Monday, July 4, 2022

Strong Women, Strong Message

        Disability's a hard journey, but oh the people I meet who I never would have before.

        Hosting this month's new episode of the True Tales by Disability Advocates podcast, I got to talk to Laura Odom and Sheena Walter about their "Awakenings" as women with disabilities leading fulfilling lives. How did they get there? When they dared themselves not to hide behind their disabilities - Laura with narcolepsy and Sheena with a PEG tube due to gastroparesis. They both decided No more and put self-doubt aside, and were rewarded with richer lives than ever before. I hope their insights speak to you like they did to me. I wish my younger self could have heard this short program: He needed it.

        This is the first season of the podcast and we were still learning the process with every session, so of course we were a little nervous, checking all of our details to make sure it's all right. Did everybody turn off their phones? Oh no! did we remember to start the recording? (Of course we did.) Laura is easy-going and so open, just the calm presence you'd want in that jittery [virtual] booth and a delight to work with. Sheena meanwhile is buoyed by a quiet but resolute faith that gives her words a gravity or stopping-power with me. There was one point where I was fumbling around, apologizing about something (I was a hot mess) while we prepared to go live, and Sheena said, "You're too hard on yourself," and something like, 'We're all God's children, we all deserve grace.' Thank you, Sheena. I was truly grateful to hear her, grateful for them both.

        Give it a listen, it's only 19 minutes. If you like, please leave a review, or let me know what you think. I know, a hot mess.

Monday, June 20, 2022

Stax to the Max: another must-see in Memphis

Stax Museum of American Soul Music

926 E. McLemore Ave., Memphis, TN, 901-261-6338. Tues-Sun 10-5.

You're walking in Memphis. You're a music fan, so we know where you're heading. The gravitational pull is too strong, and soon you're looking out over that low stone fence at Graceland. That entire wall was lined with people when he died that summer of 1977, right when Punk was really ramping up. Coincidence? I dunno. But it costs $77 to cross that fence, which sometimes is no big deal and other times, man, it's 77 bucks. Especially when we all know he's not really buried there but is running around in South Africa somewhere with Jim Morrison. But if you're light on cash and you still want to commune with the spirit of Elvis, you could go to Sun Studios or Beale Street where the cat hung out -- and you definitely don't want to miss the Stax Museum. 

The Stax Museum is a blast. If you're into blues, R&B, soul, early rock, any rock, this place will surprise and excite you. We knew that it would, but it was even better than expected. I urge you to see it and the Delta Blues Museum in Clarksdale, Mississippi both (not on the same day: they're 75 miles apart) because they go together like two arms of a shirt, but we'll get back to that later. 

Stax was one of the classic, groundbreaking record labels of the first few decades of rock, roll and soul. The museum stands on the site of the old studio and pays tribute to what and who made that place legendary. What kind of music? A hit factory of records from the likes of Sam and Dave, Albert King, Otis Redding, Isaac Hayes, the Staple Singers, Ike and Tina Turner, Booker T. & the MGs (an interracial instrumental quartet that also served as the company’s rhythm section and house band): sweaty, shakin', good-time music. Open a new tab and play this while you read on.

Your tour starts with a fantastic little documentary on what Stax was all about: a harder-edged R&B that came before Motown, a place that integrated musicians and audiences both, and the magic combo of the blues, gospel and country that swirled around together in this rivertown that inspired singers like young Elvis Presley and the other legends that recorded at Sun Studios. The film is a powerful 10-15 minutes that put us already in a great mood and psyched to see what's next. And it opens directly into a small recreation of an old bleachboard southern church. The effect is powerful: it drives home the message of the film. This place is so well-designed! Now we're ready for anything Stax wants to lay on us.

What follows is a good-sized museum with plenty of rhythm and also enough learning to throw you into Info Overload. We are the geeks who stop to read every panel we come to, but after 2-3 hours our brains shut down. At Stax, you reach IO but with all kinds of lively features and variety thrown in. It's an Easter basket of GitDown! What'll you find in the basket? A working studio room in place of the old one that burned down, producing cool acts like Nathaniel Rateliff and the Night Sweats. Isaac Hayes' Oscar and mondo gold-trimmed Cadillac that's even badder than his chandelier Caddy in Escape from New York. (Shut yo mouth!) The Soul Train room, a re-creation of that famous dance floor. Seriously, this joint rocks! This is the only museum we've ever been where I'm watching Mab dancing while she's reading factual info. Because the soundtrack's powerful! She got that swivel in her hips, yes. Maybe they ought to pipe in some infectious Stax rhythms while the little ones are learning times tables and such. 3×3 equals shake your tail feather!

24 carat, fyi

As far as accessibility, it's all one level with plenty of space, so no problem. The displays and placards are as clear to someone in a chair as to someone standing except in one regard. On a few display cases, like Tina and Ike Turner's, the overhead light glare from behind made things difficult to see from chair height despite my moving around. A detail I'm only remembering now because Stax was such a full visit.

Like a great museum will, Stax alters your understanding and perception. Combined with our experience seeing the Delta Blues Museum in Clarksdale, we come away with a better appreciation of Memphis as a melting pot of musics. On a larger scale, the Mississippi River was a superhighway for commerce and also the Great Migration of African-Americans from the South to the cities of the North, including the music and culture they brought along with them that started important scenes in Memphis, St. Louis, Detroit and Chicago, among others. In fact, Art Bell, marketing director for Stax, is quoted on a placard as regarding Chicago as his market target for breakout or crossover hits. In segregated times, Stax had a harder time getting traction in Eastern markets (New York) and Western (Los Angeles). But if a record broke big in Chicago, then those other large markets grew more receptive. And Chicago was indeed receptive to Stax, because Chicago was part of the same ecosystem of music that traveled along the Mississippi, which came from Delta.

In this way, Bell said, Chicago was a suburb of Mississippi.

        Like the send-off of Soul Train used to go, Love, Peace, and Sooouuuul!

        [Where were we staying? Tom Sawyer RV Park, West Memphis, Arkansas. Wait'll you see this place...]

Monday, April 25, 2022

Baaling out at Brazos Bend

        In February, we camped at Brazos Bend State Park 21901 Farm to Market Road 762, Needville, TX, 43 miles south of Houston on the Brazos River. Parks like this, so close to a major city, are secret gardens that cast a spell the moment you enter. When I was a kid looking up nasty demons I came across in the Bible - Beelzebub, Ashtarof, Legion, and hoping for a creepy sketching to go with the definition - I found out that the one named Baal wasn't necessarily a devil or evil at all: a baal was a spirit that belonged to a place, like a babbling brook could have a baal living there, or a shadowy ravine might, or maybe there’s a baal in a tree hollow. And when we visit Brazos Bend, or Cedar Hill State Park outside of Dallas, the congestion, noise and fumes of the world fall away as we enter the park and are surrounded by the peaceful magic of fragrant old trees and the hush of green forest. Instantly we’re part of a different world. The baal’s all around us, and the busy little swipe-swipes of our devices have no power here. OK, that’s an exaggeration. There is wi-fi, but it feels a lot less important here. The point of these places is to wrest my head out of its tangled nest of to-do's, reaching-outs and write-me-backs: I'm here to baal out.

        The baal of Brazos Bend lives in humid woods and finger lakes with marshland. The park has a lot of hiking, many trails wheelchair-accessible. The main attraction though is the wildlife, including deer and plenty of waterfowl. (Bobcats too, but they don't want to be seen.) But the stars who really bring people in are the 300 alligators living in the park. There are plenty of pictures of them sunning along the trails – on the trails! – while Houstonians visit on lunch break. So it's not a very secret garden at all. Except the winter weather chased everyone away. Enter two opportunistic Northerners. We bundled up against the gray and wind and went out to find the baal and its alligators.

        (I ran off at the mouth here, so campsite decription & features to come.)

        We got down three trails, all very accessible. The one we made a beeline for was 40 Acre Lake Trail. Why? That’s where the alligators are, of course! The trail was gravel and old asphalt (sometimes bumpy but generally good) and circles a lake with some marsh and waterfowl. We saw a couple of hurons, ibises, and scores of some kind of swallows skimming and circling the water for bugs. The cold winds whipped across the lake. What, are we in Chicago over here? There were no alligators at all. Mab the Stair Freak even checked from the top of a three-story observation tower, brrrrr. Nope, no sign of alligulators.

        Clearfield Lake Trail is the paved ADA trail that crosses a lake with plenty of large waterfowl that let us come up close. Those trails were for us, and for the birds.

        A short stretch of Clearfield Lake Trail is wooded before it crosses the water. Look at all of the bird****, Mab said, and she's not a big swearer but that's how much there was. It coated the floor of the woods like whitewash. I don't remember the trail itself being too gross. But I did look up.

        "Look," I said. "In the tree." Hunched on a branch 30 feet above was the dark outline of a vulture looking down at us. He was a bad boy, all right. Correction, bad boys. "Look at all of 'em!" It was an arching branch and on it perched a line of silent, menacing vultures framed against the gray sky. They were all checking us out.

They're up there... licking their chops.

        But not only them: they were also in the next tree, and the one after that. And the one below that, and the ones on the other side of the trail. Everywhere we turned were staring vultures. On, on we went, but as we fled one treeful of vultures, another was there stalking us. Impassive, eerie. Once in a while a wind would ruffle a feather, but no reaction. How ominous, how unnerving. Were they looking at me like a Thanksgiving turkey on wheels? I could hear Vincent Price snickering, laughing in the background, and the suspenceful music building, getting louder (in my head). It was impossible to know what these hideous creatures were thinking, but they were not happy. Their car's extended warranty had run out. Something.

        There were hundreds of them around that lake. It was a convention of vultures - really, I looked it up, and a group of vultures is called a convention of vultures. Not a fun convention either, but I loved it. 

        Actually I saw a lot of these kids flying around when we entered the park and were looking for our campground. Bunches of them swirling around, more than I'd ever seen. It was a kettle of vultures swirling round, because flying vultures are a kettle (I'm into this!), and hunkered-down, sitting vultures are a convention. Got it?

        Maybe they'd been sizing me up the whole time. Then, there'd be a wake of vultures (I'm not kidding you. Look it up.), which is what they're called when gathered around, feeding. How about a banquet? Or a buffet?

        We visited the nature center nearby, with natural history and some rescued baby gators in the tanks, soon to be reintroduced to the wild. A ranger told us they didn't know why there are more vultures in the park this year, but she thinks there's more on the way. I knew: the baal. There was no other explanation for some many those large birds just loitering. What was there that is so good? What are they eating? We saw some picking at the ground for bugs or worms or whatnot, but those would seem to be appetizers to birds of this size. They are large. We came upon a dozen of them sitting on the wooden rails of a short pier/overlook, and I crept up on them slowly so that as they flew away one by one, Mab filmed from right behind me. When they launched, their strong wings beat the air like beating a rug: thump, thump, thump. The ranger also said that the alligators were submerged in the warmer water and one. Fine, we didn't need them.

 Analemmatic sundial outside nature center looks like sundial + the game Twister

Also the George Observatory on-site, open weekends

        We had time for one more spin, and that was the Whiteoak Trail. It was late afternoon, getting colder and darker. Some staff had to be heading home by then. We wanted to trail along the Brazos River for a while. Whiteoak is a bike trail, and again we had it to ourselves. It was gravel and earth and crossed through a half mile of silent, baaly forest (thick clusters of yaupon hollies, and here and there a gigantic, gnarled oak standing like a monument). Outside, gray winds. Inside, green and quiet. The trail brought us to the banks of the Brazos, wide and red with clay.

Wild yaupon

        I cranked up the speed setting on my wheelchair to make as much ground as possible before turning back. But in only a few seconds it was obvious I was moving no faster. I asked Mab shield my control display with her hand. My power was down to one bar out of 10! (Glare had obscured the display all day, zoinks.) We turned back immediately, but it was getting darker and darker and the chair getting slower and slower. In our minds we were both rehearsing what to do when I was stranded out there. 

Things are about to get real.

        But, lawdamercy, we limped back and our van Moby Dick came into view. The chair barely climbed up onto the pavement, and it died right in front of lift - Mab had to push me onto it. If we had hiked even 10 feet further, things would have been a mess. But it was completely exhilarating, dodging that bullet. We laughed like maniacs as we warmed up in the van.

        Mr. Baal, you got a good park.

Saturday, April 23, 2022

Helping Others, Helping Themselves: Saluting MS Volunteers, Three Stories

        When we're diagnosed with multiple sclerosis, does a sign appear on our foreheads, saying, 'Now Soliciting Medical Advice'?

        "When people would see me on the scooter," said Colleen Voith, who has remitting-relapsing MS in Chicago, "they would say things like, 'I know a lot of people who have MS and walk just fine,' or 'Are you getting enough exercise and taking the right medications?' I would get so angry.

        "I think people need to be more educated about MS and how no two people are alike."

        Since she was diagnosed 27 years ago, Colleen and her husband Dan raised a family of four and now have two grandchildren. She's also gone from cane to walker to scooter, and had to give up driving and working. But she got a phone call with an unusual request, one that led her down a new road in life through volunteering, joining thousands of others with MS who give their time and efforts to help others. With so many of their own challenges, why do they do so? This National Volunteer Week is a good time to hear a few of their stories and the values that drive them. Opportunities for volunteering can be big or small.

        The call to Colleen was from her niece, studying physical therapy at Northwestern University. She asked a question you don't hear every day: would you be interested in coming to my class and answering questions about MS from my teacher and fellow students?

        Hm, what do you say to that: complete strangers staring at you and asking you questions about... who knows what they'll ask? But sometimes a mischievous dimple winks from Colleen's cheek. Sure, she said, I'll do it.

         "I loved doing student labs," she says. "The students are brilliant and said hands-on with a neuro patient helped them better understand how physical therapy helps with MS." 

        They all liked the experience so much that she appeared the next three years as well, the last time remotely (with Dan's tech help). It was fulfilling, and surprising how fun – but kind of not. Because Colleen was also volunteering in another role. 

        The local hospital was knocking down its aquatics center, relied on by Colleen and many others for MS Aquatics and water fitness. "This became my exercise and support group," she says. She helped organized a protest campaign (Saved OPHFC on Facebook), and they won and saved 100 jobs! The renamed Orland Park Health and Fitness Center remains open, and pending Covid, will offer MS Aquatics and MS Yoga.

Don't rile up the red scooter mom: Colleen Voith in action

        "It was so fun. I love to volunteer. It makes me feel good to help others, especially those newly diagnosed," she says. "The best therapy for me was fundraising and volunteering for various events."

        Another event Colleen took part in was Skydiving for MS in Rochelle, Illinois, when she jumped out of an airplane (twice, because Colleen) along with Dan and some 20 other family and friends over the years, codename: "Colleen's Commandos." But just as important, she started lending a hand to the volunteers organizing the event, Cecile and Dave Perez, who had grown it from a one-person fundraiser to a yearly occasion that drew people from across the country. During the year, Colleen helped Cecile raise donations and raffle-items from local businesses.

        "It was the best time ever! I really can't see going back," Colleen says, but the dimple gives her away, "but you never know."

        Cecile has RRMS and jumped twice. She was also the co-chair and chief enabler, the Mama Bear of the event, working year-round to stage the epic fundraising raffles (and catered meals) in the evenings. MS fatigues you, but on event day she worked through afternoon heat and anything else that might pop up to make the event happen and the skydivers (with and without) MS jumping. With characteristic humility she calls the event "a collaborative effort."

        "I had so much fun and help from my family and Colleen with prizes," she says. "The volunteers that day were the backbone of the event and made the event special." Skydiving for MS raised over $250,000 for the National Multiple Sclerosis Society.

        Cecile also volunteers in the MS Society's Peer Visitor Program, keeping contact with people with MS living in nursing homes. Once a month she visits participants who may be dealing with isolation and loneliness. Simply listening and supporting each other over time builds friendships, each looking forward to seeing the other. 

        "We are in this together," Cecile says, "and helping someone with MS, we are helping ourselves."

        Since the pandemic closed many of the facilities to visitors, the volunteers have taken to sending encouraging cards. "To let individuals know they are not alone, that we miss them," she says, "and to put a smile on their face. Better times are coming." It is a workaround that allows volunteering from home.

Awards night: Dave and Cecile Perez, Dan and Colleen Voith

        In 2016, Colleen, Cecile and Dave Perez won the NMSS Greater Illinois Chapter's Volunteer of the Year Award.

        On a different coast and a different part of the MS journey is Pam Swint, a married mother of two in Redwood City, California, who in February 2020, had two shoes drop at once: imagine learning you have primary-progressive MS at the same time that the world is shutting down for the worst pandemic in a century. Thankfully, her sense-of-humor-as-coping-skill remained open for business. 

        "Everyone masking up right as I became immune-compromised with Ocrevus?" she says. "Awesome."

Taking a stand: Pam Swint

        During lockdown, she took advantage of MS Friends, and was able to sort through some of her own issues by talking to volunteers with MS. She liked the experience so well, she wanted to try volunteering herself. Doing so from home made it more accessible.

        "I'm the Mayor of Muscle Fatigue," she says. "I visualize that I have a little vial of energy for the day. I use it up pretty quickly, and it takes a long time to recharge." 

        Now she's a moderator for an MS Society Facebook forum, and so far the shoe fits fine. 

        "Volunteering has been huge for my mental well-being. Being part of a team, interacting with a consistent group, and problem-solving are all wonderful ways to not only distract myself from this disease, but also learn more about available resources." Pam considers the other volunteers her support group. "They tend to [be] proactive and supportive people.

        It's helped give her the energy and desire to do in-person volunteering with Bike MS and Sail MS, putting together a crew of MSers to sail the San Francisco Bay and down to Mexico.

        Thanks to all MS volunteers, with the disease and without, whose efforts of all sizes are step-by-step making this a better world. 

        To volunteer:

        Find your local Walk MS, link shortcut:

        For the #SavePHFC campaign, go to Saved OPHFC on Facebook and scroll down a couple years. Fun David vs. Goliath stuff.


Sunday, April 10, 2022

The Mama Bear of Skydiving for MS

        In my article I couldn't possibly cram in all of the wonderful people who deserved a place. At the top of a long list is the dear friend who ran the whole shebang and worked, worked, worked, for rest of us to have the fun: Co-organizer Cecile Perez.

These people have just been buzzed by an airplane.

        Ceil has RRMS and jumped twice. She raised funds and prizes year-round for the epic -- and I mean epic -- raffles held in the evenings (after we gorged on delicious catered food). On event day she worked all day, through afternoon heat and anything else that might happen: never downtime, always setting things up for others. MS fatigues you! but she kept going with superhuman drive (Lord knows I can't keep up with her), powered by that huge, giving heart of hers. Even her memories go to propping up others:

        "I remember the raffle prizes and the volunteers during event were a collaborative effort and I had so much fun and help from my family and Colleen Voith with prizes. The volunteers that day were the backbone of the event and made the event special.

        "What really made the event special was individuals with MS jumping. AMAZING!"

        Thanks, Ceil, for the lifetime of memories and raising over $250,000 for the MS Society! Here's my New Mobility article about Ceil, Nathan, Dave and the others who made 19 years of big days happen:

        I love Ceil and if you know her or know anyone with MS, I hope you'll leave her a greeting below. She deserves it.

Saturday, April 2, 2022

Last Dance

        Batman and Robin, peanut butter and jelly, Cheech and Chong - move on over and make room for Nathan and me! We're doing one last epic jump together in the current edition of New Mobility. I pay tribute to my late friend and skydiving ace Nathan Dexter who took me up several times for Skydiving for MS at Chicagoland Skydiving Center in Rochelle, IL. Sadly, he passed away in 2019. Nathan worked hard getting me up in the air and down again safely every year, and I bring you along for the ride. While researching the article, I discovered a whole industry - skydivers, dropzone operators, gear designers & manufacturers and more - opening up the skies to people with disabilities.

        Thanks to editor Ian Ruder who gives me wide latitude (and check out the sweet page layout). Even bigger thanks to Dave Perez and Ceil Perez, the organizers who were the beating heart of Skydiving for MS for so many years. Doug, Becky, TD, Carolyn at CSC. Jackson, Shanon at USPA, Louie and Rosi at UPT. So many others, I wish there was room. It was great to relive those incredible days.

        While you're there, check out Tim Gilmer's astonishing profile of rural wheelchair users: 


Wednesday, February 9, 2022

Frida Kahlo, Disability Artist

        Here's one from my queue that somehow never got posted. It's always a good day for an art post, and color during the endless sludge of winter, and Frida Kahlo...

        "I paint self-portraits because I am alone so often... I am the person I know the best."

At the Frida Kahlo: Timeless exhibit that closed last week at College of DuPage's McAninch Arts Center in Glen Ellyn, Illinois, what gripped me as much as her artwork, 26 paintings, was how profoundly her life and art were shaped by disability. I knew from the biopic with Selma Hayek that she led a life of physical pain, but had l no idea she was bedbound so often and so long that she created a lot of her great art there. The exhibit even placed a replica of her bed right in the exhibit!

At age 6, Kahlo contracted polio that left one leg shorter than the other. At 18 she survived the crash of a bus with a streetcar that killed several passengers. Kahlo was pierced by a metal handrail that fractured her pelvis and punctured her abdomen and uterus. Her spine was broken in three places, her right leg in 11, her collarbone was broken and her shoulder dislocated. That fateful moment dealt her a lifetime of agony, isolation and miscarriages, but also tempered her artistic vision and the resolve to realize it no matter what.

At times she saw herself and others in an almost disembodied way. She created surrealist paintings that looked like medical charts of her miscarriages, vehicular accidents, and the metal rods that propped up her back and caused chronic pain. She turned that same almost clinical eye on her portrait subjects and on the way women are treated. One of the paintings shows the brutality a woman from the headlines had suffered at the hands of a murdering man, and Kahlo pulled no punches on the details, making sure viewers got an eyeful of how many women are treated. But on the other hand, her eye could capture the lace as fine as dewdrops on the sleeve of an otherwise poor and plain-looking young girl whom she painted, signaling the beauty she saw inside of her young friend.

The exhibit highlighted the disability theme throughout the exhibit, and amplified the message by mounting a side gallery of works by Tres Fridas, a collective of artists Reveca Torres, Mariam Paré and Tara Ahern. Tres Fridas (the name is a nod to Kahlo's painting, Dos Fridas) stage disability-related recreations of famous paintings. The nameplates of their works show the original artworks to compare with, as well as explain issues that people with disabilities are dealing with today. Kudos to the McAninch Center for taking this opportunity to underline important issues that the general public gets little exposure to.

Kahlo embraced her own disability as an intrinsic part of her whole self. She wore support braces around her torso, three of which were re-created for the exhibit. One was of burnished leather that resembled a hunting vest or leather armor. Another was moulded plaster, decorated with exotic painted flowers and designs. Another way that disability was manifest in her art was in her subjects, especially herself. As a young woman (she died at 47), her energies and mind engaged with the wider world, yet for much of life her body would not let her. She and her famous and influential husband, the painter and muralist Diego Rivera, reveled in the company of artists and thinkers in Mexico and worldwide. One item in the exhibit is a short film showing her and Riviera with the historic revolutionary Leon Trotsky after he came to Mexico in exile from Russia. (Soviet Premier Joseph Stalin would send an assassin to kill him shortly afterward.) All this, and still Kahlo led much of her life in her bedroom, alone.

And yet, even forced to lie on her back, she created art. To create requires willpower even for someone able-bodied. That she continued to do so through pain and depression is a testament to her power as a person and artist. As I deal with similar issues, she amazes me.

Of course Frida Kahlo is not only a disability artist. She was also painter, provocateur, fashionista and proud mexicana (in the Mexican Revolution of 1910, Mexico threw off the yoke of dictatorship, and society of Kahlo's day embraced and celebrated its native culture and history): all of these things made up Frida Kahlo as a person and as a life, and she incorporated it all into her art and expression. Even her disability and isolation were not overlooked or kept hidden: they were turned into a source of power that made her work unique, that is, uniquely Frida Kahlo. (Until recently, disability and depression were forbidden subjects. Now think about the taboos back in Kahlo's time!) Things like these seem like common sense, and yet we (me) sometimes have to learn basic truths like this, and it can take a great artist and museum to help us understand.

Viva Frida Kahlo!