The holidays are my favorite time of year. I love decorating, shopping for others and celebrating my family traditions, but my health had other plans this year. When I think about how my disability (cerebral palsy) impacts my everyday life, I often focus on the external barriers, such as inaccessibility and society’s view of disability and not how cerebral palsy effects my physical health.
A Routine Doctor Appointment
I have spastic quadriplegic cerebral palsy, which causes my muscles to tone out and constrict, making my movements rigid. To help manage my spasticity, I have a ITB Baclofen pump inserted internally in my left abdomen. I have had the pump for so long that I often forget that I have it until it is time for a refill. I must get my pump refilled every five months through a needle injection into the pump. These appointments are vital yet routine. Usually, I do not think twice about them. Then, at my most recent pump refill in December, my pump could not be refilled. It had flipped, blocking the refill port.
A Change in My Holiday Plans
In a matter of one 30-minute doctor appointment, my holiday plans went down the drain. I went from holiday cheer to having surgery. I needed to have emergency surgery to replace my pump with a new one, refill it and put it in the correct position. I had plans for Christmas pajamas and family time and then I would fly to see my best friend for New Years. Instead, I spent my holidays at home recovering. Not exactly how I planned to spend my holidays, but I had to roll with it for my overall health. To help make up for my absence, I received many pictures and participated in numerous FaceTime calls.
How Having a Disability Can Impact Life
I am fortunate that my disability does not regularly impact my health in this manner. The same cannot be said for other people with disabilities or chronic illnesses. For many people, their health impacts their daily life and railroads their best laid plans. This causes them to miss out on things. And for some, even the idea of making plans is near impossible because they do not know how their health is going to be from day to day.
For the last three weeks while recovering, I have experienced more anger about my disability and the fear of missing out more than ever before. What about the people that must miss out daily because of their health and disabilities?
A Call for Greater Inclusion
I once heard that people with disabilities are considered an absent population because we are not present. For so long, society assumed it was because we did not want to be there. They do not realize that we are often not present due to inaccessibility and lack of consideration for diverse needs. How can we stop just accepting the absence of disabled people and do more to ensure we include them?
About Isabella Bullock: Isabella, or Izzie for short, is an employment specialist for the Center of Independent Living. She is an iced coffee enthusiast who enjoys getting lost in a good book. Click here to learn more about Isabella.
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