“Some will find every excuse not to see you. They will say, ‘Our machinery isn’t good enough for you. Maybe you shouldn’t come in.’” Or doctors will have trouble examining him because they cannot get him onto an exam table, so he said they will tell him directly, “I really don’t know what to do with you. Maybe you should go elsewhere.’”
He hesitates to complain. “You want the doctor to be on your side,” he said. And he worries that the doctor might spread word that he is a difficult patient, making other doctors spurn him.
Dr. Lagu said there are no easy solutions. One change she would like to see, which the National Council on Disability proposed this year, is including disability in the data health care systems collect about their patients. Not doing so makes it impossible to track disparities in treatment and outcomes.
“We have data on racial disparities because health systems are forced to collect data on race,” Dr. Lagu said.
Doctors need to know ahead of time that they will be seeing a patient with a disability. All too often, Dr. Lagu said, a patient will call and explain their disability, but the doctor’s office does not convey the message to the provider. “At the end of the day, when they get there, the doctor still doesn’t know the patient is coming,” she said.
Dr. Iezzoni said accessibility is another high priority for patients. That includes equipment, like exam tables with adjustable heights and scales that can weigh everyone, as well as communication accommodations for those whose hearing, vision or speech is impaired. Many patients also want doctors to have some knowledge about their conditions while appreciating a patient’s extensive knowledge of how disability affects their daily lives.
But that is just the start.
When it comes to discriminatory thinking around disability, “I know for sure that we have to change the culture of medicine,” Dr. Lagu said.