From the website:

THIS SURVEY IS INTENDED ONLY FOR PERSONS LIVING WITH DISABILITIES AND CAREGIVERS AND WILL RUN UNTIL WEDNESDAY 25 SEPTEMBER 2013

On 13 October, the UN International Day for Disaster Reduction will focus on the issues surrounding some one billion of the world’s people who live with disabilities and disaster risks. These persons, by-and-large, still have no significant representation in the planning and decision making processes to reduce these risks or build resilience.The International Day intends to switch on and amplify the conversation that must take place on the needs of persons with disabilities in potential disaster scenarios.

Given the lack of data on disability issues generally, UNISDR is conducting this survey to ascertain the needs of persons living with disabilities and disasters. The International Day will further invite persons living with disabilities as well as society at large to get involved by expressing concerns, needs and recommendations on the International Day web page that can enhance implementation of the Hyogo Framework for Action (HFA) – the global disaster risk reduction plan that was adopted in 2005 for 10 years. 

The HFA explains, describes and details what is required from all different sectors and actors to reduce disaster losses. It was developed and agreed on with governments, international agencies, disaster experts and many others. The HFA outlines five priorities for action, and offers guiding principles and practical means for achieving disaster resilience. Its goal is to substantially reduce disaster losses by 2015 by building the resilience of nations and communities to disasters. 

In 2015 the HFA will complete its 10 year term. Findings from the survey and other information gathered during the observation of IDDR 13 will be used to influence the remaining two years of the Framework and as well as the post HFA consultations which began in March 2012. The goal is a post 2015 Framework that is more disability inclusive. 

Superstorm Sandy hit the New Jersey / New York coastlines on Monday night, October 29, 2012. Soon after, the power went out, and the situation quickly became one of life-or-death for many people with disabilities. Some areas lost power for more than two weeks. New Mobility’s article is about survival in the hands of community.

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The Afterthoughts : Ableism, Wheelchairs and Modern Society by Michele Kaplan

Quick note: I know it’s been a couple of weeks since I last posted an article here. Not for the lack of wanting to. The following article explains what happened. I truly feel that no obstacle / hardship is in vain if you can turn it into a teaching moment so on that note : Ableism, Wheelchairs and Modern Society by Michele Kaplan

When I first starting using a wheelchair, all of a sudden the majority of subway stations were not an option. All of a sudden, I was unable to physically enter a good 80-85% of the businesses & apartments in my neighborhood (Whether or not things were accessible once you were inside, is another story.).

It became very clear to me in this society, people in wheelchairs are too often at best an afterthought.

Having had the dual experience of both worlds (of those whose body conforms to the norm of mobility, and the world of those whose body does not conform to the norm, and is considered “impaired”) I understood how one’s daily perspective shapes the individual’s level of awareness, but why isn’t there more awareness? (When a character in a wheelchair is still a novelty, what does that say? Where’s the representation that would certainly help increase the awareness?)

There are two supermarkets within 3 blocks of my apartment. I once had to explain to the manager in one store, when they add extra racks in the aisles (thus decreasing the aisle’s width) that it often results in the aisle being too narrow for a wheelchair to get through. I actually had to take a photo of an example to show him, and we actually went to one of the aisles where he saw what I was talking about.

Now when I go, the aisles are always wide enough, but the fact that I had to educate him on this, shows that this was something that was completely new to him. Why? (Was I the only person in a wheelchair whosoever shopped there?) Why as the consumer, should I have to educate the business owner? Why aren’t they educating themselves? (Because I do feel that if you are going to run a business that sells to the public, that is one your responsibilities.)

But surely an industry, a business that solely caters to my demographic, such as a wheelchair rental, sales and repair company, would be more aware, right? After all, I am their customer. Without satisfied customers, they wouldn’t be able to stay in business.

A month ago, Betty (my motorized wheelchair) was in need of repair. The back portion of the seat (that was custom made to support my spine which is “damaged” and thus needs support) became loose and as a result was affecting my health. Initially, I wasn’t concerned, but when I called to arrange an appointment to get Betty fixed, I was informed that The Scooter Store had filed for Chapter 11, and so as a result, there was now a 4-6 week waiting list for all repairs.

As an alternative to waiting, they suggested I contact these 3 repair shops who were in my area. I assumed these suggestions were not just based on distance, but that these were reputable companies, so I decided to give them a go, visiting each one in person. The first one said they only repaired wheelchairs that were purchased from them. The second one kept trying to sell me all these extra things that I did not need. You’ll need new arm rests, headrest, footrest, a new battery and etc. Keep in mind, they hadn’t even evaluated the chair (and the chair was not behaving in a way that suggested that any of these parts were in anyway in need of repair let alone needing to be replaced).

Meanwhile I just needed them to tighten the screws so the seat would no longer be loose (for that is how it was successfully fixed it in the past.) They then refused to fix my chair unless I paid them 100 dollars out of pocket (even though this was covered by my insurance.) The last repair store, I was unable to visit because the entrance was not wheelchair accessible. Let that soak in.

By this point, 2 weeks had passed and it had become a vicious cycle. The loose part of my chair resulted in the lack of proper spine support, which was taking a toll on my body and thus made it harder to physically sit up let alone sit up and type on the computer to find other places that would fix the chair.

A friend of mine suggested I give the company she uses a go and so I did. Things seemed to be finally falling into place. They would fix the chair on Thursday (in my home), and I would be all set to march (roll) on Sunday with Occupy Wall Street (and The Free Bradley Manning Group) in the NYC Pride Parade, which seemed like a perfect happy ending to this story.

Unfortunately, I never made it to the parade.

The repair person arrived at my apartment, refused to even evaluate the chair, and took it back to Long Island for repairs. I was left with a highly unreliable loaner chair and for the next 5 days, I could travel at best, 3 blocks and back because the panel that showed how much power you had left would jump back and forth so you never really knew when the chair would stall. (and it’s not like there is an AAA for wheelchairs. You stall. You’re screwed.)

The funny thing is, giving people a loaner chair was not standard. This was something I had to advocate and insist on. Apparently, the company that caters to my demographic saw nothing wrong with not being able to leave your apartment (or in some instances get around your apartment) for 5 days. Apparently, the ability to do so is just silly and unnecessary. I mean, what human needs to leave their apartment, right? Ha ha ha.

I was frustrated not just because I had to miss the parade, not just because I was very socially isolated as a result of not being able to travel, not just that I had to deal with this incompetent system that has a direct negative impact on my health and freedom, I was pissed off because this was considered an acceptable level of treatment for people in wheelchairs.

“Drama and Loaner [Chairs] go hand in hand” one friend (who uses a wheelchair) said, and others agreed. This was the norm. Why?

If I were to rent a car, it may not be pretty (and trust me, I’m not asking for pretty) but it would be reliable. That would be standard. And that’s just a car. You can leave your apartment without a car. This is a wheelchair. This is a person’s legs.

It’s the way people come up to me and say “You’re such a pretty girl” and then looks down at the chair “What happened?”. It’s the way I was once told (while fighting the MTA to make their wheelchair accessible subway platforms consistently safe and actually wheelchair accessible) that it’s written in the ADA Law that if a repair/adjustment is too expensive, the MTA can get out of doing it.

It’s the way (as Leslie stated in her previous article) “When Mayor Bloomberg cut off the electricity and water [during Hurricane Sandy] to “encourage” people to evacuate The Projects, [the result was] low income, disabled people trapped in their buildings.“

We are at best an afterthought. Our lives are not viewed as being of (equal) value.

I once went to a Marxist Socialist lecture (just to hear different views), and the whole time I kept hearing about the importance of the worker. The revolution will be led by the workers. So I asked, “Well, what if you can’t work?” How do you then fit into the grand scheme of “the revolution”?

And it was explained to me that Karl Marx felt that everyone has something to contribute. It’s only capitalism that defines “contribution” in such a narrow fashion. That says if you can’t contribute in a way that fits within these narrow margins, then you are of lesser or no value to society.

Was Karl Marx on point (in regard to his views of contribution, value and capitalism)? And if not why does our society place varying values on different groups of people and how do we determine “value”?

New Jersey has received about $6 billion in federal aid from various federal agencies in the 250 days since Hurricane Sandy swept through the state — that’s just13 cents for every dollar promised.

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After The Storm Part 4 by Michele Kaplan: We Interupt This Article Series To Bring You…

So, the Occupy Gravesend Kitchen was born (and if you wish to read how it got to that point here is: part 1, part 2 and part 3 of this series.) How was it done? What was the response to this one woman kitchen (on wheels)?

I present for your viewing pleasure, the documentary (in full), Small Kitchen, Big Impact: Accessibility, Eating Green & The Relief Efforts.

Note: The documentary is about 68 minutes long. There may be a small pause between parts as youtube moves from one section to another. Be patient as it will load. If you find that youtube has skipped a section, click here.

(Side note: I do apologize for the gap between Part 3 and Part 4. There will be more articles to come! Stay tuned.

Any thoughts, questions, and feedback regarding the documentary can be sent to: OccupyGravesendKitchen @ Riseup.net (but without the spaces).

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Some Notes on Trauma and Disaster

By Leslie Freeman

I am writing this as I wait to address, via Skype, an audience of state and federal disaster planners, non-profit workers, first responders, and fellow disabled people at Portlight Strategies’ Getting It Right Conference on Shelter and Transportation Accessibility.  I wish that I were at the conference in person, along with Unfiltered collaborators Syd London, Millie Gonzalez, and Milagros Franco. I am with them, and with all of the Unfiltered community, at heart and in spirit, but the physical absence aches.

When we first embarked on Unfiltered, my idea was for Syd London to document my traveling experience, with my PA and my crip sister Michelle Mantione, to the Portlight conference.  Syd’s goal became to document a bunch of us crips together, to illustrate our access issues and connect them to the access and transportation failures that we experienced during Superstorm Sandy and hoped to prevent in future disaster responses. The project grew into something much broader and more far-reaching thanks to this collaboration, of which I am honored to remain a part.  Ironically, some of the same obstacles that I had encountered, and internalized, during the Sandy evacuation of my Zone A neighborhood in Coney Island ultimately prevented me from joining Syd and my crip family at the conference in Atlanta. I want to name these and related obstacles here, in order to raise awareness of the similar obstacles faced by thousands of other New Yorkers, including returned veterans and survivors of domestic violence and hate crimes, who live with post-traumatic injuries. 

Let me be clear: It is no small thing, to name the ways that trauma shapes our responses to disasters like Sandy. At the time of the storm, the population in and around the Projects on Coney Island included people who experience complex PTSD caused by wars, incarceration, intimate partner violence, and/or crime. When Mayor Bloomberg cut off the electricity and water to “encourage” people to evacuate the Projects, not only were low income, disabled people trapped in their buildings, but many were triggered by the isolation and confinement. Sirens and bullhorns patrolling our streets, ordering evacuation, surely compounded those triggers and further trapped folks with post-traumatic impairments. On Coney Island, at the far end of public transit service in Brooklyn, people trapped in their buildings were cut off for days from delivery of food or medication. Some people with cognitive, processing, and/or psychological impairments—people  like me, with PTSD, with brain injury—as well as people with dementia, with cognitive delay—became ill due to *confusion* and panic.

Door-to-door checks, in the days immediately following the storm, by grassroots organizations and volunteers saved lives. Kind folks from the Occupy movement and its offshoots, already familiar with flexible, needs-based strategies, were often willing to listen to survivors who had been trapped, and confused or panicked. They listened through survivors’ struggles to communicate clearly or in what, under ordinary circumstances, might be understood as a socially appropriate manner. This patient flexibility was not always the case with grassroots volunteers, but was almost never the case in dealings between poor, disabled survivors and FEMA or the Red Cross, unless the agency workers had already been exposed to community-based methods and successes. 

Though I was not, by the grace of  good friends, one of the people trapped on Coney, I struggled similarly to navigate the aftermath and displacement. As I noted in my previous blog post, I take pride and find beauty in my visible, physical disabilities. I see my scarred body as unique, and rarely either limited or limiting. I recognize, and use to the fullest extent, my mobility privilege, walking or easily taking public transit everywhere I need to go. I also work my literacy and speech privileges  overtime! But I labour to accept my cognitive and mental health differences, in part because I acquired these impairments more recently  in a context of repeated assault; and in part because of the difficulties with awareness and communication that they present even among my closest friends. I’ve internalized shame about how much of my own and others’ time and energy it can take for me to process and sequence information, much less to process and appropriately respond to complex situations.

As long as I am in a low-stress environment, with support for self-care such as food, rest, meditation, and medication, I’m fine. Perhaps a little forgetful. Easily overstimulated and overwhelmed and hypersensitive. Sometimes, especially when I’m tired, I misplace familiar things in odd ways: my laptop recently went in the fridge! I get lost, even with GPS on my phone and maps. (Okay, I’ve lost six phones in the past year.)  But add major stressors and subtract basic care… Imagine it this way: Have you ever been at a party, gone from buzzed to drunk too fast, couldn’t seem to get your bearings, yet you had to somehow stumble home? Do you remember how you felt when you finally found yourself at home, not entirely sure how you got there, your mind still slightly separate from your body? Did you try to piece together what you might have said or done along the way? That’s what was like to be separated from my routine, support system, meds and other coping tools, when I was homeless, after Sandy.

Just as the caring, attentive door-to-door checks by volunteers mitigated the chaotic circumstances of disabled folks trapped in the Coney Island projects, my chosen crip family helped me get to a safe place, from which I have been able to care for myself and my kids, and to give back to my community. 

And yet—I’m not in Atlanta with my beloved cripfam because I became worried I’d be a burden to my companions. I was afraid, not without reason, that traveling with me would burn them out, unless I could afford a full time personal assistant to mange my meds and self-care regimen for the trip. It seemed too big a risk, to leave my comfort zone on our sponsors’ dime. No one told me I should stay home—in fact, my crip sisters encouraged me to raise more funds for care—but I was insecure about *wasting resources*.

I’m writing this here, now, because it reminds me of the obstacles faced by disabled people in situations of displacement, without the benefit of a tight-knit crip community, often with no ties to disability pride. It reminds me of countless times when I wanted to give up in the middle of a long protocol for accessing a new service, especially recovery aide and compensation from FEMA. It reminds me of trying to parse form after form; of scrambling a temporary address and ending up, tear-streaked, in front of a suspicious cop. It reminds me of the faces of women and men I’ve seen, half-asleep, half-dazed, on the streets of my old neighborhood. I cannot speak for others whose responses to Superstorm Sandy have been framed by trauma and post-traumatic injuries, such as PTSD and TBI, but I seek, here, to speak to them, and in solidarity with them. I’m writing as another way to bear witness.

Flying the Not So Accessible Sky

with

Unfiltered: The Sandy Edition’s Crip Caravan

Photos by Syd London

© 2013


PRE-FLIGHT ACCESSIBILITY CHECKLIST

by Jamie Larson

1. Airline and Airport Research

  • Wheelchair size? Type?
  • Battery type?
  • Take any steps at all?
  • Transfer unaided?
  • Manual chair needed?

2. Questionnaire for Crip Caravan participants

3. Important power chair travel info via Kessler Rehab in West Orange, NJ

  • Ride chair to gate
  • DO NOT check powerchairs at the ticket counter
  • Special blue strap lift handles needed
  • Special plastic wrap needed
  • Photos of how to lift chair and lock battery attached to chair
  • Label chair in 4-5 places

4. Book tickets using an external website for travel deals. Specified seats and accessibility needs are not recorded.

5. Call reservations line to fix seating and confirm power chair plan

6. Inform the reservations representative of the airline’s wheelchair policies

7. Ask to speak to a CRO (Complaint Resolution Officer) who is trained in the disability policies.

8. Speak with the CRO for over an hour

  • Find seats that meet most, but not all of our group’s accessibility needs
  • Confirm the entire plan for power chair transportation with the CRO.
  • Make a list of what types of airline employees to ask for at airport
  • Document all of our passengers accessibility needs in the computer

9. Research TSA policies and regulations

  • Passengers in wheelchairs
  • Pat-down rights and procedures
  • Carrying medicine

10. Email TSA and Airline policies to all participants

11. Create step by step wheelchair plan

12. Ensure that passengers had purchased the lifting straps and plastic wrap for the powerchairs.

13. Create a Travel Packet for each Crip Caravan Passenger

  • 2 page detailed wheelchair plan
  • 4 pages of additional info about traveling with wheelchairs
  • TSA printouts on wheelchairs, pat-downs and medicine
  • Photo depictions of lifting straps and battery lock mechanism
  • 4 official airline Wheelchair Identification forms to attach to each chair
  • Clear plastic page protectors for Wheelchair ID forms and photos
  • Important Contact information
  • 1 copy for the group of “Nondiscrimination on the Basis of Disability in Air Travel” from the US Dept of Transportation
  • Back-up copies of all paperwork
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The Crip Caravan’s Flight & Access List

The Flight

Crip_Caravan_2013_by_Syd_London_webready-5023

Over the course of a week leading up to Millie F. and Millie G.’s flight to Atlanta hours were spent on the phone with Delta and TSA to ensure easy accessibility for their flight experience. Despite this, when Millie and Mille rolled up to the terminal ticket counter to check in the Delta agent was shocked and had no idea 2 people using motorized wheelchairs were booked for the flight. The Delta agent called for assistance. A short time later 6-7 men in uniforms showed up and stood around the terminal (some of them shown above), very close to us but never actually helping either Millie with the exception of 1 man in uniform.

Crip_Caravan_2013_by_Syd_London_webready-5047

Because the Delta agent at the ticket counter asked ticket holders to line up, despite Millie F. and Millie G. letting  Delta know we needed assistance or more time, Millie Franco was forced to transfer from her chair into the airport wheelchair in front of angry passengers. We were told other passengers wouldn’t board until Millie Franco and Millie G were safely on board. Simultaneously they were rushed, offered little help and report feeling humiliated by having to transfer in front of so many people who were all waiting and watching to board the same plane.

Photos and captions by Syd London ©2013

 

 

 

 

 

 

 

 

 

PRE-FLIGHT ACCESSIBILITY CHECKLIST

by Jamie Larson

1. Airline and Airport Research

  • Wheelchair size? Type?
  • Battery type?
  • Take any steps at all?
  • Transfer unaided?
  • Manual chair needed?
2. Questionnaire for Crip Caravan participants
3. Important power chair travel info via Kessler Rehab in West Orange, NJ
  • Ride chair to gate
  • DO NOT check powerchairs at the ticket counter
  • Special blue strap lift handles needed
  • Special plastic wrap needed
  • Photos of how to lift chair and lock battery attached to chair
  • Label chair in 4-5 places
4. Book tickets using an external website for travel deals. Specified seats and accessibility needs are not recorded.
5. Call reservations line to fix seating and confirm power chair plan
6. Inform the reservations representative of the airline’s wheelchair policies
7. Ask to speak to a CRO (Complaint Resolution Officer) who is trained in the disability policies.
8. Speak with the CRO for over an hour
  • Find seats that meet most, but not all of our group’s accessibility needs
  • Confirm the entire plan for power chair transportation with the CRO.
  • Make a list of what types of airline employees to ask for at airport
  • Document all of our passengers accessibility needs in the computer
9. Research TSA policies and regulations
  • Passengers in wheelchairs
  • Pat-down rights and procedures
  • Carrying medicine
10. Email TSA and Airline policies to all participants
11. Create step by step wheelchair plan
12. Ensure that passengers had purchased the lifting straps and plastic wrap for the powerchairs.
13. Create a Travel Packet for each Crip Caravan Passenger
  • 2 page detailed wheelchair plan
  • 4 pages of additional info about traveling with wheelchairs
  • TSA printouts on wheelchairs, pat-downs and medicine
  • Photo depictions of lifting straps and battery lock mechanism
  • 4 official airline Wheelchair Identification forms to attach to each chair
  • Clear plastic page protectors for Wheelchair ID forms and photos
  • Important Contact information
  • 1 copy for the group of “Nondiscrimination on the Basis of Disability in Air Travel” from the US Dept of Transportation
  • Back-up copies of all paperwork

The MTA’s Key Station Plan for Subway Accessibility

by Keith of The Weekly Nabe

"It’s one thing to read that it’s tough for wheelchair-bound persons to get around on the subway, but quite another see it visually. For that reason, I edited the Vignelli MTA map to show current accessibility and planned conversions.

Many of us take public transportation for granted, so imagine you were to wake up tomorrow disabled. Would the subway work for you? Or would you have to find an alternative?”

View the Map