Assistive Technology: The Various Roles of Assistive Technology in My Lifetime
Kimberly A. Walters
I am a T-5 complete spinal cord injury (SCI) survivor since 1993. Assistive technology (AT), paradoxically, paralyzed me for life, then it saved my life, and then it allowed me to regain my independence.
Prior to my automobile accident, I, of course, could not foresee the various roles AT would play in my life. As a young woman I took it for granted––as most people do––that I could just walk out the door, get in my automobile, and drive away without even thinking about it. I also never thought of an automobile as being an AT device. Over the years, because of our changing lifestyles and society’s infrastructure, the automobile has gone from being a luxury item to a necessity for most of us. The automobile gives us the freedom to come and go as we wish, to ride instead of walk or to rely on public transportation, and for some of us, it has become a part of our self-identity.
This AT device, this car that I relied on to live independently was a major reason I became paralyzed. Within seconds, I went from an extremely independent, self-sufficient woman, to someone who was not only fighting for her life, but who had completely lost her independence. On June 25, 1993, a reckless driver forced me off a major highway and my vehicle flipped top to bottom for approximately 178 feet. My injuries were extensive and life-threatening. My spine was shattered with 32 individual breaks; my spinal cord was severed; my neck was broken at the C-5, C-6 level and fractured the entire neck line up; all my ribs were broken but two; my pelvis was fractured; my left lung bruised; and I had massive internal bleeding. Although I experienced a great deal of shock, not once did I lose consciousness. Within the hour, I was transported to the local hospital to be stabilized for my ambulance ride to Strong Memorial Hospital in Rochester, New York, where I would spend the next 17 weeks undergoing rehabilitation. It was during my rehabilitation that I was introduced to the world of AT, a world that, outside of a wheelchair or cane, I never knew existed.
My initiation to the high tech world of AT was the spinal surgery that the staff at Strong Memorial performed on June 25, 1993 to stabilize my spine. They positioned two, 12-inch Herrington Rods and twenty screws and pins from T-1 to my pelvis that would allow me to heal and provide the first-step in the opportunity to regain my independence. Needless to say, the surgery was only the beginning of a wide spectrum of AT devices that would become a part of my life. For nine weeks I was allowed to sit-up no higher than at a 45-degree angle and, was therefore unable to transfer in and out of bed, shower or dress myself, or do my own bowel and bladder care. Over the course of the next nine weeks, I was introduced to the Hoyer lift that permitted me to be moved from my bed into a wheelchair to transported down the hallway to the roll-in-shower and to attend physical therapy (PT) and occupational therapy (OT) sessions. It was during these PT and OT sessions that I was introduced to a wide range of AT devices that would help me regain my independence and would allow me to return to my home, where I remain to this day, 14-years post-injury. This equipment includes a hand held reacher, a manual wheelchair, shower bench, hand held shower hose, and an outside home model wheelchair lift. In addition, eight months post-injury I would be introduced to the world of vehicle modifications, giving me the independence I had prior to my SCI. The AT devices I was introduced to during my rehabilitation stay, coupled with AT van modifications, allowed me to regain complete independence within a year post-injury.
Regaining my independence was an enlightening and refreshing experience for me. The resurgence of my independence as a paraplegic made me feel like a “whole” person again. It was during this transition from being an independent woman, whose only visible AT device was an automobile, to losing my independence as a result of the automobile accident, to regaining my independence through an array of AT devices, that I realized how fortunate I was. These AT devices allowed me to grow, regain my confidence, enhance my self-esteem, and furnished me with the opportunity to live once again as a self-sufficient woman and lead a productive life. I hadn’t been provided with these tools, I believe I would have been institutionalized in a nursing home and/or a Veterans Administration Medical Center. Without the AT devices I utilize on a daily basis––wheelchair, home wheelchair lift, van lift, vehicle hand controls, shower bench, hand held shower hose and a hand-held reacher––I would not be able to remain in my home.
No one should be denied the opportunity to live a productive life post-injury. When I lost my independence, I not only realized that I had taken my independence for granted, I found that the loss of it made me feel dehumanized.
Unfortunately, not everyone who has a disability and needs AT devices is as fortunate as I am. Reasons for this include a lack of financial resources, a lack of health insurance, and Medicaid and Medicare’s unwillingness to pay for certain AT devices because of their high cost. Fortunately for me, I am a US Army veteran and a user of New York State Vocational and Educational Services for Individuals with Disabilities (VESID). Both agencies have provided the AT devices that have allowed me to remain in a community, home-based setting despite having only Medicare and the VAMC for medical care. Without VESID and the VAMC, in all probability I would be living in an institution, which is more costly than were I furnished the appropriate equipment for independence.
I believe it is the responsibility of every health care provider in the United States to advocate and educate insurance companies, politicians, and each other about the quality of life that AT devices can bring to an individual with a disability. The readers of this journal are key models for this! Each of us has the right to an independent and productive life. For many of those challenged to rely on AT devices to remain independent, this entitlement has been taken away because of the societal price tag placed on an individual’s right to live an independent life. As a result, many are barred from their homes and shelved in nursing facilities. Some people requiring high tech AT communication devices are unable to acquire the equipment because of decisions by insurance companies and politicians who believe that the cost of these devices outweigh the benefits. In all probability, these decisions are being made by those who have never had to rely on any AT device to live an independent life, save the omnipresent automobile. Decision makers need to be educated that, in most circumstances, it is more economical to provide AT devices than to place a person with a disability in a long-term care facility.
I am a good example of how AT devices can benefit the person with a disability and society as well. Specialized equipment has provided me the opportunity to survive a life-threatening injury, regain my independence, participate in wheelchair sports, live a very independent, active life and, at the same time, be gainfully employed. When others with disabilities see that I was able to become productive, it gives them hope that they, too, will be able to live a meaningful life with a disability.
In closing, I would like to ask that decision-makers involved with purchase authorizations of AT devices for people with disabilities broaden their thinking process. They need to see the positive results that AT devices brought to my life and the lives of many others. I would ask them to consider what it would be like if it the tables were turned––how would they feel if a faceless bureaucrat denied them the right to regain their independence?
Kimberly A. Walters is an advocate/executive assistant for the AIM Independent Living Center in Corning, New York. She is a US Army veteran and a member of three New York State Boards that provide services to people with disabilities. She won the 2003 New York State Senate Achievers’ Award and was a 2002 Paul G. Hearne national finalist. Kimberly is a 2001 Corning Community College graduate and was a finalist for the 1997 Paralyzed Veterans Olympic Gold Medal in wheelchair racing. Kimberly currently gives motivational presentations on living with SCI and is pursing a professional skydiving license.