What's The Matter With Me? Podcast

I have multiple sclerosis, trigeminal neuralgia and I made this podcast to share what I’m going through.

Matrix of Domination

Welcome to the What’s The Matter With Me? Podcast: Season 3, Episode 5: Matrix of Domination

Coming up, I’m afraid to get a scooter because I fear my own disability, I get ready to emcee for Walk MS, and try to understand my place in society vis a vis Race, Gender, Class, and Ability.

My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster. I have multiple sclerosis, so I make this podcast to share what I’m going through. What’s The Matter With Me? Is an MS podcast, and it’s also about other things. Past episodes can be downloaded on Apple Podcasts, from whatsthematterwithme.org, or wherever you get it. I’m not a medical professional, don’t take this for medical advice. If you need medical advice, ask your healthcare provider.

Shoutouts & Recap

I always have to do that. I always have to tell you call your doctor. Anyway, shout outs to Mary and David. Shout outs to people who contacted me saying, “That was a powerful episode, I almost cried.” I understand that, I have almost cried before. Please, though– don’t cry to this. That’s right, email me using the contact form, I’ll give you a shout out.

Recap, last episode I was talking about Sacramento, the scooter and 2666 and some new music I made.

I almost don’t have a lot to say. I mean a lot has happened in the last few weeks.


I decided to get a scooter last episode. I went to the scooter store, I tried on a few scooters, and I kind of was like, “I’m not sure.” I left, and then I just got less and less sure. Something is coming up in the next month or so, going to allow me to decide/know more about scooters. I really don’t know much right now. I just kind of have the salesman’s word. I wish I knew more ’cause buying a scooter, some people pointed out to me, I’m not going to get to do twice. I’ve got to get it right. That kind of freaks me out, and it’s making it so I can’t pull the trigger. I’m like, “Oh it’s so important. I have to get it right.”

I’m the Walk MS emcee

In a month, I’m going to be an emcee, I’m going to be the emcee. I mean forget about an emcee, I’m the emcee. My buddy Charles is coming with me. Come on, Charles is riding my coat tails, let me be honest. Got to take a break there before I bag on Charles too hard though. Anyway, we’re going to do the Silicon Valley Walk MS. That’s happening on May fourth, one day before Cinco de Mayo, so it’s like the mellowest day ever in San Jose, because it’s going to pop off after that, right? Cinco de Mayo. Anyway, that’s neither here nor there, but I’m going to be emceeing the Walk MS on Sunday May fourth in San Jose right next to the arena in the park. My idea about that is that I’ll see a lot of people with MS, and I’ll get a lot of ideas about what kind of scooter to get.

Fear of my own disability

I kind of think it’s silly to go out and drop it’s almost like 2000 bucks on a scooter, and not kind of see it all in motion and get feedback from people. I also am like, “Am I just being a chicken?” Maybe, maybe I am scared of getting a scooter. I’m scared that I’ll become a vegetable, and you can bury me in the ground. I don’t know, it’s fear of death I think, I guess, I don’t know, fear of something. I have a lot of fear. I’m afraid to get a scooter, it means I’ll be something. There’s probably something to that. My fear is that I’ll get a scooter and in so doing, I’ll like turn into something awful, which is really I think probably myself being afraid of my own disability, and beating myself up about it. I should just accept reality and realize that a scooter is going to really help me.

Interesting, this kind of leads into the next thing I wanted to talk about. I thought about the lens of gender, race and class, and about ableism. People talk about that, “Oh someone is discriminating against another person based on their level of ability”, and that is definitely a thing I can tell you as a person with a declining ability to walk for example, even though all that’s declined is my ability to go on a long walk, people treat me like I’m somehow deficient, which I guess I am if we’re in a walkathon. I think I will make a great emcee for the MS walk! Talk about it! I’m excited for that. I think it’s going to be positive and powerful and awesome. I think anytime you get a group of people together.

Race, Gender, and Class

Well then I started thinking about that, race, gender and class, and I started thinking about ability. It brought me to something. My therapist went to Austria to film The Special Olympics last year. The spring of last year’s Special Olympics was in Vienna. We talked about the desserts of Austria, even though I don’t really know anything about it, I know they’re supposed to have really good dessert. I kind of was like lusting after it. I was like, “Oh you can eat dessert when you go there.” If I go to Austria, I’m going to dessert. Funny, I use swipe assistant type typing, and it thought I said deserts, the deserts of Austria. I wonder about if there are deserts in Austria, maybe I’ll get back to you. All right, I checked that out. There are not deserts in Austria, there’s the River Danube and a bunch of alps, that’s what’s going on, mountains and rivers.

When my therapist came back from Austria, he said he had a realization that disability affects all people regardless of sex, class or race. Disability is complicated because I’m having trouble with disability, and I’m an American white male. I have definitely a certain amount of privilege that goes along with the experience of being disabled by multiple sclerosis. What can I do about that? I went searching about race, class, and gender, thinking it was going to help me. This is from the University of Albany’s website talking about race, gender and class analysis. It says, “It invites us to distinguish between thinking comparatively and thinking relationally. People think comparatively when they learn about experiences other than their own, and begin comparing and contrasting those experiences.”

“It’s a step beyond centering one’s own thinking on a single group, typically your own. Relational thinking involves seeing the inner relationships among diverse group experiences. When you think relationally, you see the social structures that simultaneously generate unique group histories, and link them together in society.” Everyone has a race. Everyone has a gender. Everyone has a class. We can compare our position in that lens. We all have those three things. We’re all at a different level. Also, we all have ability, that’s what I realized. We all have a level of ability. I had to turn to this kind of analysis, thinking relationally: “you untangle the working of social systems that shape the experiences of different people and groups, and you move beyond just comparing gender oppression with race oppression, or the oppression of gays and lesbians with other racial groups.”

“When you recognize systems of power that mark different groups’ experiences, you possess the conceptual apparatus to think about changing the system, not just documenting the effects of the system on people.” Now that’s interesting, it’s like a way to analyze this complex machine. What is that term they used? I love it: “Because of their simultaneity in people’s lives, we advocate using the approach of a matrix of domination to analyze race, class and gender as different but inter related axes of social structure.” We all can plot ourselves along these different axes. It creates like a different social mechanism, social creature in each person.


Wow, that was hard. I’m not going to sugar coat it. You guys are geniuses if you listened to all that. Anyway, that’s true. I mean we’re all kind of trapped in a matrix domination.

You can change culture

Hey, culture changes. It’s not you’re trapped in glass. It’s true, you can change culture. Back in episode 13, 14 and 15, way back, I had a lot of problems with people parking in the handicap space. I’m trying to drop my kids off and people would park there using it as a five minute space or something. I had a lot of problems, but I talked to people, I got help in the organization and I kept at it. It kept showing up in episode after episode, I’d try and drop my kid off, someone’s in the space using it as a convenience. For me, it’s like I need access. I stuck with it.

I haven’t had anyone park in the space for a long time. The one time it did happen, I saw another parent who I had been going to the center with for a long time stop by and tell them, “Hey, this isn’t for people to just park here. This is the handicap space.” Someone backed me up. The culture changed, that is a cool thing you can do that. Stick with it, we can change culture.

Thank you for listening

Thank you for listening to What’s The Matter With Me? Podcast, season three episode five: Matrix of Domination. Find other episodes at Apple Podcasts, whatsthematterwithme.org or wherever you get your podcasts. The worldwide universal sponsor Hoppin Hot Sauce is a movement. (singing). Hoppin Hot Sauce is a movement, get with it. hoppinhotsauce.com. Thank you for listening to the What’s The Matter With Me? Podcast season three, episode five: Matrix of Domination.


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