Education, Advocacy, Employment: Lessons for Centering People with Disabilities
“To truly build equity, we must center those most affected.”
This is a common refrain we hear in philanthropy and in other efforts to serve historically marginalized and harmed populations, but is too often a value that goes only partially fulfilled. Over the past two years working toward a more equitable COVID recovery for California’s communities hit hardest by the pandemic, we have seen that living up to this call to action, in the end, is quite simple. Whether through local government education, statewide advocacy, or longer-term workforce development, equitable partnership comes down to listening and trust.
One group in particular is often left out of conversations about supporting California’s most vulnerable, though the population transcends all backgrounds. “I constantly remind folks that the reality is that people with disabilities are everywhere, across class, race, ethnicity, gender, sexual orientation, and economic status,” said Larry Wanger, Executive Director of the Dayle McIntosh Center (DMC), a cross-disability agency based in Orange County. Understanding that this vulnerable community is not monolithic and requires intentional, customized approaches, TTH prioritized funding organizations that worked with a diverse range of people with disabilities across the state.
Below are three stories that show how we can better support this population at the local level, state level, and through economic development.
When vaccines became available, Larry and his organization advocated at county and local levels to make sure that people with disabilities were explicitly represented and prioritized, as they often have secondary health conditions that put them at greater risk from the virus.
And thanks to the tireless efforts of many disability advocates like Larry, people with disabilities were elevated as a priority population to reach early on in the vaccine rollout. But in the rush to get vaccinations up and running, many states and counties didn’t involve disability advocates in the decisions about distribution and access, leading to missteps and precious time spent changing things retroactively or filling in gaps.
In Orange County, the local government quickly set up a website and app to enable residents to schedule vaccine appointments. Unfortunately, it was the only option to register one’s eligibility and get an appointment, and was difficult to access for the vulnerable aging community and people with disabilities who were first in line. “Despite common misconceptions, the disability community often doesn’t have the technology or the tools to access these kinds of services,” explained Larry.
The DMC team spent weeks calling thousands of people to help them get signed up for vaccinations, laboriously walking them through each step of the website process, before other methods of scheduling became available. The site was also built without considering the technical standards needed to accommodate a screen reader, a software that “reads” the text on a screen out loud, used by people who are blind and people with visual disabilities. The design of the site prevented screen readers from working, effectively prohibiting blind people and people with low vision from accessing needed services, and requiring valuable time to rework.
Accessibility to and at the vaccine sites was another challenge the DMC partnered with the county to address, including getting a dedicated drive-through lane for accessible vehicles set up in the large vaccination clinic at Disneyland. And after learning of the challenges that deaf people and people with hearing loss faced when showing up to their appointments, Larry and his team urged the county to bring in sign language interpreters and host dedicated vaccine clinics for people who used sign language support.
“I’m very proud of the work we did, because we know it filled a lot of gaps and saved a lot of lives,” said Larry. “And it was important to work with the county to educate them on the needs of our community, and demonstrate that one size doesn’t fit all.”
For Christina Mills and her team at the California Foundation for Independent Living Centers (CFILC), the state’s response to the pandemic proved that centering the needs of people with disabilities was possible with enough intention and trust.
As a membership association serving 28 Independent Living Centers across the state that are run by and for people with disabilities, the CFILC was tapped to serve as a representative on the state vaccine advisory committee to help plan the vaccine rollout. Through those meetings, Christina was able to advocate for the needs of people with disabilities, as well as the elderly and people with preexisting conditions, and ensure they were designed into the strategies from the beginning.
“Elevating disability to where people could really understand why our voice was such a key element and why our population must be included in the prioritization was incredible to see,” said Christina. One major win was in the development of the My Turn website, the statewide vaccination appointment online portal. Christina and the other disability advocates in the committee made sure the website was not only accessible for people with different types of disabilities to navigate it, such as designing it for screen readers, but they also included two important questions: 1. Do you need a ride to your vaccine appointment? and 2. Do you need to receive your vaccination at home? These questions were critical in addressing two of the major challenges that people with disabilities face, as this population is often very low-income without easy access to transportation, and because the most vulnerable of the community are either home-bound or at high risk of the virus’ worst effects and must limit all exposure.
“Unfortunately, we as disabled people have to prove ourselves and our needs in almost every situation, even for folks with visible disabilities like me, who use a wheelchair,” explained Christina. “We get put through unnecessary hoops all the time so it was actually quite radical that the state just agreed to add this very easy, accessible mechanism for people to say whether they need these supports.”
With this accessibility win implemented, it was time to ensure that the message was reaching the people with disabilities it could most help. “One of the things that I had always wanted to do, but never had a funder willing to partner with us on, is a major marketing campaign that really reaches our community, which is typically quite hard to reach,” said Christina.
So when TTH reached out to Christina and her team, they were thrilled to find a partner that not only provided truly flexible funding, but really trusted in their expertise. The CFILC team knew that people with disabilities were often substantially low-income and did not necessarily have good digital access, so they prioritized bus ads, billboards and traditional news advertisements.
With data-driven placements and smart design, they used the marketing campaign to directly speak to and reach the population they were trying to serve. “We embrace who we are, so we made sure our ads had images of disabled people and respectful disability language, not terms like differently abled or special needs. We want people to be proud and to know they can reach out to us because we get it,” explained Christina.
The trust and openness of the partnership with TTH also empowered Christina and her team to shift approaches and staff time when they realized that the people they served preferred phone calls via the advertised free number, rather than the primary option of text messages. An initial call to set up vaccine appointments would easily turn into 30 to 60 minute conversations as the CFILC introduced the caller to a wide array of resources for people with disabilities that they may never have known existed. “There were so many different connections we helped make,” said Christina. “Because it was really the first time we were able to reach this many people, and they had no idea what resources were available.”
Despite the challenges and struggles of the pandemic, for Christina and her team, it was also a time of expanding what was possible when decision makers, funders, and community advocates came together to do what was needed in the face of crisis. She and her fellow disability advocates told the state what supports were necessary for online vaccination appointments and their expertise was trusted. She and her team knew they needed to create a large-scale marketing campaign, and with TTH’s flexible funding they were able to reach a viewership of over 1 million people. After witnessing the success of these partnerships, Christina is hopeful for the future. “The biggest takeaway we all learned from this is that when you bring the right stakeholders to the table from the beginning, we can truly create better, more inclusive approaches,” said Christina.
Better representing the people we want to serve might start in the design process, but integrating people with lived experience should happen in every step of the work and for the long-term.
One partnership in Fresno County that emerged through COVID response work serves as a great example of how governments can better partner with and hire that expertise internally.
In the U.S., about 70% of people who are blind or low-vision are unemployed, a number that has nothing to do with how many want to work. Executive Director of Valley Center for the Blind (VCB), Shellena Heber, knew this all too well. The organization’s many programs provide specialized training and education to empower people who are blind or low-vision to achieve independence and pursue employment, including through IT skills. But their job seekers kept getting turned down. To better understand the barriers, Shellena and her team conducted a survey of businesses in Fresno, asking if they thought people who are blind or low-vision should have the opportunity to work if they wish to, to which 100% of respondents answered ‘Yes’. But when asked if there was a job at their place of business that would be accessible or appropriate for a person who is blind or low-vision, 90% of those same respondents answered ‘No’.
So when Shellena and her team were invited to join Fresno County’s Disability Equity Project, one of three county-wide groups formed to reach populations most impacted by COVID, they jumped on the opportunity to help people with disabilities through a workforce development approach.
“Early on, we knew that contract tracing and case investigation was a big need and that the systems being used could be made accessible for a person who uses a screen reader, so that was our first big chance,” said Shellena. VCB negotiated with the county to use their contract to hire 12 people who are blind or have low-vision onto the project, and as her team excelled, the partnership expanded.
“We’ve found great champions in the county who wanted to keep pursuing what we could do next together,” said Shellena. “Our success in the COVID contract, which was meaningful, difficult work, helped them reconsider their own employment practices and see that they could partner with us to really increase their capacity and invest in people from a community in need.”
Shellena credits TTH as an important catalyst in elevating the organization as a major resource in Fresno County. “It’s very challenging to reach people who are blind or have low vision, there isn’t a list you can use to call people, so we knew we needed to reach the population really broadly and get the word out,’ said Shellena. With TTH’s flexible funds, VCB was able to launch a large-scale community awareness and marketing campaign throughout the county to promote COVID support as well as the organization itself, through TV commercials, billboards and Facebook ad campaigns. It worked, just as Shellena knew it would. “Before we would get maybe two or three new client inquiries a week, but we knew the population was out there,’ said Shellena. “Now we’re getting three requests minimum everyday.” And the success of the awareness campaign helped bolster VCB’s reputation and standing with other funders, like the county.
Earlier this year, VCB and Fresno County solidified their partnership with a 5 year contract to provide staffing for county services, including at local call centers, and together they are continuing to find more ways to employ VCB’s community members. The county also agreed to keep funding a toll-free hotline that VCB and other members of the Disability Equity Project created specifically for people with disabilities to call for support and services. The line has been continuously staffed by VCB team members, all people who are blind or low-vision who have personally experienced the challenges of navigating disability resources and are able to provide culturally competent help.
“In this age of technology, any county could do something like this and there’s no reason not to,” said Shellena. “I encourage any local government to invest in trusted messengers, in people with personal experience in the populations you’re trying to reach, to best serve our communities.”
We are proud to support these incredible organizations that are advocating for their communities, representing their interests, and breaking down barriers. We’re hopeful that their stories encourage governments and funders to truly center community voices and experiences in their efforts. By bringing leaders with lived experiences to the table from the beginning, trusting in their knowledge and expertise, and investing in their capacity to contribute, we can truly build a more equitable future.