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Shredding Project 2025 – Disability Culture Under Attack since 47’s Inauguration Day

I was recently asked to provide my perspective on how Project 2025 impacts people with disabilities in the United States. The following is the full original draft of the edited speech that I was honored to present during today’s 50501 “Shred Project 2025” themed protest at the Indiana Statehouse. I had to edit it due to time, and due to several external factors including rain that was dissolving the edited pages of my speech in my hands as I read them, the speech still lasted over 20 minutes. I hope to post a video soon. Enjoy…

Most of us first heard about “Project 2025” during the 2024 Presidential campaign, though we know that its roots are far older than that. It is the public manifesto, published by the Heritage Foundation, of a political agenda that has been developed over decades to return our nation to a time before our freedoms and human rights were protected by civil rights legislation. A time when only one demographic in our nation truly enjoyed those freedoms and controlled just how much of them other demographics could enjoy. A time when only one demographic was guaranteed to be treated with the dignity and respect that all people should be afforded.

Insidious in its approach to causing the most widespread damage in a way that would initially be imperceptible to most, Project 2025 specifically targets the one demographic…the one culture in our nation, and the world, the largest yet often most invisible minority that crosses every other demographic and is exponentially growing as a result of conditions of trauma, birth, and aging. That demographic is the disability culture. A Culture that has been with us throughout history, that currently represents over a quarter of our population, and that over 90% of us will become a part of either through our own disability or that of a loved one. Did you know that until the mid 70’s there were places in our nation where people with disabilities were not allowed to be seen in public? The last of the “ugly laws” was repealed in Chicago in 1974…project 2025 would undo the progress that led to that and all that we have achieved since…which still isn’t enough, so now is not the time to slow our momentum.

Without going through every page and every aspect of this willfully ignorant dangerous socially regressive policy, I can summarize the ways that Project 2025 impacts people with disabilities, which, again, is a culture that eventually will include all of us and those we love. At its core, it specifically targets and directly harms people with disabilities by removing our hard-won civil rights protections and dismantling an already overstressed infrastructure, intentionally making it more difficult for us to access necessary resources and services that support our independent lives.

During the campaign, Donald Trump claimed that he had no knowledge of Project 2025, yet on day one of his administration, immediately following his inauguration, he signed executive orders that began to pave the way for the Project 2025 agenda, and his administration, including states Governors and Attorneys General, have taken the ball and run with it. Chapter 11 of Project 2025 calls for eliminating the Department of Education and moving the Office of Special Education and Rehabilitative Services to Health and Human Services and other agencies. This creates unnecessary obstacles to coordinating knowledgeable information and resources while also making it more difficult for families to ensure that students with disabilities are able to access a free and appropriate public education in the most integrated setting as promised by both the Education for All Handicapped Children Act of 1975 and the Individuals with Disabilities Education Act of 2004 (IDEA), which our current Secretary of Education with a background in wrestling entertainment knows absolutely nothing about. Our 47th President nominated a Secretary of Education who isn’t qualified for the job, to begin the process of executing Project 2025.

Project 2025’s dismantling of the Department of Education also intends to eliminate earmarked funding, stripping students with disabilities of access to educational institutions like the American Printing House for the Blind and Gallaudet University which provide students with disabilities an avenue for education and support when they can’t receive an equitable education in mainstream public schools. Project 2025 redistributes public school funding into savings accounts and block grants that potentially subvert the requirements of IDEA and Section 504 of the Rehab Act, which for over 50 years has required all facilities and programs that receive federal funding to be accessible for all people with disabilities. Project 2025 further rescinds the Equity protections in IDEA regulations by making it impossible for data to be effectively tracked to ensure that racial segregation and stigmatization are not impacting students with disabilities in the education environment. Our 47th President opened the door wide for this on day 1 with his Executive order on DEI, which declared not only Diversity Equity and Inclusion, but also Accessibility to be discriminatory and illegal practices.

Pages 465 – 469 of Project 2025 enact major cuts and policy changes to key health care coverage, creating significant barriers for People with Disabilities to access the care and support that we need. It threatens Medicaid by cutting funding and services, converting the funding into block grants, instituting lifetime caps, and returning to failed policies like work requirements for eligibility. This, in turn, restricts our access to the Home and Community Based Services that support our ability to live and function independently in the communities we choose, limiting people with disabilities to institutionalized care and living conditions.

It repeals Medicare’s ability to negotiate prescription drug prices, increasing the out-of-pocket costs for the most under employed demographic in our nation. It intends to change the insurance markets in a way that would strip the consumer protections afforded by the Affordable Care Act, allowing a reinstatement of discriminatory practices like denying or charging more for pre-existing conditions, setting lifetime caps, denying coverage based on medical history and excluding basic coverage for mental health and maternity care. It includes requirements of HHS that further violate our privacy and restrict choice, while also restructuring the CDC in a way that mitigates their effectiveness and limits their ability to post scientifically based public health recommendations and guidelines. These policies don’t just put People with Disabilities, who tend to have increased medical needs, at greater risk, they create new people with disabilities by exposing all of us to additional trauma while limiting our access to potential services.

Though we still have a long way to go, due to the civil rights protections of the Americans with Disabilities Act, more people with disabilities are living independently, working, and participating in our economy than ever before. The US Bureau of Labor estimates that 7.6 million workers identified as disabled in 2024. People with Disabilities in the US have a buying power of $500 billion and working age adults with disabilities in the US have a Discretionary Income of $21 billion. Rather than being confined to pages in a specific chapter, interwoven throughout Project 2025 are additional obstacles that would undo that progress by removing the EEOC’s capacity to enforce anti-discrimination laws including Title 1 of the ADA, and weakens the EEOC’s authority to file, mediate, and settle discrimination cases on behalf of all workers, including those with disabilities, while also limiting a woman’s protections under the ADA by not requiring employers who provide health insurance benefits to cover all necessary care for pregnancy-related disabilities. While the EEOC does still function, the Trump administration has made changes in both leadership and policy that have restricted its ability to make new policy or issue guidance, which leaves the door open to further remove the protections it is intended to provide.

Project 2025’s “Mandate for Leadership” restricts Disability and other Social Benefits that support People with Disabilities, including our Veterans throughout our nation. Changes to policy and procedure make it harder for Veterans to qualify for disability status and obtain benefits from the Department of Veterans Affairs. Chapter 10 restricts the Supplemental Nutrition Assistance Program (SNAP) which currently provides about 4.1 million disabled people with vital nutrition assistance, and would eliminate states “work requirement waivers” which would put people with disabilities at risk of losing their eligibility for Social Security and VA benefits.

Pages 583-586 threaten both Section 504 of the Rehab Act and the Americans with Disabilities Act itself by reducing the ability of the Department of Justice to enforce these laws as they apply to the federal government by reducing its ability to address and remedy discrimination. It proposes that the federal government stop using regulations that seek to ensure that “programs accepting federal money are not administered in a way that perpetuates the repercussions of past discrimination” in employment, education, housing, and other areas. Considering that Section 504 (a 52 year old law) was the first piece of legislation in our nation to require all federally funded programs and facilities to be physically and programmatically accessible for all people with disabilities, and the ADA (a 35 year old law) applied and expanded those civil rights protections to include the private and public sectors in regard to employment (Title 1), public entities including State and Local governments and public transportation (Title 2), public accommodations (Title 3), Telecommunications (Title 4), and Miscellaneous provisions that include protections for those who advocate on behalf of people with disabilities (Title 5), this proposal would be a clear reversal in our nation’s intent to protect the civil rights of all people with disabilities, which is a global culture that ultimately includes everyone.

At its very core it violates the intent and spirit of the laws that true American Heroes like Justin Dart, Judy Heumann, and Ed Roberts fought for. If you do not know those names, please take the time to learn about those who spent their lives fighting for the rights that Project 2025 would jeopardize, violate, and repeal. It is our responsibility to honor them and to protect our people and our nation by shredding Project 2025.

I was not born with a disability. I began acquiring disabilities when a young driver ignored my right-of-way and caused an accident that left me trapped in a burning vehicle. This was 20 years ago, before the Affordable Care Act, if I lost my employment and had a gap in insurance coverage my amputations and everything related to my injuries from the accident would be denied as pre-existing conditions. A year and a half into my recovery I had almost maxed out the million dollar lifetime cap on my insurance. I returned to my career directing the full service operations of a university hotel and conference center, with no understanding of how to modify my work to accommodate my disability. I was seeing and experiencing aspects of our world through a disability lens, barriers and obstacles that had always been there but I hadn’t been able to see because they didn’t impact me.

Even the laws that required their removal, not just physically but also programmatically to prevent both intentional and unintentional discrimination, were foreign to me beyond the basics of how many accessible parking spaces, entrances, and hotel rooms we were required to provide based on the size of the operation. I had acquired a culture that included a prevalent history of oppression, exploitation, discrimination, and abuse. A diverse culture that society had not included as it developed around us and, in the grand scheme of things, had only recently begun to recognize deserved to be treated with dignity and respect through intentional focus on equity and inclusion. The challenge of adapting to my disability in the hospitality industry was difficult, and it was not the right work environment for me at that time. Ultimately my position was eliminated and I had to rely on Social Security Disability benefits.

Over the course of the last two decades I have learned so much more about our world by viewing it through a disability lens. I have seen how including people with disabilities in all aspects of work and activities of daily living sparks innovation through the very process of making reasonable accommodations and modifications. When I see an individual or a group of people with disabilities I frequently identify myself by saying “my people”…not to express any misperceived ownership or authority, but to identify that I belong to them and we belong to each other, despite any differences, through our diverse disabilities we can relate to one another. I have come to recognize that through accepting the diversity of our world and ensuring that it is supported through equitable and inclusive practices we all experience a sense of belonging that provides positive real world impacts on our individual and societal emotional health, but none of it can be achieved without providing welcoming and practical accessibility first. These are the things that our current Administration hates about People with Disabilities, because we shine a light on the realities of the diverse and inclusive world that they do not want to acknowledge deserves equity, respect, and dignity. 

Two years ago I approached Indiana’s Vocational Rehabilitation Service, a division of the FSSA under the Administration of Community Living (which also provides oversight for Independent Living services) to explore the concept of taking what had essentially been an occasional public speaking hobby and turning it into a real business that would offer Consulting and Training services built around the concept of Accessible Diversity, Equity, Inclusion, and Belonging. I also became a member of the national ADA Trainer Leadership Network.

Walking Spirit’s mission was to help the hospitality industry and really all places of public accommodation to take a 35 yearlong first step beyond the intended starting line of the ADA to truly start leading a race to change the world through enhanced accessible inclusive hospitality. I had no idea that on his first day in office our 47th President would sign an executive order that includes language clearly declaring the benevolent concepts that my business was built upon to be discriminatory and illegal…at least at a Federal level…but the order also included language that suggested expanding it to the Private Sector. A concept which our Attorney General has requested recommendations for.

9 days after that, a passenger jet and a military helicopter collided over the Potomac, resulting in massive tragic loss of life. That night, before any investigation had taken place, our President, in an internationally broadcast statement, claimed that “dangerous diversity, equity, and inclusion tactics and specifically recruiting individuals with severe intellectual disabilities in the FAA” were responsible for the crash…with zero evidence.

A few days after that our Administration issued a freeze on all federal funding until programs were confirmed to align with his agenda. Independent Living Centers and other organizations that provide vital services to People with Disabilities and other underserved populations all across our nation were unable to access their funding portals to pay their bills sending a message to those organizations, anyone who provides services to those organizations, and anyone who receives services from those organizations that they can hurt us quickly if we don’t comply with their agenda. The administration explained it away as a computer glitch, but it was clearly an intentional warning shot across the bow of our nation’s Disability Community.

Next came the removal of transgender people from our military, which our President justified by calling them dishonest and unreliable…for being true to themselves and open about who they are. Very quickly after that, a lawsuit seeking to declare aspects of Section 504 to be unconstitutional was filed by 17 states Attorneys General including Indiana’s own Todd Rokita. The lawsuit circles around the inclusion of people with Gender Dysphoria in the definition of a Person with a Disability, which was previously determined to be a physical disability by case law. While this was taking place the Justice Department removed multiple pages covering 11 different disability guidelines for U.S. businesses from the ADA’s website.

Next came the announcement of the elimination of the Department of Education and the reassignment of Special Education Services to Health and Human Services…per Project 2025…reinforcing the medical model approach to disabilities as opposed to supporting the social model that recognizes the disabling role that society plays through developing inaccessible infrastructure. Then, just 66 days into the current administration, Robert F Kennedy Jr. announced the disbandment of the Administration of Community Living, which incorporates the Administration on Aging and the Administration on Disabilities among others, leaving Independent Living Centers and Vocational Rehabilitation Services in a state of purgatory and continuing to tear down the infrastructure that supports the Disability Culture and Independent Living Philosophy throughout our nation. The most recent HHS proposed budget cuts will require that the Food and Drug Administration cease routine inspections at food facilities, and cuts to programs that treat drug abuse and mental health…and HHS is no longer collecting data on cancer and other conditions that present as disabilities.

The Disability Culture and Community in the United States has been under attack from the current Administration since Inauguration Day. After his first term Donald Trump was quoted by his nephew, parent of a child with severe disabilities, as saying that “maybe people with disabilities should die”. Last year, during a visit to the Holocaust museum in Washington DC, I was reminded that the Holocaust began with first the social and then the physical isolation and institutionalization of people with disabilities…children and adults…who were then experimented on and killed. We want to say that would never happen in the United States, but our own history does not support that. I do not believe that is the Administration’s goal, but we cannot ignore the fact that they have relentlessly targeted and weakened the infrastructure that supports people with disabilities in our nation, and saying that it could never happen here just opens the door for that possibility. If you are a person of Faith, it’s almost as if God is challenging us as a species to demonstrate that we can learn from our history and prevent it from ever happening again!

We must combat the efforts to weaken our people through strengthening an informed, educated, engaged, and empowered Disability Community throughout our state and our nation. If we do not stand up for our rights, we will watch them slowly get etched away, just as we’re watching our anti-discrimination disability supportive infrastructure get dismantled day by day. Justin Dart, widely viewed as the Father of the ADA, believed that each of us could be leaders…not just in board rooms, on committees, and as supervisors, but in the way that we live our lives, engage with legislators, participate in public meetings, share our truths, and advocate for each other. We cannot allow the human avatar greed, gluttony, avarice, and lies who campaigned for President with a slogan that was foreshadowing for the work we would have to do after he is gone, to burn it all down.  It will be up to us to Make America Great Again if he is allowed to continue, unchecked by our other two “co-equal” branches of government. 

Today, Walking Spirit’s mission, my mission, has become about ensuring we don’t lose the rights that Justin Dart and those with him won for us. We need new advocates and leaders in Indiana to support that empowered disability community. I never intended to go into event coordination, but Walking Spirit’s focus is now on coordinating an unconference for people with disabilities who live or work in Indiana; built around the themes of Disability History, Culture, Rights, Advocacy, and Community Enagagement.

National Leaders like Jim Ward from ADA Watch and Anita Cameron from Not Dead Yet will provide updates on current threats to the ADA and the diverse Disability Community. The event Sponsor, Everybody Counts, Inc is covering the bulk of each attendee’s expenses during the unconference and we have limited space. If you are 18 years or older, able to self identify as a Person with a Disability who lives or works in Indiana, and you want to be an advocate and leader for people with disabilities, please go to https://walkingspirit.org/events and click on the button to apply.

35 years ago the Americans with Disabilities Act was signed into law and the United States grudgingly approached it as the finish line when it was always intended to guide us to start removing disability based discrimination from the world…it’s time for us to cross the starting line and run the race. To everyone who reads this and everyone you can touch, to my people, please help us preserve and expand the legacy of Disability Rights heroes like Ed Roberts, the Father of Independent Living, Judy Heumann, the Mother of the Disability Rights Movement, and Justin Dart, the Father of the ADA by rising to his challenge and Lead On!

A protestor stands in a large crowd on a rainy day, under the limbs of a decorative tree with new green leaves growing. Behind the crowd are brith pink redbud trees. The protestor's sign is a tall rectangular black sign with rainbow lettering that reads "Men of Quality Don't Fear Equality. She is wearing a black stocking cap, a rainbow bandana as a mask over her nose, mouth, and neck, and a black shirt with rainbow lettering that says "FUCK TRUMP". There is another protest sign on the right side of the picture that has the large blue block numbers "86" over large red block numbers "47". This phot was taken at the Shred Project 2025 Protest in Indianapolis on 4/19/25, coordinated by 50501 Indiana.
Jeremy Warriner, a white man with long curly copper colored hair stands with two full prosthetic legs under a white tent on the steps of the Indiana Statehouse as he reads from a speech in his hands. A man wearing camouflage military fatigues and a clear rain poncho stands on the steps behind and to the right of Jeremy. A sound technician wearing a red white and blue jacket stands in front and to the left of Jeremy, adjusting the microphone. Other people sit higher on the steps, watching Jeremy speak to the large crowd.
A close up image of a young woman in her mid 20's with a concerned expression on her face, shoulder length brown hair held back by her sunglasses on the top of her head standing among protestors. She holds a large sign in all capital letters that reads "Autism Doesn't Destroy Families, Oligarchy Does". The word "OLIGARCHY" is in black letters with red outlines. The word "DOES" is underlined.
Image of the top of a pink umbrella next to a wet tree trunk at a protest. The words "History Will Remember" are spray painted in all black capital letters around and across the top surface of the umbrella.

National Disability Employment Awareness Month

A bilateral above knee amputee with prosthetic legs sits in a wheelchair, looking to his left and speaking with a potential client, who is also seated. There is a backdrop behind them with the words "Walking Spirit" across the middle of a purple field.

We’re fast approaching the 19th anniversary of my survival day; the day I lost both of my legs to severe burns sustained in a car accident during my commute home from work…but did not die. October 22nd marks that life altering event for me and my family; my Survival Day. I wrote the following post (with a few minor edits) last year, to recognize October as National Disability Employment Awareness Month. The words are as true now as they were a year ago…

…It’s been 18 years, and the irony that this happened during National Disability Employment Awareness Month is just hitting me. 

Including my college education, I had spent over a decade of my life focused on a career in full-service hotel management. I had experience working for multiple management firms exceeding the standards set by the dominant hotel brands in the hospitality industry. I had the training, and facilitated much of the training, provided by these brands and management firms. I knew March was National Disability Awareness month, but with all of that time engaged with national and multi-national employers and their various human resources offices, I had not heard of National Disability Employment Awareness Month…or, if I had, it had not been given any attention or significance.

To put this into perspective, I did not become aware of National Disability Employment Awareness Month until after I became a person with a disability who was trying to adapt to maintain employment. That’s not really the way it’s supposed to work, though it is not surprising. People with disabilities often get overlooked and represent a largely underutilized, though often highly effective part of the workforce. Despite national efforts to promote employment of people with disabilities dating all the way back to 1945, when Congress passed a law establishing the first week of October as “National Employ the Physically Handicapped Week” which also requested an annual Presidential proclamation. (It’s interesting to note that this minimal social dawning of awareness came so many decades before Title I of the Americans with Disabilities Act protected our civil rights to employment).

Understanding that people with disabilities have always been a diverse minority within our culture, one that actually links all other cultures together, it’s staggering how lack of innovation has been a barrier to access, inclusion, equity, and belonging for diverse people with disabilities throughout our history. Employment of People with Disabilities leads to innovation in the way we find different ways to achieve the same goal by asking the question “how can a person with _____ disability achieve the primary function of ______ job?” The more you think outside of the box, the more you promote and spark innovation, which ultimately enhances productivity and improves the bottom line. Employing people with disabilities is a motivator for this process. 

Apparently in 1945, someone in the US Congress started to get it. The fact that we got a week at that point, along with an annual Presidential proclamation, was a win. It didn’t stop there. In 1947 President Truman established a committee responsible for coordinating and publicizing events to promote and celebrate the week. In 1949 Congress appropriated funding for the committee and in 1954 they were directed to work with state and local authorities to promote job opportunities for the “physically handicapped”. In 1955 they became a permanent organization.

Recognizing that people with intellectual and developmental disabilities could, and should, be able to work too, just like people with physical disabilities, in 1962 President Kennedy renamed the committee the “President’s Committee on Employment of the Handicapped”. This executive order also significantly expanded their charge by directing them to develop employment opportunities for both the “physically and the mentally handicapped”. Congress then redesignated the first week of October as “National Employ the Handicapped Week”. 

Though it was the social term of choice, the term “handicapped” has always had a negative connotation and represents people with disabilities as a social burden. People with Disabilities have worked diligently to remove this word as an identifier for our minority. Perhaps showing sensitivity to this, in 1988 President Reagan issued an executive order renaming and reorganizing the committee into the “President’s Committee on Employment of People with Disabilities”. Congress then expanded and renamed “National Employ the Handicapped Week” to make the entire month of October “National Disability Employment Awareness Month”. 

Before, during, and after the civil rights movement in the United States, people with disabilities have been fighting for their right to employment and inclusion in society. We had a week from 1945 to 1988, then we got a month, then in 1990 we got the five titles of the ADA starting with Title I which protects people with disabilities from discrimination based on their disability in regard to all aspects of employment. Yet, when I was a student in the mid ’90’s earning my bachelor’s in Consumer and Family Sciences with an emphasis on Hospitality and Tourism Management, the ADA was barely touched on during my Hospitality Law class. 

Throughout my career in the hospitality industry, there was minimal focus placed on employment of people with disabilities. No exploration of the benefits that come from hiring people with disabilities, like innovation in the work environment and reduced turnover. Little to no disability awareness training for management or line level staff…despite the fact that disabilities affect over a quarter of the world’s population, which absolutely impacts the service experience and interaction with employees and customers alike. (It’s important to note that the population of people with disabilities is the most diverse minority in the world, a minority that is exponentially growing due to both trauma and natural conditions of birth and aging).

On rare occasions the properties that I would manage might contract with a local service provider who helped people with disabilities find work. More often than not this would be a group home or a day center for people with intellectual and developmental disabilities. They would bring a group of people with disabilities to work for our housekeeping and culinary departments, usually helping with public area cleanliness in the bathrooms, hallways, lobbies, washing dishes, mopping floors, and/or helping in the laundry. These groups would come with a job coach from their organization who was there to support the employee. 

Rarely did we see people with physical disabilities through these agencies. When a person with a physical disability did apply for a job, we would interview them, but I don’t remember any training about what we could or could not ask in the interview. I never received any training on how to ensure that we were not discriminating against candidates with disabilities when comparing them against other candidates without visible or disclosed disabilities. If we had any connections to resources to help us with employing people with disabilities and modifying jobs and work environments as needed, I was not aware of them.

Before I became a person with a disability, I never stopped to consider the training that should have happened when we contracted with disability employment and support organizations. Any time the employee had an issue, the department supervisor would look to the job coach to handle it. Instead of communicating with the employee, the hotel staff preferred to work through the job coach, and more often than not, the job coach allowed it. This did nothing to help the employment relationship between the actual employee and their supervisor. 

We employed people with disabilities to fill the jobs we had difficulty filling but didn’t want to understand their needs. Not once did I ever receive any training to understand how Autism, Down Syndrome, Cerebral Palsy, ADHD, or any other disability might affect the way an employee receives instruction or needs to modify their process to achieve the primary “essential” function of the job. How disabilities might impact guest interaction, whether on the part of the employee, the consumer, or both was never a consideration. Our corporate human resources offices encouraged us to hire people with disabilities because of the tax break the property would receive, not because it was the right thing to do or the best way to fill vital jobs, reduce turnover, and promote innovation. Now, mind you, this was my experience between 1993 and 2008, when I left the hospitality industry to pursue disability advocacy and public speaking. One would hope that there has been improvement over almost two decades, but I’m led to believe that it has been minimal compared to other concepts of diversity. 

Since that time Diversity, Equity, and Inclusion have become the major buzz words in the Human Resources realm of corporate business and culture. Diversity hires are a win, Equitable treatment and pay are major selling points, and Inclusion in the business decision making process builds a sense of Belonging for everyone…which has become the newest buzzword added to “DEI” or “DEIB”. Except, once again, disability tends to get overlooked because “it’s a part of diversity, right?” 

Disability is unique, because while disabilities are a part of diversity, people with disabilities can’t be included in your diversity unless you are Accessible first. Employment of people with disabilities as a constant, vital, equitable, and inclusive part of your team helps to ensure that you are actually able to achieve those DEIB goals by adding the “A” to truly create Accessible Diversity, Equity, Inclusion, and Belonging for employees and consumers of your operation.

Why does National Disability Employment Awareness get a month? Because people with disabilities are vital to the future life of all operations that function in the public sector as both employees and consumers. People with disabilities are also vital employees to have in state, local, and federal government, as these are often the people whom those services support. Why does National Disability Employment Awareness get a month? A better question is why doesn’t National Disability Employment Awareness get every month? 

(Image Description: Jeremy Warriner, a bi-lateral above knee amputee with prosthetic legs sits in a wheelchair, wearing a blue polo shirt. He is looking to his left and speaking with a potential client who is seated. There is a backdrop behind them with the words Walking Spirit across a purple field.)

Advocating for the Latonya Reeves Freedom Act

An image of 25 people with diverse disabilities standing in front of a large patriotic van with the words Disability Freedom & Justice on the side.

Several weeks ago, Walking Spirit was retained to coordinate an advocacy event in Indianapolis to welcome the Caravan for Disability Freedom & Justice to Indiana.  The Caravan has been traveling the country since April promoting the Latonya Reeves Freedom Act (H.R. 2708 & S. 1193) and nonpartisan voter registration.  This legislation, when passed will expand the civil rights of all American citizens by enshrining the Right of People with Disabilities to live independently in the community of their choice with Long Term Services & Supports as civil rights law.  It has national bi-partisan support in both the United States House of Representatives & Senate, and its passage is part of the legislative agenda presented at the recent National Council on Independent Living conference.  It was an honor to coordinate the Rally for Disability Freedom & Justice.    

With no budget, minimal funding, limited time, and a small group of volunteers we held the rally on Wednesday, August 14th on the lawn in front of the Indiana State Museum.  To the back drop of the patriotic Caravan decorated in Tom Olin’s historical disability rights photography, a food truck, and Disability Rights themed music an ADA & Disability Rights Info booth provided by ADA IN and a non-partisan Voter Registration booth provided by Indiana Disability Rights, a representative from Congressman Andre Carson’s office and comments from Congressman Frank J. Mrvan, who are both Co-Sponsors of H.R. 2708, the focal point of the rally was the stories of Hoosiers with Disabilities.  Four families shared their stories of living independent lives with diverse disabilities; several are facing their independence being threatened by Indiana’s recent Medicaid Waiver Redesign.  All members of Indiana’s delegation to the United States’ 118th Congress were invited to attend, and to close the rally I read aloud from a document for them to sign their commitment to Co-Sponsor the bills.  None, including our Gubernatorial candidate Senator Mike Braun, were present nor did any representatives from their office identify themselves.  

The document stated: Whereas People with Disabilities are estimated to represent over 20% of Indiana’s population. Whereas People with Disabilities are a cross-demographic culture that is growing exponentially due to conditions of aging, birth, and trauma.  Whereas People with Disabilities are innovative members of our communities who can live and function independently with Long Term Services & Supports.  Whereas most Hoosiers will experience some form of disability, whether their own or that of a loved one, we recognize the relevance of the Latonya Reeves Freedom Act (H.R. 2708 & S. 1193) as a necessary expansion of the Civil Rights that are vital to protect the independence of all Hoosiers.  Joining Indiana’s current Co-Sponsors, 1st District Representative Frank J. Mrvan and 7th District Representative André Carson, to show support for all Hoosiers through the national passage of this legislation; as of Wednesday, August 14th, 2024, we the undersigned members of Indiana’s delegation to the United States’ 118th Congress commit to Co-Sponsor the Latonya Reeves Freedom Act of 2023.

While I understand that this was planned on very short notice, despite over two weeks of statewide outreach, Indiana’s disability community did not show up to support this advocacy event.  (I regularly hear comments among the Disability Community that “Indiana has to do better”…this is one example of what we can do better, gather our people for advocacy events by ensuring they are aware of the opportunity and able to remove any barriers they may encounter). Though poorly attended, the Rally for Disability Freedom & Justice successfully caught the attention of several media outlets.  (Links to some of their press coverage are included at the end of this post).  That Thursday morning I sent the unsigned document to each of Indiana’s US Legislators who have not Co-Sponsored the Latonya Reeves Freedom Act, asking that they Co-Sponsor the bill.  (FYI, Congressmen Baird & Yakym’s offices have both replied that they were forwarding my email to their Legislative Aids, though it certainly will get more attention if they hear from others with the same request).  In my email to Senator Braun, I also mentioned his candidacy for Governor and what his leadership in getting his fellow members to Co-Sponsor this legislation would show Indiana’s Disability Community.  The document was also sent to the media. 

This is a non-partisan issue that deserves bi-partisan support and Hoosiers with Disabilities should demand unanimous support from Indiana.  We should demand that the man who wants to be our next Governor lead the way.  The house bill currently has enough Co-Sponsors to warrant a hearing in the House Ways & Means Committee and already has enough Co-Sponsors to pass a full House floor vote.  Through a process called “Public Discharge” H.R. 2708 can bypass the House Ways & Means Committee and move straight to a full House floor vote which would then pass it to the Senate, where it has 25 Co-Sponsors…and when Vice-President Harris was a Senator she Co-Sponsored the Disability Integration Act which was a previous version of this legislation.  With enough of an advocacy effort the Latonya Reeves Freedom Act could be signed into law by President Biden before the election.  

The bill still needs more support to get a Public Discharge including our other 9 Indiana US Legislators.  For the Public Discharge to happen there are also 10 Democrats and 5 Republicans from outside of Indiana who need to support H.R. 2708. I’ve been told that until our Rally for Disability Freedom & Justice there had been no advocacy effort in Indiana to support this legislation beyond our two current Co-Sponsors.  That said, please do not feel any obligation, but if you are interested in reaching out to our Legislators to ask that they Co-Sponsor the bills (H.R. 2708 & S. 1193) their contact info is below.  I’ve also listed contact info for the 10 Democratic and 5 Republican Representatives who need to support it for a Public Discharge; you are welcome and encouraged to reach out to them.  If you want to contact the House Ways & Means Committee Leadership to demand they call a hearing for H.R. 2708, their contact info is included as well.

If you are so inclined, I ask that you share this advocacy opportunity with your community and that you pick up the phone and write an email yourselves.  I recommend calling their offices and asking for a good email address to send a request for the Legislator to Co-Sponsor a current piece of legislation.  Tell them what legislation you would like for them to co-sponsor and why. If they ask if you are a constituent, I suggest telling them that you are a Hoosier who needs their support on a non-partisan issue for all their constituents with disabilities.  Feel free to share this advocacy opportunity with your own spheres of influence and ask for their support with action through calls & emails to these Senators and Representatives of Indiana and beyond.  Please also look for and share social media posts related to passage of the Latonya Reeves Freedom Act. 

Indiana US Legislators:

            Senator Mike Braun: (317) 822-8240    (202) 224-4814   email: [email protected];[email protected]

            Senator Todd Young: (317) 226-6700    (202) 224-5623                     email: [email protected]

            2nd Dist. Representative Rudy Yakym: (574) 204-2645   (574) 223-4373   (202) 225-3915             email:[email protected]

            3rd Dist. Representative Jim Banks: (260) 702-4750   (202) 225-4436                       email: [email protected]

            4th Dist. Representative Jim Baird: (317) 563-5567   (202) 225-5037                        email: [email protected]

            5th Dist. Representative Victoria Spartz: (317) 848-0201   (765) 639-0671   (202) 225-2276            email: [email protected]

            6th Dist. Representative Greg Pence: (812) 447-3647   (765) 660-1083   (812) 799-5230    (202) 225-3021    email: [email protected]

            8th Dist. Representative Larry Bucshon: (812) 465-6484   (812) 232-0523   (202) 225-4636            email: [email protected]

            9th Dist. Representative Erin Houchin: (812) 288-3999   (202) 225-5315                  email: [email protected]

Democratic Leadership:  (a * indicates they previously Co-Sponsored the Disability Integration Act, the prior version of H.R. 2708)

            VA 8th Dist. Representative Donald S. Beyer Jr. (202) 225-4376                email: https://beyer.house.gov/contact/

            *MA 5th Dist. Representative Katherine M. Clark* (202) 225-2836            email: https://katherineclark.house.gov/email-me

            *CA 16th Dist. Representative Anna G. Eshoo* (202) 225-8104            email: https://eshoo.house.gov/address_authentication?form=/contact/email-me

            MD 5th Dist. Representative Steny H. Hoyer  (202) 225-4131              email: https://hoyer.house.gov/address_authentication?form=/help/contact

            *NY 8th Dist. Representative Hakeem S. Jeffries* (202) 225-5936            email: https://jeffries.house.gov/contact/email-me/

            NJ 6th Dist. Representative Frank J. Pallone  (202) 225-4671              email: https://palloneforms.house.gov/contact/

            CA 11th Dist. Representative Nancy Pelosi  (202) 225-4965    email: https://pelosi.house.gov/address_authentication?form=/contact/email-me

            WA 3rd Dist. Representative Marie Gluesenkamp Perez (202) 225-3536               email: https://gluesenkampperez.house.gov/contact

            *WA 8th Dist. Representative Kim Schrier* (202) 225-7761            email: https://schrier.house.gov/contact

            *VA 3rd Dist. Representative Robert C. “Bobby” Scott* (202) 225-8351            email: https://bobbyscott.house.gov/address_authentication?form=/contact

Republican Leadership:

            Speaker of the House Rep. Mike Johnson (202) 225-2777             email: https://mikejohnson.house.gov/contact/

House Majority Leader Rep. Steve Scalise (202) 225-3015             email: https://scaliseforms.house.gov/contact/

Majority Whip Rep. Tom Emmer (202) 225-2331             email: https://emmer.house.gov/contact

Republican Conference Chairman Rep. Elise Stefanik (202) 225-4611             email: https://stefanik.house.gov/email-me

Republican Policy Committee Chairman Rep. Gary Palmer (202) 225-4921           email: https://palmer.house.gov/address_authentication?form=/contact

US House of Representatives Ways & Means Committee:

Chairman: Jason Smith (MO): (202) 225-4404             email: https://jasonsmith.house.gov/contact/

Ranking Member: Richard Neal (MA): (202) 225-5601              email: https://neal.house.gov/contact/

Media Coverage:

Hoosiers with disabilities welcome caravan supporting federal legislation
Hoosiers with disabilities welcome caravan supporting federal legislationDiscussions centered around bipartisan federal legislation called the LaTonya Reeves Freedom Act that would help people with disabilities.www.wishtv.com
Indy Rally Supports People With Disabilities, Proposed Legislation

https://www.instagram.com/thearcin/p/C-dPI7ATQXs

https://www.wthr.com/video/news/local/advocates-urge-disabled-community-to-vote/531-e76ada15-a43e-4437-88f7-238b2a246848

Advocates urge disabled community to voteThe Caravan for Disability and Justice 2024 visited Wednesday.www.wthr.com

https://downtownindy.org/do/rally-for-disability-freedom-and-justice

Talking with a New Friend

A man with prosthetic legs wearing a brown kilt and a green shirt stand with a woman wearing bluejeans and a black shirt in a vendor booth for Walking Spirit, LLC.

At the end of May Walking Spirit took a leap of faith, of sorts, by attending the annual National Restaurant Association Show in Chicago. In the hopes of finding new clients, and opening minds to the concept of Accessible DEI & Belonging as a training focus in the Hospitality Industry to improve community access for everyone. While there I made some new friends, one of whom reached out to me the day after the conference to see if I would be interested in doing a pod-cast episode with him. We talk about how Walking Spirit came to be. The story is deeply connected to the origin of my disabilities, and as July is Disability Pride Month, I felt now would be a perfect time to share. I hope you enjoy listening to the dm&a Podcast “Eavesdropping on John Herzog: Jeremy Warriner: The Walking Spirit – Using Life Experiences to Increase Accessibility for Customers”…

National Limb Loss & Limb Difference Awareness Month

Jeremy Warriner, a bi-lateral above knee amputee, sits in a hammock surrounded by his assistive technology and speaks about the experience of living with limb loss and limb difference. He shares his advice for supports in defining and living a successful independent life with disabilities.

Disabilities & Conditions of Aging Network, March ’23

On Thursday, March 23rd, 2023, the Disabilities &Conditions of Aging Network, hosted by Advocates Personal Care, met virtually to discuss events impacting the Disability community in central Indiana, throughout the State, and beyond. To focus in on a conversation that began during the February meeting, we invited Karly Sciortino-Poulter from the ARC of Indiana to help us better understand the unwinding of the Public Health Emergency and the impact that will have on people who are utilizing Medicaid and Medicaid Waiver services to support and maintain their independence. Of particular interest was the topic of paid parental caregiving for minors with disabilities, and its future as a feature of Attendant Care through the Aged & Disabled Medicaid Waiver and similar services on other Waivers.

Watch the recording of the March session here:

The April session of the Disabilities & Conditions of Aging Network, hosted by Advocates Personal Care, will be held over zoom at 10am on Thursday, April 27th, 2023! While we do try to give everyone a chance to introduce themselves and their organizations, if you would like specific time on the April agenda to share updates about your organization’s activities, concerns, or celebrations, please email Advocates Personal Care’s Outreach Consultant at [email protected].

The Disabilities & Conditions of Aging Network is open to anyone who is interested in, or actively supports the community of People with Disabilities. If you would like to attend the April meeting, please save the link below, or comeback here on 4/27 to utilize the meeting info posted here and click to join!

Topic: Disabilities & Conditions of Aging Network

Date & Time: Thursday, Apr 27, 2023, 10:00 AM Indiana (East)

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Meeting ID: 811 2809 9345

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Strength of the Body, Knowledge of the Mind, & Honesty of the Heart – Adaptive Martial Arts for People with Disabilities

The story below is the original, unedited version of the article that was published in the Indiana Disability Justice Hub earlier this month. That article, and many others focused on preventing violence against people with disabilities can be found at: Disability Justice and Violence Prevention Resource Hub – Created by Survivors of Violence with Disabilities for People with Disabilities & Our Allies (indisabilityjustice.org)

When I was a year old my parents moved into a house in an economically depressed neighborhood.  We lived two blocks away from the public elementary school that my older sister and I would attend.  I walked to school every day with my big sister until she moved on to middle school, as I was entering 5th grade.  There were lots of other kids from our neighborhood who walked to school then too.  

I was regularly picked on for being a scrawny white boy with coppery red hair and glasses.  I had the quick temper to match the red hair.  I also had a habit of sticking my nose in where it didn’t belong.  When the bullies were picking on other kids, I tended to put myself in the middle…especially if their victim was a girl.  This led to a lot of fights…several that I started…none that I could finish.

I got good at throwing the first punch and running as fast as I could.  Afterall, home base was only two blocks away from the school yard.  I was fast, but I wasn’t always the fastest and would occasionally come home with scrapes and bruises, especially at the beginning of my 5th grade year.  Eventually, my parents had enough of it.

The way I remember it, the day after I’d come home with a particularly large number of bruises from several bullies who had caught up with me about a half block away from home, my dad took me to see Poltergeist in the movie theatre.  It was a special treat to help me feel better…though on the way home I got suspicious when my dad drove past our normal turn.  Dad pulled into a parking lot outside of a small building near 39th and Keystone.  We went inside and were greeted by a large stern looking man with sandy blond hair and a short beard, wearing what looked like white pajamas with a black fabric belt knotted at his waist.  No one else appeared to be around.

The man asked me to have a seat while he and my dad “discussed business”.  He ushered my dad into his office, and I sat on a small row of chairs near the entrance.  There were plaques and pictures on the dark brown walls showing the man in fights, holding awards, or with his arm around important looking people.  The small waiting area that I was sitting in opened onto a large well-lit room with a green mat that covered the floor.  At the far end of the room there was a pegboard on the wall with strange looking weapons hanging from it…weapons you might see in a Ninja movie.  I had no idea what was going on, but I had a terrible feeling that my dad was selling me.

After what seemed like an eternity, the man opened his office and asked me to come inside.  I sat down next to my dad and the man took his chair on the other side of a huge desk.  He looked at me and said, “Your dad tells me you’ve been getting into fights.”  I nodded.  “Your parents would like for me to teach you how to defend yourself, are you committed to learning?”

My first reaction was relief that I wasn’t getting sold, followed by shock that my parents wanted me to learn Karate.  I smiled as I began to imagine finishing fights instead of running…

“Yes Sir,” I replied.

He smiled back at me and stuck his open hand out across the desk for me to shake.  As his giant hand enveloped mine in a firm squeeze, he smiled and said, “You will call me Sensei”.  (Which means teacher).

While I did learn to defend myself, what I really learned was how to control my temper and not get into fights.  Since that day I have only needed to use Karate against others on five occasions…three times to defend myself or others, once to stop a fight before it ever began, and once in college to take the car keys away from a friend who’d had too much to drink.  For seven years, on most days after school and throughout the summers, I would go to the Dojo (Karate School) and train.  Somehow, I also found time for trombone practice, marching band, jazz band, show choir, and time with my friends, but from 5th grade through my senior year of high school I spent a lot of time on that mat practicing the martial art of Shorei-Goju Ryu.  I earned my Black-Belt before I was 16.  (Many people believe this is the highest rank, but it’s really the middle, representing the point at which you begin to know something).

I was at the Dojo almost daily, reciting a creed to focus on strength of the body, knowledge of the mind, and honesty of the heart and practicing physical conditioning, style, form, and self-defense until inevitably, life took a major step forward.  After I moved an hour away to attend college, with no car on campus, I continued practicing on my own by running katas (choreographed martial arts forms to practice and keep the body, mind, and spirit healthy) in a horticulture garden near my dorm, but eventually college life became the priority and my focus on karate diminished.  I stopped practicing.  My connection with my master Sensei and the other teachers at his school waned until life took that next big step forward, a career that took me out of state.

A decade later, my belts were nice memorabilia of my youth to decorate my walls.  I still knew how to defend myself, but my memory of each kata was buried underneath a decade of hotel management work.  Back home, the Dojo moved, expanded, and eventually shut down.  Life took the next very unexpected leap.

During my hour-long commute home from work, over eighteen years ago, a sixteen-year-old driver turned left in front of me on a dark county road.  I wound up trapped in a crumpled and burning Jeep Wrangler next to a cornfield.  The other driver had a few minor injuries, and was in shock, but was coherent enough to call 911.  While there were no witnesses, amazing people stopped and risked their lives to pull me from the burning wreckage before EMS could arrive.  Six weeks later I awoke from a medically induced coma to learn that, in addition to other injuries that would ultimately heal, both of my legs had been amputated from above each knee.

I remember those early days in the burn unit, thinking about my youth and all of the effort that had gone in to learning Shorei-Goju Ryu.  Something valuable that I had let slip away as my career took prominence in my adult life, but something I had always thought I would return to one day.  This was now gone…I told myself…this future option had been taken with my legs and all of that effort to learn Karate in my youth felt wasted.  Then I began outpatient Physical Therapy.

As I began learning to walk on prosthetics, my Physical Therapist would regularly comment on my overall body awareness and balance (which I didn’t feel was great, but she was impressed).  She attributed this to my martial arts background, and I really couldn’t argue.  The day that she worked with me on how to fall safely…which is tremendously important for a person walking on two above knee prosthetics with crutches…she was stunned when I just let go of both crutches and fell forward, landing with my forearms taking most of the impact and protecting my face and chest at the same time.  It was a bittersweet benefit, but it gave a little value back to that time of my life…relieved a little of the loss.  There were other benefits too. 

Adapting to life as a person with Disabilities is hard…it’s the hardest thing that I have ever had to do and, aside from the physical actions of punching and kicking, a lot of what I learned in Karate was about self-discipline, motivation, determination, and resiliency which absolutely helped me adjust to living life using a wheelchair, or prosthetics with crutches when needed or wanted.  I was using what I had learned to reach a black-belt rank in Shorei-Goju Ryu, every day now, to deal with the emotional and physical trauma of life with a disability. 

That said, I wasn’t practicing karate, I was just subconsciously drawing on its lessons to reinforce my efforts to adapt to life as a bi-lateral above knee amputee.  I had lost sight of the healthy body, mind, and spirit aspect of karate and allowed my incorrect perception of my body as “broken” to prevent me from being able to wrap my mind around the concept of adapting karate to my disability…and that oppressed my spirit.

Over the course of the first decade of my experience as a Person with Disabilities I led a fairly sedentary life.  Thinking that the physical effort of moving my body from couch to wheelchair to toilet or bed or car or even the floor, and the effort that it takes to walk regularly with prosthetics (400% more energy than the average human expends to ambulate) …none of which seems sedentary…was enough physical exercise to stay healthy.  I was wrong.  I developed Type Two Diabetes and severe Sleep Apnea as a direct result of not exercising or maintaining a healthy diet.  I began swimming regularly, which helps, but I still require medicine to keep the Diabetes under control and a CPAP to combat the severe Sleep Apnea. 

After acquiring my disabilities, I eventually noticed my old temper coming back, which I initially ignored as an indicator of my spiritual and emotional health.  Anxiety and depression were presenting my neurodiversity, which needed to be acknowledged.  Though I have adapted my home and learned to utilize accessible assistive technology and public accommodations to stay engaged in society, things that wouldn’t have bothered me at all before I lost my legs were now tremendously aggravating, and minor inconveniences began to feel like major obstacles.  Add the phantom pains to the mix…random nerve pain that varies in frequency and intensity to the extremes, radiating from the parts of my body that have now been gone for 18 years…and my pleasant demeanor is more often a façade than reality.

My confidence still tends to put me in questionable situations, as I tend to forget that I have a disability.  One night, about three years after I had lost my legs, I found myself at a gas station in a questionable part of town at 2am.  Prior to losing my legs, I would not have been concerned about the time of night or neighborhood and didn’t give it a second thought as I pulled into the gas station that night. 

I was wearing an advanced pair of prosthetics, standing by my car pumping gas.  No one else appeared to be around.  A dirty looking man in a denim jacket with his hands concealed in his pockets walked out from behind the gas station and headed straight towards me.  The hose was blocking my path to get back in my car and I only had one of my crutches with me.  Though it had been decades since I had practiced Karate, I began thinking through ways that I could quickly knock this person to the ground and then get the weight of my prosthetics on him before he could draw a weapon, maybe use my crutch to restrain him if needed. 

As he drew near, his right hand came out of his pocket and opened, empty, as he thrust it toward me while saying “I’m a Physical Therapist and it’s amazing to see you out pumping your own gas!  I’d really like to shake your hand!”  I shook his hand, shared a brief conversation with him about my legs and independence, then we went our separate ways.  As I drove away, I realized how very vulnerable I had felt and been.  This experience changed the way I approached many aspects of life, especially travel and entertainment in unfamiliar areas, after that night.  

Years later, as a result of COVID, I began doing outreach work for a local non-profit during that time when most of us were trying to stay as far from each other as possible.  Through a random string of events this led me to virtually assist a young woman with Down Syndrome, who lived in another state, with her senior project on Martial Arts.  She wanted to do videos with me in Indiana, taking her through a short class demonstrating karate from the wheelchair (punches and blocks), while she would also demonstrate the kicks, stances, and other movements from her school in Georgia.  She wanted us to wear a traditional karate uniform called a “gi”. 

For the first time in almost 30 years, I pulled out my gi and tried to put it on…I don’t know what possessed me to think it might fit.  To add insult to injury, I also apparently had to learn from experience that my black-belt (last worn at age 18) would no longer fit around my waist either.  I ordered a gi and belt that would fit and did several videos with the young woman demonstrating basic karate techniques.  She graduated, and after helping her with this project, I found myself asking the question “how do I really modify this for my 48-year-old bi-lateral above knee amputee body?”

I knew I would need help, someone who could work with me on the katas that I had long since forgotten, as these would provide a framework for adapting, modifying, and once again practicing the martial art style of Shorei-Goju Ryu.  With a bit of detective work, I was able to connect with the Sensei from our dojo who had worked most often with me during the seven years of my life that I spent there.  He was still in the area and happy to reconnect.

We began with the basics, both in the wheelchair and standing on my prosthetic legs with balance support from forearm crutches, to get a sense of my movement.  In the wheelchair I can comfortably work on punches and blocks and focus on form, but there are no kicks.  When practicing a kata that includes kicks, I will substitute a punch or a block for a kick where appropriate.  When using my prosthetics, I perform the kicks to the best of my ability, allowing for the restrictions caused by the weight and design of my prosthetics, rather than being frustrated by them.  Some of the stances and transitions also need to be modified to account for my mobility.  The forearm crutches can encumber my punches and blocks but can also be incorporated as weapons for punching and blocking, when necessary, which minimizes that encumbrance.

For the past two and a half years my Sensei has been helping me draw each kata that I learned in my youth out of my memory…it’s like walking through a dream…and then works with me to modify the kata to accommodate my disability while staying true to the style and form.  We do this both standing and sitting to adapt for either situation.  We do not only work on the choreographed katas, but also occasionally work on self-defense, wristlocks, armlocks, etc.  We’ve even begun working on weapons training with a modified (shortened) Bo staff and a pair of Sais…which I only use in the wheelchair, as my balance on prosthetics will not allow for safe manipulation of the Bo Staff or Sai.

Re-learning Shorei-Goju Ryu as an adult has been a mind opening spiritual experience as well as a physical one.  I have found myself more in tune with my own body and understand aspects of the martial arts in ways that I could never embrace as a teenager.  My balance and endurance have improved dramatically, though I do still need the crutches for safety and mobility…and cannot do any wide arm movements above my head…my confidence in movement continues to grow.  My flexibility, while not wonderful, is also improving gradually.  Regarding my emotional and spiritual health, I find that my “zen” is returning.  I am once more able to keep my temper under control and do not allow it to rise when agitated, allowing me to keep a clearer head when I do find myself in tense situations. 

Re-focusing some of my time and effort on martial arts has provided tremendous benefits to my physical, mental, and spiritual health.  Adapting Martial Arts has been a reminder to me to look at every challenge with the question “how can I…?” instead of the statement “I can’t…ever again”.  It is also a reminder to accept what is “different” and redefine the goals if needed.  We recognize that I have a disability and will not be able to get away from a fight easily, so we focus on ways to defend myself while quickly mitigating an attacker.   My approach to self-defense is different based upon whether I have my prosthetics on, am standing or sitting, have my crutches in hand or not, using the wheelchair without my prosthetics, etc.  These conditions are unique to me and so my practice of martial arts is also unique. 

These are important aspects that, when a person with a disability has thought them through, can dramatically impact their awareness of their surroundings and comfort level in society.  Will I be able to defend myself or my loved ones if a Marvel movie fight scene spontaneously erupts around me?  Doubtful, but I do have an unexpected edge if ever attacked, and my restored “zen” is a key tool to avoiding such situations in the first place.  Most importantly, by practicing and adapting Shorei-Goju Ryu, I have redefined my perception of a healthy body, mind, and spirit in a way that is inclusive of my disabilities, and I have an adaptive avenue to further develop those aspects of life. 

I would strongly encourage any person with a disability to explore adaptive martial arts.  There are benefits for anyone, regardless of the nature of their disabilities.  People with intellectual and developmental disabilities will find the routine of adaptive martial arts to be accessible physical exercise that also helps build confidence, independence, and improves personal safety.  People who experience neurodiversity can find that practicing martial arts will provide focus and additional coping mechanisms.  Someone who has complete paralysis can still learn the katas and run them in a mental space to exercise the mind and focus the spirit. 

Martial Arts can be adapted for any person with any disability and modified as the individual’s skills progress.  The benefits begin with accepting your entire self and redefining your own concepts of a healthy body, mind, and spirit in a way that incorporates your disabilities as part of your healthy state, not something working against it.  Learning martial arts can help you face life with adaptability and resiliency, both of which are vital aspects of the disability experience.  Demonstrations can be seen on the Adaptive Karate page at https://www.walkingspirit.org.

National Disability Employment Awareness…why a month?

We’re fast approaching the 18th anniversary of my survival day; the day I lost both of my legs to severe burns sustained in a car accident during my commute home from work but did not die. October 22nd marks that life altering event for me. It’s been 18 years, and the irony that this happened during National Disability Employment Awareness Month is just hitting me.

Including my college education, I had spent over a decade of my life focused on a career in full-service hotel management. I had experience working for multiple management firms exceeding the standards set by the dominant hotel brands in the hospitality industry. I had the training, and facilitated much of the training, provided by these brands and management firms. I knew March was National Disability Awareness month, but with all of that time engaged with national and multi-national employers and their various human resources offices, I had not heard of National Disability Employment Awareness Month…or, if I had, it had not been given any attention or significance.

To put this into perspective, I did not become aware of National Disability Employment Awareness Month until after I became a person with a disability who was trying to adapt to maintain employment. That’s not really the way it’s supposed to work, though it is not surprising. People with disabilities often get overlooked and represent a largely underutilized, though often highly effective part of the workforce. Despite national efforts to promote employment of people with disabilities dating all the way back to 1945, when Congress passed a law establishing the first week of October as “National Employ the Physically Handicapped Week” which also requested an annual Presidential proclamation. (It’s interesting to note that this minimal social dawning of awareness came so many decades before the Americans with Disabilities Act protected our civil rights to employment).

Understanding that people with disabilities have always been a diverse minority within our culture, one that actually links all other cultures together, it’s staggering how lack of innovation has been a barrier to access, inclusion, equity, and belonging for diverse people with disabilities throughout our history. Employment of People with Disabilities leads to innovation in the way we find different ways to achieve the same goal by asking the question “how can a person with _____ disability achieve the primary function of ______ job?” The more you think outside of the box, the more you promote innovation, which ultimately enhances productivity and improves the bottom line. Employing people with disabilities is a motivator for this process.

Apparently in 1945, someone in the US Congress started to get it. The fact that we got a week at that point, along with an annual Presidential proclamation, was a win. It didn’t stop there. In 1947 President Truman established a committee responsible for coordinating and publicizing events to promote and celebrate the week. In 1949 Congress appropriated funding for the committee and in 1954 they were directed to work with state and local authorities to promote job opportunities for the “physically handicapped”. In 1955 they became a permanent organization.

Recognizing that people with intellectual and developmental disabilities could, and should, be able to work too, just like people with physical disabilities, in 1962 President Kennedy renamed the committee the “President’s Committee on Employment of the Handicapped”. This executive order also significantly expanded their charge by directing them to develop employment opportunities for both the “physically and the mentally handicapped”. Congress then redesignated the first week of October as “National Employ the Handicapped Week”.

Though it was the social term of choice, the term “handicapped” has always had a negative connotation and represents people with disabilities as a social burden. People with Disabilities have worked diligently to remove this word as an identifier for our minority. Perhaps showing sensitivity to this, in 1988 President Reagan issued an executive order renaming and reorganizing the committee into the “President’s Committee on Employment of People with Disabilities”. Congress then expanded and renamed “National Employ the Handicapped Week” to make the entire month of October “National Disability Employment Awareness Month”.

Before, during, and after the civil rights movement in the United States, people with disabilities have been fighting for their right to employment and inclusion in society. We had a week from 1945 to 1988, then we got a month, then in 1990 we got the five titles of the ADA starting with Title 1 which protects people with disabilities from discrimination based on their disability in regard to all aspects of employment. Yet, when I was a student in the mid ’90’s earning my bachelor’s in Consumer and Family Sciences with an emphasis on Hospitality and Tourism Management, the ADA was barely touched on during my Hospitality Law class.

Throughout my career in the hospitality industry, there was minimal focus placed on employment of people with disabilities. No exploration of the benefits that come from hiring people with disabilities, like innovation in the work environment and reduced turnover. Little to no disability awareness training for management or line level staff…despite the fact that disabilities affect over a quarter of the world’s population, which absolutely impacts the service experience and interaction with employees and customers alike. (It’s important to note that the population of people with disabilities is the most diverse minority in the world, a minority that is exponentially growing due to both trauma and natural conditions of aging).

On rare occasions the properties that I would manage might contract with a local service provider who helped people with disabilities find work. More often than not this would be a group home or a day center for people with intellectual and developmental disabilities. They would bring a group of people with disabilities to work for our housekeeping and culinary departments, usually helping with public area cleanliness in the bathrooms, hallways, lobbies, washing dishes, mopping floors, and/or helping in the laundry. These groups would come with a job coach from their organization who was there to support the employee.

Rarely did we see people with physical disabilities through these agencies. When a person with a physical disability did apply for a job, we would interview them, but I don’t remember any training about what we could or could not ask in the interview. I never received any training on how to ensure that we were not discriminating against candidates with disabilities when comparing them against other candidates without visible or disclosed disabilities. If we had any connections to resources to help us with employing people with disabilities and modifying jobs and work environments as needed, I was not aware of them.

Before I became a person with a disability, I never stopped to consider the training that should have happened when we contracted with disability employment and support organizations. Any time the employee had an issue, the department supervisor would look to the job coach to handle it. Instead of communicating with the employee, the hotel staff preferred to work through the job coach, and more often than not, the job coach allowed it. This did nothing to help the employment relationship between the actual employee and their supervisor.

We employed people with disabilities to fill the jobs we had difficulty filling but didn’t want to understand their needs. Not once did I ever receive any training to understand how Autism, Down Syndrome, Cerebral Palsy, ADHD, or any other disability might affect the way an employee receives instruction or needs to modify their process to achieve the primary function of the job. How disabilities might impact guest interaction, whether on the part of the employee, the consumer, or both was never a consideration. Our corporate human resources offices encouraged us to hire people with disabilities because of the tax break the property would receive, not because it was the right thing to do or the best way to fill vital jobs, reduce turnover, and promote innovation. Now, mind you, this was my experience between 1993 and 2008, when I left the hospitality industry to pursue disability advocacy and public speaking. One would hope that there has been improvement over almost two decades, but I’m led to believe that it has been minimal compared to other concepts of diversity.

Since that time Diversity, Equity, and Inclusion have become the major buzz words in the Human Resources realm of corporate business and culture. Diversity hires are a win, Equitable treatment and pay are major selling points, and Inclusion in the business decision making process builds a sense of Belonging for everyone…which has become the newest buzzword added to “DEI” or “DEIB”. Except, once again, disability tends to get overlooked because “it’s a part of diversity, right?”

Disability is unique, because while disabilities are a part of diversity, people with disabilities can’t be included in your diversity unless you are Accessible first. Employment of people with disabilities as a constant, vital, equitable, and inclusive part of your team helps to ensure that you are actually able to achieve those DEIB goals by adding the “A” to truly create Accessible Diversity, Equity, Inclusion, and Belonging for employees and consumers of your operation.

Why does National Disability Employment Awareness get a month? Because people with disabilities are vital to the future life of all operations that function in the public sector as both employees and consumers. People with disabilities are also vital employees to have in state, local, and federal government, as these are often the people whom those services support. Why does National Disability Employment Awareness get a month? A better question is why doesn’t National Disability Employment Awareness get every month?

(Image Description: Jeremy Warriner, a bi-lateral above knee amputee stands on two prosthetic legs with the aid of two crutches attached to his forearms, which are crossed in front of him. He has long reddish-brown hair falling loose over his shoulders. He is wearing a black leather jacket, a black t-shirt with a flame image, and denim shorts. He has a short-trimmed red beard and is smiling at an older gentleman standing to his right. They are standing in front of a pair of glass doors with windows surrounding them letting in bright daylight. The older gentleman is wearing gray pants, a black IU Health Lifeline jacket, aviator sunglasses, and a gray baseball cap. He is smiling and reaching out to Jeremy with his left arm, patting him on the back. The picture is taken over the left shoulder of a dark-haired woman in the foreground).

Why Disabled People Struggle to Book Hotels

This Washington Post Article, by Disability Reporter Amanda Morris, explores the challenges faced by People with Disabilities when attempting to travel and the obstacles to holding the Hospitality Industry accountable to the Americans with Disabilities Act.  The US Supreme Court considers a case that could impact the rights of all People with Disabilities to enforce the ADA.  Walking Spirit’s founder, Jeremy Warriner, is quoted as a person with a disability with a unique perspective from an education and  career in the Hospitality Industry.

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Delivery Day (Phase 3 Actual)

Due to a trick of timing, I actually received the new legs about 3 days before I wrote my previous blog post “The Trial (Phase 3 Dawning)”. As I alluded to in that post, life has been exceptionally busy, and I am focusing most of my effort on growing Walking Spirit and better defining and promoting our services. This hasn’t allowed for much writing time, even to document the process of getting a new pair of next-gen legs. As a result, the first time that I had to sit down and write a blogpost about the Trial of the Phase 3 Power Knees which was an experience I felt it important to share, was a few days after my family arrived in South Haven Michigan for a week of vacation.

Sitting on the screened in deck at our almost accessible vacation rental a few blocks away from the beach, I was finally able to put my thoughts together to share that experience. As I wrote about the trail period for me to test the knees, which had taken place a month prior, my new Phase 3 Power Knees were leaning in the corner of our room waiting for me to don them for dinner. Of course, as I wrote the blog post my wife was waiting for me to put on a swimsuit and head to the almost accessible beach, so that would need to come first.

Less than a week before we left to go to South Haven, I was sitting at home anticipating the day’s appointment to get my new sockets made. This is part of the process of getting new legs. If you’re lucky you only have to get new sockets every 5-8 years, on the same cycle as your prosthetics, but that requires maintaining your weight within a 10lb range, so the fit doesn’t change drastically, which can lead to pain and difficulty walking. The process of making new sockets can take weeks. If done right, the fastest it’s taken in the last 17 years has been a two-week process of casting, fitting temporary “check sockets”, and making the final carbon fiber sockets. Also, the sockets come very high up on the outside of the hip, flare out around the top, and traditional mode of thought has been that for proper suspension they have to provide “ischial containment”, which means that they come all the way up to the butt-bone. They are uncomfortable and restrict motion. Recent changes in socket technology have led Ossur, the manufacturer of my Power Knees, to develop a proprietary sub-ischial socket called a “Direct Socket”.

Instead of using carbon-fiber, the direct socket combines fiberglass and epoxy. The socket does not come as high up the hip and has a flexible rubber brim at the top instead of flared plastic. Arguably the best part, it’s molded directly onto your residual limb in the office and is ready that day! I had heard about these sockets and was interested in trying them out It was my hope that the new design would provide enhanced comfort and mobility over the traditional sockets. Knowing that my Prosthetist is very traditional, I risked asking for the opportunity to try the sub-ischial direct sockets and was surprised when he agreed.

Though we had been given approval for the new legs from my insurance company, I knew there were some supply chain issues holding things up…specifically the feet they wanted me to use. After a few weeks had passed from the Phase 3 trial, my Prosthetist reached out to schedule the Socket fitting. I was really looking forward to this aspect, and he had decided to move forward, whether or not we had the new legs yet. On the morning of the appointment, he called to let me know that “only one of the kits” had arrived to make the new sockets. Did I still want to come in to make one socket or wait until he could make both of them? Oh, and the new legs were in so, did I want to go ahead and get them and put them on the old sockets? (He didn’t want me walking on two different styles of sockets). I told him he’d buried the lead, and yes, I was still coming in! I was getting my new legs that day!!!

By the time I arrived, he’d “found enough parts” to make the second socket, so today was going to be the full delivery day! We had thought this was just a socket fitting, which was exciting in and of itself because of the new style, but coming home with the legs was going to be quite the surprise for the family. Irena was going to be disappointed that she wasn’t there for the appointment, as she is great for documenting these events! I was already planning to not have my legs on and send her out by the fire in back when she got home, then put them on and walk out to join her.

First, of course, came the process of making the new sockets. Where usually there are a whole bunch of measurements taken and then casting and possibly 3d images to make the mold that the socket will be made on, this was completely different. First a liner similar to the one I wear under the sockets was put on my leg, then thin membrane like liner was put over that, followed by a connection plate at the end for my legs and 6 layers of fiberglass, the one-way valve for the suction socket was put in place, then another thin membrane liner on top of everything. These layers were smoothed over my muscles and then strapped over my opposite shoulder to keep the materials as tight as possible. Then a tube of epoxy was connected and injected into the material between the two thin membranes. As the epoxy was injected, my prosthetist spread it out evenly around my residual leg. The epoxy was warm and hardened within about ten minutes. After the socket was hardened, they removed it from my leg and took it in back to clean, smooth, and polish. For two sockets it was about a four-and-a-half-hour process!

Once the sockets were finished, they were attached to the new knees, and I tried them on. They fit like gloves! The big test was going to be whether or not I could walk without the reinforcement to my left hip that the ischial containment sockets had provided. As a result of the burn trauma, abnormal bone had grown inside of my glute-mead, a muscle that I needed to walk. 16 years ago, one orthopedic surgeon would not operate on it, fearing that I would not be able to use a prosthetic…even though the bone was currently blocking my range of motion which was causing issues with my use of a prosthetic. A second orthopedic surgeon asked for x-rays and decided he could perform the surgery. Over a cup of abnormal bone was removed from my left hip. It’s never been an issue, but I was concerned there would be a weakness in my left hip without the rigid sidewall of the former socket. I took my first few steps and those concerns were gone, though the hip will give a little if I’m being lazy, it is plenty strong!

The next hour and a half was spent aligning the legs and the new feet. During the trial I experienced an issue with the right knee moving on its own in standing phase, just slightly, but enough to alter my stance. This made finding a “quiet standing” stance where I can balance without needing the crutches challenging, to say the least. We tracked it down to the position of my “ankle” being different on the feet we used at the trial from the position on my usual feet. The ones that I tested were shorter, with less spring to them. The spring on this new set of feet is taller and moves that ankle from the back part of the heel a little more forward and also higher above the foot, which seems to have alleviated the issue.

The unfortunate thing is that they also make me taller, possibly even taller than my last pair of legs. I haven’t been within 6 inches of my original height for 17 years! The trial feet got me close, but the energy return and stability provided by this set is worth it, I just have to find my balance point again. On delivery day we never quite got the alignment to that perfect “quiet standing” position, but we got it as close as we could. My prosthetist had given me 6 hours of his day and it was time to wrap up. After my third alignment I felt more confident, so we went with that set of adjustments. I took my legs off and my prosthetist and his partner went over every screw, applying locktight and securing them in their positions.

Then, when I went to stand up, I encountered my first issues. Not sure what happened, but when I leaned into the knees to get up, they didn’t respond. There was no lift. This was exceptionally confusing, almost like the sensation of something having been stolen. I tried again and there was a delay but the lift assist kicked in. I was up, and the team was clearly exhausted. They were ready to leave for the day, so I decided to chalk it up to my own dwindling endurance and not moving my body right to trigger the sit to stand mode properly. I took a few steps and realized the right leg was not turned on, which was odd because their power buttons flash bright green and I had looked at them before attempting to stand. In the process I had leaned against the frame of the exam plinth, so must have accidentally shut it off somehow.

We reactivated the leg and I said my goodbyes. I had no issues sitting down into the car. The drive home was comfortable, without an inner plastic socket digging into my belly. Irena called and asked how the fitting went. I told her “longer than expected, but really good!” I couldn’t stop raving about how comfortable the sockets were, but didn’t mention the legs. She was going to dinner with a group of friends, so I still had time to get home and get a fire going for the evening! Then she asked if they had said anything about when I would be getting the new legs. “We’ll talk about that at home” was all I could think of to say. After getting home, before getting out of the car, I took a picture of how much more flexibility the new socket design had restored for me!

When I got home, I was disappointed to discover that I was still having issues with sit-to-stand. For some reason I was having to lift my hips to get the function to trigger properly. Normally, it required a load of the toe while simultaneously moving the knees forward, but no lift…that sort of defeats the purpose of the lift assist. I went inside, took my legs off, and got the fire going for when Irena would get home. When she finally came in, I directed her toward the back yard and told her I would join her outside in a few minutes. She went out and I circled around to our bedroom, which has a door to the back yard. After getting my legs on, I walked out onto the deck off our bedroom and down the ramp toward our firepit area. She heard the tell-tale robotic motors of my knees and turned, stunned as she said, “are you walking?!”

I was a bit timid on that first walk outside, and part of that was the issue with the sit-to-stand affecting my confidence. I reached out to my Prosthetist, and he reached out to the local rep for the manufacturer, who had a tech meet us at the office the next morning. Come to find out, these knees (which were brand new and not the exact pair that I had tested) had not been told that I was a bi-lateral amputee, so each knee was looking for the physical support that it would get from someone with a sound leg on the opposite side. Due to a tech issue, that information had not come across when they downloaded the programming from my trial day a month prior. Once they activated the bi-lateral setting, the trigger point for the sit-to-stand function changed to only require a simple forward motion in each knee and they lift! With my previous set I typically was only able to trigger both knees about 40% of the time. Usually, the right knee would trigger, and the left knee would follow along. It’s an amazing sensation to consistently stand up with the full assistance of each knee!

Since then, my usage of my legs has increased. They truly are game changers! I’ve climbed steps instead of taking ramps…a straight line is once again the fastest way to get someplace…I’ve sat in the row above the accessible seats with my friends and family at the movies (because the accessible seats typically only allow room for two), and I’ve stood on my legs for 45 minutes rearranging collectibles around on the high selves on my office. As I use them in my adaptive karate sessions, my balance and range of motion is steadily improving. I don’t know if these will lead to “unassisted walking” (which just doesn’t seem safe to me) but I’m not closing the door.