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Saturday, May 30, 2015

All alone

I spent the early part of this week with a diverse group of scholars and emergency preparedness workers discussing the aftermath of Hurricane Sandy. The meeting is part of a large group of scholars who got a Sea Grant. It was truly an engaging experience and a welcomed departure from typical scholarly conferences. Our research was about why did people with a disability decide to ride out the storm. The concise answer is there was nowhere to go. Many of the NYC shelters were not accessible and people were turned away. In truth though, most people could not afford leave flood zones. Driving west away from the storm and staying in a motel was beyond their economic means. Some had no access to personal transportation in the form of a bus, van or car. Let me be very clear and reiterate--people had no where to go for a myriad of reasons. There were solid logistical reasons people with a disability rode out the storm. This fact has been conveniently overlooked and a few "experts" deemed people with a disability as non compliant. Technically this is correct. But take thought process one step further. Exactly how how were people with a disability supposed to leave flood zones? Were people with a disability part of the evacuation plan? In a word, no. This failure raised a fundamental question: do people with a disability have the right to be rescued. I would maintain and the court maintains the answer to this question is yes. See the Yale Law Journal article "The Right To Be Rescued: Disability Justice in an Age of Disaster". Link:

Since I got home, I have spent much time thinking about the difference between the law and reality.  I  know when I enter a plane for instance the FAA has a protocol for getting me on and off the plane in the event of a disaster. I once kept abreast of such regulations but no longer do so. The odds of me surviving  a plane crash are too remote to worry about. More to the point, the reality is in the event of a crash I am going to be the very last human off the plane. Think about it: I can save myself from certain death or I can stop and try and figure out a way to help the crippled guy that cannot walk even a little bit get off a burning jet. Ah, mass transportation--no experience is better at reminding me my existence is not valued. Another example between reality and the law. Bus operators are required by law to test the wheelchair lift before a bus is put in service. Most bus drivers that know how to use a lift are unaware of this law.  The reality is buses are out and in service under the assumption the lift will not be used. The worst offenders in terms of non operational lifts are hotels. All higher end hotels typically have a shuttle service--typically a small bus or van. The wheelchair lift is not often used. In fact I have been told many times the lift has not worked in months and in some cases years. 

Clearly, a disconnect exists. The law is on the side of people with a disability but few follow the law. Indeed, the law is perceived to be an unfunded federal mandate and as such is an onerous and unnecessary burden. How do I know this? People tell me this often.

 Back to Sandy. We were in the most general sense of the term were not prepared for Sandy.  I sincerely doubt any person familiar with Sandy will question our preparedness was not adequate. The next time we get such a storm I am convinced we will be better prepared. But what I have been wondering about is the lasting legacy of the storm. How do people with a disability feel? I am not referring to how people with disability feel about Sandy and how inadequate support was at the time. How do people feel now? Now as in today. Various federal agencies covered the cost of housing for all survivors whose home were destroyed for 12 to 18 months. Most people with a disability post Sandy experienced multiple barriers social and practical. Below is a perfect example:

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. Link:
 If you are not a cog, do not fit within the system problems abound. Do not deviate from the norm.  Do not request a "reasonable accommodation". Do not ask for more time to take a test. Do not ask about a wheelchair accessible room or the rent a car with hand controls. Do not try to get weighed on an accessible scale. It does not work and has not worked in years. Do not use a wheelchair lift. Do not be elderly and struggle with bills and change. Those behind you on line will huff and puff in annoyance. You must walk on a plane. If you need help you will slow down others. As in the above quote, "no men are equal". Hip hip hurray! The ADA says I am equal under the eyes of the law. That is not my reality. I am a man estranged from society and weary of others who have the power to decide what is and is not appropriate. We do not need an entrance at the front of the building. People who use a wheelchair can enter through the kitchen behind the dumpster. News flash: my sense of smell works fine and a commercial kitchen is a dangerous hectic environment. Oh, how the above resonated. "You are on your own". Oh how true. You are an individual not a part of the largest minority group in the country. You are alone. A mere individual and an unwanted one at that. Oh, we are so sorry there is no access. Sorry does not begin to cover it. 


Middle Child said...

Once again you are spot on. I find not one thing o disagree with. Don was so often advised when on a plane that he would be the last to be allowed off in event of trouble - Do you mind if I share this on Facebook... it needs to be read.

william Peace said...

Of course. Share the above with one and all. Har to worry about a plane crash. Getting hit by lightening a bigger worry in terms of odds.

Middle Child said...

Thanks Bill -
Or going to hospital has the biggest odds

Unknown said...

I had two disabled family members when Sandy hit I knew we could not care for both, so one was lodged with another family member. If not there, I'd have placed her in a nursing home. I had nursing homes on the ready for such contingencies. Of course, how a lot of those homes operated when hit with Sandy or other disasters have been a big problem. Completely inadequate and shameful.

What happened in parts of NY and NJ with Sandy, is the usual issue where there were people, disabled or not, who had no where to go. They did not have anyplace, anyone, anything as a plan. The alternatives that were left to them, institutional and crowd care did not fit their standards. So many who got hit got into trouble. Those without flood insurance, or inadequate insurance to cover this disaster truly lost everything that Sandy destroyed because the maximum covered, and that maximum did include adjustments for disability equipment at the same inadequate percentage, so it didn't help. Should the federal government give back every single such person, disabled or not, what they lost? If so, why bother to get insurance? That's where the problem is.

In our society, there simply is not a lot out there, as self sufficiency is the HOly Grail. Frankly, if I had no where to go and did not want the group facilities or had issues not well enough or not at all addressed at those facilities, I'd get a horrible pain and go to ER to ride out the storm in a hospital. Pick the best one in terms of amenities and riding out the storm, and get a mother of all incapacitated pain.

Don't forget what happened on 9/11 when the elevators stopped working and what those who cannot go down stairs still face today if that should happen and the building needs to be evacuated. It's important that each person know what the optimum thing to do is under such scenarios (and nearly no one contemplates) But those disabled are likely to find out that they are simply SOL in such circumstances. No one is likely to risk increased chances of injury and death by taking the time to get someone who will take whole lot more time and space and risk a multiple others' lives.

Just skimmed an autobio of a a football player, Mark Hertzlich who found out during some "survivor game" discussion while he was still weak from effects of chemo and radiation, that he was first to be voted off or not saved. Reality check there and reality.

The big fear is that in any disaster, someone with mobility issues is going to be left if the situation is acute. Unless someone is willing to risk self, the disabled will not likely get a whole lot of help.

william Peace said...

Cath Young, What a great comment. You are spot on. Have you read Sherry Fink's Five Days at Memorial? If not, I urge you to buy a copy or take a copy out from the local library.

Unknown said...

I shall. I always find your posts thought provoking. Can't say I enjoy them as they are not to be enjoyed.