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Thread: Washington post ....Coronavirus shows what experts disabled people are.....

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    Distinguished Community Member Lazarus's Avatar
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    Default Washington post ....Coronavirus shows what experts disabled people are.....

    By Ben Mattlin
    April 7, 2020 at 4:31 p.m. EDT
    Ben Mattlin is author of “Miracle Boy Grows Up” and “In Sickness and in Health.”

    I keep hearing about how disabled people are panicked over covid-19. As a disabled person, I know this is true. But media reports are missing an important point about us.
    The fear and outrage are real. I was born with spinal muscular atrophy (SMA), a neuromuscular weakness, and have never stood or walked. My respiratory muscles are so weak that the slightest cold could kill me. So my risk from this dread disease is enormous. What’s more, I don’t want my right to a ventilator to be rationed away to someone younger and healthier, and deemed more deserving.

    Yet for many disabled people, a strong, stubborn vein of tenacity and even good humor runs through this wrenching sense of menace.
    On social media, a kind of bravura greeted the contagion. To some of us, the initial threat almost felt like nothing new. Many disabled people rarely venture outside anyway, because of access barriers or environmental sensitivities or the cumbersomeness of lugging an oxygen tank or other apparatus. “Wow! Today I learned that the lifestyle I’ve always lived is called shelter-in-place or self-quarantining!” joked one online friend.


    “I’m really good at not touching my face,” said another, referring to the fact that he (like me) has never been able to touch his face. We don’t shake hands, either. Plus, those of us in big motorized wheelchairs typically maintain a safe distance from other people — for fear of running over their toes.


    Don’t get me wrong. We are scared. We know we can’t entirely self-isolate. Because we rely on outside help, we’re always vulnerable to whatever germs our personal-care aides may, despite their best efforts, inadvertently bring into our homes. It’s a risk we have to take — always. We don’t have a choice.
    But we’re accustomed to this contagion-phobic territory. Welcome to the club, nondisabled people.
    The rationing of scarce medical resources — particularly the idea that ventilators could be given to young, otherwise healthy patients instead of people like me — has only mobilized us. Online petitions and even lawsuits have ensued to block such blatant and dangerous health-care discrimination. Tennessee has even singled out those with SMA — like me — for exclusion from critical care in an emergency triage. But I’m proud of my disabled brothers and sisters for being among the first to bring this to public attention and taking action.


    Like many people with SMA, I already have a lot of medical equipment at home. I have a BiPAP ventilator, an oxygen concentrator, a nebulizer to dilate my airways and loosen secretions, a cough assist machine that exercises my lungs and helps to clear them, a tracheostomy and a suction machine to suck gunk out when I can’t cough it up myself. I’m not hoarding this stuff the way some people have stockpiled toilet paper. It’s just my standard survival arsenal. Call it disability privilege.
    Yes, it’s pleasant to joke in the face of terror, to laugh at the nightmare that is before us. But if I do get sick, I hope I can stay out of the hospital. That’s vital, because there has been alarming discussion that strained hospitals could end up taking breathing devices away from people who use them regularly so that others can have them. This would be ghastly and unfair. We need and use our devices every day.
    So help us not get sick. Keep washing your hands, wearing masks and coughing into your elbows. It’s not fair to make those of us who always have to worry about catching something do all the work.




    Indeed, I can’t help hoping this crisis leaves some positive long-term changes. Continued widespread telecommuting, for instance, could help reduce the disability unemployment rate, which is twice the national average in the best of times. Expanding the availability of education and entertainment — having more museums open their exhibits to virtual views, say, and more first-run movies released to pay-per-view and streaming services — is another idea disabled people have been clamoring for for years.
    In the meantime, though, please don’t cry for us. We know all about facing risks, taking precautions and going on with our lives. That doesn’t make us less afraid. But it might make us experts.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"


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    So true. I love this! I like how he brings up the all important rationing concern. Reminds me of how I just did work online as before and people were freaking out over how different it was for them and I said "This is easy because it's my life with CP".
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    Indeed - with the telecommuting and shutdown - Look at LA - No smog haze! Makes you think...
    Alex44 AKA Skypilot Steve

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    Quote Originally Posted by alex44 View Post
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    Indeed - with the telecommuting and shutdown - Look at LA - No smog haze! Makes you think...
    Alex44 AKA Skypilot Steve
    The quiet all over the earth is allowing scientists to listen to earth’s rumblings better. I will look for the article I read but it was interesting. The quiet. And Mother Earth breathes more easily!
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    The air around here is really clear now. The sky is a deeper blue than usual. Not so many vehicles on the roads.

    Maybe we weren't meant to be quite as mobile as we are nowadays, with everyone zinging around in cars, trucks, RVs, and on planes.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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    Ann, did your Mom get her delivery? I wondered if you could order for her on Instacart using her address and zip code from where you are? Of course I don't know if they would be any faster. I haven't tried to place an order yet.
    Virginia

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    No, Virginia, her Walmart still has no openings. She doesn’t want me to check Instacart yet but it is coming. Tomorrow a neighbor is putting some groceries on her porch. She has good neighbors.

    Peter and I sent her a box today with books, chocolate and other goodies.
    ANN
    There comes a time when silence is betrayal.- MLK

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    ((((((Hugs to All))))))* ~

    So glad that you're all posting and still well during the pandemic.

    We can relate to the author's point of view, as we've been self-isolating for years to protect our children and then Jim. Thankfully, we have many medical supplies for that reason, should they be necessary for Jim.

    Just to clarify about LA smog (Hi Alex/Steve! So good to see you!):

    Since the late 70s, California has required smog checks before registration every other year. Any vehicle, which didn't pass the test, was required to have repairs to pass the test. This resulted in a major reduction in our smog. Our skies are pretty clear generally.

    On my occasional trips to the drive-thru pharmacy for Jim's meds, I notice the absence of traffic on the streets. That is significant with respect to traffic congestion and accidents, as well as pollution.

    The Earth may seem quiet now, because humans are not bustling about on it. But She is not. Right now, both coasts are being blasted with heavy rain, colder temperatures, and the Midwest may get snow for Easter. It's actually a good thing we're all forced to stay inside our homes with this inclement weather.

    Please take extra good care of yourselves. Be safe. Be well. Be COVID-19 free!

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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    Quote Originally Posted by stillstANNding View Post
    This quote is hidden because you are ignoring this member. Show Quote
    No, Virginia, her Walmart still has no openings. She doesn’t want me to check Instacart yet but it is coming. Tomorrow a neighbor is putting some groceries on her porch. She has good neighbors.

    Peter and I sent her a box today with books, chocolate and other goodies.
    ANN

    I have used Peapod for years and they are so overloaded that I can not find a spot. As soon as I do find an opening I take it. I fill the cart with expensive things to get to required $65.00. Then it is 2 weeks before I can get a delivery but during that time I keep changing product in my cart. So far it has been a 2 week wait between orders.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    That's the way I often operate with Instacart too. It helps to figure out the best way to work the system with these online ordering deals, I think.

    When I used the Safeway's online ordering/delivery arrangement, they often had a deal where you could get free delivery if you ordered at least $150 worth of groceries AND ordered 5 items from a long list they provided. I'd order the cheapest things on the list. Sometimes there was nothing on the list that I wanted, and then I'd order cheap things that I could give to neighbors here.

    I usually wouldn't order $150 worth of groceries either, and so I'd stock up on things that would keep a while, like paper products or pasta or crackers or cereal.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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