Experiences
The belief that disability and illness inevitably lead to a lower quality of life is widespread both among people working in the healthcare system and people in the general population. This belief often leads to a lack of healthcare options because the idea of trying to prolong a life that is assumed to be unpleasant seems futile. However, this belief is not based on the experiences of people with disabilities, whose perspectives are rarely incorporated into healthcare systems or decision making.
People with disabilities do experience pain and suffering, but usually for the same reasons as everyone else. According to Adrienne Asch "When people with illness and disability report dissatisfaction and unhappiness, they link their distress not to physical pain or to reliance on medications, dialysis, or ventilators, but to those factors that also trouble non-disabled people—problematic relationships, fears about financial security, or difficulties in playing a valued work or other social role." 7.
This section is dedicated to sharing the experiences of people who have participated in VP-Net research and discussions of cases in the media related to the issues identified in VP-Net research. These experiences and discussion illustrate many of the problems, barriers and attitudes that lead to bad end of life care in the current system.
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