Letter to FEMA on Denial of Reasonable Accommodation. 12-27-13

Federal Emergency Management Agency
Joint Field Office / Hurricane Sandy
Federal Coordinating Officer / Disaster Recovery Manager

RE: Reasonable Accommodation in Temporary Housing

December 27, 2013

Dear Federal Coordinating Officer:

As you are aware, FEMA stopped paying for my temporary housing, despite Stafford Act Protections for disabled individuals, on September 15, 2013, when they removed all able-bodied individuals from Hotels, ending the Temporary Housing Assistance Program.

As you know, xxxxxxx xxxxx, your predecessor, repeatedly committed to keeping me at this hotel, renting this room under a Direct Lease Program, if the TSA Program ended, until I could return home. I had personal conversations with Xxxxxxx and Xxxxx xxxxxx on this: he designated a “team” specifically to work on my case. They were the only FEMA allowed to speak with me: he removed all my personal information from the system. I was not contacted again until xxxxxxx xxxxx was leaving FEMA in June 2013 for a job with a different agency.

I am still in a hotel solely and exclusively because FEMA missed Substantial Damage in their Inspection of my house and gave me an unreasonable repair grant of $5,035 for my substantially damaged, and now toxic, house.

You have read my medical files, documenting medical limitations and hazards: why I require special options and consideration in housing. Let us be clear, my home accommodated all my needs: my home is not available to me now! I am adjudicated permanently totally disabled for 36 years and the grave implications of my unusual condition are voluminously documented. Despite this information, FEMA removed me from Temporary Housing Assistance at the Best Western Hotel: and, against my will, forced me to the DHAP/HUD Program. DHAP/HUD claims I am not their responsibility: I am FEMA’s responsibility, repeatedly refusing to help me in any way whatsoever. DHAP/HUD, like FEMA, is completely unprepared, unwilling and it would seem unable to deal with special needs, special circumstances, or disabled individuals: dismissing, denying, placing a whole class of people in terrifying jeopardy.

I filed two housing Appeals: to FEMA. The first was filed exactly as FEMA Agents told me to do, on 12-29-12. It has been posted on the internet since 2012 and repeatedly discussed with FEMA. An Appeal was filed by my attorney on August 22, 2013: a 504 Request for Reasonable Accommodation. Neither Appeal was answered. After assuring me the proper people were working on it for months, FEMA finally told me of the first appeal, “We do not answer Appeals. A non-answer was received on the 504 Appeal, saying if I attended DHAP Orientation FEMA “might” consider it. I did so. There has been no response from FEMA. However, I was told that FEMA flipped the 504 responsibility over to HUD. HUD is ignoring me.

BE Advised:

-FEMA has extensive medical documentation that it is hazardous to my health to relocate me to an apartment.
-I paid the hotel bill for the past seven weeks. I am out of money.
-The Rental Assistance/Transient Accommodations grant issued on 11-30-12, in the amount of $4,695.34 (which I tried to return to FEMA Agents at Cedar Creek Park 4 times and was rejected with. “We know you have related expenses. That is your money.”) Was exhausted on Temporary Housing. You have that documentation in your hands.
-I am participating in the BuyOut/Acquisition Program of NY Recreate. I was told several months ago that Resolution would take 2 to 6 months. I have no control of their timeline. The alternative to a BuyOut of my Substantially Damaged, Toxic house would be NY Rising Rebuild Program, which would be a hardship for me to begin after 14 months of futile repair attempts on a home that floated off its foundation and must now be bulldozed and elevated 12 feet.
-I was told by your legal department through Mr. Xxxxxxxx, by Xxxxx Xxxxx and Xxxxx Xxxxxxxxxxx, that there is $8,600 in my FEMA file (because you miscalculated repairs on my totaled house), available to me, that can be used for housing and has been provided to others for this purpose. I request this money to pay my Hotel bill now, committed to and implemented by Xxxxxxx Xxxxx and his Disability Team as Reasonable Accommodation from January until June of 2013, when he left FEMA for employment at a different Agency.
-I have sent Hotel receipts. I expect those bills (in excess of the initial $4,695.34 grant I exhausted at FEMA’s direction) to be reimbursed in a timely manner and my housing at the hotel to be paid from the $8600 withheld by FEMA on my totaled house, pending NY Recreate Buy Out.
-Note: Under the Stafford Act you are not supposed to charge the disabled person for temporary housing.

Please do not compound this horrific sequelae by again putting the blame on me, for still being in a hotel. I am here solely because FEMA failed to identify substantial damage, validate and deal with disability compliance, follow protocol, answer voluminous, properly directed complaints, or to act in a timely manner. I have been injured and scarred by FEMA’s lack of response. I am asking you now to demonstrate good faith: to cease and desist distributing outlandish letters with a litany of falsehoods to officials, falsehoods that can be expeditiously disproven. You have wasted so many people’s valuable time and effort with this frivolous, cavalier tactic. I am reluctant to believe that FEMA is that incompetent.

When we make grave mistakes, it is most facilitative to admit them and try to mitigate the consequences in an equitable solution. Without a doubt, FEMA, DHAP//HUD are making a mockery of disability and literally killing disabled people, because they don’t know what to do with us. I have seen too many of my disabled friends die because of the way they were treated in this disaster system. Don’t make my beneficiaries litigate this case!! Be assured that I have tried, and will continue to attempt, to settle this matter amicably.

Let us work together to rectify the devastating consequences that the Disaster systems have visited upon myself and the disabled community. Disabled people should have been the first population sent back home, not the last.

Sincerely,
Wendy Wagner

cc:
Senator Charles E. Schumer
Senator Kirsten Gillibrand
Senator Charles J. Fuschillo
Congressman Peter King
Congresswoman Carolyn McCarthy
Assemblyman Brian Curran
Assemblyman Harvey Weisenberg
Legislator David Denenberg

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FEMA Housing Horror. 12-17-13

12-17-13
President Barack Obama
White House
1600 Pennsylvania Avenue, NW
Washington, DC 20500

Dear President Obama:

I know that you are a father, and you have demonstrated that you have compassion for children. I was somebody’s daughter. I am imploring you to help me as you would wish someone to help your own daughters.

I am a severely disabled SuperStorm Sandy Survivor who is being discriminated against on the basis of my disability in temporary housing. On Saturday, I am due to be put out in the cold for Christmas.

I have enclosed for your information my 3 page letter to U.S. Senator Gillibrand, which explains the chronology of the problem. I have also enclosed the letter of Substantial Damage on my house issued by the Town of Hempstead. FEMA completely missed the substantial damage and grossly miscalculated the cost of restoration of my house, which is the sole reason I am still homeless and begging my president to help me.

FEMA refuses to communicate with me in any way because I filed a Civil Rights Complaint. They refused to answer my 504 Appeal, saying they don’t answer Appeals. The Department of Justice will not help me, saying FEMA has complete jurisdiction. FEMA forced me to sign a DHAP paper against my will and turned me over to DHAP, which has steadfastly refused to consider my special needs and refuses to keep me at the hotel, saying it is “illegal.” They have tried in no way to help me.

I am asking for a Congressional Investigation of my case and the unwillingness/inability of the Disaster Recovery Programs and Agencies to help me as a disabled individual, and the harassment, abuse and pain I have endured because of their inadequacies. I wish to testify before Congress.

Thank you very much for your consideration and anticipated assistance.

Sincerely,
Wendy Wagner

December 14, 2013

Honorable Kirsten Gillibrand
United States Senator for New York
780 3rd Avenue, suite 2601
New York, NY 10017
Fax: 866-824-6340

RE: Discrimination on the Basis of Disability by United States Federal Disaster
Assistance/Recovery Programs, Policies, Practices, Agencies
Attention: Sandy Relief

Dear Senator Gillibrand:

I am a severely disabled SuperStorm Sandy Survivor who desperately needs your help.

To summarize: I was notified on Friday, December 13, 2013 that I am Officially Denied participation in the DHAP/HUD Housing Program that is available to all able-bodied SuperStorm Sandy Survivors. In addition, FEMA refuses to answer my 504 Reasonable Accommodation Appeal. This is my second appeal for Temporary Housing/Hotel Reasonable Accommodation. I was informed of the first appeal, “We never answer Appeals.” I am told FEMA flipped this Appeal over to DHAP: DHAP cut me off because I am pursuing Reasonable Accommodation for my medical limitations.

**Next Saturday, I will be without a place to stay. I need help by December 21, 2013.

I have been for 14 months discriminated against by U.S. Disaster Recovery Programs and Agencies solely on the basis of my disability: even though they have my medical documentation, and are informed of the serious medical implications.

Before the flood, I was in a hospital bed all day due to Spinal Cord Injury with Severe Autonomic Dysfunction, with serious medical implications. I was functional: a disability advocate and ADA Consultant for 36 years. I require an electric wheelchair, oxygen and traction equipment, and a deep water therapy tub. I lost $50,000 in medical equipment, my home, and all my belongings in a SuperStorm sewage surge.

I began staying at Best Western at Bar Harbour in Massapequa Park in November 2012, after my home was totaled. This was the only place I found where I could function independently. It is close to my doctors, medical care, and my support network: my physical therapist treats me here, oxygen and medication are delivered.

Immediately, FEMA sought to remove me from the hotel, denying payment. They sent two agents to my room after dark to convince me to leave. I had to call for help to get them to go. When I did not attend a Housing meeting, they reported me to Adult Protective Services: I was followed around and threatened with police action for weeks.

Wendy Wagner. RE: Discrimination on the Basis of Disability

At that time, my house was estimated at $105,000 to restore. FEMA inspected it and awarded me $5,400 for repairs, telling me I could do it with that and “free help.” There was no free help. I remained homeless through inadequate funding. FEMA also failed to recognize my home had floated off its foundation, sustaining “substantial damage.”

In January xxxxxxx xxxxx and xxxxx xxxxxx of NYS FEMA designated a “team” to work with me. Mr. xxxxxx told us with witnesses that I would be kept in this Hotel room as Reasonable Accommodation under a “Direct Lease Program worked out by our Legal Department,” I trusted him. All of my information was removed by them from the system and everything was fine until May.

In mid May, xxxxx xxxxx and xxxxx xxxxxxxxxxx began harassing me: showing up at my room unannounced, telling me I must leave the hotel. xxxxx asked the Town of Hempstead Building Department to inspect my house, telling me if the report was conclusive, she would get me “total,” $31,900. Then I would be allowed to apply for the Empire State Grant. However, when the report came back that my foundation was “substantially damaged,” she said, “”You are getting not one penny more.”

They claimed the Transitional Sheltering Program was ending and I had to leave the Hotel or be removed. I informed xxxxx and xxxxx I had an agreement with xxxxxxx xxxxx for a Direct Lease of the room. They laughed at me: until one day they told me to call him. I made an appointment. When I called, he had an army of 13 advisors in the room, including 3 Legal Counsel. He said he was leaving FEMA on Friday, and that NYS never implemented the Direct Lease Program for this disaster so the “Gentleman’s Agreement” (“I don’t need to put it on paper. I am a man of my word.”) was leaving on Friday with him. There was nothing he could do.

Immediately after Mr. xxxxx left, I got a harsh letter from xxxxx xxxx, the tyrant who replaced him. Over the next weeks, he bombarded me with ever-changing demands to sign various agreements that I would give him multiple concessions in return for 90 days at the Hotel. Immediately after I finally signed an Agreement under threat of being thrown out “tomorrow morning,” Mr. xxxxx declared the Agreement was invalid, because I “do not have all of the building materials to restore the house in the yard at this time..” He demanded I sign the DHAP Agreement or he would throw me out of the hotel now.

xxxxx and xxxxx threatened. xxxxx called, over two weeks, with, “I don’t want to put you out in the street, but I will.” If I did not sign the DHAP paper “today.” Every day was the “last day” deadline. On July 16 xxxxx showed up at my door against my wishes.
She would not leave until I signed all DHAP papers. I was crying. She assured me that DHAP would keep me at the hotel: they had all my medicals, executives were briefed, and “They cannot find appropriate accommodations, so will have to keep you here.”

Wendy Wagner. RE: Discrimination on the Basis of Disability

Later, I was told by FEMA that if I attended the DHAP Orientation, FEMA would “consider the Reasonable Accommodation Appeal.” Two men from DHAP conducted it in my Hotel Room. One said they could keep me at the hotel, the other said he was not sure but he could see why they needed to. When I heard nothing, I called Ms. xxxxx. She said they will not keep me here, it is “illegal,” and said I must deal with xxxxxxxx. I called xxxxxxxx and she parroted Ms. xxxxx. After repeated negatives from her, I said, “So you are going to do nothing to help me. She snapped, “What did you say I said?
I didn’t say that!” I said, “You implied it.”. She said she would inquire. I never heard.

On September 15, 2013 the TSA Hotel Program ended. United Way paid for my Hotel for 6 weeks. I paid for the hotel for the past 6 weeks: the money runs out on Saturday.

I was informed if I did not again sign the Family Obligation form I signed in July under duress with xxxxx, they would cut off my eligibility for DHAP. Two weeks ago I modified that form for handicapped and faxed it to DHAP. They refuse to accept it. Friday I was “Officially” denied DHAP. They never ever tried to help me or accommodate my disability in any way. FEMA abandoned me, breaching Stafford Act protections for disabled individuals.

The reason I object to signing the DHAP paper is because it specifically states that if you sign and then do not chose to stay in the Program, you are barred from returning to any FEMA Program. I have two Open Appeals with FEMA pertinent to Temporary Housing Denial and Harassment. The agencies are collaborating to protect each other.

I am enclosing my medical reports and asking you to please help me. My “substantially damaged” house is being considered for Acquisition by NYS or Bulldoze/Rebuild by NY Rising. Thank you sincerely for your help.

Best regards,
Wendy Wagner

cc: President Barack Obama
Congressman Peter King
Congresswoman Caroline McCarthy
Senator Charles Fuschillo, Jr.
Senator Charles Schumer

My Toxic House – Substantially Damaged. 11-29-13

My Toxic House: Substantially Damaged. 11-29-13

It is a location, a place where you belong. Where nobody can take your pictures off the wall. And when it is suddenly torn away by a vile and violent cyclone, and systems and people hammer at you that you do not belong, pull the blankets from under you as you sleep, you hold tight to the polluted soil of your own sweet land.

I sit on my land every day, by my home of 48 years where I raised my sons, now a gutted, toxic death-trap. I sit in my accessible van that no longer functions as it should, because it is packed tight with suitcases, winter blankets, food and living necessities. I cannot use the mechanisms of the access seat. It is blocked and impotent by the trauma of my life.

The land grows dark. I sit still in my van with my service dog Pollyanna in my arms, staring at a fading rock garden that I carried stone by stone from forests, beaches and mountain streams: now raped by looters stripping what is left of me. My face and blouse are soaked with tears flowing from eyes never dry these days. Pollyanna licks the salt away. Eventually, she tires, rests her silky head upon my sobbing breast, then slides onto her fleecy coverlet, exhausted from comforting the inconsolable.

It is so hard, impossible, to function: and it is impossible for able-bodied people to understand problems they have never experienced. But for me, it is my new, horrific, terrifying reality. It is beyond my comprehension that a life that was so manageable, is now so hideously out of control. I am thrust into a world where I am an alien, a freak: a world of systems and people that have no tolerance for difference, for pain, or those who use equipment. I am so lost: isolated. I walk through a dark, bleak, compassionless wasteland that is life post-Sandy, alone. I am alone!

My neighbors approach me, as I weep in my van, with, “Bulldoze the house and leave. You are bringing down our property values, because your house is still obviously storm-damaged. We want people to forget this neighborhood was flooded, so we can sell.”

It hurts to be dismissed.. But, I understand property values, and wanting to forget, to go on. Beyond that, I understand that I am a metaphor: a visible reminder that it can all be gone in a moment: your home, your health, your life. I hate that people now see me for my inadequacies. I was such a productive, appreciated person before Sandy: making unprecedented differences for disabled individuals. How fragile are our roles in life. How fickle is the cruel fist of fate.that turned a massive cyclone to my yard.

With my house, it did not happen all at once. It has been a slow process of loss, upon loss, culminating in my house sucking the breath from me and leaving me unconscious on the floor.

In the beginning, all the insurance adjusters who inspected my house said it was “totaled” by Hurricane Sandy. They were empathetic to the $50,000 loss of my accessible equipment and environment, but powerless. I had $300,000 in homeowners insurance: $100.000 contents. I only had $14,600 in flood insurance, because I did not live near the water and that was the policy my agent gave me. I received the flood insurance and $275 from the Homeowners Policy, for food spoilage and a front door bashed in by the wind. It was leveling.

In the disaster equation, if you had any flood insurance, it hurt you with FEMA. Survivors say that rather than being rewarded for doing the right thing, paying premiums: those of us who did, were “punished” and those who did not were reimbursed many times more, for the same loss. This was just the first of a litany of puzzling realities and inequities in the disaster repair/restoration marathon.

Initially, all estimates said it would cost over $100,000 to restore my house, before discovery of the foundation damage. FEMA never validated Substantial Damage to my house. FEMA inspected my house and gave me $5,000 for repairs. What could they be thinking!!

My house was now gutted, but there were still gross brown stains where feces spilled out of the toilet bowl, slithering through bedrooms and living room, and sewage bashed in the metal front door, splattering its imprint into my cement front porch. Mold crept deep into the walls, floors and floated visible in the acrid air. My house was initially sprayed for sewage and mold. It was declared safe. Six weeks later, a Mold Expert consulted, reported the house must be “Shocked,” then scrubbed down. Eight men cost me $4,000. He said it was the only way we could be sure the mold would not return. Afterwards, the house looked spotless.

In June I got the first indication that there was structural damage to my house. FEMA requested an inspection of my house by the Town: an inspection denied in November because Town inspectors said the house was “contaminated” and they could get “Hepatitis”. But in June, FEMA Program Directors claimed if the inspection revealed substantial damage, they could award me total: $31,900. Then, I would be allowed to apply for the Empire State $10,000 Grant. They assured me, “We accept a Building Department report over our own.” However, when it validated structural damage, foundation damage, FEMA declared, “You are not getting one penny more!”

White cottony puff-balls floated through my gutted house and clung to the walls. It was sprayed again for mold. In August, after further demolition of the walls and removal of objects and insulation from the attic suggested further contamination, the house was “Shocked” one last time and scrubbed, to death.

On September 20, 2013, I entered my gutted house, dreaming of holidays at home and pretty colors. How could I know a malevolent force had taken up residence in my personal space, and made my home a deathtrap. Insidiously, it overcame me, the polluted air. As I became increasingly dizzy, I did not notice my eyes swelling, my throat closing, until severe stomach pain doubled me over. Nausea and headache overwhelmed me. I could not breathe. My head, my face: the pain. I could not get a breath. Darkness slashed me to the ground as I passed out smothering in sweet yesterdays, gone bad.

For days I could not move my head, from excruciating pain in my face. I developed respiratory infection and rashes. Pollyanna woke up the next morning throwing up bile. She gasped and struggled for air all night. I sat outside my hotel room giving her oxygen and holding onto her life all that long dark night: I would not let her go. My doctor said, never go into that house again. It was terminal.

NY Rising, Governor Cuomo’s loan-to-grant Program touting restoration help for Sandy Survivors, sent me a letter offering a $145,000 Loan-to-Grant to “Elevate and Restore or Bulldoze and Rebuild” my house. I inquired, and like other homeowners, I was told it was not enough: it would cost at least $200,000. It is about $100,000 just to elevate the house. Also, the Program requires that the homeowner own and also live in the house for 3 years after receiving the loan, for it to become a grant. Many homeowners want to rebuild to recover equity in the house, and sell. The goal of this Program is to repopulate the land and revive devastated neighborhoods.

Now, I was being told that I had to elevate my house, repair it, and live in it for five years in order to forgive the debt, and that a ramp to that elevation would go around the whole house. Floodplain codes and costs for piecing my tattered house back together were making returning home increasingly impossible, for the lady in the wheelchair.

I told everyone I wanted a meeting with the Governor. There was a New York State BuyOut Program for totaled houses. But they were presently only considering clusters of houses and houses on the shore. Mine was neither. But, I felt my house qualified, except for the cluster and shore rules. And, I had observed that some Programs were being modified as time passed and justification became clearer. Then, after I passed out in my house, amazingly, I heard that they might be considering individual homes for BuyOut.

Be careful what you wish for! Considering a BuyOut is bittersweet, at best. In addition to the loss and trauma of the decision, the NY Rising Program airs commercials stating, “We are New Yorkers. We are stronger than the storm. Our communities are rising, better than before.” They make you feel like a loser because you are never going home: like you are giving up. In reality, there are few choices in this disaster equation: only best worst options.

NY Rising is a vendor-based Rebuild/Rehabilitate Program. That means, the State designates a fixed ceiling of money to be paid to contractors not homeowners, to restore your home to the same footprint, at basic quality, using new building and flood codes. The Program is faulted and disorganized: it is being designed in progress; rebuild allowances are unrealistically low; contractors are being paid in unfair increments, so many will not participate; and payment is extremely slow (Only 4 of 4,000 applicants have to date received any payment on their house.). It is a loan to grant program: the homeowner must own and live in the house for 3 (originally 5) years before it becomes a grant.

The BuyOut Program is called NY Recreate. NY State will purchase shoreline and high-risk houses at assessed value before the storm. This land is no longer habitable and may be used for parks. It was originally offered only to clusters of homes. Presently Buy Outs are only offered in Suffolk County. Recently certain individual “substantially damaged” homes are being considered for “Acquisition.”. The cash amount to a homeowner is low, but better than the un-repaired market value post-Sandy. The problem with this Program is that the “sale” price is not enough to replace the house with a similar house, in the same geographic area. Homeowners are devastated by the loss of place, often Long Island.

After 13 months of very intensive work, of being denied, and passed over by every program and charity, and putting $23,000 in repairs into my house, my house was overcome by chemicals and died a horrible death, leaving me stranded in the cold, cruel season of Good Will to All men: sitting on a building lot demolished by ax-slinging maniacs by mistake. When well-meaning people wish me a “Happy Holiday,” I wonder why they cannot see me bleeding.

NY Rising and NY Recreate require a Letter of Substantial Damage to proceed. This became my first clear definition of what was wrong with my house. Surely if I had this information when FEMA inspected my house, when they insisted that I put the heating system and electric in, I would have made different decisions.

“It was determined by inspection by the area building inspector that the floodwaters reached an average of five to six feet around and in the home. The water inundated the sub grade crawl space resulting in the entire building being shifted off the foundation and in some areas actually washing away the existing masonry blocks. The damage to the foundation and floor joists of the home has resulted in deflections many structural framing elements. The entire dwelling has shifted off the foundation. The Department of Building has therefore determined that the dwelling has been substantially damaged….”

I do not live on the water, or close to the water. But my house is slightly south of Merrick Road, on land that was once marshland. We never even got water in the street, unless leaves block the storm sewer: you rake them away, the water is gone. I would have been in my house, in my hospital bed that went on fire, with my service dog, if my sons had not nagged me out of the house. How vulnerable our decisions make us.

So there it is in black and white, on the day of SuperStorm Sandy, October 29, 2012, my house was fatally injured by a post-hurricane cyclone. I tried to breathe life back into her, but the diagnosis was wrong and she was too weak to survive the timeline of broken systems. On that day, my life was changed by the fickle fist of fate, forever!

Life post-Hurricane Sandy is a nightmare: of failed systems, apathy, toxic houses and substantially damaged people. No one cares about the agony of broken homeowners trying to stand brick on top of brick, in gunk. Everyone is broken in some way, limping through moldy cobwebs, gagging on sour milk. Priorities of programs and systems are gutted structures and paperwork, not people. Every day I wake to the stench of my life now, the reality that today will be worse than yesterday: as my body falls into irreversible loss, medical disaster, invisible to others. The reality of escalating loss is grounding, liberating, empowering.

People strive to regain some semblance of normalcy and financial stability in the horrific scenario called recovery – non-help, inequity. Process, procedure and outcomes shout down humanity. The weak are trampled. As we grow stronger, as the shock of Sandy trauma becomes our new reality, we understand we are our own best help. We are stronger than systems and cruel fate. Men climb up on the rubble of their land, are energized by their own autonomy, and wade through the sewage to the other side, conquerer: stronger, wiser, sadder than before.

Do Not Drink the Sand. 11-8-13

Drowning duck in blue water

It was the end. The final deadline in a marathon of deadlines, that told me, all Sandy Survivors, “You do not belong. This is not your home.” It was the final confirmation of America’s lack of preparedness to deal with disaster and protect her people in time of crisis. Today was terrifying, because it is me they are evicting this time: but it is all of us. I was being thrown out of the hotel, but, in a few months survivors are to be systematically thrown out of DHAP/HUD temporary housing apartments, the second stage of their housing marathon.

The government is not prepared for Recovery. Survivors are pleading to deaf ears, at televised rallies and to legislators, for recognition of unrealistic deadlines.

I had witnessed the others, one by one, dragged from hotel rooms by paid bullies representing broken systems: people hanging on to hotel room doorways with bleeding fingertips. And I contemplated what I would do, when they came to get me.

It was a raw cold day. Once again, I/we were abandoned by every entity of the Disaster System supposed to help survivors return home. I spent my first full day officially without temporary housing, without one phone call from Case Workers, Agencies, Programs, or Charities, inquiring if I was o.k. It was jarring to realize how bankrupt disaster systems ignore, deny and pass over you, and that one can fall from hero to derelict, not by your own actions, but the actions of inadequate, broken systems assigned to help in crisis, that have failed. I floated in a cold hissing mist that numbed my senses and isolated me, the whole long day.

The final deadline was issued via U.S. Mail by the Health and Welfare Council of Long Island on a cold November 8, 2013. The letter was a very carefully-worded legal document, obviously designed to protect the Unmet Needs Roundtable from culpability if their action caused me bodily harm. In a way, it was a relief, to be cut off from their judgmental, unsympathetic consideration: help clearly communicated to me only offered to procure my potential NY Rising Grant.

They picked up my tenure at the hotel on September 15, 2013 when FEMA ended the Temporary Hotel/Housing Program, and FEMA issued a non-answer to my 504 Appeal for Reasonable Accommodation on the basis of my Disability. FEMA’s TSA program had been a series of bullying and threats of eviction every two weeks since Sandy hit. At termination of the TSA Program, FEMA dismissed me with a barrage of internal machinations and misrepresentations, clearly stating they do not validate or respond to Appeals. DHAP/HUD was assigned to provide the next stage of appropriate housing for 12-18 months for all Survivors.

The problem for me has always been that I am disabled, with severe medical and physical consequences, that were completely accommodated in the adapted environment of my home pre-Sandy. It has been hideously difficult and painful for me to be without that environment. I cannot function in a generic space, a high-rise apartment, a basement, a house up to 50 miles away from my medical care, options offered by uninformed, unconcerned case workers. I requested being permitted to remain in the hotel, where I am functioning.

DHAP/HUD absolutely refused to keep me at the hotel, and refused to consider every single viable option I suggested that could accommodate my needs. Still, DHAP threatened since June, that if I did not sign their paperwork (which states that I would then be cut off from returning to FEMA programs) “today, the last possible day” that they would list me as “non-compliant” and close the case. The Red Cross, NY Rising, all the “charities” that got the Robin Hood/Concert donations for the Survivors, refused to consider temporary housing for the lady in a wheelchair waiting for a Buy-Out of her now-toxic house. The world has become a caricature: compassionless officials with pearly white eyes that can not process images.

FEMA/DHAP insisted, “Drink the sand. Drink the sand and we will help you.”.

I said, “I cannot drink the sand. It will kill me.”

They called it cooperation, compliance, but it was sand. I choked down the putrid grit offered by hypocritical bullies, and puked up the bowels of my devastated home. I gasped, tears burning my abraded face, and fell into the muck.

I thought of all the people throughout history eliminated by barbarians because they were weak or disabled: in concentration camps, slavery, war-time death marches, and the man on the hijacked Mediterranean cruise ship thrown overboard in his wheelchair by terrorists..

I said to FEMA, “I did what you asked. Help me to go home.”

They replied, “Go to DHAP/HUD. They will build you a castle.”

I said, “You promised.”

FEMA responded, “Promises are words. We have lots of words. Do you want some more?”

I ran against the fierce, cold wind, sobbing, but I was sinking fast into the shifting sand. I was smothering.

One year post Sandy I hold these truths to be self-evident: that, no men are equal. The weak and infirm hold up the line, are disrespected, left behind, trampled. He who is different must endeavor to be the same and keep up, or be dismissed and exterminated by broken, out-dated systems. Agencies and Programs for helping, are businesses and figureheads, not facilitators. There is no help for those who fall down. If your life was a pillar of good works, no one cares. Individuals do not exist in systems.

Every person could fall down from a freak of nature, through no fault of his own and be dismissed, forgotten, smother in the shifting sands of broken systems. You are on your own. If you give your power away to barbarians, you lose your ability to take care of yourself, to revive. Do not drink the sand. Sand kills people!

Bulldoze the House! 9-28-13

Bulldoze the House! 9-28-13

It is eleven months tomorrow, since my house went down in SuperStorm Sandy, since everything that was my life ended, and life became one dark hotel room that most days I cannot leave because I have become too sick without my medical equipment. Today, I am awaiting answers for new-found, soon to be broken, promises. Brand new requirements and emerging rules are being shoved down our throats, as helpers back off once more, intimidated by bureaucratic intervention aimed at rectifying the initial disaster management mistakes: all this at the expense of the last homeowners still standing un-renovated.

Municipalities and building departments that closed their eyes immediately after the SuperStorm, and let homeowners patch together houses with substantial damage, and inhabit them, are now redefining the rules, erecting insurmountable barriers, and preventing unfinished homeowners from restoring their homes as others were originally allowed, preventing return to home. Agencies are now demanding outrageous expense of homeowners and unprecedented structural modifications: proposing turning our scenic coastline into a grotesque collage of towering cement and staircases. We are told that officials want every house on the south shore of Long Island elevated.

Governmental agencies and hastily-formed committees plan permanent modifications to our land and communities, overreacting, instead of analyzing, evaluating, misunderstanding our environment and Long Islander’s relationship with the land, and the sea. Federal, state, local agencies and charities are conducting chat meetings to discuss the failures of the disaster/restoration process and results, untrained in the task at hand, receiving huge salaries, coffering millions in allocated and donated funds.

The Concert money, donated by well-meaning ordinary people to help their neighbors, is withheld from the neediest, by charities facilitating slow-moving non-programs helping a paltry handful of people. Federal, state and donated monies are eaten by administrative costs/salaries, not filtered to the people, failing recovery.

Gloom moves over the restoration process, as prejudicial treatment of homeowners located on newly drawn flood plains, spreads panic, and threatens destitution, bankruptcy and permanent homelessness. Families inhabiting the wetlands for generations are forced from land their great great grandparents were born on, not by fear or inability to cope, but by new prohibitive government financial barriers, rules and regulations proposed to prevent this from happening next time. Can one really predict how high the tides of the next freak event will rise?.

New York State set up the NY Rising “Grant” Program, that is bankrupting, the neediest. Applying to that Program has become the criteria “charities” are using to give people assistance. The “charities” are demanding to be paid by NY Rising for providing “free help.” People who do not apply to NYRising are summarily refused “free help” and/or materials by charities. NY Rising funds, are charged to the homeowner for five years, before they become a grant. Also, the five-year clause requires that the homeowner not only own the house, but also live in it, for five years after receipt of funds. This way, the State proposes to repopulate neighborhoods and ensure that communities continue to exist. However, the Program is hurting homeowners: because it takes choice away from the homeowner, who cannot freely choose to stay in his home or leave, it allows for no special circumstances, and because no charity will help him if he does not pay them with NY Rising Funds: it excludes him from help from almost every other program. Also, NY Rising is “recommending every home that applies elevate the house,” at a price tag of almost $100,000. Houses on flood plains and low elevation that do not follow the recommendation and elevate, face astronomical flood insurance rates next year.

Programs are staffed by hastily-trained people, operating with cell phones disconnected. Programs are failing the neediest. Charities are stockpiling money and supplies. Everyone gives a different answer: nobody knows nothing. The system is making it impossible for those left standing, withholding Certificates of Occupancy so that people cannot live in their homes or sell them, unless they elevate them. New rules and regulations penalize homeowners on flood plains, and those who have not yet restored their homes. Destitute homeowners are forced to take out outrageous loans to elevate homes they cannot even live in, or walk away from their homes penniless. The Federal government, off nation-building, ignores the financial burden to the Survivors of SuperStorm Sandy, providing little help filtering down to the people of America.

The media has hurt Sandy Survivors . They report that survivors are receiving lots of money from agencies, charities, donations. Most people have received a pathetic pittance: many nothing. The media spotlights a few individuals as enduring glaring hardship. The truth is, some people recovered quickly, because they used their bank accounts, erroneously believing they would be reimbursed. But most people are still living in substandard, hazardous conditions. Everyone is enduring glaring hardship. There is no help for Sandy Survivors!! Survivors need assistance, answers, results and resolution, now, when their children are breathing mold, sleeping in closets and eating ramen noodles off paper plates resting on cardboard boxes, standing up in back yards.

I remember the 1950’s, when there was a cycle of hurricanes in our area. At that time, we had a flood above the windows every two years. We were prepared. We understood our environment and weather patterns, and functioned within its perimeters. We helped each other. Neighborhoods came together.

During Sandy, no one warned communities in time. All the way up the coast, the media and officials told the public, the winds were only 75 mph. They didn’t warn of significant danger until the last few hours. We had so little time to prepare. The public was misled by officials. Officials and government were not prepared. Well into it, they could not even decide how to categorize this storm. The indecision and confusion of officials compromised the public’s ability to respond, react and protect themselves in the havoc.

Given the progressively emerging insurmountable barriers and negatives bombarding Sandy Survivors and persecuting the suffering middle-class homeless, I am second-guessing myself. A shrill voice inside of me scolds, “Who gave you the right to spend a year of your life like this? What were you thinking!”

My only defense is, I thought I could save my home. I thought it would be a month, maybe two. I believed hard work, government assistance, charity, support of community and country, were paths to success. After all, I lived through floods as a child. But that was a different time of community and official co-operative effort. I never imagined that when nature draws a line of demarcation, people do not cross it, and America only helps other countries in need, not her own people. We were all so naive.

When my house went down, my son said to me, “Bulldoze the house! Walk away! You cannot save it!”

I cried. I needed to fight for my home: otherwise, I would be a.victim, victim of a freak natural event. I did not know how to be a victim. I was a survivor of serious injury, cancer, and tragedy. Nothing could defeat me. My house was heavily insured. I paid off my house. I did not know how to be destitute. I did all the right things. I did not know how to surrender. I always won the battles.

Walking out of my stinking, gutted home recently, I said to my son, “You were right. I should have bulldozed the house.” When options deteriorate, choice narrows. Men lose hope: because hope is a bird whose wings fell off.

If I knew what I know now about the disaster recovery/restoration process, if asked to make a recommendation to another in this situation, without reservation, I would say, “Bulldoze the house. You have no idea how bad it can get, progressively, over time. Save yourself!!!”

Beware of Do-Gooders with Axes. 8-12-13

Giving dumbbell to sinking man instead of help. Making worse con

Loss is a hierarchy of values, unique to oneself, impossible to comprehend from the outside. Loss is layers of priority, woven intricately across your life, a tapestry of history, experiences, memories, possessions, ownership, and environment, withdrawn. It is exhaustion of the tiny treasures in your life, tangible and intangible, that soothe you, nurture you, buffer, energize and propel you. The greatest losses are intangible, impossible to grasp without heartstrings.

The survivors of the SuperStorm understand the hierarchy of loss. Loss for them focuses on home, their history hemorrhaging across a painting in progress by an artist concentrating on a date of completion, not the hues: loss upon loss wiped away as a mistake on the canvas, an intrusion in the gestalt, smeared by a cold hand without pulse.

I had a home. It was beautiful to me: pretty, muted pastels, soft fabrics, comfy pillows, cozy workspaces, solid wood furniture, functional, all that I needed. My home was memories: my children scribbling everyday adventures across the walls, carving their dreams into Mimosa they straddled, imaginations soaring, unfettered; rolling in fragrant grasses with abandon, looming green foliage affording security: inspiring me, delighting me, as they grew strong and tall, like the trees in my sweet garden. It was all that I wanted: all that I needed.

The rocks in my garden were collected from the world: fondled, contemplated, transported to this fertile land, their history intact, lovingly placed with deliberation and intention, substantial and validated. My garden reeked of mountains, forests, meadows, beaches, streams, waterfalls, oceans, and Indian preserves, with igneous, sedimentary, metamorphic. Smooth Florida ocean rocks, Nova Scotia conglomerates, river rocks from Maine rested beside Mermaid’s toenails from Noyack, vibrant sunset shells from Sanibel, slipper shells, spotted clams, olives, angel wings, paper figs, murex, whelk, curls, and conchs. I picked each up because it was special, like the people in my secret garden.

I nurtured a sweet garden so many years ago, to shelter my children from the busy street, to give them unspoiled acreage to own: before baseball and two-wheel bicycle rides to Jones Beach expanded their world into tomorrow. Those were years of innocence, when neighborhood children flocked to our verdant sanctuary, for a summer’s day of riding toys, sliding water fun and hours of good climbing trees, imagining and inventing, rehearsing tomorrow, dripping ice pops into the cool dark earth, dirty feet running across blankets of soft grass. Those summer days of noisy children with dirty hands in my garden, needing me, wanting beyond any place to be here with my children and their toys, lived on each morning, in songbirds summoning me to tall hedges with deep strong roots, and soaring climbing trees. Memory whispers timeless messages across the heart. How simple, yesterday.

Then came years when bikes turned into cars. Heavy traffic on the street triggered adapting the yard for greater functionality. A street, that had once been dead-end host of neighborhood softball games, now wrapped around the new Cedar Creek Park and down to Seaford Harbor Elementary School, providing access to marinas and taverns. Cars were being hit in the street regularly by drunks. I placed white rocks where the grass used to be and two toyotas slept peacefully through college.

In those days, Cedar Creek Park was a bone the County threw at homeowners who protested the County’s repurposing of the marshland stretching south from our homes all the way to the Great South Bay: a playground for fishing, bird-watching, romping and exploring, ecosystems wiped out, mutilated, usurped by local government, to create a bedroom for sewage tanks and a chemical plant to spew the oppressive stench of chemical sewage into the salty air at 2 a,m, each night, as infants sleep in their cribs.

On October 29, 2012, SuperStorm Sandy engulfed our neighborhood with raging floodwaters, spewing sewage that tore our lives apart. My house gulped down the putrid slime and puked up everything I owned: my secret garden stood resilient above the onslaught, quiet sentinel. And as spring breezes ruffled lush lacy foliage, I sat each day in my fragrant green sanctuary and believed in restoration and nesting.

FEMA, the government agency for Hurricane Sandy survivor’s assistance, let us all down: providing outlandishly low assistance grants, that made timely return home impossible. FEMA prefaced the assistance with, “You can do it with free help.” In reality, during such an extensive event, free help, any help, was virtually non-existent. The survivors were on their own: destitute, living in substandard, make-shift quarters, due to governmental failure. The Hurricane Sandy Recovery effort is a National Tragedy: America’s shame!

Temporary Housing was doled out by FEMA. People dropped out of Temporary FEMA Housing every day, not to go to HUD apartments or permanent housing, but to substandard private accommodations anywhere, just to get away from the bullying and constant threats of being thrown out by FEMA agents at their door.

So, under threat again of being thrown out of the Hotel by FEMA in three weeks, I accepted an eleventh-hour offer of free help from an international church group seeking a house to restore. They had a house to restore on Monday, but it fell through. Consequently, they had 10 volunteers coming from Alabama on Sunday. I was called on Friday by the Director, who outlined what they would do in my house: check the roof leak, and possibly patch it, empty insulation and toys from the attic, insulate the walls, and sheetrock. I asked if that was all. He said yes.

I trusted this group because they had gutted my house. They had been kind, thoughtful people, who seemed competent enough. They never overstepped their authority, in their past interactions with my house.

I pulled up to the curb, prepared to ease my accessible van between formidable hedges enclosing my ravaged, gutted home, as I did each day since the malevolent event. I was comforted by this precious remnant of my life left looming, strong, surviving, like me, the terrible storm: my yard, filled with shadows of squealing children from yesteryear. I spent hours here every day, nurtured by memories.

My van hesitated, then stopped. Oddly, I pulled up to the wrong house, one that was in the process of being bulldozed, it seemed. My internal navigation had failed. Clearly, the hedges I passed through each day to a restoration project limping along without funding, were not here.

No, my house was standing green and solid in front of me, clearly visible: naked, exposed, vulnerable, on a totally bald lot, sterilized, automobiles speeding past. My yard was obliterated. My garden, was mutilated, demolished, gone! The ground was still steaming. My eyes clouded over and bled profusely a lifetime lost. Loss upon loss pummeled me and I was overcome. Hope threw a lance through my heart and I bled out in the street. I was all gone. There was nothing left of me. Nothing left!

A mob of burly workers, were hacking, chopping, slicing, ripping up roots that were pulling back with 60 years of brute strength and cherished history, unwilling to yield the land of their birth, struggling against insanity. Strangers raked wet dirt over my white pebbles, standing on my rock garden, loading six-foot-long pivots into belching yellow dumpsters, to transport what was left of my life to some stinking landfill, my yard to wither in the hot summer sun, and die, unattended, unloved, the last vestiges of an unjust, uncaring world gone berserk.

I was empty. My world was only devastation and loss. Gasping green vines hung limp from the dumpster screaming my name. My heart shrieked so loud my head exploded and membranes rained down on the fragrant dirt, and soaked into my land. I could not breathe. It was armageddon. Goodness was gone.

A big, rough man with a pleasant face walked toward my car. A grey-haired woman stood on my oozing land, pointing, amid swinging blades: men with axes trashing my land without permission. Strong men struggled with massive roots that would not relinquish their right to survive and howled for me to save them. The violence smothered a field of white pebbles and smooth pink river rocks. They had obliterated every piece of foliage, every living thing, from the street to the windows: privet hedges, Roses of Sharon, Wisteria, Forsythia, mom’s American Beauty rose bushes, pachysandra, and oak trees my sons planted. The ground looked like it was put through a sifter. Insensitivity swallowed my past, sucking songbirds, purple violets and lily of the valley, sweet blooming Privet, through the jagged, closing chasm.

The man walked over and leaned against my van, resting his sweating arm across my mirror, “Wendy?” he said. I wanted to throw his arm off my property.

“What did you do?” I whispered, breathless. I was shocked, devastated, appalled. I did not understand. I felt faint, enraged, hopeless, terrified. “What did you do to my yard?”

He turned away from me, toward my raped land, and declared with callous disregard, “Looks good, doesn’t it!”

I wanted to tear his head off and smash it to the pavement, at his arrogance. His lack of feeling confirmed he was not human.

“Why did you do that!” I said. “You had no right!” I could find no words. It was too horrible. “This is my land.”

“It had to be done.” he said. “It looks better.”

“Better than what? You had no right. This is my property.” I insisted. Everything was spinning. I could not see, for the tears.

He stood there with his back to me admiring his delinquency.

“Is Grace here?” I mumbled.. She was an administrator: he was the foreman.

“She’s over there,” he pointed. He called to her, like nothing was wrong. She walked toward my van. I was slipping away.

“Hi.” she said cheerfully. She was an arrogant woman with a perennial smirk. I wanted to lunge from my van and strangle her, as she did my garden. I was face to face with the Devil.

“What did you do to my yard? “. I said. “How could you do that?”

“Your neighbors like it.” she smiled.

“You talked to my neighbors, but you didn’t call me?” I said. “Why did you do this? This is my property!”

“In this Program,” she said, “we must make the house better. This is better.”

“No! No, this is not better.” I said. “You trim a hedge, you don’t demolish a yard. You had no permission to touch my yard! This is my property! You had no right!”

The two stood against my van, ignoring me, prattling, “It looks good. This is the least of your worries. You should be grateful. People have a lot more to worry about than something like this. You have a lot more to worry about than this.” They were arrogant ego-maniacs, trampling on property rights and choice, in the name of charity. I was revolted by their smug self-righteousness.

There was nothing I could do: it was all gone! My ability to function, in a wheelchair, living alone, on a busy street, was gone! It was no longer safe, secure, or private. The damage was irreversible. As a person with multiple melanomas, there was no longer shelter from the sun. The firm rocky surface for my wheelchair, exists no longer. They didn’t get it!!!

I guess the church trashed my yard because they had 10 volunteers from Alabama with nothing to do. The building materials were not delivered until 3:15 p.m., long after my yard was demolished by men with axes. They obliterated my present and my past, to provide busy work.

I lost my home to a terrifying natural event. I lost my environment to terrifying control freaks feigning charity. Beware of do-gooders with axes! They will tear your heart out!

Climbing a Ladder in the Snow. 4-11-13

Winter Driving - Winter Road

Living with pain, immobility, disability, in a National Disaster is like climbing a ladder in a blizzard, with howling wind tearing you from safe footing, blinding snow lashing your face: suspended over a swirling, bottomless pit, without mercy, without reason. Frozen rungs burn fingertips longing to let go, striving to hold fast, fearing below. Hold on. Be strong. The weak fall, or are pushed out of the way.

In disaster, by necessity, there is only time for routine, process and procedure. There is no time for difference, specifics, special cases. There are hospitals and nursing homes for the weak and infirm. Those who hold up the line, are trampled, stepped over: that is history. The Program, the Plan, Progress, is imperative to success. Statistics demonstrate results.

All of this is logical, reasonable for the greater good, for efficacy: but it is not reality. One person in every five living in society in America is disabled. One in ten has a severe disability. Disabled people are the world’s largest minority. We must learn to deal with disability, diversity, with intelligence, empathy and procedure. We must not let systems define, interpret and react to disabled people as freaks or annoyances: abuse or victimize them. We must not let systems turn functioning people into cripples, for the convenience of the system, because of their own internal inadequacies. It is the responsibility of each disabled person to teach uninformed, unaware, resistant people and systems that disability is as much a part of the process as it is of life. Disability is part of the equation: it must be part of the Plan.

Uninformed and inappropriate reaction to the disabled person, places responsibility to fit into the existing system, the prevailing mindset, estranged society, on the disabled person, and puts pressure on him/her to be all right. The pressure to fit in, not slow down the mechanisms, be normal, or step aside, is palpable. The message is, “You are in the way.” We are taught to hide our limitations, and smile when it hurts, to be accepted. Whether the disability is obvious, or invisible, you are in the way as long as you need something different. Different is time, thought, and pause. Modern society has no tolerance for unequal time distribution among individuals. There is only black or white: adequate, or faulty.

Society does not understand the functioning disabled: that some people live with severe symptoms, and function as productive rational individuals, fit in, contribute, excel. And yet, if we need to pause for a moment, perception of our personage instantly changes. We are at all times compelled to stand straight. Be strong. Don’t drop the rope!

It is a regrettable fault of human beings that they relate and react to what they see and what they hear. The value of one human being cannot be seen with the eye. Vision is faulty. Perception is clouded by individual history, preferences and biases. We are all dressed in the same fragile derma, some with cuts and abrasions. Derma is superficial: there is so much more.

Likewise, our value cannot be identified by word of mouth. Words are flexible tools, useful to facilitate a purpose, subjective, not necessarily accurate representations. Words can be manipulated, colored, changed. We should believe what transpires: action is reality, value.
What I do is who I am.

And so it follows that there is unrelenting climbing of the ladder in the snow, for disabled during disaster. Hold tight! Don’t slip! There are those waiting for you to fall: to prove that you are incompetent, irrelevant. There are those who want you to move on, disappear, stop taking up space. You are in the way.

The quandary is the hierarchy of need in disaster. Everybody is in need: dire need. There is no room, no tolerance, for additional need: unrelated need. In real life, a disabled person deals with difficulty, every day, in every situation: existing is a challenge. When life stops, when the world holds its breath for disaster, needy people are an unanticipated, unwelcome burden.

The loss sustained by a disabled person can not be understood by an able bodied person: they have no field of reference for it. It is core suffering, not circumstantial loss. Disabled people do not need people to share their pain. They do not want pity, they want to be accepted and included, as they are: given a chance to function on their own terms, without judgment. We are each of us imperfect beings in an imperfect world: everyone has some cross to bear, and a little bit of hero in him.

It is always hard for the disabled person, physically, environmentally, socially. But, in disaster it is hard for everyone, not just disabled people. However, disabled people live with constant, unanticipated challenges every day, and adjust to deviation and dissonance readily. Able bodied people often live relatively comfortable, predictable lives. They may have difficulty adjusting to being victim. They may have less tolerance for breach of their continuity, status quo.

In reality, society, disaster management, would be happy to pass the burden of disability on to hospitals, nursing homes, incompetent custodial institutions. Disabled people try to stand up and look normal so agencies leave them alone. Disabled people spend half of their lives pretending to be o.k., first so no one will put them away, and then so loved ones will not feel bad that they are not o.k.

When you are disabled, in pain and in your home, it is like a policeman who, by habit, sits with his back to the wall in a restaurant. You are in your own environment, operating on your own terms, secure, safe, confident. You are in control. You have your back to your own wall. You are normal, within your environment, your sanctuary. You are valid, acceptable, accepted. You are content.

Nobody is ok being disabled, compromised, living in severe pain. It is abnormal, extremely difficult, caustic. But, one day certain people wake up, and in a split second nothing will ever be the same, and everything will always be difficult. There is choice: face it, or deny it, deal with it or rile against it, be strong or be pathetic. Choose to go on or exist and be acted upon. From that day on, there is no more life as you knew it, but you can create, enhance life. You want to do it on your own. You learn to handle your disability in creative, innovative ways. Your own actions make you free from dependence on others. The world can learn much from the process of living disabled.

How do we fix the systems? By accepting disability as part of the diversity and individualization of life and writing it into the script. Disabled people need very little in the grand picture: they contribute much to the greater good.

So, do not look away when a disabled person walks your path. Attitude and biases of people and systems make life intolerable, not disability. We do not ask for help unless we need it, just like you. sometimes we hold up the line, but so do you, for different reasons. Life is complicated. Disaster is awful, for all of us: in the same and different ways. Hold on. Be strong.