Day of Mourning 2017

Tonight, peo­ple will gath­er around the world to mourn per­sons with dis­abil­i­ties killed by their care­givers. Some have loved ones who also remem­ber and miss them. Many were kept so iso­lat­ed by those who would even­tu­al­ly mur­der them that they were large­ly strangers to the world. Their mem­o­ries are lit­tle more than names we read at vig­ils because they were ours, though we did not know them, and maybe an old school pic­ture online. It’s good that we remem­ber them. We wouldn’t be peo­ple, much less a peo­ple, if we didn’t remem­ber our dead. While we mourn, though, we can’t for­get the living.

If things go bad­ly with health­care and ben­e­fits law, more peo­ple will die in the months to come. There won’t be many col­or­ful sto­ries of vio­lence to attract media atten­tion. These deaths won’t make the news. We won’t hear about most of them. They will hap­pen qui­et­ly in ERs, fam­i­ly homes, and nurs­ing homes. Peo­ple who are just bare­ly hang­ing on at the mar­gins with the access to ser­vices and care that they have now will fade away almost unno­ticed. Many more will slide into a liv­ing death in facil­i­ties. The peo­ple we loose will look like the aver­age per­son on a Day of Mourn­ing vig­il list: extreme­ly vul­ner­a­ble because of youth, age, or a sig­nif­i­cant impair­ment, iso­lat­ed. They’re ours, too, whether or not we know them, and we owe them our loy­al­ty, our advo­ca­cy. Care about them, too. If you live in the U.S. and are for­tu­nate enough to be able to attend a vig­il, think about reach­ing out to your rep­re­sen­ta­tive first.

Who Will We Be?

Com­mu­ni­ties are fun­ny things. They don’t exist until a crit­i­cal mass of peo­ple believe they do. They’re sto­ries that come to life if peo­ple tell them loud and long enough. Behave as if a peo­ple exists, go through the motions deter­mined­ly until it stops feel­ing arti­fi­cial, and some­thing will start to solid­i­fy. The sto­ry of an Autis­tic peo­ple that we are telling togeth­er becomes more tan­gi­ble every day, but we have time to make deci­sions while things are still mal­leable. Espe­cial­ly as we enter a time of adver­si­ty in the U.S., we need to make choic­es about what turns this nar­ra­tive will take.

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Net Neutrality and Us

a map of the internet on a black background. it looks like neural connections

By The Opte Project — Orig­i­nal­ly from the Eng­lish Wikipedia; descrip­tion page is/was here., CC BY 2.5,

Peo­ple are born, labeled, and self-iden­ti­fied with autism all the time, but the dis­tance from there to “dif­fer­ent, not less,” the neu­ro­di­ver­si­ty par­a­digm, cul­ture, com­mu­ni­ty, and becom­ing Autis­tic is a big­ger leap. It’s not an intu­itive move because it’s down­right counter-cul­tur­al in a soci­ety that often treats dis­abil­i­ty as a less­er, unde­sir­able, less human way of liv­ing. Con­sid­er how you or your loved one cov­ered the dis­tance from diag­no­sis or real­iza­tion to here. It prob­a­bly had some­thing to do with the inter­net. Some peo­ple find out about autism online, real­ize it describes their expe­ri­ences, and come to iden­ti­fy with it or seek a diag­no­sis. Some peo­ple grow up know­ing about their dis­abil­i­ty and even­tu­al­ly find parts of the inter­net where peo­ple teach them a nar­ra­tive that has more to offer the Autis­tic indi­vid­ual than the main­stream assump­tion of infe­ri­or­i­ty and accep­tance of the med­ical mod­el. A lucky hand­ful of peo­ple have had some­one sit down and explain neu­ro­di­ver­si­ty and Autis­tic iden­ti­ty IRL, but the peo­ple offer­ing those things usu­al­ly picked them up in Autis­tic regions of the internet.

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New Year’s Resolutions for the Autistic People

Ominous clouds gather and darken above a landscape.

A storm is com­ing. Are you ready?

We’re head­ed for hard times. Our move­ment is on the defen­sive. The ideas that ani­mate these times don’t bode well for us. That had me think­ing about what our absolute neces­si­ties are, what we have to have and do to remain our­selves. I only came up with two things:

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The Harsh Realities of Rudolph

an image of Rudolph from the 1964 claymation special

The hol­i­day clas­sic Rudolph the Red Nosed Rein­deer is time­ly this year. The (affil­i­ate link) beloved hol­i­day spe­cial has a facial­ly pos­i­tive mes­sage about dis­abil­i­ty and diver­si­ty, but the sto­ry con­tains an unspo­ken para­ble about dis­abil­i­ty in our soci­ety that may be a lit­tle too dark for the hol­i­day sea­son. The sto­ry tracks The Rudolph spe­cial, of course, describes how a young, mag­ic rein­deer from the North Pole finds a valu­able role in his com­mu­ni­ty despite being ini­tial­ly ostra­cized for an unusu­al phys­i­cal fea­ture: a glow­ing red nose. In the course of his jour­ney to find a place in the world, Rudolph comes across the castoff inhab­i­tants of the Island of Mis­fit Toys and even­tu­al­ly arranges their res­cue. The sto­ry is sur­pris­ing­ly pos­i­tive, sur­pris­ing­ly open to dif­fer­ence, con­sid­er­ing that it is a com­mer­cial piece from the mid-six­ties, in that it has a pro­tag­o­nist with a kind of dis­abil­i­ty, and he finds social accep­tance because of, rather than despite, his abnor­mal­i­ty once he man­ages to find a way to contribute.

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