Category Archives: disability

chronic disease, disability, Equality, Inequality, SSDI, SSI

Being Disabled Is a Job

June 14, 2017 BeingCharis 28 Comments

I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing?

The disability process itself mirrors these same sentiments – the 3-5 years (on average) process for applying, fighting for, and receiving disability (SSI or SSDI) in the USA is by nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up.

You usually have to be literally dying to be automatically granted disability in the USA. And yet 10,000 people still die each year just waiting for a decision. Continue reading Being Disabled Is a Job →

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, disability, Health Insurance, Healthcare, Medi-Cal, Medicaid, Mental Illness, open letter, Patient Advocacy, Politics, spondylitis, spondyloarthritis

An Open Letter to Congress from a Poor, Disabled American

May 29, 2017 BeingCharis 7 Comments

Dear Congress,

My father died last September. He was 68. He experienced severe, debilitating pain from his early teenage years until his death. I now experience similar pain from the same disease he had, Ankylosing Spondylitis (AS), and I fear daily that my life will follow the same path his did.

My dad looked like this (below) because he did not have access from a young age to effective treatments to slow down the progression of his disease:

He didn’t have access to the treatments because they didn’t exist until 2003, when the first biologic drug was approved for treating patients with AS. By that time he was already a 90-degree hunchback, his spine fused in a rigid column of bone from knobby, painful bone spurs – he was slowly suffocating. The only thing a biologic drug could do was prolong his life and perhaps reduce some of the symptoms.

He died after two surgeries meant to straighten his spine, relieve his organs from being crushed, and give him a more horizontal line of sight. He’d been looking straight down at the ground for decades, unable to see in front of him unless he pivoted his body backwards with one foot pushed toe-first into the ground.

I learned I had AS in 2013 after a period of sudden, un-treatable illnesses that left me in pain and unable to breathe. Urgent Care doctors blamed my frequent visits on panic attacks and attempted to send me on my way with anxiety medication, but I knew my body better than that. Continue reading An Open Letter to Congress from a Poor, Disabled American →

Advocacy, ankylosing spondylitis, Arthritis, Charis, chronic disease, Current Events, disability, Health Insurance, Healthcare, Medi-Cal, Medicaid, Patient Advocacy, sickness, spondyloarthritis

The Dangers of Funding Medicaid with Block Grants; a Patient’s Perspective

February 21, 2017 BeingCharis 2 Comments

When the Patient Protection and Affordable Care Act (AKA Obamacare) was written, the plan was for Medicaid expansion to provide health insurance for people who made too little to qualify for a subsidy to purchase a plan, but too much to qualify for Medicaid under the rules of the past. The goal was to create a system in which no one would fall into a so-called “coverage gap,” and poor people would have access to care regardless of their income.

It worked – for states that adopted the expansion.

A little-known hiccup (ok, heart attack) is that the Supreme Court declared Medicaid expansion optional for states, rather than mandatory. As of January 2017, 32 states have opted in to the expansion (including DC) and 19 states have not. In states that have not opted to expand Medicaid (because of politics) the coverage gap has caused many people to be unable to access affordable insurance or care. This New York Times Magazine article explores the struggles of some of these people: Life in Obamacare’s Dead Zone. However, in states that have opted into the expansion healthcare premiums have risen less sharply and more people are insured.

Case in point: me. I live with a debilitating disease called Ankylosing Spondylitis. I need specialized treatments and medications to slow its progression and prolong my life. Because I’m disabled and cannot work, I am poor, so I am one of over 14 million Californians and over 74 million Americans who receive Medicaid. It is my only option for healthcare. Continue reading The Dangers of Funding Medicaid with Block Grants; a Patient’s Perspective →

#sickbody, Advocacy, Charis, chronic disease, chronic pain, disability, Patient Advocacy

14 Ways To Become a Chronic Disease Advocate

February 6, 2017 BeingCharis 23 Comments

There is not a one-size-fits-all way to become a chronic disease advocate or activist. Everyone’s journey will be shaped by personal experiences, interests, time and ability.

I’ve gathered these tips from my own journey, but by no means is this an exhaustive list and I don’t recommend attempting them all at once. Also, while directed at people who have chronic diseases, these tips can apply to partners, caregivers, friends and family who want to become allied advocates.

As long as the end goal is to raise awareness publicly for the sake of social or political change, there is no inherently wrong way to create an advocacy platform.

1) Get comfortable telling your own story. Come out as sick. Introduce your disease to friends, family, and peers in a manner that also outlines your clear desire for them to listen – you may even need to say, “This is my story and unless you have lived it, I expect you to really hear me.” No one can tell your story for you and owning your experience can be empowering. Also consider that there are hundreds, thousands, or millions more people experiencing the same things you are.