What Happens to the Disabled When Everyone’s Disabled?
An amazing story about caregiving for the disabled at home
Raphael Adams Qualicare Franchise Corporation
Disability: ‘any reduction or lack of ability, caused by impairment, to perform an activity in a way considered normal for a human being.’ (World Health Organization)
Perhaps one of the most significant social trends in the last 40 years (in addition to smoking bans), has been the public accommodation of the disabled. The goal has been to allow them to live as normal a life as possible based in their own homes and not institutions. In public, handicapped facilities are widely available. And a whole industry, both public and private, had developed that is focused on caring for the disabled at home.
In essence, our society of the abled has finally accepted responsibility for those who are disabled.
But what happens to the disabled when all of society is disabled, when the support systems completely shut down?
This is what happened back in October when Hurricane Sandy hit the East Coast. There were massive power failures, fuel shortages, transportation shutdowns, catastrophic damage to private and public buildings. The East Coast was, by WHO’s definition, disabled.
For most people, this was an inconvenience. For some people, this was dangerous. For Nick Dupree, this was a huge, life-threatening crisis.
Nick lives on the 12th floor in a Lower Manhattan apartment. Nick suffers from mitochondrial myopathy, a neuromuscular disease which makes him dependent on a ventilator and confined to a wheelchair. For medical reasons, he could not be evacuated and when the power went out, he needed portable batteries to maintain the ventilator. Unfortunately these batteries required re-charging every 3 hours. There was a generator at the Fire Station across the street, but this required someone to carry the heavy batteries up and down 12 flights of stairs since the elevator was down.
When they put their dilemma on Facebook, an amazing woman named Crystal Evans-Pradha, who lived 200 miles away in Boston, decided she had to help. First she tried to contact various resources like the Red Cross, FEMA and the Muscular Dystrophy Organization, but they were too overwhelmed to be able to help someone on the 12th floor. What was needed was a generator but there were none to be found in the blackout. After much research, Crystal discovered that a car battery with a special converter could be used in a pinch. She had to find the right battery and the right converter for Nick’s type of breathing apparatus.
Thanks to Google and facebook and a variety of other social media, she was in business. Except she didn’t have Nick’s address. And Nick’s cell was dead. More Googling and finally she and a friend, Sandi, were able to set out for Manhattan from Boston, picking up vital supplies, including food and water, on the way. Since the whole area was without power, this was no simple task. Finally they arrived in Manhattan and found Nick’s building in the darkness. Now came the task of carrying hundreds of pounds of equipment up twelve flights of stairs.
Did we mention that Crystal is wheel-chair bound? The Fire Department couldn’t or wouldn’t help, so Sandi had to make the many trips herself. Nick’s caregiver, who had just arrived, set up the equipment and Nick’s situation improved considerably.
These are just the highlights of a much more complicated story. Read the whole harrowing story here: http://littlefreeradical.com/2012/10/31/unconventional-aid-helping-nick-dupree-social-networking-style/
The lesson of this story is that we should always considerable the most vulnerable among us, especially when a crisis hits. Caregiving can sometimes mean going above and beyond the “normal” call of duty.