Self-Advocacy is a Journey That Can Begin Wherever You Are

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As individuals living with vision loss, we have many opportunities to advocate for breaking down barriers in our personal lives. In doing so, we may also benefit others. In this newsletter, Council Executive Director Denise Jess shares a recent personal experience navigating challenges to healthcare access. Denise’s story provides tips for building your own advocacy skills.

Advocacy is as much a part of my personal life as it is my professional one. After recently being denied a medical procedure by my insurance carrier, I’ve been on a self-advocacy journey. So far, I’ve advocated for accessible forms, filed an appeal of the denial of service, and testified at an appeal hearing. I hope that sharing my story will help others understand that each of us has the right and the ability to advocate for ourselves when faced with systemic obstacles, whether from an insurance company, a government agency, a school or any other institution.

Know Your Rights

When a situation feels unfair or puts limits on us simply due to our vision loss, it’s important to know our rights. When I received a denial for a healthcare service that my physician and I believed would be beneficial, I knew I had the right to file an appeal.

I dug into my insurance carrier’s website in search of an appeal form and found that the necessary paperwork was in an inaccessible format. The form needed to be printed and filled out by hand, a task I’m unable to do privately and independently.

I knew my insurance carrier’s forms were not in compliance with the Web Content Accessibility Guidelines (WCAG), a set of standards published by the World Wide Web Consortium (W3C), which is the internet’s main international standard-setting body. So my first step in filing an appeal was to advocate for making the appeal form accessible. As a result of my communications with the carrier, they realized none of their forms were compliant and were not accessible to anyone using screen reader software. The appeal form and other forms were amended for accessibility and I was able to complete the appeal form privately and independently. Now these forms are accessible for anyone else who may need them.

Do Your Homework

Even though I’m quite familiar with the WCAG, I reviewed the guidelines to be sure I was quoting them accurately. Doing this helps create credibility with those I’m attempting to influence and strengthens the case I’m trying to make. I’ve also done further learning about the implications of the denial of services and any negative impact for me as someone with a vision impairment. This information has been incredibly useful in both filing the written appeal and giving verbal testimony at the hearing.

Represent the Best Version of Yourself

To say I was upset about being denied medical coverage and then encountering inaccessible forms is putting it mildly. I was furious! However, I needed to channel that fury into effective communication. This is how to achieve that:

  • Be clear, concise and respectful in all written and verbal communications. Stick to the information and your experience directly related to the issue. Demonstrate respect for the person you’re addressing. Even if what you’re requesting is a basic right, clarity and respect go a long way in moving things forward.
  • State the desired results in concrete and actionable terms. For example, in my request for an accessible form, I only focused on the need for the form. I did not touch on issues related to the denial of service, since I knew that was a different part of the process.
  • Share any consequences for the agency or business in a straightforward way without threatening or overdramatizing. In my communications about the inaccessible form, I focused on their specific WCAG violations and how they create barriers to healthcare access. I also stated my assumption that the carrier did not wish to intentionally inhibit access to its subscribers. They were simply unaware that they were out of compliance and hadn’t thought about the negative impact.
  • Submit clean, edited and proofed documentation, and prepare talking points when necessary. Being well-organized in your presentation builds credibility and shows your commitment to bringing about change.

Be Persistent

Rarely have I been granted what I’m advocating for, either personally or professionally, on the first ask. Even though the insurer made the appeal form accessible and revised all their other forms right away at my request, this was not my first attempt at securing accessible forms over the years. For every two steps forward, there was often a step backward. This is probably not the last time I’ll need to address the accessible forms issue with an insurance carrier or a healthcare provider.

I’m still waiting on the appeals committee’s decision. Since this is a high priority issue for me, I’ll just have to hunker in and take the next advocacy steps if they uphold the denial of coverage.

Celebrate Wins and Express Gratitude

Advocating for our rights is a journey, and it can take a long time and a lot of work to get to our desired finish line. Taking time out to celebrate the smaller successes along the way can give us the energy and resilience to keep going. You can bet I shouted with joy and relief when the accessible and fillable appeals form landed in my email inbox!

Including others in our mini-celebrations by saying “thank you” goes a long way in keeping them engaged in the journey. During the appeal hearing, I started out by thanking the compliance team for making the documents accessible, noting the benefit to me and any other people who rely on that accessibility. The chief compliance officer expressed genuine appreciation that I took a moment to say “thank you.”

Start Where You Are and Grow from There

All too often, people tell me they find self-advocacy overwhelming and don’t know where to start. It can feel scary to make ourselves vulnerable and maybe even risk embarrassment. I often remember that if I’m experiencing a barrier, then likely someone else is too. Knowing I’m not alone and that my actions could benefit others gives me the energy to be an advocate.

Starting small is a powerful act. Consider telling a cashier that the check-out kiosk is difficult to use because it’s not accessible. Ask your doctor to make a form available to you in a format you can access. Ask your town or city officials for an accessible pedestrian signal or sidewalk repairs to make it safer for you to travel. By doing these small things, you are educating those around you and opening the door to possible change. The first step in advocacy is often education. Sometimes a lack of awareness is the only thing stopping a public official or store manager from making the change you seek.

The sheer number of things that could use our advocacy attention can feel overwhelming. Take on something that matters to you and that you already feel well informed about. There will be other, bigger advocacy efforts to take on later, or simply let others manage. As advocates, we can’t do it all. But if we can focus our efforts, we have a better chance of succeeding.

Ask for help! Reach out to organizations like the Council to gather information, ideas and strategies. Visit websites, send email inquiries, ask questions and be open to learning.

Believe in yourself as an advocate. Your experience, your voice and your rights are important no matter your level of vision loss, age, gender or race, or whether you live in rural Wisconsin or a larger community. As we each strive to grow as advocates, let’s be guided by the wisdom of the human rights leader Hellen Keller: “I am only one; but still, I am one. I cannot do everything, but still, I can do something. I will not refuse to do something I can do.”

Resources

Web Content Accessibility Guidelines (WCAG) Overview

Advocacy Resources, National Federation of the Blind

Disability Rights Resources for People with Vision Loss, American Foundation for the Blind

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