Tatiana Lee

Los Angeles, California, March 25 – I’m a person living with a disability. I was born with Spina Bifida, and I live in Los Angeles. Like many of you, I never thought I would see this in my lifetime. As of last week, my family and I are officially on stay-at-home orders. That means no leaving the house unless necessary, like for groceries and medical needs. This type of life is too familiar to most people with disabilities, but that doesn’t mean this isn’t a difficult time. Some are self-isolated and can’t get the care they need. Having a chronic health condition makes you feel doomed to be in contact with anyone, even for everyday care needs.

I am very fortunate I have family that helps to keep me safe and healthy. It’s great to know I’m not totally isolated because I am with my mom and sister. That is not the case for many of my peers. It’s unsettling to live in a moment of constant uncertainty, especially during times of medical rationing, knowing that we (the disability community) will probably be the last to receive proper care. But we must remain strong and optimistic, and healthy during this time. [continue reading…]

Los Angeles, Calif., March 25 – The groundbreaking Crip Camp, winner of the 2020 Audience Award at Sundance Film Festival for U.S. Documentary, premieres today on Netflix. This film, which chronicles the early days of some of the disability movement’s greatest civil rights advocates, comes at an extremely important time as people with disabilities fight for equal treatment, including that hospitals are not pushed into medical rationing during COVID-19.

Read this reflection by RespectAbility Board Member Neil Jacobson, a former Camp Jened camper, and watch the documentary today:

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Matan Koch

I am a proud Jew. I am also a 38-year-old quadriplegic with asthma. Millions of Americans – myself included – are at high risk from the virus and from medical rationing. Sadly, the de facto devaluation of disabled lives in healthcare is nothing new, but there is a current push to make it policy. It is always hard to determine the best way to allocate scarce resources, but Jewish tradition teaches that every life is of incalculable worth. Doctors will have to make enough tough choices, about who is likely to survive, and already will have to make the terrible judgment about who can survive without say, a ventilator, and who will die even if they have one.

Let us not compound this challenge by asking our doctors to place subjective value on individual lives, both because it is unfair to them and because any such subjectivity would necessarily disadvantage those whose life experience is very different from that of the doctor, including people with disabilities. After accounting for likelihood of survival, first-come first-served is the only rational way to decide between two lives of incalculable value. [continue reading…]

Looking for the most up-to-date information? View www.respectability.org/covid-19.

Washington, D.C., Mar. 23 – As negotiations in the United States Senate bog down around a proposed $1.6 trillion economic stimulus package, disability advocates seek allies to ensure that the government’s response to the COVID-19 pandemic helps, rather than injures, the largest minority community in America.

The nation is facing unprecedented social, economic and health challenges at every level of society and the 1-in-5 people with disabilities are uniquely vulnerable to the disruptive consequences of COVID-19. Whether we are talking about issues of food insecurity, access to healthcare/testing, switching to telework, or life-or-death medical decisions, the disability community is deeply impacted by these events. [continue reading…]

People with preexisting medical conditions urge others to heed CDC guidance, for suppliers to ramp up medical supplies, and for medical professionals to keep them alive

Washington, D.C., March 22 – As more Americans begin to heed warnings and self-isolate in their homes, the disability advocacy nonprofit RespectAbility urges all Americans to do so without delay.

“Millions of Americans – myself included – are at high risk from the virus and from medical rationing,” said Matan Koch, who is a quadriplegic with asthma and works closely on disability issues as the director of RespectAbility’s California office. A graduate of Yale College and Harvard Law School, he knows what it means to face discrimination everywhere, including in the healthcare system. [continue reading…]

New York City, March 21 – On one afternoon in late January, I was in the locker room of a gym. As an admirer of nature and being outside, I would have loved to have done my workout in Central Park, but slushy streets are not an ideal ingredient for successful road running. Besides, none of my reliable friends and sighted guides were available to meet up for a run. Being a blind athlete, I usually train and race long distances with a sighted guide, using a fabric tether as we run in tandem. That meant that my workout was limited to the good ol’ treadmill; my least favorite piece of gym equipment.

“Are you training that dog?” a woman at the locker next to mine asked, as I toweled off my wet hair. “No, she’s my guide dog. She’s already trained.” This is a comment I frequently get when we are out and about. When I tell people that I am not training my dog, that we are an active team, I usually get the same response regardless of context, “Oh, you don’t look blind.” [continue reading…]

This week has been a challenging and uncertain one for our world. As we are unmoored by the health and economic crisis as well as temporary closures of the mainstays of our lives, the rhythms of our days feel off, and we don’t know when normalcy will return. This can be especially concerning to those of us who are Jews with disabilities, who are facing even greater unknowns. Yet, the Jewish tradition is one of continuing adaptation.

After the destruction of the Second Temple in Jerusalem in 70 CE, the rabbis realized that the world they once knew was no more, gone overnight. How were they to move forward and preserve our ancient, precious tradition? Their solution was to make Judaism portable through the compiling and codification of the Mishnah and Gemara which we call the Talmud. This innovative spirit continues today. [continue reading…]

Carly Okyle

New York City, March 20 – Cerebral Palsy (CP) is hard to discuss, specifically because there’s such a wide spectrum of symptoms and severity to consider. While mine presents itself as a limp with balance issues and problems with spatial relations, a friend of mine with the same medical designation can wear high heels without a problem; yet, she struggles with auditory processing. Same diagnosis, different issues.

One constant in this vast continuum of CP is that doctors describe it as a non-progressive disability, meaning that symptoms don’t become increasingly more severe. I used to find this comforting. I’ve since learned that although this is accurate, it’s not entirely true. [continue reading…]

Download the Memo

Washington, D.C., March 19 – New polling data of the battleground states shows that the disability community is large and electorally contested, but the issues they care about most are not being sufficiently addressed.

The phone poll of 1,000 registered voters across 16 presidential and Senate battleground states was conducted by Stan Greenberg, Ph.D., and the polling firm Greenberg Quinlan Rosner Research (GQRR), on behalf of the disability inclusion organization RespectAbility. The data was released on a webinar earlier today. The memo, cross-tab data, and PowerPoint are available to download now. The webinar recording will be available to watch with captions early next week.

The key findings of the poll include: [continue reading…]