Hundreds of disability rights activists staged a raucous demonstration near the White House on Monday, and for some Jewish advocates, the chants of “disability rights are constitutional rights” and the hashtag #ADAPTandRESIST hit close to home.
“Jews live in the U.S. Jews have disabilities. Jews use Medicaid. Jews have pre-existing conditions,” said Sheryl Grossman of Baltimore, who has Bloom syndrome, a rare and fatal disorder.
For Grossman, who was not at the demonstration, the healthcare bill Congress is considering is a matter of life and death. Without insurance, the medication she takes to keep her immune system working would cost $18,000 a week, she said.
“Without these meds for more than one week, I would likely succumb to any opportunistic infection around. I would die,” she said. “Hundreds of thousands of others like me are facing the same fate.”
Many were at the Washington demonstration, organized by Adapt, a national organization. Protestors called on President Donald Trump to endorse the Disability Integration Act.
Introduced by Sen. Chuck Schumer (D-N.Y.), the bill would provide seniors and people with disabilities home and community-based services as an alternative to being forced into medical institutions.
As the law stands, insurers offering long-term care are not required to provide medical or caregiving services to people inside their homes. Rather, people must move into nursing care facilities to receive those services.
The new legislation “will allow disabled people to live their own lives in their own communities, to stay with their families, to not have to move into an institution,” said Gregg Beratan, an activist who attended the Adapt protests.
The protest comes as the Senate begins working on its version of the health care bill that cleared the House of Representatives earlier this month. The bill — aimed at replacing the healthcare and insurance measure put in place during the Obama administration and which calls for $880 billion to be cut from Medicaid during the next 10 years — would disproportionately harm people with disabilities, activists say.
“People with disabilities need to have a voice in the healthcare reform debate,” said Cara Liebowitz, who has cerebral palsy and uses a motorized scooter. “If we’re going to reform healthcare, we need to make sure that any new healthcare law does not cut fundamental services for people with disabilities.”
Liebowitz, who authors the blog “That Crazy Crippled Chick,” is a member of Adapt, but was not at the protests. She said she does not rely on Medicaid, but called that “pure luck.”
“As I get older and my disabilities change, I know relying on those services is a distinct possibility” she said.
Some 80 protestors were given $50 citations by the U.S. Park Police who maintained they were blocking Pennsylvania Avenue. A group then gathered in front of the home of Ivanka Trump, calling on her to become an “ambassador for the disabled community,” according to a statement by Adapt.
Jennifer Laszlo Mizrahi, president of RespectAbility, a nonprofit organization that advocates for people with disabilities, praised the activists’ efforts.
“There’s a tremendous amount at stake for people with disabilities, particularly people with life-threatening disabilities,” she said. “I respect people who are trying to make a positive change.”
Grossman said it is imperative for Jews to become involved.
“As Jews, we value life above all else. These policies will kill people because of who they are, many of them Jews. As Jews, we believe in removing the stumbling block before the blind, and in not putting it there to begin with,” she said in an email.
As a person with Ankylosing Spondylitis, a form of spinal arthritis and May is Arthritis Awareness Month, I applaud all those who advocate for people with disabilities. Most of us struggle financially as well as physically. Lately it seems that we are also becoming targets of prejudice. We may be disabled but we can contribute in so many different ways. Thank you for fighting for our rights and place in society.