PEOPLE FIRST LANGUAGE

WORDS WITH DIGNITY FOR PEOPLE WITH DISABILITIES

APRIL 19, 2011

CAROLYN PHILLIPS: Okay, everyone. We're going to

go ahead and get started. And we're doing something a

little different today.

Liz and I are usually side by each when we're doing

this, but we're in different locations. And so we're going

to be going back and forth and doing this in a virtual way,

even more virtually than it already is.

And so we're really glad that all of you are with

us. This is a very, very important topic. And I'm going

to, in just a few minutes, cover why we chose this topic

and why we had people request this topic for us to cover.

But, Liz, do you want to give them a little

introduction to our webinar room so that everybody will

know how to navigate this more effectively?

LIZ PERSAUD: Thank you, Carolyn. And I absolutely

miss being beside you too.

Hey, everyone. This is Liz with the Pass It On

Center. And hopefully you can hear me loud and clear. If

not, please feel free to type into the public-chat area,

and I'll do my best to speak a little bit louder.

But again, welcome. And thank you so much for

joining us today. It looks like we've got a lot of people

jumping on actively, and we really appreciate that.

And I'm very excited about the topic that we've got

here for you guys, People First Language, and just really

words with dignity when talking about or speaking with

people with disabilities.

As Carolyn said, she'll jump in in a few minutes

and mention why we're kind of taking a little break this

month as far as not talking specifically about AT reuse but

kind of jumping into this topic.

But before we do that, I'd like to do a little bit

of housekeeping rules and just kind of do a brief intro of

the webinar room.

So hopefully everyone can see the slides that we

have up. It's the title slide with the Pass It On Center

logo and the title of this webinar. If you have any

difficulty with that, please feel free to let us know.

You can also refresh your screen to make sure that

you are able to see it. And what you to do is, over on the

left-hand side at the very top, there is two green arrows

that kind of look like a little bit of a recycling symbol.

And you can just click on that, and that will refresh your

screen.

If you need to adjust any of your accessibility

options, what you can do is go into "Options." There's a

tab for "Accessibility," and you can adjust your screen

settings. And if you're using any type of screen reader or

anything like that, it's pretty self-explanatory. It can

help you with that as well too.

Over on the right-hand side we have a public-chat

area. Some of you can see, if you jumped on a few minutes

ago, that we've been kind of typing back and forth, saying

hello to some folks and doing some little tests on whether

the chat is coming in.

So feel free, if you don't have a microphone, to

type into the white box. It's just underneath where the

icon says "Emoticon" where you can do all those fun smiley

faces and things like that.

But feel free to type in any questions or comments

or anything that you'd like to connect with us on if you

don't have a microphone right there.

Underneath that you can see the list of -- just as

Carolyn just put up her smiley face.

And we've got Cheryl G. just saying "Just testing.

1, 2, 3."

Thank you, guys, so much.

Underneath that we've got a list of the moderators

that are on here: Myself, Kimberly Griffin, Carolyn

Phillips, and Caroline from ATIA, and the list of

participants underneath.

If you do have a microphone and you are not using

the typing for public-chat area, what you need to do when

you speak is to hold down the "Control" key on your

keyboard.

You need to hold down the control key as you're

speaking. And as soon as you're finished, if you could

release that "Control" key so that Carolyn, myself, or

anyone else who has any questions or comments can jump on

and speak as well too. So again, just hold the "Control"

key down, and as soon as you're finished, just let go.

We want to say hello to Kimberly Griffin. She's

our transcriptionist. She joins us on all of our webinars

for Pass It On Center.

We really appreciate you being on here today,

Kimberly.

But Kimberly is going to be transcribing this

webinar. This webinar is also recorded. So if you give us

about three to four weeks, we will have this up on the Pass

It On Center website underneath the "Webinars" tab. And

you guys will be able to access that and use it as well and

be able to listen to it and share it with your co-workers

and community as well too.

We wanted to let you know that we have credits

available for this webinar. We're very, very happy to be

able to offer this to all of you just as another incentive

to join us on these webinars.

We're able to offer CEUs, continuing education

units. We do this through the AAC Institute. So a big

thank you to the AAC Institute.

So if any of you are interested in getting CEUs,

what you'll need to do is just log on to the AAC Institute

website. And it's aacinstitute.org. You can get the link

off the Pass It On Center website under the "Webinars" page

as well too. You're able to get all the information there

to register and receive your certification.

Now, I just want to put a little tickler note in

there that we are working with the AAC Institute. They've

got all of our information for webinars. They've just had

some administrative issues on the website, and so they're

working to get all of the information up on the website.

I've gotten a lot of e-mails behind the scenes that

you haven't seen the webinar information up already. Just

be patient. And again, if you have any troubles with that,

please feel free to send me an e-mail or give me a call,

and I'd be more than happy to intervene or help in any way

I can.

We are also offering CRCs -- we are very excited

about being able to do that -- CRCs for this webinar. And

if you are interested in CRCs, if you haven't already,

please send me an e-mail with your name, organization,

city, state, and the e-mail address to best correspond with

you. And what I will do is, after this webinar in the next

few days, I will e-mail your verification form.

So my e-mail address is liz@passitoncenter.org.

And you can send information about CRCs, any questions

about the webinar to me right there.

And I see that Cheryl G. has a question. And

thanks, Cheryl G.

She says, "Is there a test or any other step to

obtain CRC credits?"

If you are able to -- if you have your CRC

certification, you should be able just to send me the

information, and I'll send you the CRC verification form.

And it has the instructions there to go ahead and turn that

in for you to receive your CRC credits.

I don't know if Carolyn wants to jump on about

anything with CRCs as well. But I think that's pretty much

what you just need to do.

We also just have -- if everyone could actually

give -- type into the public-chat area -- excuse me -- with

your name and information, the organization that you're

with, what that does is help us to build our roster to

offer these credits. So that's something that's very

important.

So just as I'm kind of doing these housekeeping

tips here, just type in your first, last name and

organization that you're with. That will, again, just

really help us out.

The next slide here says "Help us improve." And

we'll actually put this information up at the end of the

webinar as well too, but -- just as Carolyn did.

Thank you, Carolyn. Thanks, everyone.

But we'll actually put this up again at the end of

the webinar. But again, this helps us to improve our

webinars, to make sure that we're covering the topics that

you guys want to hear, that you need to hear.

This is some information that we've received on our

webinar feedback on this topic that we're providing with

you today. And this also helps us to provide more -- to

continue offering those credits to you.

So again, after the webinar, if you could just jump

on the SurveyMonkey, fill out the webinar evaluation. It

shouldn't take you more than five minutes to do so. And

just give us feedback on this webinar and any other

webinars that you have any information on.

I also wanted to give a quick shout out to Caroline

Van Howe from ATIA. She's joining us today under the

"Moderator" section.

Hello, Caroline. And thank you so much for joining

us on this webinar today.

Wanted to let everyone know that the Pass It On

Center will be having an AT reuse substrand at ATIA Chicago

of this year, 2011, and also in Orlando, 2012.

This is something that we've done in previous years

past. And what we're doing this year is actually tying AT

reuse into the existing strand. So we're very excited

about that.

Pass It On Center will be sending more information

out as we are able to formulate and organization more on

the ATIA AT Reuse strand for Pass It On Center. So please

be looking out for that.

Also wanted to let everyone know that the call for

papers for ATIA is still open. It's open until April 29th.

So you've got just a few more days to get all that

information in. And if you have any questions, I'm sure

you can e-mail Caroline Van Howe and also visit the ATIA

website, which is ATIA.org.

So I think that's pretty much set for the

introduction. And I will release the mic and pass it over

to my good friend Carolyn Phillips.

Here you go, Carolyn.

CAROLYN PHILLIPS: Excellent. So glad that y'all

are with us, as we said before.

I just hit the refresh button, and so everybody

should be seeing a slide right now that says "Why are we

here today?" And let me know if you do see that slide.

UNKNOWN SPEAKER: Yes, I see it.

CAROLYN PHILLIPS: Excellent. Okay.

So this is a topic that Liz and I have talked about

for years, the whole concept of people first language,

person first language. It's not necessarily something that

Liz and I came up with.

Actually, we have peers all over the country that

have been working on and leading the way with this whole

movement of using words with dignity and really thinking

more about our language.

And so we're happy to continue that and join forces

with folks like Paraquad and our peers in Kansas and folks

like Kathie Snow, who have been so visionary in the way

that they use language and have helped all of us start

using language in a more thoughtful way.

And part of why we selected this topic for the Pass

It On Center strand for our webinars is because a lot of

folks, they produce materials; they put out brochures; they

name their organizations, what have you. And sometimes the

name of the organizations or the materials that we print

out could also be somewhat offensive in the language that

folks use.

For example, there was a group that we were working

with who called their organization an organization that

helps people who are crippled and -- that are crippled and

I think maimed.

And that language is not just old school and makes

you think, Well, that organization should have been around

in the 1800s; but it also says a lot about how that

organization views the folks that they are working with or

the folks that they serve.

And so we provide a technical assistance to folks

all over the country and actually in other countries about

what their brochures should say and using words with

dignity and just thinking more about language.

And so we're very happy to share some of this

information with you today. This presentation that we're

doing for you today, we're going to do it in an abbreviated

fashion. There's a much longer session that we have done

and that we do.

Once again, Liz and I have done this all over

Georgia but also throughout the country. And so if you

want more information, we'd be happy to share it with you.

So why are we here today? We're really here to

master our skills. We know that a lot of you know this

information, but it's not always at the top of our -- or

the tip of our tongue whenever we're expressing the work

that we do or whenever we're thinking about ways to

communicate with folks.

So we're here to master our skills. We're also

here to expand our knowledge. And we see this as a

dialogue. We look forward to learning from you also. So

please feel free to share.

And we're also here to build stronger bridges and

really create inclusive and united communities, not just

within the assistive technology/reuse community or the

assistive technology community in general throughout the

United States but also the disability community and the

general community.

And so realizing that we're all truly peers here.

And we're all learning from each other. We're all going

through this life journey together. And so what is it that

we can do to help each other further along the way?

There's some statistics that we want to share with

you. And one of those -- very important statistics. This

is from the U.S. Census Bureau. And it's an older

statistic, but we know that it is actually true.

And it's that one out of every five Americans has a

disability. So that's 54 million Americans reported some

level of disability in 2005. And that's a large number.

And of these 54 million individuals with

disabilities, they affect their ability to see, hear,

communicate, reason, walk, perform other basic life

functions.

That right there, we're actually quoting the public

law that funds the AT Act. That's in the law. And as we

know, that number grows every day.

And the thing that we want to get people thinking

about is it's amazing -- with all the advances that we had

made in the medical field, it's amazing how many folks are

living, and they're surviving, and they're thriving.

And as they continue to do that, then we're seeing

that, as people age and they age in place, that they really

are -- we are, in the disability community, creating the

largest minority group in America.

This group, without a doubt, it cuts across racial,

ethnic, religious, gender, sexual orientation, sex, age

boundaries. And anyone can become a member of this

minority group. So you, too, if you haven't already

joined, can sign up.

So Liz, I'm going to pass this on over to you for

the next few slides.

LIZ PERSAUD: Thank you, Carolyn.

One of the things I wanted to touch on about the

individuals with disabilities being the largest minority

group and cutting across all sorts of boundaries of life.

We have an acronym that we throw around in the

disability community called TAB, T-A-B. Some of you may

have heard of it. And what it stands for is temporarily

able-bodied, because that's the thing, is that that

54 million is cutting across all sorts of spans of life,

and it doesn't discriminate.

Anyone at any given time can join my population or

join our population, if you will. And so that's the thing,

is you never know who you're dealing with on a daily basis.

So we're hoping that this webinar and some of the

topics that we're covering today will really kind of get

your brain stirring, get your thought process stirring on

how you've related with people with disabilities, how

you're putting out your materials, how you're operating

your program, and how we can always be more effective in

the future as well too.

So this slide says -- it's a guiding principle,

something that we have here with the Pass It On Center that

we truly believe in.

And it says: Disability is a natural part of the

human experience and in no way diminishes the right of

individuals to be independent, enjoy self-determination,

make choices, to go to school, to have a job, to vote, to

eat at the restaurant that they want to eat at, to shop at

the mall that they want to shop at, to just be in society

and be fully included and fully integrated in all aspects

of life.

Again, this is public law from the Tech Act. And I

often say -- Carolyn and I both often say that this is a

beautiful piece of legislation. It's one of my very

favorite pieces of legislation because to me this says that

we are all made the way we are.

Yes, we all have a few differences. But if we just

take a look back and kind of take off those blinders and

those shaded glasses, if you will, we truly have more

similarities than we do differences. And that's one of the

main points that we want to get across today.

So the thing is is that people first language is

the use of words that reflect awareness, dignity, and a

positive attitude about people with disabilities.

Language is continually evolving. We'll talk about

that in just a few moments. But words do make a

difference. They can hurt. The whole little saying of

"Sticks and stones can break your bones, but words may

never hurt," it's not true.

I don't know who came up with that. I never said

it. I never sang it with my peers on the playground. But

it's not true. Words can definitely hurt.

The power of language. Language is absolutely

powerful. It's continually evolving. And that definitely

includes language related to people with disabilities.

And one of the points that we're going to get

across today is that staying current is important, and it's

not necessarily to show that you're being PC or politically

correct but to communicate effectively and with respect.

And with that I'm going to pass it to Carolyn.

CAROLYN PHILLIPS: Just like Liz was saying, it

really is not about being politically correct. I know that

that's one of those things that a lot of people get

frustrated with. I remember back in the '80s people were

like, "Oh, it's so PC," or what have you.

It really is about conveying what you feel about

other folks. As my mama says all the time -- or used to

say all the time is, "What I say and the words I choose to

use to says it say much more about me than they do about

whatever I'm talking about." So language is important, and

it's key.

In 1993 the U.S. Department of Ed and Office of

Civil Rights offered guidelines for referring to people

with disabilities that are consistent with what we now call

person first language or people first language. So we

started seeing it back in 1993.

We also saw this occurring as legislation

started -- people on the federal level started taking words

out of legislation such as the word "handicapped" and some

other words that weren't really accurate in one way, but

they also just weren't very thoughtful in what they were

conveying.

The words -- just like we were saying, the words

used to describe us have power to make us feel valued or

feel demeaned. And it's just a matter of what is it that

you really want to say with that brochure? What is it that

you want to say with the name of your program? What is it

that you want to say in your presentations?

A lot of times people will play upon the pity

factor. And they'll say, "Oh, you've got to give to these

poor crippled people," or, "Oh, goodness" -- I heard it

just the other day on the news.

I saw a commercial that followed the news, but the

news report was sensationalizing that so-and-so was

stricken with a stroke, and they're going to be maimed for

the rest of their life.

And it was heartbreaking the way they were telling

the story, but it was sensationalized. And it was

definitely conveying this image of the individual they were

talking about not one of power and not one of, oh, well, I

bet this person can live independently; I bet this person

can contribute. Instead it was, oh, look at the pitiful

life that this person has now.

And of course I wrote an e-mail to the news and let

them know what I thought about that. But there was a

commercial that followed up right after. And it was for an

organization that was trying to solicit car donations.

And the language they were using again in that

commercial had to do with, if you donate your car, you can

help people who are mentally retarded.

And I was like, wow, I haven't heard that term in a

long time used in the media, especially with the wonderful

campaign that was out there. I don't know how many of you

saw the signs that said that retarded is -- it's not okay

to use that term. Label clothes. Label fruit. Don't

label people.

And just how there's a whole movement trying to get

folks to really think about their language. So it does

matter. It really does matter.

I love this quote right here by Mark Twain. And it

says, "The difference between the right word and the almost

right word is the difference between lightning and a

lightning bug."

Mark Twain I think had it right on with that

because I would much rather tangle with a lightning bug

than lightning. I don't know about you, but I definitely

feel that way.

And I think that a lot of times that is what we're

tangling with. It's that big a difference in how powerful

our language really is.

So value-laden language. I was introduced to this

concept when I was a freshman back in the early '90s back

at the University of Georgia. And I've always liked this

concept.

And basically what it is is just what I was

expressing before, that what you say says more about your

values and how you feel about a person or a topic or a

group of people than it does about that individual or that

group of people. And so it's important to be mindful.

So what you say and write could enhance the dignity

or inadvertently reflect on stereotypes or negative

attitudes.

I often am telling young folks -- because they'll

say things like, "Oh, you're such a retard," or, "That's so

retarded." And I will remind them about, what are you

really saying? Tell me what you really mean by that.

Because it's not a fair statement to make. And just be

mindful of what you're saying and the importance of that.

Some words and phrases don't recognize really the

broad range of capabilities of people with disabilities. I

have learning disabilities. And there are all kinds of

images that I think people, whenever they find that out

about me, when I say, "Oh, I have learning disabilities,"

people come up with all kinds of images in their head as to

what that really means.

And so I end up having to spend, if I feel like it,

time educating people about what that means to me. I'm

dyslexic.

And the other day I was talking to one of my

nephews who's 18, and I said, "Oh" -- he asked me to read

something, and I said, "Oh, I'm dyslexic." And he goes,

"Oh, I'm so sorry." And he came over and gave me a big

hug. And I was like, "What do you think I'm telling you?"

So who knows what images people have in their head

about what different things we say. So it's important that

we pay attention to that.

The other thing that was kind of funny though is he

was telling me how courageous I am. And I haven't been

called courageous in a while for having a learning

disability. But I thought it was pretty funny, especially

knowing that we were going to do this presentation.

People with disabilities don't need or don't want

to be pitied, nor do I have to be seen as courageous or

special just because I have dyslexia or because you can

accomplish daily activities or go to work or get dressed or

what have you.

Liz and I often use the example -- and there's

unfortunately countless examples of this, as you know; one

that just popped up with my nephew. But I've seen it so

many times with my mom, for example.

She has Huntington's Disease, and she's a

wheelchair user. And when we take her out in public,

people will come up to her, and they're saying, "Oh, you're

so brave," and, "It's amazing. Look at you. You're

amazing."

And of course in front of my mom, she just smiles

and nods. But the thing is, is she really brave? Yes,

she's brave. But is she brave for getting dressed and

going out into public? It might be more brave not to be

dressed and go out in the public.

So the thing is we need to be mindful of what is

really brave and what really is amazing. Is it amazing

that somebody with a disability just shows up for work? Is

it amazing that somebody without a disability shows up and

goes to work?

So we just need to be more thoughtful, I think,

about what it is that we really are saying and not use

these sweeping words.

And, Liz, is there anything that you wanted to add

to this? I know you've got all kinds of examples that

would help illustrate this more.

LIZ PERSAUD: I do have all sorts of examples. And

I can probably conduct a whole series of webinars on all of

my examples. I put up an emoticon, Carolyn, because I'm

laughing over here, not being right beside you, laughing at

all your stories and all the things that we've been through

together.

But, yeah, that happens often. I will even be out

with friends, even with my team members, with Carolyn and

Martha, Trish, and Joy. And people will come up to me and

say, "Oh, it's so good to see you out."

And it's like, really? I have a job. And if I'm

not out, I'm not even going to make money and have a

paycheck and just be able to be independent and do all

those things that I need to do just to have a life and to

be living like everyone else.

So it's really interesting how people will kind of

come up and do that. And I do know in my heart of hearts

that people do mean well and all of that.

But it's just something to think about as we are

relating to people, and especially as we have our customers

coming in to our organizations, all the AT reuse programs

across the country.

You never know who you're dealing with on a daily

basis. We want to show that we're friendly and that we're

accepting and that we are empowering people, that we are --

you know, people are coming into our centers, and we're

giving them equipment, or we're giving them brochures and

advertising what we do.

And we're saying, We support you. We're able to

provide you with the tools that you need so you can be

independent; that you can have that confidence when you go

back out into the community, go to work -- you know,

whether it be on the job or playground or at home so you

can just be the best that you are and focus more on your

abilities as opposed to your disability.

So as Carolyn mentioned before, value-laden

language, it says more about our values than it really

truly does about the person that we're relating to, that

we're writing about or speaking about.

The thing is that all staff members should be

sensitive to the language they use in referring to our

customers that come in our doors every day. We need to

focus on referring to the condition instead of the person.

And when we do that, we end up devaluating the person.

People first language is about referring to the

person first and then the disability afterwards, if needed.

Now, granted, in the line of work that we do, we often have

to work with folks to do fittings for chairs, or the issue

of disability comes up.

But just be mindful how you address that, and often

taking the cue of the person that you're speaking with as

well too.

As I mentioned before, we never know who's walking

in our doors at any given time. And as we said in the

beginning of the webinar, folks with disabilities are the

largest minority.

It may not always be visible. It could be

temporary. Some may have more than one disability. Just

because I am sitting in a wheelchair and I roll around and

scoot around town and do my work and scoot around the

office and do things that I do doesn't mean that that's

just my one disability. There could be other things going

on too. So it's just things to be mindful of and to be

open minded of.

It could also be the staff member who has a

disability. Either way, the person is not his or her

disability.

And, Carolyn, I'll pass this on to you.

CAROLYN PHILLIPS: So great points there, Liz, as

always.

The value-laden language, what it really does is it

promotes distance and stereotypes, and it pigeonholes

folks.

There's a fundraiser person, professional

fundraiser that I was talking to not long ago, and she said

that you can raise all kinds of money if you could just get

folks to donate by making them cry.

And I was thinking, What in the world? What in the

world? And she said, "Oh, in your field it would be so

easy to get people to give money because all you have to do

is make them cry."

And I was thinking, I have all kinds of ethical

issues with this. This is totally counterintuitive to who

I am. And as far as I'm concerned, we're in the business

of empowering, not in the business of making everybody cry

and feel pity.

But just the language that she was using. Yes, I

feel certain that she could raise lots of money. She's

been very successful.

I was talking to my dad about this not long ago.

Is this the right way to go? Do you try to raise money by

making people cry?

And he's like, "No. Absolutely not."

And so the thing is, the value-laden language, it

promotes distance and stereotypes. It reduces a sense of

self-worth and power and self-direction.

And so we want to make sure that we are very clear

in what it is that we're trying to do. And when we say

that it's promoting distance, what actually does happen is

there's a "we" versus "they." It's good versus bad, strong

versus weak, high expectations versus low expectations,

sick versus well, superior versus inferior.

And what I mean by that -- I can use an analogy

right now or tell a story right now of my daughter Meera.

It's interesting because, whenever I tell people,

I'm like, "Oh, we have a daughter. Her name is Meera, and

she's from India."

And everybody's like, "Wow. That's so cool."

And I'm like, "Yeah."

And then I talk a little bit more about Meera. And

then sometimes when people meet her, they're like, "Oh, you

didn't tell me that she walks with an AFO," or, "You didn't

tell me that she has cerebral palsy."

And I'm like, "Well, How does that really apply?

Because I was telling you about who Meera is."

And I could tell that it changed their point of

view. Like all of a sudden they have lower expectations of

Meera. They see her as weaker as opposed to strong. The

survivor who was on the streets of India. But if she has

cerebral palsy, then it's a little different perspective.

I see that some folks are saying that the audio is

dropping out. I apologize for that. Unfortunately, that's

the way that some of these webinars go, especially when

we're working with firewalls within agencies. And I truly

apologize for that. And thank you for hanging in there

with us.

We would encourage you to avoid certain words that

really invoke pity or even fear. As I said a little

earlier, when I'm watching the news or listening to

newspapers [sic] or what have you, I hear these things,

these words often.

Just sitting in conversation, especially lately,

I've heard people use words like "abnormal," "afflicted,"

"stricken with."

There are people, aside from my nephew, who have

actually said, "Carolyn suffers from dyslexia."

And the truth is that I do not suffer from

dyslexia. My partner suffers from my dyslexia because she

has to do our bills. The IRS has suffered from my

dyslexia. Other people have suffered from my dyslexia, but

I wouldn't say that necessarily I have done that. I don't

own that.

Yeah, it causes me some struggles. And, yes, it

would probably be easier if I didn't have it, but it

doesn't mean that I suffer from it.

And, Liz, I'm going to turn this to you because you

have a good example for some of these also.

LIZ PERSAUD: The last word on this last -- the

words that we are encouraging folks to stay away from, you

know, think about that in your mind.

Sometimes when we're doing this in front of a live

audience and we're in the same room as people, I'll often

ask people to read that last word. And it's interesting

how over -- you know, the slur of words happening, the

sounds in the room, I'll hear the word [pronounced]

"in-valid" over "invalid." And that's what I see.

I know we often talk about that, Carolyn and I,

about what these words really mean. And we've talked about

that word invalid where people will say -- you know, I've

had family members say, "Oh, that's where my cousin lives,

and there's her daughter who's also an invalid. But, boy,

does she get around town." And it's like what does that

really mean?

Or when people say I'm a victim of muscular

dystrophy or I'm stricken with it. I've had people say --

oftentimes when I was growing up, they'd ask me, "What's it

like to be in a family where all your siblings are normal?"

And I'm like, "Really?" I think sometimes I'll be

looking at my brothers and my sister, and I'll say, "I

think I'm the most 'normal' one of everyone there."

But what do these words mean? So again, it's just

words that we -- as Carolyn said, that they evoke fear;

they evoke pity. And if you're sitting there reading those

words, it's a scary thing.

I mean it's not like it says puppies and kittens

and cupcakes and marshmallows. I mean look at all the

words up there. So definitely words that we encourage

everyone to stay away from.

And I also wanted to ask the question, and anybody

can feel free to type it in, What does the word "handicap"

mean? We often hear that word out in the community. I

know that I'll speak to folks, older generations, and they

sometimes still use that word.

It's a word that we hear often that we know that's

in our history, that's in print, that's out and about when

we're everywhere.

But I encourage everyone to think about that word

"handicap" and what it really means. And for those of you

who don't know, the word "handicap" is actually another

word that invokes pity, fear. It definitely invokes

negative images. And it's an archaic term.

The wonderful thing is that it's no longer used in

any federal legislation whatsoever.

There are many meanings of the legendary H word,

handicapped. But the one that is the most often known and

that we believe in is that it refers to a person with a

disability begging with their cap in their hand. So

basically the word handicapped means beggar.

So when you are out in the community, when you are

putting together your documents for your program, for your

organization, if you often find yourself moving towards

that word, really think about the origin of that word and

what that means.

You'll notice out and about as you're shopping or

just driving around that a lot of -- they'll say --

Handicapped parking signs. Exactly. Thank you,

Jim, for writing that. They should change handicapped

parking signs.

A lot of times it will say "Accessible" now.

And I'm actually going to release the mic for

Carolyn because, Carolyn, I know that you often will go and

speak to businesses that still have signs up that say

"handicap." And I'm wondering if maybe you can give an

example of how you've done that to encourage some folks as

well too.

Actually, before I release it to you, I'll read the

question from Cheryl G.

Cheryl says, "Do you think most people with

disabilities are offended by the word 'handicapped' or just

people who work in the field? I'm asking because I've

heard people with disabilities refer to themselves as

'handicapped.'"

And you're absolutely right, Cheryl. It's kind of

that situation where you'll hear people with disabilities

referring to themselves as handicapped, but some find it

offensive.

Really and truly, it's a word that we generally

want to stay away from because of the meaning of it really

coming to surface and people realizing what it is.

It's something that I stay away from. I know that

our team does. A lot of my friends and family stay away

from.

The truth is that not many people knew what it

meant. It's something that they really and truly grew up

with. And it's kind of those words that, if you grew up

with it, you don't really know any better, if you will.

And oftentimes I'll speak to friends that have the

same exact disability that I do. We'll just be hanging

out, and I'll hear them use that word. And it makes me

just kind of cringe and just grit my teeth.

And I often will explain to them, "Do you know what

that word means? Do you know what it says when you refer

to yourself as a handicap person or a handicap individual?"

And oftentimes they just don't know.

So thank you, Cheryl, for asking that question.

And, Carolyn, I'll release it to you to maybe talk

a little bit about talking to some of the businesses out

there and what that means.

CAROLYN PHILLIPS: Excellent. Thank you, Liz.

Jim, I wanted to address what you said first, that

they should change the signs, the handicapped parking

signs.

I've actually talked to folks that are sign makers

and said, "You know what? You ought to just say

accessible."

What's the big difference when it comes to just

printing a sign? And it's a huge difference when it comes

to people realizing who they are in the world, if you will.

My daughter, for example -- and, Cheryl, this gets

to where your question is. My daughter, she can tell

instantly, if somebody uses the term "handicapped" versus

"a person with a disability," how they're going to treat

her.

A lot of times folks that use the term handicapped,

even though they may not mean to feel this way, they often

are -- they'll baby Meera in some ways, or they'll treat

her differently. And she has gotten to where she just

doesn't even like the word.

It's just -- what it says is that you're not

up-to-date, if you will; that you're -- and it's not about

that language changes necessarily all the time and, oh,

that was so cool ten years ago, and it's not cool now. It

really goes back to that that word in particular is just

not -- it's not a great word.

And every community has those words. Whether

you're talking about folks that are gay or whether you're

talking about folks that are from different cultural

backgrounds or even folks within the feminist movement.

So language obviously is important. And, Cheryl,

I'm so glad that you agree.

And I think that's Carollyn, my friend Carollyn.

Hi.

And I think you're asking, "Is 'disabled parking'

an acceptable use?"

Well, I think it's okay. But once again, it would

be better if you just said "accessible parking." That

would make it even more friendly, and it would make sense

to everyone. People know usually what the blue sign means.

But yeah.

And, Liz, do you have anything you want to weigh in

with that in particular, and then I'll move forward?

LIZ PERSAUD: That's a great question, Carollyn at

Sussex. We think that's Carollyn. And hello.

And, Carolyn Phillips, I definitely agree with you.

"Disabled parking," I'm just kind of on the fence about it.

I just feel that "accessible" is more universal, if you

will. It's a little bit kind of moving into that whole

vibe of universalness and everyone just kind of referring

to themselves as more neutral territory, if you will.

So as Carolyn said, the symbol for accessibility,

the blue sign, is getting more recognition. People know

what that means. So definitely "accessible" is my

particular preference.

This slide here says "Definitions." And on the

left-hand side we have "disability," what that means as in

relation to the word "handicap," if you will.

"Disability. Impairment or limitation, whether

physical, mental or sensory," is what that relates to.

And then "handicap" is more of that "External

condition imposed on a perhaps resulting from a disability.

Stairs are a handicap to someone who uses a wheelchair."

I'm sure that we'll talk about that more in detail.

But we often say that disability is often the consequence

of the environment.

Carolyn and I were just mentioning that to a group

of folks we were speaking with yesterday, that I don't ever

think about my disability until I become -- I enter a

situation or become face-to-face with a situation where the

environment is not accessible to me or I'm unable to reach

something or I can't access a restaurant or I can't be with

my friends or my family or my teammates on the Pass It On

Center team because of the access, because of stairs or no

elevators or curb cut -- there are no curb cuts, if you

will.

So it's more of the environment that proposes that

someone is disabled in my eyes.

These next couple of slides share a little bit of

disability negative language on the left-hand side and

disability neutral.

Over on the left-hand side of this slide it has

"disAbility Negative." So things like "the disabled, the

blind, the deaf" referring to these groups, kind of

clumping them together.

And over on the right-hand side under "disAbility

Neutral," you'll see it says "people with disabilities, the

disability community, the blind community, the deaf

community.

"Crippled, suffers from." We talked about that.

So person, first language, has a disability, is a person

with a disability.

Even "impaired" or "impairment," that word will be

tossed around often. And we just want to say more of

person with a disability, again, has a disability.

So again, more disability negative versus

disability neutral, moving more towards disability neutral

language. So instead of the disabled, the handicapped, the

people with disabilities. Again, we just talked about

accessible parking, accessible entrance.

This one at the end always makes me laugh. Just

because people will come up to me and say, "Oh, goodness,

Liz. What's it like being confined to your wheelchair?"

Or, "There's Liz Persaud. And she's wheelchair bound."

So it just sounds like an awful, awful horror

movie. What does that mean to be confined to a wheelchair

or wheelchair bound? I'm not chained to my wheelchair. I

get out of my wheelchair. I get out, and I sleep in a bed,

and I like to sit on the couch. I love to go swimming.

I don't see my wheelchair as something that I'm

confined to or bound to. It's a tool that I use. It's my

assistive technology that I use every single day to help me

be more independent, to work fully and put my best foot

forward.

So more of that friendly language would be

"wheelchair user" or even "person who uses a wheelchair."

And I'm seeing that Carollyn Kowalski -- hello,

Carollyn -- she said, "It is Carollyn K," and "Hello back.

"I think I would argue that using 'accessible

parking' would not dissuade folks without disabilities from

parking there. Too many of them do now. That's why I

thought 'disabled parking' was more authoritative."

And that's definitely true. And I agree with you.

Carolyn Phillips, do you want to add anything to

that?

CAROLYN PHILLIPS: Yes. Actually two thoughts were

running through my mind.

One would be the disability parking, disabled

parking. Yeah, it's obviously a legal thing for a lot of

folks. You need to have a permit to park in a lot of those

spaces, obviously. And so -- and I think that it's just a

matter of us raising awareness overall.

We here at Tools For Life -- and we'd be happy to

send this out to anyone who wants it -- we have little --

it's actually a little piece of paper that says "Parking

Violation," and on the back it explains why it's important

not to park in accessible spaces if you don't need them and

if you don't have the papers, if you will; if you don't

have the tag and the right to do that.

And it gives more information, and it refers people

back to our website where we have more information about

that.

And I know in Jacksonville and in some other

cities, too, they've started deputizing folks with

disabilities to start giving out tickets to individuals who

are parking, if they don't have a visible display that it's

okay for them -- either the tag on the back of their car or

something hanging from their mirror or whatever is approved

in that state, to be able to give them a ticket.

And I think that's actually pretty empowering. I

know some of my friends who have done that, and they really

like that.

And, yes, I can definitely send that up, Carollyn.

No problem. Would be very happy to do that. We're always

trying to get more people to jump on the bandwagon.

And so anyone that would like those, just let us

know -- let Liz know, actually, and she can get those to

you.

The other thing, going back once again to the

question that you asked, Cheryl G., about the term

"handicap" and how folks use that term, that if they are a

person with a disability, then they use that term even to

refer to themselves.

I've heard that too. And usually, just like Liz

said, she'll try to educate that individual. I do too. A

lot of times people are using language that they have heard

from other folks to develop their own self-identity.

And that's why all that self-determination,

self-esteem, all of those things, that that type of

training is so powerful to help somebody really get an idea

of what are your strengths, and what are your weaknesses,

and who are you really in this world, and are you going to

accept labels that other people give you; or are you going

to make your own way and go that different road, if you

will, you know, your own path, find your own path and your

own identity. So I do think that there's a lot to consider

there.

I was working with some folks that are native

American. And they were telling me that in their tribe

they don't even have a word -- in their native language

they don't even have a word for people that have

disabilities because they see it as just a variation of who

people really are.

They don't see it as something that has to be

labeled and tagged and deemed as different. They just look

at the person and -- it's a very nonjudging way to look at

other individuals. So I really like that way of looking at

that.

So, Cheryl, hopefully you'll get sound back.

It goes on, the disability negative, slow learner,

retarded, developmentally delayed, person with a

disability, person with developmental delays.

Same thing -- a lot of times I've heard these even

recently about dwarf or midget. So you would actually say

little person or a person of small stature.

And then the list continues, especially this last

one that says "homebound." I was talking with a group of

folks that are within the religious community, several of

them. And they were representing churches and synagogues

and other people of faith and communities of faith.

And several of them -- and once again, it was

across denominations and across religion -- they have

homebound programs. And they were like, "Oh, no." They

hadn't thought about that, you know, that that could be

seen as negative. And similar to wheelchair bound.

My mom is classified as homebound, but that doesn't

mean that she's bound to the house. It just means that

it's difficult for her to get out, basically. She's at

home a lot.

And so the whole homebound concept, it does invoke,

once again, pity and other things that come to mind when

you think of folks who are homebound.

So they were talking about, "Oh, we're going to

change our program title for that." And I thought, Well,

that's good. It could just be helping out your neighbor or

helping out other people.

And, yes, you're exactly right, Cynthia. That for

public services, that there is a policy definition that

ties to that, you know, some of these definitions,

actually.

And I think we can define, what does that mean for

someone to be -- for it to be hard for them to get out?

What does that mean? And still provide services but not

necessarily have to use terms that are invoking some other

type of reaction.

We also try not to use generic labels like "the

homebound" or what have you for groups. So we avoid using

whole groups like "the deaf" or "the blind." Oh, they're

part of the blind or the paralyzed and just grouping folks.

I've heard that before. I've heard people actually

say, "Oh, I know so-and-so, and he's a crip," or,

"So-and-so, they are LD," as opposed to it's a person with

a learning disability or they have learning disabilities.

It looks like here -- and I'm trying to read

this -- that -- the word "bedbound." Well, I think it's

along the same line of thought, that you could just say --

and some people would actually say that my mom is bedbound

at this point. And so rather than saying -- I don't think

I've ever used that term with her. As a matter of fact, I

know I haven't. I would say it's just difficult for my mom

to get up out of bed.

If somebody needs to ask, or if they really need

that information -- the truth is, I think a lot of times we

over share in the disability community. I think we give

way, way, way more information than people would want.

I think that HIPAA in some ways is violated like

crazy. I think confidentiality is violated like crazy

within our community. And that can be frustrating because

it's trying to balance educating folks but then also how

much -- when is it too much to share?

Person first language or people first language, it

avoids generic labels, and it really emphasizes abilities,

not limitations.

You can avoid -- and it's important to do this, to

avoids euphemisms that are condescending. I've heard

people, even recently, "So-and-so is blind as a bat." And

I was thinking, I wonder why they're using that, and why is

that okay to say?

And then really and truly I think a lot of the

terms that we use that are so demeaning, most demeaning but

seem to be culturally okay and even the stamp of approval

on are those with folks that are people with mental health

issues.

And so we'll say things like, "Oh, so-and-so is a

lunatic," or, "They're just crazy," or, "That's the

craziest person I've ever seen," or, "So-and-so is a

wackadoo."

And should we really be throwing around terms like

that? It's not really a fair thing to do.

It's also important to avoid implying illness or

suffering. So just like we said, "afflicted," "suffers

from," all of that.

And I am going to turn this right back over to Liz.

Actually, I'm going to cover this slide, and then I'll turn

it right back over to you, Liz.

So it's important to refer to the person first and

then the disability if the disability is important to

mention. So Robert has Parkinson's, or Mary uses a

wheelchair. Sandra has epilepsy. Kelly is paralyzed.

John is deaf or is a person who is deaf.

It was interesting. I had an opportunity to -- I

was talking about my dad the other day about how he would

come home, and at dinner we would talk about friends of his

and coworkers and have no idea -- as we're talking about

people, usually there's some idea you have in your head of

what they might look like or what have you.

But he had this one friend named Oscar. And he

would talk about Oscar, talk about Oscar, how much he

respected Oscar's work, and he's so detail oriented.

And that my dad just would be like, "Oh, Oscar saved this

project for me today, and he did such a great job."

And he might tell us something funny that Oscar

said or something that they were working on together. And

Oscar was more than a coworker. He was really a friend.

And so one day we're driving down the street --

down the highway, actually, up 75, Highway 75 in Atlanta,

and my dad pulls over. He's like, "Oh, there's a car

broken down. I think I'll go help." So he pulls over.

And my dad gets out of the car, and out comes Oscar.

And Oscar is a small person. He's a little person.

And I was about ten years old at the time, and I was taller

than Oscar at that point. And it's not at all what I

thought Oscar looked like.

And I thought it was amazing of my dad -- and it

taught me a big lesson -- and my dad didn't even think to

tell us, "Oh, well, Oscar, he's African-American, and he is

a small person." I mean, we didn't need to know all those

details.

It was super cool, too, because Oscar had this

adapted car, and that was the first adapted car I had ever

seen. So that was very cool.

So referring to the person first. Very, very

important.

And so, Liz, if you'll go ahead and take it away,

that would be great.

LIZ PERSAUD: Thank you, Carolyn.

We have a couple of comments and questions over on

the public-chat area. And I'll read that.

Carollyn K. says, "We have colleagues who say, 'I'm

LD.' And we have colleagues who say it's fine to say

things like 'the deaf groups' or 'the blind students.' How

does that square with the total nonuse of such terms?"

Carollyn K., I'm going to actually read the next

one and answer that related to mobility. And I'm going to

toss it back to Carolyn to answer the one prior, especially

specifically related to the "I'm LD" part, if that's okay

with you, Carolyn Phillips.

So Cynthia says, "You discourage the use of visual

and hearing impairment. What's the preferred alternative

to 'mobility impairment'?"

Again, you're absolutely right. A lot of people

will say "mobility impairment." Oftentimes I just say

"mobility disability" or "someone who uses a chair" or uses

a cane or walker or whatever the assistive technology

device is.

But it's just pulling away from that word

"impairment" because it really does kind of denote the idea

that I'm unable to do anything, or somebody with a mobility

disability is truly unable to do much at all or that they

need assistance with every single thing there in their

lives.

So hopefully that helps. Again, it's just staying

away from "impairment."

So Carolyn Phillips, I'm going to toss it back to

you to answer Carollyn K.'s question about "I'm LD" or the

deaf groups or the blind students.

CAROLYN PHILLIPS: Okay. Thanks, Liz. And

Carollyn, I also have folks who say to me, "I'm LD," or "I

am blind," or what have you. Or they'll say, "I'm LD."

And so often -- it depends on my mood. Sometimes

I'll say, "And I'm Carolyn."

But the thing is that, once again, that's just a

technicality. I think however the person wants to

identify, you know, that's fine.

Sometimes I'll explain it to them, that, "Are you

LD, or do you have a learning disability?" And it gets to

be this kind of fine point of how do you identify and how

do you see yourself? And that becomes, I guess, a deeper

issue, if you will.

And sure enough, my personal observation, but I'd

love to see a study done about this, is the way that people

use language, how much does that really reflect the way

that they really do see themselves? I think it probably

does make a difference.

I was working with somebody not long ago who told

me, they said, "I'm crazy."

And I said, "Well, you are? What do you mean by

that?"

And they're like, "Oh, no. I'm certifiably crazy.

I am really crazy."

And they did mean, I have mental health issues.

But they have been told their whole life that they're

crazy. And it definitely affected their self-esteem and

the way that they identify.

And I thought it was very interesting. And we had

a conversation about, Well, are you crazy, or are you a

person that has major depression? Are you a person that

has mental health issues? And what does that really mean?

So I think you could go a lot deeper with that.

Per usual, you ask those really good questions.

The next slide, it just sums this up.

Using person first language is crucial. It's

putting the person first before the disability. It

describes who a person is, not what a person has.

So when you're creating brochures, when you're

doing public service announcements, when you're advertising

your programs, when you are out there doing presentations

and talking about the people that you work with -- even

terms like -- and, Carollyn, I misread this at first when

you said the deal groups.

I was in an IEP meeting the other day, and a

teacher told me, "I have to deal with kids that are

retarded all day, and I have to deal with kids that are" --

and she goes, "And I don't even know the right terms."

And I was like, "No, you don't. Maybe it's time to

retire."

And the whole idea of "dealing with," what does

that even mean? I would say that I work with the

disability community. I'm a part of that community, but I

also work with folks with disabilities.

And so there's all kinds of ways that we can say

that really do express how we really feel about the folks

that we are working with and the folks that we are charged

with serving.

LIZ PERSAUD: This is a poem called "See Me" by

Madeleine Alston. And we often share this with the groups

that we're speaking to on this subject matter. To me it's

just very poignant, and it speaks to all the things that

we're talking about today. But I'll read this for

everyone. "See Me" by Madeleine Alston.

"You look, but you don't see me. You see a crutch.

A bald head. A scar. A disease. An object of pity. You

don't see the person. The determination. The fear. The

vitality. The passion for living. The capacity for love.

Open your eyes and look without prejudice. Look beyond my

leg. Look beyond my illness. Look into my world. See the

many pieces, not just one. A complete person. Open your

eyes and see me."

I absolutely think this is a beautiful poem. And

really and truly, I mentioned earlier at the beginning of

the webinar, we're talking about relating to people with

disabilities.

But the thing is is that we're all people. And if

you really read this poem and you really think about the

words, we all want people to see us for who we are. We've

all got some "issue" that we're dealing with every day,

whether it's you're just tired today, you're in a grumpy

mood or something's going on in your life that's just not

vibing on the positive level, if you will.

But we all just want people to really focus on us

as the person, to see us for all the great things that we

have to bring to the table.

So again, "See Me" by Madeleine Alston, a very

beautiful poem that just speaks to everything that we are

really pointing out today.

So we've got a couple of points that were put in

the public chat. And let me actually read some of these

for the group. Oh, a lot of great things. I'm scrolling

up. Okay.

Carollyn K. again asked, "What are your thoughts

about using the abbreviation PWD with colleagues, not the

general public?"

And again, for those of you who don't know, PWD is

person or people with disabilities.

Carollyn, it's kind of one of those acronyms that's

out there. To be honest with you, I find myself, whenever

I'll see the acronym, if I'm creating some paperwork, if

we're doing a training, or if we're just creating some

documents to share with groups or committees that we're on,

I often spell it out just because it's kind of a personal

thing for me.

But again, there are so many acronyms in the

disability community that it's kind of one of those things,

I guess if you're taking quick notes, it's up to personal

preference. But that's just me, Liz, kind of giving my two

cents there with that.

And again, we just always want to be mindful of

spelling out those acronyms and being able for folks to

understand that fully and really what that means.

Let's see. We've got Gigi Taylor. Hello, Gigi.

Gigi Taylor is part of the Tools For Life advisory council.

She says, "Is this helpful, the International

Classification of Functioning Disability and Health, ICF?"

And I see you've got a lot of great things here of

what the ICF defines disability as. That's functioning in

multiple life areas. So I can definitely include this in a

PowerPoint. We'll actually put this PowerPoint on the

website. And I can create a slide with these definitions

from the International Classification of Functioning

Disability and Health.

And also Kimberly, again, is transcribing this.

And we can get this information up there. We'll also

include this in our knowledge base as well too.

But it's got some great information including

things like "Disability is seen as a result of an

interaction between a person with a health condition and

the person's contextual factors, environmental factors, and

personal factors." So some really great information.

Thank you, Gigi, for including that.

And thank you, Cheryl, for saying, "Nice poem." We

really appreciate that.

I'm actually going to be -- I think Carolyn

Phillips said that her computer is giving her some trouble.

So let me just release the mic for one second.

Carolyn, are you able to connect with us, or are

you gone?

CAROLYN PHILLIPS: Hi. I'm back as Martha. So

what I'll need is, Liz, if you'll just go ahead and flip

the slides.

Every now and again here at the Department of Labor

they shut down our computers and do some updates. So very

untimely, but they're doing that right now with mine. So

anyway, so I've jumped over here to Martha.

So the next slide here -- and I like this, that

it's really about emphasizing abilities, not limitations.

And so when writing about folks with disabilities, it's

important to show them as active participants in society.

One of the things when we first started the program

ReBoot, we were very, very -- took it to heart that we

needed to include -- and we actually practice what we

preach where we hired folks with disabilities to be a part

of that. Obviously I was a part of that program. And very

successful reuse program.

And we talked about "Nothing about us without us,"

that this program was operated by folks with disabilities,

and it is for people with disabilities.

And that's not to say people without disabilities

couldn't participate. Obviously we want to work side by

side. But I think it was that whole doing-it-for-ourselves

type of thing. So very, very important to look at that.

And of the folks with disabilities between the ages

of 21 and 64 in this study, 49 percent were actively

employed, which is great. So it's important that we

recognize those things and see, you know, how that can

really help raise awareness and get people thinking about

people with disabilities not as people to pity but also

people who have a lot to contribute.

So I would encourage everyone -- and I say it all

the time, that we need to practice what we preach. It's

very important that we do hire folks with disabilities, and

that, as we operate programs for people with disabilities,

that we actually -- it's that whole thing of "Nothing about

us without us."

So, Liz, I'm going to turn this back over to you

for just a couple more minutes. And then I'll jump right

back on with you.

LIZ PERSAUD: Thank you, Carolyn.

I wanted to let you know that -- I know you're on

Martha's computer, but it's not allowing me to flip the

slides. So I'm going to try refreshing and see what that

does.

Does anyone have any questions or any comments that

they want to add while we're trying to figure this out?

CAROLYN PHILLIPS: We would also love to hear from

y'all how you have incorporated person first language, or

have you noticed differences whenever you use that language

as opposed to language that may not be as empowering?

And I know many of you are operating programs as

I'm looking through the list. So if you could share with

us some of your experiences, that would be helpful too.

And it looks like Carollyn Kowalski, "Ain't

technology grand?"

"Yes. I hear ya." It definitely -- "It is when it

works. That's for darn sure."

So I think that it's exciting to see how folks have

been able to evolve in their programs and seeing how

language has changed.

And people often ask me the question of "Do you

think that our language is going to get to a point where

'person with disability' is going to be wrong or bad or

what have you?"

And, yeah, it may. As we said, language is always

evolving. But the thing is is that there's a connection

between language and -- there's a huge connection between

the language we use and our actions. And then our actions,

obviously -- there's a connection between our actions and

attitudes.

And so there are a couple of things we are going to

talk to you about etiquette, not so much because you don't

do these things, but more because we want you to -- and I

think that a lot of times we don't do this where we embrace

the role of leader.

Just because we work in the disability community, a

lot of people do watch what we do, and they see us as

leaders, and they see us as the folks that they should

copy.

And so it's very important that you show the best

use of language, that you show etiquette, all of those

things.

So as we were talking here about don't use

euphemisms to describe a disability. It's important not to

do that. And so like things -- I've even heard things like

"Somebody's handy capable." That one in particular -- that

drives me a little bit crazy, somebody's handy capable,

because it's making light of something or making something

kind of cutesy that really doesn't need to be cutesy.

And so mental problem, "they're different,"

"special." I've heard that so many times throughout my

life that, "Oh, I'm special." And I'm like, Am I special,

or do I just have a learning disability?

You know, and then "physically inconvenienced."

And I've got to tell you, I think a lot of folks would

argue that it's much more than an inconvenience. And so we

don't want to necessarily approach it from that standpoint.

And we can move to the next slide. And good job,

team, in moving us along.

There's a picture up here that's showing obviously

a lot of different folks. And the thing is it's

reiterating the point that not all folks with

disabilities -- it's not all visible.

Often people are surprised whenever I tell them

that I have a disability. And I know that, knowing a lot

of folks in this picture, that there are all kinds of folks

in here that -- we have various abilities and disabilities.

And so we really need to appreciate the

accomplishments of all folks with disabilities. But it's

not about being heroic or super human.

Kerry Morgan is in this picture. And Kerry Morgan,

somebody who I definitely respect and is good friends with

several of the folks here on our staff. And she's a

paralympic athlete, really accomplished, working on her

doctorate. And, yeah, I would say she's super human.

And I look over there, and I see Liz Persaud, who

has done all kinds of amazing things with her life,

literally amazing things, has won a lot of awards and

really changed the way that folks view life in general.

And so definitely super human and heroic.

But it doesn't mean that, just because somebody

uses a wheelchair, that they are. So, once again, just

thinking about this and taking it into consideration.

Liz, anything you would like to add to this?

LIZ PERSAUD: Thank you, Carolyn, for saying those

kind words. I really appreciate that.

You know, and I do. I do work really hard. The

last paragraph here says "Doing so raises the expectation

that all people with disabilities should be high

achievers."

I tell you what -- and I'll be honest with everyone

out there -- it does put a lot of pressure when people say,

"Oh, it's so great that Liz gets out today," or, "Look at

all the work that Liz has done, and she just does so much,

and God bless her for just sitting in that chair and just

working with the Pass It On Center."

But the thing is that I love my job, and I would

more than likely be doing it whether I'm in a chair or not

in a chair.

But oftentimes it does -- and I've spoken to

people, friends and other colleagues, about the pressure

that it can put on you because it does feel that you have

to always really put that best -- we're always putting our

best foot forward, but it's the pressure of kind of being

held to that standard of can I have a bad day, or can I

make a mistake, and things like that.

And the things is I do work -- we all work really

hard to do great things and to really make a name for

ourselves in the community. But the thing is is that name

for me is Liz Persaud. It's not, "Oh, that girl in the

wheelchair that's with the Pass It On Center," or, "Liz

Persaud, the person who was able to join the webinar today

despite having all sorts of issues with transportation and

doing this and doing that."

That's not what it's about. It's just seeing me

and other people with disabilities, again, for their

abilities and the work that they are doing every day that's

just -- the everyday work in this community.

CAROLYN PHILLIPS: I was just going to add and as

we move on to the next little piece here. Liz and I were

at a conference, and there was a person who's very well

respected, very well known, who was talking up there at the

conference.

And she made this statement about how, "Oh, if you

want somebody who's never late to work, if you want

somebody who will never be sick, who will never call in

sick, who will always be loyal, who will be with you every

day, every step of the way, then you need to hire a person

with a disability."

And I looked at Liz, and we were both laughing.

And I said, "Good Lord. I think we ought to be fired, and

we'll get some of those people," because it's just not

realistic. And it was unfair to say that that's who we are

as people. So it was just kind of a funny aside.

So making the connection here. There's a huge

connection between our language and our attitudes. And

then of course our language and attitudes lead to our

actions.

If you use the term "handicap," you may or may not

view people with disabilities as less than. Of course

that's a term that's been around forever.

But if you think of people as crazy, you're sure

not going to hire people that you think are crazy. But if

you think -- if you get to know that person and you

realize, oh, it's a person just like everybody else,

manifest differently, they might have mental health issues,

well, okay, then you might give them a chance. You might

hire them. Or you might welcome them into your family or

what have you. So very important.

And it leads directly to our work culture and our

environment. I think there's a lot of fear whenever people

don't understand that folks may have mental health issues

or what have you. So just pay attention to that.

And we'll go on to the next slide with this closing

thought, that a change in language and attitude can really

change everything.

Etiquette and attitudes. Once again, I think that

a lot of times people pay attention to even the slightest

of gestures. Shaking somebody's hand, absolutely welcomed

for most folks with disabilities. And it's important to do

that if you are a person who shakes hands.

If you are not a person who shakes hands, then

obviously don't. You don't have to go out of your way to

shake hands or shake somebody's artificial limb or what

have you.

And it's very acceptable to say to somebody who's

blind, "I'm extending my hand. I shake hands." I say

stuff like that often.

It's important to be consistent. So however you

would typically interact, then go ahead and interact that

way. Very, very important.

And we'll move on to the next slide.

Another piece that we want to think about is

looking directly at the individual. And once again, I

can't even tell you how many times I have to tell people

and educate folks about this.

And once again, we know that a lot of y'all feel

the same way that we do. But it's important that you help

us, that we all work together to raise awareness about

this.

But it's this concept of looking at the individual

directly that you're addressing. There are many times that

I'll be out to dinner with Liz, and the person will come

up, and they'll say, "Hey, what does she want to eat?"

And I'm like, "Well, she's going to have to read

the menu to me first before I can even tell you what I

want."

So it's kind of this crazy thing where folks do.

Just because I'm walking around doesn't mean that I can

read the menu. Or just because I can drive doesn't mean

that I can read the GPS or the directions.

So it's important to look directly at the

individual. If there's an interpreter there, look at the

individual that you're talking with, not the interpreter.

And it's a-okay to say things like "See you later"

to somebody who's blind or, "Hey, do you want to go for a

walk?" Liz and I go for walks all the time. As a matter

of fact, it's one of my favorite things to do.

And so it's just one of those things that I think

that sometimes we do get a little overboard about language.

And we don't want any of this to be a barrier to you

actually talking with folks.

I was in an IEP meeting not long ago, and it was

very frustrating because everybody kept talking about the

individual that's in the IEP meeting instead of looking at

the individual that the whole IEP meeting was about who was

present.

And I kept addressing this young man. And he

finally said in the middle of the meeting, "You know

Carolyn is the only one who looks at me and sees me as a

person." And I was like, Oh, goodness. So I think a lot

of people would think he wasn't aware of that. But sure

enough, he definitely was.

So we can move on to the next slide.

So disability. It really is a matter of

perception, as Martina Navratilova said. If you can do

just one thing well, you're needed by someone. And that's

for sure.

I see that manifest again and again. And I do

believe that whatever our different beliefs are on how we

got here, that we are all blessed with gifts. And so

whatever that gift is, do that one thing, do it really

well, and contribute. Everyone has something to

contribute.

So be patient. Take time to communicate. It's

incredibly frustrating. My daughter uses an alternative

augmentative communication device. And people are hardly

ever patient with her. They just rush ahead, and they're

always guessing at what she's going to say. And it's very

frustrating.

She's incredibly patient to put up with that. And

I'm often trying to educate people just to take time.

Don't finish people's sentences. And don't assume that you

know what somebody's going to ask or what you're talking

about. Always ask when in doubt.

And obviously be natural in your language. I know

that all of us really and truly want to talk to each other

with respect and dignity. And that needs to be portrayed

in our PSAs and in our presentations and in the way that we

pass out information about our programs as we're developing

our programs and all of that.

We can move on to the next slide.

And, Liz, if you want to take the next slide, that

would be great.

LIZ PERSAUD: Thank you, Carolyn. Great job.

So begin with making the connection. These last

two slides really tie in the kind of -- us as service

providers as having our AT reuse programs across the

country and as we're representing and as we're serving

people with disabilities.

The thing here is it says "If employers believe

adults with disAbilities have or could learn valuable job

skills, we wouldn't have an estimated 70 percent

unemployment rate of people with disAbilities." 70 percent

unemployment rate. It's absolutely unacceptable.

And we're constantly just doing work to really

change that number every day. But we've got to be the ones

that are listening to people, that are believing that

everyone can work, and it's all about accommodations and

using assistive technology and using reuse pieces of

assistive technology as well too.

And "If merchants saw people with disAbilities as

customers with money to spend, we wouldn't have so many

inaccessible stores, theaters, restrooms, and more." And

that's very true.

Often when Carolyn and I do this talk -- I know

it's a belief that I absolutely love about Carolyn and many

of my friends across the board too.

But if Carolyn -- even though she doesn't use a

mobility device to navigate, but if she comes across a

restaurant or another facility that has steps and isn't

fully accessible, she won't pay money to that merchant, to

that place of business because what does that say?

That says that we're putting that place in

business, and they're not accepting of everyone in our

society. And that's really something that we've got to

move away from.

How can we be supporting these businesses and --

whether it be restaurants or theaters or stores or anything

like that, that doesn't accept everyone in our community

together?

And if the service system, if we as organizations

out there and agencies working with people with

disabilities, if we started identifying people with

disabilities as customers instead of clients or

consumers -- that word "consumer" drives me crazy at times

because what I feel like people are saying about me is that

I'm consuming everything around me.

It's not my meal. It's not my dinner. I'm not

chomping away at the hooves of everything. But really is

that what it means, is that I'm just eating up every single

thing that I need out there as opposed to recipients.

And perhaps it would begin to meet a person's real

needs, like inclusion and friendships, instead of trying to

remediate problems.

And that's what it is. People with disabilities

don't need to be fixed. People with disabilities aren't

broken. But people with disabilities just want to be seen

as real people living as they are every day in our

community, in our society.

And we can move on to the next slide.

And the thing is is that people with disabilities,

it's the whole thing that Carolyn mentioned earlier about

learned helplessness.

We had somebody mention earlier about people

referring to themselves -- I think it was Cheryl that

mentioned it earlier. People with disabilities referring

to themselves as handicapped.

And it's because of that learned language that they

grew up with or they heard people referred to them as. And

what does that really mean?

So "If people with disabilities and family members

saw themselves as a first-class citizen who can and should

be fully included in all areas of society, they might focus

on what's really important: Living a real life in a real

world, enjoying ordinary opportunities and experiences, and

dreaming big dreams (like people without disabilities),

instead of living in a special life in a disability world

where low expectations, isolation, segregation, poverty and

hopelessness are the norm."

And that's the thing that we're just trying to get

across. It's just really focusing on that language,

focusing more on abilities as opposed to disabilities. And

getting people with disabilities -- encouraging them to see

themselves as people who can, you know, be in our society

and who can give back to society.

I was at a function for one of the -- a big gala

here in Atlanta. And I remember sitting there, and there

were all these business folks raising all this money for

this particular organization.

And somebody on stage said, "We just want all these

folks to be tax-paying citizens." And I just couldn't

believe what I was hearing because it made me feel like

they were seeing folks with disabilities in the room who

were there contributing, who were there giving their

hard-earned money to this particular charity, if you will,

as not tax-paying citizens.

And I pay my taxes. Just finished filing taxes a

couple of weeks ago. And working hard to do so. So that's

the thing is just seeing individuals as they are.

And we can move on to the next slide.

And, Carolyn Phillips, do you have anything that

you want to add to that?

CAROLYN PHILLIPS: Yes. Actually, as we're

wrapping up, I just wanted to say that we are definitely

here to help. And if you do need our help as you move

forward, if you have any questions, we definitely want to

be there for you.

And we've looked at lots of different materials

that people have produced. We've looked at websites that

people have put together just to help out. Not just

looking at the language so much, but it's also how we

convey the message because it is powerful. And it's always

good to get other folks' perspective on it.

People feel better, obviously, about us and the

service we provide when we treat everyone with dignity and

respect. That's what all of us want.

We'll move on to the next couple of slides, and

we'll wrap up.

And it looked like -- yes. Kerry Morgan is a good

friend -- and I'm glad that you said that -- good friend of

yours. And I totally agree that she would be mortified to

hear folks refer to her as a hero or super human.

And I think that that's obviously important for all

of us. Just like I don't want somebody telling people that

I suffer from dyslexia or what have you.

So William James said this very, very well, that

"The greatest discovery of my generation is that human

beings can alter their lives by altering the attitudes of

their mind."

I think of that often, that it really is a gift

that we have that we can change, and we can grow, and we

can develop, and we can help other folks change and grow

and develop, and that we really can alter our lives by

altering the attitudes of our minds.

So the next slides, please.

And this is just one other piece here that we have

discussed a bit. But it's true, and it's worth repeating.

It's that disability really is often a consequence of the

environment.

And bearing that in mind, it's important for us to

break down those barriers, whether they be stairs when we

really need a ramp or whether it be something that's paper

that needs to be in electronic format, or whether it's a

word that needs to be changed to something more friendly,

or whether it's an attitude that we need to really look at.

So disability is really a consequence of the environment.

And, Gigi, I sure do appreciate you sharing with us

more definitions. That's awesome, and we'll definitely

incorporate more of that.

Next slide, please.

So if y'all have any questions, as we said, we're

here to help. That's -- I've already gotten some messages

from behind the scenes saying that this has been helpful.

We hope it has been.

And does anyone have any questions that they'd like

to ask?

And we'll move on to the next slide which should

have information about our survey.

And I'll pass this over to Liz.

And thank you, Ann. I appreciate that. And thank

you all very much for hanging in there with us.

And we're very excited about this webinar in

particular because I think it is one of those foundation

webinars and one of those foundation conversations that we

need to have.

And so I appreciate your openness and willingness

to also help us spread the news and the message about how

we do need to change and be more thoughtful about our

language even as it evolves.

So, Liz, what would you like to add to this as we

close?

LIZ PERSAUD: Thank you, Carolyn. I really

appreciate you doing this with me. And I love

co-presenting this topic with you, even if it is from a few

miles away.

Again, everyone, we're here for you. Please let us

know if you have any questions.

Please fill out our survey. Again, that really

helps us to offer these credits and to continue putting

these webinars on for you. I put the link in the

public-chat area. So again, it will take you less than

five minutes to do that.

We wanted to say a special thanks to Life Span

Institute, Kathie Snow, and Paraquad, Inc. We were able to

use some of their information as we were kind of putting

our thoughts together about disability is natural and

people first and language.

Next slide, please.

And again, just always get in touch with us if you

have any questions at all. Carolyn and my -- our e-mail

address is there. You can also e-mail

info@passitoncenter.org. We're definitely here for you.

Again, we appreciate your time. This has been a

wonderful webinar. We really appreciate everyone putting

in your comments, asking questions, and really being in

sync with us today and just giving such great, positive

feedback.

Again, this webinar will be archived. So give us

about three to four weeks, and we'll get that up on the

Pass It On Center website.

In the meantime, we'll go ahead and post this

PowerPoint so you'll be able to access that.

We also wanted to let you know that we'll be

turning this webinar into a training package and putting

that on the Pass It On Center knowledge base. So if you

would like to use this as a shell, as a template, a guide,

if you will, to recreate this presentation, you'll be able

to access that information on the Pass It On Center webinar

page. And also feel free just to get in touch with us if

you have any questions.

So thanks everyone again. And we'll see you next

month for another great webinar. Take care.

CAROLYN PHILLIPS: Excellent. And, Liz, once

again, as always, great job.

And, Martha, thank you for letting me jump in. You

can be my avatar. Thank you. Or I'm your avatar; however

that works. But thank you for letting me assume your

identity for the rest of the webinar.

And thank you all for the thumbs-up.

Once again, we're here to help. So be in touch.

And we look forward to working with you even more. Take

care.