Merry everything.

I have needed to have Lolita explained to be since forever.  Thank God,



A funny thing happened this weekend as I was lying awake worrying about needing to appeal an application for SSDI/Medicaid (due mostly to an error my interviewer made because she had never heard of primary sclerosing cholangitis and mistakenly filled out the form as if it were a type of cancer): a hashtag riot broke out.

Disabled people are well aware of the ways we are used as inspiration porn when not being told by abled people that we are handling our illnesses and other disabilities wrong (pray more! go vegan! go organic! go paleo! suck it up! yoga! positive thinking! laws of attraction!!?!?!?<-that one almost seems to demand a whole separate essay on entitlement and assumptions about others’ oppression and misfortune, but I’ll move on for the sake of length).  That the #SoInspired outbreak took place around the anniversary of Stella Young’s death seems like a fitting tribute to her work to dispel the myth that disabled people exist to be inspirational and our other work and accomplishments either don’t exist or serve as a side note to our real purpose, i.e. making abled people feel better about their own lives and opportunities.

For those who haven’t heard of Stella Young or the pain caused to disabled people by inspiration porn, here is an excellent introduction:

After the stress and aggravation of reading that my medical care is still not covered despite being far beyond my or my family’s ability to afford, reading how far from alone I am in wading through unsolicited and usually bad advice, thoughtlessly unkind comments, and being forced to deal with institutions like hospitals and government bureaucracies that often seem to be designed more to prevent me from accessing necessary care than to provide it was both heartbreaking and comforting.

I needed to hear from so many others that I am not the problem.  My disease is not the problem.  The way our society handles people like me and diseases like mine creates problems.  This (to respond to the frequent unknowingly insensitive remark “I don’t know how you stay positive!”) is how I do it.  Remembering that the problem is a society that disables people like me and the many, many others who took over the hashtag #SoInspired this weekend gives me hope because a society can be changed if the people who create and live in it choose to do so, which leads me to a secondary hashtag, #ActuallyInspired, which was simultaneously used to give credit to disabled people who really do inspire us.  People like Stella Young, Dominick Evans, and the many, many others who do not use our lives and difficulties to make abled people feel better about their own lives, but instead use their voices to bring awareness and hope to the disabled community.  It’s okay to be inspired by disabled people, but ask yourself next time you see a meme using someone’s disability to make a point or inspire you to make the most of your life, ‘Am I inspired by this person as a person or as a symbol for hardship?’  It’s flattering to actually inspire someone because of something one has done well, but to be told that getting out of bed and not committing suicide every morning is an inspiration is pretty insulting.

rare but not alone

One of the things that encourages me a lot while I deal with having a rare disease is the online community of people who have the same rare disease.  I wouldn’t wish it on anyone, but when even doctors have to google your diagnosis the first few times they see you, it’s nice to find anyone who can relate.  Another PSCer shared this the other day and I love that he got his liver and that he has used both of his leases on life to better others’ lives.  Mr. Bilikopf is a minion hero for sure.

Of Prisoners and Miracles