I was up very early this morning. I did not sleep well. Actually I did not sleep at all. I am unhappy. I have no reason to be unhappy. Well, maybe I do have the right to be unhappy. In the words of my good friend Stephen Kuusisto yesterday I had a "tangled day". Entanglement and disability go hand in hand. Life with a disability is always an adventure. I was in my little town of Cazenovia yesterday. I needed to pick up my mail and put gas in my car. Ordinary and dull errands. I merely wanted to be outside and get things done before I saw my son for lunch. I shoveled out my driveway--a chore I love. I was content until I pumped my gas. I was accosted by a man who was upset. He got directly in my personal space, his face flushed with anger. "What are you doing out in the snow and cold! People like you are medically fragile. You need to go home now. Where are the people who take care of you". This is unusual. People typically do not get close enough to my body for me to feel threatened. In a guttural tone I replied "Leave me alone". Thankfully that is exactly what he did. Off to the post office. I am looking at my mail when a man taps me on the shoulder. Without any warm up I was asked "Have you seen the BBC documentary Simon's Choice? This is a documentary about assisted suicide. I answered: "Yes, I watched it last night." Deeply worried about the direction this unwanted conversation was going he replied: "Why don't you want to die? I have seen you around. We put down paralyzed animals. We should do the same with people. You can't walk or enjoy life. Your existence is depressing to all". How the hell do I respond to this statement. This man is a bipedal ableist. He is likely a pillar of the community and beloved by all. He is a Christian do gooder and his type abound in Central New York. No doubt he is a hard worker and devoted family man. He could be a member of the PTA or school board. I am sure he is a church goer. There is only one thing I know about this man: he wants me and all people who are paralyzed dead. He is eager to talk about it. I will not give the bigot the satisfaction. I reply "I have nothing to say to you. I compile the mail and quickly leave the post office.
My day is saved by son. He loves me. He values my life. He asked me for advice. I am proud of him and hope he is proud to call me dad. I am delighted for him as he has found a real job. He now works for a high end internationally known hotel chain. The job has potential in terms of professional growth and could enable his travel lust. I am delighted to see him happy and positive about his future. To celebrate we went to Wegmans and treated ourselves to some luxurious food we rarely purchase. We had an absolutely delicious meal. He borrowed my car for the weekend and was thrilled. No bus rides to and from work this weekend.
The above is the perfect illustration of a tangled day. Only people with a disability will feel an entangled day in their soul. I never know what people will say to me. I never know exactly how my day will go. I am forced to deal with a bigot one minute and the next I am sharing a meal with my son while my beloved lab Kate hovers nearby. Loved one moment and the next a total stranger suggests I should be dead. What does a sleepless cripple who had an entangled day do? Wake up well before dawn and read. As dawn approaches I bundle up. It is likely below zero and snowing. I love this deep chill. I love to see Kate's black coat covered in snow. The contrast of black and white amuses me. We do not stay outside too long. The dawn light approaches. It is truly silent. I am very much alone. No neighbors have lights on yet. The animals and birds are silent. The frozen lake is wind swept by snow. I feel at peace (no pun intended). This sort of bitter snow causes the metal of my wheelchair to creek. Only I know what this feels like and it warms me. I close my eyes, Kate at my side, wind in my face. I spread my arms wide apart. I love my crippled body. I love my life. The idea that death is preferable to life with a disability is laughable. I will never bow down to baseless disability based bigotry. Never.
