A seriously injured child lies on the operating table, a surgeon desperately working to retain spinal cord function, when something goes wrong as the patient develops an arrhythmia under anesthesia. During resuscitation, the patient’s body shifts, compounding the injury and ensuring that she’s unlikely to have the use of her legs when she wakes up.
A patient is brought in from the field with significant crush injuries. She’s an athlete, and she begs the surgical term not to take her leg. After consultation in the OR and a review of her injuries, the orthopaedic surgeon feels that removing the limb is the best option. She’s devastated when she comes to in the recovery room.
A patient with a brain tumour develops speech deficits as a result of a delicate surgery. Between surgery, radiation, and chemotherapy, the cancer is in remission, but she’ll always have trouble speaking and acquiring new language skills.
In the world of medical dramas, all of these things are represented as failures of treatment. Disability in this case is a negative, the result of a series of things going horribly wrong while a patient is under the care of our brave doctors and nurses. The same notion holds true in the real medical world, where we are taught culturally that anything short of a full recovery is a failure, and that patients should be upset and infuriated when they don’t achieve the desired optimal outcome. Doctors both reinforce this and suffer from it, feeling as though they’ve let their patients down when they can’t deliver them to fully restored health.
I view all of these things, though, as successes. The child on the OR table will wake up to go on to live her life, though she may be using a wheelchair for mobility. She might become a wheelchair dancer or athlete, she might become a mathematician or physicist, she might become a doctor or lawyer, she might become any number of things. But she’s alive, and with referral to a good physical therapist, and introductions to people in the disability community, she can enjoy a great quality of life, though she may move differently than many of her peers.
That athlete won’t suffer serious complications, thanks to a quick and decisive move on the part of her surgeon. She may have lost all or part of her leg, but she’s not going to end up with gangrene or a host of other problems that could cause life-threatening symptoms. Once she’s recovered and in physical therapy, getting fitted with a prosthesis and getting comfortable again, she can talk with her therapist about resuming sports and getting on with her life. In fact, her high level of physical fitness before surgery is going to help her recover more quickly, and she’s going to have the physical foundation to get involved in parasports.
The patient with a brain tumour has survived a cancer that can be devastating — some tumours are inoperable, and the focus for those patients is on pain management and comfort care. Instead, she has a cancer in remission and the ability to enjoy many more years of life. A speech-language pathologist may help her acquire skills to help her manage her speech deficits. She may opt to study sign language, use a text-to-speech device, or explore other forms of augmentative communication. She may experience some frustration as she adjusts, but she’s alive.
I understand why physicians and society in general consider disability to be a failure. We live in a world where everyone wants a quick, clear fix for everything. One and done — that child in the OR may have a huge, serious problem, but after surgery, it will be fixed, and everything will be fine. That athlete might come into an ER with serious injuries after an accident, but they’ll be able to tidy her up and send her on her way. That cancer patient should be benefiting from the newest and best technology, allowing her to recover fully with no aftereffects other than a stylin’ scar and a good story.
Especially in the US, we want things to be simple, clean, easy. But they aren’t. The medical world is still a place of tremendous unknowns and uncertainty, and that’s why medical dramas are so compelling, whether we’re watching specialists deal with challenging diseases or peering into a busy ER. One outcome of unknowns and uncertainties is that we can’t always predict how a course of treatment or therapy will go, and sometimes, patients end up with temporary or chronic disabilities.
This is not a bad thing. Those patients are alive, but in the culture we live in, ‘better dead than disabled’ is a very real and persistent meme. There’s a genuine belief that maybe that kid on the table would be better off not waking up at all if her surgical team can’t stabilise her spine. And that belief is reinforced by the way disability is framed in medical dramas — we see the ‘tragic outcome’ and that’s all we get. We don’t get to follow up with these patients and see how they adapt to their disabilities. All we see is rhetoric about how tragic it is that they didn’t come through okay.
But they did come through okay. They survived. And this is something that should be framed for what it is: A success of treatment. How would medical dramas look if physicians on screen referred their patients to consultants who could help them adjust to their disabilities? If we saw more disabled people depicted positively? Look at Arizona Robbins on Grey’s Anatomy — after her limb loss, she spends a lot of time having difficulty adjusting (in part because she isn’t provided with support), but then she’s back on the OR floor, working as a doctor, caring for children, doing what she loves. She’s a living example of the fact that disability is not a failure, that it’s just another way of being.
Image: Kidney Paired Donation, Scott and White Healthcare, Flickr