How to Amplify the Leadership of Persons with Disabilities.

As we mark the International Day of Persons with Disabilities 2024, it is time to confront the paradox: the very United Nations founded by a leader with disability, Franklin D. Roosevelt, often downplayed his condition while championing inclusion. Today, we explore how far we have come, the hurdles still in place, and how technology, transparency, and a shift in mindsets are paving the way for true leadership by persons with disabilities.

The International Day of Persons with Disabilities came into being in 1992. This year’s theme focuses on amplifying the leadership of persons with disabilities. However, it is important to note that the United Nations, which established this observance through a resolution by the United Nations General Assembly, was created by highlighting the leadership of its founder while downplaying the fact that he had a disability.

The concept of the United Nations, envisioned by President Franklin D. Roosevelt, a paraplegic, was brought to fruition by his successor, President Harry S. Truman, in 1945. Roosevelt passed away in April 1945, leaving Truman to lead until the end of World War II. The UN was officially established on October 24, 1945.

Despite his disability, Roosevelt built America under the ‘New Deal’, a period marked by infrastructure developments, to counter the devastating effects of the Great Depression. Very few people in America knew of his condition at the time. Beyond legal guardrails about the President’s condition and his health in general, he had a gentleman’s agreement with the media not to show his images or video in a wheelchair or with the calipers.

He revealed this side of himself only a few months before his death, showing it to soldiers who had been wounded in war as a display of solidarity. It was also a subtle message to them that there is life after acquiring a disability, something he experienced himself after contracting polio in his 30s.

The Token Trap

Although there are some notable examples of leadership among individuals with disabilities in modern society—such as Stephen Hawking, a prominent figure in cosmology, and Judy Heumann, a powerful advocate for disability rights—the truth is that disability leadership often faces challenges like breadcrumbing, greenwashing, and gatekeeping. These issues undermine the advancement of disability inclusion today.

Breadcrumbing happens when individuals with disabilities occupy minimal leadership roles that lack the authority or ability to influence decisions. This practice reduces them to mere token figures, serving to placate those in power, rather than genuinely involving them in decision-making processes. And so, while persons with disabilities are at the ‘table’ as is the clamour, the status quo remains as far as changes go.

Greenwashing, or accessibility washing, is when organizations, especially corporations, use disability as a marketing tool, without proper structures and intention to preach, practice and sustain disability inclusion. Cases are rife in developing countries, where a company will use persons with disabilities to show they are disability-inclusive, only to leave them after the photos are taken.

Previously done as Corporate Social Responsibility, it has gone a notch higher with the introduction of the Environmental, Social, and Governance (ESG) metrics. However, there is still a lack of robust frameworks to monitor effectively Diversity, Equity, and Inclusion initiatives. This contrasts with environmental matters, where clear methodologies exist for calculating carbon emissions, along with strict regulations to ensure compliance.

This led to the Diesel Gate Scandal involving Volkswagen and Ford, as well as the brief shutdown of the Defender sub-brand of Land Rover after it failed the European Union emission standards. With disability, it is a matter of endless talk shop activities with nothing to show for it. Gatekeeping is primarily a generational issue, where the younger generation perceives that the older generation is withholding opportunities, leading to stagnation. In the social spheres gatekeeping is when information is relayed to the chosen few to the disadvantage of many.

Breaking Barriers

However, it is not all doom and gloom though. As a result of several non-activist factors, disability inclusion is taking centre stage, and everyone stands to benefit. To start with, there is technology, largely from a market penetration goal point. Technology companies are integrating features tailored to the persons with disabilities, to capture the market of persons with disabilities (ChatGPT collaboration with Be My Eyes).

Beyond marketing, the lifetime value of a person with a disability is higher, as they tend to use a product or service more than persons without disabilities. An example of this would be LEGO. The world’s largest toy maker has a program, through the LEGO Foundation, to create accessible bricks for visually impaired children (braille bricks), allowing them to learn alongside their peers without disabilities, making education fun and inclusive.

From a business standpoint, this becomes the first touch point of the child with the LEGO brand, before becoming an AFOL (adult fan of LEGO) past childhood. Talk of loyalty.

With the advent of AI, persons with disabilities have an opportunity to empower themselves and tell the stories only they can. With AI tools, one can use them to improve their skills and craft, increasing autonomy professionally and personally. The evolution of industries like media, influenced by AI, highlights authenticity as a key differentiating factor.

This shift emphasizes the importance of sharing more stories about disabilities and giving them the attention they deserve. In the past, disability narratives often had to be polished and refined for resources to reach those in need.

Speaking of resources, the emergence of blockchain and Decentralized Autonomous Organizations means resources will be community-owned and controlled. Therefore, there will be no more gatekeeping. With decentralized platforms, it is more of emergent leadership, rather than a single figure or group of people calling the shots. This is more or less like a crowdfunding platform, where it is the people who make the decisions, not an entity.

Beyond resources, the other advantage is efficiency and belonging, as everyone has a role to play, unlike the present Animal Farm situation. So, while this emergent leadership might not have a large financial war chest to make things more, everyone moves the needle bit by bit, which is what matters.

I believe that is the only way we can amplify leadership of persons with disabilities sustainably, in the days to come. Until then, he who pays the piper calls the tune.