What are you willing to do to get what you want?
How willing are you to take a risk, putting yourself all out there, for something you believe would work to your benefit and the benefit of others?
Are you willing to push yourself to a physical limit?
Are you willing to literally scratch, crawl and climb your way to your goals?
When talking about taking risks, a phrase that actually has helped more than it has any right to: “In life, you can just do things.”
And largely, that is true.
For the average able-bodied citizen, more often than not, risk taking is mind over matter. Sometimes there are financial risks, sometimes you might even put up reputational risks, but overall: no one is physically stopping you from pursuing your goals.
But, that’s the key.
For the average able-bodied citizen, that is no problem to simply get up and work towards their goals. The world is largely built for someone like you to be able to conquer it.
The world is built for the able-bodied.
If you are not able-bodied, or more specifically, you have a disability that prevents you from living a life society has built up, then your simply living life becomes a challenge, let alone the challenge of pursuing your dreams.
As of 2024, there were 45.8 million U.S. citizens who reported having a disability. This figure may or may not include the number of people with “invisible disabilities,” or a disability not immediately identifiable via simple observation.
People with Disabilities belong to the largest minority group in the world, and anyone can join them at any time.
Even those from powerful families.
During the 1920 United States Presidential election, the Democratic Party would run a ticket of James M. Cox, the then-Governor of Ohio, and his running mate Franklin Delano Roosevelt, most recently the Assistant Secretary of the Navy.
James Cox was paired with Roosevelt due to his youth (only 38 during the time of the election), his geographic position (New York being a major battleground state) and his name value.
They lost.
Then, nine months later on August 10th, 39 year old Franklin Delano Roosevelt would come down with chills and fatigue after a long day of strenuous activity. Within days, his legs would become paralyzed.
Roosevelt’s doctor would eventually diagnose him with polio, a then-typically childhood disease.
While historians have retroactively suggested it was more likely Guillain-Barré syndrome and not polio, for the sake of the story, and since there is a lack of consensus, the diagnosis shall remain referred to as “polio”.
Regardless of what is the proper diagnosis, the young aspiring politician joined the largest minority group in the world.
Of course, it doesn’t take a historian to recognize FDR would go on to be elected New York governor in 1928 and United States President in 1932, so surely his disability was not a factor in his electability, right?
Who knows? They hid the extent of it from the public.
FDR, the political establishment and the mainstream media knew the extent of his disabilities. They all knew FDR needed a wheelchair to get around, assistance getting in and out of his car, specialized leg braces to hold him up while standing and a bolted-down podium or the arm of someone next to him.
The general public knew he had previously suffered from a bout of polio in 1921, but had largely been led to believe he had mostly recovered and that the aftermath was not nearly as devastating as it was in reality.
FDR threw himself into advocacy for victims of polio. Roosevelt deserves all the credit in the world for what he did do.
After FDR’s bout with polio, he would travel to Warm Springs, Georgia for rehabilitation and their therapeutic warm springs. He would later purchase the facility and transforming it into a dedicated polio treatment facility. In 1938 he established the National Foundation for Infantile Paralysis, which was coined (no pun intended) later (then officially) as the “March of Dimes,” as a dime was all that was requested for a donation.
Side note, that is largely why FDR’s likeness is on the dime today.
However, what FDR failed to do is more relevant to the story.
FDR didn’t simply fail to disclose how impacted he was from his bout with polio; he actively worked to conceal the severity of it. The Press knew there was an informal agreement in place: no press credentials if photos are taken of FDR above the waist, or being assisted out of his car, or while sitting in his wheelchair.
Basically, the administration told the media to keep this secret from the public, and they obliged.
Often, this is painted as almost “doing Roosevelt a solid.” That the media held itself to different standards or that the general public would have proverbially sent FDR to the glue factory had they known the extent of his disabilities.
It was clear that the era of FDR was not kind to those with disabilities, or “cripples” as was the word used back then. Eugenics was seeing peak popularity and the general political consensus was that the electorate would not elect someone with such physical disabilities. Putting yourself in the shoes of FDR in the time, you could understand why the decision was made, even if you disagree with the decision itself or especially the collaboration between the government and media to make it work.
This is a clear cut example of a lack of transparency from the government and media. Not only did they know the full extent of the disabilities, they worked together to hide it from the public.
The Secret Service and FDR’s staff arranged venues meticulously. Ramps were built and then often draped or disguised. He arrived at events before crowds, was already standing or seated at the podium when audiences entered, and remained in place until they left. Speeches were given from behind sturdy lecterns he could grip for support. Car arrivals were staged so he could be helped into position out of sight.
Secret Service agents would sometimes physically intervene (reportedly exposing film or knocking cameras) if a photographer broke the aforementioned rules, but mostly the rules were self-enforced.
Of the tens of thousands of photographs taken of FDR during his presidency, only a tiny handful show him in a wheelchair, most of which were taken privately or by family.
It would be only after FDR’s death in 1945 that the true extent of his disabilities was revealed. The most powerful man in the world of the previous twelve years was actually wheelchair bound and was putting on methodical acts to make his visible disability into an invisible one.
Of course, the public would only really find out said true extent roughly 40 years later, when Hugh Gallagher released FDR’s Splendid Deception in 1985. The general public would take this as a story of heroically overcoming polio and disability.
A more pointed opinion came from many disability activists, who recognized the most powerful man in the world was wheelchair bound and hid it, showing the world a disability was something to hide or would be a disqualifying factor to a political career.
The world, let alone the United States, was not built for those with disabilities, and the man who could’ve done something to minimally fight the stigma and maximally change how the United States treats disabilities had done plenty for victims of polio, but little for those with disabilities in general.
But this is how one person responded to their disability. Others refused to not be seen.
Five years after the true extent of FDR’s disability was revealed, disability advocates had decided enough was enough.
With the Americans with Disabilities Act, the would-be most sweeping act of disability rights in history, stalling out in Congress, on March 12th, 1990, over 1000 activists showed up to DC to call for its passing.
A group of around 60 advocates would arrive at the steps of the Capitol Building, exit their wheelchairs and mobility assistance devices, and began to climb, crawl and drag themselves up the stairs of the Capitol.
Young and old, disabilities of all stripes, made this trek to DC and crawled with a message: “We refuse to not be seen, heard and considered any longer.”
Perhaps the most iconic of the activists participating in the 1990 Capitol Crawl was 8 year old Jennifer Keelan-Chaffins, the young activist with cerebral palsy who defiantly screamed out during the crawl:
“I’ll take all night if I have to!”
The protest worked. After the long stall, Congress was forced to spring into action and the ADA was signed into law on July 26th, 1990. Only four months later.
FDR would go to great lengths to hide his disability, coordinated greatly between his staff and the media to keep it hidden, and it would take 45 years after his death for the major legislation to be implemented.
The people who got the ADA passed into law were the very people the law was meant to protect and serve. The unelected, unheard minority came forward to force the issue, refusing to be ignored any longer.
Today, the anniversary of the ADA’s passing, we recognize the fight People with Disabilities underwent to earn their own right to self-determination.
You often hear stories of People with Disabilities “overcoming” their disabilities, often called “Inspiration Porn.” You may have seen something similar; a man in a wheelchair doing pull-ups with the caption “What’s your excuse?” or a young girl with a physical disability with the caption “So Brave!”
That’s not what this is.
This is deserved recognition and the giving of flowers to those who fought for the same right to exist as everyone else. When no one came to help, they made it impossible to not be seen or heard.
Very rarely do you see such successful direct action in the United States.
Regarding FDR’s “Splendid Deception,” the stance from the United States Pirate Party is clear: the coordinated effort by the government and the media to cover up Roosevelt’s disability, and the extent to which they took it, is shameful and displays a lack of transparency.
When we say “Opening up the government,” we mean calls for transparency; ie, the government shouldn’t be keeping secrets from you.
The disability FDR hid was not itself a shameful thing; the fact that he felt he needed to hide it was shameful. The media’s coordination was shameful.
There were citizens with disabilities in the 1930s and 1940s who had one less role model to look up to without ever realizing it. FDR is often considered the greatest president in the history of the United States, but to many disability activists, he came up short and allowed a stigma to carry on for 45 years after his death.
FDR was a powerful man with political aspirations. It is a shame he felt like his disability would hinder his aspirations in any way.
But, in choosing to keep the extent of his disability a secret, he perpetuated that the shame was in some way valid or justified.
In March of 1990, that shame was finally put to bed, so that four months later, it could be laid to rest.
Since the time of the passing of the ADA, folks ranging from James Langevin to Tammy Duckworth have found great political success without their disabilities being viewed as a hindrance or point of shame. The stigma around disability hasn’t subsided, but it is far removed from needing to elaborately hide it from the public.
Self-determination is something all people are entitled to, and for People with Disabilities prior to 1990, their pursuits were limited due to structural and foundational limitations. In the years following the ADA’s passing, society has built up a world that accommodates them as well, helping remove unnecessary hurdles to simply living life and pursuing your own self-determination.
There is not a single human or group that deserves less self-determination than the rest, or one that deserves more than others.
Not being able-bodied should not be a disqualifying factor.
I have been blessed to be largely able-bodied and able to pursue most of what I want in life. Having Duane’s Syndrome, the only thing I’ve ever been kept from doing is playing baseball (left handed batting stance doesn’t mesh well when you physically cannot move your right eye to the right). I have never had to claw or scratch or literally climb to earn my self-determination.
But I forever stand next to those that have had to do so.
The United States Pirate Party wishes to see a world where disabilities do not need to be hidden out of fear of being aspirationally kneecapped. A world where the media and government do not keep secrets from the public, no matter how “noble” or “justified” the rationale is. A world where self-determination is honored at every level.
A Pirate will fight for it all their life if they have to.
uspirates.org/through-the-spyg…
noyb.eu
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Bernard Dubuisson
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in reply to noyb.eu • • •did you know that a standarf to express user preferences regarding privacy already exists since... 20 years?
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