1986 Mobile Press-Register Article: on specialness and surviving

This 1986 Press-Register article about me, Jamie and Mom, especially Jamie, surviving the rare disease, was digitized by my Aunt Nancy in Virginia. Thank you. Mom gave me permission to post this here. It’s so old the newspaper was still called the PRESS-REGISTER! Back then the medical knowledge and approach to mitochondrial myopathies was much … Continue reading “1986 Mobile Press-Register Article: on specialness and surviving”

The ADAPT Ice Bucket Challenge: An #IceBucketChallenge for Community Inclusion! /memeHijack

My Mom Taught Me – Subvert The Dominant Paradigm remember to turn the subtitles on. [my shirt says: FREE OUR PEOPLE  BIG APPLE ADAPT] When Alejandra mentioned to me that even Raul, like me one of two brothers with an uber rare muscle mitochondrial thing, on a ventilator full time and an awesome advocate too, went ahead … Continue reading “The ADAPT Ice Bucket Challenge: An #IceBucketChallenge for Community Inclusion! /memeHijack”

Diamonds in the Rough ‘n Tumble Webternets: What Med-people of Conscience Are Blogging (Part 4/4)

Part 4 of 4 of the series When Life and Death is “A Matter of Policy” For part 2, I wrote an overview of some of the bad things that have occurred when people in medical settings follow policy strictly even when it leads to horrible consequences, or in the case of Eric Garner, they … Continue reading “Diamonds in the Rough ‘n Tumble Webternets: What Med-people of Conscience Are Blogging (Part 4/4)”

Medical Bureaucracy: Switching Your Ventilator “Because Policy” (Part 1/4)

Part 1 of 4 of the series: When Life and Death is “A Matter of Policy” As I mentioned recently in the quasi-mission statement of the blog, I create bloggings to ask the right questions, to illuminate the unseen issues facing us ignored vulnerable groups, or that’s the goal.  Within that is the idea that … Continue reading “Medical Bureaucracy: Switching Your Ventilator “Because Policy” (Part 1/4)”

The Coler Chronicles: Collected Bloggings of the Institution Days

Dispatches from Ventboy Alcatraz From inside the walls of the institution, Coler-Goldwater, I continued to create content, to blog, and we added video blogging from the inside. I wrote the following blog posts about the institution, where I lived from August 28, 2008 to September 10, 2009: Hey everyone I almost died again – October 15th, … Continue reading “The Coler Chronicles: Collected Bloggings of the Institution Days”

Video: “Aging Out” of the health care needed to survive at 21 threatens future of two Florida college students

The 21 cut-off, the policy that I fought hard to change in Alabama with a full campaign that I began two years before the cut-off would hit on my 21st birthday, and now I fight on this blog, is still a threat to many around the country. As people with severe disabilities are saved by … Continue reading “Video: “Aging Out” of the health care needed to survive at 21 threatens future of two Florida college students”

How ACA “ObamaCare” Exchanges Work: A Nick Animation

I made the above animated vignette to explain how the health insurance exchanges being established under the Affordable Care Act (ACA), online marketplaces for “shopping” for health insurance, roughly, will work. People will begin signing up for health insurance plans on the exchanges October 1st, and those plans will go into effect Jan 1st, 2014. … Continue reading “How ACA “ObamaCare” Exchanges Work: A Nick Animation”

Public Policy and Activism: The Harm of Denial

The bulk of this post was taken from a piece of my upcoming memoir I’ve left on the cutting room floor. It’s like 12-step programs say, “the first step to recovery is admitting you have a problem.” So just getting people to understand that people with disabilities exist and admit that there are multiple, severe … Continue reading “Public Policy and Activism: The Harm of Denial”

What Is ObamaCare? 2013-2014: Overview Part 2—Medicaid expansion

An ObamaCare Overview 2013-2014 Part 2: Medicaid Expansion This is the second part of a two-part blog post: click here for Part 1 In the 2013-2014 period, states must decide whether to opt-in or opt-out of the “Medicaid expansion.” Though it pains me deeply that the Affordable Care Act doesn’t fix any of the problems … Continue reading “What Is ObamaCare? 2013-2014: Overview Part 2—Medicaid expansion”

What Is ObamaCare? 2013-2014: Overview Part 1 (Insurance Subsidies)

An ObamaCare Overview 2013-2014: Part 1 Oh man, I am so frustrated that people misunderstand ObamaCare—the Affordable Care Act (ACA)—and continually frame it as something it’s not. They frame it as some sort of universal health care coverage, or as some vague new program that replaces Medicare and Medicaid, or at least fixes their most … Continue reading “What Is ObamaCare? 2013-2014: Overview Part 1 (Insurance Subsidies)”

Chris Week: Ninth Anniversary—RIP Chris

I’ve been thinking about my friend Chris a lot this week, especially in the days preceding and following March 4th, when the tragedy that took him happened. When I was little, Chris was the bigger kid, both in age (four years older) and heft (kids with Duchenne Muscular Dystrophy—DMD, which I don’t have—tend to be … Continue reading “Chris Week: Ninth Anniversary—RIP Chris”

Mitt Romney: Can You Help Us, Mr. Fix It? (Part 2)

Continuing my comments on Mitt Romney’s “very ample safety net” statement on CNN; see the first half of my post: Mitt Romney: Can You Help Us, Mr. Fix It? (Part 1)… So, as I said in Part 1, it’s very important to assess presidential candidates in a just and fair manner, and too often the … Continue reading “Mitt Romney: Can You Help Us, Mr. Fix It? (Part 2)”

Mitt Romney: Can You Help Us, Mr. Fix It? (Part 1)

  So, there’s been a dust up over Mitt Romney’s “I’m not concerned about the very poor” comments on CNN.  A lot of the blogosphere is mindlessly blasting this quote sans context, and the TV news even worse, so Team Romney isn’t wrong to protest how this has been “taken out of context.”  Cable news … Continue reading “Mitt Romney: Can You Help Us, Mr. Fix It? (Part 1)”

The Social vs. Medical Model of Disability, Communities Will Be Forced To Choose

You may or may not know about the medical model and the social model of disability. I wanted to talk about the social model of services and supports for people with disabilities, and barriers to implementing it. When you think about disability internationally, most disabled people in countries around the world are taken care of … Continue reading “The Social vs. Medical Model of Disability, Communities Will Be Forced To Choose”

Rain Man (1988) and Hollywood’s treatment of disability

Hollywood Images of Disability (CHF EDIT) from salome chasnoff on Vimeo. Everyone interested in disability rights should watch this 18min short “Hollywood Images of Disability,” about Hollywood’s terrible treatment of disability, which is normally depicted as something so deformed, so unspeakably terrifying that disabled characters have to be cured (Heidi, Monkey Shines, Avatar, and zillions … Continue reading “Rain Man (1988) and Hollywood’s treatment of disability”

For MLK Day, this newsletter clipping about a speech I gave at Rev. King’s old church in Montgomery

The University of Alabama Alabama Disabilities Advocacy Program School of Law Clinical Program 2003 Alabama Disability Summit On August 14, 2003 the Alabama Disabilities Advocacy Program hosted its third annual Disability Summit. Disability rights activists, advocates, consumers, family members, and others gathered at the historic Dexter Avenue King Memorial Baptist Church for a morning session … Continue reading “For MLK Day, this newsletter clipping about a speech I gave at Rev. King’s old church in Montgomery”

The Cost of Denial For People with Disabilities

To respond to the comments made during WBAI radio’s roundtable discussion about my latest blog essay “Why It’s Time For Survival Politics For People with Disabilities…” The last statement in the radio segment about my blog was Josie Byzek saying that (my paraphrasing) the Tea Party may win big in the midterm elections, but then … Continue reading “The Cost of Denial For People with Disabilities”

Nick’s Crusade Blog Featured On Local Radio WBAI!

My blog posts are making waves! My new blog essay about the affect of the Tea Party and the related drastic benefit changes on people with disabilities was the subject of a roundtable discussion this morning on local WBAI radio’s disability chat show “The Largest Minority.” You can listen to the radio discussion here. Sept. … Continue reading “Nick’s Crusade Blog Featured On Local Radio WBAI!”

Why It’s Time For Survival Politics For People with Disabilities

To listen to WBAI radio’s roundtable discussion about the below essay, go here. This isn’t “The Great Recession,” it’s “The Great Change.” The recession–that is just a symptom of these enormous tectonic shifts going on (societally, technologically, economically, politically) and our inability to keep up has caused disruptions and economic downturn. That economic downturn is … Continue reading “Why It’s Time For Survival Politics For People with Disabilities”

This Is All You Need To Know About This Year’s MDA Telethon

Lots of people are, as always, posting about the MDA Telethon this Labor Day weekend (I recommend this piece by Laura Hershey). Usually the focus is on smashing the negative images (pity) that the MDA Telethon often conveys, and that is crucial because the Telethon brings to all corners of the U.S. the most-watched images … Continue reading “This Is All You Need To Know About This Year’s MDA Telethon”

Feds Fiddling While State Medicaid Programs BURN

Question: In light of Obama’s plan to expand Medicaid eligibility, is anyone in Congress noticing the MASSIVE state budget cuts to Medicaid across the country and ruminating about how that jives with this impending expansion? I fear that if states have to raise income eligibility and bring millions of uninsured onto the Medicaid rolls, that … Continue reading “Feds Fiddling While State Medicaid Programs BURN”

Nick’s Essay on America’s Decline, with Big Solutions (long)

I’ve been away for quite some time, I know, but I haven’t stopped thinking about public policy and the way things are going. They aren’t going well. I followed the health care reform debate with a magnifying glass throughout, and came away deeply disgusted in both the final product and the process that made that … Continue reading “Nick’s Essay on America’s Decline, with Big Solutions (long)”

ADAPT Blogswarm, Fall Action 2009

The ‘swarm has arrived! Bloggers across the globe have united to shine a light on rampant unjust institutionalization and segregation of people with disabilities and ADAPTs Fall Action in Atlanta confronting it! On Disability Unity NextStep blog WE ARE ALL IN THIS TOGETHER Finding My Way: Journey of an Uppity Intellectual Activist Crip Human Rights … Continue reading “ADAPT Blogswarm, Fall Action 2009”

ADAPT Blogswarm, Fall Action 2009 Participants!

I’ve been excited by the response to my call to blog to end institutionalization around the Fall National Action! I’m honored to announce the following blogs will be participating: PhilosopherCrip Announcement post The Roving Activist’s Blog Intro Crippled Under The Law NZ Accessibility The Center for Disability Rights Sanabitur Anima Mea Today.com’s Official Disability Rights … Continue reading “ADAPT Blogswarm, Fall Action 2009 Participants!”

Blog To End Unjust Institutionalization!

ADAPT is going back to the heart of the civil rights movement, Atlanta, to demand that the promises made to Georgians (and all Americans) by the Supreme Court in Olmstead v. L.C. and E.W. are kept. Read ADAPT’s page on the action here. Segregating people with disabilities in institutions solely because they need daily help, … Continue reading “Blog To End Unjust Institutionalization!”

It’s MDA Telethon Time Again!!

The MDA’s 44th annual Labor Day Telethon was on the TV. Since my family and I were on the local (Mobile, AL) MD Telethon several times, and my mom served a year as Mobile MDA’s president, I thought I should comment. Many activists attack the MDA for fundraising based on pity. It’s true that their … Continue reading “It’s MDA Telethon Time Again!!”

A Year In An Institution

How many months have I been institutionalized? The number of the day August 28 marked a full year I’ve been in a NYC rehab hospital. It was a bittersweet anniversary: sweet because it’s one year since I succeeded in changing my life and moving close to my girl, and bitter because of the myriad of … Continue reading “A Year In An Institution”

Fix The Broken Foundation Before Building A Skyscraper On Top Of It

My biggest beef with Health Care Reform right now is that we’re building a new tower on top of a broken foundation. Medicare and Medicaid are badly broken, and we’re building more programs on top of that. Bad idea. Insurance company bureaucracy is even worse, but federal programs have to be significantly better in the … Continue reading “Fix The Broken Foundation Before Building A Skyscraper On Top Of It”

Is The U.S. The World Leader In Disability Rights?

So, the U.S. has now signed on to the historic UN Convention on the Rights of People with Disabilities (CRPD). People are saying this is wonderful, the ACLU is saying that it marks America’s return as a world human rights leader (by the way, the Senate has yet to ratify the treaty). I’m concerned that … Continue reading “Is The U.S. The World Leader In Disability Rights?”