So guess what, I hate Hallmark. I really do, I can’t stand Hallmark cards and most everything else they produce. Lets face facts; even their TV movies have reduced Christmas to kissing your significant other under some mistletoe while in an idyllic Christmas tree parking lot. They have taken complex human emotions and reduced them to something I can buy for $1.78 at my local grocery store with my toilet paper, apples, and deodorant. In love and need a card, that’s row 8 column B. In lust but need to mask it as love, that’s row 9 column C. Have a friend that fell off a cliff rock climbing which accelerated his rheumatoid arthritis, degenerative disk disease, caused severe osteoarthritis, and now lives is constant chronic paid…crap on a stick, we don’t have a card for that. Maybe you can use the card in row 11 column H with some poem we cut a couple of lines from but left enough room for you to write “get well soon” even though he is chronic which means he technically never will get well. I’m a simple and stupid man but even my emotional ineptness can’t be boiled down to an item that costs $1.78 and neither should yours.  

Why the rant on Hallmark you ask considering all the events, disease, and problems currently in the world? Ranting about Hallmark does seem like a strange and or bizarre opening for a blog post. This is especially true since I am considered an epatient. Although I do honestly dislike Hallmark cards and think they have cheapened the human experience, I do have a larger point. Ready?

I am a huge fan of the podcast Design Lab with Bon Ku (https://podcasts.apple.com/us/podcast/design-lab-with-bon-ku/id1529983261). For those of you that don’t know, Dr. Bon Ku examines healthcare through the lens of Design Thinking. What is Design Thinking you ask? Simply put, it is human centered problem solving by starting with the question How Might We…? Here is an simple example, how might we design and produce a cane designed specifically for Big Al since he is a 6”5’ rheumatoid arthritis patient with severe osteoarthritis and degenerative disk disease which was accelerated by his rock climbing accident and his 5 or 7 car wrecks? My human centered problem is most traditional canes were not made for my particular story. Most canes are designed and produced to meet the needs of 75% of patients who are 55 to 75 years old (I’m not that old and my conditions present differently because of my physical trauma which means my needs are unique for a lack of a better word). Another example would be the manufacturer who only gets into the business of canes just for the profits, they don’t care about any patient or their individual needs. Ultimately what this podcast is doing is putting the human back into our healthcare system. Dr. Ku is returning the care in healthcare back to the patients, not profits or the size of ones checkbook.

On August 24, Dr. Bon Ku interviewed Laura Mauldin (https://podcasts.apple.com/us/podcast/design-lab-with-bon-ku/id1529983261). Laura Mauldin is an associated professor at the University of Connecticut who studies and writes on disability care and technology. As far as I can remember, this was my first exposure to her work.

Now I’ll be the first to admit, even under the best of intentions with the most empathic advocates, doctors, and caregivers, disability can quickly turn into a contentious issue. Questions like what is disability, who should be considered disabled, how does one qualify for disability is not easy to answer? I’ve seen these questions cause heated debate and arguments amongst fellow epatient advocates. I have to respect Laura Mauldin for bringing attention to such a complex and important topic.

I’m a perfect example of how complex the disability question can be. Due to my rock-climbing fall I now have moderate to severe limitations in my left arm and especially my left wrist. Due to my bilateral hip dysplasia, my left hip is resurfaced and my right hip is replaced which has cause permanent range of motion issues for me. Right now my rheumatoid arthritis is mainly in my hands, which means that even typing this post is difficult and causing me pain. Let’s not forgot the 2 plates and 8 screws currently in my neck that is making everything from drying my hair with a towel to driving hard. However, I have received criticism from fellow chronic patients in the rheumatoid arthritis and chronic pain communities because they believe that I’m not truly disabled because I don’t present as being sick enough. Or they (I feel like DJ Khaled) claim I’m not disabled because I still work full-time and often take my chronic pain with me hiking or while trying to improve my outdoor photography skills. More often than not, disability is invisible; it’s the symptoms of disability that we see. To go back to my opening paragraph, Hallmark either does not under stand this nuance or it doesn’t seem to care.

Much of what Laura talked about during her conversation on Bon’s podcast was based on the idea that our society, culture, etc “hates” disability. The word hate was used frequently throughout the conversation. As a chronic patient who by most definitions would be considered disabled, I had a real issue with her use of the word “hate”. I don’t think society hates disability; it doesn’t understand disability, which is different. Thanks to Hallmark, society wants to operate under the $1.78 methodology because it makes for a much simpler operation. However, my own personal disabled story requires at least a $5.00 card. Unfortunately there are to many chronic patients whose story requires a $10, $20, or even a $100 card in order to fully understand and explain.

Let’s take a look at disabled parking and who qualifies for it. Just out of curiosity, I searched and found the following definition regarding who qualifies for a disability parking placard in Idaho: “A disabled person includes any person who is unable to walk 200 feet or more unassisted by another person or without the aid of a walker, crutches, braces, prosthetic device or a wheelchair; or without great difficulty or discomfort due to any of the following impairment types: neurologic, orthopedic, respiratory, cardiac, arthritic, blindness, or the loss of function or absence of a limb or limbs.” (https://itd.idaho.gov/dmv/vehicleservices/documents/vsdisabl.pdf).

Due to severe pain I spent last week using my cane. As I mentioned earlier, I have had multiple orthopedic surgeries that have resulted in total joint replacement, partial replacement, or installation of multiple plates/screws. I currently have many arthritic confirmed conditions and loss of full function of a limb with neurological issues. By anyone’s interpretation of this definition I qualify. However, my primary doctor told me he would not issue me a permit until I “started losing foot races to 80 year old grandma’s”. It’s hard to argue against my primary doctor’s logic.

Quick side story. I had to travel to the University of Utah for my hip resurfacing surgery. At that time, hip resurfacing was still new and as far as my team and I knew, no one in Idaho was performing this surgery. After the surgery I was on crutches for a few weeks. While at the grocery store with dad, he started yelling at a lady in a high-end car who had an Idaho disability-parking placard. Apparently her doctor had issued one because she had some form of Multiple Sclerosis (MS) if I remember right. I’m by no means wanting to start a debate on whether or not someone with MS deserves a placard or not (that wasn’t my dads point either, his argument was based on who really needed that spot at that moment), my only point is at that moment I was losing all races to 80 year old grandma’s and that lady looked like she could run a marathon at that time in her life. Disability is not a simple yes or not question like Hallmark or even society assumes, it is more complex and nuanced.

Ready for the big conclusion? Let’s see if I am.

In order to provide its customer’s with $1.78 cards, Hallmark has to take a complex issue like disability and boil it down to yes or no. In order to further simplify it, Hallmark (and in some respects society) understands disability as the same as being sick. Are you sick, yes well here are my best wishes to get well soon. Sick is often thought of as temporary, that’s why we give “get well soon” cards and presents. They acknowledge the temporary nature of being sick. The trouble is, disability should probably be thought of as being on the same plane as sick, not the symptom or result of.

Thanks to Hallmark, society has never had develop of true definition for disability which means it has never had to fully understand the disability story. Contrary to the fancy words on a card, expressing sympathy for others is not the same as understanding. We love the phrase “walking in someone else’s shoe” but we don’t actually like to do it unless absolutely necessary. Thanks to epatient advocacy and conferences like Stanford University’s Medicine #Medx, patients are finally being put front and center. It is now time to start understanding the disability story.

Ultimately, I think the main reason I dislike Hallmark so much is that it is generally accepted that buying that $1.78 card is a sign of offering up vulnerability to a fellow human being when it really isn’t. In my weird brain, offering to buy someone toilet paper is a greater expression of vulnerability than buying a Hallmark card is. Society can’t hate disability; until recently it has never been expected to be vulnerable to a human who is disabled. No disabled story can be fully understood until some level of vulnerability is reciprocated by society, which we need to start demanding. After all, being disabled is being vulnerable.

Active listening requires all parties to be willing to be vulnerable with each other otherwise it is just a casual conversation at best by one party to others. The question is, how might we teach society to be more vulnerable to disability in order to actively listen understand the disabled story. Society doesn’t hate disability, it nothinginess disability. However, it will hate disability if we don’t start using more human centered language and less accusatory terms. We need to fill the void of nothinginess with our patient stories so Hallmark can’t with their idyllic Christmas tree parking lot fantasy love stories.