I was born with a disability. Yet, up until about one year ago, I never used the word “disabled” to describe myself.
My cranio-facial syndrome and hearing loss were simply things that made me different and things that I tried to “fix” through an exhausting mix of surgeries, hearing aids, long hair and strategic positioning of my face when in social situations.
For the first few years of my life, my disability took center stage. I had a tracheostomy and feeding tube until I was 2 years old, I communicated primarily through sign language, and I was fitted for my first bone-conduction hearing aid at just 6 weeks old.
When it was time for me to start preschool, all of the experts in my life — doctors, speech and language therapists, audiologists, educators, etc. — recommended that because of my disability, I should attend a special education preschool.
So I did. For three days.
Thankfully, due to my not liking the preschool and my parents knowing that my hearing loss and speech delay should not exclude me from mainstream education, I ended up transferring to the same preschool my older brother, who does not have a disability, attended. And I loved it.
Then came time for elementary school. Again, there were people who thought I should be kept separate from my peers due to my disability. I had an Individualized Education Plan (IEP) and, while I did get to be in a mainstream classroom, I was frequently removed from it to meet with a speech and language therapist or other professionals.
Looking back, I understand why this happened. But at the time, I absolutely hated it. I hated feeling separated from my friends, and I hated feeling like I was missing what everyone else in my class was learning.
Working harder to fit in
It was around this age when I began to feel deep shame about having a disability. I saw the correlation between adults talking about my disability and me being treated differently. I know now this is how ableism presents — people with disabilities are not given the same opportunities as people without disabilities.
I felt like I had to make a choice to either allow my disability to be present and receive additional support, or hide my disability as best I could so that I could have a chance to create the life I wanted.
Eventually, I asked to not have an IEP anymore. I stopped asking for accommodations and support, and I started working harder to fit in.
I have been thinking a lot lately about how much energy I have expended over the past 30 years hiding myself, while also trying to convince people that I am worthy of equity and inclusion.
I remember my secret walks to the bathroom in school to change my hearing aid battery, making sure no one saw me. I remember being terrified when a teacher gave us assigned seats, and I was put in the back row, making it even harder for me to hear. I remember when a boy on the bus told me I breathed too loudly, and even though I knew it was because I have a restricted airway and rely on breathing through my mouth, I started sitting in class with my sweatshirt hoodie, arm or hand covering my mouth, making it hot and difficult to breathe.
Even in the workplace, I have sat in many open-concept environments, trying to discern where sounds were coming from or focus on my work amid echoey background noise.
Yet I never made a fuss. I just tried that much harder to hear and exist and learn and succeed and make it to the end of the day when I could go home and feel safe. It makes me sad that I felt like I had to mask and armor up in order to be allowed space in a room, let alone a seat at the proverbial table.
Was it really inclusion if, in order for me to be there, I had to abandon a core part of my identity?
July is Disability Pride Month, which commemorates the passing of the landmark Americans with Disabilities Act. When I first learned about this celebration, it took my breath away. It has been the most radical act of self-love to begin dismantling my internalized ableism and finally start to embrace all parts of myself.
I am new to the Disability Pride movement, and I don’t know what this new way of being will be like moving forward. I am tired of masking and spending so much energy pretending not to have a disability.
I am excited to settle into my whole self, invite my disability along for all of life’s moments and see what I can do with this new sense of inner belonging and abundance of extra energy.
Megan Brodie is a social worker in Michigan.
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