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Sep 20th, 2013
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  1. Built to Program - James Edward Gray II @JEG2
  2.  
  3. - I wanted talk about what you're seeing right now. It might not be what you think it is.
  4. - "You don't know what I'm going to do"
  5. - Speaker can't type without special assistance and gets tired the longer the talk goes.
  6. - Hello I'm James. I'm a programmer. Just like you. [ post it notes with question marks]
  7. - People ask speaker a lot of questions.
  8. - "I used require 'csv' somewhere in my code, therefore complicated non-csv related question. Please help." -- Speaker answers pretty much all e-mail ... "If you love me don't e-mail me."
  9. - James' Disability
  10. - "I bet a lot of you think this is personal" -- he thinks that his disability is okay to talk about publicly. If you don't want to know about his sex life don't ask.
  11. - The wait staff often asks his wife what he wants for dinner
  12. - Some of the things you're about to see might be unusual but their his normal. It's hard to measure those things unless he actively considers it.
  13. - "Why are you in a wheelchair?"
  14. - Muscular Dystrophy.. a family of 41 neuromuscular diseases.. Spinal Muscular Atrophy, Spinal Muscular Atrophy, Type 1/Werdnig-Hoffman Disease
  15. - just a few years ago you might find:
  16. - cannot sit unassisted
  17. - has difficulty swallowing
  18. - expected lifespan: approximately age 6
  19. - missing a key protein SMN (survival of muscular neuron ... James has a variant w/ compensating genes coding for SMN2 which lessen his symptomatology
  20. - "What does this disease do to you?"
  21. - "If you hit me in the knee... it still hurts" .. however, no reflex response (he does have reflexes, but the diminished muscles in his legs are unresponsive)
  22. - the short story is one gets weaker over time
  23. - "Are you dying faster than normal?"
  24. - "I don't know and I'll give you the painful truth... you don't know either"
  25. - attacks primarily skeletal muscles, heart is fine... biggest problem is his diaphragm (takes longer to get over bronchitis)
  26. - "Why did you say that you can't move"
  27. - mobility comparison to plant
  28. - usually uses electric wheelchair but switches to manual wheelchair when travelling long distances
  29. - the main reason is gravity... *arch-enemy*
  30. - "Do you get cold easily?"
  31. - yes, diminished muscle layers increase heat loss
  32. - lives in warm climate
  33. - as time goes on, it gets more difficult
  34. - on confreaks James has a talk which illustrates this
  35. - "Why not just put on a sweater?"
  36. - they are restrictive and heavy
  37. - "Wait.. You said we are the same.. but showed how we differ."
  38. - [picture of legos]
  39. - been talking about building blocks, you have different building blocks... but the end result is the same
  40. - "What does M.D. mean to me?"
  41. - slowing down quite a bit, speaker's typing speed is in half.
  42. - know and sharpen your tools
  43. - forced to automate workflows so I can keep up
  44. - helps speaker intimately understanding what he's working on
  45. - projects can and should benefit from this
  46. - "make your changes easier to make and then make your change"
  47. - Understand the economy of action
  48. - Listen, then think, and finally act
  49. - Less is often more
  50. - This applies to your work and your code
  51. - Remember that upkeep matters, soon and a lot
  52. - it applies sooner than you think
  53. - [Picture of Wife]
  54. - Dana (his wife) makes visiting GoGaRuCo possible.. it's a trade-off (mobility, warmth) but working with you (conference members)
  55. - Ask for help
  56. - Illustration of Dr. Hawking in microgravity
  57. - took a /lot/ of help to accomplish, but with a lot of help
  58. - Programming is about people
  59. - Alice in Wonderland rabbit hole beneath every program
  60. - [Work plug] A2B (not sure of spelling) needs more devs.
  61. - Advice
  62. - Get Social
  63. - Parallel to Memory Optimisation talk earlier this morning... Sam Saffron's talk was primarily about people
  64. - Thank you
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