My name is John,

I’m 40 years old, husband, father, small business owner, radio DJ, podcaster, and I have Multiple Sclerosis.

I created the What’s The Matter With Me? Podcast to share what I’m going through.

Portrait

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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Cooking While Disabled

Dinner on a Wednesday night

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Dinner on a Wednesday night

Cooking Yotam Ottolenghi’s Confit Leeks With Lentils, Lemon and Cream, something I would’ve enjoyed causes me to re-evaluate the way I cook.

In this episode, I read two consecutive entries in the “What I had for dinner last night,” journal. The first is from the night I made the leeks, and the next comes from the following day, after having cooked a more successful meal and having a discussion with my therapist.

“Cooking While Disabled” means that I need to adapt my techniques in the kitchen so they work for my particular needs.

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Oscars movie review. PLUS obscenity, ancient dramaturgy, jottings & more..

In this episode, responding to 2021 Academy Awards best documentary nominee, “Crip Camp.”

PLUS: Obscenity, Ancient Dramaturgy, Jottings & more..

Poet Michael McClure makes an appearance.

In the Jotting notebook, the power of autosuggestion.

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Welcome to the What’s The Matter With Me? Podcast, “Paratransit Certified”

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I’m Certified. PLUS Shout Outs, Jottings & More..

In this episode, I get certified for East Bay Paratransit. I’m fully vaccinated, and I’m ready to go back to the gym and the radio station after more than a year off due to Covid-19. Paratransit will help me get there. Shout outs to my art teacher, who steps in and gives me a little validation. I read some things I wrote down.

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I got a letter from a psychiatrist

In this episode of What’s The Matter With Me? Podcast, I receive a message from a psychiatrist who identifies some of the hurtful things my son was saying a couple episodes ago in Won’t Be Ashamed as relating to the Oedipus Complex. She thinks maybe he’s having Oedipal thoughts as he begins to identify with me, and that makes a lot of sense.

She wanted to know what comics I buy my son- it’s The Comic Garage’s Super Box. He just got a new one yesterday, and he was pretty excited.

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In this episode, we got vaccinated for Covid-19 at the Oakland Coliseum after hearing VP Harris had gotten involved there. The kids went with us, we drove up, it was easy, and when it was over it was a big relief. Plus, What I Had For Dinner Last Night and more.

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Spring Vacation Is A Hoax

Or At Least Seems That Way

In this episode, it’s spring break and the concept of family vacation appears warped and unrecognizable after a year of pandemic.

  • spring vacation is a hoax, at least it feels that way
  • I haven’t got the coronavirus vaccine yet, but I will
  • I keep a journal about, “What I had for dinner last night…”
  • We’re getting ready for grilling season
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For being who I am

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Won’t Be Ashamed For Being Who I am

Won’t Be Ashamed For Being Who I Am

Adventures in Disability Shaming

In this episode, my son tells me that he wants a new dad, one that isn’t disabled, who doesn’t use a wheelchair or a cane, and who is able to cross the stream by balancing on a fallen eucalyptus tree. I think it may be more-or-less normal for a kid to wish they had different parents, but it felt especially heavy that my kid was trying to hurt my feelings for having multiple sclerosis and being disabled. I pointed out that he was disability shaming me, that it was as if I had told him that I didn’t like being around kids because they don’t have driver’s licenses, or know how to multiply and divide. My point was that there are things that we don’t have control over and that it’s unfair to blame us for them. I think he heard me, the wheels began to spin, and maybe he’ll think this over.

  • the heat is working again
  • my son tried to hurt and shame me for being disabled
  • need to teach disability consciousness to my children
  • i went for a ride in my wheelchair with a friend for the first time and it was good
  • i’m using a sleep apnea CPAP device to sleep at night, continuous positive air pressure. my energy is better

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  • Facial lightning returned sometimes
  • Time change was rough after 1 year of covid lockdown
  • Giant glass chandelier arrived
  • Outdoor furniture came
  • Heating system repair right now
  • Sleep apnea machine is imminent
  • Mostly no one listens to this
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I moved to San Leandro. Season 5 has begun. I’m unpacking slowly and starting to plug in to the community.

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Interview

Thoughtline Interview

In this episode of the What’s The Matter With Me? Podcast, we’re presenting an interview with newly-elected San Mateo School District Board Member Ligia Andrade Zuñiga, who is a disabled wheelchair user. I interviewed her because I thought it was remarkable for a disabled woman to win an election. It originally aired Monday, December 28th from 6-7PM.on KFJC 89.7FM on the Thoughtline public affairs program. This material was developed to bring under-represented voices onto the air waves at KFJC, in order to “promote and increase diversity at the station.”

Powerful Representation

What Ligia says is very powerful, and it resonated with me, about how disabled people are invisible. My airname on KFJC is Hemroid The Leader. Please do not be alarmed. it is just an alias.

Connections

Interviewing Ligia was suggested to me by Alice Wong of the Disability Visibility Project, who we’ve covered before, and hopefully we’ll hear from again.