An activist is someone who takes action to fix a problem while everybody else walks around it and complains.
My friend Arleen and I—and thousands of other people—went to the Fourth of July concert at the NYS Fair grounds. Arleen went to use the women’s lavatory and didn’t come back. She’d been gone for so long that I was getting worried. When she reappeared, Arleen reported that part of the restroom, which had twenty or thirty stalls and had served hundreds of people that evening, had been flooded. She alone went to find someone to do the cleanup.
Arleen and I both came to action the same way: bad medicine. She had an illness that was misdiagnosed. This was followed by unnecessary surgery that was botched. I was damaged by prescribed antidepressants. For both of us, the wakeup call came from traditional medicine. Before we were abused, we both were docile women who did what we were told. We were, in that most favored word of the medical profession, compliant. But when someone invades your body and hurts you, you stand up and start challenging everybody. You trust no one, ask questions and demand answers.
For me, the introduction to action came from a neuropsychologist who said that depression is caused by the perception of powerlessness. We spent hours in conversation and testing, then he advised me to take a monoamine oxidase inhibitor to treat my depression. I thought, “That’s crazy! If depression is turned on by powerlessness then wouldn’t it be turned off by acting with power?” Thereafter, whenever I became depressed, I put my theory to the test and it proved to be valid.
In Onondaga County, Medicaid transportation and Call-a-Bus (Centro bus company’s paratransit subsidiary) were both providing service that was substantially below the level required by law. One of the reasons that I was depressed was because I couldn’t get to my medical or social appointments, and was treated like shit in the process. What can you do? “Nothing,” everybody said, but I couldn’t tolerate that as an answer. Because of the drug damage I’d suffered, I didn’t just get depressed—I got suicidally depressed, and antidepressants made it worse instead of better.
My life depended on fighting back so I joined committees that were addressing the problems of transportation for people with disabilities. There were twenty-two thousand poor people using Medicaid transportation; Call-a-Bus had about four thousand riders, but they were denying eligibility to people who had a legal right to ride. So I joined committees, big whoop. The committees consisted of people who complained in groups instead of alone; they were not activists and did not change anything.
The committees were like antidepressants: they made your feelings happier but they didn’t change the circumstances that were causing your unhappy feelings, so the unhappiness kept coming back. I kicked it up a notch and started talking to the power people: politicians in the legislative branch of local government, and decision-makers in the executive branch of government. The politicians talked a good line but did nothing.
In the executive branch, I learned that there is some government agency in charge of everything, and every department of government has a complaint process. Instead of complaining to my friends, I put my complaints where they would be acted on—but first I had to get the complaints investigated. That involved a lot of writing and spending a lot of time on the telephone, questioning, listening and learning.
I worked my way up the power structure from county to state to federal. I got the NYS Office of the Medicaid Inspector General to investigate Medicaid transportation, and I got the Federal Transit Administration’s Office of Civil Rights to investigate Centro. And, in the process, I got un-depressed. I learned to act with power; I became an effective complainer instead of just another woman sitting in a wheelchair whining about how bad things are.
I became a significantly happy person. I no longer was a depressed: I was an activist. I fixed things. I was powerful! Because of me—
- If you live in New York State and have the learning disability called “executive dysfunction,” you now can get assistance from VESID (Office of Vocational and Educational Services for Individuals with Disabilities) because I got it assigned a number and put into the system.
- If you have blood tests done at Upstate University Hospital, you can get the results directly from the lab. They used to refuse to do that, claiming it was against the law for them to tell the patient. Wrong!
- If you are disabled, you now can move more easily through a ten-block section of the most congested driving area in the City of Syracuse because I got the mayor to fix the curb cuts.
- If you drive up to the front door of my apartment building there now is room to pull back out into the street. Upstate University Hospital got a city permit to put up a wall around their new construction site. The city, without gathering information about the wall’s impact on the neighbors, gave them permission to shut down more than half of the street. I got part of the wall moved. Do you know anybody else who’s moved a wall with words?
I am an activist; I act powerfully to change the things that trouble my life. Those changes also benefit everybody who is like me, which is a hell of a lot of people. I no longer suffer from depression. And, oh yeah, the Medicaid transportation dispatch contractor got fined $80,000 and forced to sign a Corporate Integrity Agreement, and Centro had to spend half a million dollars on more short buses and completely revamp their eligibility process. All because Annie couldn’t stand being depressed.
So what’s causing your depression and what are you going to do about it?