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.

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.

Destruction – Photos after the Sewage Surge. 12-17-12

Disabled During Disaster. introduction.

Disabled and Homeless. Please help rebuild my destroyed home after Hurricane Sandy.
Wendy Wagner