Ivan....
When one individual fights a powerful, uncaring, public or governmental
entity, it's kind of like the old joke "Where does an elephant in your living
room sit?" "Anywhere it wants to....." When it's a case of "THEM against
US," well, you gotta know the "elephant" is gonna sit on YOU if you're in the
place it wants to sit. (hoping this makes sense to ya).
Since I was laid off from The Microsoft Network last July and found that my
SSDI (Social Security Disability Insurance) "disabled" STATUS (we're not
talking money here - I expected none as I was on salary) had been stopped due
to the AMOUNT of my monthly salary, I've been battling the Social Security
Department.
When beginning work again, I carefully followed ALL SSDI's instructions in
order to keep my "disabled" status for the first 36 months after my return to
work. This was very important to me, because THAT is how I was able to
continue to receive Medicare. I worked for MSN for 22 months, so should have
been able to pick up where I left off with my SSDI "disabled" status intact
and my Medicare SHOULD have continued undisturbed throughout the entire time
of my employment according to SSDI's instructions.
With that "official SSDI disabled status" gone, I'm now back at square-one and
have been forced to reapply for SSDI and Medicare. Simultaneously, after
proving to SSDI they'd failed to notified me of the loss of my "disabled"
status leaving me unable to appeal that decision when I finally WAS appraised
of it, I was able to file an appeal against SSDI's decision to discontinue my
"disabled" status due to the amount of my salary.. These two actions are
handled by two different Social Security departments as near as I can tell,
and neither knows what the other is doing.
The FIRST time I went thru the dehumanizing experience trying to get SSDI it
took me 3 YEARS! I feel the ONLY reason I got it was because I eventually
hired an attorney. Whit my SSDI "disabled" status gone I'm now expected by
SSDI to "fight the good fight" all over again, and like you, after fighting PD
for 21 years, I'm just too damn weary to take on the entire SSDI once again.
That said, I AM fighting SSDI again... slowly...resentfully... with
frustration.. and some tears... and self-pity... and great anger... AND I
called my congressman (who DID give SSDI a bit of a push, but that's all).
<Errrr... did I say "resentful?" Make that "R E S E N T F U L!!!">
The thing that I'm trying to say here, Ivan, is I'VE found IF we want to get
help in situations relating to our disability which we consider to be dire,
USUALLY most of the tough work.. the "leg work," MUST be done by us as
individuals unless we hire-for-pay an attorney or other PROFESSIONAL advocate
.
There IS no powerful "Parkinson's advocacy group" nor is there a tough
advocacy group for those who live with chronic disease or disorders -
individuals like you and I who find themselves between a "stone and a hard
place" due to an incident(s) involving our disability. There's none because
the chronically disabled are NOT a cohesive group nor are we REALLY recognized
as a "group" by our government (despite the "Americans with Disabilities Act).
I believe unless and until the chronically disabled AND THEIR FAMILIES
AND CARE GIVERS form unified, out-spoken statewide AND nationwide groups we
will ALWAYS be on the outside-looking-in. We'll ALWAYS be helpless...
resentful.. angry....frustrated... unheard-as-individuals... fighting our
lonely, individual battles. And mostly we'll be ineffectual when as
individuals we "fight the elephant."
Ohhh..... BTW... I'm about to hire an attorney to fight SSDI... again...
'cause dealing with SSDI is just sucking me dry.
Barb Mallut
[log in to unmask]
----------
From: Parkinson's Information Exchange on behalf of Ivan M Suzman
Sent: Thursday, September 11, 1997 5:29 AM
To: Multiple recipients of list PARKINSN
Subject: How powerful is our COMMUNITY??
^^^^^^GREETINGS FROM^^^^^^^^^^
Ivan Suzman 47/10 [log in to unmask]
Portland, Maine land of lighthouses 55 deg. F warm wind
***********************************************************
On Thu, 11 Sep 1997 00:17:46 -0400 SJS-OnTheNet <[log in to unmask]>
writes:
>Dear Ivan --
>
>Sorry that this problem with NPF is getting to you so hard.....
>However, if you want to pursue it, my suggestion again is: consult a
>good
>lawyer and see if you do still have a fightable case.
Dear SJS and listfriends,
THank you for continuing to connect to me.
I can't thank you all enough for trying to help me "get over" the
HORRIBLE
and expensive experience I had to endure at the National Parkinson's
Foundation in Miami, Florida.
What I feel sad and unresolved about is that we are 1600 good,
caring people. We try out our ideas among each other. We weigh the pros
and the cons , and we listen to each other. Yet, when any one of us is
treated UNFAIRLY, the question arises:
How powerful are we, not only as loving advisors, but as a
political community??
It is apparent to me that ALL seven listpeople agree that I may
fight the NPF if I can, but I MUST try to accept what happened and let go
of my anger.
ALL of us, so BUSY fighting Parkinson's , really have no "PWP's
advocate" out there to go to the NPF, and say,
"One of our members has been wronged. We ALL expect the NPF to
address this situation NOW, so that justice is done for ALL of us."
So we lose our power! It's almost like fighting for the Udall Bill.
We struggle and struggle and there's STILL no Udall LAW on the books.
What I mean is that we have no "Community Representative" to help us when
we are truly aggrieved. OUR POLITICAL POWER IS INSUFFICIENT.
Then the work falls back on us INDIVIDUALLY! Honestly, I am too
exhausted from 10 years of Young Onset Parkinson's to spend those rare
"good hours" being David fighting Goliath.
So, whether it's the NPF, Newt GIngrich, or the FDA, I am going to
SCREAM LOUDLY with my now-softening Parkinsonian vocal cords. But at
some point, your inner voice says:
"We as a 1600-member community are not ORGANIZED nor CONNECTED
adequately to help listmembers confront "the system".
I just wish there was SOMEONE IN MIAMI--a lawyer that one of us
knows--who would go to bat for me(and really, for all of US)--rather than
my having to search on my own, like I was on a needle-in-a-haystack hunt
for someone to represent not just me, but again, ALL OF US.
Someone like Mr. Muhammad Ali comes to mind -- one of my greatest
heroes - especially because of both his spirit of resistance, and his
great capacity to love. What an incredible role model!!
I guess, my answer to all of you who are trying to empathize and
help me , is that the NPF should get phone calls in Miami and telegrams
and letters and should not receive dollars, and it should be
challenged-IN AN IDEAL WORLD-by people who have the strength to do so. I
can't and won't ask ANY of you to actually do that--you've all got ENOUGH
headaches without this, too.
Thank you all for your prayers, suggestions, and thoughts. I wish
we were more of a COMMUNITY. Our "cybercommunity" is at least far, far
better than nothing at all.
I am going into prayer over this tragedy. God is testing me.
Please call if you feel like talking to me directly.
Ivan Suzman (47/10)
(207) 797 - 8488
9 Range Street
Portland, Maine 04103
[log in to unmask]
The National Parkinson's Foundation, Inc. is (305) 547 - 6666
.
