Celebrate GAAD with Actor Mickey Rowe and Disability Rights Advocate Michael Agyin [TRANSCRIPT]
SAMANTHA SAULD: Hi, everyone. Thanks for joining us today to celebrate Global Accessibility Awareness Day. I’m Samantha Sauld from 3Play Media, and I’ll be moderating. Today, I’m joined by actor Mickey Rowe and disability advocate Mikey Agyin, who will both be sharing their amazing stories and why accessibility is more important than ever before.
So first up, we’ll be hearing from Mickey Rowe. Mickey was the first autistic actor to play Christopher Boone, the lead role in the Tony award-winning play The Curious Incident of the Dog in the Night-Time. He has also appeared as the title role in the Tony award-winning play, Amadeus.
He’s the founding artistic director of National Disability Theater, which works in partnership with Tony award-winning companies, such as La Jolla Playhouse in San Diego and the Goodman Theater in Chicago. Mickey now teaches best practices and is changing the industries in which he works. We can’t wait to hear more of his story. Please join me in welcoming Mickey.
MICKEY ROWE: Hi. It is such an honor to be here today, and such an honor to be here today at 3Play Media for Global Accessibility Awareness Day. My name is Mickey. My pronouns are he/him. If anyone here is blind or low vision, know that I am a white man with light brown, thinning hair.
I’m wearing a white v-neck shirt and a gray blazer with a blue flower on it. And I was so fortunate to get to be the first autistic actor to play Christopher Boone in the Tony award-winning play, The Curious Incident of the Dog in the Night-Time, to get to be one of the first autistic actors to get to play any autistic character, and to get to win the Christopher Reeve Award at the Media Access Awards.
I was the founding artistic director of National Disability Theater, and later this year– or I also got the honor of playing Wolfgang Amadeus Mozart in the Tony award-winning play, Amadeus. Now, so you might ask yourself, what is an autistic person doing working in language-based theater companies?
I often ask myself that question. But I believe in theater, my weakness is one of my strengths. If you see me walking down the street, I most likely have headphones on. I nearly always wear a blue t-shirt, v-neck, so that nothing touches my neck. I was late to speak, but I invented my own incredibly detailed sign language to communicate.
This wasn’t, obviously, ASL or any actual legitimate sign language. This was just me creating my own gestures to try to find a way to communicate. I had speech therapy all through elementary school, occupational therapy through middle school, and was in special ed for part of the day through high school. And I was non-vocal through my earliest years.
And it is such a damaging misconception that non-vocal autistic people don’t speak, simply because they are not smart enough to speak, right? We live in an inherently ableist society that uses the word “dumb” interchangeably with the word “stupid.”
But when you really take a moment to think critically about what society tells you is acceptable, you realize that just as blind means cannot see and deaf means cannot hear, dumb actually means cannot speak. I’m here to tell you that although I couldn’t speak, I was certainly not stupid, and I still could understand everything that everyone else was saying.
And this is the case for many non-vocal autistic people. And the medical term for this is called aphasia, and basically, it means that you understand what’s being said to you, and you know what you want to say, but you’re unable to say it. Somewhere between your brain and your mouth, the train just goes off the rails. It’s not that mysterious, and it’s not even limited to autistic people. If anyone, autistic or not, sustains a concussion that’s big enough, they also may show signs of aphasia.
But if you put a communication application, an accommodation for Global Accommodation Accessibility Awareness Day, even if you put a keyboard in front of a non-vocal autistic person, chances are they may end up with time communicating more eloquent and perceptive thoughts than you, because I think it’s funny that sometimes the less we speak and the more we observe and listen, the more we actually have to say and productively contribute sometimes.
Now, I know you all don’t think that Stephen Hawking is stupid, even though he could only talk using the assistance of a machine. Of course you don’t, because you recognize that he can be one of the greatest intellects in modern history while also being unable to talk without an assistive device. So please just extend that same understanding to autistic people with aphasia.
So out of this determination to be able to communicate with people other than my family, I created my own incredibly detailed sign language. And again, this wasn’t real ASL, just a made up sign language.
And obviously, this wasn’t ideal, but it at least allowed me to scrape by communicating with my immediate family, who, despite any frustrations over my inability to talk, were really familiar with my signs. Once I signed for an ice cream cone, and as soon as I got the ice cream cone, I promptly squished it into my grandma’s face, my Geema’s face, and this was my attempt at sharing it with her.
And stories like that are sort of a common thread throughout my life– reaching out for human connection, trying really hard to make a moment of friendship or love, and not quite pulling it off. My made up sign language was a desperate reach to connect with the world, but I still remained kind of cut off from communication with people outside of my family. So in school, I had a lot of speech therapy so that I could communicate with more people.
But being on the spectrum, growing up through high school, I had no friends. I spent my lunch break and recesses pacing the hallways, not really knowing who to talk to, how to talk to them, or how to make a friend. I was completely alone in my own head, but my grandmother had a subscription to Seattle Children’s Theater, a professional theater for young audiences. And when I was sitting in the dark theater watching a show, that was when I felt seen. I felt silently heard, and, really, sitting in that audience was the one time I felt understood.
So although I had an IEP in school and spent much of the day in special ed all through high school and speech therapy and occupational therapy, my parents decided not to tell me that I was on the autism spectrum. And they kept it a secret from me, and told me that I was just in special ed, and getting all of these things because of my bad eyesight.
They did this because they were scared. They didn’t have a community like this one here to tell them that they didn’t have to be scared, that disability comes with both challenges and strengths. Disability gained to borrow a term from the deaf community. They didn’t know that knowledge about yourself is power and that there is a place for you in this community.
So I’m also legally blind, visually impaired. Autism is sometimes linked with vision problems, and that means I can’t perform very well in cold readings, which is how actors are usually auditioned or interviewed. If given a few days before an audition, I always memorize my sides so that I don’t have to read them off of the page. I enlarge scripts so that they are twice as big, just like all of my textbooks and tests were enlarged to 18-point font or large print textbooks when I was in school.
I often secretly record the first read-through of a play on my cell phone during the first day of rehearsal, hidden in my pocket, because it’s against the union rules to record the show. But I record the first read-through of the play on my cell phone so that I can learn my lines and study the script by listening to it, kind of like a book on tape, because my eyes give out after about 15 minutes of looking at a page. But because I know this, I get off book darn fast, often before the first rehearsal.
So I think to be successful, we have to learn how to celebrate our strengths while also acknowledging the challenges. This is my goal for everyone today. Celebrate the strengths, while learning about and acknowledging the challenges. When I was advocating for autistic actors to be auditioned for the role of Christopher, I was told so many times that it would not be possible for an autistic actor like myself to play Christopher.
I was told to my face that it was a big show with big words, that it was a hard role. I was told many times that the reason no autistic actors had ever previously been cast in the role on Broadway, or in the West End, or anywhere that the play had been before was simply because there were no talented autistic actors. I was told autistic people don’t feel emotion, and so they can’t be actors, good actors.
This is a lie. This is such a myth, and it is damaging. I am an autistic actor, who has been told to my face the exact same words that Sia tweeted to the autistic community, the singer, Sia, tweeted to the autistic community earlier this year in response to the controversy around her Golden Globe-nominated movie, Music. The words Sia tweeted were, “Maybe you’re just not a good actor.”
And I’m not alone. There are so many incredibly talented autistic actors, but why take my word for it? After being cast in Curious Incident, the same people who told me that I couldn’t– or that it couldn’t or even shouldn’t be done, those people who said it couldn’t be done changed their minds.
When I was playing the lead role in Curious Incident, the New York Times said, “Mr. Rowe plays Christopher with an agile grace, an impish humor, and a humanizing restraint. On Broadway, where the Tony award-winning hit ran eight times a week with two actors alternating the demanding role of Christopher, a 15-year-old boy with autism, Mr. Rowe, thought to be the first openly autistic actor to play the role, does all nine shows a week.”
And I thought it was pretty cool that they pointed out that on Broadway, there were two actors doing– splitting eight shows a week. And yet now that they’ve cast an autistic actor, he was able to do all nine shows a week.
When I got to play the title character in the Tony award-winning play, Amadeus, the Wall Street Journal said, “Buy your tickets now. Then come back and finish reading this review. Mickey Rowe giving a madly zany performance as Mozart, he reminded me at times of the young Jerry Lewis, a triumphant demonstration, artistically successful in every way.” And they weren’t alone. The reviews kept coming.
And I think that this is because I am a better actor because of, not in spite of my autism. Being autistic really helped me in playing Christopher and in acting in theater in general in a lot of ways, too. Autistics use scripts every single day. So we use scripts for situations that we can predict the outcome of, and we stick to those scripts. My job, as an autistic person, is to make you think that I’m coming up with the words on the spot, that this is spontaneous, that this conversation is happening for the very first time in my life.
And this is also my job when I’m on stage as an actor. So for instance, at a coffee shop, I might say, hi, how are you doing today? I smile, and then I say, can I please have a small coffee? Thank you so much. And then if it seems like more conversation is needed, I can ask, has it been busy today? Then regardless of what the barista says, if the barista says, yes, it’s been busy, or, no, it’s been slow, I can then say, oh, well, do you like it better when it’s busy or when it’s slow? Have a great rest of your day.
Always stick to the script. It makes things infinitely easier. Or playing Edmund in King Lear– wherefore should I stand in a plague of customs and permit the curiosity of nations to deprive me? When my dimensions are as well compact, my mind as generous, and my shape as true, it’s really no different. They’re lines that I’ve learned that I say often, but I’m making you believe that they’re mine particular to this specific moment.
OK, so Christopher does a lot of stimming in the show, as well. This is the kind of hand flapping, rocking, or tapping movements that are often associated with autism. And the director, Risa Brainin, and I got to work together to take the stims that I already naturally did and modify those natural stims so that they could be more easily read on stage and even be used as buttons at the end of a comedic line, or to help give or take focus.
In college, I worked for four years basically doing nothing but trying to get rid of all the tension in my hands, so I could be more castable. I was told that if I didn’t get rid of all the tension in my hands, that I would never be able to really work in theater as an actor. And in Curious Incident, I got to forget all about that and let the tension come back in a really, really easy, comfortable way.
I got to be myself. There are so many reasons why I should never be an actor, but acting is a dichotomy, a tension between what’s safe and dangerous, what’s known and unknown, what’s mundane and what’s exciting. I put my dichotomies to work for me. I think it is– being a good actor is about being in control so the audience trusts you to lead them, and then being vulnerable and letting the audience see your soul. And I think the skills, study, and training help create the trust, but the challenges, the disabilities, they help create the vulnerability, because– and you need them both as an autistic actor.
As an autistic person, I felt vulnerable every single day of my life, so to be vulnerable on stage is no big deal. With autism comes a new way of thinking, a fresh eye, a fresh mind, literally a completely different wiring of the brain. I mean, who wouldn’t want to hire that into their organization?
But at the same time, I know what it’s like to be really good at something and still overlooked simply because of stigma and bias. Being in front of an audience of 500 or 5,000 people is really easy for me, because the roles are really clear, logical, and laid out. I’m on stage. You’re sitting in the seats watching me. I’m playing a character, and that is what you want, expect, and are paying for. The conversations are scripted and much better written than the conversations in my real life.
On the street is where conversations are scary. Those roles aren’t as clear. I mean, sure, there are a lot of things working against me at any given time. For example, 85% of college graduates on the autism spectrum are unemployed. I’m going to repeat that again, because I think it is so important and so maddening. 85% of college graduates on the autism spectrum are unemployed.
Now, as all of you in this virtual room already know, this is not because we are less capable, but largely because of social stigma, a lack of accommodations, and the expectations that others have before ever even working with us. It is so awesome that now. Really and truly, thanks to accommodations that have been made more accessible and possible by 3Play Media and other organizations, theaters are now talking about how to allow us to be audience members through things like sensory friendly performances, through CART services, captions, translators, and audio descriptions.
But that is not enough. With 1 in every 68 Americans being autistic, 1 in every 68, if you are doing a play that in any way involves autism. Or a TV show. Or a movie. Or story– I don’t care– then you’d better be casting an autistic actor, or hiring an autistic writer or director, because disability is still not often thought about when we talk about diversity.
And that needs to change, because we don’t just want to be audience members. We want to be employed. We want to be active parts of the conversation about autism. We want to help shape the stories about us from the inside, just like any other minority group would want to have a hand in telling the public stories that shape public understanding about their group.
We saw this through the loud response to Sia’s movie, Music, earlier this year. And another– just another fact I want to throw out there. When you turn on the TV or watch movies, 95– this is a study by the Ruderman Family Foundation and the Ford Foundation, both found that 95% of the disabled characters you see on TV or in movies are played by non-disabled actors, which is crazy. 95% of disabled characters are being brought to life by non-disabled actors.
So it’s great to allow autistic people to be audience members, to see theater in ways that we can be audience members, but we are professionals, too, mostly unemployed professionals, but professionals nonetheless. I think young people with disabilities in this country need to see positive role models who will tell them that if you are different, if you access the world differently, if you need special accommodations, then theater needs you, and the world needs you. When we exclude people with disabilities from stories that are entirely about disability, it, unfortunately, doesn’t help to accomplish this.
I think the point of storytelling is to connect us with people we otherwise wouldn’t come in contact with, to bring us life experiences we don’t already have, and that is why diversity in the arts matters. Inclusion in the arts matters, because it leads directly to inclusion in life. If even the TV shows we watch and movies we watch about autism cannot include autistic people thoroughly and directly from the inside, that just means that we have so much more amazing, incredible work still to be done.
As the first actor on the spectrum to get to play Christopher and one of the first actors on the spectrum to get to play any autistic character ever, I got to show all the business leaders that saw the show that they can hire us, that we can do professional work at the highest level, that we get the job done, and that they have no reason to discriminate against developmental disabilities.
There are so many characters with autism, and yet before Curious Incident, none of them were played by an autistic actor or actresses. And there are so many stories about autism, and yet none of them include autistic creatives.
But we here today are changing that. Everyone in this virtual room is a part of making that change. We are making huge strides in disability acceptance, and autism acceptance, and awareness. And that is because of everyone who’s taken the time to even show up to this virtual room today.
So I think because of both state-led COVID triage initiatives and new conversations around vaccine, we’ve really gotten to see, this year, a clear distinction between the social model of disability and the medical model of disability. The medical model of disability is stating that there is something wrong with the disabled person, for example, something wrong with them that needs to be fixed or eliminated.
And the social model, which instead says there is something wrong with society for not accepting people with disabilities, something wrong with society for not prioritizing accessibility and accommodations for people with disability. Society loves to tell us what we disabled people can and cannot do, while, at the same time, making us feel bad for asking for the accommodations we need to be able to perform at our best.
But if there’s one thing COVID has shown us, it is that universal design, universal accessibility helps everyone. We’ve seen this now during the COVID, with more accessible virtual events, like this one. Finally, the public is realizing that universal accessible design may be necessary, may be a requirement for people with disabilities, but it actually helps everyone, right?
Captions, curb cuts, ramps at airports. If you’re watching a video on your phone but you’re on the bus or in the waiting room, those captions help you. You are using the captions, and they’ve helped you. Deaf people and people who are hard of hearing might need those captions, but the captions are actually helping everyone.
Curb cuts– when I’m pushing my children in a stroller on the sidewalk, I use the curb cuts. People who use wheelchairs or mobility devices might need those curb cuts, but when we have those curb cuts, it actually ends up helping everyone. It helps parents who push strollers. I think about ramps at airports that make everyone’s lives so much easier when we are pulling luggage.
So anyway, if there’s one thing that disabled people should take away from this pandemic, it’s that accessibility helps everyone, so we should never feel bad for asking for the accommodations that we need. We shouldn’t listen to what society tells us about what we’re worth, or what we should or should not ask for. Right?
People with disabilities are not burdens, and in fact, people with disabilities are powerful, smart, sexy change makers, and we make everyone’s life easier. When we advocate for the accommodations we need, we are actually making everyone’s life easier, even non-disabled people.
Oh, the final thing I want to say is that to anyone in this room who has disabilities, or is on the spectrum, or deaf, what I ask of you all today is this– be brave. Jump in headfirst, even when you aren’t sure, and be brave enough to advocate for yourself when you need something, or when you need an accommodation. Will you fail? Of course. Will it backfire? Definitely, sometimes. But will it be worth it? Yes.
If I hadn’t been brave and taken leaps I was afraid to take, and advocate for what I needed, I would have never gotten to be on stage in the Curious Incident of the Dog in the Night-Time. So please, be brave, ask for what you need, and trust that sometimes, if you leap, the net will appear. Go be incredible, and more than anything, be you. And thank you for everything each and every one of you have done to support 3Play Media. Thank you so much.
SAMANTHA SAULD: Awesome. Thank you so much. So thank you so much, Mickey, for sharing your inspiring story. We have a couple of questions from the audience before we introduce our next speaker.
MICKEY ROWE: Of course.
SAMANTHA SAULD: The first question is, “Thank you for your beautiful work and sharing your truth. In theater, unexpected things happen all the time. Lines are dropped. Props break, et cetera. How do you prepare or adjust your script?”
MICKEY ROWE: Yeah, that is such a good question. I can share one story of something that happened during Curious Incident. I think what it is is that oftentimes, people worry about autistic people in theater because a lot of people with autism, myself included– I think most people with autism have sensory processing disorder, which means that sometimes unexpected loud noises, or bright lights, or things can really affect autistic people a lot more than they affect non-autistic people.
But because all those things in the play happen in the exact same place every day, it almost feels like you are in control of these things, and you’re a part of the magic. So I would say that, in general, theater shows are actually a lot more consistent than you would expect.
The stage managers time the shows every day on their stopwatch, and if the show even runs maybe three minutes– like if a show ran three minutes longer than usual, a three-hour show, that would be a big deal for a stage manager, and they would come back and maybe not yell at but tell the rest of the cast, hey, you guys, the show is three minutes slow. Pick up your cues.
So I think– one time, though, that something happened different in Curious Incident is there was a– our stage was motorized, so the front half of our stage at one point moved down towards the audience, revealing a big trough, a waist deep trough that went all the way across the stage.
And I was supposed to jump inside, and it was a subway-like– a subway track that I had to find my pet rat in. But one day, I felt the stage just kind of go– bump– and not move at all. And then I see a red light start– like, the red light in the stage manager’s booth just kind of flash a little bit to let me know on stage that something was wrong.
And so I realized, OK, well, I need to do something, because I can’t get into the ditch I’m supposed to get in. But I saw that in front of the stage, between the first row of chairs and the front edge of the stage, there was a trough that kind of looked similar to the trough that would happen on stage, like where the front row of people, audience would put their feet. So I jumped off the front edge of the stage and just did the scene there instead of in the trough I usually would do it in. I hope that makes sense and answers the question.
SAMANTHA SAULD: Awesome. Thank you. The next question is, “At what point in your career in theater did you start gearing your auditions/journey towards opportunities on Broadway?”
MICKEY ROWE: I guess how my story happened is I had a lot of trouble getting cast in theater. I think I’m really good at masking now. I’m really good at passing as neurotypical now so that, hopefully, in a setting like this or if I’m just meeting someone for five minutes in an audition, I don’t think people can tell that I’m on the spectrum now, because I can kind of pretend or hide it for those short times. But I was not good at passing when I just got out of college.
When I first got out of college, I could not pass the way that I can now. And so I think people intuited there was something different about me, but didn’t know what it was, but didn’t like that they didn’t know it, because people are scared of what they don’t understand. So they just felt really uncomfortable with having me in audition rooms and kind of felt uncomfortable with having me around.
So I thought that maybe if I came out openly as being autistic, people would have a box to put me in, maybe have more understanding about what that discomfort was that they were feeling, and maybe it would be easier for them to cast me if they had more– what’s the right word– more context for the fear that they were experiencing. So I did that, came out as being autistic.
It didn’t really work out the way that I’d hoped, but one casting director had just read the play or seen it on the West End in London, the play, The Curious Incident of the Dog in the Night-Time. And she gave me the script for the play, or the book at the time, because the script was not published. But she gave me the book by Mark Haddon and said that I had to read it, that this character was me.
And so I read the play, and then realized that no one’s casting me in non-autistic roles. No one’s casting me in any roles that are not specifically and explicitly autistic, so I should pursue this. So I tried to figure out how to get in touch with the casting director of the show, Curious Incident of the Dog in the Night-Time. The casting directors, especially Broadway casting directors, notoriously don’t want their emails all over the internet, because they would be inundated by thousands and thousands of actors every day who wanted to get cast.
But I found out that the casting director was also the resident casting director at Lincoln Center Theater. This is not where Curious Incident was performing. Separate theater, but he also worked there. His contact information wasn’t on that website either, but so I emailed [email protected], like, the people who sell the tickets. And I just introduced myself and sent them my resume for Curious Incident.
I’m sure they were confused, because they thought, Curious Incident isn’t even playing at our theater. That’s playing at the Barrymore 20 minutes away. But somehow, the email, eventually, three months later, made it to the right person, and they flew me out to audition for shows. And that is sort of how my Curious Incident journey began. I hope that answered the question.
SAMANTHA SAULD: Awesome. Thank you, Mickey. OK, we only have time for one more question, so thank you, everyone, in the chat for providing your questions. The next one is, “What is the industry doing to help increase the number of disabled actors that are, in fact, disabled, deaf, or hard of hearing, et cetera?”
MICKEY ROWE: Yeah, what is the industry doing to increase that percentage I talked about, how 95% of disabled roles are played by non-disabled characters? I would say it’s a mixed bag right now. The big thing that’s happened this year that I’ve seen is all of the big– what would you call them– broadcast, like NBC, CBS, all of those big companies, have been agreeing to audition disabled actors. So they’ve made a pact where they said, OK, we promised that this year, we will audition actors with disabilities.
And I think it’s kind of– from the disabled community, it’s gotten a little bit of a mixed response, because I think we feel like, you know what? That is sort of lip service. You can audition disabled actors and still have no intention of actually casting them. We want to see you actually casting disabled actors in disabled roles. We don’t feel like you agreeing to audition us is enough.
And, frankly, to be honest and frank, it is their legal requirement to audition actors with disabilities. If they did the opposite and said, we are not going to audition any actors with disabilities, that is illegal, against the law, against the Americans with Disabilities Act. So the big thing they’ve done is agree to audition actors, and we’ll see what happens from there.
SAMANTHA SAULD: Thank you. OK, for everyone else that asked questions that we weren’t able to get to, we will record them and pass them along.
MICKEY ROWE: You can also– to interrupt really quickly, you can also follow me. If you want to ask me a question that you didn’t get to ask me, feel free to ask me on my Facebook or Twitter, or my email address is also on my website, mickeyrowe.com, and you are welcome to email me any questions, and I would be thrilled to answer them.
SAMANTHA SAULD: Awesome. Thank you so much.
MICKEY ROWE: Thank you so much.
SAMANTHA SAULD: All right. So up next, I have the pleasure of introducing Mikey Agyin. Mikey Agyin is a deaf and disability rights advocate. Mikey has spent the last five years as a behavioral analyst for deaf youth with autism. He’s also served as a governor appointee to the State Independent Living Council, a volunteer for the California Youth Leadership Forum for Youth with Disabilities, and has served as president of Hear Zero, an African-American deaf advocacy group.
Outside of Mikey’s ongoing work as a deaf and disability rights advocate, he is a runner, a Star Wars enthusiast, an uncle extraordinaire, and friend to many. Thank you for joining us today, Mikey.
INTERPRETER: Well, thank you for having me. First of all, I wanted to say good morning to everyone, and I also wanted to say, happy Disability Accessibility Awareness Day. Yay to everyone for that.
A little bit about who I am– I am deaf. I grew up with not knowing my full identity. I’m deaf, but I didn’t realize I was deaf. My parents are from a country called Ghana in West Africa, and they immigrated here. They had no idea about services and accessibility for people who had disabilities.
So as I was growing up, I didn’t understand who I was. It wasn’t until I attended college that I was able to learn American Sign Language, finally, that I was able to become more colorful, that I saw that the world was more inclusive and more loving, and that I was finally able to have access to people. I was finally able to learn my identity as a person with a disability, as a person who was deaf.
Prior to that, as a youngster growing up, I did wear hearing aids, and they did help some. They did help a little bit. But I attended speech therapy. I was taught how to read lips, and so that was something that was forced on me. I do have the ability to speak, to use my voice. But that using my voice and relying on reading lips, that doesn’t offer me full access to the world. American Sign Language offers me that full access to communication.
Growing up, I didn’t have friends. I was very isolated. I had to read lips. I couldn’t fit in anywhere. It’s very difficult to read lips. I was around a lot of hearing people, and so I didn’t know anyone deaf. There was no one who signed. There was no one who was like me. And again, until I went to college, that’s the first time that I was able to finally better understand who I was as a person who was deaf. I was able to find my identity, have access to a language in American Sign Language, and not be forced to try to fit into English, which didn’t work, because I don’t have that auditory access.
I received supports for myself during school. I had friends who were deaf, finally, in college. And so I figured out and learned that there is a law that actually protects people with disabilities. The Americans with Disabilities Act is a federal law. So that means a person with a disability, if you’re deaf, if you’re hard of hearing, we have legal protection to access things. I didn’t know that before. No one had ever told me that.
People would tell me, no, you can’t do this. You can’t do that. And so I felt less about myself, until I arrived at college and figured out, no, I can do all these things that I want to do.
So I was able to grow and learn ASL. I was able to access the deaf world as well as the hearing world so much better as a result. And once I learned ASL, I realized that parts of the deaf community didn’t even accept me, because I didn’t grow up in a deaf world. I didn’t grow up in deaf culture. I didn’t grow up using ASL.
So that really motivated me to become part of a community, where I belonged. So I began getting involved with student government. I began getting involved with different programs that would assist people with disabilities and provide access. I became more involved with the community at large. I became more involved with youth leadership, specifically networking. I became more involved with youth politics and just the system as it worked, and how it progressed to help people with disabilities, and to provide access for people with disabilities.
So that was my first real step into my life, helping with people with disabilities, helping– for us to band together to change the system, to change communities, to change society at large. And it’s been difficult. It’s been quite tough. But it’s always tough for the first person who starts something. So to set up a system and to pull people into that is always difficult.
So I’ll give you an example. Like, if you’re afraid to step up and speak up, it’s, like I said, as the first person, it’s always difficult to be that first person and to feel alone in doing that. And especially myself, as a person of color, as a black man, as a black deaf man, as a black deaf man with a disability, it can be difficult, and I do experience struggles. And those struggles do affect me, but I try to not let things hold me back.
So my identity, again, is as a black deaf man with a disability, and a couple things that I realized is that it’s OK to be who I am. I have this world, the hearing world that I live in. I have the deaf world of which I’m a part, and they can come together. And even though I didn’t grow up in that, I was able to find that out. And I want to share my story with each of my worlds. I want to share the hearing story with the deaf world and the deaf story with the hearing world.
And during the time of COVID, I’ve realized that it’s even more difficult now to understand people because of the masks that we have to wear now. It’s very difficult, because you can’t read their lips. You can’t see their facial expressions. So what I did was I started to set up an ASL class on– not Zoom.
I said Zoom– set up an ASL class on Instagram, because I wanted people to understand that yeah, with masks, they’re necessary, but it’s driving deaf people crazy, because we’re not able to see anything to communicate. We can’t access communication with our eyes that way. We’re being blocked off. So how about. I teach hearing people how to sign ASL?
So I realized that, OK, I need to set this class up. I wanted to be able to speak and to have people have a basic knowledge of signing, because I want you to understand me. As much as I want to understand you, I want you to understand me as I’m signing. So the key here is accessibility for students.
You know / the quote is that accessibility unlocks barriers, and that leads to the potential and the possibility. It starts with us. It starts with me. It starts with you. And I want everyone to keep in mind, for example, I work with young people. And I believe that we, as people with disabilities, have to set an example for young people with disabilities so that they feel comfortable being who they are and walking in their truth, that they feel comfortable requesting accommodations and getting access. They feel comfortable using technology. And they feel comfortable connecting with one another.
And access provides the opportunity to connect with other people. For example, without the use of sign language, without having ASL interpreters, how would a person who’s deaf be able to communicate with a person who’s hearing who does not know sign language?
For the longest time, we have had the ADA. We are called the ADA generation, the group of people that were born after that passed, that law was passed in 1990. People who were born after 1990, we have had the privilege and the benefit of having federal legal protection.
I can’t imagine living in this world without access, without having provisions for interpreters and captions. Living in a world without access to the basic things I need– I can’t even imagine it. But that was how it was for people. Being alive in the year 2021 is great for people with disabilities, but there is more that has to be done.
We haven’t maxed out on accommodations and access. We need to provide more awareness to the hearing community, to the non-disabled community about things that we need. We are funny people. I mean, it’s funny to me, because I do know that words are powerful. The word “advocacy” is powerful. It provides power to people who have felt powerless.
There are so many people with disabilities, who you might not even know. There are so many who have disabilities that are shamed. They live day in and day out feeling shame because of how the world has made them feel. And the world is changing, and we want people to live out loud. We don’t want people to be left out. We don’t want people to not benefit from what is available for them. So I’m pushing people with disabilities, and I’m pushing people without disabilities to make the world better for everyone in the community in general.
And I do realize that sometimes you feel like you just have to express yourself to someone. You just have to share with someone who has a similar perspective or someone who maybe has a different perspective, but you feel like you just want to share your life, and you don’t want to be ignored, and you don’t want to feel left out. You want to make some noise. You want to be a mover and shaker, and you want to be able to take the problems that you’ve had, learn from them, and then push them aside, so you can become bigger and greater.
And so I just feel motivated in and of myself, and I want to provide that motivation for other people, again, in the disability community. Accessibility is key.
I know that as I’ve become older, that the older I get, the less fear I have and the more I look forward to the future, because I know that, yeah, things are going to be OK for me. When I was younger, I was paranoid. You know, what if my hearing aid breaks? How am I going to be able to talk to anyone? I can’t hear anyone. What if the battery runs out? What am I going to do? Oh, my gosh.
When I was young, I lived in fear because of lack of access. But now that I’m older, I realize that I don’t have to worry about that now. I have rights as a person with a disability. My rights– I recognized that with my disability, I have rights to access communication. I have rights at work. I have rights when I go to the store, wherever. I always have rights. And so that’s part of who I am, and I know my rights, and I’m able to speak up about my rights. But there are many people who have no idea.
Over the years, I’ve worn many hats. I’ve had many roles, because I’ve had to. Oftentimes, there was no one to speak up on my behalf, so that would have to be me. So that’s how sometimes I feel as you’re working with people with disabilities or working in the disability community, providing services for people with disabilities, we have to start from a place of love. It has to begin with your heart.
That way, people are able to feel your heart and feel your love and feel your compassion, and that’s a powerful thing to be able to provide. It’s powerful to be able to share your story with other people who need to hear that. And so I think that’s awesome. That’s an amazing thing. 20 years ago, a lot of things were going on, but we didn’t have technology to be able to provide. We didn’t have Zoom. I didn’t have a video phone. It’s amazing what technology– the gaps that technology can bridge.
There’s so many things that we’re able to use. It’s quite surprising how we’ve advanced, and so it’s to the benefit of all our communities. Technology and accessibility go hand in hand. And I do know that we– everything that’s happening right now is for the best. It’s for the strengthening and growing of our community, if we let it be. And I have a passion for our community to build a better community that can last, one that can withstand everything, that can make everyone better.
And being deaf, having a disability or whatever you want to call it, you have to start within, start from loving yourself. You can’t wait for other people to accept you or to provide access or to want to be your friend. Don’t wait for that external approval. Start with loving yourself. Start with advocating for yourself for access, advocating for the things that you need. Start where you are. And I believe that the problem isn’t the disability. The problem is the environment.
We, as people with disabilities, we, as people who are deaf, the problem isn’t me. There’s nothing wrong with me. The problem is with the world, the external around us that doesn’t provide the things that we need. We need access. Like, that’s just the normal way of life. Hearing people have access to the world. You have access to spoken communication. You can hear. You can speak. You can turn on the radio and get news. So we have to, in turn, provide interpreters for–
Sorry I was frozen. Mikey’s saying. I am so sorry about that. I’m sorry about the interruption with my internet. So I don’t even know what I was saying when I got frozen. It’s starting off to be that kind of a day. Sorry about that. So I mentioned talking about finding love, starting within, loving yourself. Oh, using your skills and your talents to achieve your goals. I just really think that it just makes the world better. Having access makes the world better. Thank you.
SAMANTHA SAULD: Awesome. Are we all set?
INTERPRETER: Yep.
SAMANTHA SAULD: Cool. All right, we can move on to the Q&A. So thank you, Mikey, for sharing your story. The first question is, someone says, “I’m curious about it you have done any consulting and/or presentations in other states about deaf people with autism and/or deaf plus. Can you also share your contact info as I’d love to chat with you about issues or needs in Arizona?” I believe Sofia added Mikey’s information in the chat. So Mikey, I don’t know if you have anything else–
INTERPRETER: Yeah. Yeah. Yeah, sure. Please go ahead and share that information. I have no problem with that.
SAMANTHA SAULD: Cool.
INTERPRETER: Yeah. I do work, in general, related to that topic. I used to sit on the California– the State of California’s Life Council Board. It’s an advisory council for the state of California regarding people with disabilities and their issues, and so that was a really good experience for me, because it helped me to share the deaf experience and sit at the table with people who had other experiences with different disabilities. So– yeah.
I live in Los Angeles, and here I’m involved with my city, providing accessibility, and consulting on that. We have a disability commission that’s not as active as it could have been because of– maybe of COVID, and I do want to have that re-established again, that connection, because it’s– politics and government, of course, can be rather sticky, and it can be messy, because everyone wants to have a hand in the pot. So yeah, get in touch with me.
SAMANTHA SAULD: Cool. Thank you. The next question is, “Have you been able to help bring methods of accessibility, like ASL, to your community in Ghana?”
INTERPRETER: Oh, that’s a good question. I do not have a strong connection with my community in Ghana. I know Ghana does not have a law, federal law like the ADA, that protects people with disabilities there. There are a few schools for deaf and hard of hearing students that use sign language there. I’m not that familiar with them, however. And for people with disabilities in Ghana, it’s not really the best country to live in. The culture there is not as accepting of it.
The older generations have much more control, and they look at people with disabilities as being like, hey, God is punishing you for doing x, y, and z. That’s why you had a child born with a disability. So it’s a different culture, and they’re a little bit slower to change their perspectives on people with disabilities.
So yeah, it’s concerning, and I just really believe that in the future, if we are able to give people tools and set them up correctly, they’re going to be able to figure things out and work their way through that and change, because kids with disabilities have potential to grow up and just continue to be great. And I didn’t realize that myself as a child. So we do need to offer support for those communities, but they don’t have support. They don’t have the finances. They don’t have accessibility. So being able to provide that accessibility has not been a thing in Ghana to this point.
SAMANTHA SAULD: Got it. Thank you for sharing that. The next question is, “What would you say has been one of the most important lessons that you’ve learned?”
INTERPRETER: That’s another good question. To be honest with you, being yourself. That’s a tough thing to do. That’s a tough thing when you live your life, and you see so many other people doing their thing. It’s not easy, because you want to change to be like other people. You don’t want to be someone who’s different. When I became 18, that’s the first time I realized that, wow, I’m deaf. I didn’t realize that before.
But learning to accept myself for who I am, that was the best thing I could ever do for myself, because it helped me inspire other people to be themselves as well. And so I have a strong belief in our young people and that if we invest in them, if we give them the tools that they need, that they can accept who they are, just as I’ve accepted who I am.
And once I’m able to accept myself, it’s a way to show other people. You know, people are like, oh, my gosh, you’re deaf, and you’re able to do so many things. But that’s the way it is. You have to learn how to love yourself. Love yourself as a person with a disability. I feel like people with disabilities are not taught to love themselves. And it’s really sad. It’s not there. Most of the time, you are in a family who doesn’t even accept you, and they want to change you. And we need to change that, because that’s a big issue.
It’s a hard process, but I believe that everyone has their strengths, and everyone has their weaknesses, and we have to be able to work on– some people are really good at drawing. Some people are really good at doing different things. Some people– like Mickey was saying, he’s an actor. He has weaknesses because of his disability, but he’s able to transform them into strengths for that purpose.
And so I think follow your dreams, believe in yourself, and it doesn’t matter whether you have a disability or not. Dream, and be who you are. And people will set up barriers for you, because you have a disability. The world is going to have barriers, but it’s ridiculous. Why set up barriers for anyone? And again, I must reiterate, the problem is not the disability or the person with a disability. The problem is with the environment.
So there’s ways that we can all do better, and I’m really motivated to just go ahead and jump in and get to work with that, because I’m tired of having to deal with these blocks on a daily basis, dealing with these barriers. So I think if you provide accessibility, it’s not only good for the person who’s deaf. It’s good for the world at large. So be yourself. You can be amazing, even as a person with a disability.
SAMANTHA SAULD: I love that. Thank you for your perspective. So we have time for one more question, and the last question is, “What myths about sign language and language acquisition are most harmful to the human rights of deaf people?”
INTERPRETER: American Sign Language provides access. That’s the whole point of having interpreters and such. American Sign Language is beneficial to everyone. It’s funny, because during COVID, hearing people have been wearing these masks. And they can’t even understand each other as hearing people. They’re like, huh? Repeat yourself. Say that again. Even hearing people don’t understand each other.
So if you’re able to use ASL, that clears up communication for everyone. ASL is such a benefit, that language, for hearing people as well as for deaf people, for infants. You have hearing babies learning ASL, because they need to communicate. Six, seven months old, they’re able to use signs to say what they want as babies. So why aren’t adults doing the same thing? Why is this only something for hearing babies?
American Sign Language makes life so much better, let me tell you. It can be so hard to understand people, but via ASL, you have a language to communicate. Again, when I went to college, and I joined into a deaf sorority– I tried to join a deaf sorority. They turned me down, because, obviously, these are girls, and they’re like, no, we don’t want a guy in here trying to do it with us. I’m like, but I want to be in here and sign with you guys. You guys are a signing sorority. This was great.
SAMANTHA SAULD: Awesome. Thank you so much. Thank you to both Mikey and Mickey for sharing your stories with us, and thank you for everyone for joining us today and celebrating Global Accessibility Awareness Day.