How wide is the sky?

Photo by Cody King on

Where is your personal horizon line?

In Girl Meets World, a Disney television show that explored the life of Riley Matthews, her best friend Maya and their close group of mutual friends as they navigate middle school and their first year of high school together, Riley’s father Cory is her history teacher. In one episode, he asks his students to write down the one thing they think is most impossible for them personally. The students do, and then he says, “Crumple them up. You hold your world in your hands.” This sticks with me.

I had wanted to launch the Disability Intersection for a long time and doing so thrills me. It has been my vision, dream and motivating factor through the end of my undergraduate social work student days, through a gap of years before applying to grad school to needing to leave grad school for nearly five and a half years due to Postural Orthostatic Tachycardia Syndrome I contracted after MRSA . That happened between applying and being accepted to graduate school the first time.

Upon realizing I would lose my ability to reapply if I didn’t do so right away, I remember calling my school from an emergency room to start the process of reapplying, being told they would still honor my Advanced Standing Status (an absolute miracle!) getting in and restarting. Then I to drop out for another year to recover right after classes were over, going back for two years after that and having my mother die of pancreatic cancer a week before I graduated. Then having our house sold, moving twice and navigating a completely new supported living services attendant care setup I did not choose except in the sense that it was an alternative to assisted living and I was afraid. I still have this.

Through it all, faces of people I don’t know yet who would be/will be touched by The Disability Intersection have kept me going. Children. Adults. Seniors. Families, both chosen and otherwise. Organizations. Policymakers. People hungry to be seen, celebrated, heard. My mother believed in The Disability Intersection and we often talked and dreamed about it. I have felt for the nearly three years since she died that it died with her because there was suddenly so much focus on what I couldn’t do around me and in my self concept. That was the place at which I nearly fell off of my personal earth and the end of my personal horizon line.

But I’m strong. I try to be as honest as I can, and as committed. I believe my mother, Elaine, is proud.

I worry now, coming on the disability rights scene again like this, (a scene I had to leave for years because of dysautonomia) that I am too much an activist, not activisty enough, too white, too developmentally disabled, too liberal, too conservative, too fill in the blank for all of you to feel safe, supported and heard. These are things I would not say to anyone else so I’m just trying to do the best I can to honor both the disabled community and those without disabilities who are close to us.

I grew up with seniors around me as next door neighbors on both sides of my house. As a kid, I spent hours with them and when I was twenty I moved to a combination senior and disabled resident complex. There, we helped each other, visited with each other and knew each other. Both of these things taught me the power of community.

As a macro, community organizing minded social worker (this is really worth looking up if you need more information on community organizing as part of social work; right now the Disability Intersection is still small and I’m a bit tired,folks,) I don’t have the same focus as a clinical one. There is less distance between my personal and professional life because I chose to specialize in disability concerns. I know them. I feel them. I honor them. I saw a gap, and I became a macro social worker because I care about the big problems we all face on a big scale. I see them as connected, and all of us connected as people, too.

I watch people and society struggle with default responses to disability that hurt both those of us with disabilities and those without.

I can barely stand it, so I want to help change it.

I’m not the only voice, nor do I want to be. I am not trying to dismiss or take away from any other voice active in the disability community or any of our intersectional communities (which is pretty much every single one because we are so awesome….Disabled People….Everywhere you want to be. It’s like that Visa Commercial)

Thank you for coming here. We really do hold our personal worlds in our hands. I’m not saying it’s all sunshine or that oppression and struggle doesn’t exist. I’m saying all of us have some choice and power. What does your world look like right now? How can it be less crumpled? There’s room for all of us and each of us. Let’s celebrate, and build, the world we truly want.

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