We Need to Embrace the Uncomfortable and Talk About Disability

I was born with spina bifida/hydrocephalus. I grew up in a school of 300 children, only two of whom had disabilities in mainstream classrooms, one being myself. There was also no disability representation to be seen in any medium.

I was once asked, “When was the first time you realized you were different?” It was when I started elementary school, and I quickly learned I was not like the other children physically and mentally. I was bullied in elementary school for having to wear AFOs as a walking aid as well as for being “slow” to learn in class. We were taught that when you are being bullied by a peer, you are to tell an administrative person (i.e., teachers, principal, school employee). The few times I approached my principal, he defended the bullies simply because their parents were a part of funding the school I attended.

As a child, what do you do when the people who are supposed to be in your corner aren’t? The trauma this presented forced me to retreat into hiding my disability the best I could. When I started school in a new city, I told no one about my disability. This caused more harm than good, as I became an extremely anxious individual, hypervigilant and suicidal. I was unable to get the help I needed because that would mean I would need to admit my reality out loud.

I was able to hide my disability until I was about 30 years old, but I realized this was preventing me from living as my true self. I made the choice to hide my disability because I didn’t think I had any other option at the time. I had a lack of resources and support. It made me feel isolated and fearful of society. At 30 years old, I was planning not to live another day; even with a room full of people who loved me, I felt alone. The one thing that stopped me was realizing all the things I would miss in the future if I wasn’t around. I needed to live, I wanted to live. When I started to face my reality, I became more liberated because I was living my life authentically.

Growing up, I relied heavily on the online community as a way of human connection as I was afraid of being criticized by others. The screen kept me safe, guarded, and less vulnerable. It was only natural that I would use the online community (Facebook) to flip my narrative. I decided that despite the negative comments I received as a child it was no longer going to trigger me. I posted a photo of myself on my Facebook, wearing a pair of shorts exposing the AFOs that were once weaponized against me in others’ bullying tactics. The outpouring of support that I received was overwhelming. This in part tore down the walls in which I was hiding behind much of my life and opened new opportunities that I once was fearful of.

I learned many lessons through this experience. Others’ opinions of me no longer faze me because I realized that their opinions are based on their own thoughts, not my own. I now use my voice to express my needs in areas such as healthcare, employment, and education, rather than be stigmatized. There are other people who can relate to your situation; there is in fact community. I began to take care of myself better and had mental clarity. I felt united rather than the isolation and confusion I originally felt. I have realized my self-worth and have accepted myself. With this new realization, I have come to not accept less than what I deserve as an individual.

In 2022, the stigma of disability still exists. We are still very much underrepresented in media, and still frowned upon in pursuing relationships. We are forced to live below the poverty line, and fight for our basic needs both in employment and health care. We are still looked at as less than and aren’t included in conversations involving our overall wellbeing. Due to societal misunderstandings, the disability community has historically been bullied and experienced a never-ending barrage of ableism. We should be able to not fight alone and have those higher in power on our side.

All these situations can cause one to lose their self-worth as an important part of society. We as a society need to do better, be better. Every human being should be treated equally, no matter race, gender, disability, or socioeconomic status. Never judge a book by its cover. Everyone can succeed when given the right tools and the opportunity to shine. You can write your own narrative, so let us act on changing it now. Let us be rid of stigma, bullying, and ableism in our society. The lack of education surrounding sexual health specifically and disability is still very much taboo and that leads us to raise another generation of children who will grow up to become adults who believe they are unlovable and lack self-esteem and confidence. We need to embrace the uncomfortable and have these conversations to educate society as a whole.