Accessibility Creates Inclusive and Diverse Cultures
In July of 1990, President George H.W. Bush signed the Americans with Disabilities Act (ADA) into law. Since then, Disability Pride Month is recognized each July to celebrate disabled Americans, their identities and culture, and their contributions to society. Those living with disabilities should be honored and take pride as their individuality is a natural and beautiful part of human diversity.
Unfortunately, that is often not the reality experienced by disabled people. There is still a burning need to address the stigma associated with disability and I have come to learn that living with a disability hardly feels like a celebration most times.
When my son, Caffrey, was diagnosed with Duchenne Muscular Dystrophy (DMD) in May 2020, I went through an awakening. When one is faced with a progressive, muscle-wasting condition that guarantees being wheelchair-bound, one starts seeing the environment in a drastically different way. Suddenly, we were thrust into a world that felt horribly inaccessible.
I have always thought of myself as a person and leader that was sensitive and empathetic to the needs of very diverse individuals and groups. I have tried to foster cultures that were welcoming and created safe places for all perspectives to be shared openly and, more importantly, were listened to. And, most of all, I have always tried to treat people with respect and kindness, regardless of our differences, monitoring myself for biases, and insisted on the same behaviors from those with whom I worked.
It took me experiencing things first-hand to truly understand and appreciate the hardships that often must be navigated with each day, with each interaction, with each footstep for those with disabilities. If I am honest, it was only when it mattered to me personally that I realized what I had been advocating for as a leader, and hopefully role-modeling, simply was not enough.
A personal emphasis: Accessibility at home
Accessibility is a major consideration for my family, and we always self-edit our outings to ensure all five of us can enjoy planned activities. If we go to a movie, is the theater on the main or higher level and, if the latter, is there an elevator that can be used? If we go walking outdoors, are there paved or wooden walkways that will minimize the risks of trips and falls? If we go to a historical site, will there be ramps or are they exempt from ADA requirements, making it necessary for my son to get a piggy-back ride up the steps subjecting him to public humiliation? It can be exhausting to think through all of this in advance, but it’s worth it to create an inclusive experience where our entire family can build positive memories together.
The winter before my son’s diagnosis we attempted a family ski trip. It ended with Caffrey in tears on the first day of lessons and his refusal to try again on the second. Of course, we didn’t have an appreciation at that time that his disability made this activity far more challenging and dangerous, and once we received his diagnosis, we wrote off any future ski excursions. That is, until this past winter. Our family was the recipient of a generous gift by a wonderful organization called JB’s Keys to DMD, and they sent us skiing with the New England Disabled Sports program. I never expected us to be able to ski together again but there we were, me and my daughter on skis, my husband and oldest son on snowboards, and Caffrey in his sit-ski at the top of Loon Mountain taking in the breathtaking view. We were simply a family of five enjoying a winter weekend together just as typical families do. It was an incredible lesson for me to not rule out things we can’t do anymore, but to focus on the ways in which we can do all of those things, albeit in an adapted way. A commitment to accessibility made this activity possible for us again and it was enlightening for me to see how truly inclusive it felt being in an environment where this was a clear priority.
The progression of my son’s condition makes accessibility hit close to home as well – literally the house itself. When our son was diagnosed, we quickly realized that our house would soon become obsolete for his needs. Stairs, narrow doors and hallways, and tight bathrooms with steps into a shower make it an impossible space for someone with a physical disability to navigate. Imagine how terrible it would feel to be deeply uncomfortable even in your own home. We may not be able to affect all the environments our son needs to access, but if there was one place on earth that we could keep our son as safe and independent as possible for as long as possible, it should at least be his own home.
To adapt to our son’s current and future needs, we are now embarking on a major renovation of our 1960s mid-century modern house. Our experience is being documented by Roku’s ‘This Old House,’ and episodes will begin airing in September 2023. Our ambition is to transform our house into a home where all of us can be equally connected, where no space is off-limits, and, most importantly, where accessibility and inclusivity for all are prioritized. We are incredibly grateful to the production crew as well as the team of experts that we have assembled from our architects and general contractor to our designer and accessibility consultant, all of whom are embracing the concept of making this space just as functional as it is beautiful and telling our family’s story with respect and grace. Whether faced with a disability or a desire to age in place, we hope that our journey makes ‘accessibility’ more ‘accessible’ for a broader audience.
Diversity does not mean inclusion: Accessibility at work
As leaders, we often learn about and focus on the importance of Diversity, Equity, and Inclusion (DEI) for creating workplaces where all people can experience fair treatment and participation, particularly those that are underrepresented or subject to discrimination. People who have worked with me know the emphasis I have always placed on inclusion. Diversity is bringing together beautifully unique perspectives. That is not enough. Our inclusive actions and behaviors creates space to bring those voices and perspectives to create a sense of belonging and equity for all individuals. Inclusion is the part of the equation we need to get right for everything else to matter.
Seeing the world through a new lens of disability has been an eye-opening experience about the critical interplay between access and inclusivity. Think about it this way, if someone does not have the ability to easily and readily access the colleagues, information, facilities, etc. needed for a company or organization to function, we can’t possibly get the most out of our precious talent nor give them a fulfilling professional experience where everyone can enjoy a sense of belonging.
We should be paying much closer attention to accessibility and prioritize efforts that break down artificial barriers that discriminate against populations. There are approximately 60 million, or about 1 in 5, Americans with disabilities, making this the single largest marginalized group in the United States. It is also important to note that disabilities fall into broad categories including physical, cognitive and intellectual, psychiatric, non-visible and undiagnosed, and sensory and, therefore, practices to address these needs should be equally comprehensive. Although accessibility may be inherent in the definition of inclusivity, these considerations are often overlooked and, rather, they should become the central tenet.
There is still more work to be done to create a truly accessible and inclusive culture at Alltrna, but we are starting this important effort and making it a priority. Beginning with our new corporate values, we are deliberate in specifying that we ‘embrace all voices and experiences’. We also recently welcomed our first service animal, ‘Boss’, to our offices and labs. When we first learned about Boss, we knew we wanted to make it possible for him to spend his days with us and did the appropriate research to ensure we could keep him safe around our equipment and supplies. This was a small accommodation to make the work environment far more accessible for one of our valued employees, and well worth it, if that means Boss’ owner can bring their best self to the workplace.
I have more pride than ever before for Caffrey who faces an unapproachable world everyday with courage and determination despite his disability. But I am also proud of myself. It was not easy to accept the challenge of my son’s diagnosis but being the mom to a disabled individual has had an unexpected benefit. It has made me a leader with a better awareness of the importance of accessibility and the role that we play in leveraging this understanding to create truly inclusive professional environments. But one does not need to be personally affected by a disability to benefit from the same enlightenment. All it takes is a bit more self-awareness, willingness to learn about the diversity of disabilities and the challenges they present, and to proactively find opportunities to create an equitable environment.
This Disability Pride Month, I celebrate our beautifully diverse humankind that comes about from all sorts of people, including those with disabilities, and reconfirm my commitment to continue to build an accessible and inclusive world to be enjoyed by all. I invite others to embark on your own accessible leadership journey and suggest the following useful resources as a place to start:
https://thearc.org/blog/why-and-how-to-celebrate-disability-pride-month-2023/
