Senior Fellow with the Ford Foundation, since September 17, 2017, to the show.
July 3, 2018 - 2:00pm to 3:00pm

Joyce welcomes Judy Heumann, senior fellow with the Ford Foundation, since September 17, 2017, to the show.  Ms. Heumann will discuss her role in this capacity and her long career as an internationally recognized social justice leader, and longtime human rights advocate, especially for people with disabilities.

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Transcript

BENDER CONSULTING SERVICES

JULY 3, 2018

1:00 P.M. CST

"DISABILITY MATTERS" WITH JOYCE BENDER

 

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>> Welcome to "Disability Matters" with your host, Joyce Bender.  All comments, views, and opinions expressed on this show are solely those of the host, guests and callers.  Now the host of "Disability Matters," here is Joyce Bender

   >> JOYCE BENDER:  Hi, everyone and welcome to the show today and it is going to be a great show.  First, hey Yoshiko, special shout out to you.  I know all of my listeners, 17 countries, I know you hear me do this every show but that's because I am determined to keep Yoshiko and Justin's spirit alive so thank you for everything that you're doing, Yoshiko.

And special thanks to our Lead Sponsor, Highmark, for sponsoring the show, and another sponsor AudioEye, thank you both so very much.

I want to mention once again Ireland.  I mean, wow!  You guys!  I don't know what's going on there but you are a great listening group.  I mean, every country is but you have really been beyond the call of duty.  Keep it up, keep spreading that news.

Well, I can't tell you how excited I am about this show because boy does this fit into international work because today we have someone that, you know, whether the you're reading the history book, No Pity, or anything related to our history, everyone knows Judy Heumann.  I have to tell you something.  It always really gets to me.  You know, I've been to Indonesia, Japan, and South Korea and I'll actually be talking to Judy because in August I have to go to Kazakhstan and she has contacts everywhere.  Just to put it in perspective, I say you know Judy?  Judy Heumann?  Yeah, Judy Heumann.  She's just known everywhere for everything she's done and I'm just honored to have her as my friend and I mean it.  You're like a mentor and role model to me.  Judy Heumann, welcome to the show.

   >> JUDY HEUMANN:  Thank you, Joyce.  It's so nice to be with you.  And hello to everybody overseas and in the U.S.

   >> JUDY HEUMANN:  Well, I thought maybe because you know since this goes around the world, but nationally, I wonder if you could give just a few minutes to let them know because I know when I heard you speak about this in California at Loyola with Tony Coelho, it was just so powerful.

I wanted to ask you if you could tell a little bit about your childhood and when you had those first encounters with discrimination.

   >> JUDY HEUMANN:  So I'm 70‑and‑a‑half years old.  Shocking to me.  I was born in 1947 and I had Polio in 1949; and as a result of my Polio, I'm unable to walk and I have limited use of my arms, descent use of my hands but limited use of my arms, so I'm a post‑polio quadriplegic.

And in 1949 there was an epidemic of Polio and President Roosevelt had recently died and my mother and father were big fans of his and Mrs. Roosevelt, and when I got Polio, I think basically in the back of my mother's mind, she had the image of President Roosevelt who was the President.

So when I was 5 years old and my mother took me to our local public school and they said that I couldn't go to this school because it wasn't accessible, it was a shock to my mother and my father.  But I think, you know, having this image in the back of their mind about the Roosevelts over time really impacted their ability to become stronger advocates.

My parents both have deceased but they were born in Germany.  They came over in 1935 ‑‑ I'm sorry, 1934 and 1935, and my father was in the Marines.  Both my parents left my grandparents and one of them was a great‑grandparent and other family members, so when they met in 1946 when my dad got out of the military, they got married, and they were really anticipating working hard, living the American dream, raising a family, et cetera.  So when I was denied admission to elementary school in kindergarten, as I said, it was a shock.  So my parents were trying to figure out what to do to get me into school, and the Board of Education ‑‑ I grew up in Brooklyn, New York, and the Board of Education in New York City at that time because there were no laws that required that disabled children go to school, I think there was a requirement I receive an education, and so at that time what happened was the Board of Education of the City of New York sent a teacher to my home for a total of two and a half hours a week.  One day they came for an hour and another day they came for an hour and a half.

So my mother and father were looking for schools.  I didn't finally get into school until I was 9 years old, and then I was only in segregated classrooms for disabled children.

Now for the audience, you know, we had at that time in the '40s,' 50,' 60s, there was no Section 504 that prohibits discrimination in programming receiving Federal money from the government, we had no Individuals with Disabilities Education Act, and no American with disabilities education act.  And so I got into school in the fourth grade and then what my mother learned is for those children in the special classes, it was called Health Conservation 21, so those of us in the Health Conservation 21 classes which meant we had physical disabilities and had had issues with walking, problems with walking, or we're not able to walk.

What happened was my mother found out that those of us who used wheelchairs and couldn't walk were supposed to go back on home instruction when we went to high school, so my mother and a number of other mothers in the city began to organize and force the Board of Education to make some of the high schools accessible so that myself and other friends would not have to go back on home instruction.

So you know, throughout the beginning of my life I was experiencing both discrimination and also learning about advocacy, so I really credit my mother in particular because my father was supporting my mother and worked full time as a butcher in a small butcher shop with his brother, but the issue of discrimination for me as a 5‑year‑old kid, you know, you don't feel it as discrimination.  But when I didn't go to school until I was in the 4th grade, what I was seeing is my friends in the neighborhood who were beginning to go to school and I wasn't.  My mother had two other children, my parents had two other children, and my brother is a year‑and‑a‑half younger than I am, and so he started going to school when I was 7 or 6‑and‑a‑half, so as I got older I was really realizing that something was wrong, you know, the fact that I was unable to go to school but my brother was and my friends were.

So as I got older, it was something that I really was again really beginning to question, why am I not getting the same opportunities as others just because I can't walk.  That's really kind of the beginning phases of how I really became more of an advocate recognizing that you can't accept a no.  Sometimes they're legitimate no’s and you have to really make a decision with yourself as to whether or not the no you're receiving is legitimate or whether or not it's completely out of the question which usually is not the case, whether you need to look at mediation, negotiation and coming to a compromise, or whether you have to just fight for what you completely believe in.  When you believe a no should be a yes, looking at what you can do to make that happen.

   >> JOYCE BENDER:  You know, I've heard you tell this story, and still every time it's like so ‑‑ it's as if I always see something different and I did not realize how many years it was until you went to school, nor did I realize it was only two hours a week.  Unbelievable.  I mean, that ‑‑

   >> JUDY HEUMANN:  I mean, the other issue is when I went ‑‑ when I did get to go to the Health Conservation 21 classes, it was still not at all an equivalent education because I was like the other kids in the class.  It was a regular school building with non‑disabled children on the first, second, third, fourth floor and the disabled children went to school in the basement.  And I would get picked up about 7:30 in the morning ‑‑ I'm sorry, 7:00 in the morning and get to school around 8:30 because we had to pick up other kids.  And then by the time we were ready to start learning, it was 9:00.

But then it was occupational therapy, physical therapy, speech therapy.  I didn't get speech therapy but occupational therapy and physical therapy.  Lunch was an hour and mandatory rest hour and then we started getting ready to leave at 2:00 because the buses left at 2:30, so you can see that I was definitely receiving more education, but it was not six hours a day.  It was typically two to three hours a day, and I wasn't in a 4th grade class.  I was in a classroom with kids who were 9 to 18.  Because in these special classes, students stayed there until they were 21 and then they went to sheltered workshops.

In the group that my mother was working with helping to get the Board of Education to see that they had to make some of the high schools accessible, that was really the first time.  I was the first student to graduate from my Health Conservation 21 classes to ever go on to high school.  Before that students stayed until they were 21 and went into a sheltered workshop.

Now, most of the students in the classes had cerebral palsy and most children should have been going to high school but weren't and I was the first student who had had Polio and then my friends, Freida who also passed away a number of years ago, she had muscular dystrophy and had used a wheelchair too, and we used to joke that we integrated the program one student who had Polio and one student who had muscular dystrophy.

I also want to say that what was interesting at that time is that the school itself, the Public School 219 was basically 99.9% white school, but the special Ed class ‑‑ the special education classes were all racially integrated, so some of the classes that were going on at that time were different than what those of us with disabilities were experiencing because we had children in our class at that time who were African American and Latino, particularly from Puerto Rico.

Now of course, things have changed and it's more diversified but we did not go to classes that were all white, nor did we go to summer camps that were all white because the summer camps too, were racially diverse.  So I think that was really an advantage amongst disadvantages that I was experiencing, so there was a lot going on in my youth and other people's youth.

   >> JOYCE BENDER:  Wow.  You know what?  I can't believe how smart you are, I mean, with that education you're talking about.  Obviously, you're intelligent to begin with, but your mother was really a freedom fighter, you know that?  She really ‑‑

   >> JUDY HEUMANN:  Uh‑huh, yes.

   >> JOYCE BENDER:  She was.  She was really ‑‑ she was determined.  It takes great parents like that.

   >> JUDY HEUMANN:  As was my father, and I think that was good, you know, my father really supported my mother and, yeah, it was a good combination.

   >> JOYCE BENDER:  Yeah.  Right.

   >> JUDY HEUMANN:  But I always say for the parents in the audience that are listening, being a strong role model for your children is very important.  You need to believe that your children can succeed in life, and when they are experiencing discrimination you need to play an appropriate role, age appropriate, and by that I mean if you believe your child should be receiving a certain type of education that they're not getting regardless of the country that you're living in, you need to fight for them to get an education that's equivalent to other children in your family or in the community and your children will grow up to respect you for really advocating on their behalf so that their future life will be better so they could be able to contribute to work, and the members of the community, contributing members of the community with disabilities, and it helps overall to help your local communities recognize that disability is a normal part of life and as such, you want to remove the barriers that are precluding or limiting people’s ability to contribute.

   >> JOYCE BENDER:  Yeah, because you know of course I'm living with epilepsy and I always tell parents, every time you say to your child, shh, don't tell anyone that you have epilepsy, you're really saying shh, there is something wrong with you.

And just like Judy, how she had great role model parents but they also believed that she could excel just as any other child, you know, when you don't do that you are setting that child up for disaster when it comes to employment, not just social engagement, but employment so you know pity is the worst thing you could absolutely do, and I agree with Judy 100% about that.

Judy, when you look in history books, even when I was in Japan, there are photographs of you doing the great sit‑in that occurred in Berkeley, and I wondered since I feel our history is so important, I wonder if you could talk about that for a few minutes.

   >> JUDY HEUMANN:  Sure.  I lived in Brooklyn until I was 25 and then I moved to Berkeley, California to do two things; one was to attend graduate school, I went to the University of California, Berkeley and got my Master's in Public Health, and then I also got involved in the beginning stages of an organization called the Center for Independent Living in Berkeley.  There were about 700 centers for independent living in the United States, and they're all over Europe and Asia.  They're beginning a little bit of centers for independent living in Africa, but when I moved out to Berkeley and I got involved with the CIO, got on their board and started working with a gentlemen named Ed Roberts and another gentlemen named Phil and a number of other people, and standing up ‑‑ I shouldn't say that ‑‑ in developing the Center for Independent Living which was a cross‑disability organization that works on empowerment of disabled individuals, including in the areas of employment, but significantly really working with disabled people and local county, state, and federal government on both development of policies and effective implementation of policies that will benefit disabled people.

And as CIO developed, Ed Roberts who was one of the founders of CIO became the director of the Department of Rehabilitation in California and used some of the Federal money for the rehabilitation services programs to help set up other centers for independent living.

So in California we had 11 centers for independent living, and there were a few centers in Michigan and Massachusetts.  And then between 1973 and 1978, there was a big movement to try to get Federal funding to set up these programs, so just hold that in the back of your mind.

In the Bay Area in California where I said that we now had had across the state 11 or 12 centers for independent living that were very active in local communities, hold that thought.

By 1973 there was a law, the Rehabilitation Act of 1973 that has an important provision called Title V.  For any of you interested in disability rights, Title V of the Rehabilitation Act of 1973 is a critical piece of our history.  It has provisions in there which prohibit discrimination against disabled individuals if an entity is receiving money from the Federal Government and that's called Section 504.

The Section 501 and 502 and 503 and 504 are important, but we're not going to discuss most of those today.  But the law was signed in 1973 and then we had something that people may not know about, but typically after a law is passed at the Federal level there is something called regulations.  Regulations basically are intended to interpret what the law says, that people have responsibility for implementing it and people who will benefit from the law understand what the law is and what the law isn't.

When Title V of the Rehab Act was passed in 1973, Section 504 was only like 42 words and it basically said that you can't discriminate based on disability if you're getting money from the Federal Government, but it didn't say what that meant.

And so what happened between 1973 and 1977 is there was a lot of work that was being done by at that point Health Education and Welfare and disability groups in the United States to make sure that the regulations were good and clear and respectively written and implemented so that in fact we would be able to obtain our rights as defined under the law.

And President Nixon was the one who signed ‑‑ I'm sorry, signed the statute and then when he left office, President Ford, and over that period of time there were groups of disabled people that were working with the Federal Government to develop regulations, and in 1975 there was an organization that was established called ACCD, American Coalition of Citizens with Disabilities, and it, unfortunately, lasted about seven or eight years but it was a very effective organization when it started.  Its chairperson was a wonderful woman by the name of Eunice Fiorito.  She was a blind woman originally from Chicago who moved to New York City and became the Head of the Mayor's Office on Disability, and she became the chairperson of ACCD and a gentleman named Frank Bowe, a deaf man, became the Executive Director.  And the board was cross‑disability and it was made up of national disabled‑run organizations.

Between 1975 and 1977, the coalition was doing a lot of work on the development of regulations, and in 1976 when President Ford ran against President Carter, Carter promised that he would have his administration sign the regulation and so many of us Democrats worked on his campaign.  So when he was elected in 1976, we were expecting the 504 Regulation, which we felt were good.  They were obviously like anything, a compromise, because universities and hospitals and public schools and transportation systems, any entity getting money from the Federal Government was going to have to comply with these regulations, and there had been a comment period and people were getting in their comments and the regulations were ready to be signed.

When Secretary came in under the Carter administration, he decided that he wanted to do a thorough review, which in and of itself was not bad because it was a switchover not only of a president but political parties, but what we started to hear was that he intended to make significant changes in the proposed regulations.

So ACCD had been having numbers of meetings with members of Congress and the administration, and finally I was on the board and the board in I believe it was February of 1977, basically said that regulations needed to be signed for Section 504 as there were.  We wanted no more changes.  If they hadn't been signed by a particular date, then there were going to be demonstrations around the country.

So in the Bay Area in California, remember we had the most centers for independent living, and one of the important parts of having community‑based organizations, not just centers for independent living, but it's that you can choose as we did to become actively involved in what was going on in our communities.  We were making alliances with organizations that were working in the area of disability, so we were also making alliances with many organizations that were not necessarily working in disability but that were social justice organizations, civil rights organizations, organizations that were fighting for equity, and we were working with them to get disability integrated into those agendas.

So in February of 1977 when the American Coalition of Citizens with Disabilities decided that we were insisting on the regulations being signed, in the Bay Area we set up like a working group.  It was called the Committee to Save 504 and it had a number of centers for independent living and many other different types of organizations working.

And so in April when the date came, the ACCD said if the regulations aren't signed we will have demonstrations.  There were demonstrations in all nine federal regional offices and in some other places, but in the Bay Area we had a working committee that had been working with the Regional Office of Health, Education and Welfare discussing that we were going to be coming and we wanted to talk about what was going and basically to say we were unhappy with the 504 regulations had not yet been signed in Washington.

But we organized really well.  We had about, I don't know, hundreds of people outside the Federal Building which was in San Francisco and it was not in Berkeley, and San Francisco was like a hub.  We had the demonstration, a group of people went into the Federal Building in San Francisco to have a meeting with what's called the Regional Director at that time in Health, Education and Welfare and we met with him and we met with his staff and we were very unhappy because they were not aware of what the sustenance of the regulations were and they hadn't been signed, so we decided that we were going to stay in the building overnight. 

So you can read about this.  You can go and look at something on YouTube called The Power of 504 and it will give you a really good historical look at what actually happened, but it was very important because disabled people with different types of disabilities, different ages, it was very intergenerational, plus disability, took over the Federal Building and we wound up staying in the building for 27 days.  20 of us left and went back to Washington DC to join protesters in Washington DC, but the only place where the sitting continued beyond one night was in San Francisco with the 504 Committee.  And we were successful, the ACCD and the groups around the country and the continuing pressure of the demonstrations in San Francisco resulted in the regulations being signed without any change, so we were really happy because we were knowledgeable.  We had worked on this issue very hard, and we had made contacts with senators and Congressmen, both republicans and democrats to talk about why this was so important.  The community of disabled people around the country had been getting involved in what was going on, so it was really in many ways the real launch of the National Disability Rights Movement.

   >> JOYCE BENDER:  Wow.  Would you tell them go, where did you say to go to see more about that?  Did you say where to go?

   >> JUDY HEUMANN:  Sure, maybe you can post it, it's called The Power of 504, and narrated by Kitty and she was one of the leaders of the 504 demonstrations and myself.  And Kitty and a number of other people played a role in helping to organize the demonstration.  Mary Lou Breslin, Pat Write, centers for independent living, disability rights, and Kitty, unfortunately, passed away but she was the one that narrated the footage and it's about 30 minutes or a little less and it's very informative and it's free.

   >> JOYCE BENDER:  I will do what you said.  Well Judy, I know you're going to be very happy to know that we have incorporated on our show every week, Advocacy Matters and I'm honored to be on the board of the Pennsylvania Disability Rights Network and to have Peri Jude Radecic, the CEO with us and so every week she comes on and gives all of my listeners an update.  So, Peri, welcome to the show.

   >> PERI JUDE RADECIC:  Thank you, Joyce and thank you Judy for all the work that you've done for all of us and the lessons that we're learning today are so important.  Joyce, today I want to talk about the ABLE Age Adjustment Act, and we've all been celebrating the ABLE Act which is also known as the Achieving a Better Life Experience Act and that was signed into law in December of 2014.

I think many of your listeners remember that the ABLE Act amended a section of the IRS Code to allow certain persons with disabilities to save money tax free to cover disability‑related expenses.  In addition, besides it being tax free, the resources that people with disabilities save in these ABLE accounts are not taken into consideration when determining eligibility for supplemental Social Security and Medicaid, so this was very important.

But Congress set an age limit on who could set up ABLE accounts and they limited it to a person who had acquired their disability prior to the age of 26, so it left out a lot of people with disabilities who acquired the disabilities after the age of 26.

So Disability Rights Pennsylvania is one of at least 159 organizations who are knocking on the doors of Congress asking Congress to increase the age from 26 to 46.  So in other words, we want Congress to let people who acquire their disability prior to the age now of 46 to be eligible to open up these ABLE Accounts.

And we think this is important for a lot of reasons, Joyce.  First, it opens the eligibility door to many more individuals with disabilities who could benefit from this tax savings, and then also be eligible for SSI and Medicaid.

And secondly, it would so significantly expand the pool of individuals who could open up ABLE Accounts because what we're hearing nationally is that there just aren't enough individuals opening up the ABLE Accounts.

So on our website, you can find the Bill numbers and they are Senate Bill 817 and the House Resolution ‑‑ the House Bill Number 1874, and both Bills are called the ABLE Age Adjustment Act and they're both called the same thing, so if you go to our website either later today or I know there is a holiday tomorrow so maybe by Thursday morning you'll find all of this information at disabilityrightspa.org, so as you know advocacy matters and so does your listener's help in finding more co‑sponsors for the ABLE Age Adjustment Act so we can get it on the House and Senate floor.

   >> JOYCE BENDER:  Wow, Peri, thank you so much.

   >> JUDY HEUMANN:  I have a question.  I have a question.  Can I ask a question, Joyce?

   >> JOYCE BENDER:  Yes.

   >> JUDY HEUMANN:  So great explanation.  For this one a little bit more about who can put money into these ABLE Accounts?

   >> PERI JUDE RADECIC:  Absolutely.  These are people that acquired the disability prior to age of 26, and an individual with a disability can open an account or it can be a person acting on their behalf.

   >> JUDY HEUMANN:  So it means that if I were to open an account, I could put money into that account and if I have family members who wanted to put money into the account, they could do that too?

   >> PERI JUDE RADECIC:  Absolutely.  Thank you for raising that point.  Yes, as long as you acquired your disability prior to the age of 26, you can open an ABLE Account and anyone could put money into that account for that person with a disability.  It could be family members, it could be friends, and it could be the individual themselves if they are ‑‑ could be employed and they want to put money in that account.

   >> JUDY HEUMANN:  Okay.  And are there restrictions on when they can pull it out?  Can they pull it out when they need it?

   >> PERI JUDE RADECIC:  No.  There are restrictions on how the money is to be used.  The money is to be used for their needs like maybe for additional healthcare, or maybe it is for clothing, or maybe it is for education, or maybe it is for some other purpose like that.

   >> JUDY HEUMANN:  Technology?  Technology?

   >> PERI JUDE RADECIC:  Technology, yes.  Uh‑huh.  Anything the waiver may not be covering or Medicaid is not covering.  It could be rent.  Uh‑huh.

   >> JUDY HEUMANN:  Basically, essential things that a person needs.

   >> PERI JUDE RADECIC:  Yes.

   >> JUDY HEUMANN:  And a lot of it is disability specific but rent obviously is critical because you need to have a place to live.

   >> PERI JUDE RADECIC:  And as we know, rents are so expensive these days.  Yeah, absolutely.

   >> JUDY HEUMANN:  I think what's really important is, is there a website that people can go to so they can read more about it?

   >> PERI JUDE RADECIC:  Yes, so soon either later this afternoon or by Thursday on our website, people can go and find out more information about the ABLE Act, and also people can find out information from the Consortium for ‑‑ I'm sorry.

   >> JUDY HEUMANN:  Citizens with Disabilities?

   >> PERI JUDE RADECIC:  Yes, thank you.

   >> JUDY HEUMANN:  That's good.  It's called the Consortium of Citizens with Disabilities, CCD for short based out of Washington DC and has more than 100 national organizations that are part of it.  And I think also the National Disability Leadership Alliance, NDLA is another consortium group.  This is really important and I'm really glad to learn more about it.

   >> PERI JUDE RADECIC:  Thank you for that and opening it up a little bit more.

   >> JOYCE BENDER:  And Peri, you will have it on the website so they can read about it in more detail.

   >> PERI JUDE RADECIC:  That's correct.  And we'll have links to the other organization as well like the ARC that has additional information about ABLE Acts.

   >> JOYCE BENDER:  Okay.  And the website?

   >> PERI JUDE RADECIC:  Is disabilityrightspa.org.

   >> JOYCE BENDER:  Go ahead one more time.

   >> PERI JUDE RADECIC:  Yes.  It's disabilityrightspa.org.

   >> JOYCE BENDER:  Okay.  Now, as you all know and I say this all the time but I mean it, no matter what the disability rights group is or no matter what the non‑profit is we all want them to fight for our rights and to do so much, and you can't do it without revenue.  So don't forget to take time to make a contribution, and Peri, thank you for the great work you're doing and have a great 4th of July.

   >> PERI JUDE RADECIC:  Yes, you too.  Thank you, Joyce.  Thank you.

   >> JUDY HEUMANN:  Nice to talk to you, Peri.

   >> PERI JUDE RADECIC:  Sure.

   >> JOYCE BENDER:  We do this every week because it's important.  It's important to know what's going on, so it's like a little news flash, and I really like how Peri takes so much time to really think about this before she comes on and talks about it.

So, Judy, you know what?  I'm going to skip forward because, wow, talking to you is so exciting that this show is going to be over before you know it, so I want to move down for a minute on what I was going to ask you about.  What are you doing right now?  Tell our listeners what you're doing right now.

   >> JUDY HEUMANN:  Okay.  So right now, I'm doing a couple of things.  One is I'm actually in the hospital with my husband who is sick, so I'm kind of here for a couple of days, but in the broader scale I'm a Senior Fellow at the Ford Foundation, and the Ford Foundation is based in New York.  It's not part of the Ford Motor Company, it's one of the largest foundations in the United States, and they're a social justice foundation.  I've been working with them since last July ‑‑ no, last August rather, both helping them as they're moving forward and integrating disability into their knowledge and into the grant‑making that they give, as well as working on a media project. 

I've been working on a media project which is looking at how other minority groups have been advancing over the last number of decades in both authenticity and representation in documentaries, television, now emerging media, and both from the programmatic perspective and also from the perspective of people that are working behind and in front of the cameras, the screen, whatever.

And I was convening last Tuesday, which was great with 27 different representatives from different entities, and then I'm going to be putting a paper out at the end of August, basically putting forward the findings.

And I think to summarize it very briefly, disabled people, like in every other aspect of life, are making a little bit of progress but if you look at what is actually happening with authentic representation of disabled people and our stories and disabled people as actors and across the area of all the types of jobs that are available, we are really, really, really behind.  And so my intent in that work is to really help get people together who are not only working in this area but are important in media in general but haven't necessarily been doing work in disability and to help advance that.

My fellowship ends the end of August.  In addition to that, I've been doing something called The Heumann Perspective, it's a Facebook program, and my name is spelled Heumann.  It's called the Heumann Perspective and we post videos of different people, most from the U.S. but not all, different types of disabilities, different ages, doing work in different areas.  It's basically storytelling, so now we have about 60 stories that are posted with more that will continue to come forward.  On Mondays we're doing something called Men's Crush Monday and most Mondays are highlighting a disabled man making a contribution, and Wednesdays is going to be Women's Crush Wednesdays and that's been very exciting.

And I continue to do international advocacy.  I'm on a number of boards of directors and active in my synagogue and, and, and, and.

   >> JOYCE BENDER:  And, and, and is correct.  And if you're interested in Judy coming to a conference or speaking, including anything internationally, you know I guess now everyone can reach you through that Facebook page.

   >> JUDY HEUMANN:  Yeah, and you can also ‑‑ so if any of you have watched something called Drunk History or heard of it, if you go to Google and put in Drunk History 504, you'll see an 11‑minute piece that was done on the demonstrations I was discussing and the woman who plays me is a woman named Allie, who is a paraplegic woman and first wheelchair user to ever perform on Broadway and it's a real funny piece.  The airplane, if you're going to watch it, did not participate in the demonstration, but it's a very representative picture of what happened during the 504 demonstrations.

I also did a TED Talk which you can go look at, so go to TED Talk and put in my name, Judy Heumann.

   >> JOYCE BENDER:  All right.  I have to tell you I saw that Drunk History, the one you're talking about.  Oh, that is so awesome!  And you know, it's humorous but it's so right on.  Make sure Drunken History you've got to look that up and see those videos.  They are, that one with Judy about 504, I love that.  That was so good, I really did.

Okay.  Well you still have a lot going on, no surprise to me because you are really a young 70, may I say.  When I hear young people talk about stress and how hard it is, here she is at the hospital doing this radio show, and that just says it all right there about Judy, her commitment to disability, her friendship which is priceless to me, and by the way we wish the best for Gorge, your husband.

   >> JUDY HEUMANN:  Thank you.

   >> JOYCE BENDER:  Judy, something I want to talk about, I can't end the show today without talking about it.  You know how I go to ‑‑ as everyone knows I own a company focused on the competitive employment of people with disabilities, and we have that new software product iDisability, our training product, so I am frequently going to all these new customers and, you know, Fortune 500 Corporations and often they'll want me to meet whoever is heading up their ERG group, and I'll go and it never fails ‑‑

   >> JUDY HEUMANN:  What is an ERG group?

   >> JOYCE BENDER:  An Employment Resource Group.  So at every company, they get employees with disabilities, but not all.  Sometimes it's people that have a child with a disability, and so this is like as if you'd have at a company the group for the LGBT Community, Veterans, et cetera, people right in the company.

So every time I go ‑‑

   >> JUDY HEUMANN:  And I think a lot of the ERGs, not just disabled people or family member, but people that are also interested in advancing inclusion in the company, right?

   >> JOYCE BENDER:  Yes.  Yes.  And sometimes that's the person that heads these groups, and often it is as a matter of fact, someone from diversity and inclusion.

Well, every time I go, this is what they'll say.  We named our group, Differently Abled.

   >> JUDY HEUMANN:  Oh, my God.

   >> JOYCE BENDER:  Or Different Abilities, or Abilities, or you'll never believe this one, HandiCapable, taking the dis out of disability, and I always tell them please don't do that.  I hate that.  That is offensive to the disability community, don't relabel us, you know, that's what you want to say.  That's what you want to say and that is because of the stigma you have attached to disability, but I know that you also have a strong sentiment and perspective on this, so for businesses listening to this.  Judy maybe you could explain why you feel it is important to use the word, Disability.

   >> JUDY HEUMANN:  I think you and I are on the same page, as are many other people.  Disability is a word that is not a problem word to me.  I am unable to walk.  I have a physical disability.  I'm not ashamed of it.  You have epilepsy, you have a disability.  People have all types of hidden disabilities and physical disabilities.  It is a term that we use to define who we are, and it's a political term for me because, you know, you look at other movements, Women, the Black Movement, the Latino or Hispanic Movement, the Native American Movement, people have names that define them, and disability is unfortunately an area where non‑disabled people feel like they can change the terms that we call ourselves.  And because many disabled people don't necessarily yet identify as having a disability, so someone with an invisible disability that could be caused by Lupus or any of a number, multiple sclerosis or whatever it may be, for many of those people the first thing they're dealing with is changes in their life.  They don't necessarily really know about the movement.  It's important for them to learn about the movement, it's important that our terminology is the terminology that is used, and I think we're seeing with younger disabled people that people are really coming together and recognizing the importance of identity.

So the two major terms that I think are acceptable in the disability community is the use of disabled people and people with disabilities.  I use the term Disabled People because all other movements, say I'm a black person, I'm a woman who is black, I'm a Latino, I'm whatever, and we're the only group that says people with disabilities.  But for some people that's a term that they want to utilize, so I respect that.  But at the end of the day, all of these different terms take us away from the substantive issue, so when looking at a company that's put together a group to look at issues of barriers that people are facing in the company, the name should be one which is in line with what the movement says, which is disabled people are people with disabilities, and getting into all of these plays on the word.  Imagine if somebody decided to say something like when you look at the word black, B‑L‑A‑C‑K and took away the B, you have the word lack, how insulting that would be?  But we're not supposed to be insulting on this.  There was a person named Paul, he unfortunately also passed away, but he was a historian, a disabled guy, and he wrote a number of books.  I saw him on a video once.  He was talking about what Joyce has been saying, all of these different euphemisms, and he said call me all boogered up, and of course he was joking because he was a disabled person.  Call me all boogered up, talk about substance, opportunities, training, talk about getting people jobs, getting married, living in the community, and leave our terminology alone.

   >> JOYCE BENDER:  Amen.  You need to speak at some of these national conferences to business leaders, and I have one in mind right now.  Right this minute.  Judy, thank you so much for being with us today, especially under the circumstances, but since this went so quickly I will be having you back on because we could now have a whole show about international disability, so I will be calling you to do that because I think all these things are so important.

I can't thank you enough.

   >> JUDY HEUMANN:  I want to thank you, Joyce, for your continued leadership and continuing to do this show, which I think, how many years has it been on now?

   >> JOYCE BENDER:  18.

   >> JUDY HEUMANN:  See?  This is phenomenal, so I also encourage other people in your communities, you know, I'm doing Facebook, Joyce has been doing this program for 18 years.  Get involved in local media, get involved in social media, more and more disabled people have great stories to tell, your stories are important, and Joyce's story is really important and looking at our history of being an activist in the movement and then beginning to do this program 18 years ago.  She's interviewed hundreds of people and all of them have great stories to tell, so thank you, Joyce.

   >> JOYCE BENDER:  They're all archived on my website, so feel free at Benderconsult.com.

Well before we go, we always end with a quote, and today that quote is "When it comes to independent living, it means bringing support to one another to create our own dreams of how we, we want to live our own lives," said Judy Heumann.  This is Joyce Bender, America's voice where "Disability Matters" at VoiceAmerica.com.  Talk to you next week.

 

 

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