I have to admit when I entered the field of disability inclusion four years ago, I was immediately put off by the term “consumer” which I quickly learned was used by service systems to refer to individuals with developmental disabilities. In my mind “consumer” was equivalent with “drain” and conjured images of people who take.

  I don’t want to fall victim to newcomer’s arrogance, ignorant of history or blind to the evolving nature of progress. I’ve learned that the term “consumer” was seen as a step up from the term “client” and was meant to confer more status, not less.  “Consumer” meant individuals with disabilities had purchasing power and systems should respond to them with the same accountability and respect that a business shows to valued customers who could just as easily take their money elsewhere. I see the progress this term was designed to foster. But now, it’s time for a new term.

    My problem with the term consumer being used to describe individuals with disabilities is the same problem I have with how this term is used to describe Americans, in general. Although the media often refers to Americans as consumers, I have never, in any conversation, identified myself that way. Why? Because I am not the sum of what I purchase. For me, “consumer” paints a picture that people are nothing more than their self-interest, than their material needs and desires. It emphasizes what you take and not what you give.   

   I am an idealist but not so naïve as to believe that we don’t operate, much of the time, on self-interest.  But that is not the whole story. And the term consumer not only distorts who we are, it creates limited expectations of ourselves and how we relate to each other. Do we have no other relationship with the natural world except to consume its offering? No other relationship with each other beyond as means to get what we want? With our degradation of the environment and the ways in which we aggress upon each other, perhaps this is the view that pervades.

    I have been inspired by Rich Harwood’s thoughts on public life. He says that too often we “view our fellow citizens as consumers. Consumers expect to receive exactly what they want, all the time, at a low personal cost.” I fall victim to this stance more often than I would like to admit, but I strive to move beyond such self-centeredness.  I imagine many people do. Rich urges us to view each other as citizens instead. Citizens put the public good before their private consumption. Citizens have a broader view of their responsibility to their community. Legislators are citizens. Their constituents are citizens. Professionals who offer to services to people with developmental disabilities – citizens. Individuals with developmental disabilities who make use of these services – citizens, too.

     The term consumer is especially glaring when we talk about people with disabilities  volunteering. Volunteering is quite simply the opposite of consuming. I wonder what effect the term consumer has on the psyches of people with developmental disabilities; does it make them less likely to think of themselves as people who are invited AND responsible for giving back to their communities? What effect does this term have on the volunteer programs who are approached by individuals with disabilities (and the organizations advocating on their behalf) wanting to volunteer? I’ve heard enough stories of agencies turning away interested volunteers with developmental disabilities before even laying eyes on them to speculate that it indeed has some effect.

   I propose a shift from “consumer” to “citizen” both in terminology and attitude. Truly, we are all in it together and thus we are all citizens. Sometimes we receive services. Sometimes we give them. But ultimately, we all benefit if our community is healthy or suffer if it isn’t. As citizens, we are all charged with solving the problems that present themselves and building on our accomplishments.

    I’ll end with a personal admission. At age 34, I finally arrived at a sense of myself as a citizen. This year, I made a choice to intensively study the ballot initiatives so that I could make an educated decision on February 5^th. It felt good. I wish this for everyone.

   What do the terms “consumer” and “citizen” mean to you? 

   For more thoughts on citizenship and public life visit the Harwood Institute for Public Innovation: http://www.theharwoodinstitute.org/ht/d/Home/pid/176

     “I had learnt the true practice of law…to find out the better side of human nature and to enter men’s hearts.”- Mohandas Gandhi

      Gandhi’s view of the law is unusual, to say the least, but it was this vision that guided his career as a lawyer and leader and it has been my entryway into the world of disability legislation.

     Last fall, I sat down to create my opening remarks for a meeting of the Los Angeles Service Inclusion Network that focused on the legal rights and responsibilities of including volunteers with disabilities. For a time, I was stumped. Being a community builder in my bones, I was passionate about relationships, the way we inspire each other to grow, and other matters of the heart. But laws – they always seemed dry – cerebral, ink in a book, a necessary last resort when conflict could not be solved by goodwill, something for lawyers to argue about in a courtroom. This was until I began to reflect on the nature of the Americans with Disabilities Act and other similar civil rights laws and realized that these laws, at their core, were about relationships. Moreover, that civil rights laws, like the ADA, were crucial in redefining how we, as citizens, related to each other and to the fact of disability.

     First, the ADA, and other similar laws remind us that we are indeed in relationship to each other. In the course of our daily lives, it is easy to forget that we are a part of society, a complex web of relationships that sustain us all. We are connected to millions of people whose names we will never know and faces we will never see. Nevertheless, as citizens, we are in relationship with them. And when we are in relationship it is not all about us.

     At moments, we resent impingements (I know I do) on our efforts to generate income or on our ability to do what we want, where we want, when we want. We know that our country was founded on the inalienable right to life, liberty and the pursuit of happiness. But we forgot that we are not alone in exercising these rights. Thus as a business owner pursues her right to life, liberty and happiness, she must remember that a potential employee with a disability pursues his. Such is the nature of all relationships. As we forego, for instance, our right to date others, when we marry, we must forego certain unfettered rights in our relationship to our fellow citizens. We do this so that the relationship and the benefits we derive from it, go on.

     Second, laws like the ADA define what a right relationship is. In my experience, a good relationship is one of equality. A bad relationship happens when one party’s needs dominate and the other party is left powerless.  Accordingly, the ADA states that employees with disabilities have rights to accommodations, modifications that allow them to do their job successfully. But these accommodations need to be “reasonable” and not cause undue financial hardship. Laws like the ADA embody the scales of justice, our symbol of wisdom, and enforce relationships that are balanced, supporting the needs of all parties.

     Laws like the ADA not only announce a relationship and set its boundaries, but they can do what the best human relationships do, evolve us.  Marriage, for instance, is one of the sacred laws, where we aspire to love of the deepest respect and fidelity. Often we fall short of the vows we took at the altar. We fall short of the people we said we would be and the relationship we promised to cultivate.  And so the work of relationships then is to keep striving to be better people who engage in more enlightened relationships.

     Similarly, the founders were idealistic. They had a revolutionary idea that ALL men were created equal under the law and thus all had rights.  In re-reading the Declaration, I was struck by how much that vision is relevant to what we are doing in our collaborations. It is a vision that we are continuing to realize, moving even beyond the ideas of the founders, who in their limitations saw men only as land-owning white men. The work of civil rights and the laws produced by these movements has been to move us closer to the vision of human relations that was originally put forth, to fully realize the ideal of equality for women, for people of all races, religions and nationalities, and finally for people with disabilities. These laws do, in fact, serve as the soul of our nation and move us beyond intellect and into the heart, beyond curtailing our worst qualities, to evoking our better natures.

I’ve been thinking about the connection between service and creation. The Tarjan Center has expanded opportunities for individuals with disabilities in both the arts and volunteerism. An artist in my personal life, my work as the Tarjan Center Service Inclusion Project Director is fulfilling, precisely, because it is intensely creative. Indeed, I believe our primary service, as the Tarjan Center, is as creator of stronger community systems, weaving together agencies, families and individuals into a fabric that reflects and supports the self-determination of people with disabilities.

    In my religious tradition, we recently celebrated the Jewish New Year. In the story associated with this holiday, God, seized by passionate curiosity, created the world.  Hearing this story once again, I was struck by how the act of following our deepest fascinations inevitably creates something of service to others. *

     In the disability world, when we “sell” the idea of volunteerism, we often pitch it as a means to productivity, as an opportunity to be of use. This is real, although perhaps a bit uninspiring. The word productive can conjure visions of an assembly line and the pressure we feel to churn out one more email or one more job placement. In selling volunteerism, I believe it is truer to speak of it as an opportunity for creation.

     What is the distinction between production and creation? Beauty.    

     The producer is judged on the quantity of her work, the artist on her work’s truth and beauty. What if we thought of the work of service as more than the number of meals served or community centers painted, but as allowing the world’s truest, most beautiful essence to emerge?  Like an artist, the most committed and effective volunteers are those that find the object of their service entrancing. On a grafittied school wall, they see a vibrant mural. In an empty plot strewn with garbage, the see a rainbow garden yielding delectable fruit. In a child, they see a dance of possibility.

   Creativity is less about an act itself, then how the act is undertaken. I’m reminded of the true story of David (not real his name), a young man with a developmental disability who was told by his mentor that he should always seek to leave his unique mark on the world. David became a bagger at a local grocery and, remembering his mentor’s advice, wanted to add his personal touch to his job. So, each week he printed slips of a favorite quote and deposited them into customers’ bags. A few months later, managers became puzzled when they observed that most of the customers were waiting in David’s checkout line, even though the lines were shorter elsewhere. No one wanted to miss out on the weekly quote! David’s expression inspired others. The florist gave away day old flowers and the bakery gifted pastries to customers at the end of the night. The heart of David’s artistry is that he dared to move beyond the production line (literally!) and personally invest in his work. In the end, he created more than quotes on slips of paper, he created a community out of a store.**

      Day-to-day service often requires us to turn our focus from the big picture to the hard work at hand. But imagine if we knew our creative powers at each moment of our service  – that our mentoring creates a more nurturing world, the trees we plant bring aliveness, the poverty we end births abundance, that an abundant, alive and nurturing world is a beautiful world. What more of ourselves would we imbue in our service?

   Beyond what service creates in the community is what it creates in the individual who serves. For me, it was nothing less then the chance to fashion my own life. For individuals with disabilities, who have traditionally had less access to volunteer opportunities, it may also be a long awaited opportunity to build a life out of genuine strengths, a life that reflects who one truly is, a life that is beautiful.

     Knowing who you are and acting from that place is one of the greatest gifts you can offer. Albert Schweitzer, the Nobel-prize winning humanitarian physician, said our calling is the place where our greatest joy meets the world’s deepest needs. This is the nexus of service and creativity and it is the art that we, as advocates, families, and professionals, engage in as we work to ensure that individuals with disabilities are included in volunteerism. When I reflect on this work we do together, I am, without fail, moved. Because our collaborations are more than productive, they are beautiful. 

What have you or someone you know created through service? What has service created in you?

*This is an analogy, not a religious pitch.

**I apologize to whomever I heard this story from (my memory fails). You deserve due credit.