EDITOR’S COLUMN – August 2019

The end of July marked the 29th anniversary of the Americans with Disabilities Act. This issue of Access Press has […]

Tim Benjamin

The end of July marked the 29th anniversary of the Americans with Disabilities Act. This issue of Access Press has some great pictures of the ADA Celebration at Hamline University. We all acknowledge how much the ADA has changed our lives, but we all know how much more has to change, and that we have to stay active to protect our rights under the ADA.

I didn’t get to attend this year’s celebration because I was on bed rest with a pressure sore that finally sent me to the hospital. I was lucky enough to get excellent care, but being in a hospital even with the best care is stressful. Like a lot of people in the community, I spend regular time with doctors and other healthcare professionals, and feel like I have to do too much educating with some of them about how to treat people with disabilities as individuals with different needs.

Earlier this year there was a really good article in New Mobility (“the magazine for active wheelchair users”) about doctors with mobility disabilities. It was interesting to read how, because of ADA educational accommodations, many have been able to attend medical school and go on to active practice as physicians. Others, who were already doctors but acquired disabilities, were able to use accommodations and their new insights to become better doctors.

One doctor said that when he rolls into the room of a patient who has just had a life-changing diagnosis, “they instantly know I have been through what they are going through. It could be any of a host of things with life-changing consequences, cancer, trauma. I know they are in for hell, and I tell them ‘listen, you need to kick back and let the docs work — it will be tough … but you will get through it.’”

John Schatzlein wasn’t a doctor but he had that knack of rolling in to give many people that message, and I think of him whenever I am tempted to doubt how the docs work. I owe so much personally to John’s advice, and we at Access Press are also thankful to him for the bequest of so many gifts from his family and friends. (Thank you!)

What John had in mind when he told people to trust the docs was that the medical system has amazing knowledge and skill that can get us through these crises that occur in our health. But he would also say that a medical model has to work hand-in-hand with person-centered care, where the health professionals are interdependent with their patients to figure out what’s best.

We had to have a “care conference” with several doctors and therapists during my hospital stay, because each one was making sure that their part of my body was working. But we had to talk together about how all their diagnoses and treatments would mean a combined plan for me to get better. We talked about how my wound care was interrelated with other aspects of my health, and how a treatment plan could support other aspects of my life. I knew they got it when one doctor said, “We’ve got to help you get well so you can get back to work and help other people through your paper and your activism.”

Everyone who depends on the healthcare system has people depending on them in turn. I’ve got my colleagues at the paper and on the Access Press board, as well as direct support professionals. The more we all think about how interdependent we are, the better we can serve one another and keep the community healthy and moving forward.

I hope by next month to be talking about other issues in the community— like a new commissioner at DHS, and plans for action during the next legislative session. Meanwhile, have a cool and safe time at the State Fair, and stay out of the hospital!


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