Thursday, September 4, 2014

Recommended: "Our Birth Story"

Sawbones: A Marital Tour of Misguided Medicine
One of the gulfs between disabled people born with their disabilities, and parents of kids with disabilities, is how we think about the birth itself and that first discovery of disability. While all of us with disabilities can understand, intellectually, that it had to be one of life’s worst moments for our parents, we don’t want to dwell on that, because somehow that implies that we are one of the worst things to happen to our parents. We know that's not true either, but that can be hard to remember, given how many parents talk about it.

Meanwhile, special needs parents crave some recognition and understanding about what they went through … a connection and empathy that might be impossible for other parents to give. Even we, their children, can’t fully connect, because we have our own complicated issues with “that day” in the hospital.

All of which is just an overlong introduction to an extraordinary podcast episode I just listened to. It is called “Our Birth Story”, and it is the latest installment of Sawbones: A Marital Tour Of Misguided Medicine.

Sawbones is hosted by Justin and Sydnee McElroy, husband and wife. Justin is a podcaster and comedian, and Sydnee is a physician. Together, they take a humorous look at some of the bizarre twists and turns of medicine throughout history. Lately, several of their shows have been related to reproduction and birth, because Sydnee was pregnant with their first child. This episode is a departure because it is about their actual birth experience, and it is only funny in the sense that these two can’t help being funny … otherwise it is an amazingly vivid description of what happens to parents when things don't go according to plan in childbirth.

Their little girl Charlie is fine, so their experience isn’t a direct parallel to disability. However, I really felt that regardless of the ultimate outcome, Justin and Sydnee had a lot to say that I’m sure parents of kids with disabilities can relate to, especially the “white knuckle terror” of knowing something is wrong and being powerless to do anything about it … and not even being told what’s happening. At the same time, Justin and Sydnee are smart and level-headed people, so they are able to view their experiences with at least some objectivity, which makes the podcast bearable and informative.

Listening in my car, I though a lot about my parents and their "that day" ... including my father, who was a Pediatrician.

I would be especially interested in what any special needs parents think of the podcast.

5 Fundamentals Of Disability Awareness

Ideas topic icon
There are scores, maybe hundreds of numbered lists out there on disability etiquette and awareness. So what I offer here is hardly original. Just consider it another attempt to cut through all the clutter and inside debate on the subject, and offer simple, unambiguous directives on how non-disabled people should conduct themselves regarding people with disabilities.

1. Keep it simple ... just say "Disabled"

Words or phrases like "differently abled" and "special needs", meant to sound less negative, are more trouble than they are worth. "Disability" may sound bad, but it has become widely used and generic enough that the word carries a neutral, purely functional tone. Most disabled people are fine with the term. Respect each individual's preference, but when in doubt, "disabled" and "disability" will do.

2. Ponder the phrase, "the dignity of risk"

There are worse things in life than disappointment. Experiences lost because they were never tried add up over the years, and are as tragic to disabled people as any accident or failure. As disabled people, our ultimate goal isn't always to prevent any bad thing from ever happening to us, and most of us are capable of assessing risk and deciding for ourselves what is worth it and what isn't. Protecting us so much that we loose meaningful choice in life also robs us of our dignity, which does more harm than short-term pains or setbacks.

3. Disabled people are people

We are not symbols. We are not pets. We are not angels come to earth. We are not here to teach you lessons about gratitude or humility. We are not empty vessels into which you can pour all of your affection, faith, fears, revulsions, morbid fascinations, or theories of life. We are people, with our own points of view, motives, and self-awareness.

4. Accommodations and supports are equalizers, not privileges

It may seem like disabled people get a lot of special perks and benefits, but things like disabled parking spaces, flexible work schedules, income support, and personal care assistance are designed to level the playing field for disabled people, not make things easy for them at everyone else's expense. "Equal" does not mean "The Same". In order to reach equality, people with disabilities, in particular, often need to be treated differently. 

5. If you think disability prejudice is harmless, benign, and not a big deal, think again

There is probably less hatred of disabled people than there is for other oppressed minorities, but the effect of well-meaning ignorance can be just as harmful as deliberate cruelty. Mistaken and misunderstood beliefs about disabilities affect how programs are designed, objectify us in dozens of ways, and rob us of agency. Plus, you don't have to go far back in history to find broad, well-meaning approval of practices like putting kids with disabilities away in institutions, sterilization without consent,  systematically denying education or work, and even killing in the name of compassion. Meanwhile, people who are normally downright fastidious about not using offensive language still seem to think it's okay to make crass references to "retards". Calling someone "insane" is still the ultimate put-down and invalidator. And it is actually becoming more common to be snarky about people who use mobility scooters, who are apparently all lazy old geezers.