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American
Council
of the
Blind
of
Minnesota
A QUARTERLY PUBLICATION OF THE AMERICAN COUNCIL OF THE BLIND OF MINNESOTA
P O BOX 7341
MINNEAPOLIS MN 55407
The views expressed in this newsletter are not necessarily the position of the American Council of the Blind of Minnesota. They are the views of the article's author. Product and service information is provided as a resource only and not as an endorsement of a particular product or service.
Jo Taliaferro, Editor
E-mail: soaringeagle7@comcast.net
Stephanie Hall
E-mail: sahall64@comcast.net
Bob Lockwood
E-mail: peggy_bob@msn.com
Carolyn Coby, Webmaster
E-mail: cs_coby@hotmail.com
ACBM Info Express - (651) 642-5003, our telephone news and information hotline was established by the membership in October 2005. Its purpose is to provide important and relevant information vital to the membership, quickly and efficiently between scheduled business meetings. Please keep yourself informed by calling regularly. You can also contact any board member using the information provided at the end of this issue of the Minnesota Memo.
Q. What inspired you to write the book, “Nickie's Nook: Sharing the Journey” and who encouraged you to pursue such a
challenge?
A. Boredom inspired me to write a book. I’ve been attempting to compile it for over a year. I had already written the
articles since most of them come from my blog, Nickie’s Nook. I decided to write the book on my own but others provided
moral support.
Q. What will blind people and/or friends and family gain from reading your book?
A. They will gain a greater understanding of how blindness, chronic pain, disability and other issues intersect which
will heighten their awareness of the challenges others face. Those who have blindness, chronic pain or dog guides will
learn new tricks, tips and coping skills from reading my book.
Q. If you had the opportunity, would you change anything?
A. No. There were several revisions so I’ve pretty much changed all I want to change.
Q. How are you marketing your book and how can people get copies of it?
A. My marketing efforts center around my blog, but I’ve also tried to advertise in a few blindness-related and church
publications. The easiest place to obtain a copy of my book is on my website http://www.nickiesjourney.info where regular
and large print copies are available as well as accessible PDF versions. Those who prefer a different electronic format
will receive instructions for obtaining their format of choice after purchasing my book. The prices are $9 for the
downloaded version and $16 for the regular and large print versions.
Q. What future plans do you have as a writer, if any?
A. I plan to continue blogging and writing for other future projects, however I do not know what these are.
Q. What advice do you have for people who want to get published?
A. I suggest that people study the various publishing options and don’t neglect self-publishing as a possibility,
especially if you desire complete control of your finished project. Self-publishing also seems to provide more options for
publication in accessible formats.
Editor’s note: For those unfamiliar with the term “blog”, it is basically a web journal where you can post articles, keep
track of thoughts and feelings and to which other people can post, depending on your preferences. It can be created from
scratch or set up using a service such as http://www.word_press.com
You can find information about audio described performances throughout Minnesota by calling: VSA arts of Minnesota, 612-332-3888 or 800-801-3883 (voice/TTY) or the MACT Hotline, 612-706-1456 or 800-290-2428 (voicemail box 4). Selected performances offer reduced admission prices for the patron and one companion. When you call a Box Office, confirm the service, date, time, ticket price and anything else you need to know (length of performance, smoking onstage, etc.). If you attend a show please share your feedback with the performing organization, describer and VSA arts of Minnesota. Here are a few places you may contact to request ASL interpreting, Audio Description and Captioning services.
I want to take just a couple of minutes to introduce you to the Victor Stream, the latest daisy player from Humanware. The below review is discussing version 1.03 of the software loaded onto the unit. Please consult http://www.humanware.com for the Victor Stream page, as this is new technology, and the product is being updated by downloadable software patches, which can be used to upgrade the unit. As a result, there may be features supported which were not available as of the writing of this article.
For those of you not familiar with Daisy, perhaps a brief explanation is in order. Daisy is a standard that allows producers of either text or audio to mark up their material so that people can easily navigate it to get to specific places. As an example, a newspaper produced in Daisy may be designed so that a person could move from section to section. When she finds a section she wants, she can select the section and then move from article to article. If the producer wanted more granularity, articles might be divided into subsections. Daisy also has the ability to have pages marked, so that a person could jump to page 330, and know that they were in the exact place a print reader would be, were he reading page 330 of the same document.
Though packed with features, the Victor Stream is extremely small: weighing only six ounces, and measuring a little more than four inches by two inches. There is a built-in mono microphone, so you can make voice recordings, and there is a jack so you can plug in a mono microphone if you wish. There is a built-in text to speech synthesizer allowing you to read books from Bookshare, as well as html and text files. The speech is currently only available in a female voice. Though the speech quality is usually understandable to me, I look forward to future upgrades which will include a male voice.
To store your books, audio files and recordings, you need a memory storage card. The unit can handle the older SD card format, or the newer HC SD card format. This means you can have as little as 256 megabytes, or as much as 8 gigabytes of memory depending on what sort of card you want to buy. The advantage of a memory card means there are no moving parts and the system is less prone to breakage. No memory card is included. Humanware will sell you memory for an additional charge, but far more competitive prices for memory can easily be found at your local computer store, or almost anywhere digital cameras or cell phones are sold.
The Victor Stream can play daisy text (such as that produced by Bookshare, or NFB Newslines,) or audio (such as that produced by the National Library Service). If you purchase a Stream, you can enroll in the National Library Service’s beta program for talkingbook downloads. The library says the average book is approximately 100 megabytes, and that an hour of audio takes approximately 11 megabytes of storage.
Though not currently supported, the Victor Stream is slated to handle RFB&D books, and books produced by audible (http://www.audible.com,) by the end of the year.
The Victor Stream comes with a USB cable, which allows you to connect the stream to your computer, and use file explorer to save files from your hard drive to the stream. Humanware recommends you buy an external card reader, as transfer speed is greatly increased if you take the card out of the Stream, and use the dedicated hardware for data transfer.
The Stream is also able to play files in a variety of “standard” formats, such as mp3, and wav. It supports playlists, and allows you to play files either sequentially or randomly. Humanware reports playback on one battery charge will last up to 15 hours but this may vary depending on a variety of factors.
Below is a list of features that makes Victor Stream a powerful book reader:
Though I truly love this device, and would recommend it to anyone, not all is perfect.
To sum up, this is a device with a lot of very useful features. The support of e-text and audio books will give you hours of reading from a variety of sources. Navigation features will allow you to move within your text quickly, and bookmarks will provide an excellent method for students to mark up text for future study. The inclusion of features to play MP3, WAV, and other formats make this a small and portable media player as well.
For those of you who did not attend the 46th annual convention of the American Council of the Blind in Minneapolis, all I can say is, you missed it. This had to be the most diverse and well attended convention I have been to in a long time. The hotels were easy to get around, the meeting rooms were easy to find and the hotel staff was beyond excellent. The number one comment I heard over and over again, was that people had never seen so many volunteers at one of our conventions before. They were everywhere. They were plentiful, helpful and so happy to be a part of this new experience.
As chair of the Host Committee, I learned about some disconcerting actions of our local NFB chapter regarding recruitment of Lion volunteers for our convention. Although the host committee ignored these actions at the time, I feel I can share them with you now that the convention is over. In my opinion, this is just one more example in which NFB attempted to impact ACB in a negative way.
Serving the convention as host committee our responsibilities are plentiful. One major task is to enlist the help of volunteers by writing letters to literally hundreds of civic organizations, employee associations, state and other government employees as well as to Lions Clubs. We clearly and adeptly point out the reasons for requesting volunteer assistance. A major reason is that by enlisting the help of the local community we offer opportunity for building positive relationships among us as blind individuals, those who live next door to us, work alongside us, and those who walk next to us on the sidewalks every day. Most have never interacted with persons who are blind or visually impaired so they may have false assumptions about the capabilities of blind people. Volunteers at national conventions gain an appreciation for the ways we move about in our own environment and learn unfamiliar places. We share with them a glimpse into our own world, a world that many of them cannot imagine.
Letters requesting volunteer support went to the various Lions Clubs in Minnesota. Each individual club responded positively and was happy to be asked, except one local Lions Club. Instead, we received a letter back, which had attached to it, a letter written by one of their members, an older blind NFB member. She urged them not to send volunteers for our convention by stating, “…Lion participation in the ACB convention will not be helpful to blind people overall. The ACB has a glass-half-empty philosophy. I and the National Federation of the Blind, on the other hand, has a glass-half-full philosophy. The ACB's beliefs lead to actions that are harmful to blind people.”
She listed two primary reasons; all typical ones that are generalizations, and are as short sighted as they are archaic. Letters such as these rant and rave and go on to such a degree, they come across as having little effect except to reflect very poorly on the author as being out of touch with reality. For ACB to be interested in reaching out to the sighted community to build relationships that are more productive hardly seems to demonstrate “beliefs that lead to actions that are harmful to blind people,” as she states.
She goes on to state, “The ACB further provides a negative image of blindness to the media and public by their too-frequent portrayal of blind people as pitiful, helpless, and dependent upon the charity of sighted people.”
What a total shame for her own club members. It certainly did not harm us in any way in the process; it only prohibited those particular Lion members from getting an education about blind citizens in their own city.
By inviting volunteers to serve, they learn firsthand what issues are important to blind individuals and realize that life doesn't stop just because we can’t see. Through their service, they see for themselves the skills we have, the work we do and share an appreciation for activities which are a part of our lives. They view us as capable and competent, not asking for pity or charity.
Here’s a recipe you’ll be DYING to try!
Ingredients:
4 large packages lemon-flavored Jello
8 cups boiling water to dissolve Jello
4 cups pineapple juice, from fresh overripe pineapples
3 bags mini marshmallows, soaked overnight for softness
2 8-oz. packages cream cheese, softened
2 jars Hellmann’s mayonaise at room temperature
1 bottle, black food coloring for each pupil
Other pools of food coloring depending on the tastes of your guests:
Trays to make ice cubes about the size of a skinless grape
Red syrup for garnish
Use black plates
You’ll be aghast at how many this appetizer serves!
Do not ever try to be a benevolent host at your Halloween party. Let them smell the eerie flavor of the food.
Cook up scary eyeballs. Dissolve lemon gelatin in water and add marshmallows, pineapple juice, and cream cheese to it. Cool the mixture and fold in mayo. Then pour the mixture in round ice cube trays to get the eyeball shape. Use liquid food coloring for the decoration. Be creative. Use black food colorings for the pupils and dip the ball in a small pool of food coloring to get your desired colored irises.
You can hear the scream of your guests as you place a bleeding eye ball on their plates. It gives out the red, glossy effect, fruity smell, taste of sweet blood and a cold, wiggly touch. Add red syrup to get the impression of oozing blood!
Rebecca Atkinson is going blind. An experimental therapy could offer her the chance to see again - but would she take it?
Earlier this year, doctors at Moorfields Eye Hospital, London, began the world's first gene therapy trials to treat 12 patients who have Leber's Congenital Amaurosis, a condition that causes progressive sight loss. Following successful animal trials (said to have restored the vision of blind dogs so they could navigate a maze without difficulty), it is hoped that the technique, which involves injecting working copies of faulty genes directly into the retina, will prove equally effective when carried out on humans.
The first viable treatment for blindness is twinkling on the horizon and as one reader said on a national newspaper message board discussing the trials, "the possibility of being able to give improved sight to people with visual impairments is a great development for the human race." but what of the people we seek to repair? Those who have been born blind and those, like me, who are losing or have lost their vision. Is this what we have been waiting for? Is it "a great development for the human race", or a step forward in the eugenic quest for an uber-race, free of imperfection and rid of the unease about disability that nestles quietly in society's pocket?
For the past 13 years I have been losing my sight, due to a genetic and incurable condition called Retinitis Pigmentosa (RP). RP causes the photoreceptive cells on the retina to die off, causing, in my case, tunnel vision. I liken it to looking at the world down the middle of two toilet rolls. My central vision remains intact, but where once was peripheral vision now float only my thoughts. In time these loo rolls will shrink to knotholes and then pinholes and then possibly nothing.
In the early years after my diagnosis, blindness remained a repulsive and terrifying concept. Every year I would visit the doctor and he would say the same thing - that I must live and plan my life with the certainty that blindness was inevitable. And so, slowly over time, that is what I learned to do. But now the advent of gene therapy has pushed open a chink in the door. Disabled people have long asked themselves the hypothetical "would you be cured if you could?" question. Now, for the first time, there is a chance, albeit very small, that maybe one day I might actually get my sight back. Hurrah, you cry. I must be thrilled. Actually, I am a bit confused.
It is easy to assume that all visually impaired people will be hammering down the doors should gene therapy prove successful. But to say this is to assume that a blind life is lesser and that all blind people really want to be sighted. They don't. The first blind man I ever met, who also happened to be my boss at the time, is one of them. I recently asked him if he would have gene therapy if he could. No, came his reply. Because, he tells me, regaining sight is more than just seeing again. There are issues of identity and culture at stake too. "As the blind-from-birth son of blind parents, I am, in part of my soul, defined by my blindness, “he explains. "It directly equates to ethnic or racial origin. If you give a black person the choice to be white there may well be significant advantages in such a deal: more access to better jobs; freedom from the shackles of ignorant prejudice; in short, a step closer to equality. But I’d bet most would turn the offer down flat.
But what if, unlike my old boss, you haven't always been blind? What if, like me, you grew up with full vision and have seen all the cliché-ridden things that those born totally blind are pitied for never having seen - the sunset, your own reflection, the look in your lover's eyes. What if your soul is sighted, and then you go blind? You will cry and wonder why. You will hope and pray. You will wish it would all go away. But the longer your sight has been on the slide, the more it seeps into every crack of your psyche - until one day you are no longer the "sighted person" who can't see any more. Somehow, strangely, in the dead of night, your identity has rolled over in bed and you wake up and get out the other side a "visually impaired person" - and it feels like part of you. It doesn't happen overnight, and perhaps it doesn't happen to all who sail the strange seas of sight loss with me. But for me there came a point when impending blindness was no longer my alien but my friend. I had had my time as a sighted person. I had seen the world through my eyes. Now it was time to touch it and smell it and hear it.
When you lose your vision you have to re-learn the sorts of things that will allow you to survive on the planet, such as crossing the road without being flattened. Next you must tackle the real problem and learn to deal with the attitudes of others as they morph around you. Misconceptions start to spout from even your oldest friends' mouths because negative attitudes about blindness permeate us all. You are about to cross over into the dark side and see what wriggles and writhes on the underbelly of society. Folk will see you as the sufferer, the pitiful, the afflicted, the subhuman - that's you, yes, you. If you use a cane or a dog, people will stare as you walk down the street. People will assume you are more lacking in intelligence than your sighted counterpart. People you have never met before will ask if you want children, and if you do, they will ask if the kids will have the same condition that you have, and whether that is right or wrong. Welcome. Your reproductive autonomy is in the docks of the moral courts of the nation's minds.
So if this underbelly is so wretched, surely if the time comes when the doctors are looming forth with a needle containing the working version of my faulty gene and heralding the promise of a new day, one with a bright sunset and me at the wheel of a fast car, I’ll take it, right? Anything to escape? No. Saying yes to seeing again, even for someone who wasn't born blind, isn't easy. The repercussions would ripple beyond my eyes into my friendships, my work, my relationship. Would I retain the unity I have with my disabled brethren if I could see? Or would I have different friends, the type who fall by the wayside now because they are not aware or empathetic, or are too aesthetically obsessed? Would I lose the friends with whom I have nothing in common but who remain in my phone book because they get the blindness thing? And would it be right to dump them just because I can see and don't need their empathy any more? If I stepped into the pool of "normal people" again, where would my identity go?
The kernel of who I am has been sucked into a new body; now it would have to be sucked back into the old one. And what of my relationship? Would we stay together or would I run off to do all the things I never got to do before? There is a high rate of separation among couples where one person gets a guide dog for the first time. Why? Because suddenly they can do things on their own again. This new-found independence shifts the balance and cracks appear. If this can happen with a dog, think what could happen with a pair of fully working eyes and a car. Going blind isn't a smooth ride, though. It comes down and squishes you under an insurmountable weight of grief and disbelief. It is limiting, frustrating and changes the way you do many of the things you used to enjoy - now you must dance with the light on and drive from the back seat. But like the affirmation of near death, it affects more than just your physicality. It gives you a unique perspective. It is a grand experiment that most don't get to try; to observe as your brain rewires and watch as the human body adapts in infinite ways.
When my vision began to get worse, I bumped into everything in my path because I was still careering down the pavement at the speed of someone who could see. As my mind caught up with my eyes, I changed the way I walked - with more caution and less speed - and the perpetual bumping and tripping stopped. Losing your sight is not like just shutting your eyes. The loss is so gradual that as one sense dies others grow. Suddenly you can smell the world and sense when someone is standing out of your line of vision. Your brain grows on the inside and things on the outside start to matter less. I get to live my life twice over in two different bodies (the sighted one I used to have and the partially sighted one I now have), and with that comes the privilege of spying on the world and its intricacies from multiple vantage points. It's a cliché to say that disabled people are nicer. It is incorrect, in fact. But for me, vision loss has made me more empathetic and more open-minded. I have to take so often that I give more freely. When you rely on friends to take you down Oxford Street or a stranger to get you across the road, you think more consciously about what you give back and battle with the feeling that you need them more than they need you. But, strangely, I am happier like this than if I had carried on down the middle lane to mediocre city never having seen or felt real loss and known how to appreciate the good things around me. I have met people I would never have met had I been sighted, and we have been joined together by the common bond of disability (and there is no glue that sets as hard as that squeezed from the pores of a minority).
When part of your body starts to die you feel what it is to be human. You wake up from the slumber of being just another idiot with an iPod because you are forced to work out the bigger questions. Or at least ask them. Why am I here? Why is this happening? You are alert to the immediacy and fragility of your life. You know that the choices of the modern age do not and can not extend into every realm of your life. You can't choose to see (at least not yet). This is it. The upshot? You live in the moment. You settle for your lot and love it.
The concept of sight loss as a positive thing is an elusive one. It is hard to grasp when you have experienced it; and even harder to grasp when you haven't. It is not something I would have chosen, but it is not something I wish hadn't happened. Would I like to stop it getting worse? Yes, because I’m only human and sometimes I lie awake worrying how I’ll cope when it's all gone. But would I like to have gene therapy and see perfectly again? Five years ago I’d have said yes. Now I’m not sure, because if this experiment of going blind has taught me anything, it is that what you lose in one place you gain elsewhere, and while a blind life is different to a sighted life, it is not lesser. And ultimately it is better than having no life at all.
Minnesota Low Vision Store is excited to announce a new location in Minneapolis. The medical director of the Phillips Eye Institute asked that we open a store there to work with the vision rehabilitation people already in place. Waunita Clare will be the person in charge. Waunita used to work for the low vision store before she was laid off. She has severe vision loss but that does not stop her from working extremely competently. Her ours will be 10-3 Monday through Thursday. Location: 2nd floor at the Phillips Eye Institute 2215 24th St. S. Just south of Franklyn and Park Ave, Phone: 612-775-8867.
There is a wonderful free service for blind people, and all you need is a telephone line and a fax machine. You can fax any document, whether it's a handwritten letter, a recipe, typed correspondence or a knitting pattern and a volunteer will call you back and read it to you. You can either go to the website, or you can call a toll-free number to hear the website's information. IMPORTANT: When faxing, the first page must be a cover page that contains your first name, plus a voice callback number. This is a free service but donations are accepted. Each of the words in the web address has the initial letter capitalized, so the address reads as follows: http://www.ReadThisToMe.org. The audio version of the website is: (877) 333-8847. To fax a document, it's the same number, except the final digit is an 8: (877) 333-8848. This is super for those who do not have an Optacon or a scanner and for those pesky documents that simply cannot be read with a user-friendly reading device. The service is only available in the U.S. because the volunteers call back at their own expense. TRY IT! It Really Works!
Janet Dickelman, President
St. Paul, MN
Ph: (651) 698-5059
E-mail: janet.dickelman@comcast.net
Michael Malver, Vice-President
Minneapolis, MN
Ph: (612)< 673-0664
E-mail: mmalver@visi.com
Sue Lindgren, Secretary
Minneapolis, MN
Ph: (612) 605-4526
E-mail: slindgren@mindspring.com
Juliet Silvers, Treasurer
Minneapolis, MN
Ph: (612) 824-2131
E-mail: jsilvers03@comcast.net
Chris Bell, Director
Minneapolis, MN
Ph: (612) 859-4938
E-mail: christophergbell@comcast.net
Carolyn Coby, Director
Forest Lake, MN
Phone: (651) 464-5935
E-mail: cs_coby@hotmail.com
Bob Lockwood, Director
Minnetonka, MN
Ph: (952) 932-7269
E-mail: peggy_bob@msn.com
David Moseman, Director
St. Paul, MN
Ph: (651) 340-4217
E-mail: moseman@comcast.net
Jo Taliaferro, Director
Minneapolis, MN
Ph: (612) 722-1195
E-mail: soaringeagle7@comcast.net
Ken Rodgers, Ex Officio Member
Minneapolis, MN
Ph: (612) 236-4115
E-mail: kenrodgers@comcast.net
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Copyright © 2008 American Council of the Blind of Minnesota kenrodgers@comcast.net |