Celebrating ADA and Creating an Inclusive Jewish Community - We Are Not There Yet

Inclusion is the right thing to do; Removing the Stumbling Block

As we mark the 25th anniversary of the ADA (Americans with Disabilities Act) thousands of people around the country are both celebrating accomplishments and sharing thoughts about the work that still lies ahead.  The ADA Legacy Project launched the "Because of the ADA I..." campaign, which offers a collection of inspirational quotes and stories only possible because of this groundbreaking legislation. There is absolutely progress to celebrate, but much more work still to be done.

This significant anniversary is an excellent opportunity to share a post that ran earlier this year on the blog of The Ruderman Family Foundation:

When I conduct professional workshops and trainings for Jewish leaders seeking to become more inclusive, I typically begin by asking them to share their definition of inclusion. (There are fun & catchy ways to do this, and most recently I have been using the prompt define inclusion in three words or less.) The reason for this set-induction is two-fold; first, it focuses participants on the task at hand and second, it helps participants to recognize, up front, that there is no universal definition of inclusion.

You may be wondering why that matters. No universal definition or standard of inclusion means that individual organizations and school districts must figure out for themselves what inclusion means and how it might best be accomplished in their setting. The Americans with Disabilities Act (ADA) guarantees that people with disabilities have the same opportunities as everyone else to enjoy employment opportunities, to purchase goods and services and to participate in State and local government programs and services. The Individuals with Disabilities Education Act (IDEA) governs how states and public agencies provide early intervention, special education and related services to infants, toddlers, children and youth with disabilities. Both of these laws prohibit discrimination. Both laws describe appropriate accommodations. But neither actually defines or explains what it means to be inclusive. As a result, there is tremendous variation from state to state and district to district.

It gets even more complicated for us in the Jewish world. As private, religious institutions we are not bound by the ADA or IDEA. There are no legal mandates requiring us to make accommodations for and/or offer inclusive opportunities for people with disabilities and their families. Advocates of an inclusive Jewish world know that the inclusion of Jews of all abilities is the right, moral and just thing to do. We know that we must look past legal mandates and turn, instead, to our own Jewish teachings and sensibilities to guide us to do what is right. But without laws or specific mandates, Jewish leaders find themselves without the proper support and guidance to make inclusion a reality.

How do we start? What do we do? Must we focus on our structures or on our people? How can we seek to bring more people into our community if we can’t accommodate their needs once they are there? Why is it that some people feel inclusion means everyone all together all the time while others prefer a balance of separate and inclusive opportunities? How do we choose what is right and what is really inclusive?

I find myself helping to guide people to an understanding of inclusion by focusing first on what inclusion is NOT. Jewish leaders can begin to make strides toward a more inclusive culture when they avoid common pitfalls and assumptions:

Inclusion is NOT saying that you welcome everyone – plastering it on websites and brochures - and then having meetings, programs or events where the same core group attends and sticks together while others are left outside that “inner circle”.

Inclusion is NOT an event or a program where you invite people with disabilities to share their experiences. (That can be a really meaningful experience for everyone, by the way – it’s just not inclusion in and of itself.)
Inclusion is NOT social action; Removing the Stumbling Block
Inclusion is NOT a favor you do for someone.

Inclusion is NOT a social action project or something your social action committee is “in charge of handling”. Inclusion, when it is part of the culture of a community, offers everyone an opportunity to participate in a wide variety of meaningful experiences.

Inclusion is NOT a place or a person – it’s not a classroom, a quiet room, the inclusion teacher, the inclusion specialist. Inclusion is who we are and what we do. It can’t be an after-thought or a last minute accommodation when someone with a disability “shows up”.

Inclusion is NOT accidentally sending the message to be thankful that you are “whole”. This is the “I’m so lucky I don’t have (fill-in-the-blank)” message. This conveys a message of pity rather than a celebration of the gifts each person has to offer.

In the end, the message is clear: inclusion matters, legal mandates or not. It is incumbent upon each organization to develop an understanding of inclusion and work toward creating a vibrant community that includes and supports everyone.

Prove That Every Student Counts

Removing the Stumbling Block - Prove Every Student Counts

See the child. 

It should really be that simple, right?

I think that for so many in the field of education, this seems like an obvious statement. See the child. Of course; that’s what educators are charged with after all, isn’t it? And yet, is it really happening? How many teachers develop preconceived notions about a student before they even meet based on a classification, a file or a teacher-to-teacher report? How many times do we allow ourselves to judge one another based on stereotypes, misconceptions or assumptions?

Some thoughts from my own behavior and practice:

Do not allow for preconceived notions.
In our school, I ensure that teachers have the information necessary to keep our children safe when school opens, but I intentionally wait a few sessions before sharing specific strategies and teacher-to-teacher information about classified students. Why? Because first impressions matter. No student should be underestimated based on his struggles from last year. We shouldn't expect a student to behave poorly simply because she has had behavior issues in the past. See the child; not her disability, not his limitations.

When you encounter a child with a disability, speak directly to the child.
When you speak to a child’s caregiver, you automatically imply that the child is invisible. If you say hello to a child and she does not answer, it is likely that her parent or caregiver will step in to help facilitate the conversation. But it is on their terms. Ever say hello to a shy toddler? When she grips an adult’s leg, the adult typically says, “she’s shy”. This is the same concept. See the child; not her disability, not his limitations.

Involve children in appropriate decisions.
Just as you would involve neurotypical children in their own decision-making when it becomes developmentally appropriate, do the same for children with disabilities. Ask them to be involved in increasingly more mature decisions such as what they might like to wear or eat, what interests them and what they believe their strengths and weaknesses might be. See the child; not her disability, not his limitations.

Avoid assumptions.
Children with disabilities are unique. All children are unique! A child may have a classification of autism, cerebral palsy, ADHD or a learning disability; but that doesn’t mean he will demonstrate the same behaviors and competencies as someone else with the same diagnosis. See the child; not her disability, not his limitations.

Every child counts. It really can be that simple.

Stop Using the Word Retarded. Just Stop - Why I'm Angry at John Green's Paper Towns

Stop Using the Word Retarded. Just Stop. via Removing the Stumbling Block

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.

***It should be noted that Green has apologized for his use of the word retarded in this book and has stated that he will never use it again in another novel. Good. My concern is still that thousands of teens are reading this book without knowing this piece of the story. And the book is being assigned by high school English teachers across the country, many of whom are not highlighting this issue and are therefore, in my opinion, guilty of perpetuating society's continued use of such slurs.

Can Parallels Be Drawn Between LGBTQ Marriage Equality and the Disability Inclusion Movement?

We still associate disability with “broken” and continue to try to “fix” people with disabilities; Removing the Stumbling Block
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:

Renee Laporte of Beyond the Crayon: Both [movements] are historically marginalized groups who experience discrimination and hate crimes. The LGBTQ movement is gaining such great ground because they have a HUGE support base, allies and fellow LGBTQ's who work hard at a local community level to educate the masses and gain acceptance. We in the disability community are also taking those steps but when a lot of PWD rely on others for their voice it, in my opinion, makes it harder for them to be heard.”

Torrie Dunlap, CEO of Kids Included Together: “I think the thing the LGBTQIA community has done is rally around ONE message and initiative- marriage equality. There are obviously lots of other ways they are discriminated against, but they chose to focus on one, and get everyone behind it, unifying their message, storytelling, etc. And it took a long time, but ultimately was so effective! What a wonderful win! They can now build on this success to ultimately change public attitudes and opinions. I have often thought that I wish that the disability inclusion community could have something as easy to communicate as marriage equality (or perhaps there is and it hasn't been tried?)”

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.
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