On the eve of the thirtieth anniversary of the Americans with Disabilities Act (ADA) and in the midst of an unprecedented global pandemic, the National Council on Independent Living (NCIL) mourns the deaths of those who have died as a result of the denial of medical services, braces itself for more casualties to come, and condemns the inhumane practice of rationing healthcare that, although it has always been a concern for the disability community, has become an all-too-grim reality during this era of COVID-19.

The recent demise in Austin, TX, of Michael Hickson, a Black father of five who lived as the result of a cardiac incident with both spinal cord and traumatic brain injuries, has spearheaded a necessary conversation regarding the value placed upon life in the US. Hickson, who was taken to the hospital as a result of contracting COVID-19 in the nursing facility where he resided, was denied medical care, food, and water, ultimately starving to death, alone, on June 11th, 2020. The decision to deny Mr. Hickson treatment was made by his medical team and his court-appointed guardian and against the wishes of his family, who weren’t notified of Mr. Hickson’s death until a day after he passed away.

Michael Hickson’s life mattered – to his wife, to his children, and to his community. It should have mattered to the medical professionals charged to care for him. It didn’t – audio recordings of Mr. Hickson’s medical team clearly reflect that, because of his disabilities, they felt Mr. Hickson would be a waste of treatment. As states throughout the US move forward with initiatives intended to prioritize who during the pandemic will get care and rationalize about who will be denied, people with disabilities – who are disproportionately being impacted by COVID-19 at alarming rates – are left to grapple with the grim reality that healthcare settings, which are intended to provide care, are both a system of inequity and, as is the case with Mr. Hickson, an instrument of death.

The disability community deserves better, Michael Hickson and his family deserved better, and because of this, NCIL intends to file a complaint with the Office of Civil Rights (OCR) that will entail a request that they conduct a thorough investigation into the circumstances – and the myriad ADA violations that occurred – leading up to Mr. Hickson’s death. NCIL also seeks out legislative and organizational partners in the interest of joining forces on behalf of the disability community to ensure that, not only is the unfortunate trend towards medical rationing curtailed during the pandemic, it is seen for what it is by the general public: an unethical and barbaric practice that has no place in the US, moving forward.

The National Council on Independent Living (NCIL) is saddened and angry that, just over two weeks after releasing a statement on police violence, the country is once again mourning the murder of another victim, George Floyd.

NCIL recognizes that, in the midst of so much inequity and injustice that has only been further revealed by Mr. Floyd’s murder, more people than ever – including those of with disabilities – are looking for ways to make their voices heard in the interest of both breaking the cycle of police violence and effecting systemic change. NCIL acknowledges that, although virtual and other means of non-in person activism have often been dismissed as “less than” within the disability community, all modes of advocacy have merit and, in many instances, actions taken via social media have resulted in positive outcomes, not just for people with disabilities, but for all.

With that in mind, NCIL’s Taskforce on Anti-Racism and Equity would like to amplify the resources and guides already in existence that are intended to support individuals with disabilities with in engaging in activism from both home and in-person, including the following.

The National Council on Independent Living (NCIL) acknowledges that police violence, which is the cause of death for one out of every 1,000 Black males – a rate that is 2.5 greater than that for white males – is a public health issue that intersects with the disability rights movement via several different and troubling avenues:

• the traumatization of the Black community that occurs as a result of being subjected to the prevalent images of Black people being assaulted and even killed on live TV
• the aggravation of anxiety and other related mental health conditions as a result of constant monitoring by law enforcement in one’s own community
• the onset of acquired disabilities as a consequence of police violence that does not result in death
• the reality that police violence is a mitigating factor in overall health disparities prevalent within the Black community that, ultimately, impact overall life expectancy rates for Black people

We make note of this issue in light of recent high-profile instances of violence against Black people in the US by active / off-duty / retired law enforcement.  However, we recognize that outrage is no longer a sufficient response and commit to exploring proactive ways that we can support Independent Living to develop the means necessary to provide peer support and individual / systems advocacy to consumers, both prospective and actual, who are impacted by police violence.

We recognize that Black people (as well as Indigenous and other people of color) may not even feel safe to engage in systems advocacy regarding police violence without possibly putting themselves at risk to even more police violence.  In light of that, our newly announced Presidential Taskforce on Race and Equity will prioritize critically examining the barriers to systems advocacy that Black, Indigenous, and other people of color experience with the intent of bringing their findings, feedback, and action steps back to NCIL – and to Independent Living.

NCIL stands in solidarity with advocacy organizations across the country in condemning all unwarranted police violence against Black people, such as Ahmaud Arbery, who was killed by a retired investigator in February; Sean Reed, who was killed by Indianapolis law enforcement officers last week; Breonna Taylor, who was killed as the result of a botched sting operation; Dameon Shepard, who was terrorized in his home by an off-duty sheriff this past weekend; and countless others whose stories may or may not make it into the conscience of the US public.

Congress is working on their next big COVID-19 relief package, and we expect to see draft language from the House of Representatives soon. While each of the four Congressional COVID-19 packages so far has contained important pieces, we have yet to see a package that meaningfully takes disabled people’s needs into account.

Disabled people are disproportionately impacted by the COVID-19 pandemic. Many of us are at risk of severe symptoms and complications if exposed to the virus. We are facing significantly increased barriers and discrimination that are threatening our health, our safety, and our lives. It is simply unacceptable to leave us out of the COVID-19 response.

The Paycheck Protection Program and Health Care Enhancement Act was signed into law on April 24, 2020. This emergency legislation provides $484 billion in financial relief. A majority of that funding – over $300 million – will go into the Paycheck Protection Program (PPP), which will give loans to small business owners to stay in business and retain their employees during the COVID-19 pandemic. It also adds funding for hospitals and other healthcare providers, COVID-19 testing, and the Small Business Administration’s disaster relief fund (and expands who is eligible for these funds). These relief efforts are all important and needed, and we are glad to see this package pass Congress.

Congress is already working on their next big COVID-19 relief package. And while each of the four Congressional COVID-19 packages so far has contained important pieces, we have yet to see a package that meaningfully takes disabled people’s needs into account.

Disabled people are disproportionately impacted by the COVID-19 pandemic. Many of us are at risk of severe symptoms and complications if exposed to the virus. We are facing significantly increased barriers and discrimination that are threatening our health, our safety, and our lives. It is simply unacceptable to leave us out of the COVID-19 response.

Take Action!

Congress is currently working on the next big COVID-19 relief package. Congress needs to hear from their constituents – again – about the importance of including people with disabilities in their COVID-19 response, and the key priorities that must be included.

Since many members and staffers aren’t in their offices to take calls right now, we recommend using email and social media. Please contact your Members of Congress today and tell them what you want to see in the next package!

Last week, the Food and Drug Administration (FDA) finally released their final ban on the electric shock devices used to shock disabled people at the Judge Rotenberg Center. The rule was released on Wednesday and published on Friday. The rule, which will go into effect after 30 days (on April 6), will end the use of contingent shock devices to punish unwanted behavior, which JRC calls “treatment”. As a national cross-disability organization that advocates for the civil and human rights of people with disabilities, the National Council on Independent Living (NCIL) applauds this ban.

JRC, in Canton, MA, is the only facility known to use these devices. It is believed that currently nearly 50 individuals are subjected to being tortured by these devices, which includes having electrodes strapped to their bodies, 24 hours a day, in order that painful shocks can be delivered by staff armed with remote control activators. All JRC residents, the majority of whom are reported by visitors to be people of color and most of whom are from outside Massachusetts, are subjected to intense behavioral controls, and contingent shock is the most egregious of the abuses. The devices are also known to malfunction in common conditions such as the steam after a shower, and to sometimes be activated by the wrong button. After the rule goes into effect, JRC will have 6 months to transition people off the devices.

By Gabe Mullen, NCIL Policy Intern

“People with disabilities versus the environment” are not words you probably thought you would ever hear together in a sentence. They’re certainly not words we should want to hear in a sentence. After all, the environment is in trouble, and we should want to save it. And for people with disabilities, the world is still largely inaccessible, threatening our freedom and our ability to enjoy life, liberty, and the pursuit of happiness.

What could possibly pit these two worthy causes against one another?

Across the country, cities and counties are banning plastic straws and bags, or instituting “bag taxes”, citing the fact that such items, which don’t decompose and are typically used only once, end up in our oceans where they threaten wildlife. Currently, there is a bill containing a plastic ban in Congress, sponsored by Senator Tom Udall of New Mexico and Congressman Alan Lowenthal of New York.

Plastic straws and bags are just a convenience, proponents argue. No one really needs them. At the end of the day, the only people that really stand to lose from such bans are the corporations that make the plastics, right?

Wrong. Let’s unpack what these bans mean, starting with straws.

• March 24, 2020; 3:00 – 4:00 p.m. Eastern
• Register online

As we approach the 30th anniversary of the signing of the Americans with Disabilities Act, we have an opportunity to reflect on the history of our movement, who helped forge the path toward equality and integration, and what work remains to be done. As we move beyond 30 years of the Americans with Disabilities Act, we raise our eyes towards building equity in our movement. Leaders who have played critical roles in mentoring disabled activists, especially lifting up multiply-marginalized disability activists, will reflect on the history of the movement and their mentorship experiences in this roundtable. Activists on the panel who are helping our movement look toward a more inclusive, more equitable future for the ADA will set out a vision for the work yet to be done.

This hour-long conversation will feature a panel of presenters highlighting their unique perspectives about where we have been and where we need to go from here.