Before I came to DC I approached advocacy and civil rights for people with disabilities through academia and theory. The greatest gift I have been given at NCIL (National Council on Independent Living) is the ability to be a public advocate. Being a public advocate has been an exciting and unexpected journey! Through this particular advocacy I have learned the difference between networking and connecting. In my mind, networking is the surface level to connecting, the building and maintaining a developing relationship. Connecting is about fully engaging. How does someone use this method of connection? Now, while many of my readers would expect me to write about my work to promote the ratification of CRPD, I will not be doing so. Another week, perhaps. I want to talk about a third form of advocacy. Familial advocacy. Yesterday, I found out my mother was officially diagnosed with dementia. There has been discussion and pre-tests for months that have led to such a diagnosis. Pre-tests and talk aside, it is now truth. My mother is 44 years-old. She has dementia. Dementia. 44. Dementia. My mother.
What is an advocate to do? What does familial advocacy look like? What does it entail? Surely it follows the same structure as public advocacy and the research skill that consumed me as an academic advocate. Yet, it feels more complex. And at the same time more important. How do I connect--engage to assist my mother? I don't have answers as to what a familial advocate is. I just needed space. Space. Space for an advocate. Great Space. Giant--advocacy.