Have and Have Nots

Part II

UNION: the state of being united

The existence of a first-tier and second-tier within a “UNION” seems somewhat contrary if not oxymoronic. Unfortunately, the United Food and Commercial Workers are not the only union negotiating in such a manner. The same has happened elsewhere. What kind of “union” exists for people with disabilities?

How many advocates are truly against institutionalization and what it brings to people with disabilities, public claims notwithstanding?

How many advocates truly desire a quality of life for ALL people with disabilities living in the community, public comments notwithstanding?

How many act simply out of the desire to get rid of what they see as a first-tier pushing down on the heads of their children, or better yet, out of the desire to create a new first-tier occupied by “their” children?

Last year Donald Santiago, a former Agnews resident, died of pneumonia after being moved to a Union City group home. Was Donald’s death preventable, and by what means? State investigators found that the group home failed to have a nurse sufficiently involved in Santiago's care and issued an $800 fine. Would more funding have provided for a nurse that was “sufficiently” involved, or was there something other than funding creating this reality? We don’t know.

Our complete lack of understanding notwithstanding, some commentary did not hesitate, after the usual preface of sympathy and compassion, to use the death of Mr. Santiago as a segue to announce who is responsible for our ills, “the State of California […] the courts, […] state agencies and the State Legislature”. All People with disabilities deserve more complete and sober considerations.

Our government-at-large most certainly shares some blame, but our government “at large”, that all but intangible entity that will not talk back, is an easy, fashionable, and therefore a somewhat trite target. It is the bête noire that drowns out our individual, self-less, and magnanimous voices.  It is the grand inertia for which we have no hope of influence and therefore we can’t, we shan’t – share in any blame!  How convenient!

The benefits of blaming our government alone are so numerous and comforting that this circumstance, if duly attended to, would furnish a lesson in introspection and objectivity to those who are ever so quick to cast stones far and wide.

• Our government was not the architect of the 2003 eligibility changes, and California’s new two-tiered system. Although, it did make them a reality. 

• Our government our “Society-at-large” was not the ONLY entity to obfuscate and dissemble about Sanchez v. Johnson. 

• “Society-at-large” did not force Danielson to look the other way as Hebert revved up to beat Marissa to death. 

• “Society-at-large” did not allegedly promise David Maggi 24/7 support and give him something less.

• “Society-at-large” did not foment the environment where individuals feel so insulated from consequence that they can film beatings and keep the video for posterity. And –

• It is possible that our “society-at-large” could not have prevented the death of Mr. Santiago because others, closer to home, refused to step up.

In regards to services renders our “Society-at-large” controls very little of the nearly 4 BILLION dollars allocated each year. Instead 21 non-profit regional centers are charged with spending public dollars responsibly, and establishing quality controls for California’s population that receives service via the Lanterman Act.

Of course, if you believe that our “proverbial mousetrap” is beyond any reproach all that remains is to blame, “the State of California […] the courts, […] state agencies and the State Legislature”. However, I find this position, this option, untenable. So untenable that in some respects it seems that a sober reflection of our “advocacy” might reveal an unfortunate reality. Those who advocate the “truth” are not influenced by purer principles than those we call the “opposition”