PEOPLE STORIES
Risks. The experience of Barbara written by Rick Santina.
Barbara Waxman Fiduccia died in May 2001. Because of spinal muscular atrophy, she used noninvasive ventilation for more than 10 years, and then chose to undergo a tracheostomy last year. She was widely respected as a disability rights advocate and as an educator teaching people with disabilities about sexuality and reproductive rights. Her work led her into many other endeavors including advocacy to prevent violence against people with disabilities, and studies of genetich research, cloning, stem-cell research, and eugenics. She was an amazing force in the community and a great friend.
Assistive medical technology is a double-edged sword. It enables people to live enhanced lives and, in many cases, allows people who would have been placed in institutions to live "on the outside". However, the other edge of the sword is that it requires due diligence on the part of person who utilizes that technology and who is ultimately responsible for its use and maintenance.
Barbara would not have wanted her death used as a means to attack assistive technology. She understood very well that a consequence of not taking responsibility for the equipment individuals used might be that these individuals would be placed somewhere where responsibility would be assumed by someone else – for their own good, of course.
Barbara died because a part failed. The same part had failed three weeks earlier while she was visiting her husband Dan at Stanford Hospital. Thank God she was at the hospital, the same hospital she had left as a patient just weeks before. Thank God that one of the respiratory therapists who worked with her during her stay was there that day. The ER staff and respiratory therapist were able to save her.
Did the experience scar her? Yes, it did. Did she curl up in a ball and commit herself to an institution so they could take care of her? Absolutely not. Did she think about getting a different part to replace the one that failed? Yes, she was aware of the problem and was looking into another solution. So what happened?
Her husband died suddently and her focus changed. She took her mind off of her equipment; the rest of us did, too. In the cyclone of events around her husband’s death, that little piece of plastic slipped from our minds. It was a fatal slip.
When someone like Barbara dies, we look for reasons and try to place blame. We look for reasons and meaning and lessons to learn. Do we the blame the manufacturer? Do we blame the caregiver? Do we blame the individual? Do we blame her friends who should have made sure the details did not slip her mind? Whom should we target? Who killed Barbara? Nobody. Her death was an accident.
Assistive technology is a tool. Sometimes we forget that wheelchairs, ventilators, scooters, and protheses are tools. We have made the tool as comfortable and transparent as possible, but it is still a tool.
The lesson is: respect your equipment, never take if for granted, but don’t fear it. Remember that the same technology that failed Barbara one night also enabled her to live an amazing life for thousands of nights before. We would not have been touched so deeply by her death if she had not lived such an amazing life. She showed us the best side of humanity and technology, and she made it look easy and sexy. She would not have had that impact if she had been stuck in some hole where she would have been "safe, comfortable, and looked after".
Barbara’s death is a reminder that freedom is never free. Barb would never had traded her freedom – and the risks and responsibilities that came with it – for the relative safety of a sterile institution. She would not have wanted anyone else to either.
November 2001