Subscribe to continue reading
Become a paid subscriber to get access to the rest of this post and other exclusive content.
Tag: disability
-
Down but Never Out
Subscribe to continue reading
Become a paid subscriber to get access to the rest of this post and other exclusive content.
-
The DSP World
The other day I was going past some old writings something I do from time to time to see how I have improved. This was one of the first pieces i ever wrote as a blog almost 10 years ago. The subject matter is still relevant today. Hope you enjoy please share.
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.
The Advocacy Podcast
Living Beyond Disability Books
Both books are available exclusively on Amazon.
Subscribe to Letters From Limb. Newsletter
This is an exclusive weekly blog on the more fun and creative side of Kevin and his colleagues..
Where the Ramp Ends
This is an affiliated podcast that the advocacy life often collaborates with on Check it out today available on all podcast platforms and YouTube..
Donate to the Advocacy Life Podcast & Blog
One-TimeMonthlyYearlyMake a one-time donation
Make a monthly donation
Make a yearly donation
Choose an amount
$5.00$15.00$100.00$5.00$15.00$100.00$5.00$15.00$100.00Or enter a custom amounts
$
Your contribution is appreciated.
Your contribution is appreciated.
Your contribution is appreciated.
-
The Kennedy Family & Disabled Americans
“A snake pit, where they live in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo.”
Robert Kennedy Senior made this statement when he was visiting Willowbrook in 1965.
Willowbrook State School was a state-supported institution for children with intellectual disabilities. Designed to accommodate 4,000 children, by 1965, Willowbrook had a population of 6,000, and a scandal soon erupted over news of the institution’s horrendous conditions and questionable medical practices. It was not closed for another 2 years despite all the outrage. Would you want your child to live in these conditions?
Disability does not have a political party. A disability does not have a skin color or a specific ethnic race. Disability is America. The only two things certain in this world are death and disability. What makes America great is that we learn from our past so we don’t repeat the mistakes we have made. Disability is not waste, fraud, or abuse. Disability is an example of Hope and prosperity in the American dream. The American Disability community is an example of living prosperity and endurance.
It’s hard to pinpoint the exact birth of the disability rights movement because disability has been around since the beginning of time, and it will be there until the end of days. America was introduced to the harsh reality of abuse through Robert Kennedy Sr.’s poignant account. Devoid of proper respect and support. Our community faces suffering and death. An autism diagnosis is not evil or a death sentence. A wheelchair is not a confinement, but a tool for opulence.
This is the current battle that disabled America is facing. We won’t stand for our brothers and sisters being locked up. We aim to help people live fulfilling lives. In the land of the free and the brave, we uphold truth, justice, and the American way as a testament to our identity. Living with a disability presents many challenges. While that’s a fact, things worth pursuing are rarely simple.
“We choose to do these things not because they’re easy, but because they’re hard.”
President John F Kennedy made this statement when referring to reaching the Moon in a decade. We have the same privilege to reach for the same stars as anyone else. In America, we do not fear challenges; we embrace them so we can grow. America today is making choices out of fear and misunderstanding. I believe in America, I believe in its people. We still have time to change course. To see value in all of us. Our chosen elected officials need to listen to us.
'“ Do not seek revenge or bear a grudge against anyone among your people, but love your neighbor as yourself. I am the Lord. 'Leviticus 19:18
“I don’t think people should take medical advice from me.’
This statement was made by Robert Kennedy Jr. The current Secretary of Health and Human Services. There will always be misconceptions around disability and our healthcare. However, if we are left out of the conversation, we cannot help the country move forward. The current administration and the disability community cannot be enemies, we must be allies to achieve tomorrow’s victories. Without disability, America will fail because we are America.
The Advocacy Podcast
Living Beyond Disability Books
Both books are available exclusively on Amazon.
Subscribe to Letters From Limb. Newsletter
This is an exclusive weekly blog on the more fun and creative side of Kevin and his colleagues..
Where the Ramp Ends
This is an affiliated podcast that the advocacy life often collaborates with on Check it out today available on all podcast platforms and YouTube..
Donate to the Advocacy Life Podcast & Blog
One-TimeMonthlyYearlyMake a one-time donation
Make a monthly donation
Make a yearly donation
Choose an amount
$5.00$15.00$100.00$5.00$15.00$100.00$5.00$15.00$100.00Or enter a custom amounts
$
Your contribution is appreciated.
Your contribution is appreciated.
Your contribution is appreciated.
-
All Dressed Up
Today, let’s chat about clothes—not from a fashion standpoint, but how they make us feel. Most people feel comfortable working from home in socks, shorts, and T-shirts. I imagine some of you might feel slightly envious when I say that’s my usual work attire. Working from home truly is a blessing, especially for accessibility. It’s a gift I never take for granted.
If I worked a typical job, I’d have to navigate public transportation and spend extra time getting dressed. Yet, here’s my paradox: I love getting dressed up! There’s something about wearing a freshly ironed shirt and a tie that makes me feel invincible like I’m donning a suit of armor. It might sound a bit vain, but looking sharp boosts my confidence. When people think of disabilities, they often picture someone disheveled or in poor health. Dressing up helps counter that stereotype, and people stare a little less.
Ephesians 6:11 NIV [11] Put on the full armor of God, so that you can take your stand against the devil’s schemes.
I’m not ashamed of my disability, but dressing well feels like the closest thing I have to a day off from the assumptions people make. It may sound odd, but it makes perfect sense to me. I love showing people that those with disabilities can lead successful, goal-oriented lives.
There’s an old saying: “Dress to impress.” If you want people to see you differently, sometimes you need to show them a different side of you. Some people need to see the miracle before they believe it. I’m not claiming to be a miracle, but I see the miracle in the people who help me get ready, making sure I look my best. That’s the real magic!
I know only a handful of you read this blog It comes out, but I hope when you get dressed for work tomorrow, you’ll take a little extra time to make yourself look different. Maybe it’s a new bow in your hair or a tie you don’t usually wear. Do the small things that make you feel good. When you look good, you feel good, and when you feel good, you look good. It takes extra effort for me to look good, so when I do, I feel exceptionally great.
As always thanks for reading. I am always looking for new blog ideas, let me know what topics you want me to cover next.
-
Blind Love
Subscribe to continue reading
Become a paid subscriber to get access to the rest of this post and other exclusive content.
-
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.
-
Investigating wheelchair Rapunzel
This week’s blog is going to be difficult for me to write. When I first started this project, it was meant to uplift my disability community and shed a light in this often dark world. I never want to bash anyone with a disability; our lives can be difficult enough. There is someone out there who is using various social media platforms to perpetuate negative narratives and victimize herself to gain fame and fortune. Alex Dacy, otherwise known as Wheelchair Rapunzel, is a disabled female living with Spinal Muscular Atrophy (SMA). She is not an influencer; she is seeking attention.
I used to follow her on TikTok and Instagram. I am not an influencer, nor am I judging her based on her disability. She makes me sad and angry because she has so many blessings but does not appreciate them. She should be an example for people with disabilities. Instead, she is an albatross for our way of life. In 1977, Judith Heumann the mother of the disability rights movement, was on the cover of Time magazine. In 2024, our community will see negative stereotypes reinforced because of people like Alex. You don’t have to take my word for it; I have a list of sources below that will let you see for yourself.
' “Watch out for false prophets. They come to you in sheep’s clothing, but inwardly they are ferocious wolves. 'Matthew 7:15
I feel it’s important for people with disabilities to support others. When I used to follow her, it was fun to see someone with a major disability going to the club and living their best life. After a few videos, her content got old fast for me because it reminded me of one of those guests on Jerry Springer. There is a medication called Spinraza that stops or severely slows the progression of her particular disability. The closest thing there is to a miracle drug. As long as it is taken daily. Alex calls it “twerk juice.” It does not take a rocket scientist to see that she is using other drugs or alcohol throughout the day. It is also clear that her content is monetized. Good for her.
On a recent podcast, she was asked about her adult entertainment site, which I never followed. Again, not a judgment on her. Individuals with disabilities have sex. However, she cannot claim that she had no other choice and she only did it to support her daughter., You cannot have your cake and eat it too. She is blessed with a beautiful daughter who is showcased frequently in her videos. Honestly, I forgot all about her until a few days ago, when I noticed our community was divided on whether to support her or not after she posted several videos victimizing herself for having Child Protective Services (CPS) make several visits to the home.
CPS harasses parents with disabilities. It is a sad right of passage for a new disabled mom or dad. This is not the case for Wheelchair Rapunzel and her baby’s father. They received home visits because they were high or drunk. The child is being neglected. Don’t take my word for it. Watch the videos for yourself. Her face is always bloodshot, and her partner” is smoking in the videos! One of the sources is an interview with one of her former caregivers. Alexis clearly needs counseling and to seek help. I do wish her the best, but right now she is not someone that should be followed or admired.
There are so many real disabled content creators and influencers who show their lives in the right way. Squirmy and Grubs a man with the same disability, have a YouTube channel with his wife. I commend them for the courage it took to document the struggle they went through trying to conceive a child. I know so many disabled couples who cry themselves to sleep, knowing they cannot have a child. So many men and women just happen to have some sort of disability that is constantly ignored because people don’t take the time to see their hearts. This world is so backward. All I can say is to investigate what you consume with your time and energy; don’t just watch something because it’s trending. As always, thanks for reading. I will see you next week.
Sources:
