The world can be very tough on disabled people. Prior to the passing of the initial federal laws designed to provide accessibility and assistance to those in need, disabled people were relegated to second-class citizen status. Title 1 of the Americans With Disabilities Act was passed in 1990 and took effect in July of 1992. Prior to that, disabled people were almost invisible.
Several years ago, before Danielle was born, I was working with a client who was planning a Vietnamese New Years party. My client, Truc Nguyen, was an experienced and well-respected promoter and someone I’d worked with on many occasions. He was planning a party for 5,000 people with a huge stage, catered food, cash bars, screens, projectors, lights, décor; this was a major event. Two weeks prior to show time, Truc stops by my office to discuss a major crisis. He has sold out the event and wants to add another 2500 invitees to the party.
We had a 50,000 square foot room with a 60’ x 40’ stage, a huge dance floor, food stations, approximately 250 staff, TV cameras, LCD projectors etc. It wouldn’t be possible to provide adequate space for an additional 2500 people. Truc asked if we could increase the numbers from 10 people per table to 12. I told him that tables were 60” in diameter and 10 people was the maximum number of people you could comfortably sit at each one. Truc replied, “We can probably sit twelve per table because my people are very small.” After an appropriate pause to suppress the belly laugh that was so close to bursting through my chest, I told my client that we would not be able to add more chairs to the tables. He then asked if we could eliminate the aisles and add 250 additional tables to the room. I informed Truc that not only did his guest need room to move about but the wait staff and technical crews required room to work. I went further and attempted to explain that Federal Law requires that we provide accessibility for people in wheel chairs. The floor plan of this event provided the minimum aisle space required as per the Americans With Disabilities Act. Truc told me that we shouldn’t worry about the ADA laws because in his community, “those people stay at home. They really don’t come to shows like this.” The significance of this statement would not register with me for another 13 years.
Over lunch, the following day, my coworkers and I laughed about my conversation with Truc Nguyen. The absurdity of me trying to explain the Americans With Disabilities Act to someone who did not understand it on a personal level or a cultural level was pretty funny, at the time. His comments and feelings towards the disabled were more odd than offensive. They sort of went in one ear and out the other, or so I thought.
Flash forward to 2005; I’m in the midst of a mid-life crisis. The pressures of home and work are beginning to take its’ toll. I was argumentative with my wife, I was short-tempered with my children and constantly angry with the world. I was diagnosed with depression and began searching for a way to keep myself from losing my “grip.” My problems were compounded b the lack of information and resources available to help us deal with Danielle’s challenges. I started looking any and everywhere for answers to our questions and support for our family. After two years of writing letters and emailing “experts” and parents around the world, the words of Truc Nguyen finally hit home.
What Truc said to me thirteen years earlier, was not meant to belittle the disabled or trivialize their problems. He was simply stating the obvious. The fact is, we do not want disabled people around us. I don’t know if it’s embarassment, guilt, the “inconvenience” factor or perhaps they remind us of how fragile we can be as human beings. Whatever it is, I know our society would rather they not be around. When you look at the way autism is approached and addressed, it becomes amazingly clear. Organizations like the National Institute for Mental Health, the Center for Disease Control and Autism Speaks are hard at work to discover the cause of this disability. There are hundreds of millions of dollars available to research the cause(s) and prevention of autism. There is little or no emphasis on trying to assimilate and teach those who are already living with the disability. I don’t mean to critize the work or contribution of these fine organizations however, as a parent it is hard to see the massive amounts of financial, human and material resources being allocated to prevent more births while there are no efforts being made to assist the kids and families that current struggle for recognition and support.
What Truc said was an honest assessment based upon his view of his community. It is very interesting to look at this from a cultural perspective. In many ancient cultures, children who were born with disabilities were abandoned or killed. We are much to civilized to kill our young, disabled or not; abandonment is a different story and up to interpretation. The one thing that all experts agree upon is that early intervention is a key component to helping our children adapt to their circumstances. If we, as a society, know
this and fail to react accordingly, could this be interpreted as a form of abandonment?
The realization that my girls will face challenges because of their ethnic heritage and gender are sobering to say the least. My baby is an African American girl who happens to have a disability. What happens when I’m not here to care for her? What about those things she needs to know about the world but may not be able to grasp? Can I do anything more to provide her with the necessary tools to make it in our world? These are questions that may take years to answer. I hope that my search will provide these answers, not just for Danielle and me but for other Dads who share my concerns for their little girl’s future.
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