directed Personal Assistant Program (CDPAP) had been fined by Medicaid because Johnston had not been running it properly. Johnston, a long-time employee of Enable, was taken out as head of CDPAP and re-installed as the director of advocacy. Also, the county executive retired, the mayor was not re-elected, and I learned another lesson: politicians come and go but laws stay forever. If you depend on your political connections you’re going to end up with nobody with whom to work. If you depend on the law, it will always be there to support you.
So there we were, back at ARISE with me as chair of the Public Transportation Advisory Council wheeling in to lead the meeting. But Beata Karpinska, director of advocacy at ARISE, and Sally Johnston, director of advocacy at Enable, had called up all their supporters and gotten them to come to this meeting that normally they would not have attended. And they had primed their supporters to attack me. I wheeled up to the table but before I could call the meeting to order, Sally took over. She called one person after another to criticize me personally.
Well how about that? It was clear to me when I entered the room that I could not win so I sat silently. After while I tendered my resignation, which was—surprise!—accepted. The committee went back to the no-win situation of having rotating facilitators and accomplishing nothing. And I went home to mull over how this had happened. I had prayed! Why hadn’t God thrown a flag on the play? And then I figured it out.
I came to help. I told the people that the power lies within them—they didn’t need the hierarchal structure to become free. Seeing that they were losing power, the high priest(esses) gathered the mob, whipped it into a murderous rage, and I got crucified. I had never understood the crucifixion; now, through the grace of God, I did. Lesson learned; life went on.
My standing policy was that if you had an unresolvable problem with a person then you went over their head to their boss, so I went over Linda McKeown’s head to Frank Kobliski, executive director of Centro. I called, asked if I could meet with him regarding problems with Call-a-Bus and he said yes. How about that? Simple as pie. Who knew? In my journey through government systems I have talked to so many citizens who think they cannot talk to those who govern so they don’t try. One neighbor looked at me with awe and said, “I’ve never known anyone who called Washington.”
Call Washington, my friends. Call your state capital, your county government, your city administration. You are a citizen and, in this country, the government is supposed to work for you. You elected them. You pay them. Those who govern are your employees. Don’t look at them as having power over you; see yourself as having power over them. Claim your right as a citizen and go talk to the people who have the power to fix your problem.
So I went to talk to Frank Kobliski—and he walked into the room with Linda McKeown. Oh-h-h, that was awkward. I had come to rat out McKeown to her boss and here she was sitting in front of me. I questioned that, and Frank said that he didn’t know that much about Call-a-Bus, Linda was the authority, and he needed her there. Well, how about that?
I mentally sucked air and decided that if I was right in what I was going to say about her then I jolly well should say it in front of her, so I began. I laid out the problems for Frank. He listened and processed. Linda had taught me to be totally defensive with her; Frank was relaxed and forthcoming. Linda seemed to be operating out of a small, dark place; Frank came in, rolled up the curtains and threw open the windows. Wow! Fresh air—openness and transparency! I’d ask a question and get an answer. Amazing—what a practice!
What I most remember about that meeting was that at the end, I asked if some of us could come in and see how Call-a-Bus processed ride requests. This was something we had long been requesting from Linda and she’d repeatedly refused. When I asked Frank, he welcomed us in. Linda immediately said there wasn’t room. I said we could come two or three at a time. Frank said we were welcome and Linda should make arrangements.
WHO-WEE!!! We’d gained access!