Chris Worth


My journey as a community organizer began in the coal fields of West Virginia, where I organized to bring an end to the injustices of mountaintop removal. One day, I was sitting around a table with some folks, and a question popped into my head: “Where are my people?”

It was at this point I realized that there were no people with physical disabilities at this meeting, and I couldn’t help but wonder why. Why, I thought, is the community of people with disabilities not present here? Doesn’t this issue affect us, too?

That burning question was the catalyst that fueled my fire to organize a group of about 50 people with disabilities with the end goal of enacting positive change in the community through direct action. I also wanted to make sure that the community of people with disabilities would be at as many movement-building tables as possible.

We didn’t know it at the time, but the Enable Project, as we called ourselves, would be responsible for raising awareness about inaccessible infrastructure in Huntington, W.Va., though the March for the Right to Ambulate. We also successfully got a person with a disability elected to the city council, and we did various other social change work in the four years the Enable Project was active.

Fast forward about two years later when I was hired as the grassroots community organizer at Paraquad. I was tasked with organizing a group of about 15-25 adults with varying disabilities.

Having been drawn to St. Louis because of Paraquad’s strong connection with the Disability Rights Movement, I was stoked to bring my knowledge and passion for organizing and justice to bear on the group and learn from an organization steeped in a movement that I wanted to know more about.

When I got the job, my brother expressed to me that it would probably be awesome because Paraquad had this longstanding direct action group; you see, I was afraid because I had never worked for a large organization, and didn’t know how the organization would respond to organizing principles.

I soon realized that my task was going to be much more difficult than my brother had framed.

Paraquad did have a longstanding group — the Community Advocates — that had been born out the Independent Living Program, first through the guidance of a staff member who actually knew organizing theory front and back and planted the seed of community organizing in the initial version of the group.

By the time I joined Paraquad, the Community Advocates were under the direction of another staff member and had somehow lost the organizing emphasis of the its early days. The group had some successes, and became well-known for Americans with Disabilities Act surveys and some heavily guided direct action. Although some members may not have called it that.

By the time the Community Advocates came under my charge, the relationship that had formed between them, the Public Policy and Advocacy Department and the rest of the organization was a strained one.

The group that called themselves Community Advocates were passionate, but wrapped in that passion was some longstanding anger about problems that a well-meaning, helping system had failed to acknowledge or address. Furthermore, the group lacked the necessary tools to effectively channel their anger because they became reliant on the leadership of Paraquad to dictate their direction, and as I observed it, even thrived off of thinking of Paraquad as a “big brother.”

This meant that many Friday mornings were spent attempting to unravel problems — everything from interpersonal issues between group members to campaigns that were not fully embraced by the Community Advocates because they didn’t have real ownership. Someone else chose the target and the tactics to address issues.

This pattern had been going on for years before I arrived, and this meant dealing with years of unspoken resentment and angst. Paraquad had a weird, strained relationship with the Community Advocates. Staff members who were not directly involved in group meetings would come in and reprimand the group. Oftentimes my supervisors would tell me that I could do one project with the group only to deny the project a week later. This made the group even angrier and resulted in screaming matches during meetings.

For the first few months, I wouldn’t say anything; I would just observe. Then one day, I asked the group what it was they wanted to do, and they said, “Well, you tell us what.” They commonly called me the “boss,” and would defer to me constantly.

Now remember where I was coming from. As an organizer, you rarely to never take the lead. You find community members who are community leaders to take that lead. So naturally, when they called me the boss, I recoiled.

I was frustrated to say the least. And with every Friday meeting, I began to wonder if there was a solid answer to my question of full engagement because this group was demonstrating an inability to come to the table even within our own community. I questioned everything, from my ability to organize to why a particular community member was no longer showing up to meetings. I often cried after meetings, unsure of what to do or how to handle the next hurdle that would come my way.

At my lowest point, I sat in Paraquad’s auditorium with the door closed in the dark and sobbed. When a staff member came in to ask me what was wrong, I replied, “I just don’t know what to do anymore. I hate this.” It was after that day that I resolved to go all the way back to the beginning of organizing.

Then came the epiphany.  It was as if a light bulb turned on in my head.

If the Community Advocates were truly going to be effective and do the world-changing work of the Disability Rights Movement, they needed to scrap what they were so comfortable with. They needed to break up.

That’s not to say that the Community Advocates as a concept wasn’t radical at the time of its birth — it was radical to give a pool of activists a place to express their activism, especially because when it comes to the community of people with disabilities, radical platforms rarely, if ever, exist. As with most real epiphanies, this idea to push advocacy and activism into a new phase of dynamic being was slow in growing.

But it took root for me during a one-on-one conversation in midtown St. Louis when I said to the activist I was visiting with, “Why don’t you start your own group? I will support you.” She expressed that she didn’t like all of the sitting around Paraquad’s Community Advocates were doing.

It came to me that the way I would handle an issue like this if it came up in West Virginia was to break the group into smaller community groups. As it so happened, Paraquad itself went through a substantial shift in administration at the same time. When Aimee Wehmeier joined Paraquad as president and CEO in 2013, my department felt like we had a leader who would back the reorganization of the way Paraquad supported advocacy.

So I began the slow and steady process of reengaging the Community Advocates. Much to their chagrin, the first step was to meet in a different location. We also began talking about plugging into other groups in their communities. This was not an easy process to say the least. I would even go as far as to say that there were times it was physically painful. But the pros far outweighed the cons, and the positives far outshone the negatives.

We now support, through a reciprocal relationship, an 86-member (and growing) coalition that is fully engaged in the work of the Disability Rights Movement. The Coalition for Truth in Independence is made up of 12 community groups that span three college campuses, north St. Louis County and west St. Louis County. Many of the former Community Advocates are currently in leadership roles within CTI.

Each community group plans for and organizes its own campaigns with our support, and CTI as a whole has successfully executed one direct-action campaign and is in the planning stages of another.


Because the work starts in the community, not in the long-established, insulated organization. It begins with conversations around kitchen tables with coffee, much like the ones I participated in about mountaintop removal. Most importantly, recognizing the unique gifts and talents of the people present at that table will keep folks engaged for the long-term. Because of the innovative leadership now in place at Paraquad, the organizing team can finally do what the late Jim Tuscher, our first department head, established it to do: organize.

I can honestly and proudly now say that I found the answer to my question. But it took years of hard work, dedication and commitment to a bigger picture. And the question has not entirely disappeared. We must always look for ways to effectively engage our community members in the work we are doing. The work only stops when we can all say, regardless of disability, that we live in a fully, physically and attitudinally accessible world.

I’ve come to realize that the answer to my question is a constantly evolving, maturing one as we move into the second wave of the Disability Rights Movement.

Christopher Worth is the Organizing Team Manager at Paraquad. He can be reached at

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