The
business as usual conception that equates work with “employees doing jobs”
seems so ingrained that the more general idea of engaging outsiders in
meaningful ways – that's what patient partners are relative to an organization –
is fairly foreign, I believe, to most organization leaders.
Nonprofit EDs, CEOs,
and board members think in terms of having to manage inside staffs. Their jobs, in their minds? Mold their staffs to fit their organizations’ needs. Each and
every staff member's job, in turn, is to be responsible for his or her role...which he or she does by carrying out projects and taking actions in line with whatever's the master
plan.
"Manage staff" is just one of a leader’s many jobs. My
impression is that not many excel at it. Fewer still, as far as I can see, try hard to truly equip and empower their staffs. (which falls under the heading
of delegating well) Now we’re expecting those same people to equip and
empower patients? To engage with complete strangers, i.e., outsiders? Quite a big ask.
In my experience as a constituent of several nonprofits whose works touch in one way or another on neurological disorders and conditions, and whose
effectiveness, in turn, may touch on the quality and longevity of my daughter's
life, the leaders of those orgs are happy to have any monies I may be able to donate. They welcome volunteerism – “Get involved!” – in the traditional
sense. Apart from that, however…
I can barely give my help away to them. I've
been trying in earnest for the past two-and-a-half years (since the time I
began this blog, much of which could be read as a record of how I've tried to
be of service). Apparently they and their inside teams have everything under control.
In my
mind, those nonprofits that presumably exist to help my little girl are
fortresses. They cannot see me or other parents like me. Unfortunately – ridiculously
– outrageously – criminally – I couldn't join in their reindeer games if my
life depended on it.
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