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. This year the family of a young girl won a life-changing battle when the hospital that had refused them a kidney transplant reconsidered. Amelia Rivera, a five year old girl with the chromosomal disorder Wolf-Hirschhorn syndrome, was initially denied a kidney transplant when she was three years old. Her mother, who detailed the experience on a blog at the time, stated that a doctor at the Children’s Hospital of Philadelphia told them that because of Amelia’s intellectual disability she wouldn’t be able to receive a transplant. Amelia’s mom then watched in amazement as the blog post went viral, resulting in an online petition asking the hospital to reevaluate. Over 50,000 people signed the petition and the hospital reassessed Amelia’s case, allowing Rivera to donate a kidney to her daughter earlier this year. The transplant went successfully and Amelia and her family are doing well.

Read more at “Once Denied Transplant Due To Special Needs, Girl Now Thriving”, on Disability Scoop.

2. This October the Cincinnati Reds made an unusual addition to the ranks of their baseball cards. Thirty-year old Ted Kremer, who has Down syndrome, was given his own card as part of the 2013 Topps Update collection. Kremer has worked as a batboy since last year, and the Reds have decided to recognize his contribution to the team. The team uniform is usually reserved only for players, managers, and coaches; however, the team decided to make an exception for Kremer. The card entered into circulation on the 28th, and several are already priced on eBay for over $100.

Explore more in depth at “Baseball Card Features Batboy With Down Syndrome”, on Disability Scoop.

3. Television audiences in the US will have unprecedented access to the upcoming Paralympic Games. The Olympics have experienced a growth in popularity as well as participation since the 2012 summer games in London, and the Paralympics are paralleling that increase in popularity. A partnership between NBC Olympics and the United States Olympic Committee has given NBC the rights for the upcoming Sochi 2014 and Rio de Janeiro 2016 Paralympic Games. A total of one-hundred and sixteen combined hours of coverage between NBC and NBCSN is expected between the Sochi and Rio Paralympics, with the fifty hours of coverage for Sochi involving coverage of the five Paralympic sports, as well as the opening and closing ceremonies. The predicted sixty-six hours of coverage for Rio will be an increase of sixty-point-five hours from the coverage of London’s Paralympics. Live online coverage of the Sochi 2014 and Rio 2016 Paralympics will also be available via the USOC at TeamUSA.org.

Read more at “NBC Acquires Media Rights to Sochi 2014, Rio 2016 Paralympic Games”, on Broadwayworld.com.

4. Recently in North Dakota a would-be bride decided to turn her canceled wedding party into a celebration for the disabled community. Michelle Marxen had been planning her wedding for over a year when her fiancé broke off the engagement the day they were supposed to send out invitations. Realizing that it was too late to cancel the preparations she had organized for the big day, which included a ballroom, band, and decorations, Marxen resolved not to let the party go to waste. She donated the arrangements to Creative Care for Reaching Independence, an organization that provides person-centered services focused on empowering people with disabilities.  The canceled wedding is now set to be a Halloween party for the clients of Creative Care.

Discover more at “Spurned Bride Turns Wedding Into Party For Disability Group”, on Disability Scoop.

5. A woman with Down syndrome served as a catalyst for change when she won the right to decide for herself where she lives and works. Earlier in the year Margaret “Jenny” Hatch, twenty-nine, resisted her mother’s desire to keep her in a traditional group home. Hatch didn’t like living in that care setting, where she wasn’t allowed access to her computer or phone, was restricted in making decisions for herself, and worked at a sheltered worksite. She stated that she was treated like a child, rather than the adult she is. Hatch now lives with two friends, who have been appointed her temporary guardians. The court has instructed them to use a supported decision making model to help Hatch make her own decisions, whether or not they agree with her choices. Her case is the first time the court has ordered the implementation of this model. Hatch is reportedly much happier, living with her friends and working at a thrift shop. However, Hatch is not the only person benefiting from her triumph. Courts hearing guardianship petitions are putting more of an emphasis on preserving the rights of the person with a disability. In addition, a new organization has been founded, The Jenny Hatch Project, that works to empower people with disabilities and their families by giving them tools to ensure that people with disabilities retain the right to make their own choices and determine how they want to live their lives.

Learn more at “Center to Promote Alternatives to Guardianship”, on Disability Scoop.

To further understand the mission of The Jenny Hatch Justice Project, visit their official website.

6. I thought you might like to see one family’s success in using a wheelchair to create an amazing Halloween costume.

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

“For attractive lips, speak words of kindness. For lovely eyes, seek out the good in people. For poise, walk with the knowledge that you are never alone.” – Sam Levenson