Observations From Below: Variation of a Full Life

This was for a panel discussion I was involved in last week. Since I didnt get to deliver the whole speech (its fairly lengthy), they wanted me to put it on my blog. I hope you enjoy.

Good Evening,

My name is Bryan Dooley, and I am a member of the North Carolina Council on Developmental Disabilities, appointed by Governor Pat McCrory. I am also a board member of Disability Rights North Carolina, a board member for the Center for Independent Living (CIL) in my area called The Adaptables, a founding member of the NC Empowerment Network, and a member of the Post-Secondary Education Alliance which meets here at the Carolina Institute on Development Disabilities. I want to thank McCafferty for convening this event. I look forward sharing my ideas on this panel.

The Title of this discussion is Variation of a Full Life so I thought I would talk about how my life is different yet still a full and productive life. One of the obvious differences is that I do not have a traditional 9-to-5 job right now. Instead, I started writing a blog for the Huffington Post called Observations from Below. I also have a website with the same title. The Huffington Post offers me exposure, and it is cool to say I write for the Huffington Post because it is widely known national publication. Unfortunately, they do not pay every blogger, so I need other sources of income.

I work as an independent contractor for a local lawyer and friend of mine named Bailey Liipfert. He was starting a new law practice, and he brought me in to help provide social media and blog content for his business. This corresponds with Special Needs Trust, Elder Law, and other fields of his practice. I help him in his practice to stay connected to the disability community. While I am forever grateful for the job, it is small and does not pay the rent. On the other hand, Liipfert has given me the freedom to sit on all these boards to advocate for expansive impact on the Tar Heel state.

My family structure is a little bit non-traditional also. I am an only child. My single mother raised me with the help of my grandparents and several aunts. I have a large village. I have many cousins who are much more like siblings. I am closest to my cousin Jay and his wife and kids, one who calls me Automan. Also, my cousin Cara who is two weeks younger than me and lives near me. To illustrate our relationship, Ill tell you a very brief story. One day, because she is interested in Marine Biology, I took Cara along with me to see Jean-Michel Cousteau. At some point during his presentation, he invited everyone to move closer. She told me not to get up. Another girl gave her such a dirty look not knowing we are related. Cara would never make fun of me in a malicious way, but her relationship with me is such that I am her equal and I tease her also.

My relationship with my direct support professional (DSP) is non-traditional also. In general, I have heard a lot of them do not stay around long for different but important reasons. The pay is not good and typically there are no benefits. Some DSPs work multiple jobs to make enough money to live on. My story, in contrast, has continuity. My mother chose my DSP when I first got on the NC Home and Community-Based Waiver initially called the CAP program in NC, which is now called the Innovations Waiver. For those who dont know, the Innovations Waiver is a partnership between the federal government and the state which provides services in the community for people at risk for institutionalization. The Innovations Waiver is an optional service, and the number of available Waiver slots is determined by the NC General Assembly. Roughly 12,000 people in NC have an Innovations Waiver slot to provide supports with just as many on the waiting list. We need a whole lot more Innovations Waiver slots. It can take a very long time to get a slot, for some people, up to ten years.

But now, back to what we were talking about, my good luck with DSPs has continued through college, and even through today. In college, all my DSPs had some connection with the Guilford College softball team. My first DSP was a star on the team, and she was the one who approached my next DSP about taking the job, and so on. I remain close to my DSPs even when they are not working with me. So far, Ive attended three of their weddings.

My school career has also been nontraditional. In 1992, I started at a unique school in Winston-Salem called the Childrens Center for the Physically Handicapped (now an outreach for The Centers for Exceptional Children). Let me make clear that I believe in integration as much as possible. But I did benefit from the Childrens Center because it let me grow up with my peers who had disabilities and some other students who did not. I still keep in touch with some of my friends from way back in pre-school. Weve all graduated college, and many of us are doing great things in our chosen fields, although with varying financial success. I was told by one of my former teachers that because of the evolution of many protections and changes in thinking over the years, I would not have been in that school to begin with. From my perspective, that would have been a terrible thing. I would not have had the strong relationships with people with disabilities like me. I found many of the same group in Bolton Elementary school and took classes with some friends all the way through fifth grade. Overall, my experience at Bolton was productive with teachers. I did have one bad experience with my first-grade teacher. She was on the edge of retirement, so she did not have the patience to deal with a student with disabilities. This teacher asked my support staff if she could handle teaching me, which was not her job.

Like many children, middle school changed my life. At Meadowlark Middle School, I shared a room with another person who had a more severe disability than I did. I am still angry with myself for the way I treated him. I made fun of him originally, and I still think about the reasons why. For one thing, he had a purple wheelchair, which at the time, I thought was sissy. The other reason was that he was one of the few people I was physically bigger than. One day, John gave me a dirty look because although he was nonverbal, he overheard and understood what I was saying That is when the Catholic guilt kicked in. So that day, I turned over a new leaf, and became a friend and advocate for him. We shared an occupational therapist, so I talked to her about his situation, and started looking out for him. I know thats not supposed to happen, but thats what happened. I had two other experiences in this school I should talk about. One was another bad teacher. This time, she refused to teach me because I had CP, and she had a previous student with CP who was a problem child. So, she assumed that all of us with CP were problems. She didnt know it, but she almost caused a march on Meadowlark. At that time, I had many friends in the school system, who were all angry with this teacher. School administrators reassigned me to a different teacher, and I did better in the new class. Meadowlark is where I met another mentor who had CP. He was in law school at the time and inspired me to focus on academics to improve my chances in life. This was a good thing and a bad thing because I developed a tendency toward perfectionism, which is not the healthiest mindset. I didnt make another B until college. Even then, it was only one B in a class I didnt need, Informal Logic. But that comes later.

By high school, I was becoming recognized for my active advocacy. I won two major awards. The first was the Yes I Can Award in Assistive Technology because I taught teachers how to use different programs. My school did a special fundraiser when I was a freshman and gave me the money to fly to Salt Lake City, Utah and collect my Award. On the day I left, all the students and staff lined the hall and clapped as I was leaving.

I also received the Matthew C. Graziadei Award for being the top advocate in the state for keeping disability issues in peoples faces through an advice column.

It was not all perfect at Reagan High School. Once again, I had one bad teacher. I was very interested in journalism. I took the introductory class and got an A. But when it was time to sign up for the actual newspaper, the teacher took me aside and told me that I could not be a staff writer. She said that because it was more than writing, such as photography, making corrections, and setting up the printer. Looking back, my family and I should have fought them on the grounds of the Americans with Disabilities Act. Instead, I wrote an article over Christmas vacation to prove the point that I could produce good work. The teacher loved the article, and my column, Observations from Below became one of the most popular parts in the newspaper. Because of my column, a lot of people started to talk to me, and I developed friendships. If I had not been stubborn, I probably would not have written my first column, and I would not be writing today.

While I am on the subject of high school, I should mention I was discouraged from taking A.P. classes, despite the fact that I only made As in high school. I graduated high school as a member of the Honor Society and went on to Guilford College. In college, I had a very supportive first-year English teacher. I happened to show her a collection of my high school writings. She encouraged me to join the newspaper. Because of the things that my high school journalism teacher said, it took me two years to build up enough confidence to join the Guilfordian. For the teachers in the room, please be careful what you tell students. It can stick with them longer than you realize, both the positive and the negative. I joined the newspaper and loved the experience.

Newspapers have different levels. There are staff writers, who are on the lowest level, and then in the case of my college paper, there are Senior writers and editors, and the Editor in Chief, who is the student in charge. Just like everyone else in the class, I began as a staff writer. I impressed my professor and editors. Soon I was appointed a Senior writer. I still think this is one of my biggest successes because the professor was not the one that chose senior writers, it was the other students.

Imagine if I had listened to that high school teacher, who I should point out, meant well. I wouldnt be writing for the Huffington Post today, and I wouldnt have had the major impact on Guilford that I was able to have through mainly the newspaper. In addition to the paper, I was in Student Government and served on many important school committees. Each of these activities took time, and I had to keep working hard, and I met my goals. I graduated with many scholarships and honors, as well as a 3.88 GPA. I would not have had any of these accomplishments without a very big village of family and friends, who continue to support me. I come from a large Irish family. I type very slowly myself. I talk, and other people write it down for me. My aunt did most of the college typing. My mom and grandparents advocated for me and provided personal care. I also had a host of other assistants.

As teachers, parents, and leaders, you should investigate dreams. Then use those dreams to create goals and strategies that focus on what the students CAN do, and not on what they CANNOT do. I am not here to bash the government or any of the programs that are meant to support people with disabilities. Vocational Rehabilitation pays for my aides and paid for most of my private education, but I encourage you to tell your students NOT to rely solely on the government. I found most of the opportunities I have had myself, through friends. That is how I found my part-time writing position as social media editor for the Liipfert Law Group. If I had waited for the government to find me a job, I would still be waiting. I have plenty of volunteer positions that look good on a resume but am still trying to find paid full-time employment.

Another important thing is to help your students create relationships in the community. Find a way to get your students involved in the community, as this will provide natural supports for them and their families. Government officials talk about people without disabilities as though they are completely independent and do not rely on anyone else for support. If you think about it, this is not true at all. We all buy goods and services that we would not be able to provide for ourselves. We all have friends, and most of us have family that provides us with support.

As I start to close, I challenge you to consider your perspectives and contemplate whether you start with having low expectations for someone with a disability or if you tend to view the person through a frame of high expectations. That said, you should not have higher expectations for people with disabilities than you have for yourselves. We are all interdependent, as it should be.

People with disabilities want to be seen as human beings with likes and dislikes, strengths and weaknesses, and most importantly, individual goals and dreams. They want to have a choice.

As I demonstrated earlier, I am involved in many of the states organizations about people with developmental disabilities. One of the issues Im most passionate about is the North Carolina Council on Developmental Disabilities. With their help and the help of the other partners in the DD network, we are forming a new statewide self-advocacy organization, called the North Carolina Empowerment Network (NCEN).

We recognize that there are a lot of good self-advocate groups. We want to be a good partner to them and help with their activities and goals. One of the partnerships Id like to see is with the North Carolina Youth Leadership program, which is a leadership development program for young people with disabilities designed to get them ready for post-secondary life, whether that be college or work.

Id like to see the graduate group of the program become involved with the NCEN. It would be good to harness that new energy, perhaps through specific involvement activities. Future generations need to be involved; their passion, uncontainable energy, harnessed ASAP. We harness their youthful energy and freshness, and partner it with experienced self-advocates like NCEN members, who develop and maintain a running agenda of engagement opportunities.

Thank you for your time. Im happy to answer any questions you all have, and I thank my colleagues on this panel for their time as well.