Autistic Future
July 10th, 2016

Beyond Self-Advocacy

I spent some time this week get­ting ready for a train­ing I’m giv­ing at a con­fer­ence next month. This con­fer­ence will be dis­abled-run and large­ly dis­abled-attend­ed. One thing I’ve been con­tem­plat­ing grate­ful­ly as I pre­pare is the amount of usu­al, obnox­ious dis­abil­i­ty event stuff that will just not hap­pen this time around, like peo­ple try­ing to push me into the ill-fit­ting self-advo­cate label. The word that peo­ple usu­al­ly want to use to describe dis­abled-iden­ti­fied peo­ple work­ing on I/DD issues is ‘self-advo­cate.’ When peo­ple call me that, I cringe.

Self-advo­cates, peo­ple with I/DD who know their rights and feel com­fort­able assert­ing them, are a cru­cial part of dis­abil­i­ty advo­ca­cy. Giv­en a venue and the right sup­ports, self-advo­cates can spread that knowl­edge and assertive­ness through their com­mu­ni­ties, empow­er­ing peers to pro­tect them­selves from abuse and neglect and demand greater inde­pen­dence. Cer­tain con­no­ta­tions have seeped into the idea of self-advo­ca­cy, though, con­no­ta­tions of advo­ca­cy ini­ti­at­ed by peo­ple with­out dis­abil­i­ties, infor­mal, advi­so­ry roles, and speak­ing from per­son­al expe­ri­ence rather than exper­tise. All that means that the input of peo­ple who are labeled ‘self-advo­cates’ work on a par­tic­u­lar project or with a giv­en orga­ni­za­tion, their involve­ment is often treat­ed as a lux­u­ry and is some­times very quick­ly pushed aside when self-advo­cates’ voic­es become incon­ve­nient for deci­sion-mak­ers with­out dis­abil­i­ties. None of those things fit my cir­cum­stances as a dis­abled law stu­dent, orga­niz­er, and occa­sion­al social media con­trac­tor and volunteer. 

I ini­ti­at­ed my own advo­ca­cy and con­nec­tion to dis­abil­i­ty com­mu­ni­ty. I decid­ed to seek out Autis­tic com­mu­ni­ty on the inter­net and help build it in Atlanta before law school. Along the way, I picked up skills and decid­ed to make the sig­nif­i­cant invest­ment of get­ting a J.D. I’m seek­ing out roles where the exper­tise I’m devel­op­ing will car­ry weight. As my career pro­gress­es, I will want to move in the direc­tion that most peo­ple do: into posi­tions of increas­ing author­i­ty. These days, I have far more occa­sion use my skills than to speak from per­son­al expe­ri­ence. I talk to talk about how to get eyes on Face­book posts for dis­abil­i­ty-relat­ed orga­ni­za­tions or what­ev­er the case law says about the mat­ter at hand than my own life. The more I obtain skills, the more just talk­ing about my per­son­al expe­ri­ences seems like an inef­fi­cient use of the time and effort I can devote to advo­ca­cy as com­pared to the oth­er things I could be doing.

Still, that does­n’t make my iden­ti­ty unim­por­tant. If we care about self-deter­mi­na­tion for dis­abled peo­ple, and peo­ples, we need to place more author­i­ty over dis­abil­i­ty issues in dis­abled hands. More of the deci­sion-mak­ers and prob­lem-solvers have to come from with­in dis­abil­i­ty com­mu­ni­ties. We need strong self-advo­cates, but we also need ter­mi­nol­o­gy that accu­rate­ly describes the Autis­tic per­son who suc­cess­ful­ly founds and man­ages a local advo­ca­cy orga­ni­za­tion or the per­son with Down Syn­drome on staff who devis­es and runs train­ings for mem­bers of the com­mu­ni­ty. Peo­ple like that aren’t espe­cial­ly rare these days. The term ‘self-advo­cate’ does­n’t ful­ly cap­ture what they are and do as experts, work­ers, organ­ic rather than exter­nal­ly-select­ed com­mu­ni­ty lead­ers, and poten­tial role mod­els for younger peo­ple with dis­abil­i­ties in their com­mu­ni­ties. We may need a new term to fit peo­ple like many I already know, like the one I want to become.

I wish I had one to pro­pose, but, after turn­ing it over in my mind for a while, I haven’t come up with a good answer. If you have one that you think might work, I would love to hear about it in the com­ments. Until then, I’ll keep winc­ing when well-inten­tioned peo­ple with­out dis­abil­i­ties call me a self-advo­cate at meet­ings at con­fer­ences. It will be dif­fi­cult for me to say that I want to be called some­thing else until I can offer up anoth­er term, a suit­able and more accu­rate replacement.