Now that it's officially summer I am doing one of the things that I love to do most, read. A lot. I read all hours of the day, finish books in one sitting, stay up way too late reading...you get the idea.
I build my pile of books all winter long and can't wait to make my way through them. I read a variety of books: novels, professional development books and young adult choices along with my kids.
Near the top of my list was Paper Towns by John Green. This is the same author who wrote The Fault in Our Stars, which I loved. So it moved to the top of my list. And I want to say that I liked it, but I can't. Because I just can't get past the fact that Green used the word retarded. Four times.
The first time I read it I flinched, but kept going. I thought about how it really isn't "ok", but didn't put the book down. I should have.
The second time it appeared I felt frustrated, and by the third time, angry. I began to wonder if I just notice this the way pregnant woman notice other pregnant women; you know, that phenomenon where you are highly in tune to something so you tend to notice it more. But that shouldn't matter. That's not a justification.
So there it was the fourth time. And I felt so very disappointed. Now I am left with a bad taste in my mouth and the clear knowledge that I will read nothing else by John Green. Ever. Because it wasn't necessary to use the word retarded. Each time there were most certainly other words he could have used. And the book would have been just as good. Maybe even excellent.
He could have used any number of words to replace retarded in the context of the story: foolish, dumb, ridiculous, useless... And there in lies the problem. Retarded should not be used as a way to describe something negative. Disability should never be derogatory.
Four times. Shame on you, John Green. You have teens reading your work. And four times they read the word retarded and think that it's ok because you wrote it. I mean, it must be ok if this author who is recommended to them by their friends and English teachers uses it, right? Well, it's not ok. Shame on you.
There are a lot more books on my summer pile. And I will read them, voraciously. But I will not recommend Paper Towns to anyone else. And I will loudly explain why.
Stop using the word retarded. Just stop.
Since the news broke about the SCOTUS ruling that all states must legally recognize same-sex marriages, I have found myself feeling wonderfully optimistic. And, of course, as I usually do, I also find myself seeking parallels between this historic moment and the disability inclusion movement.There has been a steadily growing tide of momentum over the past two years in the world of disability inclusion, with significant progress in the last five. In fact, in presentations on the topic of inclusion, I taken to saying that the disability inclusion movement is where the LGBTQ movement was about five to eight years ago.
And I believe that.
But when I went looking to draw specific parallels between this ruling and what it might mean for individuals with disabilities, I found myself struggling to find a concrete link. In other words, I can’t say that marriage equality for the LGBTQ community is just like “X” in the disability community. And I think there are more than a few reasons why.
First, I think that the lack of a universal definition of inclusion is itself a genuine barrier. Without it, each state, each school district, each organization interprets for itself what it means to be inclusive and/or offer a least restrictive environment and shapes its practice accordingly.
Next, as much as there are plenty of committed leaders, advocates, self-advocates and supporters, there doesn’t seem to be quite the same ability to organize and mobilize this movement, possibly because there may not yet be an “X” for everyone to rally behind. Or, quite possibly, there are so many issues to conquer, making overall progress becomes diffuse.
And of course there are the deeper issues of respect and value of humanity at play here. Even as society shifts to recognize and appreciate diversity in some ways, we still associate disability with “broken” and continue to try to “fix” people with disabilities to enable them to conform to accepted notions of normalcy.
And so I took my thoughts to social media and quickly sparked a meaningful dialogue among colleagues. I quickly realized that this is a conversation that needs many more voices!
Here was my post: “For a few months now, when speaking to groups about disability inclusion, I have made reference to the idea that the disability inclusion movement has come a long way recently, and seems to be about where the LGBTQ movement was 5-8 or years ago. With the SCOTUS ruling on marriage equality, I find myself wanting to write about the parallels, but could really use some concrete notion or research to anchor my thoughts. What does everyone think? Does it feel like this ruling can also be a win for disability inclusion? Or is there really nothing similar to hang our hats on here?”
And some insight from colleagues:
Brenda Giourmetakis of [In-kloo-zhuhn]: “If we want to make a difference, we have to get VERY vocal and VERY in the media. The only way we will affect change is by speaking up…And the fact that society does NOT value folks with identified disabilities and is always trying to FIX people instead of working with them.”
Additional food for thought from Disability Thinking: What’s The Next Big Victory for the Disability Community?
Join the conversation. Comment here or on Facebook. Tweet with the hashtag #BetterTogether. Really. Your voice matters.
I don’t have the answers. But I know that nothing changes if we don’t start the conversations.
About a year ago I posted an article to the wall of the Facebook group Removing the Stumbling Block. It was an article about the positive success of the Ramah training for staff working with campers with disabilities. Ramah has a long history of success in disability inclusion, and they have opened their trainings to staff of other Jewish camps.
A member from outside the United States posted the following comment:
“Stupid question (I don’t really understand what an American camp is) but how
come disabled people aren’t leading and advising?”
Not such a stupid question at all.
I suppose in it's simplest from an answer could be that these staff members are being trained to work with younger children, and that young children are not equipped to create such trainings.
But that feels a little bit like a cop out.
And honestly, I don’t know the answer.
So why aren't disabled people more often involved in creating and leading the trainings for how we work with diverse campers, students and others? On the one hand, as an expert in this field, my instinct is to be a little defensive. I’m an expert in inclusive practice and I specialize in training and guiding others. I know that I am doing this successfully based on feedback.
But if I take a step back, I realize that while I plan and lead such training sessions, I don't develop inclusive practice in a vacuum. I have learned and continue to refine my skills by working every day in an inclusive school and synagogue. I may not have individuals with disabilities specifically planning teacher trainings with me, but they are absolutely my teachers!
So is that enough?
And can the same thing be said of other trainings such as the camp one I referenced here? Is it enough that the leaders of such programs work with people of diverse abilities and use what they have learned and experienced to shape the trainings for others? Or are we all just somehow missing the mark?
A quote from the American Camping Association asserts, “Inclusion is first and foremost a philosophy. It is a mindset and a belief that everyone has value and something to contribute.” This is so entirely in line with my own philosophy that I feel compelled to repeat it often.
And I am not alone. In a piece he wrote for the SFGate in August of 2013, Russ Ewell states, “Successful inclusion begins and ends with our capacity for valuing others. We cannot include those we do not value.” Amen! Even better, Russ continues by saying that, fortunately, we can learn to value others. I agree. But how?
I believe that names are intrinsically linked to the way we value one another. In a powerful piece by Rabbi Evan Moffic called Do You Remember My Name, he tells us that, “Names convey identity. When someone knows our name, they know us as a unique individual.” I am immediately reminded of the following cartoon:
Rabbi Moffic’s words emphasize this concept when he states, “God uses names to teach values and character,” and he shares a story of the origin the name of Pharaoh’s daughter: “Jewish commentary, however, gives her the name Batya. This is an especially beautiful choice, as Batya means “daughter of God.” Even though she is biologically the daughter of a wicked Pharaoh, her actions show that she is a true daughter of God, a person willing to do right and care for a helpless Hebrew child.”
We are reminded that our actions consistently have the power to speak louder than our words. Imagine what our relationships could become if we intentionally and deliberately learned and used the name of each person with whom we interact. Every time. I’m not just talking about the people we work with or those that we see regularly. I’m suggesting that we learn and use the names of every person we encounter. “Thank you, Susan, for checking me out at Shop Rite today.” Or at your favorite coffee shop, “Thank you. Have a great day, Paul.”
So in the category of "practicing what you preach", I have decided to make a change. For those who have been following for a while (thank you!!), you will have noticed that the name of this blog is now simply Removing the Stumbling Block. While Jewish special needs education is certainly an integral part of what I write, there is much more to Jewish disability inclusion and to inclusion in general. I am excited by this change and hope that it serves to honor this blog's goal of elevating conversations about disability inclusion in the Jewish (and often non-Jewish) world.