I believe in using the transformational power of creativity to achieve social justice. Joseph Beuys once famously claimed that, “Each person is an artist.” In the words of the Spanish poet Antonio Machado, “Wanderer, your footprints are/ the path, and nothing else;/ wanderer, there is no path,/ the path is made by walking.” My work consists of public interactions that create new conditions in the community.
I have multiple sclerosis and that affects my life and work in many ways. I am the host of What’s The Matter With Me?, a podcast where I share my experiences, challenges and triumphs as a patient with MS. The podcast develops my Disability Consciousness and bridges me with my caregivers, doctors, the disabled community, and community-at-large.
If each person is an artist, and we create the road by walking, then it is up to us to create the world we want to see.
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CLICK FOR TRANSCRIPTDisabled voices are just like regular voices, just like anybody. Using our voice makes it stronger, and it’s doubly true for disabled people who’ve been disenfranchised, and hidden away, and censored.
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Compounded trauma is when things make us upset, because they remind us of traumatic situations that we’ve experienced before, causing us to relive them.
When I feel this way, naming the feelings I am having, and explicitly connecting them, can be a way to overcome them.
The thing is, my wife likes creepy stuff. I don’t like watching surgery. When the scalpels come out, I check out of the movie.
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We all need to put in effort to get ourselves out there, because it can be hard on your mental health to be so isolated. It’s important to be part of a community, and be involved, and have exchange with people.
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I’m working in the garden, while wearing my new AFO brace in this episode of the What’s The Matter With Me? Podcast.
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Two months into coronavirus self-isolation, I’m thinking about how this is an important time, one that we’ll remember forever and that our kids will also remember. In this episode of the What’s The Matter With Me? Podcast, I’m thinking about the importance of this time.
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The principle of non-discrimination seeks “to guarantee that human rights are exercised without discrimination of any kind based on race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status such as disability, age, marital and family status, sexual orientation and gender identity, health status, place of residence, economic and social situation”.
Committee on Economic, Social and Cultural Rights, General Comment No. 20, Non-discrimination in economic, social and cultural rights; 2009.
click for transcript(When too many patients are in urgent need at the same time), some are proposing to send the disabled to the back of the line. States across the country are looking to their Crisis Standards of Care plans — documents that explain how medical care changes amid the shortages of an unprecedented catastrophe. While each is different, many have a concerning common attribute: When there isn’t enough lifesaving care to go around, those who need more than others may be in trouble.
Ari Ne’eman, ‘I Will Not Apologize For My Needs,’ New York Times, March 23, 2020.
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Day 23 of self-isolation
click for transcriptI’m going to try practicing some acceptance to get through this terrible experience of confinement, which is worse than usual.
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coronavirus isolation has my mind stressing, the amygdala, anion mal brain underneath the hippocampus, the thinking part of my brain.
CLICK FOR TRANSCRIPTLooking around at the newspaper, it seems like there’s a lot of nutso animals on the prowl right now in our culture and around the world. And it’s a lot of stress. It creates this stress, it’s bad for MS, it’s bad for many things. Almost anything that’s wrong with you, you could do without some stress to deal with it, you know? So, people are not functioning in their highest level right now because of all the stress.
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I recorded this message on lockdown. I can’t go anywhere due to the coronavirus pandemic and my multiple sclerosis condition. I’m in my house with my family, trying to educate my kids and keep their development on track. We’re taking a crash course in distance learning, e-learning, online education, or whatever it’s called, sooner than any of us thought.
click for transcriptLOCKED DOWN in California. Using my wheelchair to get around the neighborhood. Spoke to the teacher in a Zoom conference. Distance learning, ready or not. In the virtual classroom. Online learning resources from the library. Immersed in the distance learning environment overnight. I may be related to teachers. Spanish lessons.
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The orthotist came up with a second brace concept, and I went back for a fitting that left me feeling a bit dejected.
click for transcriptShe took a video of me walking in the examination room. She showed it to me after. It was framed from the knee down. Looking at it made me feel really disabled. I felt ashamed of myself. I felt sorry for myself. it was kind of nauseating. I looked at myself as an object. I felt disgusted.
I apologized to her for walking so poorly. She was surprised. Raising an eyebrow, she told me I had nothing to apologize for.