There are many moments where I catch myself saying, “we’re in the future!” whenever I’m excited about some sort of technology related thing or heard interesting science news. One of the really wonderful things about our scientifically progressing world is that medical care is getting better and better. Many diagnosis are no longer death sentences and are becoming more manageable and can have a higher quality of life than in previous decades. Centuries ago many genetic conditions were often seen as something like a punishment from God or some sort of abomination so babies were left to die, so it’s great to reflect on how society has now moved past that and science is constantly advancing. When I reflect on that sort of thing it gives me a lot of hope for the future of humanity, especially for the future of people with special needs.
I would describe the hope I have as a realistic and sensible type because there is evidence for what I’m saying. I have a problem with the type of hope that comes from things there are no evidence for, could call that false or delusional hope. A good example of that is the hope people get from the belief in heaven.
A sense of hope partly comes from a desire for things to be better, and what sounds better than how many have described heaven? Especially in a situation where a child doesn’t have the ability to walk and is told they’ll be able to run and play when they get to heaven. That is one of the things that five year old Julianna Snow of Oregon was told by her parents when they described heaven to her because she has a neurodegenerative illness called Charcot-Marie-Tooth disease. She has very weak lungs because of the disease and under certain circumstances may need hospitalization in order to live, and her doctors think in some cases things might get risky and there are quality of life issues. So her parents asked her if she falls ill would she want to go to the hospital or stay at home and go to heaven where she was told her lovely great-grandma would be there and be able to run around, and not surprisingly Julianna is saying heaven. To put it simply, their religious belief makes their little girl want to die. That breaks my heart that these parents are fine with giving up on the possibility of more time with their daughter because of a comforting delusion. They say they are giving her what she wants by listening to her, but she doesn’t know anything beyond what they’ve told her.
There have been many times where people have told me to not be so critical of the hope religion gives people because it doesn’t do much harm, but I think it can do a lot of harm. I think it’s harmful to make someone want to die. The CNN article about her and her family referred to her as dying in the title, but none of us know when we’re going to die so if you think about it we’re all dying, but by referring to her like that they’re essentially giving up on her (http://www.cnn.com/2015/10/27/health/girl-chooses-heaven-over-hospital-part-2/index.html?sr=fbCNN102715girl-chooses-heaven-over-hospital-part-20342PMStoryLink&linkId=18289967). Many people have been diagnosed with disorders that were told they were terminal as children but lived well into adulthood. Some of them are writing to Julianna on this Facebook page https://www.facebook.com/dearjulianna2015/ and I think it’s really awesome.
Giving up on people for silly religious reasons should be a thing of the past, I want to move further into the future with more sensible hope.