Grassroots Organizing: A Critical Part of Systems Advocacy
By Laura Case
I have been the Systems Advocate at Westchester Disabled On The Move since mid-September of 2017. Most of my background has been in organizing around housing and homelessness. But I also have limited experience and training in the peer advocacy/support movement of the mental health community. The main idea behind peer advocacy is that people with mental health diagnoses have a right to give real input into decisions about their own treatment and lives. They also have the right to advocate for others with diagnoses and help them to do the same.
As a child I was diagnosed with Asperger’s Syndrome (now considered to be part of the Autism spectrum) and ADHD. I initially had little say in how I was treated. So when I found this concept as an adult it was extremely empowering for me. It probably helped set me on the path to becoming an organizer. Peer support has now largely become part of our state’s official mental health system. There is an (optional) state certification, training, and jobs at centers which provide services and activities. But first there was a grassroots movement-actually movements- which organized and spoke out to get the idea of peer advocacy to be seen as legitimate.
This is an interesting juxtaposition because in the world of community organizing the word “advocate” usually refers to a person who provides services or who speaks for changes on someone’s behalf. An organizer is someone who brings together a group of people impacted by an issue or system which then works together to change it. From what I have seen the term “systems advocacy” is more nuanced when used by the disability rights community. It can include grassroots organizing. I believe it is critical that it does.
A single person can sometimes create change at a small or local level. But while movements for big systematic change need leaders to keep things focused, they take a committed group to be successful. This is something I personally struggle with. It is sometimes hard for me to delegate or deal with the small changes that happen naturally when you work with others. But a single person runs the risks of speaking for others instead of with them. They can also become overwhelmed and burned out. A group can do more work and share the burden. A single voice does not have as much power as many. To a politician one person is one vote, limited publicity, and few if any relationships with other stakeholders.
We know the names of leaders of the civil rights movement of the 1960’s like Martin Luther King Jr., Medgar Evers and hopefully, Ella Baker. But they worked as part of, and sometimes as the organizers of groups like the Student Non-Violent Coordinating Committee and the Southern Christian Leadership Conference.
Since joining the staff of Westchester Disabled On The Move I have slowly but surely been learning about the Disability Rights and Independent Living Movements that brought us big victories like the American’s With Disabilities Act (the ADA.) These campaigns were led by people like Ed Roberts who started the movement for Independent Living Centers and Judy Heumann who fights for accessibility in many different places and ways. They achieved these goals by organizing groups of people with disabilities who were willing to speak out (and sometimes to protest about) what was wrong with the way they were treated.
So what does a group working on an organizing campaign look like? I have experienced homelessness in Westchester. Believe me when I say that it is not pretty. For the past year I have volunteered with a grassroots organization called Community Voices Heard which has been helping me organize a small but passionate committee of homeless and formerly homeless Westchester residents pushing for better treatment.
Most of the people in this committee have a very important trait that they share with Judy Heumann, Ella Baker, and those who pushed for peer advocacy to be recognized: they were fighting for something that was in their self-interest. Self-interest is the way in which an issue impacts a person directly, and how they will be affected by it changing. When a homeless person successfully pushes for a shower program or more low income housing it is something that they can use too. Someone who is affected by an issue is less likely to burn out or give up. They have a personal investment in seeing things get better; for others, and for themselves.
People who have experienced a problem also know it and its solutions better than someone who has not; however good their intentions. I also think that people with disabilities and diagnoses are taught that they are not well enough or capable enough to organize or even to advocate. Therefore when addressing issues facing these communities it is even more important to have people who are impacted by them be the ones leading campaigns for change. Seeing someone in a wheelchair getting arrested at a protest or leading a meeting with a politician dispels the myth that they are too feeble to speak out. In the 1990’s the Disability Rights Movement adopted the relevant phrase: “nothing about us without us.”
This does not mean that allies (people who care about an issue but have not experienced it directly) should not join a movement. In the work I am doing around homelessness, allies have been absolutely essential. They can show people in positions of power that your ideas have broad support, and they can help with work and ideas. However, the leadership and most of the core members of a successful organizing campaign should be impacted by the issue they are targeting.
But with great power comes great responsibility. If people with disabilities are the ones with the power to successfully change the systems that affect them, then what happens when they don’t speak up? Not much. Successful campaigns for change are made up of people who are willing to put in real work and time.
I have been taught these ideas through my organizing work, (especially with Community Voices Heard I am not an expert and still learning how to successfully put them into practice. I am not sure this is something you stop learning about. Of the three main projects I am currently working on here at Westchester Disabled On The Move two involve groups of people with disabilities speaking up for themselves and others. The one which may be most important to me is our advocacy workshops which are held on the last Tuesday of every month from 2:00-3:30. These are discussions of local issues affecting people with disabilities. Eventually, with your help, I would like them to grow into a team of people able to organize to change those issues. .