Momentarily sad, and at the extreme risk, of being repetitive, I am frustrated. Why? Let me just state my sincere appreciation for having access to an AAC device, also known as a speech generation device. Without it, I would be trapped in a heinous episode of Twilight Zone or Black Mirror, having a lot to say and not be able to say anything. And in this day and age of technological "miracles". Heinous.
I am one of the fortunate ones, whose insurance covered my device, with my diagnosis. I have A.L.S., also known as amyotrophic lateral sclerosis, or Lou Gehrig's Disease. It's a terminal illness, but before it kills us, it robs us of everything we have and everything we are. The ability to walk, raise our hands, dress and feed ourselves, talk, gesture, and, ultimately, breathe. But I'm here to discuss the ability to discuss, to voice an opinion, to rise up "as it were" and be counted.
I am a fully cognizant individual, informed, college-educated, and I matter. To be "locked-in", a prisoner in my body, is criminal. My augmentative and alternative communication (AAC) device allows me express opinions, needs, desires, and, ultimately, myself. I would be miserable and, likely, dead without it.
I have a wonderful machine, a Tobii I-series, I-15, to be precise. I bought it back in 2013, just before the appalling Medicare shut-out, which denied this life-saving device to so many who needed it. But I am sad and frustrated, as I stated. I paid to have my device "unlocked", meaning that I use my device to, also, access the internet. And, yet many of my favorite websites do not function properly, or fully.
I'm not talking about porn sites or fringe anti-social sites. I just want to be able to keep up with friends and family, because, God knows, they are not wanting to fight traffic, spend time and money to visit a woman who cannot keep up on a conversation, and reminds them of their own fleeting mortality. I'm just saying. I'm talking about FaceBook, Blogger, Yahoo, PatientsLikeMe, Dictionary, KCLS, (public library), GoodReads, and Shutterfly. Whoa, I just realized, I am boring!
On FaceBook, people don't understand why I don't engage, like I used to. I used to "Like" pictures of their puppies, kids, grandkids, cute sayings, funny jokes, etc. Nowadays, I cannot select the Like button, even though I try up to four times, waiting for the slow network in between selections. Same deal on comments and share. And most of the time I have to forego using private messaging, notification, and friend requests.
On Blogger, I am unable to select different fonts, change font sizes, choose different font properties, choose different margin justifications, nor cut, copy, and paste to edit efficiently. Do you know how difficult it is to get your thoughts out, cohesively, the first time, or just be satisficed when you know damn well, you could get your point across better, if only you were able to tweek it, just a bit?
And let's have us a discussion about Shutterfly. This is the website I chose to house all of my photos, so I could have access to them when I could no longer, physically, lift a mere piece of paper. Imagine my heartbreak at never having access to them again, because my AAC device does not recognize any part of it!
You are starting to get a taste of what I go through each day, but not really, these are just the things that I know I must live without. Using eye gaze technology, I must choose different functions by the numbers. Not a big deal, except that the numbers change even AFTER I have made a selection. Making function selection a moving target. Annoying.
And we shall never know how many blogposts have been vaporized out into the ether, due to miscues on the part of my AAC device. Heartbreaking.
Of course, you are also, blissfully, unaware of the inherent shortcomings of my Tobii. There is: no text prediction to speed input; no cut, copy, and paste to edit; no button nor shortcut to move through words, nor sentences.
I am one of the fortunate ones, whose insurance covered my device, with my diagnosis. I have A.L.S., also known as amyotrophic lateral sclerosis, or Lou Gehrig's Disease. It's a terminal illness, but before it kills us, it robs us of everything we have and everything we are. The ability to walk, raise our hands, dress and feed ourselves, talk, gesture, and, ultimately, breathe. But I'm here to discuss the ability to discuss, to voice an opinion, to rise up "as it were" and be counted.
I am a fully cognizant individual, informed, college-educated, and I matter. To be "locked-in", a prisoner in my body, is criminal. My augmentative and alternative communication (AAC) device allows me express opinions, needs, desires, and, ultimately, myself. I would be miserable and, likely, dead without it.
I have a wonderful machine, a Tobii I-series, I-15, to be precise. I bought it back in 2013, just before the appalling Medicare shut-out, which denied this life-saving device to so many who needed it. But I am sad and frustrated, as I stated. I paid to have my device "unlocked", meaning that I use my device to, also, access the internet. And, yet many of my favorite websites do not function properly, or fully.
I'm not talking about porn sites or fringe anti-social sites. I just want to be able to keep up with friends and family, because, God knows, they are not wanting to fight traffic, spend time and money to visit a woman who cannot keep up on a conversation, and reminds them of their own fleeting mortality. I'm just saying. I'm talking about FaceBook, Blogger, Yahoo, PatientsLikeMe, Dictionary, KCLS, (public library), GoodReads, and Shutterfly. Whoa, I just realized, I am boring!
On FaceBook, people don't understand why I don't engage, like I used to. I used to "Like" pictures of their puppies, kids, grandkids, cute sayings, funny jokes, etc. Nowadays, I cannot select the Like button, even though I try up to four times, waiting for the slow network in between selections. Same deal on comments and share. And most of the time I have to forego using private messaging, notification, and friend requests.
On Blogger, I am unable to select different fonts, change font sizes, choose different font properties, choose different margin justifications, nor cut, copy, and paste to edit efficiently. Do you know how difficult it is to get your thoughts out, cohesively, the first time, or just be satisficed when you know damn well, you could get your point across better, if only you were able to tweek it, just a bit?
And let's have us a discussion about Shutterfly. This is the website I chose to house all of my photos, so I could have access to them when I could no longer, physically, lift a mere piece of paper. Imagine my heartbreak at never having access to them again, because my AAC device does not recognize any part of it!
You are starting to get a taste of what I go through each day, but not really, these are just the things that I know I must live without. Using eye gaze technology, I must choose different functions by the numbers. Not a big deal, except that the numbers change even AFTER I have made a selection. Making function selection a moving target. Annoying.
And we shall never know how many blogposts have been vaporized out into the ether, due to miscues on the part of my AAC device. Heartbreaking.
Of course, you are also, blissfully, unaware of the inherent shortcomings of my Tobii. There is: no text prediction to speed input; no cut, copy, and paste to edit; no button nor shortcut to move through words, nor sentences.
Comments
Post a Comment