[Music] so this this tweet was written maybe about three months ago by Lego I'm gonna read it to you real quick it says we are super excited to introduce Lego Braille bricks a new product from the Lego foundation that will help blind and visually impaired children learn Braille in a playful and inclusive way so below the tweet was a video and I'm actually going to share that video with you right now maybe [Music] [Music] okay so can we bring the audio down a little bit so as as we're watching this video I want you to ask yourself how does this video make you feel are you feeling inspired are you feeling empathy is your faith restored in humanity do I have any blind friends in the audience funny I I've shown this video a few times I have yet to encounter any blind people in the audience even though many of my design friends are actually behind and so we do exist but if there was a blind person in the audience they're gonna tell you something different they might tell you this video makes them angry that they feel exploited why right there's no audio there's no audio how could they possibly know what was in it this video it may have been about them but it sure as hell wasn't for them let's check out another ad I have any of you seen this this ad it was Nike sign their first ever disabled athlete has anybody seen this well the video felt really really good to people who watched it but it's actually not even a four seconds into the ad when Nike it's not clicking through sorry well it'll click through it's not even four seconds through when Nike tells us that that Justin suffers from cerebral palsy and this is on world cerebral palsy day and again I feel like this actually relies on this slide so there it goes so Nikes telling us that Justin suffers from cerebral palsy they announced this once world cerebral palsy day and if the clicker worked there it is but does this look like somebody who is suffering to you right what Nike didn't realize was that I'm so sorry this would be a little bit distracted but the thing is if you google signing day I'm just one second so it's the night this ad progresses we learned IQ starting Justin with a professional contract but if you google signing day what you're going to see is this image after image of athletes sitting at a table with a pen in hand being treated as a professional because this is what this is right it's a professional contract Nike didn't realize that what they were telling us is that they didn't actually see Justin as a valuable sign Eenie the simple act of turning a professional contract into a gift tells us that Nike thinks it's their charitable gesture that creates value and correct me if I'm wrong but this is probably not a message that you would actually want to send to disabled people but again if you really watch this ad you would realize that disabled people weren't the intended audience everyone else was like you was simply using us to inspire you this is actually why I started my design talk to you today by talking about how brands depict their interactions with us because what happens is is when a designer gets a design brief about disability what they do is is they go online and they search disability and design and the things that come up aren't actually things that disabled people are saying what comes up are these these stigmatizing interactions so what my organization did is is we created a website called critical access and what critical access is this is a repository of disability representation and media so what we've been doing is we've been uploading ads to this website if you look at the upper right you'll see that the upper right-hand corner is filled in and the reason this is is because critical access is actually a matrix and what we've done is we've put in a whole bunch of disability tropes that are all rooted in disability studies and if you look at the matrix you'll see at the top is amplifying the bottom is stigma the left side is traditional and the right side isn't emerging this is why we actually filled in the upper right-hand quadrant is is because we want brands to aspire to reaching this upper right-hand quadrant in their ads the thing that we didn't realize when we began creating this is is that we were creating a data set but we quickly realized some interesting and frightening to us trends one of the first things that we began to do when we realized we were creating a data set is we went through all of the ads and we counted the amount of words a disabled person speaks we then went onto YouTube and we then organize and analyze the comments and one of the first trends we realized is is that the more words a disabled person speaks the less believable the ad is perceived to be there's other trends that we've we've actually started tracking now one of them is is that brands frequently use disability as a marketing ploy so what they'll do is is they will go and they will announce a an initiative and and what happens is that they get a lot of good PR from the initiative and then after they get that PR they're no longer incentivized to follow through with the initiative and so what we've been doing is is tracking brands that announce things but never actually do them and there's another really big one which is that a lot of brands actually claim to be the first which ultimately serves to erase a lot of disabled people also if you actually go on to the critical access website you'll realize that there's no ads that feature a disabled person of color I think advertising hasn't quite realized that disabled people of color exists so but back to the the trend about claiming to be the first thus erasing disabled people so a couple of years ago I happen to cross a disabled fashion designer from the 1950s her name was Helen Cookman and she wrote this book called functional fashions for the physically handicapped and in the book you go through and what you realize is all these all these things that we are actually sort of construing as adaptive fashion right now were actually created by Helen back in the 1950s but what you have is is brand after brand coming out Tommy Hilfiger Zappos Target and every time they come out with an adaptive brand they say that they're the first thus erasing everybody that came before them and this is actually why so many disabilities scholars such as Chauncey Fleet Meryl Alper and Cynthia Bennett were so frustrated with the Lego tactiles or the Lego Bratz braille bricks advertisement so if you look at this image this shows you the Lego Braille bricks but if you actually look at this image what you're seeing is something called Lego it's it's actually called tactiles and this these tactiles were created by a blind family in the 1980s and so when when Lego came out with the Lego Braille bricks and claimed to be the first they ultimately not only did they erase all the work of tactiles but they essentially put the tactiles family out of business and this is actually how it continuously happens is is the things and disability that we radically fight for never cease to turn into things that are empathetically done for us so I created something called the width fellowship the thing that I started realizing was is if you go on to Google and you type in the phrase design for disability you'll discover that it yields more than 10 times as many search results as disability design this idea that we are recipients of design has embedded itself into our language but it's quite simply not true does anybody here use finger works no so back in 1998 there was this guy his name was Wayne westerman and he had some carpal tunnel and some tendinitis but he decided he wanted to create a technology that would allow him to continue working and so he created something called finger works and then in 2005 Steve Jobs bought it it's the iPhone touchscreen right so who here uses finger works right so this idea that we are recipients of design is quite simply not true if you look throughout history what you realize is is that it's actually disabled people who are creating world-changing innovations it is us that invented the bicycle we created the Internet the iPhone touchscreen email cruise control curb cuts that the list goes on and on right but we are perceived as recipients so I created the whiff fellowship as in design with disability and something really interesting started happening pretty quickly which is that brands would come up to me and they'd say oh so you're talking about co.design and right with this co.design and I said no no with is not Co design at all with us the antithesis of Co design right so what's the difference well in Co design it's the institutions and it's it's the people in power who get to decide when and how a disabled person is included but with with is a disabled person inserting themselves into process early on with the with fellowship I made a rule for myself where I wouldn't tell stories about with fellows to validate our successes with the fellowship because this is one of the many ways in which disabled people our stories tend to be used to exploit us well what happened was is in Sheena I'm telling a story about the with fellow so what happened is is one of the with fellows was asked to do a podcast about her work she's a really talented designer and as she was doing the podcast she happened to mention me and so she asked if they would also interview me for the podcast and I was thinking to myself and I realized well if she's already like gonna be in the podcast I have this story it's a really good story one that I'm not gonna tell you I've just really good story that I'm going to tell about her so I tell this story and what I didn't realize happened afterward was is that they had called her back in to interview her again and what I inadvertently had done was is when I realized when the podcast came out was I had actually shifted the story so that she had become a recipient of my good deed so we have to be really really careful about the ways that we depict disability which is why it's so important to analyze and and and push back on these dynamics because when we do something like this happens where Lego changes right so this is a tweet from a couple of weeks ago they say everybody should be able to enjoy a Lego play which is why we are excited to launch Lego audio Braille audio and Braille instructions for more information visit this website so again like the first ad this one also had a video which I'm going to play for you here these blind children are building using Lego audio and Braille instructions a free service that gives visually impaired people a new way to build so if you could bring the audio all the way off so Matthew Shiffrin is a disabled designer who had approached Lego about an idea right and now not only did Lego add audio descriptions to the video but they also credited Matthew Shiffrin right and so this is the work that I'm very very focused on doing and the thing that I have been endlessly focused on is getting idea to pay attention so I have been telling a particular story for well over a year now and I've gotten sort of sick of the story but a couple of weeks ago I was at an event and some people from idea we're working there and I discovered I'm basically famous within I do and so now I just tell the story with even more gusto so a couple of years ago I deal had approached me they said that they wanted to show me something so they invited me to come into the office I go into the office and they basically say to me we have created this technology that's intended to get disabled people hired and I said great what disabled people did you hire to create this technology that's intended to get disabled people hired and they were basically like none right and then they showed me the door and I was pissed and I started thinking about it and what I realized was is that I actually feel like Design Thinking may actually be the problem right so what what is design thinking the way that I understand it is it's it's the approach to design it happened in about the 1960s when you had a group of really really powerful white men right these are people who are at the top of their profession they are aligned with the greatest institutions in the world and the creating products that filled the homes of millions of people all over the world and they started realizing that design wasn't reaching everybody so they created a system built on empathy to fill in those gaps and the thing that I argue is is that while much good has come from design thinking it has an adventure tonight of that we are recipients rather than drivers of design so I have begun proposing an alternative which I call design questioning and what I believe is is when we are finally able to question the systems that disable us everyone involved stops seeing our bodies is the problem so how do you you do design questioning well my understanding is is design questioning looks at design thinking from the users perspective so in step one right in step one of design thinking what we do is is we cultivate empathy through observations and interviews but if you were to actually speak to a disabled person what you would find is is that this this step feels a little bit less like empathy and a little bit more like designers are gleaning our ideas and our life hacks and then they're using those two and they're selling them back to us as inspirational do good without ever actually giving us credit it makes me think of the story of oXXO kitchen products do you you know acts oh it's there they have like these gummy tactile handles up until a lot of week ago things to me if you were to go on the website you would see a story about Sam Farber right Sam Farber saw that his wife who had arthritis was having a hard time peeling a carrot so he decided he was gonna create a better peeler for her to use so he created oXXO kitchen products oXXO has been heralded as the universal example of universal design I work in an office in New York City I happen to sit across from this guy that I lovingly referred to as the world's most industrial designer his name is Tucker beer Meister and he invented the grip he invented the good grips and this one day I I was thinking about it and I realized I'd never heard much about Sam's wife Betsy and so I asked Tucker I said Tucker can you can you tell me about Betsy and Tucker said to me oh yeah did you know she was a designer I said no I did not know she was a designer he said yeah she was around all the time and I started thinking about it and I realized I don't know a single designer that would just let her husband inspirationally just make a peeler for her so I pick up the phone and I call Betsy and the thing she says to me is is I'm gonna go down in history as being Sam's lowly crippled wife and this was actually my idea in the first place so that's step one step two of design thinking is defining the problem right but because disabled people are not actually invited to this process it oftentimes becomes us that's defined as a problem rather than the problem being defined is the problem right so you have our insights gleaned we are defined as the problem and then designers enter an iterative process of ideation prototyping and testing which leads to what I call the unacknowledged sixth step of design thinking or as I call it design thinking because we are expected to be grateful for that which has been done for us right so like I'm still pissed at IDEO right I'm like you losers and so I've got right this whole kind of premise on on design questioning and I'm thinking about it and I'm like yeah well what if it's not actually design thinking that's the problem what if it's actually empathy right like I think we may be losing the plot here right this is wine that is sold by a venture capitalist for like 60 bucks a pop and you ask him if you have empathy for the user do you have empathy for the seller oh I have empathy for both mm-hmm so anyway what is empathy right so there's a really good book that I recommend it's called you must change your life and it tells the story of real Kay and Rodin and their relationship and one of the things that actually came out of it was is there is a psychologist his name is Theodore lips right he was he lived in this this community at the time he was Freud's mentor and what Theodore lips discovered was is that when a person goes into a museum and they encounter a great work of art right what do they do right well they may they may tug at their collar and they might put their hand on their chest and step back or they might sway the thing that he realized is that people are physically moved by works of great human expression and so he created a term and the term was called I'm full lung and that's quite simply what it meant it meant physically moved by works of great human expression and the term took off in Germany and it eventually made its way to America and when it came to America not only did the word shift from mindful lung to empathy but the definition shifted and it stopped meanings feeling physically moved by works of great human expression and it started meaning feeling sympathy or in the case of disability we experience it as pity for a person's situation or circumstance and so for the me thing that was so striking is is that as empathy was shifting from right inspiration to pity at the same time I feel like disability was shifting from pity to inspiration and I think in this process we've lost the capacity to glean and really parse out one emotion from the other and so when I think about it I realize this leads to three outcomes the first is is that it reifies class and power structures right so you always have the empathizer and then you have what I sort of called the empathize II right but it's the empathizer it's the it's the the brand that gets to depict the interactions and to tell the story of this empathy you never hear from the epithet it prescribes emotions and this is as far as I've kind of come to understand it is is that we have convinced ourselves that things that feel a certain way do a certain thing but they don't right I would even go so far as to say that things that feel a certain way oftentimes prevent us from doing things that do a certain thing and the last thing it does is it silences the recipient and when I reflect on my own experiences over the last few years the thing I realize is is that questioning systems has done a whole lot more for me than empathy ever could have right I mean listen was nothing but a you right and so right but it turned into something and there was no empathy in the process it was just simply wanting to clarify a situation interestingly I was at 99 you just watching we were running fists in there and so I'm sitting there and I see the feet in front of me and in in Tim Brown the the he at the time he was the CEO of IDEO he was participating in a QA and I really struck me as interesting that he'd gotten right this is the guy who they spent the last 30 years of his career popularizing design thinking and he had gotten you know 10 15 minutes into this this Q&A he had never once said Design Thinking and that was until the interviewer actually asked him about it and this is what he said he said so unless we popularized design methods and design approaches and we use the convenient term Design Thinking even though I think it has lots of downsides to it and I was like you heard you think the term has downsides not the methodology but then I got curious and I realized maybe he's right the term thinking does have a lot of downsides right we were told from the moment that we enter our first design course to think of think of think of but all the while we're actually being taught something completely different through mantras like usability we're actually being taught to think for as though we've become these Vitruvian godlike creatures and that simply by entering this profession we become the arbiters of all that is good and just and in all of this if there's one thing I've learned it's this thinking is elitist think about it know don't think question right who gets to be in a think tank who gets to be a thought leader who gets to be a design thinker and are we really doing the thinking or are we just getting the credit this is why I engage in disability as a creative practice the world has taught us that a disabled body is nothing more than a body in need of intervention and this is exactly what designers do we design interventions we dedicate our careers to it we are here today because of our commitment to this process we are seekers who develop our skills with rigor because we oftentimes want to be the best there is a certain glory and being a designer and so I see the natural progression of course we're going to want to take our highly attuned skills and apply them to something that we think needs fixing but I am someone who straddles both sides I am a disabled designer and while solutions feel fulfilling to me as a designer as a disabled person this process feels destructive it's as though we've become a project or a topic instead of a discipline or a craft where is the rigger design schools are beginning to teach accessibility curriculum but in lieu of creativity students are being our learning disability through compliance checklists but that's not design as I've been taught design as art well art with rules and if compliance is the rules where is the art and that's actually where I come in right the art is in the disability culture it's in the history it's in the knowledge and in the theory people don't realize that a person can feel passion and love for disability disability is something a person can endeavor and disability can be a practice a creative practice but design schools aren't fostering relationships with people who engage in disability as a creative practice and so a culture is being created where students don't think that they need to build real relationships with actual disabled people they think they just need to feel empathy for us and this is actually why I've taken such a career in this idea of design education so when I created the with fellowship one of the top design schools reached out to me and they said to me do you want your disability numbers and I said sure of course I want them and before they even sent them to me I knew two things the first thing I knew was is that in the United States and in Canada about 11% of any college population is disabled right but the other I think I knew was is I knew how they got these numbers right these aren't students that identify as disabled these are students that go through a highly stigmatizing process of requesting accommodations right so how does a student do that well the first thing they do is is they go to their doctor and they get a note they then take that note to student services and they go through a completely demeaning process where they have to prove that they require X&Y accommodation and if they are granted that accommodation they then have to hand deliver a note to their teacher and therefore they have stigmatized themselves in this classroom so it also sort of fundamentally believed at 11% numbers a little bit low but I was shocked when I got these numbers it was the numbers they sent me were about three times the national average there were departments like graphic design was one where I was just it was it was just sky high and I started thinking about it and and this is what I realized right I I understood for the first time but of course disabled people even though we don't seem present we are entering design and creative fields at much higher rates right disabled people we are the original life hackers we spend our lives cultivating an intuitive creativity because we are forced to navigate a world that is not built for our bodies right of course we're going to want to benefit from this process right so if that is the reason that disabled people are entering this process then it left me with two questions the first question was is what is happening to these students year after year and the thing that I believe and the thing that I'm hoping to prove it is is that these are the students who aren't getting their needs met and so these are actually the students that are dropping out year after year and then the second question I had is is what happens to these students after they graduate and I fundamentally believe these are the students that are falling through the cracks I mean when is the last time you encountered a disabled creative director I don't have a lot of peers in this work and so the thing I started realizing beyond that was is that it's actually not just the disabled students that aren't getting their needs met there's actually a whole other subset of students that is is completely being deprived of everything that they need and those are students that have taken an interest in disability but have absolutely no resources at their disposal and so what I've been doing is as I've been going into design schools and I've been advocating to incorporate disability studies curriculum into these design schools because what happens is is if you have disability studies curriculum and design schools you create a space for these two groups of students to come and to meet each other's needs so that when they graduate they ultimately enter their professional careers not thinking that you design for a disabled person but you design with a disabled person and all of my work is aimed toward one thing which is that I want to be able to honor the friction of my disability I don't believe we need to be fixing disabled people we need the value of disabled people and I like to think that if design can start investing in disabled people instead of trying to fix us this work can be expansive we are designers as children we may discover that we have a knack for design and yet we don't we know that's not enough right we go to school and we develop our schools and we graduate and we attend events like this one here today this is our commitment to this profession and yet when it comes to disability we oftentimes think we just know but we don't I'm going to leave you with this story so year ago it was a year and half ago this beautiful spring day I was walking through New York City as early in the morning I said it to work and I encountered the most beautiful bouquet of flowers I had ever seen in my entire life and they were just thrown away in a trash can and I couldn't believe it and I was thinking to myself who would just throw these flowers away and so what did I do well the first thing I did was I snapped this picture and the second thing I did is I realized I'm going to save these flowers but the cherry blossoms right like they were six feet tall they were way too big and so I was like no but there were some tulips scattered around the bottom and so I picked up the tulips and I took him in to work I'm sitting there with these beautiful bouquets of tulips and I I pull up in my phone and I'm looking at this this picture and I'm thinking to myself somebody needs to save those cherry blossoms so I go back and I get to the trashcan and I tug two of the cherry blossom stems and in the process I knocked the trashcan over and I'm horrified because it was so beautiful right and and I'm wearing this brand new leather jacket and I didn't care I hugged that New York City trash can and I lifted it back up but I had those two cherry blossom stems and I I was looking back at the trash can and I realized it was not nearly as beautiful as it appeared when I had taken this picture so I get back to the office and I've got my cherry blossoms and I've got my tulips and I've got this picture and I'm looking closely at the picture and I see a hashtag and I was like huh and so I go I go on Instagram and I type in the hashtag and it was only then I realized nobody had actually thrown these flowers away this was a public art installation it's how it's just like like who but like who would do this like I was I was horrified and I started crying and and I did the only thing I knew to do which was I emailed the artist and I told him myself and I said to him I find myself completely overwhelmed both by the beauty and by the misguided nature of my instinct I hope this serves as a reminder to me a disability advocate that not all things need saving sometimes they just need to exist thank you I'm back told you we're gonna have you sit here shoot this is a relevant question how are these chairs good yeah cool thank you of course I have to say thank you for being here I'm really appreciating the thread that I'm getting to draw and we talked about this backstage a little bit but between some of what I think are seen as separate communities so from what I'm getting from for example Jessica's talk I'm seeing in your talk as well where are we looking at the system or are we looking at the person especially when we're dealing with like blame I think so one of the questions I want to ask you is how do you deal with guilt and apology and shame and blame that come at you as like I feel like we spend these almost as currencies when we're confused about how to interact and we don't know what to do other than like feel bad how do you interface folks it's I mean it is incredibly difficult for me I I find myself completely traumatized by this work at times there's a hashtag that I'll point everybody to it's disability to white one of the things I realized in the space is I am very much somebody who passes and many of my disabled peers the people that I admire the people that I learned from they don't and so I'm able to gain access to spaces that they are not I do everything I can to bring them along and oftentimes it is for me a decision of am I doing this work a disservice by even being present you know as somebody who passes and so it's it's something I grapple with daily and I feel an immense amount of guilt that I have managed to write because I disability historically meant unable to contribute but we live and that's a derivative of industrialization but we now live in a time where that's actually not the case at all and so what I now see disability as is prevented from participating and so I in many ways while I am you know able to have a voice and to to have a say I I am surrounded by the people that I admire the most who don't and I don't oftentimes know what to do about that yeah well the because we have moved away from this industrialized world where you are simply a function and then if you can't serve that function then you're out you're on the side somewhere are there communities that you're going into where there are folks who or there are communities that are actively aware of what is required because they're employing people with they're employing disabled folks and then they're putting those things into practice yeah it's I mean it's incredibly it's incredibly complicated I think the first thing that comes to my mind is is that I think that there's a lot of initiatives in tech especially that say okay let's hire autistic people because autistic people are really good at this specific skill set and what you realize is is that all of those companies that do the autistic hiring or not actually run by autistic people and and so there is movements another really good hash tag is actually autistic so there are a lot of movements around disability and employment that that are just now being kind of created by actual disabled people you know I think the other thing that we're up against is is we talk about equal pay but we fail to acknowledge the fact that sub-minimum sub minimum wage exists so for disabled people it is still legal to pay disabled people pennies on the dollar and so and so you know I I don't know what it would mean for me to thrive in this field knowing what legislatively is still possible for my peers it's and so in that way you know I think you can't really look at disability as a monolith you know I think we are we all have vastly different experiences but I think the thing that really brings us together is is the fight for more rights and and and doing you know and building upon the work that has been done before us and acknowledging the work that's been done before us because it's powerful I was having to talk to some folks and didn't see the entirety of your talk did you talk about Google glass no but I have I have a lot of thoughts about that yeah so would you like to elucidate some of them because that came up when we were talking about you coming here and then that was something that was created - like there was a version of that that was created for folks with autism so that they could make eye contact the way you're supposed to so that's deeply problematic right and while is why well again it's this idea of fixing who cares if a person isn't making eye contact with you like that they're happy like they don't want to make I wouldn't want it I wouldn't want to make eye contact with somebody that was forcing me to make eye contact with them and and you know I think a lot of times the question I ask myself is is are we actually trying to improve things for the disabled person or are we just trying to make ourselves more comfortable and that's the solution around trying to make some our selves just a little bit more comfortable there is a theorist her name is Simeon Linton and she says that our discomfort from disability disability stems from that moment that were around somebody that is a little bit different and we don't know what to do and we panic right so you a deaf person with an interpreter do you do you talk to the interpreter do you talk to the deaf person and wheelchair user do you bend down do you stand up what do you do like that's actually what creates this sense of panic and I think I believe that to a certain extent but like that it's not on disabled people like that's on non-disabled people - to navigate that and get a little more comfortable with it but specifically with Google glass so there's this interesting guy his name is Nubian luka he has three forms of macular degeneration and what he did is he hooked up Google glasses I think I can EKG machine so like he's got like a thing on his head and what he can do is is that you can look through his Google glass at something and what it does is it zooms in so he can see it and so he sort of hacked Google glass to make something that he calls think and zoom I'm working a lot with like autonomous vehicle companies and and the conversation that we're having is is that people feel a deep threat around safety right and at the same time like autonomous vehicles create access and so the thing that I'm urging autonomous vehicle companies to do is to actually enter the market through disability and allow disabled people to gain access and alleviate that pain unda mentally believe if Google glass had actually entered the market through disabled people not trying to normalize disabled people but actually through disabled people who benefited from this product as a form of access I think Google glass will be thriving today do companies are you finding that companies are reaching out to you yeah increasingly very much I think they are they're hungry for this you know if the case makes itself disability is it's an emerging eight trillion-dollar market it's larger than the size of China and the thing that companies are so frustrated by is is every time you try and poke the Beast what you do is is you sort of strengthen the shell around it and also grow it even further and make it harder to kind of tap into and so what you have is is you know these these sort of disabled academics who are really kind of figuring out oh this is how you tap the market you don't do so by trying to fix a person but what you do is is you do so through trying to amplify a person and so I think companies are starting to get curious they're also scared so they usually come and then run for dear life but it's fun while they try so are they funny for us I guess are they approaching you because they know that they don't want to be outdated and they see you know they see it's appealing to potentially their pocketbook but are you getting companies maybe at like a Nike level or I don't know what so what did you say automated yeah like I'm not sure which ones you meant specifically but are there folks who are coming to you because like from a place of heart that where they're like oh this is the work that we need to do not this is what's gonna make our company viable for the future but they're like this feels right are you getting that or are you mostly just getting like these numbers make sense so what I get is I get advocates within companies I get somebody who my my work my perspective resonates with them and so what they're doing is is they're advocating internally and so what I feel that I need to do on my end is give them as many tools and resources as they can to kind of go into their company and push this forward right we are up against a barrier every step of the way because this has never been done and so it is a patient process the advocates remain advocates and remain impassioned and and fight for this work and it's just a matter of me being patient and allowing them to do their work but you know and I had sort of mentioned this in my talk this thing that happens when brands announce a campaign so what happens on the inside and I can see this coming a mile away now is this so what you have is if you have those advocates in the company and what they do is they build they're able to build enough capital to get the idea into the realm of possibility and then they get it to the point where there can be an announcement around it right and so they then are able to convince the powers-that-be to announce the thing what happens is is they announce the thing and the powers-that-be then get the high of having the good PR boost but then the powers-that-be lose interest in the thing because they realize like in term because a lot of disability is maintenance and you can't get a PR boost every time you're sort of engaging in this maintenance process and so what happens is is they slowly strip away the powers of the people of the in the company that have advocated for this and so one of the things that I actually do with the advocates is I advocate to them and say don't talk about it right as soon as you talk about it you're gonna lose every bit of traction that you have and that's really sort of the the chess match that we're up against oh is that similar to like the what we have with touchscreen like an iPhone or whatever that this was is this correct that this was originally created because somebody needed a way to access their phone but they were having some sort of did you talk about that but I don't think about that when I'm using it I don't think about that as like something that was put in its place for somebody who had a disability yeah and nor and and I'm not necessarily saying you should though I am somebody who is really focused on rewriting a lot of these histories and I was I was saying this is somebody upstairs one of the things that I really struggle with is this concept of design for all right and so right if you look in and understand the history of disability so disability is a derivative of industrialization right because this was the first time in history when bodies were expected to perform in these very rote and mechanized ways and so suddenly there was a subset of bodies that couldn't contribute right that's what created our understanding of disability it's called the medical model of disability and so what happened is is when like the 60s and 70s rolled around and for the first time people decide that they want to address it right the thing that they do is they created something called universal design and the thing they didn't realize was is that Universal Design was actually recreating disability because right the thing that created disability in the first place was these expectations of all and normal and universal and so in and so there's this thing where when I whenever I see design for all I'm just like losers like you you know but there's another part to you know which I think is really important to acknowledge and there's a scholar named Amy hammer a thats been doing a lot of this work but you know when you say you design for a single person and everybody benefits what you actually serve to do is if you ultimately erase the disabled person in favor of everybody else you know and so it's it's really destructive Amy has sort of expanded the work to kind of express how all has become a white supremacist talking point right you know all lives matter right designed for all like these are actually ways that create a racer in the communities that they sort of seek to serve and so all is to become this sort of form of the words becoming increasingly problematic I love the cross section I actually to that point and around some of the language that we're using I was asking you about you were explaining intersection yeah I'm just jumping around for a second what is problematic because like words like diversity and inclusion and intersection these are words that we've been using to champion a sort of ethos for a few years now but we're examining faster and faster and faster I feel like what is actually effective as it speaks to a system and as like a way to just get out of being a guilty party or whatever could we explore that just for a second or yeah I think well I think for me this is more personal thing so like when you talk about inclusion or diversity or intersectionality well what's the thing or just getting left out well disability that's the thing that gets left out every time and so I made a concerted effort to not say diversity inclusion and or sexuality any of those terms in my work just simply because I'm only saying disability because somebody needs to say it there's a really another hashtag stay the word there was a study that was done it's called special needs as an ineffective euphemism and what they found was is that when we try and talk around the word disability we increase the stigma of it and so I'm very much trying to get people to say the word disability what was your question there was I had an answer well then there's just another piece of that and just with the I was I've heard the term intersectionality a lot and then you were talking about how that's just not a term that you used yeah and I was wondering if it's like to perpend it's like too sharp I well I think for me what happens is so and we'll the other thing we were talking about some backstage is tickling so I'm oh I'm so glad you brought that up excellent okay good you get a point for that for sure okay tickling yeah so how do you how do you tickle a person well to tickle a person you effectively need to create equal parts pain and pleasure and so in my talks the thing that I try and figure out is how is it that I can create the most amount of pain for the audience right and the only way I can effectively do that is if I create an equal amount of pleasure right I am trying to get people a little bit uncomfortable like it's that's the way that I can be effective and so I feel like when I use terms like like intersectionality I think is like the biggest one for me to me it feels like it just it shuts people down I think if you're an advocate for intersectionality you're like yes like you know this is amazing but again I think most people that really use the term don't necessarily have a defining it at the same time if you're on the other side of it and you're like you know intersectionally I don't really get it or it's just it's a stupid you know thing like then you shut down and it's so it doesn't actually mean a thing another thing I was saying was is I actually really struggle when people call something brilliant right because like what happens when you're calling something brilliant well I fundamentally believe that what you're doing is you're absolving yourself of doing the work of actually figuring out what it is that you're trying to say and so in that way I try and at the old I stick with the word disability but everything else that I do I really try and describe it because otherwise what happens is I feel like people kind of bring in their implicit biases but I think but I also think the work of actually digging into what I'm trying to say is where it's the richest you know the points are to be made I guess I'm just excited for especially this tickling concept and what you're talking about as it applies to this community here because we often times lead lean into what is very pleasurable for us without looking at where the spectrum of feeling you know yeah I'm hoping as we're gonna wrap up this QA I'm hoping that you will continue to lean in to talk with each other and take the time to ask some of those questions we are going to take a break for lunch but before I announce that even though I just did would you one more time applaud Liz Jackson [Music] you