BENDER
CONSULTING SERVICES, INC.
"DISABILITY
MATTERS"
WWW.VOICEAMERICA.COM
2:00 PM ET
8/31/04
HOST: JOYCE BENDER
GUEST: Marca
Bristo
Captioning Provided By:
Caption First, Inc.
P.O. Box 1924
Lombard, IL 60148
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***
This text is being provided
in a rough draft format. Communication
Access Realtime Translation (CART) is provided in
order to facilitate communication accessibility and may not be a totally
verbatim record of the proceedings.
***
>> Welcome to "Disability
Matters" with your host,
>> JOYCE BENDER: And
welcome to our show! And you know what
I'm going to ask you as I've been asking you on every show: Are you registered to vote? Are you registered to vote? If you aren't, you need to be
registered. You need to be registered.
As
I bet our guest is going to agree with me, who I'll be introducing in a
few minutes, but I want to say first a special thank you to all of our
listeners who have sent me so many e‑mails about this show from around
the world. I really so much appreciate
hearing from all of you. And especially in reference to our guest today. And I have to tell you, I didn't even tell
this to Marca when we were talking before, but I
remember when I first met her many, many years ago. I was so honored to meet her I could barely
say who I was when I first talked to her.
I was just ‑‑ it was such an honor. And it is still such an honor for me today to
have a legend in the disability community, a part of our history, and listen to
me, people throughout the world, a person who is and has made a difference in
all of our lives, Ms. Marca Bristo. Marca, welcome to the show.
>> MARCA BRISTO: Thank
you very much, Joyce, and thank you for that kind introduction.
>> JOYCE BENDER: Well,
it's a fact. And we all feel that
way. But Marca,
for those few ‑‑ and I mean few, since we have very loyal
listeners to this show ‑‑ could you tell the few who do not
know how you first became involved as an advocate for people with disabilities
just a little bit about your history? So
they'll know how it got started?
>> MARCA BRISTO: Certainly. That's an easy question. I broke my neck.
(Laughter)
>> MARCA BRISTO: That
will do it. Actually, I'm a registered
nurse, and in 1977 I broke my neck in a diving accident and it really changed
my world and my perspective. I really
wasn't quite ready for the way in which the world interacted with people with
disabilities, and it took me quite a while to piece it all back together that
my old self had changed and my new self was still becoming, and quite honestly
it was the community of people with disabilities that helped me make the shift
and essentially unify the past with the future.
I went to a conference in
California where I had a firsthand opportunity to see the advances of the very
early phases of the independent living movement out there, and it really
changed my life. Until that time, I
looked at the world through the lens of the medical model of disability. That model being the one that sees the
problem in our body rather than the problem in the world around us, and I had
kind of bought that. And that meeting
that I went to, which enabled me to see people moving in their community, curb
cuts everywhere, lifts on busses, the very early phases of their advocacy made
me realize that I had been looking at the world through the wrong lens, and
when I saw it that way, I realized that a lot of the barriers that made me more
dependent than I wanted to be could be changed, and that I had a part to play
in that. And that experience was very,
very empowering. And for listeners who aren't involved at all in disability‑related
things, it really ‑‑ the work that we've done has really been
done person by person, by regular people who have that same metamorphosis and
could make a difference and if you're out there and you don't think you can,
you're wrong. You need to get involved.
>> JOYCE BENDER: And
that is so true. And you know, the thing
is, look just from you also attending those events, what an impact that had on
you from getting involved. Because I'm
sure being involved with seeing those independent living centers had a
tremendous impact on you and on your life.
>> MARCA BRISTO:
Actually, Joyce, when I went out to this conference, I didn't see the
independent living center. I was really
mostly seeing the result of their work.
I went out to a conference on sexuality and disability, and what was
impressive was the degree to which disabled people were involved in the
conference, and then the impact that the independent living community,
particularly Ed Roberts and his friends, have had on that neighborhood.
>> JOYCE BENDER: Oh,
yes.
>> MARCA BRISTO: It
wasn't until months later, when I came back to Chicago and got involved in the
organizing that the Rehabilitation Institute of Chicago was doing, in what
became Chicago's first independent living center, Access Living that I learned
about Ed Roberts and the independent living movement.
>> JOYCE BENDER: Well,
you have done so much for so many, but you know what? You've got to get involved. And you know what's amazing? And, you know, it was really the
implementation, the work of all these people, the result of what they had done
that was the thing that had such an impact on you.
>> MARCA BRISTO: That's
right.
>> JOYCE BENDER: You,
who had become such a great part of our history in so many ways. And Marca, I know
that presently you are the President and CEO of Access Living. Now, for those who are not familiar with
that, could you explain to everyone what Access Living is?
>> MARCA BRISTO:
Sure. We're a community‑based
center for independent living. We're
nonresidential. We're one of probably
400 similar organizations all around the United States.
For example, in my state,
although we are the first organization of our type in Illinois, there are now
24 similar organizations, and we're all unified in philosophy. The particular strategies that we use are a
little bit different, but we are consumer‑governed organizations that
provide direct service as well as advocacy from a self‑help perspective,
with the goal of educating the community and the people with disabilities to
break down the barriers that keep us out and empower us to live full lives.
To that end, we have quite a
few significant accomplishments over the years, both at the systems level ‑‑
things like working towards getting lifts on busses in the city of Chicago or
making the public school system accessible, working towards the first ‑‑
one of the first message relay systems in the United States,
et cetera. One other thing I'd just
like to mention, centers for independent living are also cross‑disability,
meaning people with all different disabilities working collaboratively to help
one another and to change the world in which we live.
My center was one of the
first 10 in the United States, and we now have a national association called
the National Council on Independent Living, and collaboratively with many other
great organizations we provided the infrastructure that helped pass the
Americans with Disabilities Act and other very significant major public policy
initiatives in the U.S. and now abroad.
>> JOYCE BENDER: And Marca, yes, which is wonderful. What is the website for your center?
>> MARCA BRISTO:
www.AccessLiving.org.
>> JOYCE BENDER: And
that's www.AccessLiving.org.
And what ‑‑
in your own community, what today are the main services that you provide to
people when it comes to people trying to get out of, for example, nursing
homes? Do you work with that
specifically?
>> MARCA BRISTO: Yes,
absolutely. We have actually one of the
pilot programs in the state of Illinois.
And let me back up and answer your question a different way.
The main services we provide
are linked to the main needs that we see in our community. As communicated to us by people with
disabilities.
So we provide services to
about 2500 individuals per year, and our goal as we're working with those
people is to look for systems problems, where our intervention could affect a
lot of people.
So, for example, in the area
of helping people get out of nursing homes, we help by both finding them,
teaching them their rights, informing them of all the resources out there. We also have a program that will help them
get their first month's rent, their electricity and telephone and dishes and housewares, because in you're a nursing home, you don't get
to keep very much of your Social Security check, and trying to get out is an
enormous obstacle.
We have been working, along
with many other organizations, to implement a Supreme Court decision in
Olmstead ‑‑
>> JOYCE BENDER: Uh‑huh.
>> MARCA BRISTO: ‑‑
which found that unnecessarily segregating people with disabilities into
nursing homes or other institutions is a form of discrimination. And to that end, our work is also focused on
advocacy, including legal advocacy. We
do bring litigation from time to time when we feel that it's necessary to move
a system forward.
Other types of services, once
again, responding to our constituent needs, include a youth and education team,
the focus of which is to break down the barriers in the public school system
and shift the policy towards greater inclusion, independence, and empowerment
within the school system, as well as working with young people to help develop
the next generation of leaders through leadership development and peer support.
We also have a civil rights
team that helps to enforce the different civil rights laws and teach people
about their rights under those laws, and to advise others what their
obligations are under those laws.
Housing is the single biggest
issue in Chicago that people turn to us for, and there, too, we're working both
to teach people what ‑‑ what housing options there are, how to
get it, as well as the systems changes that need to occur. We've just worked with our city to rewrite
the city's building code and the zoning ordinance to promote the development of
more low‑income accessible affordable housing, for example.
And finally, we have a team
that handles the coordination of all of our consumer services, information and
referral, disability awareness, peer support, et cetera. And all of this happens in a broad context of
public awareness raising, and other things that would
help get the word out.
>> JOYCE BENDER: Well, Marca, I feel you have done so much for us. Marca Bristo. Also was the
Chair of the National Council on Disability, a post to which President Clinton
appointed her in 1993, and spoke constantly throughout all of the United States
about issues to help Americans with disabilities, but you also are a voice
internationally. Marca
you were telling me today ‑‑ and I am so ashamed that I did
not realize what you were doing with the U.N. on that ad hoc committee
working with people with disabilities throughout the world and I'm going to
guess that many of our listeners are not familiar with that either. Would you mind taking a moment, and
explaining that to everyone?
>> MARCA BRISTO:
Yes. First off, I'm not surprised that
many of our listeners are not aware of this.
We in America tend not to see the significance of a lot of the United Nations
activities, whereas in my dealings with disability people from all over the
world, in their countries the U.N. treaties, declarations, conventions, and
other vehicles really inspire social change, and often give them the tool they
need to move change forward in their own country.
Over the last many
years ‑‑ including back when I was the chair of the National
Council ‑‑ there has been a growing network of activists from
all around the world in fact, led by our friends like Justin Dart and Ed
Roberts and other people who have preceded us.
They have been working
towards the development of a convention or a treaty on the rights of people
with disabilities.
>> JOYCE BENDER: Well,
with that note, we're going to take a break, and we'll be right back to talk to
a champion, a part of our history for Americans with disabilities and as you
can see now people throughout the world, Ms. Marca
Bristo. This
is
(Music)
>> At Bender Consulting
Services, Incorporated, our mission is to provide superior technology
consulting services to our customers while creating career opportunities,
independence, and freedom for people with disabilities. While the demand for skilled technology
professionals is reaching an all‑time high, over 13 million disabled
Americans ‑‑ many of them experts in technology ‑‑
remain unemployed. Since 1995, Bender
Consulting Services, Incorporated has worked to solve these critical social and
business issues by providing employers with reliable talent and giving
individuals with disabilities the chance to display their talents and enhance
their lives through solid careers. If
you're a person with a disability seeking employment, send us your resume via e‑mail
to resume@benderconsult.com. For more
information about our services, visit www.benderconsult.com in the U.S. and
www.benderofcanada.com in Canada. Bender Consulting Services, Incorporated, providing and creating
employment opportunities, freedom, and independence for people with
disabilities.
www.benderconsult.com.
>> Welcome back to
"Disability Matters" with
>> JOYCE BENDER: And
welcome back to the show, and we are with Ms. Marca
Bristo, who is a part of our history and continues to
be for people with disabilities. And Marca, before we went to break, you were talking about the
convention.
>> MARCA BRISTO:
Yes. It is so exciting. In fact, as we speak, I'm sitting in the
public information office within the United Nations building borrowing
their telephone to do this call. The
United Nations has gathered hundreds of individuals here representing over
a hundred nations who have been working for the past two years on deliberations
that will result in an international treaty or convention on the rights of
people with disabilities.
It is interesting to note
that all of the countries of the world are working hard at this, with the
notable exception of the United States.
Our country has determined that because we have this law, the ADA, in
the U.S., that this is not a necessary instrument, and the disability community
in the U.S. was not happy with this stance and have continued to articulate our
voice in spite of that, the world community is moving forward at record pace
here towards deliberations on this. And
what it means to people all over the world is very, very significant. If and when adopted, those countries that
ratify will commit to beginning a process to changing laws that discriminate
against people with disabilities, creating new laws and vehicles that will
prohibit discrimination, which is why we've had a hard time understanding why
our government has not been out not only supporting it, but helping with it.
We have, after all, in the
Americans with Disabilities Act, one of the greatest exports of American
democracy, and it ‑‑ when I was the chair of the National
Council On Disability, there was not a week that didn't that went by where we
did not have a country delegation coming in wanting to learn about the
ADA. That was true with the EEOC, the
Department of Justice, the Department of
Transportation. People really saw this
as important social change, and one by one, countries around the world are
adopting their own types of nondiscrimination laws and this effort is to codify
it and move the world community in the direction that we envisioned in the
world disability rights committee ‑‑ community envisioned when
we passed the ADA.
>> JOYCE BENDER: Well,
you know, that's not good, Marca. That's not good at all. Because we ‑‑ we want to be
a leader and we need to be involved. And
my question to you is: If someone is
listening to this show right now who wants to send an e‑mail to someone
about this, what could they do? What
could they do to express their view?
>> MARCA BRISTO: Well,
at this point in the process, I think we are always encouraged to send our view
to the people at the top. In this case,
it certainly would be Colin Powell and President Bush, I think. But I do want to say that at this point,
the ‑‑ in the process, the community, the world community, has
moved forward very well without the participation of the United States, and I'm
very, very pleased to see the progress that they've been making.
>> JOYCE BENDER:
Yes. As I often tell people, they forget
that I ‑‑ you know, since I am a person with epilepsy and a
hearing loss, I can say that no matter where you live in the world, it's still
an issue when you have epilepsy or a hearing loss, regardless of the
disability. And you know, we are all
brothers and sisters and we have to help one another, because when you help
people in other countries or help others, you know, you're really helping this
country. So I ‑‑ I
applaud you for that effort, Marca, and ‑‑
you know, and I hope that we see continual progress as that does move forward.
Now, we did have many, many,
many, many e‑mails sent to us, as questions for Marca,
which I want to tell you I cannot ask her all these questions or she won't get
to talk and answer the questions I want to ask her, but you can feel free to
continue sending your questions to me at the radio show and I can get that
information to her by sending information to
disabilitymatters@benderconsult.com. But
here's a question for you, Marca, right from
Pittsburgh, Pennsylvania.
Marca, I
met great leaders like you and Judy Heumann in a
national youth leadership conference in 1997 sponsored by the National Council
on Disability. Meeting you and others
had a tremendous impact on me, and my understanding, my role as an
advocate. I also know that you work with
some great leaders at Access Living in Chicago, with Sarah Triano
and Amy, who is originally from here in Pittsburgh. I enjoy keeping up with what Access Living is
doing. I commend you for all your hard
work. Now, here is my question. I have heard many youth with disabilities
mention that they do not necessarily want to be involved with disability
advocacy. They feel that being
associated with others with disabilities only enforces the stereotype that
people with disabilities cannot socially or professionally integrate with
people without disabilities. I personally
would like to motivate more young people to become advocates and to have a
deeper understanding of the issues out there.
What would your comments be to a young person with a disability who
feels uncomfortable with getting involved for these reasons?
>> MARCA BRISTO: Well,
first off, I relate to it because that's how I felt when I first became
disabled. And what it was, was the shame
and the embarrassment that society has put upon us to somehow feel less
than ‑‑ or not good about ourselves, as people with
disabilities.
And to be honest, until I
really needed other people with disabilities for the strength and the hope and
the vision, it was a little out of reach for me. I received it, ultimately, by seeing the
power that the disability community has and can give. By all means, this does not mean that
everyone needs to become professional advocates, but you ‑‑ I
would also say there is a responsibility that we have to our children and our
children's children when we see injustice in our own life to both deal with it,
rather than tolerate it, and look for ways to make it open up doors for other
people.
And finally, I would say it's fun. It gives
you something. This is not to say that
we advocate people segregating themselves in the workplace, only working in
disability‑related ‑‑ of course not. Some of the best advocates that we work with
are people who have jobs not in the disability community, but who volunteer
themselves and get involved and open doors that are very beneficial. There's many different ways to advocate. It's ‑‑ and there's ‑‑
this is so important. Not everybody is
comfortable with street organizing. Not
everybody is comfortable with writing letters to their legislator or going to
see a legislator, but there are so many tasks that need to be done, and I would
be hard pressed to find a person that couldn't make a contribution.
We need you.
>> JOYCE BENDER: Yes,
we do. We need as many people as we can
get, because Marca, that is a question that has been
brought up at many of the meetings I have been to in Washington, D.C. and other
areas and what it's about is ‑‑ and I've talked ‑‑
on our show, when we had Bobby Silverstein as a guest and Judy Heumann and other people.
We've talked about this. But, you
know, many people feel that we don't have enough youth with this same advocacy,
this same passion, coming forward as we did, of course, prior to the ADA being
signed, and that, you know, people are concerned about where is our future with
the advocates. What is your opinion of
that?
>> MARCA BRISTO: Well, it's
not a simple answer. As the previous
guest said in their communication, we organized the first youth leadership
summit, national youth leadership summit when I was in Washington. That was really a labor of love on the part
of the council members and myself. We had lost so many of our leaders
consecutively over a five‑year period ‑‑ Ed Roberts,
Evan Kemp, Ron Mace, Paul Hearne, Elizabeth Boggs, just lots of people who laid
the groundwork for many of the rights we now have, and actually it was after Evan
Kemp passed that it really hit me that if we don't do something to pass this on
to the next generation, it could really just be a blip of history.
We know that disability isn't
frequently passed on from generation to generation. It is sometimes, but certainly not a majority
of the time. And so we don't have that
vehicle for inter‑generational transfer like women do, like persons of
color do, and therefore, we have to look for ways to structure it and create
it.
And it's all the more
important because we don't have places for people to feel that pride.
>> JOYCE BENDER: Well,
that is something that we're going to talk about a little bit more, as soon as
I come back from this break with our guest, our host, our champion, Ms. Marca Bristo. We'll be right back after this break.
(Music)
>> At Bender Consulting
Services, Incorporated, our mission is to provide superior technology
consulting services to our customers while creating career opportunities,
independence, and freedom for people with disabilities. While the demand for skilled technology
professionals is reaching an all‑time high, over 13 million disabled
Americans ‑‑ many of them experts in technology ‑‑
remain unemployed. Since 1995, Bender
Consulting Services, Incorporated, has worked to solve these critical social
and business issues by providing employers with reliable talent and giving
individuals with disabilities the chance to display their talents and enhance
their lives through solid careers. If you're
a person with a disability seeking employment, send us your resume via e‑mail
to resume@benderconsult.com. For more
information about our services, visit www.benderconsult.com in the U.S. and
www.benderofcanada.com in Canada. Bender Consulting Services, Incorporated, providing and creating
employment opportunities, freedom, and independence for people with
disabilities. www.benderconsult.com.
>> If you have a
question or comment, please call toll free at 1‑888‑335‑5204. Now, please welcome back the host of
"Disability Matters," here's
>> JOYCE BENDER: And
welcome back to the show, and I'll tell you what, if you're listening to this
show right now and you aren't getting fired up to do something about quality of
life for people with disabilities, there is something wrong with you! Because we have Ms. Marca
Bristo and every time I talk to her, let me tell you,
I'm ready to go out and start marching somewhere. And Marca, you were
talking before we went to break, you were responding to that question about
youth and your youth leadership summit which I think is so important for our
future.
Do you want to talk about
that a little bit more?
>> MARCA BRISTO: Well,
what I ‑‑ your question was, am I concerned that there isn't a
good gathering of youth coming up to fill the gap, and I answered by saying
there was real concern that that would be the case, but I'm ‑‑
I feel so optimistic now, I am seeing so many wonderful young people coming up
right now all around us, all around me, and I think the challenge for the
movement now will become not are there enough leaders, but do we, the current
leaders make room for the new leaders.
Are we willing to practice that principle of giving away power begets
power and that is something that I think all of us need to, in our own way,
look for how we can do it, because there's more than enough work to be
done. There's more than enough room for
more and more leaders.
And then the final thing that
I wanted to say is, it's ‑‑ it also doesn't surprise me that
some of the young people who are coming up don't want to go into the advocacy
arena. In some respect, this is the
first idea generation the young people who have graduated with the protections
of the Individuals with Disabilities Act ‑‑ they've had to
fight for protection under those laws, but they didn't have to fight to get the
law, and I think, therefore, some ‑‑ some have grown up
assuming that their rights were there, and in some respects when they go out
into the world and start experiencing the challenges and the remaining
discrimination that is out there, which in fact it is, I think sometimes that
will toughen their resolve to get involved.
Change often starts because
people feel something different personally, and it pushes them into action.
>> JOYCE BENDER:
Yes. And, you know, I want to remind
everyone there is a reason ‑‑ there is a reason, although
there are many factors, keep in mind there's a reason that so many Americans
with significant disabilities are unemployed in this country, and I
myself ‑‑ since that's what I do for a living ‑‑
run into it every day. And make no
mistake about it, discrimination is out there.
And as you said, you have to really feel it sometimes. Just do something about it.
>> MARCA BRISTO: You
know, Joyce, the unemployment issue amongst people with disabilities should be
a national disgrace.
>> JOYCE BENDER: Yes.
>> MARCA BRISTO: The
country should be reacting to the 70% unemployment, and that number goes up to
87% if you're female, disabled, and black.
The nation should be re reacting to it with a sense of outrage, but
we've become ‑‑ we've almost come to equate disability with
unemployment.
So much so, that we don't
expect it to be any different. And I
really do think that that is about to change.
The disability community has made economic empowerment, economic
justice, one of their next core priorities.
It's not enough to have your rights.
One wants to be able to exercise them and be able to, you know, go and
do things and enjoy life fully. And you
can't do that if you're living on under $6,000 a month, which many of the
people who turn to us for help are doing.
So we ‑‑ we
have to be relentless in our efforts to tackle the problems, not just
discrimination, the iniquities in education that kids are getting, the after‑school
training programs and the summer school programs that other kids get that
disabled kids are often left out of.
These are all the ingredients that result in kids unready to ‑‑
to work.
Now, fortunately a growing
number of them are insisting on something different, and I think that's where
the Disability Rights Movement and the broader coalition of organizations that
believe in diversity in the workplace have a responsibility.
>> JOYCE BENDER: Oh,
and I agree with you so much because if a nondisabled
person in this country heard that the unemployment was to those levels ‑‑
well, first of all, we would be in a total, you know, depression. We wouldn't be able to function. And that day has to change and we all have to
keep working to make that day come. But
you know what, Marca?
Since the signing of the Americans with Disabilities Act, you know,
prior to that day there was such enthusiasm, such joy, such fire for so many of
these things, but we have, in this country ‑‑ we have
witnessed a backlash from that original enthusiasm. You know, we have. And I'm ‑‑ I'm really
interested in hearing what you think about that.
>> MARCA BRISTO: Well,
first off, I think it's to be expected.
If you follow ‑‑ if you're a student of history and you
follow other movements, getting the law was just a beginning. Dr. King taught us that, you know, you
can legislate laws to restrain people from immoral behavior, but you can't
legislate what's in their heart. That
only happens when people are in community, learning from one another, and therein
lies the catch‑22. You need to have the laws in order to have me
working side by side with you or going to school with you or taking the bus
with you, so that you can get to know me and then the mystique and the mystery
and the fear dissolves. But if the laws
aren't enforced and one gets a rejection ‑‑ or a resistance, a
backlash, it's hard to take that step forward.
On the other hand, I also
want to point out that some of the backlash is not of that to‑be‑expected
category. It is the type that is organized,
it is fueled by and funded by a group of idiologs who
really don't believe in disability rights, who in fact believe in states'
rights, and I don't know what country they grew up in but I was taught when I
was in school that we passed the period where states' rights were considered to
be legal and moral and as the Supreme Court has shown us over and over and
over, that states' rights are being used as a subterfuge to squelch the rights
and opportunities of people with disabilities.
It's not a coincidence, if you trace this back. There are lots of think tanks and others who
have been promulgating this stuff in a fairly organized way. And that just means we in the disability
community have a bigger job to set the record straight, to fight the
misinformation with truth every time we see it.
I can't even tell you the number of times we've seen, at the level of
press, stories about how making something accessible for disabled people is
going to bankrupt somebody. It hasn't bankrupted
anybody yet. It probably will
never. And often when you strip away
the ‑‑ the rhetoric, the facts aren't even supportable. I'll never forget the story of ‑‑
on a particular national show, saying how expensive it was going to be to make
a post office accessible, and that they had a perfectly accessible ‑‑
acceptable ramp going in the back door, through the garbage room.
>> JOYCE BENDER: Oh!
>> MARCA BRISTO: The
price they quoted in the article was way inflated. It was nothing at all like what the reality
was. But we had to go sort out that
truth. We had to go to disabled people
in that community and say, "Help us get the facts
here."
And we have to get better at
working the press to our advantage each and every time we see misinformation
put out. And we can't be afraid of the
truth.
>> JOYCE BENDER: Yes,
that is right, we cannot be afraid of the truth. And, Marca, I know
that you speak throughout the world. I
know that you recently spoke at the Democratic National Convention, which
congratulations as a speaker. I mean,
I'm sorry that I did not get to hear you, but regardless of which convention
you speak at, I think it's so great, you know, to represent this country and to
see people with disabilities involved in politics.
I know that Justin Dart was
very close to you and of course he is forever the greatest individual that just
did so much for people with disabilities, but what is your feeling about people
with disabilities getting involved in politics?
>> MARCA BRISTO: Well,
it's absolutely essential. Lou Harris
has referred to us as the "sleeping giant of American politics" and I
think that's an understatement. There
are 54 million disabled people in America.
That number is growing, significantly growing, as the baby boomers age
into their disabilities and we see the real graying of America. We will only see those numbers grow.
>> JOYCE BENDER:
Yes. And with that, we will go to
break. This is
(Music)
>> If you have a
question or comment, please call toll free at 1‑888‑335‑5204. Now, please welcome back the host of
"Disability Matters," here's
>> JOYCE BENDER:
Welcome back, and what a show this has been!
I'll tell you what, we need to play this show over and over again so we
can just get that fire going across the country for people to stand up and talk
about something important, and that is their rights. And that's what we were talking about before
we went to break. We had been talking
about Justin and about getting involved with politics, and of course, as I had
said earlier on this show, the importance of being registered to vote and
getting out there and voting.
Marca, do
you want to make a comment about that?
>> MARCA BRISTO: Well,
yes. I want to sort of finish what I had
started before the break. First off,
disability is a bipartisan issue because disabled people are both Democrat and
Republican, and it's extraordinarily important to our movement that we have
activists involved in both parties.
Interestingly, I think sometimes people shy away from political
engagement out of fear, reluctance, ignorance, they
don't know what they have to offer. And
yet that is how change is made.
People with disabilities are
a growing part of the voter block. As I
said before the break, we ‑‑ we represent a huge swing vote,
and increasingly, because we're registered less than our nondisabled
counterparts, we also represent a vast opportunity to influence our election if
we, ourselves, can take charge to get ourselves organized, registered, and out
to the polls to vote.
We just did, in my
organization, a project where we matched our client files with the voter
records to determine who was registered, so we could work on encouraging people
to register. Only 12% of our client base
was registered.
Now, you can look at that and
say, "That's terrible" or you can look at it and say, "Look at
all those people that we have an opportunity to get involved in the process and
be able to make a difference." And
as you're watching in this election, it's the undecided voter that everybody is
appealing to. A large number of disabled
voters are undecided and they're undecided because the candidates have not made
their positions clear on disability issues.
We know from past elections that disabled people vote along disability‑specific
issue lines more than any other constituency, and yet few candidates articulate
those views at ‑‑ on the ‑‑ you know, on the
talk circuit. They may have articulated
positions in writing, but they don't get out.
We're not included in their speeches.
And it's a shame, because they are losing this incredible opportunity,
and we have a responsibility, the young leaders in particular who understand
this issue, we have a responsibility to get people organized and to get them
out there.
And while we're doing it, we
have a responsibility to make sure our Congress understands that our votes
count, too, as we have been looking at the issue of polling place accessibility
and cleaning up the iniquities in the electoral system, assuring that it's done
in a manner that every person's vote counts, including people who are blind who
cannot see many of the current voting machines.
We have the technology and the ability to not only make
sure that we have paper records, but that we also have used current technology
so that people can cast their own vote that is the way they want it. And be confident that it really got in the
box the way they intended it.
>> JOYCE BENDER: Well,
you know what? That is, though, so hard
sometimes to understand how we're in this situation. There are 54 million Americans,
approximately 32 million who could vote.
It's so hard to understand, first of all, of course, why we aren't
getting united because think of how much power we have. But then at the same time why we aren't
mentioned, you know, by the candidates in many of their speeches.
>> MARCA BRISTO: Well,
it's clear to me we're not mentioned because we haven't gotten powerful enough
for them to see us as powerful enough for them to mention. The day that we are, you will see us listed
at the top of the list as are seniors right now and we have that within our
power to do. It's really up to us. No one can do this for us. You know, Justin ‑‑ you've
mentioned Justin twice. He was my
dearest friend in the world. When ‑‑
he left us with two messages: Vote as if
your life depended upon it because it does, and lead on.
>> JOYCE BENDER: Lead
on.
>> MARCA BRISTO: How
much more clear can it be what we need to do?
>> JOYCE BENDER: Uh‑huh. Yes.
That's right. Oh, those words are
so true. They are so true.
Well, Marca, let me ask you: Before our show closes, you mentioned before
the Olmstead decision. We have many e‑mails
here which I told you I can't read all of the questions to you, but many of
them, that's what it was about, wondering how you feel we've really progressed
with the Olmstead decision. What ‑‑
how do you think we've done?
>> MARCA BRISTO: On a
scale from A to E ‑‑ A to F or 1 to 10 with 1 being bad and 10
being good, we're at about a 2.
There are states that are
leading the way that have really taken it seriously and have really begun the
process of closing institutions, creating innovative opportunities for people
to live in their own homes or in home‑like settings of their own choosing
with people with whom they want to live, and then there are states, like my
own, which is kicking and screaming every step of the way, doing everything
that they can to avoid full implementation of this Supreme Court decision.
For those listeners that
don't know what it is, a refresher, it says that ‑‑ it was a
Supreme Court decision under the ADA that said institutionalizing people
unnecessarily if they were able to live alone, if they wanted to live alone or
live independently, it was a form of discrimination. It's time to end it, and it's up to us to
push for that kind of change.
>> JOYCE BENDER: And we
can do that, and you listeners can do that by heeding Marca's
words here and, listen, getting in touch with your representatives.
>> MARCA BRISTO: And
becoming informed of legislation called MiCASSA,
which would require states to allow people with disabilities to have access to
home services in the same way that they now have access to nursing home
services. It makes no sense that we
put ‑‑ will allow people and make it an entitlement to pay for
them to live in a nursing home but we don't automatically allow them to live in
the home.
>> JOYCE BENDER: Yeah.
>> MARCA BRISTO: We
want to shift the resources and take away that disparity. After all, in most instances, it's a lot more
expensive to put a person in a nursing home.
And if you've ever talked to somebody who's lived there, they're liked
prisons.
>> JOYCE BENDER: They
are.
>> MARCA BRISTO:
They're like prisons.
>> JOYCE BENDER: They
are like prisons. And may I say that
this just happened to one of my employees after surgery at the hospital he was
at, who has paraplegia and the next thing you know they're shifting him to this
nursing home which was connected to the hospital. And I went down to visit him, and that's
exactly what I said. I said, "Hugh,
this is like being in prison," and it is.
But it is really like prison if that's where you're living. All the time.
>> MARCA BRISTO:
Yeah. There may be some instances in
which a person needs a higher level of support, but the current system, even if
that's why they go there in the first place, once they get there, everything's
against them to get out. And all too
often, they stay there for years and years and years.
We even have instances in
Illinois where nursing home workers are standing in the lines of the homeless
shelters recruiting people off the street to get them into the nursing homes to
fill the beds and pay their bills.
>> JOYCE BENDER: Oh, my
goodness. Well, Marca,
as you can see with Marca, it's always too short of a
time period, but before you go, Marca, we end every
show with a quote by a key leader in the disability community, and here is our
quote today. From Marca
Bristo, where she said: "But we still have an awesome
responsibility and opportunity to make the laws work for us. If we don't, well, nobody's going to do that
for us. Nobody!"
Isn't that the truth? Marca, it was an
honor to have you on the show. I hope
that ‑‑ and pray that other people have listened and will be
inspired by your leadership and in behalf of all Americans with disabilities,
thank you for what you're doing for us.
>> MARCA BRISTO: Thank
you, Joyce, for giving voice to us.
>> JOYCE BENDER: All
right. This is
(Music)
>> VoiceAmerica
would like to thank you for tuning in.
Please join us next Tuesday at 2 p.m. Eastern time for the next installment
of "Disability Matters" right here on the Internet leader in talk radio,
VoiceAmerica.com.
>> Do you know that
over 70% of Americans with severe disabilities are unemployed? Are you ‑‑ or know of
someone struggling with these issues, tune in to "Disability Matters"
with
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(Program ended at 3:00 p.m. ET)