The siblings of disabled youth are committed to building more accessible worlds

by C. Imani Williams

Findings from The National Survey of Children with Special Health Care Needs reports 1 in 5 children between the ages of 12-17 have special needs. For Black children, however, that number increases as they are more likely to be identified as persons with disabilities. On top of this stark disparity, Black children with special needs are also disciplined more regularly and more severely punished than white children. 

Given the context of this disparity, I’d like to shift the conversation towards the ways that Black children offer support to their siblings with disabilities, cognitive differences and/or “special needs”. I talked with several siblings across the U.S. who highlighted the ways they are modeling disability justice approaches that center specialized care, support, guidance and accountability.

When I spoke to sixteen year old Las Nevada resident Ajanae Lehmann, she shared, “I have been helping my mom with my brother Antonio (14) since I was seven-years-old.”

“I make sure to treat him like a regular kid, and not like he’s special.”, Ajanae continues.

She, like many other siblings of differently-abled youth, is a big help to her family. Ajanae’s approach in her relationship with Antonio is one that recognizes and accepts the fact that he learns differently, and adjusts her mentorship accordingly. Like all children, differently-abled youth have areas where they excel, and areas of difficulty. 

Ajanae’s approach makes home, school, new medications, and a better quality of life possible for her sibling, all while encouraging abundance, love and compassion. 

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As a long term substitute and chaperone for children with special needs, I’ve had the luxury of witnessing the heart-warming insights and connections between siblings across ability. I’ve also seen the way our ableist culture weaves into those connections, creating large rifts between folks who love each other. 

We do a disservice to all children, and especially those with different needs, when we don’t use a variety of age and developmentally appropriate learning methods that employ more patience. These are skills that can and must be learned to help all of us grow, and also serve as an opportunity to build a more accessible world.

In speaking with Kiana Corley, 22, of Lancaster, Pennsylvania, she wanted to focus on the importance of not talking down to folks and assuming what their capacity is. Kiana says of her 20-year-old brother Malcolm, “I want people to know that they can talk to him like a normal person. The need to slip into baby-talk whenever you meet someone on the spectrum [is unnecessary]. Malcolm comprehends more than people assume.”

Kiana advocates for her sibling without hesitation and her love for Malcolm is evident. Her words, like Ajanae’s offer encouragement to others who have family members with special needs, desire to work in the specialized fields offering support or just want to be decent human beings.   

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Our society was built for able bodied people, and holds little regard for people who exist outside of that. When we center and hold appreciation for disabled folks in our communities and the ways they show up, we begin to build a world where we are all better, more present and aware. 

Many families have multiple disabled members, whether those be visible or invisible disabilities, but when disabled children have big experiences in public folks automatically assume that the child is acting out or isn’t well behaved, especially when they are Black.

We have to hold space for people without automatically assuming that they are doing something wrong and trips to the grocery store should not make disabled children feel like they are a spectacle.

Witnessing the ways that disabled Black children are supported and calling out the ways that they are not is a vital step in building a more liberatory world. I’ve had the luxury of seeing what’s possible when children are fully supported at home, at school and in their communities. 

At the last event I chaperoned, differently-abled youth danced, enjoyed playing games, and had a fun-day in their honor, but they deserve this joy everyday, not just one. Many children don’t get the opportunity to hang out socially in public spaces that are safe, fun, and free from stigma and stares. For anyone in search of more places like this, check out online resources for parents, siblings and family members with special needs children. Be sure to ask what the children in your lives want and trust them to answer. 

Look into culturally competent community-based organizations offering services to youth and adults and involve the whole family. Becoming an advocate and ally for youth with special needs is a necessary component in supporting diversity and inclusion. 

We should strive to be more like Kiana, who says in regards to Malcolm, “I try and help him out whenever my mom can’t be home, or whenever he needs a ride. I also try and help him with his independence journey whenever I can.” 

We have an obligation to ensure all of our children are confident, loved, and emotionally, mentally and physically safe. 

C. Imani Williams is a freelance writer, essayist and poet, and a social/human justice activist. She holds an MFA in Creative Nonfiction Writing from Antioch University, Los Angeles, and a Masters in Guidance and Counseling from Eastern Michigan University.  A Queer Black Womanist, Imani uses her voice to raise awareness in efforts to help empower others.