Notes From The GiaSphere The many facets of being Gia

• 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. #

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

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• 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. #

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• 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. #

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• 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. #

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• 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! #

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

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• 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. #

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• 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. #

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