The AHCA Would Put the Lives of Millions Like Me At Stake

Judge in position to bang a gavel, with a piece of paper and a stethoscope in front of him.

I am one of the millions of people across the country who have benefited from the Patient Protection and Affordable Care Act (ACA). I have significant medical costs as a result of living with a rare genetic neurometabolic disorder, a primary immunodeficiency disease, Postural Orthostatic Tachycardia Syndrome, and a genetic condition called Ehlers-Danlos Syndrome. My medical costs are significant; I take over a dozen medications, eat a specialized medical food, use a power assist wheelchair, and have visited with over 20 doctors in just the past three years.

I depend on accessible, equitable, and affordable medical care to live.

Prior to the passage of the ACA, I could be denied health coverage due to having pre-existing conditions or terminated from coverage due from reaching a lifetime limit despite doing everything in my life, as some legislators would say, “right.” I have a Master’s degree, work a full-time job, volunteer, follow all of the directions of my doctors, live a healthy lifestyle, and have professional experience in health policy that helps me make informed decisions about my health care and coverage.

The ACA allowed me to attend graduate school during the policy rollout and access medical care without filing for bankruptcy. Now, as a young adult, it ensures that I can afford the health care that allows me to work and contribute to my community. The ACA not only allows me to physically survive, but thrive while living with complex medical conditions.

Although the ACA has saved and changed the lives of millions of Americans, people across the political spectrum can agree that the bill is not the final answer to ensuring that every single U.S. resident has quality, affordable, and accessible health care. However, on Thursday, May 4, House Republicans approved the American Health Care Act (AHCA), which deceptively claims to improve the shortcomings of the ACA, but in reality will increase inequality in our healthcare system. In particular, the bill could have devastating consequences for the disabled and chronically ill communities. The bill would change the Medicaid funding structure and cut Medicaid spending, provide state waivers that could eliminate required coverage and deny or increase costs for people with pre-existing conditions, and impact tax credits for insurance premiums. Although many unknowns remain with the pending bill, I do know that it could leave me and countless others who have high medical costs either underinsured or uninsured.

I beg the Senate to vote NO on the AHCA. The AHCA would be a death sentence for disabled and chronically ill individuals. We are valuable. We contribute to our communities. We love our families and friends, and they love us. Without affordable, quality coverage, the lives we lead would be at stake.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Why Archer’s Challenge Misrepresents the Experience of Wheelchair Users

Side of a wheelchair, mainly the wheel, giving off a shadow of the wheelchair on the ground.

“As you saw, it’s a lot of coordination involved between moving the chair, pointing to maps and of course using the weather clicker,” Chikage Windler, chief meteorologist at CBS Austin, explains about her experience of using a wheelchair on the job. She participated in Archer’s Challenge, an initiative aimed at educating able-bodied people about barriers to accessibility for wheelchair-users by nominating participants to use a wheelchair for a day. Archer Hadley, a 20-year-old student with cerebral palsy, started the initiative in an effort to rally support and funds for installing automatic doors on his campus. If Windler’s main takeaway from the experience was the difficulty of maneuvering a chair while gesturing, then there must be a big gap between the intentions and outcomes of Archer’s Challenge. Both Archer’s Challenge and media reports of the initiative reinforce ableist, misinformed beliefs about disability.

Some disability advocates have positively received the challenge. The Mighty published an article about Archer’s Challenge that went viral and received high praise from many commenters. Positive replies in public and closed groups on social media focused on how the challenge fosters empathy and dialogue with able-bodied people. While I appreciate the intention of the challenge to encourage able-bodied people to better recognize barriers to access, as a wheelchair-user, I am outraged that a major disability platform did not even consider that the initiative could cause harm to the disability community.

Using a wheelchair for one day teaches nothing about the experience of being disabled. It is not the logistics of using a clicker while moving my wheelchair that forms my identity and experience, but rather systemic discrimination. I can imagine that using a wheelchair for one day without any prior experience of physical disability or connection to the disability community would be physically, mentally, and emotionally exhausting, but it wouldn’t teach people about what it’s truly like to use a wheelchair every day.

Until you know what it’s like to be fired from a job for speaking out against being excluded from activities based on your disability, to not have a place to live because of the lack of affordable and accessible housing, to be asked to not fully participate in your education to avoid “disrupting” your classmates, and to fight for your right to exist, you do not know what it is like to be disabled.

Participants in Archer’s Challenge maintain their able-bodied privilege while choosing to temporarily act out what they perceive to be physical disabilities, whereas my understanding of disability is ever-evolving through years of navigating a world that calls my body “Other.”  

In any other context, a group of people in a position of power dressing, acting, or speaking like a marginalized group to pretend to “understand” them would be considered appropriation and discrimination.

Simulations of wheelchair use only teach the negative aspects of disability. I can imagine that using a wheelchair for a day without any prior experience of physical disability or connection to the disability community would be physically, mentally, and emotionally exhausting. Participants do not learn about the history of disability activists, the strength of the disability community, the power of advocacy, and the wisdom of disability conscious.

Even so, to Archer, I want to say thank you for advocating for students with physical disabilities to have equitable access to education and raising awareness of the continued inaccessibility of public and private spaces. I am proud to be part of a community with young people like you who aim to make our communities better places for disabled people to live, work, study, and play. And I am sorry that you had to raise money for your right to education and have to continue fighting for your peers to have a basic understanding of what it means to be a wheelchair-user. But while I appreciate the intentions of Archer’s Challenge, I hope that you will consider using strategies that focus on a more holistic and systemic understanding of disability going forward, such as teaching about the writings of disabled people and helping able-bodied people recognize their privileges.

Disability education must start with humility.

Before able-bodied people can begin to understand what it is like to be a wheelchair-user, they must first accept that they will never fully know the experience unless they become wheelchair-users themselves in the future. Disabled people are the experts on the complexities and nuances of our own experiences. We must center eduction on our knowledge rather than asking able-bodied people to imagine our lives. Instead of reinforcing problematic stereotypes, let’s work together to promote disability education that creates systemic change.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Calling All Towns: Shovel Your Crappy Snow-Covered Curbs

snow covered curb with a red circle and text pointing to an area where there may be a ramp but it is impossible to tell because of the snow

I am lucky to have lived in Colorado my entire life, enjoying the 300 days of sunshine, outdoor adventures, laid-back vibe, and genuinely kind community members. But Colorado winters can be brutal, especially for people with mobility disabilities. When homeowners and business owners either do not shovel at all or fail to shovel an accessible path, the beautiful winter landscape becomes a dangerous obstacle for many.

Crappy snow-covered curbs are not just an inconvenience for those of us who use mobility devices. They can literally make the difference between maintaining employment, accessing medical care, and getting food or being unable to leave our homes.

Last winter, the property management at my complex repeatedly shoveled snow into the ramps outside of my unit. They also only cleared paths for cars in the parking lot, leaving several feet of unpaved lot between the sidewalks and parking spaces. Despite many complaints to property management, I got stuck in my house for days at a time until the snow melted or a friend could shovel me out of my unit. Even when I could leave my unit, there was a chance I might not be able to access my destination if the curbs leading to the building were not cleared.

Do you think that attaching a shovel to the front of my chair or hoping on an all-terrain wheelchair will magically solve this snow-covered curb problem? I wish! Shoveling my way out of potentially multiple feet of snow is (1) not physically possible for my body, (2) logistically very challenging, and (3) dangerous. And unfortunately, those fancy all-terrain wheelchairs are out of the question for me because they can easily cost several thousand, if not tens of thousands, of dollars and could be a nightmare to transport. Your suggestion to get one is not funny; it is a harsh reminder that the burden for access is wrongly placed on disabled people and not the community as a whole.

That leaves only one option: Properly shovel your sidewalks, ramps, and paths! While a crappy snow-covered curb is merely bothersome for most people, it means segregation from the community for those of us with mobility disabilities. This winter, please keep people with mobility disabilities at the forefront of your snow clearing efforts. By making a path for us, you are ensuring that everyone can navigate through the storm.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.