Thread by @WesElyMD

1/ of 13:
QOL & #Disability: NYTs Classic

PRO TIP: do NOT project onto a person her Quality of Life. Ask & learn instead!

@benmattlin w/ incurable spinal muscular atrophy writes beautifully:

“I never walked or stood on my own.” Read on...
nyti.ms/2E7jK2g

#MedTwitter

2/ Mattlin: For people like us, simply enduring can feel like a tremendous victory. One bad cold, though, could spell our end. If our lungs fill with phlegm, we lack the muscle strength to cough them clear. Pneumonia is common.

#MedStudentTwitter #meded

3/ Mattlin: It’s not generally acceptable in my segment of disability community to harp on our defenselessness. Rather, the idea is to assert core competencies, to distance ourselves from the Jerry’s Kids’ model and anything else remotely pitiful.

#TipsForNewDocs #tipsforolddocs

4/ Mattlin: We seek fair treatment, rightful access to everything in society — jobs, romantic prospects, and so on. Highlighting the downside of disabilities seems counterproductive and self-pitying.

5/ Mattlin: The truth is, to live with a disability is to know an abiding sense of fragility. That isn’t always easy, but it’s not necessarily all bad either.

6/ Mattlin: I decided long ago that if I’m going to like myself, I have to like the disability that has contributed to who I am. Today, my encroaching decrepitude is frequently a source of emotional strength, a motivator to keep fighting.

7/ Mattlin: Let’s face it, people with disabilities are nothing if not first-class problem-solvers. We find all manner of devices to enable us to raise a fork, drive a car or van, go to the beach. I now control my electric wheelchair with my lips.

8/ Mattlin: True, it is a hassle having to devise alternative methods for living a normal life. But when it works, Oh, how good it feels! How triumphant and liberating!

9/ Mattlin: The perseverance to live fully with a profound disability comes, I think, in part from honestly facing your own powerlessness and frailty, and recognizing how much worse things have been and could still be. This can instill a delight in the now.

10/ Mattlin: In living with a disability, you’ve already dealt with much of what other people fear most, and if you come out on the other side you are, by definition, a survivor. The resolve required, and begrudging acceptance of what you can’t change, may bring a kind of wisdom.

11/ Mattlin: Perceptions about eroded autonomy. “You also can’t truly conceive of the many subtle forces—invariably well meaning, kindhearted, even gentle, yet as persuasive as a tsunami—that emerge when your physical autonomy is hopelessly compromised. nyti.ms/2ZFAe9b

12/ Ely: this is a form of structural #racism in a way. I’m learning as I gray. I sent this stream to share how I as a physician have done disservice & injustice to my pts by assuming their perception of their own QOL rather than asking them or their loved ones respectfully.

13/fin Ely: As a doctor, I must understand that she/he might have a narrow QOL Gap – the distance between expected & actual QOL, which if narrow translates into satisfaction & Peace. Serve them not us. Ask. Learn! Each person is unique.