Disability Advocacy and "Scaling Down"

Where's Luki?

 Advocacy for my son and his disability comes by way of making sure IEP goals are appropriate for him at school; enrolling him in summer programs as those offered through AbilityFirst where kids of all abilities are encouraged to swim, explore the community and make friendships; making sure our family gets in home supportive services, acquiring MediCal benefits so that he can get diapers/medical equipment as well as be eligible for numerous other government benefits; and keeping an eye open for any programs offered through organizations such as the Regional Center that help him with social development and promote inclusion in the community.   I show love and support for my son by treating him with gentleness and making sure that he is fed, clothed, groomed, well rested and treated with love and respect, every day.  However, I haven't had much time, energy nor resources to tackle bigger and grander projects that help bring disability awareness and acceptance to a large audience.  I see so many amazing parents of special needs children doing grand and laudable things like launching an international support organization, serving on the board for these organization, raising thousands of dollars through fundraisers, establishing media empires for those with disabilities or opening adaptive play gyms as a business, and I feel a bit inadequate and wonder if I am doing enough to support my son and promote the Dup15q community.


During my one year study abroad at the University of York, England in my senior year of university, I remember taking the train to a more metropolitan neighboring city, Leeds, to do some weekend shopping.  On the train, I encountered a small boy with Downs Syndrome around the age of 10 accompanied by someone who may have been his grandmother.  They were so happy and excited to be going somewhere.  Were they going to a party? Or, to meet a long lost relative or friend?  The lady didn't treat the boy badly or differently in any way which I thought would be the case.  I remember thinking how beautiful it was to witness such an interaction because up to that time, I had always imagined living with a family member with an intellectual disability as being full of sadness, shame, disappointment and unhappiness. How can one possibly have a happy and fulfilling life when one can't achieve any of the good things that society deems good/ successful/ beautiful?   Peeping into that beautiful moment in the bus opened my eyes to how happy and excited one can be despite living with a disability that society defines as being shameful and sad. It showed me that intellectual disability was nothing to be fearful of at all and that meaning to any experience comes down to how one sees a situation. It made a far greater impact on me than any celebrity who speaks to thousands of people to bring awareness and charity to a cause.

I am reminded of Charles Eisenstein who wrote a beautiful essay on the importance of doing good deeds on small levels without there being great fanfare, pomp and circumstance. Click here for link to essay:  Scaling Down


  He said doing things on a small scale was just as important as grand and ambitious projects done to earn fame and fortune.

"The logic of bigness devalues the grandmother spending all day with her granddaughter, the gardener restoring just one small corner of earth to health, the activist working to free one orca from captivity. It devalues anything that seemingly could not have much of a macrocosmic effect on the world. It devalues the feminine, the intimate, the personal, and the quiet." -C.E.

"When I focus on the small, intimate realms of life, taking the hours to tend to a relationship, to beautify a space, perhaps, or to enter the timeless child’s world with my youngest son, I am subject to an unease along the lines of, “There is something more important I’m supposed to be doing.” The logic of bigness devalues the very heart of life." -C.E.

I hope he is right.  It would relieve me of much guilt and feelings of inadequacy.  Just knowing that as I cuddle my boy or play with him in a gentle and kind manner with no one to witness the act is just as meaningful as reaching thousands of people through celebrity or ambition.

 "For me, scaling down implies a kind of trust that it is OK to do just this, right here, right now. Letting go of controlling the macroscopic outcome, action becomes a kind of prayer, a kind of aligning oneself with the world one wants to see." -CE