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.