January 23rd was chosen as the date for 'The International Day of Mourning and Memory' because it was the day that Sandra Jensen, a woman with Down Syndrome, won her fight to recieve an tranplant from a hospital that had refused her because of her disability. It's a day to celebrate the courage of those who fight and to remember those who suffered 'valueless' status within society; those who lived what many refer to as 'forgotten lives' and died 'unmourned deaths'. It is sad to note that Sandra's fight, though important in that it demonstrated the power of advocacy, continues to need to be fought. I urge you to read a post called Brick Walls and both leave a comment and follow the story to find out what action can be taken.
Today's post follows:
Thanks for posting this, Dave. The number of coments on CHOP's Facebook page has been incredible - but their response has been unsatisfactory thus far.
Thanks, Dave. I have gone to read the "Brick Wall" blog post that you link. I also have done a little looking around. Here are a few links that might help others who are looking to take action:
1. They have a facebook page, which now has a statement alluding to the situation and the flood of comments they have been receiving in the past few days. I encourage others to follow the link to read their statement and then leave a comment after the statement: https://www.facebook.com/ChildrensHospitalofPhiladelphia?sk=wall&filter=2
The blog "Not Dead Yet" also has a post on this issue: this post links to a few other places with further info: http://notdeadyetnewscommentary.blogspot.com/2012/01/philadelphia-young-girl-being-denied.html
There is a petition people can sign urging CHOP to reverse its decision and allow the girl a transplant: http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive If you sign the petition, I urge that you consider hitting the button that allows you to "give a reason" for why you are signing--people who receive/read petitions are far more likely to take your signature seriously if you include your own personal comments. If you just sign, people may think you're only signing to make a friend happy. If you take the time to share your thoughts on why you care enough to sign the petition, people will realize that you genuinely care about the issue. (This general rule is true for any petition). Make sure to invite your friends/family to sign the petition as well.
From the "Not Dead Yet" blog page, here is info on CHOP's patient's "bill of rights" along with contact information for them:
CHOP PAtient’s Bill of Rights
#2 on CHOP Patient’s Bill of Rights
Receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for care or your ability to pay.
File a suggestion, complaint, or grievance by discussing with the clinic, unit, or department manager or other supervisory person, or by contacting The Children’s Hospital of Philadelphia’s Family Relations Office by phone at 267-426-6983 (within the Hospital dial ext. 6-6983), by e-mail at FamilyRelations@email.chop.edu, by fax at 267-426-6990, or by mail addressed to the Family Relations Office, The Children’s Hospital of Philadelphia, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104.
Thank you, Dave. I have now blogged on Amelia Rivera's situation also:
Disability, the Quality of Life, and Amelia Rivera
I also mention your efforts to promote January 23 as International Day of Mourning and Remembrance.
Thank you for bringing this situation to our attention. I hope we can have an impact on this decision. It is beyond me how a doctor and a social worker can sit across from 2 parents who obviously adore their child and talk about a poor quality of life. I don't get it. Isn't love what this life is all about??? What kind of quality of life does anyone have without it???
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