For the record, I’m a person with a disability, not an unable person
I have cystic fibrosis, but I’m a person — and I belong here
As a person with a disability, I’ve been perceived as different and treated that way. This treatment has taken various forms during the seasons of my life, depending on when my disability was visible. I’ve been misunderstood, misrepresented, and mistreated in all kinds of arenas, and I want to set the record straight here: Just because I have a disability doesn’t make me unable to be a human being.
The disparities between how people are treated in the disabled and able-bodied communities has been well documented. I’ve often been misread by others because of my appearance or need for medical devices. Life with cystic fibrosis (CF) and a double-lung transplant is typically invisible, but when it isn’t, I’ve been treated unfairly. Some people have assumed that I’m not capable of activities because of my disability, which couldn’t be further from the truth.
I got kicked out of a yoga studio one time because I was on oxygen. The studio staff were uncomfortable with my health and refused to accept that I knew my body better than they did. Just because I needed oxygen didn’t mean I wasn’t able to do yoga in the way I was able.
I’ve written about the pain of getting fired for being sick. At the time, I was too sick to fight it. I was also incredibly embarrassed that I was let go and felt responsible, even though the circumstances around it were out of my control. My shame runs deep when I’m seen as being less than an able-bodied person.
When I’ve been oxygen-dependent because of my lungs failing, or when I’ve worn a mask (before it was cool) to protect my health, I’ve been ignored or talked around rather than spoken to directly. I’ve been discredited solely because I have a disability and assumed to be lazy, unreliable, or operating at a deficit.
See the value I bring
These are just a few examples, but what hurts the most are the assumptions made when people don’t talk to me. Passing judgment based on one’s own skewed perception, experiences (or lack thereof), and limited viewpoints is never helpful.
None of us should make assumptions about others when we have no idea what their life stories are. Looks are deceiving and don’t say anything about character, abilities, or value. The most important qualities a person possesses go far beyond their physical appearance.
Disability can no longer be equated with a disadvantage. It’s so vital that the worth of people with a disability be recognized.
For all the hurt I’ve endured from being treated differently, so many more people see me for who I am and the value I bring. Through trial and error, I’ve learned that those who reject or judge me based on my disability aren’t people that I want to be around anyway. I’m done trying to prove my abilities to those who refuse to see them.
Instead, my focus is set on those who encourage me to be the exact person I’m created to be, without hiding the disability that’s so much a part of what makes me who I am today.
It’s no longer up to me to convince others that I’m able. I’m showing up authentically as my whole self, unapologetically. I walk in confidence knowing that all I bring to the table is valuable for the mere fact that I’m a person, and I belong here. I hope you know that about yourself, too.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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