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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.