Plagued by Crohn’s Disease, I came face to face with how little the average person cares about other people — especially the ill and disabled.
It’s estimated that approximately 133 million Americans — 45% of the population — have at least one chronic illness.
Chronic illness is defined as an illness that persists for longer than three months by the U.S. National Center for Health Statistics. The CDC goes on to report that half of all adults in the United States have one or more chronic health conditions, and one in four adults had two or more chronic health conditions.
These conditions manifest in a number of tangible though sometimes invisible ways; exhaustion, migraines, fatigue, memory loss, loss of function, and for many people, reduced options and quality of life.
Chronic conditions can be difficult to diagnose, difficult to relate to, and difficult to understand. In fact, they are often misunderstood. The chronically ill are often questioned, undermined, and micromanaged as a result of short-sighted perceptions and stereotypes.
Chronic conditions, such as paraplegia are quite visible while others, like diabetes, are often invisible. Then there are conditions, such as multiple sclerosis, that ride the friction between invisibility and visibility but are no less subject to public opinion and social judiciary on their authenticity. For individuals who live with any of these chronic conditions, our lives and our differences are often stigmatized by those who do not have chronic illnesses.
This stigmatization is characterized by the social processes that produce rejection, exclusion — and blame. Stigmatization is based on ignorance, which produces fear or anxiety or the belief that a chronically ill person is cheating the system and must be held accountable.
Still, for those individuals whose illnesses skirt the border of visibility, there are often repercussions for just living.
Dangers of being chronically ill on social media
Nichol Candar, a realtor with multiple sclerosis, was recently the victim of these assumptions and stigmatizations when she was showing a townhouse to her clients. After she was done, she returned to find her car — rightfully parked in an accessible parking space — with dog feces smeared on it.
Because Nichol’s condition is not immediately apparent, it is believed that an ill-informed neighbor took it upon themselves to act in retribution. In fact, Nichol has often been the victim of public derision when using accessible parking, with strangers questioning her authenticity.
Yet, these misunderstandings are not just a problem for our day-to-day interactions. Even the highest forms of government are making moves to use your social media as a tool to “increase program integrity and expedite the identification of fraud.” The idea is to monitor persons on disability who post suspiciously happy content to their social media who must obviously be abusing the system and are thus not truly disabled.
This ideology undermines the autonomy of disabled persons, dangerously conjuring tired images of welfare queens driving Cadillac’s with expensive accessories and electronics who are using their money to purchase illicit drugs. Interestingly, even this legislation cost more than its weight in efficacy. Only 1 in 800 people tested in Tennesee tested positive, while only 2.6% of applicants tested positive despite its statistic 8% of illegal drug use statewide.
These 12 cases cost the state $30,000 and were ruled unconstitutional in 2013, though not before giving the public permission to micromanage populations at risk and inspiring greater suspicion for people enrolled in assistance programs. In spite of this, it seems as though our governing bodies have not taken this lesson to heart.
It is not the responsibility of persons with illnesses or disabilities to explain themselves. Yet because of the misconceptions associated with illness in general and the growing number of the chronically ill community, awareness and visibility have never been more important.
The relationship between invisibility and visibility, between disclosure and non-disclosure, is poorly understood. Somewhere, at the intersection of public awareness and personal privacy, there is a sweet spot we can leverage our lived experiences to educate the greater public. There is a place where a balance can be found between helping the public understand what is needed and deserved and what is unacceptable.
Most importantly, we can use it to pierce the isolation and loneliness that consumes the chronically ill, paving the way for everyone who comes after us, in an act of solidarity.
Coming face-to-face with an inaccessibile world
At the height of my dissolution at the hands of a severely catabolic body plagued by Crohn’s Disease, I came face to face with how little the average person cares about other people — especially the ill and disabled. Weighing in at 87lbs, hobbling on a cane, or being pushed in a wheelchair, I had no strength to operate on my own. It was then I began to appreciate how different the world for those with mobility issues.
Suddenly, I became hyperaware that most establishments and public spaces were not handicap friendly. What were small steps for me when I was healthy became deathtraps as I struggled with my walking aids. Without a stair rail, they were insurmountable for me.
The absence of ramps of any kind meant that the store I would like to visit became a place I could not go without assistance.
Yet, a ramp or even a slight increase in elevation could pose a serious problem. In fact, I fell victim to one such example in the most literal way possible. While walking into my local grocery store, I stumbled across the slight incline into the threshold and fell flat on my face, earning a concussion.
I did finally achieve remission with the help of in-patient therapy and biologics — after nearly losing my life. I was able to walk again without assistive devices. I was able to put on healthy weight gain.
I was one of the lucky ones.
But I’ve never forgotten the indelible lessons learned.
I carry with me the understanding that so many will never recover like I did and are still trapped in a world built for the able-bodied.
It is both sobering and heartbreaking.
Disabled people must be able to share photos on social media when they feel good (and when they don't!) to add a clearer picture of what their lives look like.
I spent so much of my time mourning the loss of my old life, believing it was permanently lost. What I failed to understand was that the idealization of the able-bodied woman I was, that I perceived as being better than the woman I am now, directly fed into the negative stereotypes that the chronically ill community is plagued by. I was no less valuable and deserving of happiness and fulfillment, in spite of or despite my condition.
My condition is something that happened to me, but it does not define me.
This perceived loss of self can be reinforced by cultural conditioning. It has the potential to reinforce our beliefs about who we are and our place in society.
When I came to learn that who I was as a person was not damaged and was therefore untouched by my condition and its ravages, it was a homecoming.
You could say it was an act of finding myself, as explained by Emily McDowell:
“Finding yourself is actually a return to yourself. An unlearning, an excavation, a remembering of who you were before the world got its hands on you.”
While in my catabolic state, I was outfitted a PICC (peripherally inserted central catheter) line and TPN (total parenteral nutrition) and summarily applied for disability. In the last leg of my recovery, my specialist left the PICC in for a month should I needed it again.
By the time my disability was approved, my condition was such that I was able to work from home — albeit for short periods. I could not accept the offer because I was longer in a position where I was fully dependent on it. And because I could technically work as defined by the narrow scope as defined by Social Security.
But I’ve decided to take this opportunity and experience and use it as an opportunity —for ill and able-bodied people alike.
With the help of the photographers in my life, I was able to model with my PICC as a tool to increase visibility within the chronically ill community — particularly those who have an invisible illness, like me.
I didn’t know it then, but these images would become more than just mere photos. In a society that tells us, we are less than, we are a burden, we must appear waifish and sickly in order to justify any aid we receive, the act of openly loving yourself and leading a joyous life is an act of open rebellion.
Especially now, when the government threatens to surveil our social media as a diagnostic for disability fraud, using our happy moments against us. Because not all disability and illnesses are obvious and even small indicators of such are not always apparent — even to trained eyes.
This is the time to use this dangerous proposition as a teachable moment — and as a spotlight.We can share our photos when we feel good (and when we don’t!) to add a clearer picture of what our lives look like.
Our social media can be used as a tool of integrity and of conscious mindfulness of our experiences in the world.
It can also be used as a tool to preserve the experiences of others who may fall between the cracks.
Preservation is a facet of social memory; it provides a cultural snapshot of what may otherwise be lost to time.
Our lives are complex and beautiful and messy and mundane — they are human. But they are not fraudulent.
Because happiness is not fraudulent.
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