I have an older brother, age 42. This is not unusual. Approximately 80 percent of Americans have one or more siblings. My brother also has Down syndrome. This is not unique, either. The Centers for Disease Control and Prevention estimates that about 1 in 1,200 people in the United States has Down syndrome. The overall number of adults with physical or intellectual disabilities in this country is 61 million, or nearly 26 percent of all those 18 and older.
What is aberrant is that this large and growing population did not receive formal civil rights until 31 years ago this week, when the Americans With Disabilities Act was signed into law by President George H.W. Bush. My brother was 11 at the time. As with many watershed expansions to civil rights, formal laws are sometimes lagging indicators, codifying an already changed culture. In some cases, however, these laws are ahead of the curve, challenging us to continue the journey toward our higher and better ideals.
Such was the case with disability rights. The Americans With Disabilities Act was propelled by the waning mass institutionalization of people with disabilities, a tragic and barbaric chapter in American history. But the law did not end discrimination against this population. Instead, it inaugurated a struggle that continues today and one in which philanthropy must lead the way.
In my lifetime, our society has made important progress in realizing a vision for a just society that includes people with disabilities. In addition to formalizing access to basic civil rights, the law made more of us begin to recognize that justice is not a zero-sum game. We do not support the inclusion of people with disabilities at the cost of other historically oppressed and marginalized populations. Rather, every act on behalf of a more inclusive society is an act on behalf of all of us.
But the chasm between this idea and its realization sometimes feels unbridgeable. This is where philanthropy has a special role to play. We can invest in the people and the ideas that can bridge the mental gap between our ideals and the structures, institutions, and practices that bring those ideas to life. We have the flexible capital to invest in those whose visions extend just over the horizon and who will guide us on the path toward a different and better future for our democracy.
To date, we at the Doris Duke Charitable Foundation and its associated philanthropies have seen in our own work at least a few ways to begin, as well as places in which we can do better. We believe others in philanthropy must also closely evaluate how they operate and pursue ways to ensure their actions are in line with their intentions.
Start at Home
First, we need to ensure that our own staffs and facilities are truly inclusive. We own and operate two properties: Duke Farms, an environmental stewardship center in New Jersey, and Shangri La, a museum of Islamic art and culture in Hawaii. Accessibility was a priority when both sites opened to the public, and we continue to emphasize access as part of our ongoing modernization of these historic structures and grounds. Most recently, Duke Farms initiated special low sensory stimuli environments for patrons with autism.
It is easy to ask others to change their ways, especially when we are holding the purse strings. But commitment to inclusion must begin at home.
Second, we’ve begun scrutinizing our programs for ways they subtly dissuade people with disabilities from applying, while considering steps we can take to encourage greater inclusion. Several of our flagship programs, including the Doris Duke Conservation Scholars Program and our grant-making programs to support physician scientists now explicitly ask questions about accommodations participants might need and, in appropriate ways, collect information on disability status. This is a small move that sends a big message: inclusion matters. At the same time, it helps people overcome the assumption that they won’t get certain jobs because of their disability.
Third, we strive to support the stories, ideas, and experiences of people with disabilities as an affirmative way to advance our programs. That means ensuring that our efforts to promote greater inclusion in the research sciences are informed by our support for scientists with disabilities. Our investments to promote equity through environmental conservation should be guided by environmentalists and community leaders with disabilities. Our support for artists in the creation and performance of their work should include the visions of artists with disabilities.
One example of such an approach includes our support for Kinetic Light, an ensemble with disabled artists in the lead creative roles. This visionary group undertakes aesthetically accessible work as a form of advocacy. But we recognize that support of such organizations is the beginning of our essential work toward progress, not its conclusion.
It’s important to recognize that there is much that philanthropy cannot do. It cannot, with the stroke of a pen, make the equal rights of people with disabilities the law of the land. It cannot, as the federal government does, spend more than $200 billion every year on programs such as Supplemental Security Income and Social Security Disability Insurance — essential support for people with disabilities.
Advancing Justice
What philanthropy can do is apply its flexibility, insight, and resources to advance the cause of justice for people with disabilities — as it has for people of color, women, and so many others left in the shadows of democracy’s light. In early 2019, the Doris Duke Charitable Foundation joined the Presidents’ Council on Disability Inclusion in Philanthropy as a tangible expression of this commitment — and to hold ourselves accountable. We encourage others to do the same.
I recently came on board at Doris Duke so when writing this essay, I had to ask my colleagues about the work we had undertaken to date to include and support people with disabilities in our programs. Even for me — the brother of a man with a disability and the son of a mother who devoted half of her career to advocating for people with disabilities — asking this question was not second nature.
This is not a reason to feel bad, hang our heads, or treat as hopeless the sometimes overwhelming task of committing ourselves to a pluralistic society in deed, not just in word. It is rather a confession to reassure us that we can all do better and, in the doing, we can all become better.
