Notes From The GiaSphere

Twitter Updates for 2010-10-22

Administrator — Fri, 22 Oct 2010 05:01:00 +0000

Exploitation is a daily fact of life for disabled people. #
Whether we're aware of it or not, someone is always gaining from our lost health. Medicare fraud, unscrupulous attendants, etc. #
Then there's direct exploitation from people who will take from us personally what little we have because we're easy prey. #
It never becomes OK, but after many years of disability, one can get to the point that as long as the exploitation is not sexual . . . #
It becomes almost tolerable, like another annoying symptom always running in the background. #
The healthy public only wants to see the bright, sunny side of disability success stories. #
The media is more than happy to oblige, and those success stories are out there. #
But those successes are like the cracks of sunshine that come in around the edges of a window with its blinds closed. #
The vast majority of us grind on about our daily lives by artificial light. #

Twitter Updates for 2010-07-20

Administrator — Tue, 20 Jul 2010 05:01:00 +0000

Social Security Debit Card Warning: http://www.disaboomlive.com/forums/t/51699.aspx #

Twitter Updates for 2010-06-24

Administrator — Thu, 24 Jun 2010 05:01:00 +0000

Myth #2: We don't need to take disabled people seriously. #
IMHO, not being taken seriously is the most frustrating aspect of being disabled. #
Let me just say this. We vote, and we spend money. #
My vote counts just as much as that of the most uber-fit athlete in the country. #
And as the old saying goes, my money is just as green as that of the next person. #
Myth # 1: Disability doesn't really exist anymore because of all the recent advances in medicine. #
This myth is the main reason why I started this Twitter page. #
The media does not portray disability correctly. Disabled people usually featured in the media are high-functioning "success stories." #
Blind people and people with prosthetic limbs who climb mountains, paraplegics who sail the oceans alone, etc. #
For every one of those, there are 100 others like me, folks who function moderately well and go on about their daily lives. #
For every one like me, there are 100 others much less fortunate, less able, in institutions, dependent upon machines, and so forth. #
To present the idea in the media that disabled people no longer have needs is a huge overstatement. #
Many of us do still have unmet needs and are not afraid to admit that or ask for help. #
For those among us who have overcome all and require no assistance, great! Nothing here to diminish their accomplishments. #
The rest of us, however, may still need a helping hand from time to time, as well as a little patience, understanding, and tolerance. #

Twitter Updates for 2010-05-29

Administrator — Sat, 29 May 2010 05:01:00 +0000

Levels of use range from total confinement to occasional, assistive use, such as an MS patient who uses mobility aids only in a relapse. #
In fact, most power wheelchairs, like mine, come with optional accessories such as cane holders and walker haulers. #
The idea is not to confine, but to support and extend one's existing mobility. #
In fact, in the disabled community, we don't say that someone is "in" a wheelchair. #
We say that one "uses" a wheelchair. It is a tool used to increase mobility and independence. #
Myth # 8: Blind people can't see at all. #
No way! The term itself is confusing to those outside the blindness community, though. #
Only ten percent of people who are blind are totally blind. #
Most of us are what's called "legally blind," another confusing term that has little to do with the law. #
"Legal" blindness as a definition arose out of a need to establish a cut-off point for the allocation of scarce resources. #
Some folks in the blind community, like me, choose to be called "blind" even if they still have some residual vision. #
We seek to iron out a lot of the confusion by incorporating blind, legally blind, visually impaired, etc. into one brief term. #
Thus, "blind" means having a visual acuity of 20/200 or worse, or a visual field of 20 biopters, or worse, in the better corrected eye. #
This is the technical definition for "legally blind." The "legally" part doesn't do much to communicate the information, so we drop it. #
There's nothing wrong with the word "blind." I was born blind, and am proud of it! #
Myth # 7: Disabled people enjoy not having to work. #
No! No! No! First, many disabled people DO work all their adult lives.I worked for 12 years as a blind person, before I got MS on top of it. #
Would anyone really trade their health, arguably the most valuable resource any of us have, to avoid responsibility and be poor? #
Fakers aside (there's a ring of Dante's Hell reserved for them!), the vast majority of disabled people would and do choose to be productive. #
Many disabled people who aren't able to find a steady occupation do volunteer work or mentor others. #

Twitter Updates for 2010-05-18

Administrator — Tue, 18 May 2010 05:01:00 +0000

Whenever there is a list of tasks to be done or have done in the house where I live, my needs almost always get met last . . . #
and I have to wait the longest. After being on so many waiting lists for so many disability-related things over the years, waiting hurts! #
It makes little sense to me, but waiting for what I need (not want) has become physically painful. I get headaches, upset stomach, etc. #
I'm not saying that I think disabled people should always be put first, because that's not what I believe. #
I am saying, however, that we should never be put last. Somewhere in the middle would be nice. #

Twitter Updates for 2010-04-26

Administrator — Mon, 26 Apr 2010 05:01:00 +0000

I drink waaay too much soda. The other day on the news, a reporter demonstrated that there are 16 teaspoons of sugar in 20 ounces of soda. #
I had no idea there was that much sugar, and said sugar can contribute to chronic fatigue. #
Now, when I drink soda, I can taste the sugar. Eeeeeyuck! I am very grateful to have this information. #
More green tea for me! #

Twitter Updates for 2010-04-19

Administrator — Mon, 19 Apr 2010 05:01:00 +0000

I once had an OT who resented working with me because I am high-functioning and she had other clients worse off. #
Deal was, I wanted to _stay_ high-functioning and not end up like one of her other clients. #
When you are legally disabled yet still high-functioning, you can get caught in limbo between the "normal" world and the help you still need #

Twitter Updates for 2010-04-18

Administrator — Sun, 18 Apr 2010 05:01:00 +0000

Never be grateful only because you know someone else is worse off. #

Twitter Updates for 2010-04-17

Administrator — Sat, 17 Apr 2010 05:01:00 +0000

One of the worst things about being disabled is not being taken seriously. #
Managing a major disability or chronic illness is a full time job. #
I don't know if my live-in caregivers read my tweets or not, but the meal preps sure have been better around here the last week or so. #
Never be grateful only because circumstances could be worse. #

Twitter Updates for 2010-02-24

Administrator — Wed, 24 Feb 2010 05:01:00 +0000

We are having an especially cold winter, with snow today for the second time in four years. #
One would thing, "So much for global warming," but last summer was the sixth hottest on record here. #
Inclement weather challenges our independence. Too cold and wet, and we can't get out lest we risk further illness. #
Too hot, and a power wheelchair is apt to stop dead in the middle of an intersection. Our controllers overheat easily. #