I’m proud of how my disability advocacy has grown over time

Living with a rare disease isn’t necessarily something I’m proud of. However, I do take great pride in standing up for the rights of those of us who live with disabilities. Speaking out through my column is one way I can advocate.

Disabilities are much more complex than many people imagine. They can be cognitive, developmental, intellectual, mental, physical, sensory, or a combination of these. Each may involve different needs and accommodations.

Over the years, our family has learned to accommodate multiple diagnoses and disabilities. My oldest son, Dorian, was the first in our family diagnosed with autism spectrum disorder, at a time when there were few accommodations in place. I learned to speak up on his behalf long before others in our family, including myself, were diagnosed with autism and other health conditions.

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Our rare disease journey began with our adopted daughter, Leah. Her diagnoses began with Beals-Hecht syndrome in 2015, followed by idiopathic intracranial hypertension without papilledema and familial cold autoinflammatory syndrome type 2 in 2018, and hereditary angioedema (HAE) in 2019. Since then, she has added early Sjögren’s disease and Charcot-Marie-Tooth disease to the list.

I’ve also been diagnosed with multiple conditions, including Lyme disease in 2005 and HAE in 2023. But despite my personal experience with disability, I wasn’t savvy about all the potential challenges. Leah’s daily needs vary depending on her symptom flares, so her accommodations do, too. Due to increased mobility issues, Leah now uses a wheelchair most of the time outside the home. Therefore, I have become more aware of accessibility, or the lack thereof, in public spaces.

While awareness days and my family’s experiences have allowed me to learn more about specific diseases, I am sorry to say that, until this year, I was completely unaware that July is Disability Pride Month. Many thanks to Leah, who brought it to my attention.

Did you know that there is even a Disability Pride flag? I was so excited to learn this that I bought one to put on display.

This month, I’m reflecting on my journey toward acknowledging and embracing the reality of my own disabilities, and how I’ve learned to speak up, not only for others, but for myself.

I have gone from being a concerned mom to a spokesperson and advocate, and now I am proud to be a disability warrior. I hope you all enjoy Disability Pride Month and feel seen and accommodated year-round.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.