Strong Amputee Advocates Can Rewrite the Rules
by Richard Slusher

Americans with limb difference face many challenges in our day-to-day lives. We have to learn how to do almost everything in an adaptive way, either with an assisted device or without. It can be a constant battle, an ongoing cycle of victories and defeats. Yet we continue to push through to live our best lives.

However, members of our community face serious inequities in the availability of resources, healthcare, insurance, prosthetic devices, and other basic resources. For example, according to the Amputee Coalition, lifetime healthcare costs for people with limb loss total $590,275, compared to $361,200 for people without limb loss—a 63 percent markup. In addition, hospital charges for patients who underwent amputation totaled $10 billion in 2014, and 36 percent of people with a limb difference experience depression.

These statistics may draw a bleak picture, but it is crucial to recognize their severity and relevance if we are to advocate for change and improve the lives of people living with limb difference. For those who have the drive and passion to speak up about the barriers imposed by limb difference, it can be overwhelming to know where to begin.

As I learned, it’s often as easy as telling your story to someone in a position of authority. And there’s no better time to do so than Limb Loss and Limb Difference Awareness Month, which begins in a couple of weeks.

I was born without my right arm and have used body-powered and myoelectric devices for most of my life. In 2020, I was denied a new prosthesis by my insurer after my current device became a burden, and multiple inquiries for explanation and further assistance were ignored. This happens all too often to people seeking a prosthesis, and it’s extremely discouraging. My anger at the healthcare system turned into passion to advocate for change, and I decided that my home state of Ohio was a good starting point.

First, I wanted people to know about the challenges that people with disabilities face. I decided to contact the governor of my state, Mike DeWine, to appeal for an official proclamation of Limb Loss Awareness Month, observed each April. With such a decree, the state would take an important step toward recognizing and publicizing some of the statistics mentioned above about limb loss. My appeal was approved and signed as an official policy for LLAM 2022. All it took was a simple letter to persuade Ohio to formally acknowledge the inequities placed in the path of people with limb difference. 

It’s a small step in a positive direction. But symbolic gestures alone won’t bring about change. The issues must be not merely recognized, but resolved.

Honing in on my personal experience of haivng insurers fail to cover a necessary prosthesis through insurance, it continued to feel absolutely disgraceful and oppressive to be denied a medical device in order to live an adaptive life. I felt that insurance companies shouldn’t hold the power to deny anyone the ability to walk, open doors, cut food in the kitchen, pour drinks, and so much more. I decided it was time to go past a proclamation and join the Amputee Coalition’s drive to introduce and pass prosthetic insurance fairness legislation. Twenty-three states have passed such legislation, in response to the limb-difference community’s plea that insurance should cover costs of prosthetic medical devices.

These laws got passed thanks to the passionate amputee advocates who contacted their state representatives and shared their stories of limb difference. They spoke to the unfairness of insurance companies and painted a vivid picture of the negative impact that occurs each time an amputee is denied coverage for a prosthesis. To deny someone the right to use two arms, or to walk, is a human rights violation. By saying what it is, and by pressuring legislative bodies to act, we advocate for our rights.

I have reached out to my representative in the Ohio General Assembly about insurance fairness legislation, and I was encouraged when they responded with interest in learning more about the issue. Hopefully, through my story and through the power of advocating for what is right and fair, Ohio will not only have a limb-difference-awareness proclamation but also a law mandating fair insurance coverage for prosthetic devices. Time will tell, and I will absolutely continue to be vocal and engaged until I see results.

You can take these steps, too. To every limb-different person who has been denied insurance coverage for a prosthetic device, faced discrimination in the workplace due to their limb difference, or has otherwise confronted inequities and lack of access, you have the power to do something. Contact your representatives in the government. Through the power of your voice, you can bring positive change to a community that needs it.

For more information on how to sharpen your advocacy skills and request a Limb Loss Awareness Proclamation for your state, contact the Amputee Coalition.