This is an interview with Jose Rosario, a bad ass activist, mental health therapist, super smart and fun guy who has somehow never watched Star Trek. It is a part of the Cool Cats: Voices from the Disability Community series, in which Meriah interviews cool people from the disability community so you can get to know them.

Jose's "Short" Bio

Born to young Puerto Rican parents, José Rosario developed Cerebral Palsy as a premature baby. His family's journey towards equity deeply impacted his mental health. Currently nearing his PhD in Clinical Psychology, his research focuses on cultural trauma in intersectional communities. He is an Interdisciplinary Minority Fellow for the American Psychological Association, member of the Congressional Diversity and Equality Advisory Board for Congressman James Langevin, and member of the Rhode Island Attorney General Community Advisory Board. He has been honored with the Chris Martin Humanitarian Award and the Victoria Lederberg Award for Excellence in Psychology. José is a keynote speaker and workshop facilitator helping business, nonprofits, and educational institutions to understand and implement identity-inclusive mental health protocols and culturally aware community healing.

https://youtu.be/_ZgoUvAopKg

An Interview with Jose Rosario, Cool Cat

Meriah: [00:00:00] Okay. Welcome Jose. Thank you so much for joining me here on Unpacking Disability and, the Cool Cat Voices from the Disability Community Series where we try to. bring disability community together and introduce cool people from the cross-disability community of which you are definitely one. And thank you so much for being here.

Jose: Thank you for having me. I'm so glad that we have a space to also show people with disabilities is not one note characters. We are complex.

Meriah: Oh, absolutely. I'm wondering if you can take a minute to introduce yourself.

Jose: Sure. Who am I? That's a great question. I am a speaker. I'm an activist.

I'm also a therapist. I'm mental health therapist, and I'm a researcher. All of my work is about intersectional violence and how intersectional communities, queer bipoc folks, [00:01:00] queer, disabled folks react to violence and engage in healing. And so, I'm often thinking. About how folks are experiencing harm from various directions.

And we don't just cower in fear. There are ways in which we pick ourselves up as a community and move forward. And so, wanting to bring that to light and support and affirm that as much as I can.

Meriah: Wow. Thank you. There's so much I want to talk to you about. Yeah. So much. One of the things about the Cool Cat series is as I started this a long time ago,and I ask the same set of questions to everybody. And the point of that is really to emphasize the difference in our answers and how we are so very different. Like we're all coming to this with a lived experience and disability and we're so diverse. I think that's part of the beauty of everyone answering the same set of questions.

Diving into those questions, [00:02:00] I am wondering what is your connection with disability?

Jose: Oh, such an intimate connection, right? I have been disabled my entire life, and I recognize that disability is the one identity where it can happen anytime in your lifespan. So, all I know is my experience as a disabled person.

I was born premature. A couple of months into birth, I stopped breathing and, acquired some brain damage, which led to my CP diagnosis. And so being in a wheelchair using canes like this has been a huge part of me. And I think for a long time there was this. Tension, right? The sort of like, why me aspect to this?

Why am I different? What did I do? Why did I have to be this way? And I have very fortunately swung on the other side of the pendulum and been like, you know what? The way that I have to access the world, the way that I have to go into a space and be like, how do I arrange myself here? How do I navigate?

This has been a skill that has taught me a [00:03:00] lot. It's taught me to think on my toes to be flexible. And I have really found meaning in that. And as I get older and as I delve deeper into my own career, I'm finding myself really looking, and we were talking about this before this about ancestral wisdom, right?

And I come from some pretty cool disability activists, right? Like those people are the people that we come from as a disability community. And so really finding strength and love and affirmation and people like Judy Heumann, for example, is a big hero of mine. So that's my sort of quick spiel on how I feel about disability.

And I love the word disability too. It's a historical term, right? It is a civil rights term. I want to reclaim that word.

Meriah: I feel very strongly about that too. Amen.

Jose: Yeah.

Meriah: Quick question, Star Trek or Star Wars.

Jose: I have to be honest, I am, I'm not familiar with either, but I love Baby Yoda, so for my partner, I'm going to say Star Wars.

Meriah: Yoda is pretty cool, yeah. Can [00:04:00] never fault Yoda.

Jose: that's all I got. So, we got to go with what we have.

Meriah: Okay. If you could live in any other country for two years, where would you go?

Jose: Oh, my goodness. I would say Puerto Rico, but obviously that's a complicated. Answer, because of the colony status. But I think if I had to think outside of that, I've actually heard that London is pretty accessible. Given that we don't have the A DA in another country, that it can be pretty accessible.

Meriah: Wow.

Jose: That's cool.

Meriah: And what dish would you bring to our community picnic potluck.

Jose: Oh, you picked the right question for the right person. I am a foodie. I love cooking. I think food allows me to connect back to my family.

I think I'd have to bring some kind of Puerto Rican dessert, specifically coconut rice pudding. I know it sounds odd. No, I love it. I love it. Yeah, I could eat it every day. There's something about the spices and the coconut. It just brings me right back home. [00:05:00] Yeah, you're with me. Yeah.

Meriah: So, I'm wondering if we could move in now to, and this is probably going to be a really big question for you because you've done so much. But how did you come to doing what you do? Like how has your career trajectory flowed?

Jose: Yeah. I always say that I thought my career was going to be something very different. I trained as like an addiction scientist, so I was very traditionally, psychology focused, right? Looking at things like interventions and randomized control trials, and I thought that was where I was going to be. Like, I really thought I was going to be that guy that just did trials all the time. My life changed. Overnight, really, in 2017, somebody asked me to come to a talk, and I thought, oh yeah, I'm so ready. I'm going to bring my data and I'm going to make charts that match the colors of the conference and it's going to be so great for my nerdy brain. And they were like; we don't want that.

We want you. And in sharing my own experience of being a mental health professional, of being different. [00:06:00] That was the theme of the talk. I realized that I'm not happy with science that is decontextualized. Like I want to think about how people's lived experiences impact mental health and psychological wellbeing.

And from that talk finding people saying I wish my brother could hear this. I wish my neighbor could have heard your talk. It made me realize I'm not alone. There are so many people who have lived experiences that impact our mental health and that led me to the Phoenix Empowered the idea that like, we have to rise up, but we actually have to be empowered to rise up.

Otherwise, it's not going to happen. And so that's where my life's work Really pivoted and now it's all about that. It's all about uplifting the stories and educating the public to be like, mental health is not one size fits all, and we need to do better. We have to, for the communities that are suffering currently in our world, I get passionate all, yeah.

Meriah: Thank you. And that is so interesting, like how you were really on one track and then it just [00:07:00] serendipitously evolved and expanded to include more of who you really are, huh?

Jose: Yeah. I don't even recognize that person anymore. I feel like I'm living in my truth now.

Meriah: And where would you like to see yourself in five years?

Jose: In five years? I have a dream that our nonprofit will be able to open a holistic, fully radical, healing centric center for wellness that can provide more services nationally and do more than we're already doing.

I think in five years, I want to see us being at the forefront of the mental health conversation and talking about how identity and mental health are interconnected. That's my goal for the next five years, I've always loved video production.

I'm a film nerd, and so thinking about different media ways to talk about mental health has always been interesting to me.

Meriah: Yeah. I couldn't agree with you more about how that. That identity and that inter intersection and all of that just really, it's all connected.

Yeah. But I'm wondering, could we [00:08:00] also take a minute just if you could, tell, talk a little bit more about your nonprofit? What is the Phoenix Empowered about?

Jose: Yeah. So, we have a, the two-pronged mission, right? The first part is uplifting stories, and we do that in a couple of ways.

We have a blog that people contribute to. We're actually relaunching our podcast because. Ironic to the story I just talked about my career launch, the first season of our podcast. I'm going to name it. I'm going to say it. It was pretty boring. It was pretty sciencey and academic and some of the feedback I got was like,

This is an essay about perspective, choosing the stories we tell ourselves and the ways we wish to frame our own narrative. This was originally published in February 2020 but remains just as relevant today as it did then. I read the post in the video below, or listen to it through the podcast embedded. Options!

https://youtu.be/9q4y1sDa7t0?si=GOjq2NsMya2w7vCZ

I woke up feeling kind of crappy.

My body felt old, I feel like I never have enough energy to do everything I want to do, and that bums me out. I have a mountain of things to do, and a lot of them include stuff like bill payment, but then the paint is flaking off the walls of my new house (- because the people who sold it to me did some kind of quick-fix paint thing and it's all falling off).

I have to call to go to an audiologist, to make sure I'm really deaf, so I can qualify for a deaf tax credit. I have to call to take Mack to an audiologist because his teacher has concerns about his hearing.

Bleh.

All of this stuff is my Pile o' Life , and for sure, the longer I look at it, the bigger it all gets and the more tired I feel.

But I'm not unique or alone in having a Pile o' Life!

We all have it. It may or may not include disability.

I can't choose the elements of the Pile o' Life very easily, but I can choose what I do with them, I choose how I feel about them, I choose what my focus will be.

When I feel really crappy and overwhelmed by my Pile, I close my eyes and I think of my perfect world.

I think of my world at it's best, what I dream of.

I write out a story - a magical, fanciful story of the wonder of my life, of all the beauty that it has and holds and expounds.

I write out this story of my world as my spirit sees it, not as the Pile sees it.

Simply the act of doing this is transformative, empowering, a pivot, a game changer.

Us Parents of Kids with Disabilities Have a LOT on Our Plates

There are no ifs, ands or buts about this.

I spent two solid weeks crying over my daughter's IEP; I spent another two solid weeks trying to figure out my son's 504 and if he was going to get one, or what.

I spent a few days even grieving about my third kid potentially having one of the same disabilities as me - and I know I'm "not supposed" to grieve; it's supposed to be totally kosher and cool because I am a strong proponent of disability culture, right?

But I DO grieve. 

I grieve because disability is a natural and normal part of the human experience and yet it's such a big fucking deal with people who don't understand it.

I grieve because I don't want my kids to go through what I have. I grieve because while the personal experience of disability can be powerful and wonderful, public access and inclusion are royal pains in the ass.

Us People with Disabilities Have a LOT on Our Plates

There are no ifs, ands or buts about this.

I have to fight for every.single.scrap of access that is thrown my way.

I need to figure out how to stay strong and true to my spirit while wading through mires of C-PTSD and neurodivergence.

I need to figure out how to remember anything when my brain wants to let loose.

I need to figure out what is being said around me, because it's all a hushed mumble.

I have constant, daily stress from the news and the threats of x, y and z being cut and I don't know what I"m going to do about any of it.

I am exhausted from trying to explain how I "don't look" disabled but I sure as hell am, and that being disabled is not a bad thing.

These Plates of Mine Are Full

The plates, the Pile o' Life.

All that stuff is real and there and like I said, the focus and feelings are my choices.

So I sit down and write the new stories.

I write stories of a world that we create that celebrates every person, ALL PEOPLE, that realizes and recognizes that we are all Beloved.

I write stories that include my beautiful home, my gardens that feed and sustain both body and spirit, that heal and nurture.

I write stories that include my three lovely children, each so perfect in their existence. I write of them happy, flourishing, thriving, learning, growing, being and becoming who they truly are.

I write stories of a life in which communication will be easy for me.

I write stories that bring me joy as I write them.

Then with the joy that they bring, I feel a renewed sense of energy, enthusiasm and power and I'm able to see the Pile o' Life differently.

The Stories We Create

What we say about ourselves: the words we choose and the narratives we tell, are so powerful.

I create a story of my life in which I am a certain type of person engaging in the world in a certain way. I could weave my story in one particular way, with a heavy focus on the lack, on the negative, on the challenges. Or I can tell my story in a way that makes me feel more powerful.

On Disability:

Disability is not a challenge to be overcome: it's a platform upon which I live my life.

Disability is a natural and normal part of the human experience.

Disability is value-added; we learn, grow and thrive to an utmost extent when we lean in and figure the "disability" component.

On Being a Single Mom:

Being a single mom means my kids thoroughly learn self-sufficiency, responsibility and independence

My kids learn the value of one active, engaged grandparent (- my mom)

Timing and organization, resourcefulness and financial management become stellar, natural skill sets

On Death and Loss:

I had the experience of knowing what a truly great brother is

I have an angel that I can call by name

My grandparents gave me wonderful, funny memories that I am grateful for, and a rich love for movies and learning

I could go on, but you understand where I am going with this.

It's about focusing on the things I want to focus on, it's about focus and weaving and creating a narrative that shifts my feelings, enhances joy, and ultimately, literally BECOMES MY REALITY.

We create our lives and our stories.

We spin our tales as we will, we shape our narratives and we choose the angle, the plot twist, the trajectory.

So how do we want to tell it?

This is an answer to a question posed, "why do I need to feel pride in my disability? Isn't it enough that I accept my disability?"

It will talk about disability pride, models of disability, sparkle sauce and glitter juice. You can watch me read the essay below, or listen on the podcast (it has been edited, but was originally published in July of 2022)

Watch the Podcast Video of "Why Do We Need to Feel Pride in Our Disability" here:

https://youtu.be/2Rlmm4FSCZc

square pegs in a round hole world

Listen to me read this by clicking the player below.

Why Do We Need to Feel Disability Pride?

Why do we need to feel disability pride at all? Doesn’t that feel slightly masochistic, feeling pride in something that has given us grief in our life? Feel pride over something that essentially “isn’t working” from a mainstream cultural perspective. As a friend said on Facebook, “isn’t it enough that I accept it? Why do I need to feel pride over it?”

“Isn’t it enough that I accept it? Why do I need to feel pride over it?”

Brene Brown wrote in Atlas of The Heart that pride is a feeling of pleasure or celebration related to our accomplishments or efforts. This is authentic pride, it’s positive and can be felt for ourselves and/or others. “I can feel proud of myself, proud of you, proud of us.”

Pride is an emotional response or attitude to something with an intimate connection to oneself, due to its perceived value. Oxford defines it as "the quality of having an excessively high opinion of oneself or one's own importance." Wikipedia

Hubris, on the other hand, is “an inflated sense of one’s own innate abilities that is tied more to the need for dominance than to actual accomplishments.” It’s the negative piece that usually flavors the word, “pride,” and is not actually part of pride at all.

To me, there are two things going on with using “pride” in connection with disability: there is the definition of pride itself and the negative taste it can leave in our mouths. And there is the confusion over feeling like we must feel pride over something that may have simply been something difficult for us in our lives. 

The Feelings Associated with Disability

The feelings that we tend to feel growing up with disabilities are shame (feeling flawed, unworthy of love, belonging, connection), guilt (feelings of what we’ve done or failed to do, putting others out, been an inconvenience), humiliation (feeling belittled and put down), and embarrassment (feeling that we’ve done something that has made us uncomfortable, but is a fleeting and relatable experience). 

These feelings plug in to the medical model of disability (that disability needs to be fixed), and they make perfect sense when viewed through that lens. 

We feel guilt our families have to go out of their ways to accommodate us, guilt that everyone in our class must wait, bored, while the teacher tries to figure out how to enable the closed captions in our Zoom session. We feel shame in who we are when we see ourselves through the lens of the medical model, that we need to be fixed, made “well”, that our edges of our square pegs need to be shaved off to fit in the round holes of the world. 

Read: Square Pegs in a Round Peg WorldThe power of the neurodivergent

The Social Model of Disability

The social model of disability, however, sees disability as a natural and normal part of the human experience. From the social model of disability, it’s the culture that we live in that’s the problem, and culture can be changed. Culture is a living expression, it’s fluid, it can transform. Shaving off our square pegs to fit in the round holes of the world, a’la Medical Model of Disability, is a travesty from the viewpoint of the Social Model of Disability, as it removes all juju, the mojo, the good sauce that disability brings with it. It’s like a giant vacuum cleaner hose, sucking up the glitter that also makes up disability.

And make no mistake about it: there IS glitter in disability. There’s sparkle-sauce and awesomeness in the world of disability. Whether or not mainstream culture recognizes it, almost everything that is deeply cool in the world came from someone with a disability. Think about it: we’re the ones who push outside the round pegs of the world – we push past the given consciousness. We literally go to new places in the way we think, emote, express, hear, see, move. Even Donna Summer had a disability!

Back to the question my friend asked: 

Isn’t it enough that I accept my disability? Why do I need to feel pride over it?

Simply accepting our disability is living with the discomfort of being a square peg that’s rubbing into a round-pegged world. It’s fine. It works. It’s tolerable. But pride in our disability is finding our square edges, understanding what those square edges are to us, and celebrating them. Those square edges have sparkle-capacity and the very real capacity to change ourselves, change our world. We are never who are truly meant to be without them: they literally give us our edge. 

That’s why I think choosing to feel pride makes sense. 

Read More:

Brene Brown, Atlas of the Heart, pg 242-243; 134-165

Hubristic pride and authentic pride (Authentic and Hubristic Pride: Differential Relations to Aspects of Goal Regulation, Affect, and Self-Control): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3137237/

Wikipedia, Pride: https://en.wikipedia.org/wiki/Pride

Opinion Pieces

Posts that I've written about disability access, inclusion or things said

3 Reasons to Say "Disability" Instead of "Special Needs"

“Wheelchair Bound” Sound Kinky

10 Dumb Things the Hearing Say to the Deaf (Featuring Captain Picard)

"Special" is the New "Retard"

That Teacher Carrying a Wheelchair Using Student

What People First Language Is (& Why and When It’s WRONG)

Square Pegs in a Round Peg World: The Power of the Neurodiverse

This is about Elevatus Training, which is a Sexual Education program for people with Intellectual and Developmental disabilities. This was originally published in 2021

The full interview is in video below. If you prefer the podcast version, just click the link above. The full interview transcript is at the end of this post, with the highlights proceeding it.

Sex Ed and Intellectual or Developmental Disabilities: Why We Need to Talk About It

Sex education and intellectual or developmental disability (ID/DD) is one of those topics that many parents instinctively shy away from—but it’s absolutely essential. This is not an optional conversation. It's one of those "musts" that sits high on the list, right alongside safety, communication, and autonomy.

While exploring what’s out there in the way of sexuality education for people with ID/DD, I came across the work of Katherine McLaughlin. Her website immediately stood out—not just for the depth of the content, but for the tone. It was clear: she gets it. Her approach is grounded in respect, empowerment, and genuine connection with the disability community. She isn’t approaching this work from a top-down, clinical perspective—she’s meeting people where they are and honoring their lived experiences.

Her trainings speak directly to self advocates, parents, educators, and support staff. They're practical, affirming, and designed to build real understanding around sexuality, safety, and healthy relationships. It's the kind of education that doesn’t empowers as it informs.

I reached out to Katherine to see if she'd be willing to meet, and she graciously agreed. We spoke over Zoom, and I recorded our conversation so I could share it with you. You’ll find the video of our interview below. It's full of insight, warmth, and wisdom I think all of us can benefit from.

https://youtu.be/C4xlPk39fvc

An Interview with Elevatus Training's Katherine McLauglin on Sexuality Education and ID/DD

Key Takeaways from Elevatus Training and Sex Education with ID/DD

Katherine McLaughlin is a veteran sexuality educator and trainer with over 25 years of experience, specializing in sexuality and developmental and intellectual disabilities. Her journey began at Planned Parenthood, where she noticed a lack of support for individuals with disabilities in sexual education. Her passion deepened after acquiring a spinal cord injury and becoming a wheelchair user, which offered personal insight into how disability can shift societal perceptions and reinforce the need for inclusive, empowering education.

Katherine developed her curriculum in collaboration with self-advocates from Green Mountain Self-Advocates, embedding a core principle of “nothing about us without us.” The result was a team-taught model where people with disabilities co-lead sexuality education classes alongside professionals. Her work now includes a wide array of training: from 3-day professional intensives to online classes and in-service trainings for self-advocates, parents, and staff. Notably, she recently completed a 3-year project in Michigan training 25 professional/self-advocate teams to teach throughout the state.

She emphasizes that barriers to sexual education for disabled individuals often come not from the individuals themselves—but from parents and staff who fear or misunderstand sexuality and disability. Common myths include beliefs that disabled people are asexual or childlike, or that talking about sex will encourage sexual behavior. Katherine counters these misconceptions with evidence: education delays sexual activity and increases safe practices.

Body autonomy is central to her teachings. Many people with disabilities are conditioned to comply and lack agency over their own bodies and lives. Through empowering practices—like small games that reinforce personal choice—Katherine helps students internalize the right to say no and own their decisions.

This is from my ongoing question-and-answer series, "You Ask, I Answer" in which I take questions that you send me and attempt to answer them. Do you have a question?

A Reader asks, 

What is "disability justice"? Isn't it the same thing as "disability rights"?

Dear Reader,

I love your question and I'm glad you asked. Disability justice is a sweet, sweet subject and I'd love for our community to be talking about it more. And no, dear reader, disability justice and disability rights are not the same thing.

Disability rights are about laws—protections meant to create access and inclusion. Ramps, interpreters, Braille, IDEA, the ADA. All important. All necessary for access.

Disability justice goes deeper. It’s about culture. It’s about liberation, intersectionality, community. It’s about building a world where disabled people—all of us—can thrive, not just survive.

The term "disability justice" was coined by Patty Berne of Sins Invalid. Disability justice asks us to look beyond ramps and legal wins to the intersectional elements within ourselves and our communities. Disability justice recognizes that we’re not just disabled. We are also made up of all the other intersections that make us who we are: black, brown, queer, trans, fat, poor, undocumented, incarcerated. It recognizes that all of our intersecting pieces matter.

Disability justice is grounded in principles like:

Intersectionality – Our identities don’t live in separate boxes. They overlap and shape how we move through the world.

Leadership of those most impacted – Disabled people of color, queer and trans folks, and others at the margins are at the center.

Collective access – Access isn’t a checklist. It’s a practice of care we build together, in community.

Collective liberation – We don’t get free alone. We get free together.

Sustainability – We honor the pace of our bodies, our minds, and our lives.

Now let’s talk about disability pride and disability identity for a minute.

Disability pride isn’t just about waving a flag (though the Disability Pride flag is pretty great). It’s about unlearning shame. It’s about knowing that disability isn’t a flaw or a tragedy, that disability is a part of us, that disability is a source of connection, creativity, culture, and wisdom.

Disability identity can probably get a little gnarly as so many of us grew up without the words, grew up taught that the goal was to be non-disabled and so we grew up trying to pass as non-disabled. We were taught that we shouldn't want to be disabled, or to appreciate our respective disabilities.

Finding our way back to who we really are - which includes our disability - and claiming it, can feel like coming home. Even if it’s a home that still needs unpacking and a bit of patchwork. That’s okay. We still belong.

Back to disability justice. Disability justice invites us to imagine more. To go beyond inclusion. To build belonging. To embrace interdependence. To celebrate the full, brilliant complexity of who we are.

The 10 Principles of Disability Justice, Sins Invalid

https://www.youtube.com/watch?v=OTE42livhQg&t=2s

If you'd like to watch me reading this, here's the video!

https://youtu.be/kURo35Co6jY

Corbett O'Toole was a keynote speaker at the 2025 PacRim International Conference on Disability. It was awesome; you should have been there. I love her so much, and I loved her keynote so much that I wanted to share it here, and got lucky because everyone said I could. :) Please scroll to the end to watch the video of her speaking. These are words we need to hear right now.

 Aloha. I'm really happy to be here and I'm really sorry I can't be there in person. In addition to my other disabilities, I got long COVID, so I no longer am able to travel. I'm currently sitting out in the Arizona desert and wishing I was there with you in beautiful Hawaii. Today I've been asked to share my experiences on the disability rights movement.

I just want to point out that I'm talking about the Disability Rights Movement, which is a movement that focused primarily on access, physical access, ramps and braille, et cetera, and was mostly run by white people with physical disabilities. And I'm not talking about the Disability Justice Movement, which is a movement that focuses on intersections of oppression and is led by disabled people of color.

For more information about the disability justice movement, a good place to start is the Sins invalid website. When I was growing up in the 1950s, and yes, I am that old, I didn't know hardly any other disabled people, and the world was not accessible in any way to me or anybody else with a disability. So imagine my surprise when I was 22 years old and I moved to Berkeley, California, and suddenly I was surrounded by all these people with disabilities and the single most important shift that happened was inside me.

I mean, my body didn't change, the environment didn't change, but suddenly I was with people who said, we deserve to be treated with respect. We deserve to not be discriminated against. A good example of this is when we went into a coffee shop. When I would go into a coffee shop by myself before I'd be worried about people staring, and if they said something inappropriate, I'd be all like, oh, it's all my fault.

When I would go in with a group of disabled people who all loved who we are, loved being with each other, if something happened, we would just look at them and look at us and go. It's too bad they don't see how fabulous we are. 'cause we know we're fabulous. I see. You are fabulous. You see my fabulousness.

We're good. That was a huge shift. We taught each other that we deserve to be treated well. We deserve to have access to healthcare, asks us to education, to employment, to our choice of families. We wanted all of that. But we knew that in order to have that, we didn't just have to change attitudes. We had to fight for our rights.

Prior to 1973, I might have rights in one town or one state and not in another. But in 1973, section 504, just one sentence, in the Rehabilitation Act got passed by law. Unfortunately, in 19 77, 4 years later, it still hadn't been enforced. So I had rights, but I couldn't use them. What was I gonna do? So disabled people across the United States decided that they were going to protest in April if the regulations to enforce 504 were not signed.

I was part of a group in San Francisco of over 100 disabled people, our families, friends, and support workers who moved into the federal building and stayed there for 26 days until those regulations to enforce 504 were signed. I learned a couple of valuable lessons from that time. One, nobody's gonna give us our rights.

We have to know we deserve them. We have to fight for them. And sometimes that means protesting. And two, that to be successful, people with disabilities from a variety of disability communities and racial and ethnic communities and language communities have to come together for a common goal. We got the 504 regulations because we worked across differences towards the goal of getting the regulations, and that was a very important lesson for all of us.

This is a personal post about where Moxie is in her educational journey and all the feeings that come along with this

Moxie starts high school in August.

She’s had a solid run at her intermediate school. Her sixth-grade elementary teachers really saw her—they believed in her and recognized her strengths. Thanks to their advocacy, Moxie was placed in what’s called “General Special Ed.”

I’m not sure how things work where you are, but here in Hawaiʻi, our district uses four tracks: Honors, General Ed, General Special Ed, and Segregated (or “Fully Self-Contained”).

General Special Ed tends to be a mix—students with various disabilities or behavioral differences. Segregated classrooms are typically where students with more significant intellectual or developmental disabilities are placed. In my experience, students with Down syndrome are almost always placed in the Segregated track. I’ve never seen anyone with Down syndrome placed in General Special Ed.

But Moxie’s teachers advocated for her, and she landed in General Special Ed—with the best Special Ed Coordinator I’ve ever encountered. He was phenomenal—genuinely committed to understanding and supporting her. He made a massive difference.

He and the school administration even allowed me to quietly observe her classes. That may not sound like much, but it was huge—especially in contrast to her elementary school, where parents weren’t even allowed on campus, much less in classrooms.

Through those observations, I got to witness her agency. Moxie knows what she wants. She had her priorities: time with her favorite teacher and lunch. She was consistently late to the class she didn’t care about—because it just wasn’t important to her.

I also saw that, while students were friendly on the surface, she didn’t have any actual friends. She was almost always alone. I cried over that. But Moxie didn’t.

There were some truly outstanding teachers in her intermediate school. That said, the school counselor missed a lot of opportunities to create meaningful peer connections. As someone who’s both a counselor and an educator, that was hard for me to stomach. Still, the support she did have, and the general vibe of acceptance, seemed to land well with her.

And now: high school.

I’ve been scared silly about it—honestly, I think with good reason. Her assigned high school consistently scores poorly. There are limited academic or extracurricular options for students in general, and even fewer for students with intellectual disabilities.

Most students like Moxie are automatically placed in a segregated, Fully Self-Contained class. What I’ve seen from those settings is disheartening. The focus is often on “life skills,” which seems to mean things like picking up trash on campus or coloring worksheets. Many students are visibly bored, disengaged, and, frankly, not treated with respect. It feels more like a care facility than a place for learning or growth.

Moxie will be in General Special Ed again—but there’s still so much we don’t know. Her path forward feels hazy.

One hopeful note: she started a summer bridge program today—something designed to help incoming students get familiar with the high school environment. We’ll see how that goes.

This morning, as I sat at my desk, I was taken back to when I was pregnant with Moxie. I remember the worries, the grief, the not knowing. I remember being afraid she would experience the same pain, isolation and abuse I did, growing up with disabilities. I questioned whether it was right to bring a child with Down syndrome into a world that can be so ableist.

And in that uncertainty while pregnant with her, I found deep comfort in Khalil Gibran’s poem “On Children”:

And a woman who held a babe against her bosom said, Speak to us of Children.And he said:Your children are not your children.They are the sons and daughters of Life’s longing for itself.They come through you but not from you,

Toolbox Tuesday: a tip on using the iPhone built-in transcription app (speech-to-text)

I’m profoundly deaf. I also have ADHD—the kind that makes my brain feel like it’s got tabs open in every room of a house I can’t find my way through.

This combination means I need speech-to-text apps to navigate the world—but also that I often forget to download or open them until I’m already in the thick of needing them. Cue the awkward scramble in a meeting, a restaurant, or a doctor’s office while I fumble through apps that are still stored in the cloud, or try to remember passwords.

So I’m really grateful for one particular thing: native speech-to-text apps. Built right into the phone. No downloads, no digging. Just there, waiting quietly on the sidelines until I need them.

Why Built-In Tools Matter

Accessibility is often treated like an afterthought—something to install, toggle on, or request. But when you’re deaf, and especially when you’re neurodivergent too, the steps between knowing what you need and getting what you need can feel like climbing a mountain in roller skates.

That’s why having speech-to-text tools built into both iPhones and Android phones is a total game-changer. No extra effort, no forgetting. It's just a tool that's ready when I am.

Let’s Talk iPhone: Live Captions

The native - built in - app on the iPhone is called Live Captions. Here’s what I love:

It’s clean—doesn’t cover the whole screen or distract.

You can toggle it up to make the captions bigger (great for those of us who wear readers).

It lives on your phone screen—once enabled, you can slide it out like a drawer anytime.

Here’s how it works:

Go to Settings > Accessibility > Live Captions.

Turn it on.

Customize how it looks (text size, position, background color).

Once enabled, just swipe to access it.

Boom. It’s there. Always. You can press it, resize it, move it to the side—whatever makes it easiest for you. It’s not in your face, but it’s not buried either.

Android Users: Google Live Transcribe

If you're on Android, Google Live Transcribe is your go-to. It’s been around for a while, and for good reason. It works in real time, supports over 80 languages, and you can even use it offline in newer versions.

Here’s why people love it:

It’s free and easy to use.

Accuracy is pretty good—about on par with Apple.

It’s perfect in those moments when you need to hear what someone’s saying right now.

Now, yes, it’s still machine-generated. So sometimes the captions are craptions. But for something that lives in your phone and is free? I'm okay with that.

Accessibility isn’t just about having tools. It’s about having them available. Built-in transcription apps have made my everyday life easier, less stressful, and more connected—and for someone who is both deaf and brain-scattered, that’s no small thing.

If you’re like me—navigating the world with ears and/or brain that don't fit the mold—these little setups can make a big difference. They're not perfect, but they're powerful. And they're already in your pocket.

https://youtube.com/shorts/pP7XB_9asKI

PS. This sounds like an ad, but I swear it wasn't!

Ableism is not just a word; it's an everyday reality.

It's the pervasive discrimination, prejudice, and bias against us disabled individuals. It's the belief - often unspoken - that being non-disabled is better, more normal, or more valuable. Ableism shows up in attitudes, actions, systems, and environments that exclude, dismiss, or devalue our disabled lives.

We’ve been told in a thousand ways that our existence is inconvenient, unworthy, or too much, and it’s easy to turn those messages inward, especially when we've been brought up with them.

Internalized ableism can show up as:

Shame

Self-silencing

Avoiding/denying support because we feel like a burden

Low self esteem

Imposter syndrome

Hypervigilence

Depression and anxiety

Internalized Ableism

It takes time to unlearn internalized ableism, for sure. I’m still trying. A couple of things that help ground me when I am lying awake at night cringing over replays of stuff from the day in my head or feeling shame over responding incorrectly or hearing something wrong are these: my beads and my fingers. 

Simple Tools for Grounding

I carry beads with me and choose a simple phrase to repeat. It might be "I'm okay, I'm okay, I'm okay," or "It's all right, it's all right." The key is simplicity and repetition. When beads aren't available, I use my fingers, pressing into each joint and repeating the mantra.

Breathing for Calm

Another powerful grounding technique I use is breath/finger tracing. I breathe in, pause, and then breathe out, while tracing up and down my fingers and repeat through each finger.

These grounding tools are not cures, but they are small steps towards calm and emotional regulation. I find that when I can be grounded and calm, it's easier for me to resist the cycle of devaluation, easier for me to objectively see the ableism and reach instead towards loving and valuing myself. Exactly as I am.

https://youtube.com/shorts/NfFcotXtX30?si=pUbz5YXNROF1DjXX

This is an interview with Lance Kamaka, a Hawaiian deafblind musician. It is a part of the Cool Cats: Voices from the Disability Community series, in which Meriah interviews cool people from the disability community so you can get to know them.

Lance Kamaka

https://youtu.be/4uDFhlTJ1MA?si=gF-5mXWAz0ibPAEK

The clip that Lance mentioned at the end of his interview, in which he plays Queen Liliuokalani's piano at the Iolani Palace

https://youtube.com/shorts/UHTvoS69cgc?si=n5edgFk-sCwwTwN0

Here is Lance singing in a praise worship with a friend of his:

https://youtu.be/ekSVx4PRNjE?si=uYd86onEb2Z6Syxr

Transcript of Interview:

Lance Cool Cat

Meriah: [00:00:00] I wanted to thank you for meeting with me and for agreeing to be the very first cool cat in the Cool Cat video series, which. Really seeks to introduce interesting people across the disability spectrum, and I ask the same set of questions to everyone and the differences in the responses really emphasize how different we all are and how we.

Meriah: Our perspectives on things and what we enjoy and and all the rest of it is that's all. Okay.

Lance: Sounds good to me.

Meriah: Okay. Thank you. So first of all can you start by introducing yourself?

Lance: Sure. My name is Lance Kamaka. Actually, my whole name is [00:01:00] Lance. Like the night of the round table and Lance Kamaka, my mom named me at that.

Lance: So blame it on my mom. But I prefer people to call me Lance 'cause it sounds more ordinary Hey Lance, some people will call me Lance a lot like my stepdad. Like he's addressing the king or something. I like, one time I told him, bow the knee, and he says, no, I don't bow to anybody.

Lance: Yeah. I have been born blind and as I, when I graduated, I started to lose some hearing. But at that time, only my doctor and my mom knew, and at that time they told me that there was no [00:02:00] cure for my hearing loss. It's sensory neuro. At that time I was in denial, but it was so gradual that.

Lance: Hardly anybody knew. Only, like I said, only my mom and my doctor knew about it. I kept it on the wraps for I say eight to 10 years. Until it became noticeable. And then people started saying, I would try to block my way through by thinking I could hear when I. Here, and people would tell me things like, aren't you paying attention, Uhhuh?

Lance: And I would rather, I was thinking, man, I would rather have a hearing loss than, having a brain loss, not paying attention. So that, and [00:03:00] certain people who persistent. That I try wearing hearing aids. I decided I'm gonna do that. And I was with a a vocational rehab counselor at that time, and she said that I would they would get me one hearing aid.

Lance: Which is not really looking at hindsight. Wasn't a good thing because after all we hear we are two ears. And being blind, I rely so much of my ears not only to hear, but to perceive where I am in relation to where other things are. There's that spatial awareness of direction. So when I got one hearing aid, I only wore once. I put it in the drawer and that was it. Then my counselor, why did she only

Meriah: give you one? I'm [00:04:00] sorry? Was there a reason she only gave you one? Why did she only give you one?

Lance: I don't know. I'm not sure if it was just like try out kind of thing.

Lance: I don't know. But then she kept asking me, have you been using your hearing aid? I said, I can't. I can't because when I wear one hearing aid, it throws me off. I get disoriented. And so she said would it do better if we get two, another one? I say, yes. Try that. So I got another hearing aid.

Lance: And then I decided I'm gonna get used to the hearing aids because after all, our brain adapts to what we hear. So I decided, okay, I'm gonna wear these two hearing aids as long as I can all day. Every day. Except when I take a shower or [00:05:00] go to sleep.