Last Monday was my brother's 53rd birthday. It's been a rough few months, medically and behaviorally-speaking. But he has started to feel better and I had grandiose plans for celebrating his big day.
We'd start with singing "Happy Birthday to You," ending with a high five, while someone on his staff got video of it for me to post on social media. I'd have that big wrapped box filled with gifts of clothing that he'd immediately want to try on and model for me while I snapped some pictures. And we'd go out to a local cafe for breakfast and a chai latte, and then head to the mall so he could select his own new backpack (he LOVES backpacks!).
Well, my dream birthday celebration for Joaquin never happened.
For starters, Joaquin wasn't in a singing mood. He wasn't dressed either. He was literally wearing his "birthday suit" while pacing throughout his home. He did take some pleasure in unwrapping his gift. He smiled and laughed while taking out the clothes, and tearing the tags off of them so he could throw them into the trash (he loves throwing things in the trash). But he left the clothes on the floor, and continued to pace, naked. So...the video and photos...obviously, never happened. And the treats at our quaint little cafe...also never happened. And I'm still waiting for the perfect day to go shopping with him for his backpack.
Was I disappointed? Yes. But is that the point? No.
My point is that I, his ever-devoted sister, had made beautiful plans for him to celebrate his birthday. My expectations were high. The pressure was on. And my acceptance and appreciation for his experience, and his journey, and his needs, were not.
Joaquin spent the entire day in his birthday suit, in his home, mostly in bed, safe from stressors (well, except for one neurotic sister), and free to be himself, which is all my family and I have ever truly wanted for him. He did exactly as he needed to do that day.
And I am also reminded that once upon a time, Joaquin spent 15 years of his life in a state hospital, devoid of human dignity. We fought in court for 3 years to bring him home and co-create a life of quality, and of self-determination. So the fact that he spent his 53rd birthday in his own home, doing what he wanted to do, although it felt like mere survival to me, and although it was disappointing for me, it was actually nothing short of a miracle.
So why am I sharing this?
As educators and families, we often forget the end goal of everything we work so hard at each day. The ultimate goal for our students is life quality. And life quality includes many things such as access to good health, education, meaningful employment, meaningful communication, and choice and control over one's own life. Self-determination is what we all want for ourselves, and for our loved ones, and yes, for our students.
I know that within our educational communities, educators must have strong classroom management skills. However, we also must master flexibility and creativity when supporting students with varying journeys, abilities, and needs.
I'm not promoting nudity in schools (just to be clear!). I only use Joaquin's birthday story as an example of how our own well-intentioned goals can create stress for our students, and for ourselves, and often miss the mark when it comes to the purpose of education.
At the end of the day, what matters most is always the relationship created or maintained with your students. Sometimes this means not getting to check everything off the list of lessons, or maybe not even completing one lesson well. Those perfect lesson plans may never even see the light of day sometimes.
But let's shift our focus to what did happen.
Did you model an inclusive mindset? Did your students witness you preserve the dignity of a student having a particularly difficult day? Did you nurture an understanding that we all have difficult days, and it's okay? Did you all survive with a semblance of hope for a new day to come with new possibilities for deeper learning? Did you possibly help to create a better future for the student having a rough day? Did you build trust and relationship with your students? Did you build community within your four classroom walls? Were you a disability justice ally? Did you potentially spark a miracle?
If you did any of these, I'd say, you're one badass educator. You've got this whole inclusion thing. Give yourself a high five and grab a chai latte.
Note: Joaquin has given me his consent to share our journey publicly. He has been present and participatory during many of my speaking engagements, and has actively helped me in the creation of content. He appreciates knowing that his and our story is helping others. I share feedback and responses with him.
Diana@GoBeyondAwareness.com
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Do you have a burning desire to have a more equitable and inclusive school culture?
Are you a person who understands the importance of DEI (Diversity Equity & Inclusion) work in schools, but when it comes to disability, you want to make sure you know what you’re talking about?
Maybe you’re a special education teacher, or a general education teacher, or an administrator, and you may know a lot about disabilities, but not necessarily about the experience of being disabled by society. You’re interested in disability awareness that will actually make a difference, but you feel stuck, and you just don't have a lot of time to figure it all out.
If this is you, then I invite you to take advantage of my free resource called “The 5 Keys to Going Beyond Awareness.” All you have to do is go to GoBeyondAwareness.com/keys and I’ll send you my important tips for starting your journey toward a more inclusive school.
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For more resources related to education and disability awareness, listen to my podcast: Beyond Awareness: Disability Awareness That Matters!
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