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

Sat Apr 4 16:08:49 UTC 2020

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
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