1. In 2-3 sentences describe what makes your home feel like home to you?

2. what was the purpose of us sharing Joaquin’s story?

It’s vitally important to understand what made a difference in Joaquin’s life. If we look at Joaquin from the medical model of disability, we will notice that his disability was not cured. He is still autistic. He still has communication and movement differences. He still needs lots of behavioral and communication support. He still needs complete personal care support such as in bathing, cooking, cleaning, shopping, etc. Joaquin has not changed. He is the same person with unique needs.

So then…how did his life transform from institutionalization and a shameful quality of life to community living with a good quality of life? If Joaquin didn’t change, then what did?

Joaquin’s life could not be fixed by focusing on the medical model. His entire life was a medical model experiment, and trying to cure him did not work. It wasted time, trampled his sense of self-worth, and enabled society to not acknowledge its own responsibility in disabling Joaquin. It gave society a green light to just give up on him because his condition was just too severe. He was too damaged. Too difficult. So society was justified in giving up on him.

What changed the trajectory of his life was our understanding of who Joaquin was as a fellow human being, and what it was that he needed to live a good life. If we look at Joaquin’s story from the social model of disability, we will see that what we cured was not the autism. We cured the societal and structural ableism around him. We changed our mindset about what Joaquin was capable of doing given the right staff, communication support, accommodations, environment, dignity, and opportunities to heal from a tragic past. What changed was our commitment to Joaquin as a person of great worth. What changed was our dedication to the cause of life quality for “even him.” What changed was our relationship with him as we became trusting partners. What changed was our willingness to admit that we didn’t have all the answers, and we needed him to guide us. We began to honor him and truly listen to him instead of trying to change him.

Had Joaquin been fully included in elementary school, middle school, and high school; had he been taught how to communicate using alternative and augmentative communication devices; had he been able to form friendships with his nondisabled peers; had his mind been stimulated with the privilege of learning reading, writing, math, history, and science like his nondisabled peers did; had he been honored as a human being; although many would call it speculation, I am confident that Joaquin would never have been institutionalized. Instead of being disabled by society, he would have been empowered by society. Of course, he still would have been autistic, but his story would have had a much different ending. “Steak” would have been present all along.

As we continue in this course, and as you are introduced to other people sharing their stories, pay careful attention to how societal responses to their disability plays a role in both their struggles and their triumphs. Where there is poor life quality, note whether it is related to societal and structural ableism, environmental barriers, attitudinal barriers, lack of access or accommodations, segregation, and/or abuse. Note whether or not they were included and embraced growing up, and had a sense of belonging. And to take your observation further, consider whether or not intersectionality is part of their story as well. Are they part of another marginalized group in addition to being part of the disability community?

In instances where quality of life is good, pay attention to societal supports, accommodations, assistive technologies, environmental access, structural access in government and community, and overall inclusion and appreciation of diversity that exists in their lives. And again, consider intersectionality and whether or not they had an advantage over others based on other factors of their identity.

When we begin to understand our role in disabling others, we can begin to empower us all…no matter what.