A Veiled Attack on The Disabled

A Veiled Attack on The Disabled

My first job was working the front desk at a gym for minimum wage. I had to scan member ID cards, re-rack weights, and clean the entire gym — wiping up people’s saliva from the sinks and their sweat off the treadmills, sanitizing the toilets and showers, and picking up the garbage they left behind. It was a thankless job that I did for less than eight dollars an hour. As hard as it was, the job was still easier than the work the Trump administration now wants me to do.

I’ve been disabled and unable to work for more than five years, but now the president is taking steps to send disabled people like me, who are physically impaired, back to work. President Trump’s $4.8 trillion budget proposal for the 2021 fiscal year aims at “getting individuals with disabilities back into the labor force” through a slew of vague policies and inadequate programs that will do more harm than good. 

As a disabled person who can’t walk and is confined to a bed or wheelchair around the clock, it would be physically impossible for me to do the work I used to, or for that matter, any work other than writing an occasional freelance article. I can’t clean toilets or wash sinks; I can’t wipe people’s sweat off workout equipment. I can’t even wipe my own sweat off workout equipment because I can’t work out.

In 2011, I was diagnosed with myalgic encephalomyelitis, which, if you read this blog, then you know is a devastating multi-system disease. I tried to maintain my work schedule, but the disease left me bedridden for nearly two years. I was too weak to take care of myself, cleaning up after someone else at a gym would have been impossible.

I spent years trying to get disability benefits through Social Security Disability Insurance (SSDI), but because I hadn’t contributed to the workforce long enough, I had to settle for Supplemental Security Income (SSI), which, in many cases, offers benefits that pale when compared to SSDI. 

Currently, I receive around $930 a month in the form of a cash disbursement from SSI. It’s barely enough to pay my rent, and not nearly enough to cover the thousands of dollars a month I incur in medical bills. Because my bills vastly outnumber the SSI disbursement, I often find myself needing more income. But there’s no way I could work a conventional job, even a part time work schedule would be unrealistic for me. 

Regardless, based on Trump’s latest budget proposal, he wants to send me back to work. It’s not enough that I can barely get by on my paltry SSI disbursements, now the Trump administration wants me to work when I can’t even walk. 

The administration also wants to make it harder to qualify for disability benefits by limiting a person’s reasons that they can’t work, including not being able to speak English.

The president’s plan, as reported by CNN, says that disabled Americans participate in the workforce at a rate less than half of that of our able-bodied peers. But that’s because many, if not most, of us can’t work. And it’s not because we don’t want to work or don’t need to work, the administration doesn’t realize that the reason disabled Americans participate in the workforce at such lower rates is because our disabilities prevent us from working. It’s not because we‘re unmotivated and need some sort of half-hearted government incentive or can’t find work on our own. 

Even so, Trump’s budget claims that the unemployment rate among Americans with disabilities is the lowest on record, which makes the president’s push to increase the participation rate of working age disabled individuals even more dubious. 

But the administration is also going after disabled people who can work. The proposed budget introduces substantial changes to Ticket to Work, a social security program that gives disabled people the option to work while keeping their Medicare or Medicaid benefits. Under the proposal, the program would be transferred to the Department of Labor, all but guaranteeing that it would change drastically. It’s not difficult to imagine disabled people who use Ticket to Work being stripped of their social security benefits when the program is moved out of the jurisdiction of the Social Security Administration. The president wants to make the program “simplified, streamlined, and improved,” terms that disabled people like me have come to know as code for diminishing or taking away our benefits. 

We aren’t the only ones impacted by such language. The president’s budget proposal is littered with other euphemisms used to indicate drastic cuts and changes. As Michael Hiltzik recently wrote for the Los Angeles Times, “Cuts in welfare, student loan forgiveness and disability benefits are described as ‘reforms,’ as is a cut in postal service support. ‘Modify’ is the word for cuts in federal employee retirement and health benefits.”

The proposal also eyes cuts in housing, education, and food stamps, all of which impact people with disabilities. According to The New York Times, the proposal includes a policy on establishing a panel of experts to create new programs that would increase the participation of disabled Americans in the workforce, the goal of which is to save some $47 billion over the next decade. The president also wants to save $10 billion by limiting retroactive disability payments when a person becomes eligible for the program. In total, the president would like to save $75 billion on changes to disability programs by 2030. 

While such efforts to reduce disability benefits and get disabled Americans back to work may seem savvy to some people, in truth, Trump’s budget does not have disabled people’s best interest in mind. Instead, he wants to reduce social security spending, despite his own public statements to the contrary. By all indications, his actions are a thinly veiled attack on Americans with disabilities and an aggressive strategy to get us to do jobs we can’t.

BEFORE YOU GO…

1. Thanks for reading!

2. If you would like to donate to support this blog I would be so grateful.

3. I am fundraising to pay my medical bills and if you’d like to help out by buying a shirt or hoodie I’d be equally grateful.

Talking Without Speaking

Talking Without Speaking

If you follow my blog, then you probably know that I’m in the process of publishing a memoir about my battle with chronic illness. Last week I turned the manuscript over to the publisher and they said that they should have an editorial letter for me in a month or so.

I’m hoping the book gets a release date for sometime later this year. Before it does, however, I’ll be making some big announcements, including who will be writing the foreword. I’m also going to be sharing some “outtakes” from the book–stories and anecdotes that I had to cut from the manuscript.

The first story is, like much of the book, written in present tenses. I chose to write this way for a few reasons. Mainly because, for the majority of the book, with the exception of times when I was too sick, I wrote a draft of the events shortly after they happened. In some cases, it was mere minutes afterward. Writing in this form was very much a practice in contemporaneous note taking. While I did at times use past and future tenses in the book, I felt that present tenses made the events more palpable and, having written many of the events in as close to real-time as possible, I felt it was most accurate that way.

But I’ll let you judge for yourself. The first story I’d like to share is from when I was at my sickest. I couldn’t speak or eat and I was confined to a small bed in a dark room. Then some old friends came to visit and that’s where the story picks up. (For the sake of privacy, all of the names in the story have been changed).

Celeste, my caretaker, tells me that two men have come to see me. She says they are tall and their names sound Russian. A myriad of scenarios runs through my mind—maybe they’re hitmen, or maybe they’re talent scouts looking to place models in a new men’s catalog featuring severely ill patients called “Beefy and Bedbound.”

As it turns out, not to my surprise, neither is the case. The Russians, let’s call them Victor and Karl, are actually of Danish descent. They are a few years older than me. I grew up with them in the Santa Cruz mountains in the 90s. Back then they treated me like a little brother with whom they loved to wrestle and play video games.

When they arrive, Karl, the younger brother, visits with me first. He’s tall, blond, and stylish, which I mostly know from memory because I can barely see him when he walks in the room. It’s pitch dark, but Karl is somehow able to blindly find his way to my bedside.

He calls out my name, like a camper trying to find a friend in a dark forest. He looks around, seemingly lost in the dark cave that is my room.

“This is a fucking trip,” he says, reaching out for my arm.

He grabs my hand and forearm with such strength it steals what little I have. My body is not reacting well, but I try to show my love by weakly squeezing his hand. Without trying, or even knowing what he’s doing, Karl overpowers my feeble grip. My body is now trembling, violently. It’s the same involuntary tremor that I’ve had since I first got sick. It’s usually the result of a number of variables — temperature, sensory overload, physical exhaustion; even something as innocuous as a hug can send my body into fits of convulsions.

Karl notices I’m shaking. I can tell because he loosens his grip on my arm. He doesn’t say anything, though. Neither do I. We just remain in the dark — two lost campers looking for each other.

The tremors get worse, prompting me to whisper something unintelligible into the darkness. Karl doesn’t hear me, though. Then, abruptly, he says goodbye and gets up to leave.

I take a short rest and Celeste asks me if I’m too exhausted to visit with Victor. I am definitely too exhausted, but I have to visit with Victor. He drove six hours from Los Angeles to be here. I have to see him.

Victor walks in and thankfully my tremors settle down a bit. I can’t really see him, but I know that he’s just as tall and handsome as Karl, albeit with darker hair. Victor sits beside me and my nerves continue to settle. We talk about his job and life in Los Angeles. Well, he talks while I listen and try to respond by tracing words on his hand. He doesn’t quite get the message, though. He looks at me the way an older relative looks at a teenager when she tries to explain what Snapchat is. Confusion and awkwardness swirl around us, and I only get more exhausted. Sensing my need to rest, Victor gets up and leans in to give me a hug.

“Give ‘em hell, motherfucker,” he says, quoting some action movie from our childhood. I try to laugh, but wince from the pain it causes.

Victor walks through the dark room and stops at the doorway and nearly collides with Celeste, who has come to show him out.

“Sorry, I forgot to say something,” Victor says. He turns around, making his way through the darkness once again to my bedside.

The tall man bends down to hug me again, but this time he brings his face closer to mine and puts his hands on my head. I prepare for another action movie quote, maybe a line from Die Hard or The Terminator. Instead, Victor whispers something different, something unexpected.

“Man, you . . . you know . . .,” he starts to say, collecting his thoughts. “I love you like a brother. I always have.”

Heavy tears run down his face. Mine too. Together our crying gets more intense and the tears practically jump from his face to mine. If there’s such a thing as projectile crying, that’s what we’re doing. Projectile crying all over each other. It’s not entirely clear whose tears are on my face, but I don’t care, I needed to cry, and I think Victor did too.

I want to say something to him. I want to tell him how much he means to me, how much I cherish the memories of our childhood, and what significance he’s had in my life. I try to whisper the words through clenched teeth, but my throat and jaw muscles burn and become increasingly weaker. The need to speak my mind, and the heartache of not being able to, has only made the moment more palpable, more intense and full of emotion. But no amount of emotion is going to change my circumstances. No matter how hard I try, I can’t speak the words I want to say.

I stop trying and instead place my hands over my heart and point to Victor. He nods in recognition.

We cry some more, a lot more. Then Victor leaves and I wonder if this will be the last time I see him. I also wonder if he thinks it’ll be the last time he’ll see me. I hope it’s not, because I’ve got a lot of fight left in me, a lot of life left to live.

BEFORE YOU GO…

1. Thanks for reading!

2. As I mentioned earlier, I am publishing my memoir, When Force Meets Fate. So far the book has 761 preorders. Thank you to all the wonderful folks who have ordered it. I know some of you haven’t yet and may be wondering where and how to do so. If you haven’t ordered the book, believe it or not, I’m going to ask you to please wait. We’re in the process of getting it ready to be listed with Amazon and other retailers, and those are the orders that will count towards sales rankings and best sellers lists. And that is what I have my sights set on to get the book the exposure it deserves. So, please follow this blog and my social media accounts and I’ll let you know as soon as the book is up on Amazon.

3. In the meantime, if you’d like to donate to support this blog or the promotional campaign for the book, I would be so grateful.

When Force Meets Fate

When Force Meets Fate

Last week I officially kicked off the campaign to publish my memoir, When Force Meets Fate. It has been an incredibly long road to get to this point. I’ll tell you all about it when the book is released. For now, I’m just grateful that people want to read the book. I have spent weeks, months really, preparing to promote this book. And to be honest, I wasn’t sure anyone would want to read it. Part of me thought that, after the trouble I’ve had finding a publisher, maybe all the editors and agents who rejected it were right, maybe there isn’t a market for medical memoirs. But I don’t think that’s true. And now I’m determined to prove them wrong.

So far I’m off to a good start. Within 12 hours of posting the campaign on social media, it had a hundred new per-orders. As I’m writing this, it’s at 232, which is a good start, but it still has a long way to get to my goal of 750.

Now, I should explain how the pre-orders work. I’ve gotten comments from some people who think that as soon as I hit the 750 mark the book will be shipped out the next day. I wish that were the case, but unfortunately, it doesn’t work like that. The publishing process is long. So realistically, I’ll be lucky if the book is released by the end of next year.

But that doesn’t mean that there won’t be progress along the way. As dictated by the publisher, once I reach 750 preorders, the publishing process will begin. I have a solid manuscript ready to give to the publisher, but first I have to sell the pre-orders so they know enough people will buy the book before they invest money and resources into it. So the sooner I get to 750, the sooner the world will get to read this book that I’ve put so much of myself into.

After the goal is met, an editor at Inkshares (the publisher) will do what editors do–edit the manuscript and give me feedback. Eventually I’ll get the manuscript back and I’ll make changes. From there, we will likely have to do more edits, developmental or copy edits, or both. Once all the editing is done, there will be proofing to do, as well as cover design and other fun stuff like that. Finally, once the book is set to be released, I will go through another promotional campaign to introduce the book to new audiences outside of my network of friends, family, and followers.

The nice part about all of this is that those who have already ordered the book, or are planning on ordering it soon, will be among the first people to get it. These fine folks will get to say that they supported the book from the beginning, and will also get frequent updates from me as the book nears its publication date. And for those who order three or more print copies, you will get the option to have your name included in the book.

Before you decide about ordering my memoir, let me tell you about it…

On November 28th, 2010, I went to the gym as usual. But there was nothing normal about that workout — I became violently ill. Eventually, I lost my ability to walk, talk, and eat solid food.

Before I got sick, I was a bodybuilder who could lift more than 400 pounds. Five years later, at age 27, I was bedridden and too weak to hold a toothbrush. I conducted life through hand signals in a dark room, unable to speak or eat. My only nourishment came from bland, liquified meals. I spent every day lying motionless in bed — my body paralyzed by pain and weakness, my mind hijacked by flashes of crunched metal, broken windshields, and exploding gas tanks.

You see, I killed someone in a car accident. Then, a year later, I became sick during that fateful workout. Doctors blamed my illness on depression and anxiety from the car accident. They told me to see a therapist and take antidepressants. But I was already doing those things and none of them improved my health.

I’ve spent the last decade looking for answers — navigating hospitals and doctor’s offices, and figuring out how to live with the uncertainty of having a chronic illness nobody seems to understand. While I’ve found some answers, I’ve lost many parts of my life along the way. I’ve had to give up my job, my autonomy, and almost all of my aspirations. But there’s one thing I haven’t lost: my story.

While I’ve been sick, I’ve managed to tell my story through essays in The New York Times, Los Angeles Times, Washington Post, and others. But my dream has always been to write a book about my battle with chronic illness. Finally, after years of searching for a publisher, I now have the opportunity to publish my memoir. BUT I need your help…

I would be equally grateful if you would share the link to the book with your friends and followers. Doing so will help raise awareness for ME/CFS and Lyme, the diseases I have, and by association, all chronic illnesses.

Additionally, here are some ways you can help me reach my goal:

  1. Offer to help with promotion (whether you’re a graphic designer or publicist or just good at coordinating and organizing things, I would love your help).
  2. Share the book on social media
  3. Tell your friends and family about it in person

You can read several sample chapters of the book on the Inkshares website. I also have put together a book trailer for those who want to see a video of what the book is about:

Lastly, if you have any questions about the book or the pre-order process, please don’t hesitate to reach out to me.