ID: The words New Blog Post in the upper right hand corner. The title Disability Pride Month 2022 above the words "Who becomes disabled?". The background is the new disability pride flag, a grey background with parallel red, yellow, white, blue, and green stripes.
Like many people with chronic illnesses, my health moves in cycles of more and less symptoms. Over the years, I have experienced an increase in symptoms and a decrease in abilities. Personally, the changing nature of my health day to day coupled with the slow decline made it incredibly hard to see that I was disabled. And even harder to pinpoint when and how I had transitioned from able bodied to disabled.
Disability means so many things. Disabilities can be dynamic or unchanging. Disabilities can be due to injury, illness, and/or birth differences. Disabilities can be varied, and affect a person’s movement, mental health, thinking, learning, remembering, communicating, social relationships, vision, and/or hearing. Disabilities can be invisible, progressive, intermittent, and/or genetic. Disability can refer to a legal definition or a medical definition. There is no singular, universal experience of disability. The experience of being disabled is influenced by so many other things, including type of disability, gender, race, sexuality, financial resources, geographical location, etc.
In 2016, I became very ill with a virus. We had just finished moving homes and I was feeling depleted. My immune system was weaker than usual. I just kept getting sicker. I took some time off work to “recover.” But at the end of my time off, I was still very sick. I spent the next few months taking time off to try to regain my health and trying to figure out why I was so sick. This period of time included losing roughly a quarter of my body weight and gaining my Dysautonomia diagnosis. I was missing so much work, it’s hard to remember the amount of times I cut down my workload and how much time I took off work. I continued working whatever amount I could with lots of family support. At this point I couldn’t even think of the word disabled. I would do everything in my power to continue working.
Our culture often projects a rigid binary of disabled and able bodied people. This us vs. them mentality doesn’t allow for the progression of illness or accumulation of injuries; the movement into and out of disability. This type of thinking places disabled people and able bodied people as two distinct groups, instead of two ever changing parts of the same group- humanity. Growing up as an able bodied person immersed in these beliefs, it was hard to see when my symptoms and abilities had tipped into disability. Even as my ability to work diminished, I struggled to understand when and how I had become “d i s a b l e d.” I struggled to overcome the idea that the disability community was an immutable group that I wasn’t a part of. I was part of the able bodied group- I had played sports growing up and enjoyed biking with friends. I could still work a little and I wasn’t using mobility aids. This type of thinking allowed me to pretend I couldn’t be disabled. It encourages able bodied people to pretend that disability could never happen to them.
In 2018, I was dealing with a few physical health issues including a re-tearing of the labrum in my hip, some nerve entrapment, carpal tunnel in my arm and hand, and greater autonomic dysfunction that can often be related, in part, to stress and increased pain. I was also managing the mental health fallout of chronic illness including anxiety, depression, and PTSD related to medical trauma. I was warned at the time, by a close family member that my “bad” days were becoming more frequent and my “good” days weren’t as good. I chose to take these warning signs seriously. I added in a helpful supplement and a new medication. I stopped accepting new students and worked to increase my meditation and exercise.
However, when I realized that my ability to work was still diminishing, I cut my workload by another third and chose to take two weeks off to focus on my health. During those two weeks I focused on rest, exercise, healthy eating, and meditation. Even with those lofty goals I made sure that rest and relaxation were my main priorities. Unfortunately, by the end of the two weeks, I had learned one thing- this was not a passing phase. I tried to return to work unsuccessfully, and had to abruptly step away. At 28, I had to stop working for an undetermined amount of time. There was no acute injury or change in my health, just cumulative decline.
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Merriam Webster defines disability as:
1: a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions
2a (1) : an impairment (such as a chronic medical condition or injury) that prevents someone from engaging in gainful employment.1
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I am disabled. I have had limitations that affect my everyday activities for more than the last five years. I was blessed to be able to make a living wage with reduced hours for a while. I was even lucky enough to continue working when my income wasn’t quite enough to support me thanks to the help of my family. I allowed that ability to earn some money while only working 10 or 20 hours to distance myself from the word disabled. I pushed myself to work whatever amount I could to try to check off the box of gainful employment as if that negated my disability. But that’s not how disability works. I am disabled. That doesn’t mean I will never work or that I will never feel better. But it does mean that my medical condition will continue to limit my ability to participate in typical daily activities. Sometimes that daily activity will be working a job, sometimes it will be so much more than that.
According to the CDC, as of 2018, 1 in 4 American adults has a disability that impacts major life activities. According to the Council for Disability Awareness, every year roughly 5% of Americans in the workforce will experience a short term disability. According to the Integrated Benefits Institute’s 2020 Benchmarking Trends Report, pregnancy, childbirth and puerperium, the period of roughly six weeks post childbirth, ranks fourth for short term disability claims, and eighth for long term disability claims. Disability is a part of the human experience- many people experience disability at some point in their life.
Living with a disability can be challenging. But it is usually my interaction with people who don’t understand disability and an inaccessible world that makes being disabled really difficult. People are often confused by many aspects of disability, whether that is how people could have changing mobility aid needs from day to day, or what a day in my life might look like. This misunderstanding and lack of curiosity about disabled experiences make it very hard for able bodied people to understand the nuance and “onset” of disability. And who becomes disabled? The able bodied. The likelihood of experiencing even short term disability over a lifetime is probably much greater than you think. This Disability Pride Month, I encourage everyone to work to better understand the experiences of those within the disability community.
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