Monday, June 5, 2017

Lupus Foundation of Bangladesh Visit

#DisabilityJustice post: the universe continues to bring hope and strength in my life in the most unexpected ways. thanks to my Lupus article in The Daily Star, i connected with and met up with some of the board members of the Lupus Foundation of Bangladesh (LFB) on april 3rd, 2017.

LFB consists of doctors, patients, and allies that serve Lupus patients in Bangladesh with access to clinical support, counseling, funds for medicine and the many other costs of having a life-long illness, and are in the process of creating alternative job/career opportunities for patients (Lupus patients are predominantly women) who can't work full/part-time or at all thanks to capitalism, hostile workplace environments, and ableism which reinforce practices that make it difficult for Lupus patients to stay employed -- even if the workplace is supportive and have wellness measures in place, we are still unable to continue working because of the disease's unpredictable symptoms (we quit). there's a lot of guilt around not being able to work like able-bodied folks (we get tagged as unreliable or dishonest), even if we've got skills.

it's hard to imagine the perfect workplace when as a society we've not learned to be inclusive or practice inclusivity in ways that create alternatives for the bodies that can't keep up in the one we've modeled as standard. i'm learning too as i navigate spaces where naming what's going on in my body (as hard as it is), is important for my personal wellness and for allies to learn (as hard as it is) to support a disabled body. we will #survive! #lupus #lupusawareness #lupusfoundation

my lupus sister farhana (middle) & mithila (right)
with some of the members of the Lupus Foundation of Bangladesh

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