December 06, 2022
Celebrating the 50th Anniversary of the First Center for Independent Living

DOR’s Joe Xavier and former Rep. Tony Coelho on the legacy and future of the ADA.

On today’s show, we celebrate the 50th anniversary of the first Independent Living Center in the world, founded in 1972 by UC Berkeley students. Joe Xavier, Director of the California Department of Rehabilitation, tells us how California is leading the way in creating a more accessible, equitable workforce, and why that matters to people with disabilities across the state. Former US Congressmember Tony Coelho talks about how growing up with a disability led him to sponsor the ADA. And we hear voices from the Independent Living Street Festival in Berkeley on October 22.



COURTNEY WILLIAMS, HOST: From KVMR and in partnership with FREED, this is Disability Rap. 

TONY CUELLO: We would not have an ADA if it weren't for your group, who aggressively went out there and convinced people to support this effort on civil rights. Civil rights enforcement is critical for us, and everybody else who has their civil rights challenged. 

WILLIAMS: Today, voices from the 50th anniversary celebration of the Center for Independent Living in Berkeley. 

VANESSA CASTRO: Independent Living means I am able to live on my own, with assistance, and being able to do what I want, and have my art business. 

WILLIAMS: That's all coming up right here on Disability Rap. Stay tuned. 


CARL SIGMOND, HOST: Welcome to Disability Rap. I’m Carl Sigmond, and I’m here with Courtney Williams, our Production Assistant who is co-hosting this show with me today.  

WILLIAMS: FREED is one of over 400 Independent Living Centers in the United States. We are non-residential resource centers operated by and four people of all ages and disabilities. If we don't offer a needed service we can usually refer to a community partner that does. Our goal is to support people with disabilities to live in the community of their choice with the supports and services they need.  

The Center for Independent Living in Berkeley emerged out of a successful campaign by University of California, Berkeley students to get the services and supports they needed to attend the University. Having succeeded, the students realized that the work would need to continue if people with disabilities were going to get the resources to live independently in the community. Thus, in 1972 the Center for Independent Living was born. The Berkeley CIL served as a model for other Independent Living Centers that would spring up across the country including FREED, which was founded in 1986.  

In October of this year the Berkeley CIL celebrated its 50th anniversary with a summit that brought together past and present leaders of the independent living movement. Today we bring you some of the voices from that summit. Tony Cuello, who represented California in the U.S House of Representatives from 1978 to 1989 is credited as being the lead sponsor of the Americans with Disabilities Act in the House. 

SIGMOND: We’ll hear from Representative Cuello in a minute, but first we hear from Joe Xavier, the Director of the California Department of Rehabilitation, who talks about the current work the Department is doing support people with disabilities to be gainfully employed.  

JOE XAVIER: We are living in once in a generation opportunity for transformational change. And disability is included in today's conversation like never before. The conversations must normalize disability and to the fabric of society. Society needs to be as comfortable discussing disability as they are discussing food or sports or entertainment. And we're in a period of time where we'll see change continuing on a pace and a scale like we've never seen before. The transformation of the workplace and the workforce, with the times that we're in, the evolution of a hybrid workforce, not anything I ever thought I'd see in my professional career, or in my lifetime. And we are transforming systems through bold, stretch impact goals, right. 

I just had an opportunity to share with Zona Roberts that when Governor Brown appointed her son, Ed Roberts as the Director of the Department of Rehabilitation, it was bold it was transformative. Every director since has been a person with a disability. Representation matters, and when we see ourselves, we too believe that we can belong.  

We have now the opportunity to embrace service delivery through systems that we may not have thought of in the past because of this transformative period. Systems like Ted mentioned, education, systems like the justice system. All places where we need to go and engage in employment actions in ways that we've not done in the past. Employment includes not just getting a job, it's keeping your job, and it's the opportunity to advance in that job. Services, services include anything an individual needs to get that job, keep that job, or advance in that job. We deliver them locally through 85 offices across the state, and it includes post-secondary education, Career Technical education, or simply going into the job and progressing through the opportunities that are made available.  

We provide student services today more than ever before, to ensure that we are preparing today's youth for tomorrow's employment opportunities, for tomorrow's leadership opportunities. We provide services to business so they will hire, so they will keep, and they'll promote individuals with disabilities within their businesses.  

What are some of the transformative initiatives that I'm alluding to? Getting individuals ready for employment. We are doubling our student services from serving 30,000 youth a year here in California to 60,000 youth a year here in California. And we're working to do that in months, not years. We are piloting aligning our caseload by industry sectors rather than zip codes. That means that if somebody is interested in the health care field, we will target the specialized skill for that individual to pursue that employment in the health care field. We are engaging businesses and hiring managers in ways that we never did before, so that they have a better understanding of the talent, and the potential that people with disabilities bring to their workplace. And so they are more open-minded and willing and able to hire those individuals. We are essentially shifting a paradigm, that says the business hiring people with disabilities is plain good business sense, right?  

We have the state as an employer and we continue to do a lot of work. Governor Newsom has embraced a number of initiatives to advance the state being a model employer, because the state is the largest employer in the state of California. When we talk about systems change, focusing on prevention and intervention, we have ended sub-minimum wage here in California. We are engaged with the K-12 system, to change the certificate track to an alternative diploma track, so that every kid leaves high school with the skills they need to be gainfully employed. We are embedding employment upstream in the substance use and disorder system, so that individuals with disabilities will have employment co-occurring with treatment.  

WILLIAMS: That was Joe Xavier the director of the California Department of Rehabilitation speaking at the 50th anniversary celebration of the Berkeley Center for Independent Living in October. Next we hear from former Congressman Tony Cuello, a Democrat from California who is credited as being the lead sponsor of the Americans with Disabilities Act in the U.S House of Representatives.  

TONY CUELLO: What most of you don't know is that Joe and I were born basically just a couple miles apart. He was from an area that when I was in Congress would always give me 90 percent of their vote, so I find it especially nice that Joe introduced me today. He does so much for our community, and California does so much for the community, and sets the stage for disability across the country. I wish that other states would do half as much as California does. But it's a problem in getting people educated as to what needs to be done, and make sure that these states and individuals include us with disabilities in everything that's done. Why they include everybody else on all these things, why not us?  

And so I want to tell you a little bit about, you know, employment to me means your ability to be like everybody else. Employment means that you have an opportunity to buy a house, or rent a house, or get a car, or whatever. To have a family and so forth. It's exciting to see when that happens. But more and more and more individuals need to have that opportunity. And so that's what employment means to me. It's why I'm so involved in so many different things in regards to unemployment. I'm 80 years old and I feel I have another 15, 20 years, and I'm not stopping, I'm going to… 

I've been able to do a lot of things in my life, I've been very fortunate. I thank God for my disability, it's made me a better, stronger person. It has made me passionate and committed to what I believe in. And so I'm not going to stop. Just because I was in the Congress and authored the ADA, that's only one part. It's what I’m doing next is what is really important. 

And so, I want to give you a little bit about how I got here, a little bit about why I'm so passionate on it. When I was 16 years old I had an accident, automobile accident on my family's dairy farm. I hit my head and that was fine. A year later I was in the barn milking, and I passed out. What I actually happened is I had a seizure. But my family didn't know anything about that. Being devout Catholics and people who believed in what the church said and so forth, they thought when the doctors said that he thought that I had epilepsy, they thought that because of my epilepsy, I was possessed by the devil. Now I continued to have these passing out spells, and went to different doctors, and they kept telling my family that it was epilepsy. And my family refused to accept it. They never told me these were the doctors were saying, but then after that, after three doctors they decided enough. So then, guess what? I went to witch doctors. I went to three different witch doctors to get rid of those evil spirits and so forth. Well, it didn't happen. It kept on having my passing out spells. And then and I finally said no, I wouldn't do anymore. And that started a split with my family as a result of my rejection of what they wanted to have done.  

And so I continued having these spells. I went to college, did very well in college, but I continued having these passing out spells. And then John Kennedy got assassinated, and I decided that if he could give up his life in service to people, why was I trying to become a trial lawyer? Why not do the same thing, and give back to folks. So I decided to become a Catholic priest, a Jesuit, that those of you know. And then I went to my physical, and the doctor did all these tests. And then he says, ‘have you ever heard the word epilepsy?’ I said no, and he said here's what it is, and that's what you have. Well I was thrilled because now I knew what I had, right? And so he said, I'll give you a prescription, it will reduce the number that you have. It's not a cure, but you can live with your seizures and so forth. So for the last 64 years, I continue to have seizures. And so he said the good news on that is that Vietnam, you’re 4F and you don't have to serve. But the bad news is that you can't become a priest. You can't become a priest because cannon law established in 400 A.D said that if you have epilepsy, ‘are possessed by the devil’ you cannot be a priest. So I was rejected.  

I was okay with that because I knew now what I had. I felt, you know, I had, I was student body president, and I got a lot of offers and so forth. I'll just do something else. Well, I filled out the job applications of the people who wanted me to do things. I never got one interview. And the reason is, that on those job applications was the word epilepsy and I checked. I was not gonna lie. And I never got an interview. I started to realize that there was something going on. My family rejected me, I can't get a job. Something was wrong, and I started to feel that everything had turned against me. My family, the church, God. and so forth. I became very depressed. I started drinking, and would be drunk every day by two o'clock. I then, I came out of it with the help of a lot of people. The day I wanted to commit suicide, I decided that I was going to change, and I did. And I won't go through all the details, but I did, and I got my mojo back and I was determined. And I was determined to be involved, engaged and so forth. 

And one of the Jesuit priests who was helping me during this period of time said I have an opportunity for you to live with Bob Hope. Most of you are too young to know who Bob Hope is, or was. But I lived with he and his family for a year. He said at one point, he said, look if you think you have a ministry and that it only can be practiced in a church, you're wrong. A true Ministry is practiced in sports, entertainment, business, government. But where you belong is in politics. Well I had not even thought of that. But if Bob Hope thought I should, they act, right? So I wrote a letter to my Congressman. I got the job and I worked for 13 years for him.  

Then I ran when he retired and got it and got elected. But in that process, I found my opponent who sat at a dinner one night he said, I don't know if you know it or not, but Tony's a very sick man. He has epilepsy. And what would you think if he went to the White House to argue a critical issue such as water - which is critical for California, but in the central valley really critical - went to the White House to argue an issue like water for us and he had a seizure? Well people at that dinner tonight were really upset. And a lot of them called me and said they would not vote for this guy and blah blah blah. A reporter called me the next day and said I understand your opponent said X, what's your reaction? I said well I spent a lot of time during the 13 years and a lot of people I know were upset and so forth, and they went to the White House. I'd be able to go. They would have fits, but it was okay for me to have them. And that ended, nobody ever used by epilepsy against me again. 

I want to just, I want to move forward that you know as a result of what I went through, I realized it wasn't fair what we were going through, those of us with a disability. And I didn't know at the time that Ed Roberts and others were in the grassroots building up support across the country. And Justin Dart was traveling to every state in the Union and trying to make sure people understood why we needed. I didn't know any of that, because I was, I didn't, I didn't know what was going on in this movement anywhere else. I knew what I went through. And so I started working with the Reagan Administration and coming up with legislation, because he was president at the time. And I ended up introducing the ADA. But it was all because of the Discrimination I saw. and the ADA really basically gives us our civil rights. But it's only a piece of paper, and what we need is enforcement of the ADA. So when you think, when you think whether or not you should vote, and who you should vote for, I tell you that the most important vote that you have is voting for president. Because the president decides who's going to be the attorney general, and that person decides who's going to be the deputy attorney general in charge of civil rights. Civil rights enforcement is critical for us, and everybody else who has their civil rights challenged. So you got to make sure that you are supporting people who protect you, who protect me, who protect our community.  

And so I, since that time when I left I decided I was going to continue advocating and I haven't stopped. And one of the things that I was most concerned about was employment. I had my struggles. I was denied an opportunity to do the job I really wanted. And I realized that others were in that same position. So starting with going back to Bill Clinton, and then Obama, and then Biden is that I've been very involved after they got elected in setting up a group to make sure that those of us with disabilities get appointed to federal jobs. And the reason for that is if we are involved in these jobs and we head up agencies and we're going to make a difference for people with disabilities across the board. And so I've been pushing and pushing and this with the Biden Administration we got something that we've never had before. And that was an individual on the domestic policy council. Now what that is, that means every domestic issue has to go through that council. And that way a person with a disability is at the table making decisions. Not outside the door that they come and talk to periodically, but at the table. And they're not only at the table, but they can bargain with somebody else. If you're interested in X then you better give me Y. That's what it's all about. And so we've had now for the first time, everything that goes through that council, we have a voice. And that's the type of thing I go back to making sure you understand - your vote matters, your vote counts, and so that's really important.  

I then set up a Cuello Disability Center at my alma mater Loyola University in Los Angeles. And we're just celebrating our fourth anniversary. But the goal of that organization, one of the items that's the most important is we set up Cuello fellows. And basically are individuals everyone has to have a disability. And individuals with disability that are going through college. We want to get them interested in the law. Why do we want to get them to be able to be lawyers? To be involved in corporations, to be involved in pro bono groups. But more importantly to have some of them end up on state and federal courts. That is what's critical. Because as you know, as you know, all these laws go through the process and people without disabilities are making decisions, what is good and what is bad for us. And I'll say this, that we need to be concerned right now that with this Supreme Court, there is a chance that they will look at the civil rights laws and say that isn't in the Constitution. Which is what they're doing now. And the ADA could be in trouble and so forth. Again, important who you vote for. So that's what I'm doing now, and I feel strongly, feel strongly about it, and we're making great progress. 

My last thing I'm working on, and it again comes back to employment, is that some of you know that while the ADA is important, getting use of the internet by people who are sight impaired, people who were hearing impaired, and a lot of people have physical impairments where they can't use a computer basically are not protected. And so what I'm working on right now and I'm strategizing for this group is that get the federal government, the justice department, the health department, the education department to develop rules and regs that say those all those agencies - meaning the whole federal government - is covered by the ADA. I happen to feel that it is, it's interstate commerce, right? And that's what the ADA covers, but we've had courts say it doesn't. And one of the good things is that one of the cases by - a lot of you eat pizza, so do I - but one of the pizza companies basically challenged that, and it went through the court system. The courts basically said that ADA did cover it. Went to the Appellate Court. The Appellate Court said, yes, it's covered. And then they appealed it to the Supreme Court. The Supreme Court denied covering it. Which was a good point for us, right? Because it says ADA does cover it. But then there are other courts in certain other areas where they have ruled that the ADA does not cover the internet. So eventually this is going to be at the Supreme Court. Your vote counts. And so it's going to be at the Supreme Court. So what we're doing is trying to get the Obama, the Biden Administration to establish rules and regs that say in effect that the ADA does cover the internet. And those rules and regs will be finalized by the end of 2023. And that's what we're really pushing hard, and that will have a huge impact. But you know that isn't enough. Joe, we're introducing and have introduced legislation that in effect would codify this, but more importantly people who develop the software are definitely not covered by the ADA. And so this law would put them under the ADA. And what does that mean? That means people who develop all the software for companies, and so they're giving them software that's not accessible for our community. So that is why we've got to cover them. And so we're working hard on it was introduced by somebody that you know on the Senate side, Tammy Duckworth. Why? Tammy understands why we need it. And it was introduced in the House by Congressman Sarbanes. So that legislation has just been introduced a couple weeks ago, and we will be pushing it. We won't move on it in this Congress because it's too late, but we will then be pushing it in the next Congress, and it depends who you vote for. So in the next Congress hopefully we'll have people that understand the need for this.  

So what I reason I tell you all this is that I'm still as committed as I was at 40 about making a difference in regards to our community. And I'll say one last thing: we would not have an ADA if it weren't for your group, who aggressively are out there and convinced people to support this effort on civil rights, to include in civil rights. So I may get credit for introducing it, but if you hadn't done the grassroots and so forth, if Ed was not involved, Justin Dart was not involved, we wouldn't have an ADA today. So thank you very much I appreciate being with you.  

WILLIAMS: That was former U.S congressman Tony Cuello speaking on October 21st at the 50th anniversary celebration of the Center for Independent Living in Berkeley. The next day, October 22nd. the Berkeley CIL hosted a street festival in front of the Ed Roberts Campus in downtown Berkeley. A group of us from FREED went down to Berkeley for the day, and I asked people on the street what Independent Living means to them. Here's Michelle Rousey, followed by Vanessa Castro. And listen closely because there's quite a bit of background noise. 

MICHELLE ROUSEY: Independent living means having the freedoms to live like anybody else does in the US. Having a freedom and supports that I need in the community to live. And I think it's important that we have those supports because I would be at an institution if we didn't have those supports in place. And I think it's important to continue having those community-based services, and that we don't have to fight for of all the time. I think right now that's a problem for our services. If we want them to continue and to be better, we need to speak up and make sure our voices are heard. 

WILLIAMS: Beautiful, Michelle. Thank you so much. Anything else you'd like to add? 

ROUSEY: Just keep fighting. I think it's important that we all have a say in our in in how we live in our communities. 

VANESSA CASTRO: Hi, I'm Vanessa Castro. Independent Living means I am able to live on my own with assistance, and being able to do what I want, and have my art business. Independent Living means I am able to live on my own with assistance and being able to do what I want and have my hard business. 

WILLIAMS: That was Vanessa Castro, and before that we heard from Michelle Rousey, speaking to us on October 22nd at the Berkeley Street Festival, part of the 50th anniversary celebration of the Center for Independent Living in Berkeley.  

And that does it for this show. Disability Rap is produced and edited by Carl Sigmond. You can go to our website to listen to past shows, read transcripts and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We are brought to you by KVMR in partnership with FREED and we’re distributed by PRX, the Public Radio Exchange. I'm Courtney Williams with Carl Sigmond for another edition of Disability Rap.