James Kirkwood wrote an amazing book called “Good Times/Bad Times.” In it, one of the characters talks about his “paintbox theory of life.”
We come into this world and are issued a paintbox and told to go forth and paint pretty pictures. And so we try, and some of us open our boxes to find them stocked with innumerable paints of every hue and type, and a full range of brushes; everything one could imaginably need to paint. Others find their boxes stocked with only the basic primary colors; the paint equivalent of the “small” Crayola box, and a couple of brushes, adequate, maybe – and do what they can. Some boxes are equipped only with one rather beat up brush and a couple of partly dried out tubes of paint. And still others discover that their boxes are so smashed and damaged they can’t be pried open at all. But the world still demands the same pictures of all of us, and belittles those who protest that the playing field is far from level.
What is a painter to do without paint? Van Gogh would use the money his brother sent him for food, for rent, for medicine, and spend it on the expensive oils that he ran through so quickly, applying them thickly on what would one day be masterpieces. But others saw this as selfish, irresponsible, even a symptom of the insanity they suspected he suffered from. He ended up sick and malnourished and in an asylum for the insane, dying long before he should have, partly by his own hand but partly due to a world that rejected him for pursuing what he knew was as essential as air, his art. How much poorer would the world have been otherwise…
Will was born into a life where he faced challenges that others do not. He struggled to learn to read and do math; his cognitive issues meant that he would need more help than most to live a life of self direction. But he pursued independence with the same single minded focus that Vincent did paint, and would – and did – willingly kick aside the always luring promise of safety if it meant giving up autonomy. Ben Franklin’s warning about “those who sacrifice liberty for security deserve neither” always came to mind when I’d watch him, in awe, struggle with determination and courage that seemed utterly without limit, to protect his hard won victories and pursue ever more. He never once doubted the essential necessity of his pursuit. As essential as air, that was clear.
Will was also born into a life that, on the surface, offered enormous privilege. His family was able to pursue the best medical and educational opportunities to help him. And at every stage of this pursuit, they encountered those who were determined to exploit Will – and his resources – for their own profit, with no concern for Will’s best interests and wishes. It is a testament to the depth and breadth of Will’s personal courage and strength that he achieved the amazing victories that he did when one considers how extraordinarily difficult it has been to get the regulating authorities to consider evidence and act in cases of exploitation, abuse, neglect, and the rights violations of people with disabilities in Illinois. He was well named, because Will required an endless amount of it to live his life. Taking his life as our example, we will not give up in our pursuit of justice. Obstacles and stonewalling will not deter us and not discourage us. Will never doubted he would be ultimately victorious; never doubted it because he knew, with certainty that victory would belong to those who could most endure. And his life had taught him just how tremendously much he could endure. He had a habit of storing up platitudes, aphorisms, that helped him make sense of the senseless. Once I asked him, with skepticism, if he’d be able to handle the stress the fight to leave the Ray Graham organization was causing him. After some some thought, he finally told me, “Time will tell…” And he smiled.