Definition of arthritis by Merriam Webster:inflammation of joints due to infectious, metabolic, or constitutional causes also: a specific arthritic condition.
Everyone will at some point-in-time in their lives discover arthritis in their own bodies. Osteoarthritis is the most common type of arthritis, it is the number one cause of disability in the United States! Today, one in four people has arthritis in this country. There is no cure, but arthritis can be somewhat managed by following your doctor’s recommendations for pain medications, exercise, and diet. Still, arthritis is a painful condition. I have osteoarthritis and can attest to its disabling effects and the pain associated with arthritis.
“When you join the movement, you become part of the answer. No matter how you want to give back, we have the right opportunity. Take part in an event. Advocate on behalf of others with arthritis. Form meaningful connections and Live Yes! locally or online. Take a moment today and join our community of champions to help those with arthritis live their best life.
Nothing like a change in the temperature to take my body from feeling like an 8 or 9 to a 0. My back hurts, the backs of my legs hurt, my head is throbbing. No, I don’t have the Corona. The culprits today seem to be my disc degenerative disease, arthritis, and fibromyalgia. Each one of these runs into the other, so I can’t say for sure what parts of my body are crying out from exactly which one, I only know that I’m hurting and wishing there was something I could do about it.
Now, of course, the temperature probably has nothing scientifically to do about it, but that being so, I know when the weather changes for the worse, or there is some upcoming bad weather or colder temperatures, I hurt more.
◆ If you don’t know what (DDD) Disc Degenerative Disease is, Spine Health at spine-health.com has a good overview.
◆ For Fibromyalgia, a good website to check out is https://www.cdc.gov/arthritis/basics/fibromyalgia.htm as well as
the Mayo Clinic site at https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780.
◆ Did you know that Arthritis is the number one disabling condition in the world? https://www.arthritis.org/. I can tell you that no person in my family has escaped its cruelty. It’s painful and irritating.
What’s happening due to COVID 19:
Because of COVID 19, my ablation surgery for my lower back had to be postponed, so each day that goes by the pain in my lower back continues to get worse. There is nothing I can do about that so I’m forced to do whatever I can use whatever I have to make things better. No amount of Ibuprofen seems to make much difference. While it soothes the pain in the short term, it doesn’t last that long. My prescription medications don’t last a full four hours either, and none of my medication choices completely remove the pain.
Which leads to:
I bring out the heating pad. This soothes. I bring out the ice. It numbs. Within minutes afterward, back comes ye ole pain. Ouch. But during the time it’s working it’s so nice. Other ways to ease body pain from these conditions are listed next. One thing I don’t have but want is a leg lift pillow. A Leg Lift Pillow Wedge gently lifts the knees to provide outstanding support and comfort for your lower back when lying down. The special wedge design eases stress on the spine, correcting posture and aligning the spine to help decrease arthritis back pain.
So what else is helpful for these conditions? Here are seven which one can try:
This form of Chinese medicine involves inserting thin, small needles through the skin at specific acupoints on the body. It is designed to stimulate nerves, muscles and connective tissue, improve blood flow and activate the body’s natural painkillers. Research suggests that it can help relieve pain, and it is used for a wide range of other complaints.
Good for osteoarthritis, fibromyalgia, low back pain, neck and shoulder pain, bursitis, carpal tunnel syndrome
￼Gentle manipulation with moderate pressure has been shown to reduce joint pain and stiffness, and even improve range of motion. However, timing is important. Listen to your body. Massage may not be as helpful during a very active flare when joints are especially tender and sensitive.
Good for osteoarthritis, low back pain, fibromyalgia, rheumatoid arthritis
Tai chi is a Chinese practice that combines gentle flowing movements, deep breathing, and meditation. It has been shown to not only reduce joint pain but also improve range of motion and function, as well as feelings of well-being. The Arthritis Foundation offers a Tai Chi DVD specifically created for people with arthritis.
Good for fibromyalgia, rheumatoid arthritis, osteoarthritis
Yoga is an Indian practice that uses deep breathing, meditation and body pose. It has been shown to decrease joint pain and stiffness, as well as improve relaxation and reduce stress. The Arthritis Foundation offers a Yoga DVD specifically created for people with arthritis.
Good for fibromyalgia, rheumatoid arthritis, osteoarthritis, low back pain
Losing one pound removes four pounds of pressure on swollen, painful joints. Maintain a healthy weight by combining a balanced diet with regular physical activity. Make sure you choose food from the five important food groups (fruits, vegetables, lean protein, low-fat dairy, and whole grains). Try to do 30 minutes of low-impact exercise five days a week.
Good for osteoarthritis
Physical therapists can provide various ways to reduce strain and pressure on painful and swollen joints. These include manual therapy and counseling on proper positioning and body movement. They can also recommend assistive devices such as braces and splints to support joints and shoe inserts to relieve stress on the lower extremities.
Good for all forms of joint pain (back, knee, shoulder, hand, wrist, ankle
These gels work by stimulating sensory nerve endings in the skin, and the body responds by reducing pain signals through the nervous system. Voltaren Gel and capsaicin cream are two options, but a trip down the drugstore aisle can offer even more options without a prescription. Some Hemp options may also work, just make sure you stay away from the THC.
Good for osteoarthritis and fibromyalgia.
What products or services have you found that are helpful for arthritic conditions or Fibromyalgia? Let me know in the comments.
Since most of us are quarantined in our home due to COVID 19, on this Easter weekend, we could take some time to reflect on some of these awareness items for the month of April.
April is Autism Awareness Month. Limb Loss Awareness Month, Parkinson’s Awareness Month, and Stress Awareness Month. This post addresses briefly what these are and gives you resources for more information as well as how to volunteer your time, make a donation, or get involved in other ways.
⁃ Autism is a developmental disorder characterized by difficulties with social interaction and communication, and by restricted and
You can volunteer, donate, or fundraise at Autism Speaks. Check here for the ways: https://act.autismspeaks.org/site/SPageServer/?pagename=walk_volunteer&wmenu=sec_abt_walk
• Limb Loss
⁃ What causes limb loss?
⁃ Reasons for Amputation
⁃ The most common is poor circulation because of the damage or narrowing of the arteries, called peripheral arterial disease. … Other causes for amputation may include Severe injury (from a vehicle accident or serious burn, for example) a Cancerous tumor in the bone or muscle of the limb. Feb 5, 2020, WebMD
And of course, some people are born missing limbs.
You may read more at:
You can volunteer with the Amputee Coalition here: https://www.amputee-coalition.org/work-with-us/
• Parkinson’s Disease
⁃ Parkinson’s Disease. Parkinson’s disease is a brain disorder that leads to shaking, stiffness, and difficulty with walking, balance, and coordination. Parkinson’s symptoms usually begin gradually and get worse over time. As the disease progresses, people may have difficulty walking and talking.
Read more at https://www.nia.nih.gov/health/parkinsons-disease.
– Stress is a feeling of emotional or physical tension. It can come from any event or thought that makes you feel frustrated, angry, or nervous. Stress is your body’s reaction to a challenge or demand. In short bursts, stress can be positive, such as when it helps you avoid danger or meet a deadline. May 5, 2018
If you are experiencing high volumes of stress, sometimes giving, volunteering is the way to go. Psych Central has a wonderful article. Read it here: https://psychcentral.com/blog/how-volunteering-can-help-your-mental-physical-health/
A weighted blanket or duvet would be a perfect addition to your stress relief arsenal, a nice gift for someone living with autism, Parkinson’s, and even for someone living with limb loss. Try something from Weighted Evolution. They have three different options to choose from. and come in several colors. They’re premium bamboo weighted blanket that’ll improve sleep, lower anxiety and increase well-being. Check them out.
My family and extended family have personal connections to limb loss, Parkinson’s, and most definitely stress. Won’t you please take a few moments to think about who in your family, a circle of friends, or acquaintances who deal with any of these issues. Your donation of volunteering time, money, or purchases really makes a difference in the lives of those who deal with these every single day. Won’t you get involved?
Note: Some links in this post are affiliate links. I get a small commission if you click and purchase. Purchasing through this website does not affect your pricing.
Driver Donavan Dunn loads Maddie Holt into the van on Nov. 21, 2017. The only way Maddie and her mother, Meagan Holt, can make the trip to the hospital is by using a service provided by Medicaid called non-emergency medical transportation, or NEMT. (Heidi de Marco/KHN)
Driver Donavan Dunn unloads Maddie Holt after driving her to Seattle Children’s Hospital on Nov. 21, 2017. “I have to drive different,” says Dunn. “It’s always in the back of my mind that I have somebody on board that’s fragile.” (Heidi de Marco/KHN)
Driver Donavan Dunn covers Maddie Holt with her blanket after securing her wheelchair. Dunn says he received special training to transport patients like Maddie, who is loaded onto a motorized platform, wheelchair and all, into the van and then carefully strapped in. (Heidi de Marco/KHN)
JoNel Aleccia, Kaiser Health News Photos by Heidi de MarcoEVERETT, Wash. — Unable to walk or talk, barely able to see or hear, 5-year-old Maddie Holt waits in her wheelchair for a ride to the hospital.The 27-pound girl is dressed in polka-dot pants and a flowered shirt for the trip, plus a red headband with a sparkly bow, two wispy blond ponytails poking out on top.Her parents can’t drive her. They both have disabling vision problems; and, besides, they can’t afford a car. When Maddie was born in 2012 with the rare and usually fatal genetic condition called Zellweger syndrome, Meagan and Brandon Holt, then in their early 20s, were plunged into a world of overwhelming need — and profound poverty.“We lost everything when Maddie got sick,” said Meagan Holt, now 27.Multiple times each month, Maddie sees a team of specialists at Seattle Children’s Hospital who treat her for the condition that has left her nearly blind and deaf, with frequent seizures and life-threatening liver problems.The only way Maddie can make the trip, more than an hour each way, is through a service provided by Medicaid, the nation’s health insurance program started more than 50 years ago as a safety net for the poor.Called non-emergency medical transportation, or NEMT, the benefit is as old as Medicaid itself. From its inception, in 1966, Medicaid has been required to transport people to and from such medical services as mental health counseling sessions, substance abuse treatment, dialysis, physical therapy, adult day care and, in Maddie’s case, visits to specialists.“This is so important,” said Holt. “Now that she’s older and more disabled, it’s crucial.”More than 1 in 5 Americans — about 74 million people — now rely on Medicaid to pay for their health care. The numbers have grown dramatically since the program expanded in 32 states plus the District of Columbia to cover prescription drugs, health screening for children, breast and cervical cancer treatment and nursing home care.With a Republican administration vowing to trim Medicaid, Kaiser Health News is examining how the U.S. has evolved into a “Medicaid Nation,” where millions of Americans rely on the program, directly and indirectly, often unknowingly.Medicaid’s role in transportation is a telling example. Included in the NEMT coverage are nearly 104 million trips each year at a cost of nearly $3 billion, according to a 2013 estimate, the most recent, by Texas researchers.Citing runaway costs and a focus on patients taking responsibility for their health, Republicans have vowed to roll back the benefits, cut federal funding and give states more power to eliminate services they consider unaffordable.Already, states have wide leeway in how to provide and pay for the transportation.Proponents of limiting NEMT say the strategy will cut escalating costs and more closely mirror private insurance benefits, which typically don’t include transportation.They also contend that changes will help curb what government investigators in 2016 warned is “a high risk for fraud and abuse” in the program. In recent years, the Centers for Medicare & Medicaid Services (CMS) reported that a Massachusetts NEMT provider was jailed and fined more than $475,000 for billing for rides attributed to dead people. Two ambulance programs in Connecticut paid almost $600,000 to settle claims that they provided transportation for dialysis patients who didn’t have medical needs for ambulance transportation. And the mother of a Medicaid patient who was authorized to transport her child for treatment billed Medicaid for trips that didn’t take place. She was sentenced to 30 days in jail and ordered to pay $21,500.Last March, Rep. Susan Brooks, an Indiana Republican, introduced a resolution that would have revoked the federal requirement to provide NEMT in an effort to provide states with “flexibility.” That effort stalled.Another Republican proposal in 2017 would have reversed the Affordable Care Act’s Medicaid expansion and reduced federal funding for the NEMT program. It failed, but other efforts by individual states still stand.Former Health and Human Services Secretary Tom Price and CMS Administrator Seema Verma encouraged the nation’s governors to consider NEMT waivers, among other actions, in a March letter to them.“We wish to empower all states to advance the next wave of innovative solutions to Medicaid challenges,” they wrote. The Trump administration has used state waivers to bypass or unravel a number of the Obama administration’s more expansive health policies, and has granted some states’ requests.At least three states, Iowa, Indiana and Kentucky, have received federal waivers — and extensions —allowing them to cut Medicaid transportation services. Massachusetts has a waiver pending.Critics of the cuts worry the trend will accelerate, leaving poor and sick patients with no way to get to medical appointments.“I wouldn’t be surprised to see more of these waivers in the pipeline,” said Joan Alker, executive director of the Georgetown University Center for Children and Families.Because medical transportation isn’t typically covered by the commercial insurance plans most Americans use, it’s unfamiliar to many people and could be seen as unnecessary, said Eliot Fishman, senior director of health policy for Families USA, a nonprofit, nonpartisan consumer health advocacy group.Formerly a Medicaid official in the federal government, Fishman called the transportation program “vital” not only for children with severe disabilities, but also for non-elderly, low-income adults.CMS released results of a 2014 survey of Medicaid users, which found that lack of transportation was the third-greatest barrier to care for adults with disabilities, with 12.2 percent of those patients reporting they couldn’t get a ride to a doctor’s office.“This is not something to be trifled with lightly,” Fishman said. “We’re talking about a lifesaving aspect of the Medicaid program.”About 3.6 million Americans miss or delay non-emergency medical care each year because of transportation problems, according to a 2005 study published by the National Academy of Sciences.That same study analyzed costs for providing NEMT to patients facing 12 common medical conditions and found that providing additional transportation is cost-effective. For four of those conditions — prenatal care, asthma, heart disease and diabetes — medical transportation saved money when the total costs for both transportation and health care were tallied.Medicaid is required to provide NEMT services using the most appropriate and least costly form of transportation, whether that’s taxis, vans or public transit.Most states rely on NEMT brokers or managed-care organizations to administer the transportation services. Other states run the service directly, paying providers on a per-ride basis, while some use local ride services and pay independent taxi firms to shuttle patients.Proponents of revamping NEMT note that disabled children like Maddie and other people with serious disabilities are in little danger of losing services. In Iowa and Indiana, Medicaid transportation remains available to several groups of patients, including those classified as “medically frail,” though the definition of who qualifies can vary widely.In addition, one managed-care provider, Anthem, continues to transport Indiana Medicaid patients, despite the waiver that was first enacted in 2007.Still, Medicaid clients like Fallon Kunz, 29, of Mishawaka, Ind., are often stuck. Kunz, who has cerebral palsy, migraine headaches and chronic pain, uses a power wheelchair. When she was a child, she qualified for door-to-door service to medical appointments, she said.Today, she lives with her father, whose home is outside the route of a Medicaid transit van. Getting to and from medical appointments for her chronic condition is a constant struggle, she said. Taxis are too expensive: $35 each way for a wheelchair-enabled cab.“The only way I can get rides to and from my doctor’s appointment is to ride the 2 miles in my wheelchair, despite all kinds of weather, from my home, across the bridge, to the grocery store,” she said. “Right outside the grocery store is the bus stop. I can catch the regular bus there.”Sometimes, she’s in too much pain or the Indiana weather — warm and humid in the summer, frigid and windy in the winter — is too much to battle and she skips the appointment.“Today I didn’t go because it was too cold and my legs hurt too much,” she said on a December Tuesday. “I didn’t feel like getting blown off the sidewalk.”In Maddie Holt’s case, she was shuttled to Seattle Children’s on a rainy Tuesday morning in a medical van driven by Donavan Dunn, a 47-year-old former big-rig trucker. He works for Northwest Transport, one of several regional brokers that manage NEMT services for Washington state.Dunn said he received special training to transport patients like Maddie, who is loaded onto a motorized platform, wheelchair and all, into the van and then carefully strapped in.“I have to drive different,” said Dunn. “I have to watch my corners, watch my starts, watch my stops. It’s always in the back of my mind that I have somebody on board that’s fragile.”The transportation service can be used only for medical visits to the specialists who treat Maddie’s condition, which is caused by mutations in any one of at least 12 genes. If Meagan Holt needs to pick up prescriptions or get groceries, she leaves Maddie and a second daughter, Olivia, 3, at home with their dad and takes the bus or walks to her destinations.Caring for a severely disabled child is not the life she expected, Meagan Holt said, but she cherishes time with Maddie, who has learned to communicate through tactile sign language spelled into her hand.“She knows about 100 words. She knows the alphabet,” Meagan said. “She likes Disney princesses. She loves ‘Frozen.’”Maddie is one of hundreds of NEMT-eligible children transported to Seattle Children’s each month. Last September, for instance, more than 1,300 clients made more than 3,600 trips at a cost of more than $203,000, according to the Washington Health Care Authority, which oversees the state’s Medicaid program called Apple Health.The need is so great, in fact, that the hospital created a transportation will-call desk to help organize the comings and goings.“When we realized how much transportation is a barrier to getting to your appointment, we decided to do something about it,” said Julie Povick, manager of international exchanges and guest services at Seattle Children’s.“The majority of our patients are in survival mode,” Povick added. “You need a lot of handholding.”But Verma, the architect of Indiana’s Medicaid overhaul plan, has suggested that too much handholding might be “counterproductive” for patients — and bad for the country.In a 2016 Health Affairs essay, Verma noted that early analysis of the effects of curtailing NEMT in Indiana showed that more Medicaid patients with access to the program said transportation was a primary reason for missed appointments than did members without access.“Moreover, 90 percent of [Healthy Indiana Plan] members report having their own transportation or the ability to rely on family and friends for transportation to health care appointments,” she wrote.But Marsha Simon, a Washington, D.C., health policy consultant who has tracked NEMT for years, said Medicaid is the option of last resort. People who are able to get rides on their own already do.“If 90 percent can and 10 percent can’t, what about the 10 percent?” Simon said.It’s a question that haunts Kunz every day.“I’m a college student, I have a cat,” said Kunz, who is studying psychology online at Southern New Hampshire University. “I’m just a regular human trying to do things, and the inaccessibility in this area is ridiculous.”
Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.
King David, Isaiah, Jeremiah: Inclusion of Their Sick and Crippled.
Picture a playground of children picking teams for a game. One by one team captains chooses their teammates. Waiting to be called. in clear apprehension, is the child with red scaly patches on their knees and elbows.
There is a chubby kid who wears glasses looking off into the distance. (more…)
The Holy Bible, shows the stigma of disability and the encouragement and inclusion for the disabled, despite today’s protests and advocacy, and how far have we come.
I believe through writing characters with a disability we can encourage a change in the current dynamic.
This month let’s explore the possibilities of disability and writing with another well-known writer, Moses. The first five books of Old Testament of The Holy Bible, and others, like the wonderful story of Job, are believed to be written by Moses. In his grand adventure story in the book of Exodus, Moses writes of his disability in Exodus 4:6-16[NIV]
Then the LORD said, “Put your hand inside your cloak.” So, Moses put his hand into his cloak, and when he took it out, the skin was leprous —it had become as white as snow.
“Now put it back into your cloak,” he said. So, Moses put his hand back into his cloak, and when he took it out, it was restored, like the rest of his flesh.” (Ex 4:6-7 NIV)
Don’t you imagine Moses horrified? Leprosy! Today, we have come up with an additional name for Leprosy, Hansen’s Disease (HD). Leprosy, or HD, is an infectious disease caused by specific bacteria found in drastically poor and dirty conditions. Today, HD can be cured if treated. People may think of groups of sick, rotting-skinned people cast far away when they hear the word Leprosy. There are; however, significantly fewer leper colonies today. India, Africa, and China are places; however, where places segregating people with HD still exist.
I have psoriasis. In the culture and time period of Moses, I would have been examined by a priest, deemed unclean and sent out for seven days. My psoriasis is visible and incurable, but the symptoms are treatable. I would have remained unclean and sent to live outside my community, unable to live, worship, or associate with my peers or family. Thankfully, we now have medical doctors and the knowledge psoriasis is not contagious.
My daughter likewise has psoriasis. After explaining her condition to the school office after her first outbreak (at age eight), her unknowing teacher removed her from the playground. It was a warm spring day and she wore shorts to school. Since the school office failed to inform the teacher and seeing red, inflamed, scaly patches on my daughter’s knees, shins, and elbows, this teacher sent her to the office to sit away from the playing children. The teacher was afraid my daughter had some hideous contagious disease. The office called me to pick up my daughter at school. You can imagine how upset I was when I arrived to find out why.
The shame and heartbreak for my child! The awful confusion and embarrassment she must have felt in realizing for the first time she was different. I want to think times have changed but unfortunately, I see things like this all the time.
Giving a character a trait like psoriasis, for instance, you can show situations and feelings not only for the character but for those unfamiliar with it and their reactions as well.
Further in Moses’ writings in verses ten through twelve, we find out Moses has a speech impediment.
Moses said to the LORD, “O Lord. I have never been eloquent, neither in the past nor since you have spoken to your servant. I am slow of speech and tongue.” (Ex 4:10 NIV)
Even though Moses had been raised with the best of education as royalty in Egypt, somehow, he was aware of his difference from others. It is thought he may have stuttered or had some other form of speech impediment. I imagine he was mocked, made fun of, or ridiculed at points in his life creating lowered self-esteem and self-confidence.
The LORD said to him, “Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD?
Now go; I will help you speak and will teach you what to say.” (Ex 4:11-12 NIV)
I have a great fondness for verse 12 and I’ve grown closer to the LORD because I know he has plans for me and everyone who has, or may acquire a disability. Here is Moses living with a speech impediment and God is giving him a leading role! Certainly, we as writers can do the same and give a significant role to a character with a disability trait.
But Moses said, “O LORD, please send someone else to do it.” (Ex 4:13 NIV)
Here again is Moses with his lowered self-esteem and self-confidence affirming itself again as he tries to get out of this task the LORD is asking him to do. Moreover, how many of us wait for someone else to write a character in their book with a disability? Perhaps then we won’t have to find out if we can write disability. Personally, I believe anyone can write disability in any genre.
Then the LORD’s anger burned against Moses and he said, “What about your brother, Aaron the Levite? I know he can speak well. He is already on his way to meet you, and his heart will be glad when he sees you.
You shall speak to him and put words in his mouth; I will help both of you speak and will teach you what to do.
He will speak to the people for you, and it will be as if he were your mouth and as if you were God to him.” (Ex 4:14-16 NIV)
The point here is so simple. No person gets through life without help from others. We had parents and teachers in school teaching reading, writing, and arithmetic. We had people to confide in whether it be the LORD, family, friends, or someone else. Help is always available. There are resources everywhere, and yes, people with disabilities are everywhere and many are extremely approachable to answer your questions.
It is written God made man and woman in his own image, and he created each for a reason and a purpose. God did not see Moses as a speech impediment, God saw Moses as His leading character with a speech impediment trait that didn’t matter squat to what needed to be done. God did not see the disability stopping Moses from attaining the goal.
Even if you haven’t read the half-dozen or so books of The Holy Bible thought to be authored by Moses, you probably have heard these stories. As writers, we’ve got an advantage when it comes to sharing similar messages just as God did with Moses. All we need do is make the required changes in our writing.
Main characters need to shine and settle in the minds of readers long after they turn the final page. The actions characters take to achieve story goals must send them toward getting what they want. If not, hopefully, their actions get them to a better understanding of themselves and the world they occupy. This applies to characters in every book. If they don’t then we have a book no one wants to read.
You can create memorable, standout characters with disability traits by seeing your character as a human being first – not an affliction. Do this well and your readers will see them as you do. Already in your mind, you are creating a character with varying traits, so why not add a disability trait to an obvious featured character? Research traits, write what speaks to you as the truth. Observe the world around you. Isn’t this what we as authors do?
In the upcoming months, I want to show you how easy it is to include disability traits when writing your protagonist, or other main characters in your books, stories, or articles. In this five-part series, I’ll show you simple ways to accomplish this. Your characters will shine bright, bold, and beautifully written without a need for a cure of their disability.
If you’re writing a miracle story where the disabled person is saved or cured of their affliction because you think it’s the way it should be or because it’s the type of story you’ve always read, then you really need this series.
Don’t get me wrong; sometimes you want to write a story including a miracle or two. I’ve seen many interesting movies of this variety and loved them. The Holy Bible is full of healing miracles, and I’ll touch on some of these later in the series when we get to Part Two: Matthew, Mark, and Luke Write Scores of Marvels.
If you’ve read my recent interviews with authors who write and carry on their lives with many other interests despite disabilities, then you’ve seen a constant theme regarding their advice and feelings on writing disabilities for characters.
I can only speak for myself, but please don’t save me from my disabilities. I was born hypermobile and with curved legs needing corrective measures. My legs also do not rise to sit in the hip sockets naturally, or so I’ve been told. These limitations did not impair me though I can remember looking at my ugly shoes and wonder why I couldn’t have cute ones.
I didn’t realize I even had a disability at all until adulthood when over time these problems collided with other complications. I researched and asked questions. My parents raised five children, and we didn’t speak in our home about anyone as different from anyone else. Besides, after my legs had been straightened with corrective shoes the cool things I could do with hypermobility came in handy. Limbo!
These things are a small part of a complete person. My name is Kathryn. It is not hypermobility, arthritis, fibromyalgia, psoriasis, autoimmune disorders, or any other label. These are simply names and not me, and should not be your character’s name. They can; however, become part of the complex dynamic set of qualities in making up your characters.
Like you, I am not an expert on all disabilities and must research. In the coming months, I’d like to use the journalistic approach many of us use to write: The Who, What, Why, Where, When, and How. In this series, you will find examples from writer’s in the Bible because the Bible is a text accumulated from thousands of years of writings from varying writers telling many stories and they do include writing of disabilities.
Disability, by the way, is not a term you can find anywhere in The Holy Bible. The Holy Bible speaks plainly using words like blind, deaf, mute, lame, maimed, and other ailments including skin problems of the time they describe as leprosy.
Everyone wants their main characters to shine and settle in the minds of your readers long after they turn the final page. We write our stories by creating:
Who: The Protagonist and other main characters.
What: What do each of my characters want?
Why: Why is it so important for them to get it?
Where: Where do your story and scenes take place?
When: When do the story, and its elements take place
How: How do these events unfold; how do your characters go about specific actions to achieve their story goals.
Your main character, the protagonist, ends up either getting what they wanted or not getting what they wanted. Perhaps the character ends up with a better understanding of themselves and the world. What partially determines the outcome, if not drives characters to a result, can be the traits you assign to them. What better way to create a better understanding of our world and all human-kind but to be inclusive in our own writing. Examples of inclusiveness will be shown in Part Three: King David, Isaiah, and Jeremiah Write of the Sick and Crippled.
You can also create memorable characters with a disability if you can see your character as a human being first and include their disability as a character trait, not an affliction. I see and hear this over and over on social media in reading blogs, book and story reviews. Characters with disabilities written poorly. In interviews with other writers, they’ve told you to research and know your character’s disability. Ditto from me.
You wouldn’t write a character with a job as an accountant without knowing something about the field of accounting. You would have to know something about the type of a person who wanted to be an accountant so you’d talk to an accountant, do a web search, and maybe check out the Bureau of Labor Statistics to make your character as real as possible for the reader. And remember, your character’s name is not Accountant, but merely an occupation, one of the character’s assigned traits. Do the same for your disabled character, and you’ll do your character justice.
I recently read this quote by an unknown author:
God didn’t promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way, if He brings you to it, He will bring you through it.
When I read this, it occurred to me we don’t promise our characters days without pain, or laughter without sorrow, or the sun without the rain because we need to pile on conflict. We do this to ensure the reader can’t help but keep turning the page to see how the main character overcomes all these obstacles we’ve set in their path. So why do most characters exist without a disability trait?
When using a disabled character, everything above is true except the disability itself should not be an obstacle to overcome. Why not think of a way your character might use their disability as an advantage in a scene or throughout the book? When giving other characters traits we design these traits for use by our characters to perform all sorts of feats in pursuit of their goals.
A person with a disability is like any other person and goes through their lives enjoying the wonders of life as you do. Depending on the particular limitation, they have hobbies, thoughts, desires and other feelings. Some need assistance to get from one place to another, to eat, get ready for bed, go to the doctor. Have you ever needed help to get through the day? If so, there is no shame in this. Sounds like most of us, doesn’t it?
Case in point, a woman I know whose daughter was in a terrible car accident, is now a quadriplegic. Since the crash, her daughter takes swimming lessons, is learning to drive a car, and went to a local amusement park where she and her friends rode on the scary rides. And yes, they braved a roller coaster. I’d say this young girl is on her way to becoming happily independent! I am afraid of heights and would not attempt a roller coaster ride.
To get to the roller coaster, she and her friends, along with her mother maneuvered steep steps through thick bodies of people in a teetering wheelchair. Yes, people stared and gaped, but yes, they made it and enjoyed several rides on the roller coaster. They realized the trip down was a treacherous, narrow stairway with even more difficulty and obstacles to get past the crowd but not until they were on their descent. But, she did make it down safely.
They all did this together. We can do this together, you and I, we can write disability. Look around, maybe we can change the world! For more on potential, join me at the end of the series in Part Five: Paul Writes Letters of Potential.
This month I’m featuring John Wiswell, a writer of science fiction, fantasy, and horror with a touch of humor tossed in for good measure. John has a neuromuscular disorder and yet manages to live a very good life. Like most of us, disability is not something we dwell on, but a fact of life we deal with. John is funny, talented, and caring. He knows a little something about writing disabled characters too!
It is difficult to find individuals who are open to discussing disability or writing with a disability. John is not that person. He was gracious to accept my request for a Q & A on how he writes with a disability, and how he feels the disabled should be written.
Please tell us about living with a neuromuscular disorder.
It beats the only alternative, which is being dead. Dead people eat far less chocolate. My condition means full-body pain which intensifies with physical activity and stress, and which directly impacts my respiratory and immune systems. My lungs would love to secede from the union, but my heart’s not in it.
My exercise regime is primarily to increase my threshold of pain, and to improve cardiovascular conditioning second. You want a good threshold because it lets you put up with more. The hypersensitivity has begun to wear out my hearing, which is why if you introduce yourself to me at a party, I absolutely guarantee I am only pretending to hear your name.
As with hearing issues, my physical limitations mean a life of patience. There’s nothing important that I can’t wait for, whether it’s spending the extra fifteen minutes to walk more carefully on my way to the mail box, or in lending an ear to a friend in need. Everything I’ve put up with has made me a better friend.
Do you believe a person living with your neuromuscular disorder affects what a person can, or cannot do in life?
Of course, it does. I am physically incapable of working a 9-to-5 job. I cannot live alone. We all have our limitations, and I heed mine to figure out what I can do.
Last October I drove across Massachusetts alone, the farthest I’ve driven in my entire life. I’ve written novels and I’ve intervened to stop suicides. There’s no end of important work that the chronically ill have a calling for on this earth.
As I said before, my way is about patience. Patience for what you can do in each hour or day is vital. Over the hours of such mindfulness, you build a life. *laughs* Mine’s got a lot of puns and Horror movies.
What motivates you to write despite emotional or physical challenges you face? Did emotional or physical challenges become the reason you write?
At age thirteen, as the victim of medical malpractice, in more pain than I’d ever imagined and alone in my bedroom, J.R.R. Tolkien sent me a gift. Not addressed to me – I mean, the guy was dead. But his The Hobbit and Lord of the Rings, and Stephen King’s Needful Things and Nightmares and Dreamscapes, and Michael Crichton’s Jurassic Park and Terminal Man, and a box load of mainstream thrillers, were all direct gifts. Every turn of a page or flip of an audiobook cassette was my best reason to live through another night. More than to share the struggle of my health, I wanted to write stories that could do that for other people who would be where I was. I wanted to do that for other people. I’d loved storytelling before, but that’s what set me on this path.
So, were you always a writer?
Only enough to pass English class. *laughs* I was awful. I’ve still got a 99-cent notebook with a half-finished 13-year-old John Wiswell’s The Dragon Knight hidden in my room. Part shame, part pride. It took years to get to a decent writing level, and I can’t even name all the teachers, editors, and friends who helped me get there.
Can you tell us about your current writing project?
I’m going to be a little vague since this novel doesn’t have representation yet. *laughs* It’s an intersection of Fantasy and the Prison Industrial Complex. We have many stories about the Evil Empire being taken down by a brave heir-to-a-throne, or warrior, or nobody-hobbit-and-his-Samwise. I’m using the lens of Fantasy to instead show people unfairly imprisoned standing up to the political and economic forces that stuck them there.
There is no single heroic Robin Hood or Nelson Mandela, so much as there is a community of prisoners who have the chance to become a group heroism. Any single person’s heroism is an illusion, but a useful one because it can inspire others to keep up a bravery they don’t even know they have. I’m madly in love with the project. I’d love to come back and talk more about it in the future.
On the shorter side, I’m finishing up an essay for Fireside Magazine on disability in Horror. Specifically, the three big fiascos of disability in Horror in 2016: the stigma of mental illness in 10 Cloverfield Lane, the evil blind man in Don’t Breathe, and the hot mess of ableism that is Donald Trump. I’m sure no one will yell at me over that piece!
What is your writing schedule like when you’re working?
First thing in the morning I review the work I must get done that day before checking email, Twitter, and Reddit. The social media time lets the work gestate in my head, but once I’ve done my round, I work through until lunch. If I’m sluggish, I’ll eat at the desk and keep approaching the scene from different angles, but I always want to make progress before breaking for exercise. I just can’t trust myself to postpone work into the evening, though I am happy to come back in the evening to do more work if I’m on a roll.
What advice can you give to other writers who may have a disability, or a challenge who aren’t sure if they can share their stories, or write a book?
If it’s a challenge to share the stories of your disability, remember that you don’t have to start there. Write whatever engages you. Write fanfic, or LitFic novelettes about elves that race cloud cars around Saturn if it’s what makes you happy. Especially as you develop your style, it’s important not to impose extra anxieties on yourself, and relaying burdens can sometimes do that. It can be difficult to articulate in prose what’s haunted you in life. Approach it when you’re ready, and as you read more, pay attention to how it’s addressed in publishing, and how it isn’t.
Keep an inventory of the vacancies in our fiction where your stories should be. When someone recommends a book because they think it will reflect your experience, and instead it reeks of phony inspiration? When authors pay lip service or perform only superficial inclusion? Shrug these instances off, but don’t forget them, because those are the space you get to break open like no one has before you. That way by the time you’re confident in your ability, you’ll know the places that need your contribution the most.
What advice would you give to those who want to write a book or story using a character who lives with your disability?
Well, you don’t write an able-bodied person obsessing over how much pain they aren’t in, right? Do me the same kindness. Write the character doing something other than fighting a physical disorder. The disorder is a facet of my life, but it’s not how I think about myself most of the time. I think about literary theory, the latest Mamoru Hosoda film, or The Joker. I think about the Joker way too often.
Consider Jo Walton’s beautiful novel, Among Others. It stars a semi-abled teen girl, but your first impressions of her are that she’s a judgmental nerd. Even when physical therapy is the subject of a chapter, it never feels like it defines her for the book. You want to research so you get medical and cultural facts right, but never forget to make them people.
Many writers, especially aspiring writers, want to know the edit and rewrite process of published writers. Tell us what your style of editing and rewriting looks like.
In first composition, I write passionately, often thousands of words per day. Once upon a time it was a few hundred words, but I built up to this. With novels, I start with a skeleton of the events that absolutely must happen and then make up the rest on the fly. With short stories and flash fiction, I’ll just let loose and write towards a few plot beats.
I’m a big believer in letting an early draft breathe. In almost all cases, when I’ve cleaned up a first draft enough to feel it’s finished, I save it and move to other projects. In a couple weeks or months, I’ll come back to it and review it with less familiar eyes. This greatly helps in cutting and shaping the early draft into something more functional.
When it’s as good as I can get it with a reasonable amount of work, I ask betas to read it. Their feedback lets me know how many more rounds of drafting it needs. If I’m lucky, the first round of feedback lets me finish a short story in an afternoon. *laughs* I’m not a very lucky person.
Is there anything else you’d like to share with us on the topic of disability and writing?
This is my weird issue I carry around all the time, but I would love more stories where characters with different disabilities meet and bond. Remember in The Stand, when Nick Andros meets Tom Cullen? Nick is deaf and relies on writing, while Tom has a cognitive disability and can’t read. The two of them meet in the post-apocalypse and are so jazzed to find another living person, and becoming one of my favorite road duos ever. This kind of intersection of disabilities so rarely happens in fiction. It’s even wilder because Nick fails to explain his disability, but Tom figures it out because he remembers meeting another deaf person before.
Disabled people, just part of a world and thought process. Rad! For any flaws, King had in disability representation, that model still sticks in my heart. Mishell Baker’s Borderline also does some cracking work with this. I’m excited for her sequel, Phantom Pains.
So more of that, please. And fewer stories where it’s the lone tragic paraplegic surrounded by the non-disabled people who pity them.
Oh – and if you’re writing someone else’s disability, you already know to do the research. That means medical research, but also reading accounts and fiction by people with the condition. I appreciate it when someone remembers their inspirations like this, and shouts them out. If you don’t care enough about their work to recommend it in public, or to signal boost them and their causes, then why write about them in the first place? Our culture gets stronger when we’re mutually supportive.
The ninth annual World Autism Awareness Day is April 2, 2017, and April is Autism Awareness Month with the colorful puzzle piece ribbon becoming more familiar with its icon. Each year, autism organizations around the world recognize this day with events to raise funds and increase awareness.
I am pleased that I could ask John Elders Robison writer of articles, short stories, books, and the author of “look me in the eye, my life with Asperger’s, and Switched On, A Memoir of Brain Change and Emotional Awakening” to share information with us about Asperger’s, a form of Autism.
Mr. Robison did not know there was a name for his condition until he was an adult. John maneuvered life before the age of forty knowing he was different, but not knowing why.
In my interview with John this month, I show the realistic view of one person’s experience with Asperger’s, as you will see in my questions and his answers to them. John speaks frankly, giving us a better understanding of how one Aspergian sees the world. John’s precise informational process gives us a glimpse into how he processes information in his answering the questions as I presented them to him.
John, what is Asperger’s?
Asperger’s is one of the conditions that make up the autism spectrum. It’s therefore a form of autism. People with Asperger’s tend to have clear logical speech but be somewhat oblivious to the non-verbal parts of communication – we may miss things like body language or subtle facial expressions. In the rest of this Q&A I refer to “autistic people” as opposed to Asperger people or Asperger’s because Asperger’s is just one of several words for autism. One person might be described as autistic, another as having autism, another PDD-NOS. They may all look and act the same and in that sense the different diagnostic labels are interchangeable.
Autism is characterized by language impairment or weak ability to read nonverbal cues or messages; restricted interests, obsessions, or unusual focus; or unusual patterns of speech or expression. But remember – “unusual” is only in the mind of a non-autistic observer. To us, we are normal and you typicals are the freaks. Many autistic people have medical challenges like anxiety, depression, epilepsy, intestinal distress, or sleep troubles.
Autistic people fall at all points on the IQ spectrum. The combination of autism and intellectual disability is particularly debilitating.
How is living with Asperger’s different than/from a person not living with Asperger’s?
A person not living with Asperger’s is, by definition, dead. That is what “not living” means, and it is a fundamentally different thing from living with Asperger’s. To the best of my knowledge dead people are indifferent to diagnostic terms we living people think are important.
Do you think living with Asperger’s affects what a person can, or cannot do in life? Why, or why not?
Autism is one of many things that can shape us. Autism certainly affects what we are good at or not good at, and so it may influence what we can or want to do. That said, there is no single answer to the question of how an individual may be affected.
Autistic people do lots of things – work with animals, be engineers, work in theatre or the arts, or even teach. That said, many of us are unemployed or underemployed thanks to disability. At the same time, some autistic people are extraordinarily successful.
Some people see autism as primarily a disability. Others (like me) see autism as a mix of disability and exceptionality. While there are some things I’m not so good at (like reading facial expressions) there are other things I’m exceptionally good at (like photography or automotive engineering) and I attribute both to autism.
What motivates you write despite any emotional challenges you face? Did your emotional challenges become the reason you felt you had to write?
I write articles and stories about cars because that’s what we do for work here. I tell stories about what we find and do and emotion hasn’t got much to do with it.
When I learned about autism in me, the knowledge was life-changing in a good way, and that inspired me to share my stories with other people, so in that sense I guess you could say the emotional challenges are a big reason why I write about autism and difference.
Can you tell us about your current writing project(s)?
I’ve just started to explore the question of whether some of the Polynesian navigators who helped colonize the Pacific islands over the past 3,000 years were autistic.
I’m also writing a story about the role of autistic people in the establishment of the Anglican church in colonial Virginia.
And our high school students are building a vintage Bentley Continental to race the Carrera Panamericana through Mexico, and I expect to be writing about that.
What’s your best advice for those who wish to write characters with Autism/Asperger’s in their books and stories?
If you are an autistic person yourself or have an autistic family member you should have some insight into the character. Otherwise, before writing about autism, ask an actual autistic person. There is a lot of misunderstand and wrong assumptions are the rule, not the exception.
And John’s writing life?
Mostly I write by typing on computer. As a result, my handwriting has deteriorated. To address that I bought a diary-type notebook and I’m writing in it often, by hand. There is a slight improvement but correction of that deficiency may take years, and I will never have penmanship to the standard set by our literate ancestors.
I write books and long articles upstairs in my library at home, or on the computer with the big monitor at my work. I am fortunate to own my workplace so I am free to write on “company time.”
I don’t really have a schedule. Sometimes I don’t do anything for a month and then I might write 20,000 words over a long-concentrated weekend.
Over four books I have generally beat the deadlines set by the publisher and I’ve been faster with my end of the edits than them, and I take that as evidence that the schedule is good enough.
For the past ten years, most of my writing has been done on Mac computers. I write short stories and such on a laptop but I prefer the big desktop monitor for editing and most other tasks because I can compare things side by side and it’s just bigger and clearer.
Whenever I have a new book released I get a new pen to sign copies for readers. Doing that is sort of a superstition, like believing your dog might roll over and die if you don’t give his left ear a quick tug on the way out the door. You can dismiss superstitions if you want, but after three or four dead dogs you start to question the wisdom of that thinking.
There are, of course, some people who don’t even have dogs and don’t care what pen they sign books with but I am not one of them.
For SWITCHED ON I am using an ST Dupont fountain pen, but as I said, the writing instrument changes with some frequency. As for paper – when you sign books you really see a difference in the quality of papers used in hardcover and paperback books. Buy hardcovers if you want your books to last!
As for dogs – we have two – an Imperial Chinese War Pug, and a Bull Dog.
What advice can you give to other writers who may have a disability, or a challenge who aren’t sure if they can share their stories, or write a book?
Millions of people have a desire to share their stories. Very few of those stories end up published by major houses and of those even fewer are widely read. But not every storyteller seeks a bestseller. Some write stories for their families. Some might write for a local autism support group. Others dream of having their story self-published or printed by a small press. Others write for their own therapy.
Think about what you want; what is the objective of your writing? Ask yourself if the story is truly unique, and who would want to read it, and why. Remember that the writing it what makes or breaks it; a good writer can make a seemingly ordinary story into a page turner.
You just never know what stories will be popular or well received, and which won’t.
My first editor – Rachel Klayman at Random House – once told me publishing is a world of broken dreams and I think that’s true. Books never sell to publishers for as much as you hope. They don’t get bought by the public in the quantities you or the publisher hopes for. And often the critics are harsh. The rewards are few and the criticisms many. But still people do it.
Writers always seem to want to know how other writer’s write, edit, and rewrite. What is your style of editing your work?
I usually write something, set it aside, and then go back to it and look at it from the remove of a bit of time. Also, my wife reads what I write, and sometimes other people. They comment and I make revisions. My agent reads initial drafts before we turn them in, but once the edit process starts with the publisher it’s just me and them, back and forth through the various steps.
Is there anything else you’d like to share with readers at AlmostAnAuthor?
Establish yourself in some good and stable line of work that affords you time to write, while also providing a steady living. If you are lucky you will even be able to write about your work one day.
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