In a widespread disaster grievously impacting people in general, people who happen to have disabilities tend to be invisible. This may partly stem from the “better dead than disabled” ethos. If a disability is considered to irretrievably diminish the quality and value of your life, why be concerned about other problems could you possibly encounter? The difficulties thrown at other people are not yours.
Anita Cameron, testifying at the 2023 Juneteenth Congressional Briefing on Inequality and Disproportionate Impacts of Covid Response on Black Disabled Communities, said “when we have disasters what happens? We’re folks with disabilities and we die needlessly…In disasters who’s more likely to die? Folks with disabilities in Black and Brown communities.”
Certainly, Hurricane Katrina was an unmitigated catastrophe for New Oleananes with disabilities, many of whom were also members of other devalued groups. Prior to the storm, many people could not act on evacuation orders because they could not get accessible transportation or could not get needed information because it was not being provided in accessible formats. As the storm bore down, many people with visible disabilities were illegally denied entrance to shelters. In some cases, this was due to fact that the American Red Cross had decided to reject people with disabilities, on the basis that they did not have enough supplies to care for them along with everyone else. This de facto rationing received virtually no mention in the press.
Nursing home residents were left to drown. At the extreme of the extreme end, one hospital dealt with the hurdles of evacuating patients with limited mobility by giving lethal injections to a minimum of seventeen individuals. Later, Louisiana responded by giving healthcare providers broad immunity for actions taken during crisis situations.
Disaster preparedness and disaster relief as well as making sure that civil rights are not lost in the shuffle are disability issues.
The Partnership for Inclusive Disaster Strategies (The Partnership) is the only U.S. disability-led organization with a focused mission of equity for people with disabilities and people with access and functional needs throughout all planning, programs, services and procedures before, during and after disasters and emergencies. As stated on its website, “The Partnership prioritizes equity, access, disability rights, disability justice, and full inclusion …[in disasters]…; prevention, planning, response, recovery and mitigation must start with and be led by multiply marginalized disabled people who are the most disproportionately impacted.” The Partnership strives to influence disaster policies and programs, so they work for all.
A resource hub for all matters related to people with disabilities throughout all phases of disasters and emergencies, the Partnership works with communities, organizations, corporations, and governments achieve and maintain equity and full inclusion in all phases of disaster management and recovery.
The Partnership’s Disability & Disaster Hotline provides information, referrals, guidance, technical assistance and resources to people with disabilities, families, allies, and organizations assisting disaster impacted individuals with disabilities and others seeking assistance with immediate and urgent disaster-related needs. In disasters such as the recent Hurricane Helene in the southeast, the hotline helped with the following:
Search and rescue coordination
Coordination of oxygen supplies and support
Coordination of wellness checks
Information and referral resources to shelters and other immediate assistance such as food and water
Durable medical equipment replacement
Medicine storage information and support
Connecting callers to the local Centers for Independent Living and other disability and aging resources
The Partnership is now responding to the urgent needs generated by even more recent Hurricane Milton.
For things you can do to prepare for an emergency (that hopefully you will never experience), click here.
Thanks to those who have contributed funds, ideas, and/or moral support, the Progressives Against Medical Assisted Suicide (PAMAS) film about the social and humanitarian dangers of legalizing medical assisted suicide is on target for completion by the end of the year. On September 16th, four interviews were filmed, each powerful in its own way. We are looking forward to a second group on November 12th. We are working on background content, and our filmmaker will complete a “first draft edit” late in November which we will review for a final edit. Then, ASL sign language interpretation will be synced in for the completed version.
2025 arrives soon, bringing a new legislative session in many states. New bills to legalize MAS will likely be introduced throughout the country. In Connecticut, for example, proponents are likely to sponsor a bill in the Judiciary Committee, which they have stated publicly they will pack with supporters, rigging the game in advance. So, it’s prime time for public discussions about the general issue. We are seeking venues in which to show the film and host discussions following it. We’re approaching libraries, medical schools, colleges and universities, law schools and any other venues that we can think of.
We are pleased to share the film widely so that people all over the country can arrange showings in their own locations. The issue of medical assisted suicide is a national (and international) problem. Many states in the U.S. will have legislation pending next year and in the future, as will Great Britain. Our film will not be specific to any particular state or piece of legislation, so it should be relevant for all areas and for several years at least. It will be available on our website or via YouTube link for people to watch individually, but the beauty of showing the movie quality version to a group is to allow for subsequent discussion and remarks. The film itself will be about 15-20 minutes long. Please contact us if you are interested.
We are also still raising funds to pay for technical help for preservation and distribution of the film; to buy a film projector to use at venues that may not have one; and to do printing and publicity, so any help that you can give would be most appreciated. Make your checks out to Center for Disability Rights. ***IMPORTANT: Write “NDY/PAMAS” in the check memo line.*** Mail checks to NDY/PAMAS, 497 State Street, Rochester, NY 14608. Donations are tax deductible to the fullest extent of the law. If you prefer to use NDY’s online donation button (https://notdeadyet.org/donate-to-not-dead-yet), you must also email the project at ProgressivesagainstMAS@hotmail.com with your name and the amount to distinguish it from other donations to NDY.
On August 31st, Carol Gill, my long time mentor and friend, passed away. Some, perhaps many readers of this blog may not be familiar with Carol’s work or role in the years leading up to my founding of Not Dead Yet. Below are the thoughts I sent to be shared on this day of her Memorial gathering in Illinois:
The closest times I had with Carol were in the late 1980s so I went looking around and found that the Online Archive of California contains a transcript* of an extensive interview with Carol, a treasure trove really. In it, she actually talked about the protest that is part of Not Dead Yet’s origin story, where we met in 1985. Carol explained:
As one part of the disability community’s response to the Elizabeth Bouvia case [an early “right-to-die” case], a bunch of us actually formed a picket line and picketed in front of the building of the southern California ACLU because we were so pissed off with them about not seeing this as a political issue and only interpreting it through medical-model understandings. We did our best first to educate them, to appeal to rationality, emotionality, whatever; we tried to dissuade them from their position, and they continued to help her die legally, so we picketed them and sang, “We Shall Overcome.” Some of them came to the windows and cried because they couldn’t believe, these good progressive liberals, that any group would be protesting them and singing, “We Shall Overcome” against them; some of them were quite shaken up.
In time, we became friends and companions. Carol, Larry, disability movement photographer Tom Olin and I used to hang out together many weekend evenings in Van Nuys, CA. More than anyone else, Carol taught me everything I knew about disability culture, disability pride and, of course, assisted suicide. She was a highly respected expert on the issue and, in April ’96, she was invited to testify about it in a House subcommittee, but she didn’t want to travel and ask me to co-author the testimony and do the trip. The weekend before testifying, I started Not Dead Yet.
The long and short of things, like for so many others, is that Carol’s intelligence, wisdom and insight set the course of more than three decades of my life. Carol continued, with colleagues like Paul Longmore and others, to carry the weight of challenging the growing push in professional journals to embrace assisted suicide based on illness and disability. Her articulation of the disability discrimination that fuels a public policy of assisted suicide has made its way into the federal courts in an ADA challenge to the California assisted suicide law brought last year by the United Spinal Association, Not Dead Yet and others, and continues to guide our struggle.
It’s Faustian – giving a nondisabled or slightly disabled person a chance to deny themselves access to food and water if they become significantly disabled and have resulting functional impairments. End of Life Choices New York, a leading supporter of legalized assisted suicide, has developed an “Advance Directive for Receiving Oral Feeding and Fluids in Event of Dementia.”
The form is intended to take effect if “1. I am unable to make informed decisions about my health care, and 2. I am unable to feed myself.” There is some ambiguity about what inability to feed oneself means. Is it inability to use utensils neatly or is it inability to get any food into one’s mouth independently? Also, since the document sweeps in liquids, it is unclear whether it applies if the person needs assistance eating but can drink with a straw.
Be that as it may, the form permits the person to choose Option A or B. Option A states, “If I am suffering from advanced dementia and appear willing to accept food or fluid offered by assisted or hand feeding, my instructions are that I do NOT want to be fed by hand even if I appear to cooperate in being fed by opening my mouth.” Option B allows for “comfort feeding” if the person wants it but with no coaxing or cajoling permitted. Food can be withheld under this option if the person is “indifferent.”
The ethicist Thaddeus Pope believes that this type of form should be available to cover conditions other than dementia such as strokes and brain injury. These just happen to be two conditions where people due to manual dexterity issues may need help with feeding at least temporarily. Pope is part of a group that has drafted an “Advance Directive for Voluntary Stopping Eating and Drinking”. Under this document, a person can indicate when it will be effective such as when “I cannot communicate with others beyond a few words, eye movements, etc.” A person in such a circumstance may be quite competent to make decisions of great complexity. Nonetheless if this box is checked, the form applies.
The core of the form is what happens “if I express the desire to eat or drink.” This depends on the option chosen but the person is out of luck either way.
The form provides that if: “I repeatedly show by words or gestures that I want to eat or drink, I want my caregivers to reassess my palliative care and (initial one):
__ continue to withhold all help with eating and drinking.
__ give me only enough food and drink for comfort even if it’s not nutritionally adequate (also known as ‘comfort feeding only’). I understand this approach will likely prolong my dying process.”
Thus, the form’s title is a sham. It has nothing to do with voluntary stopping eating or drinking. It is about denying access to sustenance based on disability regardless of what the person may want at the time.
Pope isn’t sure about the enforceability of the form but he appears to find merit in putting it out there anyway.
The ethicist Jacob Appel in trying to be dispassionate about the matter has stated, “whether to respect such instructions is a challenging ethical dilemma. It will likely be rendered even more fraught when legal cases begin to arise in which patients who signed such documents in the past and have since become significantly impaired vocally demand food and drink—forcing loved ones and physicians to choose between following the advance directive…or honoring the patient’s current pleas.”
It has been argued that a competent “current self” should be able to make decisions to determine the fate of an incompetent “future self” and it denies autonomy to the “current self” to limit him in doing so. What about the autonomy of the “future self” who may have different views? It is not a solution, as some have suggested, to respond to the food requests of a “future self” with so-called “comfort feeding”. That is not respecting autonomy. It is deceiving a person into thinking he is being nourished when he isn’t.
To my mind, the current-self/future-self dichotomy is false. There is only one person even though that person may go through changes. For example, there are many instances where a person believes they would never want to continue living if they found themselves in a particular condition in the future, such as quadriplegia, but then see value in their life once they actually find themselves in such a condition. Appel calls this “bargaining down” as if the person is settling for a lesser existence. It is more properly known as the disability paradox.
The forms supported by Pope and others pervert the concept of advance directives. First, although some people reach a point where they can’t make medical choices, virtually everyone capable of oral feeding can express whether they want to accept food or not. They can do it in the moment and make shifting decisions from one time to the next. The forms themselves recognize this. Unlike true advance directives, they contain explicit provisions overriding a person’s expressed desires.
Proponents have argued that spoon or hand feeding is “medical treatment” and therefore can be refused in advance. These arguments are spurious. Spoon or hand feeding is simply assistance with activities of daily living much like help in dressing or showering and indeed is less intimate. Countless thousands of individuals incorporate such help into their daily lives.
Moreover, if spoon feeding is designated as medical treatment, how long might it be before proponents move past advance directives allowing the current self to withhold oral food and liquids from a future disabled self to allowing surrogate decision makers to do the same thing – in the name of “compassion,” of course?
In August 2024, Disability Rights New York filed a legal challenge to Nassau County’s Mask Transparency Act, a new law intended to deter hate crime by making it illegal for groups gathered in public to wear masks to hide their identity. The law allows exceptions for religious and cultural purposes and “to protect the health and safety of the wearer.” The New York legislature is considering a similar mask ban statewide. While the governor expressed a desire to exempt masking for prevention of illness, they have yet to clarify how the exemption could work in practice.
Some police departments oppose mask bans, because even with a health exception, officers who are not medically trained are put in the perilous position of having to identify “illegitimate” medical use. Because a health exception relies on an officer’s ability to judge intent, these laws are dangerous to anyone who wears a mask to avoid catching or spreading illness.
Before 2020, nineteen states had some restriction on mask-wearing. Several states don’t ban masks outright, but increase penalties if a perpetrator wears a face covering while committing a crime. Most of these laws date from the early to mid-20th century. In the 1940s and 50s, anti-mask laws reassured the federal government that states were working to quash the KKK, while Jim Crow laws and racial segregation remained intact.
When the COVID-19 pandemic began, some states repealed their pre-existing mask bans. Other states left laws in place, but enforced them selectively during the public health emergency. Most states had some form of mask mandate for at least part of 2020-2021.
Based on data from 2009-2021, mandates to wear a mask have mixed results. This is likely due to different virus types, wide variance in mask quality, inconsistent day-to-day use, and the difficulty of separating the effects of masking from other strategies, such as indoor ventilation. Nevertheless, science is clear that for any given individual, a high-quality (KN95 or better) mask dramatically decreases the likelihood of contracting or spreading a respiratory virus.
The plaintiffs in the DRNY lawsuit wear masks because their disabilities put them at high risk for severe consequences from respiratory illness. Not only are disabled and immunocompromised people at greater risk from COVID-19 and other pathogens, but we have also seen the number of disabled people grow as more people are diagnosed with Long COVID.
Simply wanting to avoid sickness is sufficient reason to wear a mask. Simply wanting to avoid sickness is not sufficient reason for police to stop someone and ask whether they intend to commit a crime.
Yet under model mask ban bills, a group wearing masks in a theater could be charged with a misdemeanor, if an officer incorrectly believed they intended to hide their identity. People with disabilities (especially the 80% of disabilities that are invisible) fear being arrested at protests and other gatherings, since police have no clear standard to judge whether they are protecting their health or concealing their identity.
Despite the continuing threat of COVID-19 – the nation’s fourth leading cause of death in 2022 – some states are proposing mask laws even more restrictive than the pre-2020 status quo. North Carolina, for instance, passed a mask ban in June 2024 with a narrow exception allowing a “medical or surgical grade mask” for “preventing the spread of contagious disease,” replacing a broad pre-2020 exception that allowed “a mask for the purpose of ensuring the physical health or safety of the wearer or others.”
When lawmakers propose a mask ban in response to hate crime, it’s assumed that detaining masked individuals will prevent more horrific hate crimes in the future. Many experts on hate crime, along with survivors and advocates, question this assumption.
Risks of increased police surveillance are especially high for people of color, who are already disproportionately stopped, questioned, subjected to faulty and biased facial recognition technology, searched and harassed by officers and strangers. Even when mask-wearing was common early in the pandemic, people of color were more likely to be incorrectly perceived as having criminal intent while wearing masks to protect themselves and others.
Clean air would improve safety for people who are medically at risk, along with their families and care workers. In the absence of a major national effort to improve air quality, however, laws that stigmatize masking will inevitably stigmatize disabled and immunocompromised people trying to access daily life, from medical care to shopping to engaging in protest. Worse yet, a disabled person who is mistakenly arrested while wearing a protective mask could be brought to jail, only to face the bitter irony that jails are among the most hazardous places for spreading respiratory illness.
If and when another respiratory pandemic hits the United States, states may decide to repeal or selectively enforce anti-mask laws yet again. Reactive policy-making, snapping back and forth from requiring something to banning that same thing, has concerning implications.
As a community of people with disabilities, we urge policymakers to avoid reactive policy: consult experts, invite people with disabilities to speak from lived experience, and focus on long-term strategies that include everyone.
Kristi McGarity is a member of the Long Term Services and Supports – Healthcare Subcommittee of the National Council on Independent Living.
