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spiritualvirago · 3 years

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How Attractive, Confident, Independent Women Intimidate Men

How attractive, confident, independent women intimidate men? Well, let's ask a man. In indie rapper Immortal Technique's song "You Never Know," he shares the story of an attractive, confident, independent woman who intimidated men (him included). In addition, to writing her a song, the music video shows him as an old man pulling out a love letter from her that he has saved for decades. Certainly, he married this woman, right? No. Was her boyfriend then? No. At least tried to make love to her? Also, no. It's the perfect example of what continues to happen to women just like us year after year. Let's examine a few excerpts from the song:

"She was on her way to becomin' a college graduate/ Wouldn't even stop to talk to the average kid/ The type of Latina I'd sit and contemplate marriage with/ Fuck the horse and carriage shit, her love was never for hire/ Disciplined, intellectual beauty is what I desire/ Flyer than Salma Hayek or Jennifer Lopez/ Everyone told me, kickin' it to her was hopeless." "'I'm not even interested' is what her body language would say/ Everyone around the way gave up tryin' to get in it/ It didn't matter how good your game was, she wasn't with it/ On the block, bitches was jealous but wouldn't admit it." "She spoke intelligently and they bit it, always tryin' to copy/ But when they tried to use her vocab, they sounded sloppy/ She had a style, all her own, respectful and pure/ I was sick in the head for her, and there wasn't a cure." "We talked about power to the people and such/ We spent more time together, but it was never enough/ I never tried to sneak a touch or even cop a feel/ I was too interested in keepin' it real/ Perfectly honest and complete/ She would always call me 'cariño' and never Technique/ Bought me a new book to read every two or three weeks." "Ended up locked up like an animal for a year Where the C.O.'s talk to you like they were the overseer Then I got sent to the hole when my exit was near At night in my cell, I'd close my eyes and I'd see her Hold her close in my dreams, but when I woke she disappeared." "Fuckin' lots of different women, but I still felt alone/ Relatively well-known around the New York underground/ But I kept thinkin' of her and how we used to be down/ The sound of her voice, and the beautiful smell of her hair." "Technique don't fuckin' fall in love with people/ Hold the person that you love closely if they're next to you/ The one you love, not the person that'll simply have sex with you/ Appreciate them to the fullest extent and then beyond/ ‘Cause you never really know what you got until it's gone." https://genius.com/Immortal-technique-you-never-know-lyrics A MAN'S SOCIAL PROGRAMMING "Get comfortable with being alone. It will empower you." -Jonathan Tropper In an article entitled "Most Men Are Cowards, But Too Cowardly to Admit It," author Paul Hudson writes: "Men set ridiculous and stupid expectations for themselves and then do all they can to hide their inability to live up to them. Men aren’t evil bastards; they’re stupid bastards who are too cowardly to admit how cowardly they really are. When did fear become a bad thing? When was it that we decided that the most basic of evolutionary traits was something that was to be overcome and avoided? Instead of being seen as advantageous, fear in man is believed to be a weakness. This backwards way of thinking is the reason why the world is constantly in a state of war." https://www.elitedaily.com/life/culture/men-cowards-cowardly-admit/643275 In the song, what is Immortal Technique's reason for never even attempting to touch this woman he's desperately in love with (just talking)? He claims he wanted to "keep it real." It is completely normal and natural for a man who is in love with a woman to pursue her. Nobody thinks sharing the physical expression of their mutual love for one another is a cop-out. It's one of the greatest joys and blessings in life, in fact. Saying that he is "keeping it real" is one of the typical tried-and-true justifications men give for not pursuing women who scare them (coupled with intense feelings for these women that also scare them). Dating coach veteran Katja Rembrandt validates that it is harder for successful women to find a partner due to this social construct of modern masculinity. “It is tougher because it takes a very confident man who probably isn't on the same rung of the corporate ladder, not to be intimidated. Very ambitious and very capable women are still very scary for the majority of men.” https://www.smh.com.au/lifestyle/life-and-relationships/dating-expert-explains-why-it-s-harder-for-successful-women-to-find-love-20180805-p4zvo6.html

In the book The Love Gap, Jenna Birch explains, "Until men can provide for a family...they don’t feel comfortable dating seriously or making a lifelong commitment. And no matter how much men say they want an equal partner (a woman who’s smart and independent), studies find that such women often make men feel emasculated or inferior." Birch told the Washington Post that, "There’s a lot of survey data that said men were really into these smart career women. But I looked around at who was struggling with dating, and they tended to be that type. If this type of woman is the dream girl, then why are they having so many problems?" https://www.washingtonpost.com/news/soloish/wp/2018/02/02/men-say-they-want-smart-successful-women-so-why-do-these-women-have-trouble-dating/ Well, Birch discovered in writing her book that something known as "psychological distance" may come into play. Essentially, psychological distance is when an idea feels good in the abstract, but when one encounters it in the flesh and blood, it loses its appeal. Her research revealed that men liked the concept of dating what Immortal Technique called a "disciplined, intellectual beauty" from a distance, but, in reality, it was not appealing to them. "A LADY IN THE STREET BUT A FREAK IN THE BED..." "In solitude, the mind gains strength and learns to lean upon itself." -Laurence Sterne The Madonna/Whore Complex (or it is sometimes called "Madonna/Whore Dichotomy") is when men believe that a woman can be either good (nurturing mother, helpful nurse, kind school teacher) or bad (someone who enjoys sex, wears sexy clothing, has a high number of sex partners) but not both. This concept, in a nutshell, says that men find it difficult to see a woman as both "motherly" and "sexy" at the same time. Rapper Usher famously sang in his song "Yeah" that he wants "a lady in the street but a freak in the bed" https://www.youtube.com/watch?v=GxBSyx85Kp8--this is the Madonna/Whore Complex. Let me explain it another way: some women are fuckable--freaks (women in sexy clothes with a high number of sex partners); some women are lovable--ladies (educated, classy, smart, conservatively dressed). Immortal Technique spends the entire first verse telling us how the woman in his song is clearly a "lovable lady." Any surprise that he brags about "fucking a lot of different women" but never had sex with the one that mattered? Any surprise that, in the last verse, he distinguishes between "the one you love, not the person that'll simply have sex with you"? Of course not. WHERE DOES "MARRYING UP" LEAVE TOP WOMEN? "If you want to be strong, learn to enjoy being alone." -Buddhist saying

So let's talk about the pink elephant in the living room here...why is the heroine in Immortal Technique's song turning her nose up at all the guys coming on to her but she develops a friendship and ultimately falls in love with one who ends up getting arrested and going to jail? Why is she buying him books or borrowing on his behalf from the library? He made it pretty clear to us that this young lady could have whoever she wanted, right? Well, it actually makes perfect sense. I remember learning about something called "marrying up" in one of my Sociology classes. Historically, men tend to marry women with less social status than them, such as less-educated, younger women with less money and less impressive careers (or no careers). Likewise, women prefer "marrying up" (men with more education, more money, better jobs, and older than them). This has been the system since the dawn of time. Unfortunately, it leaves women of the highest social status and men of the lowest social status chronically single. Ladies, we have all dated men from this category at one point or another. We tend to beat ourselves up about it, but, in reality, there are very good reasons why the most amazing women are often involved with the least amazing men--beyond just their on-going availability (see the chart to the left). First of all, bottom men have absolutely nothing to lose by approaching top women. They are expecting to be shot down. Psychologist and coach Perpetua Neo told Business Insider that successful women are willing to put in hard work and effort--when it comes to making partner at the firm or dating a "fixer-upper" guy. While a pink collar woman might think, "He's not working? I need a guy who can help me. No way," a white collar woman might think, "He's not working? It's so hard to find a job after graduation. I can ride it out until he gets hired on somewhere." https://www.businessinsider.com/why-intelligent-and-high-performing-women-fall-for-toxic-partners-2019-7?r=MX&IR=T#1-high-performance-women-are-willing-to-put-in-the-work-1 What some think of as this woman "giving too much," the top woman probably thinks of as "trying hard," something for which she is typically praised. Now let's take into consideration the "masculine social programming" experienced by bottom men. Unfortunately, the pressures of masculine performance are eating at these guys the most, which turns a lot of them into narcissists. Bobbi Palmer of Date Like a Grownup told the Huff Post, "These pathologically self-centered guys want a strong woman who has a lot to give...these types of men look for women who can constantly stroke their 'surprisingly fragile' egos. They also want someone 'steady and strong' they can count on to take care of them--particularly someone empathetic to attend to their 'child-like needs' and someone smart who they can prove they're even smarter. They also tend to want self-sufficient women so they don't actually have to take care of the woman's needs..." https://www.businessinsider.com/why-intelligent-and-high-performing-women-fall-for-toxic-partners-2019-7?r=MX&IR=T#1-high-performance-women-are-willing-to-put-in-the-work-1 Furthermore, bottom men are often alpha males--just because they don't have pensions, college degrees, or stand 6'0" tall, doesn't mean they don't have commanding presences. Plus, sex with them is a big no-no, and taboo is a huge turn-on. LESSONS FROM "SEX & THE CITY" "I want to enjoy my success, not apologize for it." -Miranda, Sex & the City Dating coach Katja Rembrandt says, “Women are groomed to think that the man should have an even better job than them, so he can be the provider, even when she's perfectly capable of being the provider herself. These men are not usually looking for a very ambitious, hardworking, probably overworked wife...99% of the men you want to meet don't want to meet you. They might want to meet you for business contracts, but not as a future partner.” https://www.smh.com.au/lifestyle/life-and-relationships/dating-expert-explains-why-it-s-harder-for-successful-women-to-find-love-20180805-p4zvo6.html Ouch! Let's look at the most famous "top women" we all know and love...who did the characters from Sex & the City end up with? Charlotte traded the man in her "box of dreams" (JFK Jr.) for someone still super successful, just not famous or GQ-esque, Harry. By focusing on his qualities (loving, caring, supportive) instead of his credentials (bald, short, not a celebrity), she found someone she truly loved. Miranda traded her dream man (Jon Stewart from the "Daily Show") for a patient, caring bartender who first broke up with her because he was intimidated by her money. It took Steve about 2 years to move past that, but he got there (opening his own bar helped). Despite all of Samantha's efforts to not let her on-going boy toy Smith hold her hand in public or call her his girlfriend, in the end, his unfaltering love, support, and care turned the tide. He was working several part-time waiter and caterer jobs when they met and was two decades younger.

Some say that couples must choose between "being right or being in love," but for modern bad ass single women the choice looks more like, "Do you want to be coupled up or do you want to wait for Mr Big"? Carrie and Mr. Big dated on and off for ten years before they unceremoniously agreed to marry for asset protection purposes. In John Gray's Mars & Venus on a Date, he lays out some great advice for women on Carrie's path: - understand that it is natural for all men to pull away periodically--it's not about you - uncertainty is a normal, natural phase during the dating process--and some men dwell in uncertainty for years (or, as Miranda would say, they are like taxis driving around with their lights on that never pick up any passengers) - a woman must resist the tremendous urge to start pursuing the man when he stops pursuing her (let him experience the uncertainty), which leads me to the final bulletpoint... - while uncertain men should just focus on one woman at a time to see if he is interested in getting further involved, women in uncertainty should date around and fill up their time with a variety of different guys to see who is most fulfilling and keep expectations low at this point If you want to wait for Mr. Big, you need to understand the above 4 concepts. If waiting is not your bag, the Sydney Morning Herald reports, "Rembrandt encourages women to look for, and appreciate, the value of partners who are willing to support their success rather than compete with it. These men may have lower incomes and lower status. And, no, this isn’t the age-old advice to 'settle.' Settling is when you lower your standards and effectively put your needs second. Finding a man who’s going to support your success is about putting your needs first." https://www.smh.com.au/lifestyle/life-and-relationships/dating-expert-explains-why-it-s-harder-for-successful-women-to-find-love-20180805-p4zvo6.html Birch, author of The Love Gap, echoes this sentiment as well, saying, "There were a lot of women in my book who ended up dating men who all their friends and family said: 'Don’t do it. He’s not going to put a label on it. He’s taking forever. He’s so skittish.' But a lot of the women learned that they had to be patient and work through it on an individual level with these guys who were putting so much pressure on themselves to provide, which I thought was really great." https://www.washingtonpost.com/news/soloish/wp/2018/02/02/men-say-they-want-smart-successful-women-so-why-do-these-women-have-trouble-dating/ HOW TO DEAL WITH BEING AN "INTIMIDATING SINGLE WOMAN" "Being alone has a power that very few people can handle." -Steven Aitchison First of all, let's acknowledge that a really big percentage of the world is completely controlled by their inability to be alone. They are chasing after abusive basement-dwellers, visiting their X's in jail, accepting booty calls from guys who don't give them orgasms back, and so on...all because they can't do what we do. Standing alone takes courage. It is an act of bravery. Remind yourself of this frequently. Also, remember to make gratitude a daily habit. We never have to deal with his snoring, don't have to share the remote, never have embarrassing arguments in public, and never have to cry ourselves to sleep because of some off-hand comment a man made. One of my personal favorite things about being single is that my vibrator has never asked me for a blow job 3 seconds after I come.

I was once involved with a guy 20 years younger than me (one of the perks of being a single M.I.L.F.). We had agreed to have casual sex. There we were sitting in my kitchen, no-strings agreement reached, and nothing happening. He told me he was still too nervous to kiss me and get the ball rollin.' For fuck's sake! I felt like Mrs. Robinson in the phone booth telling Benjamin to give me our hotel room number. The next day we went out with a group of friends, and I saw my "Benjamin" walk right up to some random young lady in the crowd, start dancing with her, and by the 2nd or 3rd song, grab her and kiss her like nothing. Clearly, he had labeled her a non-intimdating "fucakable" woman, and I realized he had a serious crush on me! It used to be, "He's just not that into you." But, for powerful women like us, when a man stalls, postpones a date, or disappears for two weeks, I read that the opposite way--it's just a historical fact. If he's "just not that into me," he'll drop some hints (or just directly ask) for casual sex before disappearing. If he is that into me, he won't. Most "dating rules" were not written for women like us. A/B split test your own rules since the conventional ones most likely don't apply. Like starting out with casual sex and then seeing what develops...this has always been discouraged by dating gurus. In my experience, casual sex can keep him coming back long enough to realize you aren't going to bite his head off like a praying mantis. Just be careful to be honest with yourself about what's happening because he can turn into a deer in headlights at any moment during this phase. Again, John Gray writes in Mars & Venus on a Date: "These women (who remain single) mistakenly approach their relationships with men the way they want men to approach them. They are repelled by the thought of a needy man, so they are very careful not to need a man...They are surprised that their self-reliant attitude does not make them attractive...A woman needs to understand within herself why she may need a man and then learn how to express this vulnerability in a healthy way...The more self-sufficient a woman becomes, the more she hungers for the nurturing support of a man's romantic affections, friendship, and companionship. Women today experience a deep longing to feel the intimate passion that only good communication and romance can provide." (p. Read the full article

#SingleSpiritualWarriors #SpiritualWarriorFeminism

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connectingals · 4 years

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Welcome to Connecting ALS, your weekly podcast from The ALS Association. This episode shines a spotlight on the public policy priorities during the COVID-19 pandemic, and how our ALS community is advocating amid extreme social distancing.

In this episode, Mike and Jeremy are joined by Kathleen Sheehan, vice president of public policy at The ALS Association, and Ashley Smith, associate director of grassroots advocacy at the Association. Kathleen and Ashley take us through digital advocacy efforts and the key public policy priorities being pursued as part of COVID-19 response legislation. To learn about The ALS Association’s public policy priorities, visit http://www.alsa.org/advocacy/Public-Policy-Priorities.html. To become an advocate, visit https://alsa.quorum.us/register/ To read up on the changes to telehealth access discussed in this episode, visit https://alsa.quorum.us/register/ This episode was produced by Garrett Tiedemann and is brought to you by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter.

Transcript:

Jeremy Holden: A quick note before we get started. This interview was recorded on Tuesday, noon Eastern time. A lot has changed since then. Just as we wrapped up this episode, the Senate voted unanimously to pass the economic stimulus package that Kathleen and Ashley will talk about throughout this interview. In this fast changing environment, we expect this to happen. We just want to make sure that you're aware as you listen. All right, on with the show.

Kathleen Sheehan: I want you to feel empowered to take action. Congress is there. They have a lot of priorities that they're considering, and we want to be sure that people living with ALS who already have very challenging lives, get what they need. So please become an advocate if you're not already an advocate and ask your friends and neighbors to do so as well.

Mike Stephenson (in-studio): Hi and welcome to Connecting ALS. I'm one of your hosts, Mike Stephenson coming to you from Saint Paul, Minnesota, and I'm joined as usual by my colleague in North Carolina,Jeremy Holden. Hello sir. How are you doing today?

Jeremy Holden (in-studio): Doing. Okay, Mike. You know, I'm struck by something that Dr. Lou Libby said, last week on on the show -- and he participated in a Facebook Q&A recently and we can, we can share a link to that in the show notes, but his preference for physical distancing rather than social distancing, and I am seeing people trying to do a little bit more socializing but through technology and through those kinds of six foot parameters. And so, um, I'm trying to incorporate Dr. Libby's guidance to use physical distancing rather than social distancing because it allows us to still get some of that social interaction like we're getting right now.

Mike Stephenson: Yeah, that's great. That's great.

We're recording this in two different States obviously and I've seen a lot of virtual happy hours and virtual Hangouts happening amongst friends and colleagues and it's, it's the smart thing to do with the safe thing to do for everyone right now. So it is, it's encouraging to see that happening. And you mentioned that panel that we put together last week to discuss all things COVID-19. I hope our listeners did have a chance to give that a listen. If not, you should go back and check it out now. There was some really great content in there. This week we are going to hear from two policy experts in Kathleen Sheehan and Ashley Smith of The ALS Association and considering that we're still in the midst of the pandemic, we covered how that is impacting ALS legislation specifically as well as how things like virtual advocacy are going to be playing a bigger role. And Jeremy, I thought it was a pretty well rounded discussion.

Jeremy Holden: Yeah, I completely agree. And that virtual advocacy components is something that I found fascinating. You know this coming at a time when the Association was bringing some of its, what Ashley tells me are the grass tops advocates to Washington DC for those face to face meetings and you know, I know historically we think of those face to face meetings with members of Congress as so important for pushing forward public policy priorities, and that's just not possible right now in these times of social distancing. So learn from Ashley and from Kathleen ways that they are innovating. And making sure that the conversations can still happen, but in a socially responsible way.

Mike Stephenson: Definitely. Interesting times and fascinating to see how it's impacting advocacy. Let's take a listen to how that conversation unfolded. Now

Mike Stephenson: We are joined on the phone today by Kathleen Sheehan, vice president of public policy at The ALS Association and Ashley Smith, associate director of grassroots advocacy. Thanks to you both for taking the time out of what I'm sure is a very busy week for you to be joining us on Connecting ALS.

Kathleen Sheehan: Thanks. We're delighted to be here.

Jeremy Holden: Kathleen, I'll start with you. Tell us a little bit about your role with The ALS Association.

Kathleen Sheehan: I'm the vice president of public policy and my job is to reach out to everyone in the field who's interested in ALS and to engage them in the work that we do. We monitor everything that Congress does that's of importance to people living with ALS. We also work to monitor the things that the administration may do and and as we monitor, we analyze what individual pieces of legislation will mean. What is the best opportunity for us to fight for people living with ALS? And we argue for things that are very important, whether it's increasing funding for ALS research or whether it's making the lives of people living with ALS easier by ensuring that they have access to what they need and have the appropriate financial support from social security disability. That's it in a nutshell.

Jeremy Holden: That's great. Thank you for that Kathleen. And we'll be unpacking some of that a little bit more in a moment here. Ashley, I want to bring you in. Can you, uh, tell our listeners a little bit about your role with the Association?

Ashley Smith: Great. Absolutely. So my title has grass roots advocacy in it. And doing that I design and direct our grassroots and grass tops activities to advance The ALS Association's policy priorities and mission. So I work closely with Kathleen and our colleagues on our public policy team and our mission strategy team in general to engage our constituents and people living with ALS across the country in our lobbying activities and our activities on Capitol Hill. So I write a lot of emails to our activists. I engage them in letter writing and create toolkits to empower them to advocate on their own behalf.

Mike Stephenson: Thanks for that. Thanks again to both of you for being here to talk about policy and legislation and how the current times are really impacting your work and the ALS community and as we continue to sort through the realities brought on by the COVID-19 pandemic, one of the difficulties is keeping up to the minute with news on a state and federal level That seems to be changing so rapidly. keep in mind that we are recording this at noon on Tuesday, March 24th. Kathleen, let me ask you, what is the latest that you're hearing about pandemic related legislation that potentially could have an impact on the ALS community?

Kathleen Sheehan: There's a lot going on, so I'm going to keep it simple. On March 6th Congress passed a piece of legislation that was a coronavirus preparedness and response supplemental appropriations bill. That basically means Congress was providing more money. They actually provided $7.76 billion to federal, state, and local agencies to combat the virus. What's most important in this piece of legislation for all of us and for people living with ALS is that the legislation included waivers for Medicare telehealth. Previously, before this legislation was passed, you could only receive telehealth if you're a Medicare beneficiary, if you went to a specific location. And Congress very quickly realized that was not a good idea during the crisis and so they lifted many of those restrictions. So if you're not already aware of this, you can contact your physician and say to them, I would like to talk with you on telehealth. Their offices should help you to figure out how to make that happen and you should be able to get care from a physician through telehealth if you're a Medicare beneficiary.

Kathleen Sheehan: Let me say that oftentimes a Medicaid program and private insurance mimic what Medicare has done. So regardless of what insurance you have, you should be touching base with your physicians if you haven't already heard from them and asking them about telehealth. The lifting of these restrictions actually applies to a wide range of health care professionals. So I've used the word physician. It also applies to nurse practitioners and a whole bunch of other people that you're probably have a health care relationship with. So that was a really exciting piece of legislation.

Jeremy Holden: Thanks for that Kathleen. What else is Congress doing in response to COVID-19 pandemic and particularly as it relates to people living with ALS,

Kathleen Sheehan: The second piece of legislation that was passed, it's called access to testing and a relief for individuals and employers, and it largely said there should be no cost for coronavirus testing for all patients regardless of their insurance type or status. And so there was $1 billion included for the testing of uninsured patients. There was also some additional funding provided through Medicaid for state budgets. And then there was some changes that were made on the family and medical leave act that would a difference in terms of helping employers and employees to have some time off that they may need during this crisis. Another important provision of that was to provide additional support to states to support unemployment benefits. So that was a second piece of legislation. So the first one was support to the states and local governments and included telehealth. The second one addressed testing and basically said everyone should be able to get free testing. It did something to help out families with family and medical leave and then it also provided some additional support for unemployment.

Kathleen Sheehan: The third piece of legislation is a broad economic stabilization piece of legislation and that piece of legislation is still in process. The ALS Association has joined with a range of other patient organizations to advocate for relief in this piece. And the relief that we're asking for would be additional monies that would go directly to individuals who have been impacted. So in theory it would be a check that would go to people who qualify to help those who are struggling during this crisis. But it would also include some support for nonprofit organizations in terms of helping them to remain stable. So as you may know, Congress is looking at how do they help businesses and that would be through loans and loan forgiveness and a couple of different ways that might be accomplished that we said, well, whatever you do for small businesses, we want you to do for nonprofits. Our goal is to be sure that our local chapters are there and available to help you. They are 100% committed to doing that and will remain strong throughout this crisis to be of help and support to those that they are assisting.

Mike Stephenson: Thank you Kathleen. That was great. Just giving us the full picture of of kind of what's happening and I know every day it seems there's something changing on that front and I appreciate you keeping your ear to the situation so that we can all stay up to date. I want to shift to Ashley for a moment to Ashley. A number of states have moved to or are considering shelter in place orders for the pandemic and most of us are doing everything we can to stay at home as much as possible. In terms of advocacy that means that of course we're not going to be meeting with our legislators or their staffs in their offices on the Hill, and because I know it's something you're passionate about, Ashley, what can you tell us about virtual advocacy and the role that's going to play?

Ashley Smith: Yeah, absolutely. So our advocacy efforts at The ALS Association have always been virtual. The great thing is that we have our advocacy options center online that any person living with ALS or any advocate who is interested in advocating on behalf of the ALS community can sign up and become a virtual advocate. So in this new world that we're living in with sheltering in place, the tools that we were already using are going to become even more important as we are less able to meet in person and both in DC and back home in-district. So it's really easy for folks to become an advocate. You can simply go onto The ALS Association's website, alsa.org, Click advocate, and then click sign up and it'll take you to our advocacy action center where you can take any action. We launched an action alert yesterday in support of a couple of asks that we have with Congress as they move pandemic legislation. So that's an easy action for anyone to take right now from home and write a letter to their member of Congress. So we're continuing to encourage our advocates to write letters to Congress, to tweet at their members of Congress, and to really show the power of our ALS community in this time of crisis.

Jeremy Holden: I have a silly question, but I'm not afraid to ask those. You mentioned at the outset that you engage in in grassroots and grass tops advocacy. Talk to our listeners a little bit about what those terms mean. What's the difference between the two?

Ashley Smith: Sure. That's not a silly question at all. So for grassroots, that is our entire ALS community. So every advocate who has signed up to come and advocate in our advocacy action center or any advocate that has a participated in a walk with our local chapters, they are a part of our grassroots community. So our larger community of advocates. For grass tops, that tends to be folks that have direct connections with members of Congress. So if you have ever met with your member of Congress then and created that relationship with them that has been ongoing, you would be considered a grass tops advocate. For The ALS Association that means our executive leadership, our board of trustees and board of representatives, and our chapter executives. So our grass tops advocates this week will be making calls to Congress as a part of our virtual advocacy efforts and engaging them in our advocacy asks around the SMART act for our noninvasive ventilators asks for the ALS disability insurance access act for our SSDI waving period and then our appropriations ask for fiscal year 21

Jeremy Holden: Thank you for that. And you know what? It strikes me, this is all happening - the sheltering in place, the extreme social distancing -- is all happening at a time when we had some of those advocates scheduled for in person meetings. Talk to us a little bit about what's going on this week with ALS Association advocates.

Ashley Smith: We have our grass tops audience who we had planned to have an in-person fly in. And so we scheduled fly-ins during the early part of the year for our grass tops audience and advocates. They were supposed to be in Washington D.C. starting today, and they were planning, we were planning to have Hill meetings tomorrow all day. And when Congress closed their doors to public meetings, we quickly transitioned over into a virtual advocacy event. And thankfully our advocates, our chapter executives and our volunteers have been really flexible in doing that change for us. So we've armed them with call scripts and talking points and social media posts to make sure that we can continue to make this advocacy action easy for them. But they are chapter executives from across the country and a couple of volunteers will be making calls to all of their members of Congress tomorrow. We're going to be reaching just over 200 offices tomorrow through those calls. So we had originally planned in-person meetings and over the last week and a half we've shifted those to phone calls. So The ALS Association, like many associations across the country are shifting into this more virtual space and thankfully phone calls and letters and emails are still doing the job while we can't do those in person meetings.

Mike Stephenson: That's so great that you were able to adjust on the fly like that and then transition to a more virtual platform and that that is working. It really, really impressive that that you were able to do that so quickly. Kathleen, let me ask you, in terms of communication with the congressional offices themselves, what are you hearing from those offices and their aides and saying, here's what we expect and how we plan to communicate with you going forward. I know everyone's trying to innovate and come up with different virtual ways so that we can stay connected, but are they providing any information or giving you ideas about how best to reach them?

Kathleen Sheehan: Absolutely. Congress is in business, and they will remain in business and actually I just got some exciting information to update what Ashley just reported. We have 254 appointments that are set for tomorrow and our chapter executives who are very well informed on the issues will be making those direct phone calls to the key congressional staffers to have our priorities to be included in this last bill that I was describing to you, the stimulus bill. Many people living with ALS suffer from respiratory distress. They need a noninvasive ventilator at home so that they continue to have a high quality of living with their families and be able to appreciate the life that they have. We don't want them to have to go into institutions, particularly during this horrible time. We don't want them to have to go to the hospital because they're having problems breathing, so it's critically important that they have that access.

Kathleen Sheehan: The Medicare program prior to all of this had said, we're going to put this program into something called competitive bidding. We rallied together with the respiratory physicians, the respiratory therapist, and we said, no, you cannot do that. You cannot put these noninvasive ventilators into a program that is going to restrict access. So we have been fighting them tooth and nail. We went to the Medicare program and talked to them directly. They didn't listen. So now we've gone to Congress and we have a piece of legislation. Then it's going to be that has been introduced and that we're seeking to get into the bill. It's called the SMART bill.

Kathleen Sheehan: The other top priority for us in terms of getting it into this third bill that Congress is currently considering relates to social security disability. People who are living with ALS are entitled to receive social security disability and that gives them access to Medicare, which is critically important, but because of an arbitrary rule, they're required to wait five months for their social security disability check. Now, anyone who's been involved in Medicare or any health insurance knows there's copays or deductibles, there's premiums. We said absolutely not. Anyone who is living with ALS should be getting their social security disability check right away. We've been fighting very hard for that and we're going to continue. So those are the two key pieces that we want to get into the third bill.

Kathleen Sheehan: The one other thing I want to mention that I didn't mention a little bit earlier when we were talking about the bill that's currently being considered by Congress is that it would also provide for a charitable deduction of $300 for everybody. You may remember that some of the changes that Congress made on the tax bill kind of limited your deductions on what you could do with charitable donations. And this bill, and I think this, this provision will definitely be in, it would allow people to make continue making those charitable deductions up to $300 and those deductions of course are really key to our chapters in terms of them being able to continue providing services to people living with ALS, wheelchairs and support on how to access their insurance. It's incredibly important to our research efforts. So I'm going to stop there and let Ashley tell you how everybody who's listening to this podcast can help to be sure that these things are included in the bill that Congress is currently considering.

Ashley Smith: Yeah, absolutely. So we launched an action yesterday urging Congress to support people living with ALS in any emerging legislation in the COVID-19 response bill that they are working on that Kathleen mentioned, or any emerging legislation in the future for any health care packages. So any advocate can go to our advocacy action center and click on "write" for our top action online and send a letter to their members of Congress and their senators today. If any of our listeners are already an ALS advocate, they received an email from us yesterday about that ask, so encouraging folks to to sign up to become an so that they can take action in support of people living with ALS for the pandemic and beyond, but also so you can receive action alerts in the future so that we can continue to engage our advocates throughout the year as we continue to do this great work and support of our ALS community.

Jeremy Holden: So important that we continue our advocacy efforts. I know there's a lot going on right now and then everyone is facing additional challenges and those living with ALS have a lot on their minds, I'm sure and so much anxiety, but it is key that we continue to advocate and we push for these issues to ensure that legislation that's going to impact the ALS community keeps moving forward. Kathleen and Ashley, thank you so much for your time again. I can't imagine how busy the two of you are, so to give us your expertise and some up to the minute information on this call was great. Thank you for being here.

Kathleen Sheehan: Thank you and thank you to all your listeners.

Ashley Smith: Yes, thank you.

Jeremy Holden: Thank you again to Kathleen Sheehan, vice president of public policy at The ALS Association and Ashley Smith, the associate director of grassroots advocacy for the Association. A really fascinating look into the public policy priorities of the Association amidst the COVID-19 pandemic. Talked a bit about changes in access to telehealth, particularly for folks on Medicare. We can share some information on that in the show notes and you know, interestingly enough, Mike, we'll be hearing a little bit more about telehealth these days next week in our interview with Lauren Tabor Gray.

Mike Stephenson: Yeah, that's a nice segue into that conversation about how technology and telehealth are going to play a much larger role in the ALS clinical setting, obviously for the duration of the pandemic, but probably moving forward as well as that technology evolves and becomes more available to folks.

Mike Stephenson: That'll wrap another episode of Connecting ALS. You can find us at connectingals.org or wherever you get your podcasts. We would love it if you would subscribe there to get all of the latest content and if you have feedback or questions for the show, you can hit us up via Facebook and Twitter. This episode of Cnnecting ALS was produced by Garrett Tiedemann of the ALS Asociation's, Minnesota, North Dakota, South Dakota chapter. Thank you all for listening to the show. We look forward to connecting with you next time.

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