Asperger's Diary

Life through the lens of Asperger's Syndrome.

Developmental Disabilities and the Community: Why Inclusion Is Important

Sometimes, happiness is sharing a drink with friends.

Karen Gaffney Swimming
Some months ago, I chanced upon a wonderful video, of a remarkable woman, Karen Gaffney. In 2001, Karen was the first person with Down Syndrome to swim the English Channel. In 2010, she swam Boston Harbor. She is a speaker, self-advocate, and President of the Karen Gaffney Foundation, which advocates for full inclusion of those with developmental disabilities into society.

 

In the video, recorded at an event sponsored by Anthony Kennedy Shriver's organization Best Buddies International, she said, "For some people, making friends is easy and natural. But for many of us, it's the hardest thing we'll ever do...We need people like you to look beyond our differences and see our strengths. And recognize our abilities to learn, live and grow along with everyone else in the community."

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What Karen said in her speech, struck a cord with me, not only because of my own experiences in life, but because of many of the wonderful people I've come to know over the years. Inclusion is a powerful thing, and drives understanding like nothing else.

 

Years ago, my brother managed a restaurant in a small town. When we could, and business was slow, the rest of the family would drop in to visit him. These afternoons, we got to know several of the restaurant's regular customers - participants of a nearby program for those with cognitive and developmental disabilities.

Garfield with Pookie
We didn't know any of their diagnoses - we didn't need to. But they quickly became some of our favorites. We just enjoyed hanging out with them. I remember one man whom I liked in particular. As I slid onto the stool beside him, he turned to me and introduced himself. Then he asked what my favorite comic strip was. I said, "Garfield."

 

"I can do that!" he said, enthusiastically, grabbing a nearby napkin and a pen. In a flash, he drew a perfect replica of Garfield. "Here," he said, handing me the napkin. Later. he asked me if I liked "Herbie, The Love Bug." In fact, I did. I'd actually been a bit obsessed with these movies, and it turned out that he was, too. He recited, verbatim, several of the major scenes in the series, complete with sound effects - it was if he was "channeling" the movie.

 

Nat King Cole
Then he turned to my mother. "What's your favorite singer?" he asked. "Ummm...I'd have to say, Nat King Cole," she replied. "I can do that!" he exclaimed, breaking into a rendition of "Unforgettable" - in an eerily accurate imitation of the original. I've always thought that song was a particularly apt choice - because that's what he was, truly unforgettable.

 

Talking with him was different...others might have said his approach was "inappropriate," as is often described in medical literature, but I found it refreshing. In practice, it was clear - he was trying to connect. He may not have communicated it in a typical way, but you knew he cared.

One afternoon, my mother and I were sitting there at the counter, and another of the regulars came in, a young woman. As was part of her routine, she slung her backpack onto a stool at the counter, then and called her greeting. My brother asked her what she wanted. She matter-of factly said: "Oh, I think I'd like to try a beer!" Then she left...to take her customary pit stop.

We were faced with a dilemma. We were new to this, and wondered what to do. She was an adult, and a paying customer. And my brother was in the position of having to make the right decision on behalf of the restaurant...and he certainly didn't want to be discriminatory. If she had any other disability, it would have been a no-brainer. Can you imagine, for example, refusing to serve alcohol to a person in a wheelchair? That would certainly be discriminatory.

So, what was the obligation here? Did the fact that her disability just happened to be developmental really change that?

On the other hand, we also understood from experience that she was vulnerable - what if she had a bad reaction, or something happened to her? What risk would there be to the restaurant? Would people judge the restaurant harshly? It wasn't an easy question.

Then there was the intensity of her interest - she'd definitely hinted at this before, and this time, she seemed very focused on it. What if she decided to go somewhere else and try it, someplace where they didn't know her? Some place that wasn't as reputable? What might happen then? She could be victimized...

In the end, my mother stepped in, as she often did. She ordered a drink.

When the young woman returned, she asked for advice. "If I want to order beer," she asked. "What kind of beer should I get?" Then, her sharp eyes caught the bottle in my mother's hand. "What are you drinking?" She asked. This was what my mother had been waiting for.

 

Pack of Sharp's
"This is what I like to drink," my mother replied. "It's called Sharp's." A few years earlier she'd given up alcohol - and Sharp's was her non-alcoholic beer of choice. "Do you want to try it?"

 

"Yes." The young woman responded, and took a sip. "This is good! What's it called again?" she asked

"Sharp's," my mother replied, facing her and enunciating.

"Sharks?," the young woman asked.

"No, Sharp's..." my mother responded again, enunciating just a little more.

"Sharp's," the young woman repeated. Then she turned to my brother with a big smile, and said, "I'd like one of those please!" He served one up.

I still remember her happiness, even joy, as she sat there with my mother, nursing a beer and hanging out with "the gang." It struck me then, watching her, that this was more than just about the drink. It was about the ritual.

 

Beer with Friends
"Having a beer with the gang" is a rite that most people take for granted. She had never had that. All her life, she'd been told what to drink, and what not to drink. And although she was of age, many people still treated her as a child. Before I had known her, that probably would have been my instinct as well. But she was much more than that - just because she thought differently, and she didn't have the same profile of skills and abilities as others, didn't make her a child.

 

In the end, I like to think that my mother came up with a good solution - she gave the example, but our friend made her own decision. On the other hand, I often revisit that day...should we have volunteered that she was drinking non-alcoholic beer? Was that a betrayal? Should we have been less protective?

I don't know. But I do know that that afternoon with her changed how I saw the world in a deep, but profound way. It reminded me not to take anything for granted - and that there is joy in the little things. And when I get frustrated with life, I remember the lesson I learned from her: Sometimes, happiness is as simple as sharing a drink with friends.

 

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Lynne Soraya is the nom de plume for a writer with Asperger's Syndrome.

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