Summer's almost over, and I haven't done everything I wanted to do, but I did manage to go camping. Aside from being a lot of fun, that was an endeavor that I can count as a major accomplishment, given the amount of planning and coordination involved.

I know a lot of outdoorsy people who would scoff at that claim. They wake up some mornings and think, "I'm going camping," and they throw a toothbrush, a change of underwear, a canteen and some dried food into a backpack, and off they go.

But when you have a disability like mine, pretty much nothing works that way. For any kind of traveling, especially for camping, you have to plan a lot. One of the great things about camping is that it means many different things to different people. For some, it means lying in a sleeping bag on hard ground, looking up at the stars. Others erect state-of-the-art tents to protect them from rain and bears. To some hardy specimens, to camp is to sleep hanging from a rock, wrapped in ropes and carabiners. Some people check into a four-star lodge with linen service and a view of mountains and waterfalls, and call that camping.

I have my own idea of camping. It involves just the right balance of comfort and discomfort, which I think is what most people like about camping. You feel like less of a civilized sissy, because you're colder and/or itchier and/or more sore than usual. You don't have your TV, and there are rustling noises out there that could be big hungry animals. You're pretty tough!

Even if you have a significant disability, camping lets you fancy yourself a robust and resourceful child of nature. But as I said, you have to plan.

You have to organize supplies and equipment. You have to research accessibility. You have to enlist other people into your project. And that means you have to plan for their needs too. You need enough food, flashlights, toilet paper, and beer for everybody.

Add two other family members with disabilities, and the need for planning multiplies.

Fortunately for me, one family member -- my partner Robin -- is extremely anal about planning. She made our site reservation way back in March, and within a day or two after that the site was booked for the whole summer. Thanks to her foresight, we were among the privileged few to stay in one of the Colorado State Parks system's wheelchair-accessible yurts.

Yurts? I can hear some of you asking? What the heck is a yurt?

A yurt is a good-sized tent, round and domed, constructed of wood lattice walls and a sturdy fabric covering. It was originally developed by the nomadic peoples of Central Asia, including Turkey and Mongolia.



In July, we camped in a yurt at Pearl Lake State Park, a real jewel of a park tucked into a lush valley in northwestern Colorado. With two sets of bunk beds and some floor space, the yurt had room for me and Robin and our daughter, and the three attendants who signed on for this working vacation. It was cozy, especially with two power wheelchairs, my oxygen concentrator and ventilator, commode chair, cooler, jugs of water, fishing tackle, and various other adaptive and recreational devices. But it worked.

The yurt didn't have a roll-in shower, an adjustable bed, an automatic door opener, or most of the other access features I have in my own home. Thus I could claim to be roughing it. The yurt did have the access features I really needed -- a ramp to enter; electricity to power said ventilator and oxygen, as well as our wheelchair battery chargers; and a lower bunk wider than the upper bunk so my attendants could transfer and dress me without constantly bumping their heads.

In addition to that seductive sense of valiantly going without (some of) my usual high-tech luxuries, our camping trip gave other gifts too:

Wildflowers, including columbines, cosmos, lupine, meadow rue, and yarrow, splashed their colors all around us. Lodgepole pines and firs loomed above us, and Aspen leaves fluttered like thousands of waving hands.

Our daughter, coached by my dad and by one of our attendants, got pretty good at casting a fishing line. She didn't catch anything, but she displayed amazing patience and concentration in the effort.

It's a proven scientific fact that all kinds of foods – potatoes, burritos, even marshmallows – taste better when cooked on a campfire.

Bright blue dragonflies danced by us on a regular basis, like itinerant magicians.

Late at night, we looked into a star-filled night sky whose depth we can't begin to perceive from an electrified city.

Best of all, we survived the wilds, and lived to tell about it.

Copyright 2010 by Laura Hershey

In a blog called "Life Support" I don't want to spend too much time writing about death, but lately the disability community has lost some good and important people. I don't want them to die the second death of being forgotten.

Last month I paid tribute to Callahan the cartoonist. Since then we also lost an outstanding disability history scholar and advocate, Professor Paul Longmore. You can read or hear NPR's brief but good obituary here. You can watch this compelling video of Paul's July 26 speech about the disability rights movement.

Longmore was no ivory-tower academic. During the last weeks of his life he enlisted in the resistance to what he called Gov. Schwarzenegger's "unconscionable war against people with disabilities," that is, the budget cuts in home-based support services. He was proud to be part of the disability rights movement, and he contributed an enormous amount of energy and knowledge to help fuel it.

Paul has gotten lots of posthumous props, all well deserved. I'm going to focus the rest of this post on someone who's received far less attention -- maybe because she didn't travel and lecture as much; or because she lived in a small town in central New York, which doesn't possess the cool crip cachet that the Bay Area has. Or because she was a woman, and sexism is alive and well both in the US news media and -- yes, I'm going to say it -- in the disability movement.

I'm talking about Barbara Knowlen, who passed away on July 24 at the age of 69. I first learned the news about six weeks later, in an e-mail from someone I don't know. The writer, a disabled woman, was asking for help with a Social Security work incentive program called "PASS," which is designed to let disabled people try employment while keeping essential benefits. Barb had been helping her until her death, and now she was at a loss. "She was the only sharp, knowledgeable, and gutsy person I knew I could rely on to do battle with SS," she said of Barb.

That's the kind of thing a lot of people said of Barb. When it seemed that no one else could cut through the thicket of contradictory regulations, misinterpreted guidelines, suspicious administrators, and bureaucratic bullying, Barb could do it. She knew the rules inside and out, and she could argue forcefully.

Barb was a T1 paraplegic who also had multiple sclerosis. In the 1980s, she worked in the independent living movement in Missouri and Oklahoma. Then she decided she wanted to start a business designing and selling advocacy posters and other products and service. She encountered opposition when she asked help from Kansas Vocational Rehabilitation. They tried to use the rules to limit her choices; she taught herself the rules and beat them at their own game. Based on that experience, Barb wrote a consumer manual aptly titled "How to Kick Ass and Win."

From that time on her company, Barrier Breakers, continued to sell posters, but also provided information and, increasingly, direct advocacy, to support people in achieving their work goals using Vocational Rehabilitation and Social Security benefits. To get an idea of her services, attitude, and approach, check out the archive of her Barrier Breakers website.

Barb also stayed involved in other disability advocacy issues like ADAPT, independent living, and medical discrimination. In a notable exception to the lack of online tributes to Barb, Stephen Drake devoted a recent edition of his "Not Dead Yet News & Commentary" blog to talking about some of these other aspects of her work.

Since 1994 and Barb had been helping people write "PASSes" -- Plans to Achieve Self-Support -- which allow SSI recipients to earmark any extra income (earnings, SSDI, family contributions, etc.) for expenses they need in order to work or get ready to work. Those "set aside" funds then don't count against their SSI eligibility. That means a person can work toward a dream job (as long as it's "feasible") by paying for training, an adapted computer, a lift-equipped van, or whatever, all while continuing to get a monthly SSI payment and, more importantly for most people, Medicaid coverage.

All of this has to be approved by a series of bureaucrats, of course, and some of them just love to say no. That's why Barb didn't just write a PASS, she stuck around and fought for it. She did this for people all over the country. I always admired not only her effective advocacy for her clients, but how personally she seemed to take it when SSA messed with them. She would describe a client's circumstances, highlighting how hard they were working and how much they deserved the opportunities they were seeking. She was indignant that anyone else could fail to see the plan's or the person's merits, which were so clear to her.

Just two years ago, she helped a friend of mine here in Colorado deal with a hostile response to a perfectly reasonable proposal. Before Barb got involved, my friend was at risk of losing her job offer, her savings, and her hopes for success. When we finally called Barb, she transformed the situation. She pushed past the problem bureaucrat, got to the right people at SSA, and made a strong case for my friend's plan based on the rules and intent of the PASS program. She kicked ass, and my friend won.

Copyright 2010 Laura Hershey