1ST GOLDEN CABIN AWARD & CHALLENGE
Achairde All:
As I have said before and will probably say again, "Many are called but few are chosen!" Congratulations to Paledaemon for her honesty, bravery and truly heartbreaking Comment to, "THE FAMILY & GOVERNMENT DYSFUNCTIONAL:
I'm A GCA Award Winner
She joins the ranks of fellow bloggers Miss Pat, Bitzky, MindCandy, Sharon B, Keith and the like. A rare company indeed. Massive kudos are due, folks.
That was a difficult article for me to write and I wasn't surprised that I didn't have many Comments. What did surprise me is the over 1100 emails I received and most of them were as heart wrenching as PD's situation. Two things have really shocked me since I became Disabled at the age of 31. One, if you or one of your children is Disabled there is only one state that mandates that Domestic Violence Shelters take you. For the rest of us there's "No Room At The Inn". (I know from first hand experience since I called the shelter here in Tampa while I was 'married' to the late, unlamented and annulled PFG. They wouldn't take me because I was still in a wheelchair. When I asked WHERE I could go their answer was, "No where here in Florida!")
This is the second. There are many Disabled people who do not qualify for an Assisted Living Facility (and wouldn't want to be in one of those snake pits anyway) who receive little or no help from their families. I am not speaking of personal care or money or housing. I mean help getting to the doctors, picking up scripts or getting groceries. The saddest thing of all was the majority of the people who wrote me told me that they were made to feel ashamed, were accused of 'faking' their Disability despite overwhelming evidence to the contrary or had family members deliberately pick fights so they could justify not helping out.
When did we become so uncaring as a society? One of the things I do, besides write CFO, is to help people find Social Services or step in when they've been denied assistance they qualify for. It isn't a freakin' Personality Contest folks. I have helped people that I would not choose to socialize with even if you had put a gun to my head. However, that's not the issue, is it? It's getting them the help they need and are entitled to. And the damnedest thing about it is it's the Disabled person who is embarrassed about it. Not the uncaring and self-centered families!
I used to just cringe when someone from the FL DCF, Self-Reliance or other Agency would ask about my family assisting me. I usually broke it down to one sentence, "They have chosen not to participate in my Health Care." Which earned me quite a few, "Yeah, riigghhtt!" remarks. Before Medicare Part D, when I was getting my meds through Hillsborough County, they grilled me so throughly that I actually burst into tears right in their office. They wanted my sisters telephone numbers and I wouldn't give them up because I was so ashamed and I was trying to protect THEM!!!
Now when someone asks I give them my Health Care Surrogates phone numbers and suggest they call them to ask about any family participation. The DCF called both Sandy and Avery on the subject and while I did not ask for the particulars I got the distinct impression they weren't near as 'dainty' as I would have been under the circumstances! Since I started doing this the Agencies have put away their pliers and don't ask me anymore.
That's what makes Paledaemon so brave. She makes no bones about what her family is doing to her instead of keeping it a dirty little family secret. People who read the Comments and wrote me said it was because she gave them the courage to email me about their own situation. She not only deserves her Golden Cabin she should have the respect of every person here.
Something else to keep in mind, after Katrina rescuers found a large number of Disabled dead in their apartments because they had no way to get out. 65 people in one Extended Care Facility died when the owners ran for safety and left them there to drown. Only ONE Disabled individual made it out of the Twin Towers on 9/11. That's because two co-workers carried her down 90+ floors to safety. Everyone else who went to the floor they were told they would be evacuated from DIED.
It's hard enough to be Disabled. It shouldn't be a Death Sentence during a disaster. So I am challenging the Able Bodied among us to come up with some ideas on how you can improve things!
Slan leat,
Elaine
AKA Cabin Fever
CABINFEVERONLINE
MOOD: BLOODIED BUT UNBOWED
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TAGS: daily life, disability, families with disabled relatives
Leave a Comment
GCA Award and other things...
5:47 AM, Monday 19 November 2007
.. Posted by paledaemon
First of all:
You have no idea how touched and honoured I feel! I never think of what I write as anything special these days, but it is the truth, unvarnished and sometimes painful to type, and if it makes someone feel less alone in their own private hell, then I've done something worthwhile.
(How do I pick up my award? I copied the pic above, but is there something else I should do?)
Second: I'm losing my freakin' mind. I posted a comment over here under this post earlier....well, I THOUGHT I posted it, anyhow! LOL My memory has become so spotty....I can't tell what I've done, not done, started to do and never finished.....ARGH! It's the Lupus. When it flares, my mental functioning takes a nose dive. Not having a clue if I finished something I started is the second most frustrating thing about it....Number one is when I find myself staring blankly at something - usually simple - that I KNOW I know how to do, and not having clue one where to start or how to do it. *sigh*
Third: You are a gift to the Universe and everyone you help, have helped, will help. I was legally prohibited for 3 years after I stopped working from assisting anyone who wanted to file for benefits - because I had been a SSA rep. After 3 years, the gov't didn't own me, and I remember a rather terse conversation I had with a branch manager who didn't like it when I came in with someone - a friend of a friend of a friend - to help him file. Some people act like the benefits come out of their personal cofffers. Ugh!
Lastly (for now): I have taken to avoiding the whole family issue. I've learned to tell people, "I have no living family to speak of except my sister (who recently moved back from out of state and is both nearby and loving/supportive). Everyone else is either elderly or gone." It usually stops the inquiries. They assume "gone" means "deceased" when what I mean is "gone from my life, anyhow." Whichever. Amounts to the same thing to me.
Hugs. Mahalo.
(I also think I sent you a private message...if I didn't, I thought I did....let me know.)
Untitled Comment
12:57 PM, Sunday 2 December 2007
.. Posted by bitzky
Congratulations Paledeamon! Indeed, that was some heart-breaking story. Can't understand why would anybody do that. Although I have my quarrels with my mother I am trying to help her whenever she needs it. I don't like my conversations with her but it is my duty. I don't always like it (and I feel guilty for it) but nonetheless... You are both inspirations to others! *moomin hugs*
Untitled Comment
1:07 AM, Tuesday 11 December 2007
.. Posted by paledaemon
Thanks. Some days are harder than others to deal with ...right now, Herself is feeling VERY abandoned and rejected...it isn't like she didn't already know they treat her like garbage, but she's just now getting to the place where she can let herself grieve.
GCA AWARD
Achairde Wynter:
I am so glad that you are pleased with your award. I don't give them out lightly but your courage, kindness and sweetness of spirit deserved no less. I also wanted all my readers, including those at other sites to know what an incredible woman you are. I have a sister who sufferers the same slurs you and Herself face and it's a mystery to me, that with so little love in this world, why anyone would want to judge someone who found a bit of it! I know that you are also disabled, have a child with a disability and now Herself is having problems. This might sound a bit odd but with all the downs you all face you've got the greatest of goods- love and each other.
Your comment gave so many people the courage and step up and say, "My family treats me the same way. I have been so ashamed for all these years. Then I read your column and that lady's reply and I began to think that it wasn't my fault. I've even begun talking to my doctors about it and they tell me that they see more patients that have been abandoned by their families than are helped by them. Thanks and God Bless to you both!"
You not only helped them- you helped me as well. If you read, The Story of Orville" you know that I was not raised to be that way and neither were my sisters. They would NEVER have tried this on me if Mama had been alive. Much less come into my own home and do it on my birthday (sans cake or gifts). They can't run that fast!
The funny thing is that after all these years NOW they are reading my columns. Not because they are proud of me but because they are looking to see if they are in them and if they are I get these threatening emails about never mentioning them again. Or what? They'll be mean to me? They can't sue me because I was writing in First Person and EVERYTHING I said about them is true. That's the other thing I find amusing, they NEVER say they didn't do it- just don't put it where other people can see it!
I do have some pity, I DIDN'T mention it when my Father went back into the Hospital after being released from his Heart Attack AND NO ONE CALLED ME TO TELL ME HE WAS THERE! He could have died and I wouldn't have been there. Which on the Bastard Scale comes right around deliberately running over small puppies, telling small children there's no Santa or being rude to a Nun!!! The main reason is my Dad doesn't like to see his name in print.
But either way we did good work together. I have spoken to all of my own physicians and they all say the rare thing isn't abandonment- it's having the family help out. (Like Dan's family takes care of me when they can but between Martin's stroke, Grandma's Parkinson's and Dan's 15 year-old nephew just was diagnosed with Bipolar Class 4 Mixed Mania/Mild Schizophrenia their plate is pretty full right now.)
They also read your Comment and they all said the same thing- KEEP IT UP. It's because the patients are ashamed or don't want people to know what is not being done for them that they hide it from everyone including their doctors. This is a problem that needs to see the harsh light of day especially since Social Services are being cut on the State and Federal level."
Amen to that! Before I forget the link to your GCA is:
http://www.efx2blogs.com/uploads/c/C...e/1171.jpg
Slan aghra,
Elaine/cf
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