Cure the cure mentality

August 1, 2016


Gradually, I have come to realize that August is a difficult month for me for a variety of reasons. Apart from the heat and humidity, and overall oppressive stench that periodically descends on NYC, there are a number of interrelated advocacy issues within the neuromuscular disabilities community which pop-up in August. These advocacy issues can be emotionally draining and serves to highlight that there is still a great deal of work to be done.


Specifically, August is SMA awareness month, the anniversary of the peak of the "Ice Bucket Challenge" hoopla, the lead-in to the thankfully now defunct annual Labor Day/telethon activities and, this year the unfortunate circumstances of the 14-year-old girl who has decided to enter hospice will be stumbling towards its conclusion. The common thread of the aforementioned is that the lives of people like me are marginalized and in constant need of being cured.


To me, considerations of inclusion, acceptance and community, are far more important. Fortunately, I am privileged to be involved with a growing organization called NMD United, whose purpose is to help unwind the legacy of pity mongering charities that use pity to raise funds. NMD United is dedicated to promoting meaningful interactions between adults with neuromuscular disabilities, in support of living quality and integrated existences.

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