A Possible Pipe Organ for Turner Syndrome, Part 2

In a previous post I wrote back in February, I wrote about my idea of having a pipe organ built and dedicated to everyone affected by Turner syndrome. But a number of events have taken place since then which have caused me to reconsider some of my original ideas. Yes, there will still be an organ; in fact, two of them, built in vastly different styles. More on that later, but first, I discovered a new organ that we could use as a model!!! But before we explore our new model organ, I think it would be helpful to read this general introduction to pipe organs; then come back to this post.

The organ which we could use as a model was built in 1925 by the Hinners Organ Company, and it can be found at the Emmanuel Lutheran Church in Tilsit, Missouri. The Organ Media Foundation produced a video about it in June of 2018. As organs go, it has a thick, warm sound, typical of instruments of its era. It’s also quite small, having only one keyboard, or manual, with four sets, or ranks, of pipes: an 8′ open diapason, an 8′ lieblich gedackt, an 8′ gamba, and a 4′ flute; it also has a 16′ bourdon in the pedal. There is also a special coupler, which plays each key, as well as the same note an octave higher. One downside, though, is the short range of the pedal keyboard; it’s only one octave. In our organ, we would extend it upward to two octaves and add a second stop at 8′ pitch in order to make the organ more versatile. By doing this, we wouldn’t need the divided keyboard found in the original instrument. Otherwise, we would maintain the same key and stop action, manual keyboard range, the octave coupler, and, most importantly, the thick, warm sound.

Some of you reading this post may be wondering, “What does a pipe organ have to do with Turner syndrome?” First, before I answer that question, I would recommend you read this biography about Dr. Henry Turner, after whom Turner syndrome is named. The biography is quite detailed, but the most important info you need to know are the dates: 1924, 1938 and 1970. Dr. Turner lived through a period in the history of the organ known as the Organ Reform movement. It was also called the Organ Revival movement by those who were actively involved in it. In a nutshell, starting in the 1920s in Germany, a small group of organists decided they’d had enough of the big, thick sound which was common at the time, represented by the Hinners organ I mentioned earlier. They basically said, “What if we could go back, to a time before the sound got thick?” They understood that the organ’s sound had gotten its thickness primarily in the 1800s, during the Romantic period (notice the capital R; it has nothing to do with love). They also had some organs from the 1700s and 1600s which they used as inspiration for their new instruments, and so began the Organ Reform; you can read all about it at http://www.lawrencephelps.com/Documents/Articles/Phelps/ashorthistory.shtml.

Several years later, in the 1930s, it came to America. Things started out very slowly; after all, the thick, Romantic sound was still fresh in everyone’s mind. An example of that would be our good old friend the Hinners, but we also have the Ernest M. Skinner organ, Opus 327, built in 1921, at St. Luke’s Episcopal Church in Evanston, Illinois. Here is an audio example of what it sounds like; note the big, thick sound. Ernest M. Skinner’s instruments were all about that Romantic sound, but it wouldn’t last forever. No; an English gentleman named G. Donald Harrison came to America in the late 1920s to work for Skinner, and, after a few years and a takeover of the company, started introducing little tiny reforms into the instruments he built. The tiny reforms eventually, over a few more years became bigger and bigger, culminating in our next example instrument, for the Church of the Advent, Boston, installed in 1937. Here is an Audio example of the Boston instrument. There is quite a difference between the two organs, built only 15 years apart; the Boston instrument sounds, perhaps, a little bit brighter and thinner than the Evanston Skinner. The Boston instrument represented a whole new sound, never before heard in America, but to most of its admirers, it was perfect.

But the perfect sound wouldn’t last very long, either. After yet another World War, some new organs and ideas began arriving from Europe. In some ways, they were a continuation of what had been going on in prior decades, but they also pushed the boundaries of what the reform could do. They introduced, or rather re-introduced, mechanical key action, which hadn’t been done on a large scale in America in quite a long time. Most important, was their tone; it was the complete opposite of the Hinners or the Evanston Skinner. An audio example can be heard in this organ, built by the German organ builder Rudolf von Beckerath in 1957, for Trinity Lutheran Church, Cleveland, Ohio. It has a thin, almost “cold” sound, which would have probably been a shock to those listening to it for the first time, particularly for those folks who didn’t have any direct connections to the organ.

The Cleveland von Beckerath had very far-reaching results, a few of which are well worth noting. First of all, a group of young organists in Montreal, headed by Kenneth Gilbert, a former organist of Queen Mary Road United Church, had, through their reading and study, become completely convinced that it was necessary for them to have instruments quite different from those available locally. A visit to the Cleveland instrument resulted in a smaller von Beckerath for Mr. Gilbert’s church in 1959. Subsequently, an absolutely gargantuan instrument was ordered for St. Joseph’s Oratory in Montreal, where Raymond Daveluy was the organist, and this was installed by von Beckerath in 1960. In 1961, yet another von Beckerath organ was installed in eglise de l’lmmaculee-Conception, where Gaston Arel was the organist, and another von Beckerath was ordered some time later for the First Presbyterian Church in Winnipeg. Thus four von Beckerath instruments appeared in Canada directly as a result of the 1957 installation in Cleveland. Several other von Beckerath instruments had also been installed in the United States primarily as a result of the success of the Canadian instruments, the most notable among these being the magnificent instrument installed in 1962 in St. Paul’s R. C. Cathedral in Pittsburgh, where Paul Koch was the organist. ** Taken from: ‘A SHORT HISTORY OF THE ORGAN REVIVAL” (http://www.lawrencephelps.com/Documents/Articles/Phelps/ashorthistory.shtml)

A Valentine’s Day Post For 2022

Last September, I wrote a post, found at https://chademusician.wordpress.com/2021/09/30/a-blind-guy-and-his-paraplegic-girlfriend/. As the title suggests, I, a blind guy, am attracted to women in general and specifically those who use wheelchairs. Now, I want to make one thing clear: I am NOT just attracted to her use of a wheelchair. Yes, wheelchair use is certainly important, but what’s also important is her personality, her interests, etc. I like to get to know the whole of her; her chair use is just a part of what makes her who she is, and I embrace it.

I also wrote about 3 important topics that a blind person should discuss with a potential partner who uses a wheelchair: canes getting caught in wheelchair wheels, methods for wheelchair users to guide blind people if needed, and using a wheelchair’s sound as an auditory cue. Firstly, I was, and still am, concerned that a blind person’s long, white cane could get caught in a wheelchair user’s wheels if both are not careful, with potentially disastrous results. Secondly, there are two primary methods for wheelchair users to guide blind people: verbal directions and sighted guide. I had recommended that sighted guide be used, particularly if the injury is higher up on the spinal cord, affecting the injured person’s ability to project their voice (https://www.myshepherdconnection.org/respiratory/breathing-before-injury/sci, or this video https://youtu.be/tp0i-n6zvdM). The article and video primarily deal with coughing and sneezing, and rightly so. But the same muscles are also used when giving verbal directions, especially when in a noisy indoor environment or when outdoors. And consider that there is not only a horizontal distance but also a vertical distance between a blind person’s head and a wheelchair user’s head. It is for these reasons that I would recommend it; I’m trying to make things easier for everyone involved. And finally, the auditory cue. When a user of a manual chair is pushing themselves around using their hands on the rims which encircle the rear wheels, a soft, high-pitched, metallic sound is produced, a sound which I could use to determine the user’s location without the need to say anything.

In addition, I wrote about my stay at the Carroll Center for the Blind in Newton, Massachusetts, which is expected to last until the middle of March. Since my post in September, I’ve of course met more blind and visually impaired people, and strengthened connections with those I’d already met over the summer. One of those people who I’d met previously, and who I mentioned in the post from September, is a guy named Nick; he is a student at Boston College; his best friend Conor is a wheelchair user due to a spinal cord injury; I finally got to chat with Conor over Zoom!!!

When I went back to Boston after the Christmas holiday, I mentioned to Nick that I was still interested in meeting his friend Conor. Conor agreed to let Nick give me his Boston College email address, and on Saturday January 15 we had our first of several Zoom chats. We’ve talked about a number of different things: understanding each other’s accessibility needs, the meaning of independence, and the huge potential that could be had from traditional friendships and romantic relationships between those with spinal cord injuries and visual impairments. In our second chat, on January 22, I mentioned the relationship theme, and asked him if he has any female friends who have spinal cord injuries wwith whom I might be able to connect. While he said he knows a few, he doesn’t have any contact info, so he couldn’t set me up. I was a little disappointed. We both determined that I would need to find some more girls by myself, but I wasn’t so sure; I didn’t want to seem strange or anything.

The Zoom chat ended a short while later, and I spent the rest of that day not sure about how to proceed. What I was sure about is that two of my acquaintances, one blind and the other with a spinal cord injury (a quadriplegic to be exact), had become best friends while they were students at Boston College. I also knew about my own successful friendship; she’s the female paraplegic I mentioned in my post back in September. We first met around 6 years ago in a class we took together at the Community College of Vermont and later spent some time together during the following semester at Castleton University. There was one specific instance in which we had apparently been texting each other in the days leading up to an event. When the event came, I made sure to find her. I don’t remember if I found her during intermission or afterword. When I found her, she was surprised to find me, and quickly put me on the spot, asking, “Did you come for the event, or for me because I’m here?” I felt a little guilty. “Both,” I replied. She seemed satisfied with my answer, and the rest of our interaction went smoothly. Based on my experience with her, and Nick’s friendship with Conor, I know it’s definitely possible for two people, one blind and the other with a spinal cord injury, to have a successful romantic relationship. I know that’s true of me; I want to find another female paraplegic like my old friend from college and university.

Throughout this post, I’ve used the terms paraplegic and quadriplegic; you can read more about them at https://www.shepherd.org/patient-programs/spinal-cord-injury/levels-and-types/thoracic-spinal-cord-injury and https://www.shepherd.org/patient-programs/spinal-cord-injury/levels-and-types/Cervical-Spinal-Cord-Injury respectively; you can also listen to or watch this video at https://youtu.be/a1rj4-NfE-o. One interesting thing is that, out of everyone I’ve met who I know have spinal cord injuries, all but one have been paraplegics, including my old friend from college. The only quadriplegic with whom I’ve chatted with directly is Conor. I’ve interacted with others over social media, but he’s the only one I’ve met officially. Also, most of those with spinal cord injuries I’ve met in real life and interacted with on social media have been women, as well; Conor is also the only man. This is quite unusual, since most spinal cord injuries occur in males. I don’t know why this is: could it be chance? Or the fact that I’m a straight man, attracted to women? I think it’s both factors combined. A third factor could also be that the main character of one of my favorite books, “Winners: a Novel,” by Danielle Steel, is named Lily; she becomes a paraplegic after an accident while skiing in the mountains of California. You’ll have to read the rest of the story, but needless to say, it’s amazing, and so is Lily.

I mentioned independence earlier in this post.

A New Carillon For Turner Syndrome

In my last post, I wrote about my idea of dedicating a special pipe organ to those with a rare condition called Turner syndrome; you can read about it at https://www.turnersyndrome.org/about-turnersyndrome. Here, I would like to do the same, but this time, it’s a far more unusual musical instruments, the most beautiful and amazing of them all: the carillon.

A carillon is a keyboard instrument, but unlike a piano where the keys strike strings, the keys in a carillon strike bells, similar to those found in churches and other institutions. Not only that, but the keys are played with the fists rather than the fingertips. But don’t worry, it’s actually not difficult to play once you get used to it. You can read more about it at https://www.gcna.org/about-carillons. Or, you can listen to this very popular video of the one at the University of Chicago: https://youtu.be/VkRIMgTU7cA. This one is much larger than what I have in mind; more on that in a moment. For an instrument that is much closer to the Ericksonian ideal, you can listen to this one, the McGaffin Carillon, in Cleveland, Ohio: https://youtu.be/gOPZlbvZhH4 or https://youtu.be/WWJcXz87Nz8.

I’ve thought about having one, and possibly two, new ones dedicated to everyone affected by Turner syndrome since July 2021 when I was first introduced to the instrument at Norwich University in Northfield, Vermont. Since then, that desire has only grown stronger, especially after finding two in Oklahoma City, where Dr. Turner spent the bulk of his career and where he described the condition that now bears his name (https://turnersyndromefoundation.org/wp-content/uploads/2017/07/A-Tribute-to-Henry-H-Turner-MD-1892-1970-A-Pioneer-Endocrinologist.pdf).

Historical Note: By 1938, the year Dr. Turner published his research about the new syndrome he had discovered, there were 19 carillons in North America; by the time of his death in 1970, there were a grand total of 76!!! This total includes the two in his hometown, Oklahoma City (http://www.towerbells.org/data/IXNATRyr.html).

Both carillons in Oklahoma City were made in the mid-1950s, by the Petit & Fritsen bellfoundry, of Aarel-Rixtel, the Netherlands (http://www.towerbells.org/data/IXNATRfdy.html). In addition, both carillons have 42 bells, with a keyboard range from C to G, minus the lowest two sharps and flats, and both instruments have a pedalboard of 1.5 octaves, from C to G (http://www.towerbells.org/data/IXNATRkr.html; medium carillons missing two bass semitones). The only diffrence is that the one at St. Luke’s Methodist Church transposes up a minor third, to E-flat (http://www.towerbells.org/data/OKOKCSTL.HTM) and the other, at Westminster Presbyterian Church, transposes up a fourth, to F (http://www.towerbells.org/data/OKOKCWPC.HTM).

In our carillon for Turner syndrome, we could maintain that keyboard configuration, but update it using the standards of either the Guild of Carillonneurs in North America (https://www.gcna.org/resources/Documents/keyboard-standards.pdf) or the World Carillon Federation (http://www.carillon.org/eng/dynamic_frame_eng.htm?http://www.carillon.org/eng/actueel/gdansk_3.htm). Personally, I like the WCF standard better because of the smaller space between keys. However, for a more ideal situation, we could extend the range just a little higher, to a full four octaves, with the same WCF keyboard standard. There are a few, very good reasons for doing this. Consider the list at http://www.towerbells.org/data/IXNATRnr.html, which groups them based on the number of bells rather than how their keyboards are configured. If we examine it closely, we’ll see that there are many more with a full four octaves, with 47 or 48 bells than there are with 3.5 octaves, 42, 43 or 44. Mostly it has to do with the fact that there just isn’t as much music for smaller carillons (https://www.gcna.org/about-carillons), but also, the 3.5-octave instruments are close enough to four that it makes sense to add a few more notes for a massive benefit.

Another important factor that we will need to consider in our possible carillon for TS is the weight of the clappers. As you may have read in the article about carillons linked earlier, the clappers are what move to strike the bells, and one clapper is connected to each bell, and each key on the keyboard. You may have also read a bit about the bourdon, the bell that sounds the lowest pitch. We want to make sure that our bourdon isn’t too heavy; remember those clappers I mentioned earlier? But we also don’t want it to be too light either; we still want the instrument to sound like a small carillon rather than a big music box. Case in point: the one at Second Presbyterian Church in Newark, Ohio (https://spcnewark.org/carillon-history/). The reason is that the bourdon of that particular instrument weighs just 120 pounds and produces a C, one octave above middle C, making the instrument transpose up a record 2 octaves. Our carillon for TS should transpose up, but the answer to the question of transposition varies depending on how it is approached. Using the two instruments in Oklahoma City, one could just have it traspose up a fourth, like Westminster Presbyterian. Alternatively, one can continue the pattern of whole steps: E-flat, F, and G, which would mean it would transpose up a fifth. Alternatively, one could use the circle of fifths. Since E-flat and F are both on the flat side (F with 1 and E-flat with 3,) it stands to reason that there’s a key in between the two, with 2 flats: B-flat. This circular approach puts the instrument up a minor seventh. Whatever the final transposition is, it should NOT be in concert pitch due to the clapper weight I mentioned earlier.

Throughout this post, I have focused on acoustic carillons, with real bronze bells, mechanical key action, etc., the only setup recognized by the GCNA and other organizations. But as wonderful as it would be to have them everywhere, they are very expensive, and not every building is suitable for them. These reasons are why electronic carillons exist. In addition, all the problems I’ve mentioned, those of clapper weight and bourdon pitch magically disappear into thin air when electronic systems are considered. The problem is that most of the electronic ones (at least those that I know of) are not played from traditional carillon keyboards, and some aren’t even set up to be played manually at all. One possible solution is using carillon sample sets. Basically, someone affiliated with a particular instrument makes a recording of each bell, organizes all the recordings, refines them if necessary, and releases them together as a set.

An example is the Lurie carillon at the University of Michigan; you can download it at https://gobluebells.wordpress.com/2016/09/21/lurie-carillon-samples/. However, I’m not interested in using the Lurie samples. Partly because the instrument is too big, but also, the lowest octave or so contains a lot of background noise that I don’t like. Instead, I’d like to sample another one, possibly the one at Westminster Presbyterian in Oklahoma City.

But why a carillon? There are a few compelling reasons. First, consider the ubiquity of bells in churches and other institutions, then consider that there are only around 200 carillons in North America. These stats make carillons quite rare. I suppose that one could almost say something similar about Turner syndrome and its rarity (https://www.turnersyndrome.org/about-turnersyndrome). Also, bells, by their very nature, have a prominent minor third overtone, in contrast to most other instruments which have a major third (https://www.gcna.org/about-carillons). These minor thirds could represent a few different aspects of TS, which I’ll leave open to interpretation. Convinced?

A Possible Pipe Organ for Turner Syndrome

It’s February 1, 2022, it’s Tuesday, and it’s the start of Turner Syndrome Awareness Month (https://www.turnersyndrome.org/blog/categories/turner-syndrome-awareness-month)!!! To celebrate, I thought it a good idea to explore some musical ideas, about a special pipe organ, and a carillon. If you want to learn more about both instruments, keep reading.

The special organ is inspired by a few different musical ideas. On the one hand, I have taken a page from small pipe organs, and those built by amateurs. The small organ ideas have primarily come from an organ builder in Australia, J. W. Simon Pierce. In particular, an article on his Web site, found at https://piercepipeorgans.com.au/links/organ-articles-and-media/small-organs-a-perspective. What I’m mainly interested in here is their relatively small size, but perhaps more importantly, their potential suitability in accompanying a choir with no tenors and basses. With that type of choir skewed toward the top, sheer size isn’t as important as musical clarity.

Amateur organ builders have important lessons to teach us, too. I’ll use http://www.rwgiangiulio.com/ as a classic example. Here, this builder decided to do something rather unusual: he took the lowest octave of pipes in the 8′ principal rank and stopped them; you can read more about this at http://www.lawrencephelps.com/Documents/Articles/Beginner/pipeorgans101.html. As the name suggests, the principal, also called diapason, is the main sound; it’s what makes an organ sound like an organ. In our special organ, taking this approach of stopping the lowest octave of the 8′ principal/diapason rank could limit the vertical height of the instrument, but we’ll need to find out whether or not this is actually necessary. The lowest octave of keys wouldn’t be used often anyway, so it shouldn’t matter.

Whatever the case may be, the organ should have 2 manual keyboards, for the player’s hands, with 56 keys each, and a pedalboard of 30 keys; both manuals and pedals should be built to the specifications of the American Guild of Organists. It should also have mechanical key action, which you can read more about in the Phelps article linked earlier. Basically, when you press a key, it pulls on a long, thin piece called a tracker, which is connected, in some way, to a palate, at the base of each pipe. As the article explains, all the pipes which play a specific note receive their wind from a single channel, which is opened and closed by the corresponding key on the keyboard. The article also mentioned the stops. Each set, or rank, of pipes has a long piece underneath it, with holes in it, and when a stop is engaged, those holes line up with the pipes, allowing air to flow into them when a palate is opened as I mentioned earlier. The stops can either be electric or mechanical, but personally I prefer mechanical stop action for a truly authentic experience.

Tonally, the instrument should be based on those found in late 19th-century America, namely those by either Johnson and Son or Hook and Hastings. In fact, I’ve thought about using the 1875 Johnson organ at St. Stephen’s Episcopal church in Middlebury, Vermont as a model; you can read about it at https://pipeorgandatabase.org/organ/9738. I had the great pleasure of playing it on November 23, 2021, and it was that experience which inspired me to write this post. Our organ would of course not be an exact copy. For one thing, that Johnson organ has 58 keys in each manual and a pedalboard of 27 keys; our organ would have 56 keys on the manuals and 30 keys in the pedal. Also, that organ has two stops which we wouldn’t have: a reed and a mutation; you can read about them in the Lawrence Phelps article linked earlier. We wouldn’t have them partly to simplify the building process, and partly because I don’t particularly like mutation stops. There are also no mixtures in the Johnson, and there wouldn’t be in our special organ either; a mixture is a group of pipes, usually principals, that are quite high in pitch which add brilliance when drawn with others of lower pitch. I have actually played an organ of this size with not one, but two: the organ at the Federated church in Castleton, Vermont, built in the ’70s by a certain Bozeman-Gibson firm. Now, we’ll have to see who might be willing to build this proposed organ. I look forward to the results.

New Year, New iPad

Welcome to 2022 everyone! I know we’re already 2 weeks into the new year, but I wanted to hop on here and announce that I got a new iPad 9th Generation as a very late Christmas present. It has 64 gigabytes, and, most important for me, NO cellular functions; just WiFi. I’m already seeing the benefits of the upgrade and can’t wait for more to come.

Musicians vs. Non-Musicians

Last night, I had the great pleasure of playing the wonderful pipe organ at St. Stephen’s Church on the Green in Middlebury, Vermont, followed by the carillon at Middlebury College a short drive away. This was all thanks to my carillon teacher, the amazing musician George Matthew, Jr.. For more about carillons, feel free to visit https://www.gcna.org/about-carillons. While I enjoyed both experiences, what I’ll admit I didn’t particularly enjoy was how my nonmusician mother criticized my playing. Yes, she’s my mother; I love her dearly and know that she has the best intentions when doing or saying anything to me that she thinks will help me. However, I also know that, as someone who isn’t a musician, there are certain things she may never understand, no matter how much I or anyone else might try. One of those areas which may never be known to her is musical criticism.

For starters, I am all for musical criticism. I fully support others giving me feedback on what I can improve, be it in music or anything else. However, what I’ve found over the course of my life being a musician is that there are right and wrong ways to give feedback. Most unfortunately, last night was a classic case of what NOT to do. After playing both instruments, my mother told me several times that I “dub around” when playing musical instruments.

While I will admit I have a tendency to “dub around,” it’s also worth pointing out that, before yesterday evening, I had not sat down at a pipe organ console and played in years. That fact is very important to keep in mind, as over the course of that time, I have lost some critical skills needed to play the organ, namely hand-foot coordination. For that reason, I was bound to make mistakes. I also recorded the entire event, and when I listened to the recording later, I realized just how extremely overconfident I was. I had assumed that the organ music I had listened to over the preceding year or two, tracking the bass lines played in the pedals and imagining how I might do it, could somehow prepare me for the real deal. Last night made it painfully obvious that this strategy was not an effective one. I have since realized that there is no replacement for consistent practice. Now, I’m interested to see how I put ideas into action over the coming days.

I should also mention that yesterday was the first time I had ever played that particular instrument, a fairly small tracker organ originally built in 1875 by the firm of Johnson. It’s almost 150 years old; it’s so old that the entire instrument, except for the blower is all mechanical: keys, stops, everything! It even has its hand-pumped bellows still intact, so that if the power goes out, it can still be played.

Every time I, or any other organist, sits down at an instrument they have never played before, they like to spend some time getting familiar with it. They need to take some time to learn the layout, and pull out each stop individually to hear how it sounds. Only then can they start to play music. If you see an organist hop on the bench, turn it on, select stops, and start playing right away, it probably means they are familiar with that particular instrument and can therefore hear it in their head. Take the virtual pipe organs I use on my iPhone and iPad; you can read about them at http://www.polaron.de/Napo/index_en.html. One of my favorite apps from the collection is Pitea, a 3-manual, 33-stop instrument, which I will use as an example (http://www.polaron.de/Pitea/index_en.xml). With Pitea, I can open it, select stops and start playing without much thought. This is because I have played it so frequently that I know what each stop sounds like, and can hear them in my head. The only thing I can’t do yet is play it with external hardware, which is needed to get the most out of it. Last night, my mother didn’t wait; she asked me to play something when the only stop I had pulled out was the 8′ principal, the main sound in the organ. Yes, I know there were just three people in the room (her, George and I)but as someone who is familiar with organs I thought, “Really? You can’t wait until I pull out a few more?” I did pull out some more, and played the Christmas carroll “O Come All Ye Faithful.” But I was not about to play it with just one stop; that would have made it sound rather empty.

Blind People and Their Potential Paraplegic Partners

In this final post of September, to celebrate Spinal Cord Injury Awareness Month (https://unitedspinal.org/spinal-cord-injury-awareness-month/), I would like to delve into a topic that I have touched on in a few previous posts, including https://chademusician.wordpress.com/2021/02/14/a-valentines-day-post/ and https://chademusician.wordpress.com/2020/08/08/do-you-really-need-it-a-case-for-accessibility-everywhere/: what it would be like for a blind person and a wheelchair user to be in a relationship. I’ll do it from the only perspective I know: that of a blind, straight man.

With that in mind, I’d like to explore more of this admittedly unusual coupling. I’ll focus on spinal cord injuries here, but these ideas could apply to any condition in which someone could become a wheelchair user. And about the title. The reason for the title is two-fold. Firstly, out of all the people I’ve met who I know have a spinal cord injury, all have been paraplegics, and in fact, I have never met anyone who is a quadriplegic, at least not in person or over Zoom. I have interacted with some over social media, but that’s it. Secondly, and related to the first point, is that all the paraplegics I’ve met have been completely independent, so for a blind person, dating one wouldn’t be too difficult from a logistical standpoint. That is, blind folks wouldn’t need to worry about something going wrong with their partner at home while they’re out, or needing their partner to give verbal directions on how to give care and expend energy in the process, which could very well happen if a blind person is dating a quadriplegic. Personally, I’m not particularly interested in finding out.

I also think it’s worth discussing the inspiration for this post. Back in 2016, while taking a class at the Community College of Vermont’s Rutland center, I had a classmate who, you guessed it, was a female wheelchair user; a paraplegic. We sat near each other in class, so we were bound to have some interaction. We did indeed have quite a bit of interaction, and over the course of the semester we became good friends; she let me feel a set of hand controls which allow her to drive a car, and tune her guitar. The next fall semester, we encountered each other, this time at Castleton University where she was studying nursing, and I got her contact info; we have also connected on Facebook. Unfortunately, her nursing and my studies at the community college, and later at Northern Vermont University, have meant that we haven’t stayed in much contact. But the success of our friendship during that semester has shown me, and hopefully her as well, that it IS possible for a blind person and a wheelchair user with a spinal cord injury to connect and become good friends. And speaking of connections, since the middle of September I have been at the Carroll Center for the Blind in Newton, Massachusetts, doing independent living training. During my stay I have had the great pleasure of meeting many people with visual impairments, quite a few of whom lost their vision later. One of those blind people I’ve met is a student at Boston College who wears a number of hats here at the Carroll Center; his best friend has a spinal cord injury. While I haven’t met his friend yet, I’ve mentioned my interest in relationships with women with SCIs, and he says it’s not as ridiculous as I had initially thought, and that it’s definitely possible. With those experiences, having that friendship I mentioned, as well as following several people with spinal cord injuries on social media, I’m now convinced that there is great potential in bringing those with SCIs and blindness together. Now, I would like to find out whether that connection can hold up in a relationship. And with that, let us explore the three big concepts I alluded to earlier in the post.Anyway, I digress. Back to the main post.

There are three important facets that blind people should discuss with potential partners in chairs: canes getting caught in wheels, methods for guiding a blind person when in a wheelchair, and using a chair as an auditory cue. These three items don’t necessarily need to come up on the first date, but they certainly can, particularly if both of them have spent some time together in a more controlled environment and if the date is in a location with which either the blind person or both people are unfamiliar. In the next few paragraphs I’ll break each point down individually, then illustrate how a blind person might discuss it with a partner in a wheelchair.

First, canes getting caught in wheels. I put this item at the top of the list because it is extremely important; it also determines the second one, which is using “human guide” or verbal directions; more on that later. I also started with that because if a cane were to get caught in wheelchair wheels, it could cause serious injury. This is especially worrisome when the wheelchair user has a spinal cord injury but it’s something to keep in mind regardless of the underlying condition. Not only that, but all 4 wheels are potentially at risk, too. To eliminate it as much as possible, I might want to fold my cane up and stow it somewhere. This is particularly true on narrow paths and/or inside buildings, at least until we determine that you are comfortable around my cane and aren’t worried about it getting caught.

Next, how could she guide me if she uses a wheelchair? There are two major methods: so-called “human guide,” and giving verbal directions. In “human guide,” I would put my hands, either on the back of her chair or on her shoulders, and walk behind her as she rolls her chair. I’ve done it before with several wheelchair users, and have found it to be quite effective. Otherwise, she could just give me verbal directions, which are self-explanatory. The method used will depend on her ability to project her voice in outdoor or noisy environments (https://www.myshepherdconnection.org/respiratory/breathing-before-injury/sci. Based on the info in the article, it would seem to me that most quadriplegics may not be able to speak loudly enough to give verbal directions to their potential blind partner. With paraplegics, it may be more effective, but it will depend on her injury. Regardless of what that may be for her, we can come up with something that satisfies both of us.

And last, but certainly not least, using the sound of a wheelchair as an auditory cue. As I mentioned in my last post, I am able to hear the soft, metallic sound created when the rims on the rear wheels of a manual chair are in contact with the user’s hands. This is important, because if we were ever in a situation where I’m sitting or standing still, and she’s rolling her chair around, I could tell where she is without her needing to say anything as long as I can hear that sound. Not only that, but I may look in her direction while she’s at it, which may make her think I’m not blind, when in reality, I definitely am. I’m just using my heightened hearing, particularly higher frequencies, to compensate for lack of sight.

These are just some things to think about from my perspective as a blind, straight man. If there is anything I should know about her as a wheelchair user with a spinal cord injury, she should definitely tell me. The more I know, the better.

About Spinal Cord Injuries And Music

In a few posts, notably https://chademusician.wordpress.com/2021/09/01/more-about-quadriplegic-singers/, https://chademusician.wordpress.com/2021/05/20/making-the-impossible-possible-thoughts-on-a-quadriplegic-leading-a-choir/ and https://chademusician.wordpress.com/2021/02/12/making-the-piano-accessible/, I shared some ideas about how wheelchair users, and specifically those with spinal cord injuries, could actively participate in making music. Using those posts as guides, I would like to devote the rest of this post to exploring various musical instruments, and who could potentially play them. There are two approaches to this, either in the traditional orchestra score order (https://www.dartmouth.edu/library/catmet/cataloging/score_order.pdf; http://www.orchestralibrary.com/Symphony_Orchestra_Library_Center/Score_Order.html) or the order in which spinal cord injuries are often listed from top to bottom (https://www.shepherd.org/patient-programs/spinal-cord-injury/levels-and-types; https://www.flintrehab.com/spinal-cord-injury-levels/). I have decided on the latter for this post. So, with all of this info in mind, let us begin our musical exploration.

Starting at the top, with cervical spinal cord injuries in which a person is considered a quadriplegic (https://www.shepherd.org/patient-programs/spinal-cord-injury/levels-and-types/Cervical-Spinal-Cord-Injury; https://www.flintrehab.com/cervical-spine-injury/), we find that the only real option is MIDI (Musical Instrument Digital Interface). You can read more about this 40-year-old, amazing technology at https://hobyst.github.io/flmidi-101/preamble/introduction_to_midi.html. Believe it or not, there are actually a few quadriplegics who have used MIDI to play music after becoming paralyzed. The one I’ll highlight here is from California; before paralysis she was a cellist and pianist, and now, thanks in no small part to MIDI, she is a composer. You can read her story at https://www.amazinggracedocumentary.com/ or https://www.gracefisherfoundation.org/about. Even the young quadriplegic from South Carolina who I have mentioned in several past posts could benefit from MIDI: all she would need to do is get a musical instrument called a MalletKAT (https://www.alternatemode.com/malletkat/), tape two marimba or xylophone mallets, one on each of her hands, and go from there. Whether she would be interested in this musical idea, I don’t know. But what I do know is that the same concept of taping mallets to the hands may also help other quadriplegics like her play more conventional percussion instruments, such as snare drum, xylophone, and even timpani.

Next, we come to the thoracic region (https://www.shepherd.org/patient-programs/spinal-cord-injury/levels-and-types/thoracic-spinal-cord-injury; https://www.flintrehab.com/thoracic-spine-injury/). Here, conventional musical instruments start to become a possibility, since people with thoracic (or lower) injuries are considered paraplegic. According to the two articles linked at the top of this paragraph, these instruments are most practical below T2. They include cello, guitar, piano and harpsichord. I would recommend these instruments due to their playing positions causing fewer problems with the shoulders than either violin or viola, despite their larger sizes. And as for the piano, and by extension the harpsichord, read my post at https://chademusician.wordpress.com/2021/02/12/making-the-piano-accessible/. I should add that, although the harpsichord does not have any pedals, most of the music written for it is quite difficult, so my recommendation is to start on piano, as most players do. Certain varieties of harp may also be a good option so long as they have levers.

And last, but certainly not least, the lumbar region (https://www.shepherd.org/patient-programs/spinal-cord-injury/levels-and-types/lumbar-spinal-cord-injury; https://www.flintrehab.com/lumbar-spine-injury/). From here down to the end, all of the above applies, but now we can start thinking about woodwinds and brass. The reason for this is that, contrary to what most players and teachers of wind instruments may tell you, so-called “breath support” in those instruments is NOT provided by the diaphragm. Instead, it is provided by the abdominal, and, to a much lesser extent, the intercostal muscles (https://bretpimentel.com/breath-support/). This fact is quite obvious to paraplegics: the amazing Anna Sarol alluded to this in one of her Instagram posts (https://www.instagram.com/p/CLAodf7pEO-/?utm_medium=copy_link). Thank you, Anna, for pointing this out. Now, I’m going to spread it around the woodwind world, and we both should say it a little louder for those folks in the back: support in wind instruments is NOT from the diaphragm!!! Finally, you can read about my own history with SCIs at https://chademusician.wordpress.com/2021/09/15/how-i-found-spinal-cord-injuries/.

How I Found Spinal Cord Injuries

With September being Spinal Cord Injury Awareness Month (https://unitedspinal.org/spinal-cord-injury-awareness-month/), and having written at least half a dozen blog posts mentioning it in some form or another, I thought it a good time to write a blog post detailing how I have come to know a few in real life and follow several people with SCIs on social media. So, here goes.

I don’t remember exactly when I first found out about spinal cord injuries, but what I do know is that, one day in the late 2000s, I asked my mother about the term quadriplegic, which I had learned in a dictionary. I asked her if she knew anyone who is one, and she said yes: a guy named “Swampy.” His real name, I found out this year, was Gary Huntley, who lived here in Vermont from 1950-2010. He was very severely affected. She also knew a paraplegic (one whose legs’ and possibly their trunk are paralyzed but with normal head, shoulder, arm and hand function) from the short time she and my sister lived in Montana.

I also know two people, both paraplegic, and female: one went to the first high school I attended in Florida from 2011-2013 and another one was in a class I took at the Community College of Vermont in the spring of 2016, with her as a classmate. The friendship we developed, both during that semester as well as later that year at Castleton University, was very successful. So much so that I’ve started to use it as a standard to which I compare all my more recent experiences with wheelchair users. And over the past year especially, it has given me hope that blind people and those with SCIs can come together, not just in traditional friendships but in romantic relationships, as well. More on that in a future post.

There are also two others, one I graduated high school with and another at Northern Vermont University-Johnson, but for various reasons I haven’t stayed in contact with them. And of course, I follow several on social media: 5 on Instagram as of the time of writing. I also follow 2 quadriplegics, one of whom directly and the other through her mom’s #McKennaStrong Facebook page. Hint: she’s the young quadriplegic from South Carolina who I have mentioned and praised in past posts.

So what is it about spinal cord injuries that interests me as a blind person? The biggest factor is that both conditions can occur at any time of life (https://www.shepherd.org/patient-programs/spinal-cord-injury/about; https://visionaware.org/). I know from experience having met many folks with visual impairments; some were born with it like me, some developed it in childhood, and still others in adulthood due to various circumstances. Also, both conditions require a good deal of emphasis on accessibility, but how each one defines the term depends on whether they are blind or a wheelchair user. I go into greater detail about that in a previous post at https://chademusician.wordpress.com/2021/02/10/accessibility-different-meanings-to-different-people/. And whether a person is completely blind from retinopathy of prematurity like me, or is a wheelchair user due to a spinal cord injury, or something else, the shared experiences of having a disability, and the powerful effect that those experiences have on someone, are why I think it is worth bringing the two groups together. In the next post, I’ll stick with the spinal cord injury theme, and use it as a platform to explore musical instruments, so check back here for that in the next few weeks, before the month is over.

Why Wheelchair Users Should Have Personal Pilots (And Aircraft)

A few months ago now, a trip down to Orlando was set to be like any other vacation for one couple. This particular couple have made a name for themselves on social media for being inter-abled (in which one partner has a disability while the other does not). In this case, the guy is the one with the disability (a wheelchair user due to a rare condition called spinal muscular atrophy). If you would like to follow their journey, their YouTube channel is at https://youtube.com/c/SquirmyandGrubs. Anyway, this particular trip turned quite extreme when it was discovered that his wheelchair had been most unfortunately damaged on the flight. They documented their ordeal quite extensively, and just the sheer mention of it got me thinking: wheelchair users should have personal pilots (and aircraft) in their lives. Throughout the rest of this post, I’ll be exploring a number of questions and suggestions that may be helpful when approaching this rather unorthodox idea. So, without further ado, let’s begin our briefing in the departure area, shall we?

First, the pilots: they can be siblings, parents, aunts and/or uncles, nieces and/or nephews, cousins, spouses, or especially close friends. And depending on functional strengths and limitations, the user can become a pilot themselves; you can read about this very interesting aviation phenomenon at https://newmobility.com/pilots-planes-hand-controls/. Once someone is selected, and begins their initial training, their are a few, very important ratings they should obtain if in the U.S.: private, instrument, commercial, complex, and multi-engine. For more on pilot ratings, visit https://aviatorshq.com/20-pilot-ratings-endorsements-add-ons/. The private and commercial are especially important because they will allow the pilot to be paid, if monetary compensation is what the wheelchair user wants to do. Equally important will be the instrument; this will allow the pilot to fly in questionable weather conditions similar to those encountered on the road while driving. The complex and multi-engine may depend on the user and their chair. And that leads me into my next point, about aircraft.

The choice of aircraft will depend on a number of factors, and there are a few questions whose answers can help guide that decision. Does the user’s chair use electric or manual propulsion? If manual, is the chair capable of being disassembled, either by folding the backrest down and/or removing the rear wheels via quick-release mechanisms in the hubs? And when getting into and out of an automobile, does the user stay in their chair or do they transfer from it into a regular automotive seat? These are quite a lot of questions, so I’ll explore each possible answer and what that means for aircraft selection.

If the user’s chair is electrically powered, it will usually be quite heavy, and can’t be disassembled. This means that any aircraft chosen must have a heavier maximum takeoff weight and a wider payload weight margin. It should have a sizable volume in the cabin, with rather large doors and relatively few seats remaining. It should have a maximum takeoff weight greater than approximately 6,000 pounds but less than 12,500 pounds. Beyond this 12,500-pound weight limit, aircraft must be flown with two pilots, who must hold specific type ratings. Some examples of aircraft that could potentially be used for this include the Pillatus PC-12, Cessna 208, and others.

On the other hand, if the user’s chair is manual, this would allow the use of much lighter aircraft, generally with a max takeoff weight between approximately 2,000-4,000 pounds. In this case, we’re not so concerned with weight per se, but more with the ability of the user’s chair to be disassembled and for the user to transfer from it to an aircraft seat beforehand. This may be more difficult than in an automobile due to the greater height of aircraft seats as compared to automobile seats. If both of these tasks can be accomplished, then the user is able to fly in most 4-seat aircraft: Cessna 172 Skyhawk, 182 Skylane and 180, Cirrus SR-20 and SR-22, etc.

In contrast, if a user of a manual chair enters and exits an automobile while remaining in their chair, the same principle should apply to aircraft. In this case, a lift may need to be added. But the added weight of a lift is well worth it. For these users, a Cessna 177 or 206 could potentially be the best options. Like their larger relatives, they are quite expensive if purchased new, so a good idea would be to have a number of people own the airplane at one time and share it.

For some reduced cost, there are so-called “experimental” aircraft that a user can fly in, such as several in the Vans RV series, and the Airplane Factory Sling TSi; you can read more about them at https://www.eaa.org/eaa/about-eaa/eaa-media-room/experimental-aircraft-information. These are often built as kits, and some, like the Sling TSi, have a builder assistance program which can help; visit https://www.customaircraftbuilders.com/sling-builder-assistance/.

If you have read any (or all) of this post, you have probably noticed that most of it is conjectural: I don’t know if any of these ideas have ever been tested in general aviation, and if they have, I don’t know about it. Whatever the case may be, any user should be seated in the right seat, unless in the rare instance they are a licensed pilot and therefore need to fly from the left. This has happened in a few instances, but they seem to be few and quite far between. And as for me, I’ll be sure to share this post with as many stakeholders as possible: pilots, airport staff, aircraft mechanics, others with disabilities, really anyone who will listen.