I’m back! After a long summer absence. Here is an update from your favorite little podcaster. From the White House to the hospital. This summer was the summer of perseverance. Never give up! Subscribe and share, please.
SHOW NOTES
National Association on Council on Disability
White House celebration on Olmstead decision
SHOW LINKS
Confessions from Disability Limbo
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As I write this blog in late September, I feel the evening chill getting crisp. When you cannot leave the house without a late jacket or hoodie. One or two leaves have already started to change color. This kind of weather usually affects our bodies in some way. Whether that be arthritis for older folks or runny noses adjusting to the cold. My body will feel a little bit stiff for the next week or so. This week I want to try to answer a question that I get asked now and again.
“What does it feel like to have a disability?”
I love pondering on inquiries like this because it’s a challenge both as an individual and as a writer. My short answer is I don’t know; this is my “normal.” I was born with this, Neurological condition, I will die with it. For comparison, imagine if I asked you “What it’s like being an astronaut?
For the record, I was diagnosed at birth with Cerebral Palsy (CP). It is important to note that every person is affected differently by their disability. I can line up individuals with the diagnosis of CP and they will all have different strengths and weaknesses. A disability is like a person no two are equal.
When you look at me it is easy to feel pity and sadness because you picture the things I can’t do. Depending on how you measure success I am a failure. I don’t have a job, I’ve never walked more than a few steps in a therapeutic setting. I need help with most personal tasks. I have not had a real kiss since before Facebook and TikTok became household names. Society has locked me into a systemic financial prison. I know this is a small blog, and a lot of people don’t read it, but I hope this post gets shared. What I’m going to say next is not going to make sense to a lot of people.
Romans 8:18 NIV [18] I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.
“I am thankful for my disability!”
A few weeks back I found myself in the hospital for the fourth time in 4 months. This time with a kidney stone. Fortunately, it was small and able to pass quickly and without infection. I will not deny that it was painful and not fun at the moment. There was one moment, in the hospital when it was quiet. I was able to reflect on how blessed I was and how I’ve been a blessing to others without realizing it. I’ve never cashed the paycheck, and that’s not fair, but I have made a difference with my advocacy work. I realize that my job is to plant seeds of trees that others will sit under one day. I’ve had plenty of awkward moments with new staff, trusting them with my most intimate needs, but still, there are currently two wars going on in this world, and people have forgotten all about it. Not even giving a second thought to the widows and the children affected by these global conflicts.
I’ll be the first to admit that some days I get lonely, but isn’t it better to wait for the right person than knowing a partner is cheating on me? It is wrong that I can only have no more than $2,000 in my bank account at any one time, but if you go to your local Walmart, you can see both the mentally obese and the malnourished. I will always fight for the rights of those with disabilities, but tell me how in the richest, most powerful nation on Earth, we have veterans who have served this country openly, choosing to live homeless because they don’t want to scare their families due to their mental illness.
Life is a matter of perspective. I know I don’t live for this world; I live for the next one, where I will openly walk and dance. I feel sadness for those so stuck in this world that they don’t realize a glorious World is waiting for them.
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As an individual living with Cerebral Palsy (CP), I take pride in being nonpartisan. My disability does not care if I support the elephants or the donkeys in November. Most likely, I will not walk in January regardless of who is sitting in the Oval Office. I may have been born disabled but everyone else is temporarily abled. Your body will fail, and you will need help from someone else to help you live your life. I can see both sides of most hot-button issues if you want to balance the economy ask someone who has a balanced budget on a fixed income for the majority of their life.
I would never impede anyone’s opinions or beliefs, Please be a patriot and go vote in November. Many suggest that eliminating the Department of Education would help balance the budget and bring money back to the states. This is not an efficient way to cut down on wasteful spending. This would be wrong and dangerous for individuals and families with disabilities.
Most Americans have never heard of the Individuals with disabilities education Act (IDEA). The legislation was revised in 1990 under a republican administration. Here is a quick overview of the law. According to Access for Special KidsResource Center (ASK)
I am not ashamed to admit that I had an IEP meeting every year since I can remember. It ensured I had the proper support I needed to thrive as a student. I had a paraprofessional accompany me to every class who took my notes, helped me review materials after class, and helped me with my personal takes. I attended mainstream classes. I was not locked away in the special ed classroom. Every year some of the teachers f thought that’s where I belonged because I was a wheelchair user. I loved proving them wrong. The other students had to see me as a person not just a disability. I was a student just like them with goals, dreams, and embarrassing moments to overcome.
Psalms 41:1 NIV [1] Blessed are those who have regard for the weak; the Lord delivers them in times of trouble.
Disability should not be a burden on society, it should be an asset to their communities. Students without disabilities should not be afraid to approach those who are different. All children should be able to learn and help each other. That is how we build a prosperous future for America The reporter Geraldo Rivera exposed the horrors of Institutional living in the mid-80s. All these years later our population is still being Isolated. What makes one student less than another? Disabled students are placed in out-of-district schools that “specialize in disabilities.” They need to be allowed to see if they can adapt and grow with non-disabled peers before being segregated. The easiest solution is not always the best solution. There should not be a disabled population, versus a non-disabled population, but Americans. We need to move forward not backward.
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Apologies, this was supposed to go out on Thursday in honor of those who lost their lives on 9/11 but I was unwell and could not publish it. I’m reposting this blog I feel there are still lessons we need to take away from the Horrific events of the 9/11 Terrace attacks. We must never forget!
Some days in life are unforgettable, no matter how hard we try. As we passed another anniversary of September 11th, 2001, I can still vividly remember where I was: sitting in my 8th-grade social studies class when the announcement came over the loudspeakers about the horrific attacks at the World Trade Center. It’s hard not to wonder—what would those who lost their lives that day think of the world we live in now?
I remember feeling hurt, confused, and angry. Race and religion didn’t divide us—we were united as proud Americans. There was no talk of kneeling during the national anthem, and political affiliations were the furthest thing from our minds. Fast forward over 20 years, and the country feels more divided than ever. We’ve stopped listening to each other. We’ve stopped valuing each other. Back then, when people lined up to donate blood, no one cared about skin color—all that mattered was that we all bled the same red.
The president is just one man, and we can’t place the blame for all of the country’s problems solely on him. It shouldn’t matter who voted for him; what matters is that we respect him as a fellow human being, just as every person deserves respect. We’ve lost sight of the fact that we can disagree with someone without branding them as racist or socialist. Over 3,000 people died on that day, and their deaths weren’t in vain. They remind us of the importance of our unity and the right to protest without tearing each other apart.
September 11th, 2001, isn’t about conspiracies or advancing social agendas. It’s about honoring the neighbors and heroes who made the ultimate sacrifice. It’s disheartening to think that more than 20 years later, we still haven’t fully learned the lesson they left behind—that we must stand united as a country and as a people.
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I’ve spent the last week and a half watching the Paralympics, have you? I am a proud American and love this country with all my heart. I would have enlisted to defend this nation long ago. Since I turned 18 I made sure to vote in every election, including the primaries. Most people don’t even know who sits on their School boards but I do. I always do my due diligence to research the candidates. That’s what you’re supposed to do. I am part of the American population that has been ignored, and I finally have a way to prove it. There is a sad truth in America. Unless disability affects your life in some way people don’t care about you. A few weeks ago there was non-stop coverage of the 2024 Paris Olympics. Everyone knew that LeBron James carried the flag at the opening ceremonies. Does anyone know who carried the flag for the USA in the Paralympic games?
Steve Serio has participated in several Paralympic games; he is the captain of the US wheelchair basketball team. All the sports channels went crazy when the US rugby team won a medal. Does anyone know what the Paralympic rugby team won? For years Michael Phelps and Simone Biles were on in primetime. The Paralympics have never been in primetime. Is it because the girls who play seated volleyball don’t wear revealing outfits like the ones in beach volleyball? I never saw any tick-tock with Snoop Dogg next to a paralympic athlete. For 17 days there were recaps every night of all the events if you didn’t have the peacock app they don’t televise 99% of the events. Channels in other languagesPromoted the Olympics for months, not this time
Does anybody care? We have all moved on to our fantasy football leagues and pumpkin spice lattes. America likes to preach equality and equity, but when it comes to the disabled we are hypocrites. I feel it is because America has this misguided belief that individuals with disabilities no matter what the diagnosis only serve to inspire and encourage the rest of the population. We cannot be seen as equals because otherwise the rest of America would have to see their mistakes and see their weaknesses. Americans like to pretend we are invincible. Besides liking a real on Instagram that lasts 3 minutes long we cannot be bothered to be moved outside of our comfort zone.
Leviticus 19:18 NIV “ ‘Do not seek revenge or bear a grudge against anyone among your people, but love your neighbor as yourself. I am the Lord.
Paralympic athletes are athletes. Instead of asking Alexa some dumb question ask it to give you a list of all the paralympic records that have been shattered over the last week and a half! Instead of complaining that there’s nothing on Netflix to watch. I dare you to look at a game of Goalball, paralympic bench pressing, or Blindsoccer. Everyone has their struggles but the disability population was not created just to make you feel good about your tribulations. We are your friends, we are your neighbors, and we should be treated as such we should be respected like every American!
i am hosting the Region 7 for SABE Click Here to register before September 6, 2024.
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