I have multiple sclerosis. It is a painful, often debilitating, ever-progressing disability and disease with no cure. I don’t have a viable plan for what will surely be a lifetime of extensive healthcare. No one in my situation could. It would be impossible for me to maintain long term care under the for-profit insurance system. Over the last ten years, insurance deductibles have risen 111%, premiums have risen 55%, and workers’ earnings only 27%. I currently work full time to maintain my very expensive employer-based healthcare. When working full time renders me too disabled to continue working full time, I will promptly lose this healthcare.
The Democratic party and its complicit well and abled voters have determined that the suffering of millions under our healthcare system is part of an acceptable bargain to oust Trump from office. The refrain that we would “push Biden left” on healthcare after the election has quickly pivoted to “It’s time to unify,” “Let’s not dampen enthusiasm,” and “Why are you so angry?” The well and abled have abdicated responsibility to protect the sick and disabled from the brutality of a for-profit healthcare system, while demanding that we vote for a candidate who wants to continue it.
Around 26% of Americans have a disability, 60% of us have a chronic illness, and 100% of us are bound to age if illness or trauma doesn’t kill us first. The pledge that Joe Biden’s “public option” would provide the medically needy with a healthcare safety net is based on the premise that our safety net programs operate with a degree of benevolence that is separate from the for-profit system. But like our existing safety net programs, Medicare and Medicaid, a public option is far from a panacea for the sick and disabled. Medicare and Medicaid are not independent sources of compassionate care, but rather parts of a larger system that condemns the sick and disabled to a life of devastating health and wealth disparities.
This myth of a benevolent safety net presumes that Medicare provides comprehensive care for age and disability. Yet to be eligible with a disease like MS, I would first need to qualify for Social Security disability. To qualify for social security disability, I would be required to earn less than $1,260 per month and have “significant limitations in performing basic work” for at least a year. After proving my disability through poverty and a documented history of attempting to do work that causes me too much discomfort to complete, I would have to wait five more months to receive the average $1,258 per month SSDI benefit. Then I would have to wait an additional 24 months to qualify for Medicare. Three-and-half years of waiting for treatment for MS would cause a lifetime of irreversible damage. And this is the best-case scenario. Americans with disabilities are often denied full disability status and have to fight for years to be approved, further delaying Medicare eligibility and essential healthcare.
Once enrolled, people with progressive diseases like MS have historically been denied therapeutic services for failing to demonstrate “restorative potential” under Medicare definitions. This is an absurd standard, considering that someone with a progressive disease needs consistent therapy just to tread water. A 2013 court settled in favor of protecting people like me from this unjust denial of services, but like so many regulations around disease and disability, it is difficult to enforce. Those who are already exhausted from illness, and are often low-income as a result, rarely have the resources to fight for these services.
Unbelievably, Medicare does not cover any long-term custodial care costs. If my disease and disability required placement in a nursing home, the expense would be my responsibility. Here in Pennsylvania, that’s a staggering average of $9,977 per month for a semi-private room. This would certainly be prohibitive for someone who has to survive on a monthly SSDI payment of $1,258.
The alternative to Medicare is an underfunded, unevenly administered, state-allocated Medicaid program. In Pennsylvania, there are currently 14,647 people waiting for a Medicaid disability waiver to receive services. Pennsylvanians can expect to wait seven years to receive services to navigate communities that are otherwise inaccessible. People with multiple disabilities can receive a waiver and services for only one category of disability. There are no bridge programs to fill these gaps.
A restriction of $16,971 on annual income and a $2,000 cap on assets obligate Medicaid medical assistance recipients to remain very poor in order to receive their healthcare. If I needed skilled nursing care but did not have upwards of $5,000 a month to pay for it, I’d have to “spend down my assets” to qualify for Medicaid approved facilities. This would prevent me from receiving care at home with my family and could prevent me from being placed in a facility anywhere near my home and family. This could also deprive me of the appropriate care for my needs; the care that is necessary to sustain my health and my life.
Medicare and Medicaid are rife with complicated formulas for exclusions, exceptions, and limitations like these. The cruelty that is imposed by the constraints of these programs cannot be overstated.
The inefficiency and inhumanity of Medicare and Medicaid are a by-product of the insatiable appetite of for-profit healthcare. Those who can afford private supplemental Medicare plans receive a higher level of care while the rest of us live out our years rationing medicine and care not included in basic coverage. Intentionally opaque financial agreements between pharmacy benefit managers and pharmaceutical companies determine which drugs are available to Medicaid patients and which they must go without. At every level, our healthcare system has been co-opted by private interests competing for “business.” Medicare and Medicaid, like a potential public option, are merely part of the tiered system of commodified healthcare. The survival of commodified healthcare is dependent on making the most profit with the least overhead; an entire system based on denying vulnerable people the care they need after payment has been made. Its structure requires that the people who rely on Medicare and Medicaid (and a public option) are considered only insofar as they impact profitability. They are on the bottom tier of a Machiavellian cost-benefit analysis, rather than human beings with human needs.
The media is replete with messaging from the for-profit healthcare industry. This messaging affirms the myth of scarcity and feeds the hysteria that those with good health and healthcare must hoard it in the name of “choice.” We are inundated with narratives of submissive but happy people living with disease and disability, who are grateful for a life with limitations that the well and abled would never tolerate. As a member of the sick and disabled community, it is horrifying to understand that most Americans have normalized the violence that comes from making a profit off of disease and disability.
The most comprehensive and economically efficient solution for the abuses of the for-profit system and safety net programs is, of course, expanded Medicare-For-All. This has been well documented by any number of high-profile studies (including a study by Yale epidemiologists which determined that Medicare-for-All would save 68,000 lives and $450 billion annually and the most recent CBO analysis that says Medicare-for-All would save $650 billion annually), and by the example that every other industrialized nation on Earth has provided. But meaningful healthcare legislation will require that allies in the well, abled community demand full support and accessibility for all of us. The injustices that the sick and disabled suffer cannot be reconciled with our current shallow politics of decency. To refuse to take responsibility for the pain and marginalization that these programs inflict is a collective and cruel act of ableism.
I have spent the last 7 months trying to regain my strength and mobility after a seriously displaced fracture in my fibula due to neurological weakness. Multiple sclerosis has complicated a difficult recovery. I am at a higher risk for COVID-19, so I have been few places aside from doctor’s appointments and physical therapy since the pandemic began. I’ve had little support from my community and, not surprisingly, from my for-profit health insurance. I’ve accumulated a fair amount of medical debt and a greater amount of pain and stress. I’m grateful for the support and resources that the chronic illness and disability community provides.
The pandemic state has imposed limitations on resources for the well and abled that the sick and disabled are accustomed to. The well and abled could learn a lot about self-sufficiency from the sick and disabled community. But the self-sufficiency and resourcefulness of the sick and disabled are evidence of our strength despite the lack of needed support from the broader community. It is an atrocity that the well and abled haven’t demanded the same level of humanity for the sick and disabled that they demand for themselves. The sick and disabled can’t wait for the specter of incrementalism. Casting a vote for the lesser of two evils and doing nothing more is not an act of decency; it is an act of violence. In this moment when everyone understands life with limitations, our well and abled allies must demand an equitable, accessible nation where everyone is cared for. Our well and abled allies must demand Medicare-For-All.
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Maggie Mills is an artist and assistant professor of art at Cedar Crest College.