Finding Your Voice

As someone who’s gone through most of their life not having a voice, I cannot possibly say loud enough how essential it is for young people on the neurodivergent spectrum to learn as soon as possible to BE ASSERTIVE.

I have noticed in many situations, the neurodiverse/disabled one is more or less expected to be the “good/sweet/nice” one (VERY particularly when said individual is female.) I can indeed vouch for what it like to like to get scolded and reprimanded for raising your voice, having an opinion, and/or saying what you feel. Meanwhile, [neurotypical] NT/abled peers are always allowed to act worse and get a free pass. Not only that, in many cases, you’re actually praised for not standing up for yourself!

Why is that? Does it go along with the generalization that disabled/ND individuals are perpetual children, with no true grasp on the larger world, who need to be sheltered because they apparently will never be able to conceptualize society?

I believe in many cases the “grooming” to always be the “nice, good, docile” one in all situations starts the very instant that a child (very particularly if it’s a girl) begins to show the slightest signs of a disability…even before an official diagnosis is made.

Realizing that you have a voice and *must* be able to use it in this world we live in (and that’s not always a “physical” voice” – it can be a hypothetical voice such as a communication device, letterboards, sign language, cards, etc.) can be overwhelming at first. And I’ll say something: if you spent most of your life being the good, sweet, meek one, there are people, tons of them actually, that are very much going to attempt to discourage you once you find your voice. They’re going to try everything in their power to bring back the “you” they were comfortable with, and that’s because they benefited from your passivity and meekness. People are going to guilt trip you, and make you feel as though you’re flawed. You’ll hear it all the time. Don’t let them get to you. They benefitted from the sweet, weak-willed you. They used you for their own gain. But, there *will* be a few that will respect and encourage you once you *do* start speaking up.

I’ll give an example: at my old camp in North Carolina, we were in the camp van, and someone sitting next to me was doing something that was bothering me. Instead of going, “um…hee…hee…” like I would do in such a situation (and remembering the one or two times, back at my old school when I, trembling meekly, attempted to stand up for myself, the “teacher” (not a licensed teacher) would say, “oh Giggles (note: my name was ‘Giggles’ because you know what they say…if you don’t laugh, you’ll cry) you can’t be mean like those guys. You’re so sweet and nice. They’re mean, so it’s okay for them to do those things to you),” I took a deep breath, and said, in my tiny, trembling, timid voice, “ummm…please stop…I don’t like that.”

I instantly braced myself for the explosion to happen. And it happened. But not in the way that I was expected. Instead of the van launching into “You can’t be mean to people like that! You’re too nice! That’s not like you,” one counselor, Addie, exploded into cheers, spun around and high-fived me, and whooped, “Kerry! You GO, tough girl!” And I could see faces all around the van, with huge eyes, their jaws on the floor, shocked, and in a state of disbelief. I heard a voice coming from another camper, “wow…Kerry NEVER tells them!”

And you know who was in the biggest state of shock in the van, out of all those people? Myself. Did I actually just stand up for myself…and not get into trouble? Moreover, was I actually *praised* for standing up for myself?

So, suffice it to say: I’ve realized that contrary to what I have been told most of my life, anger and passion are indeed good emotions to have to a moderate extent. It’s good to have an outlet to channel your anger, your rage, your passion, and use it to change the world. And a good part of this is learning self-advocacy, and advocacy for the disabled/neurodiverse communities in general.

Edited from original work of Kerry Perdy

Rate & Review Books with NCBC

 

Welcome back to Rate & Review Books with NCBC! 

This month, we hear from a Next Chapter Book Club (NCBC) that includes members who have been participating for almost 16 years!

Book or series of books: The BFG

Author: Roald Dahl

Please tell our readers a little about your book club.

“Well, Ashley and Suzanne have been here the longest,” says Carol, club co-facilitator and owner of The Alternative Center, a day program attended by most of the members in this club. Suzanne and Ashley have been participating in this Monday night NCBC since it began in 2008. While membership in the club changed slightly over the years, it changed significantly with COVID.

“We were determined to keep this going,” says Bonnie, co-facilitator and parent of club member Sara. “We really enjoy it,” she says. Bonnie and Sara first participated in a Next Chapter Book Club in the Chicago area. When they moved to Columbus in 2017, they were happy to find out that they could join a book club in the city where NCBC began.

Newer member Jaime shares that she was excited to join the book club. She and David started around the same time, in spring 2023. Until that point, all the members in this club had been women. “Then David fixed that!” says Suzanne, and the group laughs.

This NCBC meets in a bookstore, where Suzanne and her service dog Alfred join the club each week. Suzanne shares with the group what it used to be like to go to public places in her wheelchair. “There were jobs I couldn’t take after high school because I literally couldn’t get into the building,” she says. “Now buildings have to be accessible.” (Learn more about the Americans with Disabilities Act here.)

Members and facilitators in this Next Chapter Book Club gather around a table and smile

Front row, left to right: Sara, Carol, Suzanne, Jaime, David, Bonnie, Caroline. Back row: Elizabeth, Ashley. Not pictured: Alfred the service dog.

What is this book about? What happens in this book?

“The BFG [Big Friendly Giant] would blow a trumpet into the boys’ and girls’ rooms at night, and they would have happy dreams,” Elizabeth shares.

One night, after a girl named Sophie sees the BFG, he kidnaps her. “But he would never hurt her,” says David. The BFG takes Sophie so she won’t tell anyone about him.

Unlike the other giants, the BFG is friendly and refuses to eat children. The group begins to laugh about some of the wild and gross names of the other giants. “The Bonecruncher, the Gizzardgulper, the Fleshlumpeater…” Bonnie recalls and shivers with disgust.

Ashley adds, “They creep me out. I can’t.” Ashley and a few others are clearly grossed out by the giants and their eating habits.

How easy was this book to understand?

“Some of the words in this book were hard to understand,” shares Carol. Made-up words like “snozzcumber” and “whizzpopping” made The BFG both a funny and sometimes challenging book for this group of readers.

“We liked how the giants said, ‘human beans’ instead of ‘human beings’,” Bonnie says with a smile. “We could still follow the plot of the story, even with the made-up words.”

What did you like about the book?

Members of the club enjoyed the unlikely friendship between Sophie and the BFG. “As we read, we could see the friendship forming,” says Carol.

“He protected her from the other giants and kept her safe,” Suzanne adds.

Toward the end of The BFG, the Queen of England makes an appearance, and Sara shares that this was her favorite part.

Were there any parts you didn’t like? If so, what were they?

Co-facilitator Caroline says, “We did not like the descriptions of what different people taste like.” To that, everyone strongly agreed.

If another Next Chapter Book Club was thinking about reading this book, what would you tell them?

Club members said that they would suggest other NCBCs read The BFG. Added Carol, “We did laugh a lot.”

Please rate this book on a scale from 1 to 5 stars.

This club gave The BFG 4.1 out of 5 stars.

IPSE Day!

What is it? IPSE, Inclusive Postsecondary Education Day, is a day when we encourage anyone who has any connection to a higher education for students with intellectual disability to speak up about their experience. We want more people to understand the benefits of college for students with intellectual disability.

When is it? May 1st, 2024

What can I do? You can do a lot! Such as…

  • Tell a friend, neighbor, or family member about IPSE
  • Post pictures or videos on social media with the hashtag #IPSEday2024
  • Talk to educators and inform them that college is an option for students with intellectual disability
  • Reach out to your elected officials and share with them the value of IPSE

Want more information? Go to #IPSEDay Webpage