I was born disabled. However, until a year ago, I had not used the word “disabled” to describe myself.
Skull-facial syndrome and hearing loss were the things that made meDifferent And the things I’ve tried to “fix” through a grueling mix of surgeries, hearing aids, long hair, and strategically positioning my face 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, communicated mainly through sign language, and was fitted with my first bone conduction acoustic device at just 6 weeks old.
When it came time to start preschool, all the experts in my life—physicians, speech-language pathologists, audiologists, teachers, etc.—recommended that because of my disability, I should attend preschool for special education.
So I did. for three days.
Fortunately, because I didn’t like school and my parents knew that my poor hearing and speech delays shouldn’t exclude me from regular education, I ended up transferring to the same pre-school for my older brother, who doesn’t have a disability. And I loved him.
Then it was primary school time. Again, there were people who thought I should stay separate from my mates because of my disability. I had an Individualized Education Plan (IEP), and while I was in a regular class, I was often pushed away from it to meet with a speech and language therapist or other professional.
Looking back, I understand why this happened. But at the time, she absolutely hated him. I hated feeling separated from my friends, and I hated feeling like I was missing out on what others in my class were learning.
Work hard to fit in
It was around this age that I began to feel very ashamed of having a disability. I’ve seen the relationship between adults who talk about my disability and I’m treated differently. I now know that this is how ability manifests – people with disabilities are not given the same opportunities as people without disabilities.
I felt that I had to choose between allowing my disability to be present and receiving additional support, or hiding my disability as best I could until I had a chance to create the life I wanted.
In the end, I asked not to have an IEP anymore. I stopped asking for accommodations and support, and started working harder to fit in.
I’ve been thinking a lot lately about how much energy I’ve put in over the past 30 years to hide myself, while also trying to convince people that I deserve fairness and inclusion.
I remember walking secretly to the bathroom at school to change my hearing aid battery, and to make sure no one would see me. I remember being terrified when a teacher gave us assigned seats, and I was put in the back row, which made it more difficult for me to hear. I remember when a boy on the bus told me that I was breathing very loudly, and although I knew it was because my airway was restricted and I depended on breathing through my mouth, I started sitting in class with a heavy sweater or covering my arms or hands making my mouth hot and hard to breathe .
Even in the workplace, I sat in several open concept environments, trying to discern the source of the sounds or focus on my work amid echoing background noise.
However it didn’t make a fuss. I have tried so much more to listen, to be, to learn, to succeed and get to the end of the day where I can go home and feel safe. I am sad because I felt I had to put on a mask and wear armor in order to allow space in the room, let alone sit at the proverbial table.
Was it really an inclusion if, to be there, I had to give up an essential part of my identity?
July is Disability Pride Month, which commemorates the passage of the Americans with Disabilities Act. When I first learned about this celebration, it took my breath away. It was the most radical act of self-love to begin to dismantle my inner capacity and finally begin to embrace all parts of myself.
I’m new to the Disability Pride movement, and I don’t know what this new way of being will be like going forward. I’m tired of hiding the mask and spending so much energy pretending I don’t have a disability.
I’m excited to fully settle into myself, invite my disability throughout life’s moments and see what I can do with this new sense of inner belonging and extra abundance of energy.
Megan Brody is a Michigan social worker.
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