Why the Disability Struggle Impacts All Humans

It’s Monday morning, and while my red blood count maintains there is nothing wrong, my body shows the signs of anemia, which feel better when I follow a strict regimen of healthy eating, vitamin D and iron supplements… but that is something my primary care physician and I will discuss at my annual physical in September. And he will probably express disappointment that I have regained the ten pounds I lost last year.

It’s true for all of us– when we’re sick or weak or broken, we take care of ourselves (or we try to, I hope) and when we feel better, the routines that help us maintain that wellness fall to the wayside and lean toward repeating the same problems. I know I have a 20-year history of struggling with low ferritin reserves, why don’t I do better to always keep a routine of quasi-regular supplements?

Many disabilities are permanent but not progressive. And most people experience disability at some point in their lifetime– either congenital, temporary or permanent. Any person with a disability or aging person can explain the weight of co-morbidity, that while their various issues alone may not be progressive, when combined with our temporary or new ailments can make life exponentially harder.

My mother struggles to understand how I could be so easygoing and mobile as a kid while experiencing more falls and discomfort now. As my mother, she is no stranger to the aches and pains and limitations of aging, but she didn’t connect that the running and playing and constant activity I had as a child kept my muscles looser and healthy in a way that I can’t match as a fairly sedentary adult. That’s part of the reason why I’ve usually had a part-time job that requires movement and pursued strength training as a hobby.

I know that I need to lose 30 to 40 pounds. As a person aging with cerebral palsy, this would help my cardiovascular system and help take so much stress off my musculoskeletal system. But I have learned, through years of strength training and nutritional counseling that my body reacts strongly to salt and sugar, which means if I wish to lose weight I need to not only increase my activity level, but also cook whole foods, every time. The vicious circle of “I don’t exercise enough because my body hurts/I can’t breath/I’m tired” perpetuates itself because the only way to get past the discomfort is to do it… and survive and persist. (And then there’s the ironic reality that you can overdo it, and hurt yourself trying to do what’s right.)

This is not a disability struggle. It’s a human one.

All people experience a disappointment in and/or failure of their body. It’s a point Johanna Hevda and Julia Watts Belser both point out in their work. They claim that everyone experiences disability within their lifetime, but I extend that same idea to say that all people at some point experience some sort of body dysmorphia. Even if your body works, and is completely normal, people will experience dissatisfaction with it at some point. Maybe you hate your hair, struggle with your weight, identify as trans, wish you were a better athlete. All of these experiences have nothing to do with disability, but stem from the body.

A pile of three disabilty-themed books. The top one, How to Tell When We Will Die: On Pain, Disability and Doom by Johanna Hedva, is pink with red stars. The next on the pile is a beige memoir, FIfty Years of Walking with Friends, by DeAnna Quietwater Noriega. The one on the bottom is vivid yellow, Loving Our Own Bones, by Julia Watts Belser.

Disability Pride Month is celebrated in July because that’s the month when the Americans with Disabilities Act was passed. I didn’t put that together until today, so if you needed that tidbit of knowledge, there you go. I happened to order a whole bunch of disability-themed books in late June because my good friend Nancy Scott told me I should be doing more writing in that space, and she’s right, and she’s tired of hearing me say, “when I write my medical advocacy memoir.”

The four books from the disability space that I read this Disability Pride Month:

  1. How to Tell When We Will Die: On Pain, Disability, and Doom by Johanna Hedva
  2. A Disability History of The United States by Kim E. Nielsen
  3. Fifty Years of Walking with Friends by DeAnna Quietwater Noriega
  4. Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole by Julia Watts Belser

I have been working to expand my collection of books by writers with disabilities. I currently have read books that range from poetry to books with characters on the autism spectrum, though none of these books include my fascination with medical fiction, a realm where Michael Crichton and Frieda McFadden spend some time, and one of my favorite memoirs (An Exact Replica of a Figment of My Imagination) which covers pregnancy and pregnancy loss simultaneously. My Goodreads shelf of “disability” books is visible here.

Poets with disabilities on my read list include Jennifer Bartlett, Larry Eigner, Susan Glass and Nancy Scott. Twentieth-century memoirists on my shelf who explore cerebral palsy include Christy Brown and Marie Killilea, and then there are the people I know, like Tylia Flores (we connected via the Internet) and Peter Altschul (who like DeAnna above is a member of the Behind Our Eyes writing group).

Here’s a very brief review for each of these four books:

A copy of A Disability History of the United States
  1. On Hedva: I already wrote a long piece about this one, primarily to keep my own notes accessible for future use. You can read that here. Hedva is a queer writer who uses they/them pronouns and has issues with chronic pain and bipolar depression. Their essays are not a cohesive unit, but based on an essay that gained them a publishing contract when it went viral. Their greater thoughts about disability are steeped in personal experience, and often tied to their sexual experiences. But this author challenges us to view the difference between capacity and capability, just because we are capable of something does not mean we have the capacity to do it.
  2. On Neilson: Nielson ended up researching disability as an accident (or serendipity?) as she worked on her history dissertation. Hedva writes philosophically about the capitalist resistance to disabled bodies (as we are worthless if we are not productive to society) and Nielson uses her history background to explore how the capitalist framework has disenfranchised all bodies that are not able-bodied white men, which I found hysterical because one of my publishing company’s initial projects was an anthology, Not an Able-Bodied White Man with Money. See that book here. She weaves together the plights of women, people of color, and people with disabilities into the same historical framework– all of them had bodies deemed inadequate and incapable and inferior by white men.
  3. On Noreiga: This was my first time reading one of Noriega’s books. She’s a self-published author of indigenous heritage who lost her sight as a child. As someone on the waiting list for a service dog, I thought it would be fun to start with her experiences with her (I believe) eight seeing-eye guide dogs. The memoir covered the first decade-ish of Noreiga’s life in autobiography format. The final chapters each provided a summary of her later-in-life seeing-eye guide dogs. While the book did offer insight as to how these dogs perform their complex duties and build relationships with their handlers, the primary focus of the book is Noreiga’s college years and first few years of marriage.
  4. On Watts: Nancy Scott ordered a Braille copy of this from the library at the same time that I ordered the print copy, and that was sheer coincidence. Some of Watts’ ideas are beautiful, like her interpretation of observing the weekly Sabbath as a tribute to not only spirituality but also to her body as an opportunity for rest. Like Heva and Nielson, she laments the push for capitalist societies for valuing bodies only on their capacity to do work– but I think all of these writers need to consider the role of industrialization in all of this. We are no longer in agrarian societies where families live and work together communally and therefore can cater the work to individual strengths and weaknesses. Watts treads a strange line. As a queer rabbi with cerebral palsy and a wheelchair user, she tends to tell us minimal information about herself, yet connect her spiritual journey to her physical one without giving us all the details. In many passages, her affluence shows through, that her financial resources and life situation have provided her with more opportunity that the average disabled person. And she seems to have a fascination with the potential amount of times blindness appears in the Old Testament. As said before, her ideas and themes overlap with Hedva and Nielson, and she focuses on building a relationship with God where you are whole and representative of God in your broken/disabled state. She applies this to beaity standards as well.

I will be revisiting some of these thoughts in my Substack this week,

Thoughts raised by Johanna Hedva

Screenshot of the Goodreads review that is also quoted in the blog piece

I put Johanna Hedva’s How to Tell When We Will Die: On Pain, Disability and Doom on my wish list probably when it was a new release.

The cover design is lovely and the bio of the author is enough to draw interest:

Johanna Hedva (they/them) is a Korean American writer, artist and musician who was raised in Los Angeles by a family of witches and now lives in LA and Berlin…

I guess the first step of my thoughts on the book would be to share my Goodreads review with you.

I gave the book five stars even though the most Generation X parts of my soul wanted to give it four, because despite how much I disagree with some of her points– I can’t stop thinking about them.

My Goodreads Review

I almost read this in one day– Johanna Hedva’s essays are poetic, academic, and provocative. Johanna has a variety of physical and mental health issues that them outside the realm of standard able-bodies. Yet, sexually and identity also play a huge role in their experience.

Johanna is about a decade younger than me, and in many ways I do not agree with their statements and conclusions, (I am a GenX white woman with cerebral palsy from a low socio-economic background and family of addicts, and if I try really hard and expend a lot of energy I can pass as able-bodied– some similarities to Johanna, enough to understand them) but their philosophy is never wrong.

When talking to my congenitally blind friend, who is a Boomer, about this collection, my friend said, “sounds like I wouldn’t like her.” And I said that she probably wouldn’t, but she still might like the book.

This book has a lot to chew on.”

So what are some of their thoughts and my thoughts on their thoughts?

Random comments first.

  1. The title is a shout-out to astrology.
  2. Their book deal for this collection stemmed from the essay Sick Woman Theory which went viral. The attention it garnered made them more of a figurehead and/or activist than they ever intended to be. The essay Sick Woman Theory is not nearly as interesting as her response to that essay, Why It’s Taking So Long.
  3. As a member of GenX, I have some discomfort with how the queer community throws around labels. Johanna identifies as a queer, and not as a woman, which is fine, but I guess I remember the days when people didn’t need to define their identity as concisely as we do now. You didn’t need to label every aspect in which you are weird. It’s okay to just be different.

So let’s look closer at some of their points.

Essay One: “How to Tell When We Will Die”

Opening paragraph:

“Heroes die on the battlefield, never from chronic pain. Diarrhea never makes its way into myth. Tragedies are devoid of menstrual cramps.” Johanna has my full attention. On the second page of the essay, they talk about the representation of disability in early and twentieth century film, and how disabled people become “flattened by some insidious super-cripple myth.” Throughout this first essay, Johanna is tossing around some serious academic critical theory before suddenly turning into memoir…

They speak about not receiving a diagnosis for their ailments until in graduate school (despite later saying that the conditions were inherited from their mother and grandmother, so I think the statement should have been that they could not get a label on the diagnosis– she does state that doctors were “baffled” by her symptoms and “dismissive of their validity.”). And they mention that they stayed on for a second master’s degree to keep their student medical benefits to the tune of $250,000, that led to a career in the arts where they refused any job that did not meet their aesthetic. They chose poverty. They chose art.

I’m wondering why– even if they didn’t want a standard job with employee-sponsored health insurance– they didn’t just buy health insurance or take on medical debt instead of a quarter of a million dollars in student loans.

But then there are gems like “You do not have to be disabled to experience ableism” and “no matter how it arrives, disability will arrive for everyone, sooner or later” (which they repeat in the last essay.) And Johanna points out that the biggest ableist fantasy is that we control our bodies, and we will always be able to control our bodies.

Johanna talks a lot about her mother’s addictions, and the abuse they suffered at their mother’s hands, and of their own mental health issues. Her first suicide attempt happened at age nine, when she took a bottle of sleeping pills, and when she did not die, she carried on with her life.

We are more than 25 pages into the book when we learn that mental health plays a significant role in her disability, which we later (not in this essay) learn includes endometriosis and chronic shingles. I understand that people with disabilities do not owe any sort of explanation of their ailments to anyone, but if you are writing a book about disability, I believe that information should be front and center.

And in this essay she mentions her love of death and doom metal. You can hear some of her music here on YouTube.

Essay Two: “Sick Woman Theory

The essay that started it all. I think it’s really important to understand that they called it “sick woman theory” because regardless of how they identify, the medical establishment and the world consider them a “sick woman” and they are seen as a “sick woman.” They frame their theory that our capitalist world is designed for the existence of “white, straight, healthy, neurotypical, upper- and middle-class, cis- and able-bodied man who makes his home in a wealthy country, has never not had health insurance, and whose importance to society is everywhere recognized and maybe explicit by their society, at the expense of everyone else.” To a certain extent, I want to call out a “Yes, bitch,” (as they toss around this phrase) but at the same token– would the experience be the same in the developping world/Global south.

Essay Three: “The Blast Radius of Disability”

I have to say that I love this concept, “The Blast Radius of Disability.” Disability doesn’t effect one person, one episode, or one place or time. Instead, it impacts everything around it, everyhing that it touches. Johanna speaks of time dvided into before and after sickmess, but I can’t help but wonder how they can divide time in such a way when mental illness entered their life so early they can’t really remember a before, can they?

It is in this essay that Johanna mentions that individuals with disabilities must operate according to “crip time” not clock time, doing things as the body deems itself capable not as the world says we have to do them. On one hand, I understand the point, but that’s not how the world works. I have to believe that there has to be a balance, of not overdoing things in order to conform to the mainstream standard and hurt oneself in the process. And there’s an inference that the entire world runs on the same precision, which isn’t true. There is “island time,” “Latin time,” and “African time.” Each culture has its own realtionship with time, so maybe they need to find a place and a rhythm that works for them.

Essay Four: “In Defense of De-Persons”

A discussion of capitalism and mental illness.

Essay Five: “Get Well Soon”

“Are these my limits, or are these the limits of the world?” Johanna reminds us that disability is part of a dichotomy– the ill being inactive while the healthy take action, the disabled remain still while the rest of the world creates revolutions.

Essay Six: “Notes on Activism (aka Notes on Failure)”

Organizing is exhausting, Johanna begins. Activism, they write, “reminds us how the world actually is, not now how we would like it to be.” Activism often comes off with hypocrisy– like buying your anti-racism books off Amazon.com. Their other question: How can you balance the need as an activism to care for others, yet also take care of yourself?

Essay Seven: “Letter to A Young Doctor”

I didn’t like this one. It seemed to repeat some of other concepts. Johanna tells this doctor all the other things they have already told us and will tell us differently in future essays. The doctor approached Johanna asking for advice.

Essay Eight: “Soft Blues”

Or “The Summer of the 12-inch cock.” The first several essays that are reflections on Johanna’s sexuality. And an in-depth exploration of her experience in a mental hospital for depression that led to her experiencing an entire summer of bipolar mania.

Essay Nine: “Can I Hit You?”

The BDSM essay. Which has the most amazing line: “Pain is the price I must pay to be awake to life.”

Essay Ten: “The Freak”

Another relationship essay. The only highlight I have in the whole essay is when Johanna discusses capability and capacity. They remind us that just because we are capable of something does not mean we have the capacity for it at this time.

Essay Eleven: “Notes on Trash Talk (aka Notes on Community)”

Interesting essay where Johanna gives a view of their obsession with fighting, boxing, wrestling and MMA, and how the way a coach talks to a losing athlete is the type of trash talk we could use more of as disabled people.

The next few essays are all Johanna’s entertainment criticism. I will skip those, even though they do circle around to disability as it all does.

Essay Fifteen: “Notes on Ambition (aka Notes on Survival)

This is a complex one– looking at what we all need, versus what we want, and how many of our ambitions are actually motivating us toward ideals that might not be our own.

Essay Sixteen: “Hedva’s Disability Rider.”

They explore this rider more in a later essay, the one I mention that speaks back to the original “Sick Woman Theory” and presents the repercussions. But here, Hedva gives us the document they send to institutions that invite her to perform. I feel like some of the items on the rider should not be listed as conditions for employment, but instead factors of how much they should charge for their fee. If you know you need a business class airline seat on the aisle, you make sure you only say yes if the organizers give you enough money. Some of the informational items are valid: like allergies. But Johanna also uses the rider as a way to advocate for everyone with disabilities and call attention to how excluded people with disabilities are. They ask for sign language interpreters, live captioning, all-gender restrooms, wheelchair accessibility and audio description.

They say they know they won’t get all of it, but they like to have the conversation and point out how unaccessible and exclusionary the world is.

And this is why hardcore advocacy is exhausting, friends.

While we would like to invite all the people with disabilities to everything, why provide the services if the people aren’t there? I know Nan and I have attended shows at DeSales University where they have one performance with audio description and live captions. These shows are made accessible with grants. Start there.

Essay Seventeen: “Room Day”

Johanna’s partner is Johannes, a German citizen, which is why they now live in Berlin most of the year so they can get better medical care. She does not mention her partner until essay seventeen. The partner to whom the book is dedicated.

Essay Eighteen: “Soft Until It Gets Hard”

How can you not love this title? Another relationship essay.

Essay Nineteen: “Why It’s Taking So Long”

In this essay, Johanna discusses the rider and how when they send the rider to an individual, they would prefer not to see that individual in the context of the institution but as a person with whom they can have a conversation. Teaching moments? Which is exactly what they say later on the page when they discuss they are now part of a “learning experience” that they did not want to be. And here’s another great observation– if an invitation comes in for any event that involves the concept of care in any way and is being organized by solely white women, Johanna won’t do it.

The essay falters between the idea that Johanna never wanted to be an advocate but now that they have the power, they feel a requirement to advocate for everyone.

Here are some great points:

  • Capitalism is so demanding, it makes us all more disabled
  • Even when we are told we “have to,” humans can’t truly do anything alone
  • It’s a fallacy that all you need is will, and the proper manifestation of it
  • Care is often framed as debt
  • You might be winning, but maybe there’s no prize

Essay Twenty: “The Hag in Charge”

A lovely adventure through Greece that offers some recollection of Johanna’s poverty and her spiritual beliefs.

A line that reminded me of Nan, who says this often: some disabled people (Nan and I like to say it’s normally able-bodied people who become disabled) have a fantasy of healing, “and then hate themselves when it fails to arrive for them.”

Disability Lit Review, part one

Let me offer a bit of an author’s note on this one, or perhaps a caveat, that I only got five hours of sleep last night, and my body hurts today. This is the third night this week I got six hours or less of sleep, due to some fairly intense routine change that is kicking my ass. And the pain I am experiencing today is not my standard everyday pain, but similar pain in a more twitchy and unnerving form.

And this may lead to some of my more strident tones. Or perhaps I always feel my opinions with a certain sharpness, but ordinarily I present them after the application of a filter.

I will try to keep my aggressive aggravation to myself, but no promises.

Earlier this month, I drafted a “bird piece” for the Behind Our Eyes anthology, a collection in the works to highlight the members of the Behind Our Eyes email-based writers group for writers with disabilities. I joined the group a couple years ago after participating on the fringes through Nancy Scott, who, in cheap amusement and most things disability, is my partner in crime. I normally lurk in the group, but recently heard they were actively looking for bird stories. The anthology features a variety of sections and one themed block focuses on animals.

I wrote a creative non-ficiton piece about my Goffin’s cockatoo and I navigating disability together, with a present-day, present tense story of Nala plucking her feathers due to her anxiety and me trying to figure out why. The plucking led to her not being able to fly, which gave her a temporary mobility disability. So I used this present-day situation to frame flashbacks exploring why Nala was anxious, but also looking at my mobility disability and the similarities and conditions that made us good for one another. The anthology committee wanted just a bird story, so they’ll be publishing the present-day section of my interactions with Nala.

This was the first of two pieces I wished to submit to disability-associated anthologies. I have drafted the second, but that one is specifically for disabled voices to share what we wished the outside world understood. I revisited my first draft, and tightened it somewhat, and thought the piece sounded like an introductory chapter to my upcoming medical advocacy memoir. That piece has two themes– the beginning talks about how my family had too many problems for me to realize I was “disabled” which seques into the second half, about me finding out my body and assembling an adequate medical team.

Nan has been encouraging me to write more in the disability space, her paraphrased quote being that I could have a real impact there. And in my experience, there are two main types of voices in the world of disability literature. The most mainstream voice is the voice of the writer-first– commonly a writer who experienced illness or disability not from birth, with either some sort of privilege or talent. The second is the disability activist who is not a writer, but congenitally-disabled and fighting for their right and the resources to exist. (And I guess the third would be the hobby disabled memoirist.)

I find myself crossing all these categories. I have the natural writing talent, my background as a professional journalist, my credentials as an academic and historian, and the experience of a congenital disability. Yet, I have the privilege of being a white woman, and if I can borrow the term, I can “pass” as an able-bodied person if I focus really hard and am having a good day. I have the type of cerebral palsy that you might not notice or that might make you stare at my feet and knees.

This morning on social media, I saw a post from a disabled Iraqi/Afghan War veteran stating that he needed to retire his service dog as she had had a seizure. The man said that his career involved much travel and public speaking as an influencer and motivational speaker. I searched the internet for him and found a very basic web site, some YouTube videos and an Instagram, but no information about him or the experiences that lead him to be a motivational speaker.

Now, in everyday life, people with disabilities do not owe information or an explanation to anyone regarding details about their private lives or medical conditions. But if you build a career on your experience coming back from a disability, I think some of that information is owed to prove the validity of that expertise. (And if you are an influencer, a Google search should turn up some information about you.)

What I am about to say next is going to make me sound like an ass, and I mention to not to invalidate the experience of people with disabilities who fit the categories as I am about to describe– but the lived experience of a Cis white heterosexual male in the United States of America who develops a disability after voluntary service with the military is very different from the experience of a person who has never been able to walk, has a limb difference, total blindness or any of the multitude of disabilities that occur at birth.

(Add in family resources, and there’s another layer of complexity.)

Some people have more choices. Some people have more privilege.

ALL people living with ANY TYPE of chronic illness or disability deserve the same respect, but one must understand that they all come from different places. As all humans do.

This has led me into a brief literature review of the disability space, one I have only explored via finding books written by ordinary people on their experience with disability. My list included the third anthology from Behind Our Eyes and a service dog memoir by one of its members, Peter Altschul. I have a collection of books with connections to cerebral palsy: several modern memoirs by Tylia Flores, a pre mid-20th century memoir by Dubliner Christy Brown, and Karen, a parent’s cerebral palsy memoir that takes place about 10 years after Christy Brown, and then poetry and academic work by Jennifer Bartlett. And a highly academic poetry book by blind poet Susan Glass.

A copy of A Disability History of the United States

I recognized my need to diversify… especially as I start more work on my medical advocacy memoir and consider making more deliberate strides into this space.

Here’s what I ordered:

  • A Disability History of the United States by Kim E. Nielsen. I believe this was Nielsen’s Ph.D. thesis in history. In her introduction, she mentions that she is a white woman of certain privilege, and she ended up in this space by accident, with no connection to disability. Then, shortly after receiving a publishing contract for this book, her teen daughter contracted an illness that made her a wheelchair user and gave her a more personal glimpse of the issues she had talked about.

I finished this book yesterday, and it’s definitely an important work, exploring hundreds of years of attitudes and events about disabled bodies. Nielsen aligns disability rights with other civil rights, for women, for Blacks, for gays. She presents the idea that any body that is not strong, healthy, heterosexual, white and male faces the same discrimination and lack of belonging in the American social structure. And ALL of these bodies are disabled and deemed as unsatisfactory as part of the capitalistic labor machine.

It’s an important work that shows how ideas about disability evolved and how legal status/rights have changed.

Today I started:

  • How to Tell When We Will Die: On Pain, Disability and Doom by Johanna Hedva. This is Johanna’s fourth book, and the bio on the back lists them as a Korean American writer, artist and musician raised in Los Angeles raised by a family of witches.
A pile of three disabilty-themed books. The top one, How to Tell When We Will Die: On Pain, Disability and Doom by Johanna Hedva, is pink with red stars. The next on the pile is a beige memoir, FIfty Years of Walking with Friends, by DeAnna Quietwater Noriega. The one on the bottom is vivid yellow, Loving Our Own Bones, by Julia Watts Belser.

Their introduction mirrors a lot of the same concepts about the issues disabled people create for American capitalism. Their experience though is one of disability after chronic illness. I have only reached page 28, and Johanna mentions a decade of chasing a diagnosis, but states that they inherited chronic illness from their mother and grandmother– which leads me to wonder why a diagnosis was such a mystery?

I suspect the reality is that Johanna had trouble finding a doctor to label the diagnosis officially, which is the “doctors are idiots” and the “American healthcare is broken” problem not that Johanna didn’t know what was wrong.

I hope Johanna eventually shares their disability with the reader, but as of yet it has not happened, and again– I know no one is entitled to know the private details of another person’s medical situation, but it is important when one is standing in a public space claiming authority regarding such issues.

The other two books on my new acquisitions are:

  • Fifty Years of Walking with Friends, another guide dog memoir by BOE member DeAnna Quietwater Noriega. I added this one to the list because of Noriega’s Native American heritage.
  • Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole by Julia Bessler Watts. Julia is a queer rabbi. This book was recommended and you had me at queer rabbi.

First Day in Dublin, Ireland

First off, forgive any typos or strange word choice in this entry as we came to Dublin via a Delta flight from Reagan National Airport in Washington, D.C., to Logan Airport in Boston, and then the transatlantic (in coach) to Dublin. The first flight left D.C. at about 6:30 and landed a little after eight, and the second flight left a little after 11 p.m. Eastern Time and landed at 8:45 a.m. Dublin time.

I thought it sounded like plenty of time to sleep– but I didn’t account for the four-hour time difference (which changes back to five hours Sunday) which meant the plane technically left at a little after 11 p.m. and landed at 4:45 a.m. eastern time. And on top of that, they did a dinner meal service right after take-off (which M and I both skipped) and that meant we couldn’t recline our seats until midnight.

Not that reclining our seats added comfort. Those seats felt like sitting on a boulder and today my ass hurts.

And then they did a light breakfast and drink service at the equivalent of 4 a.m. eastern.

If you were good at falling alseep on planes, you are looking at 4 hours of sleep on this flight. I am not good at falling asleep on planes. My watch says I got one hour and 18 minutes of sleep, but M and I think that figure might be closer to two hours.

But enough bitching. I’m thrilled to be here and having a great time, even if my meager nap got interrupted meaning I only gained another ten minutes of sleep.

That is also why I am not dealing with too many photos right now. I will do a photo gallery later.

Also: random side note– the European Union rules on how web sites can collect data are very different from the United States so I am constantly reviewing cookies and practices that I use every day at home as if I am seeing them for the first time. Accept cookies?

We are staying in the Hyatt Centric, The Liberties, Dublin. My room has a pod-fed espresso machine, an electric tea kettle, a selection of teas, unrefrigerated milk in a glass jar, and a bottle opener. I wondered if I needed it for something– the bottle opener– but then I realized:

I’m in Ireland. The assumption is everyone in Ireland needs a bottle opener at some point of the day.

M. mentioned to the immigration officer at the airport that it was colder than he expected. And the officer replied:

“It’s always warm in the pub.”

M thought he said “in the pool.”

I reminded him we were in Ireland. Not pool.

The main event today was touring Trinity College with M’s family member doing her graduate work here.

The tower in the one photo from Trinity houses a bell, and there’s a superstition that if you walk under the bell and it rings, you will fail your exams. And the bell rings at random intervals, according to our student attending, so you never know…

View from my room

M and I have separate rooms and I chose this one downstairs– and it does not have the traditional desired view. M’s room looks to the street and St. Patrick’s Catherdral.

But I like this view, the angles of the hotel, it’s modern lines, and the traditional brick building in the distance.

Doors seem to be a theme for me on this initial day of wandering 10,000 steps around Dublin. So here’s another… for all my classic punk fans…

Day 1 of my Spring Break: Harrisburg, Pa., and Gaithersburg, Md.

Eva and I are traveling to Washington, D.C., so that I may grab a flight to Dublin with my traveling companion M on Wednesday.

M. and I have not traveled in about a decade, and this is probably the first time we are traveling someplace where they are not shooting each other.

But that’s another story.

Eva is on spring break and for some strange, serendipitous reason, she has no pet clients this weekend. She’s exhausted after finishing her home renovation project on our hallway.

I could have taken Amtrak from Philly to D.C., as a matter of fact that is how I am getting home. But Eva wanted to visit D.C., and thought it might be nice to visit the National Zoo. She had hoped she could introduce her boyfriend to our friends in D.C. but he is traveling to a welding competition.

Now, Eva didn’t want to make the 3.5 hour one-way trip to D.C. and then turned around a few hours later and drive home alone.

But we learned none of our friends would be home Saturday until late.

So we booked a room at the Doubletree in Gaithersburg, MD, basically because they had a breakfast, an indoor/outdoor pool and who doesn’t love the warm cookies?

And Eva never had the warm cookie experience.

So at 9:30 we checked the old in the car– she’s an old girl and has been acting a tad funny lately about her oil. It disappears and then reappears. Maybe she has some build-up. We know she’s burning some… but to be safe, we check her often. And today we checked her cool in the flat garage

She looked good. But we have oil with us just in case.

We headed to Sheetz, and by then I already needed to pee. Eva put gas in the car. I hoped to find the cookies and cream puff things but every since I decided to try them, they never have that flavor.

Next, we went to Grocery Outlet. I need my famous $7 pen set. This cheap set of gel pens comes in a plastic case and I love them. Each set lasts about 6 months before my favorite colors start running out.

Meanwhile, Eva was in charge of road trip snacks. She selected:

  • 2 C4 energy drinks in zero sugar, very fruity flavors. I find these are easier to stomach than coffee or soda when temperature can not be maintained. Plus we both like them so we can share, and save space in the cupholders.
  • A present for someone’s birthday that has nothing to do with this trip
  • sunglasses
  • A massive can of bar mix nuts
  • A fairly big box of those nutty buddy style wafer bars that Little Debbie makes but instead they were made by Nature Valley and trying to be fancy. 20 of them.
  • A bag of beef jerky– some plain, some ranch, some buffalo, all mixed in one bag

We were on the road by 10.

Around 11, we got a phone call– the dog had bit the neighbor and the neighbor went to the ER. Now, it was a minor bite, but it broke skin, and the neighbor wanted to make sure he didn’t need shots/antibiotics. But that’s another story. But it sure did put a stressful spin on the next couple hours.

At 11:30, we arrived at Midtown Scholar Books, once voted bookstore of the year by Publisher Weekly. See my review here on the Parisian Phoenix blog. (It was $4.35 to park for 90 minutes in downtown Harrisburg.)

Eva had a doctor appointment via Zoom at noon so she took that in the car and then we visited Broad Street Market. Apparently, oldest market in America in continuous operation. We weren’t hungry– all those road trip snacks but they had all kinds of ethnic food from Chinese (I think) to Korean, Jamaican to African.

1 p.m. We crossed the state line into Maryland while on the phone with Larry Sceurman.

At 2:10 we arrived at Doubletree Washington DC North in Gaithersburg MD (about 40 minutes from M’s house). We got our cookies and our parking pass. We didn’t really need our keys because I used Hilton’s digital check-in, chose my room and they had emailed me that it was ready and activated my digital key which I can use from my phone.

I picked a room on the end of the lower level, away from any noise but fairly close to the indoor/outdoor pool.

And there’s a frozen yogurt vending machine in the lobby.

Panera and CVS are within a third of a mile and there’s a food truck in the shady looking parking lot across the street that has good reviews on Google Maps. I wonder what time they open in the morning… They don’t… the internet says they are closed Sundays. I might have to head out there tonight…

Eva and I went to Habit Burger and Grill because it was three-in-the-afternoon and we were hungry but not insanely hungry and while it is a chain, it’s not one we knew. I saw it had a free self-serve pepper bar with jalapenos, banana peppers and pepperocini. So we had to investigate.

I had a nice fish sandwich and limeade.

We came back to the hotel and I did some stuff for the business while Eva did some schoolwork. We plan to go swimming tonight.

Some days go off the rails (or weird reasons why I didn’t get my work done)

Whether you’re a small business owner like me or a homemaker or someone who works a corporate 9 to 5 or whatever, it often feels impossible to make a dent in life’s responsibilities.

I think as I get older, and as one friend keeps reminding me I have a significant birthday coming up in May, I realize it doesn’t matter. Stuff eventually gets done or it doesn’t and the important/necessary stuff rises to the top.

Or maybe that’s just because I’m good at prioritizing and fairly awesome at time management.

The last week or so has been exhausting and/or exciting depending on your point of view. I’ve scheduled a storytelling/written word workshop with Larry Sceurman at Hellertown Library at the end of May. I’m strategizing a memoir workshop this summer in the suburbs of Philadelphia. I helped with and sold books at a storytelling event at Bethlehem’s Ice House (hosted by Patchwork Storytelling Guild). I sold books and talked with poets at the third annual Poet Palooza 3 at Book & Puppet Company in downtown Easton.

I received word that Lehigh Valley Community Foundation approved my application for a Pennsylvania Creative Entrepreneurship grant, which I will use for national and local advertising. I performed my duties as president at Greater Lehigh Valley Writers Group and heard a fantastic presentation by Jill Peters.

And book orders have picked up. Still not to the level as last year, but enough to give me hope. I am finishing my local candidate profiles for Armchair Lehigh Valley.

Yesterday I went to the eye doctor and spent more than $500 for exam and glasses (at which point I was told, before being given the price, that they knocked 30% off everything because my insurance was crap). I tried on every pair of Parisian Phoenix pink glasses.

That got me thinking– as everything often does– that with glasses normally being updated every two years I pay about $30/month for eyesight.

And walking home from the eye doctor, I fell. So that sucked. But I’m fine, so yeah!

I received a call from my life insurance company today that I scheduled last week to convert my term life insurance into something more permanent. The bad news is, it’s probably going to cost triple my current policy. But that’s an conversation for me and another agent next week. Sigh. The insurance person kept me on the phone for 45 minutes and we may be continuing the conversation this weekend as she has an idea for a book.

In other news, my blind friend Nan received a print poetry book from a small press recently. We had ordered a braille one, and so I tracked down their email and reached out to see if there had been a mistake. Turns out they made an error so Nan will be getting her book. It felt good to resolve that and get her the book. And I wanted the small press to know there is a real need for these braille books.

Also today I applied for and received a business American Express. I’ve had a personal AmEx for quite some time but now the business is established enough that it can have and should have its own card. No more Ingram bills on my personal card. Yay! (And yes, I do have business banking, but the business account doesn’t always have the assets for large print orders.)

Finally, let me offer you this photo of Eva’s dog wearing Gayle’s sticker from Jury Duty.

Resources and their impact on disability memoir

I don’t know about you, but as I grow older, routines become more and more important to me– because otherwise I simply don’t squeeze all the tasks and items into my day that I think I should. That’s how things I enjoy, like updating this blog, get neglected.

For instance, I never wrote an entry about my single-shot marathon drive from Atlanta home.

But I was working with Nancy yesterday (and she managed to submit something like four poems and an essay while I was with her) and she nudged me in that subtle way. I mentioned that I had gone to the cardiologist the day prior, and that led to a discussion of the fact that most of my current writing time has been dedicated to my medical advocacy/ disability memoir.

“Good,” Nancy said. “I think that’s an important one. Because unlike so many people that write disability books, you’re a normal person.”

I had to pause for a moment and I almost laughed.

“Because so many books by disabled authors come from people with resources?”

While that statement is not 100% true– I know several disabled authors who use the Amazon platform to promote and distribute their fiction– it says something about disability-themed literature and memoir of past generations (I am Generation X and Nan is a Boomer.)

Spending some time in the Barnes & Noble database

For fun, I just searched DISABILITY on the Barnes & Noble website. The search yielded only academic titles. I searched DISABILITY FICTION and got only 22 results, mostly academic books, and one book only available in ebook, published by Draft2Digital, and clicking on the author’s link led me to believe he is an independent author who has published at least twelve titles only in ebook format. The author is also a horror filmmaker, nearing 60-years-old and appears to be white and able-bodied.

When I search DISABILITY MEMOIR, I find twenty results– many of them self-published, several by Boomers (on topics like polio, at least three of those, hey GenZ have you heard of polio? Another on surviving Tuberculosis and living in sanitariums), many on parenting, and many on learning disabilities.

MEDICAL MEMOIRS yielded more results (50 instead of 20) and the boldest words that popped from thumbnails were cancer and survival and the occasional miracle. When I entered my own condition, CEREBRAL PALSY, the search returned more than 130 results– most either children’s picture books or academic books.

Now, I know some of you are thinking, “Why is she looking at Barnes & Noble– everyone knows there are more books on Amazon.”

Barnes & Noble, as the remaining giant big-box book retailer, offers a standard on what can be considered mainstream and the minimum threshold of “wide” versus Amazon-only distribution. And Barnes & Noble has started doing some more gatekeeping as to what self-published or print-on-demand titles can appear on their web site.

Resource #1: Time

Anyone who publishes– even if self-publishing– has a certain amount of financial or support-system resources at their disposal. It might be as simple as the self-published author who solely uses Amazon has a live-in caretaker, which could be a family member or a paid staff person, which allows them the extra time to sit at their computer and write. As a person with a disability, whether that be a mobility issue, a congenital limb difference or vision and other sensory impairment or something else, it takes a lot longer to do basic tasks alone. Ever try to button a shirt alone with a broken arm? It takes longer to bathe, to cook, to eat, to use the toilet. The whole day just takes longer and takes more energy.

And that’s without considering what it takes to monitor and take medications, how often one needs to attend physical therapy appointments or doctor visits, and potential nuisances like arranging accessible transportation, buying supplies like incontinence supplies or feeding tubes, and monitoring one’s health.

Resource #2: Knowledge/connections

There is a profoundly different experience for disabled people based on socio-economic status. There is also a gap between experiences for those people who qualify for public services, those who have private resources and those who fall in the middle.

During the pandemic, I qualified for Medicaid for the first time in my life pretty much because I lost my job at the height of Covid and did not receive any unemployment because only workers displaced by Covid made it into the system. I did eventually receive unemployment, but it literally hit my bank account two days after I started my job at Stitch Fix. Because I had zero income, I qualified for food stamps and Medicaid. My Medicaid kicked in November 1, 2020 and my job at Stitch Fix started one week later and they provided health insurance on day one.

I submitted all my paperwork. My food stamps ended, but Medicaid did not, because of the pandemic. Despite me periodically sending updates reinforcing that I had private insurance, my Medicaid remained. Do you know when they canceled it? When Stitch Fix laid me off. I submitted my application to renew my Medicaid and they denied me because their system hadn’t uploaded my daughter’s prove of being a college student and I didn’t notice. The system didn’t send me a notice that said, “Hey, this item is missing.” Just denied the whole application. So, I have spent the last year as a disabled entrepreneur with a high deductible medical plan which means I recently paid $2,000 out of pocket for an MRI. It also means I am not seeing my specialists as often as I should.

Meanwhile, I know someone who recently not only qualified for Medicaid but also receives government disability payments, also an entrepreneur, who probably makes more money than I do. I have an Office of Vocational Rehab Counselor who has listed me in her highest category of disability, but in the last six months, I have received nothing actionable as support.

Access to social workers, whether professionally in a hospital or even through friends or non-profits can help make sense of what is possible, but without guidance it’s really hard. Another barrier is technology. That one might make a reader bristle, but not all technology makes life easier. Sometimes technology requires practical or financial resources to be useful. Nancy, as a blind person, has struggled with internet access. She has never owned a computer, and she has tried various ways to use the world wide web. Her Fire tablet worked well until the charger failed way too quickly. She has a Blindshell cell phone she uses on wi-fi to check her gmail account, and an Alexa device to handle music, time and reminders.

But recently, NASA discontinued its TV station, guiding viewers to use the NASA Plus app instead. Alexa does not have a skill for NASA Plus. Her Blindshell can’t open links from NASA Plus. And she can occasionally stumble upon a usable link for NASA’s videos on YouTube, but not reliably. She’s now considering a Fire Stick, but she’s considered she won’t be able to easily scroll the thumbnails to find the launches that interest her.

I mention this because the resource of knowledge and connections, many of which we consider technology-dependent, will change the disability experience. The people who will produce memoirs will have more access to knowledge and technology. Even in able-bodied households, not everyone has access to these items.

Resource #3: Money

A lot of the memoirs I have read come from households with financial resources. It could be as simple as having a stay-at-home mom who could be a caretaker. It could be as complex as a disabled person having access to expensive custom schools or having enough savings to take time off work for long treatments or training opportunities. These advantages lead to better education, better adaptability in the world and also empower the person who had these opportunities stories they can share with the world.

Not to mention many disabled authors work with specialty editors or vanity publishers to create their work and that requires cold, hard cash.

Resource #4: Support

Similar to the time resource, support covers the system that helps a person on a day-to-day or as-needed basis. The support of family, friends and caretakers contributes to a person’s time, their skill and their self-worth to lead them to write a book. That could also include a teacher or mentor. Some disabled people might need a typist, or an outside researcher, to help them with their tasks.

For disabled people who use most of their time and energy on survival items, writing a book might not be a possibility. This also covers the emotional support– I would guess that most disabled published authors are people who have been told they have a message worth sharing.

Resource #5: Past Experience

Finally, I consider past experience a resource. This may pertain more to medical memoirs versus disability memoirs, but that is my gut feeling and not fact. Most people want to read “hopeful” stories with happy endings. And therefore I wonder if memoirs that feature “miracles” or “cures” might be more appealing and accepted than chronic illness/lifelong disability books.

If an able-bodied person experiences an illness or an accident and writes a book, he or she will write with their previous experience in mine. The journey present in the story will be “before,” “accident/diagnosis,” “after,” and “end,” whether than end is death, healing, or acceptance. Stories with this framework will inadvertently compare the disability or medical part of the story to the unhindered before time, and the goal will always be to regain what was lost.

For most disabled people, the reality is learning to live with the condition and doing what is needed to prevent a decline in quality of life.

Regardless of what resources or goals a writer has when dealing with their own disability or medical situation, it’s important to remember when we read memoir that everyone’s lives have different challenges and their are many ways to deal with any situation.

Poetic solo adventures

Today, I donned my publisher hat and I drove to Bernards Township Public Library in Basking Ridge to support poet and filmmaker McKenna Graf. McKenna publisher her second volume of poetry with Parisian Phoenix Publishing after self-publishing her poetry debut. Her next event is in Manhattan on August 22, 6 p.m., at the Barnes & Noble on the Upper East Side.

I started my day with a squawking cockatoo, and then proceeded to come downstairs with the intent to write a draft of my upcoming political profiles for Armchair Lehigh Valley and I did an hour of work on it. But for some reason sifting through Milou Mackenzie’s different Pennsylvania house bills spiked my anxiety and allowed that little voice to take hold. You know– the negative thoughts voice that says, “You can’t do this.” And/or “all your effort is meaningless.”

But, I know I have a road trip today so I eat a hearty breakfast, deliver Eva to her father’s car, and order my Panera iced tea. In the adventurous spirit of a road trip, I go to a different Panera and I love that there drive-through is a straight lane. But what I do not realize as I drive up is that they finally tore down the Phillipsburg Mall.

They have been saying that they were going to demolish the Phillipsburg Mall probably for a decade– and all the reports stating that the anchor store Kohls would be the only part of the mall left standing. This Panera was on one of the pad sites at the mall. (A quick Google search tells me that Crown American opened the mall in 1985, a key time period for malls, and that the stores vacated in 2019-2020. Supposedly a warehouse will be erected on the site. Because every warehouse needs a department store next door.)

In the late 1990s and early 2000s, especially when I worked in the area as a journalist, the Phillipsburg Mall was probably my favorite in the region.

The Author Talk

The drive to the library was uneventful. The Bernards Township Public Library appears a fairly modern vibes with the architectural feel of a small elementary school. McKenna did a wonderful job reading her poems and answered questions with ease during the chat portion of the program.

These are the moments when I very much love what I do, and these are also the moments when I get to contemplate how much the community built by a publisher influences everyone involved with it.

McKenna said several astute, thought-provoking items:

  • Self-publishing her first book put her in control of her own destiny instead of waiting for someone to deem her worthy. I would describe this a little differently: that self-publishing gave her a hands-on understanding of the industry which allows her to navigate and negotiate her future with less naivete.

  • Each book/work/poem represents a moment in time, and as such, they will never be perfect. And despite their imperfections, poems will always convey the feeling they need to share.

  • During her recent intensive geology class that toured National Parks in Utah and Arizona, poetry allowed her to grapple with something difficult. As she struggled to learn the complex scientific knowledge of the course, she used poetry to translate it. And she then made herself a photo book of the unedited work to capture the moment in time.

McKenna sold some books. I made some social media posts. I wove around the streets of Basking Ridge to entertain myself and I headed home.

Road Trips Snacks

On the way home, if I wanted to be a nice person, I needed to stop and put gas in the car. I noticed a sign for QuickCheck and that’s one of Eva’s favorites so I figured I would stop there. I discovered it was on Perryville Road, which is pretty darn close to her surname. I figured I’d run in the convenience store and get a snack (but hopefully nothing too crazy as I have lost four pounds) and then get gas.

I decided on a cup of their Kris Kringle iced coffee with light cream, apple slices and Lenny & Larry’s complete creme bricks… I mean cookies. The package said they had 15 grams of protein and 130 calories. So why not?

Gas was fifty cents a gallon cheaper than in Pennsylvania and it’s always a nice treat to have someone else pump it. The coffee had coconut and vanilla notes, which made me regret getting a small as I could have easily finished a large. I ate the apple slices (probably my first serving of fresh fruit this week) while waiting for the car to fill.

And wouldn’t you know as soon as I ended up on the road again the damn oil light came on. And the car is scheduled for an oil change in eight days.

The drive home was also lovely, and I enjoyed singing along to my music.

But if you’re curious about the cookies–

They tasted like hard discs of sprinkles. The vanilla flavor was that candy-ish flavor one gets from sprinkles, but the texture was hard, and I don’t mean hard like a cookie wafer but hard like an almond. When I got home to examine them closer I saw each serving had 130 calories, but each package of six cookies was three servings. So I had wasted almost 300 calories on some awful cookies. In addition to protein, they had some potassium and iron. The ingredient list looks like the whole cookie is wheat, pea protein and oil.

Journaling as a reset

A good portion of what I am going to write today will probably reappear in a smoother format over on the Parisian Phoenix Publishing page. (ParisianPhoenix.com) My brain is swirling. My frustration tolerance is low. Anxiety is taking advantage of point one and point two to paralyze my concentration.

These are growing pains. These are the realities that accompany change and even more so, success.

Cocktail contemplations

Last night, I really would have loved a cold beer to sit and sip while I pondered the events of the last few days– but my frugal self would not justify spending money on something so frivolous nor did I want to put on shoes. So I opted to make a cocktail of whatever we had in the house. We had grenadine (the kind with alcohol), creme de menthe and creme de cacoa, because a few weeks ago I had a craving for a grasshopper. That was short-lived. Since then, my occasional cocktail has been a creme de cacao and Coke Zero, because who doesn’t appreciate a chocolate Coke?

Last night I opted to skip the mixer and head toward “Dirty Girl Scout” territory, but I didn’t measure so my pour led to slightly chocolatey mint drink.

Why did I desire a cocktail last night? Because…

Sex Down South Atlanta

I was sitting in my reading chair, hoping to capitalize on the cool evening breeze and spend some time with my cats and my naughty Goffin’s cockatoo. I need to proofread McKenna Graf’s upcoming poetry book, review Larry Sceurman’s new middle-grade dragon story, and somehow manage to not only score some time for my ghostwriting client, but also prepare for the upcoming comic con in Phillipsburg and finish my workshop for Greater Lehigh Valley Writers Group.

Let’s be honest. Comic con is a Friday problem, and this was Wednesday. GLVWG is a Sunday problem, and again this is Wednesday. But the other stuff was/is yesterday/today problems.

I receive an email from the organizers of Sex Down South Atlanta. It talked about the 200+ presenters that proposed workshops and they were sorry they could not accept them all. They told us all we could have a discount code to come to the conference and shared the list of accepted workshops.

Now, a friend of mine had proposed a workshop and I was her accountability partner for getting the proposal in. At the last minute she told me to enter a proposal and I laughed– because what do I have to offer at a big sex conference? She said they had a category for writing and erotica.

So, I entered a proposal.

I opened the file attached to the email last night to see if my friend’s workshop was selected. I did not see it. I scroll through the list and reach #31 and see: Explore Your Fantasies and Write Your Own Erotica, and I think, that sounds like a nice offering. As I finish the sentence, my jaw drops to the floor. It reads: Explore Your Fantasies and Write Your Own Erotica with Angel.

My workshop description

Which means the acceptances and the rejections went out in the same email. My proposal was accepted.

I went through my files looking for the proposal and sighed with relief that 1. I have it and 2. It’s reasonable. I spent the rest of the evening talking with friends. Because I’m shocked. And excited. And wondering how the heck I am going to pull off traveling to Atlanta. But that’s a future problem.

So that’s why I needed a cocktail and why my brain is even more overextended and fried than usual.

First Day of GLVWG Write Stuff

So today was the first day of the 2024 Write Stuff Conference with Amy Deardon on marketing and Melissa Koberlein on podcasting. The morning presentation provided an overview marketing checklist. The afternoon workshop allowed participants to workshop some ideas for podcasting to provide a realistic overview of what it takes to put a podcast together.

The conference will continue through April 13th, with a small workshop setting with keynote Jonathan Maberry tomorrow and a series of sessions on Saturday with Maberry, Deardon, Koberlein and YA author Jordan Sonnenblick and appointments with editor Donna Tollarico of Hippocampus magazine, agent Mark Gottlieb and agent Marie Lamba. As I maneuvered cookies from the dining salon to our meeting room 1,000 steps away on the other side of the hotel, I ran into Jonathan as he was checking into the hotel.

I saw the leftover cookies on the buffet table and felt it was my duty to transport some to the workshop room to combat the afternoon slump.

It’s always interesting to see the energy in the room and what people are looking for from an event such as a writers conference.

Personally, I’ve been devouring books by Sonnenblick and Maberry– finishing Curveball last night and INK earlier this week.