“The test results have confirmed that your son does indeed have Down Syndrome.” Four days after the birth of my son Theo, these were the words I heard over the phone as my head filled with a million questions. What does this mean? What exactly is Down Syndrome? Am I equipped to be his mom? How does my husband feel right now? How does this impact our family? Will Theo need additional support as he grows? Will this diagnosis affect his development? Will he feel valued? While the only response I could articulate in that moment was “okay” and a muttered “thank you for letting me know,” I knew one thing was certain—I love Theo, as a human and as an individual. As my baby. No matter what.
Recently returning to work, I find myself merging my two worlds together to figure out how I can best advocate and support both my son and the young people in 4-H who may have a disability, whether disclosed or not, visible or not. 4-H Youth Development has communicated its goal in “strengthening its commitment to providing programs and clubs that support youth with special needs” but this only adds more questions to my already overflowing list. What does that commitment look like in practice, and how does that impact my role as an educator? Recognizing how powerful words and language can be, I also wonder if the term “special needs” really is the most appropriate way to talk about youth who have a disability?
The National Center on Disability and Journalism (NCDJ) says special needs "was popularized in the U.S. in the early 20th century during a push for special needs education to serve people with all kinds of disabilities.". While there seems to be no universally accepted answer, there are many perspectives that stand out to me. Writer, speaker and disability educator Ashley Harris Whaley says this through her platform Disability Reframed:
...the term “special needs” is fundamentally inaccurate. The needs of disabled people are not special. They are not extra nor are they exceptional. They are human. The language we use surrounding disability is so important. Euphemistic language like “special needs” does nothing but inspire feelings of separateness and feelings of otherness.
So then how do we as Youth Development professionals change the narrative to ensure we are truly welcoming to all? Whaley recommends using identity-first language (e.g., “a Down syndrome child”) or person-first language (e.g., “a child with Down syndrome”). For some, identify-first is critically important and even necessary. Syren Nagakyrie, founder of Disabled Hikers, prefers not to use person-first language because “...it inherently implies that being a person means being able-bodied or we wouldn’t need the additional descriptor; people don’t use the term “person with abilities” or “person without disabilities” to describe non-disabled people.” Nagakyrie believes “not using the word [disability] can become another way to erase the existence and needs of disabled people.”
With so many perspectives on language, I believe NCDJ says it best, “If you are in doubt about how to refer to a person, ask the person.” Respect each individual’s choice. Continue getting to know the young people for who they are, fostering their passions, discovering what makes them uniquely special, listening to their experiences and supporting them through their challenges (which we all have!). Young people are naturally curious—don’t discourage them from asking questions about disabilities; instead create spaces where young people can learn together. In addition to language, consider these tips for program staff to create a more inclusive youth program.
While I’m still learning and certainly don’t have all the answers, the most important thing is remembering that my son is a human being who wants to feel loved, heard, supported and valued, just like our 4-H youth.
In what ways does language affect your view of others? How will you be an advocate for youth with disabilities? How do you show you believe in the potential of all youth? How do you build personal connections with the youth in your programs?
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Hi Jenny. I can't wait to welcome Theo into 4-H, although I'm sure he's already tagging along with mom. One thing I love about youth programs is how we design programs with and for the youth in our group. I've found one of the best ways to support all youth is to ask youth and families what they need and then let them be part of the planning and running of the program. Thanks for raising up an important topic.
ReplyDeleteHi Sam! Theo has yet to make an official appearance at a 4-H event/program, but it's only a matter of time :) Bringing youth into decision-making, program design and facilitation is a wonderful strategy for supporting all young people- thank-you for sharing that!
DeleteThis post is so powerful. The research you cite about "identity/person-first language" is what is sticking with me the most. While some might dismiss inclusive language as "politically correct" you've shown the impact it can have on the positive development of the young person.
ReplyDeleteJoanna- thank-you for your comments! The "identity-first and person-first" language was something that resonated with me as well. I am continuing to learn about language and it's impact on individuals with disabilities. My discoveries and reflections thus far lead me to "it's a personal choice" that we all as Youth Development professionals (and human beings for that matter!) should respect. I appreciate your reflections!
DeleteJenny, thanks for this contribution. I love the point that they are not special needs, they are human needs. This makes me think about all aspects of inclusion, which really boils down to looking at the human needs and figuring out how we can adjust a situation to make it work for the humans involved. And so often, when we make a change to make it work for one person’s needs, it ends up actually making it more accessible and more welcoming for others, as well.
ReplyDeleteKathryn- Thank-you for sharing your comments! As you so beautifully put, one programmatic change could create a ripple effect in making our youth development spaces more accessible and welcoming for others. This is definitely something I will be thinking about more intentionally as I plan for fall/winter/spring programs this coming year!
DeleteJenny, thank you so much for this thoughtful and honest post. I love your focus on language and how important that is - to making youth feel valued, seen, and changing how we meet the needs of those who are differently abled (physically, cognitively, emotionally). If we start with a universal design perspective, what do we need to do to make programs accessible, welcoming, and nurturing for everyone, however they show up? In the classroom, we might talk about including audio captions for all students, and not waiting for a student to ask or need captions, for example. I hope this conversation continues to grow as we think about what that looks like in youth programs (and I'm sure there's great examples out there already).
ReplyDeleteJodi, thank-you for providing a very concrete example of inclusion and equity in a classroom space! Taking a proactive approach in how we design youth programs is key, as you referenced. Often the simplest measures can make all the difference! For example, providing sensory tools during a youth workshop or allowing a young person to showcase something written in an oral format and vice versa. I really appreciate your comments and reflections! And I agree, let's keep the conversation going!
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