March is Women’s History Month, but did you know that is also Cerebral Palsy Awareness Month? I didn’t until I started my research for this blog. Since Cerebral Palsy impacts my life in such a big way, every Cerebral Palsy Awareness Month, I want to create content for you that shares a little more about my life living with or about Cerebral Palsy itself. However I struggled to come up with something to kick off the month, then I started to think maybe that’s the point or at least what I should write about, so I’m kicking off This Cerebral Palsy Awareness Month by diving a bit into my journey with Cerebral Palsy so far.
Growing Up: Learning About It & The Startle Reflex
As a kid, I knew that CP was part of my life and I wouldn’t walk and that was that. We didn’t really talk about the specifics. My family’s focus was to ensure that I had as “normal” a childhood as possible as well as the mindset that my disability wouldn’t stop me from living the life I wanted which was definitely easier said than done. During this time, I used a manual wheelchair, I loved pushing myself around as a workout when I could and I had great reflexes making sure my purse didn’t fall off my lap during sharp turns. It’s funny thinking about it now and all the situations I’d gotten into with my wheelchair. I loved this aspect of it, though texting and wheeling myself around wasn’t a possibility, it still isn’t, I still have memories that I know are due to my disability and I am grateful for them.
Cerebral Palsy has added to my life in so many ways, but one of the ways I learned living with this disability wouldn’t be easy is dealing with the startle reflex or as I like to call it CP’s pesky sidekick. Dealing with fire drills in school, sudden loud noises wasn’t fun, my mom used to tell me to tell myself that a sound was coming in the case of the fire drills, but for obvious reasons that didn’t work. Some days, it was one of the hardest parts of dealing with CP. Now that I’m older I can look at it differently, but I still wish it wasn’t part of the disability. These early years I wasn’t inundated with questions from people, no, that honor went to my mom or whoever happened to be with me at that time. It was annoying and strange to me as a kid, I knew I wasn’t walking and that was different than most people experienced, but I didn’t understand why they would bypass me to ask questions to the person I was with for their questions, not that I wanted to deal with it mind you, but it was something I often wondered about in my later elementary and Jr. high years.
The College Years
Fast forward to the time I was in college and life was so different, for one thing, I didn’t have an aide with me for the majority of my first year, not the way I automatically had one in high school and figuring out how to get things done for myself was difficult. Once I figured that out, I loved my experience in college, no it wasn’t how I thought it would be in some cases: I couldn’t do some things, long days of classes weren’t easy and there was the occasional accessibility problem, but I loved it there. College was also the time that I really and truly learned what it meant to advocate for myself even when it came to standing up for myself when my family was protective. It was very easy to let my family members or my mom be overprotective when I was dealing with the average person and their inappropriate questions about my disability when I was younger, but I also let them do that because they wanted to try something new or learn a new skill for my independence. Protective family members and my independence are not mutually exclusive concepts, but my college years was when I started to find balance between what I wanted and needed to do and my family’s protectiveness, learning when to push back and when to let them have the win, but it’s a work in progress.
I adjusted to life in college and focused on the academic portion of it all I studied business in school and if you’ve been following me on social media or reading a few posts on here, you know that I wasn’t at all prepared for how my disability or rather its visibility, would affect my job prospects and if I knew, I would have done some aspects of life differently, something I’m sure everyone says at one point or another. After I graduated from school, I job hunted and eventually landed an internship as a digital media intern. This was my first introduction to blogging as more than a hobby and years later, here we are.
Post Pandemic & Future Plans
Writing this blog post is so strange now because it’s the beginning of March and officially two years since we first shut down in NY and everyone started to realize how serious Covid actually was, but it helped me realize how far I’ve come with some things. So, what’s next for me on this journey in this pandemic- post pandemic world?
I have loved my time creating this blog and I’m hoping it’s only the beginning for the Sitting Beauty brand. I’ll admit, I’ve had some of these ideas for years and I doubted it and myself, it’s easy to do when the idea is so new and different.. well, I don’t know if it’s brand new anymore, but it’s definitely different. I’m reminded of a saying that I have to keep saying when that doubt creeps in: “Don’t compare someone else’s chapter 20 to your chapter1.” In some ways I wouldn’t consider myself at chapter 1 and in other ways I would. However, I am trying to focus on what it is I want for this brand and how to get it there. I could get annoyed at the time I wasted doubting myself or I could get to work. I’m choosing the latter, or trying to anyway. I’m trying to enjoy the journey living with cerebral palsy wherever it leads.
There is so much that has changed when it comes to how society deals with people with disabilities,, we have barbies with disabilities, some adaptive fashion brands and beauty products that take some struggles that people with disabilities face into account, that being said, there is so much more that needs to be done. I know what I want for this brand and I know the impact I hope it will have on the disabled community and the world. This is my focus, well that and job hunting again now that the pandemic has changed the way we work and interact in the workforce. I hope that I get to put the degree I worked hard for to good use, but I also hope that the brand that I’ve put so much thought into becomes everything I thought it could be for my sake and others in the disabled community I’m looking forward to all the things it will lead to because I’ve enjoyed the journey with Cerebral Palsy so far and I can’t wait to see what’s next.