Nicholas Young

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Posts about disability

True Colors

Writing in Tuesday’s edition of the Fairbanks Daily News-Miner, Senator Lisa Murkowski, a crucial swing vote on both healthcare and tax reform, announced her support for the besieged GOP tax package. “I have always supported the freedom to choose,” Murkowski writes. “That is the fundamental reason why I opposed the Affordable Care Act from its inception, and also why I co-sponsored a bill to repeal the individual mandate tax as early as 2013....

Professional Jeopardy

Pain is a companion. It accompanies me when I rise, only allows brief privacy to shower, and returns with every step, turn, and bend. I tell myself this journey is temporary; not because there is a magical future when I’ll rid myself of the second shadow, but that I now have tools and medication to dim its presence. I can cope with discomfort, lost sleep, and isolation well enough; but chronic illness’ true crime is stealing life from beneath my feet....

If I Left You Behind

I have spent most of 2017 writing long-form non-fiction pieces concerning flaws in the American healthcare system, often attempting to communicate why we, as a country, shouldn’t embrace changes that would severely limit access to care for chronically ill and disabled citizens. Most words, I fear, were skimmed or disregarded; even by individuals who had offered support in the past. One by one, friends have become strangers when asked to share my articles or take simple political action that will enhance my life and the lives of those around me....

Hidden Costs of the ADA Education and Reform Act

July 26, 1990 won’t be soon forgotten. On that day, President George H. W. Bush signed what White House staff publicized as as “the most sweeping civil rights statute since the 1964 Civil Rights Bill.” The legislation prohibited discrimination in employment, public services, accomidations, and transportation, while simultaneously improving communication services for disabled individuals. Last week, H.R.620, the “ADA Education and Reform Act of 2017”, moved out of committee and will soon be voted on by the full house....

Commuting While Disabled

During the last several months, I’ve written much concerning how disabled people are only valuable to the media for their redemption stories, and why it is difficult to attain proper medical care. Last June I discussed the increase in my pain levels due to an advancing genetic condition, after I wrote an introductory post introducing you to Ehlers-Danlos Syndrome. To say I’ve spilled ink is an understatement; I even took you deep into my life with chronic illness, writing my own personal frequently asked questions addressing what I wish you understood about my fluid, but still disabling condition....

The Politics of Terror

If healthcare reform is a stage play, the curtain rose anew in November, 2016. The audience, hopeful if unsure, beheld a ragtag group of players flanking our most ill-advised main character. During the intervening months, four radically different pieces of healthcare legislation have also entered the stage, each scoring progressively worse on issues of public health. For the disabled and chronically ill, those months have been pure terror. Many have felt betrayed for the promise of lower health insurance premiums, but it’s difficult — and dangerous!...

Shades of Rare Illness

I submitted the following essay to The Cannabist last Friday in response to Season 3, Episode 9 of The Cannabist Show. Ultimately, editor Alex Pasquariello decided it wasn’t a fit for their publication, noting in his response that, “as your submission observes and a cursory Google search reveals, EDS is an incredibly complicated medical topic,” and suggested that I submit it as a comment on Facebook. This language is familiar to any disability or rare illness advocate....

Casual Ableism

In order to help you best understand the past few weeks, we begin this post listening in on a recent conversation with my neurologist. “Can you stand?” “Yes, but only for a minute or two, maximum,” I replied, his furrowed brow telling me all I needed to know. “Are your legs really that weak?” I quickly retorted. “If you’ll look at the chart, the purpose of this visit is to investigate possible small fiber neuropathy in all four limbs, plus muscle weakness and numbness in my lower extremities....

Becoming Disabled

This past week has been one of the most difficult on record. It began with preparing an application for a position I hoped to fill, while navigating the complexities of my expanding disability with a new potential employer. By Thursday, I had fallen twice and hesitantly accepted the loan of a wheelchair from Children’s Hospital. We were there for an unexpected surgery on my daughter, Sloan. I wanted nothing more than to be present for her in that moment, and my disability came between us....