Robot Arm with Frickin Lasers!

[marydell]

So, here is the overdue update on the plan for Charlie's prosthetic arm.

We met with the nice people at the prosthetic & orthodic department of the Rehabilitation Institute of Chicago.  My sister rehabbed at RIC after her stroke, 35 years ago, and she was able to accomplish a huge amount there, so taking Charlie there was the natural choice.  Also they run a pediatric limb deficiency daylong clinic every few months where the kids can meet each other and see an orthopedist, a prostheticist, a physical therapist, and an occupational therapist all in one go. We'll be doing that in August when the next one happens.   Oh and also, as it turns out, they're a national leader in prosthetics R&D, including bionics (More info here).  So we're excited to be able to get Charlie started with them so early in his life.

Anyway, they said Charlie's a very good candidate for a prosthetic arm, and since he's sitting unassisted and crawling he's definitely ready for one. Since he is lacking the left elbow as well as hand & forearm, the beginner prosthetic arm will have the elbow fixed in the bent position, with a molded hand that has a manually-operated opposable thumb so that he can hold things in it.  It defaults to a closed position so he won't drop stuff.


We've chosen a body-powered arm rather than a myoelectric one--myoelectric (controlled by muscle signals & sensors) is cooler, but more specialized and harder to take care of and possibly harder to use, at first anyway.  The body powered arm will give him the body skills he needs to go in a lot of different directions with prosthetics use when he's an adult. So, once he's gotten used to wearing the arm & the associated harness, and using the hand for some stuff, he'll upgrade to a "voluntary opening" hand with a wired thumb, that will open when he moves his shoulders a particular way in the harness (probably in a year or two?). Once he masters a voluntary/wired hand, he'll be upgraded to a wired elbow as well.

As he gets older, he'll get new molded socket inserts a couple times a year, and a whole new arm mold about once per year.  The hands only come in a few sizes so he won't have too many hand swaps as he grows up.  However, once he's using the adult size arm/wrist mount, he will be able to use an amazing variety of specialty replacement hands.  My favorite is the camera mount.  The basketball hand is also pretty awesome looking: 


Once you let go of the idea of making it look or function like a human hand, all kinds of stuff is possible. 

The coolest thing about this first arm? We said we're not interested in a cosmetic prosthesis for him; we want him to feel his body is whole without (most of) a left arm, and that the prosthetic arm is a really cool tool.  They agreed with this--children who are born with a limb absence don't have the sense of loss that people who lose a limb do. The hand will be caucasian flesh color (it only comes in 3 colors, and that's the closest match to Charlie's skin), but for the rest of the arm they will take any piece of stretchy fabric I care to give them, and laminate it into the arm.  OMG SO COOL!  I have some dinosaur fabric that I think will be perfect.

The plaster casting of his arm will happen on June 10, followed by a couple of fittings and then ongoing physical therapy. YAY arm! Giving a weapon to a 1-year-old baby, possibly not awesome from the POV of the people around him, but overall this is going to be AWESOME.

Comments

[marydell.livejournal.com]

As I've said before, cosmetic prostheses come in every possible skin color, but we're not interested in sacrificing function for appearance. Since Charlie is quite pale, and more rosy than sallow, the caucasian skin tone is about as good a match for him as it would be for me.


I'm sorry to hear that my child's condition makes you uncomfortable and puts you in mind of Titus Andronicus. I don't think my journal is the right place for you to unpack that.

[elettaria.livejournal.com]

Your child's condition doesn't make me uncomfortable at all, and I'm sorry if I gave that impression. It was specific images of prosthetics that looked like flaps in a place where you'd expect a hand, and it was one of these reactions that hits you for about half a second, probably relating to a subconscious fear of squashing your hand in something. As for Titus Andronicus (which I've studied a lot, so it leaps to mind), it was an image of four disconnected hands alone, so yes, that does look like artificial representations of severed hands, and severed hands are (unfortunately) commonly used as an image of horror in this society and have been for at least the last four centuries. I'm mildly squeamish myself but I don't think it's ever applied to disability stuff (I was fine when my aunt had her eye removed etc.), it's more that I hide my face when there's gory stuff in films. But I have met a few people who really do get wound up about eyes or hands. I got my hands stained orange and grey from henna and indigo once, and I had a friend who was really bothered by it and said he couldn't look at them. And as for eyes, a great many people get the shivers at the mere idea of contact lenses! I was just trying to think my way through why that's a common area for fear, and I assumed that you were engaging with this because your suggestion of putting dinosaur fabric on the prosthetic arm sounded to me like a way of deflecting this sort of anxiety, clearly signalling that it was about fun and empowerment. (Incidentally, I have no idea what sort of fabric would work best, but quilters' fabrics come in a huge range of designs and might be a good place to start. I can't remember if I've seen dinosaur fabric, but I've seen huge numbers of very cute animal fabrics, including dragons, and the pattern is likely to have a small enough scale, and have the dinosaurs at different angles so it wouldn't matter that it was an irregularly-shaped piece.)

I'm sorry, I've been disabled for twelve years and I'm used to thinking about negative perceptions as well as the positive aspects of disablity aids, because whether I like it or not, I have to deal with those perceptions and try to head them off, and a lot of them are based on fear. I'm fascinated by constructions of and social responses to disability, I didn't realise you'd find it upsetting to look at this angle, and it was tactless of me considering that this post was about celebration. I'm also interested in the "cool and exciting toy" response which a lot of people seem to be exhibiting, to give a less emotionally charged example. Or the way that children often react more positively than adults. Or the way people use images from sci-fi, often with a heroic slant, as a way of approaching prosthetics etc. more positively, whether it's you talking about a "robot arm" or my stepdad, who's had a knee replacement, joking about being a "bionic man". Anyway, I have a terrible habit of analysing anything in sight and did barge in without thinking it through enough here, so please do accept my apologies.

And now that we've established that we're not trying to have a fight here, am I allowed to dissolve into a puddle of goo at the adorable photo where you're holding hands?

[marydell.livejournal.com]

I know you've been dealing with disability issues for some time, but you're displaying, and defending, negativity toward deformity and/or traumatic injury which is ableist. It is not ok to be squicked by prosthetic hands that don't look like hands because they put you in mind of traumatic injury, AND SAY SO TO ME in a post where I'm talking about how excited I am to give a hand like that to my son. Those "prosthetics that look like flaps in places where you'd expect a hand" are part of his condition, and I find them delightful and charming. Pointing out that they or the other hands on the TRS site remind you of horrifying violence is ableist, and frankly is seriously harshing my squee. I'd like this discussion to end right now. Thank you.