by Janet E Hunt
edited: Wednesday, November 13, 2002
Posted: Saturday, November 09, 2002
Become a Fan
Involving oneself in a movement and separating from another
Janet E Hunt
November 9, 2002
Self-advocacy for people with disabilities means standing up for oneís rights and finding equality in the world, to put it simply. I am a part of what is called the self-advocacy movement. Iíve grown-up in New Hampshire doing this sort of work since the early 1980ís. I helped the first self-advocacy chapter get started in 1983. I act as an advisor to self-advocates, meaning that I provide whatever guidance and support the people with disabilities need in order to do what they need to do as self-advocates. In 1991, while I was pregnant with my second daughter, People First of New Hampshire was born. This is the statewide self-advocacy organization. At the time, it existed as a steering committee of New Hampshire self-advocates. Members of this steering committee interviewed and hired me soon after Eliza was born and simultaneously to the steering committee developing as a board of directors. In 1996, I had the honor of accompanying one of our self-advocate leaders to national self-advocacy meetings since she was voted to serve on the board of Self-Advocates Becoming Empowered (SABE). Iíve been involved with SABE since that time. In the summer of 2001, I was elected as one of the three national advisors.
Youíd think Iíd know my place and my role with the self-advocacy movement by now, yet I struggle with it on a daily basis. I believe that there are times when advisors should shut the hell up. Then, I believe that there are times when we are all equal and should have mutual participation during discussions. When it comes to developing a new path for self-advocates to travel - a new goal or project, I want to be able to take pride in sitting on my mouth and letting the self-advocates take charge of their own movement. It doesnít always happen that way. I always have to add my two cents. I hate when that happens.
It isnít my movement. The minute I open my mouth, I know that Iíve influenced whoever might hear me. Once I give an opinion, or even express some sort of utterance, Iíve shown a bias or influenced the thinking of another person. I worry that influence will take on a direction from a root of where I come from, as opposed to the root of where the self-advocate should evolve. This doesn't in any way mean that people cannot tune me out and think and decide for themselves, it just means that I shouldn't even be expressing myself if I were truly a good advisor to the self-advocacy movement.
At a recent meeting of regional self-advocates from New England and New York, we were having open discussion about sheltered workshops. One gentleman self-advocate was of the opinion that people who have ďbehavior problemsĒ may not be competitively employed. Coming from a background where I also wore several hats in vocational services, I wanted to argue this point...and prove that he was wrong. So, when it was my turn to talk, I admitted to the whole group that I was competitively employed, yet I had behavior problems. I wonder why it is that everyone in the room roared with laughter. One friendly self-advocate said that if that was true , than I surely hide it well. I laughed, too, as I donít think that I do hide my behaviors. Donít we all exhibit some sort of ďbehavior problemsĒ?
What kind of movement is it that I am involved? Do I laugh and cry with self-advocates on equal ground, or, do I remain silent and allow participation among those whoís disability is more obvious than my own? Do I dare share an opinion for fear it could possibly influence the direction of the movement?
These are questions I ask all of the time about my role as an advisor. For men who supported the womenís movement - what kinds of questions did they ask themselves? For white people who supported the black movement - how did they know their boundaries? Our role as advisors has never been exactly clear. Because I question this, it has frequently gotten me into trouble with my peers. That, I donít care about. If they arenít asking the same questions as I am, I figure that they do not belong anywhere near the self-advocacy movement.
All of this business about my role and what Iíve dedicated half my life to is overwhelmingly opaque to me. Over the years of my experience of working and supporting people with disabilties, Iíve become extremely passionate about people, in general, but particularly when it comes to what I believe as all people deserving respect, love, kindness, happiness...and given a sense of responsibility. Iím not sure I can do my role of advising anymore. While I support the self-advocacy movement, maybe now itís time for me to leave because it has become too difficult to balance between using my voice and not using it. I cannot express myself in the way in which I desire. If I were to do this job the right way, Iíd be performing my role behind-the-scenes...never to be seen - or heard. In order to empower other people, Iíve had to learn the challenges of disempowering myself. After twenty years, Iíve realized that Iíve lost a bit of my self-expression, my creativity, my talents, my art as a human being. I want it all back. I want to be where everyone works toward empowering each other, because we all belong.
As our world churns itís way toward the pits of battle, I think of my two beautiful daughters as my primary concern. It is their earth, and there ought to be peace on it.
Thankfully, and in time, my friend helped me realize that my involvement with the peace movement was critical. Iíve now found ourselves at anti-war rallies. Iíve found reason to involve myself, without hesitation, doubt or questions that I belong in the peace movement. Everyone belongs in the peace movement. It isnít about what you have for abilities, or that you donít have obvious disabilities. It is simply about all human beings, no matter what gender, race, religion, or color. There is no argument about who ought to be involved with the peace movement. Fifteen thousand people recently joined together marching the streets of Boston, chanting for peace. My daughters & I were among that large number and it was the most powerful, uplifting experience Iíve ever felt. The larger voice is equal to all. The larger number makes people turn their heads and notice. The peace movement, loud and clear, is for everyone.
I want to encourage the people in the self-advocacy movement to look outside of their own movement. I want to get them to come to a peace rally with me. I want to shout at the top of my lungs that sometimes we all have to step outside of our usual boxes within our sheltered lives and become a real part of the world, instead of just talking about it.
I donít want to use my status or my technological links to the self-advocates to open my mouth about the peace movement being as parallel as the self-advocacy movement in many instances. It would be just that - using my role and status with everyone to share an opinion. I do want to be heard, though. I want to be heard by people in the self-advocacy movement without interfering with their space.
The longer that one isolates oneself in our own sheltered world - similar to that of sheltered workshops - the longer it will take for the world to see us as whole, human beings. If I were considered a self-advocate, Iíd want to simply step outside of the movement and become involved with all of the other things that the society is involving themselves in. Iíd want a life outside of the disability arena, yet, Iíd want to come to self-advocacy meetings and share what Iím involved in: that I work, that I play, that I raise two daughters, that I take dance lessons, that I write poetry, that I weave, that I have a wonderful, new friend, that I am on the town library board of trustees, that I hike, swim, ski and enjoy camping, that I joined 15,000 other people in a peace rally...that I am fully involved as a self-advocate. While I do all of these activities, I advocate about the necessity to treat people with disabilities as equal as anyone else should be treated.
Our world we live in has to be peaceful. There is no confusion about my role in wanting that for myself and for my children and for my friends. There is no discrimination when it comes to peace.
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|Reviewed by J Michael Kearney
|Fine writing. I have a few minor squabbles with the "self-advocacy" movement in that I refuse to consider drug and alcohol problems, sexual proclivities (like cross dressing) and other extremely counter-productive and disruptive behaviors as "disablities" or "behavior problems." The primary function of every business is to make money and any employee who does not further that aim must be able to be expunged from that company, so that they can find some area in which they can be truly productive. // As to the peace movement, I think everyone prefers peace to war. I firmly believe that most people would agree with me that peace can only be assured through strength...or "Peace through superior fire power," as the saying goes. In that regard, the Bush administration is the world's foremost peace movement. The conciliators, appeasers and people who'd prefer to "talk things out" rather than defend what they believe in are, in effect, advocates of war, genocide and slavery since those are what happens when civilized people (like the industrial West) try to "negotiate" or "talk" with the savages of the Mid-East. // Well written though, despite our disagreements.|