Even More About Telling One’s Own Story: Part 3

Three weeks ago, at the end of April 2020 I wrote 2 posts on this blog in which I called on folks with disabilities to tell their own stories using blogs, Facebook pages, YouTube channels, Instagram feeds, or combinations of those media, etc. In this third post on this topic I’d like to take a closer look at 2 special cases, the administrators of freyjaharalds.wordpress.com and www.caringbridge.org/public/sierraoleary. The two blogs are quite different, and in fact I’m not even sure if I’d call the CaringBridge one a blog anyway.

I’ll start with freyjaharalds.wordpress.com. The administrator of this particular blog is an Icelander with a disability named Freyja Haraldsdóttir. I won’t write too much about her here, but if curiosity has gotten the best of you, read her blog I’ve linked to, and look her up on Facebook and Instagram if you’re interested. What I’m especially interested in here is Freyja writes many of her posts in Icelandic, both on her blog and on Facebook. There are pros and cons to posting almost exclusively in Icelandic, a language with only around 325 thousand speakers. On the one hand, it’s her native language, so posting in one’s native tongue is only natural. On the other hand, if you’re only posting in a little language like Icelandic, and you have a disability, you should also make an active effort to post in English, that way your ideas and wisdom can spread. Of course, not everyone wants to take the second approach, and that’s ultimately fine with me. Just keep in mind, though, that if you’re only willing to write your disability ideas in little languages, there may be people like me who will do almost everything to read your writings, including tracking down native speakers of your language.

Switching gears now to something quite different, www.caringbridge.org/public/sierraoleary. Here, I’m not concerned about the language in which the posts are written at all. What I’m more interested is the perspective from which the posts are written. The subject of this site is a certain Sierra O’Leary, but I know from reading the posts that Sierra isn’t the author, but rather a relative of hers is. If you were to read the entries, they’d appear to be a classic first-person narrative, and indeed they are from the author’s perspective. But to Sierra, they’re her third person. See what I mean? It’s a bit tricky to explain, but I hope my readers can understand where I’m coming from.

Naming People In Blog Posts

Anyone who has followed my blog for any length of time or has read many of my posts will know that I generally avoid naming folks in my posts outright. Here are my general guidelines for naming names in blogs.

1. The person being named is especially famous or otherwise important: Mozart, Beethoven, Chopin, etc. This can also apply to presidents, governors, mayors, legislators and other public officials. Note that as far as I know I have never needed to name public officials in my posts, yet.

2. Other bloggers I follow or those to whom I provide links in post, especially if sed blogger has known disabilities: Emma Brayton at www.lifewithturners.com, Jenni Taylor at thesitethatbreathes.blogspot.com, Sarah at www.lifewithspinabifida.com, her friend Karly at www.karlyjoy.com, one of my acquaintances, Ashlee Brady-Kelley, at www.iammorethanadisability.com, or even my own blog at chademusician.wordpress.com. The exception to these practices is if a particular disabled blogger wields great influence over the disability community in a particular country, such as the administrator of freyjaharalds.wordpress.com.

3. The person being named is related to me or is an especially close friend: Sara Mornis. Also, if I had a girlfriend I’d name her too.

Apart from those 3 scenarios, I don’t name people in posts.

Blindness vs. Other Disabilities: Part 2 Relationships

As I mentioned in my last post, here’s the second part of my exploration of blindness vs. other disabilities. In part 1 I explored the more physical facets: accessibility etc. In this second post I’d like to delve more into the relationship side of things: able-bodied blind people vs. sighted wheelchair users. When I refer to relationships here, I’m not just thinking about boyfriend-girlfriend or husband-wife, but I’m also including friends and acquaintances too. And just so folks know, I’ve never been in a romantic relationship with a wheelchair user, or anyone for that matter. I almost have, but that’s a post for another time.

The first thing to understand is that wheelchair use and blindness each have a number of root causes. In addition, both blindness and wheelchair use can occur at any stage of life. I was born blind, and some people are born with conditions requiring wheelchair use from a time when they’re little more than babies: cerebral palsy, spina bifida, among several others. And not everyone with cerebral palsy and spina bifida requires a wheelchair, so as you can imagine it’s very variable. In contrast, both blindness and wheelchair use can occur in childhood, adolescence, or at any point in adulthood.

From what I understand, one of the more common causes of later-onset wheelchair use is spinal cord injury: I can think of 3 people I’ve met who I know for a fact have SCIs but that number may be higher, mainly because I’ve encountered wheelchair users whose root cause for wheelchair use I don’t know.

One of the three, a female friend of mine from one of my classes at the Community College of Vermont (CCV) has an able-bodied husband who is not blind, or at least as far as I know he isn’t. The other one, a female acquaintance from Atlantic Coast High School back in 2011-13 is engaged, and I don’t think her fiancé is blind either.

As for the third one, I have no idea. I encountered her very briefly at NVU Johnson in December 2019 and that’s it, just long enough to get her name. After our brief encounter I looked her name up online, and in my quest for more info I found out about her SCI at www.highfivesfoundation.org/athlete/sierra-oleary/, and a possible avenue to get in contact with her at www.caringbridge.org/public/sierraoleary, which I only acted upon at the end of April 2020.

All three of these people, as well as others I’ve met, have all given me pleasant experiences. But there’s one, an acquaintance who rode my bus at Fletcher High School, who didn’t on one occasion. I had apparently asked her a question one too many times, and she replied, in a demanding tone, “Stop asking me!” I was shocked and embarrassed: what had I just done to cause someone to demand me to stop asking questions? I hope that something similar doesn’t happen again, because let me tell you, that was one of the least pleasant experiences that I’ve ever had with someone else with a disability. The worst part of it all was that it occurred with basically no warning, at least from my perspective. Sure, there may have been cues that I couldn’t see, but would I have known?

This leads me into my next point: if you’re blind and you have a friend or especially a significant other who’s a wheelchair user, get with them and talk about these things. Sure, you may not have had the same experience that I had, but use a similar scenario as a starting point. Make sure they know about the importance of giving verbal cues before things escalate: COMMUNICATION IS KEY. Another thing to expect is for them to rely on you to reach tall places and you on them, at least partially, for transportation, especially in less populated areas. Those are the main tips I’d give, but if anyone else has any other ideas, feel free to write them in a comment below this post and I’ll be happy to answer.

Blindness vs. Other Disabilities: Part 1 Accessibility Etc.

Here’s Part 1 of what looks to be a 2- or 3-part series comparing blindness with other disabilities. In these particular posts, I’ll specifically focus on wheelchair users, even though disability is a very broad term encompassing many different and sometimes conflicting conditions and needs, etc. In part 1, I’d like to explore accessibility and other, more physical facets.

When a blind person mentions “accessibility”, it’s usually said or written in the context of technology. For example, I would describe the iPhone and iPad as accessible thanks to Voiceover, and I would describe JAWS on my laptop as an accessibility tool so I can use a computer independently. Accessibility to a blind person can also refer to cities: in most major US cities and towns there are devices at the ends of streets that, when activated, give a blind person an audible warning when the light changes so they can cross that street. Another important feature at the junction of streets and parking lots are slabs commonly called “truncated domes.” They consist of a slab of metal or plastic surrounded by concrete that have tactile circles that blind people can feel with either a cane or their feet. I’ve also been told that the truncated domes are also used by wheelchair users, but I’m not sure.

And speaking of wheelchair users, when a wheelchair user refers to accessibility, they’re describing the ability of their wheelchair to maneuver in any given space. Wheelchair users require sloping ramps, wide doorways and hallways, and open spaces in which to move themselves in their chairs. They also require handrails and other support structures in bathrooms, etc. these are all things that blind people really don’t need, but appreciate.

And remember those conflicting needs I mentioned earlier? In an ideal situation, blind people can’t be wheelchair users and wheelchair users can’t be blind. Of course, there are wheelchair users who are also blind, and some seem to do quite well navigating the world independently, but they’re the exception.

In part 2, I hope to explore more of the relationship side of things: able-bodied blind people vs. sighted wheelchair users. If any wheelchair users or blind people have any additional ideas that I may have missed, feel free to comment on this post and I’ll be happy to answer.

Pianos And Keyboards: The Foundation Of My Musical Life

Out of all the musical experiences I’ve written about on this blog, there’s none more important than that with pianos and keyboards. Keyboard instruments have played such an important part in my musical history that the two CANNOT be separated. Here’s a brief overview of my history with pianos and keyboards.

From the very beginning of my musical life there were three important instruments: my grandmother’s accordion from 1951 that I’ve had since 2012, an upright player piano from the early 20th century that no longer exists, and a 61-key Cassio keyboard. In fact, I’ve had 5 61-key Cassio keyboards: the first one, a second one I got at a camping trip in Maine, a third one whose acquisition by me I don’t remember but that my mother and I gave to a family she was nannying for in Florida, a fourth one that I’ve had since Christmas of 2008 and a fifth one that I got another Christmas that we gave to the high school I graduated from. Oh and there’s also a sixth one I got for Easter one year. Of these, only the one from Christmas 2008 still exists. The reason I’ve stuck with the basic 61-key Cassios for so long is that I’ve had access to acoustic pianos for just as long, so until 2017 there was no insentive to upgrade my keyboard experience.

But in 2017, things changed. I was asked in mid 2016 to play at a family friend’s wedding. At the time I didn’t have access to a keyboard that met the requirements of the piece, but I was fortunate in that the bride’s aunt had a Cassio Privia 88-key, fully weighted keyboard that’s touch-sensitive. After the wedding, I posted a post on Facebook about the events of the previous weekend, and in it I expressed my desire for a keyboard like the one I had just played and practiced on for several months leading up to the wedding. Another reason for upgrading keyboards was that in March 2017 my mother and I moved into a third floor walkup apartment in the center of downtown Rutland. It would have been impossible to haul an acoustic piano weighing several hundred pounds up two flights of stairs, so we made the decision to put it in storage. I finally got an 88-key, touch-sensitive, fully weighted keyboard for Christmas 2017, and I’ve enjoyed it ever since; it’s a Yamaha P45, costing around $400 to $500. It doesn’t have all the “bells and whistles” that the other Cassio keyboard did, but to me, the playing experience was what mattered most. I still have the Yamaha P45, and it has certainly served me well. But I also have my piano back thanks to a move to a bigger apartment on a first floor in another part of Rutland. I’ve also acquired a second ACOUSTIC piano, also from the earlier 20th century whose identity I do not know. The two acostic pianos deserve a post to themselves since their stories are so varied. Hint: they were acquired by me on a whim without much planning. I’m also hoping to get in the next few weeks a 76-key Yamaha Piaggero NP32 keyboard. It’s certainly not the most well-know keyboard in Yamaha’s diverse keyboard and digital piano lines, but it should serve me well; it should serve as a compromise keyboard between my basic 61-key Cassio and fancier 88-key Yamaha P45. I’ll keep this blog updated with the lastes news on that once things start happening.

How To Make Accessible iPhone / iPad Apps

A few weeks ago now I wrote a post in which I explained what app accessibility means for me as a blind iOS user. But there’s one thing I failed to consider at great length: how app developers themselves can actively make apps accessible.

As I mentioned in that post, app accessibility refers to an app’s ability to work well with Voiceover. I wrote about Voiceover in a past post entitled, “How Blind Folks Use Tech.” Naturally, the next step after developing the app, preferably

before

releasing it, is to test it with Voiceover. This will provide you with enormous amounts of feedback about your app development process even

BEFORE

blind folks have a chance to use it. I often have the mentality that it’s better to be safe than sorry, and app development with Voiceover’s guidance is no exception.

Unfortunately, most app developers don’t test their apps with Voiceover, and only find out about accessibility issues later on from blind users themselves. That’s not necessarily a bad thing; after all, apps can be improved, and developers can always test Voiceover’s fitness with their apps when they’re developing a new version of the app.

Sometimes, though, an app works well with Voiceover right from the moment it’s released without the developer’s knowledge. Such is the case with the apps developed by German app developer Markus Sigg, host of the Web site www.polaron.de. In Markus’s case, he has made his apps even more accessible because of my feedback, and because of my work with him on app acccessibility, his apps may become some of the most accessible apps in the entire Apple® App Store®. That’s a tall order, but remember that his apps were

ALREADY

quite accessible right from the get-go even

BEFORE

I contacted him and began working with him on accessibility matters. I look forward to helping him and other app developers make their apps as accessible as possible.

More About Piano Accessibility: Electronic Edition

This is part 2 of a 2-part exploration of piano accessibility. In part 1, “How To: Make The Piano Accessible,” that I wrote back in February, I specifically explored acoustic pianos with their mechanical systems. In this followup I’d like to explore electronic pianos.

In more ways than one, electronic pianos are actually

BETTER

than acoustic pianos for folks with disabilities. Maybe not so much in terms of tone, but in terms of flexibility. For an idea of what I mean by this, ask yourself this question: what can you do to an acoustic piano to make it accessible to those who can’t use the pedals? Not very much, apparently. Here’s why: acoustic pianos are completely mechanical instruments: keys, dampers, pedals, everything. In order to make it accessible, an electrical system has often been used, devices which physically move the pedals at the player’s command. Because mechanical damper pedals can have any number of gradations from fully up to down, any introduction of an electrical pedal mover with a fixed number of gradations could potentially cause a loss of fine pedal control, although I don’t know of any cases where this has happened.

Contrast all that with electronic pianos. Because electronic pianos have electronic pedals, any device with an on-off switch could activate the pedal circuit when connected to the pedal jack on the back of the keyboard or digital piano. As I mentioned earlier, this provides enormous flexibility for folks who can’t use foot pedals for whatever reason. A number of methods can be used, details of some you can find at www.disabled-musicians.org/adaptive-gear. Enjoy exploring, and let me know how it goes.