• 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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Florida Self-Advocacy Central is the news and information arm of Florida Self-Advocates Network'D or FL SAND

FL SAND and Florida Self-Advocacy Central are projects provided by the Florida Developmental Disabilities Council, Inc., supported in part by grant numbers 1801FLBSDD, 1901FLSCDD-01, and 2001FLSCDD-01 from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.