This week Occupy Oakland, in solidarity with the Occupy Wall Street movement, sponsored a General Strike, which culminated in a 2 mile march to the Port of Oakland. I was not there. All that I am, forged in the heat of the protest marches and demonstrations against the Vietnam war, in favor of ethnic studies classes at U.C. Berkeley, in support of the people’s right to the use of land, sent my heart and my husband out to march. My body, constrained by chronic back pain and more recently chronic foot pain, was unable to be there.
Invisible disability is more common than anyone knows. There are so many of us who look just like everyone else, but who live with limitations of physical, mental, emotional, or intellectual function.
Our nation, and indeed the world, is impaired by dysfunction that has been increasing, under the surface of awareness, for a long time. As a society, we have been living with invisible disability. Just as the individual’s unseen disability is so difficult for others to recognize, most people simply have not noticed the magnitude of the dysfunction in social institutions, or its affect even on the people that they know.
Now the dysfunction, the disability, in our nation has become so widespread that it has broken the surface, and everyone can see it. No longer invisible, it affects 99% of the people, and it can be experienced personally with all the senses, and not just seen as affecting someone else. We and our friends are burdened with financial difficulties, worried about caring for our aging parents and getting our youth through college without leaving them crippled with debt. We and our acquaintances are struggling to keep our homes, or have lost them, or never had a chance of owning them. We and our families have lost our savings, or lost our jobs, or can’t get a job. We all know single parents who can’t afford childcare or someone who retired after a full work life who must now try to find a job to pay the bills. Around us, schools and universities and libraries and community centers and services for the aged, ill, and disabled are being closed, unfunded, unstaffed. And, as my disability is something I cannot ignore, that of our society also must be addressed by us all.
If we are to engage with these issues, it helps to understand more about ability and disability. The World Health Organization International Classification of Functioning, Disability and Health (ICF) has updated the discussion of ability and disability. It defines “disability” as “an umbrella term for impairments, activity limitations and participation restrictions.” The ICF emphasizes that anyone can experience disability, which thus becomes a “universal human experience.”
Even more important, the meaning of a disability depends on the context of a given environment. The environment can make a difference between the “level of capacity” and the “level of performance.” If my environment is my home or my office, where I can sit on my reclining chair, I have less back pain, and my “performance,” or what I can actually do, is close to my “capacity”, or what I can do under ideal conditions. On the other hand, if my environment is marching in a demonstration in the streets, my “performance” is less than my “capacity,” and I will have to stop in just a few blocks and go home.
The importance of these definitions is the concept that changing the environment can completely change the meaning of the disability. The word “ability” can be defined as “the power to act.” The previous, or medical, model is to try to fix the disability. As a physician myself, it is always very tempting to put energy and resources into fixing the problem. However, as an experienced physician, I know that this is not enough, and that the results are often limited. The new model is to bring the person with the disability into balance with the environment, by changing the environment.
Now we are in the realm of healing. As physicians, we support healing, which derives from the word for wholeness. As such, we are obligated to attend to the whole person within the whole partnership/family, within the whole community. It is attention to the wholeness of our community, in the broadest sense, which inspires the Occupy movement.
What else does the Occupy movement have to do with healing? I’m not referring to the fact that so many people in this country have limited or no access to medical care, that the chief cause of bankruptcy is medical bills, that people die because they do not have health insurance (I personally have 2 friends whose death certificates should have included the diagnosis “due to lack of health insurance”). I’m not discussing the lack of preventive medical care, which drives up unnecessary health care costs on top of the enormous human costs of illness. I’m not even talking about the differential between the 1% and the 99%, and how the worth of a life and of health is measured in money.
The Occupy movement, grassroots assemblies across the whole country, is composed of a true representation of the 99%, different ages, genders, races, ethnicity, religions, work histories, interests, and ideas. These assemblies promote wholeness, coming together for group consensus decision-making, helping each other with the activities of daily living of a society (housing, food, etc.), and focusing on healing the dysfunction of society as a whole. It is a movement that rejects special interests, has no leaders, and has a single issue:
people together making change, resisting greed, corruption, and the hoarding of resources by the 1%. They are changing the environment in the process of trying to fix the problem.
This movement is our hope. Any physician can tell you that we must have hope to go on, even in the most desperate circumstances. When we have hope, we can tolerate the most difficult treatments, smile despite the pain, and plan for the future, to make a better world for our children’s children’s children.