Many of the people I know with a spinal cord injury have no interest in cure. In fact, I know very few paralyzed people that have even a cursory interest in cure. However, almost every person I know with a SCI has a far more modest take on paralysis. I cannot tell you how many times I have heard a person with a SCI say "if my level of injury were just a bit lower I could..." I have expressed the same sentiment--especially when I see a paralyzed person with excellent trunk control. Man I would love to have some working abdominal muscles. If I were a T-12 instead of T-3 I swear I would be president of the United Sates and richer than Bill Gates. Joking aside, the difference between a high thorasic injury such as mine and a low thorasic injury does not have a profound impact on lives. Sure life with a lower injury leaves one with more physical ability but it does not have a huge impact on one's life in in the bigger picture. The same cannot be said for cervical SCI injuries. The difference between a quadriplegic with a C-4/5 level of injury and one with a C7/8 injury is immense. A person with a C-4/5 SCI will need much bodily assistance-- help with transfers, dressing, relieving pressure on one's ass to prevent a pressure sore, and other routine aspects of daily life most of us take for granted--myself included. The killer for quadriplegics is time. Every aspect of their life takes more time.
Let us enter the world of quad grips. My friend Ruth who posts at Wheelie cAthlic send me a list of items marketed to the quadriplegic market.
1. Quad push gloves cost twice as much or more than weight lifting gloves.
2. Rim foam or vynl covering are hundreds of dollars and electrical tape is equally affective.
3. Quad reachers cost hundreds of dollars.
4. Adaptive eating utensils can be replaced by palm cuff type device.
5. Adaptive computer equipment is vastly over priced.
6. Head rests and lap trays are very costly.
7. Portable "quad hydration" systems are double or triple a camelback device.
I am not expert on quadriplegic equipment. However, I was struck by the number of small companies that exist that attempt to serve the quadriplegic market. Many of these small companies sell very expensive adaptive gear that appear to me to be poorly designed. Here is one such product that retails for about $150.
Another product that appears perfect for a horror or slasher movie.
Here are quad grips designed for handcycling:
The above quad grips all approach $500. Take a look below and tell me this product cannot be adapted to as effective as the $500 grips.
Give me a roll of duct tape, some dry cell foam and I bet in less than an hour I can have a person all set up.
The above are not even the high ticket items associated with life with a cervical SCI. I would love to hear from quadriplegics who have come up with innovative and inexpensive gear. I am especially interested in driving systems. Now that is about as high ticket as one can get.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Sunday, July 28, 2013
Posted by william Peace at 10:35 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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This topic could easily do with a whole blog unto itself! Oh my gosh, there are SO many issues.
There's the perennial "stuff money DOES get spent on, but that nobody really uses." For low quads, this would be the tenodesis splints. Expensive, custom-fitted - the equivalent of getting long leg braces for paras. They have some utility and do improve fine motor capacity, but since you can't push the chair effectively with them on, and they're a pain to take on and off, guess what? They gather dust, and meanwhile people can't afford the practical stuff they really need.
There's the "specialty product vs. normal consumer products" issue. One gets really stuck here, because as you say, the specialty products are so often clunky and look like they were hobbled together in somebody's garage (and often that's exactly how they originated) yet cost mind-boggling sums. But regular consumer goods fall just short of working... and good luck figuring out what will work based on product descriptions. For example, the use of the description "hands-free" to describe consumer products is widespread and, to any person who is functioning without the use of their hands, laughable. Hooray, bluetooth headsets are hands-free! (Except for that one little moment where you have to push that little button by your ear to, you know, answer the phone. Minor detail.) Touch screens are everywhere, and making life easier and smoother for millions of people with disabilities... if you can touch them. But if you need a special inductive mouthstick to make them work, and each of the three kinds available has a reason it doesn't work for you... oh well! It seems like every almost-perfect solution comes with that one fatal flaw.
The user-friendliness and reliability of the products and applications that quads need to use are comically inferior to what is possible. I look at the "gaming" world, and the way incredibly complex software just works. And works well. All the time. Because there's money in it, and the consumers would not stand for a clunky, unreliable gaming experience. Meanwhile, if you're a quad and need to use voice recognition software to get your work done, have fun with that. It will keep "learning" to understand your speech better, until the day it becomes so clogged with data that you have to give up, re-install it, and start all over training it. And meanwhile, it will crash Skype. These kinds of crazy-making problems could have been fixed years and years ago if these products were held to the same standards as the incredibly sophisticated crap we produce just to allow teenaged boys to pretend to blow stuff up.
Then there's the way that manufacturers of wheelchair and environmental control systems like to protect their competitive edge by making their stuff proprietary and incompatible, so that you can't actually combine the features you truly need from different systems.
A quarter century ago (when, for me, being an academic assistant to a quad meant not word processing, but scribbling hilariously tangled explosions of circles and arrows rearranging chunks of text on reams of yellow legal pads), it was easier to accept that the clunky adaptations were as good as one could hope for. Today, seeing what's possible in the world of mainstream consumer goods, the world of adaptive solutions feels more and more third-world by comparison.
It's little wonder that - as you allude to - people really do solve a surprising percentage of their functional issues with duct tape. Presented with a problem, and a choice between throwing money or adhesive at said problem for a comparable result, it's a pretty easy decision.
Lynn, As always you provide great insight. The quad world and gear used is not solid ground for me. I am always struck at how screwed people with a cervical injury are. Being a quad is time consuming and the costs involved steep compared to my life as a paraplegic. In short I agree a whole blog on this subject alone could exist. On this front do you read Wheelie cAtholic? It is quite good.
Don was C5/C6 Complete. He had been C6 when injured till a cleaner banged into his bed with a big electric polisher and the damage became greater. We learned to make things - Palm bands with a bit of Dowel stick was good for typing - thank God for spell check cause sometimes he hit many wrong keys. you could put a toothbrush in it or a biro if something needed signing - pretty crazy signatures but it worked for him...used these bands with a spoon (not a fork too bloody dangerous) A builder friend built two long benches for reading papers, computering etcetc - they were made to measure and only cost us the material. Of course we made tables etc higher...For drinking he had a large plastic jug with a lid and would stick a long "straw" in there about a foot long - this was made from the tubing of an unused (of course) night bag - and meant he could always get as much water without asking - if he wanted to water the garden or path he would strap the hose on with a crepe bandage - one time he got the controls wet and the chair started going crazy - he ended up against a wire fence - luckily someone was nearby... I know there is a lot more...because he had been very "handy" before his accident and could pull a car engine apart almost and put it back together we saved a bit - but could never figure out why electric wheelchairs cost as much as a cheap car, or anything for disabled or medical seemed to have hundreds if not thousands tacked on it...
I had to laugh in recognition Re: Lynn sentence on duct tape! Many times,one or the other of the pins that hold my walker together have broken. When it breaks, it is usually a sudden thing, and I am fortunate if I don't lose my balance and fall to the floor. To hold me for the (few days to a week) between ordering a new one and receiving it, I have used duct tape, with great success.
I had far rather do that, and wait for a new one for which I pay out of pocket, than have to go to the office of someone who in general, has very little experience of the needs of PWD, and explain why I need one... I am fortunate to be able to bear this cost , for the most part. But still, should what basically amounts to hollow aluminum tubing, some metal pins, and rubber feet cost $100 or more?
I get your point but you really need to rethink a bit. Many of us did a lot of what you said about using duct tape and other stuff to "get by" in place of having something we need. I have done this on many projects. Problem is if you want a more permanent durable solution you have to design and make something. Many times they will look like they were made in someones garage. Why? likely because they were! It is how products come to be. Does all this stuff cost a lot? Generally in the garage stage no. But the folks buying it want better. So a machine shop or fab shop is either hired or created, adding cost. Cost in improvements and in having a process done so it looks more "professional". Early stages the product is only made for a few. and the inventor does it all and for almost no profit. Just glad to be helping folks out. But after years of doing this it is consuming all their time. If they are to continue they need to get something for their time. So the cost goes up. Then retailers want to sell the item. The only way most retailers will be able to offer the product is if they can mark it up 25% minimum. But they expect the product to be readily available. This means the maker has to invest in the materials to make inventory. Generally 1/2 to 3/4 the final retail on the product. This often is money that is borrowed. Adding cost. Then they have to sit on the inventory. A web site can add over $1000 a year, business licence, tax accounting, web & phone service all add cost. Pretty soon the clunky thing you were making in your garage is costing double or better. But it is serving a purpose in a very small market that the maker is luck if they can make a few hundred bucks a month out of something they have vested thousands of hours in and may continue to work for penny's on the dollar just because they like helping the community.
I'm the inventor of QuadGrips. I am a c6/7 complete. 0 hand function, half my triceps, 0 trunk. At my level I experience the time wasting effects that para's don't get but still fair way better on independence than lower function quads. My story is very similar to what I described above. I used to look at disability stuff and think how over priced it all is. But having the opportunity to see it from the other side I can tell you straight up it is not always or often that the products are making someone rich. Get on QuadGrips.com and google the address. That's my 970 sq ft 2 bedroom 1 bath house. I drive a 10 year old vehicle with only hand controls(no fancy lifts etc.) My wife's car is a 20 year old vehicle. The value between both won't buy 1 new car. But I'm ok with that. We aren't out to get rich. In fact since 2004 I we have both volunteered most of our free time for a local non-profit serving folks with disabilities and we do a lot of specialty adaptions for 0 profit. But to keep our business going we need some return on our efforts. We do have to eat and we all know what medical equipment, meds, insurance, co pay's, etc can cost. The one thing about QuadGrips I can say is they are very durable, work awesome for 95% of folks and we stand behind them 100% if anything ever were to go wrong. If you buy them and they don't work you can return them in the first 30 days if you buy them direct from us at QuadGrips.com My wife tells me I could actually go get a job and make more money. I just have the thought that it will pay off in the long haul and we are helping folks get out and ride.
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