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The Unexpected Lessons I've Learned Because of My Disability

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Just over a decade ago, after being hospitalized with brainstem encephalitis, I emerged from a medically induced coma with an acquired brain injury and multiple physical impairments. Like many people who become disabled as an adult, I mourned my loss of ability and independence, and wept at the unfairness of my fate. I felt frustrated with my impairments and guilty because I believed I was a burden on my loved ones. Convinced that my life would never be the same again, I resigned myself to a fruitless and miserable future.

It’s true that my life was never the same again — but not in the ways I expected. As the years marched on, I adapted to my impairments and learned to navigate through the world in a wheelchair. Along the way, I developed some valuable skills and attitudes, and grew in ways I never really appreciated until recently.

Patience and Tolerance

I had never been a patient person. As a child, I had tantrums, slammed doors and threw things when I became frustrated. As a teenager, I was quick to pass judgment on or dismiss people I didn’t understand or relate to. As an adult, I hated any situation where I had to wait or was inconvenienced, and was often short-tempered and unkind to those “in my way.” When I fell ill and became dependent on others for my care, it was excruciating! I had no control over my environment, the people chosen to care for me, or when and how that care took place. I was completely at the mercy of someone else’s time schedule, and the waiting was often maddening. Each medical professional came with their own personality, some of which I clashed with, but had no choice but to tolerate. Coupled with emotional lability from the brain injury, my impatience was displayed in disruptive and inappropriate ways that upset everyone around me, including myself.

As I moved from the hospital to rehab, to group home, and on to independent living, the frequent moments of waiting and tolerating continued. I have discovered that living with a disability in this world requires a lot of waiting (for care, for funding, for equipment, for accessibility, even for simple acknowledgment of my very presence!). As I have learned to navigate life as a disabled person over the years, my patience has increased exponentially. As a result, I am far more calm and kind to others, which improves my own happiness and sense of peace.

I have also learned that living with a disability in this world often requires tolerance. I encounter ableism on a daily basis, in the form of accessibility issues, discrimination, micro-aggressions, condescension, and infantilizing. If I called it out every time, I would have no time or energy to live my life as I would like. So, I frequently tolerate these annoying moments, not because I should or I must, but because it’s simply not worth the energy. As frustrating as this can be, it has taught me how to pick my battles and not sweat the small stuff, so I may preserve my time and energy for things that are important to me.

Communication and Cooperation

I always felt I had excellent communication skills. I spoke and wrote clearly, and was able to explain things in a way anyone could understand. I listened to what was said before responding and paraphrased if it felt unclear. I was able to clarify a complicated concept or broaden a discussion to a larger picture. But there is nothing that will challenge one’s communication skills more than trying to instruct a stranger in providing the help one requires! I can’t tell you how many times I’ve sat in my wheelchair in a grocery store, trying to explain to someone which item I need from a high shelf. As they pointed to this item or that one, I called out directions: “The shelf above that… the one with the green label… next to that… left… no, that’s right… left… no, the green one, please.” The longer it continued, the louder and more strident I became, and the more nervous and embarrassed they became, making everyone feel awkward.

There are many areas in my life where communicating clearly to have my needs met is necessary, such as bathing and dressing, locating stored items, retrieving unreachable items etc. There are also many times where I must be able to explain my needs in order to receive funding, equipment, treatment etc. Lack of clarity or errors in paperwork can result in long delays in an already time-consuming procedure, so getting it right the first time is crucial. Since becoming disabled, I have learned to clearly and calmly explain my needs, give instructions, and adapt to other people’s communication abilities.

Awareness and Inclusion

I am a well-educated, straight, cisgender, white woman from an intact middle-class family, and I was non-disabled for 38 years. I have enjoyed a lot of privilege in my life, and rarely spent a lot of time considering the experiences of marginalized people. When I became disabled, I became acutely aware of how differently I was treated by people, regardless of the fact that the only thing that had changed about me was my physical abilities. I learned about ableism and how it now significantly impacted my quality of life on a systemic level. I began to support disability rights, started my website and Facebook page, and pored over articles and stories about various illnesses and disabilities. I learned about intersectionality and how race, gender, age, etc. play a significant role in systemic discrimination. I learned and grew in leaps and bounds, frequently checking in on my privilege, and welcoming opportunities to expand my perspective. Because of my own personal experiences, I was able to empathize with the experiences of other marginalized groups and now see far beyond the realm of my own existence.

Had it not been for my experiences with trauma, mental illness and disability, I may never have developed these valuable skills, experienced this amazing journey of self-discovery, or learned to view others with a much more kind and inclusive attitude. For that, I am forever grateful.

Getty image by apeyron.

Originally published: July 4, 2021
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