ant, researcher, and health care professional allow me to speak not only from my own experience but from the experiences of many people who are aging with disability.
I, like many of my peers, had an early introduction to the so-called golden years and the aging experience, what our disability subculture sometimes refers to as “crip (short for crippled) years.” When I talk with older people without disabilities about their aging experiences, I often identify with what they describe and think to myself, “I’m already there!”
There is progress in identifying secondary and associated conditions specific to aging and living with a disability. However, this work has not translated into effective interventions. For many of us, maneuvering through the complex health care system is a dense minefield full of
physical, communication, program, and medical equipment barriers;
professionals with few, if any, specific competencies in treating disabling conditions;
fragmented and dysfunctional services; and
a lack of focus on living well with long-term disability and conditions.
It is a system lacking any semblance of disability-related literacy, competency, and clinical expertise. Successful navigation of the system takes enormous energy, razor-sharp advocacy, and considerable health literacy. These are necessary survival skill sets that few people have and that only a few more are able or willing to acquire.
The comments in this paper cover recommendations regarding planning “with” and not “for” people with disabilities, defining disability, the law, tracking progress, health policy and benefits, and research priorities.
Planning for and not with people with disabilities reflects an old paradigm: “a lot about us without us.” People with disabilities need to be involved not in token ways (not just advisory) but in major significant and powerful ways. It is important to include in the research and practice processes qualified people with disabilities who understand and who can think through issues from a cross-disability perspective. Qualified people with disabilities should be included as investigators, contributors, collaborators, and managers. People with disabilities also need to be included, not excluded, from randomized clinical trials that test the effectiveness of interventions such as new medications and surgical procedures.
It is time to embrace the approach “nothing about us without us!” Being diligent in seeking qualified people with disabilities and taking ad-