My youngest son Aaron, who is 21 years old and has Down syndrome, had a long-awaited specialist appointment today.
I’ll share my take-away message first: If you chose health care as a profession, you must value ALL people, including people who are different than you. This includes folks who have an intellectual disability.
If you don’t, you need to pick another profession.
Aaron has already generously shared what he needs when he goes to health appointments. This doctor did not get his memo.
This physician – who was both young and female, which bummed me out because I thought the younger generation of doctors learned to be more respectful of patients – knocked on the clinic door, didn’t wait for a reply and swept into the room.
She acknowledged Aaron but spoke mostly to me. I tried to redirect her questions to Aaron but Aaron was not having it.
Aaron has an intellectual disability, but that doesn’t mean he’s stupid. In fact, he’s extremely people-smart. He knows when people treat him with distain and so do I. This makes me want to spit nails.
The physician did not engage in any chit chat with him. (And today is Halloween! Talk about a built-in subject for small talk). She did not sit down. She spoke very fast, and I could barely keep up with her.
Aaron told me before the appointment, "Mom, you do the talking. The medical words are too difficult for me". The medical words were too difficult for me too, as I did not understand what she was saying either but she did not pause to explain words or even spell them so I could write them down. My only solace was I knew our (beloved) family physician would call us and explain the specialist’s report when it arrived in her office.
At the end, this doctor said brusquely, with her hand firmly on the doorknob: "Any questions?" "No", Aaron immediately replied. I tried reframing for him: "What questions do you have?" I gently asked him. "No" he replied again. I waited. Aaron did have a question. He asked it (It was a good and relevant question and I don’t care if it wasn’t. Give the guy a chance to speak). She gave him a two word answer. Her parting words were, "Call the office if you need anything."
The last freakin' thing we are ever going to do is to contact you again, I thought to myself.
Aaron and I walked out feeling shittier than when we came in. As a health professional, do you really want to make patients and their families feel worse after they finally see you after waiting for months for an appointment?
I mean COME ON. If you don’t make the time to self-reflect about how you feel about people you consider ‘lesser’ than you, then you are doing harm in every single patient interaction that you have.
I’m tired of Aaron having the burden of responsibility to educate these so-called ‘smart’ professionals about how to include him in his own care.
Educate yourself. Reflect on your own values. Think about how you are biased against people who are different than you. For god’s sake, be aware how you judge a book by its cover, how you discriminate against people by the way you treat them and just A BE BETTER PERSON.
Here are some resources. Do your own learning because I’ve been asking for my son to be treated respectfully from the health, education and disability systems and society as a whole for 21+ years. And I'm sick of it.
If you are so smart, you figure it out.
Am I Ableist, an e-book written for medical students by medical students - https://sites.google.com/view/amiableist/home?authuser=0
Azrieli Adult Neurodevelopmental Centre has resources about working with people who have intellectual and developmental disabilities - https://www.camh.ca/en/science-and-research/institutes-and-centres/azrieli-adult-neurodevelopmental-centre/clinical-innovations-and-tools#developmental
Down Syndrome Australia’s resources for health professionals - https://www.downsyndrome.org.au/services-and-supports/professionals/health-professionals/
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