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Independent Living News & Policy from the National Council on Independent Living

Full Transcript of 2019 Awards Luncheon

>> Testing, testing…. yeah. [VARIOUS CONVERSATIONS]. (12:13:00 p.m.).

>> Hello — testing, one, two, three! If you guys could find your seats, we are going to get started.

>> I don’t think my microphone is on. (Tapping), yes, it is, sorry, I apologize for banging. (Pause).

>> If Cliff Perez, or Steve Higgins is in the room, please come to the stage. If Cliff Perez, or Steve Higgins is in the room, please come to the stage. (12:14:31 p.m.).

>>EMILY LADAU: All right. Tots and jammers thank you so much for coming to the NCIL 2019 awards banquet luncheon! [CHEERS AND APPLAUSE] I have the absolute pleasure in introducing a colleague, friend, and complete idol of mine, Emily Ladau, yeah, actually, you know what? Let’s give her a round of applause, really quick. He was the first youth at large, on the NCIL board. He is the editor-in-chief of “rooted in rights.” He loves peacocks as her favorite animal and featured on Sesame Street when she was young.

>> FROM THE FLOOR: What? !

>> And I have the absolute honor, and pleasure, of introducing, one of my very favorite people in D.C., nay the world, Kings Floyd — is clap, clap, yes,. [APPLAUSE]

>> So Kings was a former youth fellow for NCIL. She’s currently the cochair of D.C. ADAPT, a cannabis advocate and jewelry-making machine, so let’s give it up for Kings! [CHEERS AND APPLAUSE].

>> So before we begin, we do want to have a few quick reminders. As NCIL conferences in the past, this is a scent-free environment. We do have people, who have, sensory issues and we would appreciate, no perfume or scented items, when you are in — attending the Conference. (Pause).

>> (After conferring) so before we begin, we would like to recognize, the generous support of the sponsors, for this year’s NCIL Conference. And we definitely want to thank this year’s top sponsors at the soldier for justice, cedent Corporation, and Anthem, thank you, let’s give them a round of applause! [APPLAUSE]

>> We also want to express thanks and gratitude, to our other supporters, who make NCIL’s work and this event possible: Verizon. Walmart. Uber. Venmo. The WITH Foundation. Pharmaceutical research and manufacturers of America. Motor coach industries. Center For Disability Rights. Airbnb. Tissot. United healthcare. Pride Mobility. Molina healthcare, Portlight inclusive disaster strategies. National coalition for assistive and rehab technology. Mitsubishi Electric America Foundation.

>> And to our donors, Tracfon wireless American association for home care, American association for people with disabilities, and Yoshiko Dart, let’s give it up one more time! [APPLAUSE]

>> So thank you, again, to all of our sponsors and if you haven’t yet, please be sure to stop by the sales table and buy raffle tickets for our 50/50 raffle. And keep in mind the raffle is going to be tomorrow after the closing plenary. Do not miss the event. And remember, you must be present to win!

>> So we are going to start in — now, with our regional awards. These awards go to someone in every region, NCIL has ten regions — for their unbelievable advocacy and support for the IL movement. (A pause).

>> Can we have the presenter for the first regional award come on stage?

>> Okay, the region, 1, awardee, is David Correia. . We can — please.

>> He is now here to accept his award, but let’s give him a round of applause. [APPLAUSE]

>> David has been working at the metro west Center for Independent Living for 15 years. He started as an independent living counselor, and today is the director of advocacy. He has developed into one of the go-to people and leading experts, in the commonwealth of Massachusetts, with knowledge in architectural access, understanding the ADA, AG; and Massachusetts regulations. In his role as the cochairperson for the Massachusetts statewide independent living council, public information and education committee, he has worked to develop coalition to persons with disabilities, finding commonalities in the work we do; that have resulted in several victories, in the Disability Community. Last year, saw an increase in the availability of alternative housing vouchers, in Massachusetts. Helping to overcome, the barriers the lack of affordable available and accessible housing statewide. The 10 independent living centers in Massachusetts, received an additional 1 million dollars in funding, resulting in the cost of living increases, the that benefited staff throughout the commonwealth, and increasing the livable wage and being more in line with peers in government and increasing staffing levels, statewide. Dave PFS /* /* David’s passion for what he does is unsurpassed. He is not able to be here today with us, but in front of his peers at the Massachusetts state without independent living conference this fall. Everyone, let’s give it up for David, thank you. [APPLAUSE] .

>> Next I would like to present our region two award to Meghan Parker! Meghan Parker is the statewide coordinator for New York state systems advocacy network. She’s excellent at pulling advocates together to work on issues and she’s very well-organized and has the gift of making sure that everyone, within the Disability Community, is being heard, before decisions are made. She’s developed working coalitions, where people from different organizations can work together, and she’s developed excellent connections with representatives, from the Disability Community, legislators, and other key government officials, as well as community leaders. Meghan’s advocacy, coalition-building and statewide coordination, have enabled the New York CILs to pass laws that make the lives of people with disabilities more accessible. Such as: ADA Title II and 3, which were written into the New legislation, banning landlords from refusing to rent based on a source of income. Let’s hear it for Meghan! [CHEERS AND APPLAUSE]. (A pause).

>> I’m not Meghan, though,.

>> You’re not Meghan, who are you?

>> All right. You-all let’s give it up one more time, Meghan is not able to accept the award today, but we want to appreciate their great work and advocacy! [APPLAUSE]

>> Region 3. I am have happy to say this award goes to Shelly Houser. Let’s give it up for Shelly!

>> Go shelly!

>> Shelly works at abilities in motion, AIM in Redding Pennsylvania, and is very deserving of the Region 3 advocacy award. Shelly has taken a lead role within the Organization, to fight for every American’s right to vote. Yeah! She advocates to ensure individuals with disabilities, understand their rights and responsibilities for voting. Shelly is an active member of the league of women voters, brooks county chapter. She created a voter one-on-one curriculum for youth and adults with disabilities, shelly participated in a voter registration event, at Penn state Berkeley campus, or sorry Penn state burkes campus, she volunteered at a local church and nursing home to help seniors and residents request an absentee ballot. She advocates, trains, and recruits individuals with disabilities, and students to work in the voting polls. One more time, let’s give it up for Shelly Houser.

>> Next up, we have region 4, congratulations to José Morales José is the definition Of Independent Living. Self-determined, self-empowered and an advocate for equality. Whether at the office or in his community, José is a natural leader. In 2016, José joined the team in his CIL in Jacksonville Florida as an IL coordinator in 2018 he was promoted to ADA manager and now combines his knowledge skill set and connections to elevate and eliminate barriers to independence. His colleagues have selected him as the agency’s employee of excellence on multiple occasions, José serves on the city’s Hispanic American advisory council; mayor’s disability council, and national federation for the blind. José received his degree from the university of North Florida, and he’s fluent in Spanish. In 2018, José received congressional recognition from Congressman Al Lawson, senators Nelson and Rubio have personally thanked José for his community leadership and actively encourages others to access their communities, most recently José has led the effort to make a one-mile stretch of road safe and accessible for pedestrians receiving services from social service agencies. José sets the bar high, for independent living let’s hear it for José! [CHEERS AND APPLAUSE]. (12:26:42 p.m.).

>> All right! We’re going to — let’s give it up one more time for José! [CHEERS AND APPLAUSE].

>> All right. Region 5. I’m happy to announce that Region 5, is being recognized, The Ability Center for greater Toledo! [CHEERS AND APPLAUSE].

>> Under the leadership of executive director Tim Harrington, the advocacy team The Ability Center of greater Toledo, is recognized regionally and statewide for proactively addressing barriers faced by persons with disabilities. The advocacy team consists of Katie hunt Thomas, and Katie shelly, who fearless and seasoned advocates, examples of their work include having been able to increase the availability of transportation, in Toledo, Ohio Area, through diligently working with the regional transit authority, the Disability Community, and other strategic community partners. They are the valuable partner agency in the Ohio aging and disability transportation coalition. Shaping advocacy priorities, and strategies, to address barriers, and raising awareness, for the need of public transport in the state. In addition to their work in transportation, they are addressing barriers to community-based and long-term services, and supports such as EVV and provider wages on the state level. The center has also been working on a project called “Disability Dialogue” where they’re engaging the community to find out, what Toledo can do to become the most disability-friendly community in the United States. [CHEERS AND APPLAUSE]. This, on top of having worked with the local universities to implement a disability studies major, working with the p & A on ensuring the state was fulfilling its duties, as well as working on individual advocacy with consumers, The Ability Center staff regularly serves as a resource to other Ohio centers for independent living and the state independent living council Help their staff understand legislative initiatives and the regulations for the best way to conduct system change efforts. Their efforts have been tremendous of raising the level of advocacy across CILs. They are truly deserving of this award. Let’s give it up! [CHEERS AND APPLAUSE]

>> Next, up, from region 6, we would like to give this award to Julie Ross, Julie and her husband, Mark live in Dallas, where they home-school their two young daughters, Zola and Niko who has down’s syndrome she serves — on the board of directors for the ARC of Texas and is chair of the public policy and advocacy committee in 2018 she graduated from Texas partners and policy making she works as a healthcare and Disability Policy advisor to state and federal lawmakers and political candidates, with a degree, in psychology, and human rights from southern methodist university Julie is passionate about disability rights, And is someone living with mental illness, Julie is committed to eradicating stigma and celebrating disability pride! Let’s hear it for Julie! [APPLAUSE] all right. Let’s give it upone more time! [APPLAUSE] (12:30:52 p.m.).

>> I am proud to present the award for region 7. Region 7 award goes to Chris Owens. ! Chris Owens, is the executive director at Prairie Independent Living Resource Center in Hutchinson, Kansas, Chris’s commitment to the independent living philosophy, advocacy, and peer-to-peer modeling for service delivery have resulted in innovative, and successful programs, implemented across the state of Kansas, Chris’s center has helped successful — over 100 candidates find work using a peer to peer model and networking with vocational rehab staff even in the most rural areas of the state. Chris has been a vocal advocate on Disability Community issues in Kansas, ranging from the expansion of Medicaid, to ensuring that healthcare, insurance coverage is available for Kansans with disabilities and their in home worker to the lack of community services and supports for independent living in rural areas of the state and the need for accessible formats, education, and resources for blind and visually-impaired Kansans. He is a founding member of the grassroots advocates for independent living GRAIL and help the Kansas disability caucus organize to become an independent organization, and reinvigorate the every other year event to bring advocates from across the state to the network, Plan, prioritize, and organize advocacy activities for Kansans with disabilities, thank you, Chris! [CHEERS AND APPLAUSE] (A pause) (12:32:51 p.m.)

>> Next up, for region 8… we would like to present this award to josh Winkler! Issue XUN, /* /* josh is unfortunately unable to accept the award on his behalf is Robbie, josh Winkler embodies both independent living and a spirit of community. Josh values the people who fought for this privilege and is a role model for those new to the movement. He’s a member of ADAPT and dedicates his time to the Disability Community providing endless logistical and policy support to disability advocacy and social justice organizations. He easily communicates the complexities of public policy, and will drop everything to answer the phone to share his gifts and talents. Josh frequently represents our community during discussions with legislators, and state agencies about policies, including community first choice, Medicaid buy-in and employment rights for people with disabilities, this year, josh led ADAPT’s efforts to defeat and amend legislation that ensure attendants will receive a 8.1% increase for a work group attendance to have a real voice at the policy table and prevent a registry of workers for unions, he owns his own business cripple concepts as an engineer, he designs products to make life easier for people with disabilities, such as chargers that allow people to charge are all manner of devices from their wheelchair joysticks from their wheelchairs joystick knobs that actually work and much more, josh talks about how he got into this work to solve a personal problem, Medicaid and employment, but stays in it because he realizes the value and power of the Disability Community. Josh, has the trust of the disability community, the respect of bureaucrats, and the ear of legislators. As Josh says, kicking ass gets you photo ops, but kicking ass gets you respect and real access! [CHEERS AND APPLAUSE]. (A pause).

>> All right. The award for region 9, goes to Cindy Calderon. Let’s give it up for Cindy! [CHEERS AND APPLAUSE]. (12:35:27 p.m.) In 1975…. in 1975, as a teenager, Cindy Calderon began working in skilled nursing facilities as an aide. Though, she recognized that the way the residents were treated, and how they had to live was wrong, she did not yet think of it in advocacy terms. In 2003, Cindy began working as the system change advocate, at tricounty independent living in eureka, California. She discovered her passion for helping people, remain at home, and avoid institutionalization. While a system change advocate she also began working with skilled nursing facility residents so they could move back into the community. While working as a systems change advocate. Cindy was also invited to attend her first IHSS advisory committee meeting. Cindy is the president of the California Supportive Services Consumer Alliance, CICA, a group that offers education, and teleworking — and networking opportunities to the state advisory committee, on IHH — or IHSS to help them fulfill their mandate. Tricounty independent living is proud of Cindy’s exceptional work. Cindy led the way to continue, its work. And CICA has provided standing room only.

>>A FEMALE SPEAKER: L training in Sacramento for years, Cindy has also been an advocate against EVV and for rural public transportation. Her efforts have helped prevent EVV in California, from using GPS, and helping improve consumer access, and filing of complaints for local transit. Led by Cindy, a rider’s group was formed also the first of its kind in Humboldt county with members of the Disability Community drivers and management staff, altogether. California has approximately 500,000 recipients of IHSS. Many do not speak English. There is still so much work to do to keep the recipients of the advisory committee informed. Cindy is dedicated to continuing doing this work. Spread IHSS councils to other counties, to expand transportation and advocacy to other countries, to fight against people being sent to nursing home facilities, when it is unnecessary or against their will. Cindy Calderon has been an exceptional and remarkable advocate for people with disabilities, locally and statewide, and we are thrilled that she is this year’s region 9 advocacy award winner. Congratulations! [APPLAUSE]

>> And finally, last, but not least, we have our region 10 award winner, Doug Toelle!

>> Doug served as access Alaska advocacy director for many years, but has made advocacy, a central part of his life since he was diagnosed with multiple sclerosis in the early 2000s, Doug’s work has made a positive difference in the lives of not only Alaskans with disabilities, but also people with disabilities across the nation. One of Doug’s advocacy themes is connection, linkage and bringing the disability voice to tables and spaces where that voice is not typically present. For example, Doug serves on the NCIL board of directors, chair of the international committee. A Rehab Act committee member, a city of Fairbanks diversity counsel member national MS diversity member, university of Alaska diversity and inclusion committee Fairbanks metropolitan area transportation system pedestrian and bike subcommittee; the national MS society Alaska leadership committee; that was just to name a few. [LAUGHTER]

>> Doug is also a partner in public policy company information insights, the owner of the tourism company running reindeer ranch, he’s been at the table consistently and forcefully demanding change and has helped create a culture of nerve inclusiveness at places like a Fairbanks where a person from a marginalized group is required on all hiring, and disability walk throughs are required before any construction, the university of Alaska, where even in dire budget times an ADA coordinator is being hired policies and procedures were analyzed and changed to be disability-friendly; and the creation of an accessibility checklist was created, and compliance is required, for all university events. Doug also successfully accomplished regime change in unfriendly disability services using civil rights complaints. He adeptly uses all the tool in the advocate’s toolbox, Doug worked with Senator Murkowski’s office on healthcare issues staging the farthest north ADAPT action in the Senator’s office, then 11 when she voted the right way. During the healthcare debates Doug reached out and developed and has maintained partnerships, with LGBTQ + groups native organizations, environmental organizations, and women’s groups. In his spare time, of which he has none — Doug advocates for accessible travel, and continues to work to secure support for the Disability Integration Act. Doug’s work has been recognized many times, locally and nationally, in 2015 he was inducted into the national MS society’s Hall of Fame. Many of his efforts have been reported locally in the Fairbanks daily news miner and national publications such as new mobility. For all these reasons and more Doug Toelle has been nominated for the 2019 NCIL region 10, advocacy award. Congratulations, Doug! [CHEERS AND APPLAUSE].

>> All right. Cats and jammers can we give it up one more time for all of our regional advocacy award winners? [CHEERS AND APPLAUSE]. (12:41:36 p.m.) It is work like this, that gives NCIL, and the Independent Living Movement, our power. Congratulations to all the recipients. Okay, we are going to give you a short break, while we serve lunch, we will reconvene in a few minutes with our national awards. In the meantime, enjoy.

>> Enjoy, everyone! Thank you. [APPLAUSE] (12:42:03 p.m.). [STAND BY FOR LIVE CAPTIONS] (1:02:03 p.m.)

>> (Returning to the stage) . (A pause).

>> I’m ready when you are! [VARIOUS CONVERSATIONS]. (1:04:55 p.m.) [VARIOUS CONVERSATIONS]

>> Hi, everyone! We’re going to resume. (1:07:04 p.m.).

>> As you all continue to enjoy your lunch, please enjoy the dessert, from me, I only ate half of it, but I can tell you it’s pretty good. So first up, I have the honor of presenting the Diana Viets award. So…. the Diana Viets Award, for youth is meant to acknowledge, honor, and encourage our young leaders, who are promoting disability pride fostering the independent living initiative, for youth with disabilities in the Disability Rights Movement. I’m thrilled to announce this year’s winner, Angie Miller! Angie began the youth advisory council, at the Center for Independent Living in Northeast Florida and has been advocating for youth with disabilities, her entire life. Angie, most recently, spoke at the youth leadership forum for the State of Florida in Tallahassee. Angie directly spoke to the IL philosophy and movement, and the room was silenced by the power of her words. One of her many concerns is working with the youth, discussing self-advocacy and independence in their medical care, and program access to victim services. She draws her energy from the philosophy about nothing about us without us she prepares the youth through the Center for Independent Living to travel to the state capital to advocate with the state legislators, Angie is truly worthy of this prestigious award. Congratulations, Angie. [CHEERS AND APPLAUSE].

>> Angie, is unfortunately, unable to accept this award, on her behalf. Let’s give it up one more time for Angie Miller. [APPLAUSE]

>> Okay, you all know and love, I personally love this next presenter, our vice president of NCIL, Sarah Launderville! Whoo-hoo! [CHEERS AND APPLAUSE].

>> Yay, Sarah!

>> Personal, she-hero of mine.

>> And me! [LAUGHTER] SARAH LAUNDERVILLE: (Approaching), thank you. Sorry. Hi, everybody! Hi! [CHEERS AND APPLAUSE]. SARAH LAUNDERVILLE: Thank you so much. So I’m here to present the Corey Rowley National Advocacy Award. The purpose of this award, is to recognize individuals and groups for outstanding systems advocacy efforts, consistent with independent living goals, and philosophy at the national level. This work exemplified in the life of Corey Rowley, who was also a vice president of NCIL, and a proud woman with a disability. That lived and breathed Policy, and advocacy. This award is selected by the members of the NCIL Legislative and Advocacy Committee which is made up of all the chairs and cochairs of the NCIL legislative subcommittees. This award is a very big deal, and I’m thrilled to share this award, winner as Ann McDaniel! [CHEERS AND APPLAUSE]. . SARAH LAUNDERVILLE: So Ann McDaniel is the executive director of the West Virginia SILC. With both a masters and bachelor’s degree from Marshal University in Huntington, West Virginia. And has worked in independent living since 1985, 11 years, at a CIL, followed by her current position. She has helped develop seven SPILs, and a few SPIL amendments that have served as a peer mentor to eight other SILCs. Ann has provided national, state, and regional training on the history and philosophy Of Independent Living; the roles and functions of SILCs, SPIL development, strategic planning, measure — measuring consumer satisfaction; the legislative process; advocacy, parliamentary procedure, the Rehabilitation Act, and a variety of other disability and independent living topics. Please join me in congratulating this year’s Corey Rowley national advocacy winner…. Ann McDaniel! (Ann approaches the stage, accepting award at1:11:55 p.m.). (A photo opportunity taken at1:12:06 p.m.). SARAH LAUNDERVILLE: Okay. So next, we’re going to present the President’s aWard. Each year, NCIL’s President, identifies an individual, or organization, that they believe has contributed to the advancement of laws and policies, that protect or enhance the rights of people with disabilities. This year’s award winner, is Bob Williams! [CHEERS AND APPLAUSE].

>> Now retired, Bob Williams is the former director of the Independent Living Administration. Active in disability rights since high school, Williams came to Washington, D.C., to go to college, and has lived and worked here for over three decades, before joining ACL, he served as the senior advisor to the deputy commissioner — sorry. For retirement — [LAUGHTER] and Disability Policy at the Social Security Administration, in that role he led several interagency initiatives to create greater opportunities, and career paths, employment, and economic mobility for people with significant disabilities. In earlier roles, Williams headed SSA’s office of employment support programs, and has advised the kaiser Foundation, the commonwealth fund and other organizations on policy issues affecting the health, independence and economic well-being of people of all ages with disabilities. He also served as the commissioner on developmental disabilities and then, as the deputy assistant secretary for disability aging and long-term care policy — at HHS. He also helped gain the passage of the ADA, and to create community living services and supports, to children and adults, forest haven the District of Columbia’s institution for people with developmental disabilities, please join me in — as we award Bob Williams. [CHEERS AND APPLAUSE]. (1:14:10 p.m.) . SARAH LAUNDERVILLE: Okay. So I would like to invite, Colleen Starkloff to the stage, she’s going to help us introduce the Max Starkloff lifetime achievement award.

>> Mrs. Starkloff: Thank you, very much, Sarah, and thank you, NCIL, I remain very grateful for NCIL, for creating the Max Starkloff Lifetime Achievement Award. Hopefully, most of you know, who Max, was, he was my late — my late husband. And, I like to say, that, as a physical therapist, fresh out of school, who got a job in a nursing home, and…. had the good wisdom to fall in love with this man, I began to see that… there were plenty of people in the field of physical therapy, there were not enough people, in the field of disability rights. And I began to see disability, not as something that you try to cure. I began to see disability, through the lens of Max Starkloff, a person, with a significant disability. So…. It’s a particular honor for me, today, to present this award, the Max Starkloff Lifetime Achievement Award…. to my very, very, very dear friend, who I love very much, Marca Bristo! [CHEERS AND APPLAUSE]

>> Marca, is a NCIL cofounder, and the founder, president, and CEO of Access Living, a Chicago-based disability service and advocacy organization, that empowers people with disabilities, to lead independent, satisfying lives. Access Living, is nationally-recognized, as a leading force in the disability advocacy community. And Marca has worked for more than four decades on local, national, and international social and policy reforms that protect and promote, the rights of people with disabilities, You know, Max was the first president of NCIL, Marca was the second president of NCIL; and when Max was running for president, to renew his term as the first president, Marca, and Judy, came up to him and said max, we really need a woman and max was like, okay, and he stepped down, and then Marca became the president, and that was a good thing, In 1994, she was appointed by presides bill Clinton to chair the national council on disability. Becoming the first person with a disability to hold the position Earlier, as a member of the US task force on the rights and empowerment of persons with disabilities, Marca worked to draft and win passage of the Americans with Disabilities Act. [CHEERS AND APPLAUSE]

>> More recently, while president of the — of the US international council on disabilities, she campaigned for U.S. ratification of the UN convention on the rights of people with disabilities. That’s the short version of who Marca Bristo is, the long version — version: Is a longtime disability rights leader a champion of disability rights, one of my mentors, and she has never, never, never, left us — Marca, congratulations. [CHEERS AND APPLAUSE]. (A photo opportunity taken at 1:18:51 p.m.)

>> Marca Bristo: Hello, NCIL family. And thank you very, very much, for this honor! [CHEERS AND APPLAUSE].

>> Marca Bristo: It means the world to me, and I think many of you know that I’ve recently, been diagnosed with two separate cancers; so it means a special thing to me, because now, I have a total of seven disabilities. Making me my own cross-disability movement. [LAUGHTER] [CHEERS AND APPLAUSE].

>> Marca Bristo: I say that in way of qualifying, because my husband, who’s here, my wonderful husband, who has been with me, behind the scenes, advisor, every step of the way — thank you, honey! Whispered to me, before we started I’m on some medications that are narcotic, and they alter me a little, and so my reasonable accommodation, is that you guys take that into account. As I give this speech. And — and then the second thing is, I wasn’t sure I was going to be here until, like, the day before yesterday; and so I also wasn’t sure, but I was supposed to make remarks. So to my tablemates at lunch, excuse me, for sitting there, jotting down a few notes. Before I say anything else, I would like to acknowledge, my colleagues, who are in the audience here. And say to you… the people united, will never be defeated. [CHEERS AND APPLAUSE] I respect your signs, I respect your protests. And I hope that, and trust that, my NCIL Family, will deliver upon the promises that they have made. [CHEERS AND APPLAUSE].

>> When I look around the room here today, I can remember when the first ten centers for independent living, sat in a hotel, not too far away from here, the feds pulled us together to start talking about how they would measure our outcomes. And we all looked at each other, Max, being one of them and said, “Outcomes? We don’t even know what we’re doing yet!” [LAUGHTER]

>> So we pushed them off, successfully. Marca Bristo: And sent them in another room, so that we could have time, to have that peer-to-peer exchange. That we were also thirsty for. What are you doing in your center? How are you delivering peer support? What — do you have a personal assistant program in your state? How does it operate? All those really basic things. And at the time, some of the centers for independent living, were administered through the state’ s Voc rehab agency, so you had a VR agency here and there would be a door on it that said “Center for Independent Living”, and there wasn’t consumer meaningful consumer involvement — and that really set off — those two things, the thirst, for us to come together to help each other grow; and the recognition that the Federal Government, didn’t really understand what we were doing. And our need, to push back, started from the very beginning, and that, eventually, became the national council on independent living. And it is true that Max — that we did talk to Max, about — we didn’t need to talk to Max, max understood that it was time for him to step aside but I want to tell you a little piece of NCIL history in the election immediately following max, Sharon, many of you might remember this wonderful, fierce advocate. The night before, the NCIL election, that year. Somewhere around ’85, convened a group of women — she’s passed notes around, please come to my suite at 7:00 tonight. And we didn’t know what she had up her sleeve, but we showed up. And Sharon’s vision, was to run a woman’s slate, because up until then, the guys had been running the show, no offense to my male friends in this room, who I love and respect; but women had been behind the scenes doing a lot of the work. And Sharon had some guts to do that and the room sat there and agreed with her immediately. And they looked around the room, and said, “Okay, who are we going to run as president?” And a lot of the eyes turned on me, and, of course, I said no, no, no. I’m — it’s bigger than me, No. 1. And the pressure was on. And they said to me, well, what would it take for you to run? And I said, “I would need help. I would need some kind of staff”. Well, either fortunately or unfortunately, for me, right next to me, was the state of Illinois’s vocational rehab director, a wonderful Republican disabled woman, appointed by our governor. And she leaned over to me and said, “How much money do you need?” And I said, “$10,000.” Part-time, and she said, “Done” well, she called my bluff, right? So we, then, put together a woman’s slate. And went out the next day, and really surprised, the two male candidates who were running against each other. And we prevailed. And I share that little bit of NCIL history, and I could give you so many examples, one other little one early on, when the blindness community, within NCIL, came forward and just laid down the marker and said, “You’ve done nothing to make your materials accessible to us.” And they walked out. And, NCIL, took that seriously, and began the process, long before, other nonblindness organizations did, to put in place a policy for reasonable accommodation not just for that disability; but for others. Marca Bristo: (Continuing) I understand this award is to me on a personal level for my lifetime achievement; however, I wouldn’t be here, if it weren’t for the incredible staff, and board, and the community in the city of Chicago, who have really done the hard work. Many of you know this, that you get the credit, when they really do the heavy lifting. So I don’t know who is here, from Access Living, but I would like you to acknowledge yourselves, if you’re here, just raise your hands. Or something. [APPLAUSE]

>> Marca Bristo: Thank you, thank you. They — they push — thank you, guys! — they pushed me and hold me accountable in ways that I’m deeply-grateful for; and that no others have quite the impact. And they have held me accountable, to the vision and belief system of NCIL. Since the day I started. All of us, yesterday, all of you — this was the second — no, the third, NCIL march that I missed. But I do want to say something about the first NCIL march, because you may not know this. It was right before the ADA — or during the ADA, and we had hit a real roadblock. We weren’t able to get the process out of Committee. And Pat wright called us up. She knew NCIL was in town and she said, “We need you to come over here and put some pressure on”. And it was something like 10:00 at night. I don’t exactly remember. But the next day, we came forward, got — I think, the Executive Committee together. And I said, “I think we need to cancel the Conference”. We had all the speakers there, by the way,. And have a March, to Capitol Hill. And to the White House. So they put out the call, to the D.C. advocates who joined us; the plan was to have it be a — a night vigil by candlelight. So, it rained. [LAUGHTER]

>> So the candles went out, but we didn’t, we fought on, we got to the Congress, and made our voice heard there; and then we got to the White House. And apparently, you know, we’re now at the point, where it’s time for everybody to go home. It was the first march that I had kind of coordinated, and led. And…. I didn’t know how to end it. You know, what do you say to people, okay, go home now? That didn’t feel right… So I took a little lesson from the ADAPT playbook, which was to use some street theater, and I went to the telephone, at the guard’s booth — there was a phone there — and I picked up the phone and said, “I would like to speak to the president”. Well, the crowd just went crazy, you know, like, clapping and yelling and everything. And the — the person said, “Who are you?” And I told them, and they put me on hold and when I told the group, they put me on hold, they went crazy again. This happened three times, come back to the line, and who are you again, so I kept telling them, finally the voice switched from a female voice to a male voice, and this person said, “9 of you, can come to the Roosevelt Room tomorrow”. So I don’t know, where they got 9, [CHEERS AND APPLAUSE].

>> Marca Bristo: As we left the march, the security guard came over to me and said, “Who are you?” And I told him, and he said, “I’ve worked here for 12 years, and the only other action that’s gotten, a White House meeting, was the air traffic controllers so congratulations to you! I don’t know what your secret sauce is, but keep it up!” [CHEERS AND APPLAUSE].

>> Marca Bristo: So that was — that was NCIL then. And then I just want to say that, this award is much more personal to me. Because I know how every one of you toil in the streets every day. All you have to do is listen, to the many wonderful awardees, to get just a taste of the kind of local impact all of you are having. There’s no real way, to put it into words. But I know, from my own experience, that were it not for the Independent Living Movement, we would not have the ADA. With — were it not for the Independent Living Movement, we would not be seeing the ADA’s vision, realized. And trust me: It’s long from being done. This morning, I was walking through the lobby, And this gentleman was waiting to talk to me And he waved to me like this and — this is what I mean about our work being personal. I looked at his name tag, and immediately both of us lit up, his name was Rashad Bristo Where are you, my brother from another mother! [LAUGHTER]

>> Marca Bristo: Rashad and I met on Facebook, I don’t know about four five years ago, a while? And we don’t really know each other, I know his story, he knows my story, from our Facebook research. But it was really interesting, to me, that this African-American from the South, and myself, a good old — you know, New England, and East Coast white girl — had the same last name. So we became sort of distant friends on Facebook, and he came to me and said, “I asked someone if you were here, and they said that they had seen you and I made it my mission, to not leave here until I spoke to you”. And I want to tell you how much that meant to me but then he went on to tell me his story. He was a policeman, and had an accident, I think, Rashad, in any case he lost his arm, and the police department was about to terminate him from his job. And if — I hope I get this right — the day or the day before, that that was to occur, he showed up, and there was this crowd of people, with the letters ADA. ADA. [CHEERS AND APPLAUSE].

>> Marca Bristo: And in that moment, he didn’t know there was an ADA. No, he didn’t, and he didn’t know that there was a Movement. And he didn’t see his issue as something other than his issue. And all of a sudden, this world opened to him. In a way, that I believe, it’s happened to so many of us. We found community here. And we found our power, because of our — our voice. (A pause) I said that I — that I wanted to address or acknowledge the people who are holding up the signs. During that very first March in Washington, and every march — well, maybe it wasn’t the first one but shortly thereafter, every march since then, we marched behind the manor that Justin and Yoshiko dark created that says injustice anywhere, is a threat to justice everywhere. [CHEERS AND APPLAUSE].

>> Marca Bristo: And I would just like a minute for you-all to let that settle in, in the context of the conversation, and tension that is in the organization and in the room as it relates to racism, within the Disability Community. . We know that, viserally. We know what it feels like, to be excluded. Stigmatized. Institutionalized. Locked up. And, therefore, I think, we know, how wrong it is, to see what’s being done, to people who are down at the Border. Who are simply striving to protect their families. To come to this country, which is that up until now, a beacon on the Hill for democracy. They are coming here, because of that belief. Right? And the journey to address racism, is also a very personal thing. Everybody’s going to go through it in their own way. But I — I know for me, it’s — it started, honestly, by denying it. That was my first reaction, of course, I’m not! This is a lifetime journey, it’s not something for me that’s going to be done, because of a couple of trainings. Or done because my staff have brought yet another issue to our attention. It’s something that each individual has to go through, on their own. But I feel, that for the… not just the strength, but the — the very existence of NCIL, and the Independent Living Movement, everybody in this room — white, black, brown — we all have to go through that journey. In some manner. And not sweep it under the rug, but look for a way, to step forward to acknowledge whatever our own part is. And… be the change we want to see in the world. Human rights and the struggle for human rights is not a zero-sum game. When one person wins, others don’t lose. And in the opposite when one loses in some way, we all lose. FROM THE FLOOR: Yes! [APPLAUSE]

>> And the — the white leaders who are in the room, have a responsibility, I believe, to — to listen, to go back home to our respective centers for independent living; and start the process, or continue the process, wherever you are. And I don’t just mean to listen: I mean to listen and hear, you won’t like everything you hear, and you may not even agree with it. Right? But you need to listen, and hear it. Think of the times, we’ve talked about ableism. To nondisabled people. And they deny it or say things like, “Oh, I never thought of it that way.” Part of our journey, has been to reeducate the world, as to what stigma looks and feels like. It takes all shapes and forms. But in the same way, that stigma, takes shapes and forms, so does the backlash against our forward progress. There is an incredible feminist author. By the name of Susan Felutti who wrote a book that, talks about the myths of the backlash. And I won’t go into the detail, but one of the myths is to bury your head in the sand and pretend it goes away, another is to blame the victim. Another and probably the biggest one is to divide and conquer. I just want to say, that, there is no time right now, in my — no time, more important, than right now, in my entire life, and I know you-all know this, I’ve never seen our world, so divided by racism, homophobia. And all the other isms. And make no mistake about it: There is an active effort, on the part of people, who would like to see our movements fail, and us go back home or back into institutions. Or wherever we came from. Another country? They see our forward progress, as a threat. And we cannot let them win. FROM THE FLOOR: No.

>> Marca Bristo: We cannot let them win! [CHEERS AND APPLAUSE].

>> Marca Bristo: They will win, and we will lose. If we don’t address this issue. And I — I want to say, to my colleagues at NCIL, I know NCIL has already been working on this issue, for a while. It’s not new. It’s not new. There’s an acknowledgment that there are problems within NCIL; and NCIL has begun to do some things about it. But I will also say, it’s not enough. And I believe, that — I really do believe this, I’m looking at Kelly right here — that Kelly knows this. Sarah knows this. And I believe that we can elevate our expectations. And demand, from NCIL, what the people holding these signs are demanding from all of us. So, I guess in closing: I just want to remember Justin, who — and every one of his speeches, would remind us that to implore us, to lead our individual lives, revolution of empowerment, each person, at a time, taking up that challenge. He called upon us to be soldiers, in the war for democracy. And he told us, he believed in us. In ways — that most people don’t even acknowledge. And — and the belief, I believe, came from — because the visceral sense of discrimination, is so present in so much of our life, as people with disabilities, we unite around that. Without regard for all of our other differences. I was in — a meeting of the Vatican many years ago, and there were 6,000 people, disabled people and nondisabled people in this meeting. I got there late. I was sitting up in the very top of this huge auditorium. And dick Thornburgh, the former Attorney General was there, it was right after the ADA was passed. All the other speeches had been real charity-oriented about the responsibility of the Church, to take care of people, with disabilities. So it’s pretty far into this conference, when dick Thornburgh got up and started to talk about discrimination in the Americans with Disabilities Act. The first time, he used the word “discrimination” and “prejudice against people with disabilities”, there was this thunder of applause, and I’m, like, what’s going on? And I look down in the corner and there were probably 4, or 500 people, in the corner, going like this (indicating). It — it was stunning, and then, these were people from all over the world. And then I looked across to my — the area where I was. And there was a table, of several disabled men, sitting there…. and I went over to them and we quickly realized we didn’t know each other’s language? Right, we did not know each other’s language, so we couldn’t really talk. And there was that moment of frustration, and one of them says Judy Heumann? EdRoberts? And do you know we didn’t need to say another word, because we understood that the language, of disability and discrimination truly knows no boundaries. Look at what our colleagues here from Japan, who told us, the same story that we see here, is in their country. So…. I’m — I’m not done with my work. And it includes the work that I’ve been talking to you about. I — I know and I’m confident and when I go back to the office, I’ll have — a team of people, that are ready to roll up their sleeves, and try to figure out, what’s the next thing, that we need to do. So…. I guess I’m just leaving you with the second thing that Justin always used to say: But put into the context of this difficult period, we’re going through — and heed his words in that context…. when he said, ” Lead on. “Lead on.” Colleagues, I love you. Together, we have overcome, together, we shall overcome. Thank you. (1:43:35 p.m., Marca Bristo) [standing ovation.]

SARAH LAUNDERVILLE: Thank you, Marca! So I want to acknowledge the folks who are here with posters, for a couple of reasons. One, I think, that their message is really powerful.

Especially in this time. And secondly, I want to acknowledge that not everybody can read those posters. Is there anyone who would like to speak from this group? No? Okay.

So, go ahead.

>> I would be happy to support, if anybody would like me to read posters. If you could show me your posters one at a time, I would be glad to read them for access. I’m going to be going from my right to left. “America is the land of immigrants”. Do you want to read the next one?

>> The second sign is, “Know me, not my skin!”

>> We have one more sign that ended up in the corner over here to my right. “Libertad and Justicia, Not Promises. #DisabilitySolidarity.”

This sign says, “Never Again #FreeOurPeople”.

>> “To all disability organizations, disabled people of color demand change. Not words and diversity quote plans or statements! #Intersectionality!”

>> “When we demand liberation, we demand liberation for all. #DisabilitySolidarity.”

>> “No one is free, until everyone is free. Disability leadership must include disabled people of color!”


>> “We are tired of listening sessions. We demand action!”

>> “Disabled black and indigenous people of color demand action, not just words”. Sorry I can’t see here, “#DisabilitySolidarity!”

>> Thank you so much.

SARAH LAUNDERVILLE: (Continuing) We appreciate, this ‑‑ Do you have something? I couldn’t tell if Kelly ‑‑ …. Coming up, Kelly? Sorry, I’m trying to figure out the logistics.

>> I appreciate all of you. I see all of you, who are here today with these posters, and I appreciate that you’re bringing this forward to our community. So thank you.

Yes? No, Kelly? Sorry, I have ‑‑ I’m filling in, so, so sorry about the logistics piece. (Sarah Launderville).

KELLY: (Approaching the stage) (confers with Sarah Launderville).

(A pause).

SARAH LAUNDERVILLE: (Reapproaching podium) Sorry about that. I was seeing if there was someone else that was supposed to speak today. I apologize. This ends our program for today, I want to thank all of you for being here.

I want to thank our folks who came out, and put themselves on the line, and shared with us what they want to see in terms of action and change as we move forward.

I also want to thank our sponsors for this event, Centene Corporation, and Anthem and we’re going to take a break for a moment. I want to invite everyone back to our Annual Meeting that’s happening at 2:30 today, where there will be more opportunity to share about where you’re coming from in this movement. Thank you so much for being here today!

FROM THE FLOOR: Mic check.

>> We are here!

>> To speak about.

>> To speak about discriminatory, violent treatment of disabled immigrants, undocumented folks and people of color! And our intersections! We demand action!

>> We demand action! Not just words!

>> Not just words.

>> All disability organizations!

>> All disability organizations! All disability organizations!

>> All disability organizations! Including outside the CIL network!

>> Must be held accountable!

>> Must be held accountable.

>> For their racism. For their racism. Xenophobia! Homophobia! And ableism!

>> And ableism!

(1:50:34 p.m.).