La Lamentation Americaine

In the past week we have witnessed a vertiginous array of domestic and foreign policy proclamations that underscore the administration’s objectives both domestically and internationally. We made an arms deal with Saudi Arabia.While in Saudi Arabia,the Secretary of State, Rex Tillerson, announced that human rights were no longer a U.S. foreign policy objective, as national security and economic issues are more pressing concerns. The next day Bahrain fired on peaceful protestors. Mick Mulvaney released a draconian budget that targets older, sick Americans, the poor and the disabled. The President told his Saudi Arabian hosts, after a 110 billion dollar arms deal, that he would not lecture them on their way of life, but lectured our allies at the NATO Summit about their immigration policies and refuses to verbally support Article V. News reports revealed that President Trump, during a phone call, allegedly also praised Filipino leader Duerte on his handling of the drug problem in the Philippines, glossing over the leader’s extrajudicial killings of 7,000 people. Ben Carson, the Secretary of Housing and Urban Development espoused his idea that poverty is a state of mind, suggesting poverty is the result of some character flaw. Betsey Devos, the Secretary of Education, while meeting with Congress, pitched her proposal for federally funded private education, but refused to guarantee her department will ban federally funded private schools from discriminating against the disabled or members of the LGBT community. A Republican candidate body slammed a reporter, but was elected the next day. Republican leaders called only for a verbal apology, but remain mum on the abject lack of morality. The list is exhausting, and doesn’t even touch on the pesky Russian issue consuming the White House.

To summarize, the current administration desires to spend an increasingly, disproportionate amount of money on defense, while decimating programs that alleviate poverty and health. Meanwhile, the extremely wealthy receive more tax breaks. It is America first, at least for the wealthy, but American values have been sidelined. The United States has been a great military power for the last century, and a strong defense is critical to the security not just of our country, but the free world as well. Fighting terrorism is a laudable goal. However, what ideals are we defending? Until recently, every American President, irrespective of political party, has boldly proclaimed our country stands for democracy and freedom. Our leaders have consistently sought to protect human rights around the world. Should our policies only reflect self interest? Are we now defining ourselves as a people only interested in economic prosperity, even if the majority of our citizens are experiencing economic hardship? America, despite its imperfections, has always stood out as a beacon of light because we championed the rights of all men, yet now we are laying our principles aside. In a Man for All Seasons, Thomas More said: You have to stand for something or you fall for everything.

Realpolitik has resulted in an imperfect application of American ideals. On more than one occasion, the United States has supported dictators who opposed communism, and we have implemented foreign policy initiatives and trade deals that fell short of the ideals of democracy and freedom. History has shown that when American interests align with dictators, the results are disastrous. Up until now, however, there existed the belief that American stood resolutely behind democracy and freedom. American soldiers have consistently heeded the battle cry of American freedom and values, gone to war and died on the battlefield. A nation is judged not only by its military strength, but also by how they treat their citizens.

America has long had an issue with racial inequality and discriminatory policies, but little attention had been paid to our treatment of the disabled. The civil rights of the disabled were guaranteed only recently. Poverty and disability are kissing cousins and the care of someone with disability is often economically disastrous for families. Currently, 2.3% of Americans receive SSD (disability) benefits; they comprise 15% of Medicaid enrollees and account for 40% of Medicaid dollars. There are more people with disabilities in America, but they fall out of this particular catchment. Only one in four SSI applicants are approved for disability benefits, and the U.S. ranks among the lowest for their care of the disabled among developed nations.

Throughout much of American history, the medical model of disability has been followed in the treatment of disability. The disabled person was viewed as the causative problem and focus was placed on the individual’s impairment. Medical care was given to relieve pain and suffering, often resulting in the institutionalization or placement in group homes of those with the most severe disabilities. The medical model of disability was practiced at best under benign paternalism, often connoting a sense of otherness to those with disabilities. Those with disabilities were viewed as not fully functioning members of society, and instead became less autonomous and often subject to curiosity, if not pity. Some U.S. cities even enacted the “ugly laws”, which banned a person with a visible disfigurement from public places or streets. The last time a disabled person was arrestedunder the “ugly laws” was in 1974, in Oklahoma.

During the 1970s, the care and treatment of those with disabilities started to evolve. Beginning with Medicaid expansion in the 1970s, people with disabilities started receiving acute and long term care services outside of the institutional setting. By the 1980’s, President Reagan signed the Katie Beckett waiver, which allowed for the return of the disabled to their own homes by providing home care services. The National Council on Disability convened in the early 1980s to examine the level of discrimination against the disabled, and after initial pushback, Congress finally passed a bill prohibiting discrimination against the disabled. In 1990, President George H.W. Bush signed the American with Disabilities Act (ADA). It was the result of a bipartisan effort. This expansion of laws and policies regarding the disabled started to follow the social model of disability. The social model of disability proposes that a person’s environment dictates the functionality of a person, and that it is the environment that prevents a person with disability from fully functioning in society. Following the passage of the ADA, infrastructure, mass transportation, buildings, telecommunications and employers changed the physical and cultural environment to allow for full communal participation for those with disabilities. Discrimination still exists, but it is not as pervasive. Many of the disabled wanted to be part of mainstream Americana, but were denied employment prior to the ADA, thus trapping them in poverty. The ADA eased the way for those with disabilities to join the workforce.

In many ways it seems unfathomable that the ADA was only passed in 1990. Even today, I wonder how many people, who can claim a disability on an employment application, actually do so, if they can hide it. When I first started my practice, I became pregnant with my third child. A patient left my practice citing her fear that I couldn’t give her the right amount of attention. A year later I was diagnosed with cancer. Considering the attitude of the aforementioned patient, I told no one in my practice I had cancer, although I looked significantly different when the hair loss and other ailments became physically apparent. I had three children under five years of age and ran a practice. To keep my wig in place, I started wearing a bandana to keep the wig secure, and people commented that I had become a hippie. Outside of the office, there were frequent stares and whispers, and I went from being a mother, wife, physician and self-actualized person to a “cancer patient.” I was in a grocery store one day, and a strange(r) man approached me and sarcastically asked if I thought I was cool. I replied that I had cancer, and then asked why he looked the way he did. The stranger immediately turned around and left the store. It was one of the few, serendipitous times in my life when I had the perfect comeback, at precisely the right moment.

Despite the above-mentioned comeback, I abhorred the idea that I was treated differently, even for a brief stint of time. More than the fear of mortality, or the pain, or the frustration with hospital billers and insurance companies, I wanted to feel normal, to look like my old self and not be the subject of stares. I resented the “otherness”. I didn’t have a disability, just a short-term cancer problem. I knew that I would go back to looking like myself, but there are so many of us who live with chronic disability and there is no escape. They are modern day heroes, but are rarely treated as such. They are not blind professors, occupational dwarf therapist, or deaf artists. They are people, professors, occupational therapists and artists living with blindness, achondroplasia and deafness.

We have come a long way in the treatment and attitudes towards people living with a disability, but we still have to go further. The draconian budget cuts to Medicaid, if enacted into law, will be disastrous for those living with disability, as Medicaid supports 40% of those with disability. Refusal to enforce federal laws banning discrimination against the disabled individuals will be equally pernicious, as it will open the floodgates to overt discrimination. We should not abandon the most vulnerable among us.