The Pain of Being Different. 1-26-13

Happy Smile

On October 29, 2012, I was at peace with the world. True, I had a hard life, a very painful life, a life filled with medical, legal and structural challenges. But, I had created outcomes unimagined by most, quietly, over years, believing that I could, accepting no failure. I had accomplished progress for disabled people unattempted, because we were a beaten-down class of people. I loved my chosen work, advocacy. I was very good at what I did. I had a strong sense of support, security, and serenity.

That night the earth ruptured, spilling sewage, slime and scum across my safe haven. Indeed, thousands of lives along the East Coast of the United States, and Long Island were torn apart by SuperStorm Sandy, later to be spit out by FEMA. That was the night sincerity and belief ended for all of us and we learned about inept, unprepared government agencies, and what it feels like to be the underdog in a world that goes on without you. We learned that we did not belong. Overnight, for many thousands of survivors, the world became a horrible, unstable, outrageous landscape of bureaucratic crap, rancid officials, muck, outlandish decisions, poverty, rejection, half-hearted gestures, indifference, and callousness. A searing longing tore inside each of us, to go home. But there was no place left to go, except the slimy crypt of our lost lives.

And in this atmosphere of rejection and loss, I represented yet another layer: disabled during disaster. I was to learn the lesson of a lifetime, because I was disabled.

It had been a difficult road since the sewage surge for me, obviously physically, consumed in pain, absent my equipment, barriers everywhere. But the most insurmountable barriers had been in the minds of bureaucrats, governmental agency’s complete stupidity, inability and unwillingness to deal with anything related to disability or special needs. This created delays, denials, problems with paperwork, funding, living accommodations and communication. FEMA officers were perennially deaf, or just plain dumb.

Within this mindset, for three months I had been trying to make FEMA and all of its tentacles aware that I was not moving from the hotel to an apartment, because I could not physically function in an apartment, and I could function here in the hotel. I said it over and over — to every official, agency, badge-holder, phone caller, computer screen, piece of paper, finger tapping on keys. Still, FEMA never checked the box for disabled on my application, and agents threatened me on the phone and came to my hotel door to convince me to get out. It seemed that I was a cog in their carefully-coded, legally-allowable wheel.

After FEMA Agents came to my hotel room after dark on January 11, we seemed to reach a consensus that I was disabled and I would not be forced into an apartment. It seemed like the powers that be would finally stop hassling me. How easily we accept the apparent. The final drama in this sorry tale culminated within days.

On January 14 flyers were handed to each FEMA resident of the hotel, by a hotel employee. The paper said there would be a meeting on Wednesday, January 16 in the hotel lobby between 12:30 and 8 p.m. with FEMA and Nassau County Housing, to inform FEMA residents of their option to move on from the hotel into apartments and other temporary housing. The paper said we were expected to attend. On January 16 I had the flu. And, I had no thought of attending the meeting because I had just been assured by FEMA that I could stay at the hotel. I spent an uncomfortable day in bed, as I heard young FEMA agents scurrying past my room to the meeting, in conversation.

About 11 p.m. I noticed the red light on the house phone blinking. I dialed the operator. She said I had a “package” from Nassau County. Odd. The next morning I asked someone to go to the front desk and pick it up. It was a letter. Inside were three typewritten pages with 81 apartments listed. The envelope had the name of the Director of Housing and a phone number. I was shaking, because I realized the housing issue was not resolved. I called the number and left a message that I would not need their services because I was not going into an apartment.

The next day I went to my house to pick up my mail. When I returned, the house phone was blinking. I called the front desk and a woman said my “caseworker” had come to see me. I said I did not have a caseworker. She said, “Well they assigned you one.”

I wondered how this young lady, who brought two FEMA agents to my door after dark, knew that “they” assigned me a caseworker. “Do you want the card or not,” she said. A few minutes later she handed me the card and left quickly.

I looked down at the white business card. The words Adult Protective Services smacked me in the face like a sledgehammer. I stared, sure I had read it wrong. But there it was in bold black letters, Adult Protective Services.

I was scared, confused, sick to my stomach and angry all at once. I was shaking all over. What the hell were they going to do to me next? Had I fallen off the edge of the earth into Hell, or was Hell a four letter word called FEMA. I didn’t know what they wanted, or who did this, or if they did anything. I only knew I didn’t like that card. I wanted to go home, where young hotel clerks with attitude could not unlock my bedroom door on the whim of a county card.

I called the phone number, my voice trembling, and left a shaky message, “I don’t know what this is about, but I do not have a caseworker and I do not need help.” I hung up, feeling really stupid. I called back and went to the phone number the caseworker referenced if she was unavailable. I stopped following the County chain of uselessness after five consecutive answer machines. Diffused by the inefficiency of their system, I fell asleep more annoyed than worried. It was a nuisance, not real: so I thought.

The next morning I arose with a list of phone calls and tasks to accomplish. We, the survivors, were so engulfed with paperwork, documents, appointments, meetings, and phone calls since the flood, that it was like we had a full time job. I had no time for nonsense today. But nonsense has a life of its own, and the County of Nassau was triggered to wreck havoc on my life.

At 9:30 a.m., the phone rang and this pleasant-enough voice announced her name and title. I felt faint for a moment and then thought, I have nothing to worry about. Wrong! She said she had to meet with me. I asked what this was about, wondering if this was a bureaucratic maneuver or something else. I was in unfamiliar territory. She gave me a non-answer. I persisted, “Did you get a complaint?” She said she had, that I was in danger, that I was not entitled to know who reported, and that she had to “investigate,” so when could we meet.

I was shaking all over. I went into panic mode. I started defending myself, against what I didn’t know. I told her all the good things I had done, how strong I was, how invincible and competent. I wouldn’t let her hear me cry. All of a sudden, I was a severely disabled lady in a wheelchair, scared the system was going to lock me up for being different. How did I get here? I was so alone, in a world full of people who didn’t wear their difference on the outside. They were safe.

We spoke for 45 minutes and I assured her I needed no help and would not meet with her. She said she did not think her boss would accept that. We ended amiably. I heard no more.

It had been bitterly cold for days. The pain in my spine, chest, head, legs, demanded more of my attention the colder it got, the longer I was without my equipment. It was a constant reminder of how different my medical condition made me from everybody else: a fact I had been denying on as many levels as I could for all of my disabled life. This whole flood thing made me feel like such a cripple, and put the heavy burden on me to carefully hide my limitations and look like everybody else. It took all of my energy. But I could handle anything. For 35 years my life had been one enormous challenge after another, medical, legal, structural, attitudinal, discrimination. I was surrounded by barriers I must climb over. Doors were closed and locked against me and I learned to make a key. Every challenge made me more creative, stronger. I was afraid of nothing.

I heard no more from Adult Protective Services for a week. It was 9:30 on Thursday, January 24. The caseworker with the card called my cell phone. She said that I must meet with her. I told her no. She told me that she would bring the police to my hotel room and I would meet with her. I felt weak, nauseous, trapped. This was not happening!

I said, “You are threatening me with the police! You are threatening me with the police?” I was incredulous!

She said. “Let’s make this easy. I just need to see you for five minutes, to talk to you, to make sure you are all right.” That didn’t make sense to me.

“I was fine until you stuck your official fist in my face,” I thought.

I spoke no more to this woman. She was obviously deranged. “May I please speak to your supervisor,”

I was connected to a pleasant woman who, when she heard my name said, “How can I help you,” like she didn’t know what it was about. She thought I was stupid.

I explained that this caseworker had threatened that if I didn’t meet with her she would bring the police. The supervisor said, “She didn’t threaten you. She told you. We will bring the police if you don’t meet with us.” She was crazy too.

I said she had no right to threaten me with police. I did nothing wrong. She just kept prattling on. I had fallen into Social Services hell. I asked to speak to her supervisor.

The second supervisor was an inflexible woman who said if I did not comply with their demands they would bring the police to my hotel room and force me. Her words came from a book and her mind was fossilized. I turned my face away from her cold heart.

I did what I had to do to keep them from coming today. I scheduled an appointment for Monday at 1 p.m. She changed it to eleven. I told her I would not meet with them without a lawyer and a video camera. She mocked me.

But it was the weekend and all free lawyers, legal hotlines, the Attorney General, the Justice Department, all legal services were closed for the weekend. I wondered what the criminals did for weekend legal services. I called my Congressman. They would not “get involved with an APS issue.” I was starting to feel guilty. I didn’t know what I was guilty of.

I had been fighting for the rights of disabled people for over 35 years, accomplishing unbelievable change; and now I was being discriminated against and harassed, simply because I was disabled. It was disheartening. It was disgusting. It was incredible that this antiquated action was being foisted upon me, the master advocate, accomplished barrier buster, nimble scaler of great stone walls. I didn’t tell my children. I was ashamed.

On Friday evening my son called and asked me what was wrong. I reluctantly told him what was happening. It was humiliating. I cried.

My son spent the rest of the weekend calling and emailing everyone he could think of, at Fema, Nassau County Housing, Social Services, Adult Protective Services. There were responses saying it was outrageous: some offered help on Monday. But, despite his exhaustive efforts, Monday morning would come with no assurance that I was not going to be hauled away by power-crazed county workers and gun-toting policemen.

I had been unable to find anyone who was willing to meet with these people and prevent them from laying their hands on me. I was terrified, for no matter what I did, one could look at me and see that I was disabled. I was disabled! These people seemed to equate disability with inability. I was terrified.

The advocate in me, the disabled person, had done much soul searching over this long and tortuous weekend. And I cried a lot. I didn’t know what was going on, because APS offered no explanation, except that I had to meet with this strange agency that was acting like the Gestapo. I only knew that I was being singled out, compelled, specifically because I was disabled. The more I thought about what was happening, the surer I was that I could not comply. It was against everything that I had modeled over the years: about being an independent, barrier busting, self-sufficient, strong, disabled person: despite your disability, despite your pain, despite the challenges.

It was more than I could bear! It was against everything I fight for: against who I am. There was no choice. I would not let the system compel me to be discriminated against. I would not let the system make me a cripple. I decided, since I had accumulated no tools over the weekend to fight with, I decided, uncharacteristically, on flight. By sunday afternoon I was resolved. I had a plan.

It was a cold and snowy Monday morning. My son was still contacting people, trying to get the bureaucratic machine to stop turning. And, although the powers that be were assuring him that no one would show up at my door today, I didn’t trust the system.

I calmly packed enough food and clothes for several days, seriously not knowing if I would be chased down by misguided police cars and arrested. I was terrified of today and governmental systems without brains. I tucked my service dog under my arm and quietly left the hotel before dawn.

I went to my parking-lot office and jumped onto Optimum, behind an office building. I took care of business and emails for several hours, turning on the car intermittently for heat. My service dog, snuggled beneath layers of fleece, slept beside me, relieved that I wasn’t crying anymore. I was at peace with my decision.

I went to the bank, aware of every police car, and put the FEMA check in that I had been carrying around for a month, in case they detained me. Now that was safe.

Then I went to my house and parked on the street out front, not crying as I usually did right here since the flood. For right now, I was more me than I had been since that day that washed away my life in sewage: I was standing up for what I believed. I was the universal disabled person, changing action toward us, changing perception of us. I felt clean and serene. I sat there for hours in the cold car watching huge white snowflakes cascade silently to the desolate soil of my mutilated neighborhood and spread a winter wonderland before my eyes. Pollyanna watched the snow excitedly with me, until the quiet rhythm lulled her into sweet sleep. We were home. We were content.

My cell phone jarred me back to reality. I was sitting in front of my house with no walls, floors, electric or toilet bowl: Fema was insane, and APS was chasing me around with policemen. I was still disabled. I ignored the phone. It rang again, and again. Finally I picked it up.

“I’m in the lobby. Are you coming out? You were supposed to meet me.”

I said nothing.

“Could you come to the lobby to meet me.” It was not a question.

I said nothing.

“You said you would meet me in the lobby.”

I waited a moment. Then I said calmly, “I am not at the hotel.”

“You what! You are not at the hotel? Where are you?” She exclaimed.

“I called you. I left a message on your machine not to come. I told you I would not meet without a lawyer. I couldn’t get one over the weekend.”

“You left?” It was obvious she didn’t expect that of me.

“Yes,” was my simple response.

“Where are you,” she said, obviously frustrated.

“That is my business.” I was not intimidated. I was not afraid anymore. I made my point.

“If you meet me for five minutes, I will close the case. I need to see you.”

I didn’t care what she needed. But I did want her to go away, dissolve back into the sewage surge.

“I will meet you on the corner of Grand Avenue in Massapequa, and I won’t get out of the car.” I said. I expected her to show up with policemen, as she threatened.

I called two people to witness the meeting. While I was on the phone, she called. “Where are you? What make of car are you driving?”

I drove down Grand Avenue and didn’t see a police car. There was no place to park, so I parked in the nearest parking lot.

A few minutes later, a mousey woman with a straight bob haircut, grasping a clip-board to her chest, walked up and said, “This is not me. My boss makes me stalk people. This is not my personality. I hate it.”

“Why don’t you get a different job,” I said sincerely. It seemed an obvious solution.

“I understand how you feel,” she said. “I really understand how you feel.” She had no idea how her threats had traumatized me. She was a frivolous lady enforcing the mandates of a broken system for a pay check, without the conviction of her actions. (I later learned the APS ladies had no authority to threaten me with police without a formal hearing, compelling witnesses, before a judge.)

She stood shivering in the cold afternoon wind next to my car and said she was closing the case. I said, “So I will never see you again?”

She said, “That’s right.” I scanned her face for empathy. She was just a page with no words, hardly worth reading.

We engaged in light conversation. She said she knew I didn’t need help the first time she spoke to me. She shivered, putting on her gloves. I wondered why she harassed me for two weeks and threatened the police. But she was just a broken system malfunctioning. As she walked away, I felt sorry for her, for her lack of conviction. I closed the car window.

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