Can We Stop Saying Caregiver?

On April 22nd, I will be giving the keynote speech at the ARISE Celebrating Inclusion & Achieving Independence Dinner at the Oncenter in Syracuse, NY. Here is a description of the organization from Nancy Kern Eaton, the Director of Development & PR:

ARISE is the designated Independent Living Center for five counties in Central New York: Onondaga, Oswego, Madison, Cayuga, and Seneca.  We work with people of any age with any type of disability.  A majority of our board members are people who experience life with a disability and our mission is to create a fair and just community in which every person, regardless of disability, can fully participate.  We have more than 50 programs and services and offer inclusive recreation at ARISE at the Farm, a 77-acre recreation facility in Chittenango, and ARISE & Ski at Toggenburg Winter Sports Center. 

I am absolutely honored to have been asked to speak but was curious about one small detail, "Why are they asking me? I do not have a disability." Those of you who are familiar with this blog know that my stupidity knows no bounds. After a few moments of reflection, things sunk in: It is conceivable that I may be disabled in the future.

No one knows what the future holds with Parkinson's disease as everyone gets their own version of it (an individual sport in a team game) but becoming disabled is a possibility that one cannot ignore. Denial is a powerful tool and I simply refuse to see this as a potential outcome but, if I'm honest with myself, it is. Now I can negotiate the idea of living with a disability but I absolutely hate the idea of having a "caregiver." I even hate the term itself---the conceit being that you are far too unwell to manage your own care. 

When I imagine my future, I typically fantasize about living on the moon and my "caregivers" being a helper monkey named Leroy and three hot blonde nurses from Sweden. While this is likely, what is even more probable is that as the disease progresses, I will need some sort of assistance. What I hope to never need is a "caregiver."

Language is a powerful tool and the way we frame illness matters. People who tend to talk in terms of losing to a disease typically do so in much quicker fashion than those individuals who are willing to fight. By using the label caregiver, we make it seem like a forgone conclusion that someone with PD will eventually be unable to take care of him or herself. I tend to view Parkinson's as a disease of gradual diminishment but the atrophy can be slowed by attitude and action. I need a term that fits my paradigm and it certainly isn't "caregiver."

So smashcut to 2040, I'm 60 years old and have been living with PD for 30 years. What do we call the person that takes care of me?  I would prefer the term daughter, friend, 5th wife, etc. because my hope is that "caregiver" is not necessary. That the care they give me is the same care that I give in return.