Thank you to all of my wonderful #PunkCuts donors!
As promised, here is my video of ridiculousness — me covering Patti Smith’s Dancing Barefoot’ on banjolele while hula hooping. Enjoy.
Thank you to all of my wonderful #PunkCuts donors!
As promised, here is my video of ridiculousness — me covering Patti Smith’s Dancing Barefoot’ on banjolele while hula hooping. Enjoy.
Hi all! I’m doing a special challenge fundraiser for NC’s Orange County Rape Crisis Center. This amazing place does so much year round, both in community education/awareness-raising and support for survivors and friends & family. Their programs got me started on my arts-activism journey. Now I get to give back with my art.
Won’t you please donate and help me reach my goal? I’m a tenth of the way there!
Donate to my fundraiser page no later than August 17th and if I reach my goal of $100, I’ll cover Patti Smith’s ‘Dancing Barefoot’ on banjolele while hula hooping AT THE SAME TIME! This ludicrous video will be shown at the #PunkCuts event in Carrboro on August 17th & also on my YouTube channel for awesome out-of-town donors!
(Also check out my awesome punk cut & dye job!)
Thank you with all my heart to everyone who sent me Amazon.com gift cards and items on my wishlist, to help me cover household expenses and necessities like toilet paper and RV repair parts, things that aren’t covered by my food stamps benefits and continue to be expenses. I still have no income and fight and wait year after year for Social Security Disability Income. I’m waiting on district court proceedings with my disability lawyer, and no idea when I will hear anything.
I moved my domain name kassidephinia.com over to GoDaddy, who are more than happy to set up forwarding to this free WordPress blog, so my URL works again!
Unfortunately as soon as I fix one thing, five more fall apart. I’ve been consumed by trying to learn to repair my laptop, phone, and RV—as well as dealing with hiccups in getting my medication and an issue with my food stamps. With these ongoing costs and in spite of auctioning off everything I can live without, I’m still struggling financially. Amazon.com gift cards in any denomination, or any items on my wishlist, are still enormously helpful and appreciated.
I can’t afford web hosting any longer but my URL is paid up through next year, so I’ve migrated to WordPress.com free hosting.
This means a lot of older posts on this blog that featured embedded videos are broken. Fixing those and trying to make this site more functional cannot be priorities right now. I have a limited amount of time, energy, and resources. I’ve saved a backup of the old site in the unlikely event I’ll ever be able to pay for hosting again. In the meantime this blog and some of my other pages sort of work.
I want to thank from the bottom of my heart all those who gifted me Amazon.com gift cards enabling me to buy necessities like soap and such that aren’t covered by my foodstamps. I also deeply appreciate my friend Amanda’s continued assistance in selling on eBay all the things I can live without. It’s not much but every little bit helps.
Right now with my dire financial situation my priorities are applying for Medicaid and also Supplemental Security Income, which while different from Social Security Disability Income, necessitates some similar processes and doesn’t have a lot of reliable guidance out there for how that will go for me. Many people apply for both at the same time and sometimes SSI can get granted while waiting the interminable process of getting SSDI, which for me has now been four years with no federal district court date in sight. I have a disability lawyer to assist me in the process.
These are not guarantees that I will ever get approved for any of these programs in spite of how severe my disabilities have become, exacerbated by the stress of living homeless and running out of money no matter what I do. I live way out in the country and must have a car to get groceries, treatment through North Carolina’s free mental health care program IPRS, and get medication. That car is far and away my biggest expense: insurance, maintenance, taxes, registration, and gas. The only programs out there to help with transportation are extremely short-term or apply only to those already approved for disability. Most every kind of benefits there are hinge on me being approved for SSDI even though the dire nature of my need for these benefits is because I don’t have that.
There is nothing I can do to speed up the SSDI process. Believe me, I have done a lot of research and asked my lawyer and tried all I can. There are plenty of articles and firsthand accounts of others in my same situation who are going through the same problems. When I run out of money I can’t even file bankruptcy because I have no income nor any guarantee of ever getting any from Social Security.
I’m burned out. It takes more than everything I have just to stay afloat, research options, try things, and sell everything I can. It’s stressful, triggering, heartbreaking, depressing, and the futility exacerbates my conditions. The way this culture, this country, this government, and individuals treat the disabled is passively criminal. No one in a position to do something cares if we die. There’s a lot I can’t do to fight this because I am disabled and my limitations are greater than the abled, something that the abled often find impossible to comprehend when they offer advice based not on my capacities and abilities but on their own.
If you think I’m not fighting as hard as I can, already redlining my capacities to do all I can, you’re sorely mistaken. I don’t need advice. I’m already talking to people who work with the disabled and understand the harsh realities of this situation. I need disability income. Sadly it seems that other than those helpful gift cards there’s nothing anyone else can do.
If there is one basic thing you can do, it’s to refrain from giving advice. Advice puts the burden on me of explaining to you what I know all too well about my reality or else doing more, which as I already stated I can’t. It isn’t that I don’t want to help myself. I am doing that every day.
What I can’t do is deal with people who don’t know what they’re talking about and think that advice rather than offering help is generosity. Unsolicited advice is criticism. I get more than enough of that as it is. It frustrates and irritates me that advice-giving is such a compulsion for many people, particularly those who don’t have any shared reality with me, who have privileges and abilities I don’t. Why are we raised to think advice is just as if not more appropriate ‘support’ than asking what one can do, or actually committing some of those privileges and abilities to doing something about it?
No matter how much I read, write, and talk about this, advice-giving is an unconscious response to others’ trials, especially when the advice-giver has no personal experience or expertise in that area? If I could wish for one superpower, it would be to overwrite that hard-wired instinct to give advice the first time someone in a dire traumatic situation opens up to you.
It’s inflammatory and exhausting to have dealt my whole life with people who don’t know what to say and say it anyway, or ask inappropriately personal questions about the history and background and details of things like my disabilities, how I got here, and my widowhood. These are sensitive, vulnerable topics. If I wanted to tell you the whole story I would. After advice-giving I’d love to shut down the compulsion that drives people to interrogate someone in pain about that pain, asking such personal questions they would never ask a random stranger. That I have shown you my wounds demonstrates vulnerability, it doesn’t invite reflexive curious prodding of the hurt places. I may share some details, it doesn’t mean I will tolerate pressure for more.
Listening is justice. Listening is loving. Asking what you can do to help and then following through is true support. Recognizing the limitations of your experience and knowledge is crucial to being there for someone who is suffering in ways you aren’t.
I’m fortunate and grateful for those in my life who are wired differently, who default to listening, to asking what they can do with a genuine unselfish capacity to follow through, even to action, based on their own capacities to be there.
I wish there was more anyone could do. Going this alone is hard, but not as hard as going through this with people wanting me to educate them or do things I don’t have the abilities to do or that aren’t possible or advisable—or even dangerous.
This is a dangerous time for me and has been for a long time with no end in sight. Every year, every month, sometimes every day I have less to give as I fight harder just to survive.
Maybe what I really wish is that those in a position to make my survival possible could feel exactly what this feels like, hour after hour, year after year, in the face of all this. I’m worn out. I have no more to give than I already am.
From what I’ve heard from others in similar situations, they are equally isolated, unheard, and gunshy of showing their struggles and pain to others for exactly the same reasons. It makes us targets for well-meaning behavior but also for people who feel better or more powerful or valid by attacking those who don’t have the ability or capacity to fight back. We’re out there. Our voices aren’t heard because it’s too dangerous for us and too unpleasant for others. Some of us are dying, not because our conditions are fatal, but because people who can and should do something won’t. We’re faceless and devalued invalids.
Never forget that this could be you. Disability doesn’t discriminate based on age, health, class, gender, race, creed, nationality, willpower, skills, or however many friends we think we have to support us in desperate times. I was told after my husband died that grief rewrites your address book. I think this is true of all hardship. Friendship and support are easy in the good times.
Believe me when I say what I can do varies dramatically day to day due to my symptoms. It has been hard enough for me to come to grips with the limitations my disabilities place on me, and still I drive myself past what I can or should do and I pay the price. It’s hard enough dealing with the implicit shame and sense of personal failure and unworthiness our culture drills into us from day one, that our worth is what money we can earn.
Believe me when I say I am doing the best I can to survive. I want a life worth living, and what I need to make that happen is out of my hands.
If you want to help in more tangible ways, Amazon.com gift cards are still always welcome and enormously appreciated. My needs for things like soap, paper towels, toilet paper, and other personal hygiene items will continue indefinitely even while I still have no benefits available to help me get those vital things of living.
Since I started posting and making videos (which I’m now too symptomatic to do) about struggling with disability and my long fight for Social Security Disability Income (SSDI), one of the most heartbreaking things has been all the responses of people just like me, out there, isolated, alone, suffering, running out of hope. The worst part of it is, as my situation continues to deteriorate year after year through this struggle, I’m so decompensated I can no longer bring myself to respond or even post at all. My symptoms and poverty overwhelm my life to the point where I can barely take care of myself. I no longer feel I have a shared reality with anyone I know, and without that shared reality there can’t be meaningful connection.
This second article details what I’m going through right now. It’s been almost four years since I first applied for disability. I haven’t worked. I have sold my house, furniture, appliances, and almost all my personal possessions of any value I can survive without. Soon this website will go away; it’s up for renewal and I obviously can’t afford it any longer.
It’s terrifying and exhausting to be at the end of my savings, the end of everything of value, and still have no idea when I will get my day in district court or what will come of it. I have the best possible SSDI lawyer for my case—lawyers that work for a portion of the back benefits, so if I don’t get paid he doesn’t—and he tells me we have drawn the best possible judge to hear my case, but there is no way to know when the court date will be set. In the meantime I have to scramble to sell anything that I can of any value in order to pay for my car insurance and upkeep and gas. Because I live seven miles from the nearest grocery store, and much further from where I get mental health treatment and medication, the loss of that car would mean slow excruciating death.
One of the worst parts of this is not being able to talk to anyone I know. We don’t have anything like a shared reality and all too often people are in a hurry to give advice about a situation they don’t live with and know nothing about, which has gone from annoying to infuriating and insulting and frustrating. Over all these years, I haven’t been sitting around doing nothing. I have been working with therapists and social workers and institutions to apply for every conceivable benefit to help me get by. I get food stamps, but don’t qualify for Medicaid, SSI, or housing because the money I have—all that exists for me to live on for the rest of my life—exceeds (but only just!) the limit for cash on hand for those services. By the time I am below that limit and apply again, those applications will also take months or several years, during which time I will definitely run out of money. Meanwhile I’ve been waiting for four miserable years trying to spend as little as possible, doing without things when they break, fearing something really expensively disastrous will happen to wipe me out.
It feels like getting saddled with a heavy rock, and then another, and another, and another, continually for ages. I’m increasingly crushed and breathless under the burden, scrambling to find any kind of way of surviving. Food stamps don’t cover personal hygiene items and the local food bank doesn’t either. I’ve been looking unsuccessfully into other organizations to try to find those things, but even that isn’t going to do much to save me. There are a few places that I’m looking into to apply for gas vouchers. Yet still, it’s car insurance and upkeep, taxes and registration that are the huge expense, and though I’ve done everything I can there, there’s not much that can be done and still keep that car safe and functional.
One thing I hate most about talking about this with other people is their suggestions for jobs. As if I just haven’t thought of the right thing. It’s invalidating to me that I can’t get across that it isn’t that I need a particular special job: I am too disabled to sustain gainful employment. I may from time to time be able to accomplish some things, but that’s hardly the same as doing that consistently 40 hours a week 52 weeks a year. Someone in a wheelchair may me able to get up enough to transfer from the wheelchair to a car or toilet seat with great effort, but that doesn’t mean they’re able to walk everywhere. That’s bullshit.
I’m tired of suggestions of work when the basic problem is that I can’t work and I’m tired of explaining it. If I could work, I would. No one would endure this terrifying, humiliating, drawn-out, draining, psychologically and fiscally bankrupting process of fighting for SSDI for four years if they could work. Even if I succeed in getting these benefits, I will still be living in poverty and have to get subsidized housing and Medicaid—but I will be living.
The real trick is surviving until I get there.
Do you really want to help? I understand that advice-giving usually is triggered by discomfort on the part of the person listening to a predicament, but I can offer much smarter ways to help me.
Thank you for reading. I’ll eventually set up something like a free Blogspot (assuming I’m still alive) if I can muster more words to say in the future. This site will still be here a while and I will retain a backup of it in case there will ever be a better life for me in the future.
I won’t hold my breath.
“Since time immemorial, stories have been used as a way of transmitting cultural values, ethics, and morality. A bitter pill can be swallowed more easily when it is embedded in a sweet matrix. A straight moral preachment might be dismissed, but guidance and direction become acceptable when embedded in a story that is intriguing, amusing, and interestingly told.” —Sidney Rosen, ‘My Voice Will Go With You’
“It’s easier to tell the truth in stories.”
I was a child when I first said this. Every year it has become more true to me, and I have found more sentiments like Sidney Rosen’s in his book about psychologist Milton J. Erickson that validate that sense. Art of all kinds looks to me like a way of inviting or enticing people, and art with a strong message performs the delicate act of coating a bitter pill with Princess Bride-style chocolate to make it taste better. As someone else (that I did not write down) said, it disturbs the comfortable and comforts the disturbed.
This ‘Art & Soul’ series, originally intended to be YouTube videos, was I think a desire in me to search for those things in myself, to dialogue and puzzle through in writing my feelings about art and soul in general but also to specifically answer for myself the most sleep-destroying question of my life: how do I turn all this pain I carry into satisfying art?
Also in many ways: how do I recover my imagination from the endless repetitive loop of trauma and fear?
What I yearn for is a sort of alchemy. Alchemy appeals to me for a lot of fantastic human reasons. As a science it’s total crap, but as a method for exploring one’s inner worlds it’s heartily endorsed by Carl Jung. The dreamlike imagery of his ‘Red Book’ as well as the traditions and myths of alchemy are deeply appealing to me on an art level, but also as ritualistic ways of drawing out what often resists language and logic like narcissists resist realistic self-knowledge. We respond to rituals and patterns, it’s part of the human condition. (See: Matthew Hutson’s book ‘The 7 Laws of Magical Thinking,’ where he even deconstructs his own delineation of 7 laws as a form of possibly flawed thinking.)
The creation of art can be incredibly ritualistic. It can also be incredibly flippant and shallow. I still haven’t read it yet due to a reading list backed up from here to eternity, but I want to talk about ‘The Screwtape Letters’ despite being ill-informed. Recently I watched Stephen Colbert being interviewed by a Catholic priest on YouTube. Colbert spoke of the four forms of humor described in ‘The Screwtape Letters’ and the fourth was the only one the two demon characters discussing humor focused on as a way to influence ‘clients’ (i.e. the human race) to the dark side of the Force. The first was joy, the second play, the third the joke proper, but all these had the potential to invoke closeness and divinity while the fourth was flippancy, and only created barriers between people and atrophied the intellect.
Listening to this I knew finally how I felt about a long stretch of my early teen years where I wrote poetry. I knew I felt nothing and revealed nothing and invited nothing and risked nothing, and here was an excellent framing for what that was and how I sometimes feel when I experience works of others’ art (or especially my own)—there is nothing at the center of the Tootsie Pop. There’s no passion, no drive, no message, the artist acting almost as a random generator regurgitating forms and stories and diagrams and what seems like what would happen if you deconstructed someone else’s art and swapped out pieces with a clinical air to present something as original.
I hate writing that. Because I feel like this is leveled at a lot of burgeoning artists and shuts them down before they build a capacity for public vulnerability and self-knowledge and confidence with their craft to show up and be what they have to say. Hell, in various nicey-knifer ways I’ve had that done to me so relentlessly it shut me down repeatedly for years, and as soon as I’d build back up it would hit me again in that soft fleshy ‘who do you think you are?’ place. What turns me off is when artists never even discuss this—admittedly for valid reasons because artists love passive-aggressively attacking other artists in general. What turns me off is when artists get comfortable faking it, make it, and start to drink their own Kool-Aid and never grow beyond the titillation of form and pretension.
What turns me off, basically, is my own art, when I think about it too much. I recognize I’m faking it and despair and all those nightmare voices play in a loop, reminding me I do not have what it takes. I’m triggered, I’m too fragile for feedback and criticism, and I know this about myself. It’s only in denial of those things I can do anything at all, including go on living. Because without art, my life has no meaning. No soul.
I have a lot to say that is not at all nice. And it’s bound up in trauma and hate and fear and grief and abuse and I long for an artistic and satisfying way to express it, so it’s both not so jarring for me and something I can share with others, without feeling as though I am abusing them with my compulsive desire to connect with others and share the stories of the traumas I have been through. The problem is that art itself is entangled in a web of shame and traumatic experiences of destructive feedback I cannot just scrape off like a healthy well-grounded well-supported or even well-educated person might. My art and my life are compartmentalized so I wouldn’t be vulnerable in an area where everyone is a critic.
Admittedly everyone is a critic regardless of whether it is art or my personal stories of pain I am sharing. It’s a defense mechanism I think destroys human connection, empathy, and a capacity for emotional resilience. Plus the critics are the most voracious, vocal landsharks that ever did walk; they must continually seek out people and things to criticize. I used to be one. I was raised with them. I had them in place of friends because I never learned how to filter them out. Now they are like slivers embedded so deep they will never emerge from my psyche.
I think validation is important because it’s so vital and rare for me. I don’t think it’s appropriate to blindly validate everything because not everything is valid. For instance, with a bully and a target, the bully’s feelings are not as important as the person they have abused. Their choices are not valid and it’s not appropriate to pressure the victim to listen to the bully’s rationalizations, forgive them, or consider them as important as the complaint of a person who has been genuinely harmed by a bully.
I’ve studied why bullies and abusers do what they do, and for most I have encountered and studied, their level of denial is even greater than those of addicts. They do not get interventions because they lash out when people attempt to curb their behaviors and hurt targets they can without repercussions. People who serially hurt other people, whether through narcissism or harassment or child abuse or any other form of cruelty and preying on those weaker, do not respond to a lot of common-sense approaches. Dr. Phil, on an interview on The Late Show With Stephen Colbert, talks about the impossibility of treating narcissists, because they learn the lingo, they learn to game the therapy system to their advantage, and powerfully resist change. Those who learn to turn off empathy are not eager to re-engage it. They are often rewarded far too much for their almost solipsistic selfish behavior.
So validation is not always the right response to everything. That’s all-or-nothing thinking. At the same time, validation is valued far too little, and understood even less. Those who are in the habit of invalidating what they do not like or agree with or ‘get’ are just as defensive and unlikely to change, in my experience, as those who serially bully others. Even though chronic invalidators are usually this way because they were bombarded with invalidation and fear of ‘other.’ When ‘uncomfortable’ equals ‘wrong’ there is a problem. However there is also a problem when people ignore discomfort and just keep enabling bad behavior.
But where is the art in this? Where is the soul? I can talk about what I’ve learned as a result of my experiences, but don’t yet have the capacity to tell the stories of what those experiences were in a way that satisfies me and feels okay to me. It’s too easy to get damaged in this journey. But for me, it’s the only risk worth taking anymore.