A beginning that is a long time coming

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

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

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

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

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

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

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....)