By: Christina Coates

July is Disability Pride Month. I did not know that July was Disability Pride Month until I was told by Erin Loughren on the first day of July. A question that I keep seeing and hearing in my newer circle of Rare Disease Community is “What does ‘Disability’ mean to you?” It seems like an easy question to answer. However, I have been pondering that very question for the last few weeks. You see, in just 11 days from now, I will be marking my official one year anniversary of receiving the diagnosis of Hypertrophic Olivary Degeneration.

It seems to be human nature to want to list all of the things that disability has taken from us. Conversely, I have been thinking of all of the things that my new found disabilities have given to me. First and foremost, HOD has given me a place in a beautiful community of people. People who share my diagnosis, people who love people with my diagnosis, people with other rare diseases, physicians who truly care about me and my new community. My life before HOD was consistent with the typical American life. I worked too much, I ran errands, I made dinner for my family, I exercised, I cared about things that hold no meaning for me anymore. My life just one year later is completely different. I used to hide behind a tall wall and never share my vulnerability with anyone. I was afraid of people I didn’t know. I didn’t want to meet new people. I just wanted to make sure that I got enough protein, worked out enough, was thin enough, was successful in corporate America, worked more than anyone else, held no space for dumb questions or people that I deemed too lazy, give the impression of the perfect wife, mother, employee, etc.

Disability has taught me that success isn’t the size of my home or bank account. Success is being able to make a meal for my family. Success is walking without my rollator. Success is befriending someone who is down and out. Success is being a beacon of hope. I have learned to love and celebrate my small victories, instead of chastising myself for not doing things perfectly. I have learned that accepting who I am at any given moment allows me to also love others where ever they are at in their own journeys without pity or judgement. I have learned that I had a lot of preconceived judgments about people with disabilities, and I have addressed those prejudices and wrote a new story.

Disability has shown me that, by and large, inclusion is not something that we as humans are very good at. If you don’t agree with that, I would encourage you to just observe an American Airport. At each gate, there is a row of chairs reserved for handicapped folks. If you pay close attention, you will see that folks who have no need to use those seats will eventually take up all of the accessible seating. They will even use some of those seats for their carry on luggage.

When I was using a rollator to help me walk, I happened to take a flight to visit with our oldest daughter. I saw people looking me up and down and I could see the scorn on their faces. Even as I struggle to walk, folks didn’t think that I looked ‘disabled enough’. When I went to use the restroom, a person zoomed past me to snag the handicapped stall, almost knocking me over in pursuit of the roomiest stall. I waited for her to finish her business, so that I could carefully get into the stall to relieve my bladder, completely deflated and ashamed. I know now that I was not the party that should feel shame in that situation. As I headed back to the gate to await boarding, I found that a man had assumed my seat in the accessible row, and took the seat next to him for his computer bag and back pack. Luckily, my husband had saved the seat next to him for me. It was at this time that I realized that I had been guilty of this behavior before I acquired this new lesion on my Medulla. I allowed waves of regret and shame to wash over me, and I sat with these feelings in full force. I didn’t try to justify my way out of them, or numb the feelings, or stuff the feelings. I then allowed myself to feel gratitude for my disabilities, because now I could have true empathy and not sympathy or prejudice.

My disabilities have helped me to recognize which relationships are healthy and which are not. I have learned that there were people in my life who didn’t truly care about me deep in their souls. I have released myself from keeping people in my circle because I was supposed to, or I felt expected to. Instead, I decided to focus my most precious resources (time and energy) into people who truly love me exactly for who I am. People who didn’t manage their relationship with me via a calendar, contacting me out of obligation and not out of love or for a true wanting to know how I really am and not just my canned “I’m doing good” standard answer. I am all in on people who tell me that they don’t believe that answer, and ask me for real answers. I have people in my life now who realize that I have become a master of shifting the conversation away from me and focusing on them. I believe I became a master of conversation shifting because I never felt or believed that anyone really actually wanted to know anything about me, but rather just wanted to use my services as a listening ear and a sympathetic agreement of their pains. I surround myself with people who not only want the truth about me, but also share the truth about them with me. Authentic relationships are one of the best gifts that my disability has given to me. How could I be upset or at odds with my disabilities, when they have granted me this new, beautiful life? My life is so much more rich now.

Disability has, no doubt, also taken a plethora of things from me. I am not perfect, and I struggle almost every day, even if only for a fleeting moment, pining for my old life. I get angry when I am infantilized for getting words out verbally that I struggle with. I get scared about what my future looks like. I am happy to report though, more often than not, I celebrate. I celebrate my future. I celebrate my relationships. I celebrate my new found patience and the new tools I am learning to use to help me continue in my work. I celebrate the opportunity I have to serve the HOD community, our caregivers, and our families. I celebrate that, even though I have lost so much, I now can offer hope to a small but mighty community. I can still be exceptional, it is just not in the way that I envisioned 10 years ago.

The Colors of the Disability Pride Flag are symbolic. Black represents the disabled population who has lost their lives to not only their disabilities, but also negligence, suicide, and eugenics. Formerly, the stripes were in a zig zag pattern, but was recently changed to stripes as the zig zigs were seizure inducing (Thank you @Effie Parks for educating me ). The zig zags were meant to represent the non-lateral lives that many of the disability community must lead to survive. Blue represents Mental Illness, Yellow Represents cognitive and Intellectual disabilities. Green represents sensory perception disabilities. Red represents physical disabilities. It is estimated that 15% of the world’s population experience some form of disability. UPDATED 7.20.22 To include flag depiction with muted colors