Celebrating 40 Years of FREED

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

TONY SAUER: I remember the early days of FREED being pretty funky. Sam, it was a ragtag group of folks that were very passionate and a lot of volunteers and small staff.

WILLIAMS: Today, two former executive directors take a look back at 40 years of FREED, where we came from and what the future holds for the Independent Living Movement.

SAUER: 40 years ago, people had to fight for everything, for curb cuts, for accessible parking, for accessible employment. Now, much of that stuff is easier.

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

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WILLIAMS: Welcome to Disability Rap. I'm Courtney Williams. This month, FREED is celebrating our 40th anniversary. We were founded in 1985, through the efforts of people with disabilities in Nevada County, and the Nevada County Committee on the Disabled. This was a natural outgrowth of the Independent Living Movement, which grew out of Berkeley in the 1970s. FREED was one of California's first rural independent living centers. To celebrate our 40th anniversary, we're hosting a fun-filled night of music and storytelling at the Gold Miners Inn in Downtown Grass Valley on Saturday, September 27th, from 5:00 to 9:00 PM. More about that event later in the show.

Today, we're joined by a very special round table of guests. Tony Sauer was the executive director of FREED from 1995 to 2001. He went on to be the director of the California Department of Rehabilitation. Ana Acton is also with us. Ana started at FREED in 2004 as the Disability Community advocate, and then was executive director of FREED for 11 years. She then went on to lead the Independent Living Division at the California Department of Rehabilitation. She's now with the California Department of Aging. Our co-host, Carl Sigmond, spoke with Tony and Ana on Monday.

CARL SIGMOND, HOST: Tony and Ana, welcome back to Disability Rap. It's such an honor to have both of you with us. I just want to note that both of you were hosts of this show, and Tony was the founding host, so welcome back. Tony, I want to begin with you. Take us back, how did you first learn about FREED, and what was FREED like in those early years?

SAUER: Back in 1984-ish, a group of people got together that spun out of Nevada County Committee on Disabled. Sam Dardick and Geeta Dardick, and a handful of others led that group. I was with them at their first meeting when they came up with the name. It was actually the Foundation of Resources for Equality and Employment for the Disabled, and then later changed to FREED Center for Independent Living. That meeting sparked, I think, the interest of the community leaders.

Sam had a definite passion for the Independent Living Movement. Through his leadership and the board members, he gathered at the time, Tom Solinsky and others, Bob Watson, I believe Jeree Waller was on the board, and a handful of others, moved it forward and worked to get funding for FREED. Interestingly enough, the first bit of funding came from Tidelands oil money, which is some of the offshore taxes that oil companies were paying. That money helped start FREED back in those early days.

SIGMOND: Tell us, where were you at this time? What is your story? You are from Nevada County, or no?

SAUER: Yes. I actually was born and raised in Nevada County. Went to school here all through 12th grade. Just a few days after my high school graduation, I was paralyzed in a motorcycle racing accident, and my life took a abrupt turn. I went from athletic motorcycle racer to a paraplegic. I was injured in the Los Angeles Coliseum, so I spent my time doing my surgery for my back and the initial rehabilitation down in Southern California. I came home a couple of months after my disability, and I became a cabinet maker. I did that from about 1979 through 1990 when I went to work at FREED.

Like I said, I was at the FREED's first founding meeting. Then I stepped back because I was too busy taking care of my own business, and watched Sam and the others lead the organization to get it started from 1985 on. In 1990, I was getting disillusioned of building cabinets, and Sam hired me for a one-month position. Somebody was out on disability leave, and that 1-month position turned into 11 years.

SIGMOND: What was FREED like in those early days? What did you focus on? Who did you support? Take us back.

SAUER: As I mentioned, FREED spun out of the Nevada County Committee on the Disabled. That group focused on two things. They were the curb cuts in Nevada City. The reason that was so important is that the city leaders at the time said nobody in wheelchairs uses Nevada City, so why do we need curb cuts? These are granite sidewalks or historic, but we persisted and got the curb cuts put in, and now you see a lot of wheelchair users in Nevada City.

The other was the Grass Valley Library, which is an old Carnegie Library. It had no wheelchair access. Actually, none of the libraries in the counties were wheelchair-accessible at the time. The librarian, Madelyn Helling, did not want the library to be wheelchair-accessible because she thought it would hurt the historical significance of the building. Those of us who were advocating at the time pushed for it, and now there's a ramp into that library. The Helling Library, ironically, is fully accessible as well.

That was the impetus that got a group together and got folks ticked off, and FREED spun out of that. Along with Sam and others watching Ed Roberts and what he was doing, starting CIL, the Center for Independent Living, in Berkeley, and working at the Department of Rehabilitation. Sam was good at finding money, and he was able to work with our legislators and get the funding for free. I believe two other centers started at the same time. I think it was Santa Cruz, and possibly Modesto, were the other two that started at the same time as FREED.

SIGMOND: Once you got funding, or once FREED got funding, and got up and going, what was the focus of the organization in those early days and years?

SAUER: I remember the early days of FREED being pretty funky. Sam, it was a ragtag group of folks that were very passionate, and a lot of volunteers, a small staff, and a small, little office up off of Presley Way when it first started, and then it moved to the office at 154 Hughes Road, where it stayed for many years, behind the Quick Stop market there.

The big focus early on was getting in-home supporter service workers and homecare workers. That was a big need in the community. Getting more accessibility, getting council meetings, making those physically accessible, and accessible to those with hearing impairments and visual impairments. We had a day for people with disabilities, where we got local officials in wheelchairs, and with blindfolds, and walkers, and canes, and wandered through the towns, and then had a big get-together at Friar Tuck's afterwards to debrief and folks could share their experience.

I think a lot of people learned from that, and a lot of relationships were gathered from that particular event. FREED did, I believe at the time there were five core services. If I'm recalling, they were peer support, which was important, and that was something that FREED did early on. The in-home care referral program, FREED definitely did early on. Systems and individual advocacy, and information referral. I believe those were the core services. There might have been one more, but I can't recall.

SIGMOND: Tony, I have always wondered why in California the IHSS program is not housed in the ILCs. I know in other states it is.

SAUER: ILCs used to have one of the core services of personal assistant referral, and FREED did actually a pretty remarkable job versus many of the other independent living centers. We had a personal assistant referral coordinator and had a list of candidates that wanted to go to work. We tried to match those up with those folks who needed assistance. That would be running ads in the paper. If somebody had a provider that was working four or five hours a day and they needed more hours, we would refer them to somebody else for the other hours. Then I believe it was 1999 when the enabling legislation to start the in-home support of service public authorities was passed.

There was money available just to do that particular core service. Unfortunately, many of the independent living centers just said, "Oh, great, let the public authorities take care of that and we won't do it anymore," which was okay for those on IHSS, but those who are private pay, got left hanging in the lurch because there was no referral service for people who did not have IHSS. The public authorities were doing a good job of providing workers for those who needed it, who qualified for IHSS, but those who were private pay were not really getting any assistance and were left to their own devices.

SIGMOND: Thank you for that. Ana, I want to bring you in here. Hi. It's so great to see you and have you back on the show. People who have listened to this show for a while know you and know your story, but for our newer listeners and readers, take us back to your journey to FREED.

ANA ACTON: It's so great to be back, Carl, to Disability Rap. It's been a few years, so thank you for the invite. My first introduction to FREED really was through Sam Dardick, which it sounds like Tony and I have that in common. Actually, much of our story, I feel like we have somewhat parallel stories. Sam Dardick was a friend of my family's and a neighbor. He was the sit down gardener, as we referred to him, gardening and maintaining a homestead, building his own home. Was a neighbor of my family, and who were also doing something very similar, farming and growing food. He was a family friend.

When I was a freshman in high school, I was injured in a car accident and became a paraplegic. Before my car accident, I really had no understanding or knowledge of FREED. Sam was a family friend and came over. My family built a very steep ramp for him to be able to get into our house that had stairs. He was a friend. It wasn't until after acquiring my own disability that I became familiar with FREED and really understood a little bit better the work that Sam was doing.

I know that FREED was very supportive to my family after the car accident, trying to figure out what life was going to be like, what resources were available to me, and actually helped me with some advocacy. When I wanted to go back to school, I wanted to ride the school bus with my friends, and they actually helped me advocate with the school to be able to ride the school bus. That was my first experience with FREED and awareness was their support in navigating resources and advocacy.

SIGMOND: I love the story. Tell us the story about wheeling into FREED. What do I remember about file cabinets, or am I mixing up two different stories?

ACTON: After acquiring my disability, I was not really part of the disability community as I would say I am now, but found myself doing various sports. Wheelchair mountain bike racing was my thing, and so some of my first advocacy and connection to community and others with disabilities was through sports, which seems to also be a common theme with the FREED story. I went to college, and then I was ready to get into the workforce. I put my resume around many different places around Grass Valley, Nevada County, interviewed some, and really was having a difficult time landing a position.

I'll just say that one of the things that was really important to me was to get an education, get a job, and have some sense of self and control in my life. I think from originally becoming disabled, there was a lot of themes and things that I heard from the medical profession around would I ever be able to work again, the idea that I was always going to have to be on Disability benefits for my whole life. If anyone knows me well, I'm a little bullheaded at times, and if someone tells me that I'm never going to work, or I'm going to be on benefits for the rest of my life, it's actually really important to me to have a different narrative and a different story for that. I really wanted to get into the workplace.

I wanted to plan to get off of disability benefits, and had a really hard time finding a job. I applied at FREED until, I think it was Tony maybe even. I know Sam encouraged me to apply. There was a community organizing system change advocate position open at FREED, and so I applied. I came to the interview. I'll never forget that interview. I think I left terrified almost. There was role-playing in the interview of a very angry consumer, his name was Sparky, who was left at a bus stop and was calling me through this role play. What was I going to do about it? That the bus had left him, it wasn't accessible, and he needed to get some place, and what was I going to do about it?

I left that interview and got a call, and got offered the job. It actually took me a week to call back and accept the position. I think part of it was being newer to the disability community, my whole life was defined by disability. At that time, I wasn't sure that I wanted a career in disability as well. Ended up being the best decision ever. I now have work that I'm super passionate about, I can relate to with lived experience, and really have enjoyed my career.

The file cabinet, there was someone who interviewed me and never offered me a job before the FREED one. I was qualified for the job. It was really just a clerical job. I remember them asking me, "Well, how are you going to be able to reach the top shelf of the file cabinet?" I thought, "Well, we can relocate the paperwork that is needed every day to a lower one and reorganize things so that the top one is only things that are needed never or rarely." Those are the kind of things that I experienced when trying to get employment. I think there was a lot of fear, misunderstanding, not seeing me for who I am, and not seeing the role that I could play to benefit the business.

SIGMOND: Thank you, Ana. It's always so great to hear that and be reminded of the important work we do every day. Tony, I want to bring you back in here. As you worked at FREED, and then worked at DOR, the IL landscape changed a lot, and it keeps changing. In a moment, I want to bring us up to the present, but first, can you talk about what you see as some of the most important changes you've seen an IL over the last 40 years?

SAUER: There are many landmark events that happened since 1995 when FREED started. The Air Carriers Act, the Fair Housing Act amendments, and then most importantly, the ADA, the Americans with Disabilities Act of 1990. FREED was very involved with all of that legislation, particularly with the ADA. Sam and Geeta Dardick actually flew back for the signing of the ADA in 1990. Before that, everything was an uphill battle and a big fight, and it was very overt.

Ana mentioned her experience trying to get a job, and the file cabinet being an obstacle. That was more of a covert move not to hire her, but before 1990, there was just a lot of discrimination, a lot of things we did not have rights for. After the ADA was passed in 1990, businesses took it seriously, or at least started to take it seriously. One of those was our local fairgrounds. Ed Scofield was the director of the fairgrounds at the time, and he hired FREED to do the transition plan for their accessibility. We still, to this day, benefit from that work that was done nearly 35 years ago in 1990.

In subsequent years, the Fairgrounds, even though it's an old, old facility, and some of the grab bars are a little funky because their pipes screwed into the wall, but they do have grab bars, and they do have accessibility. For many years, we had a day for people with disabilities at the fair, where folks could get in early if you had a disability, and could get in free that day. We had wheelchair sports doing demonstrations, and we had paraplegic comedians. We had Mark Wellman coming down doing rock climbing. Those were things that FREED pushed after the ADA was passed.

In the late '90s, the authorizing legislation to start public authorities in-home supportive services happened. After that happened, we started what was called up in this area, the Nevada Sierra Regional In-Home Support Services Public Authority, now known as Connecting Point. That was a big move to help unionize the workers so they could get a better salary, and they could have medical benefits. Much good came out of that program in 1999, and in 2000, 2001, once the public Authority got up and running. FREED was instrumental in all these things.

Because of our proximity to Sacramento, the leadership of FREED has always been leaders in Sacramento. Sam was the president of the California Foundation for Independent Living Centers for a couple of years, particularly in between the cuts that Governor Deukmejian tried to put in place in 1990 to cut funding for independent living centers. Sam was leading the protest for that and successfully won. They did such a good job, those early leaders, that ILC funding has never been attacked at the state level since that time.

I was the president of CFILC for a couple of years in 1995 through '97. [unintelligible 00:27:59] was the president of CFILC later, and Ana, I believe you were the president of CFILC at one point. That proximity to Sacramento has given FREED a good foothold to be involved with statewide advocacy, and folks have done a lot from this area. For a small, little rural community, we have a lot to be proud of.

SIGMOND: Ana, I see you nodding. Do you want to come in here and bring us up to the present? I know when you hired me at FREED, I knew nothing about IL. One of the first principles you taught me was about the cross-disability nature of IL and of ILCs. That is something we've not yet covered today, so can you touch on that and bring us up to the present?

ACTON: Thank you. Reflecting on listening to Tony talk about some of the work in the early days and the role that FREED has played in statewide and national advocacy, I just want to say that that's really has been an important role that FREED has played, partly because of the proximity to Sacramento, for example, but also, I think, in just the leadership. When it comes to civil rights and for advocating for rights, there's different roles that different organizations and different individuals play, and there is a time and place.

FREED has been there for it when there's a protest needed, where there are specific cuts being threatened to very important programs that help people with disabilities remain in the community and get their needs met. There's letter-writing campaigns, there's advocacy, there's protests that have occurred, and the Independent Living Movement has a long history of this. The Rehabilitation Act, the Rehab Act, to establish the regulations, and the lack of establishment of the regulations led to the longest sit-in of any federal building. I still believe in history, where people with disabilities sat in and advocated and insisted that regulations be written so that the people's rights could be protected under the Rehab Act.

Then there's also a time and place to come to the table, and to find a seat at the table, and to be able to help find the solutions to policies that will help ensure they're responsive to the needs of people with disabilities. FREED has a long history of that, of being able to pivot and to be able to be at the table, to be able to community-organize when needed, and to be able to really make sure policies are advanced that meet our particular needs. I just think that's a really important role that FREED has historically played for many, many years, as well as direct services.

Part of the power of the Independent Living Movement really does reside in its cross-disability lens. There are specific disability groups and advocacy groups that have done phenomenal job ensuring that the rights of their particular communities needs are met. When you look at the blind community has been just phenomenal and has really led the way in a lot of advocacy work and to ensuring they have equal access to society as a whole. The Independent Living Movement looks at it from a cross-disability lens, and I think there really is power in that because with 20% or more of us living with a disability, that's a large group of individuals that have similar experiences.

With the cross-disability work, whether you have a physical disability like I have, or if you're blind, or if you have a mental health disability, or cognitive disability, what you'll find is that there are often common experiences. Things may look different, accommodations may look a little bit different, but look at transportation. Many people within the disability community might rely on accessible and affordable transportation. If you're someone who's blind, you may rely on the public transportation system, but also if you have a physical disability, you also might rely on the public transportation system to be able to get around town, and to work even. These are the things that we have a common thread.

They might look different, I need a lift for my transportation needs, accessible transportation, but many people with other types of disabilities need reliable, affordable transportation that will meet their particular needs to access the community as a whole. FREED serves people regardless of type of disability. It also serves people regardless of what age the individual is, so from children to older adults. Last I looked, actually, the majority of who FREED serves are older adults and then also of income. That also makes FREED the Independent Living Network really relevant, I think, and important, and that you don't have to be eligible for Medicaid or Medi-Cal to get services.

Bringing us up to the present, I think that FREED has done an amazing job in advocacy and helping individuals advocate for their own needs, but also being at the table, working with the county, working with other organizations, working with your legislators to advocate for the rights of people with disabilities. I also will say that it's really at the heart of FREED is the advocacy, and that's at the heart of the Independent Living Movement as in general has been that advocacy piece.

They also have done a really good job through the various leadership at executive directors to also look for potential funding sources, look to diversify funds, and look to stand up programs that also meet the needs of this population. I think that that also is really something that's-- they're always innovative, FREED is always been innovative, and always looking for the opportunity to collaborate and coordinate and leverage other funding sources to really be not just an advocacy, but also a service organization within the community.

SIGMOND: Thank you, Ana and Tony. As we wrap up, from where you sit now, where do you want the IL Movement to go, both locally here in Nevada County and the state and in the country? We are, unfortunately, seeing cuts to disability services at the federal level, and then this May attempted cuts at the state level. How can we be effective in our advocacy and service delivery going forward?

SAUER: Well, Carl, this question could take up the whole show. I think that what I would like to see is folks with disabilities not be apathetic. 40 years ago, people had to fight for everything, for curb cuts, for accessible parking, for accessible employment, and now much of that stuff is easier. We have curb cuts, we have accessible parking, many employers will hire somebody with a disability if they're qualified, but there are still many areas that don't meet accessibility guidelines. There are employers who do discriminate both overtly and covertly with people with disabilities.

There's a lot of oppression going on to folks with mental health issues. There's legislation even within our own state to restrict folks that have severe mental health issues and try to get them off the streets instead of getting them assistance and helping them live in the community. I would like to see people with disabilities get off their butts and fight for the rights for themselves and others. I can probably say a little more than honest since I'm retired from state government and she's not, that goes everywhere from our governor down to the legislators, that we do need to do more for people with disabilities and people with disabilities need to do a whole lot more for themselves to increase accessibility, to increase awareness.

There's just so many areas that need help. 40 years ago, if somebody was parked in accessible parking spot, it was probably because they didn't have a placard and they were parked illegally. Now, you can go to AAA and get a placard. They give them out so easily to folks that there's no parking space available because they're all being used by people with placards. Even those people who could walk a few feet or don't need the wide unloading area like Ana and I do for our vans, they're parking in the accessible parking space even though are available.

Just to start would be to get more accessible parking and be a little more restrictive on who gets a placard and who gets a license plate, so that the parking is available for those who truly do need it. I could go on for a long time on the subject, but I would say folks with disabilities need to quit looking to somebody else to fix their problems, and need to step up and start taking--

Thank you, Tony. Until using a van with a wheelchair lift, I was able to squeeze into regular accessible parking spots and get in and out of my vehicle more easily, but I don't think people understand how important that cross-hatch is. If you have a van with a lift, you are so much more limited as to where you can park and actually be able to get out of your vehicle. Please, if you don't need the accessible aisle, the van-accessible parking spot, just know there are people who actually need that one spot in order to be able to get out of their vehicle. [laughs] I appreciate you saying that.

To your point and to your question, Carl, I think there's a couple of things. It's really important to see people with disabilities in leadership positions. When I say leadership positions, that's any place where we're visible, we're contributing, and to be able to talk about our disability and be able to share our experience is really powerful. What I find really interesting, and I will attribute this to the Independent Living Movement, is that there's a lot happening in the space right now of really lifting up individuals with lived experience, and ensuring that people who have the experience are part of the solutions and are at the table.

Something I hear working in state government time and time again is "Nothing About Us Without Us." That is a quote from the Independent Living Movement, that we as people with disabilities should be consulted with, and should be part of the solution, and should be engaged in ensuring policies are responsive to our needs. I hear that all the time, and it makes me grin, and it makes me happy. I see so much effort around ensuring there's a place at the table for people who have the experience, so we're not creating laws, we're not creating policies that don't actually work for the people who need it.

I would encourage listeners to share their story. When we open up and are willing to talk about our experience with disability, it also opens the doors for others to be able to tell their story, and to be able to relate and be able to work collectively together. I think that is really going to be important moving forward. Collaboration and coordination, I think, is just so critical. We know that budgets can be tight, and so the more we can leverage our collective and work across different organizations and community efforts to lift up accessibility and inclusion and all its way, the better off that we're going to be.

FREED has always been good at this, and hopefully will continue to be, and it's really a model for other organizations, of just continuing to be innovative and to modernize. We have to make sure that we're meeting the needs of people today and into the future. I think for independent living centers, for example, the heart is around advocacy, what Tony said. We need people to be able to advocate for their own rights, we need to be able to be at the table to advocate for the community, and sometimes we need to do things differently to keep up with the times with the changing environment.

Really keeping that heart of advocacy, but also being willing to innovate and do things differently, work with partners that may be obvious partners, but other partners that you wouldn't even think of, to really make sure all systems, all initiatives are inclusive of people with disabilities.

WILLIAMS: That was Ana Acton, former executive director of FREED, now with the California Department of Aging. We also heard from Tony Sauer, another former executive director of FREED, who went on to lead the California Department of Rehabilitation. As we've been mentioning throughout the show, we're heading into FREED's 40th year, and we're kicking off the celebrations with a benefit concert, FREED Fest 40, on Saturday, September 27th from 5:00 PM to 9:00 PM at the Gold Miners Inn in Grass Valley.

The venue is fully accessible, with plenty of parking on site, and we've got a great lineup of local bands. The hotel bar will be open, along with food and drinks to purchase. All the musicians are generously donating their time and talents, and the event is also made possible by our generous sponsors, Westamerica Bank and Pawnie's Home Care. Tickets are $40. We also have a sliding scale option. It's going to be a great night. We hope to share it with all of you.

And that does it for the show. Disability Rap is produced and edited by Carl Sigmond and me, Courtney Williams. You can go to our website, disabilityrap.org, 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're brought to you by KVMR, in partnership with FREED, and we're distributed by PRX, the Public Radio Exchange. For Carl Sigmond and the rest of the Disability Rap team, I'm Courtney Williams with another edition of Disability Rap.