What are we talking about?

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What are we talking about?

This week I researched high and low in order to keep you updated on current events in the community of people with disabilities. Hope you enjoy!

1. The issue of doctors denying patients with disabilities eligibility for organ transplants has been a long-standing problem. According to a study done by the Center for Biomedical Ethics at Stanford University, “despite making no medical difference, more than four in ten doctors consider neurodevelopmental delays in transplant decisions”. CNN ‘s recent coverage of this issue can be viewed on youtube.com at “Disabled baby denied heart transplant”. One such patient who has faced this issue is Maverick Higgs, who is less than a year-old and has been denied a heart transplant by three different hospitals on the grounds that he has Coffin-Siris. However, despite the doctors’ assertions that the “rare genetic defect” would “put him at risk for infection & tumors”, six different Coffin-Siris experts interviewed by CNN stated that having Coffin-Siris is not a legitimate basis for denial of a transplant. Luckily, Maverick was accepted by the fourth hospital his family applied to. In fact, after several adjustments to his medication, he is no longer in need of a transplant and will soon be allowed to go home to his family.

Read more about the issue at “Disabled patients say doctors are denying them organ transplants” on the Gawker.

2. A documentary is soon to be released that offers insight into the life of Jane Hash, a 39-year-old woman who has Osteogenesis Imperfecta or “brittle bone disease”. The disease has resulted in Jane having a much smaller body, weighing only thirty-eight pounds. In addition, since reaching 200, she has stopped keeping track of the number of bones she has broken.  Jane has an positive outlook on life, stating, “Most people’s unhappiness stems from being afraid…Most people are afraid to do what makes them happy, or they’re afraid to try different things to find out what makes them happy.” According to her, her approach to life includes “embracing new challenges and pushing herself out of her comfort zone”. The documentary about her life will be titled “Plain Jane The Shockumentary”.

Learn more about Jane’s story at “Woman’s life the subject of new ‘shockumentary’” at Wkyc.com.

3. This December Carly Findlay, a women with the genetic skin disorder Ichthyosis, showcased an impressive example of how to respond to ridicule and hate. Through her blog, which details her life experiences with a “visible difference”, Carly was alerted to a post made on the popular social media site “Reddit” that included a picture of her under the caption “WTF?” Many of the comments on the Reddit thread were very offensive, but Carly found others who offered her support, and many who had found her blog and “become educated”. On her blog, Carly posted an example of a “standout” comment that stated, “You, madam, are the strongest mother—— I have ever HEARD of, let alone met. If you are ever in Boston, I would be honored to buy you a beer.” Carly responded to the Reddit thread with her own calm comment, explaining her condition and her experiences. Eventually, she even received an apology from the original poster of the photo.

Hear more about Carly’s reaction and find a link to her blog at “How to defend yourself when your photo is ridiculed on Reddit” on the Daily Dot.

4. For the most part, there are only two job options for a person who is blind in China: massage or music. This is because, while there is no specific law prohibiting people who are blind in China from taking the essential college entrance exams, an alternative method for taking the exams, which are usually given on paper, has not been provided. In addition, the applications of people who are blind are often turned down. Despite this, China “has both signed and ratified the United Nations Convention on the Rights of Persons with Disabilities, which assures them full rights to an education”. Said Li Jinsheng, one of the men denied his right to an education, who is now the owner of a massage business, “I can’t accept this situation. I’m very hurt. It’s hard to be blind, and then to not let me take part in the examinations. I want to sue them. He also stated that he would be “deeply grateful” to the Chinese authorities if they were to allow him to take the exams.

Read more about this issue at “Barred from college entrance exams, in a blow for China’s blind” at The New York Times.

I’ll leave you with our quote of the week:

“You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty.” – Mahatma Gandhi