When I go to see the doctor, my IQ drops 50 points.
I don't know why, it was always thus. My doctor in Quebec was a friendly chatty woman who created an atmosphere where I could freely chat and comfortably discuss health. But even there I had difficulty in talking to the doctor easily and would often fumble around for words. It's gotten worse with my new doctor here in Toronto. He gives me really good health care but is icy cold, never smiles and never, ever, ever chats. Going to see him, which I must because with all the medications I'm on now, it seems like I'm kept alive by chemistry, is not an easy thing.
I've taken to writing a list of concerns down on a paper and going in and going over the list item by item. He responds professionally and appropriately. Then we're done. But the whole time I'm in there I feel like I'm a bumbling oaf.
Luckily, really luckily, Cicely wasn't like that.
The story of Cicely and her surgeon as told by her mom continues to upset me. Sure I'm glad the surgeon was 'educated' and 'challenged' about her bigotry by Cicely's trusting nature. Sure I'm glad that it all ended well.
But WHAT IF?
What if Cicely was like me and during the surgeons visit she shrunk into herself rather than reached out of herself? What if she was so ill or so frightened or so tired - that she wasn't herself? What if she hadn't been up to teaching a class on disability rights, disability pride and disability value? What if she had been cranky? What if she had been whiny? What if she had just lay there and not engaged the doctor? How would the surgeon then have seen her? What kind of care would she have gotten? Thankfully, Cicely was up to the task ... but ...
Isn't it a lot to ask of a sick child?
Isn't it wrong for a doctor to give a child of one colour better treatment than a child of another? How is this different? Why is a doctor even allowed to graduate when they carry a belief system that would give life to one and deny it to another.
What part of 'all' don't they understand?
I shake my head at all of this and don't know what the answer is ... how do we, collectively, challenge the prevailing orthodoxy that sees disability as tragedy and death as relief?
We all owe Cicely one. She managed to get through to one doctor.
But what do we do about the rest?
Dave, my family and I were involved with a project through the University of Kentucky and Center for Disease Control that is an educational piece for Doctors and medical students. It's a cd rom that challenges their belief systems and specifically deals with giving the diagnosis to families. Our local agency is working with the National Groups to further it's reach. Several universities have adopted it for continuing education.
My husband and I also speak to medical students at the University of Kentucky during their genetics classes about T21. Schools need to make this mandatory I believe...hearing from REAL families who live w/T21 daily.
It's a drop in the bucket though. Over the last 7 years since T21 has entered my life I have heard some pretty disgusting stories.
Thanks for being a voice for our family members too. You are making a difference!
As you continue to teach me, every day and in every way, we must continue to yell, in every way we can. Cicely deserves better - all people deserve better, we owe her.
I don't know Dave, but is scares the you know what out of me.
Dave, honestly, when you find the answer let me know cause I'm there - with you - ready to change this world. Your series on Cicely has disturbed me to. I'm sorry that I haven't commented before as I don't share your "faith". But she has been in my thoughts. And I'm very happy that things have gone so well.
I, too, have had Cicely's treatment on my mind. In addition to the points that you and others made, one more - where does the surgeon get off thinking that her personal "journey" (sarcasm) comes before the patient and family needs - she can't meet with the family before surgery because of her emotions; after the surgery she must share her feelings and issues with a distraught family waiting for news on their daughter, and they can't interrupt her telling of her growth! And of course, they had better be grateful; how insensitive if they had been angry, annoyed, offended, or frankly uninterested in her personal journey at this life and death moment in their daughter's life. The arrogance! This is why we have the Ashley Treatment, assisted suicide for people with disabilities and futility care laws. It's all about the health care system, not about the patient.
Dave, I hope you don't mind that I've linked to this post on my blog. Thank you for this.
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