Tomorrow Is Too Long to Wait for Inclusion

5 Things Children Totally Understand About Disability That Most Adults Do Not

By Emily Beitiks

If my kids (age 4 and nearly 2) and I woke up tomorrow morning and found a dragon in our living room, my son’s top concern would be “What should we name it?” and my daughter would probably try to hug it. I haven’t yet taught them that if you see a dragon, proceed with caution, as we believe them to be fictional and quite likely dangerous.

Every single thing we know today as grown-ups, we had to learn at some point in our development.

But there are some things my kids intuitively grasp without my help. To my surprise, nearly everyone I meet below the age of 4 just rolls with it when it comes to disability. Ableism hasn’t taken hold yet. Here are five things I’ve seen young children totally understand about disability that unfortunately, most adults struggle with (And feel free to share more examples in the comment section below!):

1) There’s nothing shameful about having your butt wiped.

We recently had one of my son’s friends over to our house, and my son was trying his hardest to impress her. He showed her his extensive dinosaur collection and even let her hold all the items in his treasure chest, the highest honor. Without the slightest ounce of modesty, he interrupted their play date to loudly announce, “I have to poop!” He then ran to the toilet and carried on a conversation with her while taking care of it. Shortly after, she too needed to poop and didn’t think twice about asking me to come in when she was done, already waiting with her butt in the air.

People with disabilities and their personal care assistants know this lesson. Dependence in the bathroom becomes mundane, and taboos surrounding bodily functions go out the door. When nondisabled people think about disability, needing to rely on someone else’s help for transferring to a toilet or wiping often instills fear and disgust: if I had to live like that, I’d kill myself, they say, forgetting that it was once commonplace for all of us.

2) It’s okay to ask for help when you need it, and at other times, to turn down help.

My daughter getting help.

My kids can’t tie their shoes, read a book, (and we’ve already covered the whole butt wiping thing), so they call on others for help constantly. However, when they don’t need help, they really let me know it. Typically, it involves a shout of “I CAN DO IT MYSELF!!!,” deeply insulted that I would try to assist them with something that they had now mastered.

People with disabilities might ask for help at times, and at other moments prefer to do something without help, knowing that help can be counterproductive (e.g. you should never push a wheelchair rider’s chair or open a door for someone unless you have been asked to). Children get that it’s okay to be complicated when it comes to what your needs are.

3) We should search for commonalities before differences.

Here’s a recent conversation I had with my son (pictured right), looking at a photo of the Geico gecko (pictured left):

Carver: Hey, he looks like me!

Me: I don’t see that. Like at all.

Carver: Really? Huh.

I didn’t press further. Apparently, the lines between his body and the gecko’s weren’t as different in his mind as they were in mine.

When you think about it, several children’s movies (ET, Lilo and Stitch, The Iron Giant) show kids befriending and harboring aliens that everyone else wants to cage up or eliminate…while fictional, the impulse of children to embrace difference or even celebrate it as something cool, rather than stigmatizing, is grounded in reality. As my son’s mysterious connection to the Geico gecko, kids see commonality before difference, and my guess is it’s because they simply haven’t lived long enough to learn a cemented version of what “normal” is.

4) Devices are really useful and cool!

An assistive device!

Too often adults think of anyone who uses a wheelchair as “wheelchair bound,” suggesting the device is a tool of oppression rather than one of mobility. Children do not, however, share this perspective. My son recently said to me, “I wish I had a wheelchair, don’t you mom?” (in part because he knows he’s not allowed to play on the elevator in our house, that’s only for when a wheelchair rider visits).

And why would kids think negatively about assistive technology devices? They too rely heavily upon them, from their strollers to the stools in front of the sink to their own potty chairs and “special” scissors. Next time you see a parent toting a baby on their back, ask them how they are coping with having a “bjorn-bound” member of their family!

5) The built environment determines what you can and can’t do.

I bet this helped sell a lot of toys…

Ask any kid who grew up in the 80s anywhere near the Stonestown Galleria in San Francisco, and they’ll likely remember the joy of walking through the small door at the Imaginarium toy store. In a world built for adults, there was something magical about encountering that door, knowing that it was meant for you. I’ve seen my son react similarly when we’ve visited children’s museums that have lowered sinks and toilets at his height. And when kids encounter the converse, they’re similarly frustrated. Why is that cool toy (that I’ve taken away from my son because he hit his sister with it) out of reach on the top shelf of the bookshelf?! Kids are constantly learning what people with disabilities experience every day: what you can or can’t do and even your sense of belonging vary with the surrounding environment.

I wish I could say that what I’m taking away from these observations is optimism that the new generation of children is growing up with a keen understanding of disability. Alas, my hunch is that instead, it reminds us that we are gradually learning to make different assumptions about disability (negative and stigmatizing) that take over.

As children grow up, they often become fixated on difference, and don’t hesitate to point it out, whether it’s “Your teeth are yellow!”, “That boy is wearing a dress!”, or “You don’t have an arm!” When they do this in front of their parents, it is often quickly shut down with “Don’t stare!” or “That’s rude!” teaching them that the difference is shameful. And when our door for acceptance of difference slams shut, children can be especially cruel to other children, resulting in social exclusion and bullying.

Ableism is a learned process. However, that does give us hope that we can teach different lessons that allow us to reconnect with the lessons we grasped more easily in our youth. I’m working on that with my kids every day (so that warning about dragons being fictional and potentially dangerous might have to be on the back burner).

Source: 5 Things Adults Unlearn about Disability || Disability Remix Blog

Photo Credit: mel issa/Flickr

My Own Apartment Building

EdEd was about 35 years old when he began telling people he wanted an “apartment building.” People at Ed’s support agency, Katahdin Friends, Inc. (KFI), had been TASH members for a number of years and were inspired by leaders in supported living to rethink how and where people with developmental disabilities could live. As a result, many of Ed’s friends were moving out of foster care homes and into their own apartments with support from KFI. Ed wanted this same opportunity, but apparently he wanted an entire building!

Ed had lived with his family until age 7 when he was sent to live at Pineland Training Center, Maine’s former institution for people with intellectual disabilities. As a young adult, Ed was transitioned out of Pineland Center to a variety of foster homes, eventually ending up in Lincoln, Maine, where he lived for 17 years. Ed was always described as having “aggressive behaviors.”

Although Ed continued to see friends move into places of their own, his family resisted the change. Ed’s foster home certainly did not support his choice, and he lived under the control of his foster providers. When Ed began working at the local McDonald’s, which provided job supports, it was the beginning of new expectations!

Ed’s parents never thought he would be able to hold a competitive job — but he had, and they were so proud. They began to view Ed in a different light. If he could do this, then maybe he could do other things….

In fall 1997, through Ed’s persistence and KFI’s gentle advocacy, his family finally agreed to him renting a place with a roommate—better, but not ideal. Ed and his new support team located a roommate to share the costs, and Ed moved into his own place on October 13, 1997.

Once in his own home, Ed revealed the effect of his restricted former foster life by standing at his bedroom door until someone gave him “permission” to come into the rest of the house. Despite coaching from support staff, it took months for Ed to realize that this was his home and that he could go wherever he wanted. When he eventually learned how to make his own coffee, he immediately discovered that it tasted far better than the watered-down version he was used to. Ed’s support team also introduced him to lactose free milk on his cereal instead of water. What a difference in taste! Small things maybe, but life was changing.

Ed delighted in showing visitors every part of his home, highlighting his appliances, yard, cellar and other areas of interest. It was the first time that this man in his 40s had possessed anything and controlled his life.

Ed continued to demonstrate his desire to live alone—sometimes using powerful actions to express himself. Following TASH values, KFI rearranged its resources to support Ed’s desire to move into his own apartment without a roommate.

Because he had achieved success living on his own, holding a job and being part of the community, Ed was invited as part of a team presenting the art of the possible at a TASH National Conference in Seattle, Wash. He shared a hotel room, sampled exotic cuisines, rode an escalator for the first time and “told his story” – including what it was like to live in a state institution.

The contrast in Ed’s life is remarkable. For 17 years, he was institutionalized, then lived under foster care direction. Once in his own apartment, Ed became a valued employee and began participating in his community as a worker, neighbor and friend. Ed remains the same man he has always been; it is we who have changed – society, attitudes and the realization of the art of the possible. The same relative amount of money that kept Ed in an institution now supports him to lead a regular community life.

Ed’s life continues to blossom. He became a homeowner on December 20, 2005. He loves his new house on Taylor Street in Lincoln and enjoys being a host when people come to visit. He has been employed by McDonald’s for 13 years. He volunteers at a local food cupboard, attends music jams, plays bingo and has been attending the same church for over 18 years. He works out at the YMCA every week. And he has recently developed a new connection—the gentleman who mows his lawn regularly stops in to have coffee or a soda.

If you were to ask Ed about his life today, he would say, “I am happy, I am the boss, and it is my right.”

This article originally appeared in a document published by TASH in 2008 called When Everyone Is Included. For more information on the important work TASH does please visit their website and follow them on Twitter. This is the third article in a series. The first article can be found here, and the second can be found here.

How I Taught My 27 Year Old Autistic (ASD) Son to Handle Bullies in the Work Place

workplace

By Kathy Porter

A version of this article was originally published on Medium.

He arrives at the animal shelter where he works 15 minutes before the early morning shift starts. Punching his time card, he walks down the hallway toward the dog kennels.

“Where have you been?” she gets up in his face and yells. “You were supposed to be here an hour ago!”

She is a 62 year old co-worker.

He is my 27 year old, autistic (ASD) son.

When he quietly explains that no one told him to report at 7AM; that his scheduled start time on Saturdays is 8AM, she stomps off. Only to repeat her performance the following Saturday.

Off-the-cuff conversation is challenging for my son. When someone verbally bullies him, he doesn’t know what to spontaneously reply to protect himself.

Unless he’s coached.

The key is to use non-threatening language that addresses what’s been said without verbally attacking the speaker; to find a “one size fits all” reply that takes care of every single, rude comment that might (thoughtlessly or deliberately) come up in the work place.

Are you ready?

Here it comes.

“Your language is unprofessional and I don’t appreciate being talked to that way.”

I pulled the phrase “professional language,” out of the six years my son attended Hope Hall, a private school for children who might otherwise fall through the cracks; a school for kids like mine diagnosed with learning disabilities cobbled to auditory processing delays, to list just a few of the buzz words in vogue more than 20 years ago.

The school’s founder and executive director was (and still is) an amazing woman named Sister Diana.

“Use your professional words,” she always said to her students. This was her loving battle cry against hurtful words that kids say without thinking.

She also said, “Don’t let other people take away your power.” She meant, don’t let other people take away your self-worth.

Self-worth’s a tricky thing regardless of where you fall on the (human) developmental scale, especially if communication is problematic for you. Which it can be for my son.

However.

Despite the fact that he struggles with the nuances of language: the interplay of layered, active conversations between two or four or more people that almost never follow a straight line, soaring, instead, like kites caught in an updraft of spring thermals, swooping down then back up . . .

Each dip and sway spins that initial conversation, morphs it into a thousand different meanings.

Or so (I believe) it must seem to him.

Imagine tossing a handful of pennies into the air, tracking their splattered fall to the ground. Which one does he follow so that when his turn comes to speak, his reply makes sense?

For my son, it doesn’t matter which penny he tracks. If he’s having a conversation with two or more people, unless he has someone to guide him, he’ll lose his way.

But.

Despite the fact that he struggles with the nuances of language, he knows when he’s the butt of someone’s rudeness. What he doesn’t have is the verbal quickness to defuse it.

At that moment.

And so, he rehearsed after a brainstorming session where we put our heads together to come up with a phrase that was fool proof; that he could say back to anyone at work who insulted him; a phrase that he could take all the way to the HR department (with impunity) if one of his co-workers reported him.

Which almost happened when he (finally) screwed up his courage and used it for the third and last time one afternoon as he

and that 62 year old, part time employee worked together in the kitchen. As she opened her mouth to say something, my son verbally cut her off.

Looking her in the eye, he quietly, firmly told her that almost every time she spoke to him, she used unprofessional words and, he didn’t appreciate being talked to like that.

Then he watched her jaw drop.

I don’t know for sure (because I wasn’t there) but, I’ll bet he smiled as he walked away.

Photo Credit: Kevin Dooley

Hensel_PRrKathy H Porter is a freelance writer, author and head cheerleader for her amazing son. She grabs inspiration from a background that includes 14 years of business experience and 17 years as an educator. Her latest project? Crafting work-related “explaining scripts” for autistic adults. Join her newsletter to find out when her next article will be published and to discover more useful on-the-job strategies for autistic adults. Follow her on Twitter: @kathyhporter

Live Laugh Lemonade – Book Excerpt by Kendra Gottsleben

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The following is an excerpt from the Book Live Laugh Lemonade by Kendra Gottsleben.

Despite being less then three feet tall and having a rare medical condition called Mucopolysaccharide Type VI, I have chosen to live my life with a positive outlook and determination to achieve all my dreams. This book describes my approach to life and how I have taken advantage of its many lessons along the way. Regardless of the size or scale of many obstacles, I have–with God’s strength and the support of family and friends–achieved numerous goals in my life and I’m determined to accomplish countless more.

I’m a true believer that the attitude we take in life is what helps us succeed in everything we set out to do. Embracing a popular motto about “Life’s Lemons,” I’ve taken it one step further — “When Life hands you Lemons, turn right around and squeeze those Lemons to make the BEST Lemonade possible.” My wish for you is that this book provides the inspiration to always make the “BEST Lemonade possible” in your life! (from Goodreads)

Kendra has written for Think Inclusive in the past: When Life Hands You Lemons

Click Here to DOWNLOAD the chapter, “Choosing To Be Different” from Live Laugh Lemonade.

LiveLaughLemonadeFacebook: Kendra Gottsleben
Twitter: @Kegottsleben
Pinterest: Kegottsleben

For more information regarding Kendra’s book it can be found at the following link http://kenimagine.storenvy.com and there are ebook versions are available on Barnes & Noble.com, Sony, Kobo, Amazon.com, & iBookstore.

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