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Digital culture for the disabled

“Do people with disabilities succeed? I mean, will I be able to get a house, or am I doomed to live in a poor district with crime, and barely live paycheck to paycheck? I think it's an outrage, when I hear stories of other people who want to succeed, but I hear their stories and it seems like they are just pushed to failure...is there a harsh reality that we must face? I'm being fairly blunt and boisterous, but I've been in the dark about things like this, and I've finally decided to ask my questions...sorry for exploding, but I'm afraid and many times people who are afraid lash out...I'm just wondering if I'm going to try to succeed, but my fate will only be failure.”

This question was posted on the Partners Online virtual mentoring community website on a visit there on May 26th, 2004. Partners Online (POL) serves as a social outlet for people with disabilities in the New England area to discuss their experiences, questions and feelings with others sharing similar experiences. POL gives disabled individuals the freedom to connect to their peers and speak in a safe, accessible online environment. POL allows youth to reduce their isolation and connect with peers and adults who can relate tho their experiences in a safe and accessible online environment—regardless of their disability. Barriers such as limited access to transportation and the logistics of face-to-face meetings make online mentoring an ideal solution.

Partners Online is a completely accessible online mentoring program for people with disabilities, ages 14 - 24, and their families. POL is a project of Partners for Youth with Disabilities (PYD), a non-profit organization whose core thrust is to “empower youth with disabilities to live up to their full potential,” says Eleanor Axelrod, PYD Technology Program Director. PYD offers group and 1-on-1 mentoring programs in areas such as health, entrepreneurship, theater and science.

The POL program launched in January 2004. The web community fosters mentoring and peer-to-peer dialogue through discussion forums, live chats, group mentoring and individual mentor matches. Youth are matched with successful adults with similar disabilities to serve as role models. Mentors and mentees are matched based on factors such as interests, personality types, age and disabilities. There are currently about 275 participants in the Partners Online program.

For parents, POL offers discussion forums, live chats and access to mentors. The 'parents' section of this online community is focused on providing support and insight into the various transitions connected to having a child with disabilities, featuring topics like “Who’s in Charge?,” “School to Career Issues,” and “The Transition Tunnel.”

Eleanor Axelrod explained that sometimes it is hard for parents to see the light at the end of the tunnel. She described a specific mentor matching that she conducted with a colleague with Spina Bifida, a nural-tubal defect. The mentor and Axelrod drove to meet the mentee in the mentee’s home. The youth’s mother was completely astonished by the fact that the mentee, suffering from the same disability as her child, drove. Before this encounter, the mother never conceived the possibility of driving as part of her child’s future.

“Something interesting is that people don’t think of [disabled] youth as ‘at risk’,” said Axelrod. This discrepancy has been an issue for the organization when looking for funding sources, who see the two situations as exclusively independent, Axelrod explained. “The organization serves a number of youth with disabilities and minority backgrounds who have emotional or learning disabilities, and also many who come from single parent homes and have limited family income,” she said. Youth with disabilities are the single group most at risk of remaining on public assistance.

A 16-year-old with Aspergers was recently interviewed for mentor pairing. Like many others interested in the POL program, he comes from a low income family who could not afford the technology necessary to participate in the Partners Online program. Fortunately, PYD provides equipment for individuals in this situation to participate in the program. The equipment may also include assistive technology, which is very individualized to each disabled person’s specific needs. PYD collaborates with Easter Seals of Massachusetts who conducts assistive technology assessments for PYD participants. The assessment helps to determine the best device(s) to allow the individuals to function at their highest capacity.

“What I’ve noticed, when comparing youth here with, say, my niece who is 13 and able-bodied, [a similarity is that] they pretty much all know how to use computers…Most kids are familiar with technology (computers, gameboys),” says Axelrod. “But some of our youth have had little or no exposure to computers as a result of econmic status, schooling or nature of disability. For example, those who are blind or have limited use of their hands may require assistive technology to use a computer, but often no one will pay for it. Mass Rehab Commission and Mass Commission for the Blind only pay for those accomodations when youth reach adulthood. Parents constantly have to advocate for services, so computer literacy may take the back burner."

"Resourceful [use of the computer] may be based on family economic status and cognitive ability," Axelrod continued. "Our experience is agency-wide. Client profiles show over 50% probably fit in that poverty level. Families struggle financially. Parents are having a hard enough time as it is advocating for their children. Computer literacy may be another issue that takes the back burner.”

The staff at POL has been surprised by how quickly youth pick up basic computer skills compared to adults. The two staff members, one full time and one part time, provide quarterly training sessions, and occasionally one-on-one trainings based on individual needs. The training provided by POL staff offers guidance in using the website.

The dependency on technology depends on circumstances such as learning medium and modality, strengths, limitations, attitudes and environment. A young lady without the use of speech or her hands, due to cerebral palsy, uses a laptop that sits atop a stand on her power chair to communicate to people. A laser dot on her forehead corresponds with keys, allowing her to “type” her ideas and converse. This same laptop and process is also used to surf the Internet, email and participate in Partners Online. In this case, technology is critical for her independence.

The idea behind POL is to “raise the bar on expectations,” Axelrod said. These very sentiments are expressed in an online discussion titled 'Being Heard.' “It is important to speak up when you can! It is very important for people to hear you when you are trying to get your point across and to take time and listen to you as well. Speaking up is not being rude…There is a way to speak up and let people know you are important and you have something to say. So be proud of who you are and what you have to offer the world! Make sure you are heard.” This encouraging message was posted by a Partners Online Mentor this past June. These empowering words, like so many others, help disabled individuals strive towards their full potential.

 

Source: Nia Ujamaa

License: Creative Commons