Inevitable Ends: Chronic Illness and the Golden Rule

By Chelsea Ettinger ‘14

Chelse Ettinger ’14

What would you think if you saw a member of an American minority group being denied employment? Access to transport? Rights to have children? In twenty first century America, these denials seem unfair and shocking. Yet it was not too long ago that discrimination against the disabled was very real. In 1990, the United States government implemented the Americans with Disabilities Act, which prevented discrimination against the disabled. Because of the ADA it is difficult  to even imagine a world without a wheelchair ramp next to every stairwell, an automatic button for every door, and widespread access to public transportation for the disabled. Yet, while we have made steps in the right direction to accommodate disabled individuals in our society, we have only just begun to scratch the surface of the issues that being disabled raises.

America is a place that tends to move very quickly. Fast food, viral media, speedy technology, and so forth. In the past century America experienced improved living standards, as well as advances in medical technology and treatment that have increased life expectancy by a staggering thirty years. If in the past we had to deal with short, brutal (and now mostly curable) viral diseases, today our troubles have shifted to long-term, chronic conditions such as cardiovascular disease, diabetes, dementia, and other disabling conditions. The problem is that a healthcare system driven by an ideology that celebrates aggressive treatment and focuses on acute care is not suited to treating those who require long-term care for chronic diseases.

Americans view the body as a machine that we should control easily. Illness and disability, therefore, are seen as evil forces to be conquered, and if and when there is no quick, miracle cure, Americans get very unnerved.

So, despite the genuine progress that we have made with the ADA, we still stigmatize the disabled and the chronically ill who we can’t help but see as defective no matter how much we may sympathize with their condition. The result is a healthcare system that does not directly address their needs even though nearly half of the American population is affected by chronic illness, and as many as 25 percent are disabled. Thus, while over 75% of our health care funding treats the chronically ill,  most “treatment” only works to alleviate a patient’s immediate symptoms. True,  prescribing pain medication is a help, but what about the rest? What if the pain is too strong to be quelled by medication? How do they get home from their treatment in a hospital or clinic? Who helps them get into bed? What about eating and bathing?  Will they be able to sleep through the night? Do they have support from family and friends, who might have grown tired of the constant demands of their loved one’s condition? To truly help the chronically ill, all of these questions need to be answered and steps must be taken to provide for those needs. Surely, we can’t let these people slip through the cracks!

How have we fallen short on the promise of the ADA? First, we have refused to accept the fact that most chronic conditions are truly permanent. Currently, for most chronic diseases there are no quick fixes, no miracle drugs, no instant solutions to reward the patient who works hard at getting well, with a return to normalcy.  In reality, every day is full of triumphs and setbacks for the chronically ill, and no two days are ever the same.  Most of us have a linear conception of how illness works: get sick, see the doctor, get better, and be brave along the way. People who bear illness and disability with the fewest complaints are considered the bravest, and the most worthy of praise. But what if this process is on constant replay? It is not something that we Americans are accustomed to accept. To be fair to the disabled, however, this mindset has to change.

The most important consequence of not thinking clearly about chronic disease is that we have neglected to consider the place where the chronically ill and disabled are most challenged: in their homes. There are many good options for home care, such as home-health nursing and physical therapy visits after injuries; and with enough money patients can pay personal care assistants, or even nurses, to live in their homes and care for them on a day-to-day basis. Nevertheless, the home-health nursing program within the healthcare system is incredibly minimal and patients will only be visited for perhaps an hour, three times a week. This is a step, but it is simply not enough.

The disabled and the chronically ill are not inherently broken people. They are dis-abled and living in a fast-paced society, which is not prepared or willing to incorporate them into the world of those who are abled. The hard reality is that unless we begin to see chronic conditions in a new light, we will continue to ostracize a large part of America, which in time will most likely come to include us. History will judge us as harshly as we judge the past’s indifference to pain and suffering.