Mindful Communication: Language and Disability Discussion and Best Practices

Mindful Communication: Language and Disability Discussion and Best Practices

Mindful Communication: Language and Disability Discussion and Best Practices

Thursday, February 7th, 2019


***This transcript provides a meaning-for-meaning summary to facilitate communication access. TypeWell speech-to-text service may not be a fully verbatim record of the proceedings. This language has not been reviewed or approved by the speakers and should not be used for direct quotation***



Speaker:  Thanks for being here everyone.  Keep hanging out. 


If anyone needs an assistive listening device, please see the desk to get one.  You can go back to chatting now! 


Hi again, everyone.  Good evening.  Thanks for coming.  I’m Lara Schweller.  Constance, please raise your hand.  We are honored to welcome you today on behave of MAC.  It’s an all volunteer organization with a steering committee of disability advocates across New York City.  We host free workshops and share best resources and practices online and use a cultural calendar to promote disability services. 


We started with working towards the goal of mutual support to make culture in New York City accbl for everyone.  We like bringing people together.  I encourage you to introduce yourselves and network with colleagues here and at future programs.  Thank you for sharing your passion for disability. 


Today we are joined by a series of speakers.  We hope today’s program will inspire you to learn about and reflect upon language and continue to ask questions and have an open dialogue. 


Our organizer for the event, MAC communications Ruth Starr. 


Hi everyone.  I am excited for this event.  Been a long time coming.  Excited for the panelists and that you will receive e-mails from MAC.  MAC has recently appeared different online.  Our new website launched just six days ago.  You can visit us at the old link that will bring you to the new website, MACaccess.org.  We hope you will find events and submit events there, cultural programs and everything will be there.  You will find new resources including a blog.  Look out for more info on that. 


Another initiative is our membership program.  We are thrilled to offer a membership that’s formal for one year.  There’s two variations, one for individuals, 25$ and another for institutions for 100 dollars. 

The perks of membership,  Want to emphasize that the core programs are open to all.  Workshops are available to the public. You notice we have captioning and other access services here. MAC support helps us incorporate these for all free of charge. 


I know we are vying to get to the panel, but if you want to know more about joining the steer committee we would love to talk you about that. We are accepting nominations. 


Turning it over to the NYPL team who is hosting us.  Lyman — come on down and musical chairs with me? 


Speaker:  Hi.  I’m Lyman Claiborne, a branch manager here.  Eventually you will meet Nefertiti Matos.  Happy to have MAC here and see all their hard work.  It’s nice to look out into the audience and see our own patrons and staff. 


Andrew high school is part of the Library.  Once I’m done speaking I have to go to a desk!  Part of our normal functions!  Then there’s a network consortium nation wide that helps people with impairments.  I came 5 years from the north Carolina library for the blind, I’m sure you can’t even tell. 


But we are happy to have you all! 


My boss wanted me to mention is a new project we are excited about.  It’s called Dimensions.  On the 2nd floor are 3D printers and ways to make spatial physical arrangements to make it accessible.  Don’t rush!  Just remember the name Chancey Fleet.  You might know who she is.  She is all over the country helping those who are visually impaired.  Just ask for her when you call the library and she can talk to you about 3D printing and making accessible objects for your patrons and clients. 


Back to MAC and all the lovely people here.  Thank you for coming.  I’m so impressed by the number of people here.  Thank you. 




Now I’ll turn it over to our moderator.  Thanks again for joining us! 


Moderator:  Good evening everyone.  I’m Lance.  I’m a steering committee member with MAC.  And we’ll start by introducing ourselves.  These are our panelists. 


Ann SOlario, Kevin Gotkin and Matos.  Each of our panelists I will ask them to share their names and their pronouns and their affiliations, identities if they would like and a visual description of what they look like today! 


Who’s first? 


Speaker:  Okay, I am Ansel Lorio.  I’m he/him. 

I am part of a committee created a Mt Vernon disability advisory board and I’m with the Confucius Institute, a Chinese cultural institution. 


To describe myself, I’m a white male, navy blue sweater, brown hair and brown eyes, I guess!  [Laughter.] 


Speaker:  Madison Zelepany, she/her, and I’m at the Whitney Museum and I’m an artist and disabled.  5’2 white woman, blonde hair wearing a sweater. 


Speaker:  Kevin Gotkin, he/him, a visiting professor at NYU and I work in disability studies.  I’m codirector of disability arts New York City with Simmie Linton.  I’m wearing all black, gray beanie and pink glasses.


Speaker:  Nefertiti Matos, and a trainer at this branch.  My pronouns are she/her. 

My affiliations are working proudly for this branch in our lot, but I’m a member and an officiate of the national federation of the blind locally and nationally.  Brown hair, eyes and skin, Latina female and I’m wearing a pink spring looking like coat.  But it’s warm!  This room is usually cold around here.  Thank you. 


Moderator:   Cool.  I’m Lance, she/her.  I’m access programs coordinator at the Brooklyn Museum.  I’m growing out my hair!  I’m white, queer and non-disabled.  I’m wearing a color block of pink pants and light blue turtleneck. 


Now we would love for you to introduce yourselves to the people around you!  We want to treat each other the way we want to be treated.  So share your name, pronouns, affiliations and identities and what you look like with your neighbor!  We’ll give you a few minutes! 


[Audience members introducing themselves to one another.] 


Please come back to your seats when ready.  Bring your conversations to a close.  This is the warning to come back to your seats.


Alright everyone.  Close up your conversations and come back to your seats.  We’ll shift the focus to our panelists. 


It was loud in here almost immediately.  That was a gorgeous thing to witness.  I hope that introduces opportunities for the future and I hope you met some people tonight.  We’ll talk about the intersections between disabilities and language. 

I’ll ask our panelists questions and then at the end we’ll open up for a Q&A.  So hold onto those questions for the end. 


First, what words do you use to talk about disability and how have you arrived at your current language choices?  Open to anyone on the panel. 


Student:  Well, I guess I’ll start. 


I would say that how I talk about disability has changed over the years mostly to do with my relationship to my own disability and how I have accepted it over the years.  I was born with this condition but I have only started to have other friends with disabilities recently.  I’ve accepted it more myself. 


I would say that I have become comfortable with talking about it in many ways. 


Speaker:  This is Nefertiti speaking.  I agree.  My language choices have changed.  I noticed a marked improvement with how empowering my language has become over the years as I accept myself and my place in life, and ascribe value to the things I do everyday. 


It went from being something I would hide or try to pass.  I am blind by the way.  That’s how I identify.  Once I came out to the world, as a blind person with a cane and acting more confidently, I picked up on things more especially language.  It has changed me, my outlook and how I speak about myself and speak about others and how I feel about things. 


Speaker:  This is Madison.  I want to echo what has been said.  My experience is similar.  I was born with my disability.  But when I was an adolescent it was the lack of language that prohibited me to talk about my disability.  The only time I was encouraged to talk about being disabled was in a medical context.  In the disability community my language began to evolve from something that wasn’t spoken about to idnty first.  I am a disabled woman.  It’s been empowering. 


Speaker:  Hi.  Kevin. 


Yeah.  The world, the terrain of language is complicated.  Myself I identify as disabled so I use identify fires language.  I have nonapparent disabilities.  But I swim through many categories.  Sometimes I just think language is not the most important thing.  So I’ll say neurodivergent, or having psychosocial disabilities or living with a chronic illness.  Sometimes it doesn’t matter.  The category in a larger sense of disability is a powerful cultural, political sphere. 


I just like to use that to kind of — some might think it’s not inclusive — but naming that as a larger category helps tell others my relationship to others.  We share an orientation to the world.  So I think language in some ways — it’s funny.  I watch people pass, and pause to read the cart on the street and I’m like that’s what it’s all about!  Just getting people to peek in.  The particularities are so situational for me!  So with language, lots of times the entry into feeling like you belong and that you are part of a community and then other times I don’t think language is what we focus on.  Let’s get to the work that’s threaded in but different. 


Moderator:  Would you like to add anything else? 


Student:  Yes!  Hi.  Nefertiti. 


I wanted to mention, or highlight something I believe Madison said.  As she found and correct me if I get anything wrong, as she found community she found herself as well.  I echo that experience.  It wasn’t until I found others like me that I felt I was finally okay to be me.  There were others.  If there were others out there in school, working, doing pretty awesome things, just as people nevermind those with disabilities or disabled folks, just as people because they can and want to and have a passion for it, that’s when I was like, you know what?  It’s not a big deal.  I’m blind.  It’s cool.  [Laughter.] 

[Group Laughing.]


Speaker:  Madison again.  Yeah.  I wanted to highlight about finding the disability community and how language is.  It gave me the tools to talk about disability because I think it’s so stigmatized where I grew up in Florida and it’s conservative.  There’s lots of pressure to sublimate.  If you don’t talk about the disability it doesn’t matter, and you don’t have to talk about it, whatever.  But it’s healthy to talk about it, and be able to be who you are and express who you are in precise language and not other language that people ascribe to you.  It’s important that it’s language that you chose yourself and with the community. 


Moderator:   Lance.  I have witnessed the ways that language is a barrier and an access point for people.  I like that you jostled the category and freed it up for us.  I hear about your journies and how people self identify.  Would you share your evolution of it?  Were that words that you once used or heard that you no longer use or hear?  And how have you seen disability change? 


Speaker:  It’s not a disability that I have, but I think there’s been lots of change in how we talk about cognitive and mental disabilities. 


When I was younger people still used the term mentally retarded.  People don’t use that term anymore except nasty people. 

[Group Laughing.]


But I think there’s a change with that and I think that has to do with accepting intelligence disabilities.  I think we use more terms like autism.  That’s one term. 


Can you repeat the question? 


Moderator:  Sure can.  Are there words you used to use that you no longer use?  Or how have you seen language change in your lifetime? 


Speaker:  Madison.  More than words, I think there were more words that I used to accept for myself. 


I’m wearing a person hat, and a cultural worker hat.  Sometimes people would call me handicapped or use words interchangeably that I didn’t have the critical skills to differentiate.  As I grew older I became more particular about who gets to define me and how. 


If someone wants to come into my museum and say I need an accommodation and I’m this, I don’t get to say, you can’t use that term!

[Group Laughing.]


If someone comes in and says they are crippled, I wouldn’t use that term, but maybe they do.  So yeah. 


Speaker:  Kevin.  Yeah I am interested in the way that personal histories with language are entangled with political histories.  So I think this is a great essay we should write.  How do you trace that?  Coming into the awareness of a word is powerful to understand the social and cultural formations around disability.  I don’t use people first language anymore.  Madison said this, but lots of people insist on people first language.  You see this in civic places. 


For lots of people it’s important to stress to the public that people with disabilities are people first.  That’s humanity and dignity.  Sometimes that’s not a given.  Coming into community and activist work in disability, that made we realize that relegating disability to something that you have or carry being not your whole self it’s like being scared of it. 


We talk about all abilities or differently-abled and we say, just say the word disability.  It’s important.  There’s history, and culture and community designated by that word. 


But I write and teach about this.  There’s ways that disability is invoked without being named.  I’m interested in that, like the marathon as a ritual of able-bodiedness.    It’s built into the culture with these rituals.  But I don’t use words like idiot, lame, dumb — there’s so many! 


Speaker:  Or crazy! 


Speaker:  I use that to describe the world though sometimes!  Like that’s out of the playbook of mad and crazy activists who insisted that individuals are not crazy, but the world is!  “The world is so crazy!”  We’ve been saying that for so long!  But only since 2016 is it more widely use!  [Group Laughing.]


But idiocy was this large category of mental intellectual disability for a long time.  When you look in the archives idiocy was in the names of institutions and asylums but it’s used disparagingly now.  When you trace that history to the political, you are like, wow.  Culture gave that to me for a specific reason.  So I try to have fun and subvert those histories.  I don’t call it out either professionally or I don’t like people to feel a way.  There’s something about being a person with diagnoses in the health field, like people will say don’t call yourself crazy.  So I try to honor that feeling, and don’t say, “please don’t use that Word.”  I try to call people in. 


Just talking about the histories of the words themselves, “let’s talk about the history of idiocy in all these asylums.”  [Laughter.] 

But that’s how it’s all been wrapped up in my history and my studies. 


Speaker:  Okay.  I guess I’ll go!  Nefertiti. 


What can I say?  I can speak to this in regards to my personal experience.  Growing up in a culture that tends to do body language type things and they fade away.   “Like she’s a nice girl but . . .  ” I grew up with that and not the language.  Can’t see.  Blind.  Visually impaired.  Things I identify with or don’t has been challenging.  So finding a space where it was okay to put out there and say was liberating. 


I’m also Dominican American.  Balancing that growing up and being someone who identifies as blind, is thought to be someone who is totally blind, but I do have usable vision.  Then it’s like, “why don’t you say visually impaired?”  That’s my personal choice.  Or I’m not in a position to correct others on their choice of words.  Maybe they miss the vision they once had.  They are entitled to that.  Entering into that conversation is a different story, but I am working on my own mind and not trying to change others minds. 


With my family it’s a constant struggle even now just to get them to face it, right?  Everyone knows.  It’s okay.  I just find myself sometimes literally screaming at someone.  Like Soy siega!  It’s okay! 


I make them nervous.  But that’s alright!  That’s okay!  That’s all I have to say as far as my evolution with language and words I used to use and no longer use.  I’m just grateful to have words to use and have the autonomy to choose what best fits me and match whatever fits someone else’s interpretation of themselves. 


Moderator:   Lance again.  I appreciate the ways each of our panelists push back against any easy “one size fits all” takeaway to that question. 


The next question, some of answered it.  But how do you prefer to be described.  The followup to that is how do you navigate situations when you are described in a way you don’t prefer? 


Speaker:  Ansel.  I think as long as you treat me with respect I don’t care what language you use.  I guess if you are describing me — yeah — in a negative way, or a way I don’t like, I would tell you that. 


Can you repeat the question?  Sorry. 


Moderator:   Certainly.  How do you prefer to be described?  And how do you navigate a situation where you are described in a way you don’t prefer? 


Speaker:  I had a bit of an evolution with that that has to do with respect.  The language others use I would get angry.  These tended to be people I didn’t know on the subway.  


One thing that bothers lots of people with disabilities is when people say “god bless you” or things like that.  I have evolved to the point where if it makes them feel happy, then I’m perfectly okay with it. 


Speaker:  Madison.  You have much more generous than I am! 

[Group Laughing.]


That’s a big question you know?  How do I want to be described?  How do I not like to be described.  I relate your answer about talking with respect.  Sometimes it’s not even the words used but how we say it.  People will mimic how I stand or walk.  And I’m like, I know you aren’t consciously doing that, but it’s in the representation of how you are mocking me or presenting me. 


So, it’s complicated.  It depends on the words that people use and they might sound offensive but maybe I’m close to the person and it’s contextual. 


The second half — what do I do about it? 


Moderator:  If you want. 


Speaker:  It depends.  How comfortable am I?  Is my safety at risk?  Is it a strange man in the subway and I’m alone?!  I might let it go!  [Laughter.] 


If someone uses disabling terms with me and it’s in my cubicle I might say, “not in my house!”  It depends on the situation.  I don’t always have liturgy for a litigible moment.  And that’s okay too. 


Speaker:  Kevin. 


My relationship to disability is not apparent.  So I don’t know how people describe me.  It’s not an operative category and that’s interesting to me.  We live in an ocular centrstc society organized around the myth that sight is a pure form of knowledge.  People seeing me as inhibiting normative categories as non-disabled is an interesting way that this resorting happens between disability and non-disabled folks.  Usually I do the opposite work! 


I tell them how I identify and then people are like, “you wouldn’t know!”  And I’m like duh!  Disability is everywhere!  Where did you get the idea that you could spot it!?  It’s interesting the monument to ableism in Hudson Yards.  It’s all stairs.  Thousands of stairs.  And there’s an elevator but so far they’ve only said that it’s just for the use of disabled folks.  And I’m like, okay.  So as a developer you are doing what the federal government can’t do?  You’ll just make that call on site!?  It’s such bullshit! 

[Group Laughing.]


But that’s the problem.  We often need to understand what disability looks like to feel like we understand what it is.  But I’m in the business of saying that disability doesn’t show itself so easily.  So that should invite you to explore people and see how they identify or politicize that community. 


Speaker:  Well, I think for me, again, more of a personal point of view here. 


Growing up I would hear words that now make me feel squeamish.  The word “amazing.”  I was such an amazing kid just for waking up and breathing!  And I grew up with that sense and developed a superiority complex based on I’m not sure what! 


But it was based on community and when I saw people living and doing, doing something that they weren’t supposed to do, it worked for me.  I compared myself to them and realized how much more I could be doing. 


Not to put myself down, because in many ways I am amazing and we all are — but I compared myself to these folks and felt I was at the other end of the spectrum.  They showed me everything I could do and all the places I could go.  That was helpful, 1, to bring my ego down to size, and 2, rebuff against this idea that because I am walking down the street alone that I’m this incredible thing to be stared after.  How do you do it?  Where’s your helper?  What are you doing out here?!


I have these people still help me across the street even when I say no thank you.  They still make up this whole story about me waiting for someone because how dare I do this dangerous thing of crossing the street on my own!?  So these words, just like the negative ones, we internalize them.  Getting them out of my system and realizing I’m just a human being doing the best I can just like anyone else.  If that leads to greatest, wonderful.  But just living, and trying to accomplish something in and of itself doesn’t mean I’m amazing just because I happen to be blind.  And that’s what you can see, that’s what’s evident.  But there’s much more going on.  So yeah, I don’t use those types of words again. 


Speaker:  Ansel again. 


I was thinking about how I like to be described and how I don’t.  One way, if you describe me just as that guy in the wheelchair or if you describe me without mentioning the wheelchair at all.  I find those two things ridiculous. 


I guess euphemisms for disability too really upset me.  There’s this Peter Cook Dudley Moore skit.  Moore comes in as a one-legged actor and he wants to play this role of Tarzan.  And Cook just keeps saying all these euphemisms for being one-legged, but never just says “one-legged.”  So I would say, just don’t use euphemisms.  Descriptive words aren’t dangerous.  They won’t blow up in your face. 


Moderator:  Perfect segue! 


What are your positions regarding “nice words?” – air quotes with my hands.  


So these words like normative or differently-abled. 


Speaker:  Nefertiti.  My answer is simple.  Just like Ansel said, don’t dance around it.  There’s no need.  Those words are for the sayer and not the people they are trying to address.  If it makes you feel more comfortable saying differently abled, and I’m not saying anyone in particular, and like you are giving me credit — “you aren’t disabled, but you are differently abled and you are overcoming it!  Good for you!” — that’s not okay to me. 


I’ve met people that use those words themselves though.  So back to a point I made earlier it’s important to listen to people and mirror the language they use, even if there means you meet five different people with five different kinds of language, that teaches you something.  But it also shows you the breadth of what language does and how people identify. 


I don’t necessarily agree that it won’t blow up in your face.  Some people are very sensitive.  If you say that person in a wheelchair, I mostly hear “wheelchair bound” they might blow up in your face.  Then that person with the faux pas they go away with a bad taste.  I hear that all the time where they might take it personally.  You don’t know what’s going on in that person’s life.  But no one is happy.  For example, the blind person is offended and the sighted person is baffled.  “I was just trying to help and it’ll be a cold day in hell the next time I try to help someone ever again.” 


But educating one’s self and listening, and if it blows up in your face it’s not the end of the world.  Try again.  Everyone is different.  You might meet someone else and they might be nice.  Don’t judge by one interaction.  I think I went ahead because I know the question is coming. 


Speaker:  Madison.  Let’s get them out of the way.  I hate them. 


To touch on what you said, I think you said that the nice words and the euphemisms have more to do with the other person.  Being generous, they might not of the vocabulary.  I didn’t and I could make the same mistakes as someone who is disabled. 


On the other side of the spectrum these words are a power exchange.  Like street harassment, condescending tones, these are the often with the intention of making the able bodied person feel more powerful than the person who is disabled. 


In trainings people say they want to offer assistance and help but they are afraid of hurting feelings.  And I say you can do those things without the value judgment.  It’s an everyday experience for people.  It doesn’t have to be a good or bad thing.  You can ask, can I help you with the door.  You don’t say,”I see your struggling, can I help you with that, you poor thing.” 


So thinking about language and how we use it, try to think about it on a spectrum. 


Moderator:  That makes sense. 


Speaker:  Kevin.  Yeah I want to echo what’s been said about “nice words.”  Nice words are also patently inaccurate in many ways.  People with special needs.  That’s used in an education context.  Access to education is not a special need.  The location of the problem is often improperly assigned.  It’s not the person who has special needs, it is the educational system that can’t offer equitable accessible education to everyone in a public way, to the population.  So that’s an insidious “medical model” that’s assuming that disability is individualized and about a person’s physiological or mental embodiment.  


I’m just rehashing a section from a book, Claiming Disability published in 1998, whose author is my partner.  But the social model insists that disability is a socially constructed category.  The barriers are not natural.  They are based on assumptions on who is normal and who can inhabit certain spaces easily. 


Its interesting that sometimes the nice words are retreating to everyone.  The impulse is “we are all different.”  It’s like a real impulse.  In these spaces people want terms to describe everyone.  “Everyone is different!” Okay but that’s so banal and such a basic claim or move to make, and it covers the specificity of the truth of the disability community. 


So design and architecture of all these things is also very interesting.  The way it’s described is it benefits everyone.  That’s true, you know.  People move through the world differently.  But universal design was informed and designed by disability culture and that community.  So when I hear “it’s a matter of differences and people have different challenges” these narratives undo our recognition of disability history, culture and community. 


Speaker:  Yes.  Amazing! 


Speaker:  Ansel.  I want to talk about normative.  And able-bodied.  The problem I have is where do you draw the line between someone who is disabled and who isn’t?  If there’s able bodied people, then professional athletes are SUPER able bodied people! 

[Group Laughing.]


It’s very difficult to draw the line.  Its just a continuum of how able or non-able we are to do certain things. 


Oh yes, then there’s disabled athletes!  In a way I guess some part of their body is super! 

[Group Laughing.]

That’s a great one!  Now I’m just more confused. 

[Group Laughing.]


Speaker:  Kevin.  I’ll add there’s Paul Longmore, a disability historian.  He refers to the “severely able bodied.”  Again a way of redeploying this medical jargon.  I love that.  It plays with language to throw back the assumption about severity — and that’s another word that accompanies the language of disability.  What was I gonna say?  Nothing.  That’s it! 

[Group Laughing.]


Moderator:  Ansel again, you are like my plant for all my transitions!  My next question, what is your thought and positions on the term “able-bodied?”  What do you think about able-bodied?  Able-bodiedness? 


Speaker:  Kevin.  That distinction.  When disability has so many gradations and shades and different ways of inhibiting the category, I think disability is a community you come into.  Knowing and associating with the history of the category and getting politicized around what it means to identify as disabled is the most important thing.  You are called in and you have a humility about your individuality to a big category that’s a powerful historical force. 


I don’t tarry on this level of like you count, or you are in and you are out — I’m like prove it!  You use these descriptions, but I think that’s the most important than what counts as disability.  Let the institutions do that, the places that don’t protect us have those conversations.  WE need to get to work. 


Moderator:  Other thoughts? 


Speaker:  Ansel.  I was thinking about the thing with able-bodiedness, and I was reminded of the Ray Bradbury short story where they all try to make everyone at the same level by putting people in chains to put everyone at an equal level.  It’s dystopian.  It’s not good for everyone to be at the same able-bodied level.  Just wanted to add that. 


Speaker:  Madison.  The only thing I can think as a joke is, it’s okay to be able-bodied.  It’s fine.  I think I’ve started to use the term non-disabled but it used to be more subversive.  I feel like able-bodied is a bad term now.  Both these terms though are flawed, but there’s a history there that’s being honored.  We could talk about that, I don’t know. 


Speaker:  This is Nefertiti.  I struggle with this term truthfully.  Because I feel pretty able!  I might not be able to take a sheet of paper handed to me and read it, but I could open up an app on my iPhone and tell you a few minutes later what it is.  Even if it’s upside down!  I gave a presentation recently and that was called to my attention and I was like, superpower! 

[Group Laughing.]


Sure, I can’t drive a car, or fly a plane.  But I don’t want to do either of those things!  Especially in Manhattan. 


But I feel pretty able!  Pretty able to handle my business on my own, have a good life and good friends and relationships.  But I do have a disability, apparent and non-apparent ones.  To call someone able bodied that’s not a term I use.  It doesn’t come to mind readily.  I don’t know.  You are a person and I am a person.  I can’t do some things, but you can do things some other things.  We are people.  I’m happy that language continues to evolve, because in this case I think it needs to.  We need to find better terms. 


Speaker:  Kevin.  I rarely get to say I’ve written about a topic!  But Madison says the negation and the diss that does to ability has an interesting history.  I have written about this.  A major text explains that distinction between ability and disability is the philosophically the basis of modern medicine.  There was a time when you didn’t need that binary.  The body was made of humors and vitalistic with invisible forces.  But then it comes on the scene that these men of medicine need to quantify these things and the physiological functions of the body.  And that distinction, that prefix dis determines normalcy in quantitative terms.  But just living is not indexed at all. 


I feel like the unit should be disability and non- should be used to negate that!  I want to just throw that back at the whole debate. 


Moderator:   So I would love to turn to you all.  We have 15 minutes left for the program.  We are open for any questions and we already have hands in the air!  Mic runners — these are on cords.  Creativity is necessary. 


Speaker:  And please identify yourself when you speak.  Thank you. 


Moderator:  Pause for technical accessibility please. 


Speaker:  Hi.  I’m Ruth and I am profoundly hard of hearing, and just looking at me you can’t tell I have a hearing loss.  I introduce myself by my name, and if necessary I tell everyone exactly what I want them to do.  I say, please don’t speak to me until you can see the white of my eyes.  I don’t say, “look at me!”  If I specify about the white of my eyes though, then you understand exactly what I need. 


I find that having a sense of humor also makes life a little bit easier. 

[Group Laughing.]


Speaker:  Hello.  I’m Svetlana and I am deaf.  I’m surprised there’s no one who is deaf or hard of hearing on your panel but anyway.  I have an opinion about the vocabulary being used. 


I know lots of deaf people don’t like the term “hearing impaired.”  We prefer the title deaf or hard of hearing and we don’t appreciate the label of impaired.  But I see people in the blind community are fine with “visually impaired.”  So it’s interesting to us.  When you describe the term in general do you use “disability” or “visual impairments?” I’m not speaking of the individual situation, but as a broad general category.  Like as a term on a website when you would describe the categories under Disability, what language would you use. 


Secondly you talked about the term able-bodied.  As a deaf person, I perceive myself as able bodied.  My legs walk, my hands move, but I can’t hear.  For me, the term able bodied is awkward.  Because I feel that my body functions fine, but my ears don’t function in terms of auditory perception. 


So non-disabled, — I never use able-bodied.  I might say, “people in a wheelchair” as opposed to able-bodied.  That might be the way I would apply that term but for me, the term able-bodied doesn’t make sense when you consider all the other capacities. 


Third point!  There’s an argument in the disability community as person first, or identity first.  Should it be people with, or disabled people?  I could be comfortable with both of those.  People with disability in the United States it seems to be the prominent term.  But in the UK they would put the identity first, as disabled people.  I think culture has an impact on those choices. 


Speaker:  Nefertiti speaking. 


I want to answer the first and third aspect of your question.  I tend to not speak for a people.  BUT, I belong to an advocacy organization.  They are The Voice of the Nation’s Blind or that’s their tagline.  That’s caused lots of controversy!  People are like, I don’t even belong to your organization!  Don’t speak for me! 


But they pride themselves on the term blind.  Whether you can see as much as legal blindness, over 200 vision or if you are totally blind, they are comfortable with the term blind and they think you should use that term.  There’s nothing wrong with it. 


But yes, lots of people use that term and they are comfortable with it.  I think that’s okay. 


What’s the third part?  Oh my gosh.  I knew that was something about it!  Thank you. 


With language as identity or person first?  I think person first sounds odd!  I don’t go around saying woman who is brown. 

[Group Laughing.]


I just say a blind woman.  I happen to be proudly Latina.  And I take it from there.  I feel like it sounds awkward to say.  And I don’t find other communities speak this way.  While I understand the importance of putting the person first, recognizing us as people, but to me that’s given.  I’m a human being.  Whether I can do something or not.  Quite the way people are traditionally used to the way that thing being done. 


Speaker:  Ansel.  I want to say that I think person first language is important when it’s very formal writing.  I am part of a group, a disability board, and we have talked about this.  For official governmental things I think it’s a good standard.  But in other contexts it doesn’t make that much sense. 


Speaker:  Madison again. 


You mentioned websites and Ansel is talking about formal writing.  For the first part of the question, I would avoid using impairment with anything on my site.  For a draft it’s people who are visually blind . . .  Or for a tour in American Sign Language.  I don’t think we need to lead with impairment.  When people use it it’s because it’s in the verniclr for them and a generational thing?  I’m not sure. 


To Ansel’s point, for a long time I have felt, “oh identity first because I am a disabled woman,” but I want to reflect what is in vogue on my site.  I want people to think I’m in the know.  I’m glad we are having this conversation.  Maybe we are ready to take the plunge into identity first on my website.  I hope my institution believes that people with disabilities don’t have to prove their humanity if we believe that disabled is not a dirty word.  I’m not making promises, [Laughter.]  But maybe we are ready to adapt over people-first language.  I’m struggling with it still as you can tell in my response to the question. 


Speaker:  Hi.  I’m Karen Casein and a accessibility consultant.  I feel like just trying to describe someone’s ability or disability like I’m walking on egg shells and I don’t want to feel that way.  I’m in my 60s.  You were describing someone who had visual imperfections, we would say visually handicapped and we were all okay with that. 


Then it was visual impairment.  Now we are on partially sighted.  I’m wondering, what do you do with this?  I never mean to offend anyone, but I am asked all the time how to refer to people missing their eyesight.  If you refer to the person before the disability it makes the sentence twice as long.  I want to just say “blind community.”  So what is proper?  What do you do in this instance?  I think in the blind community we are not as sensitive.  It’s okay to use lots of terms, but sighted people have this trepidation around how to refer to us rather than those in the blind community. 


Speaker:  Kevin.  Good question.  What do we do?  I’m sure lots of people here want to answer that question. 


I noticed that non-disabled folks use terms as a deferral technique.  They come to these events and they learn how complicated it is, and man is it complicated!  [Group Laughing.]


But my call is always to say that language reflects you know, society and culture and politics.  It’s complicated but there are reasons why things come and go.  Language always changes but there are ways to study it.  I see it as a call in. 


Leading with humility as a tactical strategy.  Just saying often, I’m learning about this and don’t be ashamed to say you don’t know.  People feel like you can’t admit you are learning.  Especially if you work in a place where you work with the public.  But it’s important to get new inputs. 


Disability twitter is a trove of people debating the fine points of things we are talking about!  It doesn’t mean you need to leave knowing the litany of categories.  The invitation is to the complexity.  It is an in and you can know more. 


I caution against the complexity that you don’t do the work of inclusion. 


Speaker:  Hi!  I’m Cindy Vanenbosh.  This has been an excellent panel so thank you so much. 


I want to go back to this — alright — I serve on my community board in Brooklyn and we wanted to take an opportunity to take the dis- out of disability and we renamed our committee.  But people get it all wrong!  They keep misnaming us.  We tried to embrace this progressive language but we are losing people because they don’t know what our committee is all about!  So now I’m like should we be “accessibility community?” so people know what we are doing. 


We are working with staff with a fear around language.  If they use identity first language and get that pass, they might use these outdated terms that completely offend visitors.  So thinking about terms on websites, there are these shifts in design and there’s nothing wrong with that, but the balance between advocacy and equipping staff with the skills to communicate and not using the wrong terms to offend.  The person first I think is the safer way to acquaint people who aren’t that engaged with the disability community. 


Could you speak to navigating between wanting to be progressive — Madison you said maybe we should shift to identity first on the website.  But just speak to being progressive and breaking barriers and giving a social model, but speaking to various audiences and educating staff about needs with disability communities visiting your site.  I know this is a can of worms. 


Speaker:  The disability community is huge.  Huge.  We are in different spaces and relationships to the disability community. 


I think if you want to create a disabled space, right?  Then you lead from the community, right?  If you want to create programs that celebrate disability culture, and disability arts, you bring in those people and do the work. 


I’m tip toeing around the question but I want to say, maybe we need to make mistakes and not be afraid of that.  It doesn’t mean we can’t follow best practices or it doesn’t mean we can’t do the work and read, and talk to people.  But I think there’s still unknowns and nebulous opinions.  But I think — I don’t know — we need to not be afraid to make mistakes.  Invite the people in that embody the goals we are trying to do for these programs and the advocacy work.  That way we can actually come to something.  


Speaker:  Wouldn’t people disagree?  4 people say one thing, 6 people say another — it drives me nuts. 


Speaker:  I feel like there’s nothing wrong with people disagreeing.  It’s the texture of the community.  If you agree, it gets boring. 


The question of what to call the community — I wrote that down.  It’s such a recurring question you know?  I think maybe we touched on the move away from disability and why some of us would say “just say the word.”  But accessibility is beautiful and it encompasses so many things like even socioeconomic accessibility, offering childcare at meetings — these are all accessible features.  I like that a lot. 


Language.  Nefertiti and I were talking about language accessibility.  That affects neuro-divergent communities and English language learning communities.  Like providing accessible PDFs and PDFs in other languages.  So I think it’s beautiful. 


Moderator:  We are at time and I want to respect everyone’s times.  I do see hands with burning desire though in the air.  But I wanted to acknowledge the time and see if we could take one or two more questions of the panel?  I know this is a very performative question. 


But people want to hear more.  So I will free you up to respond to the time if you need it.  We will take one or two more questions. 


Speaker:  Thank you.  Just wanted to comment about that last one I think it was a doozy for all of us. 


But I would suggest, you are a community board and serving a community so put it out there to the community.  Find out what people want you to call the committee perhaps. 


My question, what do you think of taking back the language?  Like in terms of terms that maybe are considered rude, offensive, oppressive, and making that language your own. 


Like Crip coming from crippled or “cripping a space.”  Are there examples that you know that you think are interesting and cool? 


Speaker:  Ansel.  I would definitely say that when I am in a space with other disabled people that’s when I use terms like crip.  But the problem is that I looked up crip on google and it was all about the Crips gang!  So there’s a problem with that word that has nothing to do with disability! 

[Group Laughing.]


Audience Member:  Hi there.  I was interested by Kevin’s comment on there’s a way to evoke disability without naming it.  You are all involved in the arts, museums, or are artists yourselves could you give examples of how you evoke disability? 


Speaker:  I was talking about that not in an aspirational way.  It’s about how complicated the language is.  Disability is built into how we talk all the time.  It’s not a take down but the title of this even, mindful communication is that we use our minds in one direction and bringing a neurotypical awareness — there.  There’s nothing wrong with mindful and all it’s connotations but disability is being named without it being named.  This idea of being more thoughtful in a way, not all of us communicate with our minds.  Some of us lose our fucking minds.  So mindfulness is not how we operate. 


But I wanted to say that’s like a fundamental part of the language landscape.  And you are not going to get out of that.  So I was wondering about evoking that in a more living way and I think you do that through making spaces more accessible.  That’s when you do the work of calling in without celebrating all these tensions we are talking about today.  Does that help? 


Moderator:  Last question. 


Speaker:   Hi.  I’m Jean Ryan and from Disabled in Action. 


Speaker:  Wooo! 


Speaker:  Thank you.  We are looking for a space.  We are getting kicked out.  We meet on Sundays and it’s hard to find an accessible space on that day.  So please suggest anything to me. 


I wasn’t always disabled.  I was very active in my pre-disabled life and I slowly became disabled.  Once I got to the point of needing crutches and wheels, I took courses and thought a lot on disability and awareness.   But now, I really don’t care. 

[Group Laughing.]


In one book I read, or essay, it’s out of print but it was really interesting.  It was about what more or less is normal.  It really spoke to me.  But I just don’t get offended by what people say.  I don’t like physically challenged, but I feel like I took the challenge and I lost.  I don’t see it that way.  It’s only when looking at it through someone else’s eyes and not wanting to offend but I really don’t care. 


With my friends, we will say, like, “oh I played the crip card to get into the movie.”  Just to get in!  They say all the seats are sold.  And I say, okay I’ll bring my own seat!  Like the event tonight!  So events, they don’t usually include wheelchair users when lots of people are allowed into a room. 


I don’t like being called a fire hazard and I had a problem with that recently but I am fighting back.  I am not a fire hazard.  So if someone says it’s wheelchair accessible, then I am not a fire hazard.  But I don’t dwell on it.  I dwell on getting into places, and equality.  Like getting through the court systems and going around on the sidewalk, riding the subway and buses, that’s what I pay attention to rather than terms. 


But I did notice that many people when they become disabled later in life, they don’t want to see themselves as disabled.  They are a senior with a problem, a little problem, even though it means they can walk very little and need to be driven place to place and can only go from the street into the building, something like that. 


But there’s a resistance or non-awareness or something that they see themselves like they used to be.  And they just couldn’t be disabled like me.  I’m a senior now for sure.  But I see that resistance for people to accept what they have, or how they are different, or the problems they have now compared to when they were young.  But let’s face it.  We won’t be like we were when we were 20.  We lose abilities.  Even if it’s not overt disability. 


You just can’t do a handstand or whatever anymore.  I mean, that doesn’t impair you daily life, but it might when you play Mother May I with a five year old. 


The way I see it, as I get older — and I know people are born with disabilities — but it’s what makes us people.  Now I’m losing my hearing.  I have had vision problems all my life but they didn’t really affect me daily but now they are.  But hey.  I just go on.  People do that in their lives, no matter if they are naming themselves or not.  They might go into a museum and not realize the print is too small, or they can’t hear. 


They just realize they can’t see at that moment, or hear it, or like in the Guggenheim they can’t go up or down the stairs.  But they don’t think of themselves as disabled.  There are all kinds of thinking about this.  So I see why you are having problems with your committee. 

[Group Laughing.]


But I don’t think naming is the biggest deal.  Whatever you call yourself if you put it in your mission statement, people will get it.  Thank you


Speaker:  Nefertiti.  Ma’am what’s your name? 


Speaker:  Jean Ryan. 


Speaker:  Well, I wanted to say that you “took the challenge and lost”?  I feel like you are taking the challenge everyday and you are winning! 


Speaker:  I don’t feel that way, but when people talk about disability as a loss, you know, your are physically challenged.  Heck, you are physically challenged when you have to go up 50 steps in the subway!  Everyone is challenged them except for extreme athletes!  I can’t do any of them.  So what?!  I want to get up and down in an elevator anyway! 


So I think that term is weird.  I know people say that though.  They don’t want.  To think of people as damaged goods, or they are embarrassed.  I’m not going to get mad at someone, oh, because you are handicapped or crippled.  I make a distinction only when I am getting someone a sign in their business, like a funeral home that I signed up for.  I will die eventually, no time soon, but I told them what to put on the sign.  Just do a wheelchair symbol with the arrow so people know where the ramp is.  They will get it even if they are not in a wheelchair.  Stuff like that. 


Moderator:  This is lance.  I’m thrilled to be in the position to cutting you all off.  Because there’s so much to say.  But I want to be sensible with time.  A hand to our brilliant panelists.  Thank you for doing the social labor of talking about disability in public. 


MAC consortium members?  Some are around in the audience if you want to talk.  Thanks for coming out and thanks to the High school library for hosting us. 


Speaker:  We close at 7 PM, guys!  So please, don’t give our staff extra work! 




***This transcript provides a meaning-for-meaning summary to facilitate communication access. TypeWell speech-to-text service may not be a fully verbatim record of the proceedings. This language has not been reviewed or approved by the speakers and should not be used for direct quotation***

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