Tag Archives: Disability

ankylosing spondylitis

What Does Ankylosing Spondylitis Feel Like? Try This Written Simulation.

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Pro-tip: if you have the opportunity, ask a friend to read this to you while you close your eyes so you can really imagine it.

Hey Spondy,

There’s a thick rigid belt around your hips & a dull pitchfork attached to the inside being pushed firmly against your lower back, forcing your stomach to curve perpetually forward in effort to escape the uncomfortable pressure.

A steel wire strung between your sacroiliac joints (the back of your hips) – drilled into the joints with hot barbed-wire screws – is being slowly tightened across your back, pushing that pitchfork deeper into the base of your spine. It’s progressively aggravating a deep, aching, stabbing pain at the core of your being.

Your body is pulsing with a desire for relief. Anything.

There’s a rope attached to the outside of both hips. It’s being pulled backward, forcing your hips to open slightly outward and making your lower back fold in on itself even more. It’s unnatural, limiting your ability to move your legs. You shuffle step to fight against the simultaneous pushing and pulling from behind. Your hips are fighting to function, but they can really only move a fraction of an inch with each step with this pain and stiffness, so you swing your legs forward to walk. Forward movement is the only option to escape the pressure of the pitchfork, even as you are being pulled from behind.

Large, flat weights are hanging from the front of the belt around your hips, rubbing and rigidly pushing against your thighs, restricting range of motion and weighing down your legs. You can barely lift your legs to push them forward to take a step.

Walking is so hard. Every step hurts more. It’s jarring. Your hips don’t propel you forward, your back doesn’t pull its own weight, your legs are sacks of sand, and you can only manage with an uneven shuffle push-pull of your legs into position. It feels like your spine is settling, crushing in on itself as you jostle it into sediment or quicksand. Or, as Mick Mars puts it, “quick-drying cement growing on the inside of your spine.“ Continue reading What Does Ankylosing Spondylitis Feel Like? Try This Written Simulation. →

disability, poverty

I’m Impoverished & Disabled. I’m About to Be a Homeowner in California.

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I moved to Sacramento in 2011 because it was one of the most affordable big cities in California. The cost of living was fairly similar to Raleigh, NC at the time (where I lived before moving to California). In recent years Sacramento has faced one of the fastest climbing housing booms in the nation as a result of Bay Area residents moving in. Rent has climbed at astronomical rates, and so has the price of homes. Low-income and affordable housing has not been a priority to the city and region, and homelessness has grown as a result.

In 2013 I was diagnosed with the same disease that killed my father, Ankylosing Spondylitis (AS). My health deteriorated and I became disabled and impoverished as a result of not being able to work.

Ten days ago, on January 23rd, 2019, when I woke up I didn’t know I would be writing an offer on a house that night. I didn’t think it was even possible.

But when I saw a listing pop up in the MLS search that evening for a house I could afford, I told my real estate agent (who also has AS), “I want a house more than anything. I want to move on this.”

Continue reading I’m Impoverished & Disabled. I’m About to Be a Homeowner in California. →

disability, Women's Rights

Women’s March: Make Universal Accessibility a Cornerstone

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Millions, possibly billions, of people were devastated on election night in 2016.

I was one of them. I feared for my life.

I graduated Magna Cum Laude in 2009 with a bachelor’s degree, but I now try to survive on under $1,000 per month on Social Security Disability (SSDI) because of a disease I was born with. As a result of this incurable disease’s progression, I am fully disabled and impoverished. I am a living, breathing, pre-existing condition.

After the election sunk in, I desperately sought hope. I clung to the gleam of The Women’s March, craving for throngs of women to somehow save me from this new hell. I had dreams of attending the 2017 march in D.C. but wasn’t sure how I’d survive it. My inflammatory disease, Ankylosing Spondylitis, causes debilitating pain and fatigue if I exert too much energy or stand longer than a few minutes. I would have to rely on my cane, pain medications, and a slim chance of places to sit and rest during a march where I wouldn’t know many people. In the end I settled for attending my local march in Sacramento, CA.

I borrowed a huge, clunky wheelchair from my church and asked friends to push me in it. I noticed people’s kindness – those who made room when I asked for it – and I called it accessibility, when in reality the march’s overarching inaccessibility made it such that I had to rely on the kindness of strangers in order to participate (I remain grateful for the kindness). I had to do what many with disabilities must do in order to survive: ask for help; rely on others; and say, ‘Thank you,’ for not being trampled.

If I could make it to the front, I was told, there was an area for people with disabilities, but I learned of it a hundred yards away – and about two thousand ambulatory people swarmed in a pink pussy-hatted mass between it and me. So, I settled for less and pretended it was sort of OK that my primary view was of people’s butts and shoulder bags. Continue reading Women’s March: Make Universal Accessibility a Cornerstone →

ableism, disability

I Survived Sexism. Ableism Took Its Place.

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In high school, I fought to be the best at every boot-camp exercise our ex-Navy coach put us through during soccer practice. One day I laid flat on my back for nearly 15 minutes lifting my feet six inches off the ground because the coach said whoever kept their feet up longest could get water.

I won. I got water. I couldn’t walk the next day.

I heard my teammates describe what they did to (not with) their girlfriends as a matter of pride. I learned how to change into my uniform on the bus for away games without a sliver of upper thigh or chest showing.

I sometimes stuffed a sock in my shorts, I ran faster and hit harder, and I got angry that the referees refused to call fouls on me. The one time my coach smacked my butt after a good play, “Alright, Hill!” – it surprised us both; he’d forgotten I was a girl for an instant.

I was permitted to play on the boys’ soccer team, thanks to Title IX, because we didn’t have a girls’ team.

My teammates got by fine just being mediocre. I had to be twice as good just to be seen as OK. Continue reading I Survived Sexism. Ableism Took Its Place. →