Think Freestyle

All Souls

2010-11-08T14:22:00.001-06:00

Community ritual is a pretty powerful thing. Community rituals give us an opportunity to come together and share about how something means to you. Over the past month I have had the honor to participate in a lot of community ritual. A wedding, Dias de los Muertes, and the All Souls Procession have all fallen in the last 31 days. It was a fascinating experience to design a wedding ceremony that reflected both me and my partner. To not feel pressured by tradition, but to acknowledge its role and to examine if any pieces fit us. We ended up with the most non-traditional ceremony I’ve ever witnessed, but the response from our very traditional Grandparents down to our friends was the same. Everyone was overwhelmed with emotion and reflected the beauty we shared right back to us. My Grandma later asked why we exchanged books, but didn’t even seem worried about the lack of exchanging rings.
Dias de los Muertes came and as I set up my altar I knew that people all over the city and world were also remembering their loved ones who passed. Technically I celebrated by myself, but even driving around the city seeing altars and the colorfully decorated cemetery I knew I was part of a ritual that allowed a community to grieve, celebrate and take time to remember.
It seems like the common theme of community ritual is the act of “showing up”. Thousands of people turned out for the All Souls Procession last night. It was an opportunity for people to share what death meant to them, to remember, to let go of the past. Death is political, it can feel silent and still, it rattles us to our core and that was all reflected in the procession. Anyone could be part of the procession and everyone took part even if they were watching on the sidelines. Hundreds of people marched through the city made up as skeletons, giant puppets, or on stilts. There was a lone saxophone player, every kind of drums imaginable, a mariachi band and bagpipe players. There were groups of people who created symbols of many people’s death. There was a giant twirling world for women who had died of breast cancer. There were kites with writing, sharing stories of the L, G, B, T folks who had passed. Hundreds of paper butterflies from strings for those who have died in the desert, altars and banners for those who had died in the war, a giant oil slicked crane on wheels for all the animals that died in the B.P. oil spill. Death is also personal and hundreds of people carried signs with pictures of loved ones, dragged behind them simple to elaborate altars with flowers, candles, giant paper-mâché creations or simply marched down the street. There were babies in strollers and Nanas using wheelchairs in the procession. Everyone was expressing their story of death. Those of us on the sidelines were oddly quiet for a scene that to an outsider looked like a parade. We witnessed what we did not have the words or creativity to share. We clapped when something hit home. We added our items and intentions written on slips of paper to the massive bowl that is set on fire at the finale performance at the end of the procession.
Many Mouths One Stomach sponsors the All Souls Procession. From their website they say, “Many Mouths One Stomach (MMOS) is a Tucson-based collective of artists, teachers and community activists who come together with the intent to create, inspire, manifest and perpetuate modern festal culture. “Festal Culture” is the expression and fulfillment of core human needs through public celebration, ceremony, and ritual. The All Souls Procession is an event that was created to serve the public need to mourn, reflect, and celebrate the universal experience of Death, through their ancestors, loved ones and the living. Our events establish a legacy that reclaims public space through art and blurs the line between participant and observer, ritual and performance. Together with our commitment to education, outreach, and collaboration, MMOS stewards a vision wherein the creative act becomes a mode of living.”
……And that it did. For me community ritual at its heart is a chance for renewal. Being able to come together with people who I live near to share about something, that experience is what makes me feel like I live in a community. I need that expression, that chance to listen, the ability to learn and grow. It gives us a different kind of path then just talking or debating to examine some issue or change which affects us all.

Choice?

2009-11-24T15:12:00.000-06:00

So last week was a stressful day. I was proud of myself though, most days I exercised and meditated which is sometimes hard to get both done consistently. When meditating, as hard as I would try to clear my mind, I found my mind kept going back to work. Did I email this person, oh, that needs to get done, did this person do that….Did I mention I work from home?
I’ve talked to several folks who work full time from home about the challenges and benefits. It’s great to wear whatever you want and difficult to have work staring you in the face on weekends. My ability to manage many projects at once and to focus intensely for hours makes me an ideal person to work from home. Yet, for me having such easy access to work whenever my obsessive need to worry (or need to control) hits definitely falls into the “challenges” category. I can become consumed and usually give all of my energy to work tasks and have no energy left, usually kicking off my cycle of not taking care of my spiritual, emotional and physical needs.
I enjoy managing big projects and getting tasks done, but I’ve been trying to figure out where the balance is between working frantically because overwhelmed and making a choice to do something. And what about making a choice purely to meet others expectation? Where does intuition fit in? How do we listen to our intuition?

A beginning that is a long time coming

2009-11-10T13:17:00.001-06:00

So most afternoons last week at 6pm I looked at the clock, took a deep breathe and tried to wrap up what I could in terms of tasks for work, ending with another, 9, 10, 11 or 12 hour day. I work long hours during the week ending up collapsing on the weekend. The weekend then is spent journaling, reading books about taking time for my life and creating lists on how I will NOT do this intensely unhealthy schedule again next week.

It is a cycle that I have been going through for literally years. Intermixed with all this I’ve had a deep knowing that I need to move past my anxiety and fear of…(well there’s a long list). Needless to say this pattern didn’t just pop up in my life, but has come out in many different ways. Often I circle between frenzied bouts of trying to figure out some kind of reasonable system for what I think I should do, with bouts of depression at not feeling like I’m able to control my life.

And while I’ve been on this path I’ve noticed I am not alone. Many folks I know and love struggle with this too. It doesn’t seem to matter much if we work for the government, a non-profit or the private sector, many of us feel buried by our work.
I have noticed though that folks working in non-profits often have the stage set for this to be an issue. Many of us are PASSIONATE about what we do. Non-profits as they grow are trying to do more and more with less and less. And I’ve realized as I’ve struggled with my work’s expectations, that it is one thing to do self care when life is reasonable and another thing to do self care when life is unreasonable.
And where does choice fit into this all?

I look forward to exploring this over the next few weeks as I make time to blog and process…

Staying Present

2009-10-26T17:00:00.001-06:00

Its fall! Seeing trees change color, loose their leaves, for a girl from the desert, it’s incredibly amazing. My partner and I took a drive last weekend to actually go and see all this beauty. I took pics to send back to my family and we had a great time getting lost in the trees. It was great to do something to celebrate. I’m all about reclaiming this time of year in a positive way. One of my best friends passed away this month 4 years ago and I’m not lost on the irony of how close his passing is to Dias de Los Muertes. I scheduled some time with a massage therapist on the day of his passing to help me relax and stay grounded. It was a good session and she told me afterward that she kept getting during the session was that there was an intense need for me to stay in the present.

Staying in the present is hard for me to get my mind around. I’m a “big picture” kind of person and am always thinking about the next steps, what happened in the past, etc. I honestly am not sure I have any real idea on what “staying in the present” means.

So, I do what I always do when I can’t figure something out – I go see what others have figured out. I went to a bookstore and skimmed through a book called, “Finding Flow: The Psychology of Engagement with Everyday Life". It was kinda over my head, the author was analyzing and I think conducting a bunch of scientific studies on being in the “present”, but one thing that struck me was --- to pay attention to where you put your attention. In other words, we sometimes put our attention on things that we have no control over instead of on what we are currently doing. If I am interpreting the book right, it seems that we often hoard our energy of attention because we think there is only so much, but there is a difference between giving something attention and curiosity versus obsessing over our interpretations of that thing (or comment, or email, etc) that often takes much more energy then something like curiosity which actually can give you energy.

This point really made me stop, cause I am nothing but obsessive sometimes and often leave myself exhausted at the end of a work day from giving all of my attention to things that I probably didn’t have to spend time “interpreting” and could have just taken them as is. I’ll be trying this next week to pay attention to what I am giving my attention to and how it affects me.

On self care, activism and creativity

2009-10-13T19:38:00.001-05:00

I’ve been thinking a lot of the concept of “doing my own work” in terms of my responsibility to push myself to learn and grow and become a more intentional ally to other communities that I may not personally identify with. I have been thinking about how this important work that is essential to my being the kind of person I want to be, how that fits in with self care.

So much of learning about other communities’ history and values has been born out of so much pain, and pain is important. It is important that people can be real with their pain in a safe space. That others can witness the pain and hear it, feel it, not turn away. Yet, as activists seeking to take care of ourselves, how do we make space for this pain and yet not get stuck there? It is so important to me to figure out real ways we can be FOR being more human (compassionate and respectful) towards each other, in community.

I had the privilege to watch a clip of an interview of Buffy Sainte-Marie on Democracy Now. Buffy is an activist who totally seemed to be coming from a place of self care – choosing to do things that make her happy and including activism in that. I loved what she had to say about being an artist. That writing curriculum, songs or painting pictures all came from the same place inside. That the kid in her never got shut down and she can find her fun/work from this place.
It was to me very beautiful.
I put myself out as a poet, an artist, but not often as a singer, and I LOVE to sing. I wonder if the songs I have inside, that I always considered too tender to share, if writing them down, learning about what they have to say, going deeper, all while making space to hear other people’s truth, is actually a way to “do my own work” in a way that makes me happy?

Can creativity be serious and deep? Can it push us to new levels of understanding? Maybe it’s the only thing that ever has….

“And as an artist, sometimes you can artfully say something in a three-minute song that it would take somebody else a 400-page book to write.” - Buffy Sainte-Marie

Noticing the storm

2009-09-30T16:21:00.000-05:00

I know it when I feel it. That blood boiling point. That point when I’ve been working with out a break and I get that email or phone call that just pushes my buttons. I think for most people they either start snapping at everyone that comes along past this point or they take a break.
I have this weird response where I instantly feel myself leaving my body and I concentrate on what I’m doing even harder. I do this, burning through ten times the energy just to keep going. When I’m under stress I often end days so exhausted I sit not moving in front of the TV or I sit in front of the TV and cry.

So, big moment yesterday that when I started feeling this way I took my lunch break (YAY). I did some adapted yoga. I meditated. And I kept getting this image in my mind of a desert storm. Sitting in the desert seeing a violent storm move in is intimidating and scary. But it’s not something you can control.

I think sometimes stress is a misguided need for control. Working in social justice we live our lives trying to “affect change” in the world. But creating change is a thin line away from trying to control. Ideally it’s about modeling behavior, getting investment from others, creating a loving and supportive space. It’s about respect, challenge and hope, not about force.
There’s this great book called, Practicing Peace in Times of War by by Pema Chödrön that I originally got thinking it would have good action strategies. It turned out to be all about how to REALLY notice the emotional reactions with in yourself. To REALLY feel them. To pay attention to them. And by honoring them we create peace within ourselves. Therefore creating peace in the world.

Self Care, A Begining

2009-09-28T19:21:00.001-05:00

Self care. So I have been trying to figure out what self care means for me for literally the last 4 years. I have made hundreds of lists, read self-help books about re-prioritizing your time and have created a ton of plans on how to make this happen in “real life” for myself.
Needless to say, I’m still on the journey.

I have been so interested in general to examine how folks who work in social justice movement which are often understaffed and underpaid, how to make balancing self care with life a reality.
So I’ve decided to make this topic a theme for my blog. Hopefully it will start conversations and help folks make connections on this topic/issue for themselves.

As an activist (and admittedly an over-achiever, trying to “do it all” kind of person) I’ve really connected with the Tao Te Ching in terms of guidance on leadership and letting go. There are a lot of translations of the Tao Te Ching and the translations vary a lot. From what I’ve read, the “Tao” is often interpreted as “the way”. I like a description I read comparing the Tao with water. That is flows into the lowest points of the valley, gives many things but does not have expectations, finds the way of least resistance but doesn’t “give up” or not flow…
For more see: http://en.wikipedia.org/wiki/Tao
On that note, I’ll leave you today with this quote, “Emptied of desire, we see the mystery; filled with desire, we see the manifestation of things.”
#1 Tao Te Ching (translated Sam Hamill)

Ode to my Freckle

2009-09-02T18:15:00.000-05:00

I had a lovely freckle that has been on my arm for as long as I can remember. Living in the Midwest is beginning to sink into my body (I’m getting lighter) and my freckle friend changed. I’m not sure if the change is from the lack of sun and it fading away or something else. So I went to the Dr. to see what they thought. And as with most doctors, they didn’t know…so they scrapped it off. As fascinated as I was to see it removed, I was sad to see it go.
A wise friend I was talking to earlier today told me that life is filled with lots of mini losses, which you have to grieve and move on from.
In the spirit of that I share my “Ode to my freckle”:

I don’t remember when we first met
You have traveled on my arm as long as I can remember
Like a comforting reminder of the history I have shared with this body

Playing in the sand, I smeared you with dirt to see how the texture felt on my arm since I couldn’t feel it on my feet
You entertained me for hours as I entertained myself, the bit of exposed skin that wasn’t covered by my body cast
You were with me in the sun watching Folklorico dancers in the park, their colorful skirts swirling
Peeping up at me through the shirt sleeves of my theater costumes
Driving with me in my pick up, windows down, feeling sexy and alive
You were on the part of me that remained mostly unscathed by surgical knifes

You may have been the place where my spunk lived, the part of me that made me hit that boy in preschool who called me names, (and made him cry)
Or maybe you were the source of my forced stubbornness in college when day after day I faced non-disabled, white culture alone…

Whatever you were, together we had adventures
We saw beauty, felt sorrow, and loved
I’ll miss you, but I’m looking forward to the Band-Aid coming off
And I know I’ll make friends with the new piece of me which will evolve
The beautiful scar left in your place…

Disability Culture - Redefining Transition Part 1

2009-08-31T14:52:00.003-05:00

Last weekend I spent time emptying a gush of words, anguish, passion out onto paper.
I want to develop this into a much longer article, not just pointing out the problems, but also what (at least i think) the pieces of Disability Culture really are. Disability Culture - Redefining Transition Part 1, enjoy.
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When we think about Disability Culture, we have to back up a few steps to look at Disability identity and how it is shaped. Disabled kids are rarely born to Disabled parents. When you think of where those kids get their messages from about being Disabled, they get them from their parents the media, cultural, religious and other communities they are part of, service systems that they are channeled into, etc.

Message from parents can be anything from, “You are great the way you are”, to “You need to work hard to be seen as least disabled as possible”, to “I pity you and have no respect for you”. Parents bring with them what they have been taught about Disability and rarely for our parents’ generation (pre ADA or IDEA) have they even known a Disabled person other than their child.

Media comes from people, so messages can range, but the most prevalent messages are of 'pity' or of 'inspiration'. These themes have their foundation in academic areas which is founded in institutional care, and medical practices. Academia assumes that it can teach students; what it means to be Disabled, what Disabled people and/or their families want, and how to make Disabled people as least Disabled as possible so they can “be happy”. Systematic historical oppression, murder, serialization and abuse of Disabled people through history at the hands of the professionals on which our current academic pedagogy (themes learned in every class to teach a body of knowledge with a consistent message) is based on, is rarely taught or even acknowledged.

There have been many books and articles on how media affects identity for Disabled people, but often the thing most people with Disabilities leave from an encounter with Disability in the media is discomfort and shame.

Media reflects Academia, Professional Spokes-people groups and Parent advocacy groups. From this sole information it puts forth such strong messages, often saying that it is explaining the Disability experience to the watcher. This leaves us, the Disabled viewer, left feeling disorganized and unsure of our identity.

The other area we receive intense and on-going messages about who we are supposed to be is in social service programs. If a person is born Disabled in the United States they are often connected almost immediately with social service programs. Social service programs are rooted in academia and “professional studies and analysis” rarely done by a Disabled people, let alone from a Disability cultural viewpoint. Many of these programs are geared towards the parents, but even as the child grows into a teen, this is still is often true. Children are rarely asked what they want. These programs almost always function from a "medical model" perspective, that it is the person with a Disability's responsibility to adapt and/or change.

Most of these programs (early intervention programs, special education administrators, social workers, Occupational Therapists, Physical Therapists, psychologists, transition program personnel, etc) all have an agenda or goal to manipulate the child to fit into cultural norms. The messages Disabled children get in these systems is a type of long-term shaming in order to motivate the child to act as least Disabled as possible. They are told no one will like them, that no one will help them if they can’t do things by themselves. If the child resists they are given further labels of behavioral issues and channeled into more systems. This is done to “help” the child fit in at school, work and later the mainstream community.

Is there a balance that every human being has to make to be part of the community? Absolutely, yes, but to motivate someone to make that balance through shame, pity and instilling in the end, self-hate or internalized oppression, can never really make the changes the “professional” wants to see for the child.

Even more, this systematic abuse is given the label of CARE.
Many Disabled adults discuss the trauma of Physical Therapy (to walk vs. use a wheelchair) not due to physical pain, but the emotional abuse inflicted upon them to “motivate” them to want to walk. Adults, with various disabilities, after failing to meet expectations over time often learn how to be highly manipulative to make sure they get the emotional/physical/community contact or response they need.

All of these expectations and long term, low-scale abuse leaves a majority of Disabled people with internalized oppression. Basically leaving them to believe all these negative and bad messages they hear. Feeling guilty that their body/mind/spirit disappointed the service provider and/or parent and expressions of this hate/fear often extend to other Disabled people.

The other extreme are those adults who were able to meet the goals, who bought into the messages of shame and abuse, etc, the ones who are often labeled as inspirations. As adults they have embodied internalized oppression but have done so by inwardly separating “who they are” from their Disability. They can be heard saying, “I don’t let my disability keep me from what I wanted to do”, when really what they mean is, “I have found ways to physically/mentally/emotionally and attitudinally appear as least disabled as possible, and I am now so ashamed of who I am, that I am happy when people say they things like they don’t think of me as disabled.”

So how do Disabled children get to be Adults? They go through Transition. We all do. A simple description of transition is: going through a period of time where we either accept who we are or we don’t. We either find spaces to fit as we are or we hate ourselves and spend all of our time and energy hiding who we are (or trying to). But a question for the reader of this article might be, “what if the messages you got our WHOLE life (or from a certain point in your life) were that you inherently should be ashamed and hide who you are?” How would that affect you?

I have well-meaning non-disabled (and a few Disabled) adults who run social service or transition programs contact me weekly to find out why the young people (ages 16ish-30ish) who they are trying to get involved in their group aren’t getting involved. Or how to teach the youth they work with explain their disabilities and what they need. Or why all of the self-advocacy skills they are trying to teach the young people do not seem to be getting through.

When I bring up the need to discuss internalized oppression, Disability Pride, history, humor, art and other elements of Disability Culture, they often do not know how to hear this or even see any relevance in what I’m saying. When the person I’m talking to is a non-disabled adult and I bring up how they can connect with the Disability community, and the need to reflect on their role as an ally and not as the “voice” or teacher of the Disabled, they usually get angry.

If we really want young Disabled people to fight for their rights and be integrated in the community at large, then the values of Disability Pride, Disability culture and Interdependence need to be there from day 1.

(More to come....)

The question of being an ally

2009-08-25T13:31:00.002-05:00

My partner and I just took a road trip to see the Badlands in SD. We were horrified to see all of the co-opting of Native culture. We stopped at an advertised Lakota history/cultural center that turned out to be located in a boarding school operated by the Catholic church that is STILL an "Indian boarding school".
(The school is called St. Joseph Indian School -
I didn’t realize from the cultural center that this was a current boarding school, until I put pieces together- native kids running around outside, the lack of info in the center on the horror of boarding schools- and then asked the woman working there. She said it was still a boarding school for Lakota children. When I asked if it was controlled by the tribe she looked confused and told me it was run by Father ___. The shock must have shown on my face. I’m assuming she was a Native student working there, she gave me this knowing nod and said, “I know”.)
My partner and I were beyond appalled and it led us to many conversations on how to be an ally to Native communities, or if we even could. My partner is white but I am a mix of colonized people and colonizers. My Dad made a choice to not officially join the Apache tribe when invited in Mexico.
Since living the past two years in the Midwest (I was born and raised on the US/Mexico Border), I have been confronted more than I ever had with the brutal effects of colonization on Native communities. I have also been made much more personally aware of the struggle of my father, of how his struggle to assimilate has affected my family. This has all left me thinking a lot about how to be an ally to Native activists and then an ally in a personal way to my own family…

Home and the AMC

2009-08-06T13:33:00.001-05:00

I cooked Yucca for the first time in my life. Somewhere between hacking the skin off and watching it boil for 30 minutes I realized that despite being born and raised in the desert, (and having a long family lineage from the Border region), I rarely have ate food from the desert. I was raised on beans and tortillas but can count the times I’ve had Nopalitos, Yucca or Prickly Pear fruit, but now living in the mid-west I find I am craving this food from my home. Looking for ways to surround myself with what feels comfortable and perhaps just now realizing that this IS part of what makes me feel at home.

I had a similar surprising experience of home when attending the Allied Media Conference a couple of weeks ago.

I have attended many conferences and usually think that I will be most comfortable with other disabled people. I admit I’ve had some awful experiences at other non-disabled led conferences on issues I’ve cared about, that has made me scared to try again.
It was a pretty surreal experience. Every time I smiled at someone, they smiled back. I accidentally hit a guy with my chair, when he took a step back into my path, and he just said nonchalantly, “Oh, I need to look where I’m going”. This response in itself is HIGHLY unusual. In fact, it is usually one of my most amusing exchanges with people when I use my chair. People who get run over or hit by moving in front of me at the last moment, or by ignoring my “excuse mes” usually will get a VERY angry look on their face until they turn, look down, at which point their look morphs into surprise and then pity and they say “I’m sorry” all condescendingly or in an embarrassed tone. It’s always oddly amusing and disempowering at the same time…

Anyways, one of my favorite moments was in a workshop about using comedy as an organizing tool. One of the comedians featured accused Ex president Bush of having ADHD (attention deficient hyperactive disorder). (During the “Bush time” I also saw a lot of bumper stickers referring to Bush as an “idiot”.) My partner who was attending the session as well raised his hand and said something to the effect of – I think labeling Bush with a disability is completely wrong. Being disabled has nothing to do with it. This comedian is basically saying his negative behavior IS BECAUSE he is disabled. Who cares if he did have ADHD, disabled people can be assholes too.

I’m used of the response at this point from other liberal groups I’ve been with when Abelism is brought up, is the “blank, glazed eyes” stare. Instead here, people HEARD. It was a very powerful experience for me.

It wasn’t all great, I did have an apparently white woman respond to me when I asked her for an Xtra Large shirt that “these shirts were made for people in Mexico, and they are a lot smaller then people in the USA”. To which I responded my family was many sizes. And I had a little remorse when I saw how much my wheels got messed up from squeezing through too narrow doors. But overall it was the best conference/community I’d ever been to. I didn’t even know it was what I needed to feel at home, but it was.

Affirmation Junkie

2009-04-28T19:32:00.002-05:00

I wonder sometimes why it is so hard to share with others what we have to offer. Then if we do share what we have to offer, it is often what WE think THEY think is important. We do this instead of just owning up to who/what we are regardless if they will value it. I struggle with this everyday on a personal level. I’ve also observed this on a social movement level with Disability politics/civil rights.

I once defined myself as a "type A affirmation junkie" and it has been my sole mission as of late to break myself of it. What I was taught about being a disabled person in our society has made me an affirmation junkie. We are taught at such a young age to minimize our “otherness”. I was told several times as a kid to ask people to relate to me as a “person” first, saying things like “I’m just sitting down” (when using my wheelchair). But I’m not just sitting down – my whole body IS different. Or the whole movement of People First language (person with a disability, person with visual impairment, etc). Why in order to be seen as a person do I have to disconnect myself from my disability?
No one ever taught me to ask this question.
This has ramped up to mean that I need to find out what is important to someone else, then figure out what piece of me best “fits” into it. Then sell it like my life depended on it, which actually in the past it often did in terms of working and physical contact, etc.

Disabled people are conditioned to people please. And on a movement level I think it’s been catastrophic. To this point the Disability movement has rotated around avenues where we can disconnect our being “people” from our disability. Looking at the Americans with Disabilities Act, section 504, Individuals with Disabilities Education Act and others– they put the burden of requesting/creating accommodations on the disabled person. Creating an atmosphere right off the bat where we have to negotiate – I’ll give you this (a piece that can fit into “normal”) if you can give me accommodations to also bring my disabled part along. It forces us to divide and conquer ourselves on a level which completely ignores our values, ideas and even pride and culture. Even looking at the people who visibly head our community – they sell normality (non-visible disabilities, and/or white, male…).

We’re left with a society that has NO idea about what our values are and how radical of a change true access would make. As ADAPT protests in Washington this week for the Community Choices Act, the response from the public has been completely misinformed. I’ve seen a lot of comments from people thinking that we are advocating for Medicare to cover nursing homes – and a general sense of “what are those crips complaining about”? People have no idea how life changing home based care would be for millions of disabled people. Why? Because we haven’t shown them – we haven’t put forth our values of Pride and alternate ways of existing (as valuable people).
We need to bring pride to center stage in the movement – social consciousness has to be raised. We need to go from affirmation junkies to powerful vessels of pride and values.

And yes, I mean personally too. :-)

Open my mouth?

2009-04-01T21:20:00.003-06:00

I was talking to some long term activists tonight about building community and one of them told me that "Activism with out clear ideas - you can do it your whole life and then die. If you look at all the social movements in history it took a leap in ideas to force organizations, etc to make the leap too." That the process of building community is the process of revolution.
We talked about if your job can be separate from your politics. And how there is no growth with out struggle.
And as we talked, all I can keep thinking is that I can't form my words or ideas. How much I suck at talking now. How learning to act white (or survive in dominant culture) has robbed me of my self-assurance. How I'm so much better at getting others to talk, how I have forgotten what it feels like to make space for myself.
I reach out so much, pull people in, ask people to explain more, that I feel like I have long forgotten how to create/contribute ideas. Am I still an activist then?

I find myself feeling resentful of people who hoard connections, community, who wear it like a badge that I want to steal. I guess that is how power is made...

Breathe

2009-03-24T17:14:00.001-06:00

1.
I am sooooooo tired
Like soul aching, bone crushing tired
And all I want to do is lay right here
In the middle of this floor and dream

Cause see dreaming is all that’s keeping me going these days
Dreams of radical organizing and fun loving open minded people
Of sun and beaches or deserts and silence
Of a chance to feel - -connected- - instead of

Defending my heart, my mind, my decisions, my

Dreams

2.
I sit here on this call with my peers, who seem to be offended that I am counted as one of them
My body feels slammed with judgment, and I want to shut up, close off, leave

Deep down I know
Life should be about listening and love, compassion and knowing that
who you are is GOOD ENOUGH
It should be about interdependence… working and relying on each other

I want to be bigger than my feelings of anger
Calmly accepting my emotions, then letting them go
But my anger has burrows dug deep into my heart
it knows it can stay

3.
I breathe deep

I breathe deep

In the stillness of my mind I can let it all go
My yielding heart is the champion of my freedom from all I struggle
so hard against

I long for the day when I can bring this to the moment
When I can stop that deep burning, churning in the pit of my stomach
The rush of heat and sarcasm
The day when I can just

Stop
And breathe

The HERO Question

2009-02-25T16:14:00.000-06:00

I remember in high school being asked to write about who I considered a “hero”. It was a weird question to me and told my teacher so. In a society where we often assign the hero status to people we fear or who intimidate us, it never really made sense to me why anyone would WANT to be like someone who caused fear or intimidation.

Especially as a disabled kid I saw the hero status being assigned to people just like me just for living life. That or to people trying to cure us. And this is apparently still true with the Oscar’s awarding the Jean Hersholt Humanitarian Award to Jerry Lewis. Lewis said at the Oscars last Sunday - "For most of my life, I've thought that doing good for someone didn't mean you would receive any commendation for an act of kindness -- until now,". Umm, what? I think he’s passive-aggressively saying that it was about time for the world to realize just how “great” he is. So apparently “heroes” need people to tell them they are great.

Lewis should have no doubt how much people fear disability – I mean think he’s a hero, because comment after comment on the Associated Press article commended his “heroic nature” for abusing disabled kids on stage in front of a televised audience to raise money (based on fear and stereotypes) to find a cure for “suffers” of Muscular Dystrophy. People over and over mentioned how much he had improved the “quality of life” for those with MD. Which totally confused me. I think my quality of life would be better if I had job options, physical access to buildings in my community and was seen as a sexual being (worthy of love and sex) NONE of which the MDA telethon does. Just to be clear, a good quality of life can not mean sitting on your ass at home (or in an institution) waiting for someday someone to offer you a chance to possibly change who you are. I guess Lewis is apparently is a lot of people’s hero for trying to rid the world of beautiful diversity and making sure we stay in our houses so we won’t be pitied*.

With all this to recommend the hero label I just have never bought how it is a good thing. Although, I have to admit last week I came the closest I ever have to considering someone a hero. I’m in the conservative, “proper” Midwest and there was a woman (total rebel) singing at the top of her lungs in the shower in the woman’s locker room at the local YMCA. The other women looked bit distressed and tried to act like some lady wasn’t loudly singing as they got dressed. It was awesome.

*May 20th 2001 CBS News Sunday Morning “If it’s pity we’ll get some money. I’m just giving you the facts. Pity … if you don’t want to be pitied for being a cripple in a wheelchair, don’t come out of the house.”- Jerry Lewis
For other classic viewpoints from Jerry Lewis go to: http://thetroublewithjerry.net/jerrys-defamatory-remarks/jerry-quotes

Taking a moment to stop and think

2009-01-28T15:14:00.000-06:00

Sometimes fighting for something to change can feel like scraping your skin off in layers. It hurts, often not enough to kill the spirit, usually just enough to bring tears to your eyes.
I’ve been working (along with indirect support from others) to get the organization I work for to stop using the term “special needs”. To instead use the term accepted by the Disability community – Disability, Disabled, Disabled people.
How do I fight this? First 7 years ago I and another consultant wrote a letter the Board of Directors, which was scoffed at and ignored. Then 4 years ago all the youth in the project sent in comments expressing this desire to the staff of the org. Meanwhile I’ve had about a million one-on-one conversations with the staff about it. And I have been patient.
Finally the BOD this year approved to tack on “and/or disabilities”. It was kinda a victory except no one uses it still and have said they do not need to since most of the network in the Org doesn’t use it.

Since I was a kid I have clearly expressed that I am NOT a “work from with-in the system to change the system” kind of person. And yet to do essential radical activism work, gathering and supporting the next wave of Disability community activists I have to work in an org where I am the only Disabled person. Although this org’s mission is all about affecting change for Disabled youth, and Disabled kids are plastered all over their materials and most of them have Disabled kids, we somehow aren’t respected enough to decide what to call ourselves.
I feel like such a hypocrite and I am sick of trying to have to be diplomatic when speaking out about being oppressed. Especially in my day-to-day workplace.

After we die

2008-12-19T12:52:00.000-06:00

There are so many people in your life who claim to know who you are. That never really becomes an issue until you die. Especially if you were creative. Mt friend who passed 3 years ago was a poet. He defined himself as a writer. After he died his Mother decided to put his poetry together into a book. Now most of us might be horrified at our parent reading our poetry, let alone compiling it, but he was close to his mother and I had hoped that would be enough for her to respect his words.
The day the book came out I was so excited and then I sat down to read it. It included a prologue and introduction by her, all on how she saw her son. In all of her poems she added punctuation and, according to the versions I have of his work, she changed phrasing and took out/changed words.
While everyone else decided to just compliment the book, I confronted her on it. And she denied it.
I feel like a fool cause I wrote a forward for the book, but didn't demand to see a draft. I didn't know she included a poem that I co-wrote with him. I didn't know that she included a journal entry, titling it with my name that leaves me awkwardly trying to explain things that aren't anyone's business. I didn't know that I would have so much emotion around it.
It is something we ALL do - create someone's image through our filter of them. I never realized how bad that can be. I am left struggling, trying to figure out what is my "ego", my being attached to what I think is right/how I saw my friend and what, if anything, is wrong with what she did...

I feel silly for wanting to fight over something that only really matters to us, I mean it's not like my friend cares...

I just know if I die, people better pick posts from my blog as intros, better only spell-check my poems (and that is it) and that I hope I'm lucky enough to have someone who would take the time to actually compile and share my work.

Competition vs. Community - That is the Question...

2008-12-12T11:22:00.000-06:00

I was on a call with the Disability community discussing how to support Micah and Grace Boggs said (and I’m paraphrasing) - When people have an opportunity to rally around a person to reach their potential, then these people gain a sense of community. She also said she thought the university was threatened. Another comment put out the question, if universities were a business of education or if they were here to serve the community?
It made me realize that inclusion on a “real” level is a completely radical concept, especially here in the USA. It means that we would have to stop relating to each other as people to compete against and instead relate to each other just as people. I mean what would the world look like if our ego wasn’t the most important thing?
We could be honest. We could feel connected instead of feeling like we need to prove to the world that we are better than other people. We could learn just to learn, we could play games just to play, we could listen with out needing to have a personal response…

Competition vs. Community – this is really the challenge Disability brings to world.
I’m reminded of Taoist texts or even Christian texts on how to relate to each other. It seems like the message of egoless interaction is what religion tries to bring, but people have twisted the meaning so much that it has turned into charity, pity, and the direction to try and be respectful to the less fortunate (no matter how disabled, smelly or poor they may be).

In the Disability community we talk about inclusion in terms of access. Can everyone understand what is being said? Or, can everyone get in the place we are meeting? But I think what has disappointed me (and relates to my last post) is that we’ve made this into a struggle of individual accommodations, not based on inclusion, but based on not being an “undue burden” (which usually means do we cost too much or will we demand things be clear to the point where anyone can understand). We go around asking for accommodations, BUT only because we are “worthy” and won’t disrupt the way things already are.

What kind of movement is that?? What kind of society changing, radical struggle is that? It’s not. It’s buying into the things we hate, with a mistaken idea that if we don’t we will be left behind…

Fall from Grace

2008-12-12T10:33:00.000-06:00

It sucks when you feel let down by strangers. I guess we should never have expectations of others, but the past couple of weeks have been disappointing.
I happened to be flipping through a book of essays on Nikki Giovanni and found an essay on “handicapped parking”. In the essay she says, “If they can drive, they can take their chances along with the rest of us.” “Life seems so unfair lately to those of us who are ordinary.” “…initiate a march demanding designated colored parking spots, then of course, the militant gays will demand gay spots, though everyone who laughs may lay claim to those places, then white people will want designated white spots, then child abusers, then abused children, and damnit, there won’t be any spots in town where normal cars can park”.
My mouth was hanging open in shock by this point. Like disabled parking is about us being disabled and not about function/access. Obviously to the point in her life where she wrote this, she must not have known any disabled people. I also found it weird that it seems like she writes like disabled people aren’t also part of the community she identifies with…

The other thing that rocked my world this week was a few young disabled people’s reaction to my friend Micah who is trying to live in his college dorm. Micah who has an intellectual disability is attending his local university through a program called OPTIONS and wants to live in the dorm on campus. Micah and his family have done an extraordinary thing to begin to break down barriers in higher education, to make inclusion a reality. Right now, with the program Micah has helped design to go to college, he does not get credit or grades, even though some of his professors have said that he would have passed their classes. To live on campus is again helping to break down barriers and put what we as the disability community believe as essential (this belief in inclusion) at the heart of the fight for equality.
When his fight was posted asking for support, several young disabled people responded saying the school had a policy to only allow students receiving credit to live in the dorm and Micah shouldn’t ask for “special rights”. I was shocked. Policies have been used by institutions to hide Racism, Sexism, Homophobia, Ableism, etc. since there was a time when they were pushed to change.
I was disappointed, not that people may have differing opinions, but that it seems the same kinds of people are climbing to power in the Disability community. People who believe in individual rights/struggles, not a community struggle. I was disappointed that they chose to publicly put another disabled person down based on so little information.

Dear Nikki Giovanni

2008-11-18T15:29:00.000-06:00

I have a new Poetry crush and had to write her a letter (I'll see if i actually get the courage to send it). If you haven't ever read her - you have to check her out!

Dear Nikki Giovanni,

I’m Disabled and Latina
Although you probably wouldn’t notice it with just a look
Not until I moved like PoeTRy or spoke in RythEm

There’s so much I’d like to ask you
Like how did you know you were part of a movement when so much of your poetry is about being alone?
How did you create patience when opinions were changing and good people were saying things like, “There is no such thing as Racism”?
How did you know your poetry was about something on everyday nights when no one seemed to be listening?

Now 35 years later I hear the echoes of your voice
I love how your poems are like thimbles of truth, stringing together like clothes on a line
A tapestry of different shapes, sizes, colors, fabrics
Making life seem so simple, so tangible, so real

I am a Disabled, Latina activist and I am searching
Our movement, the Disability movement/liberation/struggle, is trying so hard to grow roots
And if we win, have Our way, society will be radically altered
What it means to be alive and live well, will have 500 new meanings

See, “us” and “them” is so much larger than one country or even one hemisphere
We are like veins in the body of life
Pulsing into every country, people, gender, color
Our roles have been cast for us for centuries – since before Jesus
We are the beggars, the untouchables, the sick, the different
And we want equality
….but lack the wisdom

That’s why I desire to talk to you
You, the observer of a monumental struggle for equality
Inspiring people, mirroring back the truth back into the heart of the struggle
Capturing it on the rebound and throwing it back in

PS. (I’d love to meet you…)

The Issue with Rights

2008-11-07T18:14:00.000-06:00

I can't remember the last time I watched so much political news. Watching Obama's acceptance speech will go down in my memory forever. I loved how he talked about all of our differences, not in terms of what tears us apart, but in what can bring us together. And when he said - Disabled and non-Disabled- i cried. I know Disability activists have worked with him long and hard to get him to take us seriously and it's awesome to see it paying off.
The day after the election was like Christmas. People were smiling, talking, and most important - feeling hopeful.
It was also the day I found out that the propositions in CA and AZ passed changing the constitution to define marriage between a man and a woman. Outlawing - and TAKING AWAY- rights already given. It was devastating. Having just attended my friend's marriage in CA to her partner in September, it seemed surreal. I met all these beautiful people, many with gray hair, tears in their eyes as they described getting married to their partners after 10, 20, 30 years of being together.
An ultra independent woman, I have always po pood marriage and I felt ashamed that day that I take this right given to me so casually.
I am torn between this joy in seeing change come to this country and grief that I live in a country that takes rights away from people.

Back in town

2008-10-07T20:04:00.000-05:00

So, it has been a bit since I last posted, I know. Life the past few months has been more about “going really fast and strong” and then “collapsing in exhaustion”. But after a trip home to the desert I’m ready to begin again…

I’ve been thinking a lot over the past few months about being myself. I have been living in a place which denies my culture and experience, which shuts me down through a slow painful numbing experience. I had a hard summer with people I love and big changes in my family. I somehow got to a place where I was just shut down. Just surviving.

In my past trip home my family took me on a road trip (since I will be gone for my 30th B-day). We went to the area outside of Sedona. Sedona itself has gone in my lifetime from a cool hippy refuge to yuppy/wanna-be new age resort studded city. Now it’s crawling with people, land rovers and giant purple houses built smack up against the buttes Sedona is famous for. I hate as people how we often love cool places to death. So our road trip didn’t go to the town, but the lovely untouched mountains that still exist surrounding it. I got to climb out onto one of the buttes next to the road and I just sat for awhile. It was beautiful and I kept searching in my head for answers to my reaction/tendency to shut down and blend in instead of stretching myself out to be myself. An eagle flew directly overhead and it reminded me of animal’s connection to the earth. So maybe it’s about reconnecting and spiraling out from there. The image I got in my head was of a petroglyph left hundreds of years ago on desert a rock of a spiral. Connecting in one point and letting yourself unwind from there.

So I’ve been reconnecting with friends who are finally getting over being annoyed at my moving and letting things be uncomfortable with others who don’t seem ready to be real, all in attempt to be true to myself. Back in the Midwest I’m trying hard to be my loud, creative, beautiful self.

Another Labor Day, Another Telethon

2008-09-02T11:27:00.000-05:00

This weekend marked yet again another Labor Day MDA Telethon. Last year I was part of a group who organized around it. Giving voice to the anger of the stereotypes (that we should be pitied and are not a “full person” unless we are cured) and voice to the hope of Disability pride and respect. We got a lot of feedback from non-disabled who were very angry and attached to this way of viewing Disabled people. I’m not sure if that was what any of us really expected as the final outcome.

I kinda hoped this year it would just disappear. I managed to avoid it until Sunday when my partner (also disabled) and I were in the store and a woman walked by with a “Jerry Lewis Muscular Dystrophy Association Telethon” shirt on. I felt my heart stop and then begin to boil. The first thing that popped into my head was Jerry Lewis’s statement that if Disabled people didn’t want to be pitied, then we shouldn’t leave the house. And then beyond angry it made me depressed.

I’ve been struggling a lot with my connection to community this summer. How we seem to define things in terms of what we oppose or are against. And so much education needs to happen to educate others on why we are opposed that it becomes overwhelming for me. As I lay in bed that night with these thoughts rolling around in my head I realized that maybe I could just skip it. Skip the opposition and anger and maybe instead come at it as what I am “for” instead. Being “for” Disability respect, dignity and pride is easier and leaves less room for the people attached to the Telethon to disagree.

When I think about the things which really make me angry about the MDA; that people have to agree to an invasive muscle biopsy in order to get anything from the MDA, that the Telethon puts a child on the stage and verbally abuses them in front of thousands of people by describing them as pitiful half-people who will never amount to anything, things that we would not tolerate as a society towards other groups of people. When I think of these things they directly fly in the face of respect and dignity.

The MDA’s other big fundraising time is in March and always catches me off guard. Maybe I’ll make a brochure for businesses on how they can donate to groups who actually support respect and dignity for Disabled people and are even run by Disabled people themselves.

Maybe it will be easier to organize “for” something, than “against”…

Ablism at the Movies

2008-08-04T17:47:00.000-05:00

There have been a few movies this summer which have just reminded me of how far we have to go when it comes to Disability Pride and respect. I refused to see "The Love Guru" due to Verne J. Troyer's character being the bunt of a ton of disability/short stature ablistic humor. But this movie seems to take it to another level, both in the ablism and in the response from the Disability community. Read below to see the issues and response. It made me feel better, a bit less victimized to see people coming together in action around it.
Also, stay tuned to Pat's site for updates on what happens at the meeting.

FROM: Pat Bauer, www.patriciaebauer.com
Trailers for "Tropic Thunder," a big budget summer comedy/action/adventure movie due out August 13, don't make mention of Ben Stiller's role as the lead actor in "Simple Jack" - a movie-within-the-movie that makes prolific use of the word "retard" and plays into hurtful stereotypes.
Created by DreamWorks Pictures, "Tropic Thunder" features performances by Jack Black, Robert Downey, Jr., and Ben Stiller as actors who are filming a war movie on location. Stiller's character plays Tugg Speedman, an action star whose fame is fading and who failed in his bid for an Oscar starring as "Simple Jack," a man with an intellectual disability who can speak to animals.

"Simple Jack" is featured as a film within "Tropic Thunder" in which Stiller wears an institutional bowl haircut and bad teeth. The movie within the movie has its own marketing website, featuring the "movie" poster slogan "Once upon a time...There was a retard" and the overall slogan of "What he doesn't have in his head, he makes up for in his heart." One of the fake "critics" of the "movie" on this marketing site critiques Speedman's performance as "one of the most retarded performances in cinema history."

While the studio may claim this is all meant as comedic reference to Hollywood films that starred non-disabled actors in disabled roles (Forrest Gump, Rain Man, etc.), lots of folks aren't laughing, including the 14.3 million Americans with cognitive disabilities, their friends, and families.

July 4th

2008-07-05T16:52:00.001-05:00

So I've been doing some thinking about the 4th of July. I'm a sucker for bright, shiny, sparkly things and have always loved fireworks. It was a holiday growing up that was celebrated not as Independence Day but as a lazy, family get-together and hang out to watch the fireworks day. In fact I'd say there was always an uneasy feeling around the "holiday" part of it. We always just set aside the thoughts that it was celebrating our domination...
But after spending my first 4th in the mid-west, I'm less sure I can ignore it. Flags adorned multiple houses and the fireworks were coordinated, not to classical music as I always had heard, but rousing pro-patriot/god-bless-america music. The patriotism piece was a little harder to ignore and I kinda felt in shock about it all. On the Border where I grew up, even with army bases in our city, there was still an acknowledgment of the messiness of it all. That it wasn't a clear-cut thing - for or against america. That is was a confusing subject - that we can't ignore the way things were, I mean we pay taxes and therefore support war and conquest done in our name, but on the border the line is more blurry between being real about that and also being real about the pain caused by taking land that was not ours.
Is there an alternative to the patriotism expected on the 4th. Could activists celebrate those in our short county's history who has ensured citizens freedom, like MLK, Malcolm X, Justin Dart, and Cesar Chavez? Can we get organized about it? Make it positive?

The most interesting thing the 4th has brought out for me this year is the reality of the complexity of who I am. I am a mixture of White, Native/Indigenous Mexican, and I assume somewhere in there a little spain spanish...Proof of love, perhaps rape and most definitely curiosity. Made up of communities who despised each other...with all this I'm not sure of my "right" to be pissed at the celebration of independence?

Needing a Lazy Sunday Afternoon

2008-07-05T16:21:00.000-05:00

I've been feeling a little run ragged lately. I took a trip home which was great, but so sad to leave. I went to a work meeting lasting 6 days {yes 6!} and am finally back to where I live currently. I'm having a hard time still after a year calling it home. It's been hard, and I'm not sure I realized exactly how hard until I went home. The second I departed the plane at home I had interactions with people that weren't awkward. I had food options with actual taste! And I got to be in a space where I felt energized and peaceful...
But now we are back for a few days and my partner is preparing for summer Law school...and I'm preparing for the silence which invades our home when he is studying 14-16 hours a day. It kinda freaks me out, but I'm sure there is a lesson somewhere in this that I need to learn.
I'm excited and a little intimidated to be heading out again in a few short days. I'll get to spend a chunk of time with community which is super exciting, but I hope I am rested enough to be present and real. There is time as an activist that I feel like I burn myself out just doing all the things I want to do...
Hopefully those I love will support me as I support them over the next few weeks...

We'll miss you Harriet

2008-06-09T16:27:00.000-05:00

Harriet McBryde Johnson died last Wednesday June 4^th and it’s taken me a bit to get to a place where I can explain why someone’s passing [who I did not get a chance to meet] affected me so deeply.

I’m not sure how I first came across Harriet’s book, Too Late to Die Young, but I do remember reading it. It was the first time I had ever heard an elder in our community describe what it was like to organize a protest where there wasn’t a mass of community [so much practical use for us less experienced activists!]. I loved the pretty much perfect descriptions of what it was like to travel to different cities and about being a chair user in a massive crowd, the perceived “hole” in a crowd. Perhaps most profound for me was her story of telling a photographer and journalist of the New York Times “No”. She had written a political piece on Peter Singer and they wanted to twist some inspirational crip stuff into it, and she said “No”. They tried to convince her, coerce her and wait her out, but she didn’t let them choose how her body and experience was going to be portrayed. In this day of crip life stories misused to inspire or strike fear and charities use of our bodies and experiences in raising money to change us, it seems sometimes overwhelming to draw a line in the sand about how you are portrayed. I had never ever seen anyone say “No”.

I think Harriet was amazing because she seems like one of the few adults, one of the few leaders in our movement, who connected with different generations of Disabled people. She straddled the political and cultural experience of being Disabled. She didn’t seem to sell out to “get ahead” and did things on her terms.

As I lit a candle for Harriet last week [traditional in my culture] I thought about how I could bring her stories to future generations. About how much they are needed…

(A great summery of her writings, etc is on CripCommentary)

Struggle, with love

2008-06-04T14:45:00.000-05:00

It is finally warming up in this land of perpetual cold. I’ve still learned to go everywhere with a jacket as the restaurants, etc now blast the AC back down to 60 degrees.

Living far away from friends and family has been an interesting struggle. No one is co-located so there are pieces of my heart everywhere really.

I’ve managed in the past couple of weeks to get in fights with like 5 of my closest friends and family members. I wonder if there is ever just a cosmic time where all the crap has to be shaken out so your relationship isn’t weighed down…
I’ve been giving a lot of thought to what I actually need to feel like things are resolved. For one relationship it seems that we just need to be able to take care of ourselves [we both are maxed out and not able to really be there for the other], for others it just seems like understanding is in order. My Grandma is picking a fight over stuff, but I think she’s just pissed about my moving. And for others where something actually occurred that pissed me off, I’m a little more stumped. I think in part it has to deal with cultural differences. There is a real advantage that I never realized in growing up in a place where your culture is on par [or sometimes more dominant than] white/dominant culture.

I remember when I was in college it dawning on me that most of my peers and professors had a completely different understanding of “respect”. I tried so hard to understand that culture that I almost lost myself, lost the way to relate to my family and long term friends. It took me years and a lot of soul searching to come back to myself. I carried with me from that experience some of the understanding I gained. It’s helped me a lot to understand interactions at work, etc, but I’m struggling how to bring that understanding to my now close friendships. It’s not really about one person being in the right when cultural misunderstandings happen, but how do you reach a level of understanding without one person bending to the other?
In some ways I feel like this experience really mirrors race/ethnic struggles that our country is still having.
On the way back from visiting a friend my partner [who comes from a different racial/ethic background] and I stopped at a rest stop and overheard a Latina mother correcting her children’s behavior. She asked them to explain what was happening and why, what they were trying to accomplish and told them that they needed to pay attention. I felt all warm and fuzzy in a way – like “Ah, interaction I understand” but my partner was a little upset. He was upset by her tone, thought she was too hard. Which was funny to me because it really bothers me that often [not always by any means] white parents either ignore their children’s behavior or yell/scream at them.

How do we choose to relate to those we love when their understanding of what is “appropriate” in a situation can be so different?

I guess I just feel honored to have a partner/friends who love me enough to struggle with me and to hopefully come to our own solutions.

Thoughts from the middle of the night...

2008-05-20T17:35:00.000-05:00

Do you ever have nights where you spring awake, blood racing and somehow although it’s like 5 in the morning your thoughts are wildly going in circles and you get yourself all worked up?
I totally had one of those nights last night. I have been invited to speak at a conference where the keynote speaker is a man who claims to have been cured from autism. Now, this is a transition conference for teachers, school admin, etc. and as I laid there in bed I could not think of a more counter-productive keynote speaker. To have someone not just coming from the medical model, but advocating for that model just tears me up. A whole group of adults that we rely on for support will get a big giant message that disability is an individual problem to be cured. I mean bummer man, seriously!
I know that almost all activist issues have people who represent the community who speak often to both sides of a debate. The problem is that most non-disabled people don’t even know that there is another side to the debate. That disability is beautiful. That it is part of diversity and accommodations and support can help everyone work better together.
I’m trying to decide just how radical I can be at this thing. The backlash against those of us who are disabled and proud can sometimes be extremely harsh and extreme. What can my heart take? What will be effective?

I’m always still surprised how the world insists on seeing us as victims and in need of charity or a cure. I spoke to my friend’s mom last night who is publishing a book of my friend’s amazing poetry. [He died of complications with MD.] She has had to battle the publishers every step of the way to acknowledge that this book is done in honor of his life as a disabled activist and not that he was a victim of his disability. [I personally think it’s a testament to my friend’s amazing activism that his mom “gets” it, gets that he was proud of his disability.]

I wish our voices were louder and brighter. That the “care/cure” people were not the main voices of our community. Perhaps then I might get more than 5 hours of sleep. hahahaha

Disability Culture...

2008-05-07T16:36:00.000-05:00

Disability culture to me is something I cherish. I can’t really remember when I first heard about disability culture, but I can totally remember what got me there. When I was a kid my disability was treated like something that existed in my body, but my family tried to promote that it didn’t define me. I remember going to cultural events in our community where my family would celebrate our roots, being Mexican, Native, Scottish and Brazilian was all part of what my family told me I should be proud of. We made tamales with other families, I went to my friend’s Quincineras and birthday parties. But in some ways there were things my family members and friends didn’t get. Needing adaptations to play games or sometimes even to attend made people uncomfortable and embarrassed.

Then I met my best friend, Marlin who was this kick-ass Disabled activist and believed in Disability pride and community. He totally blew my mind. Being Black he totally got the ethnic cultural issues that mixed in with disability issues, and he taught me how to be Disabled with a capitol “D”. A few years after I met him I had the awesome opportunity to teach a university class [as an undergrad] on Disability, identity and politics. I was then forced to read all kinds of books and information on disability, so I’d have cool things to teach. One of the things that fascinated me as a Disabled Latina was how disability is the “ism” all other “isms” tried to prove they aren’t. For example, women when fighting for rights would say being a woman or pregnant didn’t make them disabled, but they needed accommodations. Or immigrants fought hard to say they weren’t disabled, they just needed accessible formats and interpreters. The point is NOT that if you are a woman or an immigrant you are disabled, but that these groups actively went out of their way to not been seen as disabled by society, even though they sometimes needed the same things. [A great chapter on this is in the “New Disability History”]. It made so much sense to me as I compared my experience on SSI to my single-mother friend’s experience on welfare. How in my head there were millions of comparisons, but it took her awhile to see how they were similar.

For me Disability culture really came alive when I could compare and contrast it to how I experience other cultures I am part of. They make me who I am. I feel comfortable and “at home” when I’m with people from my culture. It’s so cool how they can just “get” certain things without my having to explain it to them.

I also think Disability culture is really important for the Disability community to embrace. I’m fascinated by the resistance of some – how uncomfortable it makes some people to be, not just “ok”, but “good” with who they are. What’s up with that? How can we advocate for what we need to exist if we can’t be proud and “good” with who we are? The history of Disabled people, our humor, and our community is all culture. Culture and pride is power in the faces of those who oppress us [keep us from having rights]. We can be a powerful community if we want to be.

Culture and Pride are new options for our community when it comes to activism. Before we’ve had the people who try to fit in, not make waves, suffer through it or the people who are angry, and demand change in an angry way. Culture and Pride means that we can come from a place of power, we are proud of who we are and do not need to be changed to be happy or “normal”. It lets us talk about our issues in a way where we don’t have to be angry or embarrassed. We can make Disability an everyday difference that should be accepted.

Dating

2008-04-28T17:35:00.000-05:00

I’ve been thinking lately about the question all disabled people come to ask – what are the pros and cons to dating disabled people vs non-disabled people. Now obviously it all really depends on the person – do you dig them or not, but I got to thinking about this question more in-depth the other day when I was talking to a friend. I’ve had some radical changes lately with my body due to my disability and I was telling my friend that I had no idea how people dealt with this stuff in their relationship when they had a non-disabled partner. Granted I know people can be great about things or a jerk no matter what, but in having a disabled partner they innately get how things can change one day to the next due to disability.

Over the years I’ve talked often with friends about their experiences dating other disabled or non-disabled people. I know when I’ve dated non-disabled people, they’ve been able to PA for me [assist me] in traveling which has been awesome and helpful, but to think of it my disabled partner does that too, it’s just a little more complicated. Hahaha.

But seriously, my family had issues when I told them I was getting serious about a disabled guy. I had this whole discussion with my Dad who went off on his worries about who would take care of me. I was offended as a woman let alone a disabled person, but he was seriously worried.

I’ve dated disabled people and non-disabled people and there is a definite difference for me. Perhaps it’s because I am so involved in the Disability community, politically, socially, culturally, but it’s totally part of my everyday life. When I was dating a non-disabled person, he worked hard to understand the issues and cultural perspective, but then a new angle would come up on something and he wouldn’t get why I was offended until I explained it. I felt like I ended up talking with him so much about disability issues that it became overwhelming along with working in it 8 hours a day. Now my partner [who is disabled] and I are able to just give each other those “looks” when we hear something ableist, etc. Interesting enough though is that we have to balance our passion for disability activism with our relationship – not make it our relationship.

Our biggest issue is more about our ethnic and socio-economic backgrounds which are totally different. I guess it all comes down to what you are willing to work out as a couple. The biggest lesson I’ve learned is to talk about everything….

Allies, what...?

2008-04-21T21:11:00.000-05:00

It’s spring, people are gearing up for the summer dashes across the country to connect, learn and dream with fellow activists and seekers. I seem to be having a lot of discussions with friends, my partner and on message boards on the role of allies in movements. And people seem mostly pissed. I’ve listened and read critiques from people on basically their discouragement with the fact that some “radical groups” are more accepted and tolerated by those in power. How angry they then feel when they [less accepted/tolerated groups] are not only ignored by those in power, but are also ignored by these more accepted groups.

And please, I’ve been there. Non-disabled radical activist groups being pissed when disabled people showed up and asked for access. Young people shut down by adult voices. Not only NOT seeing yourself reflected in these mainstream radical groups, but actually seeing their distaste in all your messiness you have to offer.

I’m a big believer in taking power [and hater of the word empowerment]. Not in a violent or even aggressive way [although not opposed to that], but in a way where we have the power to frame the discussion.

One of my mega pet peeves as an Disabled Latina activist is how different communities appease and coddle people or groups in power. For example, disability groups, made up of people with disabilities, completely kiss up to orgs like the ARC, Parent orgs, etc, some of whom consistently act as oppressors to our community. But because they hold the power, we act like their friends and are afraid to call them on their shit.

What would happen if we started framing conversations, conference sessions, blogs, etc from the perspective that we are all allies to someone. So, what does it mean to be an ally. How do allies help? What does that look like?

I tell my white friends all the time that their being an ally is SO important. They have the power to bring the message in a non-threatening way to other white people. That they NEED to USE that power.

We need to own our power to hold allies responsible by demanding they recognize that they ARE allies.

I just can't imagine what it would be like if a Center for Independent Living approached a Parent Info Center and said, "Hey, thanks for being such great allies. How can we work closer with you?" People would be offended at first - but then the whole relationship is framed in this way.

Other people can only give us what we ask for.

I continually seek perspective and patience in this and would love to hear what others think…

The poetry of change

2008-04-16T10:51:00.000-05:00

I am having a very pissed off day. A day of peddling backward and knowing it.
I am having a day which I would never wish on any activist…
Young people to tired to lead
Doctors who can’t justify paying for a PCA for a disabled person to be a speaker/teacher
And me taking it all way to personally

And I can’t figure out why
Is this where I have fought too hard for too long to understand how we can still be here?
Is it my feeling betrayed that people are rejecting the doors we martyred ourselves to spring open?
Is it feeling alone in creating a world which few seem to want, but a world which in my heart feels right?

I can not be a lone warrior in this life.

It’s not really a movement if I am alone

It’s not ok if I am so tired

So, what IS happening here?
Many people meet me half-way
Many people follow-through and show up
Many people believe in their heart that sharing “voice” is the key
So why am I crushing myself into a box of despair calling to take cover?

I think it’s this dark cloud of expectation that has floated over my head
It looks so light and soft and pretty, but then it moves in to smother the space.
I can’t hold it up, there is nothing solid to support, just air
and how can you control air?

2008-04-10T17:28:00.001-05:00

It always interesting to me how people deal with changes in their disability. I’ve always compared it to the emotional equivalent of “becoming disabled” each time something dramatically changes. For my best friend who had MD, every time he lost more movement he totally went through a grieving period. For my friend with fibromyalgia, she manages the daily changes of pain, etc, of her disability and has done A LOT of emotional work to be “ok” with wherever her body is at.

My disability has always been fairly stagnant, there’d be days of unpredictable pain, days when some body part would crap out and I’d deal, use more assistive devices, etc. But it was somewhat predictable and not a weekly occurrence. So one thing that I never expected in moving to the Midwest was a profound change in my body. Mostly, from what I can gather, high [or low] pressure weather fronts which seems to crush my muscles and joints on some invisible level as they move through the atmosphere. I now have about two or three days of intense pain and fatigue to contend with on a weekly basis.

It’s been an adjustment for sure, but it’s been helpful to talk about it. I’m doing research, becoming slightly obsessed with barometric pressure, and asking friends for tips on how they handle pain. I can not imagine going through this and not having any community to go to for support or advice. No wonder people get so caught up in the care/cure crap like somehow they just have to suffer until something is solved.

I’ve been really struggling with how to talk about it with people who care about me, how to talk about it with my disabled friends vs. my non-disabled friends and family. My disabled friends have been quick to understand and my non-disabled friends/family have been quick to get freaked out. Can I just share a helpful tidbit of advice? Freaking out at someone else’s change is never really helpful. Life is just messy. It’s why I love it and why it frustrates me. And the cool thing is that no one escapes its messiness. In the end, I keep coming back to the realization that what is happening to my body sucks, but, it is what it is. And I need to have the permission to both grieve as I transition to this new meaning of my disability and to be “ok”, knowing that I have so much disability community experience to go on.

What's in a Name

2008-03-25T18:42:00.000-06:00

There was a small media explosion over a recently re-opened, renamed institution. From an associated press article by Viki Smith; “To some, the title acknowledges history by readopting one of the many names previously held by the long-vacant, 19th century mental institution known most recently as Weston Hospital. [It’s now been re-named Trans-Allegheny Lunatic Asylum]

But others say the new owners of the massive Gothic Revival hospital have gone too far, disparaging the suffering of former patients and reopening wounds with planned events like "Psyco Path" dirt bike races on the grounds. The daily tours that began last week — which cost $10 to $30, depending on duration — focus on issues such as the evolution of mental health care, the Civil War, the Great Depression, even architecture.

"Not one person who has gone through this place and taken the tour has said that one thing was offensive," Jordan said. "It's not a freak show."

[see full article at: http://news.yahoo.com/s/ap/20080321/ap_on_re_us/lunatic_asylum]

After reading and thinking about this I realized that I was really bothered by both parties involved. The new owners, of course, but also the disability community. Now I don’t have the low-down on actual disability community reaction, but from the articles I’ve read it seems like people are pissed over the name – well, over the language issue.

What really bothered me with the owners was the complete playing-up of the horribly oppressive stereotypes of people with psychiatric disabilities – the total horror movie version, while, at the same time, attempting to claim that they are preserving history. Whose history are they exactly preserving?

Not disabled people’s history, that’s for sure.

I think it would be amazing if it was opened and instead of tours on what was done to take “care” of us and architectural history, it included a history of our people’s experiences in being imprisoned in these hellish places purely based on society’s failure to not be accessible and with it being unable to be ok with people being inter-dependent. It royally pisses me off that there is a piece of our history – a piece that needs to not be ignored – and it’s getting turned into a theme park version of a bad horror movie. And the disability community is bothered about the name?? I’d be happy to let the original name stay. The discomfort people [or at least some people] feel with the name is a tribute to the fact that our movement’s had an impact. But if we owned the name, like if we owned our history, it could be powerful in connecting the world with what our community has survived. This is when I wish I was rich and could by 51% of their business venture. Sigh….

want to share your thoughts with the owners?? go to:

http://www.trans-alleghenylunaticasylum.com/Guestbook.php

Dreaming....

2008-03-24T13:28:00.000-06:00

I wonder if dreams have meanings. Now, I know there are a ton of books and people out there brushed up on the art of dream interpretation, but as a person who has a ridiculous amount of bizarre dreams – I mostly want to wake up and say, “what the hell was that??” and move on with my day. But I had a dream last night that gave me this nagging feeling that it was something worth researching. I was in a hotel room in a strange city because my car had broken down. The manager of the hotel had built me a ramp to get into the room, very accommodating, but when I went to close and lock the door, it was made out of a white plastic sheet. There was a deadbolt lock attached to the plastic that I could lock but the plastic sheet door was flapping in the wind.

I have a sneaking suspicion that maybe it has to do with not feeling safe or something, but it doesn’t make too much sense for my life right now…
Any other opinions, thoughts, wild interpretations??

And just FYI my dream morphed [after alarm #1 for my partner] into rehearsing for a musical while getting my hair cut and dyed….
Mmmmhmmmm.

life in a minute

2008-03-12T21:48:00.000-06:00

There is a place where we all call home.
For some it is a place, others it is made by people, for others still it's the surroundings - like being surrounded by creativity or spirituality.
I've often wanted to ask friends what home is for them, but it seems lately like we have less and less time to just hang out - to have conversations where there is no point.
I think home for me is a mixture. There is the desert which my heart feels at home in, people who make it home no matter where I am, and the feelings that make my soul at ease. I often feel at home in little coffee shop venues where music is being performed. Sometimes home is an art museum or a protest. Sometimes it's just the dirt, wind and a deep breathe.
It has become so important for me to find "home" lately as I now exist in a place which I never thought I'd live. I had some family visit recently and it was funny and gratifying to have them scream in terror at the drivers on the road and comment on the differences in social politeness. But when they left on the plane for "home" I'm still here. So home tonight is this blog [which I've been neglecting a bit] and sleeping in my partner's arms.
Music is home, Poetry is home, friends are home, I can always be at home.

Thoughts on a Feb day

2008-02-19T21:25:00.000-06:00

The sun is hiding again

Throwing its fit by making the world dim

My heart is feeling lonely and happy in this strange land

And as usual as things go it’s not about changing yourself, but adjusting your rhythm to the flow

So, I’m letting my eyes adjust to the lower light,

My mind accept the naked trees and snow

and my heart tune in to what I might need.

Because it is wonderful to love someone, to adjust to a whole new world

but essential to retain dreams and the essence of what holds your spirit in truth.

I think I’ll have to suck it up and start taking risks

‘casue there are no easy outs when you are beginning.

Circles

2008-02-14T21:46:00.000-06:00

My life is spinning in these effervescent* circles
Seeing through the veil between this turn and the next
Although the spinning sometimes makes me sick
I just keep hanging on

How can I start in one place
A place so temporary, so simple
And somehow I keep returning to what I thought I could leave
there must be a reason why eternity is two circles joined

as a kid I hustled everything I needed
short and observant I’d watch and learn
but I hated the fear that encircled my life
neighborhoods ready to burst at the seems

but no one knew how to break the cycle

then the pale peace people came and they sucked me up
convinced me that I was all wrong
they turned me around told me act opposite
and everything would be better

I did, and man I spun myself around
Til the point my friends said I lost my soul sound
But I didn’t care
I had the answers to get out of there

And get I got
Joined the dominant culture in the classroom
But all they talked about was the life I came from
Cause they were going to help

And I had never learned to hate quite like that
I hated the man who beat down my mom
The men who left my friends with babies
But this was hidden hate, dominant culture hate

And so I spun again, went back home
But being disabled I don’t get to cop out
And I can’t live on *SSI
So I spun back to where I came from

Now it’s quiet when I sleep
No screaming, crying, gun shots
But I lay awake at night anyways
Cause they got me twisting in my brain

Did I do this right?
I’m doing it all alone
No one seems to care
But they all judge every mistake

I am so tired of spinning
The circles in life kicking my ass
I need my truth
I need to not lose my truth

*[effervescent – fizzy, sparkling, bubbly – something acting really excited]

*[SSI – social security income. You’re supposed to pay rent, bills and eat on $524.00 a month]

Bring food and water [if you have yet to caucus]

2008-02-05T22:55:00.000-06:00

So I went to go vote today, well actually to go caucus – totally different thing. We don’t caucus in the west, so I thought it would be fun. See who else shows up, the process right before my eyes. Fun right?

Well, to give the poll people credit, perhaps they didn’t expect 1,500 people to show up. But I joined them in undefined lines [after 30 minutes we discovered they were alphabet lines] and waited and waited. Now good prepared crip that I am, I brought my little seat cane to sit on in line. The only problem is the second I “cop a squat” I look like a hole in a very packed space. So then people stat ramming into me and trying to get through the crowd. I made it though and took my seat on the bleachers for……………….. 4 hours.

4 hours.

Yes 4 hours. So many people showed up that they needed 1 and ½ hours to finish registration and then we had to do the first count twice.

It consisted of restless children circling the gym with candidate signs, inciting cheers from one side and boos from the other. I somehow ended up encased in a circle of older ladies where we all sucked it up, stretched our asses when they went numb on bleacher seats and popped glucose pills as the hours passed.

The cool part was to see 1,500 people in one place cheering for universal healthcare, cheering for an end to war and cheering for a political change in the White House. Now that was cool. I think even worth my still numb behind.

2008-01-30T18:12:00.000-06:00

Its interesting to me how passion, interests and well, the things that make your face “light up”, seem somehow so pieced together most times. There are things about work and my personal life which make me so incredibly excited and then things that make me gag – (like coughing up booko bucks to get my truck fixed, [and is booko a real word?]). Normally I just count my self lucky if I can get up, serve my responsibilities and squeeze some creativity in to make me happy.

Even though I’ve been in the workforce for many years now, I still feel like I’m [in my head] still transitioning from school to work. We are given so few tools to really survive and make it in the world of work. For example, school sets you up to work really, really hard for a period of time and then there is a long extended break. Where with work, there is no set break and vacation time earned usually doesn’t even compare. So it’s more about pacing yourself. Learning when to slow it down and figuring out when you need to work really, really hard.

We are also given a pretty weird picture of how work “should be”. In the media, at college job fairs and in the promotion of “work” by the numerous entities [groups] that help people find jobs, they all talk about that you will either love your job, or hate it. They never really say that on most days it will probably be a little bit of both.

We seem as humans to create this “all or nothing” approach to things. And then we distance ourselves from it. So, then when you find yourself in the middle of it all, you can’t understand where all this complication came from – and it makes us feel alone.

I read today about ADAPT activists organizing in MI to educate and share the disability perspective on the ethics [if its right or wrong] of what happened to Ashley X. [See FRIDA – see my links]
Its seems to be valued [to be seen as good] if nothing is personal. Colleges and Universities treat a lot of things like this. But again, in the end, it makes us feel alone. Cause sterilization is personal, work is personal, life is personal. Really a lot of the things we do to be part of society/community is personal cause we are trying to figure out how we should act, think, feel about issues and situations. I think it’s really brave to share how and why something is personal. It is needed to teach us how to survive as an activist, student or in the world of work. I know I’m still learning how to be “ok" or not “ok” with where I am at and learning how to figure it out.

Open letter to the repro-justice and women’s movement

2008-01-22T20:07:00.000-06:00

Today is the anniversary of Roe v. Wade, which said yes, a woman should have the right to choose what to do with her body. However, from what we can see lately in recent stories of parents advocating to remove their daughters uterus [Katie Thorpe], or the Ashley X treatment – removing all sexual organs [including breasts] and giving the young women hormones to stay small and manageable “like a child” forever, we don't all get a choice.

As the feminist and reproductive justice movement celebrates today “choice” there is clearly a community of women left behind.

By society’s standards, a disabled person’s choice to have reproductive rights is up for debate – for male, female and queer disabled people. Disabled people are not only denied reproductive rights by health professionals and parents refusing to acknowledge sexuality, but also by the reproductive justice movement which limits access with inaccessible clinics and lack of accessible [both physically and cognitively] materials and contraceptives.

As a female I want to celebrate this day. As a disabled person I find myself a bit angry and conflicted. While people choose to abort disabled babies based on ableist fears and women and girls are at the mercy to be sterilized I want to be angry at this movement which left us out because women back in the day did not want to be perceived as “disabled”. But what about those of us who are?

We ask our judicial and congressional bodies to make rules to help us as a country treat each other better. We ask these mostly white, non-disabled, straight, upper-class males to legislate rights, equality and respect. We seem to have forgotten that it is at the - start, middle and end - our responsibility to change ourselves and our community first. Laws are a tool, not the essence of a movement. Too often we as activists get lost in bringing our case to Washington D.C. get the rules to create equality from congress and then “just” decisions making sure those rules stay in place from the courts. But something gets lost when we say that the work is done there. Its not just about enforcing these rules in our communities, its about creating space for growth and change for ourselves and others. And that my friends, means integrating new levels of complexity into our answers. It means opening up the movement and starting again.

Letting go

2008-01-16T18:21:00.001-06:00

Judgment is an interesting thing.
Just take all the millions of commercials and ads we see everyday. In a way each one passes a judgment. How we should look, how we should act, what we should smell like, what we should eat, how we should “control” our bodies, on and on. Most of us don’t pay much attention to these ads, mostly cause we’d just exist feeling like crap then.
But what about “real life” judgment attacks? I know everyone can probably relate to family passing judgment, about what you say or do, where you work or who you love. How do we deal with judgment in a way that we can process it but not make it part of who we are?
I had a complete stranger yesterday, who said he wanted to help/volunteer to help my work, tell me for an hour in 20 different ways how much he thought what we did sucked. Yes, seriously.

I think there are stages to anger – like there are to grief. First I thought it was funny, but then he branched off into other areas, and then I was confused. But as what I felt were clarifying comments seemed to pass him by [he took no notice of them] I started to get angry. I think for anyone one of us which tries to work in stuff we believe in, we often pass up better paying gigs to do what we do. So, was I feeling entitled to respect cause I work my ass off for not a lot of pay?
I ended up just feeling depressed about it for awhile, but in the end, I do what I do cause I believe in the truth, my truth of it. Not because other people will always like it or agree with it.

It is so hard sometimes validating [sticking up for] your heart. Sifting through all the judgments we receive can be like a minefield. Sometimes they may have a point but most times they don’t. I guess the trick is once you decide a judgment is crap being able to let it go. So, deep breath – letting it go!!

New Years Resolution

2008-01-09T21:14:00.000-06:00

I had a chance to go to the national Civil Rights museum this past weekend. I was so incredibly excited.
There’s a big difference between the history of our ancestors; those passed who carry the history with them and left it in books, letters, music and the history of us; the ones who carry it with us in our thoughts, dreams and memories. It had a great section on the history of our ancestors. They showed different points of views and pictures of lynchings – the horrible things we have done to each other. While the history of us – our parents and grandparents was different. The protests were covered, but the intense organizing and intentionality of the movement was lost. It seemed like pure sensationalism with an abrupt end when MLK was murdered. Malcolm X and the Black Panthers each got one board in the hallway. There were no opposing views to MLK, no other thoughts or successes than what he brought about.

Now, perhaps I view this too much like an activist, but it makes me sad to know that kids going through this will not really get a taste of how deep, how intense and how messy fighting for Civil Rights is/was. It got topped off for me when they told me the reason that the bathrooms weren’t accessible was because the building was built in 1994 and they were retrofitted. (The Americans with Disabilities Act [ADA] was supposed to be already in affect by then.) But the real thing that pissed me off was on the one wall where other Civil Rights legislation was posted the ADA was described as being passed after 2 years of advocacy. TWO years. Two years. 2 years! Uh, more like DECADES.

For me to go to a museum describing one of the most powerful movements in history, to see it fall so short of bringing the real fullness of the struggle to light was crushing. This should be the place we could go to be inspired.

Maybe we just need to make a museum for activists. The history of strategizing, of swallowing setbacks that inevitably happen and keeping peoples hopes and spirits going in the hard times. Not just the successes neatly wrapped up in cellophane on display. And while we’re at it can we have a civil rights museum which covers ALL civil rights struggles, what they fought for [or are fighting for], commonalities and differences.

This is my New Years resolution I think. Maybe to look for the little things, the extraordinarily important things, like how movements keep going, what keeps passion alive and to try and not let the wisdom of the recent past slip away or get smothered in a single agenda.

2007-12-31T18:06:00.000-06:00

Expectations are funny things. Especially around the holidays. Some optimistic part of myself keeps thinking how cool this year will be... Families will have good attitudes just because it would be nice . Everyone will want everyone else to have a good time, because, wouldn't that make the holidays fun and happy! Instead everyone seems a bit depressed and totally stuck in their own stuff. As my good friend put it, "Part of you wants to never deal with these people again. But then they'll say something or do something that makes you want to get to know them just a little bit better." And I think that sums it up.
So now with the holidays past here comes - New Years. New Years. The "social pressure" holiday of the year. I can remember having anxiety about this holiday since I hit puberty. Like somehow you didn't have good friends, weren't young and cool, unless you were surrounded by people celebrating at Midnight, [one night a year]. I've been able to make that happen a couple of years, but more often than not, I'm home toasting goodbye to one year and welcoming another all on my own. Most people I know hide out on New Years - people drinking and driving, the lack of accessible transit running late enough, etc, make it not very practical. But those of us who do chill at home seem to approach it kinda in an embarrassed manner. I say it's time to take some pride in celebrating alone. Here's to being the Lone Wolf, the Rebel, the uh well, something else cool! Yea for us!
Oh yea and Happy New Years. :-)

2007-12-27T17:56:00.000-06:00

I recently moved to the mid-west and have been in culture shock for a few months, [hahaha]. Today I went to the post office to mail a package. I was in line when I noticed that one of the clerks start to repeat himself with a look of panic on his face. The man facing him was quiet and you could tell he was not understanding anything this man was saying. From the look of the man I assumed he was Latino and probably a Spanish speaker. Now being from the southwest, I am used of someone on staff speaking Spanish. Especially at a post office [or any agency serving the public]. But the man behind the counter just kept repeating himself. I was totally conflicted because although I'm Latina, my Spanish usually sucks compared to the next person. But I had forgotten that I'm now in the mid-west. Finally the employee next to the one speaking to the man broke in with - Hablo espanol? [Ah! I felt relieved, here's the person to help communicate.] The Latino man obviously felt the same and launched off into an explanation. But then, to my shock, the man just told him in English the same story. The Latino man, obviously embarrassed, just said "OK" and left. Now me and my crappy Spanish understood most of what he had said and I felt horrible. It was a simple issue and probably could have been resolved.
If it was a disabled person facing an access barrier, I would have been all over it. In it. Whatever it took to be supportive. But in this situation a different cultural situation, I froze. I think being Latina, [my parents speak Spanish, but chose not to teach me so I could "assimilate easier" (total crap, but thats another story)] I have internalized oppression due to not being fluent in my family's native language. I basically got stuck in my own crap when I could have helped someone out.
Funny how one cultural home can teach you how to "step up" in another. The fearlessness I've learned when it comes to disability issues has to be translated to Latino issues. I think like many multi-diverse crips, I have found more of a "home" in the disability community. I mean it's not like Latino culture looks at disability in a great way. And although the Disability community tends [at the moment] to be led by mostly white people, I seem to be able to deal with that better. I'm not totally sure why? Don't get me wrong, I've had many a conversation about racism in the community, but ableism in the Latino community just seems way more overwhelming. Perhaps its because it has to deal with my family? I'm not sure. I'll have to think more on that... I will however extend next time a simple - Necesito aydar? [Need help?]

2007-12-13T14:08:00.000-06:00

I can see why the change of seasons inspire so much poetry and expression. Watching trees and plants bend and swerve and sometimes break under snow and ice is a humbling experience. As a society we seem to do our best to ignore that there is a rhythm to things. That "production" is the key to happiness on a personal, family and societal level. Maybe that's what gets us into so much trouble. Because even in our amassed American society we are made up of cultures that do acknowledge the rhythm. In the case of the Disability community many of us can't ignore it. If we took the time to be less "productive" and made the choice to be more in tune with life, nature, our bodies, would our economic power really come crashing down? It seems to me that we hurt ourselves more than help ourselves by thinking we have to be going full force all the time. Yet, even as activists we hold this to be true as well, I'm not just talking about the business side of things here. I keep talking to my fellow activists who are constantly bemoaning "all the work to be done". But for us, "all the work" really means all the systems [and really all the people] we need to change. And yes, that work is real, but it is with PEOPLE. There is something to be said for timing and for keeping our own passion alive. I'm the first to admit that I often keep barreling along despite my natural rhythm, but what if I took the time to let the snow melt away. To wait for the sun. Would things stop changing or getting done? I think as activists we are really, really good observers and extremely patient. Because most of us will talk about the tipping point of when someone "finally" got it, or things "finally" changed. But I think that those moments are really the rhythm of what we do. Is there a way to relax into that or to appreciate it instead of feeling like we are spinning our wheels most the time? I think that maybe paying attention with grace to the rhythm of change for ourselves and others could really be helpful. Its not defeat, just something bigger and ultimately more powerful than us. Rhythm is inspiration and hope and patience [and frustration] all in one it seems.
Just some thoughts this winter is inspiring in me...

2007-11-12T11:48:00.000-06:00

So, today is Veteran's Day. It seems like a good day to reflect on this war we continually fight and the people who are dying on both sides. There hasn't been much action on the part of Congress to impeach Bush and Cheney or to have a solid alternative plan that people can rally behind.
I kinda want to raise a battle cry of my own, to somehow create space for people really to talk about what's going on. I read a great article written by Grace Boggs who pointed out that we have these same rallies throwing out the same slogans and political criticisms, but no one really has time to talk with other activists - to dialog and create a different plan for our country. That point really struck me. As an activist I have attended hundreds of rallies and protests. Rarely though do I ever see them as a tool for activists - mostly they are used to "show" those in power that people care. I'm not sure protests and rallies have the same effect as they used to. I'm not sure if public opinion is any longer much of a threat to those in power. So what if we did follow Grace's idea? Used rallies to have discussions, to share art and poetry - the emotionally reality behind all the issues. What if we made it more for "us" than directed to those in power? Could building community be more of an answer than demanding accountability from those who will never answer?

movin up

2007-10-30T11:36:00.000-06:00

As I seem to move up in the world from worker to more middle manager [for the minute anyways], I've been thinking about what makes a good leader.
It seems like everyone I "see" leading is really self involved and arrogant. Like they have all the answers and you do not. I don't really understand how people think this will create change. It seems to only create a suppressed order.
I always swore I would never lead like that. That I would be open, humble, supportive and consistent. And for the most part i think i have been. But it's been interesting. those I work with who are deemed with out as much "power" as I, feel like they have THE power. Yet those with more "power" than I treat me less than my other middle management peers. And the weird thing is that more outside people [admin assistants etc] model the treatment of those with more power than me. So if i do not excert myself over others, then they feel the need to excert themselves over me.
How do you combat that? Or do you? How do you handle condescension from those in the work world "lower" than you. Is it different than those deemed "above" you?
I believe in the power of one. I believe that one person can influence the culture of an organization. But as i look around searching out someone who has done it, i'm not sure i can find one?

The inspection of Culture

2007-09-21T18:14:00.000-05:00

I sit quiet
Beyond the fear of shame
Beyond the tears of anger
Beyond their assumptions
I sit quiet

And in my quiet voice I laugh and try to explain
What they want to deny
They want easy to digest answers
To remain the defenders of “culture” to the world
But this is a culture that is soft and rough and a little fuzzy
It is embraced and loved and feared
Birthed from pride and connection
Fed by truth
And they want academic definitions
And they want it to fit into their box

But when has disability ever “fit”?
We do not fit into everyday life,
Not into people’s assumptions of happiness and joy
So why would we contort [bend] ourselves to “fit” into the box now?

I’m sorry I don’t bend that way.

I splay open in love, in heart, in trembling limbs
I dare to grab hold of the beauty which I am
And fling it out for the world to behold
I see/feel/dream of the beauty in the disabled - person, lover, poet, activist, dreamer,
Community
And those connections grow despite the fear
Because we are afraid to declare our community’s culture too
Cause it leaves us once again under the microscope of suspicion
The endless subjection of evaluation
We are left in conversations like this
Quiet, trying to figure out how to explain disability culture

How do you explain love, courage, tears, hope, pride, anger, connection, history, art, values, a common experience?
It is none of ours to hold
Not one person can fill in all the blanks
Everyone has their own answers
Sometimes vastly deviating from each other
And isn’t that culture?
What holds us together even when we want to split apart?

Maybe the question really is – What makes them worthy to hear about what makes us strong?

-----------------------------------------

So, from my beautiful poem you can see I had a very strange conversation with some non-disabled, academic, “important” people about ---“What IS Disability Culture” hmmmm……???

And I sat: umm, it’s what keeps me going each day when ableism rears it’s ugly head, when I hear a young person first “get proud”, when I know that there are certain things my disabled community member will just “get” no matter what their political leanings.

But they just wanted to know if it was our primary identity. If it was passed down from generation to generation.

Their analysis and I quote --“So according to some common elements: generations transmitting knowledge of behaviors, institutions etc. to guide social actions within the next generation, that can preserve the group, disability does not fit the traditional (anthropological, sociological) definitions of what “culture” is.”

So we don’t fit. I think we do, but they don’t. What else is new?? :-)

new new new

2007-09-08T15:40:00.000-05:00

So I'm learning some new things about the midwest. They drive 35mph everywhere - will cut you off and turn like you do not exist. There seems to be meat in everything. Every time i've tried to order something with just vegies - like an omelet, i think the cook in the back feels sorry for me and slips in a little mercy meat. Haven't got a pure vegie item yet.
They seem to play a lot more country music in stores and restaurants than i ever heard in the Southwest...
But, people also seem surprised that you want something in writing when they have promised. and people pull your new trashcan off the street to your carport for you and return items to your yard that flew off in giant storms. People expect you to be courteous and that's different. i have to say i've responded a bit with this positive reinforcement of expected good attitude.

It's been 2 weeks and I'm missing my friend Rach who drove out here with me. I miss her "western" behavior. Loud laugh, sarcasm and jokes and comebacks to odd situations. Like when we first got here and ate at an Indonesian restaurant, this older white woman asked her [she was in a t-shirt and skirt -- nothing like employees were wearing] where her group was sitting. Rach just looked at her and said "HUH" all loud, and the lady was all surprised and said, "oh, you're a customer". I butted in from the table across the way "what, BUT you're BROWN, so you must work here!". We laughed our asses off and maybe, if we're lucky, that lady will think twice about assuming things.
Ah, good old western justice.

Who's responsible for the burden of pity?

2007-08-30T21:36:00.000-05:00

I wrote an op-ed to the AZ Daily Start last year which won some mighty fine and nasty letters and comments. [see op ed below]

I’ve been thinking lately about this need for people to have the “less fortunate” in the world. The “less fortunate” seem to serve as some measurement - a “point of no return, where things couldn’t get any worse”. And people get hella pissed when the “less fortunate” argue about the “help” they are receiving. It’s an old story with disabled people usually winning spot #1 on the “less fortunate” list. But we’ve had/have lots of good company. I remember working for a Quaker organization and hearing about the mission trips they would take. Building latrines in some other country and I often wondered what people there thought of these American’s building bathrooms. I wonder if they were puzzled or even pissed about bathrooms being built, but no one asking what they needed.

I think “help” is a lot about assumption. As disabled people we live in a world full of non-disabled people who think they understand what it means to be disabled. Thanks to every movie where we are either cured/a burden/or die and media portrayals like the telethon we really don’t get a chance to talk about the reality of disability. How we define it and our identity. Our identities of course being a community of people who want respect, access and acceptance for who we are.

But what about the Disability Community’s response to pity? It seems like the burden of pity is often put on us from those who want to help us, or people/groups we call allies. I’ve seen so many advocates and activists even say, “well, they mean well”.

Because we are forced to rely on systems which make us beg, we tend to react to allies in the same way. – we can’t piss them off or they will not give us what we want.

When does the power structure switch so parent orgs, disability specific organizations and others listen to what we want instead of this assuming? I think it’s when we make them listen. It’s when we start addressing the “little things” like what they call us [I mean what’s up with “special needs” anyways?]. It’s when we choose at certain times to put pride and culture first, instead of always focusing on access. It’s when our movement goes from individuals fighting for individual rights to a community fighting for community pride and dignity.

We all get this in our heart of hearts, but can we do it? Can we commit to challenging power to create respect for our community? For US instead of I, and what does that look like? Can we accept the disability identity and move beyond “physical disability” “cognitive disability” and all the other labels to – just “disabled” [and not worry about what people think you are]?

I think looking at our own stuff is hard and it is powerful.

Disability Pride! Disability Culture! And Disability Power! Much love to you all on this “burden of pity mda-thon-day”.

OP ED printed in AZ Daily Star 9.06

2007-08-30T21:29:00.000-05:00

Is Charity the Answer?

Continuing another year of outdated tradition, this year’s Labor Day was host to longtime charity event the Muscular Dystrophy Association [MDA] Telethon. Protests over the past 16 years to respond to the Telethon have also become part of this tradition. These protests are led by people with disabilities who are fed up with the telethon continually portraying people with Muscular Dystrophy and the disabled as pitiful. The Telethon is one of the largest media events with actual disabled people on the screen, and they misrepresent what life is like with a disability.

Jerry Lewis, the host of the MDA Telethon has been quoted describing people with MD as “half a person” and has said, "My kids cannot go into the workplace. There's nothing they can do. I'm begging for their survival." Survival is not a “cure” for our disability, but instead survival is about jobs, dignity, independence, access to technology and civil rights.

Some readers may ask; but what about all the money the MDA raises? Doesn’t that money help lots of people? People give the MDA money to fix an “individual problem” which in turn lets everyone off the hook. The doer decides what they’ll give while the receiver must not complain and humbly say “thank you”. What does that do for empowerment and self-determination? The MDA does not support the real things people with disabilities want such as, independent living, equal rights and respect from their neighbors and peers. This assumption that money given to the Telethon can help, really shows the “charity mentality” that the Telethon has been successful in creating. That assumption is people with disabilities are victims of disability and need a cure in order to be a “whole-person”. This undermines the disability civil rights movement and implies that people with disabilities need a medical solution to their “problems,” as opposed to needing a more accessible society. The disability rights movement sees disability like any other difference – like sex or race. Being disabled is neither good nor bad; it’s just part of who you are. The disability community believes that our problems or oppression come from disabled people trying to function in an inaccessible society. Only a change in society, like making things accessible for everyone, will make the problems and issues that people with disabilities face better.

Other arguments that often come up in response to criticisms of the MDA Telethon are about what we in the disability community call the “magic pill” question. The Telethon leads society to believe that all disabled people really want is a magic pill to cure us of our disability. Which we would want to take, right? Believe it or not, most of us would say no. As a Latina and a woman I would not take a pill to be a white man, even though I would face much less discrimination and my life would be easier. The idea of a cure sounds absurd when applied to sex or race. Being disabled is part of my identity as much as anything else.

Are charity organizations raising money for a “cure” really the answer or even appropriate in a day and age where people with disabilities are organized, working toward civil rights and speaking on our own behalf? Instead of validating organizations that degrade disabled people, society could offer a platform for the many civil rights violations people with disabilities face and support one of the largest minority groups fighting for rights and dignity. Help to free us from this burden of pity!

Naomi is a proud disabled person who works to create space for people with disabilities to frame discussions about disability cultural issues.

The secret ploys of moving companies

2007-08-30T19:20:00.000-05:00

I just moved across country. So, FYI for all my friends out there - U-Haul has a lot to be desired. You pay a ton of money and are left with a truck that needs a squinty-eyed look and a prayer to make it. Actually it was kinda funny. We were driving in the middle of nowhere NM when my friend driving the truck does our emergency ring on the walky-talky. It was a stretch of land so open and empty that all i could see in my 10 mile view were power lines. I thought, "she couldn't want to pee out here!??". I pulled over and it turns out that the driver side mirror flew off. she did this hilarious imitation of it waving side to side before it took flight. we found it [luckily it didn't hit anyone] and of course called U-Haul's emergency hotline [of which i payed good money for] at the next town we reached. well, apparently their road-side assistance couldn't fix pieces that fell off the truck and the store they told me to go to, was baffled, because they couldn't help us...and neither could the other 3 stores in the city.
So, royally pissed as i was, i hauled out my trusty roll of duck tape and taped the sucker back on. i sweet talked a guy at the gas station to lend me some clear tape to tape the mirror part and i happened to have a mini mirror in my glove compartment that i tried to angle and tape just right, so she could see -something-. in the end i pretty much had to drive for "two" over the next 900 miles. changing lanes when it was clear for both of us.
so, we both made it in one peice. MY 10 YEAR OLD TRUCK made it just fine. i have a fight coming with U-Haul.
anyways, it's a whole new world here. it's cloudy a lot which is different [and oh yeah trees and grass, oh my]. i am surrounded by boxes, and need to look up the nearest recycling center. But i'm here. :-)

2007-08-30T19:09:00.000-05:00

I was watching this documentary the other day on the 60s and it occurred to me that the "struggle" every movement faces is in essence the struggle to not lose hope. when it comes to radical change and revolution i think it is the responsibility of "leaders" to inspire hope and new ideas and the the responsibility of community leaders in the movement to not let the hope die.

while we seem to have many leaders in the movement fighting to keep hope alive [i count myself as one], we do not have the leaders to inspire hope or new ideas. those we keep looking towards [like elders] seem to just not "get" it or pull out the same stuff about access or rights.

We will be stuck until someone dares to go beyond the mantra of "wanting what everyone else has" to really talking about how our cultural values can radically change how we as a society value productivity, beauty, what it means to be alive, etc.
You connect to someone's oppression to create community. but then the next step is to help them explore how disability culture can radically change what we accept as reality. That's a revolution.

This entry was actually a response to a blog my friend Joe wrote about seeing Rage Against the Machine perform. To read my friend Joe's blog go to:

http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=25097324&blogID=293666980

movement or movement

2007-03-06T14:17:00.000-06:00

so, i'm feeling all disgruntled worker, which i can't even imagine how many blogs are filled with people complaining about work. LOL
i often wonder about my choice to work in something which i am also so passionate about. can you be part of a movement and help build a movement while also being paid? this has to be a question many activists ask when smacked down for being too radical, told to do something against their values etc...
I swore when i was younger that my work would be something where i was at least once removed personally from the "point" of the work. But then fate had other ideas.

There's this Buddhist idea of letting go of attachment. Can you be an activist and not be attached to the outcome? For me it seems like the outcome is is what lives crystal clear in my mind - it is what keeps me from giving up. So how do you hold vision and then not be attached to it?

2007-02-18T23:09:00.000-06:00

i'd like to say this weekend has been relaxing and anonymous and full of renewal. but it's not.
i've realized that originally i thought i was just depressed, but now i realize that really, i am angry.
there should be activist support groups or something. for when you wonder if you are selling out.

what does anger have to do with being an activist? a lot of older advocates speak of anger as the end all, be all, the "driving force". "...can't do anything unless you're good and pissed off."
I think really that anger has way less to do with it than feeling connected. there's this place in my gut where i can be connceted to a cosmic "timing", if you will. A place to know if it's time to fight.

It seems in my life right now that shifts are happening to put me back where i feel like i started from. Where i began a journey to create space for myself and balance. and after working so hard i'm left feeling angry to be back here, but more than angry, disconnected from that place, the wisdom.

i was IMing with a friend tonight who was telling me stories of God and timing. Perhaps it is all about patience...
i guess i have little option other than to wait and see :-)

fresh start

2007-02-16T19:05:00.000-06:00

I am feeling like I need a fresh start in many ways. i'm having that burnt out feeling that sometimes we get in life where I just want to lay down, go to sleep, wake up and feel like I've got what I need.
It's been a bit of a depressing day, and yet, I guess in the end it's all OK.
I feel like there is this mystic cord which holds me to what makes and keeps me passionate about life. It's feeling stretched thin, and wobbaly. [is that a word?]
Is it this new found snow that i've been subjected to this past week? Is it missing friends, those who've died and those who've moved on? Is it the activist community that i feel all at once part of and alienated by?
not sure....
Fresh start??