From Russian Programs and American Programs to International
an archaic Russian term for the right arm; often a general term for arms and hands. Used in the expression “the punishing hand (desnitsa) of justice”
New Tools, New Opportunities
All over the country, what is known as assistive technology is opening the way for disabled students to do what their counterparts of years gone by could not even have imagined. “We all know how technology has improved in the last few years,” says Sheryl Burgstahler, director of DO-IT (Disabilities, Opportunities, Internetworking, and Technology), an advocacy program for disabled students at the University of Washington. “What most people don’t realize is that assistive technology has been progressing at the same rate.”
Susanna Sweeney-Martini, an outgoing, articulate University of Washington sophomore who wants to be a television news anchor, says she couldn’t function like she does today without assistive technology. “Without a computer, I couldn’t do my homework,” she says. “Without my [wheel]chair, I couldn’t get around. Without my cell phone, I couldn’t call for help.”
Lukas, a Spokane, Washington, high school junior can make his own music, thanks to a joystick-equipped euphonium that was custom designed for his special needs. Credit: Edutopia
DO-IT, the federal Americans with Disabilities Act, and other widespread efforts and laws seem to have created a greater determination among students and parents to make sure disabled people are included in all activities. Kristy Bratcher, the mother of Lukas, a high school sophomore in Spokane, Washington, who has extremely limited use of his arms and legs as a result of a birth defect, didn’t hesitate to encourage him when Lukas expressed an interest in playing a musical instrument.
“I always kept trying to find things that Lukas could do with peers other than an athletic event,” says Bratcher. “Everything is sport, sports, sports.” So when he brought home a note seeking permission to play a band instrument, she signed it and said, “Lukas, just go and see what’s going to work.” The Mead High School student chose a euphonium, a tuba-like horn.
Lukas at first just blew into the euphonium without using the finger valves, but his system meant he could play only one note. Although he patiently waited until that note showed up in a musical score and seemed happy to do just that, his patience and upbeat attitude paid off. A school employee sought out a music-store owner named Robin Amend, who is also a musical-instrument inventor and repairman. Amend, whose grandfather had played a musical instrument despite having only one arm, designed a euphonium with a joystick that electronically instructs the valves of the euphonium to move. Later, an engineer worked with Amend to refine the joystick technology.
Lukas may have some mechanical help with his instrument, but music teacher Terry Lack says his personality is what has turned his desire to play an instrument and be part of the band into reality. “He always has a smile on his face and has a really positive attitude,” says Lack. “[That’s] the real key.”
Lukas’ mom says her son’s participation in the school band has given him a chance to stretch himself and see what he is capable of accomplishing. “I can’t predecide what’s going to work for him or not,” she says. “So many people say, ‘You can’t. You can’t.’ Why do we have to talk that way? Let’s just see what it is and what he has an interest in, and we’ll figure it out.”
Assistive technology enables University of Washington sophomore Susanna Sweeney-Martini to overcome her disabilities and participate fully in her college courses. Credit: DO-IT, University of Washington
No More Excuses
DO-IT’s Burgstahler has little patience for school officials who don’t think they have a responsibility to include those with disabilities in every school activity possible or who believe a full-time aide can substitute for technology that gives the students more independence. “If they have access to their own computers, they can take their own notes, they can take their own tests, they can write their own papers, they can use the Internet and do their own research,” she says.
And as to concerns about the high cost of assistive technology, Burgstahler points to the benefits, and she wonders how schools can justify not investing in tools for disabled students.
“Students can now use their brainpower instead of their physical capabilities to go to college and then on to careers so they can have the life all of us want to have,” she says. “They can have the American dream.”
Building a Dream
We met Natalia Bartkova , and Aleksey Trantserv and their spirit and passion and depth of interest were remarkable.Something to see is Aleksy with kids. They have a program where they teach games to children. Just board and social games so far. I thoroughly enjoyed working with them and analyzing the ways in which they worked. Kudos to them!!
As a part of our study for the US Russian SEE exchange we visited Desnitsa. This NGS has a mission to provide the integration of Samara region disabled people into society and to promote the ideas of independent living philosophy and social approach to disability on the bases of partnership and use of new technologies for work. This organization was founded in 1997.It is an umbrella program and we saw their outreach in the business incubator project for Samara.
Its main goals are the protection of rights and interests of disablied people;
Providing disabled people with equal opportunities in all spheres of social life; and integration of disabled people into society.
Here in Russia they have legal adviser’s help and psychologist’s help to disabled people and their families, information and consultation services
And they perform seminars to teach how to understand disability, and how to have people defend their rights, including rights on education and labor.
They give assistance for disabled people to help them get education and learn to choose a profession; they provide expert services for employers to make special workplaces adapted for disables peole ; expert services how to adapt the apartments for people with different disabilities; and produce films and public service advertising about disabilities.
Georgian team learns to build wheelchairs. Photo by Beso Darchia
Ralf Hotchkiss from Whirlwind Wheelchair International training Georgian team. Photo by Beso Darchia
WID’s International Program builds leadership and capacity in disabled persons organizations (DPOs) in post conflict and developing countries to promote the full inclusion of people with disabilities into all aspects of society. WID provides training and technical assistance to DPOs to conduct effective disability advocacy, community barrier removal and public education campaigns; develop national policies; and create networks and national coalitions. During the last decade, WID has worked in Abkhazia, Armenia, Azerbaijan, Colombia, Georgia, Iraq, Morocco, Russia and Uzbekistan and has provided technical assistance to disability leaders in Bhutan, Ethiopia, Lebanon, Nepal and various other countries.
For more information on WID’s international training and technical assistance projects, contact Bruce Curtis, International Program Director.
Georgian Wheelchair Production Network
Funded by the U.S. Agency for International Development (USAID) and working in partnership with Whirlwind Wheelchair International (WWI), the Coalition for Independent Living in Georgia, along with their regional member organizations, the Association of Disabled Women and Mothers of Disabled Children in Zugdidi and the Association of Gori Disabled Club, and The Treatment and Educational Center of Child Neurology and Neurorehabilitation (CCNNR), WID is in the fourth year of a 5-year project in the Republic of Georgia to set up a sustainable wheelchair production and repair facility and a postural support seating and cushion service in Tbilisi; develop a mobility, self-care, and advocacy skills training system for men and women who use wheelchairs; and conduct advocacy, public education, and community accessibility barrier removal activities in Georgia. Most of the factory workers and advocacy team members are people with disabilities, and almost all are wheelchair users.
To date, the factory has produced and distributed more than 1500 low-cost, high-quality Whirlwind RoughRiderTM indoor-outdoor wheelchairs. Occupational therapists at the Children’s Center for Rehabilitation are being trained to prescribe postural seating and have fitted and provided supported seating for 125 children in wheelchairs so far.
Advocacy teams are conducting a wide range of activities including peer support, mobility and self-help skills workshops and camps for wheelchair users, and disability awareness and community access/barrier-removal trainings and roundtables to educate NGO staff, media professionals, teachers, government officials, lawyers, and architects about the need to improve community access. The 3 teams are also working to make key public buildings accessible by identifying and removing barriers, including building ramps and making bathrooms accessible. Sites include churches, sports facilities and recreation centers, schools, banks, museums, restaurants and shops.
A major goal of the project is to increase public awareness about the importance of an community accessibility and barrier-free environment, and the teams organize disability film exhibitions, media and poster competitions as well as produce public education videos, shown at film exhibitions and on Georgian national television, and public service announcements broadcast on local radio stations. The project has also hosted three national conferences on community accessibility for government officials and lawmakers, professionals, media, and persons with mobility impairments and their families to address issues, share lessons learned and to discuss strategies for implementation of legislation promoting a barrier free environment in Georgia. The most recent conference was attended by the new Prime Minister of Georgia, several other Ministers, the U.S. Ambassador to Georgia, and the USAID Mission Director.