Video Transcript

Eric Harris:
Hey, everyone welcome back to The Game Plan. My name is Eric Harris and I am the host of the show. We had two amazing leaders in the intellectual and developmental disabilities community. Two women from California who are really, in the forefront of advocacy and doing amazing work for, the disability community. First, we have Lisa Cooley, who is a self-advocate leader, who has been in all types of spaces, both as a self-advocate, advocate for others in the community. A leader speaking with and communicating with elected officials. But Lisa Cooley has been, really, at the forefront of, of leadership for, folks in the intellectual and developmental disabilities community. Likewise, we have Marisa Hamamoto, who is the founder of Infinite Flow Dance. She also, identifies as someone who has an intellectual developmental disability and found out about her disabilities later in life. But she has been really an incredible leader. Especially when it comes to working with both folks with and without disabilities. Teaching them how to dance, express themselves, kind of being involved in art and film. And she, she really gets into it, with, with some amazing conversation today. So we're really glad that you are checking out the show and hope you all enjoy it.

[Triumphant Instrumental Music]

Voiceover:
The Game Plan is a production of Disability Rights California, a space to strategize, organize, and posterize for the future of the disability rights movement. For more information on our work, please visit us at disabilityrightsca.org.

Eric:
Hello everyone and welcome back to The Game Plan with Disability Rights California. My name is Eric Harris and I am the Associate Executive Director of External Affairs at Disability Rights California. And today we have an amazing guest, a leader and advocate, and just an incredible leader in the disability movement and in our community. Lisa Cooley, who, I actually met during my initial process of joining DRC during my interview process and, it's wonderful to have you, Lisa.

Lisa Cooley:
It's it's great to be with everyone and thank you for the opportunity to be interviewed today.

Eric:
Absolutely. You know, what was your experience with disability? Either for yourself or for others that you were around. What was your what was your experience of disability?

Lisa:
Growing up with a disability was challenging at times. Not because, my disability itself with is cerebral palsy, but because of having access to things like free and appropriate education, at least at first. And then as I grew up and went to middle school and high school it was mostly dealing with accessibility issues. Because because I grew up and went to high school before the ADA was even a thing. In the mid 80s through late 80s and early 90s.

Eric:
Wow and it's interesting because and you've talked about this before that, you know, having a disability itself is not necessarily an issue or a bad thing or or a so-called, you know, challenge as, as other folks might say. But it's how the services and the others around you, react to your disability, making sure that you have the accommodations that you need. What was that like, as you were in school and kind of growing up? You said it was before the ADA, but how was it making sure that you had, you know, what you needed to have?

Lisa:
My my mother was and still is my biggest advocate. But over the years, I learned how to advocate for myself and what I needed related to my education, especially after high school and going to college.

Eric:
Wow yeah, no that's that's very similar to a lot of us with disabilities, especially if we were born with our disabilities, our parents become our biggest advocate and kind of had the baton off to us to be our own advocates and our own, leaders in that way. You have served, in the State Council on Developmental Disabilities. You were the vice chair. You worked very closely with, the governor, with state government, policymakers, policy advocates. As we enter the last year of, this governor, Governor Newsom's last, year in office as a as governor of California, what's your assessment of how disability rights have been addressed, over the last several years under his administration? Just from your opinion.

Lisa:
I think that one part of disability advocacy for the Newsom administration, even though the administration is attempting to address that, is the lack of consistent employment for people who have not only IDD but also other combinations of disabilities. For the last, I would say, maybe 7 or 8 years, we've all talked about the need for people who have disabilities, who want to work, to be able to work, but as far as I know, the numbers of employment for people who have disabilities hasn't increased as fast as it should have increased.

Eric:
And especially I mean you know this, California is the birthplace of the disability movement. And many would think that if you're the birthplace of the disability movement that you would be leading on a lot of these issues. And employment has certainly been a space where California is not leading, when it comes to employment for disabled folks, generally, people with IDD, people in state government, we're just lagging behind. What message would you want to send to the next governor when it comes to some of these issues?

Lisa:
I would say do more than talk about disability employment, put appropriate actions, steps in place to increase numbers related to disability employment, and make it easier for people who have disabilities, and especially disabilities, that require some sort of, home care for people who have disabilities. Make home care not only a benefit that person, but people with disabilities can benefit from in their own personal lives. But make home care a benefit that they can use more in their professional lives if they need to, so they can not only have employment, but maintain whatever employment is appropriate for them.

Eric:
That's right. Next question I have for you. Independent living, you mentioned it and the independent living movement is as important to disabled people and to our collective advocacy as anything the that we have. There is a national movement, with independent living, there is a statewide movement with independent living. But what is independent living itself actually mean to you? And for people who are outside of the independent living movement, how would you best describe it?

Lisa:
For me, independent living means that people are not completely independent. If they have a disability, they're more interdependent on others, as well as different systems that support them throughout their lifespan.

Eric:
Absolutely, and have you, you've done work with local independent living centers, Resources for Independent Living, California Foundation for Independent Living Centers and others. What would you say, has been your experience working with them, and how did they help people directly?

Lisa:
They help people directly by giving them resources and teaching them how to get connected to individual services and doing systems advocacy. I think that they need to do more outreach to not only seniors who have disabilities, but also young people that are coming up in the disability movement.

Eric:
No, that's exactly right.

Lisa:
Who need different supports than somebody who's a senior.

Eric:
That's right, that's right. Yeah, right, disability is throughout the lifespan, right? You can have a disability as a young child. You can have a disability as a young adult, adult, older adult, senior citizen all the way through life. So it's really crucial that our independent living centers are thinking about the complete spectrum of disability with throughout the lifespan. You've talked a little.

Lisa:
And you could acquire disability because of accidents or injuries.

Eric:
That's right. That's right.

Lisa:
or illnesses.

Eric:
That's right. Any time, anybody, it's a fully inclusive opportunity to to to get a disability at any point. I think that, you know, we get opportunities and I know you could talk about opportunities that you've gotten to speak, in different settings, whether it's speaking to students or speaking to folks in different professions. One of the things that I always jump at when there's an opportunity to do so is speaking to medical students.

Lisa:
Yes, I've done that.

Eric:
Yeah it's exactly it's important. It is very, very important. And I know you could talk about the message that you try to send to medical students. And, you know, it's something that they tend to really appreciate. They appreciate having a disabled person come and tell them about the experiences that we've had and why it's important to really understand disability at some of the ranges of disabilities that we all have.

Lisa:
Another problem that I tend to have with them, with the medical field and disability is that when they hear that I have cerebral palsy, there seems to be, at least to me, a sort of checklist that goes off in people's head. And if I don't fit everything that's on their mental checklist, they don't know how to handle it professionally.

Eric:
And when that happens, Lisa, how comfortable are you, giving direct feedback? Because I know a lot of folks when they get in these sorts of circumstances, whether it's being in front of medical professionals or others. You can be a little nervous and it could be a little, uncomfortable to push back. But what has your experience been like and how comfortable are you, like being critical if a doctor or a medical professional is not treating you with the level of respect that you feel you need?

Lisa:
A long time ago, as as a kid, I wasn't very comfortable telling them how they should treat me in a medical setting. But as I've gotten older, you learned more about the process of becoming a doctor and my disability related needs, I tend this to speak up more about my needs at appointments with some with someone there with me, to support me.

Eric:
That's really crucial, Lisa and I'm glad you pointed that out. That while you certainly have the independence to be able to speak out and let folks know about your, your experience or your thoughts relating to what medical professionals are telling you, it is nice to have additional support. You know, folks, somebody who so-called has your back, somebody who is who is, you know, making sure that that everything is, is being taken care of properly. So I really appreciate you bringing that up with employment, education, housing, transportation, all the the points that you've been bringing up. I really hope that policymakers, elected officials, leaders in our state and in, throughout the country really take the time to listen to and work work directly with disabled people, because we are the ones with the experience.

Lisa:
And policymakers not only need to listen to us as people with disabilities, but they also need to listen to our family members and friends so they're able to speak on behalf of their siblings or other family members who might not have the ability to publicly and openly speak the way I'm speaking today to you, and your audience.

Eric:
Now, that's exactly right, because it's interesting. I mean, I've always felt strongly that, that it's not just Eric or Lisa who is a part of the disability community, if you really think about it, our families have been included as experiencing what a disabled person, you know, goes through often, especially when we're talking about accommodations that are needed, thinking about discrimination that we've all experienced. And it's really, really important that we have family voices, leaders, parents, others who who can give a real thoughtful, experience and position on, on a variety of issues, understanding that, no, they don't have a disability. They're not speaking for disabled people, but their experiences and, connection to disability is really, really crucial. What, is there a movie or a TV show or a book that you're really excited about right now, or that really fits the moment that you would recommend people take a look at or check out?

Lisa:
I love any kind of awards show on TV. I love, different Olympic sports like figure skating and swimming.

Eric:
Oh [interested].

Lisa:
And any kind of paralympic type sports.

Eric:
Hey, that's right. No, that's a that's a good one, Lisa. And as you probably know, the Olympics and Paralympics for the Winter Games are going to be starting here soon. So I know you mentioned figure skating. Are there any other winter sports that you're particularly looking forward to checking out?

Lisa:
I love the what do you call that? That sledding sport?

Eric:
Oh, so there's there's a lot of different ones. But are you talking about bobsledding?

Lisa:
Yeah, where where people scrunch themselves and go go down a long chute like thing.

Eric:
That's right, that's right. No, it's a I always appreciate sports that I know I would have no business getting involved in, or I would be way too afraid to to try out because,

[Eric laughs]

doing bobsledding seems like one of those sports where you have to be very brave, courageous, and you just have to get in it and do it, because they go so fast and it's so intense, that that it would just, it would put a lot of, a lot of fear in me. But but I can't wait to watch that as well. So it's wonderful to to talk to you, Lisa. The final question that I have for you, what is your game plan for 2026? What is, what are some of the things that, whether it's involved in advocacy or any other part of, of your journey, what is what are the things that you're really looking forward to getting involved in?

Lisa:
I would like to do more housing advocacy, more advocacy related to health care and disability, and more advocacy related to aging.

Eric:
Now I appreciate that, Lisa. And I think you know, something that Disability Rights California is trying to do on that last point is really show the deep connection between aging and disability. I think for many years and you can speak to this as a long time advocate here in California. We almost separated, you know, having disability on this side and having aging on that side and and not recognizing or at least not acting on "Hey, a lot of the folks who have, disabilities, age into other disabilities" or "a lot of older adults obtain disabilities as they get older." So just really important kind of bringing that, that connection of disability and aging. And I think that's something we really want to take seriously in 2026.

Lisa:
I think, I think both of our service systems need to do more collaboration.

Eric:
That's exactly right, that's exactly right.

Lisa:
Because like you said earlier, aging and disability are not always separate.

Eric:
That's right, that's right. Well, Lisa, I really appreciate your time. And thank you so much for joining us here

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at The Game Plan with Disability Rights California.

Lisa:
Thank you for the opportunity.

Eric:
Absolutely. Have a good one.

Lisa:
You too.

Eric:
We are super excited to welcome a very special guest, Marisa Hamamoto from Los Angeles. Welcome, Marisa.

Marisa Hamamoto:
Hello, Eric. Thank you so much for having me. We, I feel like I'm talking to a sibling right now.

[Marisa laughs and triumphant music fades out]

Eric:
That's right, that's right. No. It's been wonderful to work with you and connect with you. I feel like it's been several years now of us collaborating and connecting and just lifting each other up on all different types of platforms and, and and all of those sorts of things. So it's so wonderful to have you as a guest on the show.

Marisa:
Yes, thank you so much for having me.

Eric:
Absolutely. So as a as a starting point with The Game Plan, we always like to find out about folks disability journey. I know everybody's journey is completely different. So anything you want to put out there, anything you want to say about your own disability journey?

Marisa:
Sure, absolutely. So when I was 24, in college, I had a spinal stroke that initially paralyzed me from the neck down. My physical recovery came pretty fast I would say. After being in the hospital for about a couple months, I did walk out. But there is still some paralysis in my body, especially on the left side. So I have a left hand that is slightly, paralyzed. My left side is a little bit numb. Some days it's a little bit more numb than others. But I don't really consider myself to have a physical disability. I do feel my paralysis, out of. I do feel my paralysis when I dance, which is the interesting thing. It's almost like a reminder of who I am and where I came from. So I kind of don't really see it as like a hindrance, but rather as, like a reminder of who I am and what I stand for.

And then in terms of, my other disability, I was diagnosed with autism, three and a half years ago. So I guess this is a disability that I was born with that I wish I had known about growing up, but, I found out that I was autistic three and a half years ago. And it was through being in the disability community for up to then about six years, seven years of leading Infinite Flow Dance, learning about different disabilities, both apparent and not apparent, and learning about neurodivergence. Full transparency, I didn't, neurodivergent, neurodiversity were not words in my vocabulary when I started Infinite Flow in 2015. So it was through the community organically educating me that I started to question my own neurodivergence, it led to actually also getting a close member of my family diagnosed with autism. And it was actually through those processes that I started to question my own neurodivergence. So I got assessed and, yes, I'm autistic. And I'll just say that the diagnosis gave me more clarity than confusion.

Eric:
Man, I feel you on that. That's really interesting. And I think that for a lot of us with disabilities, you know, we if we aren't around it all the time, there's no way that we would have a real, full understanding of disability. And so to hear your experience of, you know, being with part of the disability community, being around disabled people, giving you some additional clarity, and then of course, being diagnosed, it's really helpful to, I think, the folks who are tuning in because the disability journey can be different for everybody. And, and I think that the more information that we can put out there, the more folks, you know, can find out about their own lived experience or the lived experience, of others as well. So I really appreciate that point. I think that neurodivergence of course, can have such an impact on your understanding and perception of, like, school and like how you, how you learn what you pick up. And you went, you know, through obviously K through 12 to college, etc..Was there at any, at any point during that experience, did you kind of wonder like, you know, are things more difficult, anything like that that you want to shed some light on?

Marisa:
You know, obviously I didn't know the word stimming until like in the last few years, but in retrospect, some of my stems that I grew up with is that, this is going to sound gross, but I picked on my hangnails all the time till they were bloody. That was one. Number two, I folded origami like any time I got a little bit like anxious or just want, just like, you know, felt like I needed to fill a void. I would take like pieces of paper, any paper that I can find including candy wrappers and notebook paper and magazine paper, anything, any paper that I can find. And I would just start folding origami.

Eric:
Wow, fascinating.

Marisa:
Now origami [Marisa laughs] though after a while, you know I would fold origami at recess because I would, I would be playing alone at times. [Eric laughs] Not always, but sometimes when I'm playing I would just start folding origami just to fill the void just so that I don't feel alone. But there was, I think this was in third grade, in which some kids started to be curious about origami, and they wanted to learn how to fold. So, yes, I remember teaching how to fold origami. I remember like, it was just a way to kind of make friends and make camaraderie with people. And so if you do go on to my Instagram, I've actually brought origami back into kind of like my quote unquote personal brand. So I, you do see me folding origami quite often on social media right now in my videos. And, when I was in freshman, freshman, high school, freshman high school year, toward the end of the year, there was a group assignment in social studies where basically we were tasked to do something to to complete a project as a group.

And I remember being in this group, and my one and only kind of school friend was also in the group. And there's maybe like, I don't know, six, six of us, something like that. And I remember we had a whole week to do this assignment, and no one was doing anything like nobody was contributing. Nobody was like starting a conversation. This is 19 like late 90s. And so email was still not a thing. We had each other's phone numbers, that's no cell phones. But anyways, there was just no, like, communication about how we're going to finish finish this assignment. Three days, four days passed by. Nobody's doing anything. So I just was like, hey, you all, I'm just going to complete this assignment because I don't want to I don't want to get a bad grade. And this is like, this is like honors social studies. You, you know, so I just went ahead and did the assignment. [Eric laughs] And not only that, I went like far above and beyond and made this creative thing. I can't remember what the assignment was about. And then when presentation day came, you know, the whole group came about.But I was I was the person that presented everything, and I made it look seem like everybody contributed. Well, what I didn't know was that it was going to be graded not by the teacher, but by the people in the group. So what happened was I gave everyone an A minus, okay. Just feeling that, well, I kind of did this whole thing of I, but I don't want to be mean.

Eric:
Right, right, right.

Marisa:
Everybody else in the group gave me an F, as senior F.

Eric:
What?

Marisa:
Yeah and then even the one and only school friend I had, who knows that I did that whole assignment, got gave me like a B minus. I think she didn't want to give me a C, but she gave me a B minus. And so basically out of all the group members, I got the lowest grade. And this did not seem right. So and, but also it was just this massive social embarrassment. And but the injustice there was just really big. And so I was like, mom, my mom doesn't speak English, but I said, mom, I need you to come to school because this is wrong, and somehow we've got to correct this. I'll do the talking and [Marisa laughs] you just have to be there, you know, just as a parent, because usually a parent would probably speak up at this moment, but mom doesn't speak English. And so I called my mom and my mom came to came to school with me. Anyways, long story short, the results did not change and not, change the grade saying that. Well, part of the lesson of this assignment was to learn how to work as a team.

Eric:
Wow.

Marisa:
Well, why did she not mention that at the top of the assignment? So anyways, long story short, maybe for a neurotypical child at this point they would just learn.

Eric:
Right.

Marisa:
I just carry on. But in my case, I just said I'm not returning to school anymore. So I didn't return to school. And I said, you know what? I don't want any friends because friends are just going to betray me. So and so. Yeah. So after that, I didn't return to school, and then I homeschooled for a whole year after that. But when I told the story to, the psychologist that assessed me for neurodivergent, four, three and a half years ago, this was a pretty big factor. In kind of her assessment.

Infinite Flow today is a disability led, cross disability represented dance company, or I should say professional dance company, a nonprofit with a mission to advance disability inclusion and reimagine possibilities one dance at a time. Were recording this at a very interesting time. In which in which, yes, I am working on the evolution and Infinite flow Dance 2.0 right now, but, up until now, we have as a professional dance troupe that has both dancers with apparent and non apparent disabilities. We have performed over 400 times everything from school assemblies, community festivals to large corporate events, global events. We are we we consider the internet to also be the stage. So we've created some fascinating dance films and content which have reached over 100 million people with, school assemblies are a very, very big part of the work that we do in our hearts. And so we've served I think we're like at 35,000 youth, across school, you know, through school assembly programs and I'll just say this much, you know, my my background is in concert dance.

One of the important things about starting any kind of social enterprise, social impact, nonprofit, you it's it's really about better understanding the problem, not just the solution, but you got to better understand the problem first to get to the solution. And I'll just say, in the ten, ten years, every single year, I learn something new about the real problem. And the real problem when you start peeling the onion one layer at a time, the problem that you saw was more and more systemic and more and more like it's it's not, you know, it's it wasn't, like you know I started Infinite Flow with disabled people don't have equal access to dance. That's where it started.

Eric:
Right, right.

Marisa:
But when you start, when I started asking why and why and why and why and why, there was so much more and so much deeper and so much of this is so ingrained in our society that, like, we don't even see it as a problem [Marisa laughs]

Eric:
Right.

Marisa:
Like, and I mean, and just so I, you know, again, I'm still at the time of recording this podcast, I am still finding the words to articulate all of this.

Eric:
Right.

Marisa:
But I'll just say that, like the stigma that's related to disability, that's, it's it's very, very deep on where that even comes from.

Eric:
Yeah. And I will say, you know, as somebody who's been a part of disability spaces for a really long time, something that always I appreciate and it jumps out and I'd love for you to just mention anything or say anything about what this part of the experience has been like. But having dancers who are wheelchair users and non wheelchair users means a lot to so many folks who are wheelchair users, who either assume that I'll never really be able to dance with, you know, non wheelchair users in a significant way. I'll have to figure out how to dance with other wheelchair users or it's going to be awkward. But what would you say to that as far as that part of what you do, being such a major part.

Marisa:
I know that with a disability, whether you can see it or not comes with challenges. We need to acknowledge that. However, when I'm in the studio, you know, I let go of that. And I also do my best to the dancers that I'm working with to also let go of that. What if we used your wheelchair, Eric, as a tool for creativity? Because guess what, there's some stuff that you can do as a wheelchair user that I can't do on feet. So that's cool stuff.

Eric:
Yeah. Yeah.

Marisa:
You know, and so, you know, you know, I'm not I'm not a proponent of toxic positivity either. However, like, even if it's for that one hour in the dance studio, can we think of our differences and disabilities as sources of creativity and power and instead of thinking of them as a hindrance?

Eric:
Yeah.

Marisa:
So, yeah. So that's where I start from on a more tactical, tangible level. I'll just say this much. Out of the few things that are newly being implemented, one of the things that is much needed is, well two things, we need more disabled dance teachers. If we're talking about dance tactically here, and we need dance educators to be educated on how to integrate disabled students, whether it's kids or adults. So I am piloting a accessible dance certification program this year.

Eric:
Wow.

Marisa:
And again, tactical. It's dance, you know, specifically dance and movement. And a lot of this, like, I, I'm going to work on this over a, a sprinted week or so, but, but with some of the notes that I've started to write down and what the certifications can include, a lot of it is mindset. It's not even like a, it's not even a hey, when when you have a student like this, you need to do this or that, because guess what? Like, you know this, like [Marisa laughs] you'd let's say you have six students with autism. They're all going to have different access needs and learning needs. So you can't put like a diagnoses in a box when you're a teacher either. So it's more like, okay, when you do have that student with a different steps in your class, what what's your process to make sure that you that they're able to participate? Like what is that process look like?

Eric:
The last two questions that I have for you. First one is, is there something in pop culture movie, book, TV show, music, song that you're just really excited about right now that you would encourage folks who are tuning in to check out?

Marisa:
Oh, but okay, Barbie, there is an autistic Barbie now

Eric:
Yes!

Marisa:
That was created in collaboration with the, Autism Self-Advocacy Network.

Eric:
Yes!

Marisa:
Which, you know, I have much respect for. I've never been involved with them yet, but I do get their newsletters, I do read their newsletters, and I know that it is autism, it's an autism led organization.

Eric:
Yes!

Marisa:
And and so, yeah autistic Barbie.

Eric:
So last question for you. What is your game plan for 2026? What are you most looking forward to? I know you've talked about some of the changes and some of the shifts that that Infinite Flows is looking at, but what what are you kind of most excited about 2026 game plan going forward?

Marisa:
That is to be revealed. So I don't want to talk about it too much right now,

Eric:
[Eric laughs] Absolutely.

Marisa:
but we're celebrating ten years and we have some cool things going on.

Eric:
Absolutely. Now we really appreciate your time, Marisa. We'll definitely be uplifting Infinite Flow on Disability Rights California's social media and share it out with as many folks as we can so that people can support what you do. And, and get excited about all that Infinite Flow is doing throughout throughout California, throughout the country.

Marisa:
Okay. Yeah. Thank you. And and thank you so much, DRC. And, you, Eric, for inviting me on to this podcast. I feel like DRC does so much for the community. So thank you. And you do a lot for the community too. So thank you. And I'm sure we will come back, you know, together also working on some legislation hopefully soon.

Eric:
Absolutely. Thank you so much Marisa.

Marisa:
Thank you Eric!

[Triumphant music plays]

This has been the Game Plan a production of Disability Rights. California, please like subscribe, comment on the platform of your choice. See you next time.