At Brigham Young University-Idaho, a student named Cesar Ibanez is working toward a degree in biology with the aim of becoming a biophysicist. Ibanez has a genetic disease, spinal muscular atrophy, that prevents him from having any control of his legs, and limited control of other muscles. He requires assistance with, well, just about everything – dressing, showering, even getting out of bed. His drive to get an education in spite of the obstacles he faces is admirable.
But Cesar’s future prospects aren’t what I want to talk about.
Ibanez moved into an assisted-living home for his first semester and the university agreed to temporarily bus him to class until he could find an apartment close to campus. He wasn’t able to find one, so when his housing contract was up, six of his friends stepped up to help, insisting that he move in with them.
There are so many great nuggets in the story – go read it here.
In the comments below the story, one individual wrote, “It’s awesome what these guys are doing, but BYU should be embarrassed not to be backing up their commitment with a greater level of support.” As a mom who has sat through at least a couple dozen IFSP/IEP/504 meetings in my life (so far), it’s natural to want to look to the school and ask them why they aren’t doing more to accommodate Cesar.
But maybe it’s better that they haven’t.
Which scenario would you prefer if you were Cesar – living with six friends who assist him with the most personal of tasks and look out for his well-being because they love him, even though he has to drive his wheelchair four blocks to campus, or living in an assisted living and taking a university-provided bus?
I would like to see businesses, individuals, schools, government buildings (pretty much everyone) freely accommodate those with disabilities to the best of their ability. But more than that, I would like to see people with disabilities integrated fully into their communities, not through rules and regs and threats of lawsuits and public shaming, but through the loving efforts of the people who know and love them.
The future of inclusion isn’t about ramps and buses. It’s about friendship and kindness.
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Cesar’s friends are currently trying to raise enough money to acquire a van adapted for his wheelchair. Learn more or donate to their cause here.
Love love love love love this. As a college student with CP, I face a lot of disability-related challenges on campus too — not nearly as many as Cesar, to be sure, but sometimes it’s hard. The disability office offered me lots of accommodations, but I opted out of many of them. As an example, my campus is small, so I decided to walk to my classes instead of being driven there. I have many reasons as to why I chose not to take them up on many of their offers, but my friends are a major factor; they’re willing to adjust their pace for me so we can walk to class together and catch up on life. My friends do an amazing job of offering me help when I need it but at the same time, not making a big deal out of my disability. I’ll be honest: I was scared out of my mind to go to college and be away from my family…I wasn’t sure if I could do it, wasn’t sure if I could handle the physical challenges that I would face. Sure, many of my concerns were real and it hasn’t exactly been easy, but I love college and I feel as though my independence has really blossomed here, largely because of my friends.
Anyway, I guess I just want to say that I really appreciate the point that you’ve made here, Andi. Rules and regulations are important to some extent, but ultimately inclusion should be about true friendship and understanding. That last line of your post really resonated with me! Thank you!
What a great perspective! Of course, in an ideal world, Cesar would receive support both from his friends AND the university, and would be able to choose the circumstances that work best for him.
Awww… I love this story. When I was a child and I first encountered children with physical or learning disabilities in school, I remember thinking (and conveying to my parents) that I thought it was sad or unfair. Probably based on basic lessons I had learned in Sunday school, I also asked my parents why God would create people with disabilities. My parents told me that God places people with disabilities among us to teach all of us how to be more loving, accepting, and compassionate. I found that to be a pretty satisfying answer, at least as a child, and it has always stuck with me. And if it is true, God could not have placed Sarah Kate and Nathan with a better mother who is gifted in communication and helps us all along the path to understanding the importance of loving and caring for those around us.
Here via Love that Max. While I agree that in an ideal world, people with disabilities would be included because they’re valued, I have to say that I personally prefer people caring for me who get paid for it than people who might do it out of pity framed as friendship. I could maybe technically live with my husband if we decided to live on my disability benefits only, and have him take care of me fulltime, but I don’t want to see someone who chose to love me as my carer. There’s a chance the amount of care I need, would ruin my marriage, and then what? It is my belief that people who for whatever reason don’t have friends (I myself only have my husband) are provided with at least basic support and care.
I see where you’re coming from, but I think you set up a false choice in your comment. You said you’d rather have someone care for you who is getting paid than some who is doing out of “pity framed as friendship” (and I agree with you on that choice) but what if it were a choice between a paid caregiver and someone who truly wanted to do it out of love for you? I think there’s a big difference between the first scenario and the second. Certainly what you do in your personal relationships – the decisions and choices you make – are yours, but I have a friend with a spouse who is disabled who might disagree with you. Her husband was paralyzed several years ago and if they’ve ever considered living apart, I’d be shocked. Their lives aren’t what they expected, to be sure, and they have challenges I can’t begin to comprehend, but from my (admittedly outsider) view, they’ve thrived in their personal relationship.
There’s a lot to like about this story, but I interpret parts of it differently. Like Astrid, as someone with a disability, I prefer my most intimate physical “care” needs to be handled by people I choose and pay.
That said, in a college situation, I think this arrangement is pretty great. When I was in college, I quite surprisingly ended up joining a fraternity (that had men and women btw), and lived in it’s house for three years. It was similar to dorm life, but more family-like. I had help from my housemates if I needed it, and at that time, that was totally okay with me (and them).
The only other puzzle to me is why BYU couldn’t provide a wheelchair accessible dorm or dorm suite? That’s a proper responsibility of a university. Providing personal care really isn’t. That should be up to the student to arrange, however he or she can.
Just my two or three cents!