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Disability Icons Project

May 8, 2014|

A discussion with Sara Hendren, an artist, designer, and writer and her work on the Disability Icons Project, changing perspectives on the disability community.

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Automatically Generated Transcript (may not be 100% accurate)

You're listening to microscope a series of interviews of people of interest to northwest -- and -- Washington. And Gary blossomed and today on microscope will be talking about changes taking place in the disability community. For the discussions we turn to special correspondent Rick -- today we welcome. And artists. Design researcher and writer at Cambridge Massachusetts. Sarah -- Thank -- every day care it's great to have you here I know how did you first get involved with the disabled community. Well I have and then a long time interest and art and science and those kind of sort of topics that I worked -- -- and it's really watching their experiences that in my family of people disability kind of navigate. There world. I have in my family had a son with Down syndrome -- states. I had. Artistic. Neeson and just -- -- eight technicalities and my family. So Lou I have watched this pretty close and personal and you know my a sort of personal experiences very embodied this kind of disability politics and inclusion and so on. So. I kind of started that's reluctant to place my interest in this field and. Come from Perry just kind of blossomed into because my background is in arts and design kind of blossomed into this exploration and tools and technologies and successful architecture and opportunities -- designed to think about disability and a new way. Now how do you feel that I guess architecture design and technology and the arts. Can kinda combine to help people get a greater understanding of disability. Yeah -- will do there's plenty of course there's -- really interesting engineering to be watching in those -- that is. It that the technology and prosthetics and we're seeing. All the time big leaps and bounds in terms of the technical functionality as things like. Artificial limbs or. Hearing aids. And those are all kind of development but I track and I think her I really interesting to look at. I don't think think though that there's that's like another. Blair worked at his tend not to be as well known him and gore is as visible but the engineering work and added the work of artists and designers. To do what -- you can call inter rocketed design or are critical design. That is to say. They're designed. Artifacts and tools and conditions. -- actually raised questions rather than solve problems and those questions are about. Perception and cultural experiences and how we are recognized. Independent independents and when our cultural norms around. Whose experiences matter and public stage and -- we think that having special needs that he would think tennis scene. This kind of -- says. Independent then and without any need for assistance and I think. Once you start to investigate those kind of questions. Through your devices and threw objects and through -- scenarios and through architectural space. Actually -- really interesting place to start having a wider cultural and political conversation. About who has access and who doesn't and where are kind of preconceived notions about each other and how might we really productively become. More uncertain about what we know about the experiences of other people -- that that's something I'm really interested in this is. Kind of dialing back from the very medical highest certainty of what is the people are it can do right course for not solely identified with fair conditions sure. -- -- But how do you get people to do that you people know first hand already but that's important. Or you need to invite them to that experience and I what I find is that the arts and design around the particularly. Interesting ways to kind of draw people and with a posture of invitations to ask is typical questions. But with kind of a wonder and -- kind of excitement and -- activity about about these topics rather than saying. You don't it is important climate played as -- support you know sort of whack my finger you're examiners say. Take a look at all that's really interesting stuff that's being made and what to -- what does that rate for us and how can we talk about this to be good how can we. Addressed these really vital questions but in a way that everybody can access. Absolutely and I'm church around being somebody who has a number of disabled people in your family. You must at CNET up close and personal several times so where a non disabled person might held. You know not knowing the accommodations needed for one of your relatives. Yeah right absolutely and also just I think I'm just to where all the time as how. People and my family. Are performing in public you know how people are perceiving. What it is that they can do or can't you are the questions that I get asked about that how this question about whether there high functioning or low functioning means that I kind of question as. Really Leighton went all kinds of assumptions about. People with atypical bodies and experiences and I wanna go well. How high functioning are you on any given day you know we you know it was for me the experience that atypical ability is about. Thank you don't infinitely complex experience of the world just like it is for anyone who identify as. There -- typical you know whatever that is that all of us. You know perhaps peaks and valleys of what is that we're really good that competent and things -- -- -- really difficult and challenging. And though. That's the kind of uncertainty about talking about where am I am I have yet witnessed over and over people's. Being certain that because my son has Down syndrome for instance that he must be like everyone they've ever imagine that counts -- -- in these very -- at a particular ways when it's one. One piece of who he is you know then and that his life as -- Cingular and at three dimensional. As anyone else's life and then indeed the thing that he wants SARS so much like what all of us want to break that -- abiding friendships and strong community and. Satisfying. Tasks in the day. Eventually. You know his own self determination around education and career in meaningful kind of inclusion. In a world that's that's what he wants and so. I feel like this is the way to kind of again. Raised the Specter of those difficult questions. But in a way that that makes. I alliances across -- usual discipline I think a lot of people to the table -- -- I'm really dissidents. And engineering work and architectural work but -- also really interest to them. The symbolic and expressive work that happened in this -- are getting all those peoples talks to each other's really passionate about. Now I understand you're involved with beyond accessible icons project. Yes that's right. I'm co founders made my -- Different brain I mean I was teaching went. Certainly -- go to court in college and I. Started that project it was initially. A very grassroots kind of on the grounds. Street art kind of campaign will be just intervenes. You know with sticker graffiti. On top. Wheelchair accessible parking signs. And our city and we. We what we did was we. As a clear back sticker that -- A new or redesigned kind of dynamic it and organic and and we think. And I Condit represents. To come as. Agency an activity as people with disabilities in the world. And we let overlay that -- to to old icon and feel like I'm that we found to be. Static and in mobile and and indeed have a tendency to. Dynamism. To it's it's it's because you know it started when I was looking around -- various. Representations of the icon. You can see all different kinds they weren't the first people to redesign it yeah I wanted to draw attention as to why -- why you went redesign it and what that would. What those kinds of symbols mean in our everyday kind of forgot killer has walking around in cities and towns. And how we represented each other in the public -- because everything else looking at it. If you go to any national park are or are for public places you'd see icons for what can be done in those places that is like. Planning or rafting or -- thinking all the facts on the unity side images show bodies -- -- -- are really dynamic engaged way. And by contrast that kind of the -- also. International symbol of access is a much more passive ones. Doesn't matter if somebody does such a chair or future arms it doesn't matter those things -- -- that the way it's -- Literal kind of wheelchair racing kind of ideas -- much -- symbolic metaphorical about. See people who are using chairs for instance instead of the way people always talk about people who use wheelchairs as quote wheelchair bound that's very revealing language and it. Nobody's being bound by the chair of the body is using the chair right periods no more no less. And we need to say it's person's first rated site that person is having an experience. That also involves the wheelchair but instead of this idea that the wheelchairs and how. It's really the important part of that body you know it is just one part it's not no more no -- straight through and I think symbolically than what that starts to rain dresses. Right and having a kind of able bodied typical experience in public statement is having an alternate you know atypical experience. Both of those experiences. You know things that they weren't different bodies. And things that they limits and you know let's let's decide that access for all really is actually kind of. As good -- you know aspiration that we wanna create more us. And -- see people you know with disabilities as defining what it is that they want you know and -- able to tell us in various ways when it is that they want. Exactly it sort of restrictive when you also when you hear terms and six in society such as. There are disabled person as opposed to third person with a disability like they have. Friends they have failed leaders there's more to somebody with a disability. Than just them being in a wheelchair or just them. Suffering from a particular ailment. Right that's right and it gets very tricky of course you have to be very specific about these things and I know that. You know people. Could identify on the autism spectrum many of them prefer to be called autistic brain and not not a person with a disability with autism so. -- -- have to be very careful about speaking for others but in principle of course you're right -- is that but the point is that people get to say. Who it is and what they are right and how they are engaged in the world and that first and most of these situations. You know not mapping a biomedical kind of quote -- says. If it's not Sadr City is that right I mean. Not letting that be this kind of defining factor -- Absolutely now I'm curious what has the response of people being too. The on the accessible icons project. Well it's spend. I could. It's been overwhelmingly. Positive and overwhelming just in general like we had no idea how this thing would mushrooming growth. So when Brian and I started doing there was doing this sticker campaign that was probably in 2000. Nine and ten and we got a little at a press coverage from out of people's prejudices that you know we -- Because of stickers gonna put up an -- in our town you know whatever. And then people are directors since day. Well we wanted to is fine Mike is our time needs to be replaced anyway why can't we use the -- I kind of give asylum and that we could just make it to this new ones it's beyond the kind of sticker graffiti. Art installation and more into the realm -- like a design kind of movement. And we were like gosh I guess you know it just what people want and we need to have all the project to let it must have been the case. And I mean time. A man named just gentry from a nonprofit. Here in Malden Massachusetts that is an adult day services center for adults with disabilities. And he contacted us and said you know we have a comment. We have a volunteer day where one of the big law firm's downtown it's gonna come and confused him work for us. We think to be really interesting is if we have those attorneys. Helped us which are understand full of our IS today. -- in our parking lot of opportunities symbol of an -- she under went a whole event around I mean yes so. We did that I like it presentation and an. We all work together with. The clients of the services center in these players that day. And retain besides it became a kind of. Conscious act talking about perception and talking about the old ways that that we represent each other. The evolved ways that we represent each other and about our language all this stuff well. From there that it became clear that like all these companies private companies and inserted it into townships. Nonprofits churches schools like confidences that we -- which are our -- server. Either like symbolically to represent you know are kind of constituency in such a way. Or because we need to do it practically and we want to we want any better about doesn't signal the world that -- you know we are we have an inclusive spirit. -- so we formed the -- like -- project between. The design team and for our enemy and then triangle where. I think I can project is now housed and it's it's free her open used for. For anybody who wanted to and use that and we provide various files and download. And we also provide -- suggestions and information for them communities that they wanted to use the icon to start a conversation about something else and their accounts in other words. The icon -- this is adamant about arts and design being a great indication. -- -- I can't compete just the beginning if you wanna say like -- you know. Wheelchair access is good in my town but inclusive policies of the schools really need. Looking hat so I can we start with the -- talk about perceptions -- the person to talk about access with the broadest possible definition. And that who can be lobby in our town to get the necessary to get some action going in the other direction that really isn't about. A new graphics full stop it really is about saying. Here it doesn't like that then you -- avenue. For us to talk about a lot of ideas about disability in the world. Now I'm curious have you received. Any emails from people saying hey. This helped us get this discussion started in this particular city and it led to this. Well again I mean we're still waiting on some of those the long term those kinds -- -- you know like it's. These kind of subtleties -- -- are really difficult. And sit and measure into the cage. We certainly have distributed a whole lot of icons we've I had lots of people from people saying. It -- is you know from people in India for instance you've been working in a rehabilitation clinical settings is that. Hey I wrote my way you know and the minister facilities for my province and I've got to find change in my hospital and I used as an occasion to say you know we need. At ten point kind of affirmation of the rights of people at facilities and like here's the photo I think. Without even saying just like what's the history here what you guys doing just registered said. I know exactly were -- doing what it is what I'm doing in my particular context which is really different from yours and here's what I did you know to try to. To try to address. But I mean is he in my hand communities about like. Those kinds of stories are just enormous and then people already just from campuses today. You know we're gonna have an event it's about access to leisure icon or just. We're gonna have an event and we wanna -- -- to signal that everybody is welcome it's just you have to do with disabilities so. I mean many many countless in the at this point emails from people all over the world saying. -- now that we know kind of better we wanted to do better with just things. I think you know it is -- time really able to tell right because. You know as somebody who identified as an activist for sure it -- you know I circulated. It doesn't matter what what concrete changes result from that you know I mean it's there. We don't want it to be the equivalent of you know company. I think an image as the treaty on its. You know chemical agents practicing now they're environmentally friendly because of the image on the on the front you know we want. I wanna see you don't real partnerships in the real extended. Notions of right so. I'm really upset and I'm willing to hang around and wait for that like permanent for the long haul here and I think. I do think that images matter I think history shows the images matter and. If refer for bill and for good so we're hoping that this is again you know the start of something much brighter. That's awesome and it sounds like your re your partner Brian is in -- further along what rents -- Yeah I think so and I mean this -- like for the first time experience for him and kind of disability politics but he is really interest it and integrity artist and really interest at some kind of public art activism to assist -- it's been a great partnership. That's that's really interesting that you brought him into inserted the disabled world so you are bringing people in one person at a time and then. You two collaborate and gets other people involved with the conversation. Not test it. You know non disabled people they may be disabled people who didn't believe that they can rise up. Yeah absolutely and you know that -- -- -- well couple things one is -- the is one of the biggest. About -- Successful I can't project. Is people who have disabilities via finding Mexico megaphone for their own -- and that's then. For us you know really one of the big and this. From the beginning hectic as a partner of ours named Brad Childress is the young man without North Carolina we met him appear in Boston at various events. He moved with his family's North Carolina he's become -- kind of regional director of the project to honor. His cerebral palsy and uses. Machines to talk. And it's been really. Fantastic to hear his voice kind of literally and also. Metaphorically on the radio in newsprint for him to say. Here's what I want you know and here I am somebody whose experiences being underestimated all the time that sentiment lies and and you know kind of diminished and what I want this. Schooling a job to thank you and and that he she is the icon to be the occasion that just been really great to get a -- to say that yes I mean. You know my. My all my work is really motivated I trying to find what where can I find unusual alliances. For but people who maybe just the. By a lack of personal experience they just haven't seen how important these issues are and I universally relevant thing. Are you know over the life cycle of how we think about dependence and independence and how we think about. Our cities and our schools and medical technology. And just try to build those -- those alliances by again by this posture indication of like look at this really interesting generated. Resource base and all this opportunity and it has this politics and ethics underneath that it's so critical. So let's think about this together you know that's been. What does that gets me up in the morning that this kind of relationship. Nice come now switching gears just a little bit I know they Europe parent of a child with Down syndrome. What has been the struggles come as far as education as you find that teachers are receptive or I'm receptive to the needs of your of your child. I'm -- Cambridge Massachusetts and -- All My Children go to Cambridge public schools here and we've been lucky that we live on the part of the countries that tens overall to be pretty progressive with respect to it inclusive. School policies and we've had the privilege of working with. A whole lot of very skilled conclusion specialists. And it's not been without some bumps in the road for sure and I think Down's syndrome. You know is one of these. Conditions where for one thing the weren't syndrome and the fact that it's genetic mutation. People come around only -- on. -- to each person who has Down syndrome the same global kind of and you know all encompassing delays and. So it's been a struggle sometimes to say let's be really specific about what our son when my son is doing well what he's having trouble -- and -- -- Expect from you know the beginning that he has Down syndrome and therefore he has trouble let's see what you know where he really has trouble and I happen to think. You know -- school systems are strapped everywhere. The law you know right now he's he's he's absolutely. Stands -- unequivocally for inclusion but it takes. At a certain kind of occupied certain kind of privilege and and franchises and learning to know. What are your rights to inclusion and how do you really -- as a meaningful way and it was actually. A lot of parts of the country and then just by insurgents. For the privilege or lack there structural privileged. There's there's a big. A big gap between what the kinds of services and inclusion kids are getting in the kinds of others are getting so. You know we -- we've had since we've had to really blog it out you know I'm very real way with our school district to make sure that person is getting when he needs. And we know that apparently doing it to the -- it just keeps our. It keeps our eyes you know it's very wide open my husband's -- -- To what the situation -- -- -- -- -- -- people who share our situation there was. It's one I welcome because it keeps my work really grounded. I bet I bet and it's I'm sure. Also you're sending him in that situation. You know the teachers. No to treat him as an individual so maybe it'll be easier for -- for the next child who comes along who has -- Down syndrome or another disability. I -- not that I mean I it's important that you know everybody who. Right every parent who lobbies for he. You know another adult in the classroom to provide support you know for one thing -- all the other candidates typically developing kids. Benefits from that kind of help put -- right and the precedent model is set for something that worked really well for a child and so the district have to take notice that and and indeed the allergic to any -- parents share information with one another event it's bolstered by as you know each individual case and when it was the hardest I remember thinking okay it's not just about for it's about doing it for other people you know and trying to set. A new model in place we have got a new. Special education director in our district to everybody's really excited about so. You know I I continue to be and we has. We have -- and inclusion specialists dedicated to the afterschool programs here in Cambridge and we have. Guaranteed inclusion in -- city. -- sports is so. We're really lucky in a lot of ways that so to live here and to be in a place where he. You know again that there's a kind of political history around inclusion but it just didn't need to be refined and. And just -- continually defied all the time. Absolutely home -- had to switch gears a little bit I understand you have. Art that is on permanent display in the and the museum of modern art in New York right could you describe -- a little bit for our listeners. Yes sure it's so -- at the festival I can't project. You know again once we started hearing people. From people that they wanted a new icon and all the as a kind of prophecies in the kind of some defensive things that it's our results from the icon. We started getting a lot of press. That it partly due. Gordon College where Brian Carney is still teaching I teach it on the different island school of design right now but -- -- Bristol court college in court and really got on board with this project at a campus. And partly through that in part into the design Presley got. Quite a lot. Media attention. And then that came to the attention of the museum of modern art and has to design security their talent to millions though. Today app purchases that we don't wanna collect. The project as a set of ideas not just doesn't symbol because again we weren't the first people. -- -- assemble a new way we were the first people to say. We're re trying to assemble -- and we're kind of shining a spotlight on the fact that we're doing that so we're shining a spotlight on the actions that it takes to migrate old symbol to the new one. And more than that this project is really an ecology. Change in the world it's it's it happens via design but it it's it's a much broader you know kind of social efforts. And so they collected it and it was just on display. Gonna show called a collection of ideas and we're really pleased that they understood. To come and operational steps of the working and it wasn't just about like that's a that's a better. You know graphic design projects that the as this kind of underpinning of that has a better ideas. -- so what's the most exciting to me is that it will live in their digital -- units of the recovery -- true. You know that really deep mine -- things in the history is kind of design work at this. That this typically will will come up you know that's just thrilling I can even tell you it's like beyond our wildest. Since it's kinda crazy because you know 100 years from now somebody ninety -- had a digital file and see your work can be really really inspired and. Have millions did that that I DA is it is again thrilling that that possibility -- yet no one is more surprised than me at the Saban. And and the lesson there for me was. You know to rest of the little seed of an idea but also you know just see it through it and keep talking to people about oh. To make it better and and and you know it's just our willingness to keep. -- -- to follow eternal little modest effort actually became so much bigger than. This really -- So switching gears again you do it lot of writing and I understand the you have your own website. That's right it's stabler fight -- war and it's the western called Kapler. I've been running for. -- Fred -- now. It now also. Runs as a channel on just tech web site Gizmodo. Dot com. Yes so. Which is really interesting to me so. For countries since then and Gabler. Started. As kind of wait for me says situated my own practice as an artist and designer in the company as those. People doing work that I really admired and especially in this realm of the system tech prosthetic. The -- started collecting both these feats of engineering that has talking about the fourth super high tech kind of. You know. Very high and robotics in bionic -- -- -- And I also collected. Very. You know on the ground slow attack grassroots -- -- prosthetic technology you'll see in schools of clinical settings everywhere textiles and things. And I also I wanted to sit round -- the kind of points you know and points to end. And place in adjacent -- this work of artists and designers that are telling you about the fourth coming into prerogative in question asking work. And so it's -- -- you know several years of kind of looking at those. -- those those projects and reading -- -- -- done about them what what works but what's going on here in. And then also some kind of disability. Right issues then. So. It's been away for me to build a really wide community online of people who were released like minded about just stuck in ways that I could not have anticipated I mean I started because I just. I didn't want my own kind of gallery web site as an artist that was just -- kind of static page -- -- something that'll. You know it's about other people and that is attendance record of what just -- I'm tracking is thinking about it is inspiring me. The says that from there just built into this you know kind of connection with people who. Our inside the ability to me that lots of whom are outside the disability community of people who are thinking about. Kind of body in the future and cyborg humanism and you know all the ways that we're kind of mixing bodies in -- -- really interesting ways. And what of the ethics there are one of the problems there -- opportunities there. It's an abstinence for me you know waves. Do more than just my material practices in a way to currencies in the networking space. Finding folks are doing really interesting work until I hurt because none of all of public you know I know you're moving in Texas Tech and design direction and without that's what kind of cover assisted technologies and prosthetics. With the kind of pointed view in this way in this city analysts do -- -- That's just a few months. And I've been. Over Gizmodo also and again for me is really central to my practice where. I want earth these kinds of conversations to be happening scored happening squarely in. That's kind of mainstream texting where you'll see them graduated interest seeing you know. -- had the high end elective process -- won't see these other Sadler kinds of questions being asked and so for me to get to list. And that's basically -- kind of gadget geeks space that was really very. Intentional on my part you know. Right why I wish he had more time this has been a very fascinating conversation for me and I'm I'm hoping for many of our listeners com. And I would like to date you again for joining us so let's answer -- Thanks for having. Stay tuned coming up next on microscope will be speaking with -- disability social advocate and comedian Mason's IE.