Through the White House Door

Today I found out that Micah was invited to take part in the ADA Celebration on the White House Lawn later this month. I couldn't help but marvel at the incredible journey he has taken our family on. As I head into my first year of teaching in the fall, he continues to remind me of the power of making sure all students are given opportunities to share their dreams, build community, and strengthen their self determination skills.

Recently our family wrote a number of articles for the National Gateway to Self-Determination (http://www.ngsd.org/). You can read them here on pages 20-25 : http://ngsd.org/sites/default/files/research_to_practice_sd_-_issue_6.pdf

My Brother’s Journey: A Sibling’s Perspective About College and What Comes Next 

I love telling people that my parents, who reside in Michigan, live at least a day’s car ride away from me (in Boston, MA) and my brother (in Syracuse, NY). This is a BIG deal. My brother and I visit each other in our different east-coast states without our parents. This is a BIG deal. My parents talk to my brother and me, at most, a few times a week. This is a BIG deal. Never could I have imagined that this would have happened. Instead, sometimes, having a brother with an intellectual disability, I grew up wondering things like: Who are Micah’s real friends? Will he ever live on his own? How will he live a dignified life when most of society doesn’t value him (and his label)?

In many ways, Micah had a picture perfect inclusive K-12 education experience (this doesn’t mean it was easy to create or actually perfect in execution) – he had a circle of friends, he ran on the Cross Country team, he was elected to homecoming court, he played on the local soccer team, he won the social studies department award. Inclusion has always been a foundational belief and practice in our family. It was an essential part of Micah’s education experience and unlike some special education students, his inclusive journey continues well beyond grade school.

However, it wasn’t until he and I both went to college that something finally clicked for me as his sister. Inclusion became real and practical. Up until this point, inclusion made me feel good. In grade school, I felt safe knowing that Micah had things to do on the weekends, like his peers. It felt good knowing that Micah’s peers cared about him. In the back of my mind, I had always wondered if people really wanted to be his friend (or did it just make them feel good)?

As we moved into college, inclusion felt more complex. I saw Micah being valued and I actually saw others grow in genuine ways as a result of having a relationship with him. I began to see people develop relationships with Micah because they saw the worth in who he was—not just because being his friend made them feel good. I saw Micah make decisions about who he wanted to be friends with. Suddenly everyone didn’t have to be his friend; he and they could choose to become friends.

I saw Micah grow academically from the rigor of college. There were times when we were both taking similar courses and we’d talk about what we were both learning. He didn’t “get” everything in the textbook (neither did I) – and that was okay. Not understanding everything is part of his
disability. This does not mean that we lower our expectations; it means that we don’t all have to understand everything.

College meant that Micah had to negotiate what his paid support-staff peers would do with him and unpack the tensions around “paying” a peer to support him. Inclusion in college meant that it wasn’t always easy for him; the path was not paved for him – he had agency and self-determination in creating his future. He faced institutionalized discrimination; the college would not allow him to live in the dorms. He sued, eventually won, and spent his last semester living in the dorms. Micah’s learning did not just happen in the courses he took. Like most college students, he also grew leaps and bounds
from the social interactions and genuine experiences outside the classroom. For example, as a result of his legal battle, Micah now knows lots of legal jargon. Inclusion meant he grew as a result of his (real) life experiences, not the simulated life experiences in a classroom.

Like me, Micah got to test the waters of “independence” (or at the very least, had the opportunity to see if he could make it without our parents) and develop the courage to continue to take risks. When he returned from a conference and told my parents that he wanted to move to Syracuse, this short statement seemed to reflect his entire history of being immersed in all aspects of life. As a result of his college journey, Micah had learned to create networks of support and advocate for his needs. Today, he wants to live away from our parents, create new communities, and be immersed in a community that he believes just “gets it” (disability, inclusion).  He knew (and I knew) moving to a different state in an apartment with roommates without disabilities was not going to be easy. But he had the tools to make it successful.

I was excited when Micah moved to Syracuse in January 2012, but I was also worried. And as he continues on this exciting journey there are a few things I continue to worry about. Micah has lots to share with the world and especially educators. I hope that Syracuse finds a way for him to share his stories--what he has learned, not just about inclusive education but also about disability culture and disability pride. I think what makes his story unique is that inclusive education for him has been tied to learning more about his disability and becoming part of the disability justice movement. I know he can do more than be a go-to person at Syracuse--I think he can show his PowerPoint and teach segments of disability studies and education courses. This is going to take work on so many levels so I’m excited that he’s surrounded by people who care about him and totally “get” him.

My worry is that his just being in Syracuse will be enough for Micah, that he will be so happy to be around people who respect him that he (and his community) will forget that genuine respect comes from being challenged to continue to grow. I am afraid that we will get complacent. That’s my fear, my nightmare. I hope that he is able to find ways to connect, grow, and learn from the Syracuse community. That he is able to develop, to be challenged on his PowerPoint and speaking skills. That he is able to learn more about social justice issues. That he is surrounded by people who challenge him--who tell him when he’s talked too much about himself and when he hasn’t asked enough questions about others--when his ego is gotten a bit too big (I say this with the most love in my heart). I hope
people can continue to be real with him.

While supportive, nurturing communities that help people grow as people and as professionals is something many hope for, it is particularly important for people with disabilities. I think because the struggle to create inclusive communities is challenging, it is easier to be satisfied when we think we’ve finally done it (create the community); in reality, though, creating inclusive spaces and communities is always ongoing. Efforts to include Micah didn’t stop once he was attending the neighborhood school, they didn’t stop once he was playing on the local soccer team, and they didn’t stop after he moved in the dorms at college. Micah continues to find more ways to make the world more inclusive for people with disabilities. It is process that forces him, our family, and our communities to grow and constantly strive to do better.

We’re still figuring out this new chapter in his inclusive journey through life. I can tell Micah that it’s not always perfect, that he shouldn’t get complacent when it feels safe, and that he should continue to dream. And that he’s got a community around him to help make the unimaginable imaginable and tangible for him.