University, independence, roommates, and disability

Cesar Ibanez, 28, has spinal muscular atrophy, a genetic condition that leaves his muscles weak.  The medical community didn’t expect Cesar to live to adulthood but he did.  Now he’s attending university and pursuing a degree in biology.  He hopes to advance research and opportunities for people affected with spinal muscular atrophy.

Six close friends convinced him to move in with them as a fellow roommate. For most people that’s normal enough but Cesar requires support.  The friends, despite having no experience as support workers, have taken over as unpaid help for all that Cesar requires.

The roommates admit that it was an adjustment at first taking on the role of full-time supports without pay in combination with their studies.  The group worried if they would be up to the challenge.  So far the experiment has been a resounding success.

Cesar’s story made me think about my early independence; more so since I helped my first roommate and oldest friend move into an apartment in my building.  We’re both older and wiser and my Mum was right about pretty much everything.  Ah, hindsight!

I had a lot of firsts in my first year living in my own apartment.  That first crazy university party, my first experience with plumbing gone wrong, my first grocery shop where I bought all the junk food my Mum never did.

I’m grateful for that time in my life.  Those first couple of years on my own were tough but taught me so much about what I wanted.  It changed who I was.  I got to explore and learn a lot of different perspectives, test drive theories for how I wanted to live life, etc.

Stories like Cesar’s highlight that this isn’t the norm yet in our culture for people who require supports.  What would your life have been like if you’d never moved out?  Would you have explored the same opportunities?  Tried the same music, food, or travel?  I know I wouldn’t have.

Cesar’s friends are showing what happens when we break down barriers and truly include people.   It embodies the spirit of pursuing a higher education; pushing boundaries, learning, and expanding horizons.

Someday Cesar’s experience won’t be newsworthy.  It will be what all people with disabilities can expect from going to university; a chance to be independent, live with friends, and find out who they want to be as a professional and an adult.