Cerebral Palsy & Fulfillment

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Lance Pounds is a Law student in Boise Idaho. He has consulted for Oregon Health and Science University as a disability advocate and interned in Washington D.C. In his free time, he likes to hike the foothills near downtown Boise and travel.

This article on TeenCP is about fulfillment in the lives of young people with Cerebral Palsy. I believe it is vastly important to reflect upon our own lives at any age, but especially during young adulthood because there is always something to be learned or gained from any struggle that we face. Many of us with CP at times, have had some significant emptiness inside of ourselves and do not know the reason for this. When I speak of fulfillment, I do not speak of fulfilling employment or an intimacy that is shared by a partner. Many people, disabled or not, have those fulfilling aspects of their life and still feel a kind of dark emptiness. Fulfillment is a life affirming and wide reaching essence that (1) builds up our self-esteem and self-worth (2) makes us content and happy in any stage in life through the self.  In the way I speak about fulfillment, it cannot be achieved through material or relationships; but instead; we find fulfillment through an intrinsic motivation that urges us to search for people, places, or things that will help us feel fulfilled by allowing us to have an identity in them. It is the ability and the will to choose. Perhaps, this comes from building a digital CP (online) or actual CP community that we can become a part of to gain a sense of our self-identity.

It is safe to say that everyone feels powerless or misunderstood in his or her own life at some point. We, as humans, may experience our own set of insecurities; ours might just stem from our disability. The irony is not lost on philosophers or social scientists that it is natural to feel that when we get everything we want, we seem to want more of it, or want what we cannot have. But this essay is not about a critique of modernity, or psychology. It is meant to be a guide for people with Cerebral Palsy who do not have the luxury of living inside the norm or even, with independence. This guide points to a community of peers, like this one here and many likes TeenCP. We cannot resort to society’s definition of fulfillment because we are not fully ingrained in society. It is a literacy all of our own creation and application. We can, however, make our own crippled community and feel fulfilled  within this community of people with CP.

Walking differently, experiencing difficulty with speaking, being dependent on a mobility device such as a wheelchair ultimately sets us apart with each difference, however small. Most of us are dependent on some others for some kind of care. Most of our friends and family members do not have these types of significant impediments in their own lives and can only understand what we go through to a certain degree. What kind of life can we achieve if we are dependent on others for survival?

Not a very promising one—at least that is what many people might think. I believe otherwise. I know it is possible to function in life, and be happy and successful! For hundreds of years, people have judged, mocked, and deemed abject, those who do not appear or move with the same amount of symmetry and precision as other human beings.  One would think that with the 20th century advancements in medical technology, this bias towards arbitrarily notions about able-bodies vs. limited bodies would be discarded in favor of a kinder philosophy but it is not. It is easy to feel different, to feel inadequate, weird, and frustrated about our bodies because we were raised in a world where people with disabilities are not held with the same regard as anyone else who does not deal with any sort of difference. These societal norms and ideas about “lesser” bodies hinders a healthy development of self-esteem and self-confidence that one hopes to attain into their adolescence and well onto adulthood.

Self-actualization may not be realized or attained as easily when the person has a physical disability which cannot be changed or made better.  How do we define our lives when doctors view us as unfixable beings? We are in possession of  weak bodies that last for an indefinite period of time? Doctors provide magnificent services that allow us to be more independent; yet, in my opinion it is hard for them to look at the disability and the person co-dependently of each other. Some parents worry too much, some parents don’t worry enough—and it becomes more and more difficult to gain a healthy about of happiness when we are constantly in conflict with ourselves and those around. Sometimes, our caretakers who want to help their child develop into an independent, self-sufficient being actually impede on this period of essential growth and do not let their child learn how to deal with pain, struggle, and conflicts. While they have our best interest at heart, we must learn how to survive on our own no matter how hard it might be for our loved ones to just let go.

This is also why finding a community that embodies those same traits, goals and occupations is so vital to one’s fulfillment with a disability like CP. One form of learning is through experience. Therefore, learning and listening about what others have done before you may help us understand where to find our own sense of strength, confidence, and fulfillment.  My college experience was less than stellar because no one moved the way I do or spoke the way I speak. College is an introduction to finding one’s self. I found that I was lost. There was not a single person in the small Christian college that I attended that was spastic or ataxic.  I did not experience fulfillment because there was no community that could help me provide that. That emptiness that I first spoke about was very much a part of my life during college. I could not escape the glaring and overbearing normalcy. I needed to find my own CP community.

A community of crips not only allows us to be part of a norm, it helps us create our own set of norms and tendencies that everyone else experiences with their own bodies. After college, I floated around aimlessly, still reeling from what happened in the college years. I finally took an internship at a disability rights organization in Washington, DC.  It seemed like it was a logical thing to do.  During that time with the disability community, I was able to heal. The problems that I faced with speech and walking was match by co-workers speech and walking. By seeing them struggle in the same way, I was able to validate my own struggles. Sometime, I was caught staring at others who were struggling, and remembered the people who stared at me when I was struggling. I had done the same as the people who I learned to despise. Empathy, understanding, was working. It was cleaning out the tender and sore spots that allowed for new and healthy growth.

This type of community like the one in which I worked with, felt like a luxury but it also meant that I could experience happiness, fulfillment, and be an integral part of a group of people who understood me. It is not available everywhere, especially in rural areas.  If you have the fortune of having a United Cerebral Palsy affiliate organization in your area, there is no reason not to connect with them.  The same goes for other organizations such as Independent Living Centers which provide a clearinghouse for issues on employment, housing, and other services that are needed for independence. If you are a parent with a child with a disability, and that child is struggling with issues of self-esteem or social skill, you are not a bad parent. They need to see others like themselves to develop a healthy self-worth. The sense of belonging can erase self-loathing when there is nothing else that can.  Put frankly, being in a community of peers is the easiest way to discover fulfillment on some level.

When this luxury of community is not available, it might be a hard road ahead. Entrapment does not only stem from physical inability but also, social isolation.  Someone might not even understand what self-advocacy is about. It takes an enormous amount of empathy, and courage to give others grace when they unintentionally or ignorantly do something hurtful and you do not understand why.  Take my example: If a person with a disability has stared at other person with a disability it is harder to understand why someone may stare at the way you move.  This is not a problem that is easily fixed or remedied. It is a process and we all should be a part of this process because we can all provide awareness and education because we all experience CP differently.

If anything, there is always hope for those who cannot easily find and connect with a community of disabled people. If you are on this site, it means that you are looking for people that have the same or similar obstacles as you have. YouTube videos, PWD (persons with disabilities) blogs, and other forms of social media can never replace human interactions but it can provide a sense of comfort for those who need it. With all of this technology rapidly increasing and becoming increasingly popular, it is easy to stumble across YouTube videos or read blogs where you can laugh, cry, and talk with others who know exactly what you are going through on that day. These types of interactions help us all gain a sense happiness, and self-fulfillment that could not be provided elsewhere. Additionally, these websites and blogs can help inform society about how disabilities affect the body, and how everyone deserves and desires to be treated with as much normalcy and humanity as possible. This can be life affirming and we gain a certain amount a satisfaction in our life by going online when we cannot interact with our others who experience our own condition.

Let’s continue the journey. -Lance

4 Comments

  1. pablo

    I find your essay incredibly balanced and pertinent. By struggling too hard I must say I’ve achieved the almost 100% function level. But identity is a different story. And expectations simply won’t match possibilities because there’s too much that will be hidden costs the more proficient I get in tricking able-bodied into thinking I’m one of them with a different package. The fact is I have all the credentials they ask for, but still I cannot make it in their world. And because reasons for that are fuzzy, rather than measurable and straight forward, I myself would take the blame and think what a hell is wrong with me? Lately I’ve learned (after more than 30 years) there’s nothing wrong with me. But I still haven’t figured out how to deal with the gap between my education and skills and the material outcomes they generate in an adverse society.

  2. austeane

    Amazing article. I do not have CP, I will be working with people with CP, strokes or other forms of hemiparegia on an internship. I was looking for information on people living with these conditions, and honestly didn’t expect such an amazing blog or even that large CP communities existed. I am ignorant of people with disabilities still, and I am working to learn more. Treating people as people is my standard mode of engagement with the world, but I still have lots to learn about the challenges people with CP face every day.

  3. Sandy

    I also am impressed with this helpful blog. I do not have CP however, I work with people who do and the more I learn the better person I will become and the better work I will impart. thank you

  4. Shannon Downes

    Wow. What a wonderful piece of writing you have shared. I have learnt a lot. Thank you.

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