Content Warning: This essay discusses personal health challenges, including physical disabilities, mental health issues, and gender dysphoria. If these topics might be triggering for you, please proceed with caution.
Disability Pride Month is an annual global celebration that takes place every July. It’s a time to honor the rich diversity and unique experiences of people with disabilities. This month-long event began in the United States to commemorate the passing of the landmark Americans with Disabilities Act (ADA) in July 1990.
The History of Disability Pride Month
Disability Pride Month traces its roots back to March 12, 1990. On this day, over 1,000 people marched from the White House to the U.S. Capitol. They demanded that Congress pass the ADA. This act of civil disobedience, known as the Capitol Crawl, saw activists demonstrate the inaccessibility of public spaces. They did this by leaving their wheelchairs or setting aside their mobility aids and crawling up the Capitol steps.
On July 26, 1990, President George H. W. Bush signed the ADA into law. Each July, we celebrate Disability Pride Month to commemorate this historic moment. The first official celebration took place in July 2015, marking the 25th anniversary of the ADA.
The Significance of Disability Pride Month
Disability Pride Month is about more than just remembering the past. It’s about celebrating the present and advocating for a better future. It’s a time to celebrate people with disabilities, their identities, their culture, and their contributions to society. The aim is to change the way people think about and define disability, to end the stigma of disability, and to promote the belief that disability is a natural part of human diversity.
Unveiling My Personal Health Journey
Life's fabric is woven from diverse experiences. My narrative is a dynamic mix of athletic triumphs and health challenges. As a child, I reveled in the world of sports and competition, cherishing an active lifestyle. However, my health began to decline when I was around 15.
A significant turning point occurred the summer before my freshman year of high school. During a basketball tournament, a collision between my tibia and femur during a jump stop resulted in a severe right knee injury that required surgical repair. This incident abruptly ended my sports activities. The path to recovery was long and challenging. After six months of intensive rehabilitation, I managed to return to the softball field. However, my journey with injuries was far from over. I injured my left knee, tearing all the ligaments, which necessitated another surgery.
In my quest to regain my athletic life, I began experiencing constant pain in my hips, lower back, and SI joints. Despite numerous physical therapy sessions, the cause of my pain remained elusive. I sought answers from various specialists, but one of them dismissed my symptoms due to my young age. This dismissal left me feeling invalidated as if my pain wasn’t real, and sowed seeds of doubt among my friends and family.
In my pursuit of relief, I traveled to Niagara, Wisconsin for hip injections, but the procedure was challenging. I was referred to the Mayo Clinic right away. The consultation at the Mayo Clinic led to a diagnosis: Bilateral Hip Dysplasia and Acetabular Retroversion. These conditions mean that my hip joint didn’t develop properly, causing my hips to be loose in the socket and damaging my hip labrums with each step.
This diagnosis marked the onset of a series of surgeries, and the possibility of future hip replacements is a reality I face. During these physical trials, I was also diagnosed with Fibromyalgia, an undifferentiated connective tissue disease, and NASH (non-alcoholic steatohepatitis).
Fibromyalgia is a chronic condition characterized by widespread pain and fatigue. Undifferentiated connective tissue disease (UCTD) is a systemic autoimmune condition that does not meet the diagnostic criteria for any specific connective tissue disease. This condition is often very difficult to diagnose due to multiple symptoms throughout the body. NASH is a form of nonalcoholic fatty liver disease (NAFLD), which is either nonalcoholic fatty liver (NAFL) or nonalcoholic steatohepatitis (NASH).
Late last year, I was also diagnosed with secondary polycythemia, a rare condition where the body produces an excess amount of red blood cells, causing the blood to thicken. To manage this condition and relieve some of the symptoms, I started undergoing therapeutic phlebotomy, a medical procedure that involves removing a certain amount of blood from the body.
In addition to these physical health challenges, I have also grappled with gender dysphoria as a transgender individual. This struggle has added significant stress and led to crippling anxiety and depression. The journey towards self-acceptance and societal acceptance is a challenging one, but it is a part of my story that I continue to navigate with courage and resilience. Gender dysphoria is a condition where a person experiences discomfort or distress because there’s a mismatch between their biological sex and gender identity.
Now, at the age of 30, I’m navigating a maze of health issues. These include severe Atopic Dermatitis, a common skin condition causing dry, itchy skin patches, for which I have to take an injection twice a month. I also had a severe eye infection, specifically viral conjunctivitis, at the start of the new year that almost led to hospitalization. In addition, I have allergies to our beloved dogs, for which I now have to go through immunotherapy every week.
My asthma has resurfaced, requiring regular use of an inhaler. I’m also dealing with strange sensations in my head, episodes that distort my vision and balance. Initially, these episodes were thought to be seizures, but after several tests and a trip to the neurologist, they believe I have Meniere’s disease, an inner ear problem that can cause dizzy spells and hearing loss. I will have to travel to see a specialist for this condition. Due to the potential dangers of driving with Meniere’s disease, I could also lose my driver’s license.
In my daily life, I navigate the complexities of ADHD, CPTSD, and dyslexia. ADHD, or Attention-Deficit/Hyperactivity Disorder, is a neurodevelopmental disorder that can make it challenging for me to manage time, stay organized, and focus on details. It can also affect my sleep and eating habits, leading to feelings of frustration and underachievement. On top of that, I grapple with Complex Post-Traumatic Stress Disorder (CPTSD), a condition that stems from chronic trauma and manifests as anxiety, flashbacks, nightmares, and difficulties in maintaining relationships. It can also trigger issues with self-worth and lead to self-sabotaging behavior. Dyslexia, a learning disorder that affects my ability to read and write, adds another layer of challenge. It can cause problems with reading, writing, spelling, and organization, and can affect any aspect of life that requires written communication. However, I’ve found that using AI technology, like text-to-speech and speech-to-text tools, has been incredibly helpful in managing my dyslexia. These tools help me express my thoughts and ideas more effectively, making writing a less daunting task. The interplay of these conditions can compound the challenges I face, but with the right support, accommodations, and the use of AI technology, I continue to navigate through life’s complexities.
The struggle has been relentless, and I often feel stigmatized for being disabled. This has led to the loss of many friends and a significant amount of confidence. I now grapple with mental health issues in addition to physical ones, which is exhausting.
I have become inactive due to my physical limitations, accessibility issues, and the fear of being perceived as burdensome. Despite having a handicap placard, I sometimes hesitate to use it, fearing judgment from those who think I am too young to need it. Yet, I continue to navigate these challenges, holding my head high, refusing to give up, and taking each day one step at a time.
Disability Pride Month holds deep significance for me. It acknowledges my battles and reassures me that I am not a burden. It serves as a reminder that I am not alone and that others are fighting their own daily battles. While I am grateful for the abilities I still possess, I stand in solidarity with my fellow disabled friends, affirming that they, too, are not alone in their journey.
Conclusion
Disability Pride Month serves as a reminder that disability is not a burden or a disease, but a natural and beautiful part of human diversity. It’s a time for people with disabilities to come together, celebrate their identities, and raise awareness of the challenges they face every day in being treated equally. As we celebrate Disability Pride Month, let us remember to honor each person’s uniqueness and continue to strive for a more inclusive and accepting world. This year’s theme, “We Want a Life Like Yours”, underscores the shared human experience and the universal desire for a life filled with dignity, choice, and belonging. It is a call to action for all of us to work towards a world where every individual, regardless of their abilities, can lead a life that mirrors our own.
Feedback and Shared Stories
I welcome any feedback on my story and would love to hear from others who are willing to share their own experiences. Your stories matter, and by sharing them, we can foster understanding, empathy, and acceptance. Together, we can make a difference.
To Learn More about Disability Pride Month and how to celebrate:
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