lisa picLisa Tolentino is a doctoral student pursuing a Media Arts and Sciences PhD through the School of Arts, Media and Engineering (AME) at Arizona State University. She works in the Embodied and Mediated Learning Group, working closely with high school special education teachers, designers, artists and researchers to develop digitally mediated environments to support social interaction, exploration, community and creativity in learning for students with autism.


When I think back to the years when my sister and I were children, I remember a time when I could still fully relate to her. In her youth, she was a lot like me: a very shy and sensitive child who was acutely in tune with the emotions of others. We both experienced complex feelings but lacked the words to express ourselves. We empathized on-demand, giggling uncontrollably at curious coincidences or weeping quietly while adults whispered of serious matters. And we both knew when someone was talking about us.

We were six years apart, separating our interests and activities from one another. We loved being among friends, but making friends was much easier for me than for her. As I entered adolescence, I discovered “fitting in” meant I had to learn social graces to conceal and protect full emotional expressions. My sister, however, continued wearing her heart on her sleeve. I remember telling her, “You just need to grow up and get over it.” I learned to fit in socially with my peers, but she never did.

During my teen and college years, my parents supported me but remained hands-off as I chased my dreams, setting many goals and high standards for myself. In the last year of my college degree, I thought about my family’s hand in my success. And I began to realize one thing had been missing all these years: time spent with my sister.

My mother had always been in the forefront of social service. In her early twenties, she emigrated from the Philippines, taking her first job as a social worker in Kern County, California, in the mid-1970s. She later became director of the Jameson Children’s Center for abused and neglected children, and eventually transitioned into the role of ombudsman with a non-profit that offers legal services to Bakersfield’s low-income community. My mother’s involvement in social service opened my eyes to the complexities, fears, and hidden abuses that can emerge when a person becomes a ward of the state. She saw children move from one home to the next as they struggled to fit in with different families. She visited assisted-living centers where elderly residents sat quiet but restless in their rooms, lucky if they could express the profound loneliness or isolation they felt. My mom reminds us that one day, she will take my sister back to the Philippines, where there will be “plenty of relatives to take care of us.” Financial obligations, however, keep them here in the United States, where they will remain for many more years.

Growing older, I am trying to envision how my sister will enjoy a fulfilling life in this world. She still lives in our old family home in California, cared for daily by my mother and our extended family. She remains shy and petite. Her smiling face is worn from all the eyes that have stared at her, and for the uncountable times that she has been misunderstood, mistreated, or ignored. I often see her sit near our living room window, watching for family members as they come and go, waiting for her turn to venture forth with the rest of us. Our society works such that it steadily turns without her, like a carousel that she can never ride. In her eyes, it’s easy to see that she knows she will soon be left alone.

As an older sibling of someone with developmental disabilities, I want to believe that my sister will have better options than exist today. Policies such as IDEA and NCLB were founded on philosophies derived from civil rights and an individual’s pursuit of happiness. These are meant to provide a semblance of equality and possibility for individuals with disabilities to grow and achieve their full potential. My sister, however, will never be able to fight for her happiness on her own. The state will always see her as a burden, and she will rely on a community to support and protect her.

We are used to asking questions like, what can we offer people with disabilities? How do we give them the skills they need to survive? What if we asked ourselves what individuals like her have to offer our society? What have we not learned from them? What is at the core of our deep-seated value system that causes our social and political architecture to limit the potential of people like my sister? Couldn’t every facet of society benefit from the questions and challenges offered by their unique perspectives and worldviews?

I hear the word “inclusion” and accept that it moves us closer to embracing people with disabilities. Inclusion, however, should not only live in policy by mandate in schools or workplaces. Rather, it should lead as a principle of personal practice and understanding in order for it to spur holistic social change through a true cultural shift. Inclusion must occur across all levels of thought and human contribution. It will be present when we no longer have to identify it; it will just be the case. In other words, my sister should never feel that she is part of something because someone felt sorry for her. Instead, it will be because she is quintessential to the health of a community.

The existence of disability as an identity and the tension it elicits shows us how much our typical world takes for granted. It reveals the limits of our views on culture, creativity, success, biodiversity, and multiple ways of being. It exposes flaws in our personal psychologies. If we recognize that our own perspectives are limited or disabled, then we can begin to discover new approaches to living that are contained in the untapped human potential kept within the diverse thoughts and experiences of people we call “disabled”. Their perspectives will guide us toward social progress, social justice, and the redesign of community that is sustainably inclusive.

“Different thinking is where progress and invention and discoveries lie.” – Temple Grandin

Comments

8 Responses to “Inclusion as a principle of personal practice by Lisa Tolentino”

  1. marsha lay on 9/16/09 4:33 PM US/Eastern

    Our actions are driven by core beliefs and policies intended to force a reframing of ones belief system while a vehicle to promote needed conversations often fall short of the experiential learning generally necessary to result in new thinking around old issues. It is therefore critical that inclusive practices result in learning experiences for all stakeholders. Many times the setting is inclusive but the experiences are still very exclusive. Food for thought. Inclusion what does it really mean in your context? Shared space or shared experiences?

  2. Rob Esler on 9/16/09 8:40 PM US/Eastern

    It is an important distinction you make when you say your sister is “quintessential to the health of a community.” A disability is not necessarily a limitation, but a path to the same end through a different means. This is how I interpreted inclusion, every person contributes to the greater good of the community. The “disabled” affect the “abled” and the “abled” affect the “disabled”. We are one in the same.

  3. joanne meyer on 9/17/09 12:06 PM US/Eastern

    You write that inclusion “should lead as a principle of personal practice and understanding in order for it to spur holistic social change through a true cultural shift. Inclusion must occur across all levels of thought and human contribution. It will be present when we no longer have to identify it; it will just be the case.” I await the moment when this is true and work tirelessley promoting inclusion in houses of faith – places where you would think it would be a given that all are welcome. Places where everyone, regardles of ability is “quintessential to the health of a community”. Places where we alow the most vulnerable among us to transform each of us and our communities of faith and the world. As Pathways Awareness asks congregatios to focus on how well they provide accommodations so that everyone can share their gifts in their faith communities on October 11, 2009 I thank you for your thoughts on your sister, inclusion and promoting an inclusive society. For more information about Inclusion Awarenss Day vist http://www.inclusioninworship.org.

  4. Lisa Tolentino on 9/19/09 8:47 AM US/Eastern

    Marsha, thank you for a great question. In my mind, inclusion begins with shared space and shared experience, but it develops from activities that allow everyone to contribute their talents in ways that are purposeful, useful and meaningful to the community and to the person who contributes. This can be difficult for many of us to pinpoint in a world where efficiency, optimal performance, and quantifiable or measurable outcomes are considered ideal and highly prized. One would think that personal expression through the arts is another entry point into society for people of any ability. But even then, it is common to see classification of works as “art by disabled people”, “disabled art” or “outsider art”, where the focus is on disability can diminish the art’s impact rather than allow the art to transcend disability.

    I do not have an answer, but I do know that we can try to meet each person halfway. I believe that in the act of trying, as we open up our minds and our approach, they will help us find our way.

  5. Sharon Gilbert on 10/19/09 11:57 PM US/Eastern

    I love what Rob has to say…” A disability is not necessarily a limitation, but a path to the same end through a different means.” I have lived with a ‘disability’ for nearly 40 years and that is how I have tried to live. But as Lisa says…”This can be difficult …in a world where efficiency, optimal performance, and quantifiable or measurable outcomes are considered ideal and highly prized.”

    A simple tool like a curb cut or handicapped parking can sometimes be all that is needed for a person to reach their goal but often those very things are begrudged by those trying to reach their maximum efficiency. Unfortunately many wonderful ideas and expressions are lost when measurable outcomes are our only goals.

  6. Dr. Wendy Murawski on 12/15/09 2:47 PM US/Eastern

    Thank you for sharing your personal experiences with inclusion (or lack thereof). These are the most important and powerful connections that I think will make a difference to those reading them. The fact that you say your sister cannot fight for change and happiness on her own- that we have to fight that battle on her behalf – is a wonderful challenge for us all!

  7. New potentials: Rethinking disability through my sister’s eyes on 9/22/11 11:52 AM US/Eastern

    [...] Lisa Tolentino is an interaction designer, experimental percussionist, and Media Arts and Sciences doctoral student through the School of Arts, Media and Engineering (AME) at Arizona State University. Lisa leads a team of special education teachers, designers, and education researchers to create interactive game-like scenarios where youth with interpersonal challenges (like those in autism) can exercise voice and movement. Her work synthesizes disability studies, human computer interaction (HCI), cognitive science, and cultural theory to re-imagine disability aesthetics through cybernetic perspectives. Adapted from NIUSI-LeadScape’s  LeadCast blog.  [...]

  8. loi Malraux on 8/6/13 10:26 AM US/Eastern

    Hi to all, the contents existing at this web site are genuinely amazing for people knowledge,
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