Impact Feature Issue on Disaster Preparedness and People with Disabilities

Personal Emergency Preparedness:
Who Are Your People?


Lynda Kahn is a co-leader at Inclusion Press International in Toronto, a faculty member of the University of Massachusetts Department of Family and Community Medicine, and advisor to the Emergency Awareness/Preparedness Initiative at the University’s Eunice Kennedy Shriver Center.

Jack Pearpoint is founding Director of Inclusion Press and the Marsha Forest Center, Toronto.

Most of us use planning processes to set directions in our lives: to help us think about our work, and where and how we’ll live, learn and try new things. We also need to think about and plan for the unthinkable – for emergencies, disasters. We need to do it now, and we need to do it withourpeople.

  • Be informed
  • Make a plan
  • Assemble supplies and a kit
  • Create a personal support network
  • Practice with your network and team
  • Maintain your plan and kit

There is, however, one fundamental concept underlying all preparedness planning:It’s all about relationships. We need people. First and foremost, we need to think about our circles of support and the people, connections, and relationships in our lives. Now is the time to recognize ifyourcircles (and the circles of people we support and care about) need to be strengthened. If so, don’t wait. Accept the challenge and nurture, build, and expand your relationships.

Big Systems and Personal Networks

Building connections will really make a difference to safety and to life. This could not only enrich people’s lives with more and deeper connections and relationships, it could save lives as well.

We all want to believe that “Katrina” will never happen again, at least not to us. Well, it may not be a hurricane, but chances are actually loaded in the other direction. Life happens to all of us, and for almost all of us, we will need some help at some point. Thus the question is how will we deal with life circumstances that will be out of our control, without being consumed by fear and just hiding under our beds.

There are choices we can make that will offer degrees of security. The range and complexity of the potential answers is bewildering, but in the thumbnail sketch there are two extremes: We can depend on “big systems” to take care of it for us, or we can build and strengthen our own personal networks of support. Clearly, both are necessary, but the revelations about recent disasters are decisive: Big systems don’t do well taking care of the “little” guy or gal. Thus, while we all work to repair and strengthen the systems so they will serve us better, the smart money would be to get to work today building and strengthening our own personal networks and working together with them to create our personal preparedness plans.

What If...?

What if we act on approaches that connect us? Our isolation from one another creates profound loneliness and despair. This is the greatest disability for any of us. What if we reframe and reorganize our energy? What if our actions engage and support folks with disabilities to share their gifts, including their capacity to bring people together? Here’s our suggestion for a quick start.

How about organizing “Our Neighborhood Emergency Planning Coffee & Brownie Party”? Make it a fun event. Invite everyone; get to know each other. The strategy is simple. In an emergency, we can take care of each other better than any “system” on the planet, especially if we know each other. Having relationships with your neighbors is the ultimate security blanket. Within the first 24-48 hours, before bigger systems might even reach you, the people who will make the difference are your neighbors; personal contacts and connections; members of your local place of worship; and folks you know through belonging to clubs, classes or other memberships. They will make the difference. We need to be good neighbors! This needs to be the core of our plan. It is an emergency preparedness strategy, and it’s simply a good idea.

Following the good neighbor strategy you can also join your local neighborhood watch, or neighborhood safety group. If there isn’t one, you or someone you support could be the catalyst to get one started. Think of this as a community engagement strategy. Become an active contributor to your community. That’s security. If you are a stakeholder with your people, and they with you, we will do what it takes to take care of each other. This is much more than “who is your emergency contact?” It’s really the opportunity to engage in a series of conversations with your neighbors and friends about how we get along together – and how we will take care of each other. Don’t think of this as a single “meeting.” There may be one “event,” but if we think about this as a series of neighborly conversations that get richer over time, we are on a more secure foundation. Each simple encounter and conversation becomes a moment to appreciate, but equally a piece of the strategic plan to have people in your life (a mutual obligation) who will help each other out every day, and in an emergency.

Waiting or Mutual Caring?

Some may wonder about the relevance of this “take charge of your life” approach for people who need various kinds of supports. Unfortunately, we have hard evidence from Hurricane Katrina, other disasters, and history that people with disabilities are too often left until “last.” The dramatic death toll from Katrina for people with disabilities is brutal testimony. People waited for “big systems” to take care of them. Too often it didn’t happen. Big systems were struggling to cope themselves. Communications failed. Transportation collapsed. Interagency struggles consumed valuable time and resources. We all know stories. The point is that in an emergency, unless we are very lucky, big systems are also in emergency mode and many of the people we know and care about will not survive until the big systems reorganize and get back into action. And even then, too often, people with disabilities will be low on the priority list for attention.

So, do we sit and wait for someone to take care of us when the evidence suggests it is chancy? Or, do we take charge and invest in making, renewing, and re-energizing our own personal networks that will make our daily lives more interesting, and give as much real security as there is for any of us in a serious emergency of any kind?

A frightening piece of research from New York City affirms this strategy. In a controlled experiment, an actor fell in the street with classic heart attack symptoms. Most people walked by. In the second scenario, after the fall, the actor asked for help, and a few responded. In the third, the actor asked people to “dial Dr. X at hospital X.” People responded with a clutch of cell phone dialing! Many of us want to help, but without appropriate cues, we become passersby.

In disasters, it is the same. Most of us are willing to help (at least a little) but we are paralyzed by our lack of understanding about what to do, and then we move on. When we know someone, when we have shared a cup of coffee, worshipped together, etc., we have a little knowledge about a real person and what might be helpful. If asked, and given a few clues, many, if not most of us, would be willing to reach out and give a hand to a fellow human. So the good news is that if we reach out and connect to people around us, build a network of relationships (perhaps even a few friends), there will be people who, if a crisis occurs, will think about helping each other out. They won’t wait for instructions from a bureaucracy that is itself in crisis. They will be able to figure out that someone who needs assistance to get around or to eat will likely need a hand. They will show up with lunch and an extra blanket. No waiting required. We will just get on with taking care of each other. If the cell phones are down and the power is out, it still works because we know each other. We know where we live, we know likes and dislikes, we know dozens of personal anecdotes about each other that help us to know/guess what to do in a crisis, because we care about one another.

Building Our Circles of Support

Efforts in emergency preparedness are aligned with the core values of community inclusion and membership. We are prompted again through these preparedness efforts to take stock of the very questions at the heart of individualized planning with people. Who is in your circle of support? Who’s in the inner circle? Who can you count on, at least “three deep” (at least three people in each important location), in the different places where you spend your time. Who will be part of your personal support network in the event of an emergency? Those trusted individuals and folks are the people you invite to be part of your planning process (the coffee party). They can assist you during an emergency. If we notice that these circles or relationships are thin, then we have identified important work to do. We need to build our circle of community connection.

  • FEMA. (2004). Preparing for disaster for people with disabilities and other special needs. Washington, DC: Author.

  • N.O.D. (2005). Prepare yourself: Disaster readiness tips for people with developmental or cognitive disabilities. Washington DC: Author.