Liz Weintraub is a self-advocate and advocate who has spent her life fighting to ensure that all people with disabilities should be able to make their own decisions.
In this week's episode Jo Ann Simons is joined by Liz Weintraub. Liz is a senior advocacy specialist for the Association of University Centers on Disability and the host of the YouTube series, Tuesdays with Liz-- Disability Policy for All. In 2011, President Barack Obama appointed Liz to serve on the president's committee for people with intellectual disabilities.
Liz is both a self-advocate and and advocate, who has spent decades fighting for policies that will improve the lives of people with disabilities. Her work has been shaped by her own experiences. Liz was born with cerebral palsy and an intellectual disability, and in her early 20s, Liz's parents placed her into a private institution.
That experience has shaped Liz's work to ensure that all people with disabilities should be able to make their own decisions-- whether it is about their health, their jobs, or where they live.
About Northeast Arc
Northeast Arc was founded in 1954 by parents of children with developmental disabilities who wanted to raise their sons and daughters as full members of the community. By having the courage to challenge professionals who told them their children could not be educated and would not live to become adults, these parents created the systems that enabled them to attend public schools, develop friendships, reside in the neighborhoods of their choice and to earn a paycheck. Over the years, our programs have expanded to support children and adults with a broader range of disabilities, including autism and physical disabilities. Today we serve thousands of people in nearly 190 cities and towns across Massachusetts. The goal of the Northeast Arc is to ensure that children and adults with disabilities are able to live, work, engage in civic life and play in the community. We work toward that goal by offering a wide variety of programs including Autism Services, Day Habilitation, Deaf Services, Early Intervention, Employment Services, Family Support, Personal Care Assistance, Recreation, Residential and Transition Services. Northeast Arc is overseen by a volunteer Board of Directors composed of individuals with disabilities, parents and siblings of people with disabilities, and business and community leaders. Programs are operated by a professional staff led by a Chief Executive Officer with 35 years of experience at the helm of the organization, and are supported by a large volunteer corps.
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Nothing about with us means that if there's a discussion about me or my friend, then I demand to be at the table. I don't just ask, I demand.
Hello. And welcome to All Things Disability, a podcast from Northeast Arc. I'm Jo Ann Simons, the president and CEO of Northeast Arc. Each day, Northeast Arc changes lives and discovers abilities for thousands of individuals with intellectual and developmental disabilities across Massachusetts.
We help them become full participants in their communities, choosing for themselves how to live, learn, work, socialize, and play. In each episode of our podcast, we'll speak with a leader in the disability space to learn how they promote inclusion and opportunities for people with disabilities.
Today, I'm thrilled to be joined by Liz Weintraub. Liz is a senior advocacy specialist for the Association of University Centers on Disability and the host of the YouTube series, Tuesdays with Liz-- Disability Policy for All. In 2011, President Barack Obama appointed Liz to serve on the president's committee for people with intellectual disabilities.
Liz is a self advocate, who has spent decades fighting for policies that will improve the lives of people with disabilities. Her work has been shaped by her own experiences. Liz was born with cerebral palsy and an intellectual disability, and in her early 20s, Liz's parents placed her into a private institution.
That experience has shaped Liz's work to ensure that all people with disabilities should be able to make their own decisions-- whether it is about their health, their jobs, or where they live. Liz is joining us remotely today via Zoom. Liz, thank you so much for joining us.
It's a big honor for me to join you. So thank you.
You're welcome.
Liz, for our listeners, who are not familiar with your work and you, could start by introducing yourself and telling us a bit about your professional and personal story.
I grew up with a disability. I'm lucky to say that I grew up-- I was included in all aspects of the family. I had three sisters. My parents are both dead, but that's not to say that I don't think of them every day and they influenced me a lot because they believed in who I am and who I could be every day.
But I guess, back up to my seventh grade, I was in school but I wasn't-- and the academic [INAUDIBLE] were OK. I wasn't the smartest kid, I wasn't the dumbest kid. I would just in the middle. And that's fine because my family is-- I didn't grow up in a well smart family. I grew up in just an average family. In seventh grade, eighth grade, and in high school, I wasn't included in school.
And I went to regular classes, but what I mean by included was I wasn't in-- I didn't have friends. I didn't go to football games or parties or things that I thought my sisters doing when they were in high school. So in 11th grade, well, sophomore and then 11th grade, I got tired and I complained to my parents. And they moved me to a boarding school in Cape Cod. And to this day, I still call it probably the best school in my life.
And it was a segregated school. And you say, why? Because I am-- I talk about inclusion all the time. and I think we'll be getting into that in a minute. But it was the best school in my life because I was included and I had friends. I was part of the school. I never wanted to-- I didn't get to be the class president, but I had friends, and to this day I still have friends.
Well, Liz, you talk about inclusion. And I think your experiences on Cape Cod, which was at the Riverview School-- so let's name them and give them credit because they certainly were part of the education and success of Liz-- that inclusion is complicated. And sometimes, there are environments at times in people's lives where you take a different path.
And I think that Riverview is an example of that. While, as we know, it's a segregated school, it provided you with opportunities to be included, to be a leader. And I guess-- I'm guessing it probably shaped you into who you are now, which is a leader in the disability policy world.
Yes. I have to say-- and yes, it does shape me. One of the things-- probably the only thing I have to-- I have bad feelings for Riverview-- and as you can tell, I'm a big fan of the Riverview School. But when it was my turn to-- when it was my parents' turn to think about what I would do after Riverview, Riverview didn't recommend college to me-- college to my parents, I should say.
And that really hurts me because my-- Riverview recommended college to most of my other friends, and I saw them going to college just like anyone else. And I went to a private institution. And to this day, I feel really bad about that.
But one of my jobs at work that I'm really proud of is I support students entering college programs to speak-- to be able to learn how to advocate for themselves.
Well, you'll be happy to know that Massachusetts last week became the first state in the country to provide access for students with intellectual disabilities to college in our college system. So your work is paying off in big dividends, Liz. And I want to thank you for that.
I did see that. And I'm really excited for Massachusetts. So thank you.
Yes. And we're grateful to Governor Charlie Baker for signing that bill when it came on to his desk. I mentioned in the beginning you're a senior policy advocacy specialist for the Association of University Centers on Disabilities, or AUCD. Can you tell us what they do and what your role is? Because I don't think many of our listeners know about the important work of the University Centers.
Sure. AUCD is a net-- our title is the Association for University Centers on Disabilities. And we have 67 UCEDDs, 52-- I think 52 or 54 LEND, Leadership Education Neurolodevelopmental and related Disabilities, and then 15 IDDRCs.
So I'll break it down. The IDDRC, which I just said, we have 15 centers around the country. I think you guys have a center at the Shriver Center in Waltham, Massachusetts. And they do hardcore science. And I had nothing to do with that, but they have-- they work with rats, and mice, and hardcore research.
And then we have a Leadership Education Neurolodevelopmental and related Disability program, LEND, we call it. And we have-- you have two of them in Massachusetts, one at UMass and one at the Shriver Center. And we train students who want to get into this field, whether first be pathologists or OT or physical therapists, and learn about disability.
And for those of you-- your listeners who would like to be part of that, it's a wonderful 12-month program-- 12 or 9-month program. It goes to 9 months because it's a school year. And you just learn so much. I was a LEND fellow in 2018.
And then we have a University Center on Excellence in Developmental Disability. And we have 67 of those. And we have two of them, one at the Shriver Center and one at the UMass. And one which is called the Inclusion for Community-- an Institute for Community Inclusion, and then the Shriver Center.
And what they do is [INAUDIBLE] connection between the community and the disability community and the research. So you're connecting that bridge between the community and the disability community at large, and you do advocacy and other kinds of things.
Thanks, Liz. We're very proud that we have two centers here. And I believe that the legislation that established the University Centers was done by President John Kennedy, which may have been a reason why we got cents here in Massachusetts. Originally it was at Children's Hospital Boston, which became UMass Medical Center, and the Shriver Center, of course named for his beloved sister, Eunice Kennedy Shriver.
We also are very proud here at the Northeast Arc, because we have several of our staff members who have been LEND fellows, and they bring back such excellence to their work and to their careers. So like you, I encourage any of our listeners who are interested in a career, or furthering their career because it can be midlife or later in life professionals, mid-career, to check out the LEND program. That's a capital L-E-N-D. You did a great job letting our listeners know about that.
I'm going to switch a little bit because this is the one that intrigues me the most, especially in light of the events of the past couple of weeks. In 2018, you had the chance to testify before the United States Senate during the confirmation hearing for Supreme Court Justice Brett Kavanaugh. During that testimony, you spoke out against his ruling in a case called Doe versus District of Columbia.
Can you tell our listeners a little about this case and why it was a blow to the civil rights of people with disabilities?
Sure. In-- I guess in 19-- the late '70s, there were two women who-- two or three-- I guess it was three women-- were two women, I should say, where they wanted an abortion and a cataract operation. And at that time, Judge Kavanaugh was on the lower court. Judge-- I testified on his hearing for the Supreme Court. But at this time in the '70s, he was on the lower court.
And so this is why the case is so important. The judge-- a judge in the lower court said, well, of course you need to listen these women. These women have a right to tell you what they want with their bodies. And Judge Kavanaugh, who was on the lower court, said, no, they have MR-- and I'm going to use MR. I hope your listeners know what MR stands for.
So Judge Kavanaugh said, no, they don't have right to tell you what they want to do with their bodies because, as I said, they have MR. So they went on with their lives. And they had to get an abortion. And they did this same thing for cataracts operation.
I as a person with a disability, I as a person with an intellectual disability, need support every day to make decisions. And I would not be able to make that decision on my own about abortion or cataracts. And I might not even understand what those mean.
But-- and yes, I know what they mean, but some people might not know what they mean. And that's-- maybe you need some support-- we all need support. I really believe that you don't make the decision without consulting with your family, or your friends, or your doctor, or whoever you want to consult with. And that doesn't mean that you have ID. That just means that you're smart because you want to make an informed choice.
And so I was asked to testify against Judge Kavanaugh. And by the way, no one knew about this case. It was hidden from the media. It was hidden. No one-- because I believe that no one cares about people with-- that case, why would you care about that case except if you're involved with a disability?
And so AUCD, when we found out that Judge Kavanaugh was nominated by President Trump, We started digging about his record. And we found this case. And I was asked to testify. And I can tell you it was the saddest day of my life to know that he got on the bench.
Well, Liz, you know that we don't always win all our battles. But I think we're way ahead in winning the war. And you brought up a concept that here at the Northeast Arc that we're really promoting and supporting, and that's supported decision making. And as you talked about, that nobody makes a decision without consulting with somebody or someone.
And we think that an alternative to guardianship is really something that's very important for families and individuals for with disabilities to understand, that there is something that you can use, that can be just as effective and promote the dignity and human rights of people with disabilities.
So just to let our listeners and to you know, if you don't know, we have a competition called the Arc Tank, where we give money to positively disruptive ideas and disability. And in the first year of doing it, we made an award-- the largest award that year, which was to the Centers for Public Representation, to support Supported Decision Making. So I want to thank you for bringing that up.
You know, there's a saying that not all our listeners may know about. But I'd like you to tell us a little bit about what it means to you, the saying, "nothing about us without us."
Oh, thank you. It's one of my favorite sayings. "Nothing about us without us" means that if there's a discussion about me or my friend, then I demand to be at the table. I don't just ask, I demand.
And the reason is because it's about me or my friends' lives. And I can tell you that there are so many times I or my friends' decision were-- we weren't even included in the decision making process. I can tell you when I was told not to go to college. Well, who made that decision? Riverview and my parents did. So I wasn't even included. I got to see where I was going, but it was just sort of like, oh, yes, try it on, like I'm trying on your shoes to see if they fit.
But I can tell you that a story about nothing about us without us, this happened when I was in-- probably I was 22, early 20s. And I was-- my parents called a family business meeting. And it happened during Thanksgiving. That's why I call it my Thanksgiving story.
And my family called-- my parents called a business meeting. And then to this day, I still don't understand about money issues and business issues. But that's not the point. The point is I should have been at that meeting because I'm part of that family.
And to make it even worse is my parents, since it happened during Thanksgiving, my cousins were over for the holidays. And my parents said to my cousin, quote, "babysit Liz." Why would someone say, quote, "babysit Liz," when I was 22 or 23, whatever I was?
But they said that because they didn't want me to go down there to hear what was going on. And so that's why I call it-- that's what nothing about us without us means to me. And supported decision means that even though I don't understand money, if you are my other friends, we all get together in a circle to talk about it, and to help the person. We need to be a part of that circle, and we need to be in the middle of that circle.
Liz, thank you for reminding us and making that very important point, especially for me. I think you know I have a son who's 43 who has Down syndrome. And he lives independently, has his own home and doesn't have any staff live with him, or he doesn't have any roommates. And every once in a while, I need to be reminded that he needs to be part of every decision making opportunity that there is.
Because when he lives by-- he's by himself all the time and making decisions 100% of the time, and then he comes home, and I sometimes slip into that mother role again. So thank you for reminding me that. And he also is a graduate of part of the Riverview School.
I wanted to ask you a question about are there areas where, when it comes to self determination for people with disabilities, where there's still discrimination, or where self-determination is not common?
All the time-- employment, education. I can tell you that we're fighting 14(c). And for listeners who aren't familiar with policy language, 14(c) is a certificate that allows employers to pay people some minimum wage. The minimum wage, I think, is $15 an hour. Don't quote me, I don't understand. But I think it's $14-- $15 an hour. Well, every one should be paid that amount of money.
But people are saying, if you have that certificate, and that certificate is called 14(c), you're allowed to pay people less than that. And sometimes people are paid pennies to an hour. And believe me, I was paid pennies by an hour when I was living-- when I was working in a workshop right after Riverview.
And we're trying-- there's, I think-- I think there's 16 or 17 states around the country. And I didn't have a chance to look up whether Massachusetts is one of them.
We've eliminated 16(c). We don't have any subminimum wage certificates. We'd be in big trouble if we did. And ours at the Northeast Arc was given up years ago, I'm proud to say.
Great. I'm really excited to hear that. But a lot of states still have that. And we're trying to have that eliminated on the federal level. And there's legislation that was introduced in the fall by Senator Casey from Pennsylvania and Senator Daines from Montana. And it's a bipartisan legislation, which is one of-- we're really excited about that.
And that's to say that [INAUDIBLE] that no state will have 14(c). And then you can get support to end 14(c) if your states do need help with technical assistance.
Thanks, Liz. And we'll remind our listeners, if you're in a state that's still allow sheltered workshops and subminimum wages, that you can get help to try to end that very regressive policy. Liz, I want to end this by giving you a chance to pass on your advice. Maybe, what advice you'd give self-advocates, or even to our neurotypical listeners, so they can become allies.
I think to just-- there's another saying called "all means all." And that means everyone needs to be treated equally. The last line of the Constitution says "justice for all." And the Constitution is, you know, we just have celebrated our independence. And I'm really happy. I think it was 244 years.
And we're not-- everyone isn't all-- isn't equal, and everyone isn't free until everyone is free. Can I share my advocacy? Because I don't think people-- I'm a self advocate. When I talk to Phil about what I want for dinner, when I want to-- what I want for my job.
But when I'm talking to you, or when I'm on the Hill, or when I'm just advocating for legislation, I have to be an advocate, just like you are. So thank you.
Thank you, Liz. And not only is Liz an accomplished self-advocate and senior advocacy specialist for the Association of University Centers on Disabilities, but I hope you won't mind that I share with your listeners that you're a happily married woman. Your husband Phil and you have a partnership that neurotypical listeners should be envious of because it's one that's filled with love and devotion. I know this because I follow you on Facebook.
I see that you've traveled this year to Paris together. And you took an Alaskan cruise. And you're off to Vermont. Do you want to say anything about marriage? Because that's something that we all can relate to.
The way I became-- my marriage or my dating-- so I was his friend before we became lovers, or romantically in love. You need to learn how to be your friend. And I always say-- and I always tell people on Facebook about roller coasters and riding a roller coaster.
I don't love-- I don't like roller coasters to this day. I probably have only been on one roller coaster, although Phil loves roller coaster, the scarier the better for him. But what I mean by that is that there are some days you might get tired of your spouse. There are some days you-- I could be-- I could be angry at Phil because of this or that.
And that's what marriage is all about. But there are other days that I will go to pieces, and I would not be able to be who I am-- I would not want to live a day without him.
Liz, that is, I think, just a beautiful way to end this. Thank you again to Liz Weintraub for joining us. If you'd like to watch her YouTube series, Tuesdays with Liz-- Disability Policy For All, we'll put a link in the show description. We want to thank Peabody TV for providing our wonderful recording studio.
And all things disability is made possible through the financial support of the Changing Lives Fund, which was created through a gift from Steven Rosenthal. To learn more about Northeast Arc and to find past episodes of this podcast, please visit ne-arc.org.
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