Saturday, December 22, 2007

If babies were all considered disabled

This morning I woke up thinking, "What if babies were treated as the disabled are treated?"

What if infancy was medicalized the way that old age is medicalized?

Pregnancy would be an embarrassing, extended disaster. It would mean a person was about to go down to the very bottom of our economic system. You'd be quarantined in your home by governmental order. In order to go out in public, you'd have to prove you don't have a dangerous infectious disease that makes your stomach swell up. You'd get doctor's signatures send in forms to your insurance company and the government to declare you were pregnant, and every couple of weeks you'd have to renew those forms.

Glossing over labor and delivery, let's consider what happens when you've got a baby. It can't walk! It can't eat food! It's disabled, poor thing. It needs special nutritional supplements that can only be prescribed by a doctor. It also needs a special device called a stroller which costs maybe five or ten thousand dollars. You'd apply through Medicare to get one. Maybe they won't approve one for use outside the home! There's stroller stores, especially online, but wow, would you buy a Bugaboo stroller that cost $5000 without getting to see it first and whether it would be good for your situation, or would fit in your car or whether you could lift it up? By the time your prescription for the "stroller" had been approved by doctors and you'd proved through several insurance company and social worker home visits that you indeed had a baby, and by the time the stroller arrived, your baby could walk. Oh, you could rent a basic stroller from a medical supply store for 10 bucks a day, but it would be MADE OF LEAD.

In some ways you feel that the doctors and social service agencies have a bit of an attitude that if they delay long enough, the problem will shift, and disappear. Just as they act like older people or people with disabilities are going to die soon anyway, so why are they fussing so much about having this wheelchair, or ventilator, or home health care? If they wait long enough, the problem will disappear.

Instead of this medicalized model of the distribution of goods and services, we have Babies R Us, giant stores full of shelves where you can try and buy all manner of highly specialized products for babies. In fact this industry is fairly new. It was created when companies realized that babies change their requirements and abilities every couple of months and that there were people who would buy all new junk for them. Instead of carrying babies in slings or on our hips and requiring that cars have seatbelts, we have 3 different sizes of car seat and a million varieties of strollers good for differerent ages. We have cribs and playpens and Pack-n-Play and Exersaucers and those bouncy things that go in doorways.

Disabled people, and older people, are a similarly lucrative market. The way the market is utterly sucks. There is no Crips R Us or Spazzmart where I can go browse the shelves of fascinating bright colored crap. INstead, I was at a sort of auto body shop warehouse wheelchair store, with a couple of mechanics who order stuff off the internet for me and who guard the knowledge of how to fix wheelchairs jealously.

You can order wheelchairs off the Internet these days but wheelchair stores haven't change their model of trying to make a profit. And from what I can tell they are failing to make much of a profit. Or if they are it's at the top and the store doesn't reflect it.

Seriously, it's as if we all bought our cars from the skankiest auto repair shops, and there weren't really any sorts of customizations or accessories we could put on them. There wouldn't be any auto parts stores. Right now, I can think of at least 3 big auto parts stores within a mile of my house, and every hardware store, Target, and drugstore has an aisle of junk to bling out your car.

I put my hope in the baby boomers; as they all age, they will expect to be able to cruise the aisles of the CripMart and get flowered cane tips and colostomy bags to coordinate with their power suits.

26 million Americans have a severe disability. 1.6 million people use wheelchairs, and I'd bet my boots that many more people would if they could: if using a wheelchair was shown as useful, cool, empowering, for real, and if old people didn't have to jump through 20 million hoops to get decent ones that don't weight a hundred pounds. Instead, older people limit their activities and hide their struggles, ashamed, and scared to let anyone see that they might need help, because our system of "help" is so demeaning, dehumanizing, and awful that they'll rot in an armchair in front of their televisions for 10 years till they die rather than admit that they might need a walker. It's not stupid pride. It's a reasonable fear that they will lose whatever independence and autonomy they still have.

I was talking with people about this who argue that maybe the market is limited, so companies don't think they can make a profit. But it's not all that limited. There's something like 5 million babies born every year, and look at that market in baby stuff. If you look at who's elderly in the U.S. Census the numbers are completely crazy. And in fact... even if you assume that disabled and elderly people are not going to be able to afford to buy this stuff, they'll have relatives who might be able to.

Having there be real competition to build and sell this junk will help bring the prices down. In 1984, there was no market for "mountain bikes". Now there's shops with them everywhere. Though I couldn't find how many are sold in the U.S. in a year, I wonder how those numbers compare to the potential wheelchair market? My point is, someone is missing a giant capitalist opportunity.

How hard it was for me in the 90s to get my first wheelchair! On the advice of a social worker, I stole one from the hospital, the one I was in as I sat in her office crying and she told me she couldn't help me because my diagnosis wasn't solid. My second wheelchair, that I got from a fellow student: one with good insurance. The way that if you have a nice chair, other disabled people look you up and down and guess, "Car Accident?" because only people with good insurance can have nice wheelchairs, and good medical insurance is so very, very rare, while car insurance companies for some reason are likely to be more decent and pay up for wheelchairs promptly, covering the entire cost. The few decent wheelchairs that exist are passed from hand to hand, often through charitable foundations.

Ruth, at A Different Light writes very well about civil rights, human rights, and disability, for example in A Matter of Life and Death.

Then we have people who say they want to die because they cannot get out of their homes because there have been In Home medical equipment restrictions or they can’t afford medical equipment. Their wheelchair breaks and they can’t get another one so they are immobile. This leads to depression. Perhaps their caregiver is an aging parent who can no longer care for them - or dies. All of these changes make disabled peoples’ lives unmanageable and can make suicide look like a way out.

In the last week or so I read through all of Ruth's archives on this blog, and through some of them on her other blogs. She makes many good points about the consumer model vs. the medical model: try here in Seeing advocacy as a tool and in On distancing from the disabled. I realized over this past week how the medical and charity models are related -- and how wrong they are.

Let people choose for themselves what they want and need!

If you would like to do a useful thought exercise, extend my stroller model to thinking about chairs and cars. People sit in regular chairs: office chairs, kitchen chairs, armchairs. There is no reason that they have to. You might argue if you were from another culture that it would be healthier if we sat on the floor or learned how to squat on our heels. (And they'd generally be right). Likewise, if we just walked places, or ran, or biked, we wouldn't need cars to get to work. Yet... wanting to sit on a chair or ride in a car does not make a person "disabled". But even people in dire poverty are often able to scrape up enough money to have a car and certainly to have chairs. If those things were only available to people who have the health insurance of the insanely privileged, our entire societal structure would weaken. I'd extrapolate this to say that if we made it easier for the disabled and elderly to get assistive technology and mobility devices, it would strengthen our entire society.

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Friday, December 14, 2007

Down with keyboards, down with pants!

I was thinking today about my silly invention of "smart pants" so that people could just type on their pants. Then I realized something crucial:

Who needs pants!

Seriously, to hell with pants! Down with pants!

Not to mention down with keyboards.

Instead maybe we'll have little motion detecting rings on our fingers and will just make the barest hints of typing motions. The micro-intent to move will be sensed by the set of rings with tiny wireless transmitters. Or for the prototype, you could have the rings wire up like flexible brass knuckles to a bracelet with the transmitter.

So if I end up like this eventually, I won't have to type 15 words a minute, and I hope also not to talk like a Dalek.

Why have typing motions at all, then? It might be important to have some kind of physical motion and body memory.

And as I contemplate this Ankle-Foot Orthosis that will soon be mine, I wonder why the thing, cool as it looks (yay for rehab equipment with style!) doesn't have all kinds of electronic sensors in it. I don't ask for it to move my foot around, or walk for me like a real exoskeleton would. But I WANT ITS DATA. Data, goddamn it! Think of all the cool data it could be collecting on my gait, on the strength of my hamstrings as my back toe is pushing off. Instead of whining that as the day goes on my leg gets weaker, I could just have a handy graph on my blog so that anyone who cared to know would see how well I'm walking. I noticed at BlogHer that there were exercise pedometer sorts of things that upload and track your workouts on a website and even on social sites. How about for rehab too?

I hope to see some of these mad inventions in the next few years.

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