Representation Matters

Good Afternoon Everyone!

Thomas here. It’s a pleasure to take the time to get back to you all, both with a fresh topic and with updates on items mentioned in the previous post.

1. Fresh topic: Doctors with disabilities

Representation matters.

This New York Times article (https://www.nytimes.com/2017/07/11/upshot/doctors-with-disabilities-why-theyre-important.html?emc=edit_ne_20170711&nl=evening-briefing&nlid=60728874&te=1), titled “Doctors With Disabilities: Why They’re Important”, was released only yesterday by Dhruv Khullar.

In it, a number of important statistics, study findings, and personal stories are brought up and bear emphasis:

-“More than 20 percent of the American population lives with a disability, but as few as 2 percent of practicing physicians do — and the vast majority acquire them after completing training.”

-“Disabled individuals are more likely to feel that their doctors don’t listen to them, treat them with respect or explain decisions properly. Doctors often make false assumptions about the personal lives of patients with disabilities. For example, women who have difficulty walking are much less likely to be asked about contraception or receive cervical cancer screening, in part because doctors assume they’re not sexually active. Disabled patients are also about 20 percent less likely to be counseled to stop smoking during their annual checkups.”

-“Dr. Snyder remembers the difficulty of adjusting to life as a patient after his accident, and the long road to recovery. But he says his disability and rehabilitation have fundamentally changed the way he cares for patients — for the better.

‘I would have been this six-foot-tall, blond-haired, blue-eyed Caucasian doctor standing at the foot of the bed in a white coat,’ he said. ‘Now I’m a guy in a wheelchair sitting right next to my patients. They know I’ve been in that bed just like they have. And I think that means something.'”

Now, can’t a doctor without a disability adequately treat a disabled patient?

Of course they can. Talent/ability aside, there is a readily-available comfort for patients when they know that their doctor has personally experienced some form of their circumstances. One of my doctors was a brain injury survivor too. His being on both sides, caregiver and recipient of care, allowed us to talk both in terms of what he thought best for my care and also to tell me what had worked for him.

He told me how his biggest year of improvement was from two-to-three years post-injury. He told me this when I was only half-a-year post-injury. The importance of patience was emphasized by him.

It’s now more than six-and-a-half years since my TBI. My patience has seen me through to earning a graduate degree, to resuming international travel, to inventing ME.mory, and to maintaining healthy relationships with friends, family, and my partner, Lindsey.

Without his perspective, as both patient and doctor, I likely would not have felt as capable.

Representation matters.

2. Updates on points from the previous post:

1) Book draft – What’s the latest news? How has the entering of edits been going?

At the last post I was halfway done inputting edits. I am now quite beyond that, over-75%, and so I expect to be finished inputting edits by the time of the next post here. I was thinking to then note down one or two words to summarize the text from each page of the book. Essentially, what does each page represent, what does each add to the work?

From that I may be able to see what themes emerge throughout:
-Should they be reinforced if understated?
-Should they be reduced if overemphasized?

In August or September I will be likely to consider more fully how this book should be released. Should I self-publish? Should I approach publishers once more now that I have a “final” work to show them? Feel free to share your thoughts and recommendations here.

2) ME.mory – What happened with that film director and his team? Will I and/or ME.mory be the subject of a documentary?

There is still interest in this project. Members of the team had been out of the country. As this is a project they are taking on in their spare time, it will or will not move along as their time permits. For now I will leave any noting on it with this until progress resumes.

3) Philly Geek Awards – Did we win?

In the previous entry I had asked folks to nominate ME.mory for “Dev Project of the Year”. It looks like roughly a dozen (if not more) people did so, based on FB comments alone. The nominations have been closed, but we do not yet know if ME.mory will be chosen. If we know (and it turns out we won it) then we will share by the next update here. If we know we did not win, then we will never speak of it again. Otherwise, we are in a comfy limbo.

OK. This is quite a long entry, one which I am happy to have put my heart into. Until next time, take care. I would love to receive feedback from you, so feel free to comment below. Cheers!