I mean, the title says it all, really.
Let me detail a timeline of events of my life to put this blog into better context:
1997: I was born with cystic fibrosis.
High school (2012-2016): My CF progressively got worse. That is just the nature of the disease. I was hospitalized numerous times, taking me out of school, forcing me to drop out of high school activities such as school plays and speech, and missing events such as prom and my cousin's confirmation.
High school through most of college (2012-2019): I needed to wake up an hour earlier than my peers to do a vest treatment with nebulizers, as well as throw up and dry heave, due to the nature of my deteriorating lungs not cooperating with me in the mornings. I'd sit over buckets for 20 minutes every morning, waiting for the coughing and vomiting to stop.
I also had to find at least half an hour in the middle of the day to do another treatment to make sure my lungs stayed clear for the whole day.
Early college (2016-2018): The realization started setting in that I need to find a job that is flexible with my disease, where I can work part time from home, or I'd have to find somewhere where I could have a private room to do treatments, or not work full time, or have some sort of accommodation that would have been very hard to get, especially coming right out of college with nothing to prove I am a competent and skilled worker in my field.
October 2019: Trikafta was approved. While I knew it was a good drug and was promising, I didn't know exactly what that meant for me.
November 22, 2019: I started Trikafta. In the weeks and months following, I learned what exactly it meant for me. My coughing and mucus production came to a halt. My energy levels soared, I was able to run and exercise more than I had ever before, I could start breathing more deeply than I thought possible, I was able to drop from doing three vest treatments a day to two (with talks of being able to drop down even more in the future), and life got infinitely better, with my CF just a second thought rather than the thing that was constantly on my mind.
2020: COVID-19 hit. People had to work from home. Everyone did! (I mean, almost everyone.) The world adapted to allow people to work from home without even thinking about it.
August 2020: I was able to enter the workforce, working almost 100% from home.
So now for the actual blog.
I lucked out with Trikafta. If that life-changing medicine hadn't been approved, I would have still had to look for a job that was flexible and able to be done from home. I would have been in the "Early college (2016-2018)" dilemma when I graduated college this May. I was worried about working because I coughed all day everyday, and I needed to do a treatment in the middle of the day. I knew that if I worked in an office, my coughing would be distracting for others and embarrassing for myself. I wasn't sure if it would be possible for me to do a treatment in the middle of the day. Not at my desk, certainly, which would've meant having to get a special room in the office for me to step out to do a treatment. And would that mean having to do a treatment over my lunch break?
These were the questions I pondered until I started Trikafta, and really it was once COVID hit that my questions were answered and my worries were relieved.
People who had disabilities without life-saving medicine, people with depression, anxiety, cancers, autism, and so many other disabilities, were still in that work-from-home dilemma, and COVID has really been a blessing in disguise.
It wasn't until COVID struck that the world realized how many people could work from home and do their jobs just as well (people can even start their jobs remotely and still be successful!). The world operated in an ablest way. The world wasn't able to see my perspective, or the perspective of other people with disabilities. (That's what privilege is, by the way. This blog is about having privilege, and it's a real thing. No further questions. Keep reading.)
We should have been working from home a long time ago. Apart from the capitalism aspects of it (which is another conversation for another day), the ableism aspects of working from home, or changing the work week from 5 day 9-5 workweek is something we should have considered not only for those of us with disabilities but for everyone.
The only thing is, we started working from home when it affected everyone. Rarely were exceptions made before COVID. Working from home for someone with a disability, someone like myself or someone with extreme anxiety, is crucial. I know of people who cannot operate effectively in an office for 40 hours a week due to their mental illnesses. They are competent and smart but in order to work from home they had to prove themselves worthy. I couldn't work from home fresh out of college; I would have had to prove that I was competent enough to do the work before I could take it home. In fact, when I got my job out of school, I had to be in the office three days a week for the first two months while I was training. I still had to prove myself, and as a person with an underlying health condition during a pandemic, that was scary!
Luckily for me, Trikafta allowed me to do that. Others, who didn't receive a life-changing medicine, aren't so lucky. For many, it's work from home or don't work at all. And the world didn't operate like that before COVID, and it still doesn't totally work that way. But it needs to.
Everyone deserves to work a full-time job if they want. Opportunities shouldn't be limited to someone because they have a disability. We cannot judge people's worth and value and give them fewer opportunities based on their abilities or disabilities. We need to be adaptable. That means helping people get a home office set up, giving them a computer, monitor, mouse, and even an office chair that allows them to be comfortable and able to work.
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| My home office setup. Complete with my vest treatment and medicines! |
This goes for working parents, too, especially working mothers who need to choose between giving up much-needed recovery and bonding time after having a child and keeping their job. Life isn't all about work, and yet we've made it about that. If you can't work, that's your fault and you need to figure it out.
I can go on, going into welfare and the "free handouts" people "feel so entitled to" because they're "lazy and unmotivated," but I won't. But please, if you'd like to discuss that, I am always available to talk.
I hope after the pandemic is over (you know, in five years from now), employers maintain this flexibility and allow people to work from home more than they have already. I hope people can start jobs from home without having to prove they deserve to work from home. If I didn't have Trikafta, I would have been extremely worried about finding a job. The pandemic, though, is what really helped me find a job and work from home while maintaining a lung disease. People with disabilities want to work, the world just has to let them.
