EXCLUSIVE INTERVIEW ‘ILLUSTRATING HUMANITY’
TEDDY COSMO
‘STRUMMING THROUGH ADVERSITY’
NOVI BROWN
‘SETTING THE STAGE’
JONATHAN KOHANSKI
‘GO LOOK’
DENA KUEHL
‘OUR VOICES CARRY’
FOX RIGNEY
'EMBRACING SUPPORT’
MARISA HAMAMOTO
‘RESILIENCE IN MOTION’
JOEL CARTNER
‘THE OTHER CHAPTER’
KIMBERLY QUINN
‘THE ACT OF MINDFUL LIVING’
ON THE COVER: KAM REDLAWSK
AwareNow Magazine is a monthly publication produced by AwareNow Media™, a storytelling platform dedicated to creating and sustaining positive social change with content that inspires and informs, while raising awareness for causes one story at a time.
SETTING
NOVI BROWN
AN
BURT KEMPNER
PRAYER
ILLUSTRATING HUMANITY
KAM REDLAWSK
VIVID
JACK MCGUIRE
THE OTHER CHAPTER
JOEL CARTNER
WITHOUT ART
PAUL S. ROGERS
AARON BAKER, LAQUITA DIAN
JACK MCGUIRE
STRUMMING THROUGH ADVERSITY
TEDDY COSMO
GO LOOK
JONATHAN KOHANSKI
RESILIENCE IN MOTION
MARISA HAMAMOTO
REGARDING JEST
DR. TODD BROWN
TAL ANDERSON, MICHAEL RICHEY WHITE
THE
JOY BLANCHARD, SONJA MONTIEL
SHAPING INCLUSION
DR. PATRICIA WRIGHT
PASSION ON & OFF THE PITCH
JAY ANDREWS
FACES OF LOVE
DEBORAH WEED
OUR VOICES CARRY
DENA R. KUEHL
MY SON IS NOT A CRIMINAL
LAURA CRACIUN, NSSC
EASY WAYS TO HELP THE EARTH JACK MCGUIRE
DR. ALLY ZLATAR, TANITH HARDING
We should realize in a vivid and revolutionary sense that we are not in our bodies but our bodies are in us.
Ruth St. Denis
The Vivid Edition may be our most diverse edition to date, reflecting the intricate depth of causes that affect us on a global scale. While there is no denying that certain issues impact us universally, there are also causes that uniquely resonate with each of us individually, shaping our perceptions and driving our actions.
AwareNow stands as a beacon of unity, championing a multitude of causes that define our collective mission. Before diving into the vibrant energy of The Vivid Edition, let us remember our mantra, "We will no longer ask for permission to change the world.” This statement embodies our relentless commitment to proactive change.
Let us embrace the boundless possibilities that arise when we come together under the banner of humanity. Together, let's amplify our voices, magnify our efforts, and pave the way for a world where compassion, understanding, and action intersect seamlessly.
Co-Director of AwareNow Media, CEO & Co-Founder of Awareness Ties
Allié started her career in performance poetry, then switched gears to wine where she made a name for herself as an online wine personality and content producer. She then focused on content production under her own label The Allié Way™ before marrying the love of her life, Jack, and switching gears yet again to a pursue a higher calling to raise awareness and funds for causes with Awareness Ties and AwareNow Media.
Co-Director of AwareNow Media, President & Co-Founder of Awareness Ties
Jack got his start in the Navy before his acting and modeling career. Jack then got into hospitality, focusing on excellence in service and efficiency in operations and management. After establishing himself with years of experience in the F&B industry, he sought to establish something different… something that would allow him to serve others in a greater way. With his wife, Allié, Awareness Ties and AwareNow Media were born.
The views and opinions expressed in AwareNow are those of the authors and do not necessarily reflect the official policy or position of AwareNow Media. Any content provided by our columnists or interviewees is of their opinion and not intended to malign any religion, ethnic group, political group, organization, company, or individual. Stories shared are not intended to vilify anyone or anything. Their intent is to make you think.
Please note that you may find a spelling or punctuation error here or there, as our Editor-In-Chief has MS and loss vision in her right eye. That said, she still has perfect vision in her left and rocks it as best as she can.
NOVI BROWN ACTOR, PRODUCER & DIRECTOR
Novi Brown is a talented actress known for her role in ‘Sistas’ and a passionate advocate for black excellence both on and off the stage. In this interview at the Global Black Impact Summit presented by the Black Impact Foundation, she shares her perspective on authentic representation, her role as a director and producer, and her vision for a more inclusive entertainment industry that unites the global black community through arts and entertainment.
ALLIÉ: What does ‘Black excellence’ mean to you both on and off stage, and how do you strive to embody this concept in your work as an actress?
NOVI: For me, right now, where I am in my life, because I feel definitions evolve and change, Black excellence means
Art is literally everywhere you look.
NOVI BROWN ACTOR, PRODUCER & DIRECTOR
NOVI BROWN ACTOR, PRODUCER & DIRECTOR
“…there are so many types of creatives out here that won’t make you beg, they’ll just align.”
NOVI: (continued) It's hard for women to show up as themselves, but it's hard for Black women or minority women to show up as their full self. Whether you have kinks, curls, whether you have straight hair, blue eyes, dark eyes, we're always altering something about ourselves. I feel that the Black excellence means being authentically you, whatever state you're in. That's for me on and off the screen. The way that I embody that is by allowing myself to feel all of my feelings. I allow myself to go through all of my cycles. I'm not scared of me, and that is what Black excellence is to me.
ALLIÉ: As a Black director and producer, how do you navigate the entertainment industry to ensure authentic representation and opportunities for Black talent both in front of and behind the camera?
NOVI: I'm on a mission to find my creative soulmates and my creative tribe, people who really understand the stories that we should be leaving behind. Entertainment is great, but entertainment educates people and makes you either more aware of your society or makes you scared of your society. So for me, it's hard. It's always going to be dif ficult because you're convincing people that you're worthy. And I have now created a new pathway for myself where I am only going to be in commune with people who already see my vision with me.
I don't have to wave it in their face, I don't have to draw a picture, I don't have to shake them, beg them. I have to just align with them and that's how I'm navigating this industry. And it's been difficult because it's like dating; you have to go through a lot of dates, a lot of conversations just to see where people's hearts and heads are at. But expanding your network, going to different countries, talking to people from different cultures, that's the way that I'm navigating this industry. Hollywood is not the only place. There are so many creatives around the world, and that's something that I want to bring to people who do live in America and who do want to pursue a career in the entertainment business. Globalize your perspective, because there are so many types of creatives out here that won't make you beg, they'll just align.
ALLIÉ: How do you believe arts and entertainment can serve as a unifying force to bring together the global Black community, and what initiatives or projects have you been involved in to further this goal?
NOVI: I mean, name your favorite concert, I feel like everyone's had a moment where art and community have created an imprint in who they are. Whether it's the favorite album, you're riding down the street in the car with your girls, that was a moment in your life and it defined who you were at that time. Whether you are watching street artists, you know, I used to live in New York City, and I would see all the drummers on the train, and you would just let that energy overtake you. Art is literally everywhere you look. The buildings, the music, even the plants, right? All the different types of plants God created, everything is art. So the way we can continue to move in that way is to show up for each other, is to support one another, and it's to really advocate the artist and uplift them because all of us participate in art every single day, yet there's so many starving artists out there. And that's something that we really need to start supporting each other. In my perfect world, I feel like every artist should get three years of free living, free food. And so right now, how I'm trying to activate that or how I am activating that is by working on my own projects where I can bring my artist friends together. I have a hair company called House of Bantu, which is a hair care, selflove, self-care company that will help you embrace your natural self, your natural styles. So that's one way. And of course, I'm creating other productions inside things such as my own TV shows or my own movies, or even my own astrology podcast where I'm bringing spirituality into the community. So it's just about continuing to be creative, and it's okay if something fails. It's okay if something doesn't go all the way through because what you're doing is you're dating people and you're trying to see how the vibe is. So just keep creating, keep showing up and keep clapping for people. It’s hard being an artist and a creative person because you fail in front of the world. So we need that grace.
Exclusive Interview with Novi Brown https://awarenow.us/podcast/setting-the-stage
ALLIÉ: In your opinion, what are the most significant challenges facing diversity and inclusivity in the entertainment industry today, and what steps do you hope to see taken in the future to address these issues?
NOVI: The significant challenges today are the liars, the people who play games, the people who use media words to try to act like they're actually being activists in this. You can tell who's doing the work and you can tell who's not. Just pay attention to that and push out all the other narratives, because we're in 2024 when this is being filmed, and the fact that we're still begging to not be killed, to not be violated, to not be lied to is a problem. And it's because some of the people who are in charge, that's who they are. They're not truthful honest people. They're not authentic people. So the only way to get past that is to get them out and have more people who actually care.
it is happening. I don't feel it's happening. I know it's happening. There are groups and tribes being created where we're raising our awareness, we're raising our standards of what was acceptable before because our ancestors sacrificed for us to talk about it and to speak up for ourselves. And if they did what they did without social media, without air conditioning, even without any help or clothes on their back, then we can do it with all the privileges we've been given. So now, for the people who have been lying, we can see it in your portfolio, we can see it in the people you hire, and we can see it in your business protocol. It's okay. Your time's about to run out and we're going to take over.
ALLIÉ: What are your hopes for the future of the entertainment industry in terms of diversity and inclusivity, and how do you envision your role in contributing to positive change?
NOVI: My hopes are that we continue getting more diverse funding for our projects to be seen fully through. We deserve $150 million marketing budgets as well, so we can have all of our stories heard. For me, I'm aligning myself with productions, people who see that global impact and who want to continue doing that and not make it a one hit wonder. We had Black Panther, we can do more. We have so many stories… Black history did not start with slavery. It did not. So we have to move past that. For me, I'm going to continue creating those stories. I want to see myself before certain people came along and told me who I'm supposed to be. So those are the narratives that I'm creating and anybody who wants to join my team, hit me up.
ALLIÉ: I’m raising my hand right now.
NOVI: Yes, let’s do it. ∎
Too insignificant to be seen or heard. Seen and heard anyway.
BURT KEMPNER
WRITER & PRODUCER
An imperfect prayer pushed out through worried lips.
Sailing over oil-slicked rain puddles and captured by a passing bird.
Lofted high and bounced off a cloud.
Rising in a shower of sparks.
Shepherded by solar winds.
Released into the void.
Scattered to the place where all points become one to land gentle, gently in the lap of the Creator.
Too insignificant to be seen or heard.
Seen and heard anyway.
Returned home magnified, sanctified on the wings of “Yes.”
(Composed on a rainy night in a hospital parking lot.)
Written and Narrated by Burt Kempner https://awarenow.us/podcast/an-imperfect-prayer
BURT KEMPNER Writer & Producer www.awarenessties.us/burt-kempner
BURT KEMPNER is a writer-producer who has worked professionally in New York, Philadelphia, Washington, D.C., and Florida. His work has won numerous major awards, and has been seen by groups ranging in size from a national television audience in the United States to a half-dozen Maori chieftains in New Zealand. Spurred by his love for inspiring young people, he started writing children's books in 2015. Learn more about Burt and his books at his website: www.burtkempner.com. AwareNow Podcast AN IMPERFECT PRAYER
KAM REDLAWSK ARTIST, WRITER, DESIGNER & DISABILITY ADVOCATE
Kam Redlawsk is a testament to the power of perseverance and the beauty of embracing one’s unique journey. A wanderer by nature, she traverses the world, soaking in its diversity, and infusing its essence into her art that vividly portrays her experiences, her struggles, and her triumphs. Beneath the surface of her vibrant creations lies a poignant truth—a truth shaped by the relentless grasp of GNE Myopathy, a rare and degenerative muscle-wasting disorder that has gripped Kam’s life since the age of 17. Through her art and her words, Kam seeks to transcend the limitations imposed by her condition, offering a glimpse into the depths of the human spirit and the power of expression. Where incredible artistry and commitment to accessibility meet, there you will find the incredible talent of Kam Redlawsk.
ALLIÉ: “Immobility is unlike any silence I’ve ever heard.” You shared this in a post you did alongside one of my many favorite illustrations of yours, this specific one entitled ‘Overcome’. Can you share your thoughts on immobility as it pertains to silence?
KAM: As someone who lives with a progressive muscle wasting disease, I have had experience with many stages of
KAM REDLAWSK ARTIST, WRITER, DESIGNER & DISABILITY ADVOCATE
“I think we’ve all experienced that kind of silence when we’re struggling…”
KAM: (continued) feeling of disconnect, a loneliness, and a life that morphs into more of an observer than an equal physical participant with the feeling of enhanced silence. Sometimes this can be difficult and isolating. This kind of silence can make you feel invisible or strangled, like the octopus tentacles around the woman’s throat in ‘Overcome’. She is overcome by silence, a feeling of voicelessness. I think we’ve all experienced that kind of silence when we’re struggling, even if we’re in a crowded room, there’s a feeling of being very alone or lonely, as if no one can hear your cries.
There is the distancing silence, but there’s also the mind wandering kind of silence where you go through a rumination of remembering yourself doing something as simple as washing a dish or getting in your car and starting it. So much of my time is spent waiting on others to help me do the mundane, so as I sit or lay there waiting, there’s nothing to do but ruminate which can feel isolating.
But silence doesn’t just have to be negative. The more I’ve progressed the more my mobility happens in my mind. My imagination and its landscapes, and a wandering mind that only silence, in a sense, can truly allow, is also a gift. I’m afforded the time to do this because of the mobility.
ALLIÉ: I’d like to discuss another favorite piece of mine from your collection. It’s called ‘Ponytale’. I ordered the print and it resides in my office above my computer. I look to it, often, to be reminded and to reflect. For those unfamiliar with this piece, will you please share the story behind it?
KAM: I drew Ponytale some years ago when I still had decent function in my arms and hands, but the weakening was beginning in my upper extremities, so suddenly getting my arms up to put my hair into a ponytail was becoming just another thing I would soon not be able to to do. I hated that every little move had to be such a crusade, so I imagined myself as this proverbial mountain or hill, and I drew a profile view of a woman (me) with her long ponytail extending downwards into the hill that a little girl has to climb, who is also me, to get back to her adult self.
In some of my earlier illustrations there’s sometimes a little girl and an adult woman in them, and they represent two versions of me; the younger and older self. The little girl in these scenarios is usually pleading with the older self, who is in the midst of struggle, to remember who she once was and where she came from. Since I was young, I always recognized there is a time in our journey, from young to old, when we decide to give up on what we once was, give up on our dreams or lose our sense of adventure and thus give up on ourselves, in a way, and I’ve always been aware of this fine line—when the span of time and life’s struggles take us to unrecognizable version of ourselves. This awareness is what has helped push me through life and to live. So this is what the little girl is doing as she climbs the hill of hair back to herself, trying to remember that she has it within her to keep going, even as the multiple clocks and stopwatches drawn inside the hill of hair remind her of her immortality.
ALLIÉ: I love your stories behind your art, and the food as well when it comes to your piece ‘Kimchi Nostalgia’. Will you talk about your first experience with Kimchi and the whisper you heard?
KAM: As an adoptee, I grew up in a white family, so I had little experience with Korean food until I went to college where a high number of international students were Koreans. But before this opening up of my culture in my college years, I did have a little exposure to Korean food as a 10 year old during a Midwest summer road trip to Kentucky to meet with one of my dad‘s military friends who was married to a Korean woman and had two sons. His wife was so
ARTIST, WRITER, DESIGNER & DISABILITY ADVOCATE
“It was amazing to reach that little girl whom I had forgotten.”
KAM: (continued) excited to meet me, and happy to be the one to introduce me to some Korean food. She took me to the local commissary, and I was surprised to see the instant spicy Korean Ramen noodles. I had only known about chicken ramen that Americans eat. She got me a bunch of the ramens, and made me some rice and homemade egg rolls and kimchi she made. As she sat me down at a traditional Korean table on the floor, she set out some rice, kimchi and other treats. When I sniffed the kimchi it felt familiar. If you know about olfactory memory, then you know smells and odors can unearth memories, and that’s what happened. The memories weren’t specific, it was more a sense of a time before this place, before America, before my life here, and it was amazing to reach that little girl whom I had forgotten.
ALLIÉ: I find myself getting both enjoyably lost and beautifully found while exploring your illustrations, Kam. I’m eager to get lost and found in your upcoming picture book, ‘Monster and Me’. Please describe the relationship you have with the monster you bring to life in these illustrations.
KAM: I have just completed my picture book, “Monster & Me” that is inspired by my rare disease and disability. The story actually originated many years ago when I was still walking with a cane. I had fallen and had to wait on the floor for my husband to come pick me up. His work was an hour away, so I had a lot of time for my imagination to run wild, and that’s when I saw a big furry gray foot, and thought to myself, he’s the reason why I fall and struggle.
When I got up, I drew an illustration of me as a little girl with this big gray furry monster, and I imagined him as this forlorn and sweet entity who didn’t know any better. He wasn’t mean, and he didn’t know why he had to be with me, all he knew was it was his purpose to be there, so he was confused as to why I didn’t want him near me. After a while, I realize he isn’t going anywhere, so the story becomes a journey to acceptance.
I think a lot of advocacy these days is only about empowerment and societal barriers as the only dif ficulty of disability when this is not true. So, I speak to fellow disabled people and anyone who is going through struggles that seem to follow them everywhere they go.
I think it’s really important to be real about advocacy, and not to forget that there are many disabled people who have just become disabled, or may have been disabled for decades and still haven’t found the path to acceptance. So I speak honestly to them. Monster & Me is meant to represent the relationship we all have with ourselves and struggles, and if we are able to have a relationship, and some empathy for that little struggle that follows us around, then, perhaps we can have empathy for ourselves.
ALLIÉ: Not only do you use your illustrations to communicate and connect, you use your words. In a recent blog post you shared these words... “For me, breaking the glass ceiling is not about breaking it for yourself, it’s about making sure equality and equity exists for all, because it’s not breaking glass ceilings when your shards are killing everyone underneath you.” This piece you published on International Women’s Day was profound. Here you shared the fact that you’ve been called a traitor by other women and by members of your own party for calling out inconvenient truths. What keeps you motivated to keep calling out these truths?
KAM: I’m always against exceptionalism. Exceptionalism is deeply dangerous and keeps the truth in the dark, not to mention, continues harmful business as usual. I think this is highly dangerous, and feeds the system of tribalism and politics over truth and true change. I have the same ideology and bar of morality for anyone in power, no matter the
KAM REDLAWSK ARTIST, WRITER, DESIGNER & DISABILITY ADVOCATE
“Power supersedes identity and can corrupt anyone, and I don’t excuse behavior that hurts the identity one says they’re allegedly for.”
KAM: (continued) identity, but I’ve found that in the era of identity politics, power exploits identity as a shallow way to reaffirm or reassure the people that everything is on the up and up, because it’s a minority identity that is in the leadership role.
Power supersedes identity and can corrupt anyone, and I don’t excuse behavior that hurts the identity one says they’re allegedly for.
I’m actually very much into sociopolitics, specifically foreign policy. I like the analytical side of it and identifying systems of patterns and how they intersect with human behavior and motivation. But on my Instagram, I try to stay neutral, because I have found that online advocacy, through means of reposting simpli fied memes and headlines that garner no real education, understanding or conversation, only really serves to rally everyone who already believe like you—so it becomes more of a collecting of followers who already think the same as you, while driving our online army into more anger and rage that we unleash without direction or purpose. But for International women’s day, I got honest, specifically about war and how it is the most prolific on women and children, and that leaders who are at the helm of power can’t claim to be feminist if they are unleashing endless war around the world, in fluencing foreign elections, overthrowing of democratic the elected governments and installing brutal conservative regimes in their place. All of this only serves to open a vacuum of chaos and instability, which, we should know by now, only leads to violence, and especially violence on women as well as the setback of progress for women’s rights and beyond. This is no secret that war does this, and yet our system is extremely bipartisan in their support of never-ending war. Our Congress of both parties has never met a war they haven’t voted for, and leadership, whether it’s the potus, secretary of state, or other high levels of national security, it’s the same. Since 1776 we have only had some 20 something years of peace, and I think it’s time we ask why.
I’m unequivocally for identity politics in terms of more varied representation in our leadership roles. Of course I am for this. It’s criminal that only one type of person has maintained all the control in this country. But since there’s so much importance and awareness now in identity, it’s important to also know that power structures and companies can exploit this by using these times and identity as a simple way of messaging that everything will be good if only representation exists, and only policies that will serve minority identities will be installed, whether that’s women or POC community, but this is unfortunately not always the case. With a close eye on all power, no matter who holds it, the question also needs to be what is human nature when one obtains absolute power?
During a time of heightened division, which we still are in, I was really into sharing long nuanced political essays that focused less on sides, and more on the structural system, exploitation and systemic corruption. I think we fall into the tribalism of what I call “football politics”, where there’s two sides who are polar opposites, and it becomes the game of only pointing to the other side as the reason for all the countries' woes, when the reality is far more complex. While we are busy being tribal, we fail to look at our own side as well, which is why the entire system keeps moving right, as neither side truly holds their own accountable, and when inconvenient truth does happen, exceptionalism creeps in, which means a whole lot of harmful policies are happening on your own side, while you only bark at the other side. Party bosses rely on this type of lack of accountability and lack of acceptance of inconvenient truth, because no one wants to admit “their side” is also doing things that are opposite to their words.
KAM REDLAWSK ARTIST, WRITER, DESIGNER & DISABILITY ADVOCATE
“Identity and being proud of our identity is so important, but there are moments when we must remove ourselves from the identity, and side with what is right, what is humane. This is the ideology I subscribe to.”
KAM: (continued) For myself, if I comment on politics, I typically talk about the whole system, including my own party, and when I did this, friends in my own party called me a “traitor” for telling the truth. Neither side realizes they don’t really want to know the true history of the leaders they voted in, and most don’t know what their party is truly doing in their foreign policy, so as I was stating inconvenient truths about our never-ending involvement with war, and that it’s very bipartisan, as well as inconvenient truth about female or POC leaders who were very much war mongers, I was told by other liberal female friends that I hated women, which was crushing and disheartening, as just war alone is a huge woman’s issue, and yet all these women who claim to be feminists were telling me I hate women just because I called out power; whether a white man, a woman, or a person of color, for knowingly being warmongers and helping the military industrial complex climb even higher.
Identity and being proud of our identity is so important, but there are moments when we must remove ourselves from the identity, and side with what is right, what is humane. This is the ideology I subscribe to. I have no tribalism in me when it comes to what’s right, so when I say sometimes it’s important to remove yourself from your identity so you don’t become blinded by your own allegiance, I say this, because what’s right should always prevail over protecting power or those who look or speak like you. We are easily corralled into 2 simplified cages within our political system, and this institutional dividing can cause us to only want to hold the other side accountable and not our own.
People must realize that it’s very difficult to get to the very top of the power system, so if a new identity is accepted by the top, sometimes there’s a possibility that it’s because they aren’t a threat to the system and willing to do business as usual. It is so important to, yes, advocate for more equality and equity with minorities, whether it’s women or people of color, but we must also make sure that all identities are actually working for those underneath them. Electing a woman to a position of power is not progress if that women continues or elevates the war mongering that has already existed all the centuries before. If you are a true feminist, you care not only about shattering your own ceiling, but about all women, and not just in your own country, but everywhere, because anything else is selective justice and not truly pro-women. A bomb that kills you and your family is not sweeter if it’s sent over by a minority in power. This is what I meant with my international women’s day post, because I get very tired of these platitudes and the empty words these leaders say for votes, when I know their actual policy, truth and leadership history deeply contradicts all their words.
ALLIÉ: An advocate for accessibility and inclusivity, you use your vibrant art and vivid words to serve humanity. Kam, what do you hope people take, keep and share most about your work?
KAM: There are a couple main themes in my art, writing and advocacy that exist beyond disability and societal barrier advocacy, and that’s talking about the more hidden realities of a disabled life that people are afraid to talk
Live your life as much as possible.
KAM REDLAWSK ARTIST, WRITER, DESIGNER & DISABILITY ADVOCATE
AwareNow Podcast ILLUSTRATING
Exclusive interview with Kam Redlawsk https://awarenow.us/podcast/illustrating-humanity
KAM: (continued) about, because it’s too vulnerable, like the emotional and acceptance journey of disability, the chronic state of being disabled or chronically ill, and what that can do to one’s mind and spirit.
I think many people view emotions as a “woman thing”, when emotions are so essential to understanding ourselves and others, since so much of human behavior and motivation centers around emotions and the events in our lives that have caused that emotion. I think it’s important to be vulnerable, at least with yourself, because vulnerability is honesty. We think we’re avoiding our emotions by not confronting our problems, but we really aren’t. We can feel as if we’re hiding them, but undealt with emotions and traumas always surface in negative or unhealthy ways. So I think one of the main takeaways is to not to be afraid of vulnerability and your own emotions, and in a similar parallel take-away, to understand that everybody has those emotions and struggles, as a way of humanizing others.
I talk about disability, but the bigger overarching commonality in my sharing is about the human condition. I think it’s so easy for humans to observe all the differences between us, which often can breed ignorance and fear. We tend to fear what we think is different, but I like to remind people in my writing that, while we may have so many differences, we are not unlike each other, and we experience the same basic core emotions and struggles, and how important it is to remind ourselves of this as a collective humanity.
I think the other main take away from my sharing is to live your life as much as possible, because we really don’t know how much time we have left. I think this is the single greatest form of knowledge I’ve gained through my progressive disabled experience. ∎
Follow Kam on Instagram: @kamredlawsk
View her work and her words online: www.kamredlawsk.com
MCGUIRE
Every time I clear my head all I see is you.
You’re the manifestation that seeps into my nerve endings and cells multiplying and dividing my thoughts hopelessly making me want more an endless composition composed only of my images of you reversed and analyzed enduring every test coming to the same conclusion again and again.
You’re all I'll ever need and all I could ever want.
JOEL CARTNER LAWYER, AWARENESS TIES OFFICIAL ADVISOR & COLUMNIST
‘UNYIELDINGLY HUMAN’ EXCLUSIVE COLUMN
BY JOEL CARTNER
As I make my way through Capitol security, the security guard thanks one of my coworkers for “assisting” me as he waits for me on the other side of a metal detector, as though I can’t possibly be there under my own power. A Best Buy attendant directs questions clarifying what I’m looking for to my brother, making it clear he thinks I lack capacity. I’ve explained to bouncers and bartenders across DC that I am, in fact, not drunk; I just walk funny. [1] A professor kindly reminds me that quietly slipping into a lecture I’ll be late for isn’t really practical for me, that everywhere I go, I am inherently noticeable.
Each of these instances, and so many more from across my life, try as I might to ignore them, make me feel about two feet tall. Like a hole could spontaneously swallow me up, and everyone’s eyes would still be on me. Obviously, everyone navigates a world where people make snap judgments about them, but the thing with living with a visible disability is those snap judgments are often more like a laundry list, and for whatever reason, people are much more comfortable voicing their opinions about you out loud and allowing them to color the way they interact with you.
That’s why I always told myself I wouldn’t do a Coming-Out “Thing”. I know that’s a choice absolutely loaded with privilege. Apart from the physical disabilities, I’m a pretty standard issue white guy with a pretty deep voice, so being gay is not typically an assumption about me people make. Add back into that the physical disabilities, the assumptions those carry, and the fact that most people don’t typically see people with disabilities as sexual beings in general, and it’s really not an assumption people make about me. While I would push back against the notion that I’ve leaned into the fact that I’m either straight-passing or viewed as not having a sexuality at all, if nothing else, I’ve generally made the decision not to correct the assumption unless there’s a reason. So many people are targeted every day because they present their queerness to the world, and people hate them for it. I don’t go around hiding who I am; I’ve had conversations where I’ve come out to individuals and groups, I’ve done things like held a boyfriend’s hand in public, and so naturally, been “out” in public. I’ve had the experiences of the worry over how people would react and all the attendant trappings of coming out on small scales, but the lack of the one big coming out moment and my ability to, in this particular area, escape notice, in light of what so many in my community go through, has been a source of guilt for me.
The thing is, considering the many interactions I’ve had, like the ones I led this article with, I carry around people’s perceptions with me all the time. Questions like “Am I safe here?” “Will they listen to me?” and “What are they thinking?" are my constant shadow, much like they would be if I were only gay or only disabled. So, this piece of me, against the backdrop of all of these assumptions with regard to my disabilities, this piece of me gets to be just mine. I control who knew this about me, when, and how in a way that I get control over almost nothing else. A small piece of protection against a world too eager to assume it knows more about me than it does.
The other reason for my reticence to do a whole Coming Out “Thing” has to do with the LGBT+ community’s perception of disability in general. Gay culture, and maybe especially DC Gay culture, is obsessed with fitness. It probably has its roots in the HIV epidemic and the need to broadcast health, [2] and for DC specifically, the Lavender Scare also probably didn’t help. But the long and short of it ends up being that for many (not all) in DC’s gay spaces, health and the appearance of wealth are everything.
To give you one horrible example, one night, a friend and I were walking to a gay bar to meet some other people. As usual, I had my hand on his shoulder; within a couple of feet of the bouncer outside, my friend pointed at an elevated piece of pavement (a trip hazard for me) and warned me. Then, as we more directly approached the bouncer- before I’ve said anything, before I’ve so much as reached for my wallet, the bouncer looks at me and says “Sir, no.” Confusion is my first reaction. Despite the number of times I’ve had some version of this interaction in DC, my first thought is, “Is he talking to me?” my voice has inconveniently abandoned me, but I keep reaching for my wallet to show him the “not for motor vehicle operation” on the back, to say we’re really just here to grab some people and head somewhere else or to at least (hopefully) articulate that while in this instance I have actually had one drink, I’m definitely sober enough to walk into this bar. All the while, this bouncer continues to not explain himself beyond telling me “no” and shaking his head as I finally get my ID out.
Thankfully, my friend steps up and explains, and I manage, through the shock, to string together something coherent enough to gain entrance to the bar. Then, when I’ve walked about five steps into this bar, some guy walks up to me and asks, “Are you alright?” which might be sweet considering the shame probably hasn’t completely left my face, if he hadn’t paired it with a sweeping head-to-toe look, and an expression that suggested I’m gum he’s just stepped on. Altogether, it’s another all too familiar big red neon sign I see people point my way that says, “What is he doing here?”. Then my friend rejoins me, and I get another “are you alright?” as we make our way to collect the rest of our party. But, hey, then we’re all outside and on our way to where we actually wanted to be. So, at least this version of events was short and not a recurring night-long theme? So, for all of that and more, I really didn’t feel like the LGBT+ community was somewhere I belonged, and that was a whole other reason not to do a “big” Coming Out Thing; why attach myself to a community that so clearly would rather not see me? But that’s not a mindset that’s particularly productive. While there are spaces I will absolutely avoid if I can, I know that whether people know it or not, what happens to the queer community still happens to me, and I’d be much better served educating people that, yes, queer disabled people do exist, than steeping in my bad feelings on the subject.
So, if I’m so protective of my choices about this piece of me, why am I writing an article to go out to god knows how many people about it? First, there’s a pretty big part of me that feels like this exercise is, yes, antithetical to the point of safeguarding that choice. But also, I think some of it is that it’s a part of my story so few people know, and it just sort of feels like it’s time. Some of it is that a little while ago, I ran face-first into a relationship that taught me some things. Some of it is watching what the world is doing to LGBT+ people and spaces in general [3], and it feels like time to add my voice to that space not as a perceived ally, but as a member. And some of it is that if being back in the professional advocacy world has taught me anything it’s that representation does matter. So, yes, I would much rather this article continue to collect dust in the annals of my laptop, but this one’s for the queer kids who might need it.[4]
Second, and to me, maybe more importantly, this is “for” (don’t panic, see below) that very same friend who, not 10 minutes after standing with me through all of the above awfulness, introduced me to his other friends as though nothing had happened. For those same friends who helped me navigate a crowded concert hall and didn’t ask why I wasn’t dancing and just let me be with them. For that same friend (one more time), who has held all the parts of me and just been my friend. For my “volleyball” friends who didn’t bat an eye when one night at dinner, I mentioned that I’d “maybe” been seeing this guy. And most of all, for my sister (and really siblings in general), for yes, being slightly surprised when I told her, but for (unintentionally) leading by example. For taking me to all the best places and sitting with me and her (our) friends and all of the dogs and reminding me that for all the gross moments, there were these nights with our friends to come back to.
Written and Narrated by Joel Cartner
https://awarenow.us/podcast/the-other-chapter
I don’t say I’m doing this “for” all of you and mean it in the literal sense; I say it to mean that as long as I’m doing it for all those other reasons, I also get to do it in a way that says to you “I am yours and you are mine” in a way that I haven’t been able to before, and I like that reason better than the other ones.
None of who you are has to be your whole story. None of it has to be “some big world ending conversation”. So dear reader, whoever you are, come as you are, hopefully we’ll have made the world a better and safer place whenever you’re ready to tell whomever the parts of your story you feel you need to.
Thank you, Linden, Hannah, Dani, Ryan, Mike, Jake, and Stephen, for helping me get this on paper. ∎
[1] Hilariously this happens most often before I’ve had so much as a drop of alcohol.
[2] https://pubmed.ncbi.nlm.nih.gov/20031936
[3] https://awarenow.us/anti-everything
[4] https://youtu.be/-4csEkOi3lI?feature=shared
JOEL CARTNER
Lawyer, Awareness Ties Official Advisor & Columnist www.awarenessties.us/joelcartner
JOEL CARTNER is a lawyer and public policy professional with Cerebral Palsy Spastic Diplegia and Retinopathy of Prematurity. Cartner has a background in public health, disability, and education law and policy. He received his J.D. from Quinnipiac University School of Law and his B.A. in Political Science from the University of North Carolina Wilmington. Cartner currently lives in Washington D.C. where he works as Director of Access Policy for the Muscular Dystrophy Association. In this role he works to ensure greater access to therapies, devices, insurance, and specialists for those with neuromuscular diseases by conceiving of and enacting public policy efforts.
www.IamAwareNow.com
PAUL S. ROGERS
‘RELEASE
Release
Genuine, authentic writing/art comes from the artist reaching a different level of self and emotion. This often occurs due to a hardship or challenge that the author has or is going through. Take the thousands of stories shared within AwareNow; they are multi-leveled and there are pearls of wisdom ready to be discovered, no matter which level you are on as a reader.
I've come to realize that art meets you where you are, and at whatever stage you are at in your life. You may come into contact with one of these stories and it strikes you in a certain way. Then you see it again at a different time of your life and it will affect you in a completely different way.
Those stories appeal to us, not in a physical way, but with a magical, emotional touch. It is important to remember that we are not our stories. We are the lessons we have learned from them.
Art surrounds us everywhere we look. In fact, we have gotten so used to it that we don’t always see it. This wasn’t always the case. Arts and literature used to be exclusive to the wealthy classes and gentry, so inaccessible to the masses.
Many of the poets, artists and free thinkers whose work we enjoy today were shunned by society, and in some cases paid for their freedom of thought with their lives. With the rise of the internet, art has never been so accessible. We are the beneficiaries of thousands of years worth of knowledge, beauty and wisdom, all available with a simple search. What I find so humbling is that a quote made thousands of years ago still has the same relevance, insight and impact as if made today.
“The aim of art is to represent not the outward appearance of things, but their inward significance.”
- Aristotle (384 B.C - 322 B.C)
I am a big Linkin Park fan and was devastated by the death of Chester Bennington on the 20th July 2017. The strange thing is that I never met Chester in person, so why did I feel this loss? It is because Chester was able to identify and sing about the significance of things I could not express. His work saved and helped me in those days to discover different parts of myself. I know that I am not alone and that we all have been touched in this way by an artist’s work who we have never met.
“When
you are happy you enjoy the music. When you are sad you understand the lyrics.”
- Frank Ocean
I've always enjoyed listening to music. However, since my accident, it has taken a very different meaning. Music has become the equivalent of a walking aid. It has enabled me to leave the house and participate in some normal activities such as going to the shops or restaurant.
AwareNow Podcast WITHOUT ART
Written and Narrated by Paul S. Rogers https://awarenow.us/podcast/there-is-no-heart-without-art
“…music
One of my invisible disabilities is sensitivity to sound, and it continues to be a daily battle for normality. Triggers include any sudden noise or noises from an unseen source, alarms, loading pallets, dropped items, trolleys and dragging chairs. It has caused me to leave shops and restaurants, usually in a very distressed and agitated state.
I made a breakthrough discovery simply by accident about 3 years ago with the role of music. I forgot to remove my earbuds when I went out. Any health professional will tell you that wearing things that block the noise completely is a bad thing, as it actually increases the sensitivity of the ear when not using it.
I don't listen to music at a high volume. I can still hear the environment around me, but it is not as close. Music gives me a space in which sudden noise appears to blend in with the tune. In essence, I trick my brain by keeping it occupied. For really bad times, I also have noise canceling which means I can fade out most of the environment if I need to.
For me, this is art/music intersecting with accessibility in the very literal sense. It is a must-have wherever I am. It also helps to get my system under control when the triggers are too great and I have a full body neurological panic attack.
So for me, it is true that music can set you free. ∎
PAUL S. ROGERS
Transformation Expert, Awareness Hellraiser & Public Speaker www.awarenessties.us/paul-rogers
PAUL S. ROGERS is a keynote public speaking coach, transformation expert, awareness hellraiser, life coach, Trauma TBI, CPTSD mentor, train crash and cancer survivor, public speaking coach, Podcast host “Release the Genie” & best-selling author. His journey has taken him from corporate leader to kitesurfer to teacher on a first nations reserve to today. Paul’s goal is to inspire others to find their true purpose and passion.
KIMBERLY QUINN ACTRESS, WRITER, PRODUCER & DIRECTOR
Kimberly Quinn is an actress, writer, producer and director. Beyond her captivating performances on screen, Kimberly is deeply committed to her personal wellness journey. She devotes time both in the morning and evening to nurture her well being through her personal meditation practice. A dedicated vegan, she is clear about setting intentions and prioritizes self reflection, allowing her to cultivate mindfulness and resilience in all aspects of her life.
ALLIÉ: You're known not only for your talent in front of and behind the camera, as an actress, writer, producer and director, but also for your commitment to personal wellness. Can you share with us how your meditation practice has influenced your approach to both your professional and personal life?
KIM: So my meditation practice has definitely grown since I began. There's a lot of ways to meditate that I would jump on and learn about, whether it be transcendental or this or that. And at first, when I first started meditating, it was very frustrating. I think for a lot of people, they don't know what's happening. Why am I sitting here? And then, it turned into
KIMBERLY QUINN ACTRESS, WRITER, PRODUCER & DIRECTOR
“It has changed my life because I just feel more balanced. I feel more centered.”
KIM:(continued) through forgiveness, forgiveness for myself and forgiveness for others. And sitting in that and sitting with spirit... that is my jam. That is what I have ended with that I don't think I will ever move from.
ALLIÉ: Beautiful. I love how you mentioned forgiveness not just for others, but first and foremost, for yourself.
KIM: First and foremost for yourself. It’s about connecting to yourself and loving yourself because self-love has a bad rap sometimes. It seems a little self indulgent. It seems like it's all about you, it feels like, but if you don't fill your own cup first, you can't fill others. So, we have a lot to forgive ourselves for. We've all lived this life. We've all made mistakes. We've all grown. We've all done things or whatever traumas, this or that that's entered our life. There's a lot to heal in all of our beautiful spirit beings.
ALLIÉ: I 100% agree. Let's switch gears a bit… Transitioning to a vegan lifestyle, that often comes I would imagine with its own set of challenges. My question now is what inspired you to adopt this lifestyle and how has being vegan impacted your overall well being?
KIM: This is my second go at being Vegan, and I don't say go because I feel like I am a vegan, but the first time it was back in the day when not many people were Vegan, and I really just found myself eating hummus and crackers... never feeling like I had a meal. It was always like snacking and weird. And then because I don't think I was achieving it properly, because I just was starting out, my body was craving meat. It was craving red meat speci fically. So, I listened to it because I always listen to my body. And so I would do it. I kind of thought, "Well, maybe I'm not Vegan..." And then I incorporated some meat again, but not for long. I jumped back on the train. So being Vegan again and knowing now how to properly give myself proper nutrition and have actual meals and have ways of eating... And now restaurants are giving Vegan options and this and that. Not that I eat out often, I don't. But it has changed my life because I just feel more balanced. I feel more centered. I don't have the answer. I don't know if it is for everyone. I know it’s right for me. And I have no cravings. I have figured out how to balance everything, all my meals. And to be honest, I just feel like it lines up with my journey of wellness and my spiritual life. It balances me in my mind and gives me peace in a way where... You know, when you're feeding yourself hormones and whatnot, it messes with you. It messed with me in particular because I had to have surgery. I had a cyst on my ovary. And this was my jump into Veganism, and I never went back because all the research I did was that you get cysts in your body because of the hormones in the food and in the meat. And I said, "Okay, well, that's it. That's it. I'm done. Never again, not doing it." Unless you know where your food's coming from, where its source and whatnot... Even my daughter, she still eats meat, and I get it from a farm with no hormones and then I know the farmer... I do the best I can, although she's going to college. So, I don't know what's gonna happen. I try not to panic about that.
ALLIÉ: As we all do as parents, for sure. The struggle is real. Speaking of which, so many people have a very real struggle maintaining a Vegan lifestyle due to societal pressures, convenience, etc. So how do you navigate those sorts of social situations and stay true to your values while adhering to your Vegan lifestyle?
KIM: Well, I usually eat before I go out. If I'm going to dinner with someone and I don't know the restaurant or I know it's just going to have something like a salad or not many options, I'll eat before I go out. And I satisfy myself that way. You just have to take care of yourself if you want to take care of yourself. Because I also want to go out with my friends, go to dinner and sit with them. So I will get that salad. But I feel satiated because I have already eaten.
KIMBERLY QUINN ACTRESS, WRITER, PRODUCER & DIRECTOR
ALLIÉ: Let's talk a little bit more here on the Vegan pipeline here. When it comes to being Vegan, let’s talk about your favorite… If you could have one dish, your favorite dish to make at home, what is it?
KIM: Well, the thing is for me being Vegan, it's not just a dish. It's specific foods like the sweet potato, the avocado. The sweet potato, I think, would be my go-to because it is always satisfying. But I have to put it with avocado... and then I have to do the herb hummus... and then I have to mix in my greens and my vegetables... and some nuts and seeds. I can't pick one. That's not a good question.
ALLIÉ: All right, I will accept that. And, you know, on the avocado bit, we are huge avocado fans here. For our fiveyear-old, Forrest, I'll make him an avocado bagel. And he'll say, "Mama, please. Himalayan sea salt, please." So he's becoming an 'avocado aficionado', I suppose.
KIM: Oh, that's awesome. I love it.
ALLIÉ: Circling back just to wellness in general, let's talk about your film. In your upcoming film, 'American Dreamer', you portray a character dealing with a complex family dynamic. How do you personally deal with complexities at home and at work to maintain your emotional and mental wellness?
KIMBERLY: I think since I have changed my environment by moving out of a toxic environment, a place where I lived, Los Angeles... For me, it was not good.
So, I think that changing where I live, getting in nature and being more connected to nature, the ground, my food, what's going in my body, my spiritual life, my meditation... It’s having it be a slower pace outside so that the inside can be slower as well. It’s also being able to get my work done. I think that was the key for me. It's getting up and being in a more natural environment to slow me down.
KIMBERLY QUINN ACTRESS, WRITER, PRODUCER & DIRECTOR
“I feel like I’m on my 10th version of myself in this life... And I’m thankful for all of those versions of myself before.”
ALLIÉ: For sure. Let's talk more specifically about this film, where you play the role of Maggie, a complicated and concerned daughter. My question now is, can you relate to this character? This character that you play...Not being an actress, I imagine that must be difficult sometimes... How can I ‘be’ this person if I can't relate? Can you relate to this character?
KIM: A thousand percent... 1000% I can relate to her. She's wild... She's crazy. She's complicated. She has her guards up. She has walls. She has all of this stuff... And every ounce of behavior that she portrayed in that movie, I have portrayed myself. So, I have not always been an even keel person. And I think that is part of my wellness journey. So growing up in a single family home, single mom, very poor... and having to make it, being alone, having to figure this life out... kind of always being in survival mode. I encountered many different scenarios where I would react in certain ways or do certain things this way or that way. So, I feel like I'm on my 10th version of myself in this life... And I'm thankful for all of those versions of myself before.
ALLIÉ: Right, because they brought you to the fabulous version that you are now.
KIM: Yeah... but those versions were fun. When you react and get crazy and have drama in your life... there's something fun about that at that time. You can look back and be like, "Oh my gosh, that was so crazy." But it's a good memory... But now I'm like, "Okay, well that was then, and this is now."
ALLIÉ: One more question for you today, Kim. In life we seem to have this tendency to allocate time for self-care only when there is time left at the end of the day. So, as someone who leads a very busy life, how do you ensure that you prioritize self-care and maintain consistency in your wellness practices? How do you do that?
KIM: Well, I guess being on the 10th version of myself, I've realized that self-care is the first priority. It's not the last. And so I now make it my first priority. If I have to get up early to do it, if have I to change my schedule to it, if I have to whatever, I know that self-care and self-love is the first the priority in my life. I believe it should be in everybody's life. And I know everyone's super busy, but once you learn the importance of it and how you will change your life, it will actually be life changing for you to sit with yourself and to give yourself what you need because no one else is gonna give it to you. No one... You think, oh, my husband will give it to me. Oh, my daughter... Oh, my friends. No. No one's going to give you what you need. You have to do it for you and with you. And if you don't want to, if you don't feel like you're worthy enough, or you feel this enough, or you think other people are more important than you, then I would suggest journaling about that because they're not. You are your most important self on this planet while you're here, living and breathing. And it's an unfortunate thing that no one else is gonna take care of you, because we were all brought up with the Cinderella dream. We wanted to have that. And hopefully you are lucky enough to have a fantastic husband... But it's like Swiss cheese, there are holes that they can't fill for you, and then you get mad because like, "Why aren't you doing it?!" It's like, well, because they don't a) know how and b) it's only something you have the answer to. You just don' t trust yourself at this moment or love yourself enough to fill that void. So, I've made it my number one priority... whatever that looks like and however I have to move my schedule around.
KIMBERLY QUINN ACTRESS, WRITER, PRODUCER & DIRECTOR
AwareNow Podcast
Exclusive Interview with Kimberly Quinn https://awarenow.us/podcast/the-act-of-mindful-living
“Not everyone’s gonna like it. And that okay. Do you like it? Do I like it? I love it.”
ALLIÉ: That's right. Why do we have to give ourselves permission to do that? It's a permission already granted, right?
KIM: Exactly. Permission granted… Who are we asking, by the way? We are our own vessels. So, why are we looking outside of ourselves for things we need? It's inside of you, and the answers are inside you. You have to appreciate yourself for what you do. You have to appreciate your own cooking.
ALLIÉ: I love that.
KIM: You have to appreciate your own cooking… And if no one else likes it, that's on them. As long as you find it to be the most delicious dish, that's all that's important because you put everything you had into it - all your love, everything that you could give... You put it into that dish, and, you know, not everyone's going to like it. It's like acting, like the movies or whatever... Not everyone's gonna like it. And that okay. Do you like it? Do I like it? I love it. I loved my character. I loved playing that. I'm happy. We really do put ourselves last. It's a sad thing, but you know we're all victims because we are not being taught. We're not being taught in society that it should be a first priority. We are being taught to put others first, this and that... And, you know, look, if the plane's going down, you put your oxygen mask on first. You have to put it on first or else you can't help anyone else.
If you're not happy, you cannot help anyone. If your not putting self-care first, which equals self love, by the way... If you're not doing that first, you are not happy. You're just not happy... You are upset about this or that... then no one gets help. Then everyone suffers because you're not happy. And the women, we're important in the family because we run the roost. I know that men think they do, but they don't, right? We honor them, we respect them, of course... that's not what I'm saying. But I am just saying we run the roost. You know the saying, "Mom's not happy, no one's happy." Well, why is that? Because we run the roost. So, you know, we've got to take care of ourselves, so everyone else is happy. If you don't have your self-love, you can't love your child as much as you want to love them, you can't love your husband, your friends, everything... So that's how I prioritize self-care. ∎
Today, you have that follow-up doctor’s appointment. Next week, you’re visiting your oldest friend and have years to catch up on. Next month, you’re taking an eight-hour drive back to your hometown to visit family. Next year, you’re finally going on that trip through Europe you’ve dreamt about. In the next ten years, you plan to hike as many national parks as your busy work schedule allows. With one sentence from your doctor, “You have multiple sclerosis also known as MS”, the clear picture of your future is replaced by a dark void of uncertainty.
On this day, some cry, some sink into depression, some cling to those closest to them, and some deny the truth. After I returned home with my MS diagnosis, I sat on the floor and cried. Then pushed the news out of sight and told almost no one for two years. “You should go to a support group” I was told. Being painfully stubborn, I carried the heavy burden myself. For eight years, of slowly progressing into disability, I avoided receiving support while giving it at every opportunity. Finally, I found a local group, and joined a meeting. Words cannot describe the feeling of being surrounded by a group of people dedicated to talking about MS. In this group I didn’t need to explain my symptoms or why a strong-looking younger person was walking with a cane. I could just be silent and understood. Now, I co-lead an in-person and virtual MS support group named MS-Abilities based out of the Grand Rapids, Michigan area.
Everyone goes through difficult life transitions. Being diagnosed with MS, a lifelong progressive auto-immune disease, is one of mine. I want you, the diagnosed or supporter, to know a few things. First, to those living with MS, I feel you and understand. I hope your community of support is full and can uplift you when you can’t even get out of bed. If you have not been seeking support, my hand is out. If you’re not ready for expanded support today, my hand will be out tomorrow, next month, and next year. This is a community you didn’t ask to be a part of, but this community is here waiting to support you.
For those looking to ease into a supportive environment, I have been delightfully surprised by the MS representation on TikTok. Learning the power of community and support, I increased my engagement in social media to connect with authors and readers, as I pursue writing a novel. Reluctant to sign-up for TikTok, I eventually caved-in and joined the platform. Expecting to find a few authors and many younger people dancing, I was both right and completely wrong. My old assumptions of the social media network equate to shaking my fist and yelling at kids to “get off my lawn”. Thankfully, I happened upon a large, vibrant, big-hearted, compassionate, and beautiful MS community. One that would gladly support you inclusively. Social media groups can be a wonderful source of information, support, and guidance for those living with, supporting, or seeking more information about MS. If you’re unsure where to begin, you can start by connecting with me.
“Whether you have MS, a chronic illness, or anything else that is stopping you from a fulfilled life, support and community is out there.”
Finally, to those supporting us with MS, you being by our side cannot be valued highly enough. I would be nowhere without my partner, stepchildren, parents, and friends. We know it’s difficult watching us struggle when you can’t jump in to help. Please be patient if you’re urging us to join a support group. We must be a ready willing participant in our own care and support. Some get the hint right away and some, like me, take years to become involved. We cannot truly progress without you and cannot thank you enough.
I focus on the MS community, but these concepts go far beyond MS. Whether you have MS, a chronic illness, or anything else that is stopping you from a fulfilled life, support and community is out there. When there is an opportunity to share the struggle, I hope you engage. Allowing others to help me carry the MS burden has been a difficult journey. Now I know, others truly want to help. When someone offers, please take their hand, and say yes. Your whole life becomes fuller and richer when you do. ∎
Disability Advocate, Author & Corporate Healthcare Professional www.awarenessties.us/fox-rigney
FOX RIGNEY is a leader in the Michigan Multiple Sclerosis (MS) and disability community. He holds positions as Committee Chairperson of a MS Community Engagement Committee, board chair of Corewell Health’s disability focused resource group, member of a MS Government Relatiions Action committee, and leader of a
MENTOR, PUBLIC SPEAKER AND AUTHOR
Hello, welcome. My name is Aaron Baker and this the ‘Off Road’ column in AwareNow Magazine, and today I am thrilled to welcome my first guest, my mother Laquita Dian.
AARON: Today we're going to be talking specifically about her new book, 'Rise Together', that of ficially launched last night, April 8, 2024, and it's been a long hard road to get here and to finally have it in written form. This is a work of love. It's vulnerable. It's courageous. It's all the feels. I know them well. It is the prequel story to my book that was published last year called 'The Rebellious Recovery', transforming your adversity into adventure. And 'Rise Together' is the art of climbing out of the ditch. I think what I would love to do, Toots. It's the nickname I call my mom, 'Toots'. There's a story... When I was a little boy, I was trying to avoid some trouble. I don't know. I was trying to be cute or something, and I blurted out the word 'Toots' and that moniker stuck ever since.
LAQUITA: And it did, by the way, completely diffuse whatever trouble he was getting into, and I think that may have been why it stuck.
AARON: Well, now everybody calls you Toots. Well, at least the family...
LAQUITA: And now my 11-year-old grandson, James, who this (Aaron) is his idol, James is now calling me Toots. It's a rare day that he calls me 'Nahni', as he originally named me. So I've got my son, and now, my oldest grandson
AARON BAKER AUTHOR, SPEAKER AND FOUNDER OF ADVERSITY INTO ADVENTURE
“In my helping you, that was the best way to help me. And that’s how we rose together.”
AARON: All right. Well, Toots, how about we start. I will read the back of this book, because this description really brings the reader into this world, your world, our world. So it goes... In a roadside ditch, Laquita Dian was face to face with no one but herself and the dirt. She was demoralized dehydrated and dry heaving due to a three -day alcohol binge. The gravity of her situation is crushing. She had just been released from jail after an arrest for drunk driving. Her son was facing a life-altering spinal cord injury. Her daughter was slipping into the grip of self -destruction. In her darkest moment, an act of kindness from a stranger sparked a realization that would change everything. We rise by lifting others. 'Rise Together' documents Laquita's artful embrace of her role as a caregiver. Through vivid storytelling and raw honesty, she shares her colorful journey from the depths of despair to profound purpose, healing, and selfdiscovery. Led by a clear why, her love for her children, they discovered how to transform their adversities into a driving force of self-improvement and profound purpose. A true alchemy from 'me' to 'we'. This isn't just a saga of struggle. It's a story of hope, full of practical and actionable insights based on decades of hands-on experience with trauma recovery. Lequita's spirit is a lit candle for anyone who finds themselves trapped in the darkness of adversity. Her odyssey shows us that no matter how dire our circumstances may seem, there is always a path forward. Are you ready to rise together? That encapsulates the essence of your story, and hopefully it is a well, as it said, a candle in a dark place for someone else. Well, Toots, you've always been that candle for me. I've said that, and I always will. You've been the beacon, the rock, the bedrock upon which my life has been rebuilt and rede fined. I shared that in 'The Rebellious Recovery' and I speak about that fondly and proudly. Each and every day, we are better together. With that, I'd love to dive into a little Q &A.
LAQUITA: Okay, can I just respond to what you said in terms of my support for you... I wrote about it in the book that I truly don't believe in anyone deserving anything, but in this case you were so horri fically injured. You did deserve every opportunity to just get better. We didn't know what that looked like or what that meant, but I just was committed to giving you that opportunity because if I hadn't, Aaron, you wouldn't have been able on your own. And that was my driving force. So, in my helping you, that was the best way to help me. And that's how we rose together.
AARON: Well, I'm a father now, and so I understand that. I didn't for a lot of years. For long time, I was angry and frustrated and felt like a burden. I felt hopeless without a future. You were the only reason I remain here.
LAQUITA: I know that too. And you have to know that you were the reason I did as well. We're very intertwined like that, and that is the magical love that you only understand when you do have your own child. And you understood that the moment Cayla Mae was placed in your arms. You told me that shortly after she was born your first words to me, "I understand now, Toots."
AARON: Well, I mean, we could just end there... Let you guys read the book. This is so layered and so multidimensional, this could be a very long conversation.
LAQUITA: It is. With both of us crying and then laughing. We do all of it.
AARON: Maybe let's just start with the book writing process. I know for myself that was really challenging to relive a lot of that, to go back and flesh out those emotions, those feelings, those hard times and the good times, but to put it to pen, put your pen to paper. How was that process for you?
LAQUITA: Well, it actually took me a good seven years after I made the declaration that I was going to write it. Remember, I went to a couple of writing retreats, and I made the statement, "I'm ready to write." That was in 2018. And so I tried to write, and I couldn't do it. I wasn't in the place. I had to find my safe place in order to relive it in the way that comes across as real, authentic, not just kind of going through the surface. And so when I did find the place two years ago, I started one day and I didn't stop. And yet, it still took me 15 different drafts after I had said it was done. 15 more runs at it because I kept going a little deeper, a little deep... And in the end it absolutely cathartic, in ways that I had no idea that it would be. Last summer, I was getting some feedback from individuals, and I got some feedback that I wasn't ready for. And I decided I'm putting this on the shelf. I am not writing this book. I can't do that. I can't expose my heart and then expose myself to criticism. So I worked my way out of that, and i realized that that criticism was a gift. It was a gift for me to even make it that much better, to be okay with showing it all. I can't just show
“I’m not interested in snapshots from the mountain top. I want to see the climb.”
LAQUITA: (continued) the highlights. We had done that all throughout our our 24 years of recovery process. We've ridden across the country twice. We've been in marathons. You crossed Death Valley, but we never lifted the curtain. And I decided one day that I'm not interested in snapshots from the mountain top. I want to see the climb. And that's when I got really, really real with myself. Then I was ready to share it, put it down, expose it, and I found pride. I find pride in it.
AARON: Pride and liberation.
LAQUITA: Yes, but I will also say, Aaron, you made my task... in ways it's kind of another flip. We've done this several times in our recovery journey. But on this one, you laid the story out with 'The Rebellious Recovery'. I followed you and just gave my voice in your story. So you really did set a really nice road for me in that respect.
AARON: Well, that's that our dynamic, isn't it? That's how we've always been. I'm thrilled that we're gonna offer these two books as a set because they really should be read together. It doesn't matter which one first, but the voices and perspectives definitely compliment each other. I hope that these books find it into the hands and hearts and minds of those that need it most.
LAQUITA: I'm committed now to doing everything I can to make sure that 'Rise Together', 'The Rebellious Recovery, and our work is exposed. How it lands, I have hopes for that, because I will also tell you what I realized as I was writing. As writers, you were probably told this as well, you're always encouraged to write to someone. Have someone in your mind that you're writing to, so that it gives it more depth. It makes it more live.
AARON: More meaning too.
LAQUITA: Yes. And I had someone in mind for a minute and then all of a sudden I saw... I went back to this vision of this young, lost, and frantic, frankly, young mother in a hospital library late at night, searching the shelves looking for anything that could help. And that mother was me. So I wrote the story for me knowing what I needed, what I would have resonated with in the early days and then all along the to stay the course and stay in the game, but I wrote it for everyone else... for everyone else, but to myself.
AARON: That's powerful. I can relate to serving yourself in a way that allows you the clarity, composure, and vitality to serve others.
LAQUITA: It is really an exquisite understanding when you can find yourself. I always call it being right in the middle of the line. It's like the eye of a storm where it's quiet. Everything is crazy, chaotic around you, but when you're in that eye the storm, you have full understanding, composure and you know what to do. Sel flessness has the same effect for me. I discovered I was always taken aback and I didn't care to hear people talking about how noble I was, what a selfless thing to do... I found myself saying this selflessness thing that you're talking about, it's as selfish as can be because it has as much effect on me as it ever does Aaron. So I have written about that aspect of how true selflessness is every bit as self-serving as anything you can do for yourself.
AARON: This book is loaded. There are many take-home messages. There's a lot for somebody to really find themselves in.
LAQUITA: Well I found in many areas, because it is our story, I found that in certain areas of it I wanted an offering... this was your idea too. you said,"Well, Toots, what if you do some candle light thoughts. You said to me one day, dingding 'candlelight thoughts'.Exactly. And so I've written 13, I call them now 'candlelight offerings' because it's with a little graphic, an open hand with a little burning candle. So that's where they evolved into candlelight offerings. These offerings I'm reading now myself at different times, and I'm really proud of those. They're they really beautiful, and I think, again, how they're going to be received is up to every individual. But that is the component of the insights. You'll find a little bit of everything in here.
AARON: Well, I think that's what we're both intending with our work. It's giving people these little mental cues, these offerings. In my case, they are 'mind seeds'. Planting these in a person's heart or mind so that they are reminders for them when they're in the dark or in the midst of trauma or suffering or pain or what have you. We really hope that this work helps somebody. I've found the greatest purpose, and I know you have too, in serving others.
LAQUITA: Yes I have, and it is a beautiful reminder of our shared humanity and especially when you have no attachment to how it may be received. You just hope that it is in the way that a person needs it. See that again is the cyclical, circular energetic of that is if it helps someone else in their way that too helps me. It's sel flessness to selfish... it is when its pure.
AARON: Cyclical. I say that all the time. Inspiration and motivation is cyclic. We are mirrors for each other. Well again, you and I can talk on this all day. Maybe we should address some of the questions that have been asked for both of us, specific to this book. Maybe we could address a recent question. I've got a whole list of questions right here, but I don't need to go too deep. How about this question... What were the initial challenges and emotions you faced when you decided to become a full-time caregiver? I know it was a moment, but I think I already know that answer... It's not even a decision. It's just...
LAQUITA: Well, it's just not. It is just what you do.
AARON: It just what you do. It's just what I would do.
LAQUITA: That's always an interesting question and I do get that often because for many people it is one of the most difficult decisions they can make because it involves sacrifice. And what do I mean by sacrifice? It changes your way of life. It can even change your home... I went from an 80 acre ranch to a two-bedroom apartment.
AARON: Well, to the hospital room for six months. You lived with me.
LAQUITA: You make those necessary adjustments if you make that decision and you're responding to what life has asked you to do. And then your responding to how your heart must go forward. For me there was nothing... There was no thing in the world that was more important than you. You were more than any thing. And so I call it my love for you, held more importance than any thing. So, it was easy for me to say, what am I going to do with an 80 acre ranch?Sell it! I can get it again someday. I really just started making decisions that supported what I knew we needed to do because I was committed for both of us to not stay in the ditch that we were in. For you to be immobile and for me to be just broken-hearted... it wasn't okay.
AARON: You see, how lucky am I, you know? To have this kind of fierce, unconditional, devoted love, gratitude fills me. It is my mantra. Every day I am grateful for the love and support and friendship and guidance and all the gifts that have been bestowed from you onto me and our family.
LAQUITA: I also have to say that was you wanted to work. You brought your heart nearly all the time, of course not 100%... You had your times. But there is a difference when someone so passionately wants to do what's necessary. Now, if I had to drag you every day, there comes a point where you have to change your strategy there, but as long as you had something to work on and for, that's what you wanted. That was what healed you. That is your medicine. It's a really powerful thing when you realize that this body of yours, of mine, can be so instrumental in helping someone else. It's like a duality, like all of a sudden I'm bigger than just me. And that's a driving force, I think, when people can connect with that aspect of serving. And yes, you're my son, and I am going to do anything, but I can think in an overarching situation when the person giving the care realizes the invaluable nature of their ability assisting somebody else... Man, that makes you feel good. Again, I will always say I am as grateful for you because I'll tell you right now, I'm not sure I would have gotten out of that ditch or if I wouldn't have landed in there again. I wasn't healthy at that time. So, we just did what our hearts needed to do.
AARON BAKER AUTHOR, SPEAKER AND FOUNDER OF ADVERSITY INTO ADVENTURE
“It began on that bike because then we just started aligning to be ‘teammates’ rather than just mother-son.”
AARON: Well, I say this often. I'm truly grateful to the adversity, to the injury itself. I wouldn't change a thing. As hard as it is, as hard as it was and still is today, living with this condition, it has activated us on the most beautiful level of life. It really keeps us grounded into what's most important. It has allowed us to really cultivate the most beautiful aspects of our relationship and of being human. It was only through this injury that you and I both have come to realize ourselves in this world.
LAQUITA: Absolutely. I think that maybe there are chosen few that can learn and just kind of intuitively get to these places, but I truly believe with all my heart for most of us, it takes this kind of hard fire walk that I mean burns every part of you for a long time for you to actually get to that point, because our world isn't designed to teach us that. We're taught many different things and explanations of success, and it doesn't look anything like this. And all of that stuff has to go away to uncover these true essences. So for that I'm grateful. I will never be okay with a lot of the suffering that you do and have to bear. And that's me. That's it. And I will forever hope that science or something comes up with... not a cure, I don't believe in a cure. But something that would just help with some of the stuff you deal with. And that too is our work. You're right on the forefront there, son.
AARON: Well, we do work really hard on behalf of neurological research and being a part of a bigger picture, a solution to resolve spinal cord injury once and for all. We don't know when that's coming, but we know that if we don't do it, who will?
LAQUITA: That's exactly right.
AARON: I just think we kind of answered the other question about how did your relationship with your son evolve throughout the recovery process. I think we kind of touched on that, but if you want to elaborate any on that?
LAQUITA: Well, it was interesting because I did see a shift when we started riding the bike, and I was always hyper aware. I did this by really being in attunement with you. I was trying as best as I could to imagine what it would feel like to be you... a 20-year-old strapping guy that would have just found your wings out racing motorcycles and winning championships... to being like a newborn infant again. So I kept that. It stayed with me and with everything I did for you. And yet that was still a mother-son dynamic, and I could appreciate that you hated every aspect of it.
AARON: Well, the care. It was our choice. We didn't want to have anybody else.
LAQUITA: You didn't want to have care period. So with that, it was when we started riding the tandem bicycle...
AARON: Well, we've got to give some context to those that are watching and listening. A tandem bicycle, a bicycle built for two, became a reality during our rehabilitation process. My body was responding, my legs were beginning to move, I was doing a lot of electrical stimulation, cycling, pedaling in rehabilitation, and one day we saw a tandem bicycle and had the idea that I could be strapped onto the back of it. You would be able to pedal and control the front, and together we could go get some wind in our hair... express all this hard work that we had been grinding for so many years at that point in the gym. So, the tandem bicycle was just an evolution of the rehabilitation process.
LAQUITA: Yes, it was, and I call the tandem bicycle 'my ultimate professor'. I learned so much, we both did, but in terms of evolution of our relationship, it began on that bike because then we just started aligning to be 'teammates' rather than just mother-son. So, we evolved over that mother-son, which gave us more equality. And at that time, I was not a cyclist. I was overweight by about 40 pounds when we started riding. And I'm small, 5 '5". 40 pounds was a lot. And you, obviously, were spinal cord injured and working with a paralyzed body. So, I felt, although very different, we still had our disabilities, if you will, our challenges. And so, it was in that process that we both were rebuilding, and that's when we started merging into the team and it changed our dynamic to be more than mother-son. We became more equalized, and then we really went up another level.
AARON BAKER AUTHOR, SPEAKER AND FOUNDER OF ADVERSITY INTO ADVENTURE
“We will be raising awareness and funds for our three ethos, which is rehabilitation, recreation, and neurological research.”
AARON: It began with only five minutes, and then we progressed to slowly, after months of attempts, to five miles to ten miles, to then participating in the LA Marathon, which is 26.2. We did that multiple times, then ended up riding it across the country in 2007. With some of our closest friends, we all embarked on a tour we dubbed 'The Rise Above Tour' promoting the power of possibility. We rode the tandem bicycle from San Diego California 3,182 miles to St. Augustine Florida, sharing our story, speaking with and connecting to other individuals and their families that have undergone similar circumstances. We ended up doing it again. And we continued the progression where rather than me sitting behind you on a tandem bike, I progressed to my own three-wheel tricycle of which I could pedal under my own power, and instead of riding behind I got to ride alongside you, as we crossed the country again from San Francisco 4,202 miles to Washington DC.
Again promoting our message, we were intending a dream to open our own rehabilitation facility. We had called this facility CORE, the Center of Restorative Exercise. It was our way of creating meaning and purpose out of this trauma. We knew that we needed that type of facility for the quality of our lives, and we were validating it on that bicycle tour that so many others needed it as well. And so I know that we're speeding up this timeline, but on the return of that cross-country tour, the second tour, we ended up manifesting that dream.
We opened up our gym, our facility, January 1st, 2011, a very auspicious day - 1111. And that was, well, it was full of tears, pride, joy, and hard work. Finally, we got to open the door, literally, to a safe space where others could come through the doors and be welcomed into a loving possible environment to change their outcomes like we were. I know how hard you worked that business for the decade long that we we owned and operated the Center of Restorative Exercise. You did it wholeheartedly and unconditionally served thousands in the community, and we ended up coming to a space where we needed to continue to grow and evolve. I was on the verge of expanding my family, and getting married to my wife Katelyn Devine. So we let go of CORE. We sold CORE in 2019, and you're now a grandmother to my sister's boys, James and Mason, my sister Arielle... and now my daughter, Cayla Mae. And we are in a new phase of life, writing these books, sharing our history with purpose, pride and I'd say immense passion because this is what we do every day. We connect with people. We engage families. We tell stories, and we're creating a new story so much so that we are going to take these books on the road this summer and not just any road... Our new business is a nonprofit charity. It's called the Adversity Into Adventure Foundation.
These books, a portion of the proceeds of these books, benefit this non-profit - my book included and the next published work of mine, 'Painted Toes', will as well. It's published by our other business called Pneumind Publishing. It is a curator of compressed knowledge for personal transformation. It is our future, and it is closely aligned with our foundation because ultimately, the greatest gift in the world is our time and our love. And all we can do with that is share it. And so, with our foundation and our organization, we're going to impact the world. I will be cycling again across the United States. Toots will be coming on and off to ride with us, my wife and daughter. We will be raising awareness and funds for our three ethos, which is rehabilitation, recreation, and neurological research. We aim to create opportunities for diverse abled individuals. So, we're on a mission.
LAQUITA: And I think the most powerful aspect of Adversity Into Adventure's mission and statement is that with these three ethos you're not recreating another wheel you are funding the top leaders in all three of those areas. So, you're really doubling their worth, and that is what makes me so excited about the future for Adversity Into Adventure and the importance of it.
AARON: Well, and like I said earlier, my job as an individual is to be more than a storyteller. I am a story doer. Yes, I share my history past tense, but I like to be present tense today, here and now. I call it activating the six inches between your ears. I am like Johnny Appleson. I plant mind seeds in the hearts and minds of those that need it most. That's essentially what our work comprises of today and really what these books are meant to do. These are gifts, opportunities for others to join us and band together as a strong community again to empower others, to tell their stories, to write their book, to join us and lead others out of the dark and into the light. So, we're hell bent. We leave on this tour on June 10th, Toots. It's coming up quick.
Exclusive Interview with Laquita Dian by Aaron Baker https://awarenow.us/podcast/off-road/rise-together
LAQUITA: I know it Is, and at this moment, you're making me feel real lazy by sitting here. I want to get busy.
AARON: Well, it is time. This has been a lot of fun, and as you said...
LAQUITA: So special.
AARON: We can do this for hours. We do this. We have amazing conversations today. I love working with you, creating with you, sharing with you... And so now we're going to put it on the road, and we really hope to connect with you all. So thanks for listening and being a part of this today. Please follow along with this column 'Off Road with Aaron Baker' in AwareNow Magazine. I feel very humbled and honored to be able to share you, Toots.
LAQUITA: Oh, well it's my privilege.
AARON: So, with that stay tuned. ∎
There are days when I’m misunderstood
There are days where I just stood
There were days that I cried
And days I didn't want to be alive
There were days I couldn't stand myself
And days that everyone pulled me down
There are days I can't remember
And a lot of days I wish I could forget
There are awkward days
Where a simple ‘hi’ made me feel afraid
There were so many days that just slipped away
So many days I felt I had to hold back
There were days that scarred me
(There were so many of those actually)
For so long I pushed through each day
Just to move on to the next all these days lead me here
Where you were patiently waiting just as a night where the stars are so perfectly clear
I finally understand why I'm here
And not every day is perfect
I wouldn't say that
And sure I get down , now and then
But what I found with you
Isn't anything I even needed to comprehend
I just know these days I want to remember every moment
Even the slightly off ones
Now there are days I would die
Just to see one more of your smiles
There are days that you can be doing absolutely nothing
And I find myself staring at you
In awe that something so magnificent
Could have ever found a home in me
But I push that fear away
And know you feel the same
Based in New York City, Teddy Cosmo has been releasing music since 2017. Originally working under the name The Sadsaps, Teddy Cosmo has been pushing the envelope of representation for disabled musicians since high school. Born with Cerebral Palsy, playing guitar didn't come easy for the musician, but after years of practice, Teddy has developed a unique playing style that works with the tremors in his hands. Inspired by artists like The Beatles, Nirvana, and so many others, Teddy Cosmo brings a classic indie rock sound to the table with a unique twist.
ALLIÉ: We all fall in love with different people, places and things at different times in our life. When it comes to the guitar, Teddy, when did you fall in love? When did you start playing?
TEDDY: I first fell in love with guitar right around the same time I first heard The Beatles, when I was around 12 years old. After hearing them, that was it, and almost immediately after is when I first picked up a guitar. I had saved up my
TEDDY: (continued) R’ Us. I took some lessons from a family friend, after begging my parents. From that point on, I never stopped playing. Playing guitar filled a void I didn’t even know I had.
ALLIÉ: How has your journey as a musician with Cerebral Palsy in fluenced your creative process and approach to making music?
TEDDY: From a creative standpoint, I definitely like to hide little lyrical easter eggs in my music, that other disabled folks might catch on to. As far as how it affects the process of making music, there's often times where I find myself, and my co producer, Chris Wood, thinking outside of the box to work around occasional physical limitations.
ALLIÉ: Could you share some insights into how you developed your distinctive guitar playing style, considering the challenges posed by your condition? Are there specific techniques or adaptations you've found particularly effective?
TEDDY: A lot of the ways I play guitar is honestly fully out of necessity. For example, I can’t play with a pick because of dexterity issues, so I resort to finger picking. The finger picking style I use is particularly heavy handed, in that it uses my whole hand rather than just the tips of my fingers. When making chord shapes, I’ve found that using my thumb more often than a typical guitar player is helpful, as it really is the only way I have found that I can play bar chords. My mobility in my left pinky is actually pretty limited, so I try to work around that as much as possible. Because everyone’s condition is different when it comes to what someone might need to adapt when playing guitar, the best advice I can give is to be patient and listen to what your body is telling you when you start out playing, and that will guide you in making the changes you may need.
Exclusive Interview with Teddy Cosmo
https://awarenow.us/podcast/strumming-through-adversity
ALLIÉ: As a disabled musician, you've been advocating for representation and inclusion in the music industry. What are some of the biggest challenges you've faced, and what changes would you like to see in the industry to better support artists with disabilities?
TEDDY: I would say the biggest challenge is the inaccessibility at physical locations within the music industry. Venues and studios that require you to walk up or down stairs to even reach the stage, inaccessible entrances to the actual building, and lack of handicapped accessible restrooms are three problems that I run into quite often. Having more accessible venues would be so helpful to artists with disabilities, as it's pretty difficult to break into the industry without the ability to physically play shows or gigs because you can’t even get into the venue. I think that more representation in the media would also be super helpful with disabled artists, as it will bring disabled artists into the public consciousness and in turn offer more opportunities for them moving forward.
ALLIÉ: Your musical influences range from classic acts like The Beatles to more contemporary ones like Nirvana. How have these influences shaped your sound? How do you incorporate them in your own unique style?
TEDDY: I think that my sound fluctuates a lot in general, as does the music I listen to at any given point in my life. For instance, I used to make folk music before moving to soft rock music, and now with the new releases, a heavier rock sound. One of my main goals with making music is to make music that I would want to listen to. If a certain sound resonates with me, then that is what I want to then create and emulate. Because I draw inspiration from so many different acts and those acts are constantly shifting, there tends to be a lot of change and evolution to my style and sound from record to record. it also really evolves as my skills as both a musician and a producer evolve.
ALLIÉ: For talented artists who question their ability because they have a disability, what advice do you have?
TEDDY: Just keep going, and don’t ever let anyone tell you that you can’t do something that you truly want to do. In my experience, disabled creatives are all working towards breaking the glass ceiling that has been put in place by society, that tells us we can’t do things as well as able bodied people can. Every ounce of work that we do as disabled artists is chipping away at that glass ceiling. We need to keep going so that we can eventually break through the glass, and pave the way for other disabled artists, to repeatedly prove these stigmas set in place by society wrong. ∎
Don’t look away because it makes you uncomfortable.
WATER SWIMMER, PHOTOGRAPHER & MS WARRIOR
As bombs rained down on Gaza, the account of Motaz Azaiza came across my feed with blurred images and warnings. At the time it was a morbid curiosity, so I clicked, and clicked, and clicked.
There were images of fathers carrying limp toddlers and babies. Pictures and videos of shuddering children in hospital wards burned and bloody, some missing limbs. Others were sleeping in waterlogged tents, perched above standing puddles and mud. There were pictures of arms and torsos extending from rubble attached to lifeless, crushed bodies. I followed him, something felt horribly different here. Soon after Wael Al Dahdouh, the Al Jazeera bureau chief in Gaza, also appeared in my feed. I saw his face splashed across my phone, the posts detailing a list of his family members that had been martyred. His wife, children, grandchildren, his loss became successively more incomprehensible to me. Despite all the death and destruction, both kept reporting and bringing images to the rest of world of what Gaza and the Palestinian people were enduring.
The more I looked the more I clicked, and the more I saw. My safe Instagram algorithm of sur fing and sunrise photography has been replaced with heartbreaking levels of suffering. People of all ages, day after day, documenting the horrors they were seeing and living through. I suddenly found myself confused. Why was nobody doing anything? It seemed so obvious to me that this indiscriminate bombing was not simply wrong, it was inhuman. How can we call ourselves modern, civilized, and compassionate, and still be doing this to one another?
Then the number of those martyred kept increasing, 1K, 3K, 5K, 10K, 20K, 30K. Numbers that are women and children, civilians, their homes or so-called “safe zones” hit by air strikes. UN workers, humanitarian aid workers, doctors, journalists, first responders, all being killed…what reality is this? Why has the world just watched as if this was some perverse reality show? I don’t understand. Why is TikTok more of a priority to my government than this?
So, it continued day after day. Videos and images of destroyed hospitals, universities, libraries, mosques, churches, cultural centers, homes, more people. Food, water, medicine, anything essential for survival, all simply turned off. The border crossings, controlled by a single country playing gatekeeper, letting essentially nothing through. Why are countries supporting this scorched earth level of destruction and dehumanization by sending more bombs instead of help? Why with full visual access to a genocide happening in real time does nothing happen? We carry the evidence in our pockets and yet we say nothing. We go home to families, hug our spouses and kids, eat dinner, and sleep in our warm beds while half a world away, there is no warm bed, no food, homes, or intact families because they were blown up. Families are digging through rubble looking for each other.
While I feel helpless with what I see, a dear friend of mine reminded me I am doing something. I’m talking about it, I’m writing, I’m sharing. I feel as though one of the worst things I could do is to look away and not acknowledge what is happening and not feel the pain of our collective loss of humanity.
“You decided you didn’t want to feel bad so you turned your head…”
Go look. Turn the internet algorithms on their head and go look for this, witness it. Do not look away because it makes you uncomfortable, it should make you extremely uncomfortable, it should horrify you. Ask yourself if what you see feels right or wrong under any circumstances. What the world is witnessing should not be easy to see for the simple fact that it is evil.
Go look at the children who are now dying of starvation.
Go look at the fathers carrying the lifeless bodies of their children.
Go look at the orphaned kids crying, some left to die alone.
Go look at people burying their parents, spouses, siblings, their children, nieces, and nephews.
This is the world complacency creates.
Go look and see as a beautiful people, culture, and land are systematically and methodically destroyed and erased. The aggression and genocide supported by the people we all voted for and gave so much power to. In the future you will get the opportunity to explain, maybe to your own kids, why nobody did anything… Will you tell them you didn’t know because it made you too uncomfortable to look? Plausible deniability. You decided you didn’t want to feel bad so you turned your head and looked the other way and decided it wasn’t your problem.
Leo Tolstoy said, “If you feel pain, you are alive. If you feel other people's pain, you are a human being.”
Who are we? Who are you? ∎
JONATHAN KOHANSKI
Open Water Swimmer, Photographer & MS Warrior www.awarenessties.us/jonathan-kohanski
Hi, I'm Jonathan, I'm a wanderer of sorts, looking to further enrich lives and share experiences that show we are all capable of truly amazing feats that push my own boundaries and can many times turn heads. I'm a sucker for raw and real stories and attempt to share my own, with all the good and bad through that same lens. I'm always open to finding my next adventure that will help me to continue writing the stories that can help others overcome their own demons. I'm a lover of the water and spend a lot of my free time in it, whether it be swimming, body-boarding, or taking photographs while in it. I was diagnosed with MS at the age of 25 and it has changed the course of my life, not just in a physical sense, but also in my perspective of life, what is valuable to me and worthy of my time. We all have our struggles and triumphs, I'm here to share mine and maybe, help others through theirs.
DISABILITY INCLUSION CHANGEMAKER, SPEAKER & FOUNDER OF INFINITE FLOW
Marisa Hamamoto, a pioneering dancer recognized by People Magazine as one of the ‘Women Changing the World’ and hailed by InStyle Magazine as part of the 'Badass 50’, is an award-winning Transformational Movement Artist, Speaker, and Changemaker. Her journey, marked by challenges such as rejection in dance due to her body, navigating identity as Japanese American, and overcoming a paralyzing stroke, culminated in founding Infinite Flow, an acclaimed nonpro fit advocating for disability inclusion. Diagnosed with PTSD in 2021 and Autism in 2022, Marisa has found clarity in her life’s struggles, fueling her passion to inspire inclusivity.
ALLIÉ: Let’s start with what inspired you to advocate for inclusion. Can you share with us how your experiences of overcoming rejection in the dance industry and navigating your identity as Japanese American have shaped your advocacy for inclusion?
MARISA: Absolutely. So I was born in Japan between a third generation Japanese American father and a Japanese
“Something about moving my body to music made me feel like I belonged.”
MARISA: (continued) up bilingual, bicultural but we ended up living in the United States. I grew up in, actually where I'm living right now in Irvine, California, which is a suburb of Los Angeles. Irvine during the 80s and 90s when I was a kid, was a predominantly white city. And my family being Japanese American and Japanese were a minority. At school, I got picked on for looking different and in the early days, bringing like a Japanese lunch and eating something that was different. And I quickly learned that our differences can divide us.
On the other hand, the highlight of my week was a once a week ballet class after school, where even though I was the only dancer of color in dance class, something about moving my body to music made me feel like I belonged. And just between the belonging and just my love from moving my body to music and expressing myself through movement, I just fell in love with dance, and I threw myself into building or aspiring to build a professional ballet career when I was a teenager. But the moment I kind of stepped into this, “okay, I'm going to become a professional ballerina”, kind of mindset, and took myself to auditions and productions and all sorts of things, I got rejected again and again for the same reason, which is that I did just didn't have the right body or I didn't have the right skin color.
But in my gut, I knew that dance was a universal language that belonged to everyone. So I lived in this duality between, okay, dance is a universal language that belongs to everyone, but why am I getting a different message in this dance community, in this dance world where dance seems to only be accessible to a few people. I got pretty burnt out but in my senior year of high school, I got a scholarship to this performing arts high school called the Idyllwild Arts Academy, and this was a boarding school up in the mountains two hours away from Los Angeles where I lived in Irvine. And this was one of those schools where diversity and inclusion was celebrated. It was one of these rare schools where gay kids got to be openly gay.
There were many international students and so multiculturalism was really just celebrated. We had all kinds of food tasting parties from different countries and everybody just dressed however they wanted. And everybody was a little unique, it's an art school. Kids were studying either dance, theater, music, creative writing, visual arts, and so it was just a very unique bunch of students. Anyways, I was in the dance department and again, made some really awesome friends in my class, and I just felt like, wow, this was the way. This was a great way to end my childhood. The very last dance concert of the year was a student choreographed concert. It was an opportunity where the senior dance students which included me, there were 14 of us, had the opportunity to choreograph a six minute work.
So we were assigned to, on a piece of paper, write down our cast, who we want dancing in our piece, the music, and just turn that into the chair's office. And so we did that and then a couple days later when casting was going to be announced, I decided to sneak into the dance studio a little earlier than everyone because I was just really anxious to see which of my classmates was going to select me for their work. But when I arrived at the studio and looked at the bulletin board, my name was nowhere except for a choreographer for my own work. And it really stung because these were my classmates. I mean, it's one thing to be rejected by authority and institutions, it's another thing to be rejected by your own peers, and it really hurt.
And I just couldn't believe this was the way that my childhood and my high school years were going to end. So I felt defeated. But then when I looked at the casting notice for maybe a third or fourth time, I noticed that seven other students, mostly from the lower grades, were left out. And I said, hmm, this does not seem right at all. This is a school that values diversity and inclusion, this is a student dance concert, and everybody should be able to participate. This is not right. And I just kind of fumed up on my own at that moment and, I don't know, just got so heated up about how wrong this was that I took a pencil out of my backpack and wrote down all seven names into my own cast. And two days later, I got called into the chair's office saying, okay, we were trying to figure out what to do because there were seven students excluded, and we thought that we would have to have one of our faculty members choreograph a piece for them and this and that, but you solved this.
MARISA: (continued) The student choreography concert was a success. I recently actually looked at the six minute work I created, and it's no masterpiece, but I did a good job really leveraging the unique talents of each person I had. And yeah, I still keep in touch with these students. Anyways, I was named Dance Major of the year at commencement, but the real win is that since I graduated high school, there is a policy placed in the dance department ensuring that all dance students are included in the student choreography concert. And it's been 24 years since I graduated, and that policy is still there. At that time, I didn't know this, but this was the moment that I realized that my small actions can lead to big change. It was just me taking on a pencil, writing down seven names. That was the small action I took. So that incident when I was 18 at that time, eventually led to the work I do today.
ALLIÉ: An amazing story. And for anyone who's not seen this short film ‘Changemaker’, they need to see it. It’s such a powerful story about how all of this work of yours began. So let's switch gears a bit. When you suffered a spinal stroke, paralyzing you from the neck down, you reflected on that moment. I watched a piece where you said, “I thought my life was over at that moment, because not being able to walk meant not being able to dance.” What did dance mean to you then, and what does dance mean to you now?
MARISA: Yeah that's a really, really good question. So dance, at that time when I had a stroke, I was 24 years old and I was a senior in college and I was secretly still pursuing this dream dance career. For me, at that time, looking back, I had kind of lost touch of the essence of what dance is at the core, which is a form of self-expression, movement expression, it's a culture, it's a way that we express our culture, it's also a ritual. Dance can be a ritual depending on what type of dance this is and how dance is used. But at that time, for me, it was almost like I was trying to prove myself that I can be a professional dancer. And that was my narrow perception of dance. I was trying to just pursue this one path dance career and not really seeing anything around that.
And for me at that time, I only saw dance to be something that had to look a certain way, that I had to move a certain way. What caused the stroke is unknown but I will admit that the three months, four months prior to the stroke, I was far from being healthy. And we're talking like, I wasn't sleeping well, I was barely eating because I was trying to diet down for upcoming auditions. I was in school full-time. I was also working part-time. I was trying to make ends meet. I was just doing a lot of self-sabotage. My mindset was just not in a healthy place. And I'm a pretty organized person but if you looked at my room at that time, it was a disaster.
“There’s many things that stroke taught me but definitely, this sense of gratitude…”
MARISA: (continued) And not only that, my mom actually found mold out of my apartment after she came over. And you know, after I got into the hospital, she stayed at my place. But she came crying saying, oh my gosh, you've always been such an organized person, I've never seen a room that was so messy. This is so not you, but not only that, I found mold. Definitely you’re not taking care of yourself. So anyways for me, I saw the stroke as a wakeup call. When the doctor gave me a diagnosis, he definitely was like, we don't know what's going to happen. And I didn't know what was going to happen either. And yes, I was completely paralyzed from the neck down, and so it was kind of like this battle in a way.
But at that time, never did I think, oh, I'm paralyzed from the neck down, I can still dance it. That was so not what I thought. Obviously, I have different perspectives on that now because I believe every single person has a dancer inside of them, you know. And it's almost like I was born on this earth to help people discover the dancer inside of them. And people kind of know, okay, if you hang out around Marisa at one point, she's going to make you do something uncomfortable and she's going to get you to dance, and you're not going to even know that it's even dancing. But she'll get you to move. There's a span of eight years between my stroke and starting In finite Flow. So it's not like, some people think, okay, I got out of the hospital, and two months later I created this organization. I'm like, no… There was a lot of time unpacking life and becoming confused and looking back, I mean, yes, a lot of autistic tendencies that kind of piled on itself too.
ALLIÉ: Yeah. Well, and I love how you just said a lot of time ‘becoming confused’, right? Because sometimes we feel like we get it, we understand it, we see life one way, and then something traumatic happens, and it is this, “Oh, now I'm confused…” It's like the confusion almost unravels, right?
MARISA: Yeah. I will say, to this day, every single time I go and dance, I start with gratitude, I end with gratitude. There's many things that stroke taught me but definitely, this sense of gratitude, this gratitude to live, gratitude to move, gratitude to breathe, like little tiny things that I used to think were not important became very, very important. So it was definitely a turning point. Health came first. So it took me about three and a half years to come back into dancing but when I made a comeback, I chose a form of dance that I happened to be pretty good at. I’m naturally pretty good at ballroom dancing, salsa dancing, kind of the partner dance family.
Somehow, no matter what form of partner dancer dance I learned, somehow intuitively, it came naturally to me, and I enjoyed it. And that's a big thing too, I had lost the joy of dancing. Before the stroke, dance was not a joyful activity. It was like this thing where either I achieved this one goal or I'm a failure. That's how I labeled it. Now, it's interesting because it's like I'm on the other side of all of that.
ALLIÉ: Yeah. Now such a different intention with the way you move and why you move. So again, miraculously you recovered from your stroke, but you had said that you were still paralyzed inside even healing externally. What was it that caused the internal paralysis, and how did you overcome it?
MARISA: So, I just want to put a trigger warning for any sexual assault survivors out there… The stroke had triggered a lot of trauma from the past. Yes, there was a part of me that had PTSD over dancing again, because the stroke happened inside of a dance studio, and happened during dance class. And actually, the day that the stroke happened, I was having a really good dance day where my body just felt like it was flying through space. And so I definitely had PTSD for dancing. But what happens and anybody who's gone through any trauma knows this; one trigger can lead to another trigger, to another trigger, to another trigger. There's a ripple effect. So the stroke being kind of a big, kind of trigger, it triggered a lot of past trauma, and a lot of the trauma was related to dance.
MARISA: (continued) It was a lot of the rejection, a lot of being told that my body wasn't enough, and I even kind of got thinking that the stroke happened because my body wasn't enough. And along the lines of that, I was sexually assaulted by one of my ballet teachers who also didn't believe in me. And so it almost felt like a curse was put on me. So, again, PTSD and triggers can be kind of a ripple effect now. And at this time, I didn't have PTSD in my vocabulary, myself, my parents, and no one around me had ‘mental health’ as anything in their vocabulary or in their awareness. And so I kind of went through this kind of dark period not knowing what was going on, but I just knew that I was just living in a lot of fear and terror.
It's like, I didn't want to speak to people. I did the bare minimum to kind of get by. And at that time, I did receive a scholarship to grad school and it just kind of gave me a place to go so I did that. I worked part-time at a job where it didn't require too much contact with people. I look back at those three years and it was like, deep down inside, I wanted to dance, I wanted to move forward in my life, but it's like my body would not want to take any action whatsoever.
ALLIÉ: Thank you so much for sharing so personally and so authentically. Let's talk about the return. When returning to dance, you accidentally came across wheelchair dancing. I would love to hear this story. Will you share the story of your first dance?
MARISA: Actually, when I came back to dance, it was actually through salsa dancing. I was kind of all on this track of, okay, I finally finished grad school. All right, let's get on with life here. And that was actually when I accidentally found salsa dancing while attending a business holiday party. And this was still in Tokyo, there's about a hundred Japanese people, ages forties, fifties, sixties. I was in my twenties and so I was young. And there was a salsa dance performance in the middle of the party. And afterward, the couple said, all right, everyone onto the dance floor, let's all learn the salsa basic step. And you have to understand, I don't mean to put a stereotype on my Japanese culture, but Japanese people are not the type to get onto the dance floor and just start dancing at all.
But let me tell you, this room was full of people just dancing their hearts out. And I was kind of one person within the hundred, and I'm looking around and it didn't really matter if someone was doing the steps right or wrong, everybody was just having a great time. And I looked around going, oh my gosh, this is dance. I haven't been dancing for over three years because I've been scared to dance, but I'm dancing right now, and everybody around me is dancing too. And in full honesty, at this time I was still kind of in this place where, okay, I went to this personal development seminar, but I had really lost purpose in life and I was a little suicidal just to kind of get to the point. I think someone recognized that and kind of dragged me to the seminar.
So during this holiday party in which I started dancing, that was actually when I was kind of brought back into my body, and it was through moving my body to music dancing that I realized that I mattered, and that I can't just end my life now. So anyways, I ended up taking myself to a salsa class and then went full out and tried to figure out how to become a professional ballroom salsa dancer and teacher. I made that happen. So I moved back to California and for a while I was kind of teaching dance locally and just keeping it easy. But eventually I moved to LA wanting to really pursue, again, give myself another chance to this professional dance entertainment career that I've wanted. So I moved to LA, continue to teach.
But when I started to audition, get an agent and do the whole Hollywood thing, I was again, kind of hit with this wall in which I was told okay, Marisa, you just don't have the Hollywood, look, Marisa, you're Asian and ballroom dancers on TV are not supposed to be an Asian. And so suddenly, I'm in this place where I'm being rejected all over for what I look like. But this time, I really was like, hmm, this doesn't seem right. There's nothing wrong with my body, there's nothing wrong with my ethnicity. What's wrong is society and the biases. So then again, I kind of got fired up over, this is not right. I got pretty down on myself for all the rejection.
So one day as I was meditating alone in my apartment, I remember taking out that pencil when I was in high school, and I asked myself, who was left out, what can I do and how can I make a difference? And asking those questions led me to doing a lot of Google searching on dance paralysis, dance disability. And then I went down this rabbit hole
DISABILITY INCLUSION CHANGEMAKER, SPEAKER & FOUNDER OF INFINITE FLOW
“I was diagnosed with autism at
ALLIÉ: So being diagnosed with invisible disabilities, like PTSD, like autism, that must have presented yet another set of unique obstacles. How do you leverage your platform as a renowned transformational movement artist and speaker, and to raise awareness about these often misunderstood conditions and work to break down the stigmas that surround mental health and neurodiversity?
MARISA: First of all, when I started Infinite Flow in 2015, my understanding of disability was very, very narrow. I had never heard of the word neurodivergent or neurodiversity. I had heard about autism, but I couldn't explain to you what autism or ADHD or any of these mental health conditions or neurodivergent kinds of diagnoses are. My heart was in the right place and over the years, I learned a lot about disability, a lot about inclusive language, a lot about accessibility. It's something that just came with the territory I was in. I wanted to make everything I did inclusive and accessible. And so I constantly just studied, learned, listened, and along the way, I started to learn about autism.
And the more I learned about autism, the more I was starting to feel like I was checking boxes. So then two years ago, I finally decided to get assessed at the age of 40. And surely enough, I learned after leading a dance company that advocates for disability inclusion for six, seven years, that I'm autistic. And if I were to be very honest with you, it took me about five, six months until I was able to comfortably say that I was autistic. And initially I was like, whoa, hold on here. I've been leading a dance company that fosters advocates for disability inclusion, and here I am, I learned that I'm autistic and I'm not comfortable saying that. So I had to really sit with my own ableism.
And along the lines of that, I listened to a lot of podcasts. I read a lot of books around autism. I also listened to Perspectives about Disability that previously I did not because I didn't quite jive with how they were bringing up disability. So I listened to a lot of different perspectives and I started to understand the larger disability landscape. And I also started to recognize that there were many autistic folks that were coming out later in life. And then social media became kind of this place to learn more. I just wanted to learn more about autism. I wanted to learn more about neurodiversity. And so I was starting to spend quite a bit of time mostly on Instagram and just kind of seeing what creators were creating and saying, and reading captions and sharing a lot of shared personal experience.
And it was helpful because sometimes I'm like, okay, yeah, that's me. But anyways at the same time, I didn't see anyone that looked like me. And looked like me, meaning, someone that was female cisgender, Asian American, heterosexual. There wasn't anyone that looked like me. And I was like, “Are there less autistic Asians out there or are we just not seeing them because there's just so much ableism within the Asian American community?” And it was definitely the latter in which there's a lot of shame, probably more shame in the Asian American community around autism and any type of disability than probably any other, and nobody's talking about it because nobody wants to talk about it. For me, representation is powerful. Like my first idol was Kristi Yamaguchi because she was the only Japanese American woman that I saw on TV.
And being in the disability community, all of my folks around me that are disabled, tell me so much about how important representation is, to see themselves, to see someone like themselves in the media, on TV and in film. It's a powerful thing because it's an acknowledgement that we exist. So then that planted a seed for me to go, okay do we want to talk about autism on social media? If I don't do it, then that also means that there might be another Asian out there who doesn't get diagnosed when they should, or maybe have a lot of internalized ableism. And I'm like, okay, I'm already a disability inclusion leader, if I don't do this, then nobody's going to do it. So then that got me to show up and also come out with my age.
That was a big thing. I had been hiding my age all this time. Then suddenly, like in the middle of January, I was diagnosed with autism at 40 and I'm 42 now. And the more I actually said that, the more comfortable I actually became with my age. And so then I kind of found my voice, and it's been interesting because some videos have gone viral and suddenly I have a lot of neurodivergent folks from around the world suddenly following me, commenting, DMing me. And some of it's been a little bit overwhelming because I get a lot of questions around, oh my gosh, how can I get diagnosed? And I'm like, oh God, there's not enough resources. And so along that path, I was introduced to Proof
Podcast
Exclusive Interview with Marisa Hamamoto https://awarenow.us/podcast/resilience-in-motion
MARISA: Absolutely. And so what proof positive is doing is just so important, and I've seen this organization going international. I've had a couple meetings with a community that's built out in Asia around autism. And again, the stigma is so big, but again, the focus is so much on education and employment, and I planted a scene to them saying, hey, what about quality of life as a whole? Is this just about trying to conform to a standard that was set in the world that shouldn't be the standard of achievement? Or can we build a healthier society through giving people the permission to be well and permission to be happy and joyful? That's the baseline.
ALLIÉ: I like how you referenced the fact that, as a society, so focused on the doing of things, of being educated, being employed, but what about the human being, just being present? So one more question for you today, Marisa, for those who feel rejected and on the outside of an industry that they want to be part of, they want to be included in, but they feel they are not because of their disability, what advice do you have for finding a way in?
MARISA: First of all, just know that you are not alone. The disability community, if we just take it statistically, that's one in four Americans, 16% of the global population. So just know that you're not alone. You can find communities on Facebook, on social media, the Proof Positive Autism Wellbeing Alliance. If that's something that perhaps interests you, you can find communities everywhere. And again, if you're lost, just go ahead and DM me and I can direct you to one. So I think being in a community with others who are going through similar experiences is a start. Also for anyone that does feel like they just don't fit that box or they just feel like they're excluded, it probably also means you're meant to do something bigger. Like it's just a sign of, hmm, you're just a little different, but somehow you probably have a way of thinking that the world probably needs. And so don't think, “there's something wrong with me”, but rather, hmm, what's extraordinary about me, is maybe the question to ask.
ALLIÉ: I love that. I love that positive directive that we have to give ourselves.
MARISA: Yes, positivity is important. And I won't lie, just in the last couple days where one of my videos on Instagram went viral, I got my hate comments, I got the negative stuff, and I don't know why, but there's a little bit of this thing where people think that the whole world is negative and that's the normal, but that is not the normal. That should not be the standard. And so I would like to think that just like Proof Positive, we keep on looking at the good, we keep on thinking that the cup is half full, not half empty, and we can train our brains and our bodies to be happy and be joyful. ∎
Learn more about Marisa and her work online: www.marisahamamoto.com
Follow Marisa on Instagram: @marisahamamoto
Explore more about Proof Positive: www.proofpositive.org
DR. TODD BROWN FOUNDER OF THE INSPIRE PROJECT & CO-FOUNDER OF OPERATION OUTBREAK
The recent death of Tommy Smothers of the Smothers Brothers prompted me to read about his life and career. In doing so, I have to say I was shocked at how our forgotten history profoundly affects our behaviors. Mr. Smothers’ death, or more so his life, should be a staunch reminder that not only have we been here before, but we are being manipulated to run off a cliff like lemmings (even though they don’t do that) following a crowd screaming, “We can’t joke about anything anymore.”
Fueled by social media, the modern news cycle constantly churns out controversies, placing artists and entertainers in the crosshairs. The prevailing narrative suggests that America is amid an unprecedented battle for its soul, marked by deep polarization and a relentless Culture War. However, if we look at history, it reveals that this isn’t new. What is new is that while in the age of newspapers, unsettling articles were read and discarded, in today's world, social media amplifies controversies without oversight, driving the "us versus them" narrative.
Before moving on, I must acknowledge we live in a world dominated by the internet and social media, finding ourselves having to navigate a landscape of perpetuity where every digital footprint is permanent in cyberspace. What goes online stays online, regardless of attempts to erase it, sets the stage for exploration into the realms of censorship and 'cancel culture.' But keep in mind this is not just a modern-day clash of ideals. It's a nuanced journey through the historical roots of society and entertainment and the ongoing battle against "wokeness." I am not attempting to reconcile contextless snapshots from the past with the standards of our present moment. I am examining how yesterday’s perils of censorship compare to today’s.
“Culture War" encapsulates a philosophy that paints one side as virtuous and the other as evil, a mindset historian Richard Hofstadter discussed in his 1965 book, "The Paranoid Style in American Politics." This philosophy, driven by a sense of impending doom and a need for all-out resistance, has deep roots. This ‘recent’ campaign against "wokeness" mirrors historical patterns of backlash against social progress. From the Civil Rights Movement to contemporary debates on transgender rights, conservative elements have consistently framed societal shifts as threats to traditional values. The rhetoric and tactics employed by figures like Florida Governor Ron DeSantis find precedent in the attempts of segregationist politicians to punish progressive corporations, media outlets, and civil rights groups during the 1950s and 1960s.
To understand the roots, let’s turn the clock back briefly. In the 1960s, political strategist Paul Weyrich shaped the evangelical movement by exploiting Culture War anxieties to consolidate political in fluence. At one point, he was associated with the John Birch Society, which opposed Martin Luther King Jr. and Civil Rights. With financial backing from Joseph Coors (yep, the beer), Weyrich established influential conservative organizations such as the Heritage Foundation in 1973, the Moral Majority with Jerry Falwell in 1979, and contributed to the formation of the Christian Coalition with Pat Robertson in 1989, marking a significant influence in conservative politics.
DR. TODD BROWN FOUNDER OF THE INSPIRE
“We are being sold a bill of goods in which we need to organize a resistance to all this cancel culture.”
Weyrich's organization later spawned the Center to Protect Free Speech (CPFP), funded by Charles Koch, who was accused of manufacturing Culture War, i.e., moral panics. The CPFP has paid provocateurs to incite reactions on college campuses, which are then used to argue that the campus opposes free speech. This ploy helps exploit divisions among leftist constituencies and echoes historical debates about free speech in comedy, reminiscent of the challenges faced by shows like the Smothers Brothers Comedy Hour in the late 1960s.
The abuse of the Smothers Brothers Comedy Hour during the late 60s in letters to the editor mirrors sentiments found on modern social media, as they faced backlash for comedian David Steinberg's comedy involving the Bible. The hate mail contained things like, “I am surprised you lousy stinkers have lasted so long. I hope you get the [N-word] shit kicked out of you. I will come down and butter your Matzahs with Arab shit.” CBS even received a letter addressed to the “Gay Smothers Brothers” that read, “Why do you queers continually show this so-called new generation? I, for one, am fed up with looking at [N-words], [N-word]-lovers and long-haired fruits on your and every other show on TV.” The mail received was so out of hand that numerous envelopes contained razor blades, which led to the program's removal from the air.
It didn’t stop there. Comedy continues to be a battleground in the Culture War. In the mid-20th century, comedians like Richard Pryor and George Carlin faced censorship and legal repercussions. Currently, however, the "you can't joke about anything anymore" narrative is not accurate whatsoever. While there are new taboos, television has more freedom of expression today than ever. For example, no one is getting arrested for using profanity on stage like George Carlin did in 1972. Also, we can hear the word “shit” in commercials, talk shows, and on awards programs when it’s about the sitcom Schitt’s Creek (don’t give me the excuse that it’s spelled differently, it's still pronounced ‘shit’). A show with a title like that would’ve been unthinkable a few decades ago.
How about the show Euphoria? Its depiction of explicit drug use and full-frontal nudity are examples of how taboos have been shattered even as new ones are established. Yet, through the daily reinforcement on social media, the orchestrated Culture War talking points are amplified as we are told precisely the opposite is occurring. We are being sold a bill of goods in which we need to organize a resistance to all this cancel culture. It’s now or never because time is running out. If we don’t act, we are doomed!
Ricky Gervais continually levies brutal jokes about transgender people. Did he get canceled? No, he gets rewarded. Netflix airs another comedy special in which he jokes and makes light of terminally ill kids. Dave Chappelle jokes about gay and trans people. Did he get canceled? No, he gets rewarded by having another comedy special in which he jokes about trans people and punching disabled people. Matt Rife jokes about beating women. Did he get canceled? No, he constantly appears on podcasts and social media complaining about being canceled. At one point, he commented directly to a six-year-old that Santa Claus isn’t real and that the child’s mother is a sex worker. When people complained about his jokes, Rife responded by sending a link to a website that sells special needs helmets while lamenting about being canceled and not being able to joke about anything anymore.
It doesn’t stop there. In the past and present, we are told that people are getting censored or canceled left and right. Think of what has been said and written:
“Nothing short of a great Civil War of Values rages today throughout North America. Two sides with vastly differing and incompatible worldviews are locked in a bitter conflict that permeates every level of society. Bloody battles are being fought on a thousand fronts, inside and outside government.”
“I think the people today in the humor field—their limits are much greater. Today, we have many pressure groups and many self-appointed people who are ready to criticize. These are very touchy times.”
(For the record, those quotes are from 1961 and 1955.)
The anti-woke movement's strategy, rhetoric, and portrayal of impending ideological war is much like when segregationists targeted interracial casts on television and progressive corporations supporting civil rights. Today's anti-woke advocates focus on boycotting companies perceived as promoting progressive values. The fear of language sensitivity being equated with dangerous political correctness, the accusation of brainwashing by progressive forces, and the narrative of ideas being forced down people's throats were all prominent elements in the segregationist backlash against racial equality.
Ultimately, the Culture War, rooted in historical resistance to social change, continues to shape contemporary debates. The war on "wokeness" and the broader Culture War are not new phenomena but the latest iterations of enduring backlash politics. Understanding this historical context provides valuable insights into the recurring patterns of societal tension. It offers a lens through which to analyze and navigate the complexities of the present cultural landscape. So, before we follow the imaginary lemmings off the cliff, we should take time away from social media and learn some history. ∎
DR. TODD BROWN
Awareness Ties Columnist
www.awarenessties.us/todd-brown
Brown is a winner of multiple education awards, including the U.S. Congressional Teacher of the Year Award, U.S. Henry Ford Innovator Award, Education Foundation Innovator of the Year, and Air Force Association STEM Teacher of the Year. Dr. Brown is the creator and founder of the Inspire Project and cocreator of Operation Outbreak, which was named the Reimagine Education Award for Best Hybrid Program in the world. He is also an Education Ambassador for the United Nations and an Educational Ambassador of the Center for Disease Control (CDC). www.IamAwareNow.com
TAL ANDERSON ACTOR, FILMMAKER, AUTHOR, ADVOCATE FOR CHANGE & AWARENOW OFFICIAL AMBASSADOR
Tal Anderson and Michael Richey White met each other and became friends after both working on the Netflix comedy-drama series ‘Atypical’. Both autistic, they know firsthand what it’s like being a child who may be just a little bit misunderstood most of the time. Their book series, ‘OH, TAL!’ is for all kids who feel a little misunderstood to let them know that it’s okay to think on a different track.
ALLIÉ: A book series for kids who may feel a little misunderstood most of the time, ‘OH, TAL!', is about an autistic kid who does things a little differently. This series begins with your first book, ‘OH TAL! - NOT TODAY’. Please share what this story is about.
TAL: The series was created for all kids who feel a little misunderstood because they don’t look at the world the same way as other kids around them. In the story, Tal is living life seeing things through a creative lens. In this first book, Tal’s parents are preparing for a special day and don’t seem to understand why Tal is doing things that seem to be working against them. In the end, Tal’s parents discover that their child’s mind works on its own path. Things seem one way on the outside, but ultimately, Tal’s imagination, creativity, tenacity, and independence show that intentions may not always be what you think. Tal wins over hearts while con firming that it’s okay to be different and to do things your own way.
ALLIÉ: The relationship between Tal and her cat, Winnie, seems to play a signi ficant role in this story series. Can you elaborate on how this dynamic reflects the broader themes of understanding and acceptance explored in the book?
TAL: Well, I wrote the book, so I wasn’t going to do it without including Winnie, who is my current cat. I think that many autistic people share a sensitivity to animals, and I’ve had a special relationship with my pets my whole life. I especially seem to have a connection to cats, and I think maybe it was because I didn’t have to explain myself to them. In the book, Tal and Winnie are like peas and carrots, and even when others around Tal don’t understand — Winnie always does, and she accepts Tal for who she is, unconditionally.
ALLIÉ: As both of you are autistic, how did your personal experiences in fluence the creation of the 'OH, TAL!' series, particularly in crafting narratives and illustrations that resonate with children who may feel misunderstood?
TAL: Growing up I never connected with a character in media who I thought was like me. It’s important that no matter who you are, everyone deserves to pick up a book, turn on the tv, or sit in a movie theater and see a character who they can relate to.
When I was little, I didn’t know I was autistic, but I felt really misunderstood. I didn’t speak until I was almost four years old, so I couldn’t verbally explain myself to people. So everything I did had to be interpreted by someone.
TAL ANDERSON ACTOR, FILMMAKER, AUTHOR, ADVOCATE FOR CHANGE & AWARENOW OFFICIAL AMBASSADOR
“I wanted kids who felt like Michael and I did as kids — to feel like doing things your own way is totally fine, and that they’re not alone.”
TAL: (continued) Most of the stories in the book, and Tal’s experiences, came from my life, but they’re just examples of how behaviors and actions aren’t random. Tal is just being Tal, and doing things through ‘Tal eyes’, but the interpretations of these actions seem to always be based on the perspective of the person watching. I wanted kids who felt like Michael and I did as kids — to feel like doing things your own way is totally fine, and that they’re not alone.
MICHAEL: For me, I am trying to draw this character version of Tal while being true to who I understand the real Tal is, but I’m also able to “draw” from my own experience growing up (pun intended). I relate so much to this person that Tal is writing. Every page has some version of my own lived experience so it’s not too difficult.
ALLIÉ: As an actor, Tal, you use your platform to advocate for inclusion and authentic representation in Hollywood. Now as an author, what do you hope to accomplish with your advocacy?
TAL: The biggest difference in goals is that with this book I’m trying to reach younger kids in hopes that they can connect to a character who they feel is a lot like them.
There aren’t many books where creative, misunderstood kids can relate to the characters, and although there are some great ones, there definitely aren’t many choices of books with autistic characters in them, especially books created by actual autistics.
Representation is really important, especially for young kids, because representation makes you feel seen… and feeling seen helps you believe that you belong.
ALLIÉ: Michael, your artwork brings the characters to life in 'OH, TAL! - Not Today!'. Could you share some insights into your artistic process and how you visually captured the essence of Tal's story and character?
MICHAEL: I started with some sketches of what Tal and Winnie should look like and then shared them with Tal to see which she preferred and luckily we both loved the same ones so that was the starting point. Once I got those established, it is easier to continue drawing that person and their cat through the series. Then for each page (or spread of pages) I draw up what I think it should look like, then share it with Tal, she gives me notes and I adjust. I don’t plan out the drawings too thoroughly - although I should do it more. I tend to just start drawing the scene that first pops into my head and I often don’t account for enough space for the text or get everything quite lined up the right way on the first pass, so I always make a bunch of little adjustments before I sit down to paint. I prefer painting in actual watercolors than digital mediums. There’s a whole different feel when you’re pushing around actual pigments on paper than using the computer or iPad. I do make edits in Photoshop after I’ve scanned in the artwork.
MICHAEL RICHEY WHITE ILLUSTRATOR & GRAPHIC ARTIST
ALLIÉ: This series will speak to so many kids and so many parents as well. As the author, what would you like to say to kids, Tal? And Michael, as the illustrator and a parent yourself, what would you like to say to parents about this series?
TAL: I’d like all kids to understand that being exactly like all the other people around should never be the goal. Being yourself, especially as a kid, can be really hard and you may not be understood by everyone —- but it’s what makes you unique, and interesting, and it’s okay. Also, cats make great friends! I also hope this book shows parents who might be worried that their kid doesn’t think or act like everyone else’s, that it’s okay to be different, and help them believe that with support everyone can be themselves and shine in their own way.
MICHAEL: I think it’s so important for every kid to be able to see themselves written and drawn into a book, whether it’s their physical appearance, their experiences in life, their family or place they live. I believe this one is filling a gap for many. There have been some great books about autistics and I hope that ours is unique and that at least a few kids can say, “I know what that feels like” and see themselves on these pages. ∎
DR. ALLY ZLATAR EDUCATOR, ARTIST, ACTIVIST & FOUNDER OF THE STARVING ARTIST
GOOD’ EXCLUSIVE
Dr. Ally Zlatar is an educator, artist, activist and founder of The Starving Artist, an initiative using creative voices for advocacy and systemic reform. Her doctoral research focused on embodied experiences of well-being through creative arts and her visionary approach to art-based education and its commitment to fostering systemic reform have had a profound and positive impact on individuals worldwide. Ally has received many prestigious awards and is recognized globally for her humanitarian work.
TANITH: Ally you created The Starving Artist, an initiative that empowers people through creative arts and has reached over 20,000 lives, in 2017. What inspired you to create it?
ALLY: Growing up, I suffered from a severe eating disorder for over 10 years. It massively affected my health, leaving me with several chronic illnesses. My traditional Eastern European family didn't understand the depths of mental illness, and medical practitioners saw a diagnosis; they didn't see the person suffering behind the disease. I only was able to find my voice through art, and it helped me connect and promote authentic and vulnerable communication around unwell bodies. From there, it led me to start The Starving Artist.
TANITH: As well as empowering people you believe that art has the power to improve mental well-being, address climate change, and explore migrant identity. Tell us more about that?
ALLY: I firmly believe that art gives voice behind the numbers of those affected globally. By using art this helps create a more inclusive and representative civic reform process. Individuals with lived experiences engage with our art and research on a personal level. This fosters discussion and encourages sharing of their own experiences. Bene ficiaries find safety and comfort in the art, knowing they are not alone. The art communicates their struggles and promotes further discussion. Those outside of the lived-in experiences also gain insight into struggles of loved ones, broadening perspectives and learn more on how to support their loved ones and communities struggling at large. With art's diverse forms it really is a remarkable tool to fosters empathy, understanding, and positive change.
TANITH: In addition to creating The Starving Artist you also have an SA scholarship providing financial assistance for artists receiving in-patient treatment of mental illnesses and supporting artists and individuals. How does it work and what impact have you seen?
ALLY: The 'Starving Artist Fund' is committed to offering financial support for marginalized communities requiring inpatient treatment for eating disorders. Many individuals in these communities encounter obstacles to accessing treatment, including limited healthcare access and financial constraints. The funds generated from our 'Starving Artist' events, exhibitions, and sales are dedicated to assisting these individuals in receiving the necessary care and support for their recovery. We firmly believe that everyone deserves the opportunity to access vital treatment for a healthy life, and for over 3 years this scholarship program is one of the ways we are actively working towards making that aspiration a reality.
TANITH: You are currently working on numerous projects including ‘Voices of Water’ and ‘The Pain of Others’ tell us about these projects and your ambitions for them?
ALLY: The Starving Artist's 'Voices Above Water' is an immersive showcase that aims to bring together works of art that delve into the crucial themes of climate conservation, diversity, and preservation activism. Which features over 30 artists from 20+ countries. These artworks not only illuminate the intricate interplay between climate change and our planet but also emphasize the critical need for its preservation. Similarly 'The Pain of Others' is influenced by Susan Sontag's work, which examines the impacts of trauma and conflict. With this exhibition, we emphasize the significance of art representation and authentic engagement as essential tools for processing the complexities of warfare. We firmly believe, echoing Sontag's insights, that art carries a duty to effectively understand and communicate the pressing need to safeguard our global community. At the work's core, we strive to encourage re flection on the profound impact of very diverse global issues through the potency of global creative voices.
TANITH: You have won numerous awards for the work that you are doing including a Global Youth Award 2024. How important is it to be recognised by awarding bodies for the work that you do?
ALLY: It has really helped reaffirm the validity of the work we do via industry recognition and support. Often art is seen as a pretty painting on a gallery wall but not as a tool for creating tangible change within our communities. While the accolades are very impactful what matters most to us is helping establish The Starving Artist as a key leader in art advocacy to be able to continue the work I do.
TANITH: You are currently teaching Art at the University of Glasgow but what are your ambitions for the future both for Starving Artist and personally?
ALLY: My personal goals are to continue leading The Starving Artist to be a leading organization globally (maybe one day we will be as big as Save The Children) and hopefully expand more outreach and representation of Oceanic and Asian communities in the next few years while tackling key issues like health equity, biodiversity and mental wellbeing. In accordance, I would love to continue arts research and teaching as a maybe Professor of Arts and Social Justice to be able to continue to inspire both in academia and for the global communities directly. ∎
Follow Ally on Instagram: @allyzlatar
Visit The Starving Artist online: starvingartist.cargo.site
TANITH HARDING
Director of International Development, The Legacy Project, RoundTable Global www.awarenessties.us/tanith-harding
Tanith is leading change management through commitment to the RoundTable Global Three Global Goals of: Educational Reform, Environmental Rejuvenation & Empowerment for All. She delivers innovative and transformational leadership and development programmes in over 30 different countries and is also lead on the international development of philanthropic programmes and projects. This includes working with a growing team of extraordinary Global Change Ambassadors and putting together the Global Youth Awards which celebrate the amazing things our young people are doing to change the world.
JOY MUELLER BLANCHARD
JOYOLOGIST
‘PEQ
“My desire is to teach people about creating a sense of wonder. Protecting wonder, for Joy, is to unveil joyfulness.” - Joy Mueller Blanchard
As an artist, Joy Mueller Blanchard describes vivid as “Everything Alive.” She describes it as a painting, which is always a collaborative effort creating not just a medium of expression, but instead, a way of life. Art has always been a lifeline that sustains and nurtures Joy’s spirit.
With an insatiable curiosity and a deep reverence for the natural and spiritual world, Joy dips her toes into every medium imaginable, from paint and plaster to botanicals and fabrics. Her hands-on approach to creativity fuels her daily life, infusing each moment with a sense of wonder and possibility. She is heavily drawn to weave in the past that includes everything from repurposing vintage art to preserved flora and fauna. “I hang onto tiny twigs because I like the shadows they make, or because I see them as four legs for a creature I envision,” Joy shares.
Saving all the grapevines cut from her vineyard, one year turned into a public art installation at Peter Strauss Ranch named OUR LADY OF THE ROOTS. The installation’s tree bark, bee comb and grasses was also featured for the National Park Service Art in the Park Program. The sculpture burnt down in the Woolsey fire but not before her joy was experienced and photographed by visiting school children, concert goers and neighbors. Joy then made a mini replica of the sculpture which traveled with her to South Africa. When asked why, Joy replied, “To share the joy that Our Lady is everywhere.”
Joy describes herself as a Joyologist. She coined the phrase because she knew that she wasn’t just an artist. Her art was a channel to an experience, a joyful experience. Through her artistry is her self-expression that shows and shares her life, as she defines, “living a creative and authentic lifestyle.“
Joy's innate drive to push artistic boundaries stems from her ability to uncover beauty in all facets of life, emphasizing the profound power of connection through her art. She articulates, "The deeper we acknowledge our spiritual connections—to nature, to one another, and to a higher power—the more profound our joy becomes." This sentiment is exemplified in her journey to Catholicism over two decades ago, a transformation that intensi fied her relationship with Christ and prompted her to pursue a deeper commitment by becoming a life professed Third Order Dominican, also referred to as a being a Lay Dominican. For Joy, this commitment is foundational, serving as a cornerstone in her life, built upon the pillars of prayer, study, community, and service, which not only deepen her faith but also provide a rich communion with tradition and creativity.
Responding to a call for deeper unity through prayer within her chapter and community, Joy constructed a private chapel in her garden. "Creating sacred space is important to everyone and most can do this internally, but my first inclination is to build it—I’m a maker; I connect much more easily with what I can see and touch." Inside the tiny handpainted chapel walls, amid relics and statues, she dedicates a sandbox to an artistic form she learned from another creative: Morning Altars, merging her spiritual devotion with her creative expression. Studying with Day Schildkret, Joy discovered his wonderful tool and creative practice that nourishes spirit through nature, art, and ritual. Combining art forms intuitively, she constantly seeks ways to embark on a profound journey of self-expression, nurturing her artistic spirit at the heart of her home.
JOY MUELLER BLANCHARD JOYOLOGIST
Written
and Narrated by
Sonja Montiel and Joy Mueller Blanchard
In the quiet moments of reflection, Joy finds solace in the words of a 14th century poet, Hafiz…
I sometimes forget
That I was created for Joy. My mind is too busy. My Heart is too heavy
For me to remember
That I have been called to dance
The Sacred dance of life. I was created to smile To Love
To be lifted up And to lift others up.
O’ Sacred One
Untangle my feet
From all that ensnares. Free my soul. That we might Dance
And that our dancing
Might be contagious.
Follow Joy on Instagram: @thejoyfulartist
Learn more online: www.JoyfulArtistHome.com www.madetvnetwork.com/?via=joy www.morningaltars.com
SONJA MONTIEL
Co-Founder of PEQ Performance Consulting www.awarenessties.us/sonja-montiel
SONJA MONTIEL (MA Education) is a cofounder of PEQ Performance Consulting LLC and cohost of “The DH Effect” podcast. She and her partner, Hilary Bilbrey, guide individuals, families, and teams to consistently reach successful outcomes through positive and emotional intelligence strategies. During Sonja’s 23 years working with thousands of teens and young adults worldwide, she began to witness many societies creating an unhealthy hyper-achieving culture that misguides our young people in their pursuit of living a life of fulfillment. Sonja is changing that narrative highlighting educators around the world who dare to think differently about education. (www.peq-performance.com)
www.IamAwareNow.com
DR. PATRICIA WRIGHT EXECUTIVE DIRECTOR OF PROOF POSITIVE
Dr. Patricia Wright has dedicated her career to ensuring individuals with autism have access to effective services and supports that lead to more joyful, meaningful lives. Passionate about education and advocacy, she’s worked tirelessly to make the world a more inclusive place for autistic individuals and the communities that support them. Through her current role as Executive Director at Proof Positive, her bold vision is being realized.
ALLIÉ: Can you share a pivotal moment or experience that motivated you to dedicate your career to advocating for individuals with autism?
PATRICIA: I met my first autistic person when I was 16. Shari was 8. I became a respite provider for her and her family. We had so much fun together - swimming, going to playgrounds and we both loved food. One time when we were at a restaurant, Shari got really upset. She clearly wanted something. Shari didn’t have spoken language. She was doing everything she could to get her needs met, walking towards the counter, vocalizing, even throwing herself on the ground in frustration - she really had something to say, but I just couldn't figure out what she was trying to tell
Exclusive Interview with Dr. Patricia Wright https://awarenow.us/podcast/shaping-inclusion
ALLIÉ: Given your background in designing systems of support for children with autism, what do you see as the most critical components for ensuring that such systems effectively meet the diverse needs of autistic individuals and their families?
PATRICIA: I’ve had the privilege of working across age spans, geographic regions, and cultures and being invited to learn from and support so many autistic individuals throughout the years. In some regions we still have access issues; that is the first goal to ensure that every individual has access to effective services and supports. As we address access issues, the services must be personalized and customized to meet the unique needs of each individual. Customization is hard when working on a systems level, so the system must be driven by categories such as self-determination and co-designing of the supports with the individuals receiving the support. The system must be designed to meet the needs of autistic people.
ALLIÉ: As a global leader in autism advocacy and programming, what do you believe are the most pressing challenges facing the autism community today, and how can these challenges be overcome?
PATRICIA: At the top of the list, I would say, is the marginalization of disabled people in our culture. Autism must be valued as part of our society. As Maya Angelou states, “In diversity, there is beauty, and there is strength.” Understanding that diversity is part of our human fabric strengthens us. On a more pragmatic level, I would also like to advocate for additional resources. Too many families are without respite services, too many autistic adults cannot access employment because the HR professionals in companies have not received proper diversity training, and too many autistic teens are lonely as there are not enough social support systems. We know how to solve these problems, we simply must implement these solutions in a manner that affords universal access.
On a very practical level, I am committed to ensuring every autistic individual and every provider has access to wellbeing practices. Prioritizing wellbeing through simple practices like gratitude, inducing positive emotions, and learning and leveraging everyone’s character strengths will immediately move the needle forward. Small wellbeing actions today can change the world of tomorrow. ∎
PERSONAL STORY BY JAY ANDREWS
As professionals, we often chase that elusive dream job – the one that ignites our passion, fills us with pride, and leaves us feeling confident in our abilities. For me, that feeling has always been on the soccer/football pitch. From the age of 6, through competitive school games, and even into semi-pro leagues, the lessons learned on that field have been invaluable.
On the pitch, every player has a role to play – whether it's scoring goals or making crucial tackles. It's about building a championship team through hard work, dedication, and unwavering support for one another. And isn't that what work is all about too?
In the workplace, just like on the field, we face highs and lows, moments of adversity, and the need to stay in tune with our colleagues and ourselves. It's about creating a collaborative environment, having each other's backs, and putting in the quality time to produce exceptional results – be it a winning presentation or a groundbreaking project.
But amidst the hustle and bustle of work life, how do we find that same feeling of clarity and focus that we experience on the pitch? It's different for everyone. For me, it's about the feel of grass underfoot, the calmness of the field, and the belief that we're working towards something bigger than ourselves.
Just as I find solace in dribbling a ball between my feet or curling a shot into the top corner of the net, I strive to bring that same focus and determination to my work. It's about setting goals that are bigger than the organization, aligning with values and beliefs, and working together as a team to achieve them.
So, whether you find your passion on the pitch, in the boardroom, or somewhere in between, remember to embrace it wholeheartedly. Because when you're doing what you love, the possibilities are endless, and success is inevitable. ∎
DEBORAH WEED AUTHOR & SPEAKER
PERSONAL STORY BY DEBORAH WEED
At 16-years-old, Amanda had a bald head, a frail tiny bird-like body, dim eyes and a beatific spirit. Brain cancer had stripped away her youth. Yet, love gave Amanda superpowers that defy gravity. I was about to peer into her world and other children like her, behind the protective lens of a camera.
I came up with the idea of Faces of Love from my own harrowing health journey. There were so many questions that flooded my being. How do families see their ailing children: as a blessing or as a burden? If a child could choose one photograph to tell their story, what would it be? What could a camera capture that the naked eyes can’t see?
In truth, this would be a journey of self discovery. I would take two things, then merge them together. The first was to take a hobby that I absolutely adored, photography and couple it with my seeking mind. These were the days way before digital photography. The idea was for me and my husband, David, to take children out for the entire day, let them use their imagination to come up with a theme, then let life in the raw create magic.
Amanda was up first. When I asked her what she would like to capture in a forever moment, she told me that her mom was her angel. Amanda envisioned a photo that would show the love between them. This precious girl’s request took my breath away.
We spent the day taking pictures of golden scarfs entwining the hearts of daughter and mother. Underneath a magnificent tree with Amanda holding a pastel bouquet, as flowers from the tree dotted the green grass. Capturing her face stripped of color, yet with the resonance of the universe.
Her Mom told us stories of how brave Amanda was. How her brother would literally carry her on his back so that she could attend school. All the reasons that her challenge galvanized the family into the purest essence of love. Amanda kept on reiterating all the blessings in her life. It was like we were given the key into a world that has all the earmarks of tragedy, yet elevates the whole into a higher vibration. Unbelievable.
When the photos came back from the lab, David and I were blown away. There were orbs of colors, rainbows and other light streams that seemed to come out of the ethers. They were strategically placed at heart and head chakras. Or, as auras that are usually hidden from sight. It was very clear at that point that I was not the one taking the photos. I was simply the one pushing the buttons.
On the day that we presented the photos to Amanda and her family, you would think that we had just given them a million dollars.
“I forgot how beautiful my daughter was,” whispered her mom, as tears leaked from her eyes.
“Mom, look, you really are my angel,” shouted Amanda with a renewed life force, as she studied one of the pictures in which the scarfs seemed to morph into angel wings.
This story keeps on getting better! Many years later, we heard that Amanda went on to take photos of other children who had brain cancer. We never saw the photos. Nor, did we need to.
Somehow, we knew that the images that are transcribed on a heart can literally change the trajectory of a life journey. Even though a child’s vessel can be strained, there is profound beauty in every soul — just waiting to be unleashed.
Every child who we had the honor of taking pictures of had stories that will be tucked away in our souls.
There was the little hispanic girl with brain cancer who was told that she could never play the cello again. Yet, we took photos of her playing the cello in her bedroom, with the light streaming in from the curtains. Her grandparents and parents cried with joy, realizing that their little girl was not broken. The music still lived in her.
Podcast
Written and Narrated by Deborah Weed https://awarenow.us/podcast/faces-of-love
“At times, we were born to carry our brother and sister on our backs.”
There was the teenage black girl with lymphoma who loved peanut butter and jelly sandwiches. David and I made hundreds of sandwiches that became the frame from which her expectant face peeked out. Her family was able to have a moment of laughter, seeing their daughter as a kid with joy being expressed.
Then, there was the tiny little girl of one-year-old, who we were told was not going to make it. Her picture was the biggest surprise of all. In most of the pictures, there were those magical lights that seemed to paint the photos with wonder. There was one of these on the girl’s forehead. A week later we heard from the mom. She was practically in hysterics.
“Did you see? Did you see?!” she exclaimed.
“See what?” I asked.
“It’s the Mother Mary! It’s her. I know it’s her!”
Even though I couldn’t see the mom, I could feel faith being restored, like air going into an inflated balloon. Sure enough, when you turned the photo upside down, the light image looked exactly like Mother Mary. Although we never heard from her again, my wish is that the photo made her feel as though she was being embraced by Mother Mary.
Through this endeavor, born of curiosity, creativity and expression, I got my answers. Truly, the eyes can only see so much. Beyond that, is a vivid world where love elevates the whole. Illness is NOT a BURDEN. It is an opportunity to use senses that would otherwise be dormant. We are not islands. At times, we were born to carry our brother and sister on our backs. Because in the end, when our masks are forced into oblivion, what remains is truth — we are ONE. ∎
PERSONAL STORY BY DENA KUEHL
At Corewell Health and Priority Health my colleagues know me best as a Quality Audit Specialist; PH Culture & Diversity Council Member; Adaptabilities BRG Commerce Lead; PriorityFirst Change Ambassador(CA); Corewell Health Inclusion Ambassador; and Team DEI Representative. Outside of my organization I am a mother, daughter, sister, aunt, niece, friend, advocate, coach, ally, cancer survivor, and volunteer.
I was gifted with two neurodivergent children. My daughter is my Champion, and my son is my Hero who are now adults. I’m the Guardian for my son. He is developmentally disabled and was diagnosed with Autism Spectrum Disorder (ASD) with an added spice of Tourette’s Disorder who also is visually impaired.
Our story began at Corewell Health in June of 1998. At six-months gestation, I learned my son had cysts on the frontal lobes of his brain and was told to expect a child with special needs. Seeing medical specialists for him before his birth was a surreal experience, but it prepared me for the road ahead. At each step, I was handed a new professional who guided me forward cementing the next brick in the road of our healthcare journey.
My son did not walk till he was 2 years old, was non-verbal till age 7, his eyes did not follow a person in conversation, and did not read until age 10. This was before Autism was a mainstream word. At this time, ASD came with no play book navigating the next step to take. Together, we stepped forward into the unknown. To teach my son to walk, I placed his feet over mine to learn to pick up his feet to take his next step. To communicate with him, I used our local public library and the Deaf and Hard of Hearing Services for resources to learn sign language. For his eyes to track and focus when in conversation, I created glasses with “blinders” on each side and above, so his only choice was to look directly at the person who was speaking to him. This was pivotal so he could effectively engage with his speech, occupational, physical, and ABA therapists. I homeschooled my son till he began his high school career. I specifically chose Bloomingdale Public High School and moved to this Michigan Blue Ribbon educational system where he had a 3 to 1 teacher ratio throughout each day. He graduated in 2017 with a supporting class of 67 students where he achieved his Certificate of Completion.
After High School he attended the Allegan Area ESA in Otsego for 2 years then the KSID CTC till 2021. In 2021 he made the decision to end his formal education to begin his pursuit to find employment. Again, there was no play book or “prescription” for the next step in our path. He volunteered in Hudsonville, MI at Love Thy Neighbor to gain employment skills. From there, he volunteered at Beer City Dog Biscuits as a Brew Baker. Then, with the job coordinating services provided by Beyond26 he became a pioneer at Comprenew as a Recycling Technician in their AWARE. This program model specifically employs adults with ASD.
AwareNow Podcast
Written and Narrated by Dena
Kuehl
https://awarenow.us/podcast/our-voices-carry
Together, our voices carry to speak up, out, and be heard. To use my voice for others who are not able to speak for themselves. My goal is for ALL to have equal opportunity to be contributing members of society and live a quality life. I’m able to bring my whole self to work and own my voice. This permits me to collaborate with compassion to have the courage to bring clarity with curiosity.
Our family motto is, “If you give me your best, I will always give you mine.” Dena Kuehl 2012. I’m able to LIVE this at work and home. ∎
Mental illness is not a crime, but our laws dictate otherwise.
‘BEYOND STIGMA’ EXCLUSIVE COLUMN BY NATIONAL SHATTERING SILENCE COALITION
Unjust laws continue to send our sick children to prison. And my son, Nick, wasn’t always sick. Nick had always been a loving and respectful boy. He was handsome and charismatic, a high school athlete excelling in track, gymnastics, wrestling, lacrosse, football and boxing. During Nick’s senior year of high school, he experienced his first psychotic break and was hospitalized for a month. Terrified, we had no idea of his whereabouts from April - July 2022.
In July, Nick sat down with us to explain what happened. With a monotone voice he recounted his delusional thoughts as if they were completely normal. We tried getting him help at the hospital but were turned away. That August, Nick returned home one day after losing a stonemason job that he held for one month. He had thrown away all his possessions and believed he could control others with his eyes. Ultimately, Nick was involuntarily transferred to the hospital again and released after a month with an of ficial diagnosis of bipolar-1 with psychotic features. He was sent home with antipsychotic medication that he refused to take.
In early November, Nick’s dad was chopping vegetables when Nick grabbed the butcher knife, went face-to-face, and asked him three times in a row, “Do you want to die?” He was involuntarily held for the third time in less than a year, where they later took him to court for a civil commitment order. It was granted. The judge found that Nick was not competent, was not able to make informed decisions for himself, and that failure to keep him in the hospital would create a likelihood of serious harm. A judge ordered Nick to be treated with an antipsychotic medication despite his reluctance to accept treatment. Nick suffers from anosognosia, a lack of insight into his illness, and therefore is unable to rationalize the need for treatment.
The hospital found Nick to be uncooperative and unwilling to actively participate in treatment. Though injectables were an option, they were not administered because Nick voiced a preference to take oral medications. But it’s often difficult to determine if the pills were actually taken. Despite having a court order in which the hospital could force medications and keep Nick for up to six months, he was released to a homeless shelter after five weeks.
Nick was eventually kicked out of the homeless shelter for his behaviors. We were afraid to let him come home. He had no place to go. Like so many, Nick was forced out on the streets. His illness prevented him from being able to think logically and follow through with normal daily functions. It was impossible for him to follow up with the one and only aftercare appointment. Nick was set up for failure, allowed to remain psychotic, cold and unsheltered on the streets of Massachusetts, putting himself and others in danger.
In December 2023, Nick was allowed to come home to spend a night with his father. His dad had received a call to come pick him up from a spiritual retreat that Nick was attending. The person who called said that Nick was acting strangely and could not stay. Nick hadn’t eaten or slept for days, was talking to himself, and reported seeing and hearing the devil, waking others up telling them he was concerned for all humanity. We also learned that he had thrown away all his belongings, including a sleeping bag.
NICK’S MOTHER & NSSC MEMBER
“How can one be an active and effective participant in their own defense if they don’t understand what is real and not real?”
At home Nick was paranoid and kept asking his Dad not to point his fingers at him though he was not. Nick was too afraid to sleep alone on the couch, so his father dragged a mattress to the floor to sleep nearby. Nick made him nervous by his intensity and when he came close to him, he asked Nick for more personal space, at which point Nick elbowed his father in the eye, almost knocking him unconscious. His Dad struggled to get outside for help, as Nick continued to violently attack his father, continuously punching him, tackling him, head-butting and biting his back, neck and fingers. Neighbors called 911, and waited for police to arrive as they watched helplessly in horror. Police arrived and pepper sprayed Nick, restrained and sedated him, and he was brought to the hospital again.
The doctors who examined Nick requested he be sent to a mental hospital, not prison. Nick was sent to prison until the next day when his attorney requested an evaluation. Nick was then transferred to Bridgewater State Hospital for evaluation, where he stayed seventy-six days.
Nick currently has three open court cases and an arrest warrant in North Carolina. It wasn’t until the last arrest when Nick attacked his father and the family provided past medical history to the attorney, that anyone even considered that these crimes were committed as a result of Nick’s untreated psychotic illness. Nick reported to the attorney currently defending him in the most recent case that he doesn’t have a mental illness and has never received treatment.
The state-funded lawyers delayed the commitment hearing twice, fighting for Nick’s right to choose whether or not he wanted treatment. The medical team at the state hospital had strongly believed that Nick needed treatment and was not competent to make this decision on his own. In January, the judge declared him incompetent.
Almost two months later, Nick appeared “competent” when he went before the judge who would decide whether he’d be committed. For some reason, the attorney for the state hospital withdrew the request for forced medication during that civil commitment hearing and the judge was just ruling on Nick’s competency. The judge's exact words were, “Someone can have delusions and be competent.” Nick was sent to prison that night - criminalized for his brain disease.
Nick sits in his small cell, believing he deserves punishment and to be “taught a lesson.” He believes he should spend time in prison because mental hospitals are too nice. He has declined any treatment when the options are voluntary. When I visit him in jail, my son tells me how everyone had a mental illness in the state hospital but him, and that’s why he didn’t belong there. How can one be an active and effective participant in their own defense if they don’t understand what is real and not real?
JACK MCGUIRE CO-FOUNDER OF AWARENOW MEDIA
FEATURE STORY BY JACK
MCGUIRE
Ever wonder how you can do your part to help out our planet? Well, you’re in luck because I’ve got the top 10 ways you can make a positive impact on the environment, and they’re easier than you might think.
From ditching single-use plastics to hopping on the public transit train, there's something for everyone here. So grab a seat, and let's dive into these simple yet impactful ways to give Mother Earth a hand:
1. Reduce Single-Use Plastics
Use reusable bags, water bottles, and containers to minimize plastic waste.
2. Conserve Water
Fix leaks, take shorter showers, and use water-efficient appliances to reduce water consumption.
3. Save Energy
Turn off lights and electronics when not in use, use energy-efficient appliances, and consider renewable energy sources.
4. Recycle Properly
Sort recyclables correctly and recycle items like paper, glass, plastic, and metal.
5. Compost Organic Waste
Start composting food scraps and yard waste to reduce landfill waste and create nutrient-rich soil.
6. Plant Trees
Trees help absorb carbon dioxide & provide oxygen. Planting trees can offset carbon emissions and improve air quality.
7. Support Sustainable Products
Choose products with eco-friendly certifications, such as ENERGY STAR, USDA Organic, and Fair Trade.
8. Reduce Meat Consumption
Eating less meat or a plant-based diet can reduce greenhouse gas emissions associated with livestock production.
9. Use Public Transportation
Opt for public transit, carpooling, biking, or walking whenever possible to reduce carbon emissions from vehicles.
10. Educate and Advocate
Spread awareness about environmental issues and advocate for sustainable practices in your community.
These simple actions can collectively make a significant difference in protecting our planet for future generations. ∎
Then you pick up the pen And the brush as well. You say, “Why not? What the hell?”
You surrender your schedule And all you had planned. You instead do as life And the moment command.
You trust things happen
As they are designed, Even when seeking answers, With none you can find.
You believe in what You can’t understand,
Trusting it’s all According to plan. It’s a plan that is so much Bigger than you.
Scary as hell, But still you hold true…
Because it’s what You were called to do.
