The Advocacy Life Podcast & Blog

Tag: Disability Awareness

  • 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.

  • Communication

    Communication

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  • Blowing off Steam

    Blowing off Steam

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  • Life and Time

    Life and Time

    Happy Wednesday, my dear friend. I want to begin this blog by saying thank you for your time. Time is such a strange gift, isn’t it? We can’t keep it. We can’t make more of it. We can only lose it, waste it, or make the most of it. When you have a disability like mine. Time seems to go slower. There’s no spontaneity in my life. Either I or someone else must plan every detail. Some days I feel like a tree is growing but not moving. This is not the ideal life, but I am so thankful for it.

    Click Here to Read the Rest: Life and Time

    Some people look at my life and think it must be a living hell. Once, I was walking through a mall. A father saw me look at his child and said, ‘’Thank God you’re not like them.” Referring to my brother and me, the tree grows vertically in the same way the spirit should. I remember feeling bad for this man. Yes, my pride was hurt. The comment was rude. I was wondering how you spent his time. Worrying and being scared. life has its own rhythms and seasons that we can’t possibly comprehend or control fully.

    ‭John 12:8 NIV “You will always have the poor among you, but you will not always have me.”

    It’s easy to look past the tree because it doesn’t move; it just sits there. Sorry, I had to make myself laugh. it would be wonderful for me to always want to blog about all the things I’ve done and places I’ve gone. Those agreed memories and wonderful experiences, but that’s not my daily reality. Most days I’m in front of my tablet or laptop, making Zoom calls. I make sure my calendar is up-to-date. Everyone wants to live a life that is full of joy and great memories That’s a wonderful goal, but it’s not going to happen every day.

    I always get a little offended when someone says they’re bored. For those of us in the Western Hemisphere of the world, we have so many options for what to do with our time. I know that sounds foolish, but you don’t have to work wherever you work. You don’t have to pay your bills. Yes, there are consequences if you don’t. However, there are plenty of people content to live off the grid and off the land. There are people who make plenty of money at home playing video games. To become a doctor, you have to spend 8 years of your life in medical school.

    There are people who spend hours a week in chairs receiving chemotherapy. There are people who are spending their time behind bars. I know the local news has moved on, but there is still a war going on in Ukraine. You may be tired of scrolling through TikTok, but don’t forget about those who have become refugees to avoid bombings in Israel and Gaza. Life and time are about perspective. We have all felt like trees Once in a while, remember that the figure gives life. Without their oxygen, we can’t live, and without our carbon monoxide, they can live. Your life may not be perfect. Sorry to tell you this; it’s never going to be. You can be aware of how you spend your life and your time. As always, thanks for your time. See you next week!

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  • Broken Wheelchairs & Smiles

    Broken Wheelchairs & Smiles

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  • Gratitude V. Complaining

    Gratitude V. Complaining

    Happy Thursday friends. I’ve had a very troubling week. I know today is Thursday but since my podcast was released on the 15th which fell on a Wednesday I decided to push this back a day Have you ever woken up feeling like everything’s just wrong? Like the whole world’s against you? It’s something we all feel sometimes. But have you ever stopped to wonder why? Is it because the world’s just messed up, or is there something about us that needs fixing?

    I’ve always been someone who sees the bright side of things. Even when it seems like everyone’s complaining about what they don’t have, I try to focus on what’s good. Sure, there’s a lot of bad stuff out there—violence, discrimination, you name it. But that’s not what I want to talk about.

    What bugs me is how we complain about every little thing just because our lives aren’t perfect. In this post, I want to compare some common complaints with my own experiences. Not to moan and groan, but to show that even when life’s tough, there’s still plenty to be thankful for.

    ‭1 Thessalonians 5:18 NIV‬ [18] give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

    Let’s start with feeling tired. We’ve all been there, right? Wanting to stay in bed a little longer. But for me, getting out of bed isn’t so simple. Every morning, I need someone to help me, which makes me see tiredness in a whole new light.

    Then there’s the whole job situation. Feeling like you’re not making enough money, hating your job—sound familiar? It’s something I’ve felt too. But for me, the biggest challenge isn’t my disability—it’s the money struggles that come with it. The day I get my first paycheck? It’s gonna be a big deal, let me tell you.

    And traffic? Don’t even get me started. As someone who can’t drive because of my disability, I rely on public transport. And let me tell you, it’s not always smooth sailing. What might be a quick trip for someone else can turn into an all-day ordeal for me.

    I could go on and on, but you get the idea. We need to stop taking things for granted and start appreciating what we have. As they say, one person’s trash is another person’s treasure. Instead of always wanting more, let’s learn to be happy with what we’ve got. So, I hope reading this makes you see things a little differently. Thanks for reading, and feel free to share your thoughts in the comments below.

    Podcast also available on YouTube

  • Perseverance

    Perseverance

    In the May 15, 2024 episode of The Purposely Broken World podcast, Kevin Descilson talks about how perseverance can be a superpower, even in the face of disability. He discusses the importance of making the best of a bad situation and emphasizes that having the right perspective is key to maintaining a positive attitude. Don’t forget to share and encourage your friends to subscribe!

    SHOW NOTES 

    https://www.ada.gov/ To learn about the Americans with Disabilities Act

  • The Voice

    The Voice

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  • Passing the Baton

    Passing the Baton

    My legs were burning when I went to bed the other night, but I was content despite having a sore back. I was on my laptop or tablet from 11:00 in the morning until 11:30 at night. My brother asked several times, “Are you done yet? Where is your finish line? Something has to be said so someone else can finish the job that people before me started. I must issue a favorable warning before continuing. I might make some unjust comparisons in the course of this writing. It is not to offend anyone; it is simply an illustration point. 

    ‭Philippians 3:13-14 NIV‬ “Brothers and sisters, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead,  I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.”

    The work I do to advocate for those with disabilities is not for me; it’s for someone in the next generation. So they don’t have to fear society and not be seen as equal by their peers, whether they have a disability or not. People don’t want to admit this, but there are people out there who want people with disabilities dead after a certain age. After they stop being cute, we need a social movement to make it okay for people with disabilities to live and thrive in their communities. Home and Community-Based Services (HCBS) is a great concept and it will lead to system change eventually. Parents of a disabled child should never have to fear the day they can no longer be there for their child. Working with those who are the most vulnerable cannot be seen as a dead-end job. It needs to be seen as a fulfilling career. To use an antiquated term, this has to stop being ‘pink-collar work.’

    Speaking of work, those of us who should be working should be offered better jobs than greeters at Walmart or in the back of a restaurant washing dishes. Do our hands have to shake when we hand our resumes to a potential employer? The first concern of an employer should never be, “How much is it going to cost to accommodate you to work here? We have to stop being inspirational just for going to college. I know so many individuals who have finished their college degree but cannot find meaningful employment because they need their health benefits.

    FDR
    "In these days of difficulty, we Americans everywhere must and shall choose the path of social justice—the path of faith, the path of hope, and the path of love toward our fellow man."

    The LGBTQ+ community fought for several years to have marriage equality. I am sorry to say this but we still don’t have marriage equality because people with disabilities are still penalized for wanting to get married. I feel like there is a false illusion that if people with disabilities had children, it would be more of a burden on our society to take care of them. Most disabled parents are more loving and caring than able-bodied parents. Yes, they will need more support but that means more jobs and more opportunities for people to see us as part of their local communities. People like me who look different should not be ashamed to be on a dating app. People don’t understand what it’s like to be afraid to talk to a pretty girl. Imagine what it would be like not being able to talk at all to that same girl.

    People with disabilities are currently in financial and social slavery! Brad Lomax and Judith Heumann did their part. A generation later, the Americans with Disabilities Act (ADA) was a gigantic step forward. As a community, we need to come together and stop letting society divide us.

    I will continue to work with the system so that one day someone can either emotionally, mentally, or physically stand up for others. I’m proud to be a nobody. My name will not go down in history books. I work so that one day someone can get married without fear. I work so a mother will not have to cry when they have to hand over the care of their child to someone else. I work so that one day someone you know using a wheelchair will not be seen as an inspiration when they are the CEO of a Fortune 500 company. This may not make sense to a lot of people, but one day it will.

    Disability does not care what color you are on the outside. Your sexual orientation is of no consequence. Your political views are irrelevant to people with disabilities. The disability is just part of the person, not the whole person. I know I said all this before on other blogs. I probably sound like a broken record. I’ve never asked my small audience for anything, but I asked that you please share this with someone who has no concept of disability. To someone who thinks we are less than. We are not lost. We are the ones who are strong because we value life, cherish our blessings, and take advantage of the opportunities we’ve been given. We might be broken on the outside, but some are even broken on the inside. we understand that our lives have meaning. Sometimes it’s better to have a life of struggle with a great ending than to have a life without knowing or wanting the destination because you’re searching for the illusion of perfection.

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  • A “what If” Game

    A “what If” Game

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