From Institution to Independence

by Cassandra Brandt, a C4 quadriplegic and SPINALpedia’s Community Outreach Coordinator

Sleeping Beauty by Joe Brochamante

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.

In the living room my dog stretched lazily in a patch of sun on my new rug, and my brother had put up my pink velvet curtains. No more white walls and harsh lights. No longer would I be forced to endure the understaffed institutions I’d been stuck in so long for lack of better resources. My nights here would be quiet and peaceful. My caregivers would come in as needed.

The autonomy the transition afforded me couldn’t be overstated.

Gaining my independence

Rolling into the cozy kitchen, the smart lights installed just for me clicked on. Heading into the bathroom down the hall, another emotion hit me when I spotted the roll-in shower.

Gratitude. Accessible housing is incredibly difficult to find. And affordable too? Forget about it. Resources are often the most limited in little rural communities like my own. I’d been waitlisted for local HUD for years, and on the wait list for the two local income-based apartment complexes for what felt like forever too.

In the years since my injury I had paid rent at typical ridiculously high rates, resorted to uncomfortable roommate situations and to using family members to provide free care in order to afford rent, and ultimately been forced to move into skilled nursing facilities and assisted living homes.

After touring my new apartment I rolled outside to sit in the warm Spring sun. The view of my hometown’s Sleeping Beauty mountain range would be gorgeous from my patio as it sank behind them that evening.

It struck me that I could stay up and watch it, no longer living my life on someone else’s schedule but setting my own.

Everyone deserves independence

The next emotion that hit me was indignation, but not for my situation this time. I want to advocate for others in institutional settings, help them to transition to independent living.

The transition will be challenging but the reward may be incredible. I applied for government assistance to go back to school and got into a vocational rehab program. The program provided me with psychological, physical and occupational therapy, and assisted me with adaptive equipment to increase autonomy and finding funds to finance my move.

During my stay from time to time in the institutions I became acquainted with other younger people with disabilities stuck in those walls too. Their lives were very limited to that space and those schedules. The understaffing practices of these for profit institutions don’t allow for adequate time and care for anyone much less a high level quadriplegic like myself.

My institutionalization journey

While in the skilled nursing facility I missed important events because I had to be present at a particular time in order to get transferred into bed if I wanted to go to bed that night. This lack of autonomy over my schedule affected my education and employment efforts more than my lack of autonomy over my body.

I am a C4 complete quadriplegic and use voice tech and a mouth pen to type.

My level of injury and need for care have institutionalized me numerous times. Now at age 41, I’m winging it out in the world again, depending on caregiver agencies 80 miles away out of stark stubborn will to stay near my family.

As the sun began to sink that first evening it was as a magical as I had imagined it would be. Taking this independence for granted will never cross my mind. Maintaining it might be hard but giving up won’t cross it either.

In the meantime I will be blogging by night and advocating by day so that others stuck in these institutions will know they are not alone.

— Follow Cassandra’s independent living journey on IG here

Cassandra’s new front door

Cassandra on her patio

Her roll-in shower bathroom