Disability Advocacy Articles

Threats to Cut Government Programs Impact Americans with Spinal Cord Injury

Accessing the services and resources we need to live quality lives can be a challenge for those of us living with spinal cord injuries (SCI). Almost 30% of Americans with SCI depend on Medicaid and thousands more rely on the Administration for Community Living (ACL) which provides services to people with disabilities regardless of insurance status. Recent threats to these programs have Americans with spinal cord injuries worried about losing these critical services.

DEIA: Diversity, Equity, Inclusion and Accessibility at Work

Today’s workforce expects public sector employers to be inclusive. For people with disabilities, like spinal cord injuries (SCI), this is good news. Those who work for federal government employers are protected by a 2021 executive order known as DEIA, or diversity, equity, inclusion, and accessibility. This legislation mandates employers to consider diversity when hiring, equity with opportunities for advancement, and inclusion and accessibility on the job.

Diversity, equity, inclusion, and acc

Documenting NuMotion's Poor Service

More than 250,000 people with spinal cord injuries or other disabilities that require mobility devices, such as wheelchairs, depend on one company for those devices: NuMotion. Unfortunately that provider is failing us.

With 170 locations, people requiring these services shouldn’t have to suffer through significant wait times for wheelchair orders and equipment repairs, but this standard of service has become much too common. Orders are lost in translation and technicians unprepared.

Customers

The Nightmare of Institutionalization

Like so much in this dystopia, care is about money. And disability is most certainly expensive. The durable medical equipment, medication, personal care, transportation, home modifications—the shopping list goes on. And everything tagged “accessible” is marked way up. Until I became disabled myself, I didn’t understand the extent to which ableism permeates people’s lives, including our wallets.

These aren’t expenses that the average individual

Avoiding Ableist Language

Words can have significant power. Their capacity to cause pain cannot be diminished by quotes about sticks and stones holding the only real threat to well-being. Certain words and labels can even be triggers of trauma for a person with a disability such as a spinal cord injury.

Terms that have seen their day and need to be shelved such as “wheelchair-bound, handicapped, crippled, lame” are still widely used in our society regardless of advocate efforts to filter them out.

Slurs are still often

When Airlines Damage Wheelchairs

When you live with a mobility disability, your mobility aids become an extension of yourself. You’re dependent on them. Their maintenance and timely repair means your quality of life. Participating in life feels like taking a risk, when accessing services out in society jeopardizes that mobility equipment. If you’ve ever flown on an airplane as a wheelchair user, you may have experienced property damage firsthand.

Know Your Rights: Accessibility Equity in Healthcare Facilities

Accessibility for people with mobility disabilities like spinal cord injury (SCI) has improved over the decades since the Americans with Disabilities Act (ADA) was passed in 1990. But while businesses that serve the public readily comply with ADA regulations regarding provision of ramps for wheelchair access, that’s often where accommodations end – even in a medical facility.

Why the Hospital Should Not Let You Get a Pressure Ulcer After Spinal Cord Injury

When you survive a spinal cord injury your first stop is the hospital setting. Here physicians will maintain your stability before sending you on to rehab. You’ll work with respiratory therapists, neurologists and other specialists to stabilize your condition. You will be doing all of this lying in bed. Because of this many people with spinal cord injuries develop pressure ulcers from lying in bed in acute settings.

Mental Health Pieces

Joy After Spinal Cord Injury

The thing about chasing happiness is that you’re on a treadmill. Even if you do eventually reach that goal, your mind will tell you it’s not enough and you’re off and running again.

Maybe a treadmill is a confusing analogy considering I’m stuck in this wheelchair, but it’s a cycle nonetheless.

Happiness is seen as the measure and the goal of a good life. We think we’re supposed to be happy.

We imagine something is wrong with us because we aren’t happy. Everyone thinks they must have depressio

Coping with Depression as a Quad (Using Buddhist Thought)

I’ve been depressed since I was a teen and anxious for as long as I can remember and to this day I’ve never sought professional help for it, so maybe I’m not the best person to be giving advice.

I have, however, learned some ways to deal with these emotions/states of mind pretty effectively. Before I explain, I’d like to say I think seeing a therapist is great and people can really benefit from it. I don’t think psychiatric drugs are great because of the side effects, but I acknowledge they ar

Spinal Cord Injury Articles

One Stop Shop: The Nonprofit All Individuals with SCI Need

Any one of us whom has sustained a spinal cord injury (SCI) can likely look back and remember the incredible struggle of the early days. Picking up the pieces of life after paralysis feels impossible; you don’t even know what resources you need, much less how to access them. The staff at SPINALpedia have been in that position too. Now they are committed to helping newly injured individuals get all the help they need as soon as possible after SCI.

The High Cost of Living with Spinal Cord Injury

Living with spinal cord injury is expensive. Whether or not health insurance picks up some of the medical tab, many Americans with SCI find themselves paying out of pocket for numerous goods and services necessary for quality of life: home modifications, accessible transportation, supplies, and homecare not covered by insurance. The average yearly health care and living expenses vary according to the severity of the injury, but all SCI survivors can expect a hit to the pocketbook.

You’ve Heard of Neuralink, But Do You Know About Synchron?

Neuralink and its Telepathy device has captured public interest around brain-computer interfacing (BCI) technology for people with disabilities impacting motor function, like spinal cord injuries. Maybe not widely known though, is other companies in the space are actually further into the clinical journey. New York based Synchron has reported promising results on their own clinical trials for their BCI, Sentrode.

Adaptive Sports for Power Chair Users

For many people who sustain a spinal cord injury, it’s important to get involved in recreation again. While sports like wheelchair basketball and wheelchair rugby are pretty widely known, power wheelchair users have historically been afforded less opportunities to participate in team sports. But now even individuals with high level cervical injuries can participate in multiple sports developed over the last several years, from power soccer to adaptive tennis and golf.

Can You Lose Parental Rights After a Spinal Cord Injury?

When you sustain a spinal cord injury, depending on its level and severity, loss of motor function can significantly limit physical activities. When you experience injury causing disability as a parent, these limitations extend to parental tasks and duties that pose challenges post paralysis. Despite limitations, and society’s assumptions about them, thousands of parents with disabilities make it work.

Sports and Spinal Cord Injury: The Statistics

Recreational sports of all types pose risks to children and adults alike who engage in them. Spine injuries comprise approximately 15% of all sports injuries. Sports injuries aren’t always a result of contact sports. In 2022, the sports category that caused the most injuries was exercise equipment. Sports activities frequently associated with injuries are exercise, cycling and basketball and among kids, football, girl’s soccer and boy’s wrestling.

Spinal Cord Injury Awareness Month: Paralysis Prevention

September is Spinal Cord Injury Awareness Month and that’s important both because the issues with accommodations and accessibility which we face need to be brought to the table, and because most spinal cord injuries (SCI) can be prevented. Awareness of the staggering statistics (18,000 new injuries per year in the US alone) and the risky behaviors that can result in these catastrophic injuries, may actually serve to prevent some of them.

Treating Bladder Dysfunction in Spinal Cord Injury

When you sustain a spinal cord injury, the disruption of the body’s signals to the brain effects more than sensory and motor function. Most people with SCI will experience neurogenic bladder dysfunction. That just means the damage to the nervous system causes the bladder difficulty draining properly. The bladder may retain or leak urine instead. The level of SCI determines bladder dysfunction. Depending on your symptoms, there may be surgical procedures to help manage the neurogenic bladder. Peo...

Spinal Cord Injury: The Numbers

Spinal cord injury affects millions of Americans and their families. For many of us, the disability affects every aspect of our lives. Out of the more than five million Americans living with paralysis, one in four are survivors of a spinal cord injury or disease. How many spinal cord injuries are survived each year? Who do they affect and why do they occur? Which injuries are more common? What are the odds of recovery and rehabilitation?

Hands-Free Hobbies for Spinal Cord Injury Survivors

With my complete C3 quadriplegia diagnosis, at first I imagined myself sitting in a power wheelchair gazing at the wall for the rest of my life, or out the window, had I been placed near one. I really couldn’t muster motivation to live just to sit through life, hands immobile on my armrests.
Fortunately, that fantasy was far from the truth. Eight years now, and I can’t remember the last time I was bored enough to stare listlessly into space, remembering life instead of living it.

Neuralink Update After First Human Trial

In 2016, billionaire inventor Elon Musk launched Neuralink, an ambitious project determined to use brain computer interface (BCI) technology to ultimately restore motor function in people with paralysis. BCI technology isn’t new, nor limited to Musk’s trial. It’s also not advanced enough to restore function in humans. But the first human to trial a Neuralink brain chip has opened up about his unique experience controlling a PC mouse entirely by thinking about it.

Class Action: Identifying Issues Faced by the Spinal Cord Injury Community

A class action is a legal proceeding in which one or more plaintiffs bring a lawsuit on behalf of a larger group, known as the class.

People with disabilities are protected by the Americans with Disabilities Act. This legislation is in place to enforce accommodations, accessibility, and equity. Unfortunately, when businesses don’t comply, the responsibility of standing up for our rights falls on us.

This might look like fighting against a city that refuses to fix the sidewalks, suing a transpo
Load More

Subjective Content: Telling My Story

Religious Trauma, When Faith Hurts: Testimony of an EXvangelical

When people ask me why I have trauma from my youth in the Evangelical community, I really don’t know where to start.The megachurch Easter production I attended as a preteen, watching actor Jesus whipped bloody on his way to the cross? My eyes had nearly swollen shut from sobbing in the church van on the way home. A youth pastor had pressed a hammer into the hand of each child at an Evangelical camp I’d attended the summer prior, and my guilt and shame over the torture and death of Christ was pal...

From Institution to Independence

As I rolled my power wheelchair through the doorway to my first independent home in more than four years, a sea of emotions swept over me. Pride. I worked hard for this moment. I advocated for the home based services I needed in my community. I took on multiple part time remote jobs. I jumped through all the hoops to qualify for this low income accessible apartment. It wasn’t a nice house like I could have afforded a decade ago, as a tradeswoman. But it was my own space in this world.

Making Peace with My Spinal Cord Injury

Outside the window the summer sky is impossibly blue and oblivious to my plight on this bed. Sorrow pierces my heart, and a sob catches in my throat. The skilled nursing facility is alive with staff rushing about hustling residents into showers, pushing med carts, tending to droning call bells and haunting cries. The surgeon’s voice echoes in my mind every moment: words like “permanent” and “complete.”


Closing my eyes, I see myself on my feet, in my work boots and harness on the iron. Longing

Self-Worth, Shame & Spinal Cord Injury

I was raised with the example of a hard-working, blue-collar father, and I went into the trades at 21. As I welded my way up the West Coast, young daughter in tow, I adopted this perspective that over-working oneself to death was an admirable way to go. My self-worth felt determined by how much I was contributing and participating. This applied to both my then-career in commercial iron and my anticipated career as a writer.

I never imagined the former would be cut so brutally short. I sustained

When You Can't Hug: A Post-Disability Mother-Daughter Relationship

The kind of mother I was at 32 was a strong, single, independent, provider type. I was a tradeswoman. I had begun a career in structural steel at age 21, and it took me all up and down the West Coast.

My daughter got everything she wanted, except my time and patience.

We were emotionally estranged. I thought such was inevitable with the approach of adolescence, and I was more consumed with my own adventures, part-time partners, and destructive habits than I was with parenting and bonding.

The

A Tale of Two Assisted Living Homes

After six years of navigating complete C-4 quadriplegic life I found myself in need of moving into assisted living two years ago.

I didn’t do any research before moving into the first place with a vacancy. I was just glad they would accept me, with my high level of care. Many assisted living homes are basically retirement homes and many residents don’t need a lot of care.

I had been warned this place was ran by rather negligent management and sorely understaffed, but the contract said ‘24 hour

Discovering Self-Love and Accepting My Post-SCI Body

It is human nature to accept ourselves more readily when we see that other people accept us. I have experienced this need for validation since I was a new kid in elementary school. This need still eats at me, even when I appear to have it all together.

When society told me that I needed to be pretty, I listened. When the media told me I had to be thin, I ate less. When boys started noticing me, I thought that was what being a woman was all about.

I became an ironworker soon after I graduated f

A Quadriplegics Dreams of a Life of Passion and Purpose

“It was a straight downhill roll to the highway, and if I timed it right and gained enough speed, surely I could collide with a speeding semi-truck.”

Five years after the car accident that left me a C4 complete quadriplegic, I was losing my “why” to live and experiencing fleeting ideas about “how” to end my life.

A caregiver would have actually to show up and get me out of bed first. That was no easy feat; a primary source of my soul-sucking depression was directly associated with being stuck

Medicating with Marijuana

It’s just another day, but for me that means waking up in pain, anxious, and with my limp body flopping around the bed like a fish out of water. I take my morning medications; for me, this includes a few puffs off a slim, silver vape pen. Inhaling, I let it calm me.

I blow the sweet tasting cloud into the air. My stiff arms and legs reluctantly respond, becoming still and pliable enough for my paralyzed body to be dressed. My mind calms and the body follows.

Even though I just medicated with m

Reversed Roles Parenting with Disability

It’s Saturday morning and Haley, my 15-year-old daughter, comes to my room. We talk softly as she gives me my morning meds and empties my catheter bag. She brushes my hair and applies my makeup. As she dresses me we discuss school and her boyfriend. My brother, Efrim joins us and transfers me to my powerchair.

Haley is my only child and I am her only parent. She was 13 when I became paralyzed from the shoulders down as a passenger in a rollover car-accident. Before then, she travelled around th

360 Perspective: Moving On and Going Out

360 Perspective: Moving On and Going Out

On Mother’s Day, my best friend Heather and I returned to the street where we flipped her SUV exactly two years ago. I remember being suddenly incapable of moving and the medivac helicopter’s propellers chopping through the dark sky. I remember terror.

I crushed my C4 vertebrae, rendering me unable to move or feel my body from the shoulders down. Terrifying weeks in ICU and many more in a nursing home followed the neck surgery that had saved my life. I

Why I Write

While I enjoy crafting a sweet sentence, my passion for writing extends beyond the insatiable urge to see my words in print. I'm primarily concerned with advocating for the marginalized communities I belong to, such as those with spinal cord injury and disability, and individuals deconstructing from religious abuse. 

[S]he who has a "why" to live can bear almost any "how".

Nietzsche

How I Write

My "why" to write demanded I find a "how". While expensive accessible software exists I didn't want to wait for the funds. I still often use a mouth stylus to type, my wpm competitive as my technique improves.