Shadow of FEMA. 7-2-13

FEMA opens disaster recovery center in devastated area

There is value in losing everything, in being destitute in a world of plenty, in a world of things. When you have lost everything you struggled and sacrificed for all of your life, rather than a void to be filled, there is a crystalline strength in you to be accessed. You see clearly. You feel, untethered. You know truth, You fear nothing. Possibility is unlimited.

Nothing worse can happen to me. I have nothing left to lose. Nobody can hurt me more. That is very liberating, and sad. I tell no lies.

The agency of the United States Department of Homeland Security, called FEMA, is out-dated, and out of control. It needs to be investigated and held accountable for its actions and mistakes: re-thought, re-structured, re-designed. FEMA has become a pale shadow of its original intent, which was to coordinate response to a U.S. disaster that overwhelms local and state resources.

Present day FEMA runs rampant over people and circumstances, wrecking havoc on good and honest men, making a disastrous event into a human relations nightmare, an avenue to destitution and bankruptcy. FEMA treats people with callous disrespect, and gives them outrageous token assistance that is much more a hindrance to recovery than a help. People walk away from their homes, because they are being offered nothing: no help, assistance, options, no hope. People walk away from FEMA disrespected and bleeding. I watch broken peers walk into the surf, shoved out of shelters, with no place left to lie down, and I am diminished.

The problem is not the resources of FEMA or its limitations, it is the attitude, training, process, procedure and accepted outcomes. FEMA gives people only the ability to walk away from their homes, or paste together disorder and destruction, in the name of restoration: to become an unlivable sinkhole when FEMA is safely removed, working on its next disaster. FEMA is hindrance: negative help, professional bullies.

This is the country I love. I wish I could say something more positive about its effort to manage disastrous events. But, the only productive way to interact with FEMA is to point out their glaring failures, and hope that someone will respond with critical analysis and action. It is time to stop limping off alone, licking our wounds. We must stand up together and acknowledge how much damage FEMA does, for change to happen. There is momentum in truth, to action.

I am not afraid of FEMA. I lost everything. Then, FEMA destroyed all of the intangibles I had left. I join a crowd of survivors who have been hurt, not helped by FEMA. Perhaps we are irreparably hurt. Perhaps we can recover, despite FEMA.

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Sandy’s Fickle Fury. 3-14-13

Deep Flood Water

When the post-hurricane cyclone hit Long Island, its monstrous arm spun across our fragile landscape like a scythe slicing grass. It decimated whole neighborhoods and towns, while sparing isolated homesteads with illogical precision. I have heard this same story, same ending, different towns, with intermittent regularity. The fickle fury of natural disaster marks its gruesome path with random accuracy.

I recently met one survivor of such a random sparing, sheepishly harboring survivor’s guilt for being untouched in a neighborhood where most homes were devastated by the flood waters. She felt, “like there was an umbrella over my house.” I asked her if her house was built up high. She lifted her hand and indicated with her fingers, just a few inches. She didn’t understand why her home was spared. I am not sure that we are meant to know the reasons why. It happened! I venture to think that it is what we do with what happened to us, that matters.

She spoke of a house in south Merrick, on the Bay, located on a peninsula surrounded by water on three sides. I have been there a thousand times, being the daughter of a man who built most of the bulkheads, pilings, finger floats and marinas in Nassau County: creating the docks that took on water like sinking ships in the neighborhoods that flooded. I, being the progeny of generations of bay-men, decoy carvers, clam diggers, tasted oysters clinging to the seagrass on her boggy plot before her house was built. Alas, all of the land below Merrick Road was originally mudflats, marshland, ditches, cattails, swamp grass: man claimed it for his home. How can we then be angry at the land that reverted to its natural habitat when a meteorologic aberration stressed it?

I respect the land the bore my ancestor’s names, as I respect the unpredictable, raging sea, that swallowed so many of my ancestors, their sons and fathers, following in their chosen occupation. The salt water of Long Island is in my history and in my veins: I can read the bays and ditches of Long Island like a blind man reading information from a page of braille. Mudflats were my childhood playground, jumping ditches, picking buttercups amongst sea grass, digging clams with naked feet in cotton bloomers. And all the while the bay breezes fluttered fragrant through my long blond frolicking curls. But on one stormy night in October the golden south shore turned terrifying and torrential, blasted and bleak.

The woman and her husband had evacuated for previous hurricanes, but decided to remain in their home for Hurricane Sandy. After all we were all confident: the weather reports as the hurricane traveled up the East coast, were quite benign.

Actually, the National Weather Service made a decision not to issue hurricane watches or warnings north of North Carolina. Weathermen reported 74 mph winds, barely a Category One Hurricane, downgraded to a post-tropical cyclone before it landed in Atlantic City; no significant damage along the coast. Until Jersey! Suddenly, there were state and local officials on television warning the public of a curve to the west at about the level of North Jersey, the hurricane joining with a middle-state storm, a cold front, a northeaster, The reports were ominous, frightening! It was too late for many of us to act. Many didn’t believe the eleventh-hour hysterics, given the rantings last year about the “Storm of the Century” that fizzled across Long Island. Most of us lost our electric: before the storm hit. After that, you knew what was happening only right here, in the dark.

I left the sweet solace of my hospital bed, because my sons wouldn’t stop calling, urging me to get out. I went to a converted garage surrounded by tall trees a few miles away, where the wind was so quiet, that I felt silly lying on the floor waiting for the storm to pass. But, on the Merrick waterfront, boats were bashed against splintering docks and finger floats jumped onto bulkheads. rain pelted black waters, sifting sand through whitecaps, slopping onto patios, swelling, pounding the shore.

And a man and a woman sat in their home, prepared to wait out the hurricane, with candles and flashlights. As the storm progressed, the rain was relentless: and the wind slashed mighty trees and tore their roots from saturated soil, chewing chunks of structures into tinder. The homeowners questioned their decision to stay as the winds grew more fierce, too late, wandering from window to window, seeking relevant information. But all was black and cold, as the storm spit out mighty power lines. There was no comfort. There was no communication. There was only anticipation.

A flashlight darted toward the bay at the peak of the peninsula, the location of the most imminent approaching danger. The man strained to see the bay beyond the murky downpour, seeking information too late to make a difference. The bay was a mass of skating whitecaps, crashing against docks, washing over lawns, battering boats. “It’s o.k. Hon.” He believed what he saw.

“The other way! Look the other way!” There was urgency in her voice.

He turned his head toward the east and peered into his neighborhood. “OMG, I don’t believe it”. He exclaimed.

A river roared toward the house, a wall of sea water advancing. She hurried to the window, and was horrified, to see through the darkness, raging, frenzied water rushing toward them, strewn with debris: patio furniture, tree limbs, household items, lumber, chunks of siding, life preservers, and motor boats. There were no streets, no yards, only water, as far as she could see, rushing water, churning rubble. She was terrified. The comfort of her home had suddenly become a terrifying trap. There was no obvious means of escape. No vehicle could provide transportation. No structure could offer shelter from natures’s mighty wrath. Raging waters were the master of the moment: in control, eclipsing choice, smothering security. There was no place to go but where they were.

The fury of the storm increased, the deluge swallowed up their yard. They peered from windows at the swirling floodwaters, realizing that there was no higher, safer place to go. They thought of the children they could not call from this heatless, lightless room, and they regretted having no choice, and staying behind. There would be no rescue until the storm was done with its awful rampage and it was safe for rescue workers to approach. There would be no help in time to save lives. They were on their own, surrounded by an angry sea.

And in those final moments of uncertainty they looked at each other and were comforted by the history they created together in this space. As they watched from inside, aware of options closing quickly, and longing for daylight, the whirling tempest approached the concrete steps to their house, lashed them, spit-up foamy wreckage upon them. and seemed to stop. It sat there turbulent, for hours, threatening, teasing, slowly receding, as the homeowners respectfully waited: barring alternate choice. In the end, not a drop of water entered their lovely home. The homeowners were grateful, confused, humbled, traumatized, harboring survivor’s guilt: marked with an indelible imprint.

So it happened, that on the night of October 29, 2012, wind and rain swept across Long Island with insidious precision: the tide rose and sea water engulfed homes, reclaimed virgin marshland. Two homes stood on a primal bog that night: one was spared and one was swallowed up, at the inclination of the tide. And that made all the difference!

And we all understood that it is wonderful to live on the shoreline of Long Island. But, we must respect the genesis of this land, and the authority of the sea. And when the sea enforces its original right of ownership, to borrow or reclaim the land we love, we must acquiesce to its will or relinquish our claim altogether. The sea is a powerful and unpredictable force: with dominance over man and land alike. We can only borrow paradise, not own it.

Letter to the Editor (East Hampton Press, The Independent, www.indyeastend.com)

Letter to the Editor:

In 1962 I graduated from Massapequa High School with Wendy McVicker. She was very shy. In October I attended my 50th high school reunion. On the Roster, Wendy McVicker Wagner’s email address was listed as, iwillnotwhisper@hotmail.com. I smiled and thought, “Wendy found her voice.”

Actually, Wendy found her voice 35 years ago after she sustained serious spinal cord injuries that left her permanently totally disabled. Fighting for her own medical care in the Workers Comp System, she began fighting for others, first for medical, then promoting awareness, changing perception, facilitating barrier-free compliance and spreading accessible facilities throughout Long Island and other areas. She worked with malls, universities, libraries, municipalities, hospitals, retail and fast food chains, schools, small business, medical offices, corporate executives and legislators. She had a Variety Show for access, attended by 800 people.

In 1996 she chose to help the Village of Southampton. She wanted disabled individuals in Southampton to enjoy some of the same independence she had given others. For the next 15 years Wendy worked side by side with Douglas Murtha. She designed and implemented the Village of Southampton Access for the Disabled Program and led the Village of Southampton Committee on Access and Disability. She made the Village of Southampton the first accessible Village on the East End. She worked on Village Hall, the Police Department, Rogers Memorial Library, the Veterans Hall, the Cultural Center, Southampton Hospital, Agawam Park, handicapped parking, curb cuts, walkways, traffic lights, ramps, beaches, telephones, and rest rooms.

During Hurricane Sandy, Wendy’s house in Seaford was severely damaged by a sewage surge that destroyed her furniture, belongings and medical equipment. Her Flood coverage was only $14,000. FEMA has only given her $5,494.35 for home repairs that are estimated at $100,000.

Wendy has over the years, unnoticed, made amazing changes that have impacted the lives of thousands of disabled people every year, with no thought of personal gain. As a matter of fact, throughout her advocacy, she has paid for all office and printing supplies, postage, gas, and repairs to her car and wheelchairs, herself. Some people say she is the most selfless person they know, others say she must be crazy. But everyone agrees, she has left a wake of change and good deeds unchallenged.

Please find a way to help Wendy, who has never hesitated for a second to help another, to restore her house and go home! Please contact her at iwillnotwhisper@hotmail.com or 2401 S. Cedar Street, Seaford, NY 11783.

Sincerely,
Robert E. White
East Hampton

Hotel Room Appeal submitted to FEMA. 12-29-12

FEMA
1-800-621-3362. FAX. 1-800-827-8112
DisasterAssistance.gov

Fema I.D. No. 41-1371304
Subject: URGENT. Long-term Housing
Medical Condition: Spinal Cord Injury with Severe Autonomic Dysfunction, Cervical Myelopathy, Costochondritis, Intercostal Neuritis, Occipital Neuralgia, L-S Radiculopathy, Multiple Disc Lesions, Post Traumatic Neuropathy. Pulmonary Fibrosis.

To Whom it may Concern:

On October 29, 2012, i was a permanently disabled individual, severely limited by symptoms of a spinal cord injury sustained 35 years ago, fully functioning within the closed environment of my home, set up to accommodate my specific physical needs. I was in intractable pain. I used an electric wheelchair, oxygen, a service dog, and was in a hospital bed 80-90 % of the day. I was an ADA/Disability Advocate of 35 years, who has facilitated amazing changes for disabled individuals.

As you can imagine, the sequence of events since the sewage surge hit my home have caused me great physical pain and functional disruption. I slept in my car for 10 days. Then I was able to get into the Best Western at Bar Harbor on Sunrise Highway in Massapequa Park, NY. I have a room with a bathroom and parking outside the door. My oxygen is set up here and my physical therapist visits twice a week for 2 hours each session. I am warm and comfortable. My home was set up like this. I cannot function in an apartment.

I have been told by numerous persons within the system that Fema has the capability to allow me to stay here at their expense, because of my special needs. I provided two medical reports to the Fema Inspector. If these are not in my file I will fax them to you.

I am asking Fema to allow me to stay at this hotel, where I am comfortable and my needs are being met, until my severely damaged home is restored and livable. Please take this request seriously, because there is no way I can fit into the housing standards set up for able-bodied individuals pertinent to Disaster and Recovery. Be assured that I am highly motivated to recover the level of comfort, functioning and productivity I enjoyed prior to October 29, 2012. With your validation of and cooperation with my special needs, I feel that will happen.

Thank you sincerely for your consideration and anticipated help.
Sincerely,
Wendy Wagner

********FEMA consistently refused to answer this Appeal, although I was told repeatedly that it was being considered.

Letter to President Obama. 12-18-12

Dear President Obama,

I sincerely hope that you will read this letter personally and realize there are faces on the victims of the flood surge of Hurricane Sandy and that our needs are not being met.

On October 28, 2012, I was a profoundly disabled woman living alone with my service dog, in a neighborhood in Seaford, Long Island, not on the water or even close by. I have Spinal Cord Injury with Severe Autonomic Dysfunction (which means it affects all involuntary functions, such as heartbeat, breathing, swallowing, temperature control, etc.), Cervical Myelopathy, Occipital Neuralgia, Costochondritis, etc. etc. 3 lobes of my lungs are partially collapsed. I am in a hospital bed 80 percent of the day because I can only sit up for 2 hours and can never lie down. I use an electric wheelchair and oxygen concentrator. I am in intractable pain 24/7. I have had 27 malignant melanoma.

Despite all this, I have built a life of incredible advocacy and consultancy for disabled people that has spanned 35 years and allowed many many thousands of people to live more accessible and equitable lives. All of my files were destroyed by the sewage surge that tore all of my furniture, belongings and $50,000 in medical equipment from my home on October 29, and made it unlivable and hazardous to enter. I lost everything. But what I lost most was a comfortable nest in which I could function. I lost control of my own life.

I stand before you destitute, with nothing but my good works in my arms, stumbling about in a Disaster Recovery Program that has no place or compassion for Disabled Individuals, and I beg you to see me and to listen to us. We are being dismissed!

WHAT I NEED IS INTERVENTION. For 10 days after the flood I, with SCI, slept on the floor or in my car. I lived on a half a roll a day and a half bottle of water. Food, gas, and housing were non-existent.
After 10 days I found a hotel in my area, Best Western at Bar Harbor in Massapequa, NY. They have agree to let me stay until December 9, 2012, after which I have no place to go. The problem is, that while I am Approved for Hotel Assistance, Fema said this hotel is not on their List. The list they are using seemed to be from a former hurricane, and the woman was trying to send me to locations 2 hours away. She finally settled on two, Farmingdale, 45 minutes away and Freeport Motor Lodge, on the water in the devastated Flood Zone. I can only sit up for 2 hours and need a hotel close by.

I am located presently, after some effort. Housing and hotels are extremely scarce. I cannot go to a shelter and I can provide medical documentation for this. My needs are being met here. I am near people and medical personnel who know my rare medical condition. And I am close to the home where I need to take care of insurance and other business. No insurance has visited my home yet.

Fema has not said they will pay for this facility. My out-of-state son has it on his credit card but cannot much longer. The daily cost that Fema is allowing for hotel assistance is $143 with taxes, This hotel is only $112. I AM ASKING YOU, President Obama, TO PLEASE HELP ME TO GET FEMA TO APPROVE PAYMENT FOR THIS PARTICULAR HOTEL. PLease help!

It looks like although I had $400,000 in insurance coverage on my home, because it was a flood I am going to get only $14,000 for my home, furniture and all its contents. Devastating. I find myself wishing I had died in the hospital bed that burned up in the storm surge. I am in such physical pain. Land rapers are already trying to buy up our devastated homes for the land. I find myself wondering how in my wonderful America, insurance companies could be so overindulged and homeowners could be so victimized, first by the storm and then by the system. I have been living below the poverty level on $10,000 from workers compensation for 35 years, and there is no way i can rebuild my home without help.

I sincerely appreciate your anticipated help. I have experienced no help or compassion in the systems. God bless you. wendy wagner, 2401 South Cedar Street, Seaford, NY 11783

***THIS LETTER NEVER RECEIVED ANY RESPONSE.

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.

FEMA Raid 1-11-13

FEMA Raid. 1-11-13

I awoke to a post-Sandy day, with the weight of the world lying on my chest. Yesterday was the day FEMA was supposed to announce if displaced Hurricane Sandy victims would be allowed to stay in Hotel Housing or be thrown into the cold January streets. But typically, FEMA ignored their own deadlines and left thousands of bedraggled victims packing their paltry belongings, in fear.

I, in addition, submitted a written Hotel Room Appeal based on my severe disability, which they had been ignoring for six weeks, claiming it was “In Process, No Decision Available.” And then there was the call from a representative on the 28th: a badgering, angry, harassing lady from FEMA. She told me: make a plan and get out by the 12th; hotel staffs have been instructed by FEMA to remove all FEMA recipients on the morning of the 13th; the Hotel Program is over; your Appeal will not receive any answer because the Hotel Program is over; even if the Program were extended, you will not be allowed to stay; so get a plan and get out or you will be removed; if you cannot go to an apartment, we can put you in a “facility.” What a lot to digest after I was just told at Cedar Creek Park FEMA that I was approved until the 12th and it would be automatically renewed: and by the Special Needs housing Hotline that, due to the condition of my house, I was evaluated to need housing for at least 6 months. I pondered why this government agency was so inefficient, inept, and unable to accomplish an organized mission with their fractured staff of roaming trainees.

I noticed that the local television station that ran an interview with me on the 8th about FEMA’s January 12th deadline, was running clips of the interview, saying that we were all still waiting for an answer whether or not the Hotel Program had been extended. I watched for updates all morning, until my ride picked me up.

I went to the store to get totes to carry my post-Sandy living tools to the car when they threw me out. I had told News 12 that I would request a policeman. As a disabled advocate of 35 years, I was not going to allow FEMA to throw a severely disabled cancer survivor into the cold January streets without legal recourse. Perhaps I was facing the American’s with Disabilities challenge of my life. At the least, I was facing a moral travesty in this event dubbed SuperStorm/NationalDisaster Hurricane Sandy, that had rapidly turned into a National Tragedy!

I had, sadly, learned to be tentative and distrustful since the Super Storm had washed away my life. Nothing was as it seemed: the seams were on the outside, sweet was sour. Life, was walking on railroad tracks, with the third rail braided expertly throughout the steel. Nothing was soft anymore.

I moved about all day in a fog of uncertainty: knowing I belonged nowhere. The stores were full of people who didn’t know me and didn’t see my wounds bleeding through my clothes. I was alone in a world full of people with destinations.

Arriving back at the hotel at 1:45, I put the card into the lock and the door opened: I was not locked out: I was here for another night! Inside I found a barrage of informed electronic sources letting me know that the Program had been extended by the Governor for another 2 weeks. Delayed, but not resolved. I put the television on and saw myself smiling as newscasters announced that the Program had been extended. I harbored cautious relief. I fed Pollyanna chicken from Kentucky and settled down with my iPad and my puppy by my side: to try to decompress. There were phone calls and emails from excited well-wishers who didn’t understand how long is two weeks. I went with the flow, enjoying my temporary reprieve, trusting nothing.

I finished a turkey sandwich. I craved meat all the time now and really didn’t get much. Writing on my iPad with a crumb-filled plate on the bedside table, there was a knock on the hotel room door. I was startled. At home, everyone knows not to come to my door unannounced, especially at night. I looked out the window, recognizing the woman from the front desk. I wondered why she had not called first, as they always did. She spoke through the window.

I opened the door a crack and she said, “These people are from FEMA, to see you.” They looked like me, rumpled and crumpled and worn, with intense faces. I was dumb. They entered quickly, portfolios in hand. There were ID’s swinging from their necks, but I really don’t remember anything except “We are from FEMA.” The desk clerk disappeared. We were alone. Later, when I said they didn’t show me an ID, they each came over to my bedside and showed me his/her dangling tag. I asked why they didn’t call first, and they said they called the hotel.

There I was alone after dark with two wandering facilitators of FEMA’s broken system, beneficiary of a surprise visit. They claimed they were here to help me, by offering alternate options to this place I was now housed within. They obviously thought I was stupid. I knew that meant that they were here to convince me to go elsewhere. Tomorrow was the deadline FEMA had given me to get out, and she told me even if the Program was extended, I was out. She told me they would remove me or “put you in a facility.” I wondered if they were authorized to remove me bodily. I was very afraid. I wondered if I should call 911.

They asked me for several documents that I had submitted many weeks before, and ones, I was told at Cedar Creek Park, already existed in the FEMA computer. They made lots of excuses about not being able to do this or that, because they did not have documents, or authorizations. It turns out these people were so badly misinformed about me by FEMA, they thought I was undocumented and uncooperative, when actually, all of my paperwork had been in for many weeks, some submitted multiple times. FEMA’s practices and procedures, document security and, information dispersal are so dysfunctional as to make progress and resolution totally impossible.

Then they started talking about places I could go besides here and agencies besides FEMA, that might help me. They said there is a limit to FEMA aid and the services it covers. I said it said on television that the Hotel Program was extended. The woman said, “Oh, the television said you could stay.” I got very upset and said, “I think I need a lawyer, I want you to leave.”

I called my son. I emailed an official. Everyone was calling someone. Phones were ringing, everyone was talking to someone. Everyone was confused and frustrated. I wanted all the questions, all the mistakes, all the bureaucratic nonsense to stop. I was so tired. The only thing I was certain of was that they came to convince me to leave. I was very frightened. I couldn’t breathe from turning my head to the right. My hospital bed at home does not allow for anyone to stand on my right-hand side. The man said, “Are you all right?”

I said, “I can’t breathe.”

Phones fell to the bed. There was oxygen. There was quiet.

My son asked them to leave. The woman packed her portfolio and backpack and walked to the door. I was very afraid. I told them I just want to stay here. They asked me why. “Maybe we can find a place like this somewhere else. I said, “I just want to stay here. I can function here.” I wanted them to leave me alone. I wanted my sweet home.

The man said that if I absolutely refused their options, I could write a paper saying I want to stay here. They said if I didn’t write a paper saying I need additional housing, I would get none. They told me what to say. I wrote it down.

During their visit, velvet words had peeled effortlessly like an onion skin, to reveal layer upon layer of insidious motivations. I no longer feared the aggressors who raided my safe solitude with an agenda, so easily revealed. I was tired of inept FEMA: inaction, denials, lost papers, stalling, misrepresentations, denying responsibility, threats, information so amorphous as to become lies, help so unrealistic that it becomes harm, ludicrous decisions. I longed for someone to trust. I watched FEMA walk, calm and reassuring out the door. I knew it wasn’t over.