Alternatively, my atheist friends saw it as an unfortunate mix of genetic and situational causes. Some Christians had trouble accepting illness and saw it as evil incarnate. The practice of healing encouraged people to reject the reality of suffering and pursue a season of intense prayer. My parents associated with a Christian church where miraculous healings were a focus. Spirituality is an efficient way to dismiss reality none of it makes sense to me anymore. It seems odd to say thanks for the food in front of me but neglect to ask God why my daughter can’t eat that same food. The assumption that a “restored” body is the main triumph of the afterlife only reveals what some view as paramount to a good life on earth.Įver since I was a child, I’ve prayed to God at the dinner table thanking him for good things – it is just habit. It seems somewhat instinctual to liken disability to incarceration. My associate’s boldness was an obvious offense, but sometimes the narrative is more subtle.Īttorney Robyn Powell wrote in the New York Times – she and her friends live with a disability “attached.” People at funerals would use euphemisms about finally being released from his or her disability. In that moment though, I realized I hadn’t resolved that question myself and felt the shame of my inner revelation. The message says disability is the end of a happy and productive life – it might be better to die than to live with the “indignity” of a disability. I was once confronted by an acquaintance of mine who asked, “do you think it would have been better if your daughter had died?” I didn’t answer and walked away. He’d screw his face in exasperation pointing towards media campaigns that use shock footage of a teenager following an accident, being spoon-fed and “bound to a wheelchair” to scare the hell out of teens. George Taleporos, who lives with a profound disability. We should also disassemble entrenched messages that exclude. If this is true, our first response to disability should not be pity or dismissal, but to get on with an inventiveness in inclusion. I have met people with “broken” bodies who claim disability has enriched their lives. If a community’s response to disability is negative, it becomes a “bad event.” This takes the emphasis off the disabled person and puts it on the integrity of a community. A child living with a disability should not be categorized as a “bad event.” People with disability are able to live fruitful lives if the symbiotic relationship with the community is intact. The /article/665104 helped me understand what was in fact bad about disability. How can disability serve any purpose in our human experience except to be painful for the individual and painful for those around them? Well, that depends entirely on your starting point. I go around and around on one issue, and that is, how bad is disability? It is an odd thing to ponder, I know. At 14, she needs assistance with every part of her day as she cannot eat, walk or talk. As you can imagine, I have spent many hours contemplating the unfairness of Sunshine’s dilemma and how society will or will not accept her.
In fact, she belongs to the 0.3 percent who are under palliative care. My daughter is in the exclusive part of the club where the disability is profound. It is a strange feeling to be amongst 4.2 million other Australians who are in the club of disability – 3.7 million of those need daily help. Our journey had only just begun, so we moved back to Australia. A year later, our paediatrician told us Sunshine had severe #CerebralPalsy. The snow had begun melting from the sidewalk and I wondered if our life was coming out of the deep freeze. Jazmine had escaped the treachery of #Prematurity. Sunshine had oxygen and machines to monitor heart apnea. They had never experienced natural light. Following six months of surgeries and desperate resuscitations, our girls were finally able to leave the hospital that had been their only world. I thought I had time.īoth my daughters were in the Neonatal Intensive Care Unit (NICU) on life support and our home in Australia felt a long way away. I wish I could tell you I was ready, but I still had a pile of “how to be a parent” books on the side of my bed, unread. The problem was, they were three months early. Then he struck the down beat and the organized chaos continued in orchestral synchronicity.Īpparently our twin girls were coming. Someone yelled out, “she’s dilated 10.” The room paused for a second as though a musical conductor held his baton still.
On arrival at the hospital the room filled with doctors and nurses frantically sharing numbers and words that made no sense to the novice. As my wife doubled over in pain, I pushed our lazy mini-van around corners faster than it was designed to do. We were driving through red lights and dodging parked cars in the streets of Chicago.
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