Gratitude
I want to thank each of you reading this for being here and for doing your best to live in a good way. I thank the people who support each one of us in doing this good work. I thank our ancestors for the guidance, support, and wisdom they provide. And I thank Creator for the blessing of clean air, land, and water.
About Me
I am a light skin Black (African American, Syrian, and european) and Creole (Black, european, Roma, and Persian) Disabled zami femme. I’m also gender expansive, have a history of being very low income and houseless, and I have been passionate about systemic change since 2004. In undergrad, I studied and practiced community health education, HIV and sexual violence prevention, trans rights, and intersectionality before it was a buzzword. My degree is in Nonprofit Administration, particularly within the Arts.
I am an educator, space-holder, and access artist. As a facilitator, I reflect back the open presence of the community and use those reflections to keep my work grounded in the needs of those most targeted by oppressions. I have spent the past 18 years studying, practicing, and reflecting on social justice issues and doing liberation work. I am committed to undoing all forms of oppression and replacing them with true justice and caring respect. I enjoy lovingly curating Nonprofit Disability Justice projects, programs, and trainings. I am also an international Disabled social practice/multimedia artist who is passionate about healing intergenerational trauma through my work.
I live with Complex Regional Pain Syndrome in both legs and feet… one of the most painful conditions that exists according to the McGill pain scale. This pain has developed since my bilateral hip replacement surgery in 2014. About four months after my legs healed, I started getting “brain freeze” inside my thighs, which turned to a burning itch and then difficulty bearing weight. By 2016, I needed a wheelchair.
Another condition I live with is mast cell activation, where I have anaphylactic reactions to things I’m not technically “allergic” to–for example, sunlight and heat, particular fragrances, gluten, wine, cantaloupe, etc. I went to a hotel for a sweet night with my honey, and I ended up in critical condition in the emergency room while they tried to figure out how to reverse the reaction to a fragrance used in the hotel rooms. I almost died from a hotel room!
The last significant disability I will mention here is a traumatic brain injury–post-concussion syndrome–which has left me with significant word-finding difficulties, chronic daily headache, dizziness, irritability, and difficulty with concentration.
I also have a history of mental health diagnosis.
These experiences make it difficult to work, connect with and maintain friendships, and stay active. I work very little, but I enjoy the work I can do, and I do my best to be excellent. I push through the pain enough to stay connected, because that eases the experience of isolation that makes pain worse. I have caregivers who help me maintain my home and body care, and that allows me to have somewhat of an intellectual life.
I have so much awe and respect for those who are able to extend themselves grace, work toward an embodied life, and have patience and love for me.