The COVID-19 pandemic challenges our notions of how “normal” life works. Work-at-home, virtual education and social distancing are giving our entire population a taste of how everyday life functions for many of the USA’s nearly 60 million people with disabilities. What typical people are unable to share in, however, is the way people with disabilities are treated as expendable, somehow not-as-fully-humans, by our political, legal and health systems, and the responses to COVID-19 are bringing those distinctions more clearly to light.
Calls are spreading across the country for withholding health care from people with chronic and severe disabilities, to expose everyone in order to “cull the herd” or to preserve scarce resources for “normal” or younger people. The states of Alabama and Tennessee have already declared that certain groups, including people like me with ALS, are not to be admitted to hospitals so that people who are more qualified for living can receive care. Official crisis guidelines in many states even call for removing ventilators from chronically ill people who use them in order to give the machines to others deemed more worthy of life.
I will be blunt: this is state-sponsored murder.
These are systematic, premeditated plans to actively take lives.
This is discrimination against people with disabilities.
These are decisions to kill people who are arbitrarily deemed expendable.
Our for-profit health care system, and those who support it, is an accomplice to these crimes. For-profit hospitals treat unused beds and equipment as unsold inventory and strive to maximize occupancy and utilization in normal times, resulting in far too few beds and other equipment available in health crises. My local hospital has 55-inch flat screen televisions for every patient, but at last count just one cough-assist machine for clearing out fluid in people’s lungs. Do we entertain people so they care less about the cost? Or do we entertain people in order to drive up the profits? We are already experiencing a massive disparity in health outcomes for poor (read: people of color) areas due to deportation fears and the excuse of treatment not being economically viable, and now people who are otherwise not typical are being told to give the ultimate sacrifice in order for "normal" people to live longer.
Germany, which has a rational health care system and a culture that believes in protecting the common good, has 4 times more hospital beds per capita. The U. S. has 1.5 times more COVID-19 cases than Germany, but we have nearly 6 times more deaths. Finland has 1/10th the cases, 1/25 the deaths. Sweden and Canada: same as Finland. Norway: even better.
To be sure, governments in those countries were better prepared for a pandemic (and didn’t deny they had one) and they have populaces who actually listen to their governments. But they also have health care systems with more reserve capacity available in times of crisis. Our system, built and enabled by our governments, has failed in the first and most vital responsibility - protecting, without discrimination, the lives of its citizens.
I anguish with my fellow people with ALS, and all those with disabilities, who now are faced with the prospect of not seeking medical care for fear of having their ventilator taken away and being left to die, alone, in a hospital. I grieve for medical professionals who are forced into choosing who lives and dies. Mostly, though, I am genuinely angry that society is so quick to judge my life, and that of others like me, as less worthy of living.
Thursday, February 15, 2018 the U. S. House of Representatives passed the #ADA Education and Reform Act. This Act, likely to make it into law, requires people who are denied access to places of business to A) write the property owner within five days to notify the owner of the violation, then B) wait 6 months for the property owner to remedy the problem before filing any lawsuit.
Let me tell you a story. I was seeking psychological therapy for my PTSD, which has significantly worsened since the onset of ALS. After months of searching for a qualified therapist who would allow my caregiver in the session as a translator (this was before my speech device), the one I found was in this building:
You may well ask, “Isn’t there a ramp?” Sure, there is a ramp. It looks like this:
It is more like a ski jump. How is it out of compliance with the ADA? Let me count the ways:
It is clear these people had no intention of fixing the ramp and were just stalling in hopes this would go away. After more than 1½ years of constant cajoling, I finally resorted to filing suit.
First came the search for a lawyer to take the case with fees contingent on a positive ruling, then a search for the shadowy owners of the building, a file-folder company called Black Rhino that only had a P.O. box address. Several months passed before the suit was ready to file, a suit my lawyer was certain would be successful. At the hearing, the defendants were represented by a team of well-heeled lawyers who argued that their clients were sympathetic but my near-accident was a one-time issue, not a pattern of discrimination. They offered to replace the missing section of handrail but nothing else.
The judge ruled in the defendant’s favor, and the ramp remains significantly out of compliance with the ADA. I still can’t make it into that building. The only way for something to get done there is for someone to get physically injured.
That was a long story to illustrate just how difficult it is today for any individual to seek remediation of even clear-cut violations. The change proposed to the ADA by the House is intended to protect businesses, while the law was intended to protect individuals. It is often impossible to find business owners to contact within 5 days. Many people in my #ALS community do not have 6 months to wait before seeking legal redress. And c’mon man, the ADA is more than 25 years old. Businesses have had plenty of time to understand and comply with the law. There is simply no plausible excuse for not knowing the law or not complying.
Contact your senators today to oppose this bill.
Indentured service and separate but equal systems haven’t actually gone out of fashion. They have just been regifted to a different group of minorities. One of the richest people in the country (allegedly) convened his Sessions at the Department of Justice to, in his best Alabaman, “I Declare” that Abbie Normal non-beautiful “employees” can be kept out of sight of the Normies and get paid in charcoal briquettes.
On December 21 2017, the DOJ put people living, and working, with disabilities on the Naughty List by rescinding an Obama-era regulation with the cuddly name Statement of the Department of Justice on Application of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C. to State and Local Governments' Employment Service Systems for Individuals with Disabilities. Since government never chooses to call something by its honest or understandable name, I will translate for you.
The Statement...… was guidance clarifying the Americans with Disabilities Act intended to end the practice of segregating people with disabilities into institutions and move us into living in the general community when it’s appropriate and reasonable. That guidance was generally interpreted as also applying to the workplace, where many employers, under the guise of training and education programs, had kept us in virtual sweatshops and paid sometimes under $1/hour. The Statement…… was used by disability advocates to eliminate segregated workrooms and demeaning below-minimum wages that often keep people from being able to enter the common workforce.
Let me be clear. People with disabilities is now the only segment of free society subject to legal wage discrimination.
Let me be more clear. THIS IS WRONG!
The whole point of the ADA is to integrate people with disabilities into mainstream society. We, that is the we with physical, emotional, intellectual and learning disabilities, statistically exhibit half the turnover, one-third the medical costs, and ¼ the time off expenses of the typical person. We not only get the job done, we are rock stars. We deserve to be included with, and paid like, everyone else.
Those eyes. Those stomachs. Terrible images of starving children haunt our comfortable lives. Whether we see pictures of fly-covered children in Africa, orphans taking up residence in South American landfills, or homeless American children picking through dumpsters, our hearts sink at the utter horror of the helpless dying unimaginable deaths.
What are we to do? Most of us just throw our hands up and try to forget. Some of us help by donating to the many charitable organizations focused on child welfare, and a few actually go where these children live, using our hands for temporary healing.
But still they die, 100s of millions every year. The images never seem to change and it seems no amount of aid will halt the dying.
The problem of child deaths from starvation and preventable disease is a great way to illustrate the difference between mercy and justice. Donating food or money to one of the many wonderful children’s charities is mercy necessary to help relieve today’s suffering, but unless we do something different today’s needs will become tomorrow’s. The answer for tomorrow is to uplift and empower women with education, economic opportunity, and equal rights and access within legal systems.
Empowering women is justice for women and children is Biblical justice. No one will fight harder or sacrifice more for a child’s well-being than that child’s mother. If that mother is educated and has an ability to earn a living wage, the child is highly likely to survive and thrive.
Up until recently American law treated maternity as a disability, as if having a child was somehow a handicap. With the Family Medical Leave Act, new parents can take up to 12 weeks before returning to work, without pay.
Think about that a moment. 12 weeks unpaid leave. That sounds like a penalty, as in “the officer was put on 12 weeks unpaid administrative leave pending an investigation.” As in “Sure, take your 12 weeks to recover from childbirth and bond with your infant pending the firm’s investigation of your future role with us.” And how many families can afford going 3 months without pay? Many women are forced to cobble together some combination of vacation time, sick days, and early return to work to stay financially afloat.
Maternity leave in the U.S. is the number one structural method of repression of women in the workplace. It unjustly limits women to two choices, depending on type of job: for white collar women, start family life well with your newborn or play the loyalty to your employer game. For blue collar wage earners, the choice is too often one of leaving the infant child with an unemployed friend or relative or regressing toward (or into) poverty as you build that critical connection with your infant.
Let’s compare our policy with a middle-of-the-road European country, Germany. A German employer must give up to 3 years maternity (or paternity, in any combination) unpaid leave and guarantee the employee the same job upon returning to work. Before you react to the unpaid bit, consider this: the employer pays nothing during the leave, but the government does. The parent on leave receives between 65% and 100% of pay for 12 months. Scandinavian countries are even more generous, also mandating fathers take a portion of time, lessening any bias toward hiring women of childbearing age.
For once I would like lawmakers leaning on “family values” to support giving parents, especially women, the time and financial opportunity to build a solid family foundation. Few things can be more essential to life, liberty, and the pursuit of happiness.
@Suzanne Boncel Heronemus and I made the Tribune this week for our start to elevating awareness of the difficulties faced by people with disabilities out in public. Our city's leaders have been wonderfully open to this conversation.
A Panera customer may have overheard management talking about their doorway, so our efforts may be bearing fruit already.
Steve needs a creative outlet since he no longer plays instruments due to ALS. He believes there can be music in words, too.
Oysters, Scallops, Conches
We are created to have abundant, meaningful life. Life where joy, beauty and love abound even in the most tragic of circumstances.
Find out how in Shells: Sustained by Grace Within the Tempest.