Tuesday, January 22, 2013

The Class Nightmare of Disability

The Class Nightmare of Disability
by Jan Innes
February 8th, 2012


Seeking instant invisibility? Displacement from society? Separation
from the shared life expectations of friends, family and colleagues?
If so, become disabled.

Visible or invisible, commonly recognized or incomprehensible,
causing odd tics or socially-unacceptable behaviors, your disability
will likely make you actively ignored by others or looked at like a
circus freak.

("Mommy, why is that lady riding down the street in that chair?"
"Because there's something wrong with her, honey. Don't stare.")

"Something wrong" eventually becomes "not like us." "Don't stare"
becomes "it you ignore it, it won't exist."

After becoming disabled in 1994 with a poorly-understood but severely
disabling illness, I lost my career - and ability to work, home,
marriage, many friends and the place in the American upper middle
class that I had always known.

I now live in a shadow world where my illness is largely unseen,
ignored, incomprehensible or just too hard to look at. Concessions to
my limitations so that I can join in "normal people" activities are

But in this shadow world I've found brilliant, talented, creative,
loving and supremely courageous people who somehow keep going,
despite pain and desperation. And we help each other keep going,
often with very dark humor.

Some can still work, but it takes a hard toll. One friend has to plan
every day down to the minute to prevent over-extending his fragile
body. Another had to change careers radically after an accident, yet
still has no idea how long she'll be able to sustain herself. One
with a mental illness is under silent but not-very-subtle scrutiny by
superiors lest she go nuts. She describes herself as feeling "equal
but very separate."

Many of us can't work at all. Most I know are people like me who grew
up fairly comfortable, are well-educated, and had good careers. And
then disability put us among the "untouchables."

And because (Wake up, America!) there really is no financial safety
net, days are spent grappling with limits imposed by disability,
receiving little to no adequate medical care, and frantically seeking
ways to pay for food or meds or way-overdue bills.

Some could work a little, but guess what? On Social Security
disability, earning an extra $1000 per month will cause your
disability income to be cut off. To get MassHealth insurance in
Massachusetts, a single person cannot have monthly income over $905
(including disability) nor more than $2000 in assets. Similar limits
exist for subsidized housing, food stamps, access to food pantries,
any type of home assistance and other services. And even if one
qualifies for help, the cold dark mazes of ever-contradictory
bureaucracies make it nearly impossible to find it.

So the disabled are pushed out of the normal social class they know
and understand, through no fault of their own, and left struggling

Life is eased by knowing each other. Even passing on the street,
there's a sense, a look, a vibe that makes us recognize to each
other. We know the person we exchanged a glance with, perhaps a
smile, understands. Gets it. And what they are going through has
often given them a wealth of what is most needed to keep people alive
and connected to each other and to society - compassion.

How can we develop more of that to break the isolation of the
disabled and find ways to foster new senses of connection, safety and

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