my opinion about studying disabled people and their rare disabilities is this:
even if you are the only human being on earth with a specific medical condition, you should not be expected to spend your singular only lifespan being studied, examined, tested, and written about. it can be asked of you, but you should be able to say “no”.
even if it’s for the “greater good”. even if it’s to “advance science” or “save future lives”. you should have to consent to being studied every single time.
















