Oakland          A longtime friend and comrade, Gary Delgado, caught a blood clot after successful heart surgery, almost five years ago, which triggered a stroke and aphasia in its aftermath.  The process of his recovery of speech and other vital cerebral functions has been steady with marked improvement, but is also ongoing.  Among many other things, he is an organizer and, in his career, worked for welfare rights and was the first organizer I hired to work with me at ACORN.  He then went back to school and got a PhD.  Later, he founded the Center for Third World Organizing (CTW) and the Applied Research Center (ARC), now called Race Forward.  Predictably, living through this health tsunami, he has increasingly sought to bring others with aphasia together and in so doing change the treatment and care system involved, especially because the impacts disparately impact lower income and minority men and women both here and globally.

When he reaches out to me to ask for any assistance, he knows my answer is yes, even if I am usually clueless about how to help. When it comes to organizing and looking at the campaign he wants to undertake, maybe there might be a way to lend a hand?  All of which made my answer automatic when he asked me to come to Oakland for a day to see how to bring this forward.  I joined about fifteen others who also answered the call.  Some were not known to me, including speech therapists, lawyers, healthcare workers, and academics he had met along his new journey.  Others were either old comrades or people whose paths had often intersected mine in the past in our various organizing and fights for social justice and change.  It was an eclectic and solid group he brought together in a library on Fruitvale Avenue.

A lot of people face this crisis.  The numbers are in the millions in the US, and perhaps 10 million worldwide, but not so many that there’s a common public or even clinical understanding of the condition.  It affects people differently, neurologically.  Speech, comprehension, writing, reading can all be impaired, though speech is perhaps the most frequent issue addressed in treatment, and speech therapists are frontline in dealing with patients.  All of these impacts create barriers for patients to self-advocate and self-organize without support and assistance in many cases.  With treatment regimes dominated by insurers, seemingly without any medical research or experience, assistance is often time-limited within the first three to twelve months, based largely on common consensus and advice.  At the same time, if a doctor orders continued treatment and a speech or other therapist is available to provide it, the support can continue, but the burden is too often on a patient, their caregivers, and family having to advocate for such extensions when many don’t know they are available or are wrongly counseled against continuation.

Among this small volunteer army of the willing, there were a host of questions that required more research.  What were the regulations, insurance and public health standards state by state?  What groups were available as allies?  Was there a way to have aphasia reclassified as a neurological condition with no fixed timeline, like autism and other conditions?  How could we educate the public as well as medical professionals?  Were there funds that would help a group be developed and next steps to be taken?

These questions were the tip of the iceberg.  Assignments were given.  Commitments were made.  Gary was adamant, and there were no quitters in the room, but everyone was clear we still had a long road to travel to find the handles, help build the base, and launch a campaign.  We were forging the will in Oakland to a common purpose, but we all knew we were still trying to find the way.