Organizer’s Forum: Topic – Language & Disability
TUESDAY, May 20th
TUESDAY, May 20th, 1-2 pm Eastern time, 12-1 Central time, 11-12 Mountain time, 10-11 am Pacific time
Join us for a stimulating discussion on language and disability. People-first language or not? What is considered respectful? How do we and our kids get talked about? What about the words care and caregiver? Or should we focus less on language overall? We’d love to hear your perspective along with that of our presenters.
Speakers
Rebecca Cokley, Executive Director, National Council on Disability
Emily Ladau, blogger of “Words I Wheel By,” author of article in Criptiques entitled: “What Should You Call Me? I Get to Decide – Why I’ll Never Identify with Person-First Language”
Speaker to discuss Vermont’s new respectful language legislation
- Call in number: 1-213-342-3000
- Code: 193134#
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CART: The call will have real-time captioning (CART)! The website where you will be able to view the captioning is https://2020captioning.1capapp.com. Username: forum. Password: forum. Thank you to the National Disability Leadership Alliance for sponsoring the captioning of this call.
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Background
The Organizing Workgroup of the National Disability Leadership Alliance hosts these calls the third Tuesday of every month as a resource for disability organizers, in an effort toward building the organizing capacity of the disability community across the country. They generally follow the format of a Welcome followed by 2-3 experts in a given area speaking for a few minutes on their experiences, advice and challenges. The calls include a 20-30 minute question and answer period.
To ask questions via CART: Sign-in to the Chat function on the right side of the transcript and type your question. One of the call facilitators will read out any questions posted there.
Because we want to maximize the generously donated CART services, we will begin the call promptly at 1pm and end the call promptly at 2pm (eastern time). A few other reminders about call etiquette:
- Say your name before each time you speak
- Speak one at a time
- Speak slowly and as clearly as possible
So you can mark your calendars now, Organizer’s Forums are held on the 3rd Tuesday of every month. If you have suggestions for call topics or presenters for upcoming topics, please email them to jlehman7@gmail.com or dcoleman@cdrnys.org.
Looking forward to talking with you all!
Jessica Lehman and Diane Coleman
Co-Chairs, National Organizing Workgroup
Date: 05/20/2014
Event: Organizer’s Forum
This text is being provided in a rough draft format. Communication Access Realtime Translation is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
(on stand by for meeting to begin)
>> Please announce yourself.
>> Hi, this is Rebecca Cokley.
>> Maria Pinkleton.
>> Hi, everybody.
>> Hello, this is Nicole LeBlanc, member of Safe Autism Now advisory committee.
>> Janice Masters.
>> Stephanie Syers from Lansing, Michigan.
>> Jessica: Hi everybody, this is Jessica Lehman. We’ll just give everybody another minute or two to get on. I heard Rebecca. Do we have our other speakers here.
>> This is Diane, hi.
>> Jessica: Hi, Diane.
>> Emily: Hi, this is Emily Ladau.
>> Jessica: Oh, great. I’m glad you’re here, Emily.
>> Diane: All our speakers are on, I believe.
>> Jessica: Are you on the CART, Diane?
>> Diane: Yes.
>> Jessica: Great. Well, we already have 18 people it says and I’m not hearing a lot of beeping so maybe we can go ahead and get started. Nice, we’re starting on time. We’ll have a full hour. So welcome everybody. My name is Jessica Lehman. I’m the co chair of the Organizer’s Forum which is part of the National Disability Leadership Alliance, along with Diane Coleman. We’ll have to introduce our self in one moment. And I am the director of senior and disability action in San Francisco, California. Diane, you want to go ahead?
>> Diane: Yeah, I’m Diane Coleman. I’m with Not Dead Yet, the national disability group that deals with assisted suicide opposition and related issues and I’m part of the steering committee of the National Disability Leadership Alliance which is a coalition of organizations run by people with disabilities ourselves.
>> Jessica: Thanks. So for folks that are new to the Organizer’s Forum, the idea is to really encourage and support community organizing and the disability movement and we do a call every month. It’s loss the third Tuesday at this time so mark your calendars. And we alternate between calls like this that are kind of how do we think about this work, how are we doing our organizing, how do we what are some of the strategies we use, what are some of the challenges that come up, or how do we work with various communities within the disability community or outside of it. So we do those calls every other month and then the alternating month we’ve started doing issue based calls. So last month we did one on accessible taxis and United Spinal led that call. And next month Diane Coleman is putting a call together about bioethics and disability rights. We’re always looking for new
>> Checking in from [inaudible]
>> Jessica: Okay, thanks. So we’re always looking for ideas for new topics. If you have one, please let Diane or me know about that. And this call is captioned. Thank you for NDLA for funding CART, and thank you our captioner for doing it. You can log on and type questions there if you would like and Diane will read those on the call. We also have during the open dialogue you can also just say your question if you would like to. I do want to remind everyone to speak slowly and clearly and say your name before you speak. Please do not put us on hold. We’ve had problems with hold music kind of taking over the call so if you need to get off the phone for even a moment or if you need to step away for a moment, feel free to hang up. You can always call back in when you’re free. We do want to ask people to mute your phone when you’re not speaking. You can hit star six and then you can hit star six again to un mute. So we know a once a month call is not enough to really get into these big topics and we are working on encouraging some on going discussion. We have a ListServe. It’s organizersforum@yahoogroups.com. You can go in there and type in Organizer’s Forum, all one word, and click join. So we encourage you to do that as well as Facebook, search for Organizer’s Forum, just like it looks, and go ahead and click join so you’ll see when we put new things up there. We’re also on the National Council on Disability website which I always forget, is it disabilityleadership.org?
>> Diane: Yes. Disabilityleadership.org or actually.net, either way.
>> Jessica: Great. Perfect. You can go on there on Organizer’s Forum and you can actually find transcripts and recordings of past calls as well as information about the speakers if you would like to get in touch with them. And of course to find out about the calls that are coming up you can find that on the website.
Let’s see. What am I missing? I think I’ve got the basics and we can move on to today’s topic. Actually since we just have about 20 people we could probably do introductions so let’s go ahead and do that first. I always start with the West Coast because sadly there are not as many people from my side of the country. So go ahead and tell us your name and organization if you’re from the West Coast.
>> [NAME] [inaudible] out of Berkeley.
>> This is Olivia Levins from the Idaho Center on Human Development at Moscow, Idaho, joined with me by another student and colleague.
>> Jessica: Great. How about Colorado, Utah, anywhere in the southwest?
>> Hi, this is Tim Wheat at the Center for People with Disabilities in Boulder, Colorado.
>> Jessica: Great.
>> This is Christine at the Texas [inaudible] in Texas.
>> This is Dale Martin from [inaudible] in Texas.
>> Jessica: Welcome. How about the Midwest? Illinois, Michigan.
>> [inaudible] Missouri.
>> Jessica: And we can open it up to the south if we have anyone from the south.
>> Hi, this is (indiscernible).
>> Maria Pinkleton from the Center for Leadership and Disability in Atlanta, Georgia.
>> This is Darlene [NAME] from the Center for Independent Living in Corpus Christi, Texas.
>> Colleen Lambert, Partnerships for Success, Buford, Georgia.
>> Julie Shears, Weismann Center, Madison, Wisconsin.
>> Melissa Rutman from (indiscernible) Tipton, Georgia.
>> Jessica: We can go ahead and open it up to the rest of the East Coast now.
>> Ann masters, (indiscernible).
>> Center for Independent Living.
>> Jessica: Sorry, first I heard Sam I think.
>> No, Ann Masters, pastoral ministry with persons with disabilities for the Roman Catholic Archdiocese of Newark.
>> Jessica: Welcome.
>> Center for Independent Living.
>> Jessica: Hi.
>> with the Center for Independent Living in Newport, Vermont.
>> Jessica: Oh, great.
>> Nicole [NAME] (indiscernible) Vermont.
>> Jessica: I’m glad you’re here.
>> Max Barrows outreach coordinator, Outreach Self Advocates from Vermont.
>> This is Karen Topper and I work as a statewide coordinator for Green Mountain Self Advocates in Vermont.
>> Hello, this is Jessica [NAME] from VCIL. Hello?
>> Jessica: Uh huh, welcome. Anybody else on the call who hasn’t introduced yourself yet?
>> I’m Rachel Floors with the California Employment Consortium for Youth and Young Adults with Intellectual and Developmental Disabilities.
>> Jessica: All right. I guess we covered it. What a wonderful group with different organizations and areas from all over the country so thank you all for joining us. I want to go ahead and introduce our topic which is language and disability. There’s a lot we could talk about today and we’re going to try to tackle a bunch of different subjects. One issue that has come up is learning about people first language and what is respectful language. We have some folks from Vermont who are going to tell us about some legislation that was passed on respectful language. We’re also going to hear about people choosing not to use people first language and learning why.
There was also a question raised as how do we as people with disabilities how do our kids get talked about and what about the words care and caregiver. There’s someone that couldn’t be on this call who thinks we shouldn’t focus so much on language. Maybe some of you on the call want to share some perspectives on that. That’s a little framework to get our conversation going. We have three excellent speakers. We’re lucky to have them on the call. We have Rebecca Cokley who is the executive director of the National Council on Disability. We have Emily Ladau. Emily, did I say that right?
>> Emily: Yes, you did.
>> Jessica: Okay, great. Emily is a blogger. She has a blog called “Words I Wheel By.” I’m hearing some echo. Okay, maybe we’re already now. Thanks. She wrote an article in I guess it’s a blog called Criptiques entitled What Should You Call Me? I Get to Decide Why I’ll Never Identify with Person First Language and I just realized I’m not looking at the updated thing with the information about our speakers but we have Max Barrows and Nicole LeBlanc who are with Green Mountain Self Advocates in Vermont to talk a little bit about respectful language and the legislation that they worked on in Vermont and I have to apologize, I also realized I don’t have the speaker order. I’m going to ask my speakers to remember who is going first. Actually before you all jump in I’m going to go ahead and change the mode of the call so that everyone is muted and our speakers will need to hit star six to un mute yourselves. So hold on a second and I’ll mute everybody first and then I’ll have you un mute yourself. I wanted to ask whoever is speaking first to go ahead and hit star six and make sure that we can hear you.
>> Rebecca: Hey Jessica, it’s Rebecca.
>> Emily: This is Emily.
>> Rebecca: I think you drafted me to go first but I’m also open to any of my colleagues jumping in too.
>> Jessica: Anyone else have a preference?
>> Rebecca: This is Rebecca. I’m having one of those moments where you ask for volunteers and everyone else takes a step back. I can go ahead and go. Okay?
>> Sounds good.
>> Jessica: Go ahead.
>> Rebecca: Hi, my name is Rebecca Cokley. I am the executive director at the National Council on Disability. I’ve done disability advocacy work for probably over half of my life so for almost 20 years now or so. I come at this issue of language from a couple different angles. I’m a person with a visible disability. I’m a second generation little person. Both of my parents had achondroplasia as do I. I have two children, 12 and a half going on 14 and another who is seven months, both of who have achondroplasia as well. My husband is too. I also have obsessive compulsive disorder so on a daily basis I navigate both dwarfism and OCD.
When it comes to language and discussions of language, something that I’ve debated internally in my brain and in conversations over the years, language is sort of a key part of what defines culture and I think as disabilities evolve in the U.S., we’ve seen the language evolve too. One of the key things that’s important as we have this conversation is to realize and discuss perhaps about how for so much of the history going back to the, you know, to the days of vaudeville and the freak shows even, even up to today the community is (indiscernible) to how the disabled world choose to define us. Whether it be promoters, physicians, whether it be nondisabled parents and family members, peers in the civil rights movements. One of the challenges we have as individuals in the disability community is the struggle to be able to determine for ourselves by ourselves how we want to be referred to. You know, I think a lot of us come to it because whether or not we’re born into our disability or come into disability later in life often the first language we get to talk about disability is given to us by the medical community, physicians we see, by specialists or if you’re if you get diagnosed with your disability when you’re younger, the physicians giving that language to your parents or caregivers and them receiving you with that language, you know, and I think in recent years, perhaps in an attempt to sort of object to the medical model perhaps, in its own strange way, I think we’re starting to see families and family focused organizations tied to disability move sort of completely in the opposite direction. Whereas before, you know, we saw much more focus on specific medical diagnosis and typing. Now you’re moving to sort of an attempt to quote unquote specialize disability. And I don’t mean specialize in terms of drilling down into something. I mean specialize as to throw glitter on it, bright bows and make it special. I think this is something that we’re still having a lot of debates within specific disability communities and broadly across the community as how we talk about this and how we feel about it. And I think a lot of the conversation, people with disabilities tend to not be at the table. Or if they are at the table, they’re ignored or their perspectives are viewed as inherently biased or they’re looked at as bitter or jaded. At least this is what I tend to see in my own interactions on these sorts of topics. I think as we move on to the need to discuss the issue of language across new communities is really critical. And by new communities I mean communities that we typically don’t talk about disability language in. Finding safe spaces where these dialogues can take place. Something I’ve been really excited to see in the last several months is Ebony Magazine has had a number of pieces by a writer named Alexander Harding who is a personal with mental health disabilities a couple hidden disabilities Alexander has been specifically talking about what disability means and how you talk about disability in African American communities. Another writer that’s been doing some really interesting pieces is David Perry who is outside of Chicago who actually wrote a whole piece about why he does not consider his son who has Down’s Syndrome a role model or a hero and why he sort of feels like he has to fight the hyper inspirational movement on a daily basis when it comes to bringing his son out in the world and raising his son to on grow as he grows up. You know, I think as we discuss language and we inform this discussion with the values of our community including self determination, you know, sometimes it means we have to think about how we process or accept the desire by members of our own community to be called things we may not like. You know, as a little person we see this I see this on a regular basis around the ongoing debates tied to the term “midget.” We have a group of folks in our community who like the term, who see nothing offensive by it. We have a group of little people who find the term very offensive and then we have a group of little people who then we have a group of average height parents that find themselves extremely personally offended by the use of the word. And so there’s a natural tension at least I see in the dwarfism community, and I’ve started seeing similar dialogues within the autistic community. As you’ve seen folks in the autistic community reject the idea, some folks in the autistic community reject the ideas around people first language and prefer to be called autistics, you know. I think it’s a really tough conversation to have and I really commend NDLA and Jessica and Diane into pulling this conversation together and it’s a very sensitive topic. I mean, I think something that’s been floating around on the internet, I don’t know how many of you guys may have seen it but there was a hashtag gaining some notoriety about a month ago and it was hashtag fuoi. And fu is what you would imagine the fu meant, and oi was osteogenesis imperfecta. It was pushed by non disabled parents of children with OI who saw OI as a terrible thing, as something that has to be cured and people living with OI found this a direct assault on their lives, felt that as they were seeing this hashtag pop up all over the intent and Twitter and Facebook that they were being attacked. And when they pushed back on it and said we don’t like this, we’re not comfortable with this, they were, you know they were told they were being disrespectful. They were told not to take it so seriously. And I think that’s something that as people with disabilities we hear frequently from the nondisabled community, that we’re being too sensitive.
As opposed to the idea that we’re exercising our rights to self definition and self determination. I can go on more but I want to give our other speakers a chance to talk. So Jessica, you can take it wherever you want to take it now.
>> Jessica: Thank you, Rebecca. That was a wonderful start to the conversation. Next I’m going to invite Max Barrows and Nicole LeBlanc from the Green Mountain Self Advocates, and if you want to say a little bit more about yourselves first, please go ahead and say that.
>> Nicole: Hello, I’m Nicole LeBlanc, I’m the budget watchdog and I’m known as the guardian inclusion in the state of Vermont.
>> Max: I’m Max, the outreach coordinator from Vermont and I’m proud to say that I live in the sticks and there’s more dirt roads than paved in this great state. I know that I have been kind of thinking about what I would like to present on behalf of our organization of why language is an important focus for persons with disabilities. I know that there were some questions that I sort of was thinking to myself and also trying to figure out how to answer them and also too there were some questions that I had ahead of time that, you know, were sent to me obviously that kind of helped me with processing some of my points I want to make around language and so do I believe that people first language is important? Yes, it is. We are in support of person first language because our message to society through person first language is we are not just a disability but we are person first and our disability comes second.
I was also asked what is considered respectful, and my response to that is this is why in our view person first language is important when you talk about people with disabilities, it is a way to steer clear of any labeling or words that are demeaning and discriminatory to describe a person and their disability. I was also wondering to myself and also was asked this question too how people with disabilities are talked about in our society through my observation on an editorial level. I do hear sometimes words that are still used in our vocabulary that are disrespectful when people with disabilities are talked about. For example, these are some of the terms I came up with through my memory of hearing, you know, being in conversations in the past and sometimes present. The words “special needs,” the term “handicapped” and sometimes the term “mental retardation” is still used in our vocabulary. And also people may not be familiar or think of person first language so you may hear people say the disabled or disabled people when they talk about persons with disabilities.
One thing I do want to point out when it comes to language too is I’ve heard these terms used when people talk about autism. Language like high and low functioning I’ve heard used to describe people with autism and where they are on the spectrum, and this to me and to our organization is discriminatory. I work with colleagues that use different ways to communicate, such as devices to type words that they want to say, and they, you know, they are just people that really think about, you know, the world and how to present themselves. And really they come up with brilliant ideas to contribute to the self advocacy movement and just you know, I just want to say when we talk about people with autism and where they are on the spectrum, we should not compare people with autism by using words that say people are better, quote unquote, or worse, quote unquote, than each other depending on where they are on the spectrum. People are smart in their own way and I just wanted to throw that out there when it comes to language.
Let’s see. Should we focus I wonder if my colleague here, Nicole, has anything to say before I go on or to add to this.
>> Nicole: Respectful language to me is all about respecting people for who they are. Words can lift a person up or tear a person down. And as a kid and an adult I’ve had to listen to siblings say the R word, the N word and other disrespectful words. I want to be seen as an equal between all my siblings and everyone else in society, not looked down upon.
>> Jessica: And Max and Nicole, do you want to go ahead and talk about the legislation that you all worked on in Vermont?
>> Nicole: We passed got a respectful language bill passed and the first step in it was removing disrespectful words in statutes. We had a work group that came together, looked at all the statutes and made a respect on what disrespectful words to eliminate. And we had lawyers involved and many other disability organizations. Then after that we went to doing the process of changing the statutes, getting legislation introduced to change the statutes.
>> Max: That was a good description, Nicole. And just to add to what you just said, when you mentioned our partner organizations, four years ago, like in the last few years we teamed up with partner organizations such as disability rights Vermont, the Vermont Center for Independent Living, Vermont Psychiatric Survivers, you know, the Department of Aging and Independent Living and other individuals, partner organizations that work for the state disability rights Vermont if I have not mentioned them.
What happened was in the process of we developed a team altogether and then what we did was we split up and took on the huge task of looking into the different state laws, and we found as a result, identify disrespectful language 29 out of 33 state laws and, you know, what we did was we suggested changes for all the offensive language in our report. And after this, it took a few years for about four years for these recommendations to become law but regardless of the amount of time and effort that we put into that, you know, it was worth all while and some of the just to give you some example of what we found in the law was words like idiot, lunatic, and even the word “retarded” but we definitely addressed change in the language used to person first language and using intellectual and developmental disability in law. You know, all the recommendations were listened to even though it was four years of a process, it was worth all the effort and the time and the work that we put into it and I am proud to say that this spring we had a big signing ceremony with the governor that was widely covered in the media and it was a good way for members in our organization to get the word out about respectful language also and why it’s such a matter to us. And it was such a good start in raising awareness about the power of language and what it can do.
The point I just want to make over all with this project is, you know, it’s a big issue in our membership that people with disabilities have had, you know, experiences where they’ve been bullied and harassed with so many like demeaning words like in their schools and just growing up and, you know, this was a great way for us to take on that issue by really putting the word out about, you know, language that is used in that manner and why it is important for us to get the message across about why persons with disabilities and how they feel about words like that are demeaning.
Really the overall thing we wanted to get out there is to our community that we are people and, you know, we have a lot to offer in our communities too and, you know, we understand that, you know, the law that we passed did not you know, it’s not going to change how people use language on the streets and stuff like that. We understand that we live in a country where freedom of speech really kind of dominates all laws that are, you know, that we pass that has to do with respectful language. But the main point we’re making is that, you know, people with disabilities, we deserve to be treated the same as everybody else. And it’s really about dignity and respect of all people.
And so, you know, that was, you know, really the message that we wanted to get out there as a result of this project.
>> Nicole: The real change is about changing attitudes and this is a step towards that. Because until attitudes change, we’re not going to have full inclusion in this society.
>> Max: Yeah. You know, I totally agree with Nicole. This also hits on, you know, we say this a lot here in Vermont but also addressed it across the country. We want the community and people to also presume competence. That’s a very big matter in, you know, our organization. And what I mean by presume confidence is don’t make an assumption about what someone can or cannot do. Give the person an opportunity to express who they are and just, you know, why and we have to offer. This bill, the respectful language bill was a great example of Vermont moving in that direction and so I just wanted to point that out there in addition to what I said yeah.
>> Jessica: Thank you, Max and Nicole. That was a really well said perspective and we really appreciate hearing about the work that you’ve done in Vermont and we’ll be able to talk more in a few minutes when we have our open dialogue. I do want to turn it over to our final speaker for today, Emily Ladau, and Emily, maybe you can just introduce yourself a little bit more and then take a few minutes to speak.
>> Emily: Yeah, absolutely. Hi, everyone. My name is Emily Ladau. I am currently a writer, social media professional and advocate. I interned last summer at the association of university centers on disability through the American association of disability internship program so I’ve been focused a lot on advocacy work and I have a visible physical disabilities, it’s called Larson’s syndrome. And today I am going to be switching gears a little bit actually because I agree almost 100% with everything that Max and Nicole said, and I think, you know, the work they’re doing is incredibly important. But I have perhaps what is more of a controversial view in that I actually prefer to use what’s known as identity first language instead of person first language so I do call myself a disabled person rather than going out of my way to say person with a disability. And I know that this might be shocking because a lot of people are, you know, taken aback by it at first. But then also quite a lot of my friends in the disability community feel the same way so I’ll just explain a little bit about what led me to this way of deciding who I am.
So I actually learned about the person first language movement when I was midway through college and I’m going to be honest, it was news to me. As I said, I was born with my disability. I always called myself a disabled person. I never thought anything of it. And then I had a professor who is nondisabled pretty much tell me that the way I had been defining myself was completely wrong. And a story I go back to that didn’t happen to me but to another friend of mine with a disability was that he was majoring in something called therapeutic recreation and this involved working with the disability community so he had to take an exam in order to demonstrate mastery of person first. And when he didn’t correctly translate one of the offending phrases, he didn’t get a perfect score on the exam. And to me this kind of implies the disability is set in stone, like the day of the week or the months of the year. So essentially, you know, the intention of person first language is incredibly honorable and, you know, so important to do whatever you can to show respect to people who have call kinds of disabilities but then it does tend to sometimes show a little disregard for people who are incredibly proud of counting disability as a part of their culture and their identity. So I should clarify that I’m not against in any way people using person first language, and I do switch back and forth occasionally. But my main concern is that anyone who has a disability be allowed to make their own decision about how they refer to themselves rather than having someone else, you know, dictate one specific way of referring to the disability community because by doing that, it kind of denies us the chance to fully embrace our disability.
And something that I thought about and perhaps in a bit of a twisted way but when you say it’s incorrect to put the word disabled in front of the person, in some ways you’re kind of perpetuating the same find set that you’re saying you’re going to overcome because you’re saying that disability is something that makes a person less than and needs to be sidestepped or hidden or pushed aside. You know, on the one hand you’re saying you see a person first and you see them as a whole being but at the same time disability is part of my being and, you know, a very integral facet of who I am so I’m proud to count myself as a disabled person but, you know, I’ll make a confession to everyone. I’ve had a very complex relationship with my sense of disability described my sense of identity and I used to try to avoid disability at all costs. I pretty much embraced it when it was convenient for me and then tried disassociate from it the rest of the time.
It’s kind of a way of thinking that if I only acknowledge my disability when I wanted to that it could somehow disappear for me the rest of the time. So to me that was me trying to be a person with a disability instead of a disabled person. And in that way because I’m a bit of a language nerd, everything was hanging on the word “with” for me. So if I could be with my disability then disability was just something I tagged along with me and I kept it in my back pocket and it wasn’t something that, you know, I embraced. It was something I was ashamed of. And really all this plushed was a bunch of teenage angst because I was young when I first started thinking about this. And I think a lot of it has to be sort of I mean, victim is a strong word. I guess victim of mainstream mentality because I went to a school where I was surrounded by people who did not have disabilities so I was never able to really let the disability aspect of my identity thrive. But then I think about it now and, you know, you wouldn’t call me a person who is brown eyed or a person with brown hair or a person who wears glasses I mean although I guess saying glasses wearing would sound a little silly. But, you know, those are all parts of me and I’m a Jewish person so you wouldn’t go out of your way to say a person who is Jewish. So to me I count disability as part of who I am just as much as the fact that I have brown hair all over my head. That is of course not to say that I think in any way, shape or form that you shouldn’t see me as a human being first or as a person first, merely that disability doesn’t need to be seen as derogatory and doesn’t need to be always tip toed around. So, you know, just to reiterate before I finish up, I totally do not claim that my belief on the matter are in any way the same, you know, for the rest of the disability community as they are for me, and I know from my own struggles with it that disability as any kind of identity is so highly personal and so subjective. But for me it is something that I’ve come to embrace and that is essentially the reason why I call myself a disabled person. That’s it.
>> Jessica: Thank you, Emily. It’s really fun to have some very different perspectives on the call. This will be great for discussion. Before I open it up, reback forgot to mention one thing so we’re going to give her about a minute before we open it up.
>> Rebecca: This is Rebecca. Thank you so much, Jessica. I had it on my list of things I wanted to talk about. And I think one of the struggles that we continue to have in all of the quote unquote specialization or the cutesiness as it were around disability language that we’re starting to see filter up within in some cases the parent and family movement really is a strong lack of connection to a civil rights framework. One of the things that I find myself always talking to when it comes to engaging with parents and families without disabilities who have a child with a disability, when they like to use the term handy capable or special needs is the fact that when you go through the disabilities with education act, if you go through Section 504 of the rehab act or the ADA or the developmental disabilities Civil Rights Act, in none of those pieces of legislation will you find the term “special needs” and none of those pieces will you find the term differently abled or handy capable. One of the things I continue to push and emphasize with these parents and with family members is that by using those terms you are in effect accessing your civil rights. I actually used the term yesterday with some folks that were very anti the term disability, the idea of putting on your armor. And I said, you know, when you go out into the streets and you’re fighting to get access to the curriculum or you’re fighting to get a job, you can get fired for having special needs. You can get fired for being differently abled. But as a person with a disability you have a recourse for those actions. Differently abled and special needs persons do not. It’s something that I feel very passionately about and I find that when you take that tactic with folks outside of our community they’ve never really thought of it that way because to them disability has always predominantly been something to be ashamed of, has been something to hide. But when you tangibly connect it to the access of civil rights every now and then I probably say about 50% of the time you tend to see the light bulb moment happen or the ah ha moment as it were. And I think it’s just something that’s critically important as we have these conversations around language. Thank you, Jessica.
>> Jessica: Thank you. I’m going to switch our system again so that everyone is un muted so hold on again. Now we can hear everyone. We have about 15 minutes. I want to open it up for questions.
>> Scott Cooper (indiscernible). I just wanted to add one more element into this language discuss. We spent a year scanning about a million photographs of people with disabilities online to find that our main objective was to find (indiscernible) living in communities (indiscernible) living successfully with a disability and the imagery was kind of appalling that (indiscernible) crafted into montages on (off microphone) and it was all about the positive (off microphone) another form of language, a visual language on how (off microphone).
>> CART Provider: He’s cutting out a lot and I can’t pick up everything he’s saying.
>> I just wanted to think about that (audio cutting out) and I also wanted to (off microphone) Rebecca, can you tell the story about the new school and how language intergenerational language from our community because we’ve had such great experience for the IEL and how we communicate (audio cutting out).
>> Scott, you have a lot of echo. It’s hard to hear you.
>> Rebecca: This is Rebecca. I’m having a hard time hearing you and I vaguely remember what we’re talking about but I have mommy brain so I am full of lyrics to yellow submarine right now and I’m trying to remember what we talked about in terms of leaders of the new school.
>> It was basically youth versus young people and how (audio cutting out).
>> Rebecca: Oh, this is reback. I now remember what you were talking about. It’s my bias against the term youth leader, correct? I think I know what Scott was talking about. Years ago when we first started doing words tied to the it’s our story project, there have been a long discussion about the bias that comes with the term “youth leader” and emerging leading and how even within our community the use of that language implies that you are not as valid of a leader as those that came before you or those that may be older than you. And one of the discussions that we had was the fact that Jude human was never referred ties youth leader when she was 22 and founded disabled in action. Justin dart was not considered a youth leader when he was 19 and founded the first pro immigration group at the University of Houston and that we even need to think in terms of our own community about the expectations that we set based on the use of language within the disability community.
>> This is Ann Masters from Newark Catholic church. In listening to all of the discussions from our presenters, I understand and agree with all of it in that I very much kind of try to present it both and I think that we’re in a transition in that the person first language probably is most useful for educating people who do not have experience with individuals with disabilities, recognizing that there is a full person, there’s a person beyond the diagnosis, not that and also to help people get in touch with the fact that each of us, while I do not live with down’s syndrome, you know, but I’m an adult with ADHD and I have arthritis and there are other, you know, part of helping people to recognize all of our vulnerabilities. But at the same time needing to respect if someone wants the identity first language that that’s important to respect too.
>> Max: This is Max from Vermont. I just wanted to point out that yeah, I mean, the whole thing with identity I mean we you know, identity first language, we respect that. You know, I mean, I hear a lot in, you know, the world of like the hip hop culture how African Americans take back the N word or people that are gay take back the word queer but I just I just wanted to point that out there. But it’s really like, you know, when we identify I think our message when we identify ourselves when we say, you know, person first and then putting our disability second, it’s really like we’re getting at, you know, changing you know, we’re going after derogatory terms that are used and the language to describe people that, you know, brings forth the attitude that we’re, you know, not people, we’re broken, you know, and we’re trying to get society to look beyond that because, you know, point being said here is, you know, we are trying to change the attitude of our society and change the mindset.
>> I agree with that. It’s almost like the person first language is more geared toward people who don’t have experience with individuals with disabilities.
>> Jessica: Anyone else want to comment on that or raise a new question?
>> You’re echoing.
>> Jessica: I know. I don’t know why we’re getting a lot of echo. If I can ask people who aren’t speaking to mute their phone.
>> Yeah, if everybody would mute their phones and only un mute it when they talk, we wouldn’t have the echos.
>> Jessica: Okay.
>> I am Deanna [NAME]. I am a Native American. I’m a great grandmother. I am many things. And I think that in our society we tend to want to put labels on everything and barcodes and stickers and say this is what a human being is, a person is. But people are never static. They are continually in a state of learning and growth until it’s not there anymore, until they move on. So for me I consider blindness a part of the package. It’s not a particularly important part of the package unless it prevents me from doing something I want to do. In my life, however, the only thing I haven’t done so far that I would have wanted to do is maybe jump out of an airplane or fly one, you know, as a pilot, not the passenger. So it’s not that important unless it’s the only part of my label that you read or that dominates, that jumps out at you, therefore I think that how we label ourselves is the important thing. And if someone else gets something else from reading that label, that’s their problem. It’s not mine. I don’t own that. It’s in their head. So all I can do is try to get them to read the rest of the package. So that’s my take on it. I think Native Americans often change their names or their labels, if you will, throughout their lifetime. They are given a name when they’re a child. If they earn a better name later on they’re given that. My name quite water is an anglicized version of an (indiscernible) word and it doesn’t mean that at all but it’s the c closest you can get because when you’re jumping from one language to another there’s sometimes not a direct translation. Perhaps that’s what disability is. It’s the linguistics of whoever is speaking it and therefore sometimes it doesn’t translate correctly. Not in the way the person that is using it means it to. I don’t know, that’s probably not making a lot of sense but that’s how I see the picture.
>> I think that was actually really insightful. This is Jessica. Thank you for that. I want to raise one other question before we have to get off the call. In our work as community organizers, I guess I’ll speak from personal experience. I’ve been in a situation where let’s say we’re building a community group of people with disabilities who are working on advocacy issues and some of those people are new to the disability rights world and often new to thinking about disability identity and seeing how language fits in with people’s internal process of starting to identify and feel comfortable and, you know, at some point ideally even proud of being a person with a disability, the language they use may change. But I guess I’ve been in a situation where we’re preparing for maybe it’s a city council hearing on an issue of let’s say it’s accessible housing and somebody is used to talking about wheelchair bound or being, you know, being crippled even or all different kinds of terms, right, that people use that I think many of us would agree are very disempowering and we often want to educate nondisabled people not to use them. I guess the question I have is how do we educate each other? Where is that balance between letting people choose what to call themselves and choose how to identify and sort of supporting people’s process of disability identity and challenging people to think about the language they’re using.
>> Well, that reminds me of a story that an anthropologist told me when they were doing work in New Zealand with the Mowry tribe and the whole essence was how do they stay in a state of bliss when they live in a persistent level of existence. They finally asked them this will question after they were there for a year to get access and the shaman pretty much said what is the greatest thing on earth? And these educated people are quite a bit older. They said please tells. They went from people to people to people. Taking a very ancient look at how we look at our self, it’s very sophisticated as how we as a community portray, elevate our dialogue to that ancient awareness.
>> Jessica: All right. I’m realizing we are at the end of the hour. Do we have a final word or a thought from any of our speakers?
>> Thank you so much for the opportunity to have us. Max again from Vermont.
>> Jessica: Thank you so much.
>> Emily: And this is Emily. Sorry. This is Emily.
>> Thanks for having us.
>> Jessica: Okay, I hear Nicole first.
>> Nicole: Thanks for having us and it’s been a pleasure being on this call discussing respectful language.
>> Jessica: Thank you, Nicole. And Emily?
>> Emily: Yeah, I was going to say of course also thank you for having me as a speaker but more importantly, regardless of differing views I was excited to hear other people get excited about an important issue so this was really great for me hear and I hope the conversation doesn’t stop here.
>> Jessica: Rebecca, did you have anything you wanted to say?
>> Rebecca: I just, to reiterate something I think we’ve already talked about it, I think the key is continuing to meet folks where they are and to lead them where they need to go in the critical terms of my colleague Lawrence Carter long.
>> Jessica: Well said. Thank you. And I also want to thank our captioner for being on the call. The transcript and the recording will be on the website within a week or so, so you can check there, disabilityleadership.org. And please definitely join us next month where we’ll be talking about bioethics and disability rights. And as Emily mentioned, we hope the conversation doesn’t stop here. There’s so much more to say. I have a thousand other questions and topics I would love to hear people’s perspectives on. So I would ask female make a moment now or later today, go on Facebook or the Organizer’s Forum ListServe, share a comment or a question that’s still in your head or anything you still want to say to kind of stimulate some more conversation and bring in some of the voices of people who were not able to be on the call today. And I think that covers it. Thank you again to everybody for participating and we hope to talk to you next time.
>> Thank you.
>> Bye.
>> Jessica: Bye.
>> Thank you.
(End of call)
This text is being provided in a rough draft format. Communication Access Realtime Translation is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.