It’s sometimes a slippery slope…. being passionate about things, having strong opinions, and standing up for wrongs we see around us. Not only can you get yourself in some hot water by being too strong-opinioned, but sometimes you can also cross over into speaking for someone else as if it’s your own experience. We’ve seen this a lot in the disability field. And this became a particularly important point the more we became involved in assisting people with disabilities to be better heard (literally and figuratively). I mean how could we help someone be heard by others & yet also speak for them? Nope. Does not work. We had to take a very strong stand within Networks that we are not an advocacy organization. We are not advocates. We do not speak for others. What we do is help support people to speak for themselves.
This became very apparent in many training sessions we provided. From our earliest days, we hired (yes, paid them money) people who experienced certain situations to teach others about that experience. I mean I can tell you my observations about something, my side of the story, but it’s not MY story. Period. We hired people to be staff and consultants who lived the real deal. We called them experts and pushed others to recognize them as the experts they are. And rather than rally or petition or give public statements, instead we helped real people rally & petition and give public statements…. if that’s what they wished to do.
We helped people speak their dreams…. and their nightmares…. their demands…. and their sorrows. And we believed with them that together we could make changes and that all things were possible, even the most incredible of dreams. As I often said, I longed for someone to tell me an unimaginable hope, equal to the Taj Mahal, but instead most were what often felt mundane or small (yet huge for them and their current existence)… like a home where staff answered the phone with “Gloria’s house” instead of the physical address or the sponsoring agency’s name… or a job where people saw them as competent and they got paid like others… or an opportunity to be on a regular sports team at school and not just be the team mascot or helper.
This has not always been an easy route to take. We have sometimes gotten slammed for being “zealots” or “purists” and many times were said to be “unrealistic”. We missed out on some contracts, projects, events, and opportunities but most were conscious decisions by us that we did not wish to be a part of them, we would not compromise. And sometimes we found ourselves in the middle of conflict, helping someone speak up for themselves maybe for the first time ever and not to the delight of others. But we pursued and persevered. And we learned so much, especially how important this role distinction was…. and how we must continue on.
In today’s disability world it is more and more recognized and touted on tee shirts and bumper stickers refrains like “nothing about me without me”. But we sometimes see old holdouts to another age existing where some people are still seen as not capable enough, aware enough, strong enough, etc. and others feel they can decide for them, speak for them, spend their service dollars, and more. We see this reflected in many political topics, too, today where some groups feel they can decide for other groups. And yet we are also seeing more and more representation in movies and TV, commercials, and ads where real people are there in the mix, speaking up, being themselves, and being a real part of life.
We at Networks will continue to push this envelope, it is our way of “advocating”. We will continue to speak our minds and share our feelings. But please know we will not speak for others.