Angel Harps: Eh?

Anyone who uses assistive technology knows that a lot of the time it doesn’t come cheap. Sometimes there’s nothing you can do about that. Take the Maltron keyboards, for example: they are beautifully designed things, even lifesavers when it comes to getting work done. But because they are very specialized in both market and mechanics, their sales volume is lower, making it difficult for the price to come down. Regardless, since they are the only ones of their kind, if you absolutely need the ergonomics they offer you’ll do whatever you can to eventually purchase one.

However, if you read my posts about low-tech devices, you know I appreciate it when I find something I can appropriate. It’s always nice to know that something can turn out to be disability friendly even if it wasn’t known or explicitly marketed to be. That’s why I got so frustrated, in the wake of happily reviewing my lap harp, when I saw this article a friend sent me.

The article was about Angel Harps, a nonprofit that seeks to raise money so that it can give “specially designed” lap harps to deserving school districts or individual children with various disabilities. That in itself is fine, especially since so many schools are facing budget cuts and the music and art programs — not to mention special education — are often high on the cut list. Anything that helps you get supplies, I guess. The effort was started by Dianna Woodley in 2003, who says that playing the harp cured her plantar fasciitis, so she wanted the harp to help with other disabilities. Admirable, certainly. I am seeing flags with the execution, however.

Dwight Blevins says that he created “a small, 15 string harp that can be laid flat on the lap or placed on a small table or chair for playing” because he was so inspired by Ms. Woodley’s idea. How much does his harp cost? $800. Eight hundred dollars for what looks like a large Music Maker or Melody Harp except that the edges fan out and there’s an angel carved on it, and the strings are nylon. I am puzzled with this — not his harp, per se, but the presentation.

First of all, the lap harp in all its guises — Perepelochka, Music Maker or Melody Harp — has been around for decades. The lap harp is not a new invention. It just hasn’t been actively marketed as something disabled people can use. Second, and most odd, is the exorbitant cost. Granted, Blevins is a well-known harp company; I’m sure the lap harps are excellent quality. Even so, there is no way a lap harp could cost $800, even handmade and carved. A full Celtic harp certainly could, but not a little lap harp like this — the wood would have to be ridiculously rare. A T.K. O ‘Brien carved harp might set you back $100 at the most, but only if you really wanted to be that fancy. Same with a $60 or $70 Bill Berg harp. Otherwise, a Hearthsong Melody Harp is $40 and a Music Maker is $33. Why petition for an $800 harp when we can get the equivalent ourselves — okay, minus the angel — for less than $50? If you want nylon strings, inquire as to the gauge and buy a set. These harps may be comparatively cheaper, but that does not mean they are junk. I speak from experience.

Ms. Woodley’s site gives the impression that the harp is like a Maltron — that is, something totally new for disabilities and thus the only one of its kind. That would be the only way to justify such an extravagant price. Unfortunately, Ms. Woodley’s presentation is a bit misleading, though her intentions are good. I’m not opposed to people wanting to help others acquire assistive technology — face it, some of it is very expensive and insurance won’t always cover it. If help is there for those who want it, go to. I just don’t understand why $800+ is needed in this case, when there are cheaper but equal quality alternatives available.

Not that wanting to give out harps is a bad thing — far from it. But if one wanted to distribute as many as possible, as Ms. Woodley declares, would it not make more sense to use the money raised to buy/commission multiple good quality but less-exorbitantly-priced harps? $800 gives roughly 11 carved Berg harps, or 8 O’Briens, or 20 Melody Harps, or 24 Music Makers. I know nothing about operating charities, but that ought to be possible. If not, excuse my ignorance.

PLEASE NOTE: I am not saying Ms. Woodley’s site is deliberately misleading. I just think her job would have been a little easier if she had done some homework. I am also not saying that a musician with a disability wouldn’t necessarily want a Blevins harp for himself or herself. Such a person may well appreciate the gift; Blevins has a great reputation. I am saying that, for a more casual recipient, it looks a little bit like overkill. Especially in a classroom setting… I digress, knowing what kids get up to… But I suppose the “miracle” or pity factor would wear off if the instrument wasn’t made out to be so “rare.”

Sew Able: dolls with disabilities, for kids with disabilities

While I was never a girl who played with dolls — I was the type who sifted pennies through my fingers and made up stories about colored rocks — I came across this company while doing some Christmas shopping, and I’m very impressed. Your opinion of making dolls disabled may vary, but I applaud Sew Able for what appears to be an enormous amount of care and effort. Sew Able is a company that specializes in making dolls to reflect children who are typically not modeled in the toy market: amputees, wheelchair users, and children receiving chemo to name a few. When you purchase from them, part of the proceeds go to various hospitals. The website has a link listing where various dolls have been “adopted,” similar to the Cabbage Patch angle, which is interesting to see.

From the pictures on the website, these vinyl and cloth dolls appear to be of the same quality as the popular American Girl product line. They are 18 inches, which is standard size for many doll clothing lines, with blinking eyes and combable hair (if applicable). The difference is that their accessories include prosthetic legs for either above or below the knee, crutches or wheelchairs, or wigs or bandannas. (The company notes that prosthetics are best handled by children who know how to use them themselves.) You can also purchase doll physical therapy equipment. Also, the site has a section targeted towards boys, cheerfully not stereotyping dolls as a girl thing. Nice.

Lest you think that these dolls are merely medical, take a look around the rest of their site. Like the American Girl line, these dolls have entire furniture, clothing and accessory collections by theme: holiday, school, sports, and so forth. The clothes will fit American Girls as well as the Sew Able dolls. These kids have some active lives.

I like this move. We think nothing now of having dolls with different skin colors. Why not have dolls with different bodies also? (Of course, the case could be made that all dolls are disabled simply by virtue of being unable to move without a child’s hand behind them — and let’s not forget the debates over Barbie’s disproportionate leg size or her possible anorexia.) Maybe not all children with disabilities want to see dolls that look like they do — maybe they want a regular doll because real life is enough without a pretend disability too. But I think there are also a lot of kids who would feel better by seeing themselves represented. So, kudos to Sew Able for promoting an active, sensitive portrayal of kids with disabilities through dolls.

Assistive technology for making music: low-tech

Contrary to the state of my hands, I have always wanted to play music. Sometimes there’s just no other way of getting rid of pent-up energy. Stimming to recorded music just won’t do it sometimes. If anyone thought to suggest music to me, they would usually suggest something like hanging a triangle from a stand, or tapping on a woodblock with a wooden stick. I discounted the suggestions — I am much more of a string person. I prefer bowed strings, but at this point playing any bowed instrument is beyond me. However, I finally found an almost hands-free stringed instrument which, though its appearance is simple enough, is capable of playing actual melody. It’s easily found and relatively cheap, too. I am just thrilled. 

The instrument itself has several names. Officially, it appears to be a Russian gusli. One lay term is a lap harp (not to be confused with the Celtic variety). Another is a plucked psaltery or dulcimer. Another is board zither. I think my favorite name is the brand given to the one I have, which comes from Belarus. I can’t input Cyrillic script, but it looks like “Nepenenoyka” and is pronounced something like “Perepelochka.” This means “little bird,” or possibly “little quail.” Since nobody can agree on what to call it, it is often marketed as a “Melody Harp” or “Music Maker.” Very often, it is assumed to be a toy (in fact it won a platinum Oppenheim Toy Award and the Parents’ Choice), but make no mistake — while it is very good for children because it doesn’t require formal music knowledge, it is a real musical instrument. Adults — particularly dulcimer players — seem to like them as well, and some luthiers make them as seriously as they make their fiddles and guitars.

The Perepelochka is simply a hardwood trapezoid with 8 strings wound across it, but in such a way as to create 15 strings. There are 15 notes. The instrument is often tuned to make two octaves of the G major scale, but can be tuned other ways to match the song you want to play. It is tuned by turning a key on the pins. A T-shaped handle key is better if you have trouble gripping, and should be easy for a helper too if you need to ask. While the instrument can be held, you do not need to — setting it on your lap or a table is fine, and gives it projection besides. The instrument has a kind of faraway Middle-Eastern twang, but reminds me also of noon and 6 o’clock churchbell tunes with the resonance.

You do not need to finger the strings, because the scale is already in front of you; each string is a note. To play the Perepelochka, you can do several things depending on your disability. If you have full use of one hand, you can pluck the strings with your separate fingers. If you are able to hold a guitar pick, you can hit the strings with that. If you’re not able to hold a guitar pick, there are ringed picks that you can wear on your thumb. Or, you can glue the pick to something, like a wooden dowel, and slip it into a utensil cuff if you have one. That way you play it using your arm, not your hand. If you have a typing stick, you may not even need a pick — just slip the typing stick over your hand and use that for a more muted “practice” sound. If you cannot use your arms, you could use a mouth stick. I don’t know if using a mouth stick would be awkward if the instrument were laying flat, but if it were, there are articulating arms. I would imagine that you could mount a lap harp also, as long as you’re careful not to crack the wood. I’m not sure, however. Failing that, you could try propping it vertically against something.

The “sheet music” for the Perepelochka isn’t the kind of sheet music you’re used to seeing. There are no clefs or staves, and you don’t need a music stand. The music is shaped like the instrument, and you put it underneath the strings. The notes line up with their corresponding strings, and you basically “connect the dots” by plucking the strings in order. Much of the available sheet music is children’s tunes, but there are also Russian, Irish, and Appalachian folk tunes, as well as some popular tunes, carols and others. If you do have some musical knowledge, they have blank sheets on which you can diagram transcriptions of songs you like. Or, if you have good pitch, you can play anything you want by ear if the keys fit.

The lap harp is sold by several people under several brands. Hearthsong, a mail-order toy company, sells a Romanian-made “Melody Harp.”  (NOTE: the “Melody Harp” is tuned for C.) First Act used to sell a lap harp as well as a smaller toddler version called “Discovery,” but apparently it has been discontinued except for the mini version. (You can, however, still find tuning information and MP3 samples on their website.) First Act lap harps are sometimes found on eBay, often still in their boxes. If you feel like you could get serious, Bill Berg and T.K. O’Brien are Appalachian luthiers who make lap harps either plain or with carvings.

As far as I know, outside of thrift stores and eBay, the only place you can find the “Music Maker” Perepelochka-brand lap harp is the European Expressions website. PLEASE NOTE: European Expressions offers a more decorative (and more expensive) “adult” model called the Yerbonitsa, but as far as I can tell there is no functional difference between them except that the Yerbonitsa is slightly broader. The number of strings as well as the tuning are identical. (And frankly, I don’t think the Perepelochka looks childish at all. I like that plain red bird. Besides, Berg’s and O’Brien’s harps are grownup and they’re shaped just like it.)

Disability education: computer games for kids

While not as complex as the Skallagrigg plot its concept echoes, a set of free European computer games and exercises can teach children — or adults — a tiny bit about getting around with a disability. Handigo offers 3 character choices, each a cute marshmallow-like creature trying to get somewhere with a different disability.  Speedigo uses a manual wheelchair, Regoligo is blind, and Reflectigo has a vague learning disability that alters his perception of objects.

Speedigo and Regoligo move around with the arrow keys and use the spacebar to honk their horn or tap their cane, respectively. Regoligo’s area is completely black until she moves, and then parts of her grid will light up. Although unexplored areas are black, you will see sounds that help orient her — “vroom” or “tap” or music notes, for example. On the way to their destination, they pick up stars for points and try to avoid obstacles such as traffic, walls, and other people. “Other people,” except for the friends they’re trying to reach, consist of what seem to be obnoxious little marshmallow bullies who follow them around on purpose, stand in their way, or — I think — point and laugh at them. Speedigo can honk his horn to try to make them move, but I’m not sure what Regoligo does. I haven’t tried tapping her cane at them yet. When they bump into each other, they cry. If you move fast enough, you can avoid them — Speedigo can literally burn rubber.

I wasn’t really clear on how to play the game for Reflectigo — you have to use the mouse and click on the right object, such as a toothbrush. But there was no toothbrush.

All of the characters’ games are timed.  This game was meant for so-called “able-bodied” players, but it may also be useful for disabled kids to learn about disabilities different from theirs. Unfortunately, because of the game’s target audience, using an alternative input device can have mixed results. If you use a joystick, you may not be able to play the game for Speedigo or Regoligo. It is possible to play this game by voice using Dragon’s Mouse Grid and keypress commands, but the characters will move a little bit more slowly because of the time it takes for the command to go through and the fact that you can’t hold down the keys to make them move faster. If you are playing Reflectigo’s game using Mouse Keys, that will also be slower.

Handigo’s website also includes exercises for learning the Braille alphabet and testing how well you can lip read. The latter was particularly eye-opening for me — I’m able to lip read using the captions on certain DVDs for clarification, but since those are actors the articulation is a bit better. In the exercise, you only see a video of an ordinary person’s lips. You are given a set of scrambled words, which you must put in order according to what the man is mouthing in the video. I flunked.

While the games offer an opportunity to show how those with disabilities can compensate, e.g. through using a different sense, I felt that the way I identified with the characters the most was trying to avoid the bullies. While the bullies are bothering you, you cannot move and you lose time. The bullies are also surprisingly hard to get away from. This provided the clearest sense of frustration I have ever gotten from a video game. These bullies are valuable. There is nothing worse than a kid frustrated with his or her video game, or when someone won’t let them do something. For some kids, that may be the way to reach them — if they can experience frustration that way, they may think twice about bullying a disabled child in real life. Wishful thinking, probably, but I’m feeling wishy-washy today. You can find the games and the exercises at this site: http://www.handigosolidaires.com/en/goodies/index.html

Dyssemia and nonverbal learning disability

Technically, dyssemia is a coinage from two psychologists — Stephen Nowicki and Marshall Duke — to provide a name for a subset of difficulties found with nonverbal learning disabilities/disorders. It’s not quite as official as saying “nonverbal learning disability.” Most people, instead of calling it dyssemia, just call it NLD or NVLD. However, while I don’t always agree with the psychologists’ blanket statements in their books, I am glad that they coined the term, dated or vague or lesser-known as it may be. While using “dyssemia” runs the risk of invoking what I call “syndrome satire,” I think in some cases it might be more accurate, especially for adults. [Aside re: satire -- see Anne Karpf's The Human Voice: the Story of a Remarkable Talent. Her comment on adult dyssemia: they used to call it other things, "misanthrope, for example, or antisocial bugger."]

The main reason is simply that the phrase “learning disability” almost invariably connotes school-age children, and much of the diagnosis and treatment revolves around performance in school subjects and the necessary accommodations thereof. The proportionality of the literature, too, makes learning disabilities almost the exclusive property of children. I’m unclear about what happens to the grown-ups. Once a child grows up and leaves school, they may still have a learning disability, but is it incongruous to say so once school learning has stopped? Or, as in my case, there may be an adult who has already gone through school without being diagnosed or treated, and may get a diagnosis or recognize it later in life. Since the parts about school performance no longer apply, what do you call it? So, I like “dyssemia” because it focuses on the more general difficulties between brain and body, which exist outside of school. Anybody else have any thoughts, or terms you like to use?