The Advocacy Life Podcast & Blog

Tag: disability rights

  • Examples of Ableism

    Examples of Ableism

    As a child with a disability, I attended mainstream classes all my life. One memorable class was DARE (Drug Awareness Resistance Education), aimed at preventing drug addiction—a fear shared by all parents. This program made me realize the importance of early education on critical issues. Just as children learn about the dangers of drugs, they should also be taught about disability etiquette and inclusion from a young age.

    Children’s natural curiosity about differences should be nurtured, not stifled. When a child asks about someone with a disability, parents often shush them out of discomfort. This only perpetuates ignorance. Instead, open discussions can foster understanding and empathy. I recall a time at a mall with my brother Abner and our caregivers. We exited an elevator and overheard a father tell his son, “Thank God you’re not like them.” This comment stung, but more than that, it made me pity the man for his ignorance—a product of likely never having been exposed to individuals with disabilities.

    The disability community is the largest underrepresented and underserved group in the U.S., encompassing every body shape, skin color, sexual orientation, and gender. Despite this, society often ignores us to avoid disrupting their busy lives. Disability is not going away; it’s a natural part of the human experience. Everyone is only “temporarily able” and might need help eventually.

    Living with a disability means no days off; it’s a constant presence. Every day, I face frustrations and struggles. In school, I wasn’t just the last picked for dodgeball—I was excluded entirely because it was deemed “too dangerous.” In home economics, while others learned to sew, I was switched to a different elective because the teacher assumed I couldn’t use the sewing machine pedal. I was never given a chance to adapt or prove my abilities.

    Ableism limits growth for societal convenience, imposing barriers that exclude rather than include. Consider the story of Judy Heumann and the 504 sit-in—a pivotal moment in American history that highlights the fight for disability rights. Stories like hers should be part of our collective knowledge, teaching us about resilience and the importance of inclusivity.

    Exposure to disability issues from a young age can normalize differences and reduce stigma. Integrating disability awareness into education can help children grow into empathetic, informed adults. The more we see and understand people with disabilities, the less “other” they become.

    Our society must recognize that disability is part of the human condition and that inclusivity benefits everyone. By breaking down barriers and challenging ableist attitudes, we create a world where everyone has the opportunity to thrive. We must move beyond fear and ignorance to embrace a future where all individuals are valued for their unique contributions.

  • My super Suit

    My super Suit

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  • Remembeing Baby Doll

    Remembeing Baby Doll

    For the majority of my 20s, I wasn’t partying or drinking on the weekends. I was attending a series of habilitation day programs. I know most people don’t know what that is; don’t worry, I didn’t know what it was either until I got there. The easiest way to describe it is as an adult daycare for individuals with disabilities. This blog is not about me, but the impact “Baby Doll” had on me and those around her.

    Every so often, we come across someone whose life story is so hard to believe that part of it becomes a legend. Baby Doll was a strong African American woman. She was petite, but her heart was three times bigger than she was. Unlike most people, she was not afraid of letting the world see her heart. If she knew you, she would love you! She did not care what your skin color was. Gay or straight, that had no consequence. Every day, she hugged anyone. Oh, how I miss those hugs.

    This story needs to be shared because there’s a large sector of the disability community that has been neglected and has become less human. This makes me feel so angry. I chose the alias “Baby Doll” because that is what she called all of us who attended the day program. We knew who she was talking to just by the way she said the words “Baby Doll.”

    Those of us who can help others must fulfill that responsibility. Baby Doll was born completely “normal,” a pure product of her environment. Her own family forced her into prostitution and drug use. This did not take place in Russia or some third-world country—right here, in the land of hot dogs and the New York Yankees!

    She was eventually burned alive by the waste. After her brain was fried and her body was all used up, she was given over to the state of being an adult. When you’re given a court-appointed guardian, you can’t even get a library card in your name.When I met her, she was a shell of her physical self. Her wonderful smile had no teeth. She seldom wore short sleeves, even in the summer. Baby Doll had gray, thinning hair. She used a small collection of wigs. The nicest one she had, she wore to her funeral. 

    The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.” Zephaniah 3:17

    Yet there are a few aspects of disability life of which people should be aware. Do you know what people with disabilities have in common with prisons and communal settings? The government pays for all essential parts of life. The participants are paid less than the minimum wage. Most importantly, the individuals are denied some critical freedoms. Let me be clear. We do need more medical and behavioral facilities for those with severe needs. We are past the crisis point where we need quality caregivers who deserve a decent wage. The system is so focused on protecting itself. It denies flexibility to the human element.

  • SABE, Books, & More

    SABE, Books, & More

    For the first episode of March, Kevin is proud to present this laid-back episode where he simply updates you on the fun times he had in the last few months. This is a different kind of podcast from your favorite little podcaster.

    SHOW NOTES

    New Jersey Council on Developmental Disabilities

    SABE

    MOX

    A Promised Land 

  • Disability and the American Dream

    Disability and the American Dream

    Whether we like it or not, 2024 is a presidential election year. Now that we are most likely faced with a rematch, Americans will have to make a choice. It’s fair to say that President Biden has had his share of critics. His first term is not even over, but I don’t think many historians are going to put him in their top five of the best US presidents. I know I’m a few months early, but as a disability advocate, I have a different perspective. There are issues that matter to me that most people don’t think about. Most people don’t recognize disabilities until they’re affected by them. We finally have a president who has seen this underrepresented community.

    “provide for the common defence, promote the general Welfare, and secure the Blessings of liberty.”

    free and both of the US Constitution

    Biden became the first president to improve the lives of people and families with disabilities when he vowed to support Home and Community Based Services (HCBS), which includes long-term services and supports. (LTSS) People with disabilities should live in their communities in the least restrictive environment. For some people with disabilities, they are locked away and forgotten. We must serve and protect those who are most vulnerable. Some may want us dead. We all have the same right to live.

    ‭‭Exodus‬ ‭14:14‬ ‭NIV‬‬ [14] The Lord will fight for you; you need only to be still.”

    I am a capitalist. It is maddening to me that just because I was born with a disability, I am forced into a system of poverty. There is nothing wrong with being broke. What is wrong is that I, as an American, don’t have a chance to change that. The social security asset limit set in the mid-1980s has not changed. Under this administration, there has been serious discussion about raising it. I cannot have more than $2,000 in a bank account, so someone else can pay for my $50,000 wheelchair. How does that make sense? I want to live my American Dream, not exist off of the backs of others. There is nothing like going home knowing you earned that money.

    Emily Voorde probably won’t be studied in history books like Kamala Harris. Voorde was the associate director of public engagement for just under 500 days. For the first time in my life, I saw someone who looked like me in a real position of power. She was not there just to be a token, but to actually make change.

    Most Americans don’t realize that we still don’t have marriage equality in this country. There is still a marriage penalty for those with disabilities. This president may stumble with his words from time to time, but I’m confident he would support eliminating this obscene restriction so people can love regardless of their abilities.

    I certainly don’t agree with all of the Biden administration’s policies. He still has more proof. The work is still not done. However, he is the first president to give me, as a disabled American, hope for my American Dream.

    Movements of Brightness Newsletter

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    Cinematic Civil War

  • Hope for Disabled Travelers

    Hope for Disabled Travelers

    @theadvocacylifepodcastat

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    Greetings readers, Now that summer is over and everyone is back from their vacations, I thought it’d be a good time to advocate for some systemic change. Traveling with a disability is an absolute nightmare. Despite what Hollywood movies might have you think, the bathroom on the plane is not large enough to fit two people or even one person using a wheelchair. After I use the restroom at the airport, I am the first person to board the plane. I am removed from my wheelchair and placed on the aisle seat. This is a device resembling Hannibal Lecter’s transportation flight. You can see a full description of this device in the YouTube video. Then I am placed in a regular airplane seat. 

    “lest you lose your honor to others and your dignity to one who is cruel,” Proverbs 5:9 NIV

    I do not move for the duration of the flight. Finally, I am the very last person to get off the plane. I can guarantee you that it is not comfortable at all. By the time everyone gathers their belongings and gets off the plane, another thirty-five to forty-five minutes have gone by. I do not go on long-distance flights What if I have to use the bathroom? I’d have to expose myself in front of the entire airplane. What would I do if I were a female?

    A person with a disability may find it difficult to navigate an airport and board an airplane, especially if they use a wheelchair. Transfers are often difficult because traditional airplane seats are not always accommodating. These passengers’ difficulties are further exacerbated by the cramped quarters and difficult-to-access restrooms onboard.

    Delta’s Air4All prototype takes a giant leap toward enhancing airplane accessibility. With the idea of removable seats, spaces for wheelchair users would take the place of traditional rows. Allowing individuals to remain in their wheelchairs not only ensures their comfort but also promotes their Self-determination. This innovation celebrates the independence of passengers with disabilities. This ground-breaking design lets wheelchair users remain in their own chairs, maintaining their comfort and dignity. Boarding and deplaning would be streamlined and much more user-friendly for the individual. This is still in the early phases, so advocates need to speak up now!

    Delta’s Air4All is a beacon of hope for accessible air travel. By introducing removable airplane seats to accommodate wheelchairs, Delta is transforming the flying experience for individuals with disabilities and encouraging other airlines to follow suit. As we soar toward a more inclusive future, let’s unite to ensure that everyone, regardless of their physical abilities, can experience the joy of taking flight.Thank you for reading, and I hope to see you guys next week. You can find the sources below.

    Sources:

    https://www.travelandleisure.com/delta-wheelchair-prototype-air4all-7509744

    Disability Limbo Newsletter

    I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters

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  • A Message for Young Advocates

    A Message for Young Advocates

    @theadvocacylifepodcastat

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    Salutations to my dear friends. I hope you guys are all enjoying the early days of spring. Every once in a while, we all need a pick-me-up. I decided to write one for my fellow individuals who may be having a hard time right now. Please read or share this with any individuals with a disability of any kind who are going through a difficult time. I, the writer, have a disability, so I hope my words can provide additional comfort. What I’m going to do to make this writing a little more digestible, is list ten brief statements for you to ponder over. Please note the order does not indicate importance; it’s just the way it came out of me.

    I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalms 139:14 NIV
    • Just because there is something medically wrong with you does not mean there’s anything wrong with you. Scientifically one in four people are diagnosed with some form of developmental disability. It is universally understood that no human is perfect, therefore there has to be something wrong with everyone.
    • Don’t let your bad days distract you from remembering the good days.
    • You are under no obligation to accept someone’s evaluation of you.
    • Everyone always fights for what they want, don’t let them make you feel less than for doing the same.
    • Your disability cannot stop you from having a life, only you can do that. Learn the difference between existing in living.
    • if you want people to see you as a person, you must do it before the public does.
    • Your disability does not give you an excuse to treat others any less than you want to be treated.
    • Learn to rest and exercise both your mind and your body.
    • We are never abandoned without a gift. Once you learn what yours is, do not be afraid to use it.
    • Find a small circle of friends, not a large number of acquaintances.

    I pray this small blog finds someone who needs uplifting and encouragement. Remember, you are not given anything you cannot handle. Thank you for reading, and I hope to see you soon.

    Disability Limbo Newsletter

    I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters

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  • Get Naked

    Get Naked

    @theadvocacylifepodcastat

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    Disability Limbo Newsletter

    I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters

    Subscribe
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    Thank you for your response. ✨

    Note: The following book post is an excerpt from my book Confessions From Disability Limbo only on Amazon and Audible. it is a very crude example of disability life.

    Ladies and gentlemen, I have a problem. I know someone will find it controversial. I am fearfully waiting for an email from some legislative officer in the governor’s office, removing me from all the committees I serve on. Besides, I know my mother, little sister, cousins, and 80-year-old grandmother are all going to make a line to beat me after reading this. I beg the Indulgence of all of you. This is advocacy in its purest form. Are you comfortable naked?

    That is why a man leaves his father and mother and is united to his wife, and they become one flesh.
Genesis 2:24 NIV

    Two years ago, I was on a respite with my twin brother. They undressed me on the bed. When my brother said that, he had to use the bathroom most urgently. Our staff quickly went to go handle his needs, and they left me like Adam in Paradise before he discovered fig leaves! I rolled over and grabbed my phone and began listening to music. A few minutes later my staff finds me in my little world drumming along to the epic drum solo in the song I Can Feel It calling in the air tonight by Phil Collins.

    I have often said that I’m uncomfortable with my body, but I have become comfortable being naked around strangers. I am a 35-year-old male wing roughly 135 lbs. Exactly 5 feet tall with hair everywhere on my body except my head, with a collection of scars from past surgeries. I will not be on the cover of GQ magazine soon. The staff that saw me in this vulnerable status had met me less than 24 hours earlier.

    There is this trend on the platform Tik Tok where people walk in front of their significant others in the nude facing the camera outward to capture the reaction. Every time I saw one of these videos I had the same thought “this does not represent my life and those in the disability community.” Imagine having a conversation about sports or if they liked the Chinese food last night as you go over the proper procedure for them to clean your backside. Some people might find this awkward or even laughable I am still one of the lucky ones because being naked often leads to torture for some individuals. For many years, receiving a cold shower was a form of behavioral control for those who lived in institutions. Individuals or the very staff that were supposed to protect them violated some daily. This still happens today. How would you communicate that the water was too hot if you couldn’t speak? This also happens every day.

    I have a challenge for every person who reads this post. Tell or ask someone you love something personal about you when you are nude. Then make yourself have a conversation This simple exercise would hopefully give you a glimpse of what it is like to feel like those of us with disabilities. Even when you are getting a break because most of the time, the people that see us in this vulnerable state we don’t love.

    Here are the rules:

    You can’t do it after sex when everything is perfect.

    You can’t do it to get their attention, you know this is not about sex.

    You can’t cheat and say, ” is this a mole on my back?” It’s got to be something real.

    The most important conversations I have ever had have been in this moment.

    All I ever wanted to do is share my experiences with the rest of the world to show that people with disabilities are people first. Something that society forgets about from time to time: thank you to anyone brave enough to try this. Have a great day, friends.

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  • Who is Bill Byrne?

    Who is Bill Byrne?

    Quick question to all my readers, Do you know the name of your town mayor?  I’ve lived in the southern part of New Jersey for almost 15 years now and I have no idea who he or she is. I’ve been advocating for my disability community officially since September 2016. I just move on to the next meeting trying to speak for those who cannot speak for themselves. Advocates and disability allies never acknowledge the work we do. We just keep going. There is an international disability community, we all work together to ensure dignity and respect for all regardless of circumstance. The New Jersey Council on Developmental Disabilities (NJCDD) hosted their Community Building Awards An event that is held every few years to honor leaders in the disability population.

    Earlier this week I was left speechless When I met a real-life disability hero, Mr. Bill Byrne. I’m ashamed to say this but I did not grow up training or believing in disability rights. I had a very laid-back approach and let my parents do everything. I didn’t begin to discover my voice until well after I was 18. people like Mr. Byrne were rockstars to me. Everyone knows of Madonna and The Beatles for example. At least in New Jersey and in some national circles, That’s how people describe Bill to me. Here are some of his accolades:

    1. He is friends with Mayor Dorothy of Morristown, NJ. He regularly attends town council meetings.
    2. One of the biggest advocacy organizations used to be known as the Association for Retarded Citizens. Thanks to Mr. Byrne and his colleagues There now known as just The Arc.  
    3. He petitioned the New Jersey government to have the words idiot, insane, and retard removed from the state constitution In the early 2000s. 
    4. He sits on many state, local, and national boards.
    5. A proclamation was passed in his township that declared August 16th as Bill Byrne’s Day.

    Yes, I knew he was receiving the Colleen Frazier award for Self Advocacy from the NJCDD weeks before the event. I am the vice chair of the NJCDD to be transparent. (They’re not sponsoring this article or any work that I post on this website.)  It never occurred to me that I would see him there or sit at the same table as he did. I didn’t realize it until he came to shake my hand. This gentleman who had been raising awareness for disability issues since before I had braces talked to me like  I was the next-door neighbor that he had known for years. So often I get frustrated because my work is not good enough for my perfectionist standards. I know we can all relate to that. We are so focused on tangible results, that we forget about the personal touch. Bill has mastered the personal touch.

    “If I must boast, I will boast of the things that show my weakness. The God and Father of the Lord Jesus, who is to be praised forever, knows that I am not lying.”2 Corinthians 11:30‭-‬31 NIV

    This man who cannot read or write and I’m sure has been put down by others, was so humble and passionate. The first words he spoke when he got up to the podium were to praise and Thank God. As a new Christian, this was the first time I completely understood the mission! All his work meant nothing to him without God. Mr.  Byrne from one disability advocate to another, I thank you for showing me the way. You reminded me of what matters. I pray these words can help someone else. Thank you for reading I will see you next week.

    Sources:

    https://patch.com/new-jersey/morristown/bill-byrne-gets-his-day-in-the-sun

    Bill Byrne, champion of the ‘differently abled,’ to be honored by Morristown mayor and council
  • An Interabled Love Story Part 2

    An Interabled Love Story Part 2

    Welcome back, friends. as promised I am presenting my second interview with Charlie and Margaret. A fabulous interabled couple. Since the last interview in 2020, they’re now engaged and more in love than ever. You can find more about the story on their blog and other social media accounts at Just an Interabled Thing. I gave them each a set of questions their answers have never been altered. They deal with society’s judgments on a daily basis they handle them with grace and kindness. They are an example to everyone that love is real. Regardless of circumstance. I am so thankful they gave me this opportunity to be part of their lives. Hope everyone enjoys it and I will see you next week.

    Questions for Margaret:

    1. Your fiance is not independently wealthy and cannot do basic household chores like taking out the garbage, how does he provide for you?

        “There are different definitions of providing, I would argue that providing emotional support and things like that is harder than providing financially or physically, you know what I mean? Charlie is amazing with emotional support. Our current living situation is living rent-free with my dad, and I do all the cooking and most of the cleaning around the house, we are both so grateful for my dad letting us live in his house.”

    2. How has this relationship changed you as a person?

       “I think that dating Charlie has given me more confidence. When you are in an interabled relationship, you are almost guaranteed to get looked at in public. Being with him has taught me not to care what other people think when I get looked at like I shouldn’t be with him or like I was crazy for being with him.”

    3. Was  Charlie’s family afraid of you dating him? (Follow up) Did you have to earn their trust?

      “ I don’t know the answer to that. I’m sure there were some apprehensions about it at first, and I’d like to think that I’ve earned their trust.”

    4. Being Charlie’s caregiver is easy now because you’re young, What do you plan to do when you both get older and your needs change?

       “I want it to just be me for as long as I can, we have talked about this and when I am no longer able to take care of Charlie on my own, that is when we will look into getting help.”

    5. Are you hesitant to get married due to the disability marriage penalty? The assumption is you would have to take on the financial burden as well as the caregiving one.

     “Absolutely, it amazes me that disabled people still don’t have marriage equality, maybe that stems from the assumption that disabled people are not worthy partners, I don’t know. It scares me as of now because I don’t make that much money and I have student loans to pay off and bills, and we don’t even have our own home yet. Charlie has a bachelor’s degree and tries so hard to get a job and has yet to have success, but hopefully one day a company will see all of his potentials and he will have a job.”

    "Love must be sincere. Hate what is evil; cling to what is good. Be devoted to one another in love. Honor one another above yourselves."Romans 12:9‭-‬10 NIV
    Questions for Charlie:
    1. On the subject of engagement, everyone always focuses on the female. as a disabled male, the expectation is that you will never get married. What did it mean to you to be able to “pop the question?”

    “Honestly, I never thought I would get to that point with someone. I was so used to getting to the CP part of the discussion and people disappearing. I knew very early on that Margaret was the one and knew Disney would be the place. When it came time to pop the question, I thought I would be nervous, but I was not. To me, It was the easiest question I ever asked.”

    1. How can advocates like yourself, break this false expectation of people with disabilities unable to love?

    “Society views disabled people as unworthy of love. To break that ableist view, Margaret and I always post pictures pretty much daily on each of our Instagrams of places we go, etc. We are also not afraid to be all over in public either.”

    1. How has this relationship made you more independent not only physically but as a complete person? (Follow up) If God forbid you guys broke up, Are you afraid you’d have to move back home or into a group home facility?

    “My relationship with Margaret has definitely made me more open and vulnerable. Margaret has always allowed me to be my true self around her and we talk about anything and everything. If we ever broke up, we would no doubt find our way back, there’s no one else for me.”

    1. Was there any aspect of your life as a whole that you will reluctant to let her see or help you with?

    “No that were any aspects of my life that I was reluctant for Margaret to see or help with. I think her experience with people with a disability made everything easier. Margaret was very open about wanting to learn about my care and was helping with getting me dressed, showering, and bathroom stuff from the beginning.”

    1. What do you say to any skeptics that believe that Margaret settled for you and she could do better?

    “To society, our love is as real as it gets. Just like me, Margaret thought she would never find something like this. Margaret never saw my CP or my wheelchair first, she saw me as a person. I know for sure society thinks well he can’t do anything and as a result sees no value. I do plenty for us and Margaret makes me want to be the best version of myself every day.”