Let’s Dare to Dream of Success: Some Musings on “Empowering Students with Hidden Disabilities: A Path to Pride and Success” by Margo Vreeburg Izzo and LeDerick Horne
I can’t even tell you how excited I’ve been to write about this empowering, instructive book. LeDerick Horne is a learning disability advocate, speaker, poet (his well known poem, “Dare to Dream” needs to be set to music and turned into an anthem for disability pride) and so much more, and a friend of mine, and every time he talks about special education, he gets so energized and enthralled. It’s infectious. Even before I met him, I heard about the book he was working on because his wife told me about it. And here it is, hot off the presses! Oh, I have been drowning in these two brilliant minds for days now, and it has been such a pleasure to learn from them.
The melding of academic rigor and intuitive vision, research and poetry, federal mandates and personal responsibility–it’s intimidatingly powerful how it all comes together. LeDerick Horne was in special education himself throughout his school life, but without a sense of optimism and empowerment at first, while Margo Izzo first helped her own daughter with her ADHD, then got herself diagnosed as an adult. Together, they have created a “path from disability shame to disability pride” that is pragmatic in its approach. They have laid out steps for students to take; tips for teachers to implement; resources for further guidance; and defined exactly what that success–aided by strategies for inclusion and self-advocacy–might look like.
I read this book with G in mind. She is the one with the hidden disability, unlike A, and she is the one who has to meet head on all the challenges of living life in the mainstream while working overtime to process information, social cues, and modes of communication that are not always suited to her listening style. We are so lucky to have the supports and accommodations in place that she needs, but it took some time to get there, and her confidence took such a beating till then.
This book unlocked more for me, though. It helped me face the possibility that I may have a learning issue as well. I wasn’t in a school system that would have known how to handle that even if I had been diagnosed as a kid, but knowledge is power. More on that in another essay, perhaps. For now, I just want to say that Margo, your honesty was very healing for me. Thank you for being able to voice it, and then for doing something with it.
The authors held a webinar session the other day, hosted by understood.org, during which LeDerick recited his poem “An American Idea.” It was uplifting to listen to live. I am still floating along on a cloud to the ideas–strength has many forms, and we are all able; and that empowering people with hidden disabilities is one way through which American ideals are reinforced because everyone can be who they are, and they can be respected for their individual abilities. I confess it was also fun to listen to each author speak, and to pick out the clues as to who wrote which sections, and which ideas originated from each of them.
Okay, back to the actual book! As Dan Habib writes in the foreword, the motto of the disability rights movement is “Nothing about us, without us.” For people who are able to ‘pass’ until they can’t, because hidden disabilities can be hidden, but they often spill out when people are trying to become educated, plan for careers, make friends, and generally navigate life, it is important they not be left out of the process through which their lives are structured. This book is a comprehensive guide written by two people who have been there, and who are at the forefront of disability rights themselves. The world needs a Margo Izzo, who works from within academia, and it needs a LeDerick, who speaks and writes to and for the ranks of people who live with hidden disabilities.
The big ideas in this book are so stunningly obvious and yet not. Otherwise they’d be easier to absorb for a rube like me. Even living with kids who need accommodations and supports to do well in school, there was so much I had not thought of in terms of overarching values and practical minutiae. I am not a visual learner, and very much need a huge wall of text, so I had to drag myself through the informational tables and boxes (shades of school!) but I can see how they are the best way to make it all accessible to educators and students.
As the authors point out, the stakes are high for people with hidden disabilities. It is hard to gauge how many people need the help, but without it, those living with learning disabilities, speech-language disorders, ADHD, mild visual impairments, behavior disorders, or autism spectrum disorders can end up exhibiting the kinds of problem behaviors that quickly lead them to being labeled in ways that affect them for the long term. These milder, easier-to-conceal disabilities may go unaddressed even if observed by educators because they may not be severe enough to affect learning, according to the school; the costs involved may be beyond what the school is able to bear; and because of the social stigma–for the student and the family–of being labeled with a disability.
Woven through the book are personal accounts of LeDerick and Margo’s struggles and eventual triumphs. I tell you, I must have sobbed my way through a huge chunk of those accounts. But it was good crying! It was healing and affirming and all those important steps we have to take so that we can get to where we need to go. I kept thinking of Diane Keaton in “Something’s Gotta Give,” when she finally wrote her play and exorcized her demons, and she was keening and wailing and laughing the whole time. Yep, that was me while I read. This kind of engagement with a book is exhausting, which is why my blog essay for the week is delayed. Sorry! Between all this tearing up and Navratri about to start, I just couldn’t get my act together. 😉
I think the book’s strongest message to me was about how we must plant positive ideas in people, and that this is the only way to clear the weeds of doubt, fear, and rising to meet only low expectations. How else will people conquer their challenges and accept themselves the way they are, so that they can speak out and ask for the supports they need, form meaningful relationships with people, build careers that are tailored to their strengths, and benefit from mentoring? LeDerick writes about how he would plonk his head on his desk when he felt his way of learning was not being valued, and he would instigate chaos in his music class so that he didn’t have to be bored by the lesson. I found those stories very moving, and they made me look back at when I used to teach, and wonder how many of the kids who displayed such behaviors were truly struggling and had never been helped.
I was fascinated by the description of disability by Andy Imparato, whom the authors quoted. To Imparato, disability is merely the interaction between the person and the environment. Since society has not planned for all forms of human diversity, disability is also a failure of that society. We should not be forcing unwanted accommodations, but rather, imparting a sense of community and identity to those with hidden disabilities, one that is free from the idea that how their brains work is somehow a burden or a mistake. We have to be careful to find that balance between framing their needs as disabilities so that they get the supports they need, and emphasizing success as the natural outcome so that students don’t have to exert energy to hide their disabilities and the shame they may feel, because, go figure, when we hide something intrinsic about ourselves, we tend to feel there is something innately shameful about who we are.
Margo and LeDerick have laid out a disability pride framework that is truly enlightening. The focus should be on the talents and strengths the student brings to learning, and not on their perceived deficits. Because of these two opposite ways of approaching disability, a person’s path can diverge into either acceptance and then pride, or self-rejection that risks underachievement. There is a very helpful summary of the various federal laws that guide schools, including those that prepare students for the transition to adulthood. The authors are hugely in favor of self-advocacy, and feel that the IEP meetings are the perfect opportunity for students to practice and prepare for a lifetime of speaking up for what they need from college personnel and future employers in order to be successful in their adult endeavors.
As I read about the path to pride, I thought a great deal of G. So much resonance. It made me sad to realize how much she fit into the initial stages, including before adolescence, when she began to struggle with communication, learning, social skills, organization, and perception. The resultant isolation, bullying, and her growing fear of teachers were also horrid to recall. It was all really cathartic for me. LeDerick describes how he was sent to read in a closet at school, but it was called a reading room. It made me think of Milton in “Office Space,” who was sent to the basement of his workplace and had his Swingline stapler taken away from him. I just want to send all those bullies into those same basements and closets. Stay there and see how it feels, blast you. We’ll give you a glass with a paper umbrella and tell you you’re in the Bahamas. LeDerick used to walk around his neighborhood in a hoodie, hoping to look scary enough to be arrested, anything so that he could escape his reality. Margo recounts how her daughter threatened to commit suicide if she was placed in a special education classroom. It’s appalling how many stories there are.
I’m not going to give it all away by outlining the whole path to disability pride. But I do want to say how much I admire the value the authors place on working to self-disclose one’s own disabilities so that colleges and employers can step up and provide supports. And isn’t that part of being proud of who you are? This part of the argument is amazing, and I am definitely going to use this book to help G plan for her future because it’s so self-empowering and reassuring that kids like her can find success and happiness. Of course there isn’t some uncomplicated path to pride. The book’s strength also lies in the authors’ personal experiences of how people can regress, and how they have to work all the time to maintain that pride.
There is an informative chapter on the benefits of mentoring, with examples of the organizations that LeDerick and Margo have worked with, and I love love love how the authors make it very clear that when people transition to being mentors themselves, they cannot use the role to salve their own wounds. From childbirth to parenting to workplace politics to so many other things, the world is so full of people who use both formal and informal mentoring to tell their own stories, write their world views onto the listener, and not really listen, so I’m sorry, LeDerick and Margo, if the only thing I’m zeroing in on in the mentoring chapter is about how you shouldn’t be a drama queen or a pushy pants when you’re a mentor, but THANK YOU FOR SAYING THAT.
There is so much practical advice in this book, from how success comes through maintaining good routines–getting enough sleep and good food–to how to actually arrive at a career path that will prove rewarding. The chapters on transition to adulthood, navigating college life, and finding a career are going to be invaluable for our family in the years to come. And the final chapter, “The Last Transition: Disability Pride and Quality Relationships” needs to be printed out and handed to anyone who suspects they may have a disability. This chapter is for anyone who needs to confront why and how they have such a hard time working with people, and whose family members need an instruction manual on how to communicate with them and vice versa, and who needs help but has not known how to ask for it, or even understood why it’s so important to speak up and self-advocate.
When I watch G living her new life as someone who has accepted her hidden disability, and whose teachers are so creative about finding ways to help her flourish, it fills me with gratitude that she doesn’t feel like she has to hide her identity. Disability pride comes also from family acceptance of who our kids really are. The authors are very clear that family attitudes can make all the difference as to whether our kids walk the path of pride or shame. The book also allows for pride taking the form of a) disability not defining who you are entirely; or b) disability being your central identity. I love that. We really need to let people figure this out on their own, and I am just happy to be along for the ride with my kid. Whatever her path of success looks like eventually, I’m going to be the proud mama bawling on the sidelines. Look for me. I’ll be the one with the tissues.
Izzo, Margo Vreeburg and Horne, LeDerick. Empowering Students with Hidden Disabilities: A Path to Pride and Success. Baltimore: Paul H. Brookes Publishing Co, 2016. Print.