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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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.

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Interview
Interview someone and learn about them

In The Habit

We’re nearing the end of four seasons on the podcast. Like I said last time, I’m thinking of changing or stopping it. For now, I’m still in the habit.

I recorded an interview with the activist Ligia Andrade Zuniga that I hope to air on KFJC.

Reflecting on the mental health epidemic that accompanies the coronavirus epidemic, the podcast takes an unexpected turn.

It comes back on track at the end, courtesy of the words of Marc Maron.

Cya next time. As always, get me via the Contact Form. Hasta luego!

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Lots of boxes

I’m thinking about changing this.

I started this podcast with a determination to try and understand who I was as a disabled person, to grow my disability consciousness. Now that I am on the cusp of relocation, I wonder, did I accomplish what I came for? Let me know what you think via the Contact form.

This episode quotes from the first episode of What’s The Matter With Me? Podcast, “Trying.”

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I’m going to a new place

Things are changing, from my home bookstore to the restaurants I’ll eat at. I feel positive about it, but I’m having anxiety in the face of so much change.

I think what I mean by “home bookstore” is the bookstore where I’ll go most often, every week or so.

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Have you heard the news?

Updates to a few recent episodes. Recorded in the backyard

New Support

Good And Bad