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July 29, 2014
by Lillibeth Navarro, CALIF Executive Director and Founder Good morning and thank you to Gwen for inviting me to be a presenter in this awesome conference. On the subject of stigma, I’d like to start with a comment I got from one of my non-disabled sisters one day as I was spending the weekend with her. She blurted out this comment as I was experiencing extreme aggravation with another late pick up from a paratransit service provider.
My sister said, “If I had your disability, your husband, your job, your transportation and our adopted sisters, I would jump in the river!” I laughed at the comment as there is really not much of the LA River I could jump to! Plus I knew of course that it was actually an expression of caring from a sibling utterly aware of the struggles and difficulties of all those categories she listed but also from a sister amazed at how I cope with all of them. I never forgot her comment and I have used it as old thinking background in a flyer for a peer counseling program at our center.
She mentioned my disability—actually my multiple disabilities from polio and all of its consequences and implications on my life; she mentioned my ex-husband who was a man with mental illness she never got along with; she mentioned my job as a disability rights advocate, activist and executive director of a center for independent living serving the disabled of Central Los Angeles; she mentioned my transportation, specifically designated as paratransit services for people with disabilities and our adopted sisters with disabilities living with me. Each of these categories mentioned was stigmatized as it all was defined by, characterized and associated with disability and its negative connotations. My sister who is my dearest sibling has been a very close partner in the difficulties as we were growing up and intimately witnessed many of my struggles and as a result became a staunch supporter. Still, the experience overwhelms her.
Stigma on many different levels:
As a person with a physical disability, I have experienced stigma from when I was a baby. I was “the poor, disabled one” who was always left at home and introduced as “the wheelchair girl” as I was growing up. I was always asked to “move aside” because I was “occupying too much wheelchair space”, I was and still am conveniently objectified as the “fire hazard” clogging emergency exit lanes without a thought as to how to safely provide me with my space and actually rescue me and my wheelchair in a real emergency; I was the one who always had to stay home when my class had to go on field trips; the one left at home when they went shopping; the one left in the house while everyone was downstairs playing in the yard with the other children in a very inaccessible vacation venue. As a teenager I knew the pain enshrined in the song “At Seventeen” when love was meant for beauty queens. When it was time to take the Philippines’ version of the SATs, I was given the test an hour and a half late because there was no physical wheelchair access to the testing room so they put me in a room by myself without giving me the hour and a half it took them to find me a place. It’s even a miracle that I passed and got to college!
And then when I got to the area of romance and the dating stage, my ex-boyfriend and I experienced painfully negotiating the inaccessible environment, getting curious stares, being thrown lose change at, getting shooed from a wedding boutique store. After we were married, we experienced discrimination from family doctors who thought it best for us never to have kids; and from counselors who always adviced that we separated because our disabilities were supposedly too much to deal with.
Analysis of Self-Bias:
Even as I have experienced and continue to experience stigma, I am also careful to be vigilant in the necessary and careful reflection of my own biases, i.e., my own stigmatizing process. I know that because we live in a society that puts paramount premium to good looks, I take pains to “pass”, making sure that as long as possible, I am properly dolled up for public view, that I work hard enough to overachieve and never to be content with average, that “supercrip” is a label I always have to approximate, often to the disadvantage of my own health.
With my ex-husband who had a mental disability, I recall my own fears about him preventing real intimacy, my patronizing treatment and trivialization of some of his ideas he dearly and carefully formulated and my giving in to family and societal pressure to distance myself from him because of the extreme difficulties too of communication with him.
Now, as an acting adoptive parent to two young disabled women, one of them with a hearing impairment and the other developmental disability, I have to watch the propensity to prefer the easier one to mentor not only because she’s more pleasant and helpful, more mainstream looking but also because she does not exhibit abberant behavior. With these red flags in my own stigma monitoring system, I have a lot of work to do toward continuous transformation.
The Search for Meaning and Transformation:
In my search for life’s meaning and in the context of this pervasive experience of stigma, connecting the dots led me to a wonderful discovery and an ongoing process of rediscovery. It is in the painful experience of stigma that one finds the greatest, most immense association with divinity and through divinity, the wonderous experience of human dignity. This realization came to me way back in second grade when I went to catechism and they showed me a picture of Adam and Eve—perfect in form. “Man, they said, was made in the image and likeness of God!” And there in the picture was Eve, beautiful in form and perfect in every way. ‘I will never look like her,’ I thought, she’s not on a wheelchair. ‘I must then be a very distorted image of God’ I said and that thinking explained to me the discriminatory treatment I was getting from the outside.
In my teen-age years however, just when I began asking “why and why me?”, I met the Focolare Movement, an international religious ecumenical movement working toward unity. They had a precious secret revealed in Jesus Forsaken, a crucified God rejected in every way. This image was not new to me for I went to a Catholic school and as a kid, I feared the cross and thought that it was too gross to behold let alone display on a wall. In fact, they said that the Romans chose crucifixion as the ultimate punishment not only for its violence but what the raising of a criminal on the cross meant this, “You are so despicable that the earth itself rejects you—do not defile the earth even with your touch so go up there and hang in the air!” The cross was the ultimate, most cruel expression of hatred and stigma. And yet, in the infinite wisdom of a loving God, through His son who was allowed to suffer the most extreme rejection, even the most extreme rejection assumes dignity. What a concept! I could not find any other God willing to do this! In contrast to the picture of the perfect Eve in Paradise, I had my Crucified Lord on a cross telling me, “But my child, I want to be like you, now on the cross, made in your image and likeness so that your life can have meaning and dignity.” It was the lightning bolt that touched my heart and head. From then on, I held my head high as a disabled person immensely loved by God. This was the radicalism I needed, the radicalism that propels my life.
I want to conclude by going back to my sister’s comment on stigma by association. Remember her “I would jump in the river” comment?
Now I tell her the following:
Because of my physical disability, I discovered the personal, immense love of God for me and my divine dignity as His daughter. I found joy, meaning, courage and the audacity of hope and joy.
Because of meeting my ex-husband, I experienced the joy of human love which led me to the wonderful discovery of the Disability Rights Movement, the Mental Health community and my calling and vocation to dedicate my life to it.
Because of my work in an independent living center, I am able to support myself, my family, my community. I can pay taxes to Uncle Sam and I am able to leave my mark in the recreation of a new heaven and a new earth!
Because of my transportation, I can go to places and explore the world way way beyond the confines of my home, my city and even my country. I am able to prove that wheelchairs can climb hills, traverse mountains and fly the skies;
And because of my wonderful adopted sisters, I have a loving family of undiluted caring and love and a river of LIFE that overflows with living water!