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  • Jason Hahr

Self-Advocate Ponders the Ultimate "What If?"

As Socrates famously said, “An unexamined life is not worth living.” But who defines what it means to have a “life worth living” or what we might today call a “good life”? Is it defined by physical health or quality of life?

A recent television show took a thoughtful perspective to this question and got me wondering what exactly defines “quality of life”?

This piece asserts that quality of life is not a universal concept but an individual one, particularly when it comes to people with disabilities and how they function in the world. The subject of the episode pertained to a man who was paralyzed from the chest down. He was given the opportunity to “cure” his disability and the episode centered around the question of what he would do.

I am 31 years old and have a severe form of Cerebral Palsy. I have often grappled with this question: If science developed a simple cure for CP, would it be worth radically altering my life and would I be better off doing so?

If I were not born with my disability I believe my perspective would be different than it is now because I would know what it was like to be on “the other side.” I have a family member who developed his disability later in life and he often says he would take a cure in a heartbeat, no matter the risk or consequences, and often questions me as to why I am hesitant to agree with him. I am an analytical person. I wonder if my life would really be better although it would be different.

I have developed a routine which involves heavy amounts of aide care, but I live a pretty normal life. I travel, I enjoy my friends and family, I contribute to my community, and for the most part, I enjoy my life. This is why sacrificing it all just to be able to feed myself or toilet independently would be a difficult risk for me to take.

Yes, it would be nice to have more privacy, but I don’t know that I am willing to re-learn how to live in order to obtain it. Even if the cure was as simple as taking a pill, my perspective wouldn’t change. In the television show, the character was told they would have to undergo months and years of rehabilitation and physical therapy. I don’t know that I would be willing to go back to being a two year old in a grown up body.

Simply put, for me, the benefits of a cure would be outweighed by the following. I am comfortable with who I am as a person. I have developed a unique way of looking at the world. I do not take myself too seriously. I have an awesome sense of humor. I do not want to lose those characteristics for any reason. My sense of self is uniquely tied to my disability and events that have occurred in my life.

Self- Acceptance is the cornerstone of self- advocacy. If one is determined to be a powerful self- advocate, they must first accept the circumstances associated with their disability that they cannot change. This is true in any facet of life but particularly true when one is a disability advocate. If I was not completely comfortable with who I am as a person my self-advocacy would be ineffective. To put it more simply, if I elected to receive the cure for CP I would no longer be a “self advocate.” I would instead be a disability supporter and ally; and while allies are crucial to the disability rights movement, the most powerful voices in the community are self- advocates like myself and others.

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