I have come to the realization that I am at a place where I can be honest about my disability. However, this is easier said than done. Not only because being honest about social and perceptive barriers is emotionally and psychologically painful; it is also extremely difficult to openly state that I am happy with my life.
For some individuals who might read this, especially my family, this may be extremely confusing. Let me explain.
Invisibility syndrome can be defined as the internalized emphasis of negative perceptions and or stereotypes at the exclusion of positive attributes (Carr and West, 2013. pp. 121). In the case of living with a disability, this means I have internalized the concept of being a burden on my family, broken and unloveable (Ingham, 2018). On the other hand, I have excluded my perseverance, kindness, and friendly personality from the realm of my perceptions since I became a teenager. Fortunately, this is changing every day as I am choosing to be more visible and to push past the internalized shaming from society that, in many instances, was never meant in the first place.
To give a real-life example, instead of thinking I need to find a way to make myself participate in a treatment to make me physically able to find love or reduce family stress, I have decided to love myself first and take on more of the responsibilities that come with extra appointments and payments (although it has been difficult to convince the ones I love of this second aspect so far.)
Even with this sense of empowerment, I can honestly, say this decision to embrace my physical differences and become more socially visible has given me even more compassion for those with alternative orientations. For, despite being privileged as a white cisgender Christian female in a feminist era, being honest about my contentment with my body terrifies me. My question is why?
Why do I feel so selfish and a spoiled brat for making this decision even though my parents love me? Maybe because it’s a lot of work to make sure I get what I need. As I said, because of the extra appointments and assistance required.
Still, why? Why do I feel stupid for being optimistic and believing in possibility?
It’s probably because people and policy say no—a lot.
Again though, why?
To be clear, I’m not going against treatments if that feels right for a person. My problem is why can’t we live in a world where the medical option and disability acceptance by using adaptive equipment can coexist if it feels right, as it does for me.
I’m asking for a third option. So that people with disabilities, “are not judged by their [level of ability] but by the content of their character” (RARE FACTS, 2017). If I can exemplify this acceptance in my own life, I choose to buckle in.