Happy Holidays, everyone! My bi-religious family, as my cousin deemed us, celebrated a wonderful Christmas Day yesterday and look forward to a lovely Hanukkah with my family this weekend. I hope you and your loved ones have a merry celebration of whatever holidays you celebrate this time of year.

Once the holidays are over, though, a lot of us feel incredibly anxious about what will be coming in the new year, myself very much included. In my personal, anecdotal experience, a lot of spoonies seem to be pretty Type A. We like to have plans in place to try and fix the thing we’re upset about. We research new treatments and try new doctors and ask people in message boards for advice. So when we’re worried for ourselves or our loved ones, or our country in general, we want to do something. We want to march and protest and speak for what’s right.

It’s hard to do that when speaking too long leaves you winded, and being out of bed for more than a few hours a day makes you sick. It can be frustrating to think that we’re so limited in our ability to fight against what we believe is so wrong.

That’s the reality of any group of disenfranchised people. It’s harder to speak out than it is for other people. That’s how they stay disenfranchised.

But it’s becoming easier to make our voices heard now, thanks to the internet.

Say what you will about Hashtag Activism or social media do-gooding. Maybe it feels performative, but it can get results. The ALS Ice Bucket Challenge raised $115 million dollars and led to a 30% increase in support of the ALSA. Since that time, 15,000 patients have been helped by ALSA chapters per year and 3 new genetic breakthroughs have been made using the research funding.

Hashtag movements are harder to quantify as easily, but I would posit there is a direct line from the start of #YesAllWomen to new wave feminism, as well as #BlackLivesMatter to a broader understanding and discussion of police brutality. Those movements didn’t start and will not end with these hashtags, but they were rallying cries to galvanize supporters and provoke deeper thought. A leader’s voice cannot be heard without a mass of people elevating them. As spoonies with limited resources, we can be part of that mass. And we can do it from the confines of our bedrooms.

Yes, purely performative allyship — for instance, when a white person posts about how they were nice to a minority or veteran on social media just so they can get accolades — is empty, reductive, and even harmful. So we have to make sure that our job, as people with privilege, as people who want to be allies, is not necessarily for us to speak, but to tap others on the shoulder and say, “Listen.”

So how do we stand behind the movements we support when we can’t go beyond the reach of our heating pad’s electric chord? Here’s a quick guide to get you started.

1.) If you have not already, create a twitter account. But don’t be an egg! Upload a profile picture, create a bio, follow people you’re interested in, and make it as personal as you’re comfortable making it. But don’t put up any private information you don’t want the very public internet to know. Now, start tweeting! It doesn’t have to be a masterpiece. Write something you’re thinking about. Maybe you saw a movie you really liked, or you read a really great blog (no pressure, but I am right here). Engage with other people, and have fun! There’s an amazing network of spoonies on twitter, and a network of just about any interest you might have (I have a twitter account just for my Disney obsession). It’s fun to find your personal Land of Misfit Toys. Just have a little patience while you get the lay of the land. You won’t get followers right away, and you won’t find your niche right away. Consistent tweeting is the key to gaining followers (hard for us spoonies, I know, that’s why my follower count isn’t that high), but you don’t need a massive audience to make an impact. Although, fellow spoonies are almost always good for a follow back!

Remember to ignore the trolls. It does you no good to engage with them.

2.) Follow people who write about the causes you’re interested in. Not only is following people the easiest way to get followers yourself, it’s also how you’re going to become informed about the actions you can take. Re-tweeting the things people write that resonate with you can leave an impression on your own followers who might be following you because of different shared interests, or because they’re your friends or family in real life. And, again, high numbers of “retweets” and “favorites” on a tweet send a message of support, as well as increases the likelihood that it gets mentioned in a news article. On the other end of things, people you follow will probably retweet things that they like, which will help you to find more people that you like. Cool cycle, right? In case you want help getting started, here’s a list of a few of my favorite people to follow on twitter:
George Takei – Yes, that George Takei. He participates in a lot of activism, especially on twitter, and he’s a really impressive and succinct writer.
Emily Ladau– Disability activist writer
Amadi Talks – Recent favorite who tweets about racism, homophobia, ableism, etc.
Anne Theriault – Feminist media blogger
Ijeoma Uluo – Social justice writer and editor of The Establishment
Shaun King – Social justice writer for New York Daily News
Travon Free – For some levity in your socially aware tweets, comedian and former Daily Show Writer
Lin-Manuel Miranda– He’s just a joy to follow on twitter. I highly recommend for when you need a pick-me-up.

In general, though, if you just search a keyword or a hashtag you’re interested in, you can find some good stuff pretty quickly.

I also recommend following organizations you support, for instance the ACLU, National Resources Defense Council, Planned Parenthood, National Disability Rights Network, etc, because they will post more specific calls to action. You can also do this on Facebook by liking their pages. Facebook can also be a great tool for sharing content, although it can be even more of an echo chamber than Twitter. Regardless, it’s still a way to share information and show support, and a way to read Dan Rather’s eloquent posts.

Most prolific “tweeters” have blogs, so if you find someone who resonates with you, you can read their articles, and possibly learn more about how to help. For instance, they can alert you when there’s a harmful measure going through congress or a harmful candidate about to be appointed. That’s when you….

3) Write and call your congressmen.

Trying to change minds and supporting the voices that are traditionally unheard is so important, but it is only the first step. The next step is to turn it into legislative action and pressure our representatives to support us. A lot of groups, like ACLU and NCJW (National Council of Jewish Women) have petitions ready to sign and automatically send to congress. This is simply a matter of filling out your name and pressing “submit.” So it’s the easiest to do on a day you have no spoons and/or debilitating brain fog.

However, it is even more effective, if you’re really feeling your zofran that day, to write or call your congressmen personally. It doesn’t have to be a speech that could be inserted into the last ten minutes of a movie, it just has to express your viewpoint. Phone calls can be most effective because there’s not an option to “not open” like there is with an email or a letter. Making a phone call can be way scarier than writing a letter or an email, but even if you babble like an idiot (which I usually do), it just gets marked down as a glorified check mark in the “for” or “against” column, so your representative knows what the constituents who re-elect them want. That’s the beauty of our vote. Even if representatives rely and cater to lobby groups and Super PACs for re-election money, that’s all useless if their constituents don’t want to vote for them. If we are vocal enough, we can pressure them into doing the right thing for the sake of their own job security.

Here’s the link to finding your House Representative, here’s the contact info for your senate members, and you can find your local officials by googling “elected officials” and your zip code.

4) Vote with your dollars.

This doesn’t just refer to donating to the charities you support or the politicians who speak for civil rights, although that is important. However, not everyone has enough disposable income for that. We do get to choose what businesses we patronize, though. If you want to see more women, people of color, disabled, and LGBTQ representation in movies and television, go see movies that have that representation opening weekend. Watch those TV shows when they air, or DVR them if you are able, and support them on social media. Refuse to see movies that white wash, like The Great Wall, or misrepresent disabilities like Me Before You. Support businesses that actively block their ads from generating revenue for bigoted sites like Breitbart News. That list can be found by following the twitter account Sleeping Giants. You can easily participate as a Sleeping Giant yourself, all it takes is a few tweets and a screenshot!

THE SG UPDATED CONFIRMED LIST: https://t.co/4TYRUOj9sv
THE SG FAQ: https://t.co/wfSUQBjOgj
REMOVE ADS YOURSELF: https://t.co/V4V8qWyyv3 pic.twitter.com/JszlNFryKY

— Sleeping Giants (@slpng_giants) December 16, 2016

Research the companies that you most regularly patronize (simple google search should do it), and, when you have the option, choose the ones that support equality and avoid the ones that don’t. We may have less buying power than corporations or Super PACS, but, again, this is a numbers game, and we exercise the power we do have. Just like a politician needs everyone’s individual vote, companies need a mass of people spending their individual dollars.

5) Have discussions that challenge others and yourself.

We’ve all had discussions that change our views, although it usually doesn’t happen in the moment. It takes time to resonate and make us reconsider previously held beliefs or assumptions. When you learn things from people speaking out in their blogs or social media, you can then verbally express those ideas with the people around you who wouldn’t otherwise have encountered them. They may do the same thing for you. Remember to be respectful and open in your discussions, otherwise the conversation will turn into a bickering contest whose only achievement is making both parties feel angry and frustrated. At the same time, we must stand firm against intolerance and disrespect. Keep learning. Keep questioning. Keep talking. That is how we make progress.

I’ll end this post with a mantra my aunt gave me: “I can not always lead the charge, but I will always be standing behind you.”

P.S. If you follow me on twitter @spoonshares, I will definitely follow you back.

The post How to Be an Activist or an Ally When You Can’t Get Out of Bed appeared first on Spoon Shares.

I have a mission for you.

It’s happened. Donald Trump is our president-elect, there will be a Republican majority in the House and Senate and an open vacancy in the Supreme Court.

Our health care is at risk.

If you’re like me, you’ve spent the last two years hearing Republicans promise to “repeal ObamaCare Day One” with a churning stomach. Not that churning stomachs are out of the norm for a lot of us. We’re the chronically ill, and nausea is often a part of the package deal. But this was a different sort of nausea.

This was fear.

Fear that the items in this new law that literally save our lives —  the pre-existing condition clause, the ban on lifetime and annual caps, the requirements for increased mental health coverage, etc — will be whisked away in a cloud of partisan dust in the political tug of war that often feels like it’s more about one team winning and less about the lives they represent.

I can honestly understand how that happens. When there are people whose job it is to literally “whip” congressmen into the party line (who consequently control their funding), it’s easier to remember the demands of your colleagues than the demands of your constituents.

So if we want the parts of the Affordable Care Act (which is the same thing as ObamaCare, in case anyone was confused about that, further referred to in this article as “ACA”) that are so vital to our continued prosperity and livelihoods to remain intact, we have to make it personal. We have to tell our stories and help our representatives understand the real consequences if they fail to replace the ACA with a substantive measure that protects its disabled citizens.

I’ll go first.

I was a perfectly healthy woman until I wasn’t. I was studying my area of passion, Dramatic Literature, at a wonderful university, and I was still in the “what do I want to be when I grow up” phase of my life when, while studying abroad at the age of 21, I got sick. And I didn’t get better. I took a semester off, thinking it would take at most a month to figure out what was wrong and get back into my normal life.

That was five years ago.

It took six months to get my first diagnosis, gastroparesis (paralysis of the stomach). It took two years to get my second, dysautonomia (malfunction of the autonomic system), and finally, four years later, the underlying diagnosis of Ehlers Danlos Syndrome (a genetic condition where my collagen is too loose, which creates problems throughout the entire body). There is no cure, only symptomatic treatment. I am going to be sick for the rest of my life. I am going to need extensive health care for the rest of my life. I have eight medications (currently), five specialists, a feeding tube, a central line, a home care company, and a gastric pacemaker.

I became sick while I was still on my parents’ health insurance. I knew that when I aged out of their plan, I was going to need a new health insurance plan, and that those plans could either deny me or charge me unaffordable premiums because of my pre-existing condition.

The Affordable Care Act’s ban of discrimination towards people with pre-existing conditions truly saved my life. I honestly can’t even begin to imagine what would have happened to me without it.

Insurance companies lose a lot of money on me. They’d rather not have me. The fact that they try and deny every claim I make, before I call and insist several times that it’s covered in my plan, proves this.

Many people have tried to assure me that the pre-existing condition clause could never go away. It’s too popular and makes too much sense.

Of course, a lot of those same people assured me Donald Trump would never be president. Or even win the Republican Primary. My life and the lives of people like me are too dependent on this Act to trust the word or common sense of politicians who have yet to agree on one concrete plan or provide solid language that will truly protect disabled people such as myself after they “repeal ObamaCare on Day One.”

Even if insurance companies are forced to accept me (or other 26 year olds with chronic illness) despite my pre-existing condition under whatever new plan happens during the next administration, I worry about the drop in other regulations the ACA put in place. The discriminatory overcharging of women is one concern. The lifetime and/or annual caps are a bigger one. My family knows from personal experience the stress that this can cause. A few years ago, my cousin had Leukemia, and his treatments cost enough that he was nearing his insurance plan’s lifetime cap of one million dollars — yes, relapsing cancer can easily cost that much. I remember our family sitting at Thanksgiving dinner, worrying about hitting this cap, and what we would do to protect my cousin if this should happen.  Sadly, he passed away before this became a problem.

I get my daily calories from an IV bag full of a liquid that costs, at my insurance company’s negotiated rate, about $200 a day to formulate, produce, and deliver to me. That’s just one aspect of my regular, expensive, lifelong medical care. I could hit a million dollar cap at an alarmingly fast rate.

And before you feel too bad for my insurance company, let me remind you that they made a net income of $2.4 billion in 2015, which was up from $2.0 billion in 2014. I paid them for a service I didn’t need for 20 years before I got sick. Believe me, I wish I didn’t need their services now.

I am afraid for the people with chronic illness who turn 26 under the Trump administration (or younger, if the ACA is repealed). I am afraid for myself. I am afraid for the many who are like me. I am afraid that our health care will be taken away. I am unable to work, I am still waiting for my disability hearing, and, even if I am approved, Medicaid is becoming more and more restrictive in my state. I am afraid of not being able to pay for my life.

I guess the question I would ask the politicians who are considering striking down these measures, that admittedly make insurance companies’ lives a little bit harder, would be this: is my life worth saving?

Is yours? Because if you are reading this and have the good fortune to not have a serious health condition or a loved one who does, let me assure you, that could change tomorrow. I was perfectly healthy until I wasn’t.

If you think you and your loved ones’ lives are important, please, I literally beg you, write and call your representatives (you can find their names and contact info here) and ask them to keep the parts of the ACA that you feel are important and vital to our well being (read more about the law here.)

If you are someone who has personally been “saved” by ACA, whether because of the new regulations on insurance companies or the subsidies that allowed you coverage in the first place, I urge you to scream it from the rooftops. Consider this your Twilight Bark Alert. You can blog on this website, or on Medium, or talk about it on your social media, or with the people you interact with in your daily life. More pressingly, I urge you to direct your megaphone and your personal experiences to your elected officials. We can put a face and a personal life to their policy arguments. Paul Ryan has a specified area of his voicemail just for the ACA. I urge you to use it. If you’re like me, and suffer from Chronic Voicemail Babbling Syndrome, I suggest writing down a few notes (or even a full script) before making the call. It helps a lot! Also, if there are things that have negatively impacted you because of this new law, talk about those things, too! This law is almost certainly going to change. We might as well take what advantages we can.

Let’s get to work. If we try, we can protect ourselves and each other.

Love and spoons,

Leah

P.S. If you want a pretty good break down of the logistics of the future of the Affordable Care Act, I suggest this article.

*”Spoonie” is self identifying term used to describe people with chronic illness. Read why here!

Leah is a 26 year old suburb-of-Philly native. She has Ehlers Danlos Syndrome – Hypermobility Type, Gastroparesis, Dysautonomia, a feeding tube, a central line, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of.

The post This is What ObamaCare Has Done For Me, What Has It Done For You? appeared first on Spoon Shares.