Americans are often unwilling, or unable, to empathize with chronically ill and/or disabled people. Some rough thoughts on this topic:
1.) Disabled people (and this includes chronically ill people) are a minority in the U.S., making up only 19% of the population—according to the most *generous* Census estimates in 2010. More conservative estimates set the figure at 8-10%.
2.) It’s probably safe to say that many Americans do not personally know anyone with a disability or a serious chronic illness, nor (because of this) do they have any real understanding of the multiple layers of discrimination (social, governmental, financial, etc.) that disabled and chronically ill people deal with on a daily basis.
3.) Likewise, many Americans fail to understand that disability and poverty are linked, and that the U.S. government and society effectively seek to “punish” disabled and chronically ill people by imposing poverty and other adverse economic and social conditions upon us.
For some inexplicable reason, Americans continue to ignore the statistics about poverty and disability/chronic illness, as well as the very real ongoing practices of discrimination against people with disabilities and chronic illnesses. These discriminatory practices include (but are not limited to): discrimination in education; discrimination in employment; discrimination in health care; financial discrimination; etc. All of these are violent forms of systemic oppression comparable with those visited upon other minorities including Black/Brown/indigenous people, gender non-conforming people, gay people, immigrants, religious minorities, and so on.
4.) There is an irrational (Darwinian) insistence by Americans that disability is “different” from characteristics like race, sexual orientation, gender expression, immigration status, etc. It is not. No one chooses to be born with a disability. No one chooses to acquire a chronic illness. These are not “choices,” and to continue painting them as such denies inclusion in progressive social and political movements to people with disabilities and chronic illnesses. Similarly, disabled and chronically ill people are not “biologically” or “naturally” inferior (another U.S. folk belief) to non-disabled and/or healthy people. The mythology surrounding “natural inferiority” and disability/chronic illness is astounding and contributes to the dehumanization of people with disabilities and chronic illnesses, which in turn contributes to our treatment as “sub-human” and “not worthy” of basic human rights like health care or reliable employment.
In fact, it’s arguably from this place that President-Elect Donald Trump was coming when he mercilessly mocked and dehumanized a disabled reporter during a public speech this past Fall:
5.) Americans—having never actually had a not-for-profit health care system and being used to the abuse of receiving sub-par health care—-continue to normalize the under-servicing and lack of access of human beings in general, and disabled/chronically ill people in particular, to health care.
Although the U.N. has declared health care a human right, and although virtually every other major country in the world has decreed health care a human right, Americans continue to use terms like “entitlement” and “special privilege” to describe even basic forms of access to health care.
Here is an example of the rhetoric that prevails in America when politicians and the public discuss access to health care:
Notice the language used in this video by Romney—-who in 2006-2007 created “RomneyCare,” a Republican health care plan implemented in the state of Massachusetts which later served as the blueprint for “Obamacare.” Obamacare is a fundamentally Republican health care plan, and the language in this video is representative of Conservative (and even mainstream) rhetoric on health care in the United States:
- “No more free ride.” – Repeated multiple times throughout video.
- “It’s time for PERSONAL RESPONSIBILITY.”
- Romney states that one of the purposes of his plan is so that sick and disabled people “cost us less money.” Presumably “us” here refers to “healthy, non-disabled people.” Disabled and chronically ill people have historically (and are still) represented as “burdens” to the United States, rather than as full citizens who offer potential assets or special skill sets to the nation.
- “[…] ‘they’ won’t be showing up at the emergency room, which is far more expensive to the rest of us.”
- “[…] having people show up when they get sick and expecting other people to pay—-that’s a Democratic approach.”
Americans truly believe that it is “normal” to not have access to (or use) health care in a preventive or “maintenance” way, and that it is “normal” to wait until a medical situation is life-threatening, then show up at the E.R., and then be bankrupted by astronomical medical bills (or have those bills eventually forgiven and absorbed by the larger system, which includes taxpayers, the government, and private, for-profit health insurance corporations).
6.) Americans, because of the warped vision of health care I touched upon in Point #5 above—-a vision that has been normalized over generations in this country—-truly believe that:
- No one “deserves” health care.
- Health care is a “special privilege” or “entitlement.”
- Going untreated for months and years and then only seeking treatment at the Emergency Room when the situation is life-threatening is “normal.”
- Being bankrupted by medical bills is “normal” and “just part of life.”
- All problems can be solved by emergency care in the E.R.
- Dying because of lack of health care (in the wealthiest nation in the world) is “normal.”
- Disabled and chronically ill people are “naturally inferior” to non-disabled and healthy people, and represent a “burden” on the nation because “they” cost “us” money. Therefore, we should not care about whether “these people” have access to health care. According to this logic, it’s better to “let nature take its course” and allow people to die from treatable diseases. Social Darwinism at its most disgusting.
- A capitalist health care system, in which private, for-profit insurance conglomerates make billions upon billions of dollars by denying coverage and treatment to disabled and chronically ill people, and by shifting ever-increasing amounts of financial responsibility on to poor, working-class, and middle class people, is “normal” and “OK.”
- It is “normal” and “OK” to profit off of illness, disability, and death.
- It is “normal” and “OK” to value the massive accumulation of private wealth over human life.
- It is “normal” and “OK” that these are the most recent reported sums of revenue for the 4 major private, for-profit health insurance corporations in the United States. (If anyone finds more recent figures, please let me know):
+Aetna: $47.294 billion in revenue (2013)
+UnitedHealthCare: $157.1 billion in revenue (2015)
+Blue Cross (owned by the “Health Care Service Corporation”): $11.09 billion in revenue (2010)
+Cigna: $29.119 billion in revenue (2012)
- It is “normal” and “OK” when things like this happen:
- It is “normal” and “OK” to have Wall Street bureaucrats make decisions about access to medical care and treatment for acutely and chronically ill people, as well as disabled people, despite the fact that the system according to which these Wall Street bureaucrats do so is entirely premised upon an obscene conflict of interest with their (admittedly) capitalist mission to constantly increase profits for themselves, their companies, and their shareholders.
- “The problem” is “poor people who use ‘my’ taxes to get healthcare” and/or “sick people who ‘cost too much,'” —- as opposed to “private, for-profit health insurance conglomerates and their incessant greed.”
- It is totally “OK” and “normal” to push people—-sick and disabled people who actually NEED health care—-out of the health care system by using complex bureaucratic rhetoric and invented/fictional concepts like “pre-existing condition,” “high-risk pool,” and “lifetime limit on coverage.” It is, further, “normal” and “acceptable” for private, for-profit (billionaire) insurance conglomerates to use these loopholes to terrorize, torture, inflict pain upon, and murder disabled and chronically ill people in the interests of pursuing ever-greater profit margins for themselves and their shareholders.
7.) Because the vast majority of Americans are either healthy or reasonably healthy (which I am defining as NOT having a disability or chronic, ongoing illness that CANNOT be cured but CAN be managed with treatment across the life span), they don’t understand how the private, for-profit health insurance system works.
They don’t understand how it works because they don’t use it.
They don’t use it because they are healthy (read: privileged) and don’t need to use it.
….and this is how I end up with people telling me (for example), that it’s “OK” if I—-as a person living with Multiple Sclerosis since 2007—-am denied access to health insurance and health care, because “you can just go to the E.R.”
Um. The E.R. doesn’t treat chronic, incurable diseases. Those are managed outside the E.R. with long-term, daily treatment. They cannot be managed with a one-time trip to the hospital. They cannot be managed with ten trips to the hospital. They, in fact, cannot be managed with DAILY trips to the hospital.
HOSPITALS DO NOT TREAT CHRONIC ILLNESSES.
HOSPITALS DO NOT MANAGE DISABILITIES.
HOSPITALS DO ACUTE CARE, NOT CHRONIC CARE.
Likewise, people (well intentioned, caring people) think: “You can do a fundraiser to pay for your treatment. We can do a Kickstarter.”
So if I don’t have insurance, I estimate that my annual, out-of-pocket medical costs (WITHOUT INSURANCE) would be around $200,000 – $250,000.
Not one time.
Remember—-CHRONIC illness. Not acute. This isn’t a round of chemo to “cure” me. It is a LIFETIME need for supportive care and ONGOING MANAGEMENT of a CHRONIC (NOT ACUTE) illness.
Are you really committed to doing an annual fundraiser and raising around a quarter of a million dollars per year to pay for annual, ongoing maintenance and treatment? Can a small group of individuals or “the community” do that, especially if one’s community is not rich? Or would that level of cost be better borne by the entire U.S. population?
Oh, wait….I remembered that nobody wants to pay taxes in this country.
8.) Healthy, non-disabled Americans truly have absolutely no idea what it is like to actually try to USE insurance when you NEED it, nor do they understand what it’s like—-day after day, week after week, year after year, decade after decade—-to navigate a health care system that prioritizes ITS OWN PROFIT over YOUR HEALTH AND LIFE.
Healthy, non-disabled Americans don’t understand the hours upon hours of phone calls, letters, bureaucracy, and red tape it takes to get a medication for M.S. “pre-approved” or through “Utilization Review”—–both obscure processes used by private, for-profit health insurance companies with the express goal of DENYING coverage for the medication.
Moreover, these same Americans do not understand what it is like to face the reality that the medication you need to live costs about double your annual salary:
9.) Healthy, non-disabled Americans truly believe that illness and disability are “personal, individual tragedies or problems” and that “that’s your problem—-not MINE.”
Underpinning these beliefs is the misconception that: “Well, I will never get sick or become disabled. I’m not like THOSE PEOPLE who COST ‘US’ MONEY.”
Underpinning these beliefs is a deep-seated hatred and fear of disabled and chronically ill people—-which, at its core, is actually a deep-seated fear of one’s OWN vulnerability and unwillingness to acknowledge that (roll of the dice!) you, too, could become chronically ill or disabled tomorrow.
10.) Healthy, non-disabled Americans fail to understand that health care for disabled and chronically ill people intersects in critical ways with race and racism in the United States.
For instance, Black children are twice as likely as their White peers to have Asthma (a CHRONIC, LIFELONG as opposed to ONE-TIME, ACUTE illness).
Black children are also ten times more like than their White peers to die from asthma, and may have special needs in terms of the types of asthma medications they can or cannot take to treat asthma, due to racial/genetic differences in responses to medications such as Advair:
With respect to Multiple Sclerosis, there is a lower statistical percentage of Blacks with M.S. than Whites. HOWEVER: when Black people do get M.S., they tend to develop Primary Progressive M.S. (a more aggressive and disabling version of the disease) instead of Relapsing-Remitting M.S. (which is less aggressive, disables more slowly, and is more common among Whites):
Primary Progressive M.S. requires more aggressive (2nd and 3rd-line) treatments over longer periods of time, and more proactive and consistent primary care and maintenance care. Thus, continuing to treat M.S., asthma, and other chronic illnesses as though they are “acute illnesses that can be treated in the E.R.” is absurd:
I might add more to this later. That’s what I’ve got for now.
DRAFT: Thursday, December 1, 2016. 15:51H CST