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…]

New York City, March 19 – From club releases to EDM songs, recording/performing artist, songwriter and record producer Lachi is a long-established talent that continues to astound many with her diverse musical creativity and expression.

With millions of streams and spins, her songs have debuted on national dance charts, played on national television shows, feature films, documentaries, broadcasted on radio, and have been mentioned on sites like HuffPost, NPR, MTV, Buzzfeed, Popdust, EDM.com, and Oprah Radio. She has received awards such as an Independent Music Awards nomination and was even a finalist for the International Songwriting Competition.

Adding to several associated acts she recently performed with fellow artists like Snoop Dogg and Markus Schulz, it is an understatement to say that Lachi’s celebrity status has risen to tremendous heights. Using this incredible platform, she has committed herself to be a role model within the disability community. [continue reading…]

Khadija Bari

New York City, March 18 – October of 2019. Everything looks the same even after all these years, but there is something different. I look to my left and right, and I am walking beside the same faces I have known for a decade now. The faces of my two best girlfriends I once used to see almost every day during my undergraduate years in Lahore, Pakistan, and now stayed in contact with long-distance. We walked through the same corridor in the shopping plaza that I used to walk a decade ago. It is the same street outside. But something was different this time. This time, I held a white cane in my right hand, swinging from side to side.

I had promised my husband back in New York that I would use my cane on my trip back to the country in which I had spent my formative years. Keeping his words in mind, I had begrudgingly snapped my cane out at Lahore International Airport upon my arrival as I made my way out of the terminal to the awaiting family members who came to welcome me.

I was so self-conscious. New York had empowered me, and I knew that I was not the most odd creature making my way down the block. Not here in Pakistan, though. My white cane and I stuck out. I could feel the eyes on my back and questions following me as I passed by.

The days in my short vacation went by and I caught up with old memories and the people who occupied them. Those people, to my surprise, did not see me differently. Our conversations flowed just as carefree, full of wit, humor and sarcasm. Me walking beside them now with a cane, definitely a sight they were not used to, seemed to foster none of those questioning stares.

I believe it is because they saw what was different. Not just in what I held, but what it was doing for me. My visual impairment was something they always knew about. But a decade ago, they, nor I, knew I was categorized as legally blind, and what more, with a disability.

I remember back in 2013, when I was first told I would need to use a cane to travel safely and independently, I went into shock and denial. In the beginning, I hid my cane every opportunity I had. I did not want to stand out. I did not want to be judged prematurely by those I held in esteem. Over time, I got a taste of such independence for the first time ever. And I loved it.

And here I was again, like a little girl who needs a promise to do the right thing, to not be afraid of being prematurely judged. It did make a difference though. The Khadija a decade ago was shuffling her feet on the ground as she walked, shoulders slumped, hoping she does not walk into another pillar on campus and wishing for the earth to open up beneath her and swallow her whole. A decade later, my friends saw someone walking taller, less worried, and not asking for help in identifying steps and stairs along the way. In that shopping plaza is when I realized that I should never have been afraid of being my whole self. To say, “Yes, I am a woman with a disability,” as I walk by tall and proud.

Khadija Bari is currently a trainee in RespectAbility’s first cohort for its Women and Nonbinary Speakers Bureau: NYC, funded by the New York Women’s Foundation.