I have long identified social justice as a core value. There was never a “moment” of decision or clarity, it’s always been there, an integral part of who I am. Living my values has meant engaging with my whole heart in a multitude of roles – as a donor, an advocate, a volunteer and through various leadership positions as a board member to support organizations that are working to fight for social justice.
My definition of social justice is grounded in the belief that as human beings we are deserving of the right to live our lives to the fullest extent of our ambitions and talents. Sounds pretty good right? Well, this last year has both humbled me and energized me in ways that have shown me just how far I have yet to go in fully understanding the depth and complexity of this ideal.
In my August 2020 blog post. Synchronicity 3.0 I shared the news of my big pivot – leaving the corporate world of public relations and diving headlong into the non-profit space as a Major Grants Officer for Bethesda LC, a national organization in the disability space. Major Grant Officer is simply a fancy sounding title for development – my job is to bring the “big transformational gifts” to the table so that the incredible people doing the actual work of empowering individuals and their families with disabilities can do just that. No money. No mission.
However, I am chagrined to admit that it was not until I became a full-time advocate for individuals with disabilities, working with incredible, generous philanthropic minded individuals, did I come to understand that my world view of social justice had not made the connection between social justice and the disability space. Seriously. I am not kidding. Insert red, embarrassed emoji face here.
For this, I actually had a true “a-ha” moment. In order to explain, I have to confess my addiction to audio books. As a runner, I discovered that I could be entertained, learn something new and get my daily run with the tap of an app, in my case it’s Audible. For one hour every morning I am literally in my flow, no angsty teens, no needy pup, no deadlines, no one tugging at me and no stress! It was during one of these runs that my moment of connection and understanding took place. I had used up my monthly credit and was weeks away from my new allotment when I found myself perusing the section of free downloads. Normally I am not into biographies nor have I had more than a cursory interest in reading about famous families. It was here that I stumbled upon the book, Rosemary, The Hidden Kennedy Daughter by Kate Clifford Larson. Game changer.
I found myself quickly immersed into this well written, historical account of the Kennedy family and their journey with what was then called, “mental retardation” of their first-born daughter, Rosemary Kennedy. The Kennedy family is widely recognized as the force behind sweeping transformation for the disabled community and their families. Their personal experience with ID/DD led them to forge a historic path for all individuals with disabilities and their families. President Kennedy’s sister Rosemary, the eldest daughter of the Kennedy family, was born with developmental issues that could not be overcome, even given the intense focus and incredible financial resources that her family was able to bring to her care.
The tragedy of her story is that she was born at a time when there was no research and no understanding of the capabilities inherent of an individual that did not progress developmentally as a “normal” child. Because of the Kennedy family’s personal experiences, they championed the cause to recognize disabled individuals in mainstream society. This served as a precursor to future landmark civil rights legislation that sparked another important societal shift much later: the Americans with Disabilities (ADA) in 1990.
While listening to Rosemary’s story, I soon learned that the nascent movement for disability rights was in fact a part of the 1960’s social justice movements. During this time, we started seeing mainstream references to “social justice advocates.” In fact, Eunice Kennedy Shriver was heralded as an early social justice pioneer for the disabled. Among her many accomplishments, Eunice started Special Olympics as a vehicle to advocate for and to bring awareness to the potential of all people with disabilities when given a chance to succeed!
I heard this during my morning run and literally gasped in stride – I had not abandoned my work in social justice by joining an organization in the disability space – I had in fact come full circle in my journey to make a positive impact within the social justice space.
Fairness is core to the concept of social justice. The movement has evolved to align with the fight for human rights. In application, human rights concern the distribution of resources, how people are treated, and access to services. When we hear the words “social justice,” we tend to think of inequities based on gender and race. But when we think along these linear lines, we make the mistake of further marginalizing one of the most forgotten groups of people – those with intellectual and developmental disabilities (ID/DD). For the more than 6.5 million Americans classified with some form of disability, gender and race does not discriminate.
I now understand that we cannot limit our understanding of social justice as a defining tool of progressive social change without understanding the fight to recognize ID/DD individuals in this country. Doing so through the lens of social justice is the embodiment of fairness.
Despite current Federal and State civil rights legislation, people with ID/DD remain marginalized and viewed as “less than” by society even today. They are systematically excluded from the economic and social opportunities routinely provided to those without disabilities. These were the realities before the coronavirus pandemic hit in early 2020.
While we may think of donating to ID/DD as a feel-good initiative, I hope that my a-ha moment can help others who are as in the dark as I was. I hope to challenge this concept that disability rights are somehow outside of the social justice narrative and affirm disability rights as a social justice imperative.
I work every day to be a part of educating people to do more than “give from afar “out of pity or mercy for people with disabilities. I hope others can see the “justice” of acceptance of all people with ID/DD as wholly and equally deserving of the opportunities to live life on their terms, to the fullest extent of their ambitions and abilities. Honoring the many Americans with intellectual and developmental disabilities is to never forget that their individual rights as citizens have been and will continue to be a part of the march toward social justice. As a society, we can, and we should challenge ourselves to do better. For my part, I am still running, still learning.