Personal Journey with Vision Loss

• Andrew Leland diagnosed with retinitis pigmentosa (RP) as teenager
  • Degenerative retinal condition
  • Initially only noticed symptoms at night during teens/early 20s
  • Early 30s: peripheral vision deterioration began
• Current state: legally blind with severe tunnel vision
  • Has central vision but sees through "narrow porthole"
  • Can see pears arranged in smiley face and photograph of hippo
  • Brain adapts quickly to shrinking visual field
• Adaptation process: initial fear/claustrophobia when losing vision chunks
  • Week later: adjustment to new normal, feels "less blind"
  • Compared to watching movie on shrinking screen - annoying at first, then adaptation

Paradox of Defining Blindness

• Blindness seems obvious (absence of sight) but actually complex/paradoxical
• Paradox of the heap analogy:
  • Ancient Greek philosophical concept using goji berries/sand/marbles
  • Removing single items: when does heap stop being heap?
  • Applied to vision: how much vision loss required to be "legitimately blind"?

Viral Photo Analysis

• Photo of Black woman with white cane looking at phone
• Shared 33,000+ times with caption "If you can see what's wrong, say 'I see it'"
• Public assumption: contradiction between blindness and phone use
• Reveals binary thinking: blind people don't see, therefore shouldn't look at things
• Went viral due to ambiguity, illuminating paradoxical truth

Spectrum vs Binary Nature of Blindness

• Blindness simultaneously binary (blind or not) and spectrum (degrees/styles)
• Different types of vision loss:
  • Inverse of Leland's condition: peripheral vision only, no center
  • Vaseline-smeared glasses effect
  • Saran wrap around head sensation
  • Thick, broken fishbowl vision
  • Very few experience total darkness
• Daniel Kish example: mouth clicking sonar navigation
  • Brain scans show visual cortex activation during DIY sonar use

Misconceptions and Stereotypes

• Damaging stereotypes about blind people:
  • Psychic abilities (some people actually believe)
  • Super hearing/"superpowers" - brain rewiring to boost remaining senses
  • Cannot attend normal school
  • Cannot hold normal jobs
  • Cannot travel independently
• These misconceptions create fear and view blind as "strange/mysterious/off-putting"

Redefining Blindness Understanding

• Important to reserve blindness term for those requiring assistive technology
• Need assistive tech for reading print, walking around
• Cannot correct vision through conventional means
• Blind people can engage in "sighted" activities:
  • Making eye contact
  • Watching movies
  • Checking phones at bus stops
• Author still enjoys sunsets, tree frogs, celebrity Instagram breakfasts while losing sight