[Ohio-Talk] FW: [berkeley-disabled] If You Want To Survive COVID-19 Lockdown, Learn From The Disabled

Sat Apr 4 21:13:47 UTC 2020

I love the article too. Cheryl you make some very good points. Everyone stays safe and be healthy! See F

Sent from my iPhone

> On Apr 4, 2020, at 11:49 AM, Cheryl Fischer via Ohio-Talk <ohio-talk at nfbnet.org> wrote:
> 
> I liked this article. Though many people learn eventually to adjust to a
> disability, it can be much harder to adjust to a chronic illness.  Likewise,
> it is difficult enough for people in the general public to adjust to staying
> at home, but much more difficult to adjust to wearing masks, staying six
> feet apart,  worrying about who touched this food or the delivery boxes
> before it entered your living space, and also perhaps having to cope with
> less alone time at home. .  
> I think that the general, non-disabled and not chronically ill public have
> always recognized well the financial and social ramifications of disability
> and chronic illness. That is why they are uncomfortable, stay away, and say
> foolish things and tend to avoid complicating their own lives with the needs
> or perceived limitations of people with quote problems unquote.
> I liked the article, but I don't think that people will be more
> understanding, considerate,  or inclusive when this is all over.
> Cheryl  
> 
> 
> -----Original Message-----
> From: Ohio-Talk <ohio-talk-bounces at nfbnet.org> On Behalf Of Eric Calhoun via
> Ohio-Talk
> Sent: Saturday, April 4, 2020 8:30 AM
> To: ohio-talk at nfbnet.org
> Cc: Eric Calhoun <chargerdodger at pmpmail.com>
> Subject: [Ohio-Talk] FW: [berkeley-disabled] If You Want To Survive COVID-19
> Lockdown, Learn From The Disabled
> 
> Your thoughts on this article?  This is disabled-related.  Stay encouraged,
> y'all!
> 
> 
> Original Message: 
> From: "isis feral isisferal at yahoo.com [berkeley-disabled]"
> <berkeley-disabled-noreply at yahoogroups.com>
> To: Bay Canary Grapevine <baycanarygrapevine at googlegroups.com>,
> Berkeley-Disabled <berkeley-disabled at yahoogroups.com>,
> "emfrefugee at groups.io" <emfrefugee at groups.io>
> Subject: [berkeley-disabled] If You Want To Survive COVID-19 Lockdown, Learn
> From The Disabled
> Date: 
> Sat, 4 Apr 2020 07:24:06 +0000 (UTC)
> 
> https://folks.pillpack.com/if-you-want-to-survive-covid-19-lockdown-learn-fr
> om-the-disabled/
> 
> 
> If You Want To Survive COVID-19 Lockdown, Learn From The Disabled  
> 
> Frustrated by endless weeks of self-quarantine due to coronavirus?
> Welcome to the world of chronic illness and disability. And after all this
> is over, remember us.
> Angie Ebba - March 30
> 
> 
> One of the things you hear a lot as a disabled person is: "You're so lucky
> not to get to stay home and to go to the office every day!" As if not being
> able to leave the house because of a debilitating health condition is some
> sort of vacation.
> 
> Well, three weeks into shelter-in-place and state lockdown orders due to the
> global COVID-19 pandemic, when almost anyone who is able to do so is working
> from home and millions more are suddenly unemployed: how lucky do you feel?
> It's not a blessing or a privilege not to be able to go to work or socialize
> with other people, is it?
> No. Self-quarantine-whether from coronavirus, or because you literally are
> too sick to go out- is boring, lonely, isolating, and destructive to your
> mental health.
> It was early 2014 when I began getting really sick with symptoms like
> debilitating muscle spasms, severe pain, and chronic fatigue that kept me
> bed-bound. Doctors didn't know what was going on, and neither did I. All I
> knew was that I'd gone from successfully navigating full-time work, graduate
> school, and the parenting of two young children, to barely being able to
> dress myself or move from my bed to the couch. And yet, I still heard it:
> "Wow, what I'd give to get to stay at home in my pajamas each day!"
> As the years progressed, I got my diagnoses, including: ankylosing
> spondylitis, chronic migraine, fibromyalgia, and psychogenic non-epileptic
> seizures.. It took me years of doctors, treatments, and therapies to move
> from a place of being perpetually bed-bound to being able to leave the
> house. But even now, while I'm doing a lot better physically than I was five
> years ago, I still have multiple days every month that I spend in bed due to
> my symptoms, and even more days each month that I don't leave the house
> because of them.
> Now, suddenly, it feels like most of the world understands what I've been
> going through all these years. In the last few weeks as the pandemic has
> spread and "stay at home" orders have tightened, adults who maybe have never
> had more than a 3-day weekend at home are finding themselves cooped up in
> their house for weeks, with weeks more ahead of them. And my social feeds
> have filled up with tips from non-disabled friends on how to 'survive' this
> time of isolation.
> There's a part of me that is angry at all this. I want to snark: "But I
> thought I was lucky I get to stay home because of my chronic illness?"
> There is a stirring of anger that I didn't expect. But I empathize too. I
> remember what it was like when I was newly disabled: how the days would all
> blend together, how I mourned the presence of my friends, how desperately I
> wanted to go out dancing or to have a meal. I remember those days I'd read
> and binge Netflix for hours, eat way too much, called everyone I knew, and
> still exhausted all possible ways of entertaining myself before the day was
> even half-done. The transition from being a participating member of society
> to being stuck at home with little connection to the outside world is hard,
> scary, and lonely for everyone.
> And so I empathize with those who are learning for the first time what it is
> like to be stuck at home with limited options and very little connection to
> the outside world. That transition is hard, and scary, and can be really
> lonely.
> To those able-bodied individuals reading this who may be struggling with
> this new norm of being home, I'd suggest this is a time to learn from the
> chronically ill and disabled people whose experience you have been knowingly
> or unwittingly discounting all these days. Here's some of my own
> tips:
> Use technology to your advantage. Connect with peers on social media, form
> group chats with your work buddies, and organize video calls for virtual
> drinks with your friends. Now that everyone-not just disabled people-need
> accessible ways to meet via technology, the landscape is changing fast. You
> can participate in dance classes via Facebook Live, or listen to the
> symphony streamed to you. Take advantage of these opportunities to stay
> connected. If you're not as tech-savvy or prefer not to use social media,
> call up a friend on the phone and read to each other, or talk about a
> favorite TV show. Rest. Seriously. It's okay to rest. We are expected and
> socialized to be go-go-go constantly, our value measured by our
> productivity. But this just simply isn't true; our value comes from places
> much deeper than that, and accomplishment in life is a lot more than
> checking things off on a to-do list. This is a stressful time for a
> multitude of reasons, and that impacts your health. Listen to your body and
> allow yourself to rest. Discover your joy. Use this time to find new
> passions or to re-discover old ones. Dig out those paints that have been in
> the back of the closet for years and find some YouTube tutorials to teach
> you to use them. Google new recipes to use for the plethora of beans you now
> have. Learn a new language. All those things you have been saying that you
> wish you had time to do? Now you do. These are just some examples. The point
> is deeper than that, though.
> Learn from us disabled folks and what we have been doing. And then, please,
> remember us. When things go back to 'normal' and people can again go to
> work, leave their houses, attend big concerts, meet up for dinner or
> drinks,-remember us. 
> 
> Remember that for many of us, social distancing and self-quarantine might
> never really end. Remember what a pain it was to have groceries delivered,
> and offer to grab a few things for a disabled friend the next time you're
> out shopping Remember how much fun you had in those Facebook Live dance
> classes, and email the instructor encouraging them to continue doing them
> after the shelter-in-place orders are lifted. When you're at the art store
> ,grab some fun new supplies for a chronically ill family member because you
> have experienced first-hand how boring life at home can be. When this
> quarantine ends for you, we will still be living it. As you move about the
> world freely, remember us. Remember that we are still here, we need you as
> allies, and we'd love to hang out with you via video chat and share coffee
> with you.
> 
> 
> 
> -------
> Sent from my hardwired computer with all wireless functions turned OFF
> _______________________________________________
> Ohio-Talk mailing list
> Ohio-Talk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/ohio-talk_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> Ohio-Talk:
> http://nfbnet.org/mailman/options/ohio-talk_nfbnet.org/c16a19f%40sbcglobal.n
> et
> 
> 
> _______________________________________________
> Ohio-Talk mailing list
> Ohio-Talk at nfbnet.org
> http://nfbnet.org/mailman/listinfo/ohio-talk_nfbnet.org
> To unsubscribe, change your list options or get your account info for Ohio-Talk:
> http://nfbnet.org/mailman/options/ohio-talk_nfbnet.org/cherylelaine1957%40gmail.com