Disinvited to the party: A new administration means new challenges to people with disabilities

Seeing the president quickly claiming that disabled workers and diversity, equity and inclusion programs played a part in the fatal Jan. 29 Washington D.C. air collision, when investigations were barely underway and no one knew anything for sure, was certainly a batten-down-the-hatches moment. Especially when it was soon apparent that there is a long record of close calls between military and civilian air traffic in that area, and even now the NTSB is looking at several possible causes including equipment malfunction that may have led the military aircraft to fly too high in the air space. Yet the knee-jerk response was to go after people with disabilities. Then, it’s not surprising from someone who publicly mocks the disabled for a laugh line.

Obviously DEI is this season’s political bogeyman. However, there are practical reasons why DEI programs came about. Yesterday I learned about a paraplegic who works for the government developing emergency response protocols to cover people with disabilities, because who is going to know how to handle the needs of people with disabilities better than other people with disabilities? And since professionals in the field want to better their knowledge, they actually want to learn how to best help people with disabilities from people with disabilities. Does that follow? It’s hardly a nefarious scheme. Many times I have been asked, as someone who is disabled, for ideas on how to set things up in ways that are better for people with disabilities, from architectural details to technology questions and even the shapes of tables. This week I was hired for a job because they need someone who has experience with disability because some of their clientele have disabilities. I hadn’t thought of it until now, but I guess that makes me a “DEI hire.” Egad. I feel so dirty.

What’s interesting is seeing how quickly the broad-based corporate support for DEI fell like a tree, affecting not only the disabled and minorities but women too. But I understand that corporate America doesn’t want a fight with authorities — it wants stability and predictability, and so its support was always as thin as a dollar bill. Take note of that time you see a commercial tugging at your heartstrings about how much the advertiser cares about you. But it’s also wrong for me to paint with too broad a brush, when plenty of big names are standing behind their principles, like Apple, JPMorganChase, Delta Airlines, John Deere, Costco, Ben & Jerry’s and e.l.f. Cosmetics.

Add in that Medicaid — a major insurer of the disabled and the guarantor of services that keep people living in their own homes instead of (and for cheaper than) nursing homes — is a likely target for cuts after the U.S. House of Representatives passed a budget resolution this week calling for a massive $2 trillion in cuts.

Also, Section 504 of the Rehabilitation Act of 1977, a major piece of accessibility law that led to the Americans with Disability Act, is being challenged by the attorneys general of 17 states. Some of those bringing the suit claim that the challenge is limited to recently amended parts of the law that cover transgender people, but the language of the suit specifically targets the entire accessibility law.

Taken together, the disability community is definitely on edge. Rather than sit and squirm over the news though, long-time disability advocacy leader Bob Kafka’s advice is “don’t mourn — organize.” For instance, the House would have to go through many steps before any proposed Medicaid cuts would become a reality, so it’s a good time begin calling your rep (Capitol Switchboard 202-224-3121) and let them know what you think about how they voted this week and how Medicaid cuts would affect you or those you know. You can likewise chime in on the Section 504 case and tell your attorney general how important accessibility is to you, the voter. These policies and provisions were hard won, and once they’re diminished or gone, they’ll be extremely hard to claw back.

It ain’t pretty but it sure is beautiful: ADA accommodations like a concrete pad can be pretty cheap

We have needed new gravel on our driveway for a couple of years now. Dry sandy soil, thick tree roots exposed by erosion, and bumps left from heavy work equipment: All have made getting around our place more and more difficult. Actually for the past few months it’s caused me to go out less and stick to the porch instead. With every year and every gully washer of a storm, the problem has grown worse. We’ve invited contractors who seem interested in the job, but then don’t hear from them again. I’m guessing that our job is too small to warrant their time, but who knows?

Then last week, I got stuck at the base of the ramp in front of the house. I was chasing a rare patch of winter sunshine, being careful not to stray too far, but on that day, even 3 feet out was too far. When I turned to go back up the ramp, my wheelchair tire started spinning in the dirt. I called Mab over to help eye up the situation, and together we buried that tire down even deeper.

They say good guys wear white hats. Well, the good guy in my story drives a white pickup. And the first thing I saw when I lifted my eyes from the buried tire was that white pickup passing by on the street. It was my buddy Gary coming home from work.

“Siri, call Gary.”

A few short minutes later, the cavalry had arrived: The white pickup pulled up right there in front of us and out piled Gary. He’s a big guy, and even though his hip was ailing, he wasn’t content to just help with pushing. Instead, he lifted the rear of the wheelchair right out of the dirt. I skedaddled a retreat up the ramp before I could land in any more trouble, but Gary didn’t leave right away — here-around you’ve got to “visit” first. All the while, he scratched his head, looking at the derned problem-spot at the foot of the ramp.

It was a couple days later, a Saturday, when he showed up again. In the bed of his vehicle he’d loaded five bags of gravel and two more of concrete mix. He raked the rock into a hook shape, curving away from the ramp. Then he spread the powdered concrete over the gravel. Mab brought the water hose and the two of them worked the concrete into the rock. I was in bed, healing from a saddle sore, during all this. But by the time I laid eyes on it a couple days later, here’s what I saw:

Not good pics, but I've gotta get this posted already.

Behold $83 of materials, 700 pounds of material, less than two hours’ work, and a whole heck of a lot of friendship. The “pad” is about 3.5 feet wide and extends out some 9 feet before curving back around like the tail of comma, giving me a good start up the driveway. For now, this gets me through. To harden a couple of remaining loose patches of gravel, Gary brought one more bag of concrete to add over the top. So now it comes to about $90.

As has been stressed over and over by the Department of Justice and many others since introduction of the Americans with Disabilities Act of 1990, access accommodations needn’t be expensive — they only take a willingness to do them. Praise be for good friends who make life a joy. Meanwhile, I’ve found another contact for gravel, and we’ll see how it goes.

World Gone Sideways: Bedsore Recovery Turns Life Topsy-Tervy

I ruptured my hull.

I done sprung a pressure sore down there, on my business end. Actually not a pressure sore, it’s a pressure “sort of”: started with a tiny cut, a fissure in the skin. When we found it I stayed in bed the whole next day, that’s how seriously I took it, and in the morning it looked safe to sail again. I kept my sails trimmed, lying back frequently in my wheelchair to take pressure off, and everything was cool.

But the next morning, we were taking on water. The split had splat. The cut had widened into … well, you don’t need the details. But now it was a thing, with its own address. It had set up shop.

For a wheelchair user this is a code red. We do our best work on our asses. Some of us even are asses. Getting a wound there would be something like a nondisabled person stepping on a nail or broken bottle, except a wheelchair user doesn’t have a second, uninjured ass he can still get around on with a crutch for a couple of weeks.

Unless you’re lucky, these things heal slow, so I’ve been in bed since last week. Once I spent the better part of a summer in bed, biding my time. When I finally made my way out of the house in late August, the bluest sky in history was out there waiting for me, blUing its ever-lovin’ top off, right above my head. Heavenly days!

But back to the here and now. In true Texas fashion, where we go bigger and more catastrophic than anyplace else, my lovely wife tripped while she was walking the critter, and landed hard on her shoulder. The urgent care center said nothing had broken or ruptured, so she’s been going around doing everything, including the caregiving, with one arm. Baby’s still got chops, but does em at half-speed.

Capsized  

A couple of weeks in, we’re generally on the mend but it’s slow going. Mary Anne is the quickest of studies, learning how to do everything one-handed, and taking more breaks through the day. She has new respect for our friend Judy, who was born with half an arm. “How ever does she put on her bra?” Judy loved that.

I am lying on my side now writing you this. And we can't get the laptop computer to lie at the same angle as my face, so it's … weird. My world is tilted, like the bad guys' hideouts in the Batman TV show.

Mary Anne made some fried rice, zapped up with sambal oelek pepper paste from Indonesia. Sitting on a stool, she feeds us the spicy rice as I lie capsized in bed. It’s at once pathetic and more romantic than our first date together, which was 35 years and 10 days ago.

But we’ll survive and rise again, like we’ve done before, then, down the line, stumble into another breakdown, so that we can rise again from that one. The waves they go up and down, but always they carry us forward. Anchors aweigh.

MS anti-inflammation and improvement from a cheap, safe OTC supplement we all know?

Studies show that oral N-acetylglucosamine produced benefits for remitting-relapsing, primary progressive and secondary progressive types of MS. After one month, nearly one-third of subjects reported less disability. No serious side effects were seen even after supplementing for long periods of time. As of last summer, the National Institutes of Health was continuing to study it, but as lead researcher Dr. Michael Demetriou of University of California Irvine School of Medicine points out, "Anyone can get their hands on [it now] if they have $20."

And that’s just what I’ve done, except that it was $17.99 — for potential MS anti-inflammation and symptom improvement.

I don’t know how many out there are like me, but I’m without an MS treatment. With primary progressive MS like mine, there are few disease-modifying drugs available. The DMT most prescribed for PPMS is Ocrevus, but my neurologist, who was one of the researchers that helped to get the drug approved, strongly warned me away from it because of the risk of respiratory infections that I, as a full-time wheelchair user, may not be able to fight off. So while the MS Society recommends that everyone with MS should be on a DMT, I haven’t been on one for years. At this point my case is only very gradually worsening, but I don’t know how much more spinal cord I have left before I develop breathing and swallowing problems or more.

Then, instead of just playing defense with symptom management alone, I’m been open to looking at promising research-study results. Nothing crazy. I stick to NIH-related stuff. One of my past neuros, who had MS himself, pointed me to a study about intermittent fasting, which I read and, yes, gave a try for a few months. It wasn’t for me, but I tried.

Another, I still stick to. Overcoming Multiple Sclerosis is a program started by Dr. George Jelinek in Australia, who has MS and went through the scientific literature of the time to come up with his protocol. It’s a number of lifestyle changes, like exercise, meditation, minimizing stress and taking daily omega-3 fatty acids in the form of flaxseed oil. The most difficult step for most would be the largely plant-based whole foods diet, except for allowing various cold-water fish — so really it’s a pescatarian diet. The thinking behind it is to minimize saturated fats, which according to the work of influential doctors Swank and McDougall, contribute to the most rapid MS deterioration. I tried going the extra step of cutting out meat altogether, since I was 95% of the way there already, and I did fine with it, and have been vegan now for about a dozen years.

There are no miraculous cures anywhere on this page. OMS is about maximizing your well-being while living with MS, including using DMT’S, Jelinek writes.

Still, taking glucosamine — make sure it’s oral N-acetylglucosamine for best results — which is available for cheap at your local anywhere store, to maybe get both anti-inflammation and improvement? With little or no side effects? Tantalizing, yes?

Related articles:

https://jneuroinflammation.biomedcentral.com/articles/10.1186/s12974-023-02893-9

https://www.webmd.com/multiple-sclerosis/news/20240710/could-help-be-coming-for-progressive-multiple-sclerosis

https://multiplesclerosisnewstoday.com/news-posts/2023/09/19/sugar-molecule-supplements-glcnac-may-ease-inflammation-ms-trial/

https://www.ucihealth.org/news/2024/07/progressive-multiple-sclerosis

https://tinyurl.com/baj4ejzb

https://multiplesclerosisnewstoday.com/news-posts/2020/10/09/simple-sugar-molecule-may-be-potential-myelin-repairing-therapy-multiple-sclerosis-mouse-study/

Be Like Boye

This has been a hard one to post. I wrote most of it a couple weeks ago, but for some reason, have been putting off posting it.

I’m writing this tribute to my friend we lost recently, MsBoye Nagle. When we hear warnings that death can come for us at any time, this is it. I’m sorting my feelings by writing.

It is Christmas Eve, when we remember our shades, our ghosts, and now she is one of them — who will always be one of the special, joyful ones. Poet, actor, teacher, coach, mentor, MC, activist, Brahma, cheerleader, friend. She’s still eerily near the top of my email inbox. Most of all I hate writing and reading this because I’m talking about her in the third-person, like she’s a past event, like she’s a stone monument already, when I still think of her in the second-person: MsBoye, when are we finally hanging out? When you have time? I’m sorry I made you wait. I was busy doing stupid things. When are we going to work together again?

I, in the first-person, feel like a fool that she had to leave for me to say these things. Ineffectual words, like throwing water against a wall. Is this all posturing, or am I going to do better?

I have to explain that I’ve only ever known her in two dimensions, on my computer screen. I joined Art Spark Texas’ disability-centered Speaking Advocates program, where she was teacher, as a lockdown thing to do. We spent more time together working on the True Tales of Disability Advocates podcast, and over the years at the Lion & Pirate Open Mics, but it was always remotely. This was the year we were going to meet, when we were going to hang out. You’d think someone with a progressive illness like me would have a better respect for time: As the sands fill the hourglass, they’re also burying more and more of my body.  But at this instant, if I could pull one of my arms free, I’d shake a fist not at fate, not at the doctors, but at myself. Maybe I’m having my Ebenezer Scrooge-morning-after moment. Maybe MsBoye is teaching me something still.

Always I marveled at her bottomless well of poetry. I marveled whenever I got to hear her recite it. She was wonderful. 

I learned a lot from her about embracing others, and embracing myself. That my story is good enough to tell, so to let it spill — just set a timer and write, write, dash, race to the end. She was always quick with a compliment and encouragement, and hearing her say time and again I have a British sense of humor, made me feel a kinship with her.

I’m certain she made everyone in this room feel just as special. Some possess that rare gift, and others like me are just lucky to fall in with them.

She was one of a kind, and, as our friend Birdman said at her memorial, completely genuine. It was moving to hear how she enriched and supported so many with her many talents and interests. She lived her life thoroughly. It’s mind-boggling when someone with energy like that simply ceases to be. But does she really? Because she is playing out in each of us who knew her – that’s the kind of impact she had, demonstrating an impact that we all could have.

Our friend Thom Moon compared her to a long line of the great poets through the ages. She belongs in that pantheon. For her work, for her ways, for her spirit. According to Thom, the great poet-spirit was like an undying flame that gets passed on through time — that she carried the same flame as Homer, Shakespeare, Wordsworth (who our friend Eric Clow read from), Byron, Nikki Giovanni, Andrei Codrescu and others. So, to Thom, she’s always with us, and if that’s the case, then I get a chance to say, “Heartfelt thanks to you, my friend. I miss you.”

 

Who Gives a Care?: Plans To Help the Sandwich Generation and the Growing Care Crisis

Don’t you get nervous talking to attorneys? I do, and it’s been a nervous time for me lately.

I’ve been calling lawyers to ask about opening a trust — no, I don’t really know what that is either, except I keep reading advice that I should look into one, like, right now. You see, with advanced and progressing MS, and with my wife and I both being seniors, we have a good-enough chance of needing care down the line. While full-time home care can cost nearly $69,000 a year (CNN) and a nursing facility at least $104,000 yearly (KFF), our home and life’s savings won’t last long. To get any assistance, we’d have to qualify for Medicaid, which requires selling off the home from under my wife. My nervousness talking to attorneys is a small price to pay.

 francescoridolfi.com | Credit: Rido - stock.adobe.com

We’re not alone. Seventy percent of us who live to be seniors will need care, according to the Urban Institute. More than 105 million in the “sandwich generation” are caregivers of some sort, a number that has more than doubled in the last decade (Rand Corporation). More than 14 million are caring for service members or veterans. Two-thirds of them have to balance this with a job, and often they take a hit in income by having to go to part-time work or taking time off (AARP).

Seventy percent of seniors. One hundred four million people. Hm, think there’s a constituency there? Seniors just happen to be the most reliable voters, too.

Citing her own experiences caring for her late mother battling cancer, Vice Pres. Kamala Harris has proposed a Medicare at Home program, which would expand Medicare to help with home care costs for seniors and people with disabilities who might earn too much to qualify for Medicaid but cannot afford long-term care. She also wants to cap child care costs at 7% of income, pass paid family and medical leave, and raise wages for care workers. (The last one’s critical, because there is already a severe shortage of care workers due to the poor pay.) She proposes paying for this with savings from negotiating more prescription drug prices down with pharmaceutical makers, which has already been successful with a handful of drugs under 2022’s Inflation Reduction Act.

This follows Pres. Biden’s ambitious 2021 proposal to invest $400 billion in care services for children, seniors and people with disabilities. That part of the Build Back Better bill got shot down in haggling with Congress, but it was a bold target to set. Now the idea out there.

The need is great: I have spoken to an at-home care coordinator in Pennsylvania who says people in her area are stuck in nursing homes not because they need intensive care, but because there are no home workers available so that they can live a place of their own in the community. Also I’ve talked to the head of a statewide network of care workers in Austin, Texas, who recited a list of care workers she knows who, out of love, continue to work beyond what their aging bodies can handle, because there are no younger workers to take their place in caring for their clients. According to Nicole Jorwic, who has long watched the issue as head of advocacy at nonprofit Caring Across Generations in Washington, D.C., "It doesn't matter if you're in Portland or if you're in central Illinois, … it is a nationwide problem.” Plus, she noted, the population is aging and the need for care will only increase.

This weekend Donald Trump proposed a tax credit be given to family caregivers. Advocates like Jorwic are skeptical without details or ideas to build up the needed care “infrastructure,” i.e., creating more care workers and supports. But the point is that the care issue is on everyone’s radar now, and that’s good for us.

But for now, I pick up the phone, and prepare to get nervous again. Go vote and let them know we’re out here, people.

Looking for Dr. Right (Cause the difference between a good doctor and the right doctor is huge.)

Imagine you and your roommates are desperate for a bite to eat, and at long last some carts roll in. Everyone gets a covered dish, all but you — before you can even ask, somebody says, “Oh no, that’s not for you. Wait until the next round of carts.” The dishes are uncovered, and there’s some grousing but everyone chows down, right in front of you. Then another round of carts shows up and the roommates get a choice to change over to those meals. All but you again, because “Oh no, that’s not for you either. Wait until the next round.” On and on this goes, for years.

Let’s hear it from the other primary progressive MSers with plate-envy. Most cases of MS are diagnosed as remitting-relapsing, with distinct attacks of symptoms, and for whatever reason, most of the medicines treat that variant. In comparison, those with primary progressive have gone with empty plates until recent years and a treatment approved for PPMS, Ocrevus — but I’ll get to that later.

Johnny, tell him about our exciting parting gifts.

Over my decades with MS, I’ve been on a couple of disease-modifying treatments, with little results. As my condition progressed, my treatment screeched to a standstill. Though my chief neurologist in those years was a leader in the field, I received little medical support or encouragement, other than the occasional round of physical therapy I requested. Pretty much all of the treatments that came out after Betaseron did in 1993 were named “Oh no, that’s not for you.” That’s all I was hearing, so that became the attitude that seeped in and I settled into a kind of long-term funk. If my expectations were low, my morale and self-esteem were probably even lower.

Then a crazy thing happened on Reddit, of all places. There was a new treatment out, Ocrevus, and someone had found a doctor across town who was one of the drug’s researchers. The Redditer was eager to try the treatment because she felt kicked around by the disease and the medical establishment since her diagnosis eight years ago. Welp, eight years? What about 25 years, which was how long I’d been struggling? Frankly I was getting sick and tired of hearing people complaining about MS — which of course they’re going to complain because they’re frightened and frustrated — but for that one moment I’m thinking, ‘My case is so much worse than almost every case I’ve encountered.’ And here I was, getting passed up yet again, this time by someone who has had the diagnosis less than half as long as me. What about me? What am I to the medical establishment?

I was fed up and tired of eating from everybody else’s dog dish. From the info online, I found a research nurse who worked with this doctor and I contacted her, hoping she wouldn’t hang up on me. No, instead she helped me schedule with her doctor! The clouds parted and the angels sang and my jaw dropped to the floor so hard I had to winch it back into place. I floated around for the rest of the day, singing and whistling with the bluebirds like I was Snow White or something (but sounding more like Dopey).

Bringing it.

I went to the appointment to ask for Ocrevus, which was being promoted for PPMS, and the answer I got was “Oh no, that’s not for you”: It turned out that Ocrevus carried a risk of respiratory infection that I’m ill-prepared to fight off. So why was I so happy, ready to hang out with muh bluebirds when I left the office?

The difference was that the new doctor and nurse had a plan, an entire anti-MS battle map. This was an appointment that changed my life forever. My MS would not get treated directly, but there was a cascade of MS side effects that we would be taking on, with a whole team of medical pros. A new rehab doctor would be managing the great amount of spasticity/muscle tone causing me stiffness and fatigue, and hardship (even hazards) for my wife as my caregiver. A new pain surgeon would be giving me a baclofen pump implant to address spasticity more effectively than any oral tablets could. A new urologist would give me a suprapubic catheter, to manage ever trickier bladder issues. A new physiatrist would eventually give me Botox injections to better control my muscles and fatigue. New physical and occupational therapists would be there to help me learn these new ropes.

It was a lot of appointments, for sure, but as long as my insurance held steady, I didn’t feel put out or overwhelmed. Rather, I was energized: I went from nothing-going-on, to a whole bunch of stuff going on, for my wife and me both. Each of my new team was in touch with the others, so I felt supported like never before. This was the opposite of “that’s not for you.” There were tangible improvements happening in our lives.

My new rehab doctor, whom I hadn’t even met, told me over the speakerphone, “We’re going to give you a new body.” My wife beside me had tears running down her face. Something was happening — for me, for us — at last. We had a medical team to consult with, who had our backs and listened. Seriously it felt like the doctor and nurse possessed a golden key that unlocked the great puzzle that was my world.

Since then, I’ve added and made changes to my team. This felt like such an awakening in my life, like I had come back from the dead. Starting here, I gained a lot of momentum in life. The only other thing that compares is finding my friend Dave Perez and the Skydiving for MS event he offered in my area. Both moments felt like I was shaking off a lot of rust and getting off to a running start again in life. Life can pass you by quick, so be careful of remaining still for too long.

You best heed, whippersnapper.

Finding my health care team and improving on it over the years was a godsend. It’s something I recommend to everyone. Usually it’s difficult to find those doctors who take time with you and listen and function as collaborators and team partners, but once you find them you’ll see how worthwhile it is.

Mark Twain said “the difference between the almost-right word and the right word is … the difference between the lightning bug and the lightning.” Here’s wishing you lightning and inspiration in your upcoming appointments: I want you to hear, “Oh yes, I’ve got ideas for you.” There is a huge difference between a good doctor and the right doctor, just like there’s a huge difference between “oh no, that’s not for you” and an appointment that will change your life.