The 50\50 project
The 50/50 Project Podcast was created in order to create a platform for those with both physical and mental disabilities to tell their stories. To give voice to the wonderful, the painful, the funny, the sad and the unknown that comes with being in the disabled community. "50/50" are the odds provided to my parents of whether I would live or die when I was born. I have spent the rest of my life to make the most of the 50 I was given as a person with a disability I will be telling my story to begin with and interview people in my life and having interviews. My hope is the more I share anyone out there listening will reach out to me and tell me...what is your 50?
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Not Going Anywhere
07/20/2023
Not Going Anywhere
You may be surprised by the answer. Please join me for a new interview that once again answers what's your fifty? This week we are joined by Sarah L. Sarah takes us through her early life as she navigated the world with cerebral palsy and how she overcomes daily challanges as an adult woman with a disability. We also discuss how we became friends and how important it was for both of us to have someone who knew "our world". Sarah is a smart, funny and strong woman. I hope you all enjoy our talk. Please see below for the attached Transcript.
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Black History Month: Lois Curtis
02/04/2023
Black History Month: Lois Curtis
Lois Curtis is a Black disability activist and artist best known for her role as a plaintiff in the Olmstead vs L.C. Supreme Court Case establishing the right of people with disabilities to live independently. On June 22, 1999, the Court ruled that unjustified segregation of people with disabilities violated the Americans with Disabilities Act and that it was, therefore, unconstitutional for Curtis to be forced to remain in an institution when she was capable of living in the community. The Olmstead case, as it is now known, paved the way for thousands of people with disabilities to live in communities. It also required public entities to provide community-based services under certain circumstances. For more information on Lois' story and other advocates for people with disabilities within the black community...Please visit https://www.centerforlearnerequity.org/
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2020 2021?
01/01/2023
2020 2021?
***RE-RELEASE*** It's our last show in 2021! Join in as I discuss everyone's favorite thing..Insurance claims for the new year. Also...I give a preview of what is to come in 2022
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Put the Pedal To The Metal
12/31/2022
Put the Pedal To The Metal
***RE-RELEASE***
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Planted Not Buried
12/24/2022
Planted Not Buried
***RE-RELEASE***While some disabilities are seen many are silent. I am honored to bring you Irene's, Please join me as we discuss her journey with chronic pain, how she made it through some dark roads and is now on a mission to help others deal with their pain and show what means not to be buried by pain but planted in faith.
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Wheels Up Bestest
12/23/2022
Wheels Up Bestest
Travel, fun. Traveling in a wheelchair? Always interesting and makes good stories. Please join me and one of my best friends Amy and I discuss our adventures traveling together. Some of it is funny, some of it embrassing...but also important. Important because not only do we talk about what it is really like to travel as or with someone who has a disabillity, but also talks about how no obstacle should stop you from enjoying your life with the people you enjoy.
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The Unseen
12/23/2022
The Unseen
***RE RELEASE***Join me as we talk to Bonnie. Bonnie's story is excellent story of reselience and determination to continue to strive for your best, whatever that may be. It also serves as a reminder that the are people all over dealing with "Unseen" Disabilites. Bonnie opens up her life with ADHD as will as several others. Bonnie talks about her struggles but ultimately her hope about how her story can help others
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The Stross Chronicles
12/18/2022
The Stross Chronicles
***RE-RELEASE*** I hope you guys truly enjoy my interview with Joy. She is teacher, a performer, a wife and an advocate for her son Stross. When I started this podcast, Joy was one of the first people that came to mind. As a former student of her and her husband Mark, I got to know joy and mark as the navigated their eldest son's journey with mental and physical disabilities. Come along with us as joy sharesv her, her husband Mark and there son Syke as she tells their story of successes, challenges and most importantly... love
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Laughing through the pain
12/17/2022
Laughing through the pain
***RE-RELEASE*** This week the podcast welcomes millitary veteran and comedian Linda Marcus Smith. Please join us as Linda discusses her early life, what led her to join the millitary and how through laughter, it has become her mission to save lives. Please forgive the sound and editing as this was one of the first shows I produced. I promise Linda's story outshines all else
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To the Moon and Back
12/11/2022
To the Moon and Back
*** RE-RELEASE***This week we will be have myself and my best friend on. We will discussing our nearly 30 year friendship. We share stories and how facing our own adversity , me with my disability and Amber being a Native American woman, we have built a lifelong friendship that we hope sends a message.
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Hope Is A Fight
12/10/2022
Hope Is A Fight
***RE-RELEASE*** I am so excited for you to meet Kerry. She was my first interview and she has an inspiring story, Join us a we discuss what is like for your entire life can change in two minutes and how you always fight for hope.
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The Crisis Of Belonging
12/04/2022
The Crisis Of Belonging
***RE-RELEASE*** Hey All! I am really excited to share the first written 50/50 Project...Billie Maudry Spaight along with several other people whose stories you will hear, showed me how I can use this platform for people with hearing loss. What follows is the written essay Billie submitted I hope you enjoy Billie's 50. Truth to Power-23 1-7-22 By Billie Mudry Spaight My Crisis of Belonging… . . .began in my mother’s womb more than 70 years ago when my placenta got detached from the wall of her womb and slid down to block my birth canal. My mom bled, went to the emergency room, and had a cesarean. Both of us nearly lost our lives, but, quite fortunately, survived that ordeal. She was fine. I, however, got damage to my brain as a result of that birth trauma. I had a condition known as choreoathetosis, a type of cerebral palsy. That condition gave me a host of problems, such as hearing loss, speech problems, spasticity especially around my mouth, general bad balance, and more. Add to that one leg slightly shorter than the other resulting in a limp and scoliosis that brought their own problems into the mix. It’s like a medical soap opera and I laugh about it because it’s absurd. I laugh because I refuse to let these things define me. I had to go to school. Ugh. I loved learning whatever I could hear. I was excellent at reading. My developmental disabilities did not challenge my intellect. I had some friends. But, OY, enough of the other kids really made an emotional mess out of me, because I looked different, sounded different, and didn’t belong. I was called a spazz, a freak, dumb, and crazy. Those kids had a field day making fun out of how I talked and what my face looked like. Sometimes the mockery would get so intense that I would just stay home because I couldn’t take it. This followed me from grades 1 through 12 and, to a less-obvious extent, into the rest of my life. Lots of fun, yea. When Trump made fun of a disabled reporter—he gave me a PTSD attack in the bargain bringing back a horrible memory. I danced at my junior high school prom with a gal who had Down’s syndrome. Her brother was a nasty piece of work who mocked me so much that I had to be pulled out of school for a couple of weeks. There are tons of other incidents, but what’s the point of citing a bunch of stories about how schoolkids can be nasty? Now, they call it bullying. Yep, I got beat up by a couple of kids for not hearing something they said to me. Nice kids, eh? I still made it out of school O.K. I didn’t flunk out. I went to college, got my B.A., and eventually ended up in publishing. What’s more, I found the love of my life, J. Paddy Spaight, and we married. He didn’t care about my disabilities. He loved my abilities and just me as a human being. Still married for nearly 40 years and still in love. • • There are ongoing things that occur with certain disabilities. When one is hearing impaired, that is not a visible disability. It’s hard for people to grasp that I can hear some things and not other things. When I make a comment that doesn’t relate to what somebody actually said, it can appear as if I am either dumb or a mental case. People don’t automatically realize that I misheard something. They forget to face me when they talk. They forget that the background noise drowns out what they are saying. When I interrupt them, I am not being rude. All I know is that they stopped talking. I don’t hear the little cue that indicates they have more to say. They have no idea how intensely I am working continuously attempting to grasp what people are saying and understand what is happening all around me. It’s called hypervigilance. They don’t know how hard it is for me to get a word in edgewise, because I don’t know when it is truly O.K. for me to speak and to get it right. Thus, so much of I say is often ignored or dismissed by people. For the longest time, I knew that there was something wrong with me, but I never really faced it—not until my mid-30s when I got harassed on a job for having hearing problems. That’s when I realized what I was dealing with—having a disability. That was what was wrong with me and that was what too many people were reacting to. • • Let me get a little bit political here. Disabilities are not generally on people’s minds. The only time disabilities ever get mentioned by politicians is when they are arguing about health care. Me? I am all-in for single-payor to pay for the myriad prescriptions I and my husband need just to function like normal neurotypical folks. Pete Buttigieg is the only politician who consistently mentions disabled people. He also talks about feeling isolated and alone, like he didn’t belong because of his sexual orientation. The first time I heard that, I was just one big puddle of tears. That sense of isolation, that awful, awkward feeling of something being wrong was what I identified very closely with—because of my disabilities. I could just feel that pain that he was expressing. It hit me right in the gut; it hit me down to my core where I live. I know what it is like to be laughed at, to not be taken seriously, to be pushed out. I know what it is like to feel the pain of other folks who share that experience. I took the struggle I had with my disabilities to develop empathy for other marginalized people. Marching for their causes, voting for their rights, crying for their pain. . .all like it was my own. I didn’t realize this. I figured it was just because of my being a liberal. But the extent that these things affected me was much more than that. It was identification—not identity politics—a sense of having experienced that pain of being on the outside. Pete said: I am interested in tapping into the experience that Chasten and I have as a happy married couple but also as people who know what it’s like to be othered and to hopefully use that as some basis for solidarity. Not only with other members of the LGBT-Q community but anybody who for whatever reason has experienced exclusion or wondered whether they belong. He calls this experience the Crisis of Belonging; I call it my life. That deep experiential empathy is vital to me. It is about the core of my existence. He was talking about exactly what I have done all my life. We both were taking lead (our negative experience) and transmuting it into gold (empathy for others). What beautiful alchemy! There is so much more. Pete’s best friend when he was young was a person with a developmental disability. I have two of those disabilities. Pete got a Deaf sign name from Anderson Pleasants and learned some signing to thank him in a video. Then Pete hired Anderson to do a summer internship in South Bend. I’ve seen a picture of Anderson visiting Pete and Chasten at their home. OMG! • • If you are anything like me, you might feel that having high intelligence is a kind of disability. Let’s face it, highly intelligent folks are kind-of like freaks. People are afraid of us. They tune out what we say because they are embarrassed to admit that they maybe don’t understand what we are talking about. I wish I had the skill to make myself understood, to belong more. I’ve tried to dumb things down, and all that happens is that people think I am stupid. Oops, bad strategy. Maybe people with hearing impairment are not supposed to be smart? You think? • • I had the Holiday Blues recently, a very common phenomenon. I was sad because some people in my family did not get in touch with me on my computer. This is the only way I can communicate. It is my portal into connecting with others besides my husband. I posted about my blues and I was shamed by someone who was going through something worse (she didn’t say what it was). She wanted me to be like Tiny Tim, a good little disabled person, always sweet and taking all the abuse and nastiness the world can offer me. Sorry, no can do. I shared my pain about this expectation with a good friend. He cited how he was abandoned by so-called friends because he found out that he had a condition. There are truly nasty people in this world. It’s not my job to paste a smile on my face and just bear it all. It IS my job to tell the truth about human pain and vulnerability. I am not Tiny Tim. I’m me, with all the complexities and myriad feelings that make up a human being. Being treated wrongly hurts, and it makes me angry; any human being would admit to that. Why should I be different? It’s not all bad. There are many good people who do extend caring and connectivity to those of us who have disabilities. I’m not sour on the whole human race—just that part of it that is insensitive and uncaring. The many who march for cures, who contribute to foundations, and who speak out about disabilities through the arts and other venues are inspirational. There are always the angels who hold doors open for us. I see them all the time. It is my hope that we are moving toward enlightenment so we can be more compassionate and caring toward each other. Let us all enlighten the world about disabilities by speaking Truth to Power. Billie Mudry Spaight is a medical copyeditor. She lives with her husband, writer, J. Paddy Spaight, and their two cats (Corduroy and Gizmo), in Richmond Hill, New York City. Crafting, photography, and computer art are among her favorite pastimes. She likes to study medical things as well as researching the paranormal. The author of a small booklet of very short stories, Paradox: True or False Tales, she is currently writing this series of columns, Truth to Power, on her Facebook page, with the hope of putting them together a book of essays. __________________________________________ This column is written in an attempt to communicate with all of you readers. I hope it will make you think and I also hope that you will enjoy it. If you disagree, tell me why. I could learn something. Maybe you want to add something. Please do. Silence says nothing. Even a simple LIKE shows that you are engaging with this, so any and all KIND FEEDBACK AND/OR CONSTRUCTIVE CRITICISM is very much appreciated. And feel free to share this with your own friends.
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Holly, Abby and Megan
12/03/2022
Holly, Abby and Megan
***RE-RELEASE*** This week, I am joined by Holly, who is a wife, mother, sister, daughter...and has cerebral palsy. Holly along with her two sisters discuss motherhood, being sibilings and navigating life as people in the disabled. I hope you enjoy this conversation between 4 childhood friends as much as we did.
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Mom
11/27/2022
Mom
***RE-RELEASE" This week we welcome my mom Sue to the show to discuss what it is like to be the parent of a child with a disability. Enjoy
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My 50
11/26/2022
My 50
NEW episodes of the 50/50 Project are coming in January of 2023!!! Until then, Please enjoy some RE RELEASE fun with all of our previous episode...beginning with the first one:)
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