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Tremors of Intent

MS Cooling Tips

Since June, my part of Pennsylvania’s been hit with one heat wave after another, all the way to August, when it’s just generally HOT. For us, a heat wave means temps in the high ‘90s for more than a few days, and we broke 100 quite often. Also, on top of the heat, we typically have very high humidity.

For me, this has meant being stuck inside or darting from air conditioner to air conditioner. But I figured out some tricks that made it bearable that I thought I’d share.

Airy, broad-rimmed hats: If you can’t find shade, create your own with

Read More | 1 Comments | Aug 20 08:25

20th Anniversary of ADA Reflection

This is from my friend, Joelle Brouner, who posted it as a note on Facebook. She’s the executive director of the State of Washington’s Rehab Council, and also is a woman with CP. Enjoy, and please feel free to add your own.

July 26th marks the twentieth anniversary of the passage of the Americans with Disabilities Act, landmark civil rights legislation. It has not made the U.S. fully accessible. The struggle continues. But part of the world is more open. Whether you have a disability or not, you are invited to join in a year of celebration. There are reasons to

Read More | 1 Comments | Jul 26 02:05

Community Choice Act: Recession Proof

From Arnieville out on the West Coast to lawsuits battling Medicaid cuts in Colorado, it’s clear the recession is far from over when it comes to services people with

Read More | 6 Comments | Jun 17 10:09

Very Special Glee Episode

So, what did you think of last night’s Glee episode, featuring real-life quadriplegic Zack Weinstein?


Glee follows a high school glee club, and features a diverse cast of students ranging from Asian to gay to Jewish to wheelchair user. It’s a musical show, and at any time someone might just burst into song. The show often

Read More | 4 Comments | May 12 08:35

Hope, Love, Trust and ADAPT

Here’s a shout out to all the ADAPTers in Washington, D.C., this week marching in the chilly rain and taking on our nation’s powers-that-be.

If you want to know what ADAPT is demanding, follow the action here. It’s good stuff, and, as I’ve said before, as ADAPT goes, so, eventually, does the rest of our community.

I’m obsessed with ADAPT. It is a social phenomenon, much bigger than the issues it activates for, and it is — I believe — constantly reshaping who we

Read More | 1 Comments | Apr 27 11:30

ADA: A Personal Reminiscence

Today is Monday, April 26, 2010, three months away from the 20th anniversary of our civil rights law, the Americans with Disabilities Act.

This marks a personal anniversary for me as well. Twenty years ago this summer I attended a cookout at a friend of a friend’s and was told about a job opening at the agency where this friend’s friend was a manager. I’d been out of work for awhile, subsisting on temp jobs, as there wasn’t a lot of work in Pittsburgh at the time for someone who studied English lit in college. The job was humble — answering phones

Read More | 0 Comments | Apr 26 02:40

ADA Celebration, New Mobility Style

Our civil rights law turns 20 this July 26 and we’re celebrating New Mobility style. What’s that mean? Well, it means we’re going to ask a whole bunch of experts to tell us how the ADA has affected them personally over the years, and the positive ways our society’s attitudes have changed toward those of us with disabilities. Also, we’ll also ask these experts for stories about how, perhaps, times haven’t been a’changin’ as much as we’d like.

So who are these experts? Why, YOU, of course! To participate, just fill out a quick

Read More | 0 Comments | Apr 22 10:10

I Choose to Be Me

I’m writing this blog entry from a small art studio – art shed, actually – on Herrbrook Farm, located in the center of Pennsylvania Dutch country in Lancaster County. Herrbrook Farm is owned by a Mennonite family that sets aside a few buildings for people who need space to create or rejuvenate or, as in my case, both. The art shed’s next door to the “retreat cottage,” which is heated by a wood burning stove. I woke up about three times last night to the sound of popping wood and fire-fueled dancing shadows. It’s a little bit scary and awfully

Read More | 2 Comments | Mar 16 10:44

ADAPT's Marsha Katz Weighs In

Marsha Katz, who wrote the following entry, is best known as ADAPT's spokesperson.

Read More | 2 Comments | Feb 26 02:23

The Employment Advocacy Debate Continues

Following is a comment by Cripchick passionately disagreeing with my employment entry that I found on Laura Hershey’s site. All I know about Cripchick is what I’ve read on her blog. She has interesting opinions backed by a strong voice and I look forward to hearing more from her.


Read More | 3 Comments | Feb 26 01:25

More Thoughts on Poverty, Employment

Hi Laura,

I’ve taken my time to respond formally to your blog entry because it’s still an issue I’m thinking through. “It” being how to envision new ways to try to stem the incredible poverty in our community, and how to create more pathways for people to escape — or to not fall into poverty to begin with. I see employment as the best way to accomplish this for the largest amount of people. Additionally, I agree with you very much that poverty should not be linked to suffering. The latter is one reason why many of our best advocates don’t

Read More | 0 Comments | Feb 13 01:27

Debating Advocacy Priorities

This response by Laura Hershey, one of our movement's foundational thinkers, is too good not to share:

Debating Advocacy Priorities: Free the Oppressed, or Promote Employment?

By Laura Hershey

Always willing to challenge the disability rights movement with provocative ideas, my friend Josie Byzek has now written a column calling on our advocacy movement to make employment a top priority. It

Read More | 4 Comments | Feb 04 01:42

Eggheady Thoughts on Employment

By now you’ve probably seen the funny Think Beyond the Label commercial that encourages businesses to hire people with disabilities. If not, you can watch the commercial here, and read an excellent New York Times article about the campaign here.

This campaign focuses on an issue that – strangely – isn’t a high

Read More | 3 Comments | Feb 03 10:51

Relief for Haitians with Disabilities

Paul Timmons, board chair of the disaster-relief group Portlight Strategies, says there’s a good reason his group focuses on people with disabilities. “It’s a screaming need,” says Timmons, who has a physical disability himself. “The large relief providers, almost without exception, don’t even have us on their radar, much less in their sights. Things as simple as shelter accessibility get overlooked.” And don’t get him started on FEMA.

Read More | 1 Comments | Jan 19 11:48

Swine Flu, MS and Vaccines

“I am Lazarus, come from the dead,

Come back to tell you all, I shall tell you all”

— T.S. Eliot, in “The Love Song of J. Alfred Prufrock


Obviously I haven’t yet actually died from swine flu, although a few times I have begged God to just kill me. A bit melodramatic, to be sure. But now that I think I truly am finally recovering, I feel a kinship with Lazarus.

The flu means fever, and fevers with MS are terrifying. I’ve been through enough to have a plan: Basically, I don’t let ibuprofen out of my

Read More | 0 Comments | Dec 15 12:32

Health Care Reform: Shhh ... Let it Cook

Within the disability community, we’re all being very quiet and polite right now about health care reform. I don’t know if you noticed, but there haven’t been any big action alerts, rallies or even publicized meetings among our activists about the issue in quite a while.

It’s like this whole process is a soufflé of sorts and we don’t want it to implode. Well, when I say “we,” I mean generally those of us who see ourselves as left of center, politically. Partisans on the right are jumping up and down and doing all they can to get

Read More | 5 Comments | Nov 24 10:15

Thoughts on Compost

I’ve been thinking lately about compost.

Gardening is brutal. To cultivate what we desire, we murder a lot of perfectly-fine plants. And most of us dispose of our victims’ bodies – the weeds, the saplings, the beautiful-but-unloved bushes – on a compost pile. Some folks do it right and mix in coffee grounds, egg shells and organic dinner left-overs. I suspect most are like me: We dump our clippings and then make sure they’re turned once or twice a season. The reward is richer soil and free mulch for our gardens. Every gardener knows what grows thrives

Read More | 2 Comments | Nov 05 03:53
 
Website Services: Degnan, Co.

Tremors of Intent

By Josie Byzek

I'm sarcastic as hell, have an egg-head streak a mile wide and have called the disability community my home since 1990, when I got a job answering phones at the Pittsburgh Center for Independent Living. Since then I've been an advocate, activist, thinker and — above all else — a writer on all things disability related. I knew since the '80s I had something going on with my body, but didn't get diagnosed with MS until 1998 when I finally had a relapse severe enough to be measured and weighed by doctors. I currently live in Pennsylvania's state capitol with my partner and our little hound dog.


More Posts
  • MS Cooling Tips
  • 20th Anniversary of ADA Reflection
  • Community Choice Act: Recession Proof
  • Very Special Glee Episode
  • Hope, Love, Trust and ADAPT
  • ADA: A Personal Reminiscence
  • ADA Celebration, New Mobility Style
  • I Choose to Be Me
  • ADAPT's Marsha Katz Weighs In
  • The Employment Advocacy Debate Continues
  • More Thoughts on Poverty, Employment
  • Debating Advocacy Priorities
  • Eggheady Thoughts on Employment
  • Relief for Haitians with Disabilities
  • Swine Flu, MS and Vaccines
  • Health Care Reform: Shhh ... Let it Cook
  • Thoughts on Compost
  • ADAPT's Marsha Katz Responds
  • ADAPT is Crazy
  • On Democracy
  • Hurricane Katrina: The Doctors' Choice
  • Power Wheelchairs and Health Care Reform
  • Yet Even More on Health Care
  • Health Care Update
  • Obama's ADA Speech Bombs
  • There is no Obama Health Care Plan
  • The Year of Community Living
  • Obama's Latest Disability Appointment
  • Obama Health Care Plan Details
  • Obama, Axelrod, Institutions ... uh oh
  • White House Questions and Conjecture
  • Stem Cells from Body Fat
  • Obama's Crip Problem
  • Paterson Spoof and Bloomie Blow-up
  • Navigating My Personal Energy Crisis
  • Understanding the Stim Package
  • Hey, Mr. President!
  • Dear Mark,
  • The Lewis Argument: Pity vs. Dignity
  • Time for a New Myth
  • Stop Humanitarian Award for Lewis
  • Let's Play ADA Mad Libs!
  • Accessible America Deadline is WEDNESDAY
  • Stocks Plummet as Tysabri Kills Again
  • Crime, Punishment and Quadriplegia
  • My Thanksgiving Gratitude List
  • WGAL Responds
  • Life, Death and Spinal Muscular Atrophy
  • Congratulations! Now get to work.
  • Goodbye, Sen. Rhoades
  • Political Thongs
  • ADA Amendments Act Silently Signed
  • Uber-Liberal Rep. Frank Arrests ADAPT
  • McCain/Palin Won't Budge on CCA
  • Some Lessons from 9/11
  • McCain and Palin, Bad News for Us
  • Michele Obama About her Dad, who had MS
  • Tropic Thunder is a Satire, Folks!
  • ADA Bill and Regs: What's the Diff?
  • McCain says No to Community Choice
  • Congratulate me on my new DORK VEST
  • Goodbye, Harriet
  • What Makes Crips so Tasty?
  • McCain has 40 ADAPT Activists Arrested
  • YES, I drank the Obama Kool-Ade!
  • Dear Hillary
  • Crip, Gimp and Other Naughty Words
  • Medical Lawsuits Gonna Get Harder
  • Barack Obama and Terri Schiavo
  • Justice! Florida Deputy Charged
  • Cop Dumps Quad from Wheelchair
  • We All Walk in Different Shoes
  • Fighting Back a Rogue Supreme Court
  • Funny Superbowl Ad in ASL
  • And Vying for the Disability Vote are...
  • New Ad Focuses on Candidate's Disability
  • The Candidates and Disability Issues
  • What Comes Next?
  • My Top 10 News Stories of 2007
  • Cartoon Characters with Disabilities
  • Personal Assistance and Turning 60
  • Stem Cells from Human Skin
  • Lights, Tints, and Equal Access
  • Deities and Disabilities
  • Goddesses, Freaks and Parasites
  • Strange but True Voting Tale
  • Damn You, Michael Gerson!
  • In Praise of Coffee
  • Flamethrowers, Family and Fatigue
  • Dying for Services
  • ADA Restoration: Help Pack the Room!
  • The Inevitable Nursing Home Bed
  • My Presidential Wish-List
  • Taking a Day Off on Account of Sun
  • Drug-related Injuries and Deaths
  • Oh, Sure, GLAAD Gets an Apology ...
  • The Quotable Jerry Lewis
  • Bring it on, U.S. Chamber of Commerce!
  • It's Time to Fix the ADA
  • Minneapolis' Marcelo Cruz and the Media
  • Voting: Talking with the Advocates
  • A Shout-Out to Rural Pennsylvania
  • An Accessible Voting Primer
  • Voting Machines: Access vs. Integrity?
  • I Have MS but I Don't Have CRABs!
  • More Thoughts on the Ashley Treatment
  • MiCASSA No Longer Exists
  • Red Machines, Blue Paper Trails
  • Baby-Free Stem Cells
  • Let the Crippled People Demonstrate
  • Ashley, Jack and CMS
  • Ask About the Sign
  • Don Imus, Slurs and Lame