The Many Paths to Inclusion

by Betsy McAlister, Guest Contributor

The realization that something is unfair comes in many forms, and often during unexpected moments. Our moment came last year when my older daughter was a senior in high school. She had tears in her eyes after listening to me explain that her freshman sister was being asked to drop choir due to vague reasons that it might be too difficult.

Her sister, born with developmental disabilities, had been in choir since elementary school, and we thought her participation in the high school choir was a given. And yet discrimination and the difficulties of inclusion were unfolding, once again, in our family life.

As a parent, there have been many times I have faced a teacher, neighbor, friend or stranger who does not understand inclusion; however, my mind kept questioning how my younger daughter could enjoy the benefits of a music program if she wasn’t even in the class.

The reality is, physical presence is the first step to inclusion. If my daughter is not even at school events, public places or family gatherings how can she participate? Where is her dignity of risk? Shouldn’t high school, for her, be about new experiences and classes and not about exclusion and imposed limits?

We were faced with choices: educate, push, pause, agree or disagree. In this instance, my mandate from my younger daughter was clear: it was time to push.  She repeatedly made it clear to me she wanted to stay in her choir class, and she needed help in advocating. This opportunity was not about a power struggle between her teacher and me but about my daughter’s passion for music and her goals in high school.

As my husband and I strategized and attended numerous meetings, we agreed that we had to do what is really hard to do: we listened. We went to every meeting requested, and we listened...again and again and again. We listened when the teacher mentioned that my daughter’s presence was not fair to other students because it was a performance choir. It was hard to listen to that, but we did.

We engaged our daughter in the process, made our expectations clear and found her additional support for the class. We refused to agree to her being transferred out of choir, but we also came to the table with ideas, openness and support. And through the process we found her choir teacher became willing to work with us and offered many great suggestions and ideas.

This September, at a fall choir performance, my husband and I listened to a few choir members on stage share why they loved choir. Each mentioned the beautiful music first thing in the morning, the friendships, the learning, and the caring atmosphere of their “choir family.”  One student gushed, “Choir is just the best.”

My husband smiled at me as we understood those same experiences were just what we hoped our daughter would enjoy. The path was difficult, but there she stood in a beautiful dress on stage singing.

Alexa's Story: Why Not Me?

Throughout her childhood, whenever Alexa’s parents talked about her younger sisters trying something new, she would ask, “Why not me?” It was hard to accept, but Alexa’s mother never really had a good answer. So, as Alexa pushed the boundaries, they felt their way through the challenges of creating as typical a life as possible.

As they got older, and the topic of getting jobs and moving out became a conversation with her sisters, Alexa once again asked, “Why not me?” After all, she was the big sister. Her parents agreed; they shared the same expectation of work and a life outside the family home for all their children. For Alexa, as always, it would take extra help and some trial and error.

With help from her family and paid services, Alexa found employment and an apartment that she shared with her grandmother. Later, when her grandmother moved out, Alexa and her family advertised and interviewed a new roommate without disabilities and closer to Alexa’s age.

Sharing her home with a peer that has an active social life, including online dating has had Alexa asking herself, “Why not me?” She’s had a boyfriend, but being around her roommate made her realize that she was missing something.

“In real life, it is hard,” she says, sipping her iced tea at a local coffee shop and teasing her mom about being a "drama queen" over the topic of dating. “I’m a little bit picky. The guy has to be cute, but also nice and kind.”

She says that it was her idea to try online dating. Her mom found a site that’s for people with disabilities that they both felt comfortable with. “It’s like email,” Alexa explains. “Most of them live on the other side of the country.”

When asked how she deals with her mother’s concerns, Alexa says, “My mom was more like the worry wort. So, basically, I decided I wasn’t going to tell her everything about it.”

“Just like her sisters,” her mother says. “Nobody tells me anything.” Alexa beams and laughs at the compliment.

She is proud of her independence. “I’m more mature now. I take it serious. I do want a love life. It makes me feel lonely [not to have one]. I want a guy who will understand no sex and no kids. I need a guy to respect that and not take advantage of me—online or offline. I’ve always felt that way.”

When asked where she gets this wisdom from, she says, “Myself.”

Her mother perks up. “Maybe your family had something to do with the way you turned out?”

“No. I don’t think so.”

The laughter and banter continue. Alexa says she’s not as involved with the dating site as she was at first. “If I check messages, it’s only on the weekends.”

Her patience is as strong as her perseverance. As she reflects on dating and finding someone to be in her life, she recalls a movie she’d seen, The Great Gatsby, starring Leonardo DiCaprio. “Leo waited a long time for her. I just decided to wait for a time the way he’s waiting.”

When it comes to finding that special someone, Alexa makes it clear that she's no different than anyone else.