Building a life solution for your daughters

September 16, 2004 5:43 PM

Normal for Us: The Millter Twins This is a pretty amazing documentary, made by Eric Cain for Oregon Public Broadcasting, about twins Michelle and Mariya Miller and their family. The girls were born with Spinal Muscular Atrophy and therefore have never been able to walk. The parents were determined to have their daughters live life and so developed unique motorized transports and a home that accomodates their needs. In a tiny town in Alaska. Talk about pulling the tears right out of their ducts!
posted by billsaysthis (12 comments total)

Seriously, this program never moves into the treacle territory and I've posted it in case you can still catch a showing, which is likely given the wacky programming of the Peeb. I was surprised, though, not to find much of any other weblinkage to include.
posted by billsaysthis at 5:45 PM on September 16, 2004

This is awe-inspiring. My mother, who has MS, is wheelchair-bound and I'm always trying to think of ways to make her life easier.
posted by camworld at 6:30 PM on September 16, 2004

I was going to chime in with a thought or two, but I kept finding myself typing "well, not having seen the film..." Kind of a bummer that. I guess the only thing I will say is that I'm not surprised to see this kind of thing happen in a rural area. Folk out in the sticks are very often quite a bit handier than the city folk. I know y'all think you're slick with your palm pilots and your LED headlamps, but have you ever had to cut down a tree, prime a pump, terrace a field, or BUILD A WHEELCHAIR WITH FRICKIN SHARKS AND LIKE LASER BEAMS OUT OF TWO RADIOS, A HIGH CHAIR, AND SOME GOLDARN LEGOS? DAMN STRAIGHT, BOY.

Colonial House is pretty cool too if you can catch it.
posted by scarabic at 8:19 PM on September 16, 2004

My mom's wheelchair functions quite well as a death dealing machine. Her current chair (in its second iteration) weighs 300 lbs. It gets up to 16 mph on smooth surfaces and can elevate 18" and tilt back 45 degrees.

The first iteration of her chair died only after being dropped out of the side of a 747 onto the tarmac. The batteries exploded and the chair caught fire, melting the frame to the tarmac.

When I was a toddler her chair had added function as a always-warm lap and as a mighty chariot of doom.

The apartment I've grown up in since I was a baby subsequently has damaged or missing plaster or moulding on the lower three feet of every single outside corner.
posted by blasdelf at 9:48 PM on September 16, 2004

I was going to chime in with a thought or two, but I kept finding myself typing "well, not having seen the film..."

I have seen it, and it's simply astounding -- amazing -- words truly fail me. I wish there were more people like these parents and kids.

One thing that struck me while watching it [a year or two ago] was that if these people (the parents and a family friend, a pilot, I believe, who also did much of the metal fab and engine work on the chairs) could whip these chairs together out of duct tape and popsicle sticks, WHY are so many other kids with limited-movement disabilities still stuck in such low-tech, low-function wheelchairs? Certainly there must be some biomechanics outfit who could mass-produce chairs such as these, which could both improve the lives of people who use them and possibly give the Miller family a little income from patent licensing . . .
posted by wdpeck at 10:16 PM on September 16, 2004

This was a great documentary. These girls are a hoot--really neat kids. I think you're right, scarabic, about the rural aspect, but I was also struck by the Alaskaness of it. That extreme "we can solve this problem", thinking outside the box, etc. attitude. And a neighbor going way beyond just being neighborly. Those chairs are amazing. Your libraries might have the film on tape. It's really interesting and worth hunting down.

blasdeff--I have fond memories of my uncle popping wheelies with his electric chair with me in his lap. Also the family cabin had a slightly too narrow hall and the walls still have marks from his wheels. As far as I know, they still haven't been painted over even though he died close to 20 yrs. ago.
posted by lobakgo at 10:31 PM on September 16, 2004

if these people ... could whip these chairs together out of duct tape and popsicle sticks, WHY are so many other kids with limited-movement disabilities still stuck in such low-tech, low-function wheelchairs?

I appreciate the inspiration people get from this story, but you can't have it both ways. You can't be amazed by the impressive accomplishment of this one family, and simultaneously incredulous that not all kids have it so good. Most people probably don't have the financial means or knowledge to do it. No corporation has found the capital, engineering, and management combo to make this profitable. Most of the Americans who would need such a product probably couldn't afford it, because our healthcare system sucks. A plucky family in Alaska can't change all those facts.

Customization has got to be a huge part of this. Everyone's needs and limitations are different, making mass-production of something like this very problematic. In such a case, being the child of the engineer pretty much guarantees you're going to get cooler stuff than mass industry puts out. These kids are lucky.
posted by scarabic at 10:55 PM on September 16, 2004

You can't be amazed by the impressive accomplishment of this one family, and simultaneously incredulous that not all kids have it so good.

I didn't say all kids should "have it that good." I said I'm shocked that some biotech developer hasn't licensed the fundamental design of these chairs, since they obviously offer far greater mobility than the decades-old standard electric wheelchair, and the very successful working prototypes were built by lay people in their garage out of household materials and stuff you could buy at Home Depot.

Most people probably don't have the financial means or knowledge to do it. No corporation has found the capital, engineering, and management combo to make this profitable.

Have you priced a child-sized electric wheelchair lately?!? Do so, and then tell me there isn't 1) a profit margin and 2) room for improvement without dramatically increasing the cost.

Most of the Americans who would need such a product probably couldn't afford it, because our healthcare system sucks.

I think not. Most of the [North] Americans who would need such a product would or could be referred to a Shriner's Hospital when they were children, and the Shriner's Hospitals do not charge, ever, for their services. My son receives services at one.

Rather, I suspect it's more likely that the ridiculous FDA process to approve a product for use on live people is too onerous and costly. The Miller-style chairs would vastly improve the quality of life for those who need them, but there aren't enough who need them to achieve critical mass to make it worth a company's while to pursue it. I wonder if this wouldn't be covered under the FDA "orphan drug" program . . .
posted by wdpeck at 12:02 AM on September 17, 2004

I caught this show, I thought about a year ago, and this family kicks ass. The whole house is modified to make the girls lives more normal for them, and they rip around on those wheelchairs.

The video footage documenting when the girls first figured out they could extend their seats out, and then bounce along, like walking on the moon, was amazing.

And ten minutes later they were getting into demolition derbies with each other. Ten minutes after that the one girl was working on training her horse.

I can highly recommend this documentary to everyone. And while I will agree with scarabic, these kids are lucky to have these parents(and their mechanically inclined neighbor), I felt lucky just to get this little glimpse at these girls. They're really something else.
posted by dglynn at 12:03 AM on September 17, 2004

My mom was really lucky. She had her old wheelchair for 15 years, and it was disintegrating, she found out that the insurance at her new job would fully cover a new wheelchair every 6 years or so. Her new chair cost $35,000 and ended up being fully covered by the insurance.

Also, Screw BMX! It's all about the eXtreme Manual Wheelchair. XMW provides fun and exitement for all, not just the disabled.

Excuse me while I wheelie around the house on my mom's backup manual chair.
posted by blasdelf at 10:29 AM on September 17, 2004

At the end, the narrator briefly mentions that the dad and friend are looking at commercializing their creations but because of their medical nature are kind of stuck in the lengthy, exhausting, confusing FDA approval process.
posted by billsaysthis at 1:16 PM on September 17, 2004

Yup, for it to be an FDA approved medical device, it would have to be "safe". Yet, as the father says in the movie, he is very happy that his children have the opportunity to get skinned knees, just like any other children. I imagine that automobiles couldn't get approved as medical devices.
posted by loafingcactus at 2:14 PM on September 19, 2004