Help Isn't a Four Letter Word: My Truth About Independence
In the disability community, independence is often the #1 goal. We talk about it in doctor’s offices, we strive for it in physical therapy, it’s center stage at IEP meetings. I’ve heard parents say it’s their first concern when faced with their child’s diagnosis. For so many, we don’t feel successful until we can do everything ourselves.
I used to subscribe to this idea. Doing everything on my own felt like my way to prove to the world that I was disabled, but like, not really. In the years leading up to going away to college, I mapped out my daily routine in my head, planning, changing and trying everything to make sure that for the next four years, I could live life help- free.
I arrived at my dream school anxiously awaiting freedom. On top of all the other excitements college brings, I think I was excited for another reason. This was my chance to prove to everyone that my CP truly didn’t define me. In a lot of ways, independence was on my side. My Cerebral Palsy is mild enough that I can do the vast majority of my personal care on my own, and I am grateful for these abilities every day. I can get out of bed myself. I can brush my teeth and get dressed. I can shower and use the bathroom independently. All the main bases were covered. What could go wrong?
Well, lots of things.
When I carried clothes from the downstairs laundry room to my fourth-floor dorm, I left a trail of shirts, pants, and sometimes bras for all to see. Trips to the grocery store were lengthy and frustrating. Sometimes, I skipped out on buying essential items because they were on the top shelf, or there was no room in the basket I could fit on my lap. Among my more practical obstacles were personal, seemingly insignificant struggles. I couldn’t curl my hair and do elaborate eyeliner like the other girls in class. Several pairs of shoes sat untouched in my closet, impossible to put on without help. I arrived at parties feeling self-conscious about my outfits and my hair, limited to styles I could manage on my own. In my quest for the ultimate freedom, I had actually never felt more trapped.
These small inconveniences grew into larger, less manageable frustrations, and eventually, a terrifying realization. I was going to need a little help.
With the help of the Disability Resource Center at my school, I set out my search for a personal assistant. It was embarrassing to spread my personal needs across the internet for all to see, but the response I received was incredible (you’d be amazed what college students will do for $12 an hour, seriously.) Before long I had a line of girls ready and willing to help. Remember the show Paris Hilton’s new bff? It was kind of like that. Within a week, I hired a sweet girl who was down to do laundry, take out trash, do hair, nails, and even stick her finger in my eye to help me with my contacts. After just one meeting with her, it became clear that my life had just become more productive and 100 times less stressful, all because I had the courage to ask for a little help.
I spent the next four years of college with a wonderful team of girls by my side. Gone were the days of spending an hour changing the sheets, now I was free to spend that time studying (or partying, but whatever). With help styling my hair and putting on makeup and clothes, I began to feel like myself again: confident and carefree. For me this isn’t vanity- it’s dignity.
But somehow, even with all the positives that came with my assistance, I still felt ashamed. Having help felt like a dirty secret- something I was determined to hide.
“I’m just not a morning person, but I’ll catch up with you after!” I’d say, as an excuse to cover the help I was getting in the morning.
“Oh, I have an appointment after class, but you can come over after that!”- No way I’d tell a friend I was getting help with laundry.
I warned my helpers about these privacy concerns. “If anyone asks, can you just say that we’re friends?”
Underneath this secrecy was my deep seeded belief that if I couldn’t do everything on my own, I had failed.
I now realize that independence doesn’t mean doing everything on your own, it simply means being able to live life on your own terms. In refusing to accept help, I was actually building barriers around myself and the opportunities available to me. I didn’t truly find the freedom I was seeking in college until I let go of the need to do everything on my own.
Hired help is something I will probably always need to live the life I want. My needs have grown and changed over the years, and my caregivers past and present have become some of my best friends- I often joke that I will have world’s most helpful bridal party. Being in charge of my care team has taught me invaluable skills- how to manage, give clear direction, and set boundaries. Having help gives me a new type of freedom- the ability to live life in the way I would if it weren’t for my disability. For me, this is what it means to be independent.
Independence is an admirable goal, and something I work towards every day. I will never take the abilities I have for granted. Everyone should strive to be the best version of themselves, while keeping in mind that independence can take many forms, and may look a little different than you originally thought. Remember: Help isn’t a four-letter word.