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Empowering Words

Caroline Vernon on Ableism


“Striking a balance between freedom of speech and avoiding ableist, racist, or sexist language is crucial. It all boils down to respect, the fight for dignity, and avoiding further stigmatization of any community. Unfortunately, it has taken on a highly political tone, which I find puzzling. It's not a political matter; it's about mutual respect.” Caroline Vernon

In today's episode, we'll be shining a light on ableism, a form of discrimination faced by people with disabilities, whether physical, mental, or cognitive. Our special guest is Caroline Vernon, a business coach and diversity, equity, and inclusion champion. Caroline opens up about her connection to ableism, sparked by her sister Krissy with Down syndrome.


Stephen Matini: How did you become interested in your current role?


Caroline Vernon: I've been involved in the world of work related to employee engagement and coaching for quite some time. So, transitioning into my current role as a practice leader in a coaching organization felt like a natural progression. I've always had a keen interest in coaching and firmly believed in its power.


Within the realm of work, my career has encompassed various facets such as employee engagement, talent acquisition, career development, and now, career transition and leadership development.



SM: What about coaching sets it apart for you compared to other aspects of our field?


CV: It's all about those genuine relationships and having truly authentic conversations. They can be quite raw, but I find great satisfaction in helping and empowering individuals to discover their authentic voices. Many people never explore that aspect of themselves, or they don't take control of their career destinies.


Being a career coach has truly been a profound experience in my professional journey. Witnessing individuals who have never dedicated time to self-development or considered their career paths transform through coaching is remarkable. They start to view their careers differently and plan to advocate for themselves in the workplace. It's an incredibly powerful experience for me.



SM: How did you develop an interest in ableism?


CV: I've always had a personal connection to this issue as my sister has Down syndrome. Throughout her life, I've served as her interpreter, so when I came across the concept of ableism, it naturally piqued my interest. I dedicated time to understanding what ableism entails, how it manifests in our daily lives, and especially in the workplace.


It all started with an article I read. While it was meant to be a heartwarming story, the author referred to his brother as a "low-functioning downsy." This struck me because many people use such terms when discussing individuals with Down syndrome, saying "downsy" instead of acknowledging them as people with Down syndrome.


That's when my first encounter with ableism became vivid. I stumbled upon an image of a man with Down syndrome in the article. The caption read something along the lines of, "No one has ever trusted this young man to hold our family's babies." The author then went on to describe the experience of letting him hold a baby and referred to him as a "low-functioning downsy." It left a lasting impact on me.


I decided to write a lengthy article, which I shared on LinkedIn, addressing the issue of ableism. I discussed how such language affects individuals with Down syndrome and how labeling them as "low-functioning downsies" perpetuates stigma and marginalization within this community.


That experience prompted me to make a commitment: never to use such language when referring to my sister and to educate those around me about its hurtful implications on this community.



SM: In your experience, has combating ableism primarily involved raising awareness about language, or have other strategies been effective?


CV: It's not just about recognizing how language affects the individuals it refers to, but also its impact on those around us.


Take, for example, the use of the term I can't even mention, the "R word." I'll say it once, but then I'll refer to it as the "R word." Retard.


Unfortunately, even today, I hear it used in the workplace. Despite our progress, we still have a long way to go. I don't care who uses it; I will always speak up and say, "That word offends me. It's a hurtful term that was historically used to describe individuals with Down syndrome and other neurodiverse conditions." It perpetuates marginalization, and we must stop further marginalizing this community.



SM: Is ableism connected to other forms of discrimination, such as ageism, or is it primarily related to neurodiversity?


CV: Ableism is typically associated with neurodiversity. Ageism, on the other hand, is a distinct issue, much like racism has its own unique characteristics. Ableism pertains to those with diverse abilities, not necessarily ageism or racism.


Whether it's racism, ageism, or ableism, these situations are like dark clouds. They cast an enduring shadow that can only be dispelled through education and advocacy for those targeted by this language or discrimination. Regardless of whether it's ableism, ageism, racism, or sexism, the impact is unrelenting and profoundly emotional. These situations, despite having distinct labels, share a common impact.



SM: What do you think about the debate on freedom of speech, especially in the US, where people argue about what words can or cannot be used, and some see it as censorship?


CV: Striking a balance between freedom of speech and avoiding ableist, racist, or sexist language is crucial. It all boils down to respect, the fight for dignity, and avoiding further stigmatization of any community. Unfortunately, it has taken on a highly political tone, which I find puzzling. It's not a political matter; it's about mutual respect.


Each of us possesses diverse abilities, and our focus should be on empowering and uplifting one another instead of using language that divides us. The key is awareness, and it has nothing to do with whether you lean left or right; it's about being a decent and respectful human being.



SM: How do you bridge the gap and deal with hostility when advocating for neurodiversity and fighting ableism? What strategies work best for reconciling opposing viewpoints?


CV: The most effective approach is to promote more inclusive education. Many people aren't even aware of what ableism is, as it's not a term that's commonly used. Even when I actively seek it out, I find it's not widely discussed. So, any opportunity I get to educate individuals who may not grasp the impact of ableist language has proven successful.


It's essential to approach this education with respect. Rather than an immediate and forceful response like, "Don't say that, it's ridiculous," it's about respectfully educating those who may be unaware of what ableist language entails.



SM: For anyone who finds themselves targeted by such language, regardless of the type of neurodiversity they experience, what advice would you offer?


CV: I'm reminded of my sister's experience. Throughout her life, we've encouraged her to simply ignore ableist language and comments that undermine her abilities or self-belief. What I recommend is precisely what I practice: respectful education. It's crucial for them to feel empowered and capable of standing up against disrespectful language.


In my opinion, the best approach is to continue educating and advocating, not only for themselves but also for those with diverse abilities like theirs. However, it's essential to do so in a respectful manner. Lashing out rarely improves a situation; it's not in their character. Instead, respectful education is the most effective way to combat further instances of ableism in their interactions with others.



SM: Have you ever organized a program, perhaps for a client or a company you were working with, aimed at raising awareness about ableism?


CV: Yes, I have. Several years ago, I was part of an organization that utilized an assessment focused on individuals' strengths. We provided this assessment to participants in a leadership program affiliated with the Special Olympics.


We began by helping them identify their strengths, taking a different approach from what they had often encountered. Instead of telling them to overcome weaknesses, we emphasized their strengths and encouraged them to embrace these attributes. With this information, we empowered them to become leaders in their communities.


The program spanned approximately 12 weeks, culminating in a graduation ceremony where participants showcased their talents and skills. It was a beautiful experience that brought countless smiles. Throughout the program, we maintained our focus on their strengths and what they excelled at, rather than dwelling on areas where they may have struggled. It left a lasting impact on me, and I frequently think about those who were part of the program.


Interestingly, my sister also graduated from that program. It remains one of the highlights of my career.



SM: Has your sister ever shared her experiences of encountering ableism?


CV: No, she hasn't. She's led a relatively sheltered life, and we've kept it that way to protect her. My mom, in particular, has taken great care to provide a sheltered environment for her, despite her being almost 50 years old. However, this summer marks a significant change as she will be living independently for the first time in a community designed for individuals with neurodiversity. It's a beautiful and highly supportive community.


I actually explained the concept of ableism to her because, despite the fact that I've witnessed instances of it over the years, we didn't have a name or label for it. We would simply describe it as encounters with people who were rude or disrespectful to her. In summary, she hasn't directly discussed what it's like to experience that kind of disrespect.



SM: Your insights on ableism are thought-provoking. It's a discrimination that can manifest in various ways, whether based on race, gender, sexual orientation, or other identities. There are unique challenges, but common threads bind them together.


CV: It's essential to remember that it's not your responsibility to carry the burden of other people's thoughts and beliefs. This is precisely how I feel about individuals who thoughtlessly use offensive language or act against specific groups.


I don't see it as my role to wage a war against them. I consider myself a peaceful person, and my approach has always been about not forcibly imposing my views on anyone. I believe that approach can do more harm than good and further marginalize diverse groups of people.



SM: Are you worried knowing that your sister is moving out?


CV: While there's a touch of worry in the back of my mind, my heart, which I believe matters most, is genuinely happy for her. She deserves to have her own life.


She has been an incredibly loyal and steadfast companion to my 92-year-old mother throughout her entire life. She's been her caregiver, confidant, and all-around friend. But it's time for her to live her own life.


As she approaches her 50th birthday, this move is symbolically significant. I believe she will thoroughly enjoy it. The community she's moving into is very attuned to the needs of individuals like her. So, even though I keep reassuring myself, it's going to be fine, it's going to be fine.


Will I miss her? Yes, she currently lives with me, as both my mom and my sister have been with me for the past six months. It will feel strange for a while, and there will be a sense of emptiness in the house. However, I constantly remind myself that it's time for her to start a new chapter in her life. I know that she'll find happiness in her newfound independence.


We're taking it slow, transitioning from a few days a week to her having her own place. This gradual process is exciting as we set up her new place and decorate it. I'm mostly excited for her, but there's a tinge of sadness for myself.



SM: Caroline, as we wrap up, is there a key message you'd like our listeners to remember from our talk? Anything you'd like to highlight?


CV: I firmly believe in the power of education—educating yourself and those around you. I strongly believe in respectfully educating individuals who may not fully grasp the impact of their words. This is important.


Employment opportunities are also crucial. Right now, there's a significant lack of opportunities for individuals in the neurodiverse community, particularly in the workplace. If our conversation can influence even one person involved in hiring or recruiting for a job, I encourage that person to give someone with neurodiversity a chance, to focus on their abilities rather than their disabilities. People would be pleasantly surprised.



SM: Thank you so much for sharing your time with me. I send all my best wishes to you and Krissy for a smooth transition as she moves out.


CV: Thank you. I really appreciate that. It's coming up sooner than I think my mother is prepared for, but it's time.


Caroline's insights into ableism highlight the need for education and respectful conversations. Let's all strive to create a more inclusive and understanding world where neurodiverse individuals are given opportunities to thrive. I wish Caroline and Krissy all the best as they embrace this new chapter.


Listen to Caroline Vernon on the Pity Party Over podcast to learn how avoiding ableist, racist, or sexist language can build dignity and foster mutual respect.


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