News, updates, and happenings with the Kragnes family: Phil, our Seeing Eye Dogs, and (me) Rebecca.

Archive for June, 2013

personal and universal accessibility battles

I have been asked to write about how I regained access to my Facebook Account after as a blind person I failed the test of identification of photos my FB friends. I had a friend take a picture of my ID, sent it to the FB team, and had my account restored.

The sad truth is that I don’t know why my account was blocked, so I didn’t learn from the experience. When my account was restored, I was sent a list of things I could do to not have my account blocked again. Of course my butter-fingers inadvertently hit the delete key on it, but they were pretty basic things like having one account, having a profile photo (which I think I do), using my real name and birthdate. Nothing stuck out at me and had me thinking, “Oh that’s why my account was blocked! Let me fix that.” The next FB task is to figure out this trusted contact thing, so someone can restore my account if need be. Once again, it certainly wasn’t obvious to me, so after combing through it again, I’ll probably have to get a sighted person to look at it when I can and meanwhile hope I don’t do whatever it was I did to get it blocked the first time.

Speaking of having a sighted person available, Lainey Finegold has written a very nice piece about everyone asking a question I hear often. “Can’t you get a sighted person to look at that for you?” People like to think my husband is sighted or that we have a care taker always on-hand. We do have a volunteer reader who comes once a week. We try to wait and have a list of things ready for her besides our mail, but some things can’t wait. Plainly and simply, sometimes this question is a cop-out/excuse *not to provide something in accessible format. Obviously Lainey’s piece advertises her services, but it still makes some very good points about this plaguing question. Read it here.
“Can’t Someone Read that to You?: Dissolving Stereotypes of Blindness: http://lflegal.com/2013/06/blind-privacy/

Lainey has a second post about a worldwide battle blind and visually impaired people have recently won. I put links to the petition on my Twitter and Facebook hours before my FB account was blocked. There’s a part of me which wonders if that might have something to do with it, but anyway … Blind people all over the world are now going to have access to more books. Publishers and other corporations tried to block it by saying if it was available in audio, we should buy it. First, Audio books are more expensive than print. Second, this would be like saying to all of you sighted people that all libraries will close. Stevie Wonder even got into the act, which of course I love. There’s a direct link to his comments from Lainey’s page below.
Historic Copyright Victory for Blind Readers:
http://lflegal.com/2013/06/wipo/

I’ll close with one more little battle I’ve won. In January, I wrote about a wonderful new app for my iPhone on which I could write in braille. I loved it, because typing with one finger isn’t my thing and goes very slow. One of the big annoyances was not being able to use it with audio (usually music) in the background, so every time I wanted to use it, the music had to stop. I have been waiting none-too-patiently for this app to update and hadn’t heard anything for months. On Wednesday a very similar app was released called MBraille. MBraille can be used successfully with audio plus it allows for contracted or grade II braille. I can post directly to Twitter, Facebook, E-Mail, or text from it and can paste into other edit fields. It’s not advanced enough to have a spell checker yet, so I’ll be writing these more permanent blogs on the computer. Still, this is such a great step forward!

June 25th soulful reflections

On June 25, 2009 Michael Jackson passed away. I know this isn’t a historical thing for many people, but as one of his many fans, I remember where I was. My husband called me at the Malt Shop where I was doing a substitute gig. I did some soft MJ piano renditions that night and some more powerful versions this past Sunday. In neither case did I care about tips. I was just doing it more for myself.

Saturday my friend Chuck Brady did a special replaying some highlights of the Memorial Service and lots of MJ music. I’m not sure where I’ve been, but a friend listening with me happen to mention that MJ’s 16-year-old daughter Paris attempted suicide a couple weeks ago. From reading her tweets, she was under a lot of normal teen pressure but also seemed to be maligned in the media regarding a trial of the family suing a company for Michael’s death. I was sad to hear of her suicide attempt, because her father was a role model for the teen-aged me — keeping on keeping on despite how he was ridiculed and considered odd. My late teens were turbulent and lonely, and there were many times I felt misunderstood and was suicidal. The closest I ever got was lining some pill bottles along the bathroom countertop. Many automatically thinks it’s the blindness which was isolating, but it’s probably more accurate say that I was different from your average white rural Iowa kid. I liked all kinds of music — including the beloved classic rock — , but black singers were and still are probably my favorite. They were called the n word by older and younger generations, and civil rights and cultural differences were something we barely touched on in school.

Sunday afternoon I had a vivid dream about a group of kids who also liked MJ and soul music in general. I was a teen as well in the dream but wasn’t shy about trying to play their favorites (because they were mine too.) I have a few contacts with Michael Jackson fans, but this dream makes me think I probably should solidify an MJ fan community in my life.
When I first got on the net in the 90’s through the early 2000’s, I had a community of MJ fans as friends both locally and internationally. Some of these people were less rational than I would have liked preferring to believe Michael didn’t make mistakes and that it was perfectly normal to stand outside his hotels and run off tremendous credit card bills following him on tour. These are probably some of the same people who kept yelling and cheering at (in my opinion) inappropriate times during the memorial service. I was a fan of the music and the messages and never believed he was a sexual predator. However, as an adult, I acknowledge that like everyone else, he had a dark side and made bad judgment calls.

June 25th, 2013 was the release date of the latest India Arie album Songversations. I first heard her voice on a Stevie Wonder song and saw her in concert on Stevie Wonders birthday May 13, 2008. I vilified Stevie growing up, because I didn’t want to be associated with loving a stereotypical blind musician. I also think it takes a more mature ear to understand his music and appreciate where he’s coming from in some cases. His lyrics didn’t get through to the Politically conservative kid (one of the ways I *was like many rural Iowa teens), but it was only after discovering I was liberal did the messages resonate. Stevie is probably my favorite living singer, but India is not far behind! She credits Stevie wonder for being one of her biggest inspirations, and his influence in her music is palpable. Like Stevie (and sometimes Michael), she has a wide voice range, completes impressive agile vocal runs and presents precise overdubbing harmonies. her albums are filled with rich lyrics,. Lyrics on her latest range from introspective to inspirational .. from searingly sensitive to socially conscious … addressing everything from relationships to religion to patriotic gratitude. India is to the guitar was Stevie is to a keyboard or harmonica. Like her mentor, she brings in other styles of music including some smooth jazz and romping regae.

June 25 will probably be an ouchy day just like November 18 (the anniversary of the day I had to put my first Seeing Eye Dog down), but I am glad this India Arie album will shine light on it.

blood flow, Colonoscopy, Electricity, and Facebook

Aside from the usual chaos which takes place on a weekend when I play both Masses at church and the Malt Shop, this weekend had some other surprises. But the “fun” really began on Wednesday. Phil was in the hospital from Wednesday through Saturday to get some medication through a pick line which started more blood flowing throughout his body. Because there’s only one vein feeding his hand because of the now-closed-off graft, more blood needs to move to the finger he hurt a couple of months ago in order to heal it. Since getting home, his finger has felt better than before, although he still has to run to pain killers when it’s at its worst. He continues on an oral medication to keep blood flow moving, and there are plenty of jokes afoot! The medication is a generic form of Viagra. I let Phil say it publicly on Facebook first. One of the things which made this hospitalization so much easier was Garron being allowed to stay with Phil. Staff fell in love with him, and there was very little if any trouble scheduling people to take him out. Our current reader Sarah Grace called to let us know she had a cold before Phil was admitted, and fortunately, our past reader Linda was having a relatively good day and could substitute at the last minute Wednesday evening.

When reading the instructions for the colonoscopy preparation, we discovered I could have Pepsi as part of my clear diet. Linda is also a Pepsi fanatic like me, so she picked up some with my supper. I had my “last meal” before the prep from MacDonald’s. The night before, I attended a sing along with some friends. We stopped at Mickey D’s beforehand and had their great new quarter pounders! It was so good I opted to have a repeat on Wednesday. I hardly ever eat MacDonald’s so it was a treat.

A friend Eric visited Thursday afternoon, and that helped the clear diet go down easier. The only thing the nurses lied about was that the process didn’t sour the stomach. Luckily, the peppermint tea helped that settle down without negating any other affects

I talked to Phil very little while he was in the hospital, and every time I did, I kept forgetting to ask about where to find the cane. Because we use our dogs the majority of the time and are relatively the same height, we have one cane between us. Another broke, and since usually only one of us needs it at a time, we just haven’t bothered to replace it. . Luckily, our friend Bonnie helped with transportation to and from the procedure, and another friend Michael puppy-sat. The nurses at my hospital told me they wished I would have brought Zane with me, and given how things were, it might have been OK. I was under pretty light sedation and don’t think I slept at all through the procedure. Aside from some minor cramping, there was little pain. Everything is clear, and I just need to eat more fiber. The doctor who removed my polyp is leaving for Chicago in a couple months, so it was probably fortuitous that another doctor did the procedure. He was nice and explained things very well.

I asked Michael to stay a while after the procedure, as I was to have a responsible adult around after sedation. He brought croissants and and an awesome salad he makes. We provided the beverages and the mint Oreos. It started to storm around seven thirty, and we lost power around eight until Saturday morning. Neither of us thought about charging our phones for this eventuality, so any calls had to be made from the wired phone in the basement. The cab company’s computers were down, so my friend spent the night on our couch. His Black Lab was afraid of the storm, paced, and nosed me and Zane when he’d come see us. I didn’t sleep much anyway without the use of my CPAP to keep me breathing easily. Power was restored on Saturday around ten thirty, and we listened to the last part of a Michael Jackson special. Phil arrived home about three thirty that afternoon, and Michael left around four.

Friday morning before my colonoscopy was also when I found out my Facebook was blocked for “suspicious activity”. For some reason, someone didn’t think I was a real person. I kept doing audio capsha’s throughout the weekend, and despite mastering more than a few of them, another would appear. Sometimes it was just a visual capsha, and obviously that didn’t work. I hoped asking a friend Dwight to help over the phone would be a quick fix, but it turned into a longer haul than either of us anticipated. After he completed the visual capshas, Facebook tested my identity by presenting him photos of my friends with multiple choice answers. Because he had to describe them for me, we took some time getting through them not knowing that the test was timed. He and his daughter came over and took a photo of my photo ID. I attached that file to a message to the Facebook team, and I hope this will be evidence enough I am a real person. I have no idea when access to my account will be restored.

Ornery Week

First an update on Phil. Monday’s doctor appointment
turned into a half day seeing at least three doctors. An MRI was ordered and occurred on Friday. He has follow-up appointments on the MRI on Wednesday. I really hope they figure something out, because his finger throbs. Every little bump of it just sends him into agony. If he’s taken a pain pill (which produces motion sickness many times) it’s only crying. Without the pain pill, it’s screaming.

This was my week for being ornery. Most of the time I try to be gentle and quiet about things and avoid fights where and when possible. Not this week.

I had a little adventure on the way to the doctor. Our block is usually smooth sailing, but ahead of us on the corner where we needed to turn, I heard a jingling collar and what sounded like voices of a mother and daughter calling Cocoa. Then I heard growling. Every guide dog attack story ran through my head, and the dog sounded like it was getting closer to us. Had I known they were both kids, I never would have raised my voice the way I did, but I asked them to get their dog under control right now. I also said the dog should be on a leash if it wasn’t. Not diplomatic in the least. The kids reassured me the dog was on the leash, and a man yelled out the window that it was and to stop screaming at his children. Note to self. Not a good way to impress who appear to be new neighbors. I did apologize, but at first I panicked thinking of all of the working relationships which have been wrecked. It’s not just physical injuries. Many times it’s just psychological, and a dog just won’t work again. This is especially problematic if it happens near home. To add insult to injury, this little stop made me miss my bus, and I was a little late getting to the doctor’s office.

My doctor’s visit brought up one of the very few not-so-friendly debates between Kragneses. We have a running joke that if you’re a Kragnes, you’re right. The only question is what happens when we disagree. For a few weeks, I’ve been noticing that when I lie on my left side, my pillow speaker (for reading audio books) gets quieter within a few minutes. In the past I’ve been known to have a lot of wax in my ears, and I suspected that might be what was going on. Only thing was, there was some pain and itching too. That might have been the final push to get to the doctor. Because it might be an infection, it was ok to go.
There are home remedies for wax in the ears. Growing up, it was cu-tips, sometimes with water. And I swear, every time I went to the doctor, they would warn against it. My doctor yesterday warned against it again saying it has the potential to puncture something. I talked about Phil’s home remedy which is successful for him. He mixes vinegar and alcohol and uses a syringe to squeeze the mixture in his ears. Lavages work for me, but warm water under a lot of pressure applied with something a little thicker than a toothpick and a doughnut-shaped thing which limits how far into the ear it can go are more successful for me. Side benefits are that it feels good and doesn’t smell bad. It also helps to have a sighted nurse able to shine a light to see the angle needed to get the wax. Phil feels I trash his method, and I do. But if we could just agree to disagree, I could settle down. Trashing is not a one-way street. He contends that doctors simply want our money so discourage anything which might keep us away. If I’d just do his thing every few months, I might not have to go in.

So when I complained of the obstruction, his response was, “there are vinegar and alcohol in there. He contends I haven’t tried it, but I have. Based on my doctor’s and nurse’s responses, I’m not likely to try it again. They think it will dry out the ear with the acid being a problem. According to Phil’s doctors, the mixture brings the PH balance back into line in the ear. I suspect these things might address different problems or it’s simply different strokes for different folks. Both ears needed attention, I can hear much better after my treatment, and it’s a good thing. On the way home the rush hour traffic was absolutely brutal, and I needed every last bit of hearing plus Zane’s skills to get across Hennapin Avenue!

Next week is the lovely colonoscopy. If you can believe it, they called yesterday and wanted to reschedule it yet again, because the doctor had another conflict. I switched to a different doctor within the same practice at the same time. I just want to get this nonsense done.

a very different week than planned.

Sunday night was above average at the Malt Shop, despite getting the news last Friday that there would be no announcements reminding people to tip if they appreciated the music. It may not be apparent to the reader just how hard it was for me to make the request. I try not to be the stereotypical, egotistical musician, and in fact, I’m probably too much the opposite. Selling myself or tooting my own horn is extremely difficult for me. Though I don’t have to rewrite the basic note each time, sending out information to people who don’t know me and haven’t asked for it (like a cold telephone call) highlighting what I do is very psychologically challenging for me. That’s why it’s great to have a constant gig like the Malt Shop — so I can let people know I’m a regular –, and they can hear what I do for themselves. I had one person thank me for educating her about the etiquette of tipping musicians on this blog, so maybe that’s why I was supposed to go through that business.

Because of the denial of the request for announcements, I’ve decided I have to distinguish myself from the employees (whose Malt Shop shirts are their uniforms) by making sure I do not wear a Malt Shop tee-shirt as I have tried to do in recent weeks. When talking to people about this whole thing, it’s become apparent people assume I am being paid like any other employee, and wearing something different may go toward minimizing this assumption. I’ll wear the tee-shirts other places to advertise that I’m there on Sundays. Frankly those wonderful lime green shirts were three of the most comfortable shirts for playing. The bright color gave me confidence, and there was no stiffness and lots of room to move in them.

Speaking of green things, my absolute favorite lime green top with sequins all around the neckline and a jacket of a similar color have been stained badly. A friend took them to a cleaners to see if they could get it out, but having heard nothing, I don’t think I’m in for good news on that front. It’s only clothing, I know, but chances of finding things in that color and style again are pretty minuscule.

The Doctor’s office called to postpone my colonoscopy, as my doctor has a conference not previously recognized on his calendar. The bad news about that was having to set a date all over again making sure the one we schedule works for the friend planning to drive me to and from the appointment and my friend with his Black Lab who volunteered to watch my Black Lab. My driver didn’t have the 7th on her calendar, so it’s a darn good thing the procedure was rescheduled! I was also seriously looking forward to this business being history.

Then there was Tuesday which turned out nothing like I planned. It’s rare that I miss a Para transit ride, but I honestly didn’t hear my alarm and woke up just as the doorbell rang. That meant taking care of an appointment over the phone, which was luckily an option. Given the change in colonoscopy date, target could be put off for another day, and our reader brought the essentials Wednesday night. Speaking of essentials, a sighted friend looked at the “supply” packaging, and yes, they are considered overnight strength. Although I’m not sure they are as good as the ones I usually get, they seem to be working better than the shorter, thicker ones my friend brought over as a stop gap until I could get more of my own. Maybe thinner is truly new and improved in this case.

One thing for which I was supposed to shop is a new bathroom trash can. We have had a great one for many years with a pedal which broke. I called the hardware store where we purchased it many years ago, and the price of a new one is outrageous! $140 or $99 for a trash can? Are they serious? Phil has taken up the challenge by looking online. I have a hard time shopping for anything online involving measurements — fitting into a space or on a person. Phil even bought his last pair of shoes online! Not me! I have to put my hands on the object or the object on me to make sure it fits. I don’t want to mess around with returning stuff which doesn’t work.

Now with no colonoscopy this week, I’m determined to reach the bottom of my laundry hamper and finish transitioning my closet to spring and summer clothing. It’s hard for me to believe it’s June, as I am wearing pants and a top with three quarters sleeves today.
It’s been rainy and cool the majority of the week, and the constant clouds add to my lack of energy.

Phil goes back to the doctor about his hand soon. He continues to take the antibiotics for the bone infection, but a nurse at dialysis told him he had black spots on his hand. That doesn’t sound good. It isn’t cold, so he doesn’t think it’s circulation problems. He has bumped his hand a number of times and wonders if it’s just bruising.

I’ll end on a good note. I continue to try to drink more fluid, eat more of the good stuff, and consume less of the bad. My clothes definitely feel longer and better this year than last. This past weekend, we ate at our favorite restaurant for Phil’s birthday last Thursday. A friend also brought over a pretty healthy selection of food which lasted us for several meals. She roasted a chicken with a light sauce of onion and put some of the meat over noodles. She made the best coleslaw I’ve ever eaten outside of a restaurant, and I enjoyed a big salad with lots of different textures and tastes for one meal. She also made hummus, which is a treat for me. Phil doesn’t care for it, but I love it! Our friend made the best vanilla custard I’d ever eaten! I was expecting it to taste great, as I enjoy vanilla almost as much as chocolate. Custards I’d eaten in the past had the texture of tapioca pudding. This was a rich dessert with the texture of pudding with sweet crunchy stuff on top of it. Even though that probably wasn’t the healthiest thing, it was so worth it!

Shopping for “supplies”

Some may cringe when reading this post, but I’m angry enough that something just has to be said. Our subject for today, ladies and gentlemen, was known as “supplies” when I was growing up. They are sometimes known as feminine products and include, pads, sanitary napkins and/or tampons. In this big, bad world of ours, we blind women can’t go to a store and ask for “supplies,” and generally I have ok experiences picking them up from a Target or drug store. I never had to ask a clerk to help me find them until the age of 23. I know it’s hard to believe, but a family member or friend always managed to help me find that particular item until then. It was the first weekend I was visiting Phil in Minneapolis. I had major stress and had an unexpected visit from “Aunt Flow” only two weeks after her last visit. We found a clerk in Walgreen’s and I sheepishly and quietly ask the male clerk for pads. In the loudest voice possible he said, “Oh you mean sanitary napkins?” With this being my first experience of this nature, I wanted to fall through the floor! Luckily he quieted his voice as I requested my brand and type.

Now we jump to the present evening, and I have absolutely no memory of buying my current “supplies”. My cycle is not regular, so it had probably been a while. I usually ask for “overnight strength” for reasons which are obvious enough not to be discussed here. It was just after midnight when I discovered my little corner of “The Red Sea” and went to get my “supplies. “I understand that “overnight strength”. have become thinner and “ultra-absorbent”. Still, I am very skeptical about whether these things are indeed “overnight”. A quick touch of the package was promising, but I was shocked to find how many of the little things were crammed into the bag when I opened it. They were so tightly put-together that one couldn’t really distinguish each one — more like each two maybe.

I am not the first blind person to have mishaps at the store. Phil had a grocery store worker who spoke English perfectly and didn’t know what Mayonnaise was. Two weeks into our marriage, we were “assisted” by a man in a grocery store who was illiterate and could barely see better than his current customers. He stopped other customers for help. (Boy, were we embarrassed and disgusted.) We definitely had some surprises after getting home with those groceries. I’ve heard of little kids telling their mothers the can had yellow stuff on it. The blind mom things it’s pineapple and gets home with corn or vice versa. Definitely inconvenient. But opening this package at midnight on a Sunday night with no other option but to try them isn’t my cup of tea. If I am unsuccessful in finding someone with time and resources to drive to the store for a quick trip to get the right thing, the bus version will take about twice as long, and I can only hope that “riding this ultra-thin white pony” in public won’t result in any visible consequences. Of course, without the security of knowing that the person “helping” me can actually read, it’s possible I may come home with the wrong thing again, although I will be a lot more careful in going over the packaging with discriminating fingers. It’s sad to me that an assumption as basic as that a clerk will pick up the specific and correct item when it is requested can’t be trusted. Is blindness a disaster? No. But it’s at times like these that it can be a royal pain!

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