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.

Using Our Voice Makes It Stronger


Disabled 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.

Begin Transcript

JOHN HOPPIN: What these people said really impacted me and really moved me, so I wanted to talk about this.

Welcome. Thank you for tuning in. Welcome to the What’s The Matter With Me? Podcast.

My name is John. I’m 41 years old, husband, father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis. So, I made this podcast to share what I’m going through. What’s The Matter With Me? is an MS podcast. Also, it’s about other things.

I’m not a medical professional. You should not take this for medical advice. If you need medical advice, ask your healthcare provider.

The article that I’m looking at today is from the New York Times.

Dateline, July 26, 2020. We’re 20 Percent of America, and We’re Still Invisible. Disabled Americans are Asking for True Inclusion. By Judith Heumann and John Wodatch. Ms. Heumann is a disability rights advocate, Mr. Wodatch a civil rights lawyer.

“On July 26, 1990, President George Bush signed the Americans With Disabilities Act into law. Like the Civil Rights Act of 1964, the A.D.A. was watershed legislation, the culmination of a decades-long campaign of organized protest and activism. It, too, was a victory in the struggle for equality for a group of people that had been systematically denied basic rights and access to public spaces and services.

“On the 30th anniversary of the law, it’s only natural to want to celebrate. And we should. Yet just as many of the injustices that the Civil Rights Act aimed to eliminate are still very much with us, and still being resisted, the full promise of the Americans With Disabilities Act has yet to be realized. We are not yet where we need to be.

“Historically, disabled people have been hidden away. Disabled people can make nondisabled people feel vulnerable. This situation is thrown into sharper relief when we compare our visibility to that of other identity groups. If you’re unconvinced, try this experiment: Randomly look at any 50 print advertisements. You will no doubt find racial and ethnic diversity. You’ll see women and men of different sexual orientations. You will see gender fluidity and people of all ages. What you won’t see, or you’ll see very little of, are representations of disabled persons.

“This is just one expression of how the stories of our lives are excluded for general public discourse. Even though it’s common for a disability to overlap with identities across the spectrum of minority groups, fighting discrimination on the basis of disability continues to take a back seat in our national consciousness.”

There’s a discussion about A.D.A. accommodations. And skipping down, she continues, “Requirements like making playgrounds and movie theaters accessible, providing sign language interpreters in emergency rooms or accessible websites for registering for community programs have been life-changing. But only when people with disabilities routinely work and play alongside their fellow citizens will deeper change occur.

“The Individuals with Disabilities Education Act and its predecessors have required inclusive education since the 1970s. And we have seen firsthand how the attitudinal barriers long common in this country are disappearing in those students who have been educated with disabled peers. Having disabled persons in decision-making, in product development, design, governments, in the digital world is also critical. And the A.D.A. generation, an apt term coined by Rebecca Cokley for disabled persons born after the A.D.A., will lead the way. This generation is active, aware, and taking steps to call out and challenge ableism when they encounter it.”

Which is so rad. Have to take a break for a little aside here: That is so rad. Big, big ups to the kids.

“But this generation cannot bring about change alone, nor should they. When President Bush declared on the White House lawn 30 years ago, ‘Let the shameful walls of exclusion finally come tumbling down,’ he was calling on us as a nation to recognize our responsibility to end discrimination. If the moral arc of the universe is to continue to bend toward justice, we must embrace disability as a critical part of diversity, and truly welcome one another, in both letter and spirit, as equal members of society.”

“Mr. Wodatch is a former DOJ lawyer and the chief author of the regulations of both the A.D.A. and Section 504 of the Rehabilitation Act of 1973, an anti-discrimination law that was a precursor to the A.D.A. He’s an international disability rights activist. She was the leader of the 504 sit-in in San Francisco in 1977, at 25 days the longest nonviolent occupation of a federal building in American history. Ms. Heumann’s role in that protest has been documented in the recently released film Crip Camp and her memoir, Being Heumann.”

So, awesome op-ed.

What these people said really impacted me and really moved me, and so I wanted to talk about this.

I’m trained as an artist. You know I went to art school, and I kind of … Now I run a hot sauce company, hot sauce business. I think about it like art. It’s a thing that I made, and it’s because that’s my training, and was to imagine something and bring it into reality. That’s kind of how I think about being an artist.

But as I became disabled, I felt the same weight of the inherited silence that, “I’m ungainly, I’m bulky, I make people uncomfortable. Maybe it would be better if I was just away and I was quiet.” I felt that. And even if I decide, “No, I’m going to be here, I’m going to be loud,” that weight and that feeling is still there. That’s why I’m doing this now. I’m trying to make my voice stronger. I’m trying to use it.

Like I said way back in like episode 25, I think it was, I’m never going to quit and that I basically I’m never quitting the podcast. I think that it’s called … Episode 25 was called Keep Going. “I’ll never give up- looking out my window all my life. I didn’t quit doing this thing, that is very scary, to share. I’ve built my disability consciousness, and that will continue.” I posted that December 5, 2017. Now it’s in August now, August 4, 2020. It’s almost five months in this pandemic hell.

Disabled 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.

I think that’s what I was getting at about being an artist. It feels like censorship, to be rendered invisible. I think it’s a particular experience to go from being able-bodied and normal to being outside the norm, not pictured or represented, to have yourself kind of … I felt myself being erased and my viewpoint being hidden away, and I felt it live as it happened.

So, that’s what this episode of What’s The Matter With Me? is about. It’s about using our voice makes it stronger. And that’s true for everyone. Everyone. That’s what this episode is about. Thank you for tuning into What’s The Matter With Me? Podcast.

Disabled voices, able voices, and those in between or outside the dichotomy, using our voice makes it stronger, so use your voice. Advocate for yourself. I’ve recorded a new episode of Hoppin Hot Sauce Pepper Show. I talked about being an agitator. Everyone needs a little agitation. Some need more than others. So, use your voice. Advocate for yourself.

Thank you for tuning into the What’s The Matter With Me? Podcast.

My name is John, and you can email me via the contact form. Hit me up. I’ll give you a shout-out. Thank you for tuning in. Until next time. Let’s get through this thing. Find the old episodes, and listen to all of them at Whatsthematterwithme.org, and they’re on Apple Podcasts. Thank you, and see you next time.


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