Tag Archives: Disability

ankylosing spondylitis, Inspirational, spondyloarthritis

How a Pair of Heels Gave Me a Reason to Live with Ankylosing Spondylitis

18 Comments

Shortly after I was diagnosed with Ankylosing Spondylitis (AS) I decided to buy a pair of heels. I could count on one finger the number of times I’d successfully worn heels in the past: to that dance in college after a knee surgery, using my crutches to help me balance.

I grew up in rural North Carolina and heels did not help me climb trees, catch blue crabs, or sail a boat. I didn’t have a use for them. I didn’t know how to wear something that wasn’t running shoes or soccer cleats. I would only try on heels to make my friends laugh while I stumbled around like Jar Jar Binks.

It seems counter-intuitive that I would purchase a pair of heels right after being diagnosed with a disease that causes extreme joint pain, inflammation, and spinal damage. I should be preserving my body and my joints as much as possible, right?

But when I was diagnosed with AS something clicked inside me, and it wasn’t a desire to follow the Yellow Brick Road back home to Kansas. It was a sudden desire to experience everything life could offer before I couldn’t do it anymore. And that somehow meant learning how to walk in heels even if I was only able to use them for a year, 5 years, or 10 years. Even though it didn’t make any sense.

So I bought heels and kind of learned to walk in them.

And then I became a fashion model. I swear it wasn’t planned. During my first photo shoot the photographer had to teach me how to pose gracefully without falling over. Continue reading How a Pair of Heels Gave Me a Reason to Live with Ankylosing Spondylitis →

Advocacy, disability

I Told My Story at the 2018 Women’s March in Sacramento

6 Comments

Below is a video and transcript of the speech I gave at the 2018 Women’s March in Sacramento. The current video may be updated with an official rally video after it is released.

(Video courtesy of Darcy Totten, Activism Articulated)

Sacramento!!!

My name is Charis.

Five years ago I was asked to testify on a bill and I said to the person, “I am nobody, how can you expect me to say anything to convince these lawmakers to choose the right thing?”

She said, “Charis, all you have to do is share your story. Nobody can tell your story for you.”

Sacramento! Can you share your stories? That’s all you have to do.

I’m a former college athlete. I graduated magna cum laude from a women’s college and I paid off my college loans in 6 years. I could do anything!

But.

Then I was diagnosed with Ankylosing Spondylitis. You can’t tell because I’m hiding the pain, but Ankylosing Spondylitis hurts like hell and my body’s working overtime just to survive. I also live with Post Traumatic Stress Disorder, Depression, and Anxiety.

In 2016, I made the hardest decision of my life. I applied for Social Security Disability. Now, two years later, I am still waiting for a decision on my case. For two years I’ve been surviving on savings and occasional financial help. But with Sacramento’s rent rising astronomically and my savings and health in decline, my future is uncertain at best. Continue reading I Told My Story at the 2018 Women’s March in Sacramento →

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

Being Disabled Is a Job

29 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, Charis, chronic disease, chronic pain, disability, Invisible disease, open letter, Patient Advocacy, sickness

Dear Gate Agents and Flight Attendants, From People Who Don’t Look Disabled

2 Comments

Dear gate agents,

I’m one of those passengers who shouldn’t be in the pre-board line.

You know the ones.

I’m dressed nicely and I have makeup on; I appear healthy and able-bodied. I don’t use a wheelchair. I’m young. I sometimes sit on the floor and stretch. Aside from my pillow and sometimes my cane and wrist braces, there is not much evidence pointing to a broken body. According to popular opinion, I don’t look disabled.

You want to do your job well, and part of that is accommodating people with disabilities. But often, when I request a pre-board pass, you look at me like maybe I’m cheating, like maybe I learned a trick somewhere just to get a better seat or not wait in line. Maybe you think I’m smug or even entitled. Sometimes you question if I need the pre-board pass on the basis of disability right after you sweetly, wordlessly hand one to the woman in front of me Continue reading Dear Gate Agents and Flight Attendants, From People Who Don’t Look Disabled →