Disability Culture Meets the Transhumanist Condition

With apolo­gies to Ed Regis.

Modern sci­ence has caused hu­mankind to de­velop bet­ter cures and patches for once-de­bil­i­tat­ing con­di­tions; peo­ple of­ten sur­vive mal­adies which would have kil­led them not long ago. In the wake of this and of a re­cently chang­ing at­ti­tude re­gard­ing how cog­ni­tively dis­abled peo­ple might see the world, a dis­abil­ity rights move­ment came into swing in the 1970s. In­creas­ingly, the at­ti­tude of dis­abled peo­ple was that it wasn’t in­her­ently bad to be dis­abled; a dis­abil­ity could be an in­trin­sic part of a per­son’s self-image. Some peo­ple in wheelchairs, for in­stance, want badly to be able to walk—but some do not, and the main­stream at­ti­tude has his­tor­i­cally not val­i­dated those peo­ple’s ex­pe­riences. This is where dis­abil­ity cul­ture in­ter­sects the tran­shu­man­ist move­ment. If it is pos­si­ble to iden­tify so strongly with a phys­i­cal dis­abil­ity as to not want any cure, how does that mesh with be­liev­ing that it is de­sir­able to im­prove one’s mind and body? Is it pos­si­ble to iden­tify as a hap­pily dis­abled tran­shu­man­ist?

This does not in­tend to sug­gest that tran­shu­man­ism is a move­ment of eu­genic war­riors; it’s hard to imag­ine any­one sug­gest­ing that folks who don’t sign up for the “Harm­less and easy cure for senes­cence” shot be ster­il­ized. How­ever, de­spite the fact that hardly any­one would iden­tify em­self as an eu­geni­cist (a fine thing to call your­self once-upon-a-time in Amer­ica, un­til the Nazis ren­dered the term un­pop­u­lar,) liter­ally eu­genic at­ti­tudes in so­ciety pre­vail, e.g. the preva­lent be­lief that peo­ple with Hunt­ing­ton’s dis­ease or schizophre­nia who re­pro­duce are cruel for haz­ard­ing the in­her­i­tance of their con­di­tion.

One won­ders what dis­abil­ity cul­ture would look like if peo­ple who are to­day in wheelchairs had ac­cess to tech­nol­ogy that could re­pair their legs and al­low them to walk. I won­der if peo­ple with con­gen­i­tal dis­abil­ities which would to­day re­quire a wheelchair would have a choice about be­ing cured, or whether the cure would be im­ple­mented in in­fancy. In 2007, a girl named Ash­ley who has an un­known brain di­s­or­der and can­not com­mu­ni­cate or move her­self effec­tively was given a se­ries of rad­i­cal pro­ce­dures—hys­terec­tomy, mas­tec­tomy and high es­tro­gen doses—in­tended to make her eas­ier to take care of. Was the liter­ally non-con­sen­sual hys­terec­tomy an eu­geni­cist pro­ce­dure? An im­moral one? Was it in the spirit of tran­shu­man­ism? In a fu­ture where Down syn­drome can be pre­vented with a pre­na­tal vac­cine, would such a vac­cine be moral? How about vac­cines for “low-func­tion­ing” autism? At that rate, surely it would be pos­si­ble to vac­ci­nate for Asperger syn­drome, de­pres­sion, and ADHD, con­di­tions which many peo­ple dis­like and/​or dis­like hav­ing. (As an aside, with all the med­i­cally-re­pu­di­ated yet wide­spread fear about vac­cines caus­ing autism, one can only imag­ine the panic an autism vac­cine would cause.)

I don’t have an­swers to these ques­tions. I have feel­ings and im­pres­sions, but those are not very use­ful. The is­sue can­not be solved unilat­er­ally by say­ing that only those who en­thu­si­as­ti­cally con­sent to cer­tain med­i­cal pro­ce­dures should be given them, be­cause many peo­ple are in­ca­pable of giv­ing clear con­sent, as in the Ash­ley treat­ment. Nor can it be clearly solved by sug­gest­ing only pro­phy­lac­tic mea­sures against dis­abling con­di­tions, be­cause cer­tainly some par­ents would forego those mea­sures. In a tran­shu­man fu­ture, is the birth of a non­ver­bal autis­tic a pre­ventable tragedy? Is it less of a tragedy if the child is a sa­vant? Nor can one say that only con­di­tions with­out an ac­com­pa­ny­ing cul­ture should be erad­i­cated. Even if the defi­ni­tion of ‘cul­ture’ were not elu­sive, HIV/​AIDS has a definite cul­ture about it, and few peo­ple would sug­gest that HIV should not be erad­i­cated.

It is not use­ful to ig­nore the role of dis­abled peo­ple and dis­abil­ity cul­ture in the tran­shu­man­ist move­ment. I be­lieve that the fu­ture has a lot to offer many peo­ple with dis­abil­ities, in­clud­ing those who do not want a ‘cure.’ Tran­shu­man­ism can en­com­pass in­ter­est in di­verse AAC meth­ods, and I be­lieve it should. Sim­ple key­board tech­nol­ogy has made it pos­si­ble for many oth­er­wise non­ver­bal peo­ple to com­mu­ni­cate elo­quently, as have Dy­naVox de­vices and var­i­ous iPad apps. It would delight me to see wide­spread dis­cus­sion about more pow­er­ful AAC de­vices, which could en­able us to per­ceive and act on the de­sires of those who can­not now com­mu­ni­cate.

Nor has tech­nol­ogy reached its limits in helping those with phys­i­cal dis­abil­ities; wheelchairs are gen­er­ally clumsy and heavy, and ex­pen­sive for peo­ple with­out in­surance—nearly in­ac­cessible to peo­ple who live with­out in­surance in im­pov­er­ished ar­eas of the world (or of the United States.) Peo­ple who, like Stephen Hawk­ing, be­come par­a­lyzed by mo­tor neu­ron dis­eases, do not all pos­sess Stephen Hawk­ing’s ac­cess to high-tech com­mu­ni­ca­tions de­vices (for which prices be­gin at thou­sands of dol­lars.) And peo­ple with dis­abil­ities like epilepsy or cere­bral palsy are still of­ten abused for their “de­monic pos­ses­sion” or in­ac­cu­rately stereo­typed as men­tally dis­abled. The tran­shu­man­ist move­ment tends to ad­vo­cate aug­men­ta­tion sans cure as far as phys­i­cal dis­abil­ities are con­cerned, but there are peo­ple with mixed feel­ings about tran­shu­man­ism as it ap­plies to dis­abil­ity.

Dis­abil­ity is a hot but­ton topic sur­rounded by widely vary­ing spec­tra of be­liefs. It di­rectly af­fects hu­mankind and is not of­ten dis­cussed ra­tio­nally be­cause of the sub­jec­tive ex­pe­riences peo­ple have had with vary­ing dis­abil­ities. (The mother of a non­ver­bal autis­tic says, “There should be a cure for autism; I want my son to say he loves me.” A non­ver­bal autis­tic com­mu­ni­cat­ing by AAC says “There shouldn’t be a cure for autism; I want peo­ple to learn how I com­mu­ni­cate my af­fec­tion.” Their con­flict­ing be­liefs do not pre­dict rad­i­cally differ­ent an­ti­ci­pated ex­pe­riences.) So a ra­tio­nal, clear di­alogue about dis­abil­ity is vi­tal—for dis­abled peo­ple, their friends and fam­i­lies, and the world at large—in or­der to in­te­grate these iden­tities and ex­pe­riences into the fu­ture and pre­sent of hu­mankind.