Carly Findlay is a force! I first encountered her online a few years ago and I’ve been a fan ever since. Then last year when I was doing my blog course, Carly was the invited expert for a student online chat. It was a big fangirl moment for me! I am always blown away by her generosity, insights and can-do attitude. The following words are from Carly’s bio:
“Carly Findlay is a blogger, writer, speaker and appearance activist. She challenges people’s thinking about what it’s like to have a visibly different appearance.
She’s written for many publications including The Guardian, Daily Life, The ABC, Mamamia, Frankie magazine and BlogHer. She’s uses her blog to write about her skin condition, Ichthyosis, as well as promoted causes such as Love Your Sister and Donate Life.
Most recently, Carly was named as one of Australia’s most influential women in the Australian Financial Review and Westpac 100 Women of Influence Awards for 2014. Carly received the 2010 and 2013 Yooralla Media Awards for Best Online Commentary for her body of disability focused writing. She also won the best personal blog category for Kidspot Voices of 2013, and the 2013 BUPA Health Activist award for Positive Life Change. She’s also been a finalist in the Best Australian Blogs competition in 2011, 2012 and 2014″.
May is Ichthyosis Awareness Month and Carly has been working tirelessly to organise the first meet up of Ichthyosis Patients in Australia. You can read more about that in her Ichthyosis Awareness Month stories.
And here she is, talking about how educating doctors promotes compassionate practise. This post first appeared on Carly’s blog, here:
Over the Christmas holidays, I introduced myself as an adult to the dermatologist who gave me a pretty dismal prognosis as a baby. He pretended not to remember me until he told me I always had blocked ears.
I think he was surprised to see me. I told him some of my achievements including how I am now educating dermatologists about my condition (something he needed when he treated me).
I grew up in a small town with one dermatologist. He had very poor bedside manner and made some terrible assumptions of the way my parents looked after me. Needless to say, I was transferred to a paediatrician very quickly!
And like many parents of children with disabilities, mine were told to prepare for the worst. I was diagnosed correctly with Ichthyosis at birth. At first they were told I would be ‘better’ in a few weeks. And then when it was apparent my condition was worsening, they were told that they were not looking after me. At seven months, I was bundled into my parents’ arms – they were told to take me home to prepare for my death. There didn’t seem to be much talk of what I could achieve with the right medical treatments and support.
And so I lived past seven months, reaching milestones in my own time. Then I surpassed seventeen months, seven years, seventeen and twenty seven. I am still here today.
The political models of disability can determine a person’s compassion and empathy towards disability. And so a doctor’s low expectations for a baby born with a disability can set the scene for their attitude through the lifespan of that patient. Perhaps because of the medical model of disability, (where disability is viewed as a problem that belongs to the person with a disability), doctors only see a diagnosis, and not a person. They may not believe a patient with a disability is capable of being educated or empowered about their own healthcare. Yet if doctors studied the social model of disability (that the physical and attitudinal barriers are a a cause of society and can be removed), they’d have greater training and compassion for patients with disabilities.
Leana S Wren writes:
“While medical school curricula are replete with lectures on “one-in-a-million” diseases, little attention is devoted to teaching future doctors how to care for people with speech disorders or other disabilities.”
NPR raises the same issue:
“More than half of medical school deans report that their students aren’t competent to treat people with disabilities, and a similar percentage of graduates agree. Accreditation and licensing boards don’t require clinicians to demonstrate knowledge or skills in treating patients with disabilities.
Numerous studies have found people with disabilities receive inferior health care, including less information about prevention and fewer screening tests.
Mistaken assumptions are a big reason. Doctors and nurses have expressed surprise to me when I explained that they have to discuss risks and benefits with patients who are cognitively impaired. Some doctors are also surprised to learn that they need to ask someone who has a physical disability about sexual activity.”
And the New York Times cites how little training doctors had in managing patients with disabilities. Pauline W Chen MD writes of doctors being unaware of how to manoeuvre patients in and out of wheelchairs safely and with dignity, lack of physical access to medical buildings, and the lack of disability training doctors receive. In some cases, doctors didn’t complete the medical exam on the patient because they didn’t have the correct supportive equipment nor a care plan to safely assist them.
It’s this extra care – the physical care and the social care – that is needed to empower patients. Doctors need to move past the textbook and immerse themselves in the disability community to truly learn and empathise with our experiences.
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