You know, most people think that living with Cerebral Palsy is hard. I beg to differ. Cerebral Palsy is a part of me, and I have gotten to know it very well. I believe that, while Cerebral Palsy has its challenges, it is not the most frustrating part of my life. The most frustrating part is being a 28-year-old college student, intern, and research lab assistant, all while trying to balance proper care.
When most people think of caregiving, they think of an older person who spends most of their time home in bed and has a set schedule. I wish my life was that predictable, but truthfully, it is not. The thing about having a disability is that, no matter how much I try to prepare, it is nearly impossible to fully prepare for weather, car trouble, or traffic. I consider myself to be very independent – I know my needs, and I am comfortable sharing them with others to keep my days running smoothly -- but what happens when an independent person’s day-to-day functions are affected by other peoples’ punctuality and dependability?
For example, I have caregivers who come in twice a day. If they are late, I am also late. I completely understand that life happens to all of us and sometimes things do not go as planned. However, it is hard to be a contributing member of society if one cannot get out of bed and to their doctor’s appointments, school or work on time.
People with disabilities are intelligent and full of great things to offer the world. The challenge is often not our differences, but our circumstances getting in the way by no fault of our own. Care can sometimes be tough for the person who needs it, as our independence is sometimes overshadowed. I am often embarrassed to admit that I have a life alert nearby when I sleep and need help getting in and out of bed. In all honesty, though, this is my life. Although I need help with some things, I’m still a competent individual. I am an active student on campus and a contributing member to the workforce. Now that I think about it, don’t we all struggle to get out of bed each morning?
Life is unpredictable. Living with a disability means following a new set of rules each day. But one rule remains the same: living independently is not always about what you can and cannot do for yourself. It is about persisting past any limitations that are out of your control. It is about keeping up with your college coursework, even on rainy days when your wheelchair can’t get you to class. It is about applying for internships and research assistantships despite worries that transportation and caregivers might not always get you there on time. Most importantly, it is about remembering to remain grateful no matter your circumstances.
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Shanae Heard is a senior at The University of Nebraska-Lincoln studying Psychology and a Public Policy Intern with Disability Rights Nebraska. She enjoys volunteering in the CB3 research lab on campus, playing video games and spending time with her service animal.
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Photo credit: Camila Damasio via Unsplash.com
