There are so many nightmares with this pandemic. One of them is the prospect of catching Covid-19, being hospitalized and then being deprived of loved ones and caregivers in your final days. This tragedy may at times be unpreventable. But according to several discrimination complaints filed across the country, it did not have to happen that way. The following is an article from NPR … Continue reading Dying Alone
Joseph Shapiro __________________________________________________ “I’ll take all night if I have to!” So shouted 8-year-old Jennifer Keelan on March 13, 1990, as she hoisted herself up the 83 steps of the US Capitol. It was an exhausting journey on her hands and knees, but her muscular dystrophy (and the lack of a ramp) gave her no choice. She was joined that day by dozens of other … Continue reading Rationing Away Our Health Care
Note: This article originally appeared in the MS Connection Blog https://www.msconnection.org/Blog on May 8, 2020. ___________________________________________________________________________________________________ This is boring! Humans were not meant to stay inside all day, every day. But the current pandemic has driven us to this universal isolation, and we are feeling its consequences. It can be much worse for those of us with MS, for several reasons. Depression is often a … Continue reading Zooming Together
Joseph Shapiro, Correspondent NPR Investigations April 15, 20205:00 AM ET Heard on Morning Edition https://www.npr.org/2020/04/15/828906002/people-with-disabilities-fear-pandemic-will-worsen-medical-biases Continue reading People With Disabilities Fear Pandemic Will Worsen Medical Biases
I am not the only one in the family with a disability. My sister , Susan Faitos, was born with XLH. This is a rare disease that causes weak bones and skeletal deformities, along with hearing loss. After a lifetime of feeling helplessness and pity for her, I am proud to say that the “helpless” part has now been removed from my vocabulary. I just … Continue reading “Fight Songs” Have even more Meaning When You’re Fighting Disabilities
It’s tempting to delude ourselves: Because we have MS, we’ve somehow already gotten our “share” of bad medical luck and the universe would not dare dump anything more on us. Then we shake ourselves awake and realize that because we are in that group of people who have underlying medical conditions, we need to pay particular attention to how Corvid 19 may impact people with … Continue reading MS and the Coronavirus
Photo from the New York Times, April 8, 2020 __________________________________________________________- And I’m sure many other voters with disabilities didn’t make it, either. But the ones that did risked their lives to vote. The question is, why were they forced to make that horrendous choice? If ever there was a reason to advocate for mail-in voting, this is it. If ever there was a reason … Continue reading I Couldn’t have Made it Through that Line..
As indicated in this bulletin from the National Multiple Sclerosis Society, the Department of Health and Human Services has issued new guidelines for nondiscrimination in the wake of the coronavirus. While these guidelines are useful, in my opinion they are fairly vague (as is most of the language in the disability rights laws). The important thing will be how they are interpreted and ultimately followed. … Continue reading Aministration Releases New Guidelines Regarding the Corona Virus and People with Disabilities
Depressed, stuck at home and looking for some inspiration? You can’t do better than “Crip Camp,” a documentary that is currently streaming on Netflix. Produced by Barrack and Michelle Obama, the movie traces the development of “Camp Jened,” a summer camp created for disabled teens in the late 60’s in upstate New York. It is an unvarnished look at the reality of living with a … Continue reading “A Hopeful, Joyous Documentary With An Activist Spirit” (Marshall Shaffer)
https://www.huffpost.com/entry/coronavirus-healthcare-rationing-medical-ethics-disability_n_5e7a2b0dc5b6f5b7c54bb117 The above column in the Huffington Post caught my attention, and I’m sure it speaks to the fears of many people these days. We with disabilities have spent many decades and sacrificed a lot on our way to legal equality. That’s why it is increasingly disquieting to hear public officials “reassure” the American public that “…it’s mostly just the elderly and those with underlying health … Continue reading Who is “Disposable” in this Pandemic?