AUTISTIC FUTURE: A FUTURE OF OUR OWN

September 7th, 2017

Telling Personal Stories

Some of the most painful sit­u­a­tions new activists get into revolve around sto­ries. What seems like the chance to do good can end in embar­rass­ment  Even if the por­tray­al, the con­tent or media that comes out of shar­ing a sto­ry, is ulti­mate­ly respect­ful, third par­ties may still project their own prej­u­dices on it. Per­son­al sto­ries told in dig­ni­fied ways can be used in undig­ni­fied ways. There is also the sto­ry­telling trap: it can feel more use­ful than it actu­al­ly is. This isn’t to say that per­son­al sto­ries should nev­er be told, but it’s impor­tant to be aware of the pit­falls of per­son­al sto­ry­telling and how to avoid them.


The obvi­ous risk of sto­ry­telling is that the Autis­tic per­son who has shared a per­son­al sto­ry won’t be heard with respect. It’s the humil­i­a­tion that comes of being treat­ed as a self-nar­rat­ing zoo exhib­it on dis­play to sat­is­fy allis­tic curios­i­ty, as some­thing less than human. This prob­lem is preva­lent at low­er-qual­i­ty autism con­fer­ences. Speak­ers who are new to advo­ca­cy, espe­cial­ly those who are very young, don’t always antic­i­pate the extreme­ly per­son­al ques­tions, con­de­scen­sion, and cel­e­bra­tions of indis­tin­guisha­bil­i­ty which are some­times part of those events.

The expe­ri­ence of show­ing up, try­ing to con­tribute, and being put on dis­play instead of encour­aged to par­tic­i­pate is painful. It has a way of bring­ing up bad mem­o­ries of brush­es with ableism. This can be par­tic­u­lar­ly dis­tress­ing for new­er advo­cates who may not have encoun­tered it before. Encour­aged to stay pos­i­tive, new­er activists may suf­fer in silence for years feel­ing as if some­thing isn’t right and not know­ing they have oth­er options than only say­ing what the allis­tic peo­ple in charge want to hear.

It is often pos­si­ble for advo­cates to avoid sit­u­a­tions where every­one wants them to speak and no one wants them to have thought­ful opin­ions. Research­ing a con­fer­ence or pub­li­ca­tion before agree­ing to speak, write, or be inter­viewed is a way to get valu­able infor­ma­tion about how a nar­ra­tive is like­ly to be treat­ed. Ask­ing, in advance, about the dis­cus­sion top­ics often reveals how much room for opin­ion and expres­sion you will real­ly have. In the event of an inter­view, con­sid­er look­ing into both the reporter’s pre­vi­ous work on autism and over­all rep­u­ta­tion, espe­cial­ly whether past inter­view sub­jects feel that they were accu­rate­ly portrayed.

There is also the dan­ger of being co-opt­ed in oth­er ways. Even a sto­ry you tell in a respect­ful envi­ron­ment, to respect­ful lis­ten­ers, can be mis­used. Some­one can hear a seri­ous thing through the lens of prej­u­dice or infan­tiliza­tion. Because of the impos­si­bil­i­ty of con­trol­ling strangers’ behav­ior, this isn’t always avoid­able. The sto­ry you tell with all the dig­ni­ty you can muster may not always be heard that way. If you decide to tell per­son­al sto­ries which even men­tion your dis­abil­i­ty, all you can do to pre­pare for this prob­lem is aware­ness. Know that it may hap­pen, and know that the indig­ni­ties oth­ers inflict on you don’t dimin­ish your dig­ni­ty as a human being.

There is also a more insid­i­ous prob­lem with sto­ry­telling: you could be accom­plish­ing less than you think. If you tell sto­ries because you are gen­uine­ly try­ing improve con­di­tions for Autis­tic peo­ple or oth­ers with dis­abil­i­ties, it is impor­tant to be atten­tive to where you are talk­ing, who your audi­ence is. Telling your sto­ry to state leg­is­la­tors in hopes of influ­enc­ing how they vote on a par­tic­u­lar bill might improve the law in your state. Giv­ing advice or instruc­tion on a dis­abil­i­ty-relat­ed sub­ject you know well might make some­one more informed. Illus­trat­ing that advice with exam­ples from your own expe­ri­ence might make your mes­sage eas­i­er for some peo­ple to under­stand. Telling the same feel-good sto­ry year after year may feel like tak­ing action, but it may keep your lis­ten­ers com­fort­ably in the realm of what they want to hear. This leaves you stuck like a pro­test­er herd­ed into a pen a half-mile from the intend­ed site of the demon­stra­tion, expend­ing ener­gy to express some­thing with­out get­ting any­where. In per­son­al sto­ry­telling, the sense of recog­ni­tion, the rush of stand­ing in front of a room, and, some­times, the pay can make it hard to take a real­is­tic look at whether any­thing is happening.

The way to address this prob­lem is to think through your con­tent and audi­ence. If you’re chal­leng­ing what peo­ple think instead of telling them what they want to hear, you may do some good. If your audi­ence has the pow­er to change things, what you say is more like­ly, as a prac­ti­cal mat­ter, to accom­plish some­thing. Your odds of con­tribut­ing some­thing mean­ing­ful will rise if you can gain exper­tise beyond your indi­vid­ual expe­ri­ence. If you’re describ­ing prob­lems or solu­tions you think may have affect­ed oth­er peo­ple, con­sid­er learn­ing about the big­ger picture.

Only you can decide when you should and should not share your sto­ry. The best way to make that deci­sion is to to take a care­ful, hon­est look at the spe­cif­ic cir­cum­stances. What are you like­ly to accom­plish? How like­ly is it? Bal­ance the good you think you could do against any cost to your time, mon­ey, and well-being because those things mat­ter. Telling per­son­al sto­ries can con­tribute to the con­ver­sa­tion about how to make things bet­ter for Autis­tics and oth­ers with dis­abil­i­ties. This is prob­a­bly most true where those sto­ries come from Autis­tic peo­ple whose sto­ries dis­pro­por­tion­ate­ly go unheard.

How­ev­er, telling per­son­al sto­ries comes with risks and chal­lenges, par­tic­u­lar­ly the pos­si­bil­i­ties of feel­ing embar­rassed or dehu­man­ized, talk­ing a lot with­out accom­plish­ing much, or both. New­er advo­cates, who should learn these things from advice, too often find out about the pit­falls of per­son­al sto­ries through expe­ri­ence, but aware­ness of the draw­backs and risks is key to deci­sions about when sto­ries are worth telling.

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