Cerebral+Palsy+and+Social+Networking

By Karin Lamson Cerebral palsy is an injury to the brain ("cerebral") resulting in decreased muscle control (“palsy”). The condition usually occurs during fetal development, but can also occur shortly after birth. People with cerebral palsy (CP) have muscle tightness/spasms, involuntary movements and impaired speech. Some people with CP have minor impairments, while others are very serious. A woman I know named Caroline (name changed) has CP. Her brain functions normally; however, she cannot control her body. When I “talk” with Caroline, she will use a communication board on top of her wheelchair. It can be very hard for her sometimes if she gets excited (like when we talk about cats). I would love to see Caroline communicate with others that also have CP. Besides the spastic movements she has, another barrier is the cost-prohibitive technology that would be needed for Caroline to access the internet. However, there are grants that individuals can apply for that would provide them with the technology that would allow them to use a computer and the Internet more easily, and that would improve their quality of life. The United Cerebral Palsy website provides information about the Elsie S. Bellows Fund, which provides asisstive technology through local UPS affiliates. The goal of the fund is to support people with cerebral palsy who demonstrate financial need, and who have no other means of acquiring the equipment that would allow them to improve their "functional capabilities." http://ucp.org/resources/assistive-technology/the-ucp-elsie-s-bellows-fund/

An online social network community would have a positive impact on Caroline’s life. The use of social media is a beneficial tool that can provide increased communication opportunities, connections to others, and supportive networks. A social network would reduce Caroline’s isolation by allowing her to conduct independent communication. Young adults with CP would benefit from connecting with other people their age who have the same disability. Luckily, Twitter provides an opportunity for young adults to connect with others like them. One of those accounts is @HandicapThis, and authors Mike Berkson and Tim Wambach Tweet about their experiences traveling around the country and promoting inclusive environments. ttp://www.cerebralpalsy.org/blog/twitter-and-special-needs. Furthermore, there are several Twitter accounts that allow families with children with special needs to connect, such as @ cpdailyliving and @LoveThatMax. Both of these accounts are run by women whose children have cerebral palsy, and they share their experiences raising their children with special needs, as well as any advocacy news and ideas for connecting parents so that parents feel like they have access to a national network where they can find answers to their most pressing questions. http://www.cerebralpalsy.org/blog/twitter-and-special-needs

Candor CP is an app dedicated to people with cerebral palsy. The developer has CP, and he wanted to help create a community for others with CP to connect. The app is an anonymous way to communicate openly and honestly with others who have Cerebral Palsy. The anonymity encourages open, safe communication about issues that may be too private to talk about on public social media. There are other online social outlets for CP individuals and their parents. Just a couple include @https://www.dailystrength.org/group/cerebral-palsy and @http://www.cerebralpalsy.org/forum.

For people with mild CP, they can usually use a computer with an adaptive mouse and keyboard. Oftentimes they will use keyboards with raised areas in between the keys, to place their hand on the raised area, then press their fingers down onto the key that they wish to type. For those with more severe CP, there are portable computer devices that can “speak” for them. Computers can have on-screen keyboards, head operated pointing devices, and voice recognition software that allow those with CP to access technology. The use of assistive technology and internet access can give individuals with CP a more independent and socially-connected life.

Reference articles: @http://www.huffingtonpost.com/nicole-luongo/iphone-app-connects-peopl_b_5643538.html @https://www.ncbi.nlm.nih.gov/labs/articles/27063698/ @http://www.cerebralpalsysource.com/About_CP/assistive-technology/index.html

http://www.cerebralpalsy.org/blog/twitter-and-special-needs http://ucp.org/resources/assistive-technology/the-ucp-elsie-s-bellows-fund/