“He who passively accepts evil is as much involved in it as he who helps to perpetrate it. He who accepts evil without protesting against it is really cooperating with it.” – The Rev. Dr. Martin Luther King, Jr.
Do Deafblind People Matter?
Fourteen years ago this month, Congress was considering enacting a landmark civil rights law, the 21st Century Communications and Video Accessibility Act. But it initially decided to leave out deafblind people, prompting me to spring into action to lead a grassroots movement to ensure deafblind people’s inclusion. When I stand up to the evil of exclusion, I am not doing this solely for the good of the deafblind community, but for disabled people as a whole, our aging grandparents or parents who may experience disability in old age, and wounded veterans who valiantly fought to defend life and liberty.
Since 1984, we celebrated the last week of June as Deafblind Awareness Week. Despite its official proclamation by President Ronald Reagan in honor of Helen Keller’s life and to increase awareness of deafblind people, many people and institutions still act like either Keller was the only deafblind person who ever lived, or deafblind people do not matter. The benefits of social progress in the rest of society since the 1980s, aided chiefly by rapid advances in technology, largely did not translate into meaningful improvement in the quality of life for deafblind people. Some of the most influential corporations, such as tech giants Microsoft and Apple, have shown a growing interest in including deafblind people; others, like Google, still resist doing the same.
How Poor Leadership Undermines Progress
This blog does not delve into the myriad ways society as a whole continues to fail deafblind people. Instead, I want to shine a spotlight on one of the biggest obstacles to advancing disability justice: nonprofit organizations and their leaders entrusted with public funding to improve disabled people’s lives. Here I will focus specifically on San Francisco-based LightHouse for the Blind and Visually Impaired, which receives the largest share of federal funding meant to enable deafblind people across the country to access communications technology. One of the largest and most powerful charity organizations for the blind in the United States, LightHouse’s executive team is currently led by Sharon Giovinazzo and its Board of Directors is helmed by Jennison M. Asuncion. Ironically, Asuncion is the co-founder of Global Accessibility Awareness Day.
Impactful change requires good leaders, and good leaders wield power not to advance their self-interest but to bring about positive change. “Power at its best is love implementing the demands of justice, and justice at its best is power correcting everything that stands against love,” to quote Martin Luther King, Jr. America’s history is replete with stories of great leaders who put people ahead of themselves. Keller was one of them: she was not only a disability-rights activist, she was also a champion for women’s rights, and the co-founder of the American Civil Liberties Union. Keller embodies what it means to lead with love and empathy, helping to positively influence larger social issues of the 20th century.
Advancing Disability Justice Begins with Respect in the Workplace
When I was helping to administer funding from the National Deaf-Blind Equipment Distribution Program (NDBEDP), which was created by the aforementioned 2010 law, through LightHouse, I witnessed firsthand how nonprofit leaders’ decisions can have a significant impact on people’s lives. First, ableism abounds at the top, where blind, deaf, and deafblind people are routinely infantilized. These individuals’ years of experience and expertise generally did not seem to matter, unless they served the power-driven interests of the leaders.
Disrespecting workers and depriving them of autonomy not only robs them of professional growth but also greatly diminishes their effectiveness in helping the people the organization serves. For example, Brandon Cox, the current Chief Operating Officer whom Giovinazzo almost always deferred my concerns to, has a documented tendency to mistreat workers, especially women. Indeed, since Cox hired Lisa Lee, the current Vice President of their so-called “People and Culture” department (first created in early 2021 puportedly in honor of Black History Month) in September 2022, there was a distinct shift toward a more hostile workplace culture.
The problematic organizational culture of LightHouse is the reason that blind workers in September 2023 chose to form a union. But even the union members remain fearful of potential repercussions for speaking out against questionable policies and practices that hurt the organization itself. But silence is what perpetuates the status quo, and both workers and community members suffer.
In recent months, the media shone light on several high-profile examples of national organizations whose leaders were accused of promoting a hostile work environment, such as the Federal Deposit Insurance Corporation (FDIC) and Miss USA. But it seems like similar scrutiny is rarely if ever brought to nonprofits serving the blind, deaf, or deafblind. We need a Yelp for disability justice, where charities like LightHouse are properly held accountable since there is often a discordance between what information is presented to the public and what goes internally. Moreover, LightHouse is exempt from taxation, but according to public records, the CEO’s 2022 salary was $334,723; that’s more than what the Vice President of the United States makes, and it should therefore come with a greater sense of responsibility.
The continued presence of Shannon Wright at LightHouse is emblematic of bad leadership. She first began her contractual relationship with LightHouse in 2021, overseeing the initial NDBEDP data review. Many people, myself included, reported a pattern of harassing or intimidating behavior that demoralized workers and interfered with their ability to provide better services. Given Wright’s position and close association with Cox, complaints brought to the attention of LightHouse’s HR under the charge of Lee were ignored. It should not come as a surprise, then, if such complaints are not entered into the record. Indeed, some employees faced retaliation for doing so, often instigated by Wright using baseless allegations of falsifying records or perceived poor performance. Her focus on data notwithstanding, Wright’s habit of usurping managers’ usual responsibilities inevitably sowed confusion and anxiety among workers. If LightHouse’s mission is to empower blind people to live with independence and dignity, Wright should have been removed. Integrity and empathy are among the essential qualities of good leaders.
FDR once said, “The only thing we have to fear is fear itself.” In the context of employment, it is so much easier said than done. In California, workers have the right to discuss working conditions without fear of retribution. Yet, there’s palpable fear among LightHouse employees under the current leadership. For most of them, it’s a choice between homelessness if they exercise their rights and financial independence if they keep quiet. Many also have little human mouths to feed, and some have ailing relatives who depend on the employees’ income for survival. There’s also the fear of being blacklisted or seen as a liability by prospective employers if they speak up. Thus, protesting is not an option for the vast majority of workers, especially blind or deaf people who already face substantial hurdles in being gainfully employed.
When FDIC employees complained of a toxic workplace, an independent third party, a law firm, was hired to investigate the allegations. In contrast, when about a dozen women complained of a toxic workplace in 2022, the LightHouse Board hired ADP to conduct the investigation. According to its website, ADP is a “payroll and HR solutions” company with whom LightHouse was doing business. Lee was working as an ADP consultant shortly before her hiring. The impartiality of such an investigation is thus in question.
In a recent survey conducted by Businessolver, more CEOs than employees said their workplace is toxic. If this is true, one wonders why those in charge cannot address the toxicity of company culture. According to the article, which cites the chief strategy officer of Businessolver, Rae Shanahan, “toxicity within an organization is about fear and that moves to reduce those feelings must start from the top.” Shanahan notes that empathy is possibly viewed by executives as a sign of weakness. Perhaps this is true for LightHouse’s leaders; that is, fear is preventing the CEO and the LightHouse Board from effectively addressing the toxicity of the workplace.
Lack of Management Accountability Undermines National Initiatives
As for the NDBEDP, the people who directly provide services mandated by Congress have to contend with the same toxic work culture at Lighthouse. Since Giovinazzo’s hiring in October 2022, job-related accommodations necessary for the timely provision of services to deafblind people were denied, even if the federal fund pays for them. To keep their jobs, the workers were forced to find alternative and less effective solutions, and even tolerate abuse.
Since late 2022, an increasing number of deafblind people have chosen to bring their concerns directly to the Federal Communications Commission’s Disability Rights Office (DRO). To date, the DRO has not done anything substantive, allowing the problems to persist. Most deafblind people communicate best in sign language, and the FCC’s methods for receiving and responding to complaints disadvantage them. Consequently, the DRO’s data does not accurately reflect the severity of the problems with the federal program that is being managed by LightHouse.
But in recent months, it was revealed that one of the DRO’s attorneys, who leads the complaints team, has a personal relationship with current or former LightHouse leaders. He served as one of the panelists for the Holman Prize, which is owned and hosted annually by LightHouse. This creates an obvious conflict of interest that raises the question of whether the DRO can fairly and impartially address deafblind consumers’ complaints regarding the federal program.
But the FCC has already shown that deafblind people’s needs are not a priority. For instance, deafblind people are excluded from its Part 14 rules, requiring mobile communications to be accessible by people with disabilities, despite Congress specifically including deafblind people in the 2010 communications law. In addition, most deafblind people depend on family, friends, or neighbors to make telephone calls because of the difficulty of using today’s telecommunications services.
How We Should Be Honoring Helen Keller’s Life
“Until the great mass of the people shall be filled with the sense of responsibility for each other’s welfare, social justice can never be attained.” – Helen Keller
We must stop pretending that everyone is entitled to life, liberty, and the pursuit of happiness. We have to live by what we preach. If deafblind people matter, then our actions need to reflect that; meaningless slogans and empty promises say the opposite.
Nonprofit organizations serving disabled people, like LightHouse, should be accountable to their communities and their actions must align with their missions. Workers should be respected through empowerment and empathy, allowing them to make a meaningful difference in the community and beyond; this will require leaders to strive, with courage and integrity, to address structural problems that prevent the creation and maintenance of a safe and respectful workplace.
The business community also has much to gain from including everyone. We increasingly hear how accessibility drives both innovation and growth. But welcoming everyone should not only be about economic benefits; businesses who actively seek to include everyone show the world that every human being has value.
Raising awareness about and including deafblind people in all aspects of society requires charitable organizations, governments, and businesses to work together to empower people and enhance communities. The community should always be involved in shaping policy decisions because there is nothing about it without it. Only then will there be real progress. And that is how we should celebrate Keller’s life.