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Putting the Heart in Healthcare

My name is Jeanne Marie Donnelly. I am an aspiring public speaker and educator. I have spoken to many diverse audiences including teachers on how to educate people with various disabilities and share my experiences with them about what it was like to be a special education student in the public and private school systems.

However, that all changed in 2012 when Hurricane Sandy hit the northeast and my family and I lost our home in Long Beach, New York. We lost everything including all my medical records.

Debris from Sandy covered roads and sidewalks.

I have had Cerebral Palsy since birth and when I was young, I never thought that I would have to explain what my disability is to my medical professional or explain what accommodations I would need to make my visit more comfortable for me and the doctor and/or medical professional that I was supposed to work with.

A prime example of this is when I enter a doctor's office and the medical professional speaks to my caregiver instead of me by saying things like, "can she talk or understand what I am saying?" This went on for quite a while. I got upset and got very angry and felt bad about my disability and about my situation. My family often told me that most people are not exposed to disabilities very often, if at all. Whenever I ran in to someone who was under exposed to someone with a disability, I would say, "it is okay to ask questions, I have no problem with answering any questions you might have.'' This would happen most times when I heard people whisper behind their back in public and sometimes even doctor’s offices. So, when I would get aggravated, I would make some snide or rude comment. My family would ask me, "did you make a teaching moment?" Sometimes I would get so flustered and angry that I would say mean and nasty things.

But then one day I decided I would use my gift of speech to educate incoming nurses and doctors on how best to communicate with their patients about their disabilities, especially since they are not ones living with a disability. My overall mission is to put the caring back in healthcare by speaking to healthcare professionals about how to approach and getting to know the patient as a person and not just their condition. The best way to do this is to talk directly with patients and their families about what treatment plan works out for both the patient and the doctor. This way it would make it easier for people with various disabilities to comply with healthcare.

The scary truth is most adults with disabilities don't go to the doctor unless it is a dire emergency. This could be due to lack of funds or duplication of services, which means, in most cases, if you have a preexisting condition that you were born with, most insurance companies will not pay for maintenance treatments. These help a person maintain the strength that they already have and the ability they have to maximize their true potential and live as a whole human being. When you are disabled, and you live on fixed income, and you have Medicaid and Medicare, you have doctors for the most who just want to treat the disease at worst, when most disability related illnesses can be avoided.

But the third and most important reason people do not see doctors on a regular basis is because of fear and anxiety of being seen as a number and a condition. Not as a person. And receiving poor healthcare because of the healthcare provider’s lack of knowledge.

There are many pitfalls in healthcare but as an educator and motivational speaker, I refuse to let apathy and indifference be one of them.

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