Living with pain, immobility, disability, in a National Disaster is like climbing a ladder in a blizzard, with howling wind tearing you from safe footing, blinding snow lashing your face: suspended over a swirling, bottomless pit, without mercy, without reason. Frozen rungs burn fingertips longing to let go, striving to hold fast, fearing below. Hold on. Be strong. The weak fall, or are pushed out of the way.
In disaster, by necessity, there is only time for routine, process and procedure. There is no time for difference, specifics, special cases. There are hospitals and nursing homes for the weak and infirm. Those who hold up the line, are trampled, stepped over: that is history. The Program, the Plan, Progress, is imperative to success. Statistics demonstrate results.
All of this is logical, reasonable for the greater good, for efficacy: but it is not reality. One person in every five living in society in America is disabled. One in ten has a severe disability. Disabled people are the world’s largest minority. We must learn to deal with disability, diversity, with intelligence, empathy and procedure. We must not let systems define, interpret and react to disabled people as freaks or annoyances: abuse or victimize them. We must not let systems turn functioning people into cripples, for the convenience of the system, because of their own internal inadequacies. It is the responsibility of each disabled person to teach uninformed, unaware, resistant people and systems that disability is as much a part of the process as it is of life. Disability is part of the equation: it must be part of the Plan.
Uninformed and inappropriate reaction to the disabled person, places responsibility to fit into the existing system, the prevailing mindset, estranged society, on the disabled person, and puts pressure on him/her to be all right. The pressure to fit in, not slow down the mechanisms, be normal, or step aside, is palpable. The message is, “You are in the way.” We are taught to hide our limitations, and smile when it hurts, to be accepted. Whether the disability is obvious, or invisible, you are in the way as long as you need something different. Different is time, thought, and pause. Modern society has no tolerance for unequal time distribution among individuals. There is only black or white: adequate, or faulty.
Society does not understand the functioning disabled: that some people live with severe symptoms, and function as productive rational individuals, fit in, contribute, excel. And yet, if we need to pause for a moment, perception of our personage instantly changes. We are at all times compelled to stand straight. Be strong. Don’t drop the rope!
It is a regrettable fault of human beings that they relate and react to what they see and what they hear. The value of one human being cannot be seen with the eye. Vision is faulty. Perception is clouded by individual history, preferences and biases. We are all dressed in the same fragile derma, some with cuts and abrasions. Derma is superficial: there is so much more.
Likewise, our value cannot be identified by word of mouth. Words are flexible tools, useful to facilitate a purpose, subjective, not necessarily accurate representations. Words can be manipulated, colored, changed. We should believe what transpires: action is reality, value.
What I do is who I am.
And so it follows that there is unrelenting climbing of the ladder in the snow, for disabled during disaster. Hold tight! Don’t slip! There are those waiting for you to fall: to prove that you are incompetent, irrelevant. There are those who want you to move on, disappear, stop taking up space. You are in the way.
The quandary is the hierarchy of need in disaster. Everybody is in need: dire need. There is no room, no tolerance, for additional need: unrelated need. In real life, a disabled person deals with difficulty, every day, in every situation: existing is a challenge. When life stops, when the world holds its breath for disaster, needy people are an unanticipated, unwelcome burden.
The loss sustained by a disabled person can not be understood by an able bodied person: they have no field of reference for it. It is core suffering, not circumstantial loss. Disabled people do not need people to share their pain. They do not want pity, they want to be accepted and included, as they are: given a chance to function on their own terms, without judgment. We are each of us imperfect beings in an imperfect world: everyone has some cross to bear, and a little bit of hero in him.
It is always hard for the disabled person, physically, environmentally, socially. But, in disaster it is hard for everyone, not just disabled people. However, disabled people live with constant, unanticipated challenges every day, and adjust to deviation and dissonance readily. Able bodied people often live relatively comfortable, predictable lives. They may have difficulty adjusting to being victim. They may have less tolerance for breach of their continuity, status quo.
In reality, society, disaster management, would be happy to pass the burden of disability on to hospitals, nursing homes, incompetent custodial institutions. Disabled people try to stand up and look normal so agencies leave them alone. Disabled people spend half of their lives pretending to be o.k., first so no one will put them away, and then so loved ones will not feel bad that they are not o.k.
When you are disabled, in pain and in your home, it is like a policeman who, by habit, sits with his back to the wall in a restaurant. You are in your own environment, operating on your own terms, secure, safe, confident. You are in control. You have your back to your own wall. You are normal, within your environment, your sanctuary. You are valid, acceptable, accepted. You are content.
Nobody is ok being disabled, compromised, living in severe pain. It is abnormal, extremely difficult, caustic. But, one day certain people wake up, and in a split second nothing will ever be the same, and everything will always be difficult. There is choice: face it, or deny it, deal with it or rile against it, be strong or be pathetic. Choose to go on or exist and be acted upon. From that day on, there is no more life as you knew it, but you can create, enhance life. You want to do it on your own. You learn to handle your disability in creative, innovative ways. Your own actions make you free from dependence on others. The world can learn much from the process of living disabled.
How do we fix the systems? By accepting disability as part of the diversity and individualization of life and writing it into the script. Disabled people need very little in the grand picture: they contribute much to the greater good.
So, do not look away when a disabled person walks your path. Attitude and biases of people and systems make life intolerable, not disability. We do not ask for help unless we need it, just like you. sometimes we hold up the line, but so do you, for different reasons. Life is complicated. Disaster is awful, for all of us: in the same and different ways. Hold on. Be strong.