Tag: Disability Awareness

  • The Illusion of Disability Hierarchy

    The Illusion of Disability Hierarchy

    September Community Blog

    There’s no definition of “disability hierarchy,” and I think that’s on purpose. It is a construct, a trick to keep people with disabilities fighting endlessly over the same limited resources. It makes one disabled person seem “better” or “worse” than another. This artificial division only hurts us all, preventing us from focusing on the genuine problems we face.

    Everyone has things they’re good at and things they’re not so good at. That’s just how people are. When someone has a disability, these strengths and weaknesses often just show up more clearly. My life is a perfect example. I need a lot of help with physical activities every day–like bathing and getting dressed. Many people might see this as a big weakness, a sign that I can’t do things on my own. I was once told that,

    “Your life is simple because people do everything for you.”

    My experiences have taught me something important. What seems like a weakness can hide enormous strength. At habitation programs I’ve been to, I’ve met many people who could move around much better than I. They can go to the bathroom by themselves and perform many daily tasks that I can’t. But many of these same people looked to me to speak for them. They couldn’t talk to explain what they needed or wanted. In those moments, my “weakness” became their strength. My ability to speak up, to ask for respect, and to fight for what’s right became an important asset for them.

    Isaiah 45:9 NIV  “Woe to those who quarrel with their Maker, those who are nothing but potsherds among the potsherds on the ground. Does the clay say to the potter, ‘What are you making?’ Does your work say, ‘The potter has no hands’?

    This shows why the idea of a disability hierarchy is harmful. It makes us look at easy-to-see differences and judge who is “more disabled” or “less able.” But being able to do things isn’t just one simple thing. It’s a mix of physical skills, thinking skills, feelings, and how we talk to each other. Someone who needs a lot of physical help might be incredibly smart or have a spirit that inspires everyone. Someone who can’t speak might show so much through their eyes or actions.

    My journey, from needing total physical care to becoming a forceful advocate who speaks at big events and has a popular podcast, shows how strengths and weaknesses work together. My physical “weakness” has actually made my mind sharper and made me want to fight even harder for others. It has given me a way to understand and speak up for those who might not be heard.

    To move forward, we need to get rid of this harmful idea of a hierarchy. Instead of comparing needs or ranking disabilities, we must see the true worth and special talents of every person in the disability community. We need to understand that real strength comes from working together, from making each other’s voices louder, and from supporting all the different ways we give and get help. Only then can we truly unite to demand the resources and respect we all deserve. We won’t be broken groups fighting over scraps, but a strong, united force for change. This September, let’s promise to see all the different strengths in our community and say no to anything that tries to divide us.

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  • Advocacy day 1 Podcast

    Advocacy day 1 Podcast

    My Start in Advocacy

    Greetings, my friends, and welcome. In this world, it’s not always easy to understand the path you’re meant to follow. For a long time, I was lost. When I was 18, I was very disappointed in myself and in the world because I could not go to college. At that time, it was not in the cards, and I was very angry. I had basically given up and accepted the fact that I was worthless and I couldn’t do anything.

    That all changed because one person didn’t give up on me. My school had a transition coordinator who always had my best interest at heart, even though I was, without a doubt, the most difficult client she ever had. She gave me this application for a course called

    Partners in Policymaking, which she described as a disability learning think tank. I filled it out very, very, very basically—I wrote a bunch of crap because I didn’t believe in myself. But she saw my potential. She made me do better, telling me I could do a better job and made me write an essay on top of it.

    Months later, I got a call from the program director, who said she was very impressed with my words. I had no idea what I had said, even to this day. When I finally went to the first session, I purposely sat in the back because I didn’t feel like I belonged. Where I grew up, I was one of the only kids with a physical disability, and I had no concept of the disability community, or of inclusion.

    But as I listened to the stories of the other families and people in that room, I realized something. I’m not alone. There’s a whole community out there for you. I learned more from listening to their stories and successes than I did from the actual course. It was the first time as an adult I had ever been left alone as a person. I had never even slept in a room by myself before. That experience taught me that I wasn’t helpless, that I had resources, and that I could manage a situation on my own.

    One course, one day, one person changed my life. What was that one course, that one day, or that one person for you? Let me know in the comments below! Full podcast episode is below as well.

    episode transcript

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  • Letters from Limbo Newsletter  September 1, 2025

    Letters from Limbo Newsletter September 1, 2025

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  • Tales of Affection

    Tales of Affection

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  • Letters From Limbo August 11, 2025

    Letters From Limbo August 11, 2025

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  • Birthday Reflections & More

    Birthday Reflections & More

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  • Disabled & Grateful

    Disabled & Grateful

    “I’m thankful for my struggles because they revealed my gifts.”

    Hey friends, I hope you’re having an outstanding day.

    The quote above is from a meme I posted years ago on a random Friday night. I completely forgot about it—until it popped up in my memories recently. When I saw it, I paused. It hit me differently this time. And what I’m about to say next might annoy some people. I might even lose a few followers over it. But I have to be honest. I’ve never actually said this out loud—so I’m using voice dictation just to get it out:

    “Thank you, Father God, for giving me Cerebral Palsy.”

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

    Still reading? If you think I’ve lost it, give me a minute to explain.

    Like most people, I spend too much time on social media, especially since I started this blog. I haven’t made a single dollar from anything I’ve posted (as I promised myself from day one), but let’s be real: if you want people besides your grandma, cousins, and a few loyal friends to read your content, this is one of the few ways.

    I know social media is a battleground now—red team vs. blue team, constant opinions, arguments, and sides. But that’s not what bothers me. Everyone’s entitled to their perspective. I’m not going to stop being friends with someone just because we disagree.

    What does hit hard, though, are the subtle (and not-so-subtle) reminders of the expectations society places on us. At 37, I’m not young anymore—but I’m not old either. I’m not even considered middle-aged. It’s this strange in-between stage, this unspoken limbo.

    When you scroll past all the politics and noise, you’ll find the beautiful things: baby announcements, first day of school photos, wedding pictures, memes about hating jobs and loving new homes.

    And then… there’s me.

    No kids. No house. No wedding photos to share.

    But please—don’t pity me. And don’t call me a martyr.

    It took me a long time to understand that I was created on purpose for a specific purpose. Yes, there are hard days. Life isn’t fair. And a lot of people just don’t get me. But here’s the truth: if I didn’t have this disability, I wouldn’t be writing this blog.

    There are plenty of writers—disabled and able-bodied—but none of them have my story. My perspective. And that makes this blog uniquely mine.

    I don’t waste time playing the “what if” game. I focus on what is and what can be. The closest I’ve come to “what if” is something my brother and I once agreed on: without our disability, we probably wouldn’t be as humble, patient, or grounded as we are today.

    Disability changes how you see the world. It gives you strength you can’t explain. Honestly, I can only call it what it is: God’s grace.

    Because of it, I’ve seen the best—and the worst—in people.

    When I first started this blog, I thought it would be strictly about disability policy. But sometimes, you can’t ignore when something bigger is working through you. If it weren’t for one of my transition coordinators, I would’ve never joined that leadership training series that launched me into disability advocacy.

    I ended up in a day program for the majority of my twenties I did not like it. I thought it was for those who are forgotten. I was so determined to go to college, just to prove everyone wrong. Fast forward, and now I have parents thanking me for bringing their concerns to legislators, on behalf of the children and adults who can’t speak for themselves.

    Do I still have things I want? Of course. That’s what it means to be human. But growing, learning, and discovering new strengths is also part of the human journey.

    I pray these words reach you in whatever way you need them to.

    I thank God for creating you—and for all the gifts He’s given you, whether you’ve discovered them yet or not.

    Have a great day, and I hope to see you next time.

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  • Moments I Was Made For Podcast Episode

    Moments I Was Made For Podcast Episode

    Description

    In the 5th episode of season 3. Kevin relives his experience attending the joint session of Congress on March 4th, 2025. Trigger warning: this may be moving for some listeners or viewers. As always, if you like this content, please like and share.

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  • The State of Disability in America Podcast Episode

    The State of Disability in America Podcast Episode

    Description

    For the fourth episode of season 3, Kevin describes how he sees the state of the disability movement in America today. This is not factual. This is my opinion. The point is to motivate people to act. If you like this content, please subscribe for more details in the show notes.

    Show Notes

  • The DSP World

    The DSP World

    I wanted to raise awareness to a very big problem in our world today. It rarely gets any publicity; the average person doesn’t even know about it. The truth is unless you are affected by this problem, you don’t even know it exists. The problem is the lack of pay and benefits for direct support professionals (DSPs). What is a DSP? A direct support professional is someone who is paid through a provider agency or an individual to provide support and care to a person with a disability. As long as there are people who need assistance in their lives there will always be need for these professionals. There are four groups of people who are affected by this issue. They are: the individuals receiving the care, the family of the individual, the providers, and the professionals themselves. 

    Let me begin by addressing the individuals receiving the care.  People that have a disability will learn that they often must depend on others to assist them in one way or another.  They depend on the kindness of others to help them live their day-to-day lives. Could you trust someone with your most intimate tasks if you knew they would leave in six months? Just imagine knowing you’re going to lose the person you most confide in, even before they start. People with disabilities can tell almost immediately if the person is going to be good at their job. Most of all they can tell if the person will last. 

    Use your imagination for this next part please. You meet a person named Matt. After meeting him for only four hours, you need a shower. He must first undress you completely. Then he puts you in a shower chair. He then proceeds to give you a shower. Matt does his best to wash your private areas. After finishing and drying you off, he begins to dress you. If the individual is so fortunate, he can direct Matt on how and what to do. The truth is there are many individuals in the disability community that cannot speak for themselves. Therefore, Matt must try to interpret what they are trying to communicate. This is just one of the many duties of a DSP. I hope this brief example can illustrate the need for these very special people. 

    Next, I would like to talk about the direct support professionals themselves.  These professionals receive about 10 to 11 dollars an hour with no promise of growth in their career. Most providers offer little to no benefits at all (this includes sick time or health insurance). As a result if DSPs don’t work, they aren’t paid. This leads to severe burnout. Many times, they sacrifice their own health and well-being to make sure they can provide for their family and/or pay their bills. It’s ironic that they are responsible for the health and well-being of another human when, due to the lack of health benefits such as sick days, they cannot take care of their own health needs. What inevitably happens is the person leaves to another company in hopes of a dollar more. People believe they can use this job as a steppingstone toward a larger career goal. The other misconception is this job will only be a temporary solution until another opportunity opens up. They end up living paycheck to paycheck. The professional waits in limbo until they burn out or they get another job. 

    So why would someone do this job at all? These wonderful people do it because they care for others. They look forward to the moments when their individual lights up when they arrive in the morning for their shift. The relationship between an individual and the professional is truly symbiotic if done correctly. The individual gets a companion to help them with their wants and needs. In turn the professional should receive joy in the knowledge they are doing something to help someone live their life. Some things are worth more than money. It is truly heartbreaking when it is time for the professional to move on. The best way I know to describe this feeling for an individual, it’s like losing a loved one. For the professional, they are left with the memories of a person that has worked their way into their hearts. 

    The family and/or parents of an individual can also be affected by the DSP issue. Try to imagine having a 25-year-old son that you have cared for his entire life. One day someone shows up at your door ready to take him out to the park for the day. You as the parent are told almost nothing about the person who will be supporting your child for the rest of the day. By the same token, the professional knows almost nothing about the individual and the family they will be supporting. Most times both parties are just given a name with a brief description. A relationship of trust has to be formed out of thin air. This sadly is one of the best-case scenarios. Most individuals as they get older lose their family and the professional becomes, by default, their brother, mother, etc. Depending on the individual’s disability, they will rely on their “families” in almost every way. They need an advocate, a caregiver, and a friend. Could you imagine learning to give your complete trust to a stranger every six months? 

    The final group of people that are affected by the DSP issue are the provider agencies. The turnover rate in this industry is incredibly high. Providers cannot keep their staff. They spend money training these professionals and then they quit a few months later. The money is lost. The rates for these staff and providers have not been increased in approximately 10 years. For example if the state allows $15 per hour to a provider, and $10 goes towards the DSP, that leaves the provider with only five dollars to spend subsequent overhead, including important items like gloves and vehicle maintenance. The providers cannot give their staff benefits or raises if they are barely able to keep themselves above water. 

    The direct support professional problem in my humble opinion has reached crisis levels not just statewide but nationally as well. As long as there are people, people will always need care.  This industry is not going away any time soon. The system will never be perfect but something needs to be done now. This needs to be a call to action. We need to contact our state and federal officials to educate them on this very real problem. If we don’t act now people with disabilities may not have people around us to help us live our lives. 

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