by Deb Cook Lewis
My family has the inherited characteristic of living long and with pretty good health. While I don’t expect to reduce the odds on this, I must admit that major surgery and recovery has been more daunting than I expected at age 70 and has helped me see the urgency of our advocacy in ACB related to medical services and devices.
This past November, I had hip replacement surgery resulting from a childhood encounter with a truck. I was always told I was not a candidate for surgery because of extensive pelvic damage. So when I began to experience major pain and functional limitations last spring, I wasn’t feeling too hopeful. Fortunately, medical techniques are always advancing, and I was suddenly a good candidate for robotic surgery which would replace the hip and make some systemic changes to my pelvis itself — think of it as a pelvic redesign.
Well, you know how these things go! It was advertised as a day surgery. I left the hospital six days later. They wanted me to go directly home and have outpatient physical therapy. I insisted on going to in-patient rehab, which was to be three weeks. And you guessed it, this was six weeks.
But wait! There’s more! My incision wasn’t healing properly, which necessitated a referral to home health. I learned that when this happens, you lose all access to external physical therapy, etc., which means that you start all over with your relationships.
It will be about 9 more months before I’m fully recovered, but I was medically released in time to attend the ACB Leadership Conference, for which I’m truly grateful. Along my journey, I had plenty of time to think about the implications of aging with disabilities and the likely acquisition of new ones.
My medical providers used several online portals which are almost entirely inaccessible. None of the systems talked to each other and it was up to me to make sure my providers were not in conflict — something that became an issue several times. Stacks of print mail that did not lend itself well to OCR also became the order of the day.
Thirty percent of the individuals living in long-term care at the rehab and nursing facility where I stayed were experiencing significant vision loss, without any sign of older blind program services from any of the three states these residents came from. Even periodic in-service training for staff could make a significant difference in accessibility of programs and services. Most of the staff who served me on my journey were terrific, caring people. But every provider was woefully understaffed for a host of reasons.
ACB will most certainly not be engaged in repairing our medical system, but we must continue to focus on our priorities related to a more accessible world for people with blindness and vision loss. To this end, we must continue to advocate for our legislative imperatives and take other opportunities to encourage systemic change in service delivery to the growing population of older Americans with vision loss.