Grassroots advocacy

Every day, members of the United Spinal community face unequal access or exclusion due to physical barriers and ineffective policies, practices, or procedures. When frustrations arise in healthcare, mobility, education, work or limitations in quality of life, through grassroots advocacy, your personal experience becomes the seed that can bring about necessary change.

What Is Grassroots Advocacy?

Grassroots advocacy is an awareness initiative generated by concerned individuals that builds a community of support both on the ground and online. People seeking a solution use their own voices to contact organizations or local, state, and/or federal legislators regarding an issue that affects them directly. As a grassroots advocate, each of us has an opportunity to ‘plant seeds’ of concern and cultivate the kind of attention and action that solves problems. By sharing a personal story of need, your own experience and effort are what nurtures a movement to grow, like grass, and affect change across the country.

Anyone Can Be a Grassroots Advocate

Grassroots advocates are members and allies of a directly affected community, like you and me. This means, anyone who is personally affected by an issue has the power to act as a grassroots advocate. Many believe this is strictly the job of direct lobbyists, or those who politically advise on behalf of organizations and maintain professional lobbyist credentials, but it is not. There are also patient advocates, who support individuals on a case-by-case level in a medical setting. Grassroots advocates, instead, voluntarily speak on behalf of themselves and others for local, state or national policy change.

Grassroots Advocates in Action

Gina Schuh

Gina Schuh, AZ, C-5/6
United Spinal’s Western Region Advocacy Coordinator

For both business and pleasure, Gina Schuh loves to travel. Over the years, Gina has grown frustrated with the large variance she faces in the height of hotel beds. When a bed is too tall, it makes transferring from a wheelchair impossible or unsafe for those doing so independently and places an additional strain on anyone assisting. After hearing consistent complaints from other wheelchair users left stuck in their chairs after long days of travel due to inaccessible hotel bed heights or a lack of open space underneath a bed frame needed by those who use a Hoyer lift, it hit home that this was a communitywide problem that needed her help.

Gina explains,

“In the grand scheme, this seems like a small issue, but it has enormous impacts on people with disabilities being able to travel with ease. Currently, this appears to be the result of a lack of education and awareness by policymakers and those in the hotel industry.”

After raising this issue at the National Council for Disability meeting in Las Vegas, Gina checked with the United States Access Board about any hotel bed height guidelines, which she learned were currently nonexistent. Schuh engaged other wheelchair users about the issue and got to work on a resolution that reflected the community’s needs. Armed with a plan, Gina started a petition on by summarizing the issue and asking those in her network to read, sign-on, and share. Gina notes,

“It was a relatively simple process, but once it was out there, it spread like wildfire. Seeing the huge amount of sharing and support by all the signees has been great. It clearly shows what an important issue this is and how much our community needs hotel bed height regulation.”

Today, the petition has 40,000 signees, but Gina is looking to increase that to 100,000 signatures. With this clear demand, Gina will start talking to legislators and bring this data to the U.S. Access Board along with individual experiences and stories to hotel brands and chains to help realize this important need.

“Every single person who has signed this petition has made a difference” says Gina, “this is definitely grassroots!”

How you can help

Gina’s movement needs your help too. If you or someone you care about is affected by inaccessible hotel bed height, please read, sign, and share this important position and help continue the momentum of this exciting grassroots effort.

Sign the petition
Kelley Simoneaux

Kelley Simoneaux, VA, T-12
United Spinal’s Richmond, Virginia Chapter’s Advocacy Co-Representative

Similar to Gina’s experience, Kelley’s life as a paraplegic uncovered a large-scale problem that she wasn’t willing to overlook. In the summer of 2018, Kelley was refused a ride by an app based ridesharing service due to being a wheelchair user. Despite transferring into the vehicle independently and arranging for help to store her wheelchair, the driver refused to have the wheelchair in the car and left Kelley without a ride.

After this experience of discrimination, Kelley sought out all avenues that were available to voice her grievances and to bring attention to this issue:

● Filing a complaint directly with the ridesharing company via their app
● Calling out the company and experience on social media
Contacting news networks and sharing her story on television
● Filing a human rights violation in the county where the incident occurred

Still, Kelley wasn’t convinced that the steps available to her would bring about any real change and felt concerned that the company showed no accountability when it came to situations like this. As she shared her story, Kelley began hearing from other wheelchair users about their own negative experiences using ridesharing due to discrimination or because wheelchair accessible vehicles are limited or unavailable in their city or state.

Understanding the negative impact this issue is having on access to transportation across the nation and learning about the gaps in regulation and recourse, Kelley knew she had to keep pushing this. After working for months to get a sit down with corporate leadership from Uber, Kelley left feeling demystified with the lack of enthusiasm the company showed in making accessibility improvement changes internally. Kelley’s reaction, “Game on!” Making a personal commitment to work with legislators to fight for regulations that assure ridesharing services are accessible for those with disabilities.

“If they’re not going to do it on their own, what I can do is help shape policy that will make them change how they operate.” says Kelley.

Simoneaux has been busy speaking with lawmakers at the county, state, and federal levels. She is trying to understand and help script what equal rights access on all levels of ridesharing service vehicles and transportation needs to look like. To do so, she needs to hear from other members of our community about their experiences using ridesharing services.

How you can help

You can help Kelley on her quest by filling out this ridesharing user survey about the reasons you do or do not use ridesharing services like Uber, Lyft, Curbed etc.

Take the survey

Planting Your Own Grassroots

When it comes to grassroots advocacy and addressing the barriers we face living with physical disabilities, we have to ask ourselves an important question: do I accept this or is there something I can do to make this situation better for myself and for others? If the answer is yes, it’s time to start planting your own seeds of change.

If you are interested in getting more involved with grassroots advocacy, speak with your United Spinal chapter’s advocacy representative and consider joining our Grassroots Advocacy Network:

— Brook McCall, MPH, United Spinal’s Grassroots Advocacy Manager