Thursday, November 15, 2007

My homework for an ATACP module

This was an answer to a question for my ATACP training. We were to take a field trip in our community and observe accessibility. Here is my answer:

I decided to observe accessibility on my own field trip between Kansas City and Boulder. I have rheumatoid arthritis and am starting this trip after sort of an upswing from a summer flare, but I’m exhausted from taking care of family obligations.

The hard thing about an invisible disability is trying to distinguish between what I need and what I can get. For instance, I circled the remote parking lot, not wanting to take a disabled spot, despite the fact I have a tag. I don’t usually park in the disabled spots unless I am particularly sore or tired. But I realized I would be in satellite parking, alone, in the cold, possibly at night, while trying to manipulate luggage. The disabled spots were close to the bus stops and security shacks with nice curb breaks for my rolling suitcase. So social factors had a bit to do with it. Still, if I felt the potential to be a sitting duck, I think a person with a wheelchair would be even more vulnerable.

The remote parking lot bus was wheelchair accessible, but it was cramped and crowded and would be hard to negotiate with wheelchair.

I still don’t have my folding scooter and honestly, the remote parking would have been more difficult with a scooter.

Kansas City airport is relatively compact so I didn’t think about the scooter again until we got to the gate. I flew Southwest airlines and looked at the people standing in line and decided to ask for a pre-boarding pass. I had never asked for one before. The people at the counter were great and did not give me a hard time. I didn’t have to justify my blue pre-boarding card at all.

Until it came time to board. The cattle call began. All of the people standing in the A line looked me over as I passed in front of them. Ugh. I wished for the scooter so they would leave me alone. I’ve never felt so much hostility. Yet, as tired and sore as I was, I was so grateful to not have to use my little bit of energy for fighting for a seat.

I really wished for a scooter in Denver. It’s a huge airport. I paid attention to things such as whether or not I could have negotiated the gap on the transit system with a scooter. I don’t think it would have been possible. The transit system wasn’t staffed, so someone in a wheelchair who did get stuck would be in trouble. I saw a sign for “wheelchair passenger transfer” so I assume there was a different system.

I was impressed that the announcement for the trains were spoken as well as displayed on a moving sign system.

The elevators were nice and new and had few riders, unlike the evil balance-threatening crowd on the escalators. I noticed the Braille signage. However, I noticed the map in the terminal that I relied heavily on did not have any alternative format for people with visual impairments.

It was survival of the fittest at the baggage claim. I imagine one could ask for assistance with bags if needed. My shuttle was not accessible at all. Again, there is a number a person could call for an accessible shuttle.

It has been my experience that ADA accessibility is one thing, but so much could be solved with better customer service, better assistance, and universal design. It’s not enough to have “separate” assistance and separate shuttles. What is truly universal is the right to catch a shuttle at the airport without having to go to heroic lengths.

Post script: On the way home from Denver, I once again asked for pre-boarding. It was hard to do. I caught myself getting really flustered as I tried to explain. I was with a man who was blind and also pre-boarding. (He was, according to our presenter at ATACP relaying his experience with airport assistance, a “no see male.” Reminds me of Amtrak, where the “handicap” got on the train. Inclusive language. Learn to love it.)

Anyway, when I got to the plane, the captain asked me to wait while they got the man situated. That was fine, but behind me was boarding group A, anxious to get the coveted bulkhead seats. I needed help lifting my bag and all the help had left, assuming I was with the A group. I even looked around for a flight attendant. I had to ask the man beside me as the crowds pressed in on all sides. If it were easy for me to find a seat and lift my bag above my head, I wouldn’t have needed pre-boarding.

Still, I don’t know what my issue is. I’m upset because people are judging me when I pre-board and then I’m upset because I don’t get help.

The issue is that it’s hard to “come out” so to speak. I think of how much better my T.A. years would have been had I gotten my handicapped permit sooner, parked closer, and gotten accommodations like riding the golf cart to class. I realize how much of my energy went toward the wrong things. And I didn’t feel sick. If I had felt worse, I might have demanded my accommodations.

The neatest thing about the conference was all of the people with disabilities there. I saw more guide dogs and wheelchairs than you could imagine. A person who had blindness gave our presentation on tools for people with blindness and visual impairments, while using a screen reader to give his power point presentation. It was awesome to just be surrounded by so many diverse people. But then again, I saw how people with “real” disabilities compared to mine still struggle with how to accept help.

I was sitting in the hotel lobby with other conference-goers and a woman with a cane and guide dog came through. Her dog balked at the sliding door. It was obvious the woman was trying to find something. So the woman I was sitting with asked her if she needed directions. As they talked, my co-conference goer also took the woman gently by the elbow to guide her away from a column.

The lady jumped back and swung her arm away as if she’d been punched.

I understand that after awhile, you would get tired of people holding on to your arm without asking. But it seemed awfully rude. No one in the lobby knew how to act after that. It was an embarrassed silence. We are all professionals in the field of disabilities and no one knew what to say or do. We all gave verbal directions from our couches and that was it.

You live.
You learn.
You pre-board without stammering and turning red. Hopefully. One day.

Friday, November 9, 2007

Sippy Cup Logic

I've been wanting to comment for a while about an ongoing debate the head conductor at work and I had been having when I worked there. I call it the tension between the adaptive and the conductive.

I've spoken of conductive education here. Conductive education is radical independence. So radical that some people have been very outspoken critics of it, saying it imposes upon the child. Conductive education is preparing the child for the world, not the world for the child. It is facing a harsh reality that people with cp do face inadequate medical care to help prevent secondary disabilities, like arthritis, pressure sores, infections. It's a tough world out there, kid. Better learn to walk. Whether you want to or not. And, to quote George Lopez, "Why you crying?"

(It sounds cruel but no more cruel I guess than "It's a tough world kid. Better learn to read and write.")

And it has worked wonders with some kids I know.

It is so much like the philosophy behind applied behavior modification therapy (ABA) in autism. It's a tough world out there, kid. Better learn to speak and not flap your hands when you're excited.

These both come from the medical model of disability. We will fix what makes you not work like the rest of us.

Philosophically, this hurts. This thinking offends me to the core. I worked with I. on and off for two years. He's amazing. He's perfect. There is not a thing "wrong" with him.

But in reality... I will never forget picking up I. one day from conductive education, a year before I worked there. There he was, walking, pushing a ladder. He had help -- a aide sat behind him on a rolling stool and moved his feet. (Little did I know that backbreaking job would one day be mine!)

Beside, a friend's toddler, who I'd also never seen walk. Walking.

The world should be better. People with cp and other related conditions should have better opportunities, better health care, better technology for helping them speak for themselves.

But Jesus Christ, there were two beautiful kids who might never walk independently walking! In front of me!

It's hard to argue with that.

But I am sometimes frustrated with conductive ed's anti-adaptation philosophy. I tried to explain it once and then it became a joke. Whenever I said something that didn't make sense (which happens quite a lot when you are distracted, tired, and stressed), we call it part of my "sippy cup logic."

I am in the business (or hope to be) of assistive technology. What I do assists. In my field, people build wheelchairs to climb steps. In conductive education, we might work a child's whole life to get him or her to climb steps under his or her own power. (In the social model of disability, we want to know why the hell there isn't a ramp there, that having those steps is as wrong as any other segregation or de facto discrimination, but that's beside the point).

I used a sippy cup as an example. I. communicates unhappiness by crying. When I worked for him, he would cry and I would run and get him something to drink. That was usually it. What I really wanted, more than anything, was to find him a sippy cup he could hold and manipulate by himself. When he was thirsty, I hoped, he would be able to get his own water, affect his own world, even without me. That, I thought, would be an amazingly valuable skill. I work in this world and can get my own needs met.

There are no sippy cups in conductive ed. When I. is thirsty, he reaches for the cup, which is out of his grasp. (A lesson learned! He loves to play in all liquids!) I, or another aide, pulls the cup to him, hold his hands over the cup, support his elbows on the table, assist him in tipping it to his mouth. He is learning to drink from a real cup, not a sippy cup, or a specially adapted "assistive technology" sippy cup. There won't be sippy cups everywhere he goes in the world, but there will be cups.

I understand that logic.

Yet for now, there are sippy cups in his world and there might not always be aides to help him with regular cups.

It's the tension between teaching and accommodating.

I worry that while I. spends years learning to drink from a real cup with a person to help him, he will lose the valuable independence that learning to get his own drink from a sippy cup can give him. The conductors worry that years drinking out of a sippy cup will make him have no desire or motivation to drink from a regular cup.

Do you teach a child how to work an electric wheelchair him or herself so that the world can be explored?

Or do you keep pushing the child into conductive ed so that he or she will learn to walk with two or three aides helping?

There is a way to do both. The two can work together. I often felt frustrated and out of place in conductive ed because all the accommodations were human accommodations -- I guess the logic is that humans can be trained to fade the level of assistance, but a sipppy cup, or other assistive technology, can't do so.

But I see AT as a road to freedom. To control the thing you rely on, whether a wheelchair or sippy cup, seems more dignified to me than to always need an aide who is making the decision about how much help you need.

That is the essential question in AT -- how to make someone own their own assistive technology and control it themselves, therefore controlling their own lives.

Control your life through your sippy cup.

I will one day write a book with that title.

Thursday, November 8, 2007

I'm totally geeking out

I'm here in Boulder, Colorado, finishing my ATACP coursework from CSUN. I was altitude sick for the first night or two, but now I'm adjusting.

There is so much here. I have learned so much. I almost don't know where to begin.

Here is what I am finding out with assistive technology -- no one has the time to implement it. Jessie has a springboard with really sophisticated linguistic capacity. Jessie has really sophisticated linguistic capacity, as shown by her combining of signs. I don't know how to use her springboard to help her advance.

M. is terrified of anything that makes her look or feel different, or anything we say she "should" learn. Yet she learned how to bowl on my Nintendo wii in like 2 seconds. She was a pro at her mp3 player, even though it really should have been too small for her to see with her visual impairment. I guess they bought her a BAT, which amounts to a really neat and expensive keyboard. But, um, no one knew how to use it, least of all Melissa.

My friend Z has been a special education teacher for years. She goes on weekend retreats with us. She told how the district had failing evaluations for assistive tech, so the tech person bought them all intellikeys with the software. She does not have time to learn intellikeys and does not want to. Guess what's not getting used?

Technology is a dirty word among most the people I work with. They see it as a waste of money and time and a substitute for human interaction. In the school I work at now, I see three beautiful alphasmarts in the resource teacher's room. She'd like more but they are too much money. Yet, while in the regular school lab, I observed two beautiful laptop carts, each with 30 laptops and a wireless access point built in. Wow. Wow. This is an elementary school folks, a small one at that. A half dozen alphasmarts would cost maybe what two of those laptops would cost.

Still, though, there is something disturbing about watching the special education class in the computer lab. Computers are not a learning tool for most of them -- they are a tool of entertainment, of cutting themselves off from the world, of shutting out. The speech teacher I work for does not believe them to be a useful education tool at all. Speech is communication and human interaction. And I see how for this generation of kids, their computer use is opposite of that.

But I still think it's possible to tap into that. It requires controlling the environment, which one can do easily on a computer. Some of these guys really can't write or type or even really use expressive language all that well, but can play complicated flash games and go ballistic when it's time to turn them off. Using the computer as a communication tool might change their lives if it could be done well. A man I sat with told me how he uses smartboards as an interactive computer interface for his class. Wow. I always thought of smart boards as how business people make presentations. (Maybe I'm bitter because when I was a T.A., we had chalk boards, but the business building next door had smart boards.)

I'm so frustrated. There's so much I want to do.

I was really interested in trying to build a lending library for my area, but I have lost the will. I think I need to work in AT first, to be able to take care of my own needs by having a job that will give me health insurance as I do this. There is a certain point that paddling upstream is too difficult for awhile.

Saturday, November 3, 2007

"We need to find out why it's killing people" -- Rheumatoid Arthritis Death Rate Unchanged

Rheumatoid Arthritis Death Rate Unchanged
By Carolyn Colwell
HealthDay Reporter

from Medicine Net.Com
MONDAY, Oct. 29 (HealthDay News) -- Americans are likely to live longer than they did 40 years ago, but not if they have rheumatoid arthritis, according to a new study from the Mayo Clinic.

"When you look at persons with rheumatoid arthritis, they do not seem to have experienced the benefits over the last several decades of improved survival the rest of us have," said study co-author Dr. Sherine E. Gabriel, a professor of medicine and epidemiology at the Mayo Clinic in Rochester, Minn.

The findings, based on a large population sample of mostly white Minnesotans, showed that women and men diagnosed with rheumatoid arthritis between 1965 and 2000 died at a steady rate of 2.4 percent and 2.5 percent per year, respectively.

During the same period of time, annual death rates declined for men and women without rheumatoid arthritis. The rate fell from 1 percent per year for women in 1965 to 0.20 percent in 2000, and for men it dropped from 1.2 percent to 0.30 percent.

"This suggests that the dramatic changes in therapeutic strategies for rheumatoid arthritis in the last 4 to 5 decades have not had a major impact on excess mortality," the study authors said.

Looking further, they also extended the follow-up to 2007 on the sample of those diagnosed with rheumatoid arthritis between 1965 and 2000, hoping to pick up any downward trend in death rates resulting from the impact of the newest medications, Gabriel explained. Unfortunately, they found no such trend.

Still, a decline could show up if future studies with a longer look back at 2000 and later, when some of the most significant new medications were introduced, Gabriel and others say.

Rheumatoid arthritis is a chronic disease where the body mistakenly attacks its own tissues. It causes inflammation and painful joints, and also may attack other organs such as the heart. About 2.1 million Americans, or 1 percent of the population, have rheumatoid arthritis, according to the Arthritis Foundation.

Cardiovascular deaths accounted for about half of the deaths for rheumatoid arthritis patients in the research sample. The findings did not distinguish between the types of cardiovascular disease that led to mortality. An earlier Mayo study confirmed a strong link between rheumatoid arthritis and congestive heart failure, however.

"It is possible that the cardiovascular interventions that improved life expectancy in the general population may not have had the same beneficial effects in patients with rheumatoid arthritis," Gabriel said.

The research did not study the causes of mortality, added Gabriel. She speculates, however, that since inflammation is thought to be a risk factor for cardiovascular disease, patients with rheumatoid arthritis represent a higher risk group, because their illness involves active, systemic inflammation.

The study was expected be published in the November issue of the Journal of Arthritis & Rheumatism.

The results are a powerful reminder that rheumatoid arthritis is a "very important and deadly disease," said Dr. Hayes Wilson, a medical adviser to the Arthritis Foundation.

"It's not just 'take two aspirin and call me in the morning,' " he said. "Get an early diagnosis and treat it aggressively. The consequence of not treating it aggressively could be excess mortality," Wilson said.

"We need to find out why it's killing people," added Wilson, who is also chief of rheumatology at Piedmont Hospital in Atlanta.

Dr. Stephen Lindsey, chief of rheumatology at Ochsner Health Systems in Baton Rouge, La., noted that while the study does not cover the impact of the latest medications, other new drugs did become available in the '80s and '90s. However, they apparently did not improve mortality, he said.

"Even when we make [patients] hurt less, they still may be susceptible to other chronic diseases such as heart disease," he added.

Because of the relationship between inflammation and rheumatoid arthritis and inflammation and cardiovascular risk, that may mean that "no matter what we do, we can't lower their mortality rate," Lindsey said. However, until that's established, "We need to pay more attention to cardiovascular status early in the illness," he said. "We need to be on top of everything and not just on top of their pain and disability."