I’m Sara Hendren. It’s great to be here. I am an artist. I teach at an engi­neer­ing school called Olin College, and I just pulled togeth­er these slides part­ly in response to what I’ve heard just now, because I want peo­ple to learn about Olin. It’s a tiny lit­tle engi­neer­ing school. All the stu­dents get engi­neer­ing degrees, mechan­i­cal, elec­tri­cal, com­put­er, soft­ware, hard­ware, etc. And we are by pol­i­cy pret­ty much 50/50 men and women. We have a long way to go in terms of race or class, but Olin was start­ed twelve years ago in part to fix [inaudi­ble] a bro­ken dis­ci­pline of engi­neer­ing, because of the vast imbal­ance between men and women. Nationwide the major of engi­neer­ing is 80% men and 20% women, so we’re try­ing to rein­vent the way it’s done and a lot of that, so I’d love to talk some more about that sometime.

But I’m here because my research area is in tech­nol­o­gy and abil­i­ty and dis­abil­i­ty. So I’ll talk not about soft­ware in par­tic­u­lar, because I’m not a coder or pro­gram­mer, I’m not an engi­neer. Again I’m an artist and design­er, but I want to talk about a gen­er­al dis­po­si­tion toward abil­i­ty and dis­abil­i­ty that I try to embody in my own work and the work that I do with stu­dents. That dis­po­si­tion is a kind of pro­duc­tive uncer­tain­ty in engi­neer­ing and design. So whether we’re talk­ing bout hard­ware or soft­ware, a kind of pro­duc­tive uncer­tain­ty around abil­i­ty and tech­nolo­gies (I’ll say more about what that is.) and why would that be impor­tant through­out ability.

Well, con­tem­po­rary media in US cul­ture, and in lots of places in the world, [inaudi­ble] pret­ty pop­u­lat­ed with images of pros­thet­ic tech­nolo­gies and assis­tive devices that restore func­tion­al­i­ty to the human body by use of replace­ment parts and so on, and many of these tech­nolo­gies are fan­tas­tic. They’re very well [inaudi­ble], right? And as a result, not a week goes by that some­one does­n’t email or tweet at me some­thing about the amaz­ing new high-end pros­thet­ic run­ner’s legs, for exam­ple, or apps for peo­ple who are blind. And again these things are great, but the prob­lem is that these sto­ries have an over­whelm­ing­ly mono­lith­ic nar­ra­tive, and it’s the one you’re look­ing at right now, this kind of breath­less head­line about tech­nol­o­gy. So it’s like Ooh, DARPA’s Crazy Mind-Controlled Prosthetics Have Gotten Even Better.”

My expe­ri­ence as a per­son who’s a rel­a­tive of, and fam­i­ly mem­ber of, and friend to and ally of peo­ple with atyp­i­cal bod­ies and minds of all kinds, I under­stood that this media sto­ry is real­ly actu­al­ly in sharp con­trast to the wild­ly vari­able expe­ri­ence of peo­ple in their bod­ies and in their heads. So I want to encour­age young engi­neers and design­ers to think about these com­plex­i­ties. I’ll give you a kind of example.

There are these real­ly inter­est­ing tech­nolo­gies that you think of, that are the myo­elec­tric hand that has four­teen grip pat­terns and is $90,000 and real­ly quite impres­sive. Again, I think this is great. There’s a sto­ry here about return­ing this per­son­’s nor­ma­tiv­i­ty in the form of his wed­ding ring and so on. But things get a lot more com­pli­cat­ed. [inaudi­ble] not a thing you’ll see all over the news­pa­pers, but take for instance deafness.

Photo of the side of a child's head, with his cochlear implant in view.

This is an image of a cochlear implant. Probably some of you are famil­iar. A tremen­dous amount of R&D funds have gone to cre­at­ing cochlear implants which grant back some hear­ing to peo­ple who are born deaf. This is an entire line of engi­neer­ing that’s geared toward ther­a­peu­ti­cal­ly treat­ing deaf­ness as a non-normative state, but the fact is that if you go to Gallaudet University, which is an all-deaf cam­pus, you’ll find design atten­tion to things like this, which is called DeafSpace.

It’s an archi­tec­ture pre­cise­ly geared around accom­mo­dat­ing deaf­ness as a form of com­mu­ni­ca­tion. The sight­lines are real­ly long (because the lan­guage is visu­al, after all) and these kinds of things are fork­ing paths. There is a kind of ther­a­peu­tic log­ic to this kind of tech­nol­o­gy, and there’s a kind of accom­mo­dat­ing and hon­or­ing dif­fer­ence that goes into this kind of archi­tec­tur­al scale sys­tems design. It’s pos­si­ble, of course, to affirm both of those things, but at some lev­el they are in con­fronta­tion with one anoth­er, what counts as nor­mal, what’s accept­able in the human body.

Photo of a small robot on a table with its arms raised, children behind mimicking the pose.

Autism is anoth­er exam­ple. [It’s] very high­ly con­test­ed and hot­ly debat­ed, whether autism is a true dis­or­der, as it’s often called, or whether it’s a form of neu­ro­di­ver­si­ty in the way that nature hon­ors bio­di­ver­si­ty. Here for instance you’ll see lots of R&D and engi­neer­ing research dol­lars going toward the devel­op­ment of social robots for use with chil­dren in ther­a­peu­tic con­text. The robots are thought to be a kind of non-threatening, low thresh­old and reme­dia­tive way to teach young peo­ple about things like facial recog­ni­tion and expres­sion and emo­tion and so on. Again you’ll see lots of university-based use of social robots in this way. 

But there’s also been in the last ten years a real­ly inter­est­ing devel­op­ment out of Denmark. A father who has a son who iden­ti­fies as autis­tic start­ed an IT firm that’s staffed entire­ly with con­sul­tants who also iden­ti­fy on the autism spec­trum. Rather than think­ing of this as a char­i­ty or a sort of spe­cial case, he built with a kind of bot­tom line log­ic a staff of IT con­sul­tants based on their cog­ni­tive strengths, not on their dif­fer­ences. They alert their clients to the fact that their rela­tion­ship to their con­sul­tant may be slight­ly dif­fer­ent than the one that they’re used to, but they promise to deliv­er because it turns out that in the cog­ni­tive pro­file of peo­ple who iden­ti­fy as autis­tic, there’s quite a lot of real­ly strong gifts in terms of the detail and lin­ear focus that IT requires. 

So here again it’s a kind of real­ly big dis­tinc­tion between turn­ing our atten­tion to and devel­op­ing devices and prod­ucts that ther­a­peu­ti­cal­ly treat what have come to be med­ical­ized as dif­fer­ences, ver­sus sys­tems design and insti­tu­tion­al engi­neer­ing that hon­ors dif­fer­ence and in fact pro­motes it.

These are just two of many many exam­ples, and the com­plex­i­ties are at the heart of research and advo­ca­cy that’s in what’s called dis­abil­i­ty stud­ies. Disability stud­ies isn’t real­ly a field so much as it is a point of view across dis­ci­plines. But there’s a con­vic­tion in gen­er­al shared polit­i­cal­ly by peo­ple in the field that some­times peo­ple with atyp­i­cal bod­ies and minds are ask­ing for tech­nolo­gies and devices that help them gain a kind of culturally-defined nor­ma­tiv­i­ty back. Sometimes that is the case, and so, great. 

But some­times peo­ple with atyp­i­cal­i­ties are ask­ing for a more accom­mo­dat­ing world, and that is I think the more ambi­tious chal­lenge to the crowd who’s there today. That means sys­tems and tools and build­ings and economies, even, that hon­or dif­fer­ence. And tech­nolo­gies to help us ask those ques­tions, to be provoca­tive in the prod­uct space and in the sys­tems space, pre­cise­ly about what counts as nor­mal, what counts as able, who’s inde­pen­dent and depen­dent, and so on.

So very prac­ti­cal­ly speak­ing, what can young pro­gram­mers and engi­neers do in the face of these kinds of fork­ing paths and I think the biggest thing is to ask peo­ple them­selves what it is that they want. Even in the human-centered design era, it’s still pret­ty rare that you’ll have peo­ple with atyp­i­cal bod­ies and minds involved way up in the stream of research and devel­op­ment for tech­nolo­gies that are intend­ed for them. There’s far to lit­tle of that. And hon­est­ly I think there’s too lit­tle involve­ment of peo­ple with dis­abil­i­ties in their own tech­nolo­gies because well-meaning able-bodies folks are ner­vous about doing it wrong. Using the wrong words, or gen­er­al awk­ward­ness around what to do or say, and I’ve seen this a bunch as some­one who is able-bodied but a fam­i­ly mem­ber of peo­ple with atyp­i­cal bod­ies and minds. I’ve seen a lot of that awk­ward­ness, and I can tell you that that fear is often unfound­ed. There real­ly are rich part­ner­ships to be cre­at­ed if you seek out self-advocates and lis­ten well and ask ques­tions and spend time doing the research. 

I think what ani­mates me in this kind of broad notion of access and acces­si­bil­i­ty, with dis­abil­i­ty it tends to be a kind of bleed­ing heart issue with a lot of soft piano music in the back­ground, and I think that’s not nec­es­sary. I think it hurts atyp­i­cal peo­ple being part of the con­ver­sa­tion. I encour­age young design­ers and engi­neers to just be inter­est­ed in human bod­ies and capac­i­ties, full stop, with­out a lot of pre­con­ceived notions about bro­ken­ness and whole­ness, and good things [will?] result.

I do want to give one shout out to a shin­ing bea­con of an exam­ple, and that’s DIYAbility in New York. They’re a part­ner­ship between an occu­pa­tion­al ther­a­pist named Holly Cohen and a pro­gram­mer named John Schimmel, and they work one-on-one with young peo­ple with dis­abil­i­ties of all kinds to fig­ure out what it is that they want to build, and they also help those young peo­ple build for them­selves. So they also scaf­fold pre­cise­ly the kind of design and engi­neer­ing peo­ple can be build­ing for them­selves. It’s pret­ty rad­i­cal and pret­ty rare, still. So I hope you’ll look them up.

Again, I just want to say that the need for bet­ter tools and soft­ware and design is very real, but we also need pro­duc­tive uncer­tain­ty about who’s ask­ing for which kind of assis­tance, who’s not, and who the design­er or pro­gram­mer is in that process.

Thanks for includ­ing me.

Further Reference

Overview page at the Studio for Creative Inquiry’s web site.