Self-Advocate or Advocate: What’s in a Name and When to Use It?

In conversations, we use various terms to describe our roles and interests to others in our communities. You might proudly tell someone a little about your job, family, and hobbies as a way to spark a possible friendship. These types of examples help shape identities and should be worn as badges of honor. In my perspective, someone’s disability status falls in the same category. We can embrace all parts of ourselves rather than hiding some properties away for the sake of fitting into society. Personally, I hardly ever shy away from sharing information about my involvement within the disability community with others. I was born with two conditions (autism and Sotos Syndrome). As well, I have a sibling who was also born with a different, rare condition and complex medical challenges. These significant parts of my life have helped guide my passion for helping improve healthcare access for everyone.

Sharing a little about my story is a fantastic way to help build relationships and uniquely educate on current issues. In my view, people want to learn more about topics from people who share about lived experiences along with facts. However, others might not necessarily feel the same about sharing personal information during initial conversations with someone they have just met. People we interact with may want to keep things private, as well. Both of those situations are okay! The important idea is to respect others and their choices when they share about their lives.

On this note, in talking with friends and coworkers, people with disabilities may have different views on specific terms they use to describe themselves. A relatively recent example of the terminology debates focuses on identity-first versus person-first language regarding autism, intellectual, and developmental disabilities. This discussion stems from personal preferences and owning disabilities as a part of life. Professionals, researchers, and family members have typically chosen to stay with person-first language (Johnny, a person with a disability) because disabilities should not impair enjoyment and success. However, some people within the disability community might want to use identity-first language (Johnny, a disabled person) as a means of embracing their condition.

This shift in perspective sparks important thought questions. Should we decide to use a person-first or identity-first language? Are we self-advocates or advocates? Can we mix the terms when telling our stories, or do we have to stick with one over the other? Basically, going back to the title of this blog, what’s in a name?

William Shakespeare posed this same question in the famous play, Romeo and Juliet. In the referenced scene, Juliet feels deeply saddened because she will never be with her true love, Romeo. Their families have hated each other for generations. Juliet doesn’t understand why a family name matters. She says to both herself and the audience, “What’s in a name? That which we call a rose by any other name would smell as sweet.” Despite what people call him, Romeo will always be Romeo – her one true love.

Tying Shakespeare back to the real world, the people we know will be the same, no matter what labels are used to refer to their advocacy status. It’s all a matter of their personal preference. Some individuals with disabilities might call themselves self-advocates as a way to proudly

acknowledge their unique lived experience. They may choose to include it at social engagements as a positive attribute. Others may not want the extra attention that the word self-advocate could create when talking to peers. To this group, a disability diagnosis shouldn’t affect the quality of someone’s opportunities to show support for people who most need it. They don’t want a special spotlight directly on top of them when working on critical issues. So, they would prefer to be called advocates, without anything else added to that specific title.

Depending on the context of the conversation, I refer to myself as the following:

1. Autistic AND/OR someone who has autism AND/OR someone on the autism spectrum

2. Self-advocate AND/OR advocate

3. Any combination of the above

For instance, I might call myself a self-advocate on the spectrum if I’m talking to other people who don’t have similar lived experiences in the disability community. Otherwise, I may choose to call myself an autistic advocate with people who might be on a journey in life that is similar to mine. My words may change from time to time, but above all else – I will always be Emily!

As I mentioned on what to tell others, choosing your way to describe your advocacy journey falls to only one person: you! This principle applies to all people, as long as the choices we make are respectful of everyone. If you are unsure about how to address someone, simply ask them their preference. This easy inquiry shows your consideration.

I welcome the opportunity to know your stories and hold conversations about “labels” and other topics regarding respectful language. Feel free to reach out on Facebook (https://www.facebook.com/ecsbridges), Twitter (https://twitter.com/ecsbridges), or Instagram (https://www.instagram.com/ecsbridges/). Also, I encourage you to visit the 2020 AUCD Emerging Leaders Map. If you’re not familiar with it, this interactive map features information and locations of current and former UCEDD and LEND trainees, experienced professional partners, and newcomers to the disability world from across the United States. I represent the University of Georgia’s Institute on Human Development and Disability, and there are many other fantastic, knowledgeable people featured as well. Connecting with them is a great way to further understanding of this and many other topics!